Dancing in the rain
Anyone who thinks that only sunshine brings happiness has never danced in the rain...
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* Myeloma
- Myeloma Beacon : Independent, up-to-date news and information about myeloma, from the USA
- Myeloma blogs : A place to find other myeloma blogs, or even add your own
- Myeloma UK : Supporting people with myeloma and related disorders
- Myeloma XI trial : Information about the clinical trial I was on at the beginning of treatment
- Wendy : Living with Myeloma in remission, in Manchester, UK
Cancer
- Macmillan Cancer Support : Providing practical, medical and financial support and push for better cancer care
Donating
- Anthony Nolan : A UK charity that registers and matches potential stem cell donors for people with a blood cancer
- Be the Match : National Marrow Donor Programme, in the USA
- Give Blood : If you’re generally healthy and aged 17 or over, do something amazing!
- Nottingham Marrow : A student group recruiting people to the Anthony Nolan stem cell register
- Organ donation : A place to register as a donor – even as a living donor
- Register & Be a Lifesaver : A UK educational programme to raise awareness of blood, stem cell and organ donation
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Tag Archives: transplant
A pity party? No, a damn good myeloma party!
A pity party is one “in which you spend your time feeling sorry for yourself and whining endlessly about how crappy your life is.” (as defined by Urban Dictionary). It would be very easy and understandable for any of us … Continue reading
Posted in * Myeloma, Emotional health, Fun, play & adventure
Tagged anger, autologous stem cell transplant, birthday, blog, blogging, Bortezomib, CC Smugglers, celebration, clinical trial, devastation, Disco 2000, fear, fundraising, hospice, Jarvis Cocker, myeloma forum, Myeloma UK, pain, peripheral neuropathy, picnic, pity party, positive attitude, remission, smouldering myeloma, stem cell, stem cell harvest, stem cell transplant, stem cells, support, transplant, treatment, Velcade
8 Comments
Identity shift
On 16 April, I was eleven months post-transplant. That’s almost a year! And what a celebration I’m going to have for my one-year anniversary, on 16 May! But for now, I’m quite content with quietly appreciating how well things are … Continue reading
Posted in * Myeloma, Emotional health
Tagged allogeneic stem cell transplant, anxiety, appetite, back pain, disabled, energy, fatigue, identity, mini-allo, remission, responsibility, stamina, stem cell transplant, stronger, surrender, transplant, trust, Wales, work
13 Comments
The ‘C’ word
I’ve put off writing this post for a few weeks because I’ve been getting my own head around the ramifications, before sharing it with the world and having to deal with people’s reactions, as much as anything else. At my … Continue reading
Resting
I’ve been busy. I’ve been very busy. Although it may not seem like it, even to me, I’m doing a lot for someone at this point in recovery. And that’s the crucial point! It’s easy to think, over eight months … Continue reading
Posted in * Myeloma
Tagged anxiety, depression, fatigue, Sleep, stem cell transplant, transplant, volunteering, writing
23 Comments
Just when you think it’s safe…
It’s over 7 months since the transplant and I’ve been very lucky… 100% chimerism, undetectable myeloma, very mild GvHD and no serious infections. Until now… For the past three days I’ve had an increasingly painful sore throat, with a phlegmy … Continue reading
Rituximab
No, this is not a high-scoring Scrabble word. If it were, it’d be worth 20 points… 40 on a Double Word. If I managed to get the X to land on a Triple Letter, it’d go up to 72, plus … Continue reading
Posted in * Myeloma
Tagged cannulation, Dexamethasone, Graft versus Host Disease, GvHD, insomnia, IV infusion, Paracetamol, Piriton, Prednisolone, Rituximab, Sleep, steroid, transplant, transplant rejection
4 Comments
Six months on
16 November marked six months post-transplant, so time for a quick update. And it’s mostly good news… The frequency of my clinic appointments is going down, as is the number of drugs I’m now taking. When I first came out … Continue reading
Posted in * Myeloma
Tagged Aciclovir, allogeneic stem cell transplant, blood test, Budesonide, Ciclosporin, CMV, Difflam, Elugel, FBC, Fluoxetine, genital warts, GvHD, kidneys, Nystatin, oral thrush, Penicillin, Pentamidine, Prednisolone, Prozac, serum-free light chain, sore mouth, Tacrolimus, transplant, U&E
5 Comments
What happens next?
Although I’ve hinted, I’ve not yet written about what happens after this round of treatment on Velcade. Those of you with Myeloma or other blood cancers will know or guess what’s on the cards, but for the rest of you, … Continue reading
Posted in * Myeloma
Tagged allogeneic stem cell transplant, autologous stem cell transplant, Bortezomib, chimerism, donor stem cell transpant, immune system, Melphalan, mini-allo, mini-SCT, mustard gas, proteasome inhibitor, radiotherapy, reduced intensity chemotherapy, relapse, remission, Revlimid, RIC, SCT, stem cell rescue, tandem, total body irradiation, transplant, Vellcade
10 Comments
jet black living... 