A battle lost with cancer, the story of my late wife from 2010

These words, like my images, are copyright protected, do not download, copy, print or publish. This was first published on PBASE during the years of 2009 - 2010! I removed it from there for personal reasons but it was quite inspirational to many people over the years and as that site now pretty much none fuctional I thought I'd republish it here. Warning this is a VERY VERY long read and those who read it said it took a weekend. I'll publish part 2 in a week or so.... They are my own personal observations of what is happening to my wife, Susan Hobbs, and her battle with cancer and my personal thoughts and observations about it, her and those who are treating her. I will take this opportunity to remind those reading this of the dangers posed by the palm oil trade. I won’t bore you with the details, just put palm oil into Google. Bottom line is it is destroying our rainforests and the animals that live in it, esp the orangutans that Sue so adores. Palm oil may not be shown as palm oil on food products, it may only show as vegetable oil or fat, in that case we have to call the company and ask, if it does, we personally try to avoid it. I want to add a link to my mother’s book about her rescue cats http://www.amazon.co.uk/Cats-Tails-Amazonia-Sylvia-Hobbs/dp/072233933X/ref=sr_1_1?ie=UTF8&s=books&qid=1253214196&sr=8-1 Those of you who have been following this sorry tale will notice that I have sorted it out. Those new, good luck reading this lot, but seriously thanks for taking the time, my idea of sharing this is to help others who may be in a similar position. Feel free to leave a comment or send me an email. Please put a private comment to tell me you have emailed me as I don’t use this email often, thanks. My beautiful wife recently (Feb 2009) lost a whole leg, hip disarticulation, to a sarcoma. For those who have lost the cancer fight, we think of you. I first felt a small lump on Sue’s leg late September 2006. Three weeks later it was diagnosed by our GP as a haematoma, ultra sound scan followed late November 2006. Diagnosis was confirmed as haematoma. Around Christmas 2006 Sue started to get other symptoms, she was starting to feel queasy and sick. We went to hospital four weeks later, he referred us to an oncologist at a different hospital. The first of the MRI and CT scans were performed early Feb 2007. We were told it was a high grade soft tissue sarcoma. Treatment didn’t start until early March with chemotherapy. Sue had four courses of chemotherapy treatment, not the planned six. As the lump was so large it was decided to stop the chemotherapy and operate to remove the lump mid June 2007. When the lump was removed it weighed 4.2kg or 10lbs. No more chemotherapy was forthcoming. We had an appointment with the consultant surgeon and I remember him saying something against radiotherapy. The radiotherapist made it quite clear that radiotherapy was a valuable option, we now question why it was an option rather than you need this. Sue signed the consent form there and then. Something was ringing bells in my head about what the consultant had said in a recent previous meeting regarding radiotherapy. I sent a letter expressing our concern and we were given an appointment to meet him, put simply he did not recommend radiotherapy, I seem to remember him saying if it was his leg, thanks but no thanks. It didn’t occur to us to ask why or what would be the consequences of the cancers return. We were under the impression that if the cancer returned it could not be retreated by radiotherapy a second time, so we presumed we had that treatment up our sleeve, should it return. We asked him to contact the radiotherapist to say that with his recommendation we were not going to proceed with the radiotherapy. All the scans were clear in the following year and a quarter. All appeared normal until early autumn 2008. Then something started happening with Sue’s left inner upper thigh, starting mid September 2008. Of course trust me to feel and find something in there. But of course it took the experts months to prove me right. We had regularly walked at least a couple of miles around our local park with the dogs for over a year daily and had walked up to 6 miles around Cheddar on up to half a dozen times in the few months preceding one Dartmoor walk in September 2008. We used to regularly walk, in the days before the cancer, Dartmoor and Cheddar with our dogs, anything from 10 to 20 miles in a day. Sue described it as a knotted muscle and said it does not appear to feel like the lump that was removed. She has always thought it is a muscle as it feels muscular in discomfort. Sue was limping on it. When we were walking the dogs for a short walk during the week, the leg seemed to improve – ie walking becomes easier. Sue says it is occasionally uncomfortable awkward painful to sit or put weight on at the moment. It is painful to lift the leg. The symptoms have manifested a lot quicker than the lump. She was still taking Ibuprofen. Sue still wondered if there was an infection in leg. She says something isn’t right in there. Later she felt it was more than just a pulled muscle. To my touch it did not appear to feel like the lump that was removed. It changes depending on position of leg. One minute hard the other softer. The skin over it is still pliable, and not stretched. However did that open the possibility that another form of cancer has crept in or that we are missing something regarding the original cancer returning. At one point I said to her I don’t like the feel of that, that didn’t cheer her up, I can tell you. We had a phone call from consultants secretary to see us on 25th November 2008. I sent a letter following this meeting with consultant to my GP expressing our shock, as consultant had walked in, said we were worrying about nothing, said he would arrange an MRI scan and walked out, we were left in the consulting room, Sue with her trousers around her ankles. An MRI scan was taken about a week later and we had a phone call from Dr to say that they had found a build up of fluid and that it would be drained by ultra sound shortly thereafter. This liquid turned out to be blood, it was tested and proved free of any cancer cells. We were told that it may have but unlikely come from the ptfe tube that was inserted during the original operation. A major blood vessel was sacrificed with tumour. This could not be confirmed at the time or for a few weeks as when the second MRI leg scan and first CT chest scan was performed it was a week after the draining of the blood and the pocket had filled up with blood again. It was after these 2 scans mid December that another specialist spoke to Sue said that the blood was blocking any decent view and that cancer now could not be ruled out. I picked my wife up after that with the car with her in tears. This was the first mention of the possibility of the cancer returning by a doctor. Consultant surgeon performed a reconnaissance surgery on the thigh on 24th December. We were told that the tissue, samples were taken for analysis, looked healthy and that the graft was not damaged and that the collected blood, 2 litres was drained. We were again very positive, especially as Sue was home in time for the Queen’s Speech! We saw consultant very early January 2009 and he gave us the devastating news that the samples were positive for the same type of cancer and that he would recommend an amputation of the leg at the hip. We were gob smacked to say the least. He did mention an attempt at trying to save the leg with surgery and radiotherapy. But amputation was high on the list! We then had another two weeks to wait to discuss the next step properly in mid January. His team of experts, himself and the radiotherapist, highly recommended amputation of the whole leg to help save Sue’s life from any spreading of the cancer. The earliest they can do surgery was mid February 2009, another three weeks from that meeting or five weeks from when the news was first confirmed. We had a second opinion from an expert who happened to be in the hospital and he painted an even bleaker picture, but his communications were top notch, we actually learnt a lot more from him. The second opinion made it quite clear that the first lump had been so large that it would have meant the two main nerves and quite a bit of muscle mass being removed, this would have left a dead leg. They didn’t think radiotherapy would be an option on its own or pre surgery and of limited value after surgery. So it clearly should have been done in the first instance, and at this time we have no understanding of why the consultant surgeon was against it. We do feel now that we should have taken up the offered radiotherapy in the first instance of when the original tumour was removed. But we were falsely under the impression that it was wise to save it for a recurrence. Now we have to sacrifice the leg without having tried all the options that were open to us as we had put our faith and trust in the consultants recommendation in 2007. If we had known this was the outcome, losing the leg, of a tumour recurrence we would have gladly taken the original offer by the radiotherapist of radiotherapy. After all we would have had nothing to lose. We feel we were not given all the information originally. Simply put, in our opinion and with hindsight, not having radiotherapy was a mistake. One that we hold the consultant surgeon at the time accountable for. We were following his advice. The leg was removed, but the wound opened up massively and Sue had to stay in hospital for a month whilst it closed enough to allow a homecoming. I continued to dress the wound at home between mid March when Sue was home and mid June. It really took that long to fully heal over. I wanted to do the dressings myself. Mid June 2009 just before Wimbledon I saw a small rising that I was suspicious of on the hip, but as usual it took the experts a little while to figure it out, like six weeks. July 2009, over the past month a small swelling around the wound area has swollen and grown, the specialist has looked, it is liquid, as confirmed by an ultrasound scan, we hope this is not a recurrence due to the time taken to remove the leg, time will tell... I sent a letter to the consultant asking him to check this out, this is a part of it. I will tell you what I think and what gravely concerns me, considering that the leg was not removed that quickly after the discovery of the cancer within the thigh, 5 weeks from actually being told to operation, but the cancer had been there a lot longer, re all my letters at the time and that the blood that was allowed to build up was almost certainly contaminated to some degree with the cancer cells as told to us by the Oxford Consultant that Mr * referred us to for a second opinion at the hospital at the time, I feel there is a high chance that when the leg was removed some of that contaminated blood was brought up to the hip and hence the issue we currently have. I maybe wrong, and I want to be proven to be wrong, but until proven wrong, this needs a lot of investigating. I think my letter fell on deaf ears, it was never answered. The swelling has grown to be quite large, red and tender. Our GP said it was an infection, our consultant disagreed, but amazingly 2 weeks later he also thought infection. But it hadn’t changed one iota. They have drained liquid from it 3 times now, at least each draining has been less liquid each time. The first draining took 500ml, the second a week later 300ml and the last draining last week took 150ml. The ultrasound scans look better each time as well. It was MRIed the other day, we await the results of that. Today, Sat 1 Aug, Sue has a temp of 100f! Sue’s temperature was madly fluctuating over the time when the lump was growing. 5.8.09 - the cancer is back in the hip sadly. But we will fight on, we await the meetings of the experts to decide what to offer. We were told by our consultant that he didn’t think he could operate on it. I wonder if it was anything to do with the fact that he scanned it too late and let it grow too large. We were not really surprised, to be honest, we were expecting it. I think we were really cross that it took the experts so long to discover it. I was suspicious from the moment I saw the swelling in June. Sue took it better than me, at the time especially in the evening. I just broke down and cried for days on end. We went to Dartmoor on the day after, a Thursday, I think, as that was our place, Sue managed a short walk of about 100m from the car, we sat under Brat Tor and drank our sorrows with tea and rolls. I cried on and off most of the day. Sue never shed a tear. 19.8.09 - Back from consultants plastic surgeon, it was really a second opinion, and it still took this chap to tell us the extent of it, not our own consultant, they say the scan of 3 weeks ago shows that it had started to creep into the pelvis, there are so many blood vessels up there that Sue could bleed to death on the operating table if they even tried to operate, if they operated they probably wouldn’t get it all out, they would have to take muscle from other parts of the body, like ribs and back to patch it up, it would be a massive open wound and mobility would be much less due to muscle loss in those areas. We won’t know about radio and chemo until 3pm today as options to try to shrink it, but in a nutshell we are up the river and we don’t have a paddle. Bottom line we told them something was up ages ago, they simply took too long to do an MRI IMO, even that was 3 weeks ago. We are looking at palliative treatment…. I was the “stronger” one here, Sue shed her first tears. Let you know more when we hear it later… There is hope after all... and he is a surgeon in Oxford called Mr Whitwell, he recons he can get it all out, with minimal damage to the muscle on the back, the body has plenty of redundancy, apparently, so Sue should still be able to walk with crutches, he will do a hind quarter amputation, removing the tumour and the pelvic bone or something, then a bit of plastic surgery, but not too extensive, there is plenty of buttock skin that should reach some way. Getting rid of the tumour is the key. We need to get a CT scan of chest again soon, to make sure that still clear. Need that to be clear… They will then do radio or chemo after surgery. So bit better news now… I joked that we were getting the coffin nails ready, now we have a chance, what a rollercoaster. We will keep fighting! It will be done in Oxford. Op takes about 6hrs, Sue will need to stay there about 2 weeksish… Operation date 2 Sept 2009 - at bloody last!! 5.9.09 - this is extracted from a few emails to friends, so may not make total sense, but just updates my other friends out there in the world. The lump was totally removed, but consultant told me on phone, straight after op when I was in car, parked on Dartmoor, that it was larger than they anticipated, what really, no sh*t, the scan was weeks ago, so no surprise to me, so they didn’t get the clear margins they wanted, they had to cut into it to get it out. Having said that he did an amazing job, we will truly be indebted to him. They might want to transfer Sue to our local oncology soon, maybe even late next week to start chemo, and do radio as well, once wound heals, no plastic needed. I spoke to Sue in the recovery room, she sounded really pleased to have a light lump free hip. My walk on Dartmoor was eventful, I wanted to get away from it all, I lost a path and had to wonder across open moor in mist and very heavy rain, Sue would have hated it, I did get a bit disorientated, but due south got me to a fence I knew, eventually, then a tor, then on to a road, did a 2 mile road walk, save navigating in mist… must have done over 10 miles… measure it one day! I was never scared, just wanted to keep going as quickly as poss in the knee deep grass and very boggy ground until I reached a place that I knew, the end!!!! It was the rain that really spoilt it. Had no incentive to stop, even for a thought!! But did think of Sue a lot, Sue even said that she thought of us on Dartmoor just before she went out. Mr Whitwell told us Sue would have had about 2 weeks to live if he had not operated when he did. She had to have 3 units of blood Tue night and 8 units the operation day as her haemoglobin was 5, I am amazed she made it that long. It should be 12-15, it was 7 a few weeks ago, so the blood she had then was well run out. She is in very good spirits, ate all her dinner the next day, that says it all. I really get the impression that she will get radio and chemo soon. They put a sort of barrier in near bowel to protect it from radio. 10.9.09 - Another quick update, wound not closed properly, they doing a small op tomorrow, Fri. So that will delay radio a bit, they still plan to get Sue back to our local hospital sometime, poss mid next week. Once wound healed she can come home, we hope. They will do radio 1st, as an outpatient or inpatient if still in hospital, then probably chemo, now told can’t do both same time. She in better spirits today. she saw her parents for the first few days of this week. 15.9.09 am - It appears that this particular section is getting a few hits, more than my other sections at this time, so thanks to all those out there who are checking up on us. I have been visiting Sue mostly every day over the past few days. I was going to take a break today, it is a 90 minute trip to Oxford in the car, but I had a few questions that I wanted raised so I faxed them to our "new" consultant, and he arranged for a email to be sent to me to request that we meet up today on the ward. So naturally I will fly back for that. Sorry, but where has this wonderful chap been these past nearly 3 years. In the past nearly 3 years I sent probably 2 dozen faxes, with questions and concerns, and I don't think one has ever been directly answered. Anyway, Sue is doing well, she still has the catheter in situ, and one drip in the wound is still taking liquid out of the wound. So she is still bed bound due to that, but the physios have been getting her out of bed and sitting her in her wheelchair. I think they hope to take her for a short walk today and maybe do a few stairs. Not sure Sue looking forward to it, but it ought to be a walk in the park for her. She has lost a lot of conditioning, but again she should get that back sooner or later... We don't know when radio will start, that is one of the questions that I want to ask this afternoon, along with a bout a million others, inc - when is she coming home. 15.9.09 - 9pm to be exact. The new consultant, Mr Whitwell, saw us both today at 5pm on the ward. I appreciate his openness and honesty, he is polite and shakes our hands, he doesn't beat about the bush and he tells us that this cancer is a nasty bugger, my words, this is something that I have known for a bloody long time, and at last we have a specialist who is saying it and hopefully won't mess around. Maybe I am out of turn when I say this, but I do feel that if he had been in charge over 2 years ago we would not be in this position. He reiterated that he had got it out and that it had spread more than he thought, and that they want to do radio and chemo as quickly as possible. He gave us a less than 50% chance of survival but that is still a good chance, better than 1%. After all let’s face it here, cancer is either going to kill you or it won't, that is 50/50. He reiterated that the chest was clear in the last scan, a few weeks ago, and that if that changes it is curtains, so we had better make sure that doesn't change!! We really need that radio and chemo pronto. The wound is still leaking a bit, but not too badly, they hope to remove the last drip drainage bottle tomorrow. Annoyingly the actual wound itself is also showing a little discharge onto a dressing, hope that congeals and stops soon. I took my flask of tea and rolls as I always do and had my picnic with Sue when she ate. I accompanied her on a short walk, that catheter is bloody heavy, should have emptied it prior to walk around ward, not after – numbnuts. We are keeping our peckers up. Following my visit Wednesday afternoon (16th). I had an email from Oxford, their comms seen pretty good, just what we need, sorely missed over the past 2.5 years. There is / was a chance that Sue may be home for the weekend. I will try not to get too excited, been there seen it and got the t shirt. The 2 weeks are up. I find that I can cope, ha bloody ha, with Sue in hospital for 2 weeks, but once that 2 week barrier passes I get itchy feet for her to come home. I always feel I can do the job myself. I would if I could. I always remember Steve Irwin saying “you’ve had your turn, it’s mine now” when he was in the Antarctic. Thinking of you, Steve. Ironically all this kicked off a month after his death in September 2006. 17.9.09 - Spoke to Sue on phone so this is what I gather today as I had a day off today from visiting duties, that sounds so callous. Poor Sue stuck in that hospital and I was Lording it up watching England play Australia on Sky. No justice. Having said that we did have a couple of chats on phone and I missed her terribly, the rest is one thing, but it does the soul no good, nor the pangs in my chest. But I guess I did need a break. I am flying through Hong Kong – by Stephen Coonts. The wound is still leaking into the dressing, and past the dressing, the drainage bottle still in place. At this stage I seriously don’t trust that liquid. Despite being told it is normal. They arranged a specialist nurse to check today, she took a sample of it for analysis. What are they analysing, infection, I think, maybe they ought to check it for cancer as well, though I doubt that will show up. The liquid tests always show negative, even when it is positive so that means diddly squat. Do I sound annoyed, well I am, here we go again another wound that won’t close, whilst the clock is ticking, tick tock. I have a list of questions which I am about to email them… They will probably get fed up with me, but it is all I can do, so I do it. I will be better tomorrow when I see Sue, which always makes a difference. That is the only time I am happy when I am with her. 18.9.09 - I woke up at 6.30 this morning and let my dogs out for the loo, the garden seemed quiet, I HAD a big pond pump and filter box that I had recently bought. It was BIG, it took all my effort to get it insitu. I noticed a lack of a water flowing noise and went to investigate and some bugger had taken my filter box, UV light and pump from pond. They also took my 7 big koi fish. So they were organised enough to have a large vehicle and nets and presumably buckets for our fish. What really gets my goat is that they did it not far from my bedroom window. I never heard a thing, nor did our dogs! To make matters worse I saw Sue, glad to see Sue, and the wound for the first time. I was quite simply disgusted at the sight of it. To say I was shocked was an understatement – my heart and soul went out to Sue! But I am glad I have at last seen it, it is getting worse, no question it is opening up. Radio / chemo will destroy the wound area. It is quite big and deep. This is the second time her wound has opened up. I guess plastic surgery of skin from buttock or back could be done. But not sure about the hole! Or they could send Sue home and I will dress the wound and visit the hospital weekly to check on the wound. Probably not viable at this time. Shame, bummer. But that wound will take up to 2 months to heal. The wound, 1st time it opened up - that was a BIG open wound in Feb took 4 months to heal, and in that time the lump formed (as a slightly noticeable swelling) by mid June, that was after a so called all clear. This, the cancer, will grow a lot quicker, as we know it is there. We have no time to waste. This open wound is life threatening. 20.9.09 – I saw Sue yesterday afternoon, I was due to get there at 3pm, I left home at 1.30, but an accident on the A34 to Oxford delayed things by over an hour. Anyway, I got there and Sue told me that her consultant had popped in, yep on a Saturday, Sue was much happier having seen him, not with the wound, but with his attitude. He, as he always is, was polite and helpful and he apologised that the wound had opened. He will ask his plastic team to see Sue on Monday to see what can be done, hopefully just try to pull it together and put a stitch or 4 in it. I hope they can sort it out sooner. They have filled the hole with gauze to help soak up stuff, that turned Sues tummy. I hope once it is done she can come home, let the wound fully heal, and be treated with radio as an outpatient, but they have to make the decisions. Chemo would have to be inpatient. I forgot to say, the latest reason we were told the other day that the wound may have opened was due to the sticky dressings pulling it apart each time the sticky dressings were removed, leave all you medical experts out there to go figure that one. I won’t see Sue today as all this commuting and worry is killing, not the best analogy, me, when I left last night just before 8pm, Sue said I looked very tired with watery eyes. I slept like a log last night. Made up for the previous night when I didn’t sleep a wink, couldn’t stop thinking about our missing fish and pumping gear, and Sue. That really pissing me off. So London not the only place with an empty plinth… It’s just as well they left my ancient pond pump and filter box behind. That was due to be semi dismantled at the end of the month, once the new box reached its full maturity of friendly bacteria. I will watch England getting thrashed by the Ozzies today and phone Sue to tell how it is all going. Oh and ask how she is as well. 20.30 - Sue sounded upbeat on phone. Glad to be more mobile, off drainage and catheter. Walking around in ward. Looking forward to seeing the Dr tomorrow for an opinion of wound. Sue said when they put in and pull out the gauze from the wound it turns her tummy. So she will be fine watching Dawn of the Dead then. She will like the nice dog. 21.9.09, am - Sue seen Drs, they operating this afternoon sometime after 2pm. They want to close wound. They will give the wound 5 days to heal, before deciding next step... 6.10pm - I phoned the recovery room at 3.15pm I was told that Sue had just arrived in the recovery room and that she would be out of it for a few hours, to call back about 6pm to speak to her in the recovery room and I was told that it would be a waste of time me travelling to see her. I was just starting my new book, Infernal, and the phone went just before 6 it was Sue. I was amazed. I said did she ask the recovery room staff to call me and pass her the phone. No, she was in her room. Well thank you Mr Recovery Room man. I could have travelled to see my wife, but at 6pm that is not an option - 90 minutes away!! Anyway, Sue sounded fine, she is back on a drain thing, hope that won't stay too long, she had just got her independence, but no catheter. They were able to close the wound, so that was the important thing. We had a nice chat. 22.9.09-pm. I chatted again this evening for half an hour with Sue, she wasn’t too bad, but felt a bit down, being bed bound again doesn’t help. The wound has been heavily wrapped with a bandage going all around the body, presumably to try to hold the wound closed. Don’t know if or how they closed the hole, just that they closed the skin on the surface with stitches - don’t know if they used dissolvable stitches either. A drainage drip has been put back in. No real news today. I will see Sue tomorrow, so hopefully have more to report then. 23.9.09-pm. I saw Sue today, the wound is tightly wrapped so we not seen it so can’t say if stayed closed. A Dr will remove dressing on Friday to see how the wound is. No more news than that really. Sue ok in herself, totally fed up, and feels she shouldn’t be in this predicament. 29.9.09 - Sue was discharged on Friday 25th, PBase has been down, so I not been keeping up to date, also I think a couple of days of my updates were lost. Anyway, Sue doing ok, I am dressing the wound as and when it needs it. No follow up news yet - really still waiting for wound to totally heal. 2.10.09 – It’s been a few days, sorry for a lack of updates. Just being lazy and with Sue home I am more distracted now – love, you know. Anyway, we saw the radiotherapist yesterday, she will arrange a CT and MRI scan for sometime next week, we hope, that will be of the pelvis area, I will be very keen to know what it does or doesn’t see. I asked if they would do the chest, no, lets not worry about other things, lets concentrate on the active area, then low and behold, 5 minutes later, lets do a chest x-ray. Just shows you do have to question everything. They still reiterated that things are still touch and go. We are still waiting on the wound. It has closed but it is still pouring liquid out of it, I change dressings about daily at the moment. There is a small section, about 2cm by 2mm that is closed over with flesh, but I think is porous. It is such a pain. Not pain as in pain, just a pain. They said that the radio could damage the wound, make it break down, golly hope not. In herself Sue is doing really well, and getting about the house just as well as before, though I think she does find it a bit different with less bottom, extra pelvis missing. Feeling a bit down, mainly due to wound still leaking. Radiotherapy update - Radiotherapy set for Thursday 29 Oct. whether wound healed or not, well, we have no option we need radio anyway, unless they should be offering chemo, we are told radio. Wound still leaking, it is about 2-3cm long and about 1cm wide, it is not open, porous flesh, I guess. Told the wound could break down anyway… still 3 weeks away, so nearly 8 weeks after the op, yep, we a bit pissed at this delay. Anyway…. Just a quicky update. We do so feel that if the "old" consultant had acted quicker then the new consultant would have been able to have had a lesser task, a lesser task almost certainly, IMO, would have meant that the wound would have healed a lot quicker and that radiotherapy could have been started a hell of a lot sooner. For this lump to have developed as it did once was enough, but THREE times it was allowed to grow massively before anything started, that is not acceptable. IMO. Esp so big... We don't know how big this lump was in weight... Sue has radiotherapy set for 29th October to 9th December. Weekends off. I just hope they have not left it too late, in all honesty I fear what is causing that liquid. They are supposed to do an MRI sometime soon. Wonder what if anything that will show. What I can never forget is how close were must have been to beating this. When our old consultant gave us the good news that all was clear in October 2008, when in fact we were already, quite rightly questioning things, he said that we were past the danger time and that all should be ok from here on in, I even hugged him, so maybe, just maybe, the radiotherapy that we didn’t have, would have given us that little extra insurance in 2007 if we had had it – what was he thinking opening his mouth against it, and more to the point why the bloody hell did we listen. Trust and faith in him. The funniest thing happened yesterday, I was walking home with my dogs when a car pulled up beside me and said hello Tony, I didn’t recognise them at all at first, but after awhile I sort of recognised Simon from our secondary school days if it was him we went to the same junior school as well. I asked how they recognised me, the way I walk, I must have a very strange walk for someone to remember it over 20 years later. You might be wondering what connection that has with Sue… Well it has a massive connection, it puts things into perspective for me, my time at school was a total living nightmare, I dreaded EVERY single say, but those 5 years were hell on earth compared to what I am going through with Sue now. The reason is simple – LOVE of a GREAT woman. Sue asked would I ever go to a reunion, no. But in my minds eye, yes, and I would stand up at one end and say right you lot, meet the wife and her crutch. The wound stopped leaking on Saturday night, thank goodness, still got it covered for safety. Nurse saw it on Monday, she mightily please, not half as much as we were. Week commencing 26.10.09. Sue started radiotherapy this week, Monday was setting up machine and then radio, Tuesday was more setting up of machine, it took 40 minutes and then 2nd radio treatment. The radiotherapist turned up, I was not present in the room, but thankfully she delivered great news that the MRI scan was clear, though I have heard that before. Just 28 more to go. Then what. Sue says the area is warm, so we will continue to apply aqueous cream. The wound appears to be ok, but there was a little discharge, we will monitor it. We are well in ourselves, I am still royally fed up that my pond was meddled with, but I am thinking about enlarging it and putting my 2 fingers up at the crooks. But that will be a few months away, the pond, not the fingers. Week commencing 2.11.09. Radio going well, Sue fit and well in herself, we pay a little visit to Downs, walk the dogs, eat rolls and chill out for a few minutes, then to hospital. That’s the good news; the bad news is that the wound is now starting to act up. It is the same area that refused to close properly, it was ok, but the radio must be messing it about, it is bulging out and spreading up and down and to the sides, it’s about 1cm wide and 2cm long, at this time and weeping liquid. But I can only see it getting worse. It is annoying as we doing really well all things considered. We saw our new, I wont say new anymore, consultant today 4.11.09, and he is just so nice, makes me so sad that we didn’t have him from the beginning. He was very positive today, was pleased that radio going and said the wound didn’t look too bad, could lance it if needed after radio, it is sort of like a boil. He said considering the type of cancer Sue was doing really well. 12.11.09 - We were meant to see the radio expert, but he was too busy, so we saw the chemo man he took notes. Sues private area is getting painful, but that is normal – oh, thank you. We can’t help but think if they had done radio when leg was operated in that Sues area would have been less effected. In fact we are thinking back a lot recently to what was done, what wasn’t done and why it wasn’t and why it took so blooming long to get started. There is a lump of sorts on the left upper hip, it has developed rapidly over the last few days, hopefully too quickly to be nasty. They say that tissue does tighten up under the effects of radio. We see the consultant next week. Let the hassling begin again.
