Everything's Perfectly Normal

Date October 16, 2017 08:40

Another day, another clinic appointment out of the way, and I thought I'd let you know how the lovely shiny family kidney's doing ....

The best news I could possibly relate is the news I'm about to give: my blood results this morning are, in the words of my absurdly dashing surgeon, 'excellent'. This is the best use of the word 'excellent' I've heard since the last time he used it (The occasion is also laced with relief. Last week there was a dip in one of my kidney function indicators and some dread entered the picture for a few days. But it turns out some minor ups and downs are expected (the rollercoaster continues!). So now I'm happier.

If a bit sore. As my brother points out, the favourite line wheeled out by medics hearing that something still hurts is, 'this is perfectly normal'. In fact it's become something of an in-joke. "My legs don't work and I haven't been to the toilet since June". Perfectly normal. "I can't breath, etc" - Perfectly normal. "I think I've died". Perfectly .... It's tempting to test them out just to get a feel for the range of normality we're dealing with here.

I was wheeled into unknown territory again on Monday morning, when they put me under for a hour and removed my dialysis line (which had been plumbed into my neck for 5 months) and a stent holding open the ureter of Paul's kidney where it's been attached to my bladder. They go in through a part of you you'd rather they didn't. All the fun of the fair! I'd like to say the general anaesthetic was routine, but I begged them for it, leaving no trace of pride whatsoever. And now, a few days later, it still hurts, a bit. But I'm not worried in the least, because it is almost certainly Perfectly Normal.

But the overall trend, at this point in time, is solidly positive.

I must never lose sight of what has changed in my life - I have a fully operational kidney where a few months ago I was dangerously ill and spent an average of 16 hours in a dialysis chair every week, and the rest of my time thinking about it and the fact that doing anything else with those days, or much with the days around them, was impossible. My brother, and the team of bafflingly coolheaded people who operated on us, have made this possible. I have been given my freedom. (And a lot of pills to take - you can't have everything!).

Paul is back at work now, and more his old self, after several weeks of limping around his house in tracky bottoms. The whole thing was really tough on him - I don't think they warn donors about how much it's going to take out of them, for obvious reasons (run away!), and the blow to a previously healthy person is something of a blind-sider. I won't go into details, but nothing below the navel feels good for some time after they cut you open and remove a substantial part of your inner workings. I felt bad for him, almost as bad as i felt for myself in those first weeks, as I mentioned before. I also remember saying something about 'needing to break eggs to make an omelette'. Well, break some we certainly did.

But, back to that omelette! My twice weekly clinic sessions at the Royal Free in Hampstead will soon become once weekly, and I'll be able to think about going home to the boat. I've been staying with my mum in Crouch End for the last 6 weeks, and we're still talking, after some periods of not - it's been a challenge for two independent people, under pressure, to share a small space in scary, testing and uncharted circumstances. When I'm not being a moody git I remember to feel grateful. It pushed mum like nothing else to have both her sons in an operating theatre at once.

The boat and the river seemed a light year away when i was in hospital, and during the first weeks at mum's. I could not believe, when i was sleepless in a strange, distress-filled ward, that the experience belonged to the same person, the same life. For a time I felt utterly alone. Who will shine the light for you, when you feel this lost? Because I could not. It was utterly humbling and I wonder if I will do better, another time. No contact from the outside helped. Years of meditation (admittedly ill-disciplined) did not seem to count for much. Or did they ultimately, finally, see me through, and out of those exit doors into the world?

Two months later, life is thankfully shifting. I think about work again, (and looming penury), so my current flurry of activity must bear fruit if I'm to stay afloat (no pun inteneded). I can almost imagine home again, and remember how I filled my days on 'Odin'.  How I've missed that, and my happy solitude.

Back in Suffolk the leaves will be turning, the swallows will be gone and dew will be settling on Ferry Quay. The river is colder now and night mists no doubt hang low in the harbour. I wasn't there to see the harvest moon. But I will be there to take on whatever winter throws, while we ride the relentless tides and scattering winds.

They are reassuringly, ultimately nothing personal.

Posted October 16, 2017 08:40


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 In the summer of 2016, Mark Tunnicliffe threw his life to the wind and moved 100 miles to a boat on the Deben estuary in Suffolk. He now collects buckets, and shouts at birds. Can his dreams stay afloat?  

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