Ben Non Bar None

Surfing on a Wave of Love

After 2 months of ill health Joe was diagnosed with malignant cancer on Sep 19th 2007. Despite a very poor prognosis he had a great desire to live and was valiant and hopeful throughout the next three months. In this time he was supported, nourished, slightly bemused but moved by the love and generosity of

• the families of Charlbury
• his school friends and teachers
• friends and colleagues from Sussex University
• friends from Runtime
• fellow musicians
• people whose lives he touched through friends and family
• French friends
• his loving family
• his partner Emilie who was at his side throughout and with whom he enjoyed Autumn days at their flat being acutely aware of the fragility of their life together but certain of their happiness.

He felt privileged to have such a fortunate life and he told Emilie he was surfing on a wave of love.

We should like to give praise and thanks to the wonderful oncology team at Saint -Louis Hospital in Paris who were medically vigorous and tender with their care.

Joe will be cremated in Paris at a short informal gathering for French friends and family. His ashes will then be brought back to Evenlode House in Charlbury.  Later this year there will gatherings in the UK of friends and family in both Brighton and Charlbury.  Donations to Cancer Research please in lieu of flowers.

Geoff and Sheila

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Sadly, yesterday, December 28th at 7.25 GMT Joe died in Saint Louis Hospital here in Paris.

He will be cremated in a short simple gathering at Pere-Lachaise on Monday 7th January at 9.45 GMT .

His ashes will be returned to the UK and we will hold some gatherings for friends and family there later in the New Year.

We will keep this blog going and update it with information about these gatherings later.

Geoff, Sheila, Patrick and Emilie

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Well, it’s looking more and more likely that I’ll be spending Christmas Day right here in St. Louis Hospital. I’d been getting weaker and weaker following chemo #4, and with a lovely cough-and-spit to accompany it - it was obvious something wasn’t right.

To cut a long story short, I checked into the hospital Tuesday 11th, and have been here since. I’ve become incredibly, depressing feeble - I’m no longer capable of doing the simplest of activities (getting out of bed, even sitting upright in bed (this requires two nurses to lift me), going for a #2 (number #1s I can manage, with the aid of a strange “pistoler” device which makes it possible to piss into from almost any angle - very handy!) unassisted. I’ve also developed an enormous, cracking cough which is generating enormous amounts of phlegm - but of course the act of coughing/spitting the phlegm sends me into a complete respiration panic attack.

That’s the other thing I didn’t mention - all this is caused/linked by a huge chest infection I seem to have developed at the time in my chemo when my white blood cells were at their lowest. It’s being hit with a second round of antibiotics, which appears to be helping (first round, all-purpose round completely useless), and have had a “punction” to drain some of the fluid from one of my lungs. Impossible to get the whole lot out as the needle keeps getting jammed with blood.

So - there you go. All of this helps, so things are moving in the right direction. Though I have the occasional panic where I feel like I just can’t breath - even though I patently can, or I’d be dead rather than worrying whether I could breath or not. I’ve been having trouble sleeping, mainly down to breathing difficulties, I think. There are various drugs being added to me intravenously to calm me down, more steroids to try and sort the fucked lungs out, vitamins as I’ve lost my appetite and and finding it very hard to eat, and goodness knows what else.

So. A low point. Hard to keep moral up at the moment, but people are being extraordinarily helpful as normal, and I’m getting by. Thanks especially to Ben, James, Noel and Zulq, for the Care Package of DOOM - as I am sleeping most of the time, or at least lying with my eyes closed, the audiobooks are great.

Anyway - doesn’t look like anyone’s going to be checking me out from here anytime soon, what with my inability to move more than a few inches of my own volition, so I reckon we’ll be breaking the tinsel out in Fugure #6336.

This is the first time I’ve strung together enough energy to write something, so I guess that’s progress, anyway - even if it’s all a bit negative. Next week, maybe: standing up unaided will give me something more positive to write about.

In case I don’t post again before, Merry Christmas, everyone!

Heard on Monday from Dave Wood that Lawrence Jupp, who we’d both met and lived with at uni (and lived with for years after) had been tragically killed in a motorbike accident that day. I don’t know what to say, so I’m just going to point you at RedYeti’s “In Memorandon” (see his blog in the Blogroll - will put in proper link when I’m not posting from my phone. Lawrence, you big indestructable goon, I’ll miss you.

To attempt to make up for the recent shameful dearth of posting (there’s been a strike on, y’know), here’s a bumper Christmas two-post edition.

Some Unequivocally Good News

So last Sunday, I cruised into hospital by (fully-reimbursed) private taxi instead of the planned bone-shaking private ambulance, who had decided not to come (and also decided not to tell us until we phoned, slightly frantically, ten minutes after they were supposed to arrive) because it was a Sunday, and they often get “a lot of emergency cases on a Sunday”. I swear I’m walking it next time.