In ourselves we are fit and as well as can be expected, tired, and fed up. We saw consultant.  I have to admit up front that it doesn’t look quite as bad, it was stretching the skin, but that isn’t the case now, and it had grown over the weekend, no question of that, but it hasn’t grown over the last 2 days, in fact it may have lost a cm... so I guess time will tell. They seem to think that the swelling is tissue damage caused by the radio. They will complete the radiotherapy and arrange an MRI after it finished.  They seem quietly confident and said that the MRI was done right before radio and that it couldn’t possibly grow that quickly in this time... They may hold off on chemo, depending on what happens, so to have something up their sleeves, in case. We did learn one interesting thing, I asked how long our new consultant had been doing our local clinic, and it is just this year, and that our sarcoma people thing, whatever it is called, has been removed from the hands of our local experts and placed in the hands of Oxford. 26.11.09 – Our radiographers cover isn’t very good, he was supposed to cover the official doctor of radiography, as she away ill, but we haven’t seen him in the last 3 weeks, don’t even know what he looks like! Sue is doing well enough in herself, but certain areas in that area are getting ulcerated and the wound still has a large ulcer on it that leaks yellow liquid. They said it has a little infection today, so prescribed antibiotics. The other day I said to a nurse its amazing what a smell can give away, as I said it smelt a bit, she said, whilst taking a swab, you can’t tell much from a smell. The chemo Dr today said it had a bit of a smell to it. Funny old world. They are still not ruling out that the lump is good or bad, they don’t think it bad, but don’t know, they say it probably wouldn’t grow that quickly… I again asked if it was worth doing a biopsy, but they don’t want to yet, they say it won’t change the course of the treatment – radio finishes next week. I hope they MRI it soon after that, that will tell us a bit. I must admit, in the past I have thought this is the cancer back you darn idiots, cant you see it under your noses, but this time I don’t think it is, I think it is something reacting to the radio, but if we EVER saw the radiographer in charge, hehehe, then he could say whether it is normal for tissue to swell. There is the hip bone just above the swelling, within a centimetre or 2, I have and can feel it, no change there. I would have thought if it was the tumour it would have covered that by now. When asked what would happen if it returns, they say palliative treatment, they don’t seem keen to do any more surgery, they might do chemo, but there seems little commitment there. Sorry, but the attitude sucks a bit, it always has. If they said it is not the tumour, fair enough, but when they say, can’t rule it out, surely they would want to find out. Sue feeling tired and lethargic, but that normal for treatment, appetite pretty good, so that VERY positive. 27.11.09 - I saw Sue after her appointment today and she said that she saw the radiographer at last.  He looked at lump and thought it was ok, but he still arranged an ultrasound scan there and then.  There is liquid in there, not a lot, not enough to aspirate.  The lump is liquid and granulated tissue; they can't see tumour, but still not ruling it out.  No one mentioned biopsy. They did a blood test. They don't know if infection is to do with swelling, but they say there could be an association between infection and swelling. Sue was put on Flucloxacillin 500mg for 10 days.  They will see what happens after that... The leaking ulcer is just below the lump. He wasnt up on who we had seen, but Sue said he was very nice, polite and helpful.  Very chatty!  I think Sue in better spirits now. I have been in touch with a great lady in USA, on the Repairman Jack forum, she is an oncologist nurse and has been VERY helpful via private message and email and a lot of her messages I have passed on via email to our team and I feel that that, in this case, helped get things going today. Thank you. From Lee in USA – “At least an ultrasound was done...and a blood test....and they put her on an antibiotic! Finally..they are doing the right things.” 1.12.09 – Christmas here we come. Only 3 days of radio left. 4.12.05 – Ting. Radiotherapy Done. 17.12.09 – We saw the consultant yesterday, he was very pleased. The chest x-ray was clear. He had a good old poke around the radioed area, inc the swollen area on hip and said we should be very encouraged as things appear to be looking on the up, so we will have a Good Christmas this year. We see him again next year in Jan. 30.12.09 – Happy New Year - everyone. I am very excited at the moment as I have pre-ordered the first of my pond replacement gear ready for a re-build in the spring, save me a few quid on the VAT rise. I can’t wait for that to be started, as it will be so therapeutic for Sue to hand feed the koi, well, that’s my excuse! 8.1.10 – A small ulcer has developed near the ulcerated wound. The ulcerated wound, the one that didn’t heal properly before the radio, which was then exacerbated by the radio, is slowly drying up and healing. It was beginning to smell the other day, sorry for the details, we saw the nurse practitioner, she swabbed it, and we found out it had an infection in it. I dressed it with a few silver dressings and Sue was put on anti-biotics and the smell has gone and that ulcer is looking better. Annoyingly, another ulcer has popped up next to it, not open, but a soft blue white centre with a red ring. We hope nothing more than the infection. We will see the nurse practitioner or a doctor early next week. I have sent emails to the specialists requesting MRI and or CT scans, lets see what reply we get. We are due to see the consultant on 20th Jan. But will this keep? We don’t know. 9.1.10 - The anti-biotics have kicked in, the pain has subsided.  So we are positive on that front.  The ulcer has burst, maybe that why pain has gone, but hope more due to the anti-biotics. 15.1.09 – New antibiotics for new ulcer, the specimen grew new bugs. Medical Records. A lot of what follows will follow what’s above, but this is from the medical records following a request for the notes of Sue’s treatment. We feel even more now that we were let down badly by the NHS. We will need to consider our position. We are quoted as saying that we had said that in the initial consultation with the GP that Sue had pulled a muscle and that it was painful. That is untrue. Sue had not pulled a muscle. Certainly not within 6 months. What she took to the doctors was not painful. Pain only started in December 2006. We, it was in fact me, are also quoted at this stage as being concerned that this may be a tumour, too bloody right. We were told that following the initial November 2006 ultrasound scan another would follow 6 weeks later, it never happened. The radiologist who wrote to the GP re the USS, ultra sound scan, said “The region is most likely…haematoma…” Most likely. When we saw a doctor, they said “US Scan confirmed diagnosis…not decreasing….increasing.” Confirmed. Most likely and confirmed are different in my dictionary. An interim Surgeon in February 2007 said that no trauma was present. Exactly. The records show he suspected sarcoma. Apart from me asking him when Sue had left the room, could it be cancer, he said yes, I then asked if the leg was in danger, the look said it all, nothing else was said to me. So it took from October to February for someone to suspect cancer, despite a massive lump on the leg. The MRI report said “…large 20cm by 12cm oval shaped mass lying medial to the left shaft of femur and occupying virtually the whole of the medial compartment of the left thigh…” They claim that the “full course” of 4 chemo’s were given. The plan was 6. They say that Sue was walking better, if that was the case, they could well have finished the course… They were planning radiotherapy after surgery at this time…. “The feeling was that if she goes on to have radiotherapy there is little further to add to treatment if we are unable to achieve local control from surgery alone. However if we performed surgery prior to the radiotherapy then any residual cells can be killed”. In another letter, someone says “…has had some chemo…” some is not all, in my dictionary. They also said that “you, referring to the radiotherapist, would rather have this excised prior to any radiotherapy”. So at this point in the records it appears VERY clear that they are planning to do radio. Then there is a letter to our GP where the consultant says “she will be discussed at our meeting for a decision about post op radio / chemo.” Where did “decision” suddenly come from? We now have the massive debacle of the “should we” have had radiotherapy in 2007. Well, of course we should have. Why didn’t we? Simples. Our consultant surgeon opened his mouth in our presence and wrote “ ..I have confirmed to her that it is not at all an easy decision as to whether or not radiotherapy would be of overall benefit…I would also think that it best to take the radiotherapist’s advice but I had to admit to a sneaking feeling that in her shoes I would probably not have radiotherapy at this stage.” So where does that leave the patient. We put our total faith and trust in him and that he had done a good job on the operating table. But had he done a good job, that was the question. Now admittedly we sent letters that said we had decided against radio, following what the consultant said/wrote. We wrote “Sue did sign the consent form, but we presume it can be cancelled, if necessary?” that was AFTER he spoke to us about him not wanting it in our shoes. If he had kept quiet, it would have happened, of that I have no doubt. Also he made no attempt to correct our “cancelled, if necessary?” Of course it was necessary. The radiotherapist sent a letter to our GP in mid August 2007 “I understand that there may have been in the meantime a further consultation with the consultant and an agreement was not to have radio….” She goes on to say that we ought to have it. The consultant then sent another letter in late, that’s right, more than a month after the radiotherapist’s letter September 2007 to our GP expressing his feelings that we ought to meet the radiotherapist. But none of my letters were answered; we were not told specifically the devastating consequences of saying no. Once again we stuck to our guns, wrongly, because we believed in what he told us initially, we saw no reason to change our minds and it seemed they were trying to cover their arses with these letters….. That was what we thought. The whole thing was very badly handled, and I hope they have learnt from this. At the very least, I hope that those who read this learn from this cock up, of whosever doing it was… We made the decision with no knowledge of what we were doing. It was only in February 2009 when we spoke to the new consultant that we had so much info. I am 100% sure he would never have vetoed any radiotherapy. Sue wrote “ Such an option should not have been placed in my hands if the resultant decision was being questioned. Either I needed it or I didn’t… it is an unjust decision that any patient should have to consider. I had heard from several sources that should it return it would be easier to treat second time around had I not had radio previously.” We were clearly mistaken, but we were never corrected. We also wrote “we will follow your advice, but would like to know why you changed your mind”. Again we never had an answer to the question. When the tumour returned to the leg in October 2008 the consultant wrote “ she has been walking long distances in Scotland, but this has produced some aching and the feeling of a lump”, the lump was there a month earlier when we went to see the GP about it, the consultant said in another letter a month and half after that “(She) came back to the clinic today convinced….Clinical situation has obviously not changed…” then another month passed, December now “there is no evidence of false aneurysm”. I guess he means that there was no evidence of bleeding upon reviewing the USS. A week later, whilst the leg is slowly filling up with liquid and of course tumour, they write “I suspect it is likely the likeliest to be a vascular leak in view of the speed of the blood reforming”. This is also the time when my dozen letters peaked. Of course, they eventually, eventually being the operative word, pardon the pun, find out it is the sarcoma back. The Vascular surgeon, who would have reviewed the same US Scans and MRI, wrote “…this looks much more like a tumour than haematoma.” Why was that not picked up by the radiologist or consultant surgeon. We are then faced with the decision as to whether to lose the leg. I will never forget what Sue said when she was told that she would have to lose the leg, she would prefer to spend the rest of her life with one leg with me, than die early from the cancer. She sacrificed her leg for me and our future together. We now have a letter from our consultant, the old one still, to our GP, “Pre-op radiotherapy refused”. It was not offered as such, and if it was it was explained in no uncertain terms that it would have little to no effect against such aggressive cells and such a large tumour. “… explained the options here and all said quite firmly a disarticulation at the hip is the most sensible option with a good chance of a cure…” So why are we being accused of refusing something, then in the same letter he explained that removal of the leg was firmly explained… and virtually the only option. Then there is the bit that I just LOVE. In the same letter “It seems as though she and her husband, who tends to dominate the conversation”, I kid you not, it says that, “have been convinced that amputation is the most advisable treatment here…” There was then a letter from the radiotherapist to our GP. It states that I was keen to try to save the leg, agreed, but when it was explained to us that saving the leg was not really an option, that the original lump had gone so close to the nerves and this would have resulted in the nerves being removed to get the margins required, it clearly was not an option, and radiotherapy was still not considered a viable here. This clearly indicates that we should have had it a year previously and that the consultant had no reason to be against it. That was my point earlier; at this meeting we had the “new” consultant present and the radiotherapist for a JOINT chat. That didn’t happen in 2007. The radiotherapist also wrote, to back up what I said earlier “radiotherapy works best certainly when there is only microscopic disease left behind…”. Then we have one of the TWO explosive items. First we learn that “During the amputation the wall of the cyst did burst and the wound was contaminated with cyst fluid, this was thoroughly washed away…” the wall was free of cancer when it was sent for testing, but in my opinion the liquid contained cells. It is my opinion that he spread it…. I can quote the histology report “…wall of cyst…sarcoma…”. Then this, the second explosion, is a letter from the radiotherapist to our consultant. “…there was some concern at the time of surgery of the possibility of tumour spill,… this leaves us with the difficult decision whether to offer post op radio… to try to reduce her risk of local recurrence…” There was no apparent reply to that letter. This is the first we ever heard of this spillage. I won’t go on, it would come back, a few months later. But does this “prove” that the “old” consultant was anti-radiotherapy? Of course when it came back, we were once again fobbed off. When we went to see the consultant early July 2009 he wrote “…may well represent a small fluid collection.” Mid July 2009 “the swelling has got a lot bigger since a fortnight ago. USS examination…no obvious local…mass…fluid sent to cytology.” Letter from our consultant to GP, early August “Sorry to find that the MRI scan does seem to suggest…extensive recurrent tumour…even though we had not been able to find malignant cells in the aspirate (liquid).” They have NEVER found cells in the liquid, EVER! How can someone use “seem to suggest” and “extensive” in the same sentence. The consultant did write of the tumour “…this is not going to be possible to re-set it”, meaning he left us for dead?…”but would think probably radiotherapy will be the only available option”. This confirms to me, if nothing else does, that he knew nothing about radio and should not have opened his mouth against it in the first place in 2007, as if he did know anything he would know that radio is not effective against large active cells, as per us being told by the radiotherapist earlier. A second opinion wrote “…this tumour is irresectible”. Of course we met our new consultant for a third opinion, we can only wonder what the outcome may have been if we had been sent to him first and I mean first, back in 2007. You can all guess my thoughts on that. What if we had never met him? End of hospital notes, for now… Let me tell you a story about my pond. This will go someway to explaining my personal thoughts. When my koi fish died last spring I was so disgusted with myself as the parameters were out, the ammonia and nitrites were too high, and there was a lack of oxygen in the pond. I went out and ordered an aerator and new filter box. Sadly they arrived too late to save my koi. 6 Died in total. I was happy with the new filtration and aerator and planned to expand the pond this year at any rate, and what I had would have easily coped. Sue had to go to Oxford in October for her op and some miserable SOB walked into our garden and walked off with our remaining koi and new filtration equipment. I then joined a koi forum to simply let people know that it had happened in the hope of preventing it happening to others. I then “met” a few great people on the forum and I said that I planned to expand my pond next, now this, year. All I was going to do was replace filters like for like and dig pond out by hand. It was what I was happy with. Then there was a chap called Peter who, I will be honest, at the time was a right pain in the bottom. He kept banging on about a bottom drain. You must, no serious koi pond would be without etc etc. But because I had my plan in my mind I thought I will stick with what I wanted. But that didn’t stop Peter going on. A few other people said that lots of people have ponds without bottom drains and koi in them. So I was on the fence. Then someone said why not get a digger and dig the pond out with that. I would have been able to fit one in the garden, I checked. That then gave me the idea to dig deeper and bigger. That then meant that the filter I was going to get wasn’t big enough. So I looked into others and took advice. The filter I wanted would not fit through my gates. So I asked a neighbour, he said when it is due to be delivered let him know and we can get it through a fence panel, mind you I wish I hadn’t asked him as the end result there was him going off in a mood, shame. I was still adamant that a bottom drain was not for me and I was going to go pump fed, which is what I have always done. I really was dead against a bottom drain. I stood more chance of climbing Everest than buckling and getting a BD. I even said that, I hope that they have forgotten my words. Then I did more research and saw that you could get a block built pond. It was then, when people on another forum started to say bottom drain and I read a couple of koi books that the reality started to sink in. It only took about two months for that to happen. I hope to have pond built in the spring to my exact specifications and from loads of research and info from other people, many of them experts or with a lot of proper koi experience. So what has that to do with this diary… When we were told by the consultant that he would not have radiotherapy in our shoes, I saw an end to 9 months of hell and had no reason to advice Sue otherwise. We are not medically trained, we knew nothing about it. The radiotherapist was like Peter, she kept banging on about needing it. But I would not listen. The consultant had said that he would not have it, and that was all I had to go on… As we never heard from him to the contrary, I had no reason to change my mind, advise Sue or look ahead. The poor girl was “on her own”. I had done no research, and what little advice I had was not helpful. I put my thoughts into letters about being able to do the radio another time… blah blah blah. That radiotherapy issue is like my pond, the job needed doing properly once at the beginning. I listened to Peter, re my pond. But didn’t listen to the radiotherapist, because my mind was made up from the words of the consultant, and no one, except the radiotherapist, made any attempt to change my mind. I needed the top man to explain that it needed to be done. Needed him to admit a mistake and strongly suggest that actually you would benefit from it. But of course the whole thing was messed up due to the tumour getting so big in the first place. I guess we should be concentrating our minds on that. I even remember what that radiologist said when I asked could it be a tumour in 2007. He was adamant it was a haematoma. When Sue was first told about having to lose the leg, I was absolutely adamant that no way was that leg going, and it wasn’t even my leg. But with lots of chats, there obviously was no option. There should have been no option with the radiotherapy, and lots of proper GROUP chats. Since those heady days, we know a lot more now, we have communicated with a wonderful oncologist nurse in the USA who has given advice and I do wish I had known her in 2007, as I am sure she would have told us what for, and we could have asked more questions. We were in the dark, two lost sailors in the pacific. I sent the original of the above hospital notes to the oncologist nurse in the USA and this was her reply… “After reading through the material that you have sent, … Time after time, Sue's symptoms were ignored, treatment delayed and things mismanaged…. the standards of care were skirted, ignored or just plain denied. Good luck Tony.
My best to the both of you!” I then asked Lee in another private message, “Do you think we may have shot ourselves in the foot re saying “no” to radio?” Lee replied, “Tony,
From everything I saw at the beginning of this...the delays and taking forever to diagnose coupled with how these docs aren't aggressive enough. I would be hopping friggin mad...she lost her leg!!!! To them taking their time and mis-management.
