WARNING: very very long, and very personal post. If you’re just here for the usual frog humour, you might want to skip this one…
So after a few weeks of intensive tests in the Saint Louis hospital in Paris, I have my diagnosis; it’s malignant cancer. The diagnostic came yesterday on Wednesday afternoon. So far, I’m not scared. After so months of being ill, of watching the weight drop off (I’ve gone down from 74 kilograms to 58, and my legs are little ginger twiglets), I’m not as shocked as if this had been completely out of the blue.
Of course, when they actually told me, it was numbing. I was really expecting some kind of auto-immune system problem, nothing too serious, maybe sorted out with a good few months of medication. The Big C was really a step beyond what I’d been imagining.
Things that that frighten me are:
- The cancer is too widespread for surgery or radiotherapy, so it has to be chemotherapy (should I have pushed for a chest x-ray sooner? Should I have kept working as long as I did? Have I pushed myself too far before seeking serious medical help?)
- The general recovery rates are low for this type of cancer. But: everyone is an individual, they say, every case is different, so these figures aren’t really too indicative.
- They haven’t found the primary tumor yet. I have a colonoscopy and a gastroscopy (they may be the right words) tomorrow to try and find where the problem started. If they don’t find it, they may find it later from cancer “markers” that show up in blood tests – or there may no longer be one. This is not necessarily a bad thing, but it makes selecting the chemotherapy drugs a little more hit-and-miss to begin with. (I paraphrase, of course). This makes The Where Decision (see later) a bit harder to make. Whatever the outcome – the first dose of chemo comes in straight after that – so I guess tomorrow afternoon.
- As my kidneys are still not quite running at 100% following their infection, this may slightly restrict the choice of chemo drugs selected. The profs don’t seem enormously worried about this, but they’d prefer to be able to use their drugs of choice – and me too, of course. Still – this is likely to be just for the first dose anyway.
- Apparently some individuals respond better to chemotherapy than others, and I’ll have no idea whether I’ll be a good responder or not until we get going. I want to be a good responder, and I guess there’s no reason why I shouldn’t be. I will be a good responder!
Things that give me hope:
- I’m young, reasonably fit, and have got loads of support from friends and family, so I (and the docs) reckon my chances are as good as anyone’s for a full recovery. Whenever I’ve taken any kind of drug in the past, from paracetomol up, they always seem to have quite a strong impact on me. I’m not so sure if that’s good or bad, but I’m choosing to interprete that as A Good Thing. Though I guess it may also mean the chemo makes me sick as a dog – but a small price to pay, all in, if it works.
- So far, I’ve been staying in pretty good spirits. I have no idea if this is just down to a kind of delayed stress reaction, and at some point in the next few days I’m going to break down and scream “OMG I’VE GOT CANCER AAAAARGH!!1!1” – but I’m putting it down more to being surrounded by my incredibly supportive family, friends, and by the indefatigable Emilie. I have no idea where everyone is getting all their strength from, but you’re all overwhelmingly positive, and it’s encouraging me to be the same. I’m so glad you are. You say “you will get through this”, and really, I’m hard pressed not to believe it.
- The old “one day at a time” cliché actually does seem to work. I get through the day, and then there’s another one right after. Surprise!
- Chemotherapy does at least sometimes work, and people get better. They wouldn’t do it if it was competely useless, right? Right! Someone my mum worked with made a full recovery. Tim from fellow Brighton-band Treadstone, who not only recovered while continuing to play with the band, he’s still making music, and was (last time I saw him) working behing the bar at The Open House. (He took the booking for me and Emilie’s Brighton leaving party almost a year ago. Brighton is such a small world.) Matt met a guy who was in the last stages of incurable stomach cancer, but was still hanging round a campfire in Amsterdam six years later. I like these stories.
- I’m going slowly bald anyway, so the hair loss doesn’t bother me overmuch. I have a fine selection of hats for all temperatures.
