I'm glad to say that things seem to be slowly improving. Yesterday I left home around 10.30am and, can you believe at that time of day, got caught in M25 traffic. Anyway, LBC kept me highly amused talking about successful sportsmen who were born on 23 March and was this therefore a significant date. I did nearly call in to comment on how it must be as that's Michael's birthday and what a great sportsman he'd been in his youth before Crohn's had struck, and how strong he'd had to be over the last few years. Needless to say, I didn't call in!!! When I arrived, Michael was in a deep sleep - he heard me arrive and mumbled something before going back to sleep. Didn't think ththat was too positive but a short while later, he did wake up and seemed much improved since the day before. A little heavy eyed but nonetheless improved. His pain relief pump had been taken down and he was purely on oral drugs. Still in intermittent waves of awful pain but definitely more with it. And what were we left to watch with no Olympics? Murder She Wrote! Talk about an easy watch - can't believe when I used to watch it all those years ago that I didn't guess who the murderer was within the first 5 minutes! Midsummer Murders, which followed, was a tad more complicated :) With hospital food being as delightful as always and no means of heating up food, I had to think of things that Michael would eat, cold!! We went for tongue (out of a packet as I refused to cook such a revolting thing) and chips from the canteen. I'd like to say he wolfed in down but I was there to ensure he finished it. Chopped liver and pita break for dinner. Suggestions welcome! Today again was more improvement. Looked much better and not as drugged up. He'd seen the surgeon who again was happy with his progress and suggested it was time to get up and shower - the warm water may help the supposed shingles. After lunch, he plucked up courage, showered and washed his hair. Did he feel better? Perhaps no, but he definitely looked and smelt better :) The Dermatology Team came round to have a look at his itchy painful areas. Far from happy having all these people looking at places no one should have to look at!! Anyway, it was decided that it was not shingles (apparently shingles does not spread and only affects one side and as Michael's had spread, this was a sure sign that it was not shingles). So what is it? Maybe an infection or a reaction to something but now no way of knowing as it's clearing up and therefore impossible to tell. Typical - another 'something' that can't be diagnosed. More cream given to rub into affected areas - Michael can do that himself. So - how long will he be in? Who knows. Hopefully next time I write, I'll be able to tell you. Till next time x

Stoma Reversal Time!

