[SonnyParticipant]

Hi Tom,

Just wanted to wish you all the best for Mon, my husband had his SCT @ UCLH in Nov last year. I was probably a bit OTT with things but I bought a whole load of toothbrushes from the cheap discount store and made sure he had a new one daily ! Also packed baby wipes and Sudocrem but thankfully didn`t need them. He also found the small cartons of rice pudding, jelly etc very handy when he didn`t feel like eating much. You`ll have a small fridge in your hotel room so stock up on drinks. Make sure you eat your ice lollies when you have your melphalan, Sonny managed to eat 3 in all as he started before the staff were ready with his infusion, but he didn1t suffer with mouth ulcers !

[JacquieParticipant]

Good luck for Monday Tom.

My partner Geoff came out on Thursday after his SCT. he went in on 31 May out 12 June so quite quick.

regards

Jacquie & Geoff

[PeterJamesParticipant]

Hi Tom ( jnr)
Good luck on Mon with SCT , if you do as well with this as your harvest you are onto a winner
I found it somewhat strange watching the killer chemo going in , thinking there is now no going back
My advice would be to crank up your positivity to maximum & be relentlessly cheerful !
The key is mental strength & agility , so you should be ok !
On a practical front I went off solid food from day one ,so had lots of soup , ice cream etc
Re mouth problems ,I am convinced mine was mainly avoided by drinking lots of tea, I am not a tea drinker , maybe the tanning in it helped
We all feel off for a short time , but it soon passed for me , ditto hair loss , but who cares , it grows again , depending on how much you have at present !
I left the Christie on 1st Feb & now feel very healthy apart from two small leasions on my hip
Very much back to normal & determined to live a normal life on my terms
One last piece of advice , I took loads of pyjamas , one lot for nights & posh ones to entertain during the day , pyjama trousers can be lowered in a milli second , try that with ordinary trousers , mark my words !
All the very best
Peter
( snr )

[MothasParticipant]

Thanks John, yes please raise a glass of beer for me as I wont be able to have one for a while.

[MothasParticipant]

Sonny thanks for the tips, I'm all ready to go Mephalan tomorrow, stem cells back on tuesday.
Sort of looking forward to checking into the UCLH hotel…. 🙂

[MothasParticipant]

Ha, ha, yes i've packed plenty of pyjamas peter. I'm all ready to go and will be updating on the site.

[wendyduffieldParticipant]

Good luck with it all Tom, it is all a bit of a non event the first week from what I remember. I'll be thinking of you

Wendy

[HelenParticipant]

Yep good luck for tomorrow Tom, I had my melphalan on Monday, cells back Wednesday, home Thursday Friday, back in when became quite ill on Saturday to Wednesday week then home and slow recovery. Just lie back and let it ride. There is a lot of thinking time.
Love Helen

[MothasParticipant]

We're not allowed to swear on this site so this will have to do £$$$@@@**!!??.

so I go in today, have the picc line fitted, wait for the doc to give me the go-ahead for the melphalan. I'd already 'checked into' the UCLH hotel.

I then get called into a side room and told unfortunately there had been a mistake with the preservative in the lab and my 8.7 million stem cells were unusable. I will now have to go through stem mobilisation and collection all over again.

I didn't weep but I could of.

Back at home really p&%%%% off.

[meganjaneParticipant]

Tom,

I am so, so sorry to read this, there are just not words for it. Like it all isn't hard enough.

Megan

[HelenParticipant]

Dear Tom,
I feel like weeping and swearing for you! How dreadful for you, after all the psyching up and preparation these setbacks reach monumental proportion ( i had my cyclophos priming cancelled at 1 hours notice, not in the same league by any means but enough to cause me to wonder just what could happen next) and did they say how? The only saving grace here is that this was discovered before you had the Melphalan, but that is little consolation, have they said when you have to do this again?
I suppose all you can do is wait and see what they say and in the meantime keep swearing if it makes you feel better.
Love Helen ( currently feeling ashamed on your behalf to be working for the nhs:-( )

[jmsmythParticipant]

Dear Tom

Swear as much as you like !! What a terrible thing. Franks Melphalan took 4 days to come up and we thought that was bad but what's happened to to you is awful. As Helen if you want, keep swearing if it relieves some of the tension. When will it start over
Love Jean xx

[tonyfParticipant]

I am so sorry to read this, what a dreadful thing.
Still there is one good thing, after all that nonsense you'll probably get the regal treatment in future.
Best of luck in the future.
Regards
Tony F

[MothasParticipant]

Dear everyone thanks for the sympathy.

As Helen points out at least they found me before the chemo.
I'm due to start mobilising injections this week with collection next Monday. Great joy.

I don't blame the NHS, sh*t happens, apparently it was a whole batch of folk not just me..

At least I know what's coming and hope to avoid hospital this time..

Thanks again for the collective wisdom.

T.

[SonnyParticipant]

OMG I cannot begin to imagine how you must be feeling right now, what exactly happened to your cells, did they explain to you ?

Ann x

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