R-ESHAP Session 2 delay ..

I really, really can't type much. I'm falling asleep.

But a frustrating experience with Mrs Doctor today, resulted in me not going back to hospital on Sunday to have the 2nd R-ESHAP session, but to go to be 'urgently fast-tracked' through a CT/PET scan session.

So, another 'radioactive' internal image scan ... to find out what difference there has been so far. Remember, we were not going to be doing this until after TWO sessions of R-ESHAP.

Why suddenly change the routine? Well, because my pain-killers are going though the roof (I started on 'no more than 40mg a day' to my latest instructions of '4 x 20mg 'fast release' Oxy and 2 x 80mg 'slow release' Oxy tablets. (Total: 240mg a day). For the record, I've never taken any more than I've been advised to by my medical team. I always explain what's going on.

Also, I feel like crap most of the time, my sleeping is fucked due to background pain and ... fuck me, how many times have you read this tirade. But to sum up, they are concerned that I've had no real relief from the last R-ESHAP treatment. I have my private thoughts on this but will keep my mouth shut for a week.

Finally, the Mrs Doctor and lovely my Key Worker agreed that I looked like a bag of shite, although I'm paraphrasing ever-so slightly.

So, apparently I'll get a call on Monday to arrange my photo-shoot on Tuesday. Due to this fast-track, I should know 'something' soon. They said the results will be accessible the next day. Let's call it Friday then.

All bar the slightly angry conversations and minor details, you're basically up-to-date with where I am.

Can't write any more. Too snoozy. More soon.

your crosses fail

Uncross everything. It didn't work.

It's been confirmed I'm here for "about a week" longer. Thank you for my 120 minutes of unfounded hope.

My 'neutrophils' (white blood cell count) should be about 4 when healthy and they are heading south now below 1.8. Obviously this is the Danger Zone they want to see me over, where infections can spring up in a heartbeat.

I tried to go down to the shops. I wasn't allowed as my blood pressure is still very low when standing, so I'm literally just sitting on a bed 24/7 now.

Obviously I'm fucked off. But accepting. There's nothing else to be. There's no point stressing too much, as even when I get out, it's all got to be repeated, so it's not like there was a brilliant light at the end of the tunnel.

I guess I was just looking forward to a coffee shop with some mates, a bath, some proper WiFi, watching HD soccer, a bit of retail therapy and some music making ... The odd things you miss.

I guess all that might be irrelevant to me soon, as I crash and don't feel like doing anything at all except sleeping. Best get it out the way ... Time moves quick enough ... Its not as slow as you might expect.

Still, who'd be me, huh? Whatever you're up to this weekend, I'm sure it will be more exciting than what I've got on.

day 3 complete

Another day over.

I don't really know what to write. Just read yesterdays entry. The routine is the same.

I feel a little more listless and tired today and I woke with a sore throat, but no real complaints.

However, my head has turned into the shape of a perfectly round orange, just like Karl Pilkinton's. The steroids have have a profound effect on my weight. I hate it. It reminds me of how I used to look like when I was a bloated drinker. I've been assured it will reduce in a week or so.

I guess i've been lucky in my response to the treatment. Mild nausea and some tiredness is as bad as it has got so far. Boredom has been kept at bay, but I am beginning to miss some fresh air. I have been inside for a week now and I wonder how long it will be before cabin fever sets in. Best not to think about it too much.

I'm going to sign off. I'm not really feeling like writing. It's just an update for you to put your minds and rest that I'm fundamentally OK, just a little flat mentally.

Speak soon.

fat bastard

Bloody hell.

I've put on nearly a stone since I've been here. All steroid bloat and water retention. I feel horrible.

I will come off I've been told. I hope so, its ruining my cancer-chic look.

day 2 complete

I guess the problem with being isolated from the loonies is that there is very little of any comedic value to report. Hence the lack of blogging, for there is not too much to say, save to report that my life is now a steady interruption of various doctors, nurses, cleaners, porters, bed makers, urine-bottle collectors, specialists, blood-takers, dinner givers and bloody well-meaning visitors.

Barely 30 mins goes by without someone wanting something from me, or to give me something. I've lost track of what Im taking orally now, but it's an impressive list. Then there's the chemo bags and the stuff they pump into the central line direct.

Some odd new things for me during this treatments. Steroid eye-drops three times a day. Mouth wash for ulcers. Stomach steroids potions. Eye of newt etc.

I've just retched my first retch. Hardly a bowl-filler but the first signs that my body is beginning to wonder what the fuck I am playing at now.

Overall though, I'm still healthy but speaking to one of the Big Men yesterday, he said that the real troubles won't start until after the treatment have finished. Then the fun will start as this stuff kills bone marrow and white cells. There will be debate as to if I should bother to go home and come back when things got bad or stay here and wait for the infections to start. Hmmm. Time will tell.

It's going to be a long stretch either way. Visitors are great but I'm still in here, tied to the machine and the bed 24/7.

Still, so far, so good. I'm not in shivering, pukey, shit-hell yet and that's about all you can wish for.