Lee” Cheers Lee, you summed our thoughts up perfectly. 20.1.10 – We saw the consultant today; he was very pleased with Sue’s progress. The ulcers appear better, still leaking, but not terribly. We will see him again in two months time. 27.1.10 – I have been able to look at the scans of 2006. The original diagnosis scan does not look like a haematoma to me. It looks like the moon. I know for a fact that blood would show up as black nothing, this is far from nothing. I then saw the MRI image of the leg from February 2007, the tumour was pressed right against the bone, well, darn close anyway. No wonder there was little to no chance of saving that leg second time around. It makes me so cross that our old consultant said anything against radiotherapy, and how the initial scan was so badly “read”. Those three months from December 2006 to February 2007 cost us dearly due to a man not following up a scan or miss-interpreting a scan. Well, it cost Sue her leg. 18.2.10 – Been awhile, but not a lot to report. Wound still leaking, we hear it maybe a sinus. What a funny thing to have in a wound. It may clear up on its own, or Sue may need a small op to sort it out, but not for ages yet… Sue doing well, working now, back to annoying, I mean helping dad. Poor Yoda got the sack, that won’t mean anything to about 99 percent of the readers here. But I had a great laugh with good friend called Eric on the Koi Mag Forum. 23.3.10 – Crikey it has been awhile. We saw our consultant, he was happy with the hip, it has stopped leaking, but he was a bit suspicious of the chest x ray so he was getting someone to check it, Sue needs to have a chest CT scan to check it out – so fingers crossed. Not sure when the scan will be, pronto I hope. This was the start to another long wait, read on, as this x ray did show metastatic disease on the lung. 26.3.10 – That good friend Eric on the Koi Mag Forum was Peter Waddington, a true legend in the world of Koi, and I was very privileged to share a send off with Peter by one of the moderators, he basically told us to piss off on one of my threads, for all to read. I won’t be talked to like that. The editor told us that our messages would be vetted before they could be posted, like we are animals or something. All we did was have fun and make a few smile, sadly the majority didn’t appear to enjoy our fun. Peter also gave a lot of useful information. Their loss. I made a new friend on there called Suzy, she was also barred for having a laugh with us. Suzy keeps in touch with both Sue any myself. More importantly, Sue had the appointment for the CT chest scan, 8th April, so the buggers at the hospital still are in no rush, they don’t learn. Sodding humanity. Please feel free to check out my pond build here http://www.pbase.com/flying_fox_tony/my_pond_build 2.4.10 – Happy Easter. There is another small blood blister appearing where one had dried up ages ago. So I guess there must still be a sinus at work in there. Other than this annoyance, Sue is doing really well. Less than a week to the CT scan, wonder who we will see for the results, as long as they good results and it’s not our old consultant, that will be fine. 6.4.10 – We see the consultant in Oxford on Monday – just the day that my pond is due to start its professional build. Oh well, I guess that Sue does just slightly come first. I will now take my tongue out of my cheek. The boil is quite large, about 1.75cm wide 2.75cm long 1cm high – horrid thing, there is some bloody discharge and I am changing the dressings daily. Sue is ok in herself, but mightily piddled off! 7.4.10 – The blood boil is increasing in size slightly. The general area is also slightly swollen, by the fluid under the boil. Roll on Monday. We can take the CT scan as a CD for them to review in Oxford. So at least we will get results as well. 13.4.10 – Well, where to start, yesterday was not a good day on two counts, Sue one, come to that in a jiffy and me. I woke up with a dickey tummy and was on the loo and over the sink at 3am. It hit me for six. For me the rest of the day was a nightmare, but that was nothing compared to what was to hit Sue. We were up at about 7, and out the door by 8, Sue drove as I simply was not up to the task, I just had to drag my carcass out the door and plonk it in the passenger’s seat of the car. We went to Oxford via my mums to drop Bess, our dog off. We made good time to Oxford, getting there by 10am. The appointment with the consultant was for 10.50. He was half an hour behind, but as always, initially, it was a pleasure to see him. He examined the blood boil cum abscess and initially didn’t seem overly concerned, he felt around the area, and he, like me could feel nothing untoward under the skin. The abscess was on the surface. It measures about 3cm by 2cm and about 1cm high, probably more by now. Probably a lot more, that measurement was a few days ago. It smells, so I suspect an infection, though neither swab, nor biopsy was performed. I think he wanted to get it ultra sound scanned, and if that showed nothing untoward under the skin, I think he would have contemplated removing it this Wednesday, or next Wednesday. The plastic surgeon lady walked in to check, I would say she was more suspicious of it. She wanted it MRIed, and if that proved clear then she would concur. So I think they met in the middle, and as an MRI, apparently takes longer to organise, they arranged an ultrasound scan there and then. Annoyingly the radiographer felt there was a very high chance of recurrence. They arranged an MRI for today which Sue attended alone today at 10am, which meant leaving at 7.30am, to be safe, I was still well and truly under the weather, but a good night sleep and a small lie in did help somewhat, but what of my troubles, they a pittance! I have been in touch with Lee via email, the oncologist nurse in the USA and she has given plenty of hope. I took some photo’s of the abscess and sent it to her, she said it looks like a “sterile abscess, as it looks like it is only on the surface”. From feeling the area, I have to agree… she continued, “From all the surg. and wounds in that area that caused scar formation...I would expect some lymphatic drainage issues...this just could be one”. Of the image I took today she wrote “The new picture gives me a better perspective...if it were me...I would want that thing removed.” “It looks fluid filled...like a balloon. It could still be an abscess. There could be no room for it to collect deeper...because of scar tissue from prev surg.” I then said I hope she is right, she replied “Hope is a wonderful thing. Keep it till someone tells you different. Anything is possible…. Keep doing what you're doing, keep after them, keep taking excellent care of your wife....most of all keep your hope....good things happen sometimes.” Lee doesn’t mind me quoting, her words are so encouraging, they certainly help us, and I hope they may help others. So fingers crossed the ultra sound scan is wrong, they have never done us any favours, let’s hope that philosophy works in reverse this time. We see the consultant next Monday for the MRI results of today, and of the CT scan results of last week. We will then proceed as per their instructions depending on the outcome. They didn’t give us the results when we took the CD along. They did once before, but not this time, wonder why. We left the hospital at about 12.45 yesterday, and my Tom Tom told us that we would arrive back by about 14.15. Annoyingly, to cape off yesterday the M4 was gridlocked, and whilst the Tom Tom did with a bit of input from me get us around it we didn’t get home until 15.15, by which time my lower back and bottom was totally done in, and getting out of the car was a dizzy affair, my back wanting to go one way and my spinning head the other. We at least had the pleasure to meet Lee my pond builder, so at least the day ended on a happier note. I went to bed at 8pm, and slept like a log, leaving poor Sue to travel back to Oxford alone with a Tom Tom that she would not be able to mess around with in the event of issues like traffic. The newer more modern sat navs have up to date traffic reports every 3 minutes, that may have saved us a bit of time and stress, hint hint, dad! 14.4.10 - Another good thought is this, and it stems from the initial mistake delay in 2006... we know for a fact that sarcoma looks like a resolving haematoma under ultrasound, as I understand it, and that an MRI is needed to confirm this...  Whilst this is not specifically a haematoma, it could be a collection of blood like a haematoma trying to heal, maybe the radiographer was being overly cautious this time, rather than "oh well, let's not worry about it" like back in 2006... Also when Sue had the MRI yesterday, she said they did one 5 minute pass, then another 6 minute pass, then they decided they needed to put dye in the arm, which presumably goes through the blood vessels around the body, to see better what is going on due to all the scar tissue in there, they said they couldn't see much past the scar tissue, it was hindering the imaging...  so that may be positive...   15.4.10 - It is growing above the surface, now 4cm by 3cm by 2cm high, but still I can feel nothing untoward under the surface - worse case scenario is scar tissue or something not noticeably changing under the surface. That has to be positive… Sue feels reasonably fit and well, fed up and at a low ebb from it, but eating and sleeping fine, sleep, that never an issue. 19.4.10 – I hope we are not coming to the end of this sad story, but fear that may be the case. Things didn’t go as planned for us today. The MRI proved inconclusive, so they still think there is a high chance of something in the hip. They biopsied it in two areas, one of which was a new area on the hip, so I wonder if the MRI spotted something. The blood boil thing is just getting beyond a joke it is bigger still. It smells to high heaven as well. I am putting silver dressings on it in the hope to calm it down a bit. The worse news was to follow though and that is that the chest CT scan does indicate that it has spread to the lung. It is a small section, but there is something there that wasn’t there before. They feel that is a very high chance of spread. We will see the experts in Bristol a week on Thursday for the biopsy results, unless they email them to us, and they will do another chest x ray to see if the lump has grown. So we won’t have any actual news until then. They can then decide what if anything can be done, it is all dependant on whether the cancer is back in the one or two places, one maybe treatable, but probably only palliative, if in the two places, well still palliative, but even less chance of success. There is a high chance that chemo will be used… but they will need to decide on that. It took two appearances in the leg, and an appearance in the hip, that was spread by the surgeon and not post treated before it got to the lung. So I think I can safely say they, or one man, did all he could to spread it and he has succeeded. I will be watching out for him in Hell. He had better be a bloody fast runner. I sent the nuts and bolts of what is happening to Lee, the oncologist in the USA, she said “I'm so sorry Tony. I wish there was no need for further treatment. Get Sue whatever treatment you can and make them do it right away. This attitude of ...wait...and let's see is what caused this to begin with.” 20.4.10 – In all honesty at this stage the impact has not hit home yet, I don’t think that will until we see them next Thursday for more news etc. Even then it may not…. But then we will have hospitals galore, but bring that on I say. We are carrying on as usual at the moment. The hardest thing is when you do something and subconsciously think one day, in the dim and darkest future, this will potentially be done alone, no one to bounce my stupidity off, take the Mickey of, compliment, admire and adore. Alone is a very scary word right now. So I wont go there, being positive it wont happen, instead I thought I would put a happy history lesson in here, tell you how we met, what we did and where we went. It’s just that from now on everything is tinged with sadness, there is a laugh or a broad smile then an empty pit in the tummy. So it will be a short story. Well, you know my short stories. We are working on the pond build together, so I feel that is helping to take Sue’s mind off this a little, but not a lot. She has thought of a few names to call the koi. Let me back track to 1999. I knew a girl until May 1999 many miles from me, but it wasn’t going anywhere, hadn’t really for a handful of years. When I ended that I was quite keen to find a soul mate, someone to love and be loved by. As I am a quiet person, Sue objected to that when I read that to her!, who doesn’t go out a whole heck of a lot I tried a small dating agency where you wrote a few lines about yourself and who you wanted to meet. I sent mine off in July, and Sue being Sue was too late for the July issue, but made September. All the miserable sods to whom I wrote deemed not to reply, can’t imagine why. The next magazine was issued in September for another crack at the whip. Sue was in that issue, and the poor devil was daft enough to write back to me. Speaking for myself when I read Sue’s letter I was smitten. Desperation probably, at last someone wrote back!! Sue sent a photo and I thought what a beauty. I was scared stiff to send a picture of myself, so I put it off for a couple of letters, then bit the bullet and hoped that Sue was long sighted. We communicated for weeks, I seem to remember writing to a few others as well, and I rejoined, and straight after rejoining something hit me. Money! I thought why did I waste my money on rejoining when I was having such fun writing to Sue, I didn’t need anyone else to write to, so I cancelled my membership and got a partial refund. Funny the things I remember. We spoke before Christmas, maybe starting in November, it is a long time ago, and I remember ringing Sue’s number feeling sick to the stomach with fear and trepidation. Her dad answered the phone and I thought my golly he’s a miserable sod. He was very polite but very abrupt, probably thought who was this man after his daughter. He still answers the phone this way – so it wasn’t me. I remember working on my pond on Christmas Day 1999, the iris had grown out of control on my waterfall and need chopping back a bit. Mum was doing the dinner, and Sue just told me she thought she ought to call me or the miserly bugger, that’s me, will think I am calling her all the time, now would I ever think such a thing. Instead I was probably thinking can’t I even get peace on Christmas Day. It was seriously one of the most wonderful conversations I ever had, and I was really chuffed that Sue had taken the time out of her day to ring me up. I don’t think we had chatted much prior to that occasion. It was the first time that my mum and Sue chatted. Just a note here - you may have to read between the lines of humour through out this. We continued to write and chat, we would chat for hours on the phone, sometimes well past midnight. We never wanted to put the phone down. I showed Sue a trick, I would say “say bye” put the phone down, then pick it back up and I will still be there and I was. So we would say bye twice sometimes. Sue made the journey to visit me in March 2000 on the train. It was a Friday, Sue was due to stay the weekend – in a bed and breakfast – aw shucks!! I remember it well, I had my trusted old dog, Sasha with me on the back seat, we drove out to Bristol Templemeads station. I think the train was due in at about noon and naturally I made sure I was there with time to spare. As I drove past the station entrance I saw a plump but attractive young lady sitting on a bench outside the ticket entrance, Sue had caught an earlier train, she was keen. We have many times joked about this and what follows, so please remember this is tongue in cheek! I did not recognise Sue at all from the picture she sent. So I parked the car and waited as I was, I thought, early. After a few minutes this lady got up and walked towards me – I nearly legged it. But stood my ground. Sue introduced herself and I thought what a wonderful lady, but a little plump. The weekend was already planned, but it has since become a running joke that I did it to make Sue shed a pound. Now, would I do such a thing! I drove Sue to the bed and breakfast, she had left her pen behind, but thankfully I had one so she could fill in the form. I took her and Sasha to the local park to stretch their legs. I really wanted to hold her hand, but fear kept my hand at bay. I was totally smitten; it was virtually love at first sight. Well, I had some feeling in the tummy, might have been wind. I cooked for Sue that evening at home and took her to the cinema, then back to the bed and breakfast. I took Sue to Bristol Zoo on the Saturday and we spent the day walking around there, again my hand was desperate to hold hers. We fell for the meerkats. I would in time propose in front of the meerkats. On the Sunday I took Sue to Glastonbury Tor, then to Cheddar and walked her up Jacob’s Ladder. I guess that was about a pounds worth. On Monday I walked Sue and Sasha around the local park again, on the way out my hand wanted to take a hold of hers, on the way back it did, and it didn’t let go until the end of the walk. I drove Sue to the station, we had a hug on the platform, at Sue’s instigation, to say I was amazed was an understatement, so I took full advantage and kissed Sue on the cheek. The emptiness I felt as the train trundled off is the emptiness I fear for the future, but a million fold. I was miserable the rest of that day. Sue later told me she missed me, but feared that I may have not kept in touch, so went with an open heart. Mine was beating twenty to the dozen and I could not wait for the next time we met. Meanwhile there was the post and the phone. She was one of the most beautiful girls I had ever seen. 28.4.10 – In a way we want tomorrow to hurry here, but in many more ways we don’t want tomorrow to happen. I awoke this morning with my heart pounding. The Bristol Oncology Centre is the worst place for me, as it is the one most closely related to cancer – to me it represents death – I hate it there. But it ought to represent life, the relieving and preserving of life. But, I still hate the bloody place. 29.4.10 – It is back in the hip, the biopsy confirmed that, and that is what they think the blood boil thing is and there are two small lump things on the lung. When we saw the consultant last week he said they would see us this Thursday, so when the appointment arrived we saw Thursday and a time. So we went today. Sue was not on the records, so we looked at the letter, it was for next Thursday, a week later than we had thought!! Just as well we did make the boo boo considering the news, also they plan to start treatment as a matter of urgency in the next week to 10 days – lets see. They took blood.  They will do a heart test sometime.   They will use Doxorubian first.  They used that with Ifosfamide the first time, I think.  They said they will use the Dox... by itself for a few times and see how it goes... as outpatient for an injection, every three weeks.   If that doesnt work, ie the Dox... by itself, then they will try Ifosfamide, which is given over three days I think or Trabectidin which is given over a day and or day night, can take it home, or a clinical trial of Cisplatin +/- a trial drug.   They gave 15cm by 15cm Mepilex Border Light dressings, will try those, as the blood boil area thing is getting red and sore, not to mention a lot bigger.  The blood boil thing probably is the cancer, what is under it certainly is and they wont be removing it, certainly not anytime soon.... if at all... they will see if it shrinks with the chemo!   Picking dad up from Heathrow tomorrow, he had extra 10 days in Arizona due to volcanic ash, then will take Sue to Cambs for a long weekend.   We still cheerful and happy.  Only way to be really!! 11.5.10 – Sue is really annoyed, they are saying they are rushing treatment, but treatment starts on 18th May. So no rush then. Still, nothing new there. The appointment is for 8.30am of the 18th, we are told it is an early appointment as they didn’t want to delay treatment. Oh well, we will just standby and watch the cancerous blood boil thing grow, it is now over 6.5cm by 4cm by 3cm high, just above the groin area. If it is that big above the skin surface, wonder how big it is below the skin. It must be pressing on the bladder, as that is weaker these days. We are so cynical of the treatment and what they say and want to do. I know there are millions of others looking for treatment, that part of the problem, too many sick people… but it is not an excuse. I took a photo of the lump when it was 2cm big four weeks ago and then another one yesterday when it was 6cm big and sent the images to Lee. This is what she said… “Tony,
I looked at the email and pics. OMG...poor Sue. What is wrong with those idiots...they make her wait yet again.
Keep after them...make them do what needs to be done and as quickly as possible. That lump is their fault!
Lee” Here is another run down of the last TWO months and what we, and probably others, are having to put up with. We saw the consultant at Southmead on the 17th March 2010 and he saw the chest x ray and saw something that was not right. Chemotherapy starts on 18th May 2010. That is TWO months LATER. Or worse in weeks, TEN WEEKS later. I feel that is unacceptable. Cancer has been growing in my wife’s lung for 10 weeks plus and they saw a suspicious something in the x ray. The old consultant who is responsible for most of this mess, IMO, arranged for a CT chest scan on 8th April 2010, but that was THREE weeks after we saw the new consultant who felt there may have been something on the x ray. When we saw the consultant, in March, the wound was clear, we saw the Nurse Practitioner on 23rd March and the wound was clear. The blood blister thing appeared within a day or so of that. My first image was on 4th April, so we can narrow the appearance down to about the 26th March or just before. We saw the consultant about it on 12th April and an ultrasound was performed and the radiographer was very sure it was the sarcoma back. I wonder why a biopsy was not done there and then. Thankfully an MRI was done promptly the next day. But proved inconclusive. Then a week passes for another ultrasound scan and finally a biopsy on 19th April. (Presumably) the consultant discusses Sue with the chemo doctor on Monday 26th April, we see him (a week earlier than the appointment – we were amazed that the appointment was as “late” as it actually was) on 29th April, we were told that treatment would be rushed by a nurse, she read it on the form, and be started within 7 to 10 days as a priority. One of the sarcoma nurses tells Sue that she has had a few months respite from the sarcoma, that did not sit well with us. But we would like to thank her for reminding us that we had a few extra months together. I thought that once cancer was diagnosed they had specific time frames to work to. The CT scan was done on 8th April, that was SIX weeks before chemo due to start. I wonder if 6 to 7 weeks is an acceptable time frame for starting treatment on a sarcoma, bearing in mind the x ray was three to four weeks previously. Still, we should be thankful. Remember these waits… September 2006 to March 2007 = 6 months. September 2008 to February 2009 = 5 months. WOW, saved a month. June 2009 to September 2009 = 3 months, bloody hell, that was superhuman fast. March 2010 to May 2010 = 2 months, WARP SPEED!!! So I guess they are getting quicker. And yes, that is dripping with sarcasm. Another good friend, Kim, wrote “I just can't believe how long they keep leaving doing something about treating Sue!  What is wrong with these people?  Have they given you an explanation as to why treatment is starting 2 months later?  Really sorry to hear about the delays yet again although it sounds a bit scary how quickly the blood boil is growing. It's bad enough they messed up the initial diagnosis and treatment but this is just insulting now.” No reason given, but worth asking one day, see if we get an answer… 15.5.10 – Sue has a temp of 38 degree’s that is in excess of 100 late yesterday afternoon, but we managed to bring that down to normal. We will see if we can keep that down. As it is the weekend, nothing will be done in any event, so as usual we are on our own, waiting. Forever waiting for them to move their backsides and start treatment. The blood boil cancerous lump on the outside of the hip / groin is wider than long now.  It is now 7cm wide (or long now!) by 6cm long (or wide!!), it is at least 3.5cm high. So I would definitely say, without any doubt at all that it is growing by 1cm a week.  It is worse than any horror film; the smell alone is off putting! I do so feel for Sue, she says to me that she feels sorry for me having to put up with all this and to have to contend with dressing it, put simply, I would have it no other way. Indeed it is me that feels for Sue. 18.5.10 - They did a blood test when we arrived for the chemo and discovered, what a surprise, that the blood count was down to 8 point something. Normal is 12.  Worse was that they discovered there was an infection in the blood, I could have foreseen that weeks ago, they gave a reading of 206, whatever that means.  When they tested the blood nearly three weeks ago that reading was 190.  So to me it sounds as if there was some sort of infection or the potential for one, esp with an open blood boil thing! They decided that they cannot do chemo at this minute, so have rescheduled Sue for next Tue same time.  So they CAN do a squeeze in, shame they didn’t do that a week earlier!!  Or Weeks earlier!! So we spent 5 hours in the hospital waiting for blood results and anti-biotics, something that should surely have been routine ages ago. So the cancer will now have been in the lung for 11 weeks, minimum. We could make a new film, Eleven Weeks Later, Sue could have the staring role as lead zombie! They asked Sue to have a blood transfusion tomorrow – funny ha ha!! Next Monday they want us to go to our GP for a blood test BEFORE we see them for chemo on Tuesday!  Why didn’t they ask for a blood test last week! When I hear back from Lee in USA I will update pbase. I will be sending an email of “complaint” to them and also to our MP.… this is just stupid!! 19.5.10 - They did a blood test yesterday prior to letting us leave, that was a pre blood transfusion blood test for today’s transfusion at the local health centre.  Today’s transfusion was cancelled, when we arrived, and re scheduled for Saturday.  Reason, the test found antibodies and they wanted the transfusion done in the hospital in case of problems not the health centre.  So just another delay to contend with…  why oh why are they leaving things so late in the day!  This should have been done weeks ago… Tony change the record or shoot the parrot, ‘cause they not listening, Sue feeling rock bottom, she gets the impression they have just given up. Thank God, well, thank someone, we still have a sense of humour. 21.5.10 – But the sense of humour is getting thin. Sue is losing control of her bladder and her bowel, they just go when they want it seems. Sue resents all that she is being put through as this should have been sorted ages ago. The lump on the hip groin area is now 7cm by 7cm by 4cm high and for the first time the area under and above it is now painful, so the tumour must be spreading under it, pressing on the bladder, probably pressing or encroaching on the bowel and having a right party under there, all the while the drs do nothing, they just wait and see what will happen, well, that is what it seems like. We learnt today from another medical report, that the old consultant surgeon who removed the original lump from the leg in June 2007, left a bit behind, it was the vascular surgeon that spotted that and removed it. Thank goodness for him, or they would have just stitched it back up with tumour left behind. Sue has said that when she is in heaven she will give St. Peter the day off when the experts die that let her down, and she will stand by the pearly gates and have a jolly good chat with them. I would forsake the chat. Let’s hope that the blood transfusion goes smoothly tomorrow. We are into our tenth week of them suspecting something on the lung, from 17th March, and sixth week, from 12th April, of them suspecting something on the hip from when chemo starts, if it starts next week. When it actually starts it will be the eleventh week. 22.5.10 – The boil thing is now starting to break down, it is getting jagged ridges in it on the surface of it, it is red and ulcerated on one side and leaning. So it appears to be growing out and over, like a mushroom, and just as deadly as some toad stools I would guess. I use a carbon dressing which helps with the smell a bit. But it still smells of rotten meat, worse than bad milk. It turns Sue’s stomach, not to mention her nose and eyes. I have found a pretty good way of dressing it which means it will go 24 hours between dressings. It is getting much more painful, and climbing stairs is now worse, she went up on her bottom this evening. If they had been more organised and had started the chemo on time, or earlier then it would have had a chance to act and prevent it growing as much and causing as much discomfort. The blood transfusion went ahead and was fine, took 5 hours including the usual waiting. No issues there. Other than why was it not done a couple of weeks ago. I am going to buy a parrot and train it to say are you ok, as I keep asking Sue that, she said if she says fine then she is fine, now how we interpret fine is up to us. If she is in strife she will say. But I just have to ask. 26.5.10 – Chemo started yesterday despite the infection still being present, but just as well to try to sort the cause of the infection as the infection itself. Sue still on anti-biotics, so that should fight off anything. Sue actually feeling much better, all things considered, it may have been the Metronidazole anti-biotics making her queasy. She off them now. Also the fact that they finally got started on chemo must be a boost, it certainly was for me. We go back to the hospital tonight to have the heart checked. 27.5.10 – They found Sue’s heart, it is still there and in perfect working order. If anyone reads this and wants to make contact, feel free to do so. One person did email me, but I did not see the email until a few weeks later as I don’t check the email that is associated with pbase very often, so if anyone does email me to save me keeping you waiting, can you just put a comment, like check your email, on pbase, tick the private box next to add comment, no one else sees it, I can make sure I read your email. This horror story seems to be reaching a few people, and it shows there are many worse off out there. All our hearts go to you all. 28.5.10 – The pain is back, Sue is back on the commode downstairs and climbing stairs is too painful. She goes up on her bottom. She disappointed as she was just about managing to go up normally, but the lump is hurting. 