Saturday, 31 December 2011
By rights I should be glad to see the back of this year and positive about all the good things that 2012 will bring. There were 3 massive highlights of 2011 for me.
Firstly it was my middle son's bar mitzvah in July and it turned out to be a wonderful weekend. It was also a chance to say thank you to all our friends and family for the support that they have given us and were going to give us in the coming few months.
Secondly we were extremely lucky to be taken on holiday by my in-laws for their combined special anniversary and my father in law's 80th birthday. At the time he was in the middle of his own battle with health issues but this holiday seemed to be a turning point and he has thankfully gone from strength to strength.
Finally there was the meeting of the transplant team in Oxford and the chance to change my life forever. As both my wife and I have said repeatedly we did not know what to expect when we walked in but from the first meeting right up until now they have been truly wonderful. A really inspiring team and I am lucky to be under their care.
So how was today? Well the last few nights sleeping hasn't been easy. My stoma output seems to go up considerably at night and that brings on stomach pains. Not really sure if the two are even connected but I go to bed now taking pain killers which I had stopped doing a while ago. Every time I go to change my bag and clean the stoma it starts bleeding quite a bit. This morning was a full change over of base plate and bag and it seemed to be bleeding from all sides. I have mentioned it to the team before but I will raise it again with my surgeon on Tuesday. I think half the trouble is I just don't yet know what is bad and what is not worth worrying about. I think that I will perhaps go through again with the surgeon some key markers to look for just to put my mind at rest.
No biopsy results yet but I guess it's bank holiday season so it will be Tuesday before I hear more.
At the moment I can't seem to shake of the sickness or the feeling of constantly being knackered. It gets very frustrating and today I got very fed up with myself. I am eating more each day but that is because my wife does a fantastic job of ensuring that I keep trying things. In truth if I had my way I would probably still be picking at the odd thing. I haven't yet got my taste buds back or any real desire to eat. I know that it will come in time but for today food was an effort. I do occasionally have a craving for salty things and we popped in to see my sister and family today and a few bits of smoked salmon went down a storm.
It was good to get out for a couple of hours and my sister and family were good company. Again it was another step towards normality.
So what will 2012 bring. A few ups and downs I guess but towards the end of the year it will hopefully be the complete normality that I really crave for. I guess my own resolution has to stay mentally strong for the next few months. Not always so easy but I am convinced that it will be worth it in the end. Right now I am reading the blog that my wife has been writing. There were so many things that I had either forgotten or just simply didn't know happened. I guess reading it has made me realise how far I have come, it's still just blooming hard work every day.
Anyway I need to end with a plea I am afraid. This July will be our 3rd annual Paris to London bike ride. 180 miles over three days with every penny we raise going towards Crohns/Colitis/bowel transplants. if you ever thought about doing something different then this event is it. A few years ago there was no such ride for Crohns in this country so my wife and I went to New York to do a ride there. My wife became part of the crew and I rode the 220 miles with fellow Crohns sufferers. It was one of the most exhilarating moments in my life, training was very hard especially for an unfit middle aged man like me, but I did it. My dream was to bring this ride to the UK and with the incredible help of 3 fantastic heroes the ride happened. So far we have raised £150,000 but that is a drop in the ocean. So if you are up for a challenge, fancy a laugh then please come along. WWW.GUTS-IN-MOTION.COM is the site with all details. Go on make my day and sign up.
So now all I want to do is wish you a very happy and healthy 2012. Thanks for reading our blogs and we will catch up again tomorrow.
Friday, 30 December 2011
That said I didn't feel my best today, just one of those things I guess. I altered my feed timings as requested but by 9pm the Stoma was gushing out in a matter of mins. As I write it has slowed down so hopefully a quieter evening.
It's the fact that it's still so raw mentally that I worry about the slightest thing. Anyway I will email the dietician tomorrow and see what she thinks. At the moment its just dragging me down a bit.
Aside from that I had to take a couple of pain killers which frustrated me as tummy was playing up. Again am just assuming its one if those things.
