Category Archives: Graft versus Host Disease

Blurred lines…?

Posted on Mon, 30 Jun 2014 by Jet Black

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!

Posted on Mon, 5 May 2014 by Jet Black

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

The sadness of so many losses

Posted on Fri, 21 Mar 2014 by Jet Black

I began writing this a couple of months ago but didn’t finish the draft I’d started. Today though I’ve been reminded again of the sadness of loss; it comes and goes with a regular dull rhythm. On this Spring Equinox, … Continue reading →

Posted in * Myeloma, Death & dying, Graft versus Host Disease | Tagged anniversary, burial, cat, Critical Care, death, diagnosis, dog, dying, If that's all there is, Intensive Care, Leiber & Stoller, living, Myeloma UK, Peggy Lee, sadness, skin, skin GvHD, stem cell transplant | 21 Comments

A Letter to my MP

Posted on Wed, 19 Mar 2014 by Jet Black

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

Posted on Sun, 22 Dec 2013 by Jet Black

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

Ten things I learnt in Spain…

Posted on Sat, 14 Dec 2013 by Jet Black

For some light relief, let me share some of the challenges, joys and startling insights that I encountered while in Barcelona and Girona, in Spain for five days last week… 1. If I want to climb Girona‘s medieval … Continue reading →

Posted in * Myeloma, Fun, play & adventure, Graft versus Host Disease | Tagged 4 Non Blondes, Barcelona, Catalan, Catalunya, Dexamethasone, Domenich i Montener, dry eye, fashion, Gaudí, Girona, lung function, Maite Mer, Masó, Palau de la Música Catalana, pinchos, pintxos, Prednisolone, steroids, tapas | 12 Comments

Legs eleven…

Posted on Fri, 13 Dec 2013 by Jet Black

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

Category Archives: Graft versus Host Disease

Blurred lines…?

Infection alert!

The sadness of so many losses

A Letter to my MP

Bronchoscopy for lung GVHD

Ten things I learnt in Spain…

Legs eleven…

Dancing in the rain

I want to follow this blog

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