Remembering Joe – updated 25 February 2008

Saturday February 23rd 2008 – Sunset at Alfresco’s on the beach

We had hoped for a glorious sunset ……….  but we  did get the starlings swooping over West Pier.

The gathering on Saturday was beautiful.  All you people with a connection to Joe’s life in Brighton were a testament to how he built up and lived his life there.

He found such joy in his time at Sussex University as a student and researcher and as a Developer at what was then called the Runtime Collective, which we have come to believe was set up, with its unusual philosophy, especially to provide a perfect niche for Joe!

Our memories of Joe in Brighton glow.  Through hearing anecdotes in conversation with you on Saturday we shall think about, talk about and store more memories in our hearts.

We wish to thank Daniel Duquenoy, Graham Forbes, Giles Palmer, Dave Wood and Giles Duffy for their memories shared publicly, Guisseppe and his staff at Alfrescos and Tom Sharp for performing three of Joe’s songs.  More of Joe’s songs, probably recorded in his bedroom, can be accessed on http://share.runtime-collective.com/~joe/ropebridge/.

Joe’s last musical venture, recorded in Paris with Vanessa is Krauschanl’s E-waste.  We have a few spare copies of this EP so, if you didn’t get one, please e-mail your postal address to us at geoff@holmberg.plus.com and we shall send you a copy.

Thank you for joining us

Sheila, Geoff, Pat and Emilie.

Christmas in Hospital – updated 1st January 2008

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!

Lawrence Jupp

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.

Some Unequivocally Good News and Chemo #4

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.

Whatever Happened To… Chemo #4?

So this afternoon, I checked into hospital for chemo session #4 to begin. It’s been a wonderful third week; the part of my cycle where I take no chemo drugs at all. I’ve felt almost completely normal, and have been wandering around all over the place in our neighbourhood with Emilie, sorting out bank accounts, food shopping, messing around with the attestation-printing machines at social security offices – just everyday life stuff, but it felt great to be able to do it. We went into the hospital Tuesday to drop off the CAT scan results from last week, and we walked there. To be able to do that under my own steam (with, of course, the portable Puritan’s aid) was quite an amazing feeling.

So, I’ve been letting myself feel quite cautiously optimistic. When chemo session #4 rolled around again today, I wasn’t really feeling too worried, especially after last Friday’s “not bad” news – I kind of expected to just come in to hospital, load up with the purple, and roll out again the day after. But in fact, things have turned out a little differently.

Firstly, it was the casino-heist medical team scenario again.  In sweeps The Prof’s second-in-command, accompanied by an intern (unlike in “Scrubs”, a proper qualified cancer-expert doc) and a senior nurse. They proceeded to explain that they were concerned by my continued loss of weight, and possible causes of this – it isn’t the chemo, as I haven’t been vomiting or suffering from loss of appetite. It’s true I’m now down to 50kg, down from 57kg at the start last chemo session, and this has been bothering me a little – especially as I’ve been eating like a horse. (I haven’t knowingly eaten horse in this time, even though I am aware this is an option in my new adopted country.) The docs went on to explain the comparison between last week’s CAT scan with the original from September hasn’t yet been done, and will in fact be hard to do, as the original hadn’t involved an iodine injection – my kidneys weren’t up to it at the time. So, they swept out again to go and do the comparison as best they could, and come back to let me know what they could get out of it.

Cue slightly sweaty palms.

I slept. A while later, The Prof’s second-in-command came back alone. She explained that the general improvements in my clinical health (better breathing, being able to sleep lying down, etc.) have been caused by improvements in the side-effects of the cancer – but that the cancer itself has not actually shrunk or diminished in any way.