Well it’s been quite some time since I’ve written. Has this been because life as returned to normal? I wish. It’s been easier – not many visits to Oxford – although still lots of complications but generally we’ve been getting on with things. You have to don’t you? Michael’s definitely not one to sit back and moan and we’ve been keen on having a ‘regular’ life. Little bit of socialising and thoughts of what to do with life when Michael really is strong enough to return to the working world (and me too!). Basically nothing very interesting that people would really want to read. But now, the journey continues as Michael has just had his stoma reversal. Yep, that ‘thing’ he took so long to adapt to and then, happily showed anyone, has now been tucked back inside!! We had a week’s notice that it was going to happen. We thought originally that he was going to be scheduled in for the end of July and when the date came in, typical, we’d been given Olympic tickets for that day. As much as we’d like to have postponed the op, the reality was he wasn’t going to wait especially as the likelihood was it wouldn’t then be till mid September. So the great day planned with Michael and the three kids (a first in a long time) never happened. He went to Oxford and we went to the Games (and how amazing it was). Thankfully the op which took place early afternoon on Wednesday was a success. But..... yes, where Michael concerned there’s always a but. I spoke to Michael that evening, he was obviously drowsy but in fairly good spirits. After sorting the kids on Thursday, off I went back on that well known trip to Oxford. He was very uncomfortable as he’d developed a haematoma (bit like a bruise but worse) which is ‘one of those things’. This was extremely painful but he was on his fentalyn pump which he has used previously for pain relief. Because the pain was so severe, the dose had been increased (whereas before he had just pressed a button when needed and it had given a dose – obviously controlled amount – they had upped it so that there was also a background amount of drug always being pumped through). Hadn’t managed to get out of bed because of the pain but was moving around in the bed. Had to have an enema (joy for anyone!) just to clear out any mucus that was remaining – all that and no mucus!!! We spoke on and off, in between him dozing and groaning but it was only day 1 after a general anaesthetic. Saying that, I think we both thought it was going to be a quicker recovery - I’d prepared food for him but he was only on sips of water (actually lucozade – but once I saw his glowing orange teeth we swiftly switched to squash. I know, water’s better but he refuses!!!). At around 5pm, he started dozing again – I was happy as he was exhausted. Starting twitching – nothing unusual but then....... it was what I can only described as ‘convulsive’ twitching which worried me a little (we’re talking seconds here) at which point I moved closer to him, gently calling his name – no response. Then he just stopped, stared ahead (not even sure if his eyes were open or closed) and went whiter than white. I pressed the nurse call button (actually it was his pain relief pump!) and then ran outside where thankfully a nurse was sitting at her station, called her in and said something was wrong. This really did happen in a matter of second – quicker than it’s taken me to write this. All I can remember is sheer panic – calling Michael’s name out and him with absolutely no response. That’s the time I dashed to the nurse. She came running in by which time he was a little alert and actually knew her name (which was positive as she wasn’t actually his nurse). Michael was very disorientated – both Michael and my first thought was that it was his petit-mal returning (yes, as well as everything else, he’s suffered with epilepsy). That would be totally unfair. The two Reg’s on the floor came rushing in, proding, etc and asking lots of questions. Their initial assessment was it was too much Fentanyl, which affects the breathing. Although Michael was ‘with it’ at this stage, he was confused, clammy and obviously worried (he could see the panic on my face which didn’t help). This ‘overdose’ meant he then had to have an injection to reverse the affects of the drug and then also ‘hold off’ from the drug for a while. More panic for Michael ‘how can I cope without my pump?’ At this stage, I still wasn’t convinced this was the problem – obviously we know better than the Doctors!!!!! I also felt helpless knowing that Michael was going to have to be pain relief free while his vitals were being checked. Thankfully all the checks came back clear so it looked like that was the problem. It was decided that he would move rooms to a more high dependency room where nurses would be there round the clock if there were any more complications. Later that evening, the pump was put back on, without the background amount being administered. It was the longest few minutes of my life. I wasn’t happy about leaving but I had to get back home. I didn’t go to the hospital during Friday and it didn’t help when I got ‘confused’ calls from Michael telling me he was in so much pain. I told him to leave the phone and I would liaise with the nurses direct to find out how he was. He’d had a terrible night (although I didn’t realise how bad until I got to the hospital that evening) and because of the severe pain, they’d taken him back down to Theatre to make sure everything was ok. Thankfully all was ‘perfect’ but why so much pain? Aaron and I (2 other lucky children are away in the sun) then went to Oxford early evening. I decided to use those credit card points I’d accrued before they expired and booked us into a hotel nearby for two nights. Couldn’t stomach the thought of driving back and forth the whole weekend. We checked in and then went straight to the hospital. He was in a worse state than I expected. Apparently he had another ‘turn’ in the early hours of the morning and they’d decided to stop using the Fentanyl altogether and give other pain relief. Hhe’d been in excruciating pain and he really thought ‘that was it’. Maybe I was better of not knowing that this had all happened whilst I wasn’t there. He was a little more comfortable and they had at this point suggested it could be shingles AGAIN. How unlucky can one person be? Not only shingles, but in the nether regions!!!! Meanwhile, bloods to confirm take about 4/5 days. As much as I don’t want him to suffer such pain at least it would be an answer. Aaron and I ate our packed supper (Michael and I had thought it was going to be a packed supper for 3!!) while Michael dozed occasionally, whilst of course watching the Olympics. He seemed a little more comfortable when we left him. On Saturday morning, rather than dashing up the motorway, we had a nice lie-in and then a leisurely breakfast. We found Michael much the same – comfortable intermittently, with periods of agony. His surgeon came in and suggested anaesthetic cream for the nether regions and also that the rectal catheter be replaced with another type (how can one be better than another – ouch!). He’d had the catheters put in on Friday as he’d been in too much pain to worry about going to the toilet. The pain of the hematoma and the shingles was exhausting. He also wanted Michael to start eating and drinking – not easy when you’re in an NHS hospital. Anyway, when the catheter was changed that was Aaron and my excuse to go and buy Michael an icecream. We left Michael early afternoon as he was more tired and definitely time for a swim (for us anyway). We returned to the hospital just in time to see Mo win another gold (go GB). Michael had spent the day trying not to press his pump full of new drug as he was so worried he would have the same problem again. The nurses reassured him this would not happen but I’m not sure he was convinced. We all watched the diving – tense stuff – and it was great to see Tom Daley win a bronze. Oh yes – I guess I should mention that Michael was comfortable-ish. We did get him to eat an M&S tuna sandwich but he wasn’t willing to give the lemon and lime jelly a go. I was that nag willing him to eat as always. Sunday morning we drove up the motorway – I mean we had another lie in and then started the day with a swim, Jacuzzi and sauna – bliss, breakfast and then to the hospital. Michael had slept the latter part of the night, from about 4am (shame – cause we’d left him – and missed Tom getting his medal- because he’d seemed so tired). For a change, he had been left to sleep rather than being woken for a lovely breakfast of cold toast and tea. Only problem was of course, he hadn’t eaten  Again, intermittent bouts of terrible pain, although he hadn’t put any of the anaesthetic cream onto his sore bits – which he then did. It doesn’t take the pain away completely anyway. The surgeon came in again and said he really wanted both catheters out. Not good to keep them in and rectal one didn’t seem to be working too well and he was concerned that eventually everything would back up (sorry to be so specific) and cause problems where the sutures were internally. And also he wanted Michael to stop being immobile at this is never helpful in recovery. Michael wasn’t happy but knew he had to agree. Managed to get Michael to eat another sandwich (not very exciting I know but a bit difficult to get him anything else). Funny thing is, he makes me feel bad for keeping pushing him to eat but he seems to wolf it down. He then prepared himself for the first thing to be removed. Aaron and I stood outside the room – a loud yelp and we knew it was out. Back to using bottles for Michael. The remainder of the afternoon was its usual pattern of sleep, pain, bit of a food, pain, Olympics, sleep, pain, but he seemed to be coping ok – ish. By 4.30ish (sorry – lots of ishes in this blog) the pain seemed to be getting worse and Michael really wasn’t sure what to do with himself. His nurse had told him to use his pump as often as was allowed to prepare himself for the ‘other removal’. Not a nice thought. He’s never ever wanted me to sit ‘s there oohing and aahing at his moaning as that’s obviously completely unhelpful and I do always try to be positive and not let it all show that it’s getting to me but I really wasn’t sure what to do to help. Was conscious that I didn’t want Aaron to see his Dad suffering;; and also didn’t want to tell Aaron to leave the room as that maybe made more of a deal of the whole thing. Only a short while earlier Michael had been telling (actually constantly repeating) Aaron that he hoped he had all the pain so that his children never suffered. Meanwhile by this stage he wanted me to take some of the pain and then happily offered some to Aaron. Why can’t Michael’s recoveries ever ever ever be bog standard. We left just before Michael’s nurse was about to do the ‘removal’. Somewhat painful I’m sure and then the finale of using a commode (hospitals are so degrading – although I’m guessing me detailing it doesn’t really do Michael’s cred much good). By the time we got back home, he’d texted to say all removed and he had a successful finale. Pain was still there although perhaps a little easier (nurse seemed to thing the balloon which keeps the catheter in place wasn’t helping the pain). And so, day 4 ½ over. We both thought the weekend would be slightly different. We knew he wouldn’t be home but naively believed he’d be able to have day release and that the three of us would have left the hospital for a few hours. How wrong could we have been? It’s been another rollercoaster – and I absolutely hate theme parks. I’ve managed to hold myself together. Actually the best way I’ve managed this is to keep it all to myself – I know it sounds ridiculous but actually I can’t really cope with everyone worrying about me and also I don’t want Aaron to feel like I need the support. If I keep a brave face on everything (I guess pretending), it gets me through. Once I start telling my story, I give in and it wasn’t fair to Aaron (who’s such a good, gentle, caring, son) , who I was spending the whole weekend with, to be put in the position of feeling like he needed to support me. Also, it’s easier for the kids to cope if I play thing down (I think?). Apologies if you feel I should have told you – just my way of dealing with things and why should everyone worry when I can do it so well. If you’re reading this and you’re on holiday, I feel I can happily (not convinced happily is the correct word) blog about this knowing that it’s pain which will eventually go – no point in unnecessarily worrying anyone when there’s nothing you can do. Yes, he’s still in pain but I believe all the trauma is over. He’s been checked and double checked and all looks great - a beautiful bowel apparently (sorry – no pictures). We’ll see what tomorrow brings. Not sure what the two of us will watch on tv now the Olympics is over. I really hope the pain eases but from what I remember when he had shingles in his eye, it takes a good week. What more can one guy take? I will keep you posted. Surely things must get easier.

