I've been absent from this forum for a while. Can't say for certain why, think I was overloaded and just fizzled out. I'm +81 SCT and itching like crazy. It was an autologous transplant, so not overly concerned about gvhd. It could be that hair growth has started kicking in properly, but I've popped an antihistamine to see how it goes. I have a bmt team appointment in two days anyway.
Well, what can I say? Made it this far. Recovery is slow, frustratingly so, but expected. I know I have this platform, full of people in the same or similar boat, but boy has it been lonely. Thing is, I have people around me. Problem is, my three people, mum (78), brother (57) and daughter (18), are all autistic and all have health concerns. In a nutshell, I'm bottom of the pile...or so it feels. Most of my time since diagnosis, which was back in December 2023, has been comforting and reassuring them that I (48) am doing ok, and not about to keel over. Due to the way their autism presents itself, if you say you have an ache or pain, it's a "me too!" kind of deal, yet none of them manage to get help for themselves and I tend to have to arrange it with doctors and other services, so I have been more busy than I should. I know they love me, and I love them deeply, but they don't express it and other emotions quite the same way and they tend to look at how things affect themselves before others. It's just how it is. Subsequently, it's lonely. You feel like you are just trying to be strong for others all the time, so yeah, exhausting too!!!
You know what I miss? I miss going out. I know I will be able to eventually, and thank god it won't be to just another medical appointment!! I had a chat with one of my team a couple of weeks back about some theatre tickets I purchased before I knew I had myeloma. Two shows, Hamilton and Wicked. Both at a beautiful but huge venue! The doctor was reluctant to give the okay for me to go. I am due to have my vaccinations in about three weeks and she thought it would be a bit too soon, -but- if the theatre could accommodate me, she'd give the thumbs up. I told her I was prepared not to go, and at that point she insisted I did and said she'd contact the theatre herself if need be. As it happens, she didn't have to. Wales Millennium Centre, you are brill. I get to sit in the techbox, behind glass, where I can see and hear everything without having another soul near me! I also miss driving. I can do little runs out in the car, so plan going to the beach soon now that the tourists have gone home. Dare I say I even miss shopping at places like Tescos? I will start doing some 10pm runs and see how they go too (naturally with doctors approval).
Not long after the SCT, I was fitted for a wig. No way was I going to have something that looked like it was off of the golden girls. I went to the salon a couple of weeks after I was released from hospital and made my choice. A rather sensible shoulder length number in coppers, blondes and browns...and a pink one. If you are going to wear a wig, might as well have fun with it eh? Now, if only my actual hair would start behaving...most of it is growing in fine on my scalp...literally fine, but nice, except for one patch about three fingers wide which is stubbornly not joining in with the rest of the follicles. Oh well! Hopefully it'll come back in time. Not sure what wig I'll go for on Tuesday when I meet the team....sensible? snazzy? or maybe I'll rock the wonky follicles..time will tell :D
Lastly, video games...thank god for video games, they work wonders...that is all :)
Hi GroguLove and it’s good to hear from you….. your post transported me back to day +81 post my second Allo SCT.
Day +81 would have been 10th Jan 2016. My diary says that I was just about able to walk up to the first lamp-post in our street using my 2 walking sticks and we were putting my wheelchair back to the hospital the following day… driving was another 3 months away for me 
The skin can indeed be very sensitive post SCT….. I did have skin GvHD….. it was not a pleasant experience.
I was fortunate in that I had family including our grandchildren around me…… I can appreciate the challenges you are having though.
Have you thought about a buddy?
Here are some links/info to Macmillan’s Buddy service webpage and a Link to refer (self or referring someone)
The referral goes to a central team before being allocated to the local area.
Keep on keeping on - you will get there ((hugs))