29.5.10 – We managed to pop into my dads shop this morning. The stairs were again a bit easier this morning as well. Maybe it gets rested by night. It is tender on the belly, so god only knows what is happening to the tumour in there. Just above the boil thing it is swelling up under the skin and is very tender. We watched The Descent 2 with our lunch, well lunch was finished quite early on, thankfully. Sue quite enjoyed it, I think she used to those films by now. I think she felt sorry for some of the characters, but questioned why anyone would go down there in the first place. Sue is getting VERY frustrated with the drs for not acting sooner, her health is suffering, and she feels she doesn’t have as much fight in her as she had a few weeks ago when the lump was smaller and when there was less infection in the body. I think it is that that makes her sad, she feels they let her down again with these incessant delays. They have once again let the lump get big and cumbersome to deal with. It makes her life so unpleasant. But hopefully she will bounce back again soon, the weather is miserable, so that not helping. 30.5.10 – The horrid dead floppy bit of stinking dead flesh that was hanging from the main boil came off today with the dressing. So that leaves us back where we were, no floppy rubbish, just one mother of a lump on the outside, like Ayers Rock, just sitting there. Mind you this piece of landscape is getting bigger, 8cm by 8cm roundish by 5cm high now and I don’t fancy climbing it. We also recently saw Iwo Jima with Mount Suribachi and Sue said that I could not put a flag on her mount. 1.6.10 – We saw the Drs today, they comprised a plastic surgeon and radiotherapist amongst others. But let us not get excited, it was what we expected, a routine appointment to reaffirm what we already knew, the inevitable end. But we will still hold on to what we have and fight to keep the end on the end of a large barge pole. They said that the lump on the hip may just keep growing even on chemo, but there is a chance that the chemo will hold it where it is, shrinkage is a hopeful but remote possibility. If it did happen then they could potentially remove the lump, put a bit of skin from elsewhere over the hole, but it would only be a patch up job, the sarcoma would just continue to grow under, and out. The little lumps on the lung they are hopeful they may shrink, but whether they actually go is a different story, and even if they did, others will pop up in the vicinity. So to coin a phrase, we’re all doomed, doomed, I tell ya. But bugger doom, she can sod off and hassle someone else for now. For my Sue is still alive and kicking. She has a good day, usually followed by a lower evening, tiredness I guess and fedupfulness at the situation, she just keeps asking, was all done that should have been done as quickly as it should have, well, if you have read this, then the simple answer is (IMO) NO. And it is THAT that hurts more than any cancer. That is a cancer eating away. At least there maybe a remedy for that cancer. Revenge is best served cold. Maybe we will have to turn the freezer on. If nothing else, we can put the ice cream that Sue requested in the freezer. If I sound bitter, I am, bitter and cross. 7.6.10 - We going downhill like a skier. Well, it’s not quite that bad, but not brilliant! The fact they once again delayed treatment really has put us back, I fear it will cost us dearly. Sue did respond in 2007 to the chemo, it halted growth in its tracks, but they hit it with two chemo’s at the same time, this time they are using one only as palliative, and of course it once again got a chance to grow, so the one chemo she had 2 weeks ago is not stopping it – yet. There is another next week – lets hope that helps. The lump on the hip is growing, I am sure, not measured recently… but the dressings seem to be not quite making it, and I need to keep adding other dressings to help hold it down. It once again stinks to high heaven, I think there is another dead bit, that will come off one day, but not for a week or 2. Her temp is playing up a bit, we went to see her parents in Cambridge, we were due back tomorrow, but as temp went up we came home today, we will call them tomorrow and see what they say do. It doesn’t stay up, it drops after a short while, also it seems to rise in the evening, when Sue at her lowest. They will probably want her in for a few days, I know it is for the best, but it is a pain and when she goes in getting her out is a right pain in the arse. I hope they give some tablets to help. I think that bloody growth is the hot bed for infection and whilst that there always will be. But they don’t seem to want to make any effort to remove it. It is defiantly growing under the skin, the belly is getting pushed up a bit, noticeably just below the belly button. So we waiting for next chemo and hope that that does something, a few strands of hair are on way out, but mostly holding firm, so far. She so pissed at the delays! That all she says, why am I going through this again with a massive lump. I fear it has really shortened her time with us, she doesn’t think she will make this time next year, cant argue TBH. I want to get her to my birthday in August, our wedding anniversary in Sept, and her birthday in October and of course Christmas… lets see. We are living day to day. I sent my letter of complaint to the MP and PCT. I had reply from PCT thanking me for bringing it to their attention, these last 11 weeks, let’s see what happens. Won’t help us now, but let’s hope that it helps prevent others suffering the same fait. I am ok in myself, was very sad leaving Cambs this morning, and looking at my beautiful wife is now breaking my heart. When her dad gave her a great big bear hug, I nearly soaked the carpet in tears. I don’t show much emotion, but it is under their, as Sue said, waiting your turn. That might sound harsh, but we treating each other openly and with care, but being hard as well. I ought to carry on my story of our courting days soon. We will be applying for the exceptional funding that has been offered, but we have to sell ourselves as worthy. 10.6.10 – We saw the oncologist consultant today, he seemed happy enough that Sue still chugging along and said that chemo two can be done next week as planned. He said he will issue more anti-biotics at that time as well as Sue’s temperature still a little erratic, but with that horror on her hip, that is to be expected, I am now comparing it to an egg in the Alien films. Her blood count was down to 7.7, so that means another 2 units of blood next Wednesday, I think Sue is well peeved at that, as she was hoping that chemo next Tuesday would be her week of hospital with the other days as normal, or as normal as possible at home. Sue is now malting, she is my shaggy dog, the first chemo must be doing something, if nothing else it is causing her hair to drop slowly, but it is getting everywhere. 11.6.10 – Sue is now an ally to Sigourney Weaver, well, she looks like her in one of the Alien films, Alien 3, I think. Sue had a shower and to say the hair got into a knot would be an understatement, I tried to de-knot it but what came out left a bald patch, so she asked me to shave it off with my hair cutter. Sacrilege. Anyway, I now have a new girl, she is young looking with long sexy hair – amazing what a wig can do. This chemo whilst the same as in 2007 must be stronger, her hair lasted four courses then, just. The Year 2000, my first visits to Sue. OK, let’s get the dirt out the way, there was none. Sue being the lady she is offered her bed to me, and she slept on the sofa downstairs. I was honoured by her by bringing me a cup of tea in the mornings of my visits. I went twice during the spring summer of 2000, once May ish and once July ish. I would drive up on the Thursday afternoon, so be there for Sue’s arrival home from work, more often than not, as she worked just down the road from her parents house I would meet her and walk her home on the Thursday. On the Friday I would walk her to work, then walk Bess and Sasha. We would meet up for lunch and then again I would walk her home after work. We did what we still do on a Saturday, walk Bess, though these days I do that alone, then go shopping to the supermarket, then walk into town in the afternoon, what a surprise, we don’t do that now either. Sundays we usually went out for a few hours to a day. Sue showed me around the local area and we stopped in the rain under our tree. Another time we went for a drive, stopped by a lane or footpath and walked our dogs, Sasha and Bess, we had great conversations that were open and honest, if we stepped on toes we would both brood for a day or two until it was brought out into the open. I remember getting back to the car, my old Cavalier, and making tea and watching the Red Arrows in the distance, many miles off perform their heart manoeuvre, we commented on that being a fitting end to a wonderful day. I will just mention the tea in car business here. Before Sue met me she always bought tea out, but the one of you that knows of my reputation will know that I am a bit tight, so I taught Sue the virtues of taking your own tea and having where and when you want. Also my tea tastes a million times better than the stuff you buy. That’s not to say that we don’t have the odd bought tea, but my moths rarely fly on those occasions. On the Monday I would walk Sue to work, and then walk Bess and Sasha then drive home, one miserable sod, missing his girl. 16.6.10 – Back to the now, for now. Sue had her second chemo yesterday, all went without a hitch. Mind you the nurse doing it, the same as last time, didn’t bring out a small electric blanket for the arm, last time Sue was told this was essential to keep the veins open whilst the chemo goes in, this time the same nurse forgot, then when prompted by Sue asked if Sue would like it. Sue has to have a blood transfusion today, and being the gentleman that I am, I will stay with her, for a short while, then go off and watch Black Death with Sean Bean at the cinema. Well, it is only an hour and a half. Her blood count is down to 7.6, so I guess that indicates that the cancer is still alive and kicking, and that is confirmed by her belly rising with tumour under it. This is pressing on the bladder, and that causes personal issues, like a dripping tap. Sue is feeling tired more often, but eating and sleeping fine. Let’s hope the second chemo kicks ass. I still try to treat her the same, I still snuggle her, tickle her head, kiss her and keep her close and tell her all will be well. I will tell you something, the second I finished that last sentence an upstairs door slammed shut, and there was no one upstairs. It is a sign. I think our house has a soul. Also the last four days I have looked at my watch and it has said 11.11. When Sue was trying to recover over the last year or two I have gone to bed and looked at the bedside clock, often, too often for coincidence it would read 22.22. On Monday this week we went to the Forest of Dean, and I walked Bess on a new walk there, about 3 miles, takes me about ¾ of an hour, so it might be a bit less than 3 miles. There was a sad moment as Sue said the sad thing about that walk is that she may never get to do or see it. There are stiles both sides and it is too rough for a wheelchair in any event. That will be the first walk that I do whilst Sue is around that she won’t see. I ought to take my camera so she can share it. It would show lots of trees. Walking, that is another story for another time. Walking. A story of walking, from me going around the local park five times with Sasha my dog, to both of us, Sue and I, and our dogs, walking on Dartmoor and around Cheddar, Brecon Beacons, the Lake District for Honeymoon, and Scotland, our last big hurrah. But how did it start, it was Sue’s fault, honest. When Sue moved in, in November 2001, Sue said she was getting a bit bored with walking around the playing field five times. Also I think we both wanted to try to lose a bit of weight and get fitter and healthier. So we found a small local river walk and did that, but my mind, as usual, wondered, fuelled by Sue talking about walks she did when she was younger and the walking clothes that her group leaders used. So naturally it became an excuse for a new wardrobe of walking clothes, but where to walk it, after all we needed somewhere to field test it. I suggested Cheddar first, we had already been there so it seemed a great first test of how far we could walk. The walks started out as around the local tourist walks, maybe 3 or so miles, but that soon got too easy and quick. Mind you, we made the most of those three miles, we would stop for tea and a nibble, it was always done properly. As the Cheddar walks got a bit longer the nibbles got more adventurous, we took rolls as usual, we could never be accused of starving ourselves on a walk, but we started to take a tin of rice pudding, but that is best hot, so in went a small burner and cooking pot. So we would stop for rolls one side with tea and then hot rice pudding and more tea on the other side. I don’t think we were that successful at losing much if any weight for quite some time. I need to try to catch up on how we got on and how Sue moved in before I tackle Dartmoor, or I will be well ahead of myself. In all actuality all the walking stuff followed when Sue moved in, which was after a holiday to Florida in September 2001. So let me back track to August 2000 and then how Sue asked to move in with me. 21.6.10 - Sue struggling today, lump on groin / hip getting heavier and pressing on lower tummy area, so she struggling to get comfortable and getting about is more problematical, also the chest is getting tight now, so that presumably is the two lumps on the lung.  Darn doctors, leaving things so late, as usual. Rabbit rabbit rabbit!! So I guess it means that more chemo needed to even attempt to stop it growing, and of course we told they can’t operate on it, so Sue might be left with this large heavy lump, even if the chemo does kill it, or slow it, we know it won’t shrink it. Between then and now, Sue was struggling this week, getting breathless and not being able to keep her food down, well what food she was eating, her appetite has nearly gone, but she eating a little. I think it is the anti biotics that are causing her to be ill, as she is fine until takes them. She has not been herself all week. 24.6.10 – Sue back in hospital, her lung has collapsed. Hopefully it is not too serious. Sue had an x ray on Tuesday, 22nd, and the GP called at 9am today, Friday, to tell us it was pneumothorax and that we had to go to the hospital for another x ray and a consultants opinion. We got to hospital ward at 11am and saw consultant at 6.30pm. We did see a doctor in the meantime, at least. At this stage there is a little confusion in my mind as to whether this is due to one of the nodules of cancer piercing the lung and allowing air out and hence lung to collapse or if caused by something else. As up until the end of today, I did not leave hospital until nearly 7pm it was the former, that is what the doctor was saying, but when the consultant saw us I asked if it potentially would not get better, better being as good a word as I can think of, as it, the cancer, won’t ever get better, once the chemo got to work. But he said it was a separate issue. I was allowed to look at the x ray, and the nodules are not that close to the collapse. They think it has improved slightly from Tuesday’s x ray. They will do a blood transfusion tonight and tomorrow, as her blood count down to 7.5. Should be 12. They did a transfusion less than two weeks ago, that indicates to me the cancer is still active and the chemo is doing bugger all so far. They also suspect another nodule on the right lung. That also backs up my sad theory, as that was not present a few weeks ago. So, they also giving her oxygen tonight to see if that helps lung, they think it might, then Sue might be out tomorrow afternoon, if it doesn’t work, she will stay in whilst they think of something else. We have had an interesting discussion about animals, pets more to the point. We have both agreed that if Sue was a pet, we would have had it put down by now. This is not as daft as it sounds. A vet would firstly not leave an open growth to stay. Secondly, they would say that the growth underneath is inoperable, it is pressing on the bladder making the animal incontinent and that there are growing cells on the lung which has now partly collapsed. Thankfully Sue is not a pet, as I would not ever consider that possibility for a human, in Sue’s condition at this stage where treatment can help her quality of life, whilst not like most, is at least palatable, she is not a vegetable or in massive pain, clinging on to life by a thread. She is able to enjoy her time left. This attitude might change further down the line. But humans are not allowed to do that. We are bitterly disappointed with this new development, as we had been chugging along reasonably well, all things considered. But I suppose these things catch up with you in the end, trying to avoid staying in hospital. Once again leaving Sue behind was not at all pleasant. It is a horrid feeling as I want to get out of the bloody place, but don’t want to leave her alone in it. At least I had all day with her there. I made myself at home. I took my flask of tea, and pinched one of Sue’s sandwiches, well, she only wanted one, shame to see the other go to waste. I had one of her potatoes from her evening meal there, but it was dry and tasteless. A nice splattering of pepper and gravy, now that would have turned it into a work of art for the tummy. 25.6.10 – I saw Sue today, it is a real rollercoaster. One minute there was a slim chance she would be home when I spoke to the doctor, I cornered her like a rabbit in headlights, the doctor said when blood done Sue might be able to come home, but the blood would not be completed until late into the night, if it even got started, then no chance of a homecoming when the reality started to sink in. There is a chance tomorrow, but tomorrow is Saturday, I can’t see her getting released until next week at this rate and it is all dependant on the lung x ray. Such a pain in the neck, or in this case, lung, but it is not painful, just the experience is difficult to take. I planned on seeing Sue about 4pm today, but couldn’t wait that long so went in about 3pm, despondent. I went in in the wrong frame of mind. I always want Sue home, and when she can’t it does not sit at all well. I was a right miserable sod when I first started to chat to Sue after chatting to the doctor as all that greeted me was bad news and more bad news. Mainly bad news that they had not even started the blood transfusion that was supposed to have been started last night. They still had not started it when I left at 5.30pm. They did not do the x ray for today until about 3pm, to see how the oxygen treatment went. Of course I had a moan and groan as Sue seemed resigned to her situation and I was saying why can’t you come home. Hospitals always has this way of putting a bit of tension in the relationship. I hate them and want Sue home, she on the other hand whilst doesn’t want to be there accepts that things needs to be done. I like things done yesterday. When I suggested that they do one blood tonight and another time, ok daft idea, and then Sue said she wanted to stay in so they could do both it felt like a rejection, like she would rather be there than home, which is absolute crap, of course, but it is the way my mind plays havoc on me. Anyway, I was a bit cheeky a bit later and threatened to pop her oxygen bag like a packet of crisps, that made me smile, Sue said I cheer up when I am being horrid to her, in the nicest way of course. Things improved in my mind after that. At least the tension burst. I made a cup of my tea and all was well between us, as it always was, really. Emotions run high when things don’t go the way you hope. Enough of my moaning, what is happening. I asked about the air being away from the cancerous lumps on the lung. The air is caused by the cancerous lumps, but as air rises it is rising away from the lumps to the top of the lung. They eventually did an x ray this afternoon, but whilst there was improvement, so that good, it was a slight improvement and they want a significant improvement before they let Sue go home. So I don’t know how long that will be, let’s hope it’s soon. I hope that primarily as I am desperate for the next course of chemo to not be delayed. I will go in tomorrow earlier, like late morning for an hour or two. That will give me my drug, a quick fix of Sue. I should be ok to get through the afternoon then and try to enjoy a bit of tennis. Sue has four friends coming to visit from various parts of the country tomorrow. They were due to visit Sue at home, now it is a hospital visit. I have spoken to three of them and they are all excited about seeing her. Sue is eating better and feeling fine in herself. She must not do anything taxing, as that may delay the lung inflating process. Just take it extra easy. When I saw her with the oxygen mask and little bag under it it reminded me of The Empire Strikes Back when Han and pals are inside the monster inside the crater examining the outside of the Falcon with the face masks. Her temperature is ok and they have taken her off the anti biotics she was on. 26.6.10 – am I woke up with a heavy heart, pounding aloud beating like drums. My body wakes up much quicker and more alert when I am alone. I pre-empted the alarm by a couple of minutes, I did that yesterday as well. I made a tea and thought of Sue. I read a little, but it is not easy to concentrate. My mind wonders. I forgot to add one thing that I thought and said to Sue yesterday, in jest, well, you know me. When I first arrived yesterday and had a slither of hope from the doctor that Sue might get home after her blood transfusion of two units. All the transfusions that Sue has had up to now have been 2 hour feeds each. So a 2 unit transfusion takes 4 hours, plus the time taken to change the blood etc. I know this for a fact. When Sue was finally taken down for her x ray I said to the nurse that Sue might be home after her blood. The nurse said oh that will be very late as the transfusions are 4 hours each, I said that is new and never done before. She later checked the form and it did say 2 to 4 hour, so if it had been 4 hour bags, that would have taken all night. I asked to see the doctor again and said could they do 2 hour drips. Yes. Anyway, I will get to the point soon, a bit later after the consultant visited and said he wanted another x ray down, today, which was tomorrow when he said it as it was yesterday when he spoke, confused yet! So of course that meant that Sue would have to stay in Saturday in any event. He went and the same nurse from earlier walked past and smiled at us. I said to Sue, I bet she is rubbing her hands in glee that she was right and that they can now do 4 hour bags. Sue replied, slightly garbled through her face oxygen mask, something like, you have such wicked thoughts. But with a clear smile on her face. It was just such a vivid picture I had in my mind, apart from anything else, it made me smile. Strange what makes me smile. I had a couple of small communications from Sue this morning. All I know is that she has been moved to a different ward, at 1.30 this morning. She went on to communicate that I will just love the new ward. Now, many will take that literally, and think I will like the new ward, my mind, knowing Sue and how she phrases things and knowing her thoughts about my thoughts of hospitals, I wonder what I will be walking into. Probably Dr Frankenstein’s lair or something, I will probably meet Peter Cussing. Maybe I ought to take a clove of garlic, I don’t think I will bother with a cross, I will go straight for the stake. 26.6.10 – pm late evening. I saw Sue this morning, she looked well enough, considering, and she had a great day with her old school friends after I left. They took her outside, she was able to take her oxygen. The ward looked very nice and I was baffled what Sue referred to above. But it soon became evident. This is a specialised lung / breathing ward, so I will refrain from making references to Darth Vader. Ops, well, I am booked with a ticket to Hell in any event. The noises would driver me nuts very quickly, but I fear they might one day be noises that I have to become used to. Let’s hope that day is not yet. They did an x ray and the nurse looked and thought there was improvement from yesterday, so we can only hope so over the next couple of days to Monday when the consultants are back. The nurse dressed the wound, from my experience of dressing it I would give the dressing she took off 5 out of 10. It was appalling. I would give her effort 8.5 out of 10. We were told that a Tissue Viability nurse wants to look at it on Monday. I think they need to read notes and learn that we have already seen a plastic surgeon and a surgeon who have both said it is non removable, and is just manageable as it is. When I told the nurse who dressed it that it was cancerous growth I think she was very surprised. So it all shows to me that there are too many departments and that they don’t know the history. Where I can I try to fill them in. I seem to be getting a reputation. 28.6.10 – The trouble is I am being punished, as is Sue for my cruelty to Darth Vaders’. They want to get me whilst I am still alive, they can’t even wait. No idea who they are. The torment that is surging through my body is palpable, the tension unbearable. My knees ache, my head hurts, my heart throbs and my mouth dry, despite constantly drinking, tea and water. I am at a loss as to what will happen over the next few critical days. The good news is Sue is feeling better in herself. Her head feels fine her appetite significantly better. She is off the oxygen, they won’t be doing any more x rays for the time being, unless Sue gets short of breath or a tight chest again as, as of yesterday the x rays showed enough improvements, as I understand it, so we so close to a homecoming, but so far, getting Sue out of hospital is agonizing. It drives me up the wall. Drives me nuts. Every time it happens. I ought to be used to it. Nope. It tears me apart. I even had tears in my eyes twice today on visiting her. She has only been in 4 days, might as well be 4 weeks. Her temp spiked when a nurse took it – bugger, double bugger. I sent an email to one of the nurse oncologists from a different hospital, who has direct access to the oncologist to try to speed things up, it must have helped, but we still clinging on to a precipice, as she called Sue first thing, gotta grant her that. They put Sue on Clexane to prevent clots as Sue not moving much, I mentioned that, they moved her into isolation as she on chemo she susceptible to infection. I said that the cancer was spreading to other parts of the lung and getting bigger, she told Sue that if this chemo is not working they might have to try a different one. Don’t they ever wonder at their, can I say stupidity, oh I just did, at not starting it sooner Sue would be less likely to be in this situation so soon. If I had a bloodhound he would be hard at work. Sue was asked if she wanted to come home. I put that in my email. Her answer haunts me. She said when she “right”. I think it haunts her now as she still stuck there. I think she wishes she said yes, as this afternoon she told me she wanted to come home. Given the cancer in the lung she will never be “right”. She is now stuck as her temp went up a bit, she had a couple of temp spikes at home, it went up and down like a yo yo, but we kept them under good control, it never once went out of control. She was admitted for a collapsed lung, not infection, she did not have a temp when she went in. The oncology hospital also gave us anti biotics to keep it under control. Sue was on these as prescribed when she went in, but the lung hospital took her off them. Now she has a temperature, they have put her in isolation. But no anti biotics forthcoming. They have taken blood to test for infection, but may not get the results until Thursday. Yet they knew about her being on chemo and susceptible surely a few days ago. If her temp keeps going up and they don’t release her she won’t get to see the oncologist on that same day, Thursday, and if that the case will she get her 3rd chemo? She is in a different hospital. That appears to be part of our problem, the hospitals specialise in different things and are spread about the city. I saw Sue this morning, she was ok, but I was once again a miserable sod, I feel quite ashamed, but I really, really hate hospitals, seeing her there, thinking about her there is the saddest part of my life. It consumes me. I want to sleep in a corner, visit her, then just curl up again waiting for the next time, wondering, ever wondering when she will be home. These are days we are losing together. There is no question that I would much prefer her home and look after her myself here. I cannot imagine how tough that will be, but this is no picnic. I sit there next to Sue, not wanting to be there, but not wanting to leave not wanting to be home without her. Sometimes I wonder if the end will actually be a release. But I want the end to never come. How can you ever want to lose someone you deeply love? I get silly thoughts about kidnapping her. Like some action hero. God alone knows what the poor sod reading this thinks, but I have little thought for Him. I guess this is supposed to be some sort of therapy. If anyone offered therapy, they know where they can go. People say to me Sue is in the best place. I meekly agree, but inwardly I am thinking, nope she belongs home with me. Even my mum who Sue says I always listen to says she in best place, well, I am not listening, it falls on dead ears. Or is it a dead brain. I just drift through the days. I feel rotten for Sue and the predicament she is in. It is not all about me, though it is my story, so why not all about me. Seriously, it is such a strange feeling when I see her and others laughing and chatting in hospital, I have this mental picture that everyone in hospital should be miserable sods. That is far from the truth. I then sometimes find myself resenting them, thinking I am miserable why aren’t you? I find myself resenting Sue, if that the right word, bit strong, thinking why are you “happier” in hospital, why aren’t you clawing at the door to get out. Surely I would be. But Sue says you aren’t here, you might feel different. Must admit, I can’t see it. Hospitals are one of the few things that puts a bit of tension in our relationship. Not the best time, place or situation for that. You lot are quite safe out there, I am not suicidal, so don’t panic. You won’t find me at the bottom of my pond. The ward is now actually very quiet, no heavy breathing, it must have been a one off. Sue phoned me up this evening in tears, she said her temp was up again, so if they go by the 24 hour rule the spike of lunch time will be null and void and this is the new start for 24 hours, late this afternoon, lets hope it stays down. I fear the worst. Let’s hope it stays down tonight and tomorrow, or that we can get some dispensation. Plead to their better selves. Sue asked me to make direct contact with the oncologist nurse she spoke to, but she only works on Monday and Friday until 4pm, I dialled just after 4. That’s helpful. Thankfully I have the phone number of the oncologists secretary, so I will call her, presume a her, first thing tomorrow with a list of suggestions, not really demands, with a question or two interspersed. I fear the answer to every question or suggestion. OK, enough of me waffling drivel out my mouth. Maybe I am just rather annoyed at the situation. Shame this update so depressing, try to make them more cheerful in the future. 