Multiple Myeloma Joe O’Brien – The Patient Perspective

Joe O’Brien was diagnosed with multiple myeloma in 2011 when he was 51. He talks to Danielle Barron about living with the condition

It was the pain that was the first clue. The civil engineering lecturer at Athlone Institute of Technology felt in great shape as he reached a milestone birthday, but his already-gruelling runs were having more of an impact than normal.

“I always ran as I used to be an athlete, and as I reached 50 I was still running nine or 10 miles, two to three times a week. Yet suddenly I couldn’t shake off the stiffness. It kept creeping in the whole time.”

Problems with his knees soon followed, and when Joe began having pain in his jaw he knew something was up. Soon he was “crippled” with pain.

“The night doctor had to come visit me a few times, and on one occasion I was given morphine I was in so much pain – my muscles went into spasm and would keep me awake all night with the pain.”

One particularly bad night led Joe straight to his GP the following morning, who promptly sent him to hospital. There he stayed for 10 days, before being transferred to another hospital.

“I was brought in there in a wheelchair. This was tough for me as my wife has rheumatoid arthritis, the prognosis for which used to be a wheelchair. I had always told her that I’d be there for her, to wheel her around, but then all of a sudden I was the one in the wheelchair.”

A bone marrow biopsy eventually helped to confirm a diagnosis of multiple myeloma. Joe went straight onto chemotherapy for around 16 weeks. He also had a stem cell transplant, with a high dose of chemotherapy administered.

“From my understanding, my myeloma went from 66 per cent to under five per cent during that time,” he explains.

The pain, a classic symptom of multiple myeloma due to bone damage, subsided, thanks to proper medication. There were some side effects, such as weight loss and dizziness, but these were largely manageable, he says.

“My hair did fall out following the transplant, and that was a big deal for me even though I hadn’t much hair to begin with. From that moment, I really felt as if I looked sick, although then I got used to the bald head.”

He freely admits that he wasn’t ready to accept sympathy or help when first diagnosed.

“I initially didn’t want to go to the local support group in Tullamore because it reminded me I was sick. I didn’t want to receive support or sympathy – I wasn’t ready for that, because I didn’t think of myself as sick.”

Joe went back to work that September, 12 months after his original diagnosis.

“They told me to wait until Christmas, but I wanted to go back, so I did. What I didn’t realise was how bad I looked. Every year that passes now, I think how far I have come since then.”

He then began looking at options to improve his overall health.

“I started Pilates – it was with a women’s group but they said they didn’t mind so I joined it. I was completely bent over and I wanted to straighten my posture. My Pilates instructor now says she wishes she had taken photographs – she says I am like Lazarus. I have been able to get the flex in in my lower back again, and strengthen my core. Some people have a skeleton that holds up their body – I want a body that holds up my skeleton. I want to keep my core strong and I will never give up

Pilates because that is what has helped me. I need to get as straight a back as I possibly can.”

Joe also does some walking and cycling, and is currently on maintenance therapy for his multiple myeloma. He has his bloods taken every month and the indicators are that it is “steady”.

“I am living with it. My attitude is that I have only got one life and I want to make the most of it. If I can keep myself fit to the level that my body will allow me to be, then that’s the best I can do.”

He now regularly attends the support group in Tullamore, which he says is “absolutely brilliant”.

“I now discuss everything in my support group in terms of side effects, etc. And it is fabulous, as you can really talk about things like that with people who know what you are going through. Previous to that the only person you might open up to was your medical practitioner. We spoke very freely about it the other night, and gave each other tips, and we all needed it. And now that I am feeling a bit better, I can actually give support. It’s just a different way of looking at it.”

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