To start with, this scared the shit out of me – so the chemo hasn’t really been working, after all? But, apparently, it has, to an extent – there’s been no spread, at least. Already, this is good. And apparently, with the rare kind of tumour that I have, it’s not uncommon for the normal, first-shot, mass-market chemo drugs I’ve been taking not to necessarily be that effective. Another piece to the puzzle is that since September’s biopsy, they’ve been slicing the cancerous tissue they extracted and have been subjecting it to all kinds of chemo chemicals, including the purple shit – and it turns out that Mr. Purple in particular is completely ineffective against this kind of tumour. So, the good side of this: I will definitely stop taking the purple component of the chemo, which is actually the most toxic part – that’s what’s making my hair fall out, for example. The… I hesitate to call it “bad”, so the “other” side is that they’ll need to change my chemo treatment to something else.

This is, of course, not necessarily a bad thing at all, but it still gave me a bit of a chill – of course I would have preferred to have heard “yes, the cancer is shrinking faster than a forgotten sprout in a pressure cooker, and we’ll just keep on going exactly the way we are in this semi-comfortable routine and you’ll be sound as a pound in six months”, but it was not to be.

So by this point, it’s 9pm at night, and the Prof’s deputy didn’t want to make a major drug-changing decision without consulting senior colleagues; absolutely A-OK with me. But she has some ideas. She wants to try a new, extremely expensive and “interessant” (promising) drug, and to do this, she will need to get all kinds of approval and possibly push some weight around – but she’s confident it can be done, especially as this is a teaching hospital I’ve found myself in. (Entirely by chance; my lucky stars are overdue for a good thanking.) But nothing further was going to happen that night – so, she sent me home, which is where I am now blogging this from. I’ll get a phone call early next week to let me know what’s going to happen. I may even (holiest of holy grails) be able to come in a receive treatment as an out-patient, bypassing the need for hospital food entirely.

Brief motivational gastronomic aside – for dinner at the hospital today, I was served my absolute least-favourite “meal” ever, which co-incidentally was the same I had just before starting chemo #2. That time, I threw the whole lot up several hours after ingesting The Big Purple in one silent, dry, completely undigested lump. So this time, I decided just not to eat it – hell, I’d eaten for about three at lunchtime (my dad’s salt-free chicken pie), and my innards just did not need soggy, wilted, boiled-to-string green haricot beans with a dry-but-still-somehow-disgustingly-limp lump of what was apparently veal steak haché, but could frankly just have well have been a round cake of unidentifiably-processed grease. Good god it was revolting. I just could not fork the stuff into my mouth. I tried. I failed. So I ate a good portion of the thankfully tasteless leek-and-potato soup, the accompanying apple and some bizarre cottage-cheese-type yoghurt thing, and left it at that. And now we’re back home, I have supplemented this with a slice of delicious leftover salmon-and-leak quiche with a lettuce-and-roast-beetroot salad, and my lucky stars have another item on their thank-you list.

So – no chemo for ce soir, nor for the weekend – something new and exciting begins next week. I feel slightly more like I’m venturing into guinea-pig land, but that’s the way it is – and clearly better to be trying something that might work than something that definitely isn’t going to.

More news, of course, as and when. But for now, we’re back in One Day At A Time land, and from that viewpoint, I have a blissful extra drug-free weekend to enjoy. A gift.

Night all, and hope all’s well with everyone.

Some “not bad” news

So tonight, I had CAT scans of my abdomen and thorax as an outpatient at a clinic in the centre of Paris.  The ambulance firm had lost our booking, and eventually arrived to pick us up ten minutes before the scan was due to begin.  Not the best start – “Ambulance de Triomphe” not particularly earning the moniker so far.  Still, they got us there in a miraculous twenty-five minutes, through the Metro-strike-jammed chaotic heart of Paris, and waited patiently afterwards while we waited for the scan results.  And… for us to have a run-through of said results with the clinic radiologist.

That I was not expecting.  I’d thought we’d go, have the scans (in fact, scan singular: originally the lung scan was due for next Monday, but they squeezed both in tonight), and trundle off in merry ignorant bliss awaiting the hospital interpretation next week.  But in fact, I have news.

The stomach ganglions are “much smaller” – “hardly there”.  This (we asked several times) is definitely a Good Thing.

