It’s really sweet to be home after 6 weeks in hospital for chemo treatment – and a lung infection as complication.
My main problem now is that I am really low on energy, so this will have to be a short post. Basically, I will spend another three weeks at home to recover a bit and build some strength. Then I will go back to the hospital for my stem cell transplant.
Hope you’re all fine – and thanks for you messages of support!
Since 10 days, I am back in the hospital, more or less as scheduled.
An ‘interesting’ development is that I’ve lost most fine grained perception and control in my hands and legs. That’s apparently not that exceptional. It was a bit worrisome at some point, because I had experienced this numbness for months at the very top of my toes and fingers. And then, about two weeks ago, it suddenly progressed very fast, especially upwards from my legs, to the extent that I worried I would be more or less paralysed a few days later.
Since then, the situation is pretty stable. It feels like my lower legs and upper fingers are sleeping. But it’s not getting worse. In fact, it may be slowly getting better.
I mentioned that this is an ‘interesting’ experience, because I more or less had to learn again quite a few things I’ve been able to do for 45 or 50 years, like for instance how to walk. I have lost most sensory feedback from my lower legs, and now steer my movements much more on sight. In physiotherapy, in some situations, I just fall over when I close my eyes. (Don’t worry: I only do those exercises when there’s a professional physiotherapist right next to me.) Much of my treatment for this side effect of my chemo treatment centers around compensating the old way (sensory feedback) of doing things with a new way of doing the same (focus visually on where my feet should land). I like the fact that human bodies have that flexibility.
My hand problems are also ‘interesting’: it now takes me about 7 minutes to button my shirt. And I can no longer write, or, when I do, nobody can read it – not even me. Thank God for keyboards! But no worries, I look forward to going back to primary school and learning to write my name.
Apart from this ‘interesting’ experience, I’m doing kind of fine. I just finished 6 days of intensive chemo. The idea is that my blood will deteriorate in the coming days, because a lot of red and white blood cells are destroyed as a kind of ‘collateral damage’ in this chemo war I’m fighting. When the levels of these cells are back to somewhere near normal, probably in 2-3 weeks from now, I’m allowed to go back home. About three weeks later, I’ll be back in the hospital for my final (I hope) session with the stem cell transplant.
I do hope you’re having plenty of interesting experiences too, though I also hope they involve less “let’s re-learn how to walk”!
I’m almost clean: last Friday, I had CT scan – turns out that at least 95% of the Bad Tumors are gone. It’s unclear whether the remaining 5% is still active or not. I was pretty pleased with the news, close to the best we could get. If this is a war I’m engaged in (and it sure does feel that way sometimes), then this is a battle won.
But the war isn’t finished. The trick is that we need to move fast, so that the Bad Tumors don’t have time to come back. But we need to proceed slowly enough, so that I can recover in between treatments. That’s why I’ll be back in the hospital next Wednesday, for a few days of chemo treatment with Methotrexate. Then I’ll spend another week at home and then three weeks in hospital for more intensive chemo. Then a week or two at home and then another three weeks in hospital with the stem cell transplant.
It’s a schedule that has its advantages: it looks likely that the main treatment will be over before the end-of-year period!
Oh, and I’m “rather exhausted”. What can I say? I’m a bit more tired than just tired. I sleep a lot, read a little (just finished a Stalin biography – the older I get, the more my reading habits resemble my father’s…) and I check my email and social media from time to time, where your messages of support keep doing just that: supporting me. Thank you so much!
After 20 days in the hospital, I arrived home yesterday. That was one long stretch of hospital for me – I know, it’s much worse for others…
On the physical side, this was a bit hard, but not that hard. I had eight doses of Asparaginase, a bit of other chemo and two punctures of my bone and two of my spinal cord. Sounds worse than it is. Really: the university hospital has great staff that works very gently to get you through the procedures.
It’s the psychological side that I found a bit harder to cope with: I was confined to my room for 20 days and in rather a strict way – no leaving the room at all for most of the time. Sounds easier than it is. Sometimes, it really felt like being locked up in a cell.
I’ve actually completely internalised some of the constraints: I was linked to a catheter in the hospital, dragging it with me from bed to toilet to water bassin to bed etc. Since yesterday, I’m disconnected but I still reach out for the device when I get up from a chair.
And I’m tired. Quite tired.
But I’m home. Can’t begin to tell you how much that means for me…
I really appreciate being in a civilised environment. I guess it’s hard to define what that means. It involves people speaking softly, holding the door for someone arriving behind you, forming a recognisable queue when there’s queueing involved, actually looking at someone when you talk to her, … Yes, I’d even add getting up to present your chair to someone who may need it more.