Been a long time......

 It’s been a while since I last blogged.  To be honest, I really haven’t known what to write – although life has been far from normal, we’ve at least got back to some sort of routine and Michael’s been home.   Well he’s been home more often than not – the occasional hospital stay and the bi-weekly trips to  Oxford for routine tests.

And then, two weeks ago, having gone to Oxford for what we thought was routine tests, Michael was admitted for ‘routine’ fluids (he’s quite often dehydrated because of complications relating to the Colon not working.   This is because of his stoma and there is now talk of him having a reversal earlier to solve this problem.  That’s another story which I’ll go into later.).    He went in on the Thursday (half term – fabulous!!!) and all plans were for him to leave on Monday after he had his balloon inserted into this stomach.   Now this is the problem with not having written for so long – so much information......   Basically it’s been discovered that the sickness Michael has been suffering from, although originally  put down to bacterial problems in the gut, has in fact been because the stomach muscle which pushes all the food down, is very tight and therefore not doing it’s proper job.  When we discovered this it was a bit of a ‘told you so’ moment – having been querying whether the sickness could have been related to the stomach (you may recall that he had stomach problems prior to his op which they said would be solved once he had a new bowel).  Anyway, the balloon is meant to stretch the muscle so it can work properly.

So balloon all scheduled, and he would be able to come home Monday afternoon.    But (and there always seems to be a but nowadays) on the Saturday , 10 minutes after we had left from our ritual visit, he came down with terrible shakes, temperature, etc – yet another bug. So..... regime of antibiotics  while Michael had to deal with the hot and cold temperatures.   Think we’ve been here before.  He was strong enough to have the balloon inserted on Monday.   I wasn’t there – it was the kids last day of half term and, not for the first time, I was pulled in many directions, and the kids won! 

Like most of my life at the moment, the rest of the week was a bit of a haze – continuing antibiotics and various tests and waiting to see if the balloon would work.  To date, nothing and he’s now scheduled for botox this coming Monday.   ????? I can hear you all say but you’ll have to wait for more information on that one.

Meanwhile, we were quite excited to receive a letter with the date of Michael’s stoma reversal.  Very big news for Michael – we always knew reversal would happen and more than likely around a year after the transplant.   Because of the dehydration problems, the surgeon decided that it should be earlier and being given a date was (notice the was???) fantastic news for Michael.   A real bonus.   On Wednesday he had a test which is check that all is ok with the bowel so that reversal can go ahead.  Yippee – all fine.   The date coincides with Aaron’s GSCEs, which obviously concerned us, but we decided that as long as we were completely open with our discussions about it, with Aaron, then there shouldn’t be a problem.   Something else for our poor children to deal with.

By the afternoon – it felt like our hopes had been dashed.   We were somewhat surprised (as well as hugely disappointed) to be told that in fact reversal could not happen until Michael was at a good nutritional level.  Apparently reversal can disturb the nutritional balance of the body and therefore it needs to be at a good starting point.   Well this was complete news to us –  something we’d never heard before.  Actually I’m not sure we’d ever heard about any nutritional balance.    I think both of us have been fairly accepting of the all the information we’ve been given – we totally  understand  and always knew that with Michael being only patient no. 11 that he was a bit of a ‘guinea pig’ and I guess it’s not bad that it’s taken  just over 6 months for us to get to the stage of being so frustrated.   Not even frustrated because the reversal may be delayed but annoyance that we’d thought it was pretty much fixed that it would all go ahead.  Nutrition was somehow just thrown at us.   If only it was as simple as throwing it back L 

So now Michael’s feed (and that’s another thing – never really realised how long he’d be on this bloody feed for) has to slowly be increased so his body has the necessary nutrients; he’s now on something or other for his pancreas which I believe is something to do with digest enzymes;  he’s not allowed to eat very much because the balloon doesn’t seem to be working (will explain more in a a bit) and generally I’m not really sure where we have progressed to.   Oh yes – his bowel is perfect it’s just a shame it can’t be worked properly because of all these complications.

The botox is not a present from my husband because of all the extra frown lines I now seem to have.   Apparently it’s something that will now be injected into the stomach muscle to relax it.  Up until today it couldn’t be done for a few more weeks because the stomach had to get over the balloon.   But today, when I thought perhaps I would be collecting Michael from hospital, he gets to ld that the procedure may actually get done on Monday and therefore he’ll b staying in.   Well that just made my day.   There was me thinking how lovely – all the kids are out this evening and Michael and I could have a lovely quiet evening together.   But oh no – here’s me, sitting on my own, watching some naff film.  Had a good look at all the bottles of wines I thought could share the evening with me and then decided it was pointless as I don’t really like wine and what was the point of opening a bottle of wine so I could just use it in the cooking!

So why am I blogging today when I haven’t for so long?  I think mainly so I can remember a little more of our journey.  You can most probably tell that I’m not in the most positive of moods today.  I generally just get on with it and as I said, we’re in a sort of routine.   But honestly, I’m fed up waiting for things to be normal; for Michael to eat and have a normal life; for us to be able to go out together; for him not to constantly feel sick; for me always have to put a brave face on things; for us always trying to be positive in front of the kids; for me feeling like a single parent.   I’m just fed up of it all.

I think maybe now it’s time to sign off.  Another early start tomorrow – our lucky middle child at DofE tomorrow.   How wet is he going to get!!!???!!!

Perhaps now I’ve blogged again, I’ll do it more often.  Putting moans down on paper is very therapeutic – shame it doesn’t change anything xx

I am still here

Well it's been sometime since I last blogged, but lying in bed this morning at 4am - unable to sleep,having woken myself up thinking it was Monday morning and that I had forgotten to take Lauren to a Bat Mitzvah party the night before - I was dwelling on my life and thought I should blog, a) cause otherwise you'll think I've left the planet and b) thought it would be a bit of therapy for me!!