That is enough rambling for today it's time for bed. What was my goal today- a haircut to make me feel better. And yes before you ask I did make it.
Speak tomorrow just keep fingers crossed for some sleep tonight. Broken sleep is getting the better of me.
Thursday, 29 December 2011
It wasn't quite what I had planned for the day but we will postpone those thoughts for another year.
I have changed the timing of when I put on my feed in the hope that it might help stop the Stoma output going so high at certain times. So its now on at 9.30pm but sure enough by 10pm out it pours. No one really thought that the two were linked but this is the second day in a row so as promised I will let the team know what's going on. Who knows maybe clutching at straws.
Still needing the anti sickness at the moment and as its that time already I am going to sign off shortly.
One final comment though in the spirit of taking one small step at a time I did manage toast before lunch! Come on its at least a step in the right direction!
Wednesday, 28 December 2011
I spent most of the day back at Oxford going through the usual blood tests, consultation, scope and biopsy and a meeting with the dietician and transplant coordinator. Although it took a large part of the day every time I go back there I realise what a fantastic team they are and how much care and attention they take over me. If there is anyone reading this who has to unfortunately go through the transplant then I would urge you to meet the team at Oxford.
It was made very clear to me that this is a long road and I am really only at the start of the journey. It will take a year they said with many more ups and downs. I explained how hard it is at home and how I just yearn for normality but a reality check from the team did help a bit. As have all your kind suggestions and thoughts. I guess I will just have to show a bit more mental toughness to remember its daily goals that count whilst at the same time keeping one eye on the long term. It doesn't make it easy though.
Over the next couple of days I will get the results and then see what happens next. Am back to Oxford next Tuesday when my surgeon will be back and it will be good to catch up with him. He has this calming influence and as he is the one who did my surgery I always get extra comfort from his chats.
Tomorrow is our 20th wedding anniversary. Yes I really am that old! I had very different plans as to how we would celebrate but I guess they will go on hold for a year or so. I do though promise my wife that we will eventually celebrate properly. For now, well you all know the daily routine.
I think that's it for tonight. Still feeling very sore from the scope. Apparently my abdominal wall needed widening so in went the consultant with his fingers to stretch the wall so that the scope could go in properly. Ouch it still hurts.
Also I have been given a few suggestions as to how I might be able to slow down the output at certain times so let's see how it goes over next few days. I'm sure I will keep you updated.
Back tomorrow, sleep well
Tuesday, 27 December 2011
Set smaller and achievable goals he said that way you know you are making progress. Of course he is totally right and of course he makes total sense but the moment you come home and back to family life you crave for all the problems to disappear instantly.
I ate a fish finger today and had a drop of soup so that's progress or so I thought. Five minutes later out pours liquid from the Stoma. Are the two connected, I don't know but talk about a reality check. So what goals should I set myself for the next week. Suggestions welcome.
I do though feel that I am slowly starting to be part of family life again. The kids get on with their lives without even noticing that I'm sitting on the couch. My wife tells me off for making the usual husband comments at the wrong times. I mean having a look at my Stoma bag filling up while they are still finishing supper, how bad is that?
Today was a fairly quiet, chill out day and tomorrow its back to Oxford for bloods, scope, biopsy and whatever else is in store. I'm not sure if everything is as it should be because I have never experienced most of the daily trials and tribulations before. I must be getting stronger but don't feel it. I must be doing more but just seem to always feel totally knackered.
Tomorrow is my daughter's birthday and although I will be out when she gets up I am so happy that I will be back in time to see her.
I'll let you know how tomorrrow goes at Oxford but I suspect it will take a couple of days to find out.
Monday, 26 December 2011
Given that I was always forewarned by the transplant team that it would take a good year to get back to normal I am not even sure why I ask myself this question but it's the one thing that I think about when I lie awake at night, it's the one question that I ask every morning whilst going through the usual morning ritual and then again during the day as I struggle to do all the things that I want to do. Anyone who says that it gets easier when you go home is a liar it gets so much harder.
