Dancing in the rain
Anyone who thinks that only sunshine brings happiness has never danced in the rain...
-
-
Recent Posts
Archives
Links
* 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
Facebook groups
Tags
- Aciclovir
- allogeneic stem cell transplant
- anniversary
- Anthony Nolan
- antibiotic
- anxiety
- autologous stem cell transplant
- blog
- blogging
- blood count
- blood test
- bone disease
- bone marrow biopsy
- Cancer
- cannula
- cannulation
- chemotherapy
- chimerism
- clinical trial
- confidence
- CPAP
- cycling
- death
- depression
- Dexamethasone
- donor stem cell transpant
- drugs
- dying
- fatigue
- fear
- Fluoxetine
- Graft versus Host Disease
- GvHD
- Haematology
- Hickman line
- immune suppression
- immune system
- immunocompromised
- infection
- insomnia
- Jewish
- kidneys
- Leukaemia
- light chains
- list for living
- living
- Maggies Centre
- Melphalan
- mindfulness
- mini-allo
- myeloma
- Myeloma UK
- Penicillin
- positive attitude
- Prednisolone
- relapse
- remission
- Revlimid
- SCT
- shock
- side effects
- Sleep
- Snoring
- stem cell transplant
- steroids
- suppressed immune system
- T'ai Chi
- total body irradiation
- transplant
- Velcade
- Video
- volunteering
- writing
- x-ray
- Zometa
Tag Archives: Graft versus Host Disease
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
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
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
Leave a comment
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
Leave a comment
Tender bits
Yes, I know I’m not supposed to write about this most intimate of subjects, but I’ve done it once, so I’m not going to avoid it now. And don’t think I wasn’t tempted, but if you know me, you’ll know … Continue reading
Posted in * Myeloma
Tagged aqueous cream, candida, cervix, clotrimazole, cryotherapy, dentist, dry skin, Duraphat, fatigue, fluoride, genital warts, genito-urinary medicine, Graft versus Host Disease, GUM, GvHD, gynaecology, herpes, HRT, menopause, mucous membrane, oestrogen, pessary, Prednisalone, swab, thrush, toothpaste, vagina, vaginal GvHD
16 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
jet black living... 