If you're reading Michael's blog, you'll see that our life revolves around the feed and his output - joyous!! I have to be totally honest and say I'm not reading his blogs much now as living with it is one thing; having to constantly read about it is too much. There may have been a lovely valentines card for me this week, together with some yummy chocs (which I eventually asked Nathan to hide from me as I didn't have the willpower to not eat them all in one day!) but romance really is dead at the moment. Michael generally looks really well (someone did comment that he'd lost weight but when we're were last at Oxford, he gained, so I think that's actually his face just going back to normal after the steriods) although the more I think about it, he could actually pass as a Dr Who character, with so many tubes/attachments.

I won't say it's easy with Michael at home the whole time. It's lovely while I type this that the corner chair is empty and his computer is firmly shut. We do take the dog for walks but other than that, he generally sits in front of the computer and tv screen, with phone in hand. I did suggest that perhaps he should take up cooking (again) but that was a firm 'no' - think that's all related to 'food issues' which I'll discuss later. He's trying very hard to see what his future can/will be business wise when he's fit and healthy and it's great that he's focused enough to do this. I guess though it's the feeling that we're together so often but it's not really quality time and not like when you're working and 'time off' is fun. It's just ...... being at home together. Those days of saying goodbye in the morning and then catching up in the evening are a distant memory (not sure I can even remember it!) and I look forward to those times again, when we can have an occasional day off together which is exciting. I know, when life returns to 'normal' I'll be moaning that we never spend any time together.

My new hobby is baking - no bought bread in our house anymore. Have even ventured into croissants which were a great success. I've always loved baking - just the not eating it that's the problem. We do have a joint task this week though of hanging wallpaper in the lounge. Had a slight water issue a few months ago and now the wall has dried out, it's time to decorate. I prepared it all before the half term and now I'm just hoping once the paper is hung that the leftover paint we have in the garage will match up. There's no way I'm painting the whole room, so if not, nobody look in the corner of the room :(

My frustration (well one of them) at the moment is Michael and food. I'm trying hard not to pressurise him in anyway but I'm sure if you ask him he'll say everyone is pressurising him. He's back to his old habits of eating when he fancies - which is never. Generally he'll always have breakfast but after that he'll only ever help himself to chocolate, chocolate and crisps. At dinner time he'll usually have a taster of what we're eating, again under sufferance, and lunchtime he'll eat if I mention food. The idea is that he eats little and often, when he fancies. His idea is that he eats nothing and never, when he fancies. I think for the last month or so everyone seems to be so focused on his 'liquid feed' that he hasn't had to think about solid food. Michael has always said if he could have a Mars and a tablet a day to keep him going, he'd be more than happy. Now...... he can have his liquid feed instead ..... arghhhhhhh.

Thankfully Michael is now driving so at least now we can split the chauffeuring duties. Only problems is, I constantly worry when he's in the car on his own. Ridiculous I know - he's a grown man, but I'm so used to doing all the driving and knowing where I am and how long I'll be (if you know what I mean), that when he's out and about I'm constantly clock watching. Today he picked up Nathan from the stables (going to have to train him to start doing the early shift and taking him). 10 minutes later, the phone rings. There was me thinking 'god forbid accident, car problems, got lost.....' and meanwhile it was Nathan asking if I could run a bath in for him. I'm just going to have to re-train myself to acknowledge that Michael is convalescing, not incapable (guess that's a matter of opinion!).

We're back to Oxford on Wednesday, where I'm hoping this week's list will be answered and I'll understand a bit more of the recovery process. In the same way, when Michael was in hospital and the Doctors used to come in and I'd happily accept and acknowledge everything they said, then the moment they walked out, I had a list of questions, it's now got to the point where I'm not quite sure the direction we're going in recovery wise. How long will he be on this feed; how do we get him to eat food without any pressure
and without realising he's doing it, what to do about the anti-sickness patches which aren't working (as they are keen to get rid of his PICC line which is where he presently injects his anti-sickness)????? We'll see what the day brings.

Well, it's been lovely sharing my thoughts with you all. Do feel a bit 'lighter' now.

Till next time.

xx

Got home eventually!!!

Shortly after my last blog, Michael reappeared and as expected they had to take bloods from his PICC line. We then saw the transplant nurse - quick discussion on how Michael felt he was progressing and then school uniforms and teenagers!!!

Michael then had a quick meeting the the pharmacist to discuss change in drugs and back to the Ward to see the Surgeon and Nutritionist (and to collect Michael's phone charger which he left on his last admission). Scope was undertaken but as the Surgeon was so pleased with how everything seemed to look, he didn't do a biopsy. We had long discussions with the Nutritionist and it was agreed that Michael would change feed (a lower sugar level feed as sugar does not help when there is bacteria in the gut), another course of antibiotics as still bacteria in the gut and eat anything Michael fancies.

We didn't bring up the subject of Michael's PICC line as we knew the Surgeon had plans to remove it. We thought we'd got away with it, but just as we were finishing, the Surgeon remembered. Poor Michael! Anyway, it was agreed that Michael's going to try the patches and oral anti-sickness drugs; see how he responds and if all ok, the PICC line will be removed. The Surgeon said that 'psychologically' that would be big progression for Michael - funny but we both don't see it that way. If it was Michael's stomach tube that was coming out, then that really would be progression. I look forward to the time I can tell you that he'll be tube free!

Then on to the Pharmacy to collect all the drugs, which obviously weren't ready so a pit-stop at the cafe (that's cafe not café) for a drink. Naturally the half hour wait they told us was in fact 1 hour, by which time it was just past 2pm.

We were very lucky with the traffic again and it was only 1 hour home. I have to admit I am getting rather bored with listening to Radio 2, as that's the only station I manage to get on the drive out of Oxford. When Michael first went into hospital, it was quite nostaglic listening to Steve Wright - happy memories of my teenage years. But now - finding it a little boring so any suggestions of other radio stations would be appreciated. I guess Michael and I could also pass the time talking but on the other hand, we'd already spent time in the car on the way there :)

So another fortnightly Oxford visit over. Feel happier today that things are progressing. Happy with everything we discussed today. It's exactly four months to the day since the op, and I think Michael's doing really well. Yes, life is far from normal but as we keep discussing, we haven't had normal for many years. We're coping and I guess that's good in itself.

Tomorrow, I will be back to my usual unexciting, unbloggable life but I'll report back at some stage.

xx

I haven't blogged for some time as I felt no one was interested in my daily life of dog walking, cleaning, baking keeping Michael company and giving just the right level of sympathy and generally just keeping myself busy whilst we wait for some major breakthrough in Michael's recovery.