This morning just as we were going out the hospital called. You can imagine the immediate reaction. My wife answered and I think her first words were "oh no what's wrong now?" and the same time as she was uttering those words my brain had packed a bag, dropped the kids at friends and I was sitting on a bed at Oxford again. In reality the blood tests had shown that one of my levels had gone up considerably and the doctor I spoke too had received instructions from my surgeon that I needed to alter my drug levels. He knew I was due back for scope and biopsy on Wednesday so there was no panic from his side. The panic was my irrational mind. Stupid eh!
Finally we left for our friends and had a wonderful few hours talking as friends do without me thinking about my condition. It's so important for my family that we get a bit a normality back in to their lives but they couldn't help every few minutes just glancing over to check that dad was ok. It's funny because no one could do enough for me to help yet I became very frustrated that I couldn't just get up and down when I wanted, run in to the kitchen for a refill or even have a game of table tennis. I guess that's for another year but I think for some reason today I realised what I was missing out on but perhaps more importantly I realised why I had the transplant and how it really will change my life eventually. I have so many good times to look forward to and I just want my wife to have her normal life back.
For now it's going to be up and down. Again I always knew this and the team at Oxford have been nothing short of amazing in managing expectations. It's just supposed to get easier at home and instead it's bloody hard at times.
Right I think I've waffled enough, my stoma, from doing nothing all day has suddenly gone haywire so it needs an emptying and then it's tv time.
Tomorrow is another day closer to the normality we all crave, just a few obstacles to navigate I suspect before we get there.
Sunday, 25 December 2011
Perhaps that is why I have become a real old so and so who seems to fall asleep most afternoons. I just become knackered by mid afternoon, the body seems to shut down a bit and before I know it I've fallen asleep for two hours.
I think the kids think its funny but it would b nice to last a full day eventually.
Christmas Day was good though. I know how much the kids wanted me back for today and I must admit there was a time a few days ago when I didn't think I would be out. Just so glad I am with them.
I think my biggest frustration is that the body is not doing what the brain would like it to do. I'm finding it all very frustrating. Tummy hurts or is always uncomfortable, if the stitches don't pull then the it just doesn't feel right. Bad explannation I know but I can't describe it. One min my Stoma is pouring stuff out and the next its not but in truth its all very hard. Yes I know its a long road but boy do you need to keep mentally tough throughout and sometimes that isn't easy.
As always my wife is amazing but I am sure even she gets frustrated at times. I'd like to help more just can't at the moment. And so it goes on.
Its feed time now so I had better go and get that sorted. I don't want to sound too downbeat after all I am home, the bowel is work. I guess the rest will follow.......
Bye for now..
Saturday, 24 December 2011
So last night saw just under a litre of liquid come out but as I write things have slowed down again. The real pain is that I am up two or three times in the night emptying the bag, measuring it, cleaning up and then back to bed. After my first night leakage I do lie there thinking shall I get up, one more hour won't do any harm, then you hear the contents sloshing around so it's time to get up. Broken sleep had just become the norm. I am not sure if it will remain like this until eventually I have the stoma reversed or whether eventually things will settle down and the output will slow down at night in the way a normal person's body would work. Normal, that would be nice, can't really imagine getting there at the moment but I know one day it will happen it just feels a very long way off.
It's amazing how quickly life does return to normality once you are home for a few days. Seeing the kids go off with their friends, hearing the usual arguments at least means that they are just getting on with things. I think they just wanted to know that dad is around. For me things will take a little longer to settle down. I wish I could stop yawning but I seem to constantly feel physically knackered. Mentally I've never been all there so nothing new but physically it's all still very raw. Even the stitches where my feeding tube has been fixed are still sore and if I accidentally pull on the tube then..... well you can imagine.
Anyway that's enough of my moans. I might go for a quick walk before it rains. Then again it's freezing and I am a cosy on the sofa. Maybe in an hour or so.