29.6.10 – 8.15am. Had a message from Sue, her temp was 37.9. Talk about cutting it fine. Let’s hope that stays below that all day then let’s see if they will release her. I will be calling the oncologists secretary soon, ask her to take notes. I think I am turning into a tea pot. Sue said that when the nurses come in they wear masks now so they don’t contaminate her. I replied and said I won’t say what I would like to do with those masks to certain individuals. Not that I have violent tendencies. Mum and Sue have said don’t be rude when you talk to them, I am never rude to them. Always polite and diplomatic. Mind you can’t guarantee that is what I am thinking or saying to Sue or mum! Sue said she slept ok, as did I. 9.05am – I tried at 8.30 when the phone is manned, or in this case secretaryied, but was told that she had had a flat tire and that she hoped to be in about 9. I tried but just answer phone, left message asking her to call back. If there is no call soon I will try again. 9.30am – Called secretary again, the oncologist is not in until Thursday, but asked if my notes could be passed to his associate radiologist, she knows all about us, or is the secretary could make contact with the oncologist and see if he can ask the other hospital to allow Sue home so we can see him on Thursday. It’s not as if we are going to run away or leave the country. Sue messaged me to say you always get one nurse who is less friendly – that is something to look forward to when I go in then. I get these visions of trying to drag Sue out whilst being chased by security and a mad nurse. 1.30pm – Sue home, and I am buggering off and leaving her for a short time. Well, it will give her a break from me, I have worn out a years worth of hugs and kisses. Sue is very well, she wondered up the garden for a look see. Now having her lunch. She cooling off after the whirlwind of this morning, me. The nurse apparently came in when Sue buzzed, moaned it wasn’t her section of the ward when Sue asker her to do something, Sue said, well if it wasn’t her department, she should not have come in. I got to the hospital about 11am and was confronted by the ward sister, poor lady didn’t stand a chance. 9.30pm – OK, head sort of back in gear, if that is ever possible. Someone said hello to me again by name today, I was wearing shorts, must have been the legs she noticed. As she was driving, I noticed she was blonde. I politely said hello, and thought who the heck that was. Wonder if it was the wife of the man who said hello a few months ago, she was sitting next to him, she was blonde, I think. Anyway, enough of me, Sue. I dropped Bess off at mums about 10.15 and had a cuppa, can’t say no to a cuppa, never know when the last one will be. Got to the hospital about 10.50. I walked into the ward and neared Sue’s private room door. Remember she had the private room so she was away from any chance of catching an infection or bugs. The staff wore masks. She was put in that room yesterday, that was Monday. She was transferred to that ward on Friday night, put in an open ward, with lots of other patients and staff about. Anyway, back to me nearly getting as far as opening the door to Sue’s room. I was stopped by the ward sister. I don’t think she had met anyone like me before, I suspect that most visitors don’t know what the heck is going on or why it is as she asked me did I understand why Sue was in a private room. I said yes, she is on chemo, she is susceptible to infections and why did it take until Monday to put her in that room. Poor lady. But I didn’t feel guilty. She then went on to say that the tissue viability staff were there to advise on dressings, I said that we had already been advised by the oncology and radiology nurses. I should have said that the dressing that I do are far superior to any that the nurses do. That is not a boast, but a fact. I have learnt through trial and error, not much error to be honest what works. Sue had a pad under her bottom as the dressing that they did leaked. Mine never leak. Anyway, I didn’t say that. We did not see any tissue nurses. It was clear that she was responding to my email from the previous day and that chats had happened between the staff. Amazing what an email can do. A phone call works as well. I told her that Sue wanted to come home, and that I had spoken to the oncologists secretary. She didn’t know that. But when the lung consultant saw us at high noon, he said he had spoken to the oncologist consultant. So I think my call must have helped. Sue was released there and then. He said that any temperatures were due to the underlying cancer, but to keep eye open for sore throats or fevers. He was a very nice man who spoke a lot of common sense. You know the sort of thing I have thought and said for ages. They had lost Sue’s medications, but as it was nothing we could not replace easily, we said don’t worry about it. Sue dressed in quick time and I whisked her out of there faster than a hurricane, or was it a spitfire. There, that’s a bit more cheery and daft. Good to have the old bird back home again. 1.7.10 – But not forever. As we already knew the lump on the groin was growing, the chemo was having no effect whatsoever, so today they decided to stop the chemotherapy. So can’t add much more than that at the moment. But what the heck, let’s go back to August 2000 when Sue visited and stayed a week with me. Must admit I can’t remember a huge amount of that week. Naturally I remember one or two things. One that is talkable was a surprise trip that I took Sue on. She and her parents bought a guest house many years ago when Sue was about 6 to 8 years old, sadly the venture went under, but the memories of that time were still quite vivid for a youngster, so I thought why not take Sue back there. I could have just told her, but what was the fun in that. So I packed a packed lunch and tea and off we went. South. It was not until nearly there when Sue twigged. We went to the zoo first, then the beach, then Sue showed me where the guest house was. A wonderful day out. I asked Sue and neither of us can remember much else other than that. She must have knackered me out then. I spent Christmas Day 2000 at home, but went to see Sue on Christmas night. That’s right, I left home at 6pm Christmas Day and drove 180 miles to Cambridge. That is vivid as I had car trouble, getting there about 11pm, probably two hours later than anticipated. I would visit Sue many times over the following months, and Sue would visit here as well. Much of that time is a blur. We remember visiting the White Horse, walking to it and then heading home to have a barbeque with my father at his shop. I remember sitting with Sue in a park in Cambridge, probably spring or summer time when she brought up the subject of moving in with me, to say I was gobsmacked would have been an understatement. I was totally taken aback. I must admit in those things Sue was quite forward. Sue sent a text message in July 2000 saying “I love you”. I was thinking of doing the same, but Sue got there first. Naturally I replied in kind. Sue said or asked if she could move in but she wanted a test to see if we were compatible. Well, ok that is probably very badly worded. My mum had bought some tickets for a trip to Florida, she offered them to Sue and I and off we went in August 2000. Amazingly, we had to rebook, as Sue’s old boss decided she wanted her holiday, despite Sue having booked her weeks previously, so we had to reschedule, that actually benefitted us, as we went a week earlier, obviously came home a week earlier which was just before September 11th. We had two glorious weeks away together. I hired a car, and drove Sue to all the great places. We stayed in Kissimmee. No kidding. I loved the driving in the USA. Went to Gatorland and I revisited Stumpy. I had seen him a few years previously. A gator with a bit of a leg missing – how ironic! We had a ship night ride to the Bahamas as part of the package, a day there then shipped back to the mainland. I remember crying as I left the Everglades, that was so sad. Always hated leaving a place. Always hated saying good by. Didn’t miss the mosquitoes though, they bit us to death around the ankles, I can still feel the ice cubes cooling the ankles. We saw wild baby gators in the Everglades as well. We hit it off so well that when Sue got home she waited less than a month, then gave in her notice and moved in at the end of October 2001. 4.7.10 – Just to make it plain and clear, as my last update just said that chemo was stopped. It was stopped as it wasn’t working. So there is no more treatment now. Sorry if that comes across as heartless, not intended, but I don’t want to give false hope. There is now no hope whatsoever. The oncology centre has basically wiped their hands of us. All they and I can now do is try to make Sue as comfortable as possible for whatever time we have left together. I feel that August is very probable, and September quite likely to see Sue. So I hope we make our sixth wedding anniversary on 26th September. Sue’s 43rd birthday early October looks quite a way off, but my expectations are high. But on my fingers that is three months away. I have been saying sh*t to myself a lot recently, and that word fits in there quite appropriately to be honest. I am still cross that things were delayed with this last treatment, it appears to have cost us many months. We have not been given a time, I am just speculating. But I know how quickly this thing grows unchecked. Sue as usual is very strong, and I am the weak and feeble one, I just look at her sometimes now and burst into tears. Sometimes it’s a thought or comment that sparks me off. I have heard people say, but they are in the minority, of one or two, that one must forget the mishaps that the NHS have done and get on with life, but given that they have done many mishaps that is not easy. I have always defended the NHS, but this time they have cocked things up badly from start to finish. IMO. But my opinion counts for nothing. For now I will concentrate on Sue. Sue’s appetite is very small, mostly it stays down, but that is not a given. I have taken her out a couple of times short distances in the car and I hope to get her to her parents soon. I took a picture of Sue, now on pbase, sitting by the wildlife pond of our pond build. 6.7.10 – Those of a weak disposition skip this paragraph. We saw the nurse practitioner today, and she asked the doctor to pop in for a look see, the blood boil thing had this morning pretty much disappeared, leaving behind an area of flesh the size of my hand. It was dressed by the NP, and it leaked massively this evening. I will hold my hand up and admit that even mine have leaked a bit a couple of times. But this just poured out, down the loo. I am sure it was from the dressing. I had no choice but to remove the dressing. I can now see inside Sue. The cancer has eaten away at her flesh and rather than being a boil up, it is now concaved down inside, didn’t measure it, but a cm down I recon in a place or two. I put loads of swabs on it and a couple of dressings; I dare it to breach that. I suggested Sue showered, we are told it is ok to shower it, tomorrow, clean it up and redress it like I just did. The NP prescribed some Sorbsan cotton wool like dressing, it is about 40cm long, very thing, it is sterile and comes in a little pot with a little sterile poker for probing it inside the flesh. I will try that tomorrow. Keep you posted on how that goes. I was asked if I was still ok with the dressings, you bet. They would have to fight me off. Anyway, it needs doing twice daily now and it needs doing when it needs doing not when someone arrives. Oh, the smell of it as well. The bizarre thing is when Sue had the amputation and the wound opened up they used this Sorbsan to pack it out, I said if they realised Sue could I do that at home, the nurse, a bit of a, well whatever, said did I really want to do that. I said yes. I don’t think, I know she thought I was mad! But here I am 17 months later doing just that, and I can only see it getting worse. Lovely. That was sarcastic. It is a horrible job, but if I can’t look after my wife at this or any time, there is seriously something wrong with me. 15.7.10 - We went to see Sue’s parents in Cambridge over the weekend. We had a great weekend. Sue saw lots of her friends. On Saturday we went to one of her friend’s birthday parties in the evening, Sue really enjoyed it. We sat and people popped over for a chat. I didn’t stop eating all evening. When Sue was in Cambs she had one episode of massive cramp in shoulders and tummy area.  This is what happened.  The weekend and much of last week was VERY hot, and Sue sweated a lot, partly due to the heat, but also the cancer gives her the sweats.  On Sunday we went to garden centre to buy plants for our rockery.  As I had to push the trolley with plants I was unable to push Sue.  She self wheeled herself around the garden centre.  She has had little to no need to use the wheelchair in the past, up to a few weeks ago, and of course her arms and shoulders have also got a bit weaker in any event.  We got back to her parents house and Sue sat on the sofa and her upper body went into spasms, I diagnosed cramp quite quickly, her dad was panicked and wanted to call a doctor, but after several glasses of water, and energy drink, and a salt tablet, she improved significantly.  I had also recently bought a fan, so set that up to cool her down.  Her friends that we were due to visit over the weekend, came to her parents house, so at least she still saw them all without having to move an inch. A lady from St Peter’s Hospice popped out on Wednesday and this is a note of the notes that I took following questions and info exchanged. Sue said her appetite is small, but she manages to eat very small meals.  Over the weekend she brought up an egg and one piece of bread, but other than that everything stayed down.  She seldom takes any anti sickness pills, she doesn’t feel a need for them usually.  Though last night she did take them and just as well, as her ice cream nearly made a reappearance. None were taken today, and all is well and good. Yesterday she ate 2 crackers and marmalade for brekkie and lunch was a tomato, bit of cucumber and cheese and packet crisps (chips in USA!!).  Last night she ate a small piece fish and a few chips (French fries!!) and spinach or broccoli or similar. She is in little to no pain, unless I prod or poke her, which I don’t, too often.  The lump on groin is heavy and uncomfortable.  She does take co-codamol occasionally daily just to keep on top of things. Which I can’t do now. I forgot to mention that a few weeks ago in this story as well, as the pain inside down there is now too great I have taken up monkhood, I thought I would build a Trojan Horse and attack from the inside. Anyway, enough stupidity, back to reality and now. She sleeps ok, and has a commode by the bed, so only has to use stairs to go to bed and come down in morning.  I bring the commode down to her during the day. I asked the lady if it was normal to stop after 2 chemo’s. Yes if it is not working.  I didn’t get a proper answer as to if the chemo worked on the blood boil thing, to quote Sue now, the lady backed away from the question / answer. I did have a reason for asking the question and did not go into it with the lady from the hospice. It is to do with what Lee the American oncology nurse who I email and communicate with said. It is her opinion that as the blood boil thing had disintegrated and was now partly a cavity that the chemo may well have been working and should not have been stopped. Anyway back to the chat with the St Peter’s Hospice lady. We were asked at what point we suspected where the conversation with our oncologist in Bristol was heading about them stopping chemo. Sue did admit in the meeting with the hospice lady to feeling a bit of relief that the chemo had stopped as she feels at this stage healthier off it. We both agreed it was when he was actually talking to us that we got the vibe of where the conversation was going about stopping it. However we were both obviously very sad that the end was nigh, even Sue, given her thoughts that I mention above.  I was confident that with chemo we could get to and past Christmas, but without it I can’t see us getting even close, but let’s see. Sue has just said she feels that they stopped too soon, but it has to be taken into account that she also says she feels better for being off chemo.  She said she doesn’t feel a third chemo could have done any harm if they had just continued. But now she is off it, she would not want to restart, so we haven’t chased them. I think they would look very stupid starting again anyway. The words egg and face spring to mind. They won’t do many if any more blood tests, unless needed.  Depending how Sue feels. Which seems a bit strange as I am sure that cancer lowers the haemoglobin, that thing where it should be 12 to 14, but in Sue is usually lower, but I think that chemo lowers it even more.  They can supply oxygen if ever needed as well. The Hospice lady will just keep in touch, but has referred Sue for a day centre at the hospice, where there are drs and nurses there if needed, but it is really a social thing to meet people in the same boat, they do arts and crafts etc.  I can and will go for the first one, a tea time sort of thing for a look see.  But it does not involve families, Lee thinks it should involve families, not just patients, but it is of little interest to me anyway… Sorry, but I don’t at this time feel particularly inclined to be around sick and dying people. I know it is not a hospital, but it still has nurses. Actually, well maybe…. Sue is all I want to be around.  What is someone going to say if I attended the bereavement service, there there, never mind!!! Off that subject a moment, the funny thing is, that life does go full circle, before I knew Sue I was into gardening, spent hours in my garden, I met Sue and the garden looked after itself, I hardly lifted a fork, my chopper got a lot of use.  I got into other interests, digital photo, computers, walking, not in that order, then the pond and koi etc, and as an off shoot the rockery needs planting, and I am now into and excited about gardening again - but won't be able to  share it with Sue - bugger!! This also brings us neatly to walking and how we got to Dartmoor for a holiday. Sue has always had a dream about meeting a wolf, I am currently looking into making arrangements to see if I can make that happen. Dartmoor… Our Dartmoor holiday, it included blisters and a ghost and The Mist…. 24.7.10 – You may remember that I said that the blood boil thing had gone, well it had, but it is coming back. I wonder why. Anything to do with the chemo actually working and killing it, they saying the chemo wasn’t working, stopping it, when in probability it may have been working, and off the chemo the boil thing is making an emergence, with vengeance. I am changing the dressing twice a day now. There is nothing left in the tank now, just whatever time we have. Sue is back to climbing the stairs on her bottom. At least I got her in the garden to sit by the pond whilst I planted a few plants in the rockery. We see the Hospice on Thursday for a look see. We will try to make an appointment with the nurse practitioner at the local GP soon as well, so she can see it and describe it, for the record. I will get back to that Dartmoor holiday soon. I was tied up with two air shows in one week. Now got literally thousands of pix to edit. 26.7.10 - Sue got out to the pond today, she sat on the stones by pond had a small cup of tea and helped me put 2 koi in pond.  We took the usual 20 mins to do it so they acclimatised to the water temp etc. Afterwards Sue managed to get to the back door, but there are 2 steps up to back door, she nearly collapsed in my arms before even trying the first. I managed to lift her up into house, I put her arm around my shoulder and heaved. Once she was standing on the threshold of back door she was sick, thankfully I had a pot on the draining board, thank goodness I was inefficient and left the sick bowl on the draining board, rather than put it back in lounge! She managed to just about get to the lounge and sofa.  She went out in her wig, I took that off, she was saturated under it with sweat.   She seems ok now just a few minutes later. She asked for a packet of crisps/chips. I will see if they stay down, then need to try something more nutritious. They did stay down. As did a small piece of chicken that evening   The Dr gave me the number for the local Red Cross.   That got me thinking, so I called The St Peter’s Hospice lady, she will arrange for the council to look and see if a ramp can be fitted out the front and a stair lift fitted, I think you rent it. Keep you posted on how it goes, but remember, it is a council job, so it won't be this week 27.7.10 – Morning - We hope to get to see the NP today at the GP surgery, just so she can look and make a medical record.  Hope we can get there.   Sue slept well, she still uses the commode by the bed. She got dressed and wore herself out, just putting on pants bra t shirt and skirt. She got into bathroom, and was "sick" as in she did the motions, but there was nothing to come up.  She is having a Weetabix for breakfast now, fingers crossed it stays down. It did. The nurse practitioner saw it, she remembered that what she saw before was a jellified sort of thing, I sort of had to point out my point of view about it starting to build back up, she said where was I going, so I told her that in my opinion they stopped chemo too soon.  She didn't argue the point, only said they may have had their reasons for stopping it.  I think she could see where I was coming from. She could definitely tell that it had started to swell back up on the outside, that blood boil thing is back. But it is sort of growing around and inside the perimeter of the wound. It is most unpleasant. They also took blood. Afternoon - Sue was sitting out in conservatory watching the pond, sat there from 4pm, she was going to go thru to lounge at about 5, but her friend phoned, then the Dr, so she stayed in conservatory, nice and relaxed and she was just sick, no reason, she hadn't moved.  That was after the Dr called. Sues HG was 5.6.  The Dr who called about 6pm wanted Sue to go to hospital tonight, but that would be as an inpatient, as it is night time, and Sue can't see them doing it tonight or anything helpful tonight. I don’t think she could have faced hospital at that moment. There are no regrets.  The Dr called back, the day centre will call soon to arrange a blood transfusion. I wonder if the cancer on the lung is playing havoc with the lung and having a cause on being sick or something.  It is now 6.45pm. I wheeled Sue from conservatory to lounge, as she too weak and dizzy to walk.  She quite spinney, dizzy.   Sadly the dinner came back up. She had a cracker first as I suggested the cracker, I got them in just for this situation, but she wanted to try the fish, rice and a little veg. It was a very small portion.   I think she will try a cracker later, she did and that stayed down.  I have made a Calshake for her.  I will see if she can drink half of it and some water. She did not fancy the Calshake. She will sleep downstairs tonight. No chance she could get up the stairs in her current state. She just needs a good night sleep. Let’s see what tomorrow brings. Dartmoor – May 2002 – The traffic was quite bad on the drive to Dartmoor, I remember the M5 being chock-a-block. The cottage was very pleasant. Two storey, downstairs was a lounge cum kitchen with a small staircase to a bedroom or two. Can’t remember if there was two bedrooms or not now! If there was it was used for storage! We took our dogs, that was Bess, we still have her, and my beloved Sasha, lost her in 2004, a month after our wedding, in October. Our wedding was 26th September 2004. Anyway, getting ahead of myself. Our first walk was to Bleak House. Seriously! I had little to no idea how to use a map, not ideal, and used a GPS most of the time, thank goodness the batteries never failed. Well, they did, they ran out regularly, it ate batteries, but I had plenty. I remember this walk as it was Sasha’s first on Dartmoor, deep in the wilds, she had probably seen it before, but not the deep interior. This week would be the last time that Sasha saw Dartmoor, after this week in 2002 we left her with mum and took mum’s dog. Sasha was getting too old for it. On the Sunday we parked the car below Brat Tor, we didn’t walk up Brat Tor, we walked between it and Great Links Tor towards Bleak House. We took a bit of a funny route, ending up a bit too close to Dick’s Well. Seriously, it is on the map. We stopped at Bleak House and ate rolls and made tea. The plan from Bleak House was Kitty Tor, but the going was rather rough, we had never seen a tussock before, so we chickened out, it was our first walk on Dartmoor after all and headed for a nice easy track, and that took us back to the car. That was supposed to have been as short as it was, it was a welcome to Dartmoor walk, it was the shortest we ever did. But still about 10kms or 6 miles ish. We planned 3 more walks in the 5 days. So we were up and ready on the Monday for walk two. We parked at Harford Moor gate and didn’t bother with the easy Two Moors Way path, opting instead to follow the River Erme. That entailed heading cross country to Sharp Tor, past Piles Corner and down to the river. We passed a couple of tributories, so even I could tell where we were on the map. At one point I wanted to cross the river, but as it was stony and at least knee deep we chickened out when we dipped our toes in. No way was I crossing that river and Sue would never have made it. So we follwed the river on the same side and headed Erme Plains and Two Moors Way, it was this path that lead us back to the car 15kms start to end. So far the weather had been very kind to us, and the use of GPS had been little to none. We had no blisters, in fact I don’t actually remember any at all. In those days I used walking boots. Sue was very brave on these walks, as we had little to no idea what we were doing, although we were fully equipped. We were just about fit enough for them, but the going was tough off track. Sue did enjoy her Dartmoor walks, I think many of the views she had were of my back, as my long strides carried me ahead. I often tried to slow my pace down. It as no problem just stopping now and again. I stopped regularly for looking at the map anyway. On the Tuesday we went to the Otter sanctuary. Our next walk was Wednesday, and it was a horrid damp and very misty day. I used the GPS all day. It did a sterling job of getting us to way points and back to the car. At one point Sue asked me to slow down and when I looked back she was not that far back, but I could hardly see her. Then Sasha nearly went missing in the mist, her hearing was starting to go, so that was a bit close for comfort. I remember a trudge over tussocks, a farmer in the distance herding his sheep. Our last walk on the Friday we decided to play it safe and easy as the mist was in again and Sue didn’t fancy the tussocks again, so we found a nice track / path to walk along. It was walking along this path that we saw a ghost. A man jogged past us, dressed in white, soaked to the sink with sweat and also the wet mist, and just kept jogging, he made no sound as he approached from behind, nor as he passed. We commented on it at the time how strange not to even say hi or nod the head, we may as well not have been there. I can’t remember the exact locations of these two last walks. We would get back to the car exhausted but exhilarated. On the Saturday, as we had got caught in traffic on the way in we thought it wise to travel later in the day, so we thought why not walk the dogs on a shorter but still decent sized walk. We parked at Burrator Reservoir and followed the path out for a killometer or two, Sasha went up to and said hello to a cow, I think Sasha thought she owned the land. She didn’t chase it, nor bark at it, just walked up to it to say I am boss, watch your step. We found a little stream and ate by that and made our way back to the car on the same path. Nice and easy. It was on the way home that I thought Dartmoor is not that far away really, it took about two or so hours, plus a stop. So I suggested we go back in the near future and do a walk. So we did, a few months later. It is still one of my favourite places for walking and much missed, particularly by me. I think Sue had a love hate relationship, I think she enjoyed the walks, but usually after she had done them. We did have great times there mind you. The weather was usually kind to us, I got more experience with a map and was pretty good at navigating. I tried to use paths as much as possible, and we usually did the same walks again, so we got to know them quite well. I was always astonished when we would look over the Moor and pinpoint a tor where we had started way off in the distance on the horizon. We regularly walked 15 miles, once clocking up 20 miles and a couple of times a good 18 miles. I could tell that those long walks were too taxing for Sue, so throttled them back to the 15 mile mark, these Sue was capable of doing easily. When we did the 20 miler I did not tell Sue how far we were going and doing until the end. I think she was really pleased with herself for doing so much. As we enjoyed walking on Dartmoor so much, Sue suggested having our honeymoon in the Lake District and doing a few walks there, so we did, in October 2004. But before that we went to Thailand and Cambodia and Jersey. Not at the same time. 28.7.10 - Sue had a good night last night. Her Weetabix stayed down this morning.  