It all started with a pain in my back which ran down my right leg. I visited an osteopath who said that there was nothing wrong with my back but that the lump on the side of my lower right leg might be causing the problem in my back. This is where the wonderful chain of coincidences started as I had private healthcare and was able to go to London and see Professor Cobb - a knee specialist who calmly said "Of course you know this is a bone cancer and will undoubted spread to your lungs?"" How right he was. He then said a very comforting thought: "...this cancer is like a fast growing weed which is very responsive to chemotherapy providing it is caught early". He sent me to see Dr Beatrice Seddon a leading light in bone cancer who also sits on the European Board of Bone Cancer.
Dr Seddon was surprised and wasn't sure that it was bone cancer because of my age. However scans quickly confirmed that it was indeed high grade spindle cell sarcoma. Because of my age, there was concern that I might not be able to take the chemotherapy and operations that would follow. The alternative was 'palliative treatment' but I was certainly not going to give up and insisted I was able to stand the rigors that I would have to endure. My determination and attitude and the fact that my weight and height were reasonable for my age was what made them agree.
I was determined to survive! We have nine grandchildren and one great granddaughter and I wanted to see them grow up. I also realised chemotherapy alone was not going to be enough.
With the help of a friend, I found a wonderful organisation, Dulwich Health in London and in particular, Rolf Gordon who specialises in helping cancer patients through the introduction of magnetic therapy. Of course there are many sceptics of alternative treatments but at this stage I was prepared to listen to anyone who said they could help providing it did not interfere with the chemo. I had to put a large magnet on the cancer in my leg which vibrated at 3000 revs for 20mins each day. I can already see the sceptics raising the eyebrows!
My personal feeling is that you should trust your own instincts and that you should accept the help you are given and that you will survive. My wife, who without I would not have survived, has a deep Christian faith - her whole church prayed for me. I went back some 18 months later to thank them for their prayers.
Throughout the chemo I was told that they could not save my leg and it would have to be amputated above the knee. I accepted this advice very reluctantly but noticed that the large lump on my leg was reducing in size. So on advice from my GP Anthony Fincham, I wrote to all the specialist consultants involved in my treatment and asked if my leg could be saved. All of them said no, it was not possible. One of most important lessons I have learnt is that if you strongly believe something is possible then you should not give up. I insisted they preform another scan after my chemo had finished and they finally accepted they could indeed save my leg. I was booked to have my leg amputated three days before the decision not to amputate was finally made ... such a close call!
Following the very successful operation at Middlesex Hospital performed by Dr Rob Pollock, Consultant Orthopaedic Surgeon I went for check-ups with Rob over the next year.
I then had to face two long operations (4 and five hours) to remove the secondary cancer which had spread to my lungs - these were performed by Simon Jordan, Consultant Thoracic Surgeon at Brompton Hospital. Unfortunately after the second lung operation I was left in the recovery room on top of a heated blanket which should have been covering me; a serious error by the hospital. This resulted in severe burns on my back. I felt no pain for the first two days because I'd had an epidural in my back. This resulted in my body just about giving up and I was not expected to survive the night. Thankfully I did! And apart from some rather nasty scars on my back I am fine.
In 2008 during a routine check-up they found that my heart had been affected by the chemo, causing a dilated cardiomyopathy - the output of the heart was failing and I was in danger of heart failure. Quick treatment followed by Dr Simon Davies a Consultant Interventional Cardiologist and I had a defibrillator pacemaker fitted by Dr Rakesh Sharma, Consultant Cardiologist who is also Honorary Senior lecturer at the Imperial College.
In 2009 I had to undergo a further operation as a cancer nodule was found during my check-up; this is not unusual with this type of secondary cancer.
So after a five hour operation on my leg followed to remove the bone tumour, two long operations on my lungs, a defibrillator being fitted and six months of gruelling chemo; I have survived for six years. It is important to remember I have truly been blessed with some wonderful, kind and considerate doctors throughout these six years.
Yet another twist is that I have two cancer nodules, one on each lung and these are going to be 'zapped' with radiofrequency ablation on 9 December 2013 and 16 December 2013. These nodules are part of the original secondary cancer - they've just become active now. I have been told there is a 95% success with this type of surgery. This just highlights the importance of check-ups which I have every six months.
Donate now (This link opens in a new window) More about Spindle Cell Sarcoma of the Bone