Myeloma: My 100 day journal kept me sane
Renowned Tasmanian illustrator and animator Tony Thorne put his artistic skills to good use while undergoing treatment for myeloma, creating a 100 day visual journal chronicling his experience. The activity kept him busy and distracted him from the anxiety of being separated from his wife and kids for the 100 days following his allogeneic stem cell transplant. He will be sharing the journal in the hope of helping others facing their 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 there were many lesions.
“A cancer diagnosis is devastating but to discover that the cytogenetic disorder that comes with your particular version of myeloma makes you “doomed within a year”, to quote one heamatologist, 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 Mac.
“In the middle of 2017 I was heading towards the final part of a year of treatment for myeloma. The part I was truly dreading: an allogeneic stem cell transplant.
“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. And there are clinicians who will say an allogeneic transplant can cure this incurable disease.
“One of the things I feared most, perhaps even beyond the risks about 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.
“Thus far the allogeneic transplant has worked: I’m in complete remission as of day 200. But I have learned these things are never simple, even if you are doing “really well”. Since stopping the Cyclosporin immuno-suppression I’ve developed mild graft-versus-host disease. Changes in my complexion (to very red), a thickening of the skin inside my mouth, and weird rashes are some of my symptoms. There is no test for GVH. Haematologists tell me a little bit of GVH is good. It means the immune response is strong, banishing the myeloma. But GVH can also debilitate or kill you. So I’m hoping this continues as mild GVH.
“Other than these minor irritations I’m feeling good. I’m surfing, skateboarding, cycling, and about to return to full time work. Not bad for a bloke diagnosed with the most aggressive form of bone cancer 18 months ago.
“I’d like to thank the staff at 7b at the Royal Melbourne, and all those who helped me in day clinic at Peter Mac, and the ongoing support of the haematology department at the Royal Hobart. I really understand what an amazing public health system we have now, and it’s something we should all cherish. I’d also like to thank the Leukaemia Foundation who have supported our family in so many ways from the day I was diagnosed.”
The full 100 days Journal will be launched at a Leukaemia Foundation and Peter MacCallum Cancer Centre event in September. http://www.tonythorne.co/
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.