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@Señor_Bear too late to claim whatever it was you were going to send me when I was in remission for all of 4 months? Sorry I never got in touch but life's been 1 squit short of a shower of shit

It is, but at this stage any chemo is just to "buy time" which could potentially be a decent amount of time..

Problem is the previous timing of almost 3 years between relapses has been blown out of the water.
Either the transplant chemo didn't wipe me clean which says "it" is now significantly more resistant to chemo, or my body isn't up to fighting it off for long now.

I was only disease free, if at all, for 3 months this time so potential outlook is - chemo for a mi th next week, cell harvest for rad new immunology trial in the US. Then a transplant or sorts somewhere in england and 4 weeks under 24hr obs.

Seems theres equal chances for the treatment to cure me, do nothing, or tear my body to pieces and attack all my organs.

If it does nothing my only option going forward is chemo for as long as it's feasible / my body can take it / it actually has any effect

I relapsed sometime in January...
Pet scan confirmed early last week
Biopsy results tomorrow or tuesday should tell me how long I've got / what my chances are.

I probably start palliative chemo in a week I expect

I just came on here with some unfortunate news... then found out Bullheart had died.

I thought things were bad enough already but this really is on another level :-(

I can't believe this... I just logged on to ask him how he was doing
Oh man...

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Cheers Señor Dov! - will message you as soon as I have a chance

Thanks everyone else and sorry I was AFK for so long but the last ~4 months kicked the livimg shit out of me, strained my mind body and finances to absolute breaking point, nearly killed me and just to top it off cost me my relationship

I've spent the last week starting up a youtube channel to start retrospectively documenting the last 6 years bit by bit. No experience of editing or recording (fuck me it's difficult with a 5yr old pc) and I'm struggling to talk clearly a lot of the time thanks to lasting radiotherapy symptoms but I'm hoping to properly find my stride and confidence and start making some really focused stuff on what the experiences have been like. Eventually I'll try making episodes on cancer like "How to" sort of stuff...

But for now there's mainly just thoughts while I'm on the turbo and the latest episode it all got a bit emotional... also my editing skills (lack of) definitely show 🤣

If anyone can give it a view I'd appreciate it. You might learn something or at the least get a bit of understanding about life with cancer. It's a work in progress anyway..

https://youtu.be/qTwEf95z-ZI

Sorry everyone, last 3 months were pretty bloody awful after the stem cell transplant in September and it slipped my mind to do a big update.
Had a ton of stuff to process and guess I've got a huge update now...
As of Thursday afternoon I'm officially disease-free and in full remission!

Think that should sink in roughly by the end of January or start of Feb maybe xD
Just 1-5 years of recovery to go now.

Also just 150km shy of my 10,000 target for the year after finding my legs again at the start of October. The pain from all the riding definitely helped wash away some of the stress and bad memories from this year.

Hat-trick complete.

Cheers everyone.

Well, kind of goes without saying the last 3 weeks (last 2 most of all) have been frankly hellish.

Strange that the first week when I was subjected to two of if not the most repellent, toxic medicines on the planet - Doxirubicin and Campath-1H.

6 days straight
2 x 4hrs a day...

That was the easy part, the going without sleep, and being poked stabbed and checked up on 6 times a day for observations to be noted.
The day after the final dose of Campath I had my transplant and still strangely I felt fine (relatively speaking).

It was the day after that the trouble started. Bleeding both ends, stomach cramps, total loss of appettite, a mouth and throat full of ulcers and blood blisters, blurred vision, almost continuous migraine, inability to swallow, clear my throat, eat and almost bad enough I couldn't drink...

....for 10 days. I've been through a fair bit in the past from shattered leg, to falling down concrete stairs, to landing face first on broken bricks bmx-ing.. but there's no exaggeration when I say the pain was a solid 10 for the first week.

Luckily the amount of Oromorph and paracetamol I was given took the edge off a little and had dulled my memory of the ordeal a fair bit and I'm about 90% recovered.

Better yet 6 days ago there were the first signs of my white cell and platelet numbers coming back very very slowly. The consultants wouldn't say anything for a few days because it could have easily all gone to pot as accelerate upwards... but as each day went by the numbers went up by a factor of ~3 and my white cell count is currently >10 from a starting reading of 0.08 on day one.

The transplant was a success!!

I'm not out of the woods by a long shot but I get to go home on Friday or Saturday after what's been the longest most tortuous 3 weeks I think I ever hope to experience.

Off home to eat normal food and get some epic sleeps in and gradually work my way up from walks to jogs to light turbo work for the winter. I might get to cycle again properly from next February!

Don't get cancer guys... it's not cool.

New stem cells from my sister, who thankfully was a perfect match

First time around it was my cells used to reboot my immune system, but clearly they were a bit fucked.

Well here I am, post transplant...

