So I’ve been intermittently texting dribs and drabs to people, but finally some proper updates, now I’ve got myself down to the right networked PC at the right time on the right day… and sorry for the suspense. Spoiler: in general it’s good 
(Written Sunday 23rd September 2007)
Friday afternoon, after coming round from my various ‘oscopies, I had some positive news. The docs found that the tumour originated in my stomach, so they’ve a much better idea what they’re up against. There is a protocol, and a tried ‘n’ trusted chemo mixture they can start with. (Somehow linking back to this blog’s original theme, the protocol is a Franco-British collaboration; originally created in the UK, but tweaked and improved by the head of the Oncology ward I’m in now…)
This is not to say I’m anywhere near out of the woods, but it sounds to me like a good-sized breadcrumb.
So they started the chemo Friday night. My particular treatment seems to consist of an elephant-sized needle of terrifyingly bright purple liquid that gets injected very, very, slowly (”so we don’t break the vein”), plus a couple of little intravenous baggies that drip in over a couple of hours. After that it’s all pills, which I’ll continue to take when I go home - which may even be in a couple of days. The idea is to stay in hospital for the first few days, carry on the treatment at home for a couple more weeks, then take a week off. Then the cycle begins again. As it’s my first session, they may keep me in for observation for a bit longer, which is fine by me - I’m really doing little else other than sleeping and, when energy’s up, writing this.
I have to say, though: so far, so good. Words fail me with gratitude for the support, concern, love and well-wishes people have been sending. I’m riding on a huge wave of love, and it’s thanks to everyone who’s been letting me know they’re thinking of me, calling me, sending me messages, that’s getting me through this. I’m a big emotional rattling teacup at the moment, but I genuinely (and yes, probably perversely) feel very, very lucky indeed.
I’m writing this Sunday, but the médiathèque isn’t open til tomorrow, so I won’t be able to post til then. But to all my friends: thank you. You are beyond wonderful.
(Written Sunday 23rd September 2007)
Chemo
While all this is still novel enough to joke about, I’m going to make some light-hearted comments about my personal chemo side-effects. Don’t expect too many more of these in the coming months. Disclaimer: do not try this at home unless under supervision of trained medical staff. YMMV.
Crazy Chemo Side-Effect #1: Very Tingly Left Arm
Probably down to afore-mentioned crazy purple liquid getting injected there. My left arm runs at about 70-80% of normal speed, and feels like it’s always slightly asleep from laying on it for too long. (Mental note: make sure I don’t lay on my left arm when I sleep.) It’s also tingly to the touch, which is fun for about… well, ok, it’s still fun.
Crazy Chemo Side-Effect #2: Sensitivity To Cold
They warned me about this one. Something about sticking platinum in my blood, I think. Abrupt temperature changes are to be avoided, especially sudden contact with very cold things. I’ve discovered this can include:
- Cold water from the tap
- The tap itself
- Metal door handles
- The floor (flip-flops ahoy!)
- The metal bits at the end of my hospital bed
Apparently I am going to need freezer gloves. I don’t know if these are made or provided specially.
Crazy Chemo Side-Effect #3: Don’t Get Bruised
As the chemo tries to kill off the nasty cancerous cells, it apparently also knocks off quite a few of the good ones - hence getting bruised and injured is a bad idea. (Or rather: a worse idea than normal.) So I’m going to have to lay off all the rugby, kick-boxing and croc wrestling for a while. Those of you familiar with my competitive, living-on-the-edge no-fear lifestyle will realise just how much of a blow to me this is.
(Written Monday 24rd September 2007)
There have been ups and downs these last few weeks, and I’m realising how remarkably fortunately I’ve been avoiding the downs. I know they’ll be there, and that there’ll be setbacks, but I’m under good advice - I shouldn’t beat myself up when I do have the shitty days.
I’m by no means a religious person, but I feel strangely blessed. I’ve had so much warm and good feeling, so much love and care and human contact from my friends and family in the last few weeks, that I feel elevated and more… human than I have done for a very long time.