I will try the Calshake later. The Dr phoned, they want her in hospital as outpatient tomorrow 9am for cross matching blood then they will do two units of blood tomorrow, come home and back in and two units of blood on Friday.  The hospital is very local. Sue last her dinner, annoyingly.  I wonder if it was the Calshake.  Dinner was a cracker and cheese.  Or could it have been the cheese.  But the crackers and a chocolate biscuit stayed down when Sue had them very recently.    I think we need the mind set of little and often, we still in the mindset of breakfast lunch, dinner, but that not working, just such a bad routine to be in for Sue right now.  I have suggested just a cracker, see if that stays down, then re-evaluate in a couple of hours. Food is a real issue now. At least only sick once today, so that already better than yesterday. I guess that the cancer is pumping crap thru the body almost poisoning it - making it reject stuff. Sue had a visitor today.  They sat in the conservatory, which was fine.  Nice fresh air near pond. My mum visited as well and she liked the pond, so I get to keep a life. My friend visited as well in the evening, so we all watched and laughed at Top Gear.  So a good day was had by all. 29.7.10 – Whilst yesterday was a good day, today was far from it. I took Sue in to hospital for blood trans, she was so weak this morning. She had messed herself. I brought her a cup of tea at 7.30 and she was lying naked from the waste down and she was in a bit of a mess. She did not remember going to the commode. I quickly and efficiently cleaned her up. I then did the dressing, it was a mess. She is on the sofa as she can’t get upstairs. I just about got her to car. I half carried her down our front steps. She heaved when she got in the car and I dashed back for the sick bowl, thankfully it wasn’t needed. When she got there they did the usual checks, temp, blood pressure and oxygen. Her oxygen was 96% and blood pressure 70 over 50. They give a score based on those results. Sue’s score was 4, a one would be good. Four means that they have to find a doctor to see the patient within 15 minutes. Considering the cause of the score the doctor lowered her base score to 6. Her blood count the other day was 5.6. That is very low, so no surprise she was so lethargic and anaemic this morning. I popped home for a quick tidy up while they crossed matched the blood, that takes a couple of hours, I got back before they started or did anything. I was emotional this morning, for the first time I cried whilst doing the dressing.  Sue was a bit close to the end at 8.30 this morning. They started the blood when I got back to the hospital, about 11.30. Sue’s temperature went up to 38, so they decided to stop it, it seemed she had reacted again. I said her temp does go up like that and to try a Paracetamol. They went off and asked the advice of the consultant haematologist, who said to give her a Paracetamol and carry on, keep an eye on all her vital signs, if the others were ok, then proceed. They moved her into her own little room with a bed, she was so very tired. Almost on her last leg. If I had stood her up with her crutches and let go, she would have fallen. So they got one lot of blood it. They were only able to do one lot today as Sue has antibodies and they could not find any more matches, so they will do 3 units tomorrow. Hopefully that will give her a big boost. I met the OT, occupational therapist, about ramps to get Sue in the house at 2pm, I left Sue having her blood. The lady was very pleasant and helpful. We now have a ramp for the side of the house and the back door, as the front door has a rail that angles the wrong way for a ramp. The ramp worked fine, but I might ask to change it for a single ramp, rather than two into backdoor, lining them up was a bit of a faff. I can now wheel Sue into and out of the house. Also going the back way means she gets a view of the pond and back garden, it also means I can wheel her out into back garden. The OT also discussed sleeping arrangements and chair lifts, but that is food for thought for now.   Sue's wound leaked massively in the car on the way home, and I mean massively, I got her in the house with a bit of jiggery pokery on ramps.  Wheeled Sue to lounge sat her on sofa and undressed the wound and more liquid spurted out out.  Well poured out, thankfully I had put plastic and kitchen roll under Sue so it didn't get on sofa. Probably a good thing really, a weight off the hip/pelvic/groin area. Dressed it again, so hope it holds for awhile. It didn’t, I had to patch it up.  Don't normally get a leakage like that, it just poured out. I will change it again before bedtime. I used about a dozen swabs on it. I soaked car seat in disinfectant. Sue has eaten a cracker, and I made a tea for her. She ate a little fish, chips and spinach. Let’s get tomorrows blood in her and hope she gets a little stronger tomorrow. Sue spoke to her parents this evening, but I think she cotton wooled the truth a bit. They are planning a visit towards the end of August, but I wonder if they ought to make it a bit earlier, let’s see how tomorrow goes. Sue was asleep for a few minutes a few minutes ago, until Bess barked and woke her up, she needed the commode, I stood by her, for the first time today she did not "need" my support, just my presence, so that good. She held onto the side of the commode for support. I wonder how she will get on tonight. We will have to get the walkie talkies out or get baby alarms.  I got the ice cream out ready. 30.7.10 – Sue is slowly dying before my eyes, and there is nothing I can do to prevent it. I will need to get her parents here sooner rather than later, maybe next weekend. Maybe Sue will see out August, maybe not. The OT took the ramp away.  It failed health and safety, the gradient was too steep for them to sign it off.  They need a 12.1 or min 6.1 gradient, a 6ft ramp would have been 4.1, and the 5ft ramp she had left was 3.1, so her superior told her that we could not have it.  I had to buy one, thankfully I am not a believer, but the gods were with me, a second hand one up the road for £75.  It is same length ie 5ft, so steep, but it works, I just have to use my common sense, something that we lack in this excuse for a country with health and safety.  As if I would sue for my own stupidity of letting go and seeing Sue end up in the pond, actually she would end up in the filter house, so she would clean the filter at the same time as scraping herself off the floor – humour again. It was funny when I thought it, not so on this edit. Anyway, it is good we have a ramp, and it is ours. Like I would let the chair go....stupid people! I asked how long the nurses thought the blood might last they said one bag gives one point on the haemoglobin thing, so 4 bags is 4 points so she was 5.6 so that means she should be 9.6 now.... I guess she lost 4 in 3 weeks so in 3 weeks time she might be back to 5.6. I think her last 2 units was 3 weeks ago, which would have taken her back to about 9.6ish.   I was going to walk Bess this evening, but never got around to it. I gave Sue a very small portion of mashed potato and mice meat for dinner this evening. I have given her 2 anti sickness tabs. So they have time to act. Her cup of tea stayed down. When we got back from the blood transfusion Sue sat in the conservatory looking at the pond. Her dinner came back up after she had ice cream. I think we will have to forgo the ice cream. And tea. I will try to keep tomorrow bland food. She will just starve to death at this rate. Have you ever seen those poor baby orangutans, the ones where they hold their arms out. Well I see that now in my own lounge as I pull Sue up or help her manoeuvre to the commode.   Her voice sounds different, she says she feels ok, but mentally not ok, I think she just a bit dizzy sleepy, it is concerning her, she is worried about it, scared, she can hear drums in her ears, heart beat I guess. She is getting annoyed, as she cant get her pants / underwear on the right way around, she had trouble this morning and still the same this evening, she either puts the wrong leg in or puts them on backwards. I asked how her eyes were, fuzzy, I was "moving" she said and I wasn't.  I guess there is nothing that can be done, but it is scaring her now. It is quite depressing, I must admit, this is getting emotional again.   I will see how the weekend goes, nothing happens over the weekend anyway.  I will get a letter to the Dr suggesting weekly blood tests, we can get there now we have our own ramp. We surely can’t allow the blood to go that low again. I changed the dressing twice this evening, it soaks through my swabs super quick, but swabs still the best thing, nothing else soaks it up as well.  I just use whatever I need to make her comfortable. I don’t bother with the fancy stuff, it all modern and worthless on this wound. How much time do we have left. No one has given any indication and we don't really want to know, well Sue doesn't.  I don't really.  I have no idea, but yesterday felt like the end.  She not quite the same, but better than yesterday. Her folks are visiting late August.  They have a friend bringing them here, he will go straight back, they live 180 miles away. I will drive them back, and come home same day - need to get someone to watch over Sue when I take them back. I will get them here sooner as well, as long as they are able to make it. Sue’s dad is healthy, but her mum has had a couple of strokes and suffers seizures, so the travel is stressful for her dad as he never knows when or if something might or will happen to Sue’s mum. Sus’s mum had a seizure once before when they visited Sue in hospital in 2007. Poor Geoff spent his whole weekend in hospitals, either his daughters or his wife’s. They were in different hospitals.  31.7.10 - Mum wondered if Sue had had a mini stroke, with slurred voice and confusion. Whatever I will call the dr on Monday and ask if they can prescribe an anti clotting injection to help prevent anything like that.  As she not moving much at all now, on sofa most time, she can just about get on commode by herself, so she has dexterity for that, just weakness. This morning I woke up at 5am, and so I popped downstairs and snuggled up with Sue on the sofa. She said she heard a drumming in her head – her heart beat I think really. She said she had a scary night, she heard music in her ears. When I was lying next to her on the sofa at about 6am she said the music stopped, silence, she said it was peaceful, she added she was at peace. God Almighty, I thought that was it there and then. I couldn’t stop the tears then or for much of the morning. Just looking at her and seeing her look back at me, with that drop dead gorgeous smile and my tears flooded out. She didn’t cry. I got Sue in conservatory in wheelchair looking out on pond around lunchtime.  It is a sad day, just is, no rhyme or reason, just sad today.  Looking out on something that we won't share for long is sad, so looking at garden not really helping, but it is pleasant and fresh air for Sue. I did pop out and rake the grass and weed the rockery. That helped. I asked Lee her opinion of the above in an email. Tony, If the weakness is just on one side and her speech doesn't clear...then it could be a stroke. If the weakness goes away...a TIA...a kind of temporary constriction. Or it could just be her body slowing down. Either way...watch her moving...she's a prime candidate for a fall with her limited mobility. Let her enjoy the garden and pond you have made, I'm thinking it gives her peace...that's a good thing. Keep doing what you're doing...wrap her in your love. Lee is an absolute marvel, so helpful and inspirational. Much more helpful and encouraging and most importantly approachable than many of our lot. Sue had improved this afternoon a little bit, if she is at least as good tomorrow as she is this afternoon, then I will use our ramp and then wheel her carefully around so she can see the fish even better and feed them.   She is now back on sofa, I think that little look has worn her out.  There is no outward sign of stroke, ie both sides just as weak as the other, neither less or more so. I am ashamed to say she did fall yesterday, I was getting stuff ready for the transfusion in the hall and she was trying to put her skirt on in the lounge, she fell and banged her head on the commode, but she was ok, nothing was damaged or bruised. Even the commode was fine.   I didn't feel like lunch, so I grabbed a Slim Fast drink, it is about 5 years out of date, but was all I fancied for lunch a liquid meal.  My tummy felt empty, but my mouth and mind and throat doesn't, just a bad day today.   We phoned her parents, spoke to her dad, unfortunately she mentioned mums hunch about a stroke to him.  I put him right and said it was only a hunch, when he called later I said it wasn't or chances are very very low.  He wanted us to call a doctor, but I can see no actual real reason to do so.  Sue doesn't want to be carted off to hospital or the hospice. If Sue wanted me to, I told her to tell me. I think her dad has the impression she should be in the hospice, gasping her last there when that time comes, but I made it quite clear she stays wherever she wants, and thankfully that is home.  He asked if we had any support, I said I didn't want or need any, I have access to medical supplies and what more could anyone else do, and they would not give the time or love to Sue that I can and do.  OK, they may not make her all soggy with tears.  Sues parents are visiting on Monday for three or so days. I think when we spoke to them this morning we panicked them a bit and they got the impression that she was expiring quickly.  So Geoff said he would stay until the end.  I had to say we don't know when the end is, she may very well see out the week or the month of Aug, we don't know.   I appreciate it is very tough on them being so far away and we did spook them this morning.  But she is "better" this afternoon, she can just about pull herself up on the sofa and still uses the commode alone.  She had a really good sleep this afternoon. Her mind also seems more with it and she doesn’t seem scared now. I think we have a little reprieve.   When she was talking to her parents on the phone this evening she went through the choking motions, but nothing came up, I think talking made it happen.  I am spacing very small food / energy drinks every 2 hours ish when she wants it, trying to get out of 3 times a day.  Her Calshake I split into three over six hours stayed down and apart from the choke on phone she not been sick today! Let’s see what tomorrow brings. 1.8.10 - I got Sue outside mid morning and parked wheelchair by pond, she was able to feed the fish, not that they popped up much, they probably nervous, but she got to see them.  I moved her back a bit and they came up a bit more. Though they didn’t seem hungry at that time. She was getting tired, so I wheeled her into conservatory, and she had her cracker and butter. So today she has had a Weetabix, 1/3 of a Calshake (I break that down into thirds!) and a cracker.  So far it has all stayed down, so that good.  Better to have tiny amount and keep it that than lose a 4 course meal. She was tired even more after cracker, so she now sleeping on sofa.  I have Formula One on, will watch a bit of that.  Mum taped the cricket from yesterday, I will have a nose at that later in the background.  Sue enjoys a bit of cricket as well, she don't mind me watching it.  She the perfect wife, that what so annoying. Sue just taken her 3rd dose of four doses of Domperidone, anti sickness tablets, so I will wait a short while and give her her second third of her Calshake drink.  So far so good today.  For lunch I did a scrambled egg - one egg with a drop of milk, I gave her 3/4 of it and it all went down and stayed down.  She did not want the rest as I suspected she wouldn't, so Bess had it.  She is sitting in mid conservatory midafternoon looking out on pond ready for her drink.  She rested well this afternoon and got her pants on first time, not that I was cruel and screwed them up and inside out to see, but she got them on just fine.  She was a bit wobbly putting her skirt on, for sitting in conservatory. In lounge she sits in just her undies. I changed the dressing mid afternoon also as it gets so wet and horrid.  I put a dressing on with swabs to last a few hours, change before bedtime for the night. I nearly lost it with tears looking at her smile again just now, but that was from happiness at how "well" she looks compared to the past few days. She had a tiny piece of basa and a few chips / French fries for dinner time, like probably 5 chips, a quarter of a finger sized piece of basa and a spoonful of spinach.  She seems to think my portions are perfect. But even my small portion was just too much, but it stayed down. We had a little disagreement, it didn’t last more than a moment and I think it was born out of her confusion and worry. For some reason her bowels are a bit lose this afternoon and she was messing herself a few times. I suggested a Loperamide to try to prevent it. One went down but the second came back up. You need two to be effective. She said she was taking too many tablets, referring to her tablets of the day not the Loperamide. I said the only tablets she had taken were her anti sickness tablets, nothing more. She has not even taken any pain killers today, amazingly. Anyway, she was loose again and I think she was happy to follow my advice and take that second Loperamide, it replaced the one that came up. It stayed down, as did her dinner. She is sleeping again now after dinner, she can’t wait to watch Top Gear, she looking forward to that. I will change the dressing for the night, and give her her third portion of Calshake. So hopefully once again we have gone a day without bringing up food, other than the capsule she brought up. She is just so tired. I will call the GP tomorrow for advice on an anti clotting injection or something as she so inactive. I will also ask about regular blood tests, I don’t think the hospital were too enamoured that her blood count was allowed to get as low as 5.6. She is still recovering from that, and as her friend points out, the lack of food, but at least we getting that to stay down now. Long may that last. 2.8.10 - The dr called on the phone and said to take Aspirin 75mg to help prevent clots in the blood, rather than Clexane which is a bit painful and not designed for arterial clots, he said.  He said that aspirin is better for arterial clot prevention.  Something like that. He said I didn't know him he said we had not met, how little he remembers, I met him once with mum when she took her hand to him years ago.   I met him a second time in October 2006 when we first saw a dr and he was the first dr to see Sue’s lump on the leg, he was the first dr to diagnose Sue as haematoma.  I reminded him about seeing him in 2006, but left out the lump bit.   This wound is a right pain in the backside, it leaks quite a bit now, even my swabs are struggling to hold it.  As it is so close to her lower area I don't have much leeway on dressing it, ie I don’t have much room for the sticky part of the dressing.  The liquid soaks the swabs, then dribbles down and the dressings lose the stickiness as liquid wets them out then the liquid just seeps out.  When it leaks I just open it up a bit, pull a few saturated swabs out and put more swabs in and replace the bottom dressing to try to hold it at bay.  I asked dad to get thicker swabs like more closely packed sort of thing.  I have used them this evening, and also one of Sue’s old STs at the bottom of the wound, see how absorbent that is along with a stack of swabs, three dressings and various bits of tape to hold the lot down. Sue cleaned her teeth this afternoon, ok, then she used a mouth wash - and up came her scrambled egg lunch and presumably her Calshake from 2pm.  At least it was only a bit of egg she had had, like ¾ of ¾ and 1/3 of a Calshake. But we were disappointed. Everything else stayed down. She had a sausage this evening, like ¼ of a sausage. I kept a bit more back, but she stuck with what she had. Bess profited from that.   She tried to feed the fish this afternoon when I wheeled her outside by pond, but they would not come to the surface, I was a bit sad when I went out later and up they popped. I think they must recognise foot falls, and maybe a wheelchair spooks them. I will get some sinking food so Sue can see them bottom feeding, if nothing else.  Lee said not to let them get too used to bottom feeding though.  A tiny bit so Sue can see when she sitting in garden for an hour won't hurt. I might also try sitting her in a different place, see if that helps. Our ramp going well, bit steep, but I cling on for dear life. Sue definitely more perky today, still quite quiet, but a couple of people phoned and she felt able to talk for a minute today, whereas the last few days she couldn’t really chat. She sat in conservatory for an hour this morning and garden for an hour and a half this afternoon. Both an improvement on yesterday. She will have another blood test on Monday next week, a week after her transfusion. They did offer to get a district nurse out, but with our ramp and my independence I said we would get there. Let’s hope we can. At least that way we get to see the same lovely lady. Sue’s parents down tomorrow so that will be great for them all. 3.8.10 – I broke all health and safety rules this morning, but as we don’t have health and safety what the heck. I carried Sue upstairs and gave her a shower. She didn’t half enjoy that. You may want to miss this bit. Once I had her in the shower I sat her on the shower board, put on gloves, no, I really did, and removed the dressing. A bit of the tumour went splat on the floor of the bath. It was gross. I grabbed some toilet paper, well, even with gloves no way was I touching that, picked it up and bagged it. I carried her downstairs afterwards. I pit a temporary dressing over the wound as I could never dress it in the bathroom, just wrong angles and position. The dressing from last night leaked, but not as bad as before. I just used swabs this morning, but will try the same experiment tonight. I have asked dad to look into waterproof knickers, mainly so I can get Sue back upstairs again. I said to Sue if she wanted me to carry her I would, she said well the temptation of a proper bed and snuggling up to me was too great to miss. So if my updates stop for a week you will know I have done my back in, or fallen down the stairs and we can have a two for one. We have a weekly dressing bag collection from the council, I put all dressings in a yellow bag and that goes off for incineration. I have spent some of the day tidying up, and the rest crying on Sue’s shoulder, she soggy again. She said she wanted to go out and feed the fish later, at that thought I wept. It is her smile. Her beauty as well. The sinking food has arrived so we can try them on that. So far her small portions are staying down today, Weetabix, 1/3 Calshake, mince and mash – like a few tablespoon full of each – and another 1/3 Calshake. Another day I will tempt her to a bacon sarny, as you can imagine that will be a small one, I will gobble the rest, and I may try a pizza.  The thing leaked on my leg, ug or yuk, when I carried her upstairs, that reason for waterproof knickers. I did another dressing on wound this evening and used a different brand of ST, so far, ok only two hours in, but so far so good – let’s see if it is any better or worse in the morning. And that will be upstairs in our bed. Sue’s parents arrived safe and sound. They were delighted to see Sue and Geoff was blown away by the pond. All food stayed down today. 4.8.10 - It was raining out side but it cleared and I got Sue outside with her parents, she sat by the pond and fed the fish.  She had a little spaghetti but only ate half what I put out and that wasn't much, she nearly brought it up, but didn't.  Two hours later she had her 1/3 of Calshake, that nearly came up, but didn't and she finished it.  Her dad mentioned about staying in a hospice, he was quite pushy.  Not sure what was said to Sue about it, but I think from the quick quiet chat we had that she told him she very happy and wants to stay home. I think it was a genuine concern for me as much as Sue, but it would finish me off. And whilst Sue wants to be home, I want to look after her. He popped into kitchen and spoke to me saying it will get too hard for me to cope and how will I cope when she too weak to do anything.  I said over my dead body is she going to a hospice.  I had to be quite forceful.  See if it gets mentioned again.  I reiterate, the ultimate decision is Sue’s and she has told me she doesn’t want to die in a medical place.  She said she might try a piece of chicken later, let's see.  Hope so. She ate it and it stayed down. Sue wants to see a dr tomorrow morning, she is now concerned about her mind.  I must admit she doesn't seem quite herself.  I hope it is only tiredness and of course the cancer. But could it be something else and if so, what. She doesn't seem able to hold a conversation or she says something and then loses track of where she going.  She seems to get confused easily. Let you know what they say, not sure if they could do anything or if there "time" to do anything.  I don't think she is slurring her words as much, but her voice sounds different. 5.8.10 – I had a good nights sleep from 2am. Sue woke me up at midnight for the commode as she doesn’t have the strength to support herself. I just nodded off when I heard my name and Sue needed the commode again at 2am. It was after that that I fell in a deep sleep and didn’t wake up until after 6am. Sue was awake and I asked how she was, she said she had wet the bed, I asked was it a dribble that she just couldn’t hold. No she said she didn’t want to wake me up and disturb me, so she just went in the bed, thinking of others to the last, I keep telling her to think about herself first. Anyway, it was not a massive job to clean up, but she was wet on the back. I got her up and on commode and then covered the bed and whilst I was doing that she went again on the commode, but I hadn’t taken her pants off. Ops. I don’t think she was any the wiser. I nmow have pads and things to help minimize this happening and I told her to wake me, but she knows once I am awake it takes ages for me to nod off again. But that is no excuse to willingly not wake me. I got her on the bed, took the dressing off and put a new one on, even the pad I was trying doesn’t seem to be working as it did. I think a leaking wound is something we have to put up with now and again. It is more difficult with her parents here to be as meticulous with the dressing, well, when they are in the room I can hardly just look up the leg of her skirt. Not that I make a habit of looking up ladies skirts. Sue was in no position to visit the dr, so I asked one to visit, thankfully it was my doctor, they are all good, but he is the best. The dr came out early afternoon and started by checking how we were, he asked where Sue would prefer to be, home she said, I told him about carrying her up and downstairs for bed, no issue there.  He drew up a care plan, basically a sheet with our wishes on and to pass to a medical person if ever we called one out. It says hospitalisation / hospiceisation as absolute last result if there is something that cannot be done at home. I cannot see what that could be. He looked into her eye and could see she was a bit anaemic, and he sent a nurse out within an hour or so, she has taken blood. A transfusion will depend on the lowness of the blood count. He could not put a time frame on life, but he will not do any more tests, other than blood, they won’t x ray lung again, but will supply oxygen if needed.  I mentioned about her mind he had no real answer, but said they won't go looking as they could do nothing anyway.  I asked could there be a tumour on the brain he said possible, I have not mentioned that to her parents, why mention something that is only a possibility.  He said she might go slowly in her sleep one day soon or something could go bang and she would just go like a snap of the fingers. She sat by pond and fed the fish, I want to try to get her out to buy the black and white one on Wednesday.  It is by appointment, so working on that.  