It started sometime in 2000 when I felt a pain at the bottom of my back when I sat down. After about four weeks the pain was gradually becoming worse so I decided to see my doctor. After an examination, he didn’t know what was causing the pain and he prescribed Ibuprofen tablets to ease the pain.
A month later with the pain not getting any better, I decided to look at alternative methods to ease the pain and started by having a series of sessions with a physiotherapist. The physiotherapist advised me that it was a ball of matter at the bottom of my spine and after a few sessions suggested that I made an appointment with his friend who was into Reiki. After a few sessions with the Reiki therapist, she agreed with the physiotherapist that it was a ball of bad matter at the bottom of my spine.
After approximately three months of sessions of physiotherapy and Reiki and my back showing no signs of improvement, I decided to stop the treatment. After months of doing nothing to find a solution for my back pain, I decided to seek the help of a chiropractor. After a few months of sessions with the chiropractor and my back showing no signs of improvement and the pain actually getting worse I decided to end the sessions. By now I was feeling excruciating pain in my lower back when driving and sitting down so decided to try acupuncture combined with Chinese herbal remedies. Again after a few months of acupuncture and no sign of improvement, I decided to end the sessions.
After the acupuncture treatment, I noticed a slight swelling in the area where the pain was coming from but just thought that this was due to the suckers being used during the acupuncture treatment. By now five years had passed since my first appointment with my doctor and it was my daughter Gemma who suggested that I go back to see my doctor and demand further investigation into what could possibly be causing me so much pain.
August 2005 – Doctor makes an appointment for me to have an MRI scan at Warrington Hospital. Two weeks after the MRI scan Gill and I returned to the hospital for my results. We sat in the examination room when the specialist and two students entered the room. The specialist put a negative up to the light box and immediately takes it back down and the three of them leave the room. Gill and I had noticed a large circle on the negative to the base of my spine before it was taken away and we looked at each other in horror. The specialist and students returned to the room five minutes later and told us that I had a ball of matter the size of an orange attached to my coccyx and that he was referring me to an orthopedic hospital in Birmingham for further tests.
One week later we received a letter from Royal Orthopaedic Hospital in Birmingham asking me to attend the hospital whilst a biopsy was carried out. Following the biopsy was the longest two weeks of our lives as we waited for the results. Two weeks later we received a letter asking me to attend the Oncology Department for further scans. At the time Gill and I did not know what oncology meant, we were both in shock when we discovered that it meant cancer.
24th October 2005 – Attended the Royal Orthopaedic Hospital for CT, MRI, and CAT bone scans.
26th October 2005 - Following the scans, we met Mr. Grimer (who is now Professor Grimer) who was to become my surgeon. Mr. Grimer explained that I had a rare form of cancer called chordoma and the only way to treat it was to have it surgically removed. As the tumor was very close to my bowel I would need to have a colostomy bag that may be reversed at some time in the near future if all went well. He told us that it was a major operation and that it may take about 10 hours to perform, also I would have a very large wound running up my back. I would be in hospital for about three weeks and would need to learn to walk again. Also, he advised that this form of cancer had a very high recurrence rate.
4th January 2006 – Went into theatre mid-morning for my operation. Woke up from surgery mid-afternoon in the ICU and shortly afterward my wife Gill and then my two daughters Gemma and Gina were allowed in to see me. This was a very emotional time for us all. Later that day Mr. Grimer came to see me to see how I was feeling and told me that all went well with the operation. The next week was spent in bed until I was well enough to learn to walk again. Back on my feet, my next goal was to walk up a flight of stairs so that I could be allowed home. Twelve days after arriving in the hospital I was allowed home.
During my first month at home after my surgery I had my wound dressing changed and re-packed every day at home. I was told that my wound was about 2” deep and required lots of packing each day. In the meantime I was getting used to my colostomy bag and started to go out for short periods at first then built up the time on my feet in stages. Finally, after about six weeks of coming home, I started to ride my bike again and gradually started to spend time in the office again.
All along since being diagnosed I was determined to stay positive and not to let it get me down, and in March 2006 I was examined by a specialist at Selly Oak Hospital in Birmingham and had my colostomy reversed. During the procedure to reverse my stoma, I got an infection in my bowel and I was not allowed home until the problem cleared up, which took ten days.
April 2008 - Following an MRI scan it was discovered that my tumor had recurred. It was the size of my thumbnail and it was decided by my medical team that as it was so small my surgeon would try to remove it whilst in 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 tumor had grown a bit more.
May 2008 – Had the second tumor removed successfully.
June 2011 – Following an MRI scan it was discovered that the tumor had once again recurred. Once again the tumor was very small but Mr. Grimer decided to operate. Two weeks later I received a letter from Mr. Grimer saying that he was pleased with the operation and that he had removed a lump around the area where he thought the tumor was. Following my three month MRI scan after my operation, it was discovered that the tumor was still present and had in fact been missed due to its size. Mr. Grimer decided to let the tumor grow sufficiently so that he was confident of locating it during surgery.
July 2012 – Had third tumor removed successfully. My medical team decided that it was highly likely that the tumors may keep recurring and it was decided that I was a good candidate to be considered for Proton Beam Therapy and that we would be applying for funding from the NHS as the treatment was not available in the UK and needed to be carried out in Florida. It was an anxious wait to see if the treatment had been approved by the NHS.
November 2012 – Received the fantastic news that our application for funding had been approved and that in January I was being sent to Florida for Proton Beam Therapy.
3rd January 2013 – Boarded a flight to Florida to undertake Proton Beam Therapy.
January to April 2013 – Spent three months in Florida to undertake Proton Beam Therapy. My wife and grandson came out to spend some time with me for three weeks as this was the maximum that Liam’s school would allow him to have time off school. We had a fantastic three weeks but it was a very sad time for me once they returned to the UK and I was on my own once more. Glad to say that Proton Beam Therapy is available now in Manchester and London as it’s a fantastic treatment with few side effects, I believe that one day it will be the cure for cancer.
October 2013 to October 2022 – Scans all clear and no more scans required. During my consultation with Mr. Grimer following the 2013 scan I told him that I had read some bad things about chordomas and that it was an incurable form of cancer. His reply to this statement made me feel fantastic, he said “Gary if there was ever any evidence that chordomas can be cured you are the living proof.”
Following this scan, Mr. Grimer wrote to my doctor and stated the following, “It was a pleasure seeing Gary today more than 10 years after I first met him with a chordoma of the sacrum. He remains completely symptom-free and has made a very good recovery following the proton therapy he had to the sacrum back in 2013. He has no bladder or bowel problems and he is otherwise symptom-free.” The letter concluded with the following sentence, “There is a very good chance that he has now been cured."
My inner thoughts during my journey
Throughout this journey, I have always remained absolutely positive that I will beat this cancer. I am eternally grateful to my wife Gill who has shared this entire journey with me and has always been with me during my treatments, consultations, and scans and has been a great support for me. Whenever I have had to stay in hospital in Birmingham she has always stayed at either the hospital or local hotel so that she can be by my side as much as possible. I sometimes wonder if she actually realizes how much I appreciate her love and support and 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.
At times when I have read bad stuff on Google I have contemplated death and have always shared my thoughts with Gill who has always made me feel better immediately with her love and encouragement. I now look at myself as a cancer survivor and would like to share this story with other people diagnosed with chordoma and show them that I am living proof that it can be defeated and that people should remain positive at all times throughout the journey.
Here’s to the future – Gary Shaw-Binns