Friday, 23 December 2011
I knew that my dad was collecting me at 8.45am but it's amazing how much you have to do just to be ready on time. Empty stoma bag, change bag, take off feed, give meds, take meds and all whilst trying very hard not to wake the kids let alone my wife. I think I managed three visits to the bathroom without waking her but the draw opening to get out the underwear was definitely my downfall and woke her up. Next time I'll be more organised.
Clinic in Oxford was the quietest it's ever been. Maybe it was a shopping day for all transplant patients but as soon as I walked through the door I was ushered in for bloods. Then out came the 12 test tubes and I knew that this would take time. The phlebotomist was very good and she managed to get through her full Christmas day menu, what presents she had bought, the fact that she was having beef not turkey but would cook turkey for her other son on boxing day. I learnt all that and still had three tubes left to fill. Still it passed the time. I dread having bloods done at the moment. My veins are knackered and it's always 3 or 4 attempts before anything comes out.
After that it was a short wait to see the registrar and consultant both of whom were excellent. In truth no one is quite sure why things are so up and down. It could be due to the rejection, it could be just one of those things and at least they are honest enough to say so. I always fear the worst walking in to the room but in my heart of heart I knew that they wouldn't keep me in on Christmas unless it really was essential. As I write this I am waiting on blood results. They may be back today on the other hand they may not so no news is good news at the moment. I have the wonders of a scope and biopsy to look forward to next wed but in the meantime I'm hoping that it's a few more days at home.
I am trying really hard not to worry about things as they happen and just put it down to post transplant ups and downs. Again they warned me that this will go on for at least another 6 months and to focus on the long term. Not so easy though, for me its a bit day to day right now. I can't get my head in to gear for a week ahead let alone a month.
Not sure that I have more to bore you with today, of course if I get any more news I will let you know but hey it's two days at home, pretty good eh.
Thursday, 22 December 2011
Anyhow after being sick a couple of times my stoma output started to get quicker. Not that you really need to know but on average about 300ml would usually come out in a day and when I emptied late in the evening the same amount had come out in one go. Immediately the first thing that goes through your mind is oh no not again. Then you argue with yourself, shall I call Oxford or shall I wait. Believe me I have a list as long as my arm of triggers to look out for and sure enough sickness and high output are high on the list.
I couldn't though be certain that it wasn't just a little blip as opposed to something more sinister. Temperature taken by my resident nurse was normal so I decided a good night sleep would sort things out.
You should have heard the noises coming from the stoma as we tried to get to sleep. It was basically as if my stomach was farting non stop. Aha maybe it was just trapped wind so I didn't panic and went to sleep. You know when you have a nagging doubt in your mind and it won't go away? Well that was me but it didn't stop me nodding off. I had just heard that QPR had lost to a last min goal so I was frustrated anyway, this just added to the mix.
It's the usual ups and downs in the night. Always forgetting that my feeding tube is attached and always pulling on it as I get up and forget to take my feed with me. This time though the tube is stitched in so you can imagine what it's like when it pulls, ouch! I woke again at 6am with that awful aroma again. My wife says it's me as she can never smell anything, I think I will need to put a splash of Brut down the bag to make it smell nice. Thankfully I did get up and was greeted with a completely full bag that had also seeped out on to my top. By the way I hope you aren't eating at the mo. Anyhow after draining a large amount I realised that my output from late last night until now had been over a litre well above my usual levels.
Now I was a little worried, my mind racing with all sorts of things but the good thing was that the belly ache had improved. Anyhow I did what I was told and phoned Oxford fearing the worst. Thankfully the team there responded very quickly and told me not to panic. I just need to keep an eye on things today and I am due at clinic tomorrow anyhow. They may well have to scope me and biopsy me again tomorrow but at least I am still at home.
In truth it could have been anything causing the upset and hopefully over the coming weeks and months I will learn not to get so worried but everything is still a little raw.
So all in all that was my night last night and my day so far. Have been resting this morning and just had a few bits at lunchtime. The afternoon injections are done so now let's see what the rest of the day brings.