I have sent an email about the wolf as well, maybe if I can arrange it do both on the same day, probably knacker her out, but I cant see getting that way twice. I am keeping I very close touch with Lee in America, from my descriptions she said “It's good that the doc made a house call. Maybe you shouldn't take her out for that new fish. From your descriptions, she's failing.” Wednesday is really a week away and we can’t plan a day ahead, so let’s see. At the least I will ask mum to sit with Sue for the handful of hours it would take me to do the trip. That is my mission if I chose to accept it. OK, that was another film quote. Geoff is much more understanding about our wish for Sue to remain home, he gave me a big bear hug and I think we both choked on emotions. He admitted to a few tears when the Dr was with us and he, Geoff and Margaret were out by pond. I still wonder how much has stuck into Margaret’s head. She has had 2 strokes and countless seizures, so her mind not what it used to be. I have certainly had a few tears today, can’t stop the buggers. I wanted to give Geoff a hug as I dropped him off at the hospital, but feared I would soak his jacket. Sue and I watched a film, she slept through some of it, but got the jist. Last night I pinched some of her chicken and potatoes and veg, so as a fair swab I had steak potatoes and veg, and shared some of it with Sue. It was a small portion, she ate half. So I probably had 85% of the meal in the same time she ate half of her 15%. Please skip this bit and join the next paragraph, I wonder how many actually do this. Anyway, I did the dressing and wondered how far down the cavity of the wound went, the tweezers I use went into her body at least two inches, and with a bit of jiggery pokkery I expect I could have gained another few tenths. But didn’t, I am not that weird. It is scary though how deep it is, what the hell is just below. Doesn’t bare thinking. The wound around the outside is building up a bit more. I got Sue back upstairs with super absorbent knickers on, a plastic sheet and a towel. She has to follow the doctors instructions and if she needs the loo to dig me in the ribs. 6.8.10 – For the first time Sue has said she can’t go on, it is getting a struggle. She then said that I need to let her go. I guess we are now in the hands of the fate now. She very weak, I have actually asked for something from the OT, a bed pan, as getting Sue on the commode nearly left us in a heap. Slight exaggeration, but a bed pan will be much easier. Downstairs I will call it a sofa pan. Sue’s mum is sitting with her, singing little nursery rhymes. I must admit that made me cry as well. The doctor phoned up, her blood count is 9.7, which all things considered is not bad, I guess her pulse at 70. I think the cancer and lack of nutrients over the past few weeks has weakened her. She asked me why is she so weak. I can only answer the above, and of course the cancer is working away. The doctor said to only give food or drink if she wants it, not to force it. She did just ask for a watered down Calshake, so that is the 1/3 watered down by half. But at least she wanted it. I then cried on the phone with doctor and had to get myself under control when trying to tell him what she had said this morning. The doctor still couldn’t give a time. But it would be an unjust thing to give I guess. Sue is looking a bit more chippy now. I even saw that killer smile. She worked the remote control to put TV on so her mum can watch her murder programs. I think she very confused, she said how can she work the remote yet be so weak, she said her brain can’t have gone totally. Sue perked up a bit this afternoon and of course you start to think of a sudden recovery, I asked if she wanted to go into conservatory and she did. She sta there for a good little while, then she needed the commode but she wanted to go back to conservatory and her dad suggested going outside, so we wheeled her down the ramp and she sat by the pond and saw the fish feeding. We bought a bird table online last week so Geoff suggested putting it on the lawn, there is nowhere for it at the moment other than that, and I put a bit of bird food in it, so if Sue wants she can see them eating, if we get her in conservatory tomorrow. The blood service provisionally booked Sue in for Tuesday for a blood transfusion, but that was before they knew the results, but we had no details so I called the doctor, he called back and said that they would take it day by day. But his opinion based on what Sue said this morning was that a transfusion and more blood tests would cause more stress than benefit and would prolong the inevitable, my words, he confirmed them. She started to get very tired, so I got her back on sofa, she wants to try a bit of chicken and mashed potato later, see how that goes. I think it will be a tiny portion. I must admit to spending most of today weeping, cried on phone with doctor, Sue’s friend called and set me off, I spoke to my mum and off I went. The only time I was happy was in the garden, as she seemed better, but we know she isn’t. Sue is chirpier this evening, in that she is not talking much, she has been quiet for over a week, but she is smiling a bit more and just looks a bit more with it. We have had lots of calls today from friends, many probably think I am mad, I have so far refused a downstairs bed and put a stair lift on hold. At least Sue has made use of the pee pot we got hold of. Sue is more than happy with me dragging her sorry ass up the stairs and chucking her on the bed. Sorry, another sort of film quote, one that I often remind her of and she always smiles, so don’t be offended, and if you are, ops. Independence Day, Will Smith shoots down the alien space ship, knocks out the alien and then says something like now I have to drag your sorry ass across the desert. Of course I don’t mean it in context. Anyway, back to the refusing stuff, I just see it as easier this way, for the moment. I am told that there is help out there, but my dedication to caring for Sue won’t allow intruders. And Sue doesn’t appear to want any other help than mine. This suits me just fine. No one could do it as well as me. Nobody does it better. I feel a bit better this evening, can you tell. I just looked at the clock 22.23, mmm, that is better than the usual 22.22 I see. All numbers the same is my superstition. 7.8.10 – Sue asked me to type out a personal message to the many family, friends and people that have crossed her path. In case we missed anyone, and you will know who you are, this is for you as well, please don’t be offended that it wasn’t sent direct. Here it is. “It has been a privilege knowing you through out my life. Take care of your families and enjoy life. Love Sue” Sue had a slightly better day today, very emotional for me, especially just after waking up and getting her ready to come downstairs. It is just a killer emotionally. She said where have all her tears gone. They must be there, but she is maybe too exhausted to shed them. She says that she loves me very much and that I must never ever forget that. She is a bit brighter than yesterday, but so terribly weak and tired. Her parents have their last day tomorrow here before going back home to Cambridge. Sue had half a Weetabix this morning, and has two small drinks of Calshake that I have to water down. I will try to tempt her to a little bit of fish and a few chips. Her appetite is virtually nothing. Mind you mine is not much to right home about. We were able to get her in the conservatory this morning and garden for a short time this afternoon, but even that tires her out dreadfully. It was whilst in the garden that she said she wanted to email people with her message. She wanted to do it sooner rather than later, just in case. The emotional pain is almost unbearable on me, I am not at the point where the chances of crying just talking to friends and family on the phone is now greater than 75%. I got sue upstairs to bed fine this evening no messing about trying to hug her and all that nonsense this evening. Nonsense, but at that time it is. This is why. This morning I carried Sue to the bathroom to try and give her a shower, but she was just too weak and dizzy to even just sit on the bath board in shower. So I carried her back, changed the dressing and helped her get dressed lying on the bed. She just has no strength left. She can lift her bottom to put pants and skirts on, but that is about it. Anyway, I pulled her to her foot and hugged her this morning, bad move, she was so weak her leg just gave out and I had to hold on for dear life to stop her falling to the floor like a sack of potatoes. I fairly easily laid her back on the bed and said did she still feel like trying to get downstairs and the sofa, yes. So more to my self I said right cut out the flaming, that word was edited, romantic bit and pick her up. So I did, just grabbed her off the bed and carried her down. As I don’t know how strong her arms are, I interlock my hands. She does still manage to hold her arms around my neck. I can tell you frankly; this is eating me up emotionally. Killing me. Don’t know how the hell I will cope without her. Even Geoff has said, as has Sue and my mum, that I will find someone else, but even the though fills me with dread, I won’t be able to say, Sue, what you think to this one. She is simply the centre of my life. I seldom cry when I write this, but often do during the day. Sue did seem stronger willed today. So yesterday was a bad day, today a good un, lets see what tomorrow brings. Let’s see if we can get Sue to Wednesday for my birthday, and beyond. Sue can’t hear me well in the other room, she has to really concentrate to speak, listen or look, it all wears her out, but I have told her about the replies to the emails and any messages below I always pass on and I said when I wheel her past here tomorrow to conservatory I will read them to her. She is so thin now, losing so much conditioning. Even Peter Cushing looked fat by comparison. She just doesn’t feel like eating much. The 2 hour regime has gone by the by, I just ask if she feels like something now and again, that is what the doctor said to do, not to force food down her as it will make her choke and uncomfortable. She is choking a bit more these days, for no apparent reason, might be worth mentioning that to the St Peters Hospice lady on Monday when we see her, see if any oxygen would help. I made one silly mistake and it brought out the tears, she has the Calshake, when it is made up it is 240mm, though I use 300mm, milk then add the powder and shake. I was pouring out a small tumbler full, maybe 100mm as it lasted the three doses, as it were, but now she wants it watered down I make it to the same proportion and water that down, thinking that I am starving her of nutrients by watering down such a small drink anyway I cried and said stupid idiot, tomorrow I will use 150mm milk to the powder, so when it is watered down it will be the correct amount of powder. I hear someone say, why not make it 50/50 water and milk, and I bet I know who thinks that thought. After changing the dressing this evening I put Sue into a massive nappy thing. Horrid demeaning thing, but Sue philosophically said it has to be, as at night she has no control of her bladder. And being blunt, it saves me getting up, so I get a good night sleep. If indeed I can sleep. I usually pop a travel sickness tablet, they cause drowsiness and help me to relax. 8.8.10 - Sue is the strong minded once again, I just cry (nearly) all the time now, everything sets me off. Sue says she wants to get on and do things.  Her mind strong, but body very weak, she can barely move.  I have put one of those big nappy type things on, it did very well during the night, we both slept soundly until I woke at 6am, but Sue just sort of sleeps most of the time.  When she speaks it is soft but with meaning.  I tell her all the time that I love her have always loved her, in case it is the last time I get to say it.  The tears are flowing again.  She has eaten just over half a Weetabix with honey. I had a shower after dressing her wound and putting the nappy type pad on, my thought is to use that today, see how it goes, it is so unnatural, but it may save her stress and she can just spend her pennies when she wants.  I don't like it.  But maybe it will help her. After my shower I walked into bedroom and her eyes were in that half open staring type thing, bloody hell I thought she was gone, but she heard me approach, probably felt the tears on her upturned apple cheek and smiled. I got her downstairs ok.  She washed her face with a flannel. I think I am falling apart emotionally, this is a hell of a way to lose weight, I have lost 5lb in the last two weeks. Mind you I was getting a bit of a belly. I will keep an eye on that though. I need my strength. I ate my fish and chips with Sue last night, it is usually my favourite home cooked meal, along with chicken, but I just ate because I had to, I had no appetite and didn’t really want nor enjoy it. Any other time it would have tasted delicious with Sue sitting next to me watching something on tv and laughing together. Unless it was some zombie flick I inflicted upon her. Mind you, even she would admit she enjoyed some of them. Geoff and Margaret left at 1pm with my dad, he drove them to the hotel they were using and a taxi will be taking them home now. Sue was too tired to go into conservatory this morning, which was a shame as her dad spent most his time there. I got her out there for a few minutes this afternoon, but she needed the loo badly, and left me with a clean up job. The funny thing it doesn’t disgust me, anyone else yes, but not Sue, I just said don’t worry about it and proceeded to clean her up. Annoyingly it had messed up the dressing so that needed changing as well. Most of you skip over to the next paragraph now. Here is another description. Especially for someone, you know who you are. Sue always loved animals and I guess that the one place she may have wished to visit was Africa, her special place that she really wanted was the Rockies of Canada. But She might have enjoyed the animals of Africa, which brings me to the NgoroNgoro Crater. What has that to do with the wound, well, I hope the skippees have buggered off by now. If you have ever been or ever go to the Crater that is what the wound looks like, sort of. Another thing that made me cry was Margaret was siting with sue, I went in a pecked Sue on the mouth with a little kiss and Margaret asked can’t the doctor give her the kiss of live, it choked me up immediately and all I could do was touch her shoulder, shake my head and walk away, tears streaming, as they have just done now recounting it. I had another Slim Fast drink, food just doesn’t appeal to me at the moment, hopefully Sue might like a nibble on something later, and that means I have to cook, even if just heating something up, but it makes me eat something. This is just so so sad. It is ripping me apart. The sun is setting on yet another day together. I hate this time of day, I never want the day to end for fear of what the next brings. I hate leaving Sue even for a minute in case she dies when I am not there to comfort her. I dread walking back into the room and always look at her, see if there is movement. So far there always is. But one day soon there won’t be any movement. Just my cries of anguish. I lay next to her on the sofa, with my head on her chest, I can hear her heart still beating. I can’t think of anything new to say to her or ask her, I can’t think of anything that needs doing that needs her, other than everything, but what I fear is when she is gone I will need answers to a thousand questions and she won’t be there to answer them, she won’t be there to make suggestions or comments on what I do. 9.8.10 - The doctor is coming around later. I think Sue is in and out of consciousness. I don’t think she has much time left and it is killing me as surely as it is her. She is in bed, no way I am getting her downstairs, she just sleeping and has no strength and little to no response to my voice. She has whispered a few times that she loves me lots and lots. But mostly silence. The end will be even worse. This is what happened and the bizarre thing of recovery and her being wide awake downstairs from 3pm to now 9pm, the longest ever, still sleepy and quiet, but awake. I got Sue to bed about 9.30 last night, I was with her by 10pm. I slept until about 2am when she woke up very thirsty, she just drank and drank, her mouth and body was parched dry. She said she felt that the end was near and that her time was due, she really was close to death. I didn’t sleep much after 2am, I just held her. She didn’t respond much. I may have nodded off or had 40 winks between 4 and 5am as I woke up and expected her to be dead. She was still with me, but only just. I said you’re still here, she said nearly gone. I messaged dad and he came here just after 6am, on his way to work. He stayed until 7.30, we got little to no response from Sue. He left and she woke up, I asked if she wanted any water and she said she hadn’t had her cup of tea. I made her one and she drank it. I then changed the dressing and pad and she said she wanted to come downstairs. I went down to get sofa ready, but by the time I got back upstairs she was out of it again, this time even deeper. I called the doctor at 8am and was told he would visit late morning. I called the St. Peter’s Hospice nurse and she came out just after 10am. Again no response from Sue. The hospice nurse suggested a nurse come and sit with us, just in case. So we have had a nurse here from 2pm, they will work 8 hour shifts as and when needed. The nurse that is here now is now on poop duties, I will quite happily let her do that. I changed the dressing earlier. Other than that I have been quite happy doing what I do and that is caring for my wife and her saying she is comfortable. The nurse is down stairs and Sue is on the sofa, so how did we get from the bedroom and not one but two near death experiences to the sofa. After the hospice nurse left Sue woke up, about 11am, Sue wanted something to eat, I asked what, she said beans on toast, so she got it, a small portion. Then the second near death, and this one I really really did think she was a gonna. Her head turned to the left and she had no control of it, her breathing went very shallow, it lasted over half an hour. I had to put my ear to her mouth to feel breath. It was there, but slight. The doctor was due anytime, as I had requested him earlier and he arrived just as she was coming out of it. He could and did nothing just chatted and said it was the body slowly dying. He left, Sue woke up some more, the nurse arrived at 2 and Sue asked to come downstairs, so I carried her down. The doctor came out at 7pm for a check up. He was amazed at her recovery. But I do fear it is the calm before the storm. But will enjoy it whilst it lasts. There are indicators that there is a tumour on the brain, the above is them, I am told. They won’t scan, so obviously we will never know. I did make use of the nurse as I mentioned this evening for poop duties. Sue had slouched in the sofa and wanted a pull up, I did it and shortly after her head lolled back and I thought oh golly here we go again but it sorted itself out quite quickly. The nurse said it may have been me pulling Sue up too quickly and made Sue get a dizzy head, her mouth went slack and her pupils dilated. I have put extra pillows behind her head to support it and will try to remember to pull her up more slowly. I have asked Sue if she wants to go up to bed but she is content downstairs at present. We will have a nurse here from 10pm to 7am when they again change shifts. They are not “needed” but handy, taking my mind off things and I do allow them to do odd things, but I still want to do most things for Sue. What a day. What will tomorrow bring! 10.8.10 - The doctor called at about 8am and said he will be back tomorrow.  Sue probably has a high chance of the tumour having reached the brain. The reason is what is happening to Sue’s mind, I am told.  This is what happened this morning.  The night nurse came up at my bequest at 3am.  This is what Sue was saying. Sue could hear noises in her ears which were irritating her. She drank lots of water, she has a very dry mouth.  We getting some lozenges for that.  Sue put lip salve on herself. She then said that she had separated the vision she could see of the nurse and me together.  She put her finger in her mouth this she said was to separate the noises in her ears.  Her memory is ok, pretty much, but hearing and vision impaired a bit.  I suggested paracetamol, but she could not take them and concentrate on the water, so we dissolved them in water.  They were none dissolvable.  I will remedy that. They might prescribe medication to help this if the mind becomes to preoccupied, but the doctor said it is normal.  They have already prescribed sleeping tabs for us both, as we both had 2 bad nights.  Trouble was the first was her almost dying and then hallucinating or something.   The nurse went downstairs but Sue kept on wanting to separate things in her mind, she took quite a grip to my hand when I tried to move her hand away from her mouth.  I went and asked the nurse to watch Sue whilst I slept downstairs.  I could hear them talking and the nurse tried to distract Sue and suggested she close her eyes to block the visions or whatever they were.  Cross eyed? I could not sleep, so I went back up, Sue wanted me back she said she missed me, the nurse came back down.  Sue tried to continue her ramblings, but I suggested a new game, lets pretend sleep.  OK, I don’t think either of us nodded off, but we were both quiet and peaceful.    The nurse helped me change Sue this morning the nurse said Sue pretty much lifted herself into a sitting position, the nurse helped and guided the lift very slowly, Sue's head once again lolled back, and her eyes dilated, but she recovered quickly. Thankfully.   I had some breakfast, went upstairs to check on Sue and I asked did she want anything before I walked Bess. Her reply choked me up for an hour afterwards. She said “wolfie” I said pardon, she said “I will get to see my wolf now”. Around lunch time I saw Sue smiling and I asked why are you smiling, never quite knowing what she will say, she said she was smiling at my devotion to her. Well, she actually said, “your devotion”. They are pulling the nurses out at 2pm today. Well, they are sitting around with little to do. I am doing it all. It has been good having them here and I hope they will keep in close touch. At least the doctor also appears to be keeping a close eye on things. I fear for what Geoff will say at the news of them pulling out. I hope he understands that everything is in place and is being done to make Sue as comfortable as possible. The nurse sits downstairs even if I am downstairs anyway, so they not keeping any extra eye on Sue. The nurse sits downstairs even if I am downstairs anyway, so they not keeping any extra eye on Sue.  They just pop up now and again, but I pop up more, unless I up there anyway, or I get Sue downstairs.  Lunchtime today she said she wanted to come downstairs, but as I began to manoeuvre her, she changed her mind, said she was tired and wanted to stay upstairs.  What Sue wants, she gets.   I will try to get to dad's shop, if only briefly on Thursday, I asked Sue if she felt up to it if she wanted to come with me - yes.  So let’s see.  Thursday a long way off really for us. Following this afternoons episode and this evenings there is no chance of getting her in, just to risky. One of the shops neighbours will pop in on Tue to watch over her whilst I pop in for an hour or so. I probably shot myself in the foot with the nurses, as I did pretty much everything, but they stayed downstairs reading when I was not with Sue, I went out and she stayed downstairs, Sue upstairs.  She heard a cough, so went up for that. So I was a bit surprised at that.   They are sending in a district nurse, but she will only stay for a few minutes to say 15 minutes just to check up really, she was due this afternoon to say hi, but too busy, due tomorrow.   I must admit to missing the nurse, as much for the "company" as help, that admittedly I was not using, but Sue had another wobbly head business again and of course it was after they had buggered off at about 2pm. Sue wanted to come downstairs, I sat her up carefully, but in sitting up she just went all jelly like, sitting up on bed.  I laid her back down, and tried again, but same thing, I held her and waited but she was not really right, so I said she could not come down like that.  She sat up on the bed having a calshake. However when I offered a calshake she said it was too liquidy, she wanted something more solid, she wanted a cracker, ate one bite but put her finger in her mouth looking for something, I said not to do that try another piece, but she would not do that unless she sorted her mouth out.  So I took the cracker away and made a calshhake.  She drank that ok, I had to come down to make myself something to eat and I hated leaving her alone upstairs. It made me weep again. As she is sitting up a bit against pillows I asked if she wanted to make one more try at coming down, no, she said she will be sensible and stay, ok my words but that was her meaning. Then we come to about 5pm and she had another of her funny episodes where she is just out, breathing but no response to my voice or touch. I did contact the doctor, but as of 7.15 he did not come out, he probably thinks there is nothing extra that he can do, and he is right. The thing is she did come out of it. This is what happened and I had to inflict that wound and all its horridness on my father. Before I go on I just went up and she still not really with it. I go up very regularly and usually stay for ages, but I just have to pop down and type this also make a tea. Talking tea, I have had 2 rolls and weetabix today, not sure what I will have tonight. Sue had half a weetabix for breakfast and her 1/3 Calshake, but that it, she just doesn’t fancy much in the way if food. She does when she with it drink quite a lot of water. I will just go and see if she fancies a lemon barley, if she with it. She wanted Calshake, but she was not able to take it herself, so I gave her a few sips of it. I will give her a few more sips later. Anyway, back to 5pm, the phone went and her dad was on it, I spoke for a moment, looked please and smiled at who it was, so I handed the phone, she mostly listened and spoke the odd word, then she started answering yes three times in a row, it just didn’t seem right, the way she was doing it, I took the phone off her, but could get no response from her. I chatted to her dad, he was understandably distraught, and I could only say that it happens and that she should be ok soon. I said that her mind was messing her about. She stayed like that past when dad came in, he arrived after work, about 5.45, and I could see that her skirt was wet. So I felt that as I had company I would turn that to help, so with dad’s help we changed the sheet, it got dirty earlier, and removed her skirt and dressing, I don’t know what he thought, but he cried the entire time. I changed the dressing and sorted out that area. I dressed her and made her comfortable, but she made no voice response, but she could hear us, as when I asked her to try to turn her hip a fraction she did and lifted her bottom when I asked. Dad left, we hugged and cried some more. He had brought in some throat lozenges, I took them up and told Sue what I had. Nothing. I shook the box and she woke up instantly. She eagerly sucked one and then reached for the box for another. I asked if she had heard my dad’s voice she said she had, I could see that her eyes were welling up, she said she thought he had been cross with her. I said no, he was sad. He sent a message. This is it. “I could never be cross with Sue she was such a pleasure to work with. Irreplaceable. Work will not be the same. Luv dad.” I read her the message it greatly pleased her. I will keep a close eye on her this evening. When I reminded her it was my birthday tomorrow she beamed that smile. I hope she can get past tomorrow. I do wish the nurses had decided to stay another night at least. They could have documented all this officially. But there would have been nothing extra that they could have done over and above what I am doing. But they were a distraction for me, even though I cried a lot in their presence, they still helped. 9pm, I lay down next to Sue earlier, I will go back up very shortly, and stayed next to her, she turned on her side and appeared to snuggle up to me. The doctor phoned from home I think and asked how things were, he will visit lunch time tomorrow. When I came down for this small update Sue was snoring loudly, but no response to me at all. The Doctor said it is probably a deep sleep. Better go back to her. 11.8.10 – My birthday, I took a prescribed low dose sleeping tablet last night and I woke up at 3am and Sue was stroking my head. At 8am, I opened the curtains and she said another day with you. When I was doing the dressing and cleaning up her bottom her arms were out stretched holding onto me, stroking me, when I walk into the room they welcome me, she isn’t speaking but I can hear her voice and words in my head. At 10am I called her mum and dad she just managed a few words, but it was hard work, she could barley hold the phone, it slipped a few times. At least they got to hear her voice. She so very weak, I am amazed she still with us. The district nurse popped around about 11am and tried to take blood, they will send another at 9am tomorrow to try the blood again and to look at the wound and bed sore. Sue just had a half Weetabix, it was all she wanted and I had to help her eat it, she so wobbly and shaky with her grip. At least she comes to when I touch her at the moment and smiles at me. The doctor should be out by 1pm for a check up and update. I just stay upstairs with her most the time now, just pop down for this or a cuppa. I told mum that I had a steak last night, sorry, that was a lie. I really must try getting more food in me, esp a cooked meal. It just is not the same for just me, at least a few days ago Sue was attempting something cooked so I could do both, but now, I just look after her and ignore myself. Almost. I do shower, so there is no smell. When I am with her I snuggle up to her on the bed and she makes a good attempt, usually successfully to drape an arm around me, she has stroked me a few times on the arm. This is a new found affection of recent days, new energy, or just devotion coming forth, or a prelude. 4pm, after my ticking off, I ate 2 bacon rolls and will make the strong effort to cook something tonight. Sue liked giving Bess her buscuits in a biscuit ball, I usually just give them to her, but I thought why not put the biscuits in the ball and put it in our room, close the door slightly to stop the ball getting out and let Bess chase it around the room, hopefully the noise will stimulate Sue, who is again this afternoon very sleepy. When she was slightly with it earlier I asked if she minded me putting on Dog Soldiers, we have had it on DVD for years and never got around to watching it, mum said it was ok for what it is, not particularly scary, and I would rather watch it with someone than alone, so better do it now, well, tonight. Sue will probably sleep through it all. The doctor visited, he has a holiday for a week, and it was actually nice when he said he wished he didn’t and that Sue’s condition had been quicker than he expected, I didn’t mention about oncology stopping the chemo and therefore hastening Sue’s demise. Not that I am in the least bit bitter and twisted about the hospital treatment and dodgy advice and delays that Sue has received or in some cases not received over the past four years. The doctod could not really see the point of the calcium test, he suspected it will be high, but Sue would need to go into hospital / hospice for it, and that brings up a couple of points that he pointed out, firstly, the stress it could cause her to be moved, she cannot really sit up now without going limp, she does not want to go in, nor does she want to die any place other than home. But the hospice wanted to test, so lets see and go from there, but I think we need to go with the doctors advise and pass on it. He even said that the calcium if too high could kill her, but would that be a bad thing at this stage, hard but philosophical. He said an older person would be dead by now and had very high praise for Sue’s ability to fight it. A calcium reduction course would potentially only add a few days to her life, but probably do more harm than good to her. I don’t see that she wants to be shifted off, she happy and contented as can be. I think she very down about being so weak, but being so weak, she can’t dwell on it as she sleeps so much. This afternoon I popped around mums for 20 minutes and picked up a tape of tennis from yesterday, I will pop that on and watch some upstairs with Sue. I can’t read and concentrate at the moment, so that a good alternative. The film will keep until later. I also walked Bess to the doctor to pick up Sue’s scrips. So this afternoon seems to have flown and I have not seen much of Sue, it seems, but that is not the case, I pop up very regular. We have a new way of communicating, I ask a question she either nods or shakes her head. 6pm, been sleeping since the doctors visit, sometimes opens her eyes, but little to no reaction to me now.  