Ozymandias: Some Bad News

[Serge]

Well, as you may have noticed, I'm now out of hospital. I can't tell you the relief at being able to sit in a chair which is actually comfortable, in a room where the windows open. And tonight, I'm looking forward to sleeping on a mattress which isn't hard enough to give me the sort of backache that's so bad that sitting in a hospital chair actually provides some relief. Simple pleasures.

As you may know, from my posts over the past few months, my health has been in a bit of a downward spiral. Briefly, towards the end of last year, I started getting chronic indigestion. I went to the GP, who diagnosed stress and palmed me off with some tablets, a pattern I was to see repeat itself over the coming months. At the time it seemed fair. I had gone back to work at the busiest time of year, about three months after I'd had a major op to treat my third bout of cancer. Stress wasn't in it. But the symptoms got progressively worse, and return visits to the GP just elicited the idea that I should 'just take things easy', you know, as you often can when you're working in a busy high street bookshop just weeks before Christmas.

Things got worse in the new year, the indigestion being beyond anything you might even approach calling reasonable. Some more aches and pains appeared, and I signed myself off work in early January. Apart from a disastrous attempt to return one Sunday a couple of weeks later, I haven't been back, as my health has deteriorated so much. To begin with, I had the return of the breathlessness that I had last year, but much worse - I couldn't walk across a room without panting, and walking upstairs as home meant I had to lie down for a few minutes afterwards. My walking was getting bad - I was trying to get out for the fresh air and exercise, but it was taking me 40 minutes to walk a distance that I could usually do in ten. And when I exerted myself at all, I got the most horrific pain radiating from my left hand side all the way across the top of my stomach.

Just to add to the jollification, an administrative cock-up at the hospital meant that my January appointment for the follow-on to last year's op fell through the cracks, and I had to chase this in order to even be seen. Because of this, a CT Scan that should have taken place in early February now didn't take place until a month later. I saw my GP (again) four days after the Scan, but it hadn't been sent through to him, and he was suggesting booking an ECG - what the fuck? I knew there wasn't anything up with my heart - which would take a month to go through. So, essentially, go home and suffer for a month until we may or may not be able to book you this pointless procedure.

This was Friday 16th. Over the following weekend, the pain in my stomach and side became constant, and absolutely unbearable. I couldn't find a position to sit in which wasn't causing me pain, and I wasn't sleeping for the same reason. On Monday morning, I decided that enough was enough and decided to force the issue by handing myself in at A&E at Derby Royal. The first doctor I saw there couldn't figure out the symptoms - she also wasn't privy to my scan - and suggested that it may be fluid on the lung, but that whatever it was, I should be admitted straight away, as I was obviously in pain and needed to get to the bottom of it. Given that I'd previously had cancer three times, and was technically still under the care of the oncology department, I was admitted to one of their wards.

Later in the afternoon, a young female doctor came and asked me a bunch of questions, and after a few minutes, a young, arrogant male colleague of hers came in and asked precisely the same set of questions, in a manner which made me suspect that he thought that she had been taking my tea order. Then he said that they knew what was wrong with me anyway, as they'd seen the scan, and it was the return of my cancer for the fourth time, this time in the form of a huge tumour, basically exactly where I'd been suffereing the worst pain. Why the cocky little bastard couldn't have opened with this one, I don't know, but that's doctors for you.

But anyway. That explained everything. It was blocking my lungs, hence the breathlessness. It was obstructing my digestive system, hence the eating problems. It was basically one big tumourous bastard that was fucking up everything in its path. And to be honest.....I wasn't surprised, in fact, I'd been suspecting the return of my cancer for a few weeks by this point. There were far too many similarities with what I'd gone through before, especially the second time.

The next morning, I met the new chief oncologist, who is taking over from the consultant who has been handling my case for the past seven years (and who, I should add, is one of the few doctors who actually seems to be able to deal with real people without talking down to them.) I assumed they would would be working out avenues of treatment, and I was especially dreading the return of the dread word 'chemotherapy'. But as it turns out, that's not on the cards. Because of the aggressive nature of the previous two chemo treatments I've had (especially the second), it would actually be dangerous to try and use this to shrink the tumour.

