Innards

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.

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36 responses to “Innards

  1. Bloody hell! I did wonder yesterday at the unusually thorough bashing those kidney stones seemed to be giving you…

    Most of my thoughts are in text and email but I always like to see comments on my Blog so here I am again 😉

    Get well dude – all my thoughts are with you.

  2. Strength does amazing things, I’ve seen it. Stay brave. You’ll do great.

    Sending loads of love your way.

  3. “Indefatigable” is really hard to say out loud, but a good word nevertheless. Also, I’d get on the hospy blower to Jacob’s about that Ginger Twiglets thing (“They’re new! They’re Ginglets!”) before some thieving commie netsurfer steals your idea.

  4. in-de-faatee-ga-bleurghhhhhh

    I bet you can’t wait to get back on the Cheese, I found a great one the other day, Ragstone, it’s English but if you leave it a week or so it goes like some of the better French goats cheeses you get in little petri dishes that bleed everywhere, hmmmm.

    You’re a tough cookie Mr Holmberg, remember you’re a womble, a womble flavoured cookie, I’m not sure it’s legal but it sure sounds tasty!

    Keep the smiling and your good sense of humour and you’ll sail through no worries 🙂

  5. My thoughts are with you (and your Ginglets). I have every faith in you. If you get the time, please keep posting.

    P.S. I’ve managed to lose your email address!
    P.P.S. Doh!

  6. hey brave boy – it’s a fuck, but it sounds like you are focusing on making the right decisions which has to tbe the best thing to do.

    i’m sure you will have some pretty terrible days. i for one am going to post stuff up here as often as i can. i’m thinking about you all the time and i’m going to give you as much support as i can.

    good luck with the decisions tomorrow.

    g

  7. ps your friends have funny names!!

  8. Ooh yeah they do. For instance “giles” – fancy having no upper case letters…

    I’d have a go at that urban-legend cure for the Big C if I were you Joe: Go and hire tons of funny videos and lock yourself in a room watching them (uh, with a pizza delivery slot in the door) and laugh yourself well.

    Only half joking! (The bit about the pizza – can you imagine me recommending that?)

  9. 🙂

    it would be nice to know who everyone is that’s all yeti-boy

  10. Well fuckadoodle.
    Zulq just pointed me over here.
    Stay positive and fight this bastard tooth and nail.
    I was thinking of the invader in your body rather than Zulq. Though maybe you could try beating him too. It can only help.
    If you can stand some of the rampant American positivity it contains, Lance Armstrong’s book It’s Not About The Bike has a good and fairly frank account of his battle with and against-the-odds victory over his cancer.
    Chin up old bean and take the time to read up on the standard British queuing system again please.
    – Ben

  11. P.S. ‘Chemo Cocktail’ and ‘The Where Decision’ are both totally excellent band names.

  12. Giles – wave your mouse over several of the names and you’ll see they’re a link to the person’s website! 🙂

    Look at “About Red Yeti” on mine and you’ll see I’m Dave Wood.

    And blimey it’s amazing how many of them I know – hello all!

    Joe – I’ve just thought you’ve even got a whole new set of French comedy DVDs to choose from now too 🙂

  13. Hi Joe,
    It’s perfectly clear to me that the answer is a homework tablet (groan). I have a few tucked away 🙂

    It’ll slip down a treat, frighten all the baddy cells before the chemo gets a grip and you’ll have a funny time explaining the number hiccups and working out all the sums in your spare time, while humming along that unforgettable tune which is not available here http://www.channel4learning.com/sites/numbercrew/frame_kids.html

    You can always translate the whole lot for the locals too… Only 4 CDs I think. I know how to fill your time don’t I?!
    Wishing you all the best with the decisions and getting better, and sending a French Kiss (the 2 cheeks one!)

  14. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  15. Mate, what can I say?….That’s truly horrible news, but we have every faith in you to beat this mofo.

    (It’s amazing where all these nerds came from BTW!..H3ll0 n3rdz)

    If there’s anything we can do from this side of the water let us know, we’re all with you bud.

    Take care,

    James

  16. Hi Joe

    Tried to send you a text while I was in France on Friday night, but ran out of credit, I think.

    My thoughts are with you, Emilie & your family, and if there’s anything I can do to help, please don’t hesitate to ask.

