For anyone stumbling across my blog who doesn’t know the history, here’s a potted version, so you don’t have to read the whole story from Day 1, but please feel free to do so if you want more details. I will include a link to the first post relating to each dated step.
July-Dec 2010 – middle back pain, loss of appetite and taste, constantly tired. (https://jetblackliving.wordpress.com/2011/02/16/first-a-bit-of-history/)
Dec 2010 – ill with presumed virus. Blood test at doctor’s surgery.
Jan 2011 – diagnosed with severe kidney failure. Urgent referral to renal consultant. Weekly blood tests to find cause. Appetite and taste almost non-existent. Unable to work or do very much at all. Weak and tired (unaware of being anaemic).
Feb 2011 – diagnosed with hypercalcaemia (which explained appetite/taste problems). Admitted to renal ward for treatment. CT scan and bone marrow biopsy.
4 Feb 2011 – diagnosed with multiple myeloma. Started on Dexamethasone (steroids). (https://jetblackliving.wordpress.com/2011/02/17/drugs-just-say-no/)
7 Feb 2011 – start Myeloma XI trial. Start initial treatment of Revlimid, Cyclophosphamide and Dexamethasone [RCD]. (https://jetblackliving.wordpress.com/2011/02/20/cocktail-anyone/)
Feb-May 2011 – four cycles of RCD. Complete Remission! (https://jetblackliving.wordpress.com/2011/05/17/mixed-feelings-and-good-results/)
Jun 2011 – Hickman line inserted, high dose of cyclophosphamide and GCSF injections to promote new stem cells in the blood. (https://jetblackliving.wordpress.com/2011/05/27/date-changes-details/ and https://jetblackliving.wordpress.com/2011/06/20/hickman-line-insertion-maybe-not-for-the-squeamish/)
Jun 2011 – stem cells collected – 5 million! (https://jetblackliving.wordpress.com/2011/07/06/a-harvesting-we-go/)
Jul 2011 – hair loss and shave (https://jetblackliving.wordpress.com/2011/07/21/a-weekend-of-surprises/ and https://jetblackliving.wordpress.com/2011/09/20/loss-and-liberation/)
2 Aug 2011 – autologous stem cell transplant (https://jetblackliving.wordpress.com/2011/08/02/just-a-quickie%E2%80%A6/)
25 Aug 2011 – admitted to hospital with an infection (https://jetblackliving.wordpress.com/2011/08/26/tue-fri-sct-days-19-22/)
Sep 2011 – Complete Remission! Randomised for Revlimid as maintenance on Myeloma XI trial (https://jetblackliving.wordpress.com/2011/10/18/long-time-no-write/)
Oct 2011 – start taking Revlimid (https://jetblackliving.wordpress.com/2011/11/02/the-next-stage-maintenance/)
Dec 2011 – start programme of re-vaccination for polio, diptheria, tetanus, etc. (https://jetblackliving.wordpress.com/2011/12/20/not-only-but-also/)
Jan 2012 – relapse! (https://jetblackliving.wordpress.com/2012/01/22/devastated/)
Jan 2012 – new treatment regime: Velcade & Dexamethasone (https://jetblackliving.wordpress.com/2012/01/31/next-line-of-treatment/)
Mar 2012 – Complete Remission!(https://jetblackliving.wordpress.com/2012/03/28/its-working/)
May 2012 – allogeneic (unrelated donor) stem cell transplant (https://jetblackliving.wordpress.com/2012/05/11/a-walk-in-the-park-2/ and https://jetblackliving.wordpress.com/2012/07/16/stem-cell-transplant-details/)
Oct 2012 – 100% chimerism achieved and Graft versus Host Disease [GvHD] starts (https://jetblackliving.wordpress.com/2012/10/02/i-am-now-a-chimera/ and https://jetblackliving.wordpress.com/2012/10/23/me-and-my-big-mouth/)
Nov 2012 – six months post-transplant (https://jetblackliving.wordpress.com/2012/11/26/six-months-on/)
Dec 2012 – began promoting stem cell donation for Anthony Nolan (https://jetblackliving.wordpress.com/2012/12/01/shabbat-shalom/)
30 Dec 2012 – admitted to hospital with an infection – over New Year! (https://jetblackliving.wordpress.com/2012/12/30/just-when-you-think-its-safe/)
Feb 2013 – took my first holiday abroad since the transplant (https://jetblackliving.wordpress.com/2013/02/04/nothing-to-worry-about/ and https://jetblackliving.wordpress.com/2013/02/23/travellin-shoes/)
Mar 2013 – recovery from stem cell transplant continues well. Complete Remission! 100% chimerism, mild GvHD and lessening frequency of clinic appointments, bar a minor scare (https://jetblackliving.wordpress.com/2013/03/06/overdue/ and https://jetblackliving.wordpress.com/2013/03/28/minor-scare/)
May 2013 – began experiencing muscle/tendon tightness, which was only recognised as Graft versus Host Disease in December 2013 (https://jetblackliving.wordpress.com/2013/12/13/legs-eleven/)
16 May 2013 – celebrated the one year anniversary of my allogeneic stem cell transplant (https://jetblackliving.wordpress.com/2013/05/21/joyeux-anniversaire-a-moi/)
11 Jun-3 Jul 2013 – took my first proper summer holiday since initial diagnosis (https://jetblackliving.wordpress.com/2013/06/12/vacation-rules/ and more posts to come)
Dec 2013 – lung function had dropped over the past 18 months. Along with the muscles, tendons and skin problems, I am prescribed steroids for GvHD (https://jetblackliving.wordpress.com/2013/12/14/ten-things-i-learnt-in-spain/)
Jan 2014 – began extracorporeal photopheresis [ECP] treatment for GvHD
Feb 2014 – had a Hickman line fitted for ECP treatment because the combination of my veins and the skin GvHD made it difficult to access my veins.
Apr 2014 – Admitted to hospital with a high temperature. Staph. aureus infection discovered and treated with IV antibiotics. Hickman line removed. Discharged from hospital after eight days.
Jun 2014 – Hickman line fell out!
Feb 2021 – Ten year anniversary of diagnosis. #imasurvivor
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