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.