I fear I’m digging this groove a little deep, here, but I’m shocked by the intensity of these emotions. Course it could just be the morphine, but I really don’t think so. The depth and beauty that people I know have revealed to me over the last few days and weeks is truly staggering.
Signing off again before I start reading signs in my Earl Grey. (Tip for French hospital life: the food is definitely a cut above average, but BRING YOUR OWN TEABAGS OR SUFFER.)
(Written Wednesday 26 September 2007)
I slept all through the bibliotheque opening hours yesterdays, so didn’t get to post any of the above - or check my mail. And the place is shut today, so all this posting will have to wait til tomorrow. Damn these 12-month minimum-contract 3G data cards…
Quickest of quick status reports. Things quietly and happily continue to improve, and I’m holding my breath not to jinx anything. My renal functions are apparently normal, meaning my kidneys have recovered, and I no longer have too much calcium in my blood. I may have another small urinary infection, but if so it should be knocked out before it spreads kidney-wards like last time. (Another advantage to being in hospital - regular wee tests!) On the (only slightly) down side, I’m coughing all night, not sleeping, and dozing through the daytime (and missing vital internet connection windows ;), but they’re supposed to be changing the cough medication tonight to try and improve that one. So all either good news, or very minor gripes. I’m still on a constant but low-level oxygen supply, which means I can take a gas cylinder home with me when I do get out. They want to keep me in hospital for a while longer until they’re satisfied that my cough’s improved, that I’m sleeping better, and that I can walk about unaided (at the moment, I’m too tired to give it a serious go), before they send me packing - but while this is of course a little frustrating (mainly, shamefully, as I want an always-on net connection ;), it’s definitely for the best. And taken in context, still an excellent, excellent position to be in.
So still happy, still positive, still revelling in the almighty and astonishing warmth of human friendship, and still failing to conjure up a single cynical thought. I’m spotting the broken record signs - time to turn off. Love to everyone. Words can’t say it.
(Written Thursday 27 September 2007)
Emilie printed the comments page for the last blog entry and brought it in for me yesterday. Being completely emotionally overwhelmed is starting to become my natural state. I’m going to have to start taking some kind of endorphine supplements for that too.
There’s been way too much lag between postings - so much has happened, and improved, since that “Innards” post that I hope you don’t feel your sympathy glands have been overmilked. But bloody hell, hello everyone from everywhere and everywhen!
So today, what’s new… still very tired, and a touch melancholy - drugs not really hitting the stomach pain this morning, and breathing not great. Still - big difference between worrying about achy guts, coughing and feeling tired, and worrying about identification of primary tumors… Occasional adjustment of perspective required. Had a stupid pouting spat yesterday while my family where talking about the delicious cottage pie my dad had cooked earlier, while I was trying to shovel down some salt-free boiled leek mixture - which made me feel about five again. But occasional childish tantrums aside, all still remarkably and breath-holdingly good.
Just wrapping up warm in bed in hospital, and putting off starting my constitutional walks til a little later. Will get downstairs to the net PC this afternoon to post all this if I have to slide there on my skinny little ginger arse. You wait a week for a blog posting, then five come along at once…
Love to you all.
21 responses so far ↓
Joh Hunt // September 27, 2007 at 6:33 pm
I’m fighting an amazing mental picture of you sliding about on your “skinny little ginger arse” to get to the pc. In my head you switch between some kind of wrapped-up-in-bedsheet caterpillar action on fun slippery floors, and sliding on a series of waterslides or normal playground slides, to get to the PC.
Either way my brain now firmly believes you have a very modern type of hospital there that is nothing like Sussex County (apart from the food) and way more fun!
Joh Hunt // September 27, 2007 at 6:35 pm
I’m fighting an amazing mental picture of you sliding about on your “skinny little ginger arse” to get to the pc. In my head you switch between some kind of wrapped-up-in-bedsheet caterpillar action on fun slippery floors, and sliding on a series of waterslides or normal playground slides, to get to the PC.
Either way my brain now firmly believes you have a very modern type of hospital there that is nothing like Sussex County (apart from the food) and way more fun!
