“Today of all days, Jen.”

It had taken quite a bit of to-and-fro to arrange a time to speak with Des. He’s a busy man: playing golf, catching up with friends, enjoying concerts, and back in full time work after treatment for multiple myeloma. In short, living life to the full.

But the day we caught up for our phone interview all that had changed. He had just received news from his oncologist that his myeloma is surging again and that he needs another round of treatment.

“Are you sure you’re OK to talk with me today, Des?”

“Yep. No worries there, Jen. I’m keen for people to know what this is like.”

And so, Des talked.

“It’s surreal. I feel so good. I’m fit and healthy, I’m back at work, I look well, and I feel great. And one phone call can take that away,” Des said.

In fact, that’s how it was when he was initially diagnosed, too: Des was feeling fit and well, but treatment for another unrelated issue led to some blood tests being done, and a phone call that rocked Des’s world.

Those three words

Three words in that phone call changed Des’s life in an instant: “You have cancer.”

He was handed over into the care of the haematology department at Royal Brisbane Hospital — “amazingly smart people, Jen. So good at their jobs. They’re amazing!” — and the roller coaster ride began. Des commenced pre-transplant conditioning, then an autologous stem cell transplant, followed by the long road back to health after that.

Fiercely independent, Des was not one to ask for help, but the lengthy and gruelling nature of bone marrow transplant treatment meant that this was one time where he couldn’t get by under his own steam. “I felt guilty and embarrassed to ask for help, but I tell you those food and fuel vouchers Arrow sent really helped get me through.”

People need to be better informed

Des believes that people need to be better informed about the reality of bone marrow transplants, not just how hard it is on patients physically, but also how much pressure it puts on patients and their families in all sorts of ways over such a long period of time.

“It really knocks you around,” Des says. “I was saving up for an overseas holiday with my two sons, but the holiday had to go on hold and the money I’d saved went into keeping me afloat during the lengthy treatment. And I’m a lucky one: I have a secure job and I was able to access some help through my superannuation fund. I don’t know how people without that kind of backup survive. It’s months that you can’t work. Months. But the bills keep coming in. Mortgage repayments, water, electricity… all that keeps going. The bills don’t care that you’ve got cancer,  or that you have to now run two households because you have to relocate to a major city for treatment. I cannot thank Arrow enough for the support you sent.”

And it’s not just financial pressure that patients have to deal with. There is also, of course, the harrowing treatment itself and then the treatment-induced physical issues: rashes, upset sleep patterns, nausea, diarrhoea, brain fog, pain and pain management, changes to libido… Des wants people to know all those things, too.

Put pen to paper

When I asked Des how he coped with all of that, he said “I took my father’s advice and put pen to paper”.

Des kept lists of questions to ask his medical team, notes on their answers, worked through his finances and made a plan to re-build after his transplant. He kept records of his daily medication requirements and noted when he’d taken it to make sure he stuck to the protocol. All this ‘pen to paper’ gave Des something to hang on to and made him feel like he had some sort of control over what can be at times a chaotic and overwhelming journey.

Learn to let go

But there some things Des learned to let go of during his treatment, too.

“There are things in life that we all get caught up in. It’s not that they’re not worth thinking about, you know, like where you live or what job you have, or whether you should buy a new car or take a holiday. They’re all good things to work towards. But one thing that cancer does is it forces you to really think long and hard about who you are and what’s essential to you. It gives you clarity. Do I really care about this? Is that important to me? What can I let go of? For me it came down to just three things: my health, my family, my friends. That’s it. If I have those three things sorted, I’m good. Everything else is just extra trimmings.”

And what now for Des, given the phone call with the news that his myeloma has flared again?

“2023 has been a great year, actually. Apart from today, maybe. It really has. I’m back at work, I’ve been back on the golf course, I bought a motorbike… oh, the sense of freedom that bike brings! And I’ve got plans for that trip with my sons, though I guess that might now need to wait until 2025. And I’m looking forward to being able to find ways to help other people going through cancer and bone marrow transplants stay positive. I’m basically a positive person, but I experienced depression during the early part of my treatment. It was a shock. One phone call, three words, “you have cancer” and your world is immediately torn apart. ‘Am I going to die?’ ‘Why me, what’s this all about?’ ‘What about my sons?’”

I’d never experienced depression before, and I didn’t really understand it because I’ve always been so positive. But I understand it now. I was depressed for about a month, but I found a way out of it, by learning to look for the good in my situation. Everyone handles stress and trauma differently, but I’ve been lucky that my positive attitude survived. I want to be able to help other people find their own version of ‘looking for the good’.  I hope I can help others do that. I just want to be of help.”

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We’re glad that Arrow’s patient support program was able to help Des. If you’d like to help us support more people like Des, you can make a tax deductible donation by clicking here.