[gcParticipant]

Hi everyone
I am due to go in tomorrow (Monday) for my SCT. I’ve read much on the subject here on the forum and found it incredibly helpful.
I was diagnosed with myeloma and I’m in the high risk group. I’m also on a radar trial so I feel as if I’m giving myself the best chance I can.
My team at the hospital are great….I soent 18 days there in January this year when I was diagnosed and have been attending the daycare unit ever since. As a result I am not going into the unknown.The bag is down from the loft ready to pack and I think I’m organised.
However I feel very apprehensive and jittery. What I’ve learned (if anything) about myeloma is you cant prepare, there always seems to be a ‘curve ball” at some point.
My biggest concern is my mobility. I’ve lesions and fractures in my back. Ive worked hard to keep and improve my mobility. It’s not great but I can get about and can walk short distances. I’m anxious that 3-4 weeks in hospital plus the recovery time after is not going to help
I would welcome any advice or shared experiences about mobility after SCT.Thanks.

[mulberryParticipant]

Best wishes for the SCT gc, i hope you’ve been told about the benefits of sucking on ice/ice lollies before, during and after your melphalan infusion. If you go really over the top with this, cramming your mouth and continuing despite it being uncomfortable, you have a very good chance of totally avoiding muscostis, which must be one of the nastiest side effects, it completely worked for me.
In terms of exercise, talk to the nursing staff when you arrive. You may find that for the first 5 days after SCT that you are allowed off the ward so that you can walk around, or that an exercise bike will be provided. I was allowed onto a little used corridor just off the ward I was on for the first 5 days.
Until I was neutropenic (day 9) I was allowed out of my room to walk up and down the ward and tried to do this a few times a day. In hindsight I should perhaps have done it hourly as I did get sciatica from so much sitting.
It will help you to get up, showered and dressed each day,if you possibly can, even if it feels an effort.
Once you get home you are likely to find it easier to exercise and to pace yourself. If you are lucky you could be home in as little as a fortnight. I was in overall for 3 weeks, because I caught a virus, but I “knew” (felt increasingly better hour by hour) I was over the SCT itself on day 12. Once home fatigue was my only problem and that felt better by day 37, much better by day 60 and by day 80 I was champing at the bit to get on with normal life.
It’s an interesting rite of passage for us myeloma patients, but really can lead to better things. I’ve now been over 4 years with no myeloma related health issues. Well worth 3 weeks in hospital!
Wishing you all the best, and access to a good fan in this hot weather!

[blobgobParticipant]

I had lesions and fractures all over my torso, when I was initially diagnosed, the worst being when I cracked my sternum after I had a “mega” sneeze! So every time I coughed or sneezed after that I screamed and everyone thought I was having a heart attack! I dreaded the next sneeze which often came on me suddenly.

But my lesions had all healed after 5 rounds of chemo (Velicade, Dexamethazone, Thalidomide) so when I went for my SCT I was feeling quite good and fully mobile, and sneezing without pain!

But withing 24 hours of taking my Malphalan, I was pretty much bed bound as I felt so weak, with a commode by the side of my bed, as getting to the loo was such an effort even though it was not far away. For the next week, I pretty much lay on my bed and watched videos, and snoozed a lot. But after a week I was able to walk out the ward, Kings in London, and things just got better and better from there.

[blobgobParticipant]

Apologies, I was in hospital for 2 weeks when I had my SCT not one, but I can’t see any way to edit my earlier message.

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