Wednesday, 21 December 2011
If you don't mind reading two blogs then I would be delighted if you have a read of my daily posts both my blog and hers will have links to each others so it should make it easy.
So let me recap about life from my perspective since 8th October.
Somehow I seem to have blogged a day after my op from intensive care. In truth I have absolutely no memory of doing that at all. In fact I have no real recollection of the first few days post transplant at all. Obviously I have been told all about the care given to me and the team that looked after me but I feel terrible because I don't even remember who did what. My last memory before the op was of that walk to theatre. The most nervous, scary 100 yards of my life. I'm not really sure how I kept it together or even if I did but I do remember giving my wife a kiss goodbye walking through the doors and just wanting to cry as I physically shook with nerves. I remember then climbing on to the table in the anaesthetists room and feeling freezing cold. I kept saying can you just put me to sleep but it was about 30 mins before that could happen. Sticky pads that linked up to various monitors were stuck to my chest and I remember thinking that I wished I didn't have a hairy chest as it would hurt like hell when they pulled them off. A line was put in to my arm, a few other bits and pieces were done and then the surgeon popped in. He tried very hard to reassure that all would be fine but by then I wasn't really focusing I just wanted to go to sleep. Finally the big syringe came and the famous words "count to ten". I think I got to about 4 but who knows I was finally out for the count.
All I remember about intensive care was the intense pain when I did wake. Originally they were going to put an epidural in but on the day they changed their mind and gave me a pump which I could continually press to ease the pain. The pain was like nothing though that I had experienced before but thankfully I think I fell in and out of sleep for a while which was great.
Although I have no recollection of being transferred back to the ward or who was looking after me in those first few days. I do remember that every time I woke up I would feel down below (no not that low!) to try and get an idea of what it was like with a stoma. I couldn't face looking but just wanted to know what it felt like. Before my op they had marked up two places where the stoma might be; either to the left side or right side. In the end all the new bowel was transplanted to the right side of my body so that's where the stoma is. I'm not actually sure why it bothered me so much. I mean it wasn't as if I didn't have other things to worry about but somehow the idea of part of my small bowel being outside my stomach didn't sit comfortably with me. Looking back now I realise what a plonker I was to be so worried about this but 11 odd weeks ago it was uppermost in my mind.
After a few days I think that I started to get my brain in gear and realise the enormity of what just happened. For a while I couldn't get it out of my head that some poor family had lost a member and that I had benefited from this. I had some one else's small bowel inside me. It's a very weird feeling and until you go through it I guess it's very hard to explain why. Then there was just the overwhelming disbelief that at 42 years old I had just had a transplant. Transplant - these happen to other people not me. I don't even know why these feelings even happened after all we made the decision to go for it, no one had dragged me kicking and screaming to theatre I think it was simply the emotion of the situation that overtook me. That and a few drugs inside me.
As you know I went back to theatre about a week later as the I kept leaking from the wound. At the time I hadn't even realised that they used staples to put me back together so when I recovered from the second op and saw stitches I just assumed that they had been used in the first place. Again why was I even bothered about this, I don't know. With all my previous surgeries they had used staples so perhaps that is why I even thought about it. It's amazing what drivel you think about. I mean stitches, staples who really cares as long as it was closed properly. I was though incredibly disappointed to have to go back to theatre. I do though remember the nurses calling my name as I was trying to wake up, I have really clear memories of being asleep, hearing my name but not knowing how to get to the end and open my eyes. I remember dreaming that I was in a Star Wars movie, then I met Moses and then I was going to meet the Queen and all in the space of a few seconds. When I did open my eyes I think I expected Prince William to be there. Don't ask me why, lord knows what tricks your mind plays on you.