The lungs are “different” – there’s something there (the radiologist thinks an infection of some kind) which is blocking the view of anything cancerous beneath.  (And, incidentally, he thinks causing my chronic cough.)  But whatever’s beneath apparently wouldn’t have got any worse, or we would see it.  So this is a point of confusion, but not bad news.  I’ll see a lung specialist at the hospital next week, when I go in for chemo #4, and we’ll see what’s going on.

My liver and kidneys are completely clear.  There is no further spread or metastasis visible on the scans.  My kidneys are “nickel“, apparently – squeaky-clean; both stents (the tubes stuck between kidneys and bladder) still well-placed.  I’ve been seeing a lot more blood in my urine the last few days, but this is apparently almost certainly just the stents doing their thing, and nothing to worry about.

It’s very, very difficult to get excited and let go, and I’m wondering at my reserve (which I think is coming across in this post, too) but I think I can definitely say this is… not bad news.

Cottage pie getting cold, so no time for editing or reflection, so I’m just going to post.  Love to you all, from shocked-of-Paris.

Reprieve

So I’m writing this entry from back home. Less than 24 hours in hospital and I’m out again, not to return until the 23rd.

I’m still quite amazingly spaced and tired from the chemo, so I’ll keep this short and sweet: I’ve started chemo session #3, and am to book an appointment for a big deep scan of some sort (chest, abdomen, stomach, the lot) at a clinic of my choice (anywhere I can find with space, basically – the hospital itself is fully booked up) for two weeks’ time. The results of this scan will be compared with those from a similar scan I had done just before my diagnosis – and from this, the docs can see how well the treatment has been going.

So: a temporary reprieve from The Scene.

But there’s more – and I’m having real trouble here in trying to keep my hopes from spiralling up out of all control. On arrival at the hospital yesterday, I had a chest X-ray on my lungs, one of the places my (stomach-originating) cancer has spread to. Today, before checking me out, the doc who gave me the run-down on all of the above said this new X-ray shows “une amélioration” (an improvement) from the one I had before being diagnosed. My lungs are clearer than before I started the chemo.

He was careful to emphasise we have to do the big scan before reaching conclusions about how I’m progressing. But he was smiling.

When he left the room, I cried like a baby. I’m about to cry again now – time for a sleep, I think. I can’t let myself read too much into this, I just can’t – but my lungs, at least, are showing signs of improvement. Improvement!

I fear this post has crossed the line into fatal mawk. I’m stopping now, blaming the chemo, and going to see I have more success reading Galaxy Quest on my home DVD player than on my laptop.

Night all.

Embarrassing Film Admissions #2 and #3

So wide awake at about 4am, I decide to go against all the wonderful advice I’ve been given by a multitude of smart, right people (and which I wholeheartedly believe myself), and forego further sleep to watch “Batman Begins” on DVD. To my horror, I realise I’ve already seen it, and thought it was dreadful. (Sorry kind lender!) So I swapped it out for “Galaxy Quest” – which wouldn’t play. This was, I decided, a clear enough sign. PC – off. Three and and half wonderful hours of dreamless sleep later…

Still In Bed

Interesting – had to truncate that last post. Ran out of room on my text entry field. Nothing much more to say but – tongue, throat, lips, fingers (and thumbs in particular – why thumbs?) not quite responding as normal. Due to strategic slipper placement and prior tap temperature experimentation, I’ve limited the “cold shock” effect – but still need to drink slowly to avoid throat-stick. But – all in all, so far so good. Bring that purple shit on!

Blog From The Bed

My god, technology. I’m blogging this on my mobile phone, from my hospital bed. Live from the purple horse’s mouth!

So I’ll keep it short, as doing this on a keypad is really, really annoying. Chemo #3 begun last night. Almost the second the purple liquid hit me, I fell deeply asleep, so missed the bulk of the rest of it. I’d be a really rubbish journalist.

At around 3.30am I woke to find paralysis side-effects in full swing – but not, I fancy, as strong as last time. Got to be good…