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…
A great technique is “backwards planning”: you start with the result on a certain date in the future and then plan backwards towards the present from there. So, that’s kind of what we did for my treatment.
I will have my allogeneic stem cell transplant on September 2. (Thank you, anonymous donor!) That means that I will enter the hospital on Monday 24 August, for total body irradiation and intensive chemotherapy (endoxan). Yes, we really want to go after the Bad Cancer Cells with everything we have!
That in turn means that I will have a plethora of tests and preparations on 19-21 August – six interventions in total, but I do get to go home in the evening and spend the weekend at home too.
And that leaves us with a bit of time until then! I still need to get Yet Another Blood Check next Tuesday, but it looks like we will have a bit of time for a Family Holiday after all. I just booked us into a hotel in Trier, Germany (close enough to get back home easily if necessary, just in case).
The original plan was to spend much more time, with our Friends in Umbria, but hey, sometimes you need to abandon a plan for a better plan!
And then there is the after-2-September period. I don’t think about it much. I hope to be back on my feet quickly. But if not, then not. I mostly hope to get back on my feet for good. So we can visit our friends in Umbria for long periods, and many years to come…
Sometimes, I have this vision where I see fear in the eyes of everybody I encounter. When that happens, everybody looks distressed and worried to me. This vision never lasts very long, but the effect always stays with me for much longer: we’re all vulnerable, and we’re all afraid from time to time…
Some fears are a bit silly of course: for instance, I’m somewhat afraid of spiders (probably for sound evolutionary reasons that are really not all that relevant anymore for someone living in a context like mine). Even silly fears can be quite disruptive: I once froze, somewhere very high in one of the towers of the Sagrada Familia because of a fear of heights. Froze. Literally. Couldn’t move. Panicked. Not funny. Took me ages to get to the exit. I still feel uncomfortable when I think of the experience.
Some fears are a bit less silly. Last week, we were in London and saw some Francis Bacon paintings at Tate Britain. His art touches me in rather an extreme way: a Bacon painting always scares me. Or confronts me with a fear inside of me that I try to stay on top of. Maybe that is the same thing. I know of no other painters who have that effect on me – with the possible exception of some Hieronymus Bosch paintings. This kind of fear is less silly than a fear of spiders, I think, because it relates to something existential, something related to what it means to be human.
Most of us have a fear of dying, I guess. I know I do – a bit more consciously now that I’m a Patient with a Serious Disease. Yet, it is difficult to confront or discuss that kind of fear: I always feel like I’m behaving hysterically when I mention it, as if I want to draw attention to myself. Most of the time, mentioning fear of dying kills a conversation anyway, and most people react with a “don’t give up, you can beat this disease” type of message. Which is nice, but admitting fear doesn’t mean giving up!
To the contrary, I actually think it’s important to recognise that fear, and to try and live with it in a conscious way. Otherwise, I have the feeling that I’m fooling myself, pretending to live in a Disneyland World where all will always be allright in the end and avoiding the Tough Issues.
I actually had very similar ideas about fear before I became a Patient with a Serious Disease – ever since I realised I would eventually die. I remember exactly when that hit me: I was twelve, sitting in a bus home from school, when the bus turned a corner… A story for some other time.
Maybe, if you can live without being hysterical about your deepest fears and without pretending they aren’t there, maybe then fear can become your best friend…
PS. Fear is also hard to write about, as I just experienced. I’ll write about something positive next time. Promise.