Now, sitting here in the waiting room at Oxford, I've realised I'd much rather be doing any of the above. We arrived just before 10am. It's now after 11am, and I'm struggling to stay awake. Michael was called about 15 mins ago for his bloods. I'm guessing that as he hasn't returned, they're having the usual difficulties and he'll either come out black and blue, or they'll give up and take the blood through of his PICC line.

Think this is the busiest clinic has been since we started coming. Think it's going to be a long day .......

Justine

read my blog:www.the-transplant-wife.blogspot.com

Whoops!

For those who have read last night's blog, hope the error made you giggle. Michael obviously went back to hospital. For those who have not read it, error already changed so no giggling for you!!

Justine

read my blog:www.the-transplant-wife.blogspot.com

I wasn't in Oxford today, although I have heard that Michael didn't spend the day in his pyjamas!!

He's had his scope and a biopsy taken of the ulcer; his on fluids as he's quite dry; day 2 of new drugs; and hopefully home soon. They are pretty certain that the problem is the bacteria overload so hopefully once this is sorted he'll be back on track. He should be home in the next couple of days and then I guess we'll go back when he's finished his course of meds.

It's terrible how easily the kids and I have slotted back into 'dad's not here' mode. They took it so well when I told them on Tuesday that Michael had gone back into hospital. I'm sure it's because they could see that Daddy wasn't unwell but knew he was just having problems. I felt quite ridiculous notifying the school yesterday (always like to keep them up to date just in case the kids do have a problem at school) that Michael had gone back into hospital but stating that the kids didn't have a problem with this. I know I've mentioned it before but how sad is it that our kids have adapted so well to all these hospital stays and ill health?

The corner sofa does look quite empty without Michael and his computer sitting there, but hopefully he'll be cluttering up the space very soon.

xx

12.50 pm

So here we are again in Oxford - Michael in his pjs sitting on his bed, watching Loose Women together. Did just query with Michael why he doesn't get dressed and sit on the chair. Answer? Can't be bothered and chair too uncomfortable.

We're back to the usual routine - walk to shop for paper, watch morning tv, read paper and tweeting (Michael not me). Seems daft that he's back in when he seems so much better but obviously get that they've got to sort this feed problem out.

The Surgeon has just seen us. The plan is - scope and biopsy tomorrow, as well as biopsy of the ulcer he still has. Not doing today as Michael has only just come off Deltaparin (blood thinning) and therefore not good to take biopsy of ulcer which already bleeds. Just about to connect back to the 'new' feed - yes, same problems will occur but obviously still got to get nutrition. Input/ouput will be closely monitored.

Michael started a new drug last night - ciprofloxin. They believe the problem is connected to too much bacteria in the gut. This is caused by the feed sitting in the gut before being absorbed and 'fermenting' which causes bacteria overload. It will take about 10 days to see whether this works, at which stage a further drug is needed to put 'good' bacteria back into the gut. I'm just hoping he won't have to stay in for that whole period.

Will keep you posted.

xx

Justine

read my blog:www.the-transplant-wife.blogspot.com

Tuesday 23 January 2012

There was me moaning yesterday that I didn't think the feed was the problem, and today the hospital called to say the Surgeon wants Michael back in to investigate further. I wanted to go with but the hospital didn't really want to wait until tomorrow as a bed was available (I did request a sea view for Michael!). Bad enough that Michael was going back into hospital, without the kids having a clue, so I didn't want to not be around when the they got home. Thankfully his Dad was around to take him in. I'm now waiting to hear that he's arrived, although I can't imagine that they'll be much 'investigations' today.

Obviously we were both disappointed that Michael's had to go back into hospital but hopefully it won't be for too long and, more importantly, they'll sort out these problems he's been experiencing.

I'll keep you posted.

xx

Monday 22 January 2011

Cannot believe another week has flown by. There I was worried about when I'd get my next lie in, and I've already managed to squeeze 1 in!!

Last week was, as expected, exhausting. Les Mis was a fabulous show and I was very proud of Lauren being part of such an amazing production. The biggest shame was that Michael couldn't watch. I know Les Mis is not his idea of fun but to miss his baby on stage is so unfair. Meanwhile, there I was worried about how I was going to get her out of bed each morning and actually she wasn't too bad - I didn't cope as well. As there was absolutely no chance of me getting out of bed any later than 7am each morning, I did, for the first time, take Nathan to the stables in my pjs and dressing gown yesterday and then climbed back into bed until 10.30 am. Absolute bliss.

We had the busiest, but loveliest weekend and, as always, Michael was not able to join us. It was our dear friends' son's Bar Mitzvah and it was wonderful that we were all (of course, not Michael) part of both the Saturday and Sunday celebrations. On Saturday morning, I left Michael in bed, not yet ready to get up. I popped back at lunchtime, just to check all was ok and he was comfortable in his usual corner seat of the sofa, with phone, computer and dog for company! When I returned again in the afternoon - feeling guilty that he'd spend so much time alone, he was in his usual corner seat of the sofa, with phone, computer and dog for company!. Not sure whether he'd moved at all or not. Of course, everyone asked how Michael was and whether they'd be seeing him over the weekend and I repeated the same old story ...... 'no - too much risk of catching germs when so many people' and, in answer to 'how is Michael', the usual response of 'looking much better, getting stronger but insides doing very slowly'. Don't get me wrong, it's wonderful that so many people want to know how things are and care for us both, but my answers always feel so inadequate. The reality is, there's not going to be any major leap forward in how Michael's feeling from one day to the next. One friend said but 'you know he's improving, he looks so much better - think where you were a couple of months ago' but, in truth, Michael's internal problems, for him, don't feel much different at all. I'm sure if I could put our lives pre-transplant and post-transplant side by side I'd say what an amazing improvement there is but, to be honest, I can't.

Michael is really struggling with this whole feed thing. I'm sure if you were brave enough to read his blog on Saturday, you'll know the problems he's encountered (and if you have ready it, I apologise!!!!). This is exhausting for him and frustrating for me. As I said last week, we had all our questions answered when we were in Oxford on Wednesday but by the time we got home, we felt that we hadn't really progressed anywhere. I still really don't understand why Michael bloats up so much when he's on his feed. In my opinion it's like it doesn't get absorbed in the system, and collects like a filled up balloon. When he's going to pop, I'm not quite sure.

