This topic contains 57 replies, has 25 voices, and was last updated by Kazzam2 11 years, 4 months ago.
Well here we are. On Friday night i was feeling very smug; the previous weekend I'd had my high dose cyclophosphamide and had felt a bit hairy for a day but not too bad; I'd also managed to administer the g csf injections all week without a hitch. Then Saturday came.
I woke with bone pain from hell, I'd been warned to expect it, but the pulsating intensity of it was something else. I just about managed to get through the day with a hot water bottle, regular codeine and many Hail Marys.
Woke up on sunday, pain had gone, but feeling suspiciously hot and nauseous. Temperature north of 37.7.
The out of hours doctor told me to head for my local A&E, so I scrambled together all my documentation and headed off. A slightly comical few hours then commenced where they obviously didn't know what to do with me so stuck me in an isolation room. The medical team came round and I convinced them to phone UCLH who on the spot got me transferred. Got checked into the Haemo clinic at UCLH and pumped full of antibiotics. The following monday was feeling slightly better and my temperature had dropped to 36.5. With no other symptoms present and good blood results they proceeded to harvest my stem cells and thankfully managed 8.7 million of the things. I was sent back to my isolation ward for another evening of observations and antibiotics.
I've just got back from hospital after rather gingerly riding the metropolitan line home in the rush hour. The docs think I had a very strong adverse response to the g csf but at least the managed to harvest. I might even be booked in for the return next week. Everything's happening really quickly.
Tired but good to be home…..
tom (junior)
Well done for getting through that Tom.
Yes, I can remember the harvesting process. I did my own gcsf injections too and like you had some amazing bone pain on the day the dear little stem cells all got chucked out of my bone marrow into the bloodstream.
I got enough bagged up for 2 SCT's in just one session, so thought it was all worthwhile in the end. Fortunately, I didn't get a temperature spike though.
It seems to be a case of "no pain, no gain"!
Having the actual SCT is a doddle compared to everything that's already happened!
Keep us informed…… 🙂
Hi Tom
Well done for collecting those lovely cells:-)
I remember this time last year, my mum went through all of this. It seems like ages ago. The bone pain she experienced was immense, she says worse pain than being in labour. Poor you for having a reaction to gcsf, but at least that's another hurdle jumped and cleared.
I dont think a&e ever know what to do with haematology patients, but my mum always welcomes the isolation room:-)
Hopefully, it won't be long until the transplant and then the road to recovery.
Love Ali x
Hey Young Man 😀
Well done on the collection and pleased you done ok with the pain 😀
The Return Young Tom will be a little bit rough but it is a well doable so keep strong throughout and please please use the moth wash like its going out of fashion, when bottle is empty they will replace it so don't worry, I must have used three bottles in 16 days Lol.
Well Done Tom and Good Luck
Tom Onwards and Upwards 😎
Hi Tom jnr.
That is the first hurdle over for you. Well done for that. Hopefully stage two will not be problematic. It seems I will be going for a second attempt at the SCT so just waiting for the dates. I'll be watching your progress with interest as I'm right behind you.
Keep fighting.
Scott
Well done Tom Jnr hope the next stage goes well and you and take Tom Snr (??) advice, use the mouth wash like there's going to be a famine:-) when Frank was going through SCT, Toms words would be in my head and every time he got out of bed I was handing him the wash. It worked not one bit of trouble.
Best wishes Tom
Scott hope all goes well for you
Love Jen x
Michele, Ali, Tom, Scott, Jen
Well it's on, I'm booked into UCLH monday to have my high does Mephalan and the stem cells back on tuesday.
They're doing it in ambulatory care so they put you up in the UCLH 'hotel' and which is right next door to the centre and you go in every day for monitoring. At about day 5 they take admit you.
thanks all for the kind words, and the mouthwash tip is engraved in my brain.
t.
Hi Tom…well done on your successful harvest…nothing seems to go straight forward with this damn disease 🙁 …keep up the good work and just to say that during my SCT in Jan 2010 I had severe mucositis and found the ONLY thing that work for my mouth was flat warm coca-cola (decoked my mouth and throat so to speak haha)…if it works good if not plod on with all the various mouthwashes (hoping you have no post SCT problems)….stay safe…Phil
The best of luck for your SCT Twm (Welsh for Tom, you are welcome to borrow it for the duration… but tom seems to work as well). 🙂
The idea of you 'gingerly' nursing your battered body home via the the 'metropolitan line' seems to me a stop too far… but I am glad that you are home safe and sound. 😎
Keep in touch over the next few weeks if you can ad we will follow you home… it will be sooner than you think. 😀
Regards
Dai.
Good luck with everything Tom, it will all too soon be a distant memory.
Hope it all works for you, just as it did for me.
Regards
Tony F
Hi Tom
Well done, another hurdle taken at an incredible pace, I remember that bone pain, I thought my ribs were going to fall out of my chest every time I tried to get up! Good luck next week, yep do the mouthwash thing, and take it very easy it can be punishing but you just have to lie there and think rest and pass the time, it's all doable!
Love Helen
Well young Tom you are a brave and super chap, i wish you all the very best and so hope that you feel stronger soon San xxx
Well done Tom, 8 million plus that's amazing.
Good luck with the next stage and keep us posted 🙂
Vicki and Colin x
Phil, Tony, Dai, Helen, San, Vicki and Colin
Again thanks for everyone's collective support and wisdom, I'm on and ready for monday!
I will update on the board, people can also get extended narratives on my website.
🙂
Good luck tom
I will be thinking of you the next three weeks
Its my birthday on the 22 I will have a pint
for you
JOHN
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