The Where Decision
I’ve got quite a big decision to make in the coming weeks or maybe months. But first, a bit of background. Before being hospitalised, I’d given my three-months notice for my mobile-phone developing job, and had just found another at a search-engine company in Paris through Steve. It looked like an absolute cracker – but it’s looking unlikely I’ll be able to take it now, though I can always try and reapply later.
The hospital I’m in here in Paris has one of the best Oncology wards in the country, and the level of care seems excellent. But if I stay, I’ll need someone to look after me the first few days (or maybe more) after each dose of chemo finishes. Emilie’s just started an internship at a publishing company, which she can give up to nurse me – but I’m not sure what we’re going to do for money when my job ends in early November. The chemo will last for at least 6 months, probably more, and I’ll be “very unlikely” to have a normal job in this time – a week or two of each month will be taken up with the therapy and recovering from it afterwards. So if Emilie won’t have a job, and I’m not going to be pulling in much – it’s a tricky one.
An option is for both Emilie and I to give up our Paris flat, and move back to England with my parents in Charlbury. We can stay rent-free, and my parents, being retired, are happy to provide nursing care – leaving Emilie free to look for a job in Oxford or maybe even London. Of course, we don’t want to leave Paris, or our nice new flat (we moved a couple of weeks back) – but maybe more importantly is I’m not sure how wise it is to transfer all my records and case history from one country to another mid-treatment. I know how difficult knowledge transfer is, even in the same language. Here in Paris, my Oncology department can wander down the hall and chat to the Internal Medicine department where I’ve been for the past two weeks, any time they want to discuss something that maybe isn’t clear in my dossier. This would be a little more difficult to do from Oxford.
On the other hand, the Churchill Hospital in Oxford, close to my parents, has a very good reputation too – and despite my French having improved beyond my wildest dreams in the last year (though unfortunately I still can’t conjugate basic verbs properly), I would find things easier in an English-speaking hospital. And my folks’ house is big enough to accomodate me and Emilie without too much toe-treading. I think it could work.
Also, being in England would perhaps make picking up little bits of work easier – if I’m capable. Previous employer Magpie have already extremely generously offered to throw some stuff my way. So I could get working, and earning, in between doses of nasty chemicals – and maybe get some sort of feeling of normality returning.
Another option is for my folks, who are currently staying with us here in Paris and visiting me every day in hospital, to stay here on a longer-term basis – or Eurostar over during the week when it’s necessary to take care of me. But that doesn’t really sort out the looming employment/rent problems – and also our flat here in Paris is great for two but very cramped for four. And it’s not easy for my folks, who don’t speak French, to be out here in Paris for extended periods of time. They’ve got their responsibilities in England, too.
So, I don’t know; tricky decision. Especially if no primary tumor is found – this means the chemo cocktail is necessarily going to be more lucky-dip while they try and figure out what works and what doesn’t. And I’m not so sure it’s a good idea to interrupt that kind of partly-intuitive process – even if these procedures are (we’re told) fairly standard across countries.
Hmm. I’m still working out whether this is a smart idea to be posting out on the interwebs for all potential future employers (mortage providers, life insurers, etc.) to read – but what the hell. Full disclosure and honesty never hurt anyone, right? And if I do end up back in England, it’s going to be a great opportunity to see old friends. I’ll be really sad very leave Caro and Ari and Marie and Roman and the guys from my new band, Ben and Jerémié – but it’ll be a good excuse to come back and visit.
Finally, thank you untold times to everyone who’s texted and called and emailed. It really does make an enormous difference. I’m sorry if I’m sometimes a bit tired to talk properly, but I guess it’s par for the course. When I’ve got some energy back, and am back home, you won’t be able to keep me off the phone and chat and email.
Signing off, now – I’m posting this from the médiathèque’s lone internet computer, and am already almost twenty minutes over time. I didn’t even need to try my planned sympathy queue-jump (no, I am no longer british) with wheelchair and listless air, to be followed by marvelling at my miraculous recovery as my programmer fingers fly – mainly to the backspace key. Damn AZERTY keyboards.
Lots and lots of love to everybody, and thank you all for being here.