He's had two days off the feed, as advised, and today he went onto the new feed which they gave us. The positive was that he didn't have the usual outpouring that he normally gets when on the feed. I did initially think - yippee, maybe I shouldn't have been so pessimistic and maybe this new feed will be the change he needs. It's now 7 hours later, and the output has began to increase and he's feeling extremely bloated again. So I'm back to my usual frustrated self. I can't help thinking that perhaps something just hasn't kicked in and isn't working properly. Am I wrong to assume that if the bowel and stomach are working properly now, that food/feed goes in, goes through the system doing the necessary work and then comes out??? I understand that certain proteins may be too heavy to digest at this stage, so a soft diet is preferable, but just don't understand why the rest isn't working more 'normally'. Until normal happens, the sickness isn't going to get any better either. And so we go on......

The Nutritionist, who Michael is in constant contact with, has said if this new feed doesn't work, she has other ideas. I can also contact her at any stage, with any queries I have but at the moment I feel that perhaps I'm a little negative about the feed itself being the problem and I will therefore wait and see what other 'goodies' she's going to get Michael to try. I truly hope I'm proved wrong and that eventually, the feed will get sorted and in turn the bloatedness and other problems will be solved.

If only Michael could get more calories in him to get off the feed altogether. That's easier said than done though as with his limited soft diet, there's only so much he can eat. He is doing well though - porridge most mornings and then a selection of either omelettes, choc mouse, strawberry mousse, chopped liver, pates, yoghurts. Any other suggestions welcome please!!

Feel awful - just had a call from my daughter, in a blind panic as she's just jumped off the school bus as she realised she had an afterschool lesson, which I too forgot about. I have noticed that I just don't seem to be able to concentrate properly on anything and my mind jumps from one thing to the next. Normally I'm so good and reminding the kids what they're up to after school, but today I forgot to tell Nathan about his after school rehearsal but did remember in time to text him. Lauren? Completely forgot - perhaps if I'd looked at my phone earlier I would have noticed the reminder that came up and could have texted her so she didn't land up being so upset. Oh well - managed to calm the situation.

My mind has now (again) wandered off so rather than rambling (although I may have already done that!), I will say goodbye.

xx

How being at home can drive two people crazy!!

Just some observations today......

Is it me or is it quite obvious that crackers do not generally go in the soft food group? We sat down for a late lunch today - Michael put a piece of bread in the toaster and I told him that toast wasn't really soft food and reminded him that his soft diet is to help with his stoma output. No problem until he then sat down with the box of crackers. I have to admit that I did lose it but in my mind it's so very clear that there's absolutely no difference between crackers and toast.

Now I know Michael's trying to be very helpful around the house - you know, putting things away so you don't know where they are..... Well I was in the midst of cleaning the toilet - had sprayed the cleaner on it and then got side tracked into doing something else. When I did go back to finish the job off, the seat was down (when does a man ever close the lid?!). So - he'd managed to use the loo and not notice that it was covered in cleaner :)

Just the usual daily routine - argghhhhh!!!

We were back at Oxford for the usual tests today. Horrible driving conditions today but thankfully we made it in good time. Bit of a false start though. I took the kids to school today - just meant Lauren got a bit of a lie in as bed time so far this week has been midnight!! Came home to collect Michael who was panicking as he'd just found a hospital letter stating he had an appointment for tomorrow. I did remember that we had definitely made today's appointment but then had received a letter detailing appointments for last week, tomorrow and one for 2013!! I had left it to Michael to phone and sort and, of course, he hadn't. So, he called the hospital to double check and we then waited for them to call us back to confirm before we set off. Anyway, made it by 10.20 am which was pretty good - especially as I'd woken and heard that there'd been an accident around our stretch of the M25.

Not too much hanging around today, although we were still there till after 1pm. Bloods took forever as usual and then we met with the nurse to go through any problems we were experiencing. Most of our questions related to the feed, so we held off until our next meeting. The Nutritionist believes the problems Michael is experiencing is definitely from the new drug he was put on before he came out of hospital, which he stopped nearly two weeks ago. This takes about 14 days to clear from the body and therefore we will see if everything calms down by the latest, Saturday. My gut feeling (don't normally talk about my gut) is that it wont make any difference, and it's just the actual feed that's causing Michael the problems. But it's all trial and error at the moment, and we'll see what happens. She did give us a new feed to try out (guinea pig style!) if things don't improve and see if that makes a difference. Food was also discussed and she feels at the moment, Michael should try and keep to a soft diet - ie. custards, yoghurts, mushed vegetables (bet you can see his face if I gave him that!), cheese sauces, etc.

No scope today as the surgeon felt there was no need. I did query that Michael still looks very bloated - a bit like when he was on tpn. The surgeon felt that now Michael had a functional intestine (rather than the hard lump he had pre-surgery) that this was his normal shape. Neither of us are convinced and I guess like everything, it will be a good few months before we'll really see what the final 'picture' is.

The whole way home all I could think of was my lovely soft bed. Having also had two late nights (well for me anyway), I was feeling the worse for wear. Didn't really help that I had to drive to Oxford today. Know at certain points in the journey Michael was definitely holding onto the seat and double checking that my eyes were still open. Made it back in good time (under and hour) and literally climbed the stairs and threw myself on the bed and had an amazing hour and a half snooze. Feel so much better, although another late night awaits Lauren and me.

Do Michael and I feel like it was a successful day? Not really (although not unsuccessful). Not like we came away with any definitive answers although we both realise this is the nature of bowel transplant. Hopefully (for others), 10 years down the road, there will be more precise answers on the sort of queries we have.

xx

Monday 16 January

Blogging gaps are becoming longer now - not really convinced I've enough to fill a daily page.

So how have we moved on since last I wrote? To be honest, no where very much. Yes - Michael is slowly gaining energy and our walks are becoming slightly longer. He's still feeling pretty rough most of the time, although now he does have more periods of feeling slightly better as he's been told by the Nutritionist to stay off his feed for two days and back on for one. Basically, it's not agreeing with him, for various reasons, together with his bowel working too quickly - again for various reasons, and they are looking at changing it (I think?!) and putting him on a new drug (something to do with having too much bacteria in his gut). We're back to Oxford on Wednesday for biopsy, etc and hopefully we'll find out more then. As ever, the team have been excellent - Michael has had numerous conversations and emails with the Nutritionist trying to get the problem sorted. I can really really see the difference with Michael now on the day's he's not having his feed - mentally and physically. He's just had his two day's off and the feed went back on tonight. He was far from happy about this and it means he wont get such a good night's sleep. I so wish he could eat enough calories to fully get off the feed. He is doing fairly well though - today was a thick and creamy yoghurt, cheese omelette, and a dinner every child would be jealous of...... chocolate pudding with chocolate sauce. My poor children had to suffer eating a healthy savoury meal whilst watching their Dad eat that (illness can be so cruel to those around you!).

