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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
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Fuuck
What was transplanted? Stay strong, hope you are on the mend soon.
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Hello fella,
Sorry I missed the message earlier in this thread; clearly for you and I it’s been a testing summer...
Glad you’ve still got your sense of humour, and continuing to be dogged in your approach too. Being right in your head is half the battle, and although I know there are inevitably times when you’re on the floor emotionally, I’d wager you’ll be fighting throughout.
Like you, it’s all a bit make or break for me now. Finished six months of chemo 8 weeks ago, but within two weeks felt something wasn’t quite right - bowels weren’t working, abdominal pain, lack of hunger. Lo and behold, found out yesterday the beast is back with a vengeance.
Chemo starts again next Friday, and two months of radiotherapy from Monday. No time to recover from the last lot, feel rough as hell, only enough money for four more treatments at this point; whilst I like a challenge in life, I’m wondering who I pissed off in a previous one....
However, fucking well cycled up Ventoux a week and a half ago, so I think my annual membership to the Hard Cancer Bastards Association might have been automatically renewed this year....
Keep going fella. Don’t stop going.
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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.
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That’s really great news! Keeping everything crossed for the next few months and hope you’re back on the bike soon!
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Just hoping you are doing ok now.
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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.
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Good news glad your still around
dancing james
mi7rennie
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Dammit
Rich_G
JB
Bullheart
LeChef
MrSweary
almac68
Aroogah
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About
Lymphoma Hat-trick. RIP Rowhan
Posted by
@Rowhan
@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!