RedYeti // September 27, 2007 at 7:39 pm
They inject you with purple stuff? Purple?
Are you kidding?? That’s really cool!
Very, very happy to hear they’ve found the primary tumour - a proper target
Go Joe!!!
Ben Gilmore // September 28, 2007 at 12:20 pm
Does the puple stuff glow? If so I would guess that you’ll be developing super powers any time soon. Your kryptonite? Metal door handles…
Glad to hear that your holding up and still possitive. We all love you loads Joe. Loads of possitive thoughts still coming your way from me.
giles (duffy) // September 28, 2007 at 10:04 pm
don’t knwo if you got my email so i am blogging. which is quite spacious really. and so white?!!! anyway, good news yer on a new chemo regime - they have gotten a lot lot cleverer at chemo in literally the last few years. and remember that once your hair goes on chemo, when it comes back, you dont ever go bald. this is what my bro tells me as he eyes my gleaming pate in an ironic fashion…
hugely big love to you and emily and family and don’t forget to call on my second hand experiences with chemo any time of day or night.
jeez imagine how heavy your bass sound would be right now whilst you’re FULL OF HEAVY METAL!!!!!
XXXXX
G
giles (duffy) // September 28, 2007 at 10:05 pm
should have said ‘LITERALLY full of heavy metal’, really.
x
giles (palmer) // September 29, 2007 at 12:41 pm
too many giles’ - i think i might change my name - i never liked it anyway - i’m thinking something along the lines of rock or chest or something out of a 70 porn film - i’ll start a poll somewhere
now onto more important things like our ginger chemo binger. cool that they have identified the primary joe - can you say where else it has gotten to so we can all zap i with our mental ether-lasers
i am not surprised by the response from everyone - speaking for myself, i think you are one of life’s beautiful people and the idea of you not being around is both tremendously sad for me and tragic for the rest of the world. Add to that the staggeringly unfair (that’s the wrong word, but ehere’s no other that will do i don’t think) nature of this and I’m kind of overwhelmed by compassion and love for you…of course now i’m going to NEED to change my name after going public with that kind of stuff!!
keep taking the purple shit and shrink this little fucker and send it back to oblivion…
by the way, we’re sending you a blackberry so you can post, email and sms without wearing out your ginglets
Scribe // September 29, 2007 at 2:07 pm
I blame all the bloody students - anyone would think the place had been turned into a nightclub, the amount of p*ss and cr*p there is over the streets. Why can’t the Police take some of that spray stuff and…
… ‘ang on, this isn’t the Argus forum, is it? Doh.
Elephant-sized needle and purple gank? Let’s hope it’s not all “in vein”.*
* Ahaaarrrrhahaha. Bet you miss puns in France. I’m sending steveh over in a little box.
Alia Halstead // September 29, 2007 at 2:12 pm
Hey Joe. I just heard the news. You are being so brave. Hang in there! I can’t imagine what you are going through.
When you feel better we should party! (email me- or facebook me)
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Alia
giles (Mark E. Boy) // September 29, 2007 at 6:58 pm
I’ve changed my name to Giles. It seemed like the thing to do.
Re: Purple liquid - I have been wondering what this could be. So far I have only thought of beetroot. Is it that?
Diane // September 29, 2007 at 8:59 pm
your blog is eating my messages so if at first you don’t succeed…etc. Taking of Facebook, it has a very nice PacMan application that Amanda got me hooked on, I have this great mental image of the chemo molecules racing around your arteries and gobbling up the C cells, picking up the odd cherry for double points along the way…… all to that annoying music (am I allowed to call it music on here?).
Of course, once home, you can do your own chemo - a friend of mine was given “5 yrs at the most” about 8 yrs ago (some disease i can’t pronounce) but she thinks she’s managed to preserve her innards with salt and E numbers - she recommends pickled onion flavoured monster munch
hang on in there, beaming good thoughts to you and evil deadly ones to the cancer.
diane xx
Burrd // September 30, 2007 at 9:48 pm
Toby and I can’t afford to send you a BlackBerry but we’ll certainly send you tea
Claire Cook (Hoogakker) // October 1, 2007 at 4:26 pm
Joe, it’s been a while - I didn’t even know you had moved to Paris!!