Did feel bad at the weekend (well I laughed really!!). Went for a walk to the shops. It was too far for Waffle to go as he's only allowed 5 mins walk for the next few days. Poor Michael was huffing and puffing as it was a real stretch on his energy, when we bumped into someone we knew. She asked where the dog was, and of course how Michael was. I explained that it was too far for Waffle to walk and she looked at Michael and commented 'but what about you?'. So now people think I care more about the dog than my husband. All I can say is that my husband is a much better patient and whereas he hardly every moans and generally always puts on a brave face, the pathetic dog has only just started to put his bad leg on the ground (over a week after the op, whereas most dogs will do so the day after the op), whimpers when we had to pull the plaster off, pulled half his stitches out and then lifts up his leg for attention when anybody walks into the house just for a bit of sympathy. Maybe that's Michael's mistake - he should learn a thing or two from Waffle and then maybe I won't 'force' him to take such long walks.

This week's a really busy one and I did wake up this morning trying to calculate when my next lie-in would be. It's so far away, I gave up in the end. Lauren's show starts this Wednesday and as I have a Chaperone's license (don't even ask why), I offered to help. Therefore I'm out every night this week from tomorrow, and then at the weekend we have very dear friends' son's Bar Mitzvah. Shame of it is, Michael can't see Lauren in the show or join us in the weekend celebrations. Such a shame that he'll be on his own on Sunday evening whilst we're all partying - unfortunately there's going to be quite a few of those occasions over the next few months.

As tired as I am thinking about the week ahead, I'm more drained thinking about how Lauren is going to cope and how I'll deal with her tiredness. One side of it is that she's having a great experience but, on the other hand, I know she's not going to get to bed before 10.45 one night this week. She had a Bat Mitzvah on Saturday evening and then rehearsal yesterday and without going into too much detail, by the time she fell asleep last night, I was hoping Michael had a secret stash of valium that I could take to calm my nerves. Michael's health problems have, naturally, caused me hours of worry but 12 year old daughters can most certainly quadruple any mother's stress levels. So please excuse me if you do happen to see me over the next week looking stressed and grumpy and perhaps with a sore throat (too much shouting!!) - be assured that it's nothing to do with my husband's health but the life of a teenager!!

Hoping to have some positive news to report on Wednesday, and most certainly that it's something that helps to make Michael feel better, and happier.

xx

Tuesday 10th January 2012

No blog in 5 days you may say. To be honest, now that Michael's home and blogging himself, I'm not sure what to say! I'd love to be able to tell you life's returned to normal but, if you've been reading http://www.beingapatient.blogspot.com/ you know that's far from the truth.

There was me faithfully blogging every day. Sometimes, 5 times a day, with so much to tell you. Now - I really can't believe anyone would be interested in our daily life. It's one thing Michael telling you all the his 'personal' details of how he's getting on and his daily rituals and but does anyone really want to hear what I'm getting up to. Life is mundane at the moment. Don't get me wrong - that's not a bad thing (not that fabulous either). It's just a recovery thing I guess. In a way we're both waiting for the time when Michael feels better (perhaps feels as good as he now looks - we're not talking drop dead gorgeous or anything - just healthy!!) and we're not constantly monitoring inputs/outputs/food tolerance, etc.

I'm constantly thinking of what food I can encourage Michael with. There are times when he's more willing than others. Although I have just read that he didn't have breakfast yesterday as I was out - he really shouldn't have admitted that one. I'll be on the lookout now. But seriously - there's so many worries on my mind. I want him to eat as that's part of his recovery; eating often makes him feel sick so I feel guilty that I've pushed food on him; when he has eaten and isn't sick there's a huge sense of relief that the stomach must be working as the food has stayed down; I want him to eat more so that he can get off this awful liquid feed going into his intestine (which we now think is now the cause of terrible discomfort and bloatedness) - once he's off that he can have one more tube removed from his tummy. It's hard knowing that it's best to take things slowly but really wanting to move things along.

Michael's definitely doing more at home - emptying the dishwasher, offering to iron!!, taking the recuperating dog for his 5 minute walk round the block. He does obviously get very tired but I am encouraging him to do a little more each day - you know, one more walk - a little longer each time; take the washing out of the machine. He has been given the all clear to drive, although we've both agreed he will only do so if he absolutely needs to - obviously it's no good getting behind the wheel when he's in pain or just feeling rough and can't concentrate. On the otherhand, sometimes doing something takes your mind off how you feel. Everything's a predicament - try and carry on as normal even though you're feeling lousy - or sit and relax until you feel better. Much easier when you know in a few days you'll be up and raring to go. So much harder when you know this is not a short term thing and we could be having the same discussion for months.

So much for not having anything to blog about!! Just taking a pause to shower and get myself together. And that's another thing - it's 9.14am and I'm still not dressed. The last couple of days have been slow starters. I've been up with the kids but then seem to potter around before actually getting going - think I'll have to kick myself out of that routine. Be back soon...............

Not so soon - it's now 10.40 pm and another day as flown past. Not quite sure what I achieved. Before getting dressed, Michael had a bad start to the morning, taking ages to get himself sorted and my nursing skills were needed (perhaps actually more of a care assistant role when I think about it). Someone asked me today how the two of us were coping together - in other words were we ready to murder each other. As mad as Michael, and the situation, often drives me, I can honestly say that murder is not yet on my mind (please note the 'yet'!!).

An old friend came round to visit Michael today - someone we hadn't seen for many years. Amazing how illness (with the help of facebook) brings people back together. After a gourmet lunch of cheese omelette we ventured out to Harlequin. Not very exciting I hear you say but I needed to return some items (I'm sure I return more than I purchase - how does that work out?) and thought it would do Michael good just to get out of the house. He managed two shops and then I left him in a nice quiet corner of JL coffee shop, reading the paper, while I finished off.