Isolation room on the 2nd Floor of St.georges... again. Exactly 2 weeks in as of starting this post.

I think my previous experience must have been so bad I mentally blocked the important details... or I just don't remember it properly, but long story short the chemo was a breeze. No vomiting, nausea even, appetite through the roof, as I've trained myself to do in these treatment situations. A very slight headache and racing heartrate in the final 2 days before the stem cell injections but nothing major.

Awesome, I thought... perhaps this'll be a bit easier this time as the cancerous masses left are minute this time after the tonsillectomy, radio and previous chemo..

WRONG.

As of Saturday night I started to rapidly develop acute mucositis on all soft tissue from gums, tongue, throat and stomach lining).
In a nutshell- all of that tissue has become ulcerated, bloodied, cracked, swollen and essentially any movement causes the kind of pain is imagine if you tried to drink crushed glass.

I've been fitted with a morphine pump, been okayed for Oromorph too and have codeine and paracetamol as backups but im on 6mg an hour, and its simply not touching the pain.

I've been assured it should start naturally easing off in a few days and be gone by next friday, but this has easily been my worst episode of physical pain ever.

I'm just trying to focus on the fact I've now got through a huge amount of shit in the last 7 months and in 2-3 weeks it could all essentially be over.
No more surgery
No more chemo
Never need radiotherapy again
No stem cell transplants or the depression and stress only an isolation room can achieve.

Just the final test yet to overcome - did the transplant succeed, and will it and my body get along or will they both work their hardest to kill me over the next couple of months.

I should know by Sunday evening if it's worked.. but if it hasn't, that's essentially my last hope used up.

End of the line, man. End of the line

@Bullheart not that I'd forgotten about this, but reckon you'd be feeling your relative best just before your next cycle? Might have to stick to luke-warm coffee or a juice by the time I've finished radio, but would be good to hear more about your apparent turnaround!

...oh and the last 2 weeks while I had radio, I rode 750miles.

FUCK. CANCER.

Right-o update time I guess.

Sorry sounds extra ominous... it's more because I'm writing this ad-lib and realise it's been a few months in which time a HUGE amount's happened.

Firstly, I'd wanted nothing more than to post a fortnightly update on the fundraising page so nobody would be left wondering about events, treatment, progress etc.. however it dawned on me at the end of April that I just had to assume the worst about how low the DWP et al might stoop to dismiss my benefits claims and investigate me for whatever reason they could find.

So, yeah, I had to go almost completely silent online. Only updating people on instagram with riding photos, hospital photos etc. I've had to change my Strava profile name for whatever good it might have done (it definitely confused a few people).

Not really sure which order to describe what I've had done to me, what I've got up to, how I've felt for the last 3 months, so it'll probably come out massively disordered but here goes.

As of the last post and a fair bit down to all the supporters who came out of the woodwork, I set myself a daft challenge - other than the week I had surgery, I rode all the way through chemo and subsequently all through Radiotherapy (try as I might, the effects of it fought back and have just caught up to me in the last few days).

I knew I only had until about now (when the radio fatigue and throat pain/dryness floored me) to get my fitness as good as physically possible pre-stem cell transplant. I aimed for 3,000km and have somehow cranked it up to 5,030 in exactly 3 months. I actually managed to average 97bpm riding back from radiotherapy yesterday and realised I'd finally made it, done all I can, all I need to do.
Feeling very good about how I'll likely deal with the transplant now. The week of ultra chemo is savage, strains the heart, lungs, brain, digestive system, mind... the works. If I'm still physically where I am now, then I should be good.

Anyway, a large part of the silly distance was to show everyone who's supported me that I wasn't lying down and taking this. I actually celebrated the end of chemo with an 800km week just to show "it" who's boss ;) The donation money has bought a LOT of essential coffees and gels, not to mention the brand new pair of 4000's I've just had to replace again. I basically wouldn't have been able to get myself in shape without the money for food and bike maintenance.

So... what next.. DWP still trying to fuck me over, financially I'm just about juggling it ok. Housework, given up on for now - it just doesn't happen. Cycling as of today - paused other than riding to and from hospital..
My sister's going to be my cell donor, so on top of going through a horrible break-up, is on a horribly strict healthy diet for the next 3 weeks while I'm sure all she wants in donuts and gin. ..
What else?...

Radiotherapy side-effects! Oh joy... 1st day, being fixed to a table by my face I had a full-blown panic attack. After that it was ok I guess. A very mild tingle during the 4 minutes of irradiation.. which went on in to the 2nd week. Happy days, I thought.. I'm one of the lucky ones who breezes through it.

WRONG
Thursday/Friday last week my energy levels suddenly dived to the point I was actually in pain all over. Then the dry mouth kicked in (high chance of losing my saliva glands and thyroid to this dosage). Imagine the feeling in your mouth/throat after the longest heaviest smoky boozy night out you've ever had - THAT, all day, all night. Nothing fixes it.
Also, as of this evening my sense of taste is on leave. I can only taste sweet things, and can't detect salt at all.