I’m booked in, and am informed my next chemo regime will start tomorrow - I should be out Tuesday. Not too shabby - couple of days in for monitoring the effects of the new drugs, then back out to freedom, glorious boiled-veal-free freedom. We ask if it’s possible to talk to the Prof, or maybe the Second-In-Command, about the new regime and what’s changed. This is promised for Monday, tomorrow.

Monday duly follows, and in comes Second-In-Command with some surprising and honestly, unequivocally good news. After much careful and repeated analysis by a variety of doctors of many disciplines (from both inside and outside the hospital is implied), The Team have decided that the first chemo sessions have actually been having a much more beneficial effect than previously thought. Instead of just preventing the cancer from spreading, they have in fact been reducing it, in both the lungs and the stomach ganglions (ganglia?). The treatment has been around “15% to 25%” effective, Second-In-Command says.

Hot damn.

(I don’t think that means it’s killed that much of the cancer - in fact, I’m not entirely sure what it means.  But it’s definitely good.  Right?)

So for chemo #4, which began that very Monday, they keep the colourless liquid from the previous treatments, discard the useless Mr. Purple as planned, and add a new (disappointingly, also colourless) liquid, which has a past record of working very well with the original colourless liquid. (I probably should find out the names for some of these incredibly powerful and toxic chemicals being oozed into my body.) I’m ditching the daily pills which normally followed for the next two weeks, which filled me with wonder. The stuff they’re going to inject me with today is going to lurk around in my body killing things for another TWO WEEKS? Wow. I eye the intravenous drip bags with renewed respect, and no small degree of fear.

There are all kinds of incredibly important details which I’m sure I’ve forgotten, and probably some gross factual errors (maybe I just dreamt the whole thing), so maybe I’ll bottom-edit them into this post when Emilie wakes up (this is a rare 3am-can’t-sleep-despite-the-fact-I-normally-do-nothing-but-sleep blogging moment). But the main thing is - it’s working. The chemo is working. And when The Prof himself makes a cameo appearance at about 8pm that evening (I don’t know when these French doctors find time for their golf - they must do it in the mornings, as there’s never sign of a stethoscope around the place before 3pm), he claps me hard on the shoulder (who knows, maybe he does physio too) and says “Now we want you to get better faster”. That is a long way from where we started from.

This is too good news to keep secret for as long as I have (events Monday, post Saturday?), and I apologise, but in my defence I beg the effects of…

Chemo #4

This cycle is proving slightly different. All the immediately obvious and weird side effects from the first treatments are gone - no more cold-shocks, numb-twitchy-Thom-Yorke-facial-gestures, and I’m told no more hair loss - though that’s becoming a moot point for the increasingly slap-headed Holmberg bonce. When they administered the new chemical, I had to wear enormous refrigerated Mickey-Mouse-style blue mittens for the duration. This, apparently, is to prevent damage to my hands and nails during the treatment. That has to have been one of the most surreal hospital moments so far. Photos were taken, and I will upload.

But really, what Chemo #4 appears to do is make me want to sleep all the time. I get up, I have breakfast, I sleep for an hour or so. I get up, have lunch, sleep for two, maybe three to four hours. Get up, dinner, and… well, ok, at this point I can usually keep it together enough to watch a film or, if a late waking from the afternoon kip has delayed dinner too much, a few episodes of Black Books, Family Guy (from my brother Pat’s inexhaustible collection) or some-such diverting nonsense. And then it’s sleep again, until breakfast rolls around again with its charming inevitability. I exaggerate slightly, and there are days where I do manage to get some things done between the naps - or skip one entirely to gain maybe hours of conscious life. But missing one out does seem to affect my emotional stability - I get moody, prone to tears, and generally even more unreasonable than normal. (Although maybe Black Books before bed isn’t such a good idea.) So it seems I need it - but good god, really, so much? Mind you, it is still week #1 of a three-week cycle. Perhaps my sleep needs will drop towards the end.
Keeping the three-week cycle means that my next set of injections were due to happen on Christmas Eve itself. That would have been jolly. Fortunately, there are human beings somewhere involved in the patient booking process at Saint Louis hospital, and in fact, I’m going in several days later on the 26th. My parents, plus Pat and his girlfriend Liv, are coming over for Christmas itself, as Puritan Bennet (my oxygen cylinder, for the uninitiated - this blog is really starting to need a Dramatis personae ) restricts my movement somewhat. So all looks to be working out beautifully - croiser les doigts.

On the more negative side, I have been experiencing various strange gut troubles, digestive, er, irregularities, and other sweet and pleasant minor deviations to the normal and regular functioning of the healthy human adult male human - but it’s hard to put these down to the chemo, the disease, or just sometimes an excess of cauliflower. None of this is too disturbing, however, normally there are pills I can take, and set in the context of a cancer treatment that is actually working… small potatoes, in particularly pressure-cooked-small lower-case letters.

So good wishes and good health to everyone, and hopefully I’ll p-p-p-p-pick up the posting frequency a little - in between my heavy sleeping schedule, you understand. And, as always, thanks for the visits and words and thoughts and calls of support, and it’s wonderful to see and hear and talk to you all.

Night, all.