When Toby Edwards, 43, lost his life partner Sonia to leukaemia, he dealt with his profound grief by setting himself an epic challenge; to cycle around the coast of Britain. His goal was to raise money for three cancer charities, while also highlighting the desperate need for stem cell donation amongst ethnic minorities – Sonia was mixed heritage. His challenge was unfortunately hampered and postponed the day before he was due to set off when he was knocked off his bike, but he reveals how, despite this set back, having something exciting and positive to focus on helped him get his life back on track.
Toby with Sonia
“On the 3rd of July 2013 my partner of 21 years, my best friend, my soulmate and truly my 'other half', Sonia, passed away after battling leukaemia. She was only 43, but if you met her you'd think she was half her age. Not just because of her amazing ability to not age, but also because of her energy and vibrancy. I met Sonia when I was still a teenager so she had been there, every day for my entire adult life.
Sonia was always very healthy and had never been ill. Then one day on holiday she started to feel tired and struggled to walk up hills. She couldn’t shake her fatigue, so when we returned home, she went to see her doctor who initially just said rest for a few days, take some paracetamol and see how you get on. Sonia rested, but she was feeling worse. When she couldn’t get out of bed we went back to the doctor and then to A&E, but no one seemed to know what was wrong with her. At a final visit to the doctor, we insisted on blood tests and more investigation. Sonia was sent to an acute medical unit for further investigations.
That night, 16th November, 2012, a doctor diagnosed Sonia with leukaemia. The process from her feeling tired to being diagnosed only took about four weeks. Sadly, this was not our first experience of the disease; we knew all about it because only one year before, almost to the day, Sonia's mum had lost her battle with it after fighting for fourteen months.
The next day, because the leukaemia was so aggressive, Sonia started chemotherapy. She went on to have three cycles and was told she needed a stem cell transplant – this was her best chance of survival. The Anthony Nolan Trust and the African Caribbean Leukaemia Trust were there to help and support right from the start. They organised awareness raising events and donor drives to try and find a match – because Sonia had a mixed heritage it's much harder to find a donor, literally by multiples of a million. Both trusts work to keep increasing the numbers of donors on the register in the UK, and the more donors there are, from all backgrounds, the more chance there is of someone finding their match.
"In that moment my world was turned upside down, inside out, back to front, and in every other unimaginable way."
The Anthony Nolan Trust also talks to other countries with registers. They did, against all odds, find a match for Sonia in Taiwan, and arranged for the healthy donor's stem cells to be collected and transported to the UK immediately.
Unfortunately, soon after the transplant Sonia suffered complications and was moved to intensive care where she battled for a week. Tragically, she lost her fight. I was holding her in my arms, surrounded by our closest family and friends.
Toby
Sonia
In that moment my world was turned upside down, inside out, back to front, and in every other unimaginable way. Up until that moment I can honestly say that I had not once considered that Sonia wasn’t going to make it. The body takes over in these times of massive trauma and I remember feeling like I was floating above myself for weeks, as if I had detached from reality because it was simply too much to take in. Thankfully I am blessed with having great people around me who stopped everything to be there for me in the time following Sonia’s passing. They somehow always managed to find a way to make me smile when I needed it most.
I have always been a positive and optimistic person and while, at the time, I found it difficult to see how I could ever be happy again, I knew I didn’t want to spend the rest of my life being a victim of circumstance. I knew that if I even started down that path, Sonia would be shouting at me from wherever she was, telling me in no uncertain terms to stop it! I discovered that weekly counselling, learning to talk and share my emotions, combined with the natural rush of endorphins from a lengthy bike ride, far outweighed waking up as I had been for months, with a terrible hangover having tried to find a way to oblivion. And failed.
As I began to emerge from the fog and life was looking a little brighter, I started to look for challenges to stretch myself. It was on a three-day bike ride to Paris that I mentioned to some of the group that I was thinking of cycling around the entire coastline of mainland Britain. That was it, I’d said it and couldn’t take it back! After lots of research, I decided that I was actually going to do it – in Sonia’s memory and to raise awareness, and hopefully some funds, for three leukaemia charities, one of which was Bpositive.
Toby, shortly before he was due to set off for his big challenge
I slowly introduced the idea into conversations at work, and eventually they more than kindly agreed to let me take four months off. Once I got the green light, the first decision was choosing when to set off. May to July seemed like a good time as the weather would be nice (apart from maybe at the top of Scotland). Then, of course, the route needed planning. I decided to start in Hastings as some good friends of mine and Sonia's lived on top of the West Hill which overlooks the sea. It felt like the right place to begin from and return home to. I then had to find accommodation for three months. As I was taking the time off work on an unpaid sabbatical, money was tight. I couldn't book hotels all the way round, and anyway, it felt like that would somehow diminish the sense of adventure and exploration I was looking for. I started sharing the route with family, friends, and acquaintances. When people knew what I was planning to do, and why, it was astonishing how many, some of whom I had never met, offered to put me up for a night or two. As it turned out, I managed to find somewhere to stay for about 75% of the nights, which was just incredible.
I found a house-sitter and set about hard training. Some of my family agreed to be support drivers along the 5,000 mile route, and I went on television to tell everyone what I was doing and, most importantly, why I was doing it. I couldn’t quite believe it was happening. I was so excited. It also coincided with me feeling much better psychologically, meaning that the time on the road by myself could be spent imagining what I might do with the rest of my life.
"We have to embrace every situation we find ourselves in and try and find the positives in all of them"
One sunny Saturday morning eight months later, I walked out of my front door and off I rode, waving to my goodbye to my house-sitter. I was actually doing it, hitting the road for two months, cycling 100 miles every day. Amazing! However, cycling to Hastings where I was due to start the ride the next morning, I noticed a busy little junction up ahead and slowed to be cautious. I needn’t have bothered as a car came out of the junction and drove straight into me, hitting my left hand side, with my right shoulder hitting the pavement.
Ludicrously, my primary concern was for my bike. After explaining to the driver what I was meant to be doing and why, I asked him to find me a good bike shop. Later on, when I finally got to hospital an X-ray showed that my shoulder was clearly dislocated, the ball at the top of the humerus split in two, tendons and bicep detached. I had three operations the very same day I was meant to be starting my bike ride. To add insult to injury, I then tripped over walking to the station a few weeks later and broke my foot. Brilliant!
More than anything, this experience has taught me that as much planning as we do, and as much as we’d like to think we control our lives, we really don't. We have to embrace every situation we find ourselves in and try and find the positives in all of them. Organising the bike ride, irrespective of what happened, meant I was constantly thinking about something else and something positive. It helped me focus on things outside of my grief and gave me a reason to get up in the morning. It also kept me looking to the future instead of dwelling on the past. It was, in essence, a lifesaver.
This challenge has been so important to my own 'recovery’. I am back on my bike and getting fitter all the time. I have a couple of long rides arranged this summer and the big ride is definitely something I'd still like to do, after all, the planning has all been done.
Sonia isn’t with us physically anymore but her vibrancy and positivity are always with me, and they are are a big part of what drives me to enjoy life and want to keep living. We were together for 21 years. Growing from a teenager to the age of 40 with someone and spending almost every day with them, t's almost impossible for them not to be part of you. I know that she'd be 100% supportive of me doing something like the ride. She was always very clear that life is there to be lived and opportunities should be seized, which is what I was doing, and will continue to do."
Do you know someone who has been affected by acute leukaemia? If so, get in touch here.
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