Hi, I’ve got my 100 day Post SCT apt soon and wondered if there are any questions I should be asking? Usually I have a long list of questions but I can’t seem to think of any this time
Really good questions about questions to ask. Perhaps something around fatigue, having a compromised immune system and socialising, any side effects you might be feeling, anything to look out for, anything you might want to do, any fears you might have. If you have the contact details for your CSN you might ask them for questions. I will keep thinking. Take care.
Thanks Erica, Fatigue is definitely something I will be talking about. A less important problem also is the fur I’ve grown all over my body! A lovely side effect of the immunosuppressants but I wondered if it would go away…
Is there anything you’d like to think about for the months ahead - travel, holidays, going back to work? What your follow up after this appointment will look like? How are you doing @goody, are you feeling well?
I think I would like to know if one day I’ll be able to go back to work( working with small children) or if I should consider changing career. I’m no where near ready to go back yet though as I’m still needing plenty of naps and although appetite is getting better it’s not great, still having to avoid certain foods as they make me sick. My joints are achy and I can’t go anywhere without a blanket and plenty of layers to keep me warm. It’s still early days so I’m hoping that things will get better .
Hi Goody, reading your last post it sounds as if you have a list of questions in those 5 lines and perhaps something around your newly acquired fur. Take care and let us know how the appointment goes.
Just thought I would update. I had my 100 day apt, all went fine. Had a few questions one being about the gradual release to my local hospital. They agreed to let me go to my local once a week and to Glasgow once a month aslong as I was having no issues. Then the next day I started to flare up in a rash and my mouth and throat has gone really tight. I’ve just recently come off my immunosuppressants. Will be speaking to the doc again on Monday but might have to go back to Glasgow if it doesn’t settle or gets worse. Every time you get a possitive something like this always seems to happen . It’s almost Christmas so glad I’ve got something exciting to take my mind off all of this!
Hi, let us know how you get on at the doc on Monday, please.
Doc has put me on topical steroids for now, so far the rash is getting worse and travelling down my legs. There’s no discomfort from it though. Mouth has settled. They will try a stronger steroid cream next then it might be back on the immunosuppressants and oral steroids unfortunately 🤷
Hi Goody, I don’t know what to say, but hang in there and keep posting how you are, we are here to support you.
So sorry to hear of your problems @Goody. It often seems like 1 step forward and 2 back. It’s a pity that you may have to return to not using your local hospital as much, but if Glasgow can solve your problem it is at least a solution of sorts. Hoping you feel better soon xx
How are you doing @Goody - sorry to hear your rash is getting worse but glad to hear it’s not causing you any discomfort. Recovery from a SCT can be slow, and you’re doing brilliantly! Take it as easy as you can, while also enjoying the upcoming festivities!
Doing ok although my mouth is hurting again. Will see doc on Monday. Trying not to think about it too much so I can just enjoy this Christmas! X
Thanks pisces, they were not lying when they said recovery was a bit like a rollercoasterx