Note about ‘100 days’

Over Easter 2016 I injured my hip doing some heavy lifting and the problem did not go away. I was cycling fine, but walking was hard and very gradually getting harder. My GP and physiotherapist were both baffled, an X-ray in July showed no problems. Finally, my physiotherapist recommended a cortisone injection into my sacroiliac joint that might solve the problem. This would happen on December 8. In the months prior I’d also had a few severe febrile episodes, one of which put me in hospital for a few nights. But it was the cortisone injection process which led to my myeloma diagnosis as the injection is CT-guided and it revealed (unlike the X-ray) the interior of my bones where many lesions were present. 

         In the middle of 2017, I was heading towards the final part of a year of treatment for multiple myeloma. The part I was truly dreading: an allogeneic stem cell transplant.

         A cancer diagnosis is devastating, but to discover that the cytogenetic disorder that comes with your particular version of the disease makes you ‘doomed within a year’, to quote one haematologist, was pretty tough. My doctors recommended a three-step treatment plan. Chemo, then an autologous stem cell transplant, using my own cells, both at the Royal Hobart Hospital, and lastly an allogeneic stem cell transplant conducted at The Royal Melbourne Hospital and Peter MacCallum Cancer Centre.

         Allogeneic transplants are risky procedures, only one in three are successful and one in five die during them, but I decided this was my only possible roll of the dice. In many ways I was lucky. All had gone well to this point, and with a sibling donor I was in the perfect situation for the transplant to succeed.

         One of the things I dreaded most, perhaps even beyond the risks of the procedure, was that I would have to spend 100 days far away from my wife and kids. I decided to keep a visual journal of the 100 days. I put pictures and sometimes words on a page every day. This kept me busy and fairly sane, but I also hoped it might be of some use to others facing the 100 days. I knew there was a real chance I might not return from Melbourne so the journal might also serve as way to explain my final days to my sons, who were only four and six at the time.