bradders myeloma patients may not have a response to the vaccination even double jabbed as I know myself and why I’m scared of covid With good reason. “ Hope you’re managing to keep some mental balance if you’re isolating away from others too.” Thanks @bradders i thought I would move the question here as it is important through the lockdown I decided to use our local cancer support charity to take advantage of all the therapies that were via zoom. This includes yoga, keep fit, relaxation, a coffee half hour chat I managed to lose 3 stone and keep myself mentally fit too. I have a small group of friends who visited and sat outside through cold and hot while I provided the coffee This continues and still part of my routine I’m happy being inside because I have made it that way. Anxiety about covid is stressful and I do what I can to limit that and I think I do it very well. I also have days that I wish covid was just a cold that I will be ok but I don’t stay in this moment it passes. You have to help yourself and put effort into being ok with your surroundings I love this forum and keeping an eye on you all I have to say I am doing ok
Did you know you locked the RIP thread @Ducbird ? It’s great you still have friends coming thru for you. I watched a great interview last week with a family of a sufferer, it was Alzheimer’s related but I think the theory follows any major life impacting disease, where Gordon McQeens daughter said one of the hardest things was seeing his friends disappear into the background. Not because they did t care, but often because they simply didn’t know what to say or how to act.
Exactly! people don’t know what to do or say that’s why I encourage an open dialogue in my case I’m still me I just have a friend tagging along called myeloma Myeloma doesn’t define me I’m still me. What I have found is while some people leave others enter your life. People naturally are inquisitive and that needs encouraging even with the harder questions Not everyone is like me either many are quite happy in their negativity too and that’s ok. With any friend who is ill just be you don’t change do what you normally would Some won’t ask for help so take food/drink a coffee a bit of cake a txt message Just simple kind things Wash their car Mow the grass Take some flowers
Thinking about this With Alzheimer’s the family could encourage said friends to put together a memory book so that they can sit and look through talk about memories, with the person going through this stage of life It’s involving everyone so we all have to make time for each other. I haven’t seen the interview The impact is it effects everyone around it’s the coming together that can make the difference
https://www.washingtonpost.com/health/2021/10/18/powell-covid-vaccine-immunocompromised-cancer/ A small highlight for Myeloma but a start Maureen Lipmans partner also had myeloma he passed away from covid complications this year
Sorry all and Ducbird. Just meant that she must stay careful, as Powell’s example showed. Again, no offence meant.
3.46am !!!!!!! Presumably the steroids keeping you awake. I always had a sleepless night after my dose of steroids the last time I was on chemo and expect it will be the same this time round as well. That was the worst part of the chemotherapy regime for me.
It was the steroids I sleep a couple hours then I’m wide awake When they wear off isn’t nice either Pain comes back your head gets dizzy and you shake
Chemo day almost second week down Steroids antibiotics and antivirals and my body now feels like it’s been squeezed together almost like a tightening of my muscles Ready for velcade later I’m starting to look like a patchwork quilt on my tummy with red injection sites No no pictures
When mum was on chemo I prepared that for her. I wasn't supposed to touch it it was so intensely poisonous. Is yours like that? I don't suppose it's all in one particular category. And, if you're going to be the 1st thing we see opening the forum, can you put on something a little less non-yellow?
My first time round I had thalidamide and it was strictly controlled and I had to sign to say I would be a responsible user. This time I only have steroids to decant out of the bottle. They are in their own jars so I just tip into glass for the two days I take them Chemo is by subcut at our cancer unit Velcade Tue/fri Then I have Daramumtub each Tuesday by subcut it’s a monoclonal antibody treatment errrrm not sure I have much yellow here
Hard not to say anything that isn't trite or maudlin; but you do inspire me. And, incidentally, pretty sure what mum was on was the solid precursor to 'Mustard Gas'. It's a bit vague as I've suppressed all that. You could borrow my DMs. If your steroids make your feet swell to size 9, anyway. That would be like grabbing victory from the jaws of da feet!
