Fundraising news, Patient stories // 9th November 2021
Now in its second year, the 20 for 20 campaign invites people across the UK to support 20 lesser-known cancer charities by completing a 20-day challenge any time before December 20, 2021. Participants can choose to run, cycle, bake, knit, or whatever tickles their fancy and either donate any funds raised to a specific organisation, like Myeloma UK, or donate to a group pot to be divvied up between all 20 partner charities.
Here Dave McGovern shares his story in the hope of inspiring fellow myeloma patients and Myeloma UK supporters to sign up to the 20-day challenge and help raise funds towards vital services and research into treatment.
Dave McGovern’s story
For months Dave McGovern put the nagging ache in his ribs down to overexertion.
He was 47 after all, he reminded himself, too old to be “mucking around” in the garden with his daughters. But as the unrelenting pain soon spread to his back, it became clear this went far beyond the usual twinges and niggles of middle age.
It would take a year of back and forth with a rather dismissive GP and a severe bout of pneumonia and pleurisy for doctors to realise something was seriously wrong. When it finally came, the diagnosis was a complete shock: Dave had myeloma.
“It was worse than anything I’d imagined. I didn’t think it was anything more than a bone problem, right up until the last couple of weeks. I’d gone to the doctor a number of times. They never suspected anything. I guess no-one had joined the dots. And then, finally, I got an X-Ray in March time because I had pneumonia and pleurisy. The respiratory specialist ordered a series of blood tests that my GP did, somewhat reluctantly I have to say. After a couple of days, he phoned me, somewhat sheepishly, with the news that it was something serious. If I hadn’t had an infection, I’m not sure they would have found it still.”
Dave started treatment a week after his diagnosis in April 2021. He was among the first patients in Scotland to receive the newly-approved quadruplet combination therapy known as DVTD.
“The results have been impressive with my paraprotein levels reduced from 32 to four after two cycles. In terms of side effects, of course, there are ups and downs, but out of 100-odd days of chemo, there have been only about 10 or 15 when it’s been quite bad. I have been working. I definitely was expecting it to be a much tougher experience than it has been.”
Dave is due to undergo high-dose therapy and stem cell transplantation in the coming weeks. While he has responded well to treatment so far, his diagnosis and rounds of intense treatment have taken a toll both physically and emotionally.
“Mentally it’s tough. To have an incurable cancer, that’s playing on my mind. There is no prognosis, everyone reacts to the treatment differently. Not knowing when it’ll come back and how aggressive it will be when it comes back, it’s been hard. You’re in limbo for quite a long time. How we all mentally manage it, without a prognosis, is going to be a challenge, I think. My two girls are handling it well but they miss mucking about with me, I suspect. I’m more worried about my wife. We have to sensibly plan for a bad outcome. She’s been amazing and I always feel it’s tougher for the person watching someone go through treatment than the actual person going through treatment. Physically I’m tired a lot. I still have back pain. I was very active before – now walking anywhere is hard. I still keep as active as I can but not being able to do these things and do as much as I want is hard. It would be good to be normal for a day, just to remember how that felt.”
His only regret, he confides, is not trusting his instinct something was amiss and pressing his GP for answers.
Fighting on behalf of those currently living with undiagnosed myeloma and empowering both the public and healthcare professionals to recognise the tell-tale signs of the disease has filled him with a renewed sense of purpose.
“I feel my diagnosis could have been caught earlier. In hindsight I should have pestered my GP a lot of sooner. I guess it’s in my nature not to pester. I just thought, ‘It’s old age, I’ve mucked about with the girls’. I regret not pushing harder to get to the bottom of these things. If I had heard of myeloma, I would have mentioned it to the GP but, unfortunately, I hadn’t.”
“If you feel like there’s something that’s been going on for a bit too long, push harder to get to the bottom of it. I wish I had done that. Don’t give up.”
Wrangling with the looming threat of relapse, Dave often feels as though myeloma has not only taken over his body but encroached on every aspect of his life. Being diagnosed with an incurable illness can be all-consuming. The key, he insists, is not to let it.
“I try to keep active and keep busy; not to the point that I’m ignoring it, but you can’t let it consume you. Don’t let it be the only thing you think about. You have to force yourself to go for a walk, force yourself to do things that are mentally challenging. Don’t let it be the only thing that defines you.”
To sign up to the 20 for 20 campaign, visit www.20for20.org.uk