Which then leaves us with a problem. The tumour is big. An operation to remove it may not be possible as, although it's not actually connected to any organs, its in such a sensitive position that so many things could go wrong if they try to. It's a balance of probabilities, which is currently being put through feasibility tests - I'm off to Leicester tomorrow to meet a consultant, so he can get a better idea of how much of a problem it could be. But at the moment, this is the one sliver of hope.

Because otherwise, it's inoperable. Because otherwise, all they can offer me is palliative care to make my life is as painless as possible for however long the rest of my life is. Since the first day in the hospital, I've been on a morphine-based pain relief called oramorph, and I've also been given a smaller morphine-based tablet to take twice a day. Along with a battery of other (in this case, actually useful) tablets and pills - I'm taking about ten of the bastards a day at the minute! But compared to how I felt last week, there's a real difference. I'm still tired all of the time, and have to build up my energy (a week in an airless hospital ward hasn't helped that), and have been given dietary advice, etc. But I can actually sit here now typing this with nothing more than a minor twinge, and that is something I'm endlessly thankful for.

But....that's all they can offer me. Tablets and pills to make me feel comfortable. Unless they can come up with a miracle in Leicester over the next few days, I'm afraid we have to face the fact that I have a limited time left. How limited, who knows? It could be ten years, it could be ten weeks. I'm obviously hoping for something closer to the former, but that's kind of out of my hands now. To be honest, I've been preparing for this day mentally for seven years, almost since I was first diagnosed, so I've now entered a Wilko Jonhson-esque zen calm state about it all - and boy, I fully understand how he felt when given the same news. But now I just have to make the most of whatever time I've got left. I was thinking about buying an RV and a hat and getting into the crystal meth business, but that didn't turn out so well for the last guy. But maybe.....one last mixed grill at some point.....?

[Paul Calf]

Fuck.

I'll try to say more later, but. Fuck.

Hope.

[mothman]

Fucking hell Sege, I'm so sorry.

[imitationleather]

Fucking hell. Really gutted to hear this. Sorry man.

[phantom_power]

I don't normally get involved in these personal threads but that post just made me cry. Fuck. Sorry Serge

[selectivememory]

I'm really sorry to hear that, Serge. Your stoicism in the face of this shit yet again is admirable. I've got my fingers crossed for you for your appointment tomorrow. I really, really hope there's a better outcome for you.

[Paul Calf]

I only have one piece of practical advice really:

Don't let Bodog near your pain meds.

[Blue Jam]

Fuck fuck fuck fuck fuck.

Has there been any mention of clinical trials yet? A friend of mine is in a very similar situation right now (kidney cancer which spread to his lungs and other places and is now inoperable) and he's had some remarkable results testing out some novel immunotherapy drugs. They probably won't cure the cancer but he has had a surprising degree of tumour shrinkage (and doctors coming from all over the hospital to have a butcher's at the scan) and has just celebrated the 18-month anniversary of being told he had 18 months to live... Incidentally, he reacted to that news by buying a proper audiophile turntable and a fuckload of vinyl...

All the best Serge xxx

[shiftwork2]

Much love Serge.

[jobotic]

For fuck's sake. We've had limited interaction on here Serge, but you really seem like a lovely chap - and quite amazing. Not because you are ill but because of how you seem to be dealing with it. Man.

Everything crossed that something good comes from your Leicester trip.

[Neville Chamberlain]

Thanks for the update, Serge, and so sorry to hear the news. Here's hoping for that "miracle in Leicester" ;-)

[biggytitbo]

Hard to know what to say other than to send positive thoughts and to hope for the best.

[purlieu]

Hoping so much that they can offer some possibilities in Leicester. I've got a huge list of ECM albums to recommend you and I'll not be happy with you buggering off anywhere before you've sat through every last one.

I want to express my sympathy but I can't really find the words. Let us know when you're up for visitors and I'll give you a big hug though yeah?

[rue the polywhirl]

I think you should don a hat and an RV and jump into the meth business because it'll be fun, make for good TV (again) and because you've watched the series and you'll know where not to make the same mistakes like admitting to having two cell phones and leaving incriminating books lying around the house.

[Serge]

Fuck fuck fuck fuck fuck.

