[CAZ1Participant]

Hi everyone,
Possibly a silly question, but as I am about to start the build up to stem cell capture starting on Feb 24th, and then will be having a gap between the collection and transplant, I was wondering what you did in the intervening weeks. The reason for asking is that as I have finished my initial CTD treatment,and am now coming out of the chemical 'fog' and beginning to feel more like my 'old' self,apart from my recovering broken leg that slows me down,I am trying to plan some structure to my life, rather than drifting. I know that I need to be as fit as possible, but any hints or tips that will help me prepare for the next bit? I have load of books sorted for the hospital stay, have my I-Pad to keep in touch , and have organised the grand 'shave off ' of hair as I know it's going to fall out! Oh, what fun!!
Carol

[HelenParticipant]

Hi Carol
I'm nearly 6 months post sct now, I was really well for a few days before the stem cell collection gcsf drugs started so had my hair styled short and went away walking, after the collection ( it took me about 3 weeks to recover from it, I was particularly slow!) I was again very well for about 10 days before sct so we went on holiday to France and did as much as possible, fitting things around the multiple appointments during the workup. We even threw a big party for family and friends as I felt better than I had for years.
As for the sct, much ice to suck during the procedure, lots of baby wipes or equivalent, many pyjamas, towels, pants, (or an efficient laundry supplier?) skin moisturiser, lip salve, radio, magazines as well as phone and iPad though I only ever listened to the radio as I wasn't able to concentrate on reading or writing. Hair tends to fall out around day 12-14, I kept the wispy hair that was left for a few weeks until I felt able to cope with cutting it all down to 1/2 an inch, I found losing my hair distinctly traumatic, even now it is only about an inch long.
Hope this helps
Helen

[tomParticipant]

Hi Carol
Good Luck with all it will be well worth it, think Helen has got you covered

Love Tom "Onwards ans Upwards" xx

[CAZ1Participant]

Hi,
Many thanks for your replies Helen and Tom. I'm actually feeling quiet good at the moment, but in a funny way miss the Thalidomide from the CTD as it helped me sleep! In an odd way I'm looking forward to getting on with the rest of the treatment, but not the potential dangers that go with it. It's also good to be forewarned that it can take a while to get over the STC. Like everyone says,this disease is different for each individual,and is such a bloody nuisance!
I'll let you know how I get on , although really I'd just like some time off so I can go and sit in our house in Spain and chill for a few days before the transplant, but have been told I can't go anywhere until months afterwards –so that's something to look forward to eventually, as well as all the other things I have planned to do. Have to be patient!
Carol

[tomParticipant]

Hi Carol
Yes you are correct when we have a plan of treatment we want it to start "Yesterday! lol

Just Brace yourself Carol and remind yourself often that it will be worth it.

I was months before I turned the corner from my SCT I used to count the "Good Days" see how long they would last, some not long 🙁 then suddenly I woke up and thought Gosh I feel good then I started to count the good days again and as they say the rest is History. well worth the effort.

Love and Hugs Tom "Onwards and Upwards" xxxx

[LyndaParticipant]

Hi Carol,
Just wanted to wish you luck for 24th February.My hubbie Pete will hopefully have his SCT April/May so I will watch out for your posts.It does sound an awful lot to go through but just keep thinking it will be worth it and you will be that much nearer to going to Spain!!!
Lyn

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