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: mini-allo
Recording my anniversary
I’ve not written a blog post for ages. Lots of stuff, both medical and fun, has happened and is happening. Nothing serious or life-threatening on the medical side, although the visit from the Critical Care Unit nurse while I was … Continue reading
Posted in * Myeloma, Fun, play & adventure
Tagged afternoon tea, allo, allogeneic, anniversary, Anthony Nolan, blog, blogging, campaign, Chatsworth, Haematology, late effects, London, mini-allo, NHS England, Paris, respiratory, RIC allo, SCT, stem cell transplant, Video, World Service Nottingham
8 Comments
Legs eleven…
No, I haven’t started playing Bingo! But I do have a new problem to report… it’s my legs… well, it’s my arms and legs… Since around April this year, all my limb muscles have become very tight and stiff. You … Continue reading
Posted in * Myeloma, Graft versus Host Disease
Tagged allogeneic stem cell transplant, Bingo, chronic GvHD, Ciclosporin, CK, CPK, Creatine kinase, Creatine Phosphokinase, Elizabeth Romhild, Graft versus Host Disease, GvHD, joints, Min Jeong Seo, mini-allo, muscle flexibility, muscle tightness, muscle weakness, muscles, myopathy, myositis, skin, statins, stem cell transplant, steroids, T'ai Chi, tendons, tight muscles
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A comic moment in clinic
Having written a fair bit about dying recently, and with another post to come on the subject, not to mention some more medical posts, I’d first like to share an amusing anecdote from life at Transplant clinic… When attending Transplant … Continue reading
Posted in * Myeloma
Tagged allogeneic, Dr Chris Fox, Dr Jenny Byrne, Haematology, mini-allo, Nottingham, Prof Russell, stem cell transplant, transplant clinic
3 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
Keeping my eye on the ball
One of the vulnerabilities for patients after a donor transplant is Pneumocystis pneumonia (PCP). According to Wiki: “Pneumocystis is commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak … Continue reading
Posted in * Myeloma
Tagged allergic reaction, allogeneic stem cell transplant, anaphylaxis, antibiotic, co-trimoxazole, immune suppression, immune system, immunocompromised, Leukaemia, mini-allo, mortality, nebuliser, PCP, Pentamidine, pneumonia, prophylactic, Septrin, stem cell transplant, sulphonamides, suppressed immune system
14 Comments
The transplant process starts here…
Last week I was in the Netherlands, where I found myself in a weird detached state, not able/wanting to fully interact with the people around me. This was partly due to spending a lot of time not understanding what was … Continue reading
“A walk in the park…”
These were the words uttered by my consultant a couple of weeks ago, in relation to my forthcoming allogeneic (donor) stem cell transplant… “It will be like a walk in the park compared to the autologous (my own cells) transplant.” … Continue reading
Posted in * Myeloma
Tagged allogeneic stem cell transplant, blood group, chemotherapy, chimerism, CMV, cytomegalovirus, DNA, donor stem cell transpant, Graft versus Host Disease, GvHD, immune suppression, immune system, immunocompromised, infection, irradiation, mini-allo, mini-SCT, MUD stem cell transplant, reduced intensity chemotherapy, rejection, suppressed immune system, total body irradiation
10 Comments
jet black living... 