A bit earlier she did nod or shake her head to a question, like a small dainty nod. She got to my birthday, that was good for today, but her quality is now just sleep, still when she wakes up, usually going by today, in the morning she a bit with it and smiles and strokes me. Her hallucinations have not happened again, too sleepy I guess. I now feel sad that I just tried to stop them or said there’s nothing there, as she at least was "with me" but she wasn’t really "with me" she was in her own little world, but she wanted to share something and I shut it out. At least then I could hear her voice even if she was talking nonsense, now she just sleeps and can’t talk to me. I have got a jacket potato on. I went most of afternoon without crying, thought about the hallucinations and now the sleep and off I went, tears falling, dry throat and mouth, just before I am due to try a jacket potato.  Still, try to stuff it down me. Got most of it down. She opened her eyes briefly, I think she heard the dog barking in the film, but when it stopped barking, she closed her eyes. There was no “life” in the eyes. I stopped the film as I wanted to bring my plate down also wanted to check her dressing as was thinking this the first time I would potentially need to change it with her totally asleep. I had to place her arm over her chest and gently roll her, when she came back her arm just flopped down, it made little noise, but was sickening, and of course the tears flowed again. The dressing didn’t look too soiled, I changed one small part of it and decided to leave the rest. I changed her nappy type covering, again I had to roll her to do this, and actually it was quite easy as she was just totally relaxed. She should be ok for the morning now. Hope we make it. 9.30pm, watched Dog Soldiers together, well, I half watched it and half watched Sue, she is totally immobile at this present time. Her arms seem to move about a bit from the elbow up, and the hand that I held did try to grip my hand a few times, her eyes also opened a few times and she could “see” me, she could also hear me as she imperceptibly nodded a couple of time. I just spoke in hushed voices that I loved her, that she was the greatest girl on Earth, that she had done nothing wrong, that covered the sorry she said the other day for thinking she had let me down, what rot, she has never let a living soul down. It is the most tragic thing that I have beheld. I don’t know what will happen at Christmas, that was never a favourite time of the year for me, no real reason, just feel sad at that time, well this will just confound that even more. I guess my birthdays will never be quite the same again either. I will head up now and hope she still with me tomorrow. But even I can see, sadly, there has to be an end, I hate to say it and don’t ever want her to suffer because I want to keep her. So it is her decision to go when she ready and I will support that with bucket loads of tears. I read a message dad sent, he said that she will be irreplaceable at work and that work will never be the same again.  I think after myself I think in some "funny" way he will be "equally" hit as her parents. I base that on that he treats her like a daughter, has said that, and worked closely with her and cooked for her for over 9 years.  I hope he concentrates on scripts, don't want him poisoning anyone! Good night. 12.8.10 - I don't know where she gets the strength from, but I say she is build like a battleaxe and dad says a battleship.  I slept soundly until 6am today, woke up fearing the worse, and I must admit what I saw was a bit of a shock, her eyes were open and blinking but it was clear she was stuck in that position all night, I got the strong feeling she could not move. I got up made a tea for both of us, put Sue's in a nipple bottle topped bottle, and got back into bed, I drank mine then put the bottle to her lips she took 2 or three sips and it went down.  I didn't push my luck. I then snuggled up to her and gently coaxed her on her side, she managed to put an arm around me.  She is still smiling and can answer the odd single worded answer to a question but usually there is silence, but I just live for the smile and the nod of a head. The district nurse came in, I had previously phoned the doctor, she said there was nothing to be gained from a blood test.  The district nurse agreed.  Let's leave Sue in peace to enjoy her time without tests.  I dressed the wound and asked Sue who is the best dresser of her wound she said you are. She is comfortable and in no pain. I will stay with her again today, I could not leave her alone for more than a few minutes while I make a tea downstairs and have a breakfast. The film was ok, not too scary at all, I think Sue would have enjoyed it a bit if she had been able to watch it properly, she would have liked the dog in it, collie. She did open her eyes a bit during it, for a few seconds, so I was watching her as much as the film, she was able to squeeze my hand as well. 10am, she sleeping now. I pop up and stay then pop down for a few minutes. Had my tea with Sue and took my Shreddies up. Eating toast for lunch, will have something more substantial later. I popped to mums for 45 mins. 2.45pm, we had a wonderful late morning, the doctor came out, a new one, Sue’s official doctor really, and she seemed pleased and amazed at Sue. She prescribed liquid paracetamol for any light pains. Sue in little to no pain. Anyway, after the doc left I asked Sue if she wanted a Weetabix, yes. So I did half, took it up, lifted Sue up a bit on the pillows and she went floppy, but it only lasts a few seconds, the doc thinks it is probably low blood pressure. Annoyingly the wound did a big leak and got on bed. So we had a terrific hour of changing the bed, I have to manoeuvre Sue about slowly and carefully but she was able to do minimal helping in rolling here and there, I had to drag her down the bed as she was too high to change the dressing I said its like moving a sack of potatoes and she gave the biggest grin you ever imagined. I changed dressing, then her nappy type dressing, and then the sheet, it is not too bad changing a sheet really, take one half off, put one half on and then roll Sue to the on one and away from the one to come off. A bit of jiggery pokery and done. Took a while, but we laughed and joked about it, too all intents and purposes. I kept telling her how proud I was of her, how happy I was that she was still around and that I loved her very much. She is an amazing amazing person. So STRONG. Like an ox. I am concerned about her dad, he does sound very sad and cut up on phone, but I try to give him all the good happy bits about her being pain free and smiling, and not elaborate on the sadder bits. Doesn’t help him when I cry talking to him, but that only happened once or twice. A dear friend of Sue’s family will visit them today. We doing ok on the whole today. It was a nice break to see dad at his shop this morning for 20 mins and then mum this afternoon for 15 minutes. Dry and bit of sun behind the cloud today. Sue is more wakeful today, when a friend phoned Sue was awake, she heard me talk about the pond and muttered a word, so I put the phone to her ear and she was able to hear Suzy (the friend) and muttered a couple words.  She sort of drifts in and out, but seems more lucid so far today, not in that deep sleep that she cant come out of, so far today.   I seem less sad today, I hope I am not getting too used to Sue being around in this state - if that makes any sense at all.  We "laughed"* so much earlier that I seem to be on a high and just so happy to see her.  *= a big grin from Sue or just looking happy and contented. 13.8.10 – Well, that sadlessish day didn’t last long, feel sad again today, but I think it is Sue’s down day. She keeps slipping into and out of sleepfullness. I managed to get three half full tea spoons of Activia Fibre yogurt down her, I ate the rest, but it was through tears, as she keeps falling asleep during a mouthful. That is about as much as she can eat. I contacted the doctor, she said that liquid is the main thing, so I am trying to get her to drink small amounts of water like 2 sips, from a Gatorade bottle. She also suggested the yogurt as well. Sue then managed to brush her teeth, but her hand and brush kept falling to her chest as she nodded off, it made me smile but in a very sad way. I slept soundly, mind you the tablet helped. It does mean I wake up fresh and ready for the next day. Again communication is either guess work on my part, or a murmur or nod of a head. You never know what it will be. The doctor will be out for a check up later. The hospice nurse phoned up and checked us up, she said I was doing everything that could be done. The wound is not as wet today. I asked if that was anything to do with the body slowly packing up, but was just told that wounds do funny things. This bugger certainly has, since the end of March this year! I have dressed it almost every day since then. One of Sue’s closest relations sent this email “Been following your blog every day, it's great in a way that you are still able to do it, it means a lot to me to hear how Sue is battling on. She is amazing.” I hope she doesn’t mind me pasting that bit. It means a lot to me to be able to do it and keep so many dedicated people updated; it also saves me from phoning everyone, which I just don’t have the time to do. Sue has a single tear in her eye; it is so small it won’t drop. She asked if we had had our morning cup of tea. Well I did make one and I gave her a couple of tea spoons of mine that is all she can manage. So I will make another and share it. Steak, peppers and boiled potatoes and carrots on the menu this very second. Hope it goes down a treat. I have tennis on upstairs so will take it up and tuck in. Hungry as a horse! But hope it goes down and hope I “enjoy” it. It is what I would normally love. I think the tear is a weepy tear duct. Just as well, I would not want her to be sad. She seems so content. The doctor was very complimentary about the care I am giving Sue. So I will take the gold star now, so Sue and I can enjoy it together. The food went down, Sue ate a miniscule bit of potato and carrot, so I cried with joy and sadness, then she said that I had a “full tummy”, so I cried again. OK, listen to this. A very close friend of Sue’s sent me an email, it was one of those pass it on emails, and I must admit I don’t go in for those and just delete them, however this one was sort of loosely about faith, now as you know I don’t have much “faith”, though there maybe is something floating about. Lord knows what though. Anyway, I read this email, went upstairs and said to Sue that I was going to make myself a cup of tea, out of the blue, she said she would like a cup of tea as well. I asked if she wanted to share mine and have a few tea spoons. Nope, she wanted her own. Anyway, I made the tea, took it up, drank mine. Dad came in from work, Sue reached out for her tea and as I said to dad can he help her, she knocked it on the floor over the bed and dad. So I went downstairs and made another tea. Once it had cooled down enough, I passed it to Sue, and she said that she had changed her mind, and maybe wanted a green tea. So whomever or whatever is up “there” is having a bloody good laugh on my account, cheeky bloody sod. Anyway, it brightened us all up and made me smile. I then went up after typing that and the wound had leaked on the top and bottom sheet. So, I changed the dressing, the nappy pad, then the sheets. Whilst this may sound a chore, it wasn’t as I was once again dragging Sue around the bed like that old sack of spuds and we were both smiling. No tears. So one cup of tea lead to a second, to a third to a leaking wound (it leaked as I had to sit Sue up for the tea) to dirty sheets to smiles and happiness. The washing machine is on, and a lesson learnt, if I sit Sue up a bit, put something under her bottom top save the sheets and be ready to change the dressing. If it were not for the tea she would not have sat up. I spoke to the doctor about that and she said to leave Sue in the flat position for comfort, but sitting up worked a bit this time and she didn’t go wobbly, mind you I found a good way to keep her mind occupied, and to hopefully prevent dizziness, something no self-respecting carer could ever do, kiss her on the way up. Seems to work! So whilst I may have been Sue’s knight in shining armour, it was indeed Sue who rescued me. BTW, she drank half the cup, I had to hold it as well, or we would have lost it. 14.8.10 - This is based on a few hours... Sue's friend from Oxford is visiting today, she should be hear early afternoon and the doctor is visiting very soon as we had a rough night. At 3am Sue seemed to be struggling to breath, in other words she was stopping breathing and then choking coughing slightly, but not a lot, only just enough to wake me up, which seemed to revive her. I rubbed her chest which seemed to help, but not a lot. So in a blind panic I dialled 999, actually I was quite calm, I even made a tea whilst waiting and drank it sitting next to Sue. They arrived quite quickly, within 10 minutes or less. They took her stats, BP was 60/30 - so very low, her oxygen was 85%. They wanted to take her into hospital, but thankfully I had the care plan that said no hospital. They still needed further confirmation so they tried a call out doctor, no luck. Thankfully I remembered our doctor gave me her phone number in emergency, I probably should have called her first. Anyway she talked to the ambulance crew and they left happy as by that time Sue seemed more with it and breathing normally again. Sue seemed to be still struggling for air, not panicking, her breathing just stops for a short time then re starts, this happened about 6am, I messaged dad and he visited at that time on his way to work, I was constantly massaging her rib cage as I felt it was that that was keeping her going, or she was just reviving her self. If she did pass out, we have a no resuscitation plan in situ. Thankfully she didn't stay out for long and I don't feel that I interfered too much with "nature", just did what comes naturally trying to keep a loved one alive a bit longer. Dad left shortly after 7 and I decided not to rub her ribs any more, she had been ok without that for half an hour anyway, as the morning broke she seemed to get more with it.. Though the funny talking nonsense babbling started again. The strange thing is when she does that talk it is often quite clear, her usual speech is slurred and not easy to understand. The doctor said it is probably due to low oxygen. By 9am she seemed more with it and asked for a tea, she drank a few sips, I polished it off. I said to her that “you don’t want to leave me” and she replied “I don’t now, do I”. She has started saying funny things again, she said she could see her mother in laws eye in a jigsaw. The doctor came out and she said to him he was a cartoon character. I wonder if she remembered that he was the one who said the massive lump on the leg was not a tumour and when further questioned by me, did not feel like a tumour when he touched it. Shame really as he is a really nice quietly spoken dr. He left Oramorph, a very low dose morphine cough med. They are getting oxygen out today, but only for if she is struggling, not to keep her going. If she stops breathing the doctor said to hold and comfort her. It arrived this afternoon and I used it, because it was there, she not particularly suffering, but I just felt I wanted to give her some. It did seem to settle down the ramblings. She sleeping or just resting peacefully now mid afternoon. I also gave her 10ml of meds. It was about 6pm when I knew were we in deep trouble. I had taken the oxygen off as it was not needed at that time, she seemed ok, I checked with the doctor and Lee, they both agreed the oxygen would only aid her passing not prolong her life. Whilst she was off the oxygen her throat clenched and I could see her really struggling, so I dashed off the bed, around to the oxygen machine, switched it on and attached it to her nose. It defiantly settled things down, she relaxed and slept. I left it off and thought it was time to do the dressing, I had not done it in the morning as it had not got dirty, a bit of a worrying thought kept creeping into my mind, if it wasn’t dirty, why, body shutting down I wondered. Whilst I was doing the dressing her throat clenched again and I grabbed the oxygen and put it back on her. Settled, I continued and finished the dressing. I lay next to her on the bed, but left the oxygen running. I was wishing it would give her more time, but it didn’t, shortly after that she started choking even on the oxygen, it was a very quiet dignified choke, no one out of the room would have heard it. Her breathing just stopped for a few seconds and re started, this happened a lot. She went very limp and I thought hat was it. I think in actuality, it was it. I think her brain was starved of oxygen and shut down. She remained limp. I was watching recorded tennis and I thought that some music would be more beneficial for Sue, so I switched off the television and grabbed a CD, I played the CD and feared Sue would go before I started it, but her breathing, despite starting and stopping kept on going, all through the CD. At about 6pm, I emailed Lee and said I don't know why it is happening, but she won't die. That sounds worse than I mean it. Her body has shut down, her eyes are glazed, she keeps stopping breathing then restarts, she is snoring at this time. I have been comforting her for 2 hours like that, and still she fights on.
It is not like the films at all. I know I should be with her now, and I will go back now, but I just had to take 5. I gave oxygen it settled her, then turned it off as she doing this ok off it now. It has not hit yet, I have not cried yet. She still fights even when the game is up. I think I will have to take a sleeping tablet and face it in the morning, I will see what the next hours hold...
If she does make the night, she won't be Sue, I am sure there must have been a lack of air to the brain, the body just on autopilot...
 15.8.10 – I typed a lot of this out on the day as messages to Lee, I have edited it slightly to make a bit more sense, the first is from Lee and describes what happened, exactly. “If she doesn't wake and the breathing is snore like with large gaps between the breaths...then yes...she is close. Giving her the oxygen now won't matter I'm sorry to say. She may last like this for a little while. She deserves peace now...”. She described it 100% PERFECTLY!!!  The only thing it is still happening 12 hours on in the morning. She did the breathing with gap business, the gaps were 20-25 seconds.  I could tell she was going, even on the oxygen she slowly went last night, but kept going, all night, I took sleeping tabs, hoping she would have died peacefully in her sleep by morning, in the nicest possible way, but nope, she still breathing in a shell, no response, eyes all glazed.  It is a crime! Mouth wide open.  I had to slightly turn the head last night to stop the snoring. It sounds so tragic and pathetic now, but it was irritating, I am ashamed to say, and poor sue would have hated the snoring. This morning her hand was shaking at about 8.45, she was still not moving, painlessly gasping for breath, hand quivering. That was a sign I missed. I comforted her but popped downstairs, at that time I thought and probably hoped she would go on a little longer when I went back up, her breathing had stopped, at least I saw her pulse in her neck still going, then stop, so she waited for me. Dad was a bit cut up as he said he would see her lunch time today and not on his way to the shop, but he would have been just as upset then, I think. I had given her lots of comfort prior to that and I told her I loved her very much, I hope she could hear me. In days gone by when she was able she would reply, I love you too. Sue would have just loved the doctor who came out, he was of ethnic origin, lovely chap, he gave me a hug, well, actually he put a hand on my shoulder and I hugged and cried on his chest. But, will you ever believe this as we walked into the room the bedroom clock ticked to 11.11. Told you that was my superstitious number!!! The doctor signed the death paper, I have to get a death certificate tomorrow from the local GP. She said she will bring it to me tomorrow, Monday lunchtime.   The funeral directors have been around and Sue has been taken into their care. My dad was with me, he wanted Sue to take her plastic blow up parrot with her. When she had the leg amputated February 2009 I took him in one evening and he brought the plastic parrot with him. I guess many amputees might have baulked at the sight, but Sue loved it, and found it most amusing and was quite cheered by it, as were all the other patients on the ward. One minute I am smiling, for some reason, must be Sue on my shoulder cheering me up, the next crying. As she had not been wearing a nightie, it was too warm, the funeral people said to find an old t shirt, cut it up the back and slip it on like a gown.  I did that a couple of hours after she died, I was quite horrified how quickly rigor mortis had set in.  She was so cold. The room was deathly.  I won't go to the body again.  I saw her in bed, that will probably be enough.  I don't think it would do me any good emotionally... to see her in the funeral home. I think typing usually helps keep me occupied, but not always, it is when I dwell or look at something that it hits.  I was by pond and looked at conservatory, but I quickly looked away, or I would have "seen" her there, and cried, turning away, I saved a tear, many more will follow. I feel numb, totally numb.  It really has not sunk in yet properly. I have had a couple of emails about “faith” recently and that Sue is being looked after. When this all kicked off in 2006 there were many times that I did look up, I remember them very vividly, as I was out walking Bess and Pippa and they were always in the same place. I looked up and said, please don’t let this be cancer. Cancer was always my greatest fear and dread. I was never much on faith before that, and to be honest if it had proved to be a haematoma I can’t have ever seen my self as a man of the cloth, but it put a massive dent in what little faith I do or don’t have. But remember what I said earlier, I do feel there is something there. A spirit or just my sixth sense, who knows, I don’t and I am not looking for it. I thank all those with faiths as well for getting in touch, that is appreciated, as I make and will make my position clear, but I do really appreciate your thoughts. I do believe that Sue is in a good place, not better, she was better with me to care for her and love her, no one can do what I did, but she will be looked after, that I do believe, also she can now look down on me and care for me as well. She can guide my hand. She may very well be being looked after, but I know she is now looking after me. After all to coin a phrase, it’s her time now. I went to mum’s this afternoon and had a few hours there, but I wanted to get back home and “be with” Sue. I cried but also smiled, I made a few calls to let people know. Tonight will be my first night without Sue for nearly nine years, less the odd trip away alone in the early days or her horrid, to me, trips to the hospital. The night wasn’t too bad, I went to bed late and watched some cricket that mum taped, that did help, and I know Sue would have enjoyed it, it was a T20 game, she liked those and I could imagine her thoughts and words. I also have some more pix of Sue that I took on our last Cambridge visit about 6ish weeks ago, once my mind on track, I will post them as well. I thank you ALL for your support and kind words below or in emails and look forward to sharing some of the past happy memories another time here. Sue was a very special lady, for many people, friends and family, and of course most of all to me. 16.8.10 – Lost. Totally lost, like a wandering albatross this morning. Made a few phone calls. Cried on most of them. The feint whisper of my “bye” must be famous by now. I have had one of Sue’s Calshakes, the last of the pack for breakfast, I looked at it and her voice called out, Calshake. I would ask what she wanted to eat or drink and she would just utter, Calshake, it was so sweet. Most of her speech over the last week or so was single quiet words. Oh, poor Sue why did you have to go. My day wasn't too bad, under the circumstances.  Funeral now booked.  I kept my chin up very well.  Took Bess with me.  I may go and see Sue on Friday, see how it goes, they asked, if they hadn't asked I probably would not have enquired as I am not sure how I will be emotionally, but as they asked, don't see how I could not see her. I spent a few hours with mum this afternoon. Lunchtime the hospice nurse arrived, she had not heard, so I told her the news, kept my chip up quite well then, but broke down when I mentioned the horse and carriage. Then the doctor arrived with the death certificate. I have an appointment at the registrar office tomorrow morning. And need to drop a few more bits off at the funeral directors tomorrow. I will give them some of Sue’s own clothes and her wig. I hope they still have the parrot and mum has given me an angel cat, as in a little cuddly cat with angel wings, so that can go with her, she can then fly with the angles, and float over the tussocks of Dartmoor. Although she said when I told her that that I will still be quicker than her on Dartmoor. I may watch Windtalkers tonight. The funeral will be at Westerleigh Crematorium, Westerleigh Road
Westerleigh, Bristol BS37 8QP on Saturday 21st August at 3.30pm. If people wish to donate money then I would like it donated to Animals Asia, as Sue worked with them to raise awareness and money. Their website is here https://www.animalsasia.org click donate bottom left or donate by cheque to Animals Asia UK Tregondale Farm Menheniot Cornwall PL14 3RG Just as an aside, if Geoff phones anyone who has read this, please, you don't know. I think he might be upset if he knew I was airing all and sundry. However I feel it is beneficial to myself and many many people. If people wish to send donations to the funeral directors, here is the address. Roy Preddy Funeral Directors and Memorial Consultants James House Cossham Street Mangotsfield Bristol BS16 9EN I will take the ashes to Dartmoor on our anniversary, 26th September.  We would have been married 6 years. Bugger. Hope the weather not too bad!!  Mum said she would probably come with me. But I did say it was a little trek that I will undertake and she will be alone in the car for a few hours. Late into the evening and still watching the film, got caught up on the phone having nice chats. The evening felt ok, to an extent, then I looked at the birthday card Sue wrote for me. She wrote “To my dearest Tony, I hope you enjoy Happiest Birthday Ever, Although the most Difficultiest, With all my love, Sue xx.” It is so wonderful in its simplicity and shows how much she struggled to write it. I will treasure it forever. The tears are flowing. Of course she signed the outside with SWALK. The same numbers are still haunting me. When I put the phone down from talking to Geoff, we had talked for 22 minutes and 22 seconds. 22.22. It was about an hour or two later he called to say he may have a slight problem getting transport here. Hope he is able to sort it. I then finished the film and walked in room to shut it down, and the DVD clock showed midnight, 0.00! I hope tomorrow is a goodish day. So they actually got something loosely right, then, bravo to them.  Just as well I don't drink booze or I would be sozzled, I will have another tea. I am ok.  Not sure ok covers it really.  I guess I am busy sorting things out and popped to mums again, will be doing a lot of that, that i don't dwell tooooooo much.  When people say how sorry they are that is when I break down.  The chap leading the service came around and when I read what he was going to say I cried. I also have a little something that I will say, I know what I would like to say, but of course, I won't.  If I am too emotional then Ray, the one in charge of sorting it out will read it on my behalf.  Once it finalised, i will email it to you. Eating ok, had chicken for lunch and a ham roll this evening.  Mum cooked the chicken.  Don't think i would bother cooking for myself, so thankfully got her at least. But it should not be my mum looking after me, it should be Sue.  Not that I want anything to happen to mum, god forbid!!! The mornings are lonely, waking up to a lone bed.  I used to snuggle up and stay in bed longer, but I am restless now.  I think it will hit home more next week.  After the funeral. and during it perhaps.  I hope I can speak!!  I will stay behind for a few minutes after they all leave, I have selected songs and 2 hymns. I have contacted the bank and credit card people.  Need to contact the disability living allowance people and all that tomorrow and then go to mums and watch cricket.  I still enjoy going to mums but it is less so, as i don't have sue to look forward to seeing after wards. Thanks.  I will keep in touch.  Yep, i think sleeping and resting will take time, I am just on addrenalin at the moment.  Whilst I do break down in tears quite a bit, I think others, like her parents, my dad and her closest friends are sadder, but that becusase I so busy at moment sorting it all out, and "enjoying" it, in some bizzare way.  Makes me a bit sick, i should not be "enjoying" it.  I did cry at registry office.  Even then i joked with lady on way out.  Talk about mixed up.  Sue would love the humour though, she would say only I could do that. How do you explain this....   I got a charity bag, one of those bags you fill and leave out for collection for charity, I just went upstairs and grabbed some of Sue's clothes that I had piled up on a table and not bothered to put away, not had time, nor inclination, and put them in the bag to go out tomorrow. Is that rational Itmakes sense, as they will be better off elsewhere now, but seems so cold, so soon.  I hope that Sue understands  I think she would see the point