Has there been any mention of clinical trials yet? A friend of mine is in a very similar situation right now (kidney cancer which spread to his lungs and other places and is now inoperable) and he's had some remarkable results testing out some novel immunotherapy drugs. They probably won't cure the cancer but he has had a surprising degree of tumour shrinkage (and doctors coming from all over the hospital to have a butcher's at the scan) and has just celebrated the 18-month anniversary of being told he had 18 months to live... Incidentally, he reacted to that news by buying a proper audiophile turntable and a fuckload of vinyl...

All the best Serge xxx

Hasn't been mentioned. As I say, I don't know if this is in relation to the second lot of chemo I had, which was a clinical trial (and plainly didn't work.) I'm seeing the new consultant a week tomorrow, so hopefully all will be revealed.

[chocky909]

So sorry about this news Serge. I'm fucking angry that this wasn't caught earlier because of crap GPs and administrative fuck ups. I hope things get better somehow very soon. X

[Buelligan]

Hey Serge, you mad old darling, here's hoping tomorrow goes exactly how you want it to.  I'm so glad you've got the pain sorted, that's a great start.  Ever thought about buying a very fast motorcycle or even stealing one?  I send you a rather horrible wet kiss, maybe even two. xxx

[buttgammon]

As football fans will tell you, Leicester is a place that does do miracles (oddly enough). All the best, and have a mixed grill on us at the next feasible opportunity.

[wosl]

Great to see you back here Serge, but so sorry to hear about the hand you've been dealt this time around.  Really hope that that specialist in Leicester can offer more hope than others have, surgery-wise, or that things can be delayed to the absolute max and that you're granted years and years more time, if that path really is closed off.  All I can offer in the meantime is the usual corny stuff about somehow valuing being in the present and not letting pessimism get the upper hand, and extracting the most you can out of being with the people you care about and doing the things that mean the most to you, to the degree that you can.  We've yet to meet each other in the flesh, but I'd love to get the chance to witness you at first hand demolishing a big grilled plateful at a future Midlands CaB meet (and I never do meets).  We're pulling for you, mate. xx 

[Small Man Big Horse]

I'm so fucking sorry man, that's horrendous news. And I'm sorry I haven't been in touch, it's a long dull story but I will be very soon. And if there's anything you need in any way please don't hesitate to ask. I know some very dodgy people.

Fuck. Much love my friend.

[Neomod]

I'm an eternal optimist Serge and so I'm sending positive vibes and strength to you Sir. Personal experience has shown me that positivity and sheer bloody mindedness in the face of adversity can go a long way.

And on this set of DVD's i'll show you how.

[Johnny Yesno]

This is really upsetting news, Serge. I hope they come up with something in Leicester tomorrow. Leicester fucking owes me. This is what I want.

[Blue Jam]

My friend had a kidney out, then tried a tyrosine kinase inhibitor and two different immunotherapy treatments when the cancer returned. If I remember correctly, the first drug worked for about eight months before the cancer became resistant, the second wasn't hugely effective, and the third-line treatment has had surprising results. The side effects also seem a lot more tolerable than those of chemo- taste changes and a change in hair colour mostly, and some inflammation which has to be controlled with steroids.

It's all a bit trial-and-error really, but there may be options beyond chemo. If you're travelling to see a specialist in Leicester I imagine the subject of travelling to take part in a clinical trial may come up:

https://www2.le.ac.uk/centres/cancer

All the best, and I hope you can be given some hope here xxx

[TIAL]

Best wishes from a lurker who enjoys your posts.

[Barry Admin]

Fuck.

[QDRPHNC]

Another fan of your CaB presence here. Sorry to hear this, Serge, just wish I could offer you more than my good thoughts and best wishes.

[holyzombiejesus]

That's fucking horrible news. Words are useless.

[Cerys]

There are several things that might be making me choke up right now.  I could be the glass of wine i just drank.  It could be the playlist I'm currently listening to.  It's neither of those.  I wish it was.

We love you, Serge.  That's all I can say.  We love you.

[Better Midlands]

Serge, you're a fucking dude.

Your Rough Trade stories, music, books, mixed grills, Brick Lane curry recommendations always keep me entertained.

I've got all my fingers crossed for you.

[Clatty McCutcheon]

Serge, your fortitude is remarkable.  Hopefully a way through this can be found somehow.