[gcParticipant]

Hi.
Sorry you have had to join this community but you will get a lot of help here.
I’m almost 100% sure there is a Maggie’s Centre- in Edinburgh- they are usually near or in the grounds of the hospital. I go to the one in Dundee.They are really helpful both with practical and emotional help.
I hope you get home and get the help and treatment you need ASAP.
Take care.

[gcParticipant]

Hi. I’m quite relieved to read yiur post but that’s probably not much consolation to you, sorry.
I am at Day 75 post transplant. I have lesions in my back and compressed fractures so was in considerable pain before transplant.
I too still experience bone pain though it is much less severe than it was and tends to be more intermittent. My bone pain increases after my Zometa infusion.
I’m due at the day clinic at hospital tomorrow for the bone drip and will see the consultant too. He does check up on my pain levels and mostly the pain is reasonably controlled by drugs.
I know everyone is different as Myeloma is such an individual disease.
I hope you get some answers from your team at your hospital. I would keep reporting your pain.
Take care.

[gcParticipant]

Hi
I found the following useful (apart from the obvious)
Pyjamas rather than nighties, easier to get access to your Hickman/ Pic line
Joggers and button up blouses (sane reason as above). I found it good for my own morale to be dressed every day.
A handheld mirror
Puzzles- easy peasy ones
Magazines
Books with very little plot.
Pen and paper,I wrote to folk, less tiring rather than always speaking on the phone. Also useful for writing lists for my husband as my brain was mush.

I was in hospital a full 3 weeks. I was amazed at how the time passed. I didnt have access to a TV but I used my phone a lot to listen to podcasts and BBC Sounds. My concentration was poor. In other places/posts on the forum you’ll find good tips about sucking ice when you get the high dose chemo. I managed 12 ice lollies one after the other- really dont want to eat one again- but it worked. I had no problems with my mouth.
I’m now at day 75 at home plodding onwards.
I wish you well with your SCT and hope all goes well for you in hospital. I didnt discover this forum until I was home otherwise I might have used it while I was in hospital.
Take care, Gillian

[gcParticipant]

Hi. I just came across your post. I was diagnosed in January 2023 and am also on a clinical trial. I’ve not long had a stem cell transplant.
On several occasions I’ve had low potassium. I dont really know why. At one point I was told my electrolytes were disorganized- which didnt help!
I’ve had potassium via a drip twice and yes it does take a long time. I’ve also had potassium tablets which are dissolved in water. My ankles also swell but that has been an ongoing intermittent issue since diagnosis.
I’m sorry I’m not much help as I dont understand all the reasons for the things that happen. My experience has been very much that there seems to be ongoing “things” that happen. Everyone is different but my way of dealing with that is to just deal with it as it happens.
I hope your husband finds that the treatment is helping him and that you too can find your own way through this. It’s difficult when you’re world has been turned upside down. As I said Im sorry I only just read your post but I’ve found the forum a big help- even just reading. Take care.

[gcParticipant]

Hi, this is so helpful. I’m going into hospital on Monday for my SCT. I’m getting my line fitted on Monday then things will happen after that. I’m trying not to think too much about the big picture! Things like this however I can worry and deal with.
I had my stem cell harvest done via a canula in each arm which worked well.
Just wondering, during SCT how much time you were able/ allowed to be dressed in your own clothes during your hospital stay.
I spent 3 weeks in hospital in January when I was diagnosed and always felt much better if I was up and dressed!
Take care

[gcParticipant]

Hi. I’ve found it really useful reading this thread. If all goes to plan I should be having my SCT in a couple of weeks.
I’ve a question of a much more mundane nature!! Are button up pyjamas better than nighties and similarly blouses better than overhead t- shirts for when I wear my own clothes? Just thinking about wires and lines and things. Sometimes it’s easier to fret the small stuff when the big stuff is scary
Thanks

[gcParticipant]

I’m also on the trial. I made up my mind quite quickly to give it a go. I’ve finished induction. It was going really well until I caught Covid (again) and then developed a chest infection. Although I’d been really careful this taught me I really was vulnerable. However I recovered and treatment resumed.
I’ve had my stem cells harvested and providing the next round of tests are positive should have my SCT at the end of the month. I’m apprehensive about it but I’ve got this far so will just keep on going!
Good luck to everyone on this journey.

[Author]

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