Think that's all the grim news I've got for now, but I can finish with a bit of good news at least. I'm off to a spa town on the Bay of Arcachon near Bordeaux with my ex in 3 weeks for camping, seafood and walks in the pine forest. Not sure how I'm going to cope with the journey or cost, but as my possible last ever holiday I'm going to make the most of every minute!

...by which I mean, IN. Obvs..

Anyone out tonight?

Might head up post ride on the bike, if anyone's going to be happy drinking outside. Won't be able to lock up though

Started chemo this morning. Fucking CHRIST I know how to have fun don't I?!

Bit of an improvement from last Thursday where I thought I'd been told nothing much was going to be possible. My consultant and I both assumed I was well in to stage 4a or 4b....

My PET scan on Wednesday from head to thigh came back with very clear results showing that there were "only" 3 tumours - 1 cluster on the left of my neck, one small one on the right and another very small one near the back. So, I'm not stage 4 but stage 2a, being one localised area with minimal spread.
Essentially it hasn't really metastasized but I had a CT scan yesterday afternoon for a black and white high def comparison and they're checking them over side by side today.

The good or bad thing about "it" being localised and much more manageable & easier is that they're insisting it's going to be chemo for 2 weeks followed shortly by 8 weeks of radiotherapy in 5 day groups and 2 day's recovery. The chemo has to work well for the radiotherapy to do the best job, then I have to manage to get through the radiation doses...

Once I've got through all of that I'll be getting a few weeks recovery, then as soon as I'm well enough again I'll be hopefully going on for a week of ULTRA high dose chemo again followed straight up with my 2nd stem cell transplant.

Assuming all of that goes to plan, I have to then get on to a very specific and highly experimental ground breaking new cancer vaccine trial which will push my (new) immune system to its limit while they train it to produce a very strong immune response to lymphoma cells...

It won't be easy to get on it, and it won't be easy to get to the stage where I'll be able to do it, but if I get through all of these stages there's a chance I'll never get this again.

To all the people who have managed to donate something to me, I've treated myself to a few things to help.
For the good days- new cycling mitts, bottles and a cap and potentially time to get some new padded shorts for pootling about.
For the bad days- a new PC game, a Netflix subscription, and some great noise cancelling headphones (only Sennheiser CX2.0G's but they're great for the money) to drown out the world and the ward.

Good thing, or again bad, about this initial treatment is it's just today and monday (different drug Monday though) then 2.5 weeks off. Plenty of time to rest, but plenty of time for the symptoms to escalate. Fear not though, I haz weed and a vaporizer. Thanks anonymous donor 😉 it should have any aches and pains, but it probably won't help with the long term change of taste and smell.

Never know, I might even get to enjoy a bit of summer at this rate but fucking hell it's looking like as much of a challenge as both previous times running in parallel.

3/4 of the initial chemo left
40 moderately high radio doses and the terrifying potential side-effects including permanent beard and tooth loss.
1 week of ULTRA high and a stem cell transplant from my sister....

Then who knows.
Got to get a near-perfect score on each of these bastard stages to have a decent long term hope.

One really important thing I've been told recently is that radio has an extremely high rate of successfully stopping ANY recurrence of cancer at the site it's treated. Just going to have to keep that at the front of my mind. Going to be one bitch of a ride

Just when I thought I was out....

........they pull me back in!

7 people
23 portions of chips
35 pints
1 dirty great steak
...and a totally unavoidable greasy smudge.

LFGSS lives!

Just ate a whole malt loaf on the walk back to the station 😉

Hopefully 7 till about 9 I guess. Depends on how much energy I've got left. Just waiting for my pet scan at the moment - 11hrs without food so far and need to get a ride in this afternoon.
Won't be riding up though

P.s. the UCLH treatment really sounds promising. Utterly horrific and risky, but promising. A few people are looking in to it at several places at the moment - just have to hope this eligible candidate gets one of their next treatment slots...

Cheers Bullheart. Coffee would be great at some point. Long overdue I think!
Re: donations - don't be silly! If anything I'll be chucking some your way if I can.

Macmillan have invoked legislation usually reserved for terminal patients, to fast track all outstanding benefits for the last 3 months and which should actually enhance those benefits. It should also get me the maximum enhanced PIP allowance for the rest of the year too.
They said they were doing it without hesitation even for the cases just deemed difficult at the moment in an effort to fight back against the powers the likes of Atos have been given.

Not to say I'm terminal anyway.... everyone is in one way or another 😆 but I just happen to need this trial to stay alive.

Anyway, sun's out, legs are shaved, coffees beckon. Think I'm off on the bike for a bit.

Fuck cancer.