I think I recovered from that second op pretty quickly and then started to get to know the team looking after me a lot more. My surgeon, who is an absolute genius, was in my room every day looking in to every blood result, every little ache and pain and was completely on top of the situation. What helped me the most was that he took the time to explain what he had done, what might happen and what he was going to do to try and improve things. The team at the Churchill Hospital are incredible. The nursing care really is the best I have encountered. Of course there were one or two that I didn't always get on with but overall they were and continue to be superb. I became paranoid about little things. I felt and still feel that I can smell my stoma every day so each time I emptied in I wanted it taken away quickly. They were brilliant at little things like this with the exception of this one time. A nurse, who was not looking after me, popped in as I had pressed my bell. He took away my urine bottles and then managed to spill the bowl with the contents of my stoma all over one of my counters. Don't worry I hear you say he mopped it up and cleaned it all within 2 mins. Oh how wrong you are. In fact he left it and scurried out quicker than I could say flatulence! Unbelievable. I did though then see the definition of pay back. My own nurse came in and horrified. She ran out and yelled for him to come back and watched while he cleaned up all his damage. It made me smile, it made her smile and funnily enough I wasn't assigned him again for some while.
Without doubt the hardest challenge in recovering from the transplant was the mental challenge. So many highs and lows and I found it very difficult to keep positive the whole time. The team would continually talk to me about the long term, about the fact that I need to think where I will be in a year's time. For me it was hour to hour, a year was way to far ahead. Come to think of it a week seemed an age away. You all know that I entered a phase of quite bad infections. One minute it would be the shakes and feeling freezing and the next minute it was very high temperatures. I'd go from 8 blankets on top of me to covering my body in ice cubes to try and cool things down. At one stage I had my wife and kids stuffing ice cubes in to the rubber gloves that the nurses used so that they could be balanced on my feet and legs. All I actually wanted was one day of feeling normal. I remember clearly saying just give me one day to get my strength back but of course that wasn't in their gift to give.
From the brilliant transplant coordinator, to the head dietitian, to the pain team and nursing team the support was superb but I felt lousy. I really tried very hard to keep my spirits up for the family but it was a dark time for me. I couldn't see the kids because of infection. Even when the surgeon had a cold he wouldn't come in to the room and night after night I would lie awake just watching the clock tick round. I'm not ashamed to say that most nights I would have a good cry to myself. It was in this period that for the first time I began to think was it all worth it. I knew that I needed the mental strength to get through but when you go from four sets of antibiotics in one day to none the next as they grapple to get to the bottom of things it is hard to take. I can't really compare the emotional roller coaster with anything else that I had been through. Twenty previous operations didn't prepare me one iota for this. If there was one thing that I would say to the transplant team when they talk to prospective patients is test their mental strength. It is so so important perhaps the most important thing you can take in to this process.
Whilst struggling with infections I did though start to realise that the pain from surgery was getting easier. Every few days they would drop the pain relief and I began to move around a bit more. The night that I was able to put ice on my feet was sheer bliss. I could bend over and actually touch my feet. Then I could stretch up and switch on my light and slowly but surely the pain eased. It was like I would laugh and cry all at the same time. It's a bit like watching QPR.
Although I hadn't seen the kids for a while my wife was able to bring in a dvd of the boys bar mitzvahs. Our youngest son Nathan had only just had his in July so it was fresh in the mind and I just wanted a reminder of what they were like. I know it's a cliche but you only realise how much you miss your family when they are not around you. Every hour that my wife wasn't with me I missed her and I longed to just see the kids for a few mins. So there I was watching the dvds with tears rolling down my face. So proud of them, so happy just to see them even if it was on a screen but I guess it just reminded me what I was missing. if anything though it did give me the resolve to get better for them. I have always said that I would take all the pain if it meant that they never had to suffer and I would stand by that a million times over.
Eventually the infections started to improve, the shakes became less frequent, temperatures came down gradually and very soon I got that day that I longed for, I started to feel better. I'm not ashamed to say that in the beginning I hated the sight of the physio coming in to the room. It was painful and I didn't feel that she was sympathetic but in reality the early work they did helped me in the long run. So if you are reading this, sorry if I was rude to you! Gradually my wife and parents would take me on walks down the corridor. My wife always encouraging/pushing me to go a little further. She would know exactly which room I walked to last time and always seemed to remember to push me to the next room. How could I let her down but I'm sure I muttered a few choice words under my breath.