    Just keep focused on an image of yourself when this is all done & you’ve gotten through it, being happy and enjoying life. My grandmother’s had chemo twice in the past year — I guess sometimes it’s things like this that make you see what your priorities are — as you say, friends, family, stupid shit that your friends on your message board 🙂

    Hang in there !

    Amy xx

  17. DudeDudeDude

    That’s crazy and not in-the-least-pleasant news, but you sound like you’re coping amazingly well. There’s a wonderful tone of positivity in your posting and it’s inpiring and encouraging to hear.

    Keep smiling, keep positive (it’s an amazingly powerful force) and you’ll get through, beaming and creative as ever.

    All the good wishes I can muster
    Simon

  18. Dear Joe,

    You are very brave writing it all down and sharing it with us.

    Right; from now on I will gather all the positive energy I come across in London and send it all to you. Starting now – won’t take long until it reaches Paris… you will feel it soon.

    I will keep gathering and sending more and more positive energy until you have completely beaten the cancer. And then we will have a party.

    Take care. Miss you.
    Venla

  19. Sir, I salute your courage, your strength, your indefatigability. Let me know if there’s *anything* I can do to help out.

    -alx

  20. I agree with everything people have said. You sound so possitive and brave. As much love and possitive energy as you need coming from me. Any suport you need please do ask.

    You do sound like your on top of it and coping. I have a friend who found out that he had cancer earlier this year, he’s doing fine now.

    At least if your back in oxford we can come and see you easier and say hello.

  21. Hey Joe,

    Sorry to hear your news. A close friend has just been through similar but after 3 years has now come out the other side. It seems to bring out strenth in people. My thoughts are with you. x

  22. Joe,

    Shocked when I heard about this one. You sound remarkably level-headed.

    Don’t think you should worry yourself too much with the “what I might have done differently” thoughts. Maybe more “which Brighton venue should I play when I’ve whupped this mutha?”

    Blogging probably not a big priority right now, but keep us in touch with how you’re doing.

    Cheers Man.

  23. Hi Joe,
    Remember me (Amy’s friend from Oxford)?
    What can I say but keep positive, keep fighting and I know you will get through this. You and your ginglets can do it, I know it!!!
    Don’t give in to it ever!

  24. I wish to say three things that seem to have emerged as scum in my brain pond:

    1) If you fancy a visitor (seriously), it’ll only take me 24 hrs to travel to Paris – couple of hours on a train, and the rest of it remembering how to say “Where is the hospital?”

    2) I love you, you big ginger bass monster (you see what I did there… I said I loved another man and then made ‘a joke’, so that my machismo remained intact).

    3) During chemo – please make the effort to develop super-powers. Your quality of life will be so much higher when you come out the other side.

    Hang tough buddy,
    Big love
    -m.

  25. Joe, my some time filming partner, IT genius and all-round good guy. I’m a bit floored by the news and by how positive and solid you sound. I think you’ve got things spot on in terms of attitude, your tricky decisions with the support your loved ones will be fine. You’ll come through this stronger and wiser no doubt. You were never 74Kgs were ya?!

    Always keep your head above this, stay strong and beat the cancer.

  26. Hey hey bass monkey

    We will have none of this cancer nonsense around here. Do you understand? Do you? DO YOU??

    Good. Now we’ve got that sorted, anything you need just say and I will weave whatever magic I can for you.

    Muchos love to you, stay in-da-fa-tea-gah-bull and the bastards will never get you! xxxxxx

  27. F#*k,

    I have spent a couple of days trying to figure out what to say on your blog! All I can offer at the moment is an old time virtual LJ hug!

    I hear Kylie has good thing’s to say about the French quacks!

    Pull through this Joe! I have a lot of Trinity parties and network Tetris, light bikes and Bob kicking our butts at Quake and Doom to catch up on on the 10 year reunion!

    My uncle has recently been cleared from his battle with full on lympatic cancer so they can achieve a lot.

    Same as everyone posting here, if I can do anything then please let me know!

    Love you Joe!

    Lawrence.

    P.s. Sorry about the grammatical errors which I’m sure you have picked up on and and cursing me for! Bought, Brought! Whatever!!!

