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