Luckily, I meet a lot of civilised people in the hospital these days. But a memorable highlight of what it means to be civilised we encountered during our recent visit to London. I like the way that most of the major London musea are completely free to walk into. It takes about two minutes to walk up to the British Museum and be face to face with the Rosetta Stone. How cool is that? This is maybe one of the 10 most recognisable cultural artefacts of all of human history. They could probably charge 10 Pounds, have long queues and notices of what you’re not allowed to do and then hide the object somewhere deep down in the museum. But nope, you just walk in, take a left, and there it is in all its glory. There’s a lot of other glorious stuff in that building. (There can be a bit of a crowd at the entrance, and not everybody in the crowd is all that … civilised, but still.)
And it gets better: you know, in the Victoria and Albert museum, they have a very varied collection of all kinds of wonderful stuff, including the most wonderful stuff that exists: the original drawings by E.H. Shepard for the Winnie-The-Pooh books. (No. Not the Disney mutilation. The Real Stuff.) I don’t remember how I know this because the drawings are not on display. But I remembered that we had seen the drawings on an earlier visit, maybe 20 years ago…
And that’s the thing: when you enter the museum, you can just ask at the reception to see the drawings. They give you a telephone number you can ring to make an appointment. And then a nice lady takes you to a private study room – via a long tour behind the scenes, all the longer because I was in a wheelchair and we had to pass through many corridors and offices, take several elevators, cross from one wing of the building to another – sort of helped building up the expectation…
Nobody asks you what you want to do with the drawings. Nobody asks you to fill in a form. You don’t need a ‘permission’. You don’t need to show identification. The lady just comes to pick you up at the entrance and takes you to this nice private study room. And then someone brings you boxes with the drawings and you’re free to look at them for as long as you like, take pictures, whatever. No pressure, just a nice opportunity to enjoy a highlight of Western culture, at your own pace, nice and quietly.
This is priceless material – actually, a single drawing is apparently worth about 200.000 pound in an auction. Nobody told us we weren’t supposed to write on the drawings or fold them or take them with us. Because the assumption was that we were civilised people and that this is not what civilised people do. We didn’t know whether photos were OK, so we asked.
That, for me, is so much the core of what A Good Life is all about: we respect each other, and the valuable objects around us. And when in doubt, we ask. Quietly, because you may find yourself in a small study room, somewhere in the innards of a world class museum, surrounded by … civilisation.
So, here’s to all you civilised people out there (like the people who took us to the reading room and brought us the drawings from the archive): many thanks for making my life so much more enjoyable.
And you know what little Piglet tells his friends on the drawing? “It’s really hard to be brave.” I agree with that. We all have a little Piglet inside of us…
After my better plan, I now have a newer, bester plan ;-) …
Yesterday, I had a PET-CT scan and it is clear that I have too much tumor mass to go into my allogeneic stem cell transplant next week, as originally planned. So, I will start a 4 week hospital stay tomorrow, focusing on chemo treatment for my tumors.
Since my diagnosis changed to T-ALL about 6 weeks ago, there are some relevant chemo treatments for my condition that I haven’t had yet, notably asparaginase and methotrexate. I’ll have those in the coming weeks, which means that my resistance to infections will be severely compromised. I’ll also need some detailed medical follow-up. In short, I’ll spend the next 4 weeks in an isolation room.
If the chemo does its job, then my tumor mass should be seriously reduced or even completely gone. Then I should be able to have my stem cell transplant in about a month or so, which will involve another 4 week hospital stay, again in isolation.
In short, the current plan is to enter the hospital tomorrow for 4 weeks of chemo treatment, then spend a week at home to recover and then spend another 4 weeks in hospital, for my stem cell transplant.
Will probably not be the most fun period of my life, but I’ve spend weeks in an isolation room before. Gives you lots of time to read and work, which I do enjoy. Really. And there is a serious chance that this treatment will actually save my life – which is kind of nice.
Apologies if my health bulletin isn’t the most interesting kind of news. In any case, all in all, I’m rather optimistic and hopeful. Hope you’re doing fine too!
I don’t feel my work is done, and I’m not ready to rest, but I am happy that Oliver Sacks is finding peace.
And now, weak, short of breath, my once-firm muscles melted away by cancer, I find my thoughts, increasingly, not on the supernatural or spiritual, but on what is meant by living a good and worthwhile life — achieving a sense of peace within oneself. I find my thoughts drifting to the Sabbath, the day of rest, the seventh day of the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest.
We’re enjoying a few days of Family Holidays before I enter the hospital for tests and my stem cell transplant. Time with the family rather than with medical staff feels a bit like Sabbath, a tradition I’ve always admired…