Three weeks ago, I went to the funeral of probably my best WM buddy Robin Swaine. Sadly, he had died of Covid following a few weeks in hospital on a ventilator.
I wanted to share a little bit about this amazing man. I met Robin about four years ago when I set up my second ‘in person’ Bournemouth and District WM support group (BAD WMers) at a local hotel. As I was welcoming my guests, I looked at Robin and realised that I had seen him before. We chatted and realised that we were both caseworkers for Dorset SSAFA (a military charity). So, it was amazing to us both that we really had ‘met’ a fellow WMer ‘out in the world’. Not only that, but we shared the same wonderful clinical team at Bournemouth Hospital.
Robin and I were both passionate about helping and reaching out to military veterans who were struggling with life after service, and it was not long before Robin asked if he could help me run a Woodland Wellbeing Project that I had set up in some nearby woods. Following that he turned up for every weekly session and helped me with the guys. I saw straight away what a caring and special man he was. A former Royal Navy serviceman, he took a real interest in all the clients, asking questions, advising, counselling, listening, all in a totally non-judgmental way and would be keen to help these guys whenever he could.
Sadly, Covid put an end to the project, not only because of the pandemic itself but of course because both Robin and I were vulnerable and had to shield! However, we stayed connected and once we were let out to play again, I would venture out on my bike to see Robin and sit in his garden for a chinwag. (A bonus was his wife Anne’s propensity to serve up cakes and tea whenever I visited). It was during these chats that I really got to know Robin’s attitude to his WM. He really did not see it as a defining illness but just something hovering in the background that he needed to live alongside. Although into his 70’s, Robin was keen to live every single day and was a keen swimmer locally in the bay at Swanage, as well as a member of the Purbeck Puffers Running group. He too enjoyed a bike ride. Not only this he was a prominent member of the local community, on all sorts of groups including charities and the Duke of Edinburgh Award scheme. He was so passionate about helping just about anyone that he could as well as getting the most out of each and every day.
My abiding memory of Robin however was the day that I went over to his house to have a go at doing a podcast with him about clinical trials (he had been on a trial for several years under Bournemouth Hospital). We sat in his lovely sun house with cakes and tea, and I set up my smart phone as we formulated a kind of script for the podcast. Once we were both ready, I pressed record and off we went. However, after about only three minutes of live recording Robin got stuck on a word that he wanted to say but could not remember. He kept racking his brain, I kept asking ‘what Robin’ and then we both ended up crying with laughter and I had to stop the recording. Once we had recovered, I asked Robin what the word was, and it was ‘chemotherapy’ (how could you forget that Robin!!). Anyway, we started again, (I wrote chemotherapy on a slip of paper for him) and the podcast went well.
So of course, by now, Robin and I were firm WM mates and we decided that it would be fun as we were both keen kayakers, to think about a fundraising plan for 2022 for WM and we concocted a ‘Waldenstrom's on the Water’ plan with Rich, another WMer. We aimed to kayak a ridiculous distance to raise our profile as a charity and attract some funding. Sadly, of course Robin will not now make that, but Rich and I are keen to go ahead in Robin’s memory.
I knew Robin was an amazing guy, but on attending his funeral I realised how little I knew about him. In his Royal Navy service, he rose to Lt. Commander level and served around the world including the Falklands War. He truly was an inspirational man, leader, father and husband. It is clear that he will be sorely missed of course by his family, but also by pretty much the entire population of Corfe where he did so much.
To finish, a quote from the Vicar at the funeral was, ‘We are all going to die, the best way to prepare for death is to live, every single day’. That sums up Robin Swaine! His WM was just a slight in the background, he had stuff to do, every day, and that positivity shone through every single time I was in his presence.
Rest in Peace Robin, and may your positivity inspire us who live with WM, thank you friend.
Written by Bob Perry, Patient Support Manager.