Hi Alan
Thanks for your post.
My close relative had radiotherapy on her back , braces for a while and the course of chemo. She was diagnosed earlier on this year after intense back aches (ironically works for a cancer charity).
She has just completed the high dose chemo and was in hospital for just under 3 weeks. For her the hardest part during her stay was the mucositis. However, antibiotics seemed to help.
Shes been home for almost 2 weeks and seems to be doing ok. She doesn’t have a partner so we decided to stay with her for a few nights initially which was all she wanted. She’s mobile but we help with shopping etc. She does feel tired and rests when needed, but also balances it with gentle exercise by doing local walks.
They don’t let you out of hospital after the stem cell transplant until your bloods are at a safe level. At the moment we are ensuring precautions are taken to minimise the risk of infection. So if she goes for walks, she wraps up well and wears a face mask…we’ve complied with all the advice in the neutrophil booklet regarding food prep etc. She also hasent seen her grandchildren for a while which is hard. As their immune systems are a lot lower (under 5) we don’t want to risk anything until she gets an outpatient appointment and gets an ok.
shes lost her hair which we were told would happen but is very difficult when it happens.
It all still seems very surreal. It’s also very hard to know what to say etc when your loved one is experiencing this. However, I’m just trying to listen and be there .
I don’t know much as its a learning process but there are lots of positive stories out there of people living for over 10 years . Kathy Guisti set up her own myeloma organisation after being diagnosed 15 years ago and is doing really well. Cheryl Boyce is another lady who travels regularly and is doing really well.
All the best.
