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
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