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: GvHD
I’m a Survivor!
“The meaning of life is just to be alive. It is so plain and so obvious and so simple. And yet, everybody rushes around in a great panic as if it were necessary to achieve something beyond themselves.” – Alan … Continue reading
Destination: Cure – “it can only grow from here”
In July I attended a Reception for the All Party Parliamentary Group on stem cell transplantation at the Houses of Parliament. This is a group of MPs who support, campaign around and are interested in stem cell transplants, at a … Continue reading
Posted in * Myeloma
Tagged A Road Map for Recovery, All Party Parliamentary Group on stem cell transplantation, allogeneic stem cell transplant, Anna Soubry MP, Anthony Nolan, APPG, blood donating, Bone Marrow Registry, David Burrowes MP, Delete Blood Cancer, Destination Cure, Graft versus Host Disease, GvHD, Houses of Parliament, stem cell register
1 Comment
Relatively normal
Oh my goodness, how long has it been since I properly wrote anything here? Those of you who are distant strangers may well have feared that I was no longer around. I am! I am still very … Continue reading
Posted in * Myeloma
Tagged Aciclovir, allo, allogeneic stem cell transplant, anxiety, auto, autologous stem cell transplant, Azithromycin, Becotide, Cancer, Chondroitin, cramp, ECP, extracorporeal photopheresis, Glucosamine, Graft versus Host Disease, GvHD, Imatinib, joint pain, lucky, lungs, normal, Omeprazole, Penicillin, Prednisolone, respiratory, scleroderma
18 Comments
Blurred lines…?
So, with my new resolve to write shorter, more frequent posts, here’s the next one… My Hickman line half fell out on Friday 13 June. I don’t believe the date was to blame. I do wonder though, if perhaps nurse … Continue reading
Posted in * Myeloma, Graft versus Host Disease
Tagged amnesia, anchor, Bed Manager, Brighton, cannula, cannulation, central line, Cetirizine, chronic GvHD, Cluedo, conscious, cuff, Daycase, diarrhoea, ECP, extracorporeal photopheresis, GvHD, Haematology, Hickman line, infection, infection risk, lumens, lung GvHD, mosquito bite reaction, nurse, observation, PICC line, Piriton, radiologist, radiology, sclerodermatous GvHD, sedation, sickness, skin GvHD, SSSU, Surgical Short Stay Unit, The Ceramic House, thermometer, tubogram, unconsciou, vomit
3 Comments
Not normal
Friends, family, acquaintances, fellow cancer patients, the public at large see me running around, having fun, being busy, volunteering, travelling, visiting friends, driving a big fancy new car that I could not afford without a Motability lease, going out to … Continue reading
Posted in * Myeloma
Tagged abnormal, acceptance, Aciclovir, Alendronic acid, Azithromycin, dry eye, expert patient, eye drops, Eyebag, Fluoxetine, Graft versus Host Disease, GvHD, Lansoprazole, life, living, Lucralube, lung GvHD, Menopace Plus, Motability, normal, Nystatin, Omega 7, Penicillin, Posaconazole, Prednisolone, sclerodermatous GvHD, shiock, steroids, Systane Ultra, Vagifem
20 Comments
Drug dealing
Before I overwhelm you and me both with all that’s been happening medically in the last few weeks/months (if I ever get around to actually writing it up)… I’d like to share a bit of naughtiness I got up to … Continue reading
Posted in * Myeloma
Tagged allogeneic stem cell transplant, autistic, Cheers!, corset designer, drugs, graft, GvHD, Haematology, hospital corridors, Leukaemia, lymphoma, medication, naughty, needles, Nottingham City Hospital, pharmacy, sharps, STC, stem cell transplant, tablets, transplant clinic
9 Comments
Bronchoscopy for lung GVHD
Rather than trying to find the time to catch up and do things in the correct chronological order, I’m just going to post this now. A lot of health issues have gradually come to the surface over the past few … Continue reading
Posted in Graft versus Host Disease
Tagged allogeneic stem cell transplant, Amy Binnion, Andrew Fogarty, bacteria, Bronchoalveolar lavage, bronchoscopy, Cancer Research UK, cannula, cannulation, chronic GvHD, donor stem cell transpant, FEV1, fungus, Graft versus Host Disease, GvHD, infection, James Donaldson, knitting, lavage, Lung function test, lungs, SCT, sedation, virus
7 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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Dastardly diarrhoea
Yup, that’s today’s jolly little subject. Sorry folks! But at least you know what’s coming in advance. I’m not going to spring something on you that you weren’t expecting. This blog post will do exactly what it says on the … Continue reading
Posted in * Myeloma, Other health
Tagged allogeneic, Budesonide, diarrhoea, Dioralyte, Entocort, Graft versus Host Disease, gut GvHD, GvHD, Imodium, incontinence, stem cell transplant
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jet black living... 