Dancing 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: remission
Myeloma UK Clinical Trials
From time to time, I receive email updates from Myeloma UK, covering a variety of topics. To be honest, usually I take a brief glance and delete them without further ado. I tend to leave the medical stuff to the … Continue reading
Posted in * Myeloma
Tagged clinical trial, Clinical Trial Network, myeloma, Myeloma UK, refractory, relpase, remission
12 Comments
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
Travellin’ shoes
Norway was amazing. My worries and anxieties came to nought in the end. I was never cold and only fell over once, in lovely soft snow. All the gear I bought did exactly what was required. Ice grippers are a … Continue reading
Posted in * Myeloma
Tagged anxiety, confidence, Dexamethasone, fatigue, Graft versus Host Disease, GvHD, holiday, kidney impairment, pre-existing condition, remission, steroids, travel, travel insurance, vacation
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
It’s working!
This is just a quick post lest I forget to mention it… I kinda took it on the chin, but perhaps we should be shouting about it… I’ve been having blood tests since I first heard about the relapse, with … Continue reading
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