You seem to be in good spirits old chap - and you know what they say about the power of the mind. If anyone could think themself better it would be you!! Keep fighting the fight. I have no doubt you’ll kick that nasty cancer to the curb.
Now one thing I can definitely sympathise over is shitty tea!! Tea in the US sucks donkey balls. I have recruited my mom to send me Twinings Earl Grey and Vanilla tea bags.
Purple liquid huh?? That’s pretty futuristic. Did they give you a light saber too?
Keep your chin up sweet pea - your attitude is truly inspirational. Send my love to your rock Emilie too!
Be strong!
xxx
Julie Sides (old Gladstone Terrace-er) // October 1, 2007 at 7:37 pm
Hi Joe,
Dave just emailed me to let me know, and I just wanted to stop by and wish you well. Having just read your blogs I am truely amzed by how coherent your writing is whilst on morphine! My experince of morphine was to be a blithering idiot! Nuthin new there then!
Keep up the fight, stay strong and get well soon!
All the best,
Julie & Jim xx
Jim Facey // October 1, 2007 at 8:32 pm
Hey Joe,
Just wanted to drop you a line to let you know you’re in my thoughts. Your blog really is the last word in ‘bittersweet’.
Hang in there fella x
JD // October 2, 2007 at 11:22 am
Sorry I missed your previous update. I’m glad things are looking up. Hope things keep improving and I, for one, will be thinking about you. Shame about having to give up on your extreme programming for a while. Always did like the image of you debugging java on the side of a mountain.
Steph // October 2, 2007 at 10:59 pm
Hey Joe, a message out of the blue I know
Just wanted to say hi and send you lots of happy thoughts. Loz and Ben pointed me at your blog, it’s a properly amazing read, you sound incredibly sorted and rediculously sharp, even with drugs! Thinking of you Joe, fight from your heart and don’t let it get you.. love Steph. xx
James Bowkett // October 3, 2007 at 9:50 am
Hello Joe, We’re still all rooting for you fella, glad to see you sound so positive, I wish I had something inspirational to say, but my words are failing (and anyway, you’ve heard my usual tirade of Essex-swear-slang all-too-often before).
Keep it real. Increase the peace. Big love from the Essex massive.
Derek // October 3, 2007 at 1:34 pm
Joe Dude,
While you have (intermittent) internet access, was wondering if there are any online groups out there of people going through same/similar things?
A pal of mine who developed an incurable condition found loads of useful support/advice on the interweb.
Plus, other people might benefit from your insights, e.g. Crazy Chemo Side-Effects…
Cheers,
Derek.
Alex Bleasdale // October 4, 2007 at 4:18 pm
Hi Joe,
Just heard the news and wanted to say hello - I know it’s been a few years since I saw you last (in a pub in Brighton, I think?), but I’ll keep checking for new postings…
I just wanted to say that I’m wishing you all the best - and I’m glad to see that you’re handling things with such an incredibly positive attitude and writing with such wonderful humour!
Best wishes,
A
Daniel Hart // October 11, 2007 at 3:32 am
Hi again, damn, your mates are quite a bunch aren’t they?! You’re lucky. I’m reading this and thinking about what you have been up to (well, I asked your parents last year too).
I just want to say to you, I admire you hugely, and really hope you can keep your spirits up, because it must be tough at times.
You know, I can see you whenever you like - you mentioned Churchill, that is walkable for me! Well, whatever, I give my love to you all, and hope to hear from you.
Really thinking of you (and where on earth did you two get the ginger thing, sure you are not adopted - I know Sheila is a *bit* ginger but heck, to have two?!)
PPS I never got that thing about ginger. My girlfriend is “strawberry blond” and that suits me fine. Apparently, the gingaphobia is something quite perculiar to Britain. I had plenty more to contend with as a kid. Paki, gay (not a sporty man, me, and liked pics and poetry, a clear sign) and the rest. Red hair? Pfwaa!
Truly best wishes,
Dan x
Leave a Comment