A day of sport on the radio helps pass the time. Utd at 15:00. It's the small things that matter.

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Oh, for fucks sake. The premiership football is not this weekend due to the sodding midweek Euro qualifiers. As i said, it is the small things that matter. Bollocks.

day 1 complete

The first 24hrs of chemo is over. Its been all OK so far, with no real sickness but I have woke with a banging headache that even my Oxy cannot shift.

Yesterday was pretty much filled with non-stop visitors after lunchtime, which was appreciated. If I can't shift this stupid headache this am, I don't know how appreciated they will be today. Call ahead ...

And for this reason, I'm not going to write much now but just to say that I'm so far OK and haven't descended into a vomiting chemo-coma. I suspect I won't stay this OK for too long, but you never know, maybe I'm getting used to all these poisons.

Thanks for all the messages of lurve ...


Sent from my BlackBerry® 9700 wireless device

back to my bedlam

Well, I'm back. Back on a bed on the same ward I was on but a few nights ago, staring out at a new collection of soon-to-be-dead-no-matter-what-treatment-you're-given faces, with an average age of like really, really fucking old, dude.

Tonight I sleep with the masses, on ward. Tomorrow, they shall find a side-room for me, although every time someone 'confirms' this, they have the look in their eye of a teenager who promises to be home by nine.

I'm in a really good mood. Can you fucking believe that? I feel better than I have for a while and found myself wanting to fire up the ol' music studio today. The knock to my system of the Central Line procedure is fading and some energy is returning. Patchy still, but better than it was. This coming week would have probably been quite productive but, as I am becoming used to now, the minute I am OK, 'they' smash me down again.

And how smashing will a week of non-stop chemo be? Probably quite smashing indeed.

I guess there's only one way to find out. Deep breath.

Here we go again ...

let's not start sucking each others cocks just yet ...

I think the theme of this blog is 'expectation management' as today I have been greeted by air-punching, high-five giving, whooping and cheering friends, who probably just need a little gentle reality check ... and whilst I certainly don't want to piss on anyone's firework, I may well have to spit on a few sparklers.

(Fuck me, that was a great expression. I should write this stuff down.)

Right. Pay attention. Because I'm bored of correcting you lot and answering the same questions over and over. Read carefully. There may be an exam. There will be bullet-points.

The current situation ...

• My previous R-chop chemo has failed.
• It is suspected that I am showing Hodgkins and Non Hodgkins lymphoma at the same time.
• It is suspected that the Hodgkins cells are the ones that responded to chemo.
• The non-Hodgkins cells are basically chemo-resistant and will ultimately kill me if not treated.
• The Pain that I frequently talk about in my side, is not adhesions, but a new tumor growing where my spleen was.
• I have new cancer lumps in my chest and other parts of the upper body.

The plan ...

• I will have to undertake two 5 day 'in-house' chemo treatments.
• The new chemo is called R-ESHAP. You can read more about it here.
• Each treatment is performed continuously for 5 days. I will live on a ward, but not in isolation.
• After treatment One there will be a 3 week interval.
• I will then spend another 5 days in hospital having treatment Two.
• I will then wait another 3 weeks.
• Another CT/PET scan will then be taken to compare with the most recent one.
• Please understand this: R-ESHAP will NOT cure me. It is designed to hopefully put the both types of chemo into remission, so stem-cell treatment can begin. More on that in a moment.
• I will only have the Two treatments, regardless.
• There is a "40 to 50 percent chance" that R-ESHAP will reduce all types of cancer and put them into remission. Or a 50-60 chance that it will fail, if you are a glass-half-empty kind of chap.
• If the scan results fails to show a "significant reduction" in ALL cancer and tumors, then we are at the giving-up place again. There are no more options. I write a Bucket List and a killer funeral playlist.
• If it manages to put all cancer into remission then (and only then) will I start the hell of the stem-cell bone marrow treatment, which will entail either using my own or donor bone-marrow and a long and difficult procedure at a top London cancer centre - the 'boy in the bubble' treatment that I spoke of before. I have no real details on that yet, but should we get through the R-ESHAP then I will be told more. 

So then, I'm afraid to tell you that we are going to be playing the 'waiting for the results' game again in about 10 weeks or so. The scan results after the two treatments will mean another painful wait for you and me.

Regardless, my path to full remission is a rocky one. Two solid weeks of chemo, a toss of a coin that it works and if I'm lucky then a final 'shit or bust' treatment that will come with it's own set of scary odds (that I don't know yet).

So, dear, dear readers. Feel free to celebrate and feel happy that today I got my life sentence suspended, but know that I'm only on bail and will be appearing in front of the judge again in about 10 or so weeks.

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Fuck me, this is one hell of a bog blog,huh? Top British drama, hard-hitting and full of cliffhangers.

I suffer for my art, dear readers, to keep you entertained and engrossed - as your lives are frankly too dull to be writing about.

I hope you're all enjoying the show.

If bored, go and flip some coins ... feeling lucky?