Myeloma: I am ready to enjoy each day more
A couple of years ago, Professor Alan Mackay-Sim described himself as a very healthy, athletic 64-year old non-smoker who was looking forward to an active retirement with his wife, Lisa.
Little did the 2017 Australian of the Year know he would soon need his own stem cell transplant to deal with the myeloma lurking in his body.
“While I knew all about stem cells in my profession, when I became a patient I felt the same shock and anxiety, and experienced the same steep learning curve as anyone else,” Alan, Director of the National Centre for Adult Stem Cell Research at Griffith University in Brisbane, said.
“It may have helped me to understand the biology of stem cells as I spoke with my haematologist, but I certainly found myself swapping between science nerd and grieving patient as I struggled to come to terms with my diagnosis.”
In fact Alan described himself as a “complete newbie” to myeloma when he received the shocking news.
“I was cycling 200km a week and my grandparents and parents had all lived into their 80s and 90s; a life-threatening illness was certainly not on my radar.”
“In hindsight, the first myeloma symptoms began around two years ago when the muscles around my spine were unusually sore after some longer bike rides. I just put it down to getting older and a massage generally seemed to ease to pain.”
“One massage, however, really increased my pain when a young, enthusiastic physiotherapist, without realising it, was pushing around my ‘crumbly’ bones’ – a side effect of myeloma.”
The trip that made me realise something was wrong
Alan said his deteriorating health came to a head when he went overseas to attend two conferences in Florence and Brazil, and visit family in Colorado.
“My GP armed me with pain medication before my trip for what we still both thought was a ‘bad back’ that I would attend to when I returned. During the trip I decided to take a jet boat ride at the magnificent Iguazu Falls in Brazil. Although it was an amazing experience, every bounce of the boat sent shooting pain through my back.”
Alan said when he finally got home after a “horrible” flight, the pain was terrible and he immediately sought medical attention. Halfway through these tests, Alan’s health took a turn for the worst and he ended up in hospital with kidney failure, close to death.
By the end of that week Alan was stabilised and he received the news that he had myeloma. Treatment started immediately and included radiotherapy and chemotherapy.
Alan said he felt very fortunate this part of his treatment went so well; he had no mouth ulcers or any of the other very common side effects.
He then moved to the next stage of treatment, an autologous stem cell transplant.
“Fortunately I was young and healthy enough to have a transplant, although that’s when treatment really became tough,” Alan explained.
“The chemotherapy leading up to the transplant was the worst time of my life. I lost 23kg and 9cm. I’m now shorter than my wife, and friends joke I could start a second career as a jockey.”
“Also, while I was going through treatment, I broke six vertebrae and ribs. I suddenly felt like a very old man.”
Alan described myeloma as a great leveller. “I have grieved the loss of innocence; I have had dreams shattered and sometimes I fear the gloomy path ahead,” he said.
“Pain has been a feature of this disease all the way through. I guess you could say I have learned a lot in the myeloma school of hard knocks and big shocks.”
But according to Alan, not all of those lessons have been bad.
“I have learned about kindness. When the enormity of myeloma, pain and chemo overwhelmed me, I depended on the loving kindness of others: family, friends, work mates and especially nurses that comforted me night and day.”
Looking to the future
Alan completed our free Fit to Thrive exercise program in 2015 which helped him get back on his feet. He now describes himself as a reasonably healthy, not so athletic, 64-year-old bloke who is still a non-smoker, healthy eater, and keen bike rider.
“I just happen to have myeloma still lurking somewhere and I’m coming to terms with the great uncertainty of this. I am excited to say I am riding again. I bought a tricycle with electric-assist which allows me to ride without fear of falling.”
“I have officially retired although I still run a laboratory and have some PhD students finishing their studies.”
“Like last year, I am still a man in his early 60s looking forward to an active retirement – the difference is I am ready to live each day and enjoy it more.”