Chordoma Foundation

Gary’s Uncommon Story: Remaining positive while dealing with recurrences

Gary uncommon chordoma story

My chordoma story started in 2000 when I felt a pain at the bottom of my back while sitting. My pain gradually worsened over four weeks, so I decided to see my doctor. My doctor couldn’t determine the cause of the pain and prescribed Ibuprofen. I spent the next several years seeking help from different medical professionals – physiotherapists, chiropractors, and acupuncturists – who were unable to resolve my pain.

Five years passed, and my daughter, Gemma, suggested I go back to my doctor and request further investigation into what could possibly be causing me so much pain. Finally, in August 2005, my doctor arranged for me to have an MRI at Warrington Hospital.

Two weeks after the MRI, my wife, Gill, and I returned to Warrington for my results:  I had a ball of matter the size of an orange attached to my coccyx. I was then referred to Royal Orthopaedic Hospital for further tests and a biopsy. The next two weeks spent waiting for the results felt like the longest of our lives.

Following the scans, we met Professor Grimer, who was to become my surgeon. Mr Grimer explained that I had a rare form of cancer called chordoma, and the way to treat it was to have it surgically removed. The tumour was very close to my bowel, and I would need to have a colostomy bag that could be reversed at some time in the near future if all went well. He told us that I was to undergo a major operation that would take about 10 hours to perform and result in a very large wound running up my back. I would be in the hospital for about three weeks and would need to learn to walk again.

I woke up from my surgery on January 4, 2006, to see Gill and my two daughters, Gemma and Gina. This was a very emotional time for us all. The next week was spent in bed until I was well enough to learn to walk again. Twelve days after arriving in hospital, I was allowed to return home. During my first month at home, I had my wound dressing changed and repacked every day at home. In the meantime, I was getting used to my colostomy bag and beginning to go outside for short periods of time. Finally, after about six weeks, I started to ride my bike again and gradually spend time at work. I was determined to stay positive throughout my journey, despite several setbacks along the way.

In April 2008, it was discovered that my tumour had recurred. It was the size of my thumbnail, and it was decided by my medical team my surgeon would try to remove it during a CAT scan. When I woke up from the anesthetic, I was told that the operation was unsuccessful and that they would try again in a month’s time when the tumour had grown a bit more. In May 2008, I had the second tumour removed successfully.

I had another recurrence in June 2011 and a successful surgery to remove it in July 2012, at which time it was decided that I was a good candidate for proton beam therapy. Proton beam was not (and is not currently) available in the UK, but the National Health System approved funding for my treatment to be carried out over three months in Florida.

I have since had clear scans, and Professor Grimer made me feel fantastic at my consultation in October 2015 saying, “Gary, if there was ever any evidence that chordomas can be cured you are the living proof.” Today I remain symptom-free.

Throughout this journey, I have always remained absolutely positive that I will beat this cancer. I am eternally grateful to my wife who has shared this entire journey with me and has always been with me during my treatments, consultations and scans. I can’t thank her enough. I am also grateful for the love and support from my two daughters (Gemma and Gina) and grandchildren (Liam, Leah, Lexie and Lacey). I now look at myself as a cancer survivor and would like to share this story with other people diagnosed with chordoma – I am living proof that it can be defeated. I hope this encourages people to remain positive throughout the journey. Here’s to the future.

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