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“Who dares wins” – Bob, an ex-SAS soldier shares his WM story

Bob Perry in WM T-shirt and holding mug
I promised myself that I would do something every single day to either help someone else or help myself
Bob

On my 60th Birthday in 2014 my wife, Deborah, surprised me with a family gathering at a beautiful farmhouse close to the Brecon Beacons in Wales.

I wanted to do the ‘Fan Dance’ – a run up and down Pen Y Fan, south Wales’ tallest peak. It was a true test of fitness, and one that I loved to complete when I was a soldier.

This time, though, I could barely walk more than 200 metres at a time without being totally out of breath. How disappointed I was! But this was when I knew that there was something wrong, badly wrong.

I went to and from the doctors. I was told it was anaemia, my asthma, my weight, even that I was just ‘getting old’! No treatment worked.

In October 2015, I was at the Millennium Stadium in Cardiff with Deborah to watch a Rugby World Cup game between Australia and Fiji, a fantastic game that made us reflect on how blessed we were that we could enjoy life in such a way. It was the last place I imagined getting a call from my doctor.

Just as the game finished, though, my phone buzzed. My latest blood tests were back and there was something seriously wrong. The local hospital wanted me in ASAP and they had a bed ‘reserved’ for me. I was shocked.

The next day, following more blood tests and a bone marrow biopsy, I was told that I had Waldenstrom’s macroglobulinaemia. Bang, have some of that!

All of a sudden, this indestructible, vital, super-fit, trained warrior was a mere mortal. I was going to join the ‘Chemo Gang’. My overriding thought was: why me?

Time to re-assess, I thought. I got my head down and prepared myself for six months of chemo, which was slow to start and turned into eight months. During that time I was able to re-programme and get my SAS head back on to take on this next challenge. After all, I thought, it’s just another Fan Dance.

My focus became totally about positivity. I learnt stuff about WM, I learnt about what my body could accept fitness-wise, and I promised myself that I would do something every single day to either help someone else or help myself, something positive!

One thing that troubled me was, with WM being so rare, how could I ever meet another patient? It quickly became apparent that you can’t just go up to the someone in the Haematology Department and say, ‘what’s the matter with you mate?’ But I felt it was so important to meet others, so we could learn from each other, and to give us a chance to share our various experiences and lessons.

So I decided to ask my brilliant consultant at Bournemouth Hospital, Dr Helen McCarthy, what she thought about me setting up some sort of support group. She was all for it and we set up the Bournemouth and District WM Support Group. The BAD WMers was born.

Prior to the COVID-19 era, we had three meetings: two in the Bournemouth area and one in Winchester and each one was well attended. They were fantastic for sharing concerns, questions and testimonies, and for generally being able to relate to another WMer. Helen was with me on each of these so that we had access to the very best and most up to date WM info.

I have met some amazing fellow patients at these events, each with their own story. What came across was the feeling of loneliness we each felt. The support group became very important and I hope to continue and grow it once we are all allowed back out to play.

In the meantime, though, I’m excited to be hosting the new WMUK virtual support group. The group is for WM patients from anywhere in the UK. Our first meeting is scheduled for 1 February 2021. You can find more information and register here.

With regards to lockdown, as a WMer I have personally found it a period of self-assessment and discovery. I have focussed on my personal fitness, I have taken up bread baking, am on my 306th consecutive day of learning French, and have started ballet every morning (yes, those of you at the London meeting who challenged me are in for a shock at the next meeting!).

I have found WM to be yet another of life’s challenges and with a positive mindset, along with a great NHS support team at Bournemouth, I am feeling great and positive about my future.

The SAS motto has stuck with me throughout: “Who dares wins.”

 

Date published: January 2021