Another thing that I eventually started to conquer was the fear of my stoma. Something does eventually click in your head that says your stuck with it for a while so you have to just get on with it. Gradually I learnt how to clean it, I even started to touch the stoma and realise that it didn't hurt. The best way of describing what it feels like is a softer version of touching the roof of your mouth. For some reason mine bleeds a bit when cleaning it so that took time to get used to it. One of the nurses said to me just treat it as if you are wiping your bottom except your bum is on the front of your tummy. What planet was he on!!! They say practise makes perfect and now I really can do it without any worries. At the moment I use a two piece contraption, one bit is like a base plate that sticks to your skin and you cut a hole in the middle to go over the stoma and then there is a bag that clips over the top to collect... well you know what it collects.
As the days went by so I decided that I would get in to some sort of routine. Bloods would usually be taken around 6am along with my anti sickness drugs then I would try and get an hour or two sleep before getting up to wash, change the stoma, make my bed (yes I was often forgotten but it gave me something to do) and be ready for my wife's morning visit. Washing was ok but you try washing your own hair with a stoma bag and feeding tube dangling down that you can't get wet. At first my wife would kindly do and then one day I thought this is silly I can do it. Yes I could but what state would the bathroom be in. Bending over in the shower, sticking my tube to my bag and wrapping a towel around my picc line to ensure that didn't get wet would have been the funniest site ever. Anyhow it took 6 towels to dry the bathroom but I did it. How proud of myself was I and all I had done was wash my own hair.
The next challenge was actually set by the surgeon who knew that it was time to put together an exit plan. He decided that I should go out for a few hours and get used to life outside the hospital. The dietitian on the other hand had another challenge. I could only go home if I could tolerate my feed going up to 100ml an hour so that it would only run for 15hrs. The second challenge was the hardest part bearing in mind that I started and could only tolerate 20ml an hour. Again though it was a challenge that I needed to overcome. It was my ticket home. The first challenge was more of a tough one for my wife than me. As I can't walk very far she had to lug a wheelchair in to the car and then push me up and down hills. We did though have a few lovely journeys out, or at least I did, she was probably knackered but never once complained. We saw quite a bit of Starbucks and even Peacocks but my highlight was always Waitrose - it's such a posh supermarket. We'd park in their car park and always pick up some nosh for my bedside. Knackered was an understatement when we got back but I could have a sleep, my poor wife then had to drive home. I honestly don't know how she had the energy some days, she is truly an incredible person and I love her very much.
After ten weeks or so it was time to go home. I'm not ashamed to say that I was extremely nervous and excited all at once. I was desperate to be home but it was like my comfort blanket was being taken away from me. You all know what happened a day later so no need for me to repeat it. For me it wasn't just the disappointment of having to go back it was the fact that the word "rejection" had come in to the equation. They termed it mild acute rejection but for a while I didn't hear the first two words just the last one.
Again I had to pick myself up and be positive. I think that I have got better at staying positive but again alone in my room I did find myself very fed up and frustrated. I ended up having three scopes and biopsies and staying in longer than had been predicted. After all three rejection was still there and that does leave me with nagging doubts in my mind. I am on new drugs and face another scope and biopsy next week. I guess that will be a telling point to see if there is progress. If not then what next? I don't actually know, maybe I shouldn't even worry about it but you can't help it.
I came home again yesterday and it is the greatest feeling that a dad and husband can ever have. To sit down with all your family around you made me the happiest man possible. Tomorrow I will pick this up again and fill you in on the rest of my journey. All I know is that it will be a journey with lots of twists and turns, lots of ups and downs but for now I'm home and that means so much.
I hope you didn't mind this long opening blog. I promise that it won't happen again but I thought that you might like to know what it was like from my side of the bed.
See you tomorrow.