Had a lovely afternoon with dear friends today - for a short while it was like everything was 'normal' but then I could see Michael wilting and finding it hard to concentrate (really was nothing to do with the company) and then he started to get very tetchy about getting home to put his feed on. It's quite funny, when he first started with his TPN some 18 months ago, he was quite relaxed about the whole thing; didn't really have a concern as to what time it was started and often used to walk around with it in the mornings as he'd put it on so late the night before (it's on for 14 hours). I used to get quite aggrevated as I couldn't understand why he'd want to walk around with it during the day - I wanted life to be normal and his blue rucksack and tubes were constantly connected.
Thankfully, nowadays he likes it to be on before 7 so that it's off no later than 9 am but meanwhile he's stressing when it gets a bit later - totally irrational (well I think) but then with everything that's going on he's got a good excuse. Guess I'm pretty irrational at times (and may I add - only on rare occasion!!). It's funny (in an unfunny way) but Michael's becoming quite tense and irrational about alot of things. I think that's what keeps him sane, perhaps in control of things. When he's been in hospital I always used to laugh to myself when I left him - his bedside trolley always had to be laid out just so; water glass, tissues, glasses, watch, etc all in a particular order, and then I'd find him moving things a millimetre in a different direction. Only then could he relax. He knew I was sniggering away at him. Now, through all these months and now this eternal waiting, with us both going a bit stir crazy, I've noticed all those little oddities coming back. The bedtime ritual is irritating (Michael - I say this with affection) purely because it's the same every night and I do find myself sniggering again to myself. It's nothing major but it's like clockwork every night and the new thing is checking and rechecking the phone to make sure it's on. All I can say is I know exactly how Michael feels now when I constantly go to bed and 10 mins later go downstairs to check whether I've locked the back door; or go out and then worry that I haven't closed the windows. I should add at this point that I have been known to leave eggs boiling, drive off to Ikea and then come back to a rather smoked filled kitchen and a heavily coughing dog. Guess Michael's just getting his own back.
So many people today asked us if there was any news. If there really is any news, you won't actually be seeing us around. When we do get that call, we're straight off to Oxford. From what I remember from the transplant coordinator (and there really was loads to take in), when the calls does come, they check that Michael's feeling well, and then it's off to Oxford as quickly as possible for a very long wait before we know if the donor organ is viable. I'm actually really dreading that wait - all very well taking the knitting, the portable video player and a book but I can't imagine that either of us is going to be up to doing anything (although I have now got a vision of Michael knitting!!!!!!). Not even sure if we'll be up to talking - what could we possible talk to each other about that would cheer us up??
As the days goes on, I've noticed that it's Nathan that's asking more and more questions as to when/where, etc. Wanted to know this evening what would happen if we got the call when he's at the stables tomorrow. I did say that I would pick him up before we went but then as the words came out I realised we may not have time. In my heart I'd obviously want them to be home when we do have to go, so we can give them a kiss and cuddle and send them off to some lovely friends. Time will tell whether it falls into place so neatly.
Yet again another day is over and another night awaits us. It would have been so much easier if we hadn't been told that calls more often come in the middle of the night.
As always - will keep you posted xx
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