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This year I will be running my 10th London Marathon for Cancer Research UK. Whilst I will always run in memory of my brother Rob, my mum Marion and uncle Doug, I am dedicating this year's London Marathon to a very dear friend of Nigel's and mine, Simon Tucker. Simon has very kindly agreed to share his story. Do take the time to read his account - early diagnosis and awareness can very often give us a much more positive outcome. Simon's story also proves just how important fundraising is to improve treatments and perform pioneering surgery. Unfortunately, I am unable to give a caption to each of Simon's photos. The main photo is of Simon leaving hospital 3 weeks post-op. The second photo shows the lump on Simon's leg and the third depicts that humour is often the best remedy during tough times.

In his own words, this is Simon's story:

“Life is what happens to you when you are making plans for something else” – John Lennon.

22nd June 2023 – a day that will live with me forever. It was the day I took a phone call at work from Addenbrookes hospital. “Mr Tucker, I’m afraid we’ve reviewed your MRI scan, and think that it is more than just a haematoma. We’re referring you to Birmingham Royal Orthopaedic Hospital for a biopsy. They are specialists in sarcomas”. No… this can’t be right. I pulled a thigh muscle in September playing football. The physiotherapists thought it was a retracted muscle or a haematoma…

The biopsy proved otherwise. Myxofibrosarcoma – I could barely pronounce it , let alone understand what is was. I was lost in Dr Google… a rabbit warren of medical papers and articles, all of which painted a bleak picture of outcomes. I learnt that my sarcoma, was a very rare cancer of the muscle tissue, and represented less than 1% of all cancers diagnosed each year. The tumour was grade 3 and angry. Fortunately, the CT staging scan showed that it had not yet spread. There was hope.

Within a month I was starting the first of 5 weeks of radiotherapy at Addenbrookes, scared about the future and very apprehensive. My life didn’t feel as if it was my own anymore. Decisions were being made for me – either by the medical team or by my own body failing me. There were things I couldn’t do or wasn’t allowed to do and there were things I had to do; complete the radiotherapy and undergo a resection to remove the tumour.

At 53, and for the first time in my life, I had an almost crippling anxiety about the future and what it could look like. How would my wife and son (Inge and Adam) cope if I wasn’t here? What can I do to safeguard their futures? How long will I live? Will the operation be successful? Will I be completely cured? Will the cancer come back? Will there be more operations and if there are, will they be successful or not? How will we cope financially and emotionally? The questions spinning around my head were endless. The notion that I would get to my sixties and enjoy a happy and long retirement was disappearing rapidly.

Life really was happening to me. I never thought that at 53 I would be diagnosed with cancer. It doesn’t seem fair and yet why shouldn’t I get it? 1 in 2 do – so why not me? Somehow, you always think it’s going to be someone else, a neighbour in the street, or the chain-smoking bloke at work who has a fag break every 40 minutes. Not a guy who has never smoked, eats healthily, and exercises.

But there is always hope. Starting the radiotherapy made me feel like I was fighting back and taking action against an indiscriminate and intimidating disease. Family, friends and work colleagues rallied around, providing an invaluable support network. As the radiotherapy started to take effect, the leg pain was subsiding and although I still had a 22cm long tumour in my thigh, I was really starting to think that the diagnosis wasn’t necessarily a death sentence. I stopped scouring the internet and trusted my fantastic medical team to give me the answers to my questions. In amongst the blunt truths of how sarcomas can affect you, there were also plenty of examples of people that not only had survived a similar diagnosis, but who were living full lives over 20 years later.

Fast forward to the 8th of November and I am laying in my hospital bed the night before my operation, thinking about the conversations with my surgeon. “Mr Tucker, we’d like to discuss something with you. We can remove the tumour, but there is a risk that with removing 2-3 of your four quadriceps, your leg will buckle when you walk. Our plastic surgery team would like to remove some muscles from your back, and reconstruct part of your quadriceps. Over time and a lengthy programme of rehabilitation, this could strengthen your leg and provide a better quality of life”. My first thought was that I wasn’t keen on being a guinea pig, but when the plastic surgeon said that if it didn’t work, I would be no worse off, then it was a no brainer. I had to go with it.

More thoughts careered around my head.

‘Will I wake up on the 10th? Will I ever be able to live without pain? Will I be able to walk/jog/cycle/swim drive a car? How will I feel about myself when I see my body in the mirror for the first time, muscle carved away from my back and put in my leg. Will I be able to move my arm/shoulder properly in time? How hard will the physio be? Will I be in pain and want to give up- and just feel sorry for myself? Will I become depressed and suffer from some form of post-traumatic stress disorder? How will I cope with work? Will colleagues treat me differently?

The good news is that I can start to answer some of these questions. After a 10-hour operation, the surgeons were delighted to tell me that the operation had gone better than even they had hoped for. The muscle taken from my back fitted perfectly in my leg, and they were able to completely remove the tumour intact with good margins. The treatment I received from everyone in the healthcare team, was fantastic, from the nursing staff, surgeons and physiotherapists. I was in hospital for 3 weeks; by the end of the second week, I was walking with a frame and by the end of the third week, I was able to walk out of the hospital on crutches.

Today is the first of January 2024. I have enjoyed a great Christmas with my family and feel that there are plenty of reasons to be grateful for the life I have and to look forward to 2024 with optimism. I am relatively pain free, have a good range of arm movement and can walk without crutches. I have also just parked the car and am looking forward to returning to work and seeing colleagues. I am getting my life back!

So why am I writing this? Sarcoma is a rare form of cancer and compared to other types of cancer is not as well understood. Surgical removal of the tumour is still the main treatment, and although there have been many breakthroughs in cancer treatments, for sarcomas that have spread, the prognosis often isn’t a positive one. There has been some great advances in the use of immunotherapy and targeted drug therapy but much more research into sarcoma treatment is needed, at a time when the competition for funding is ever more critical and funds are scarce.

I am not out of the woods yet. My life will be lived in 90-day cycles of chest X rays and CT scans for the next 5 years to monitor if the cancer has returned. I don’t know what the future will hold for me and my family, but I am grateful for the second opportunity I have been given to live a good life.

Much of the fantastic research and pioneering treatments that is undertaken by scientists and doctors, wouldn’t be able to happen without the tireless and selfless fund raising that is carried out by people like Debbie. We are privileged to have her as a friend and am in awe of her and the amazing fund-raising work, she’s done – this being her 10th London marathon. I am honoured and grateful that Debbie is running this year’s London Marathon in memory of her brother Rob, and for Cancer Research UK.

Your donation can help fund groundbreaking treatments and give hope back to all those affected by cancer. Thank you for reading this and if you’d like to learn more about sarcoma please visit:

https://sarcoma.org.uk

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