  28. I like marks idea.
    Deffinately develop super powers.

    I would pose this as your most important question to your doctor “what super powers will I be developing after my treatments” I would push for teleportation if you can that way we could get you see you more.

  29. Yo Joe – bugger 😦 that sounds a tad nastier than just a cold 😦 Thinking of you mate. There are frothy ales in Blighty waiting when you are well enough for the trip!!!! 🙂
    Hugs
    S

  30. Little Drummer Boy

    Bonjour, Les Sange de la Bass……

    I was gutted that we didnt see you when we were in Paris the other week, paying E15.80 for 2 pints of over-fizzy lager outside Gare Du Nord, but I guess you were a bit layed up with the over abundance of calcium anyway.

    Hope your feeling OK.

    I’m sure the chemo will get things fixed.
    My mate Helen is doing OK and she’s got two brain tumours!
    These things aren’t as bad as they used to be.
    You’ll be vomitting red wine all over the wall in no time at all 🙂

    Look at Lance Armstrong, he had all of the cancer and he’s fine (and dated Sheryl Crow, though I’m not sure whats worse)

    Stay tough mate, my thoughts are with you, and you’re a stubborn fucker, so you won’t let it get the better of you anyway.

    Love to you, Emilie, Pat and your folks.

    See you soon fella
    Toby
    xx

  31. Hey there Joe,

    I have no idea if you remember me (friend of Amy’s from Oxford-stayed with you guys once in Brighton…) anyway I just saw this on Amy’s blog.

    Crummy, lousy luck, but the human body is incredible and the spirit more so….and both continually baffle medical science. I have a good friend who ‘ought’ to have died many times over from assorted cancers and hasn’t – and not even the specialists can figure out why. Same thing for some of my family who have had particularly horrible types of malaria.
    Statistics are only numbers – %s don’t tell you if people are alone, old, unhappy, have other health issues or simply decided to give up.

    I sound like an utter hippy, but positivity is hugely important, likewise support and it sounds like you have barges of both.

    Acupuncture helped a good friend of mine with breast cancer, likewise organic diet and lifestyle (tons of chemo is a lot of chemicals on its own) and also…..don’t laugh….. having a dog / cat.

    Sending you lots of good thoughts, and if I could bottle this Greek sunshine and sea air to send to you, I would….

    Ruth

  32. Hi Joe

    Really sad to hear your news, though know you are a tough Ginglet so feel sure all the positive possibilities will be the realities.

    If Hilary’s suggestion about the Homework tablet does not quite do it for you then I have another little helper…

    The Ecolab… remember that UG project ☺

    I think there could be a whole new world of possibilities about what eats what…

    Anyway, my thoughts are with you and much love too

    Rose
    xxx

  33. Hi Joe, well, after reading this lot through, I think it is fair to say you have a fair few supporters!

    Actually, I am a blog-reader of sorts, and I thought your posts were fab in general. It sounds like Emilie is the girl every man would love to have, so I am really glad you have the care and consideration you need.

    Certainly thinking of you – and tell Pat to let me know when he is doing a gig in Oxford!

    PS Oxford is still as slow as ever, which suits me fine.

  34. Hellooo Joe & Emilie,

    I reckon when things like this happen it changes completely ower perception of life. It is good to know that you’re keeping strong and positive about the new challenges. We are here for you (and if you need help with renting the flat here in Brighton we can give you a hand!). We are looking foward to see you well!
    loads of love,

    Ruy & De.

  35. Hey Jo, its Si. Just thought i’d drop u a line to let u know that I’m thinking of you. I obviously dont have to tell you how shocked I am to hear of your illness and how I hope that things are on the up for you. Have been a bit out of touch with whats going on exaclty but I hope this email finds you well.
    I myself have opted for the ex-pat life style and have fled the financial burdons of British citizen life and am now residing in Vietnam. Im teaching English now, which is cool, missing the band stuff but I don’t think my post-graduate life in Brighton was very sustainable. Anyway, just thought I’d drop you a line. As I said, I am very much hoping that your kicking cancer’s ass. Be good to hear from you and to hear how your getting on but I understand that your probably a bit preoccupied. All the best buddio, hopefully hear from you sometime.
    RAWK!

  36. Pingback: Decency, Mutual Respect, Hard Work & Creativity: Remembering Joe - Brandwatch

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