Back home, ready for the kids return and then the usual chauffeuring duties, supper, meeting at school, blog and bed. Meanwhile, Michael spent the remainder of the afternoon on his computer and phone. Can someone be addicted to twitter? If he's not tweeting, he's figuring out how to get his blog higher up the rankings on google. Perhaps I should introduce him to the Wii, just to give him a bit of technology variety. It's one thing when the kids are immersed in their phones, but when it's a grown man!!

So now you know why I haven't blogged. Does anyone really want to hear all of this? Hope you're not too jealous of all the excitement :)

Night xx

Thursday 5th January

Time taken out today on patient no. 1 and took patient no 2 - Waffle - back to the Vet. Took my mind of Michael whilst waiting for the Vet to call and give us the prognosis of the xray. Another cruciate knee ligament op. Our poor doggy, who has, 13 weeks later, just fully got over the last operation is back having major surgery. It's a shame but much easier with the dog having to have further surgery!! He'll be back home tomorrow and whereas I had to pass all his treatment over to my sis and brother-in-law last time, it'll be down to us. I reckon if Michael helps him, Waffle may reciprocate!!

So how's Michael? I'm sure his blog says it all - every day is hard and, at the moment, every day we find something else to worry about. We're back at Oxford tomorrow as the Surgeon has requested to see us - nothing to worry about (I hope) but Michael sent him some pictures of his stoma as he had a concern, and he'd like to check things out. Time to personally ask all those questions as well. Today's 'problem' is that Michael's neck hurts - in true wife style, I prodded in order to give my diagnosis. I think maybe it's his glands (please don't call me instead of NHS Direct!!!) but we'll obviously get them to check this out tomorrow.

Michael's had his feed on all day today. The Nutritionist (I believe Michael calls her a dietician - is there a difference?) suggested this to see if it affects his output at all. It did help him to sleep better last night as he didn't have to get up as much during the night. Just means he's obviously got to carry the feed around all day - for the first time he used the little bag it comes with (not that he actually ventured out the house because of the awful weather) and typically we couldn't figure it out. We both had a lesson how to put the feed in the bag and attach everything just before Michael left hospital the first time. We called a helpline and, what an amazing service, someone from the Company that supplies the feed, came round at 1.00pm. And, we weren't as stupid as we thought - they'd forgotten to include a vital piece of the equipment. All now sorted. I'm just happy that Michael will get another decent night sleep. Don't get me wrong - doesn't affect me at all. I'm such a deep sleeper - Michael could be dancing on the bed (what a sight) all night, and I still wouldn't wake. Just think it's so important for him to sleep well, especially now that he doesn't really have a nap in the day. Sounds like a conversation I would have had when the kids were small :)

So my day tomorrow is planned. Well it was planned and has now been rearranged - off to Oxford. If it's as windy as today, we'll take my car - not sure Michael's little car wouldn't get blown off the road. Hope we come back smiling. Will keep you posted.

xx

Tuesday evening: 3 January 2012

First blog of the New Year. I realise that Michael has now taken over on the blogging front but he is the one who can truly explain what's going on in this very long recovery period.

The kids went back to school today and there was me thinking 'back to normal' when actually I'm not even sure what normal is. Before they broke up for the holidays, normal was flying up and down the motorway to visit Michael in Oxford. Prior to that, it was obviously Michael being at home, not particularly well, with little energy. Now? Well Michael's at home, not feeling particularly well, with a little more energy. So how have we progressed?

I know that's an awful thing to say, but it does sort of feel like the last 12 weeks have come and gone and we're back to where we were. True to say, Michael does now not need his afternoon sleep, although does have the occasional cat-nap. He is eating more (a little, still under duress) but is still occasionally being sick. Still got tummy aches and mostly always feels pretty yuck. Neither of us have ever asked the question 'was it worth it' but I don't think either of us really understood how difficult the recuperation at home would be.

Michael is only the 11th patient at Oxford and everything from the actual operation to the preliminary tests is all quite new. We never realised that there would not be daily progress that we could easily monitor. It's more like 2 steps forward, 4 steps back. People kindly ask how Michael is progressing - it would be so much easier to say he's doing really well and I can see the improvement but it most certainly is not that simple. I feel a bit pathetic when I say he's just ok and nothing really to report. How can there be nothing to report? I guess he had tuna mayo today - that's news isn't it??

We were at Oxford today and had a whole list of questions for the Surgeon. Unfortunately (and frustratingly) we didn't get to see him. Michael had been told last week that he would be seeing him and felt quite relieved that after about 4 weeks he was going to be able to go through all his questions - the Team are great but I think it's quite understandable that Michael holds him in such high regard. We were both disappointed but he won't escape that easily - Michael has emailed him our list of questions. All we found out was that last week's biopsy was 'fine' - does that mean: hasn't got worse; has got worse but nothing to worry about; it's got better??? Guess we'll find out more in two weeks when we go back again and Michael has another scope.

From the kids point of view, things are going great. You may know that Nathan was blogging (not very often). I asked him at the weekend if he was going to blog and he said he didn't have anything to say. From his point of view, Dad's home and he doesn't have to visit him in hospital. He's been busy seeing his friends over the holidays and we've been out as a family (even though Michael hasn't had the energy to last the whole day). So everything is relatively 'normal' (sorry I keep using that word) in their lives. How sad is that - I'm pulling my hair out at the monotony of our lives over the last 2 years, and they see it as the norm.

I've had more time to think with Michael being at home. I've also been loading all our photos on the computer, and reminiscing at the same time. When I think back to Aaron's Bar Mitzvah in March 2009, that was most probably the last time Michael was in fairly decent health. He was training hard then for his New York bike ride in the June of that year, and what an achievement that was, but then it was all downhill (ha ha!). We both knew something was up fairly early on in the year, but it was the usual treatment of steriods, etc before there was a clear picture of the problem - things weren't right - his Consultant was being pretty useless and we were waiting for a referral to UCH. I think we eventually saw UCH after the summer holidays and they tried a new drug (by way of infusion) but the damage was already done (Crohn's had attacked again and the intestine was blocked). And that's what led us to the first op in February 2009, to where we are now. So now I've just depressed myself thinking that it's nearly 3 years of illness............

Onwards and upwards - I'm not depressed really. I do have moments but now's not one of them. Perhaps I can see the positives - Michael's spending a lot more time on his computer; is addicted to twitter and is constantly attached to his blackberry (had to tell him last week to leave the stupid phone downstairs at bed time!). So I guess things are improving.

Night xx