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
Facebook groups
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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
Category Archives: Graft versus Host Disease
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
Infection alert!
Friday morning, 4 April, saw me not-quite-leaping, more like cautiously rolling my stiff self, out of bed at an early hour to go off to volunteer at a Register & Be A Lifesaver [R&BE] stem cell register recruitment event at … Continue reading
Posted in * Myeloma, Graft versus Host Disease, Other health
Tagged Anthony Nolan, antibiotic, Certificate in Playback Theatre Practice, Chellaston Academy, Derby, endocarditis, Fletcher ward, Flucloxacillin, Haematology, Hickman line, hospital, infection, IV antibiotics, Jenny Parrish, myeloma, Nightstop, Nottingham City Hospital, osteomyelitis, Playback, Playback Theatre, pneumonia, R&BE, Register & Be a Lifesaver, School of Playback Theatre UK, Specialist Receiving Unit, SRU, staph. aureus, staphylococcus aureus, stem cell donor, stem cell register, temperature, Vancomycin, volunteer, volunteering
6 Comments
A Letter to my MP
I have a problem… not medical this time, but financial… I began receiving Disability Living Allowance [DLA] when I was first diagnosed three years ago. The initial period for the welfare benefit was for three years, after which time I could … Continue reading
Posted in * Myeloma, Graft versus Host Disease, Miscellaneous
Tagged Anna Soubry, Benefits Advisor, Broxtowe, Department for Work and Pensions, Disability Living Allowance, Disabled Blue Badge, DLA, DWP, Employment Support Allowance, ESA, finance, Maggies Centre, Motability, MP, Personal Independence Payment, PIP, Welfare Rights
18 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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