I was diagnosed with Renal Cell Carcinoma in July 2007, at the age of 59 after blood tests and an MRI scan following breast pains, an unusual presentation.
I had a right nephrectomy for pT3bN0M1 Grade 111 renal cell carcinoma. I later developed suspected metastatic disease by the time of the follow up CT scan in September 2007, with lung tumours. I now have metastatic cancer in my lungs/pelvis/spine//liver/sacrum/with disease progression in my bones.
I’ve had several surgical operations to remove tumours elsewhere including being treated with the excellent Gamma Knife to successfully treat thirty six brain tumours in addition to three I had removed by open brain surgery. That’s thirty nine brain tumours to date due to the care of my doctors and nurses, my positive outlook, and my Christian faith, which helps me get though each day and is a great comfort to me.
The diagnosis was a great shock to me, as it is with many, as both my wife Jan, and I were regular walkers who kept ourselves fit with visits to the gym, and I was a swimmer. I had just taken early retirement from a stressful role in a bank, and my wife Jan had retired from CRUK accounts section. I could find no trace of any hereditary renal cancer in my family, although my father died at 37 when I was just one, but his Death Certificate is marked “Acute Rheumatoid Arthritis”, although my mother said that as a lorry driver he smoked about 30 cigarettes a day!
My Jan died from rare triple negative breast cancer, without the chance to see our first wonderful granddaughter or be around to help my daughter, which only mothers can do. So in a way I feel guilty and pretty useless in that I wasn’t taken first, and I think it’s Jan who now motivates and inspires me to try and help others with this dreadful disease.
A few years ago I was asked by my oncologist to take on the Chairmanship of our local support group, Friends of Renal Oncology Group (FROG). I haven’t been able to attend for a few years now due to my disability. However, we set up a campaign team as four new drugs for KC had just been declined by NICE. So a hundred of us went to NICE HQ, in August 2008. Our main achievement was in persuading NICE to eventually make Sutent available for all, rather than just in selected postcodes.
In 2010, my MP and Prime Minister, David Cameron was moved to introduce the Cancer Drugs Fund (he says inspired by me – after drawing attention to our plight ) and so far over 70,000 patients have been helped by this fund. Previously I had taken groups of patients to see him and explained how we had been left with no effective treatment options for our rare type of cancer. I was delighted and honoured to later find that Mr Cameron had supported an MBE for my efforts in helping cancer patients
I had to pay £30k for two of my Gamma Knife treatments because I was refused funding. I went to see the PM who agreed they should be free for all from now on. So sometimes I have to pinch myself to confirm that I am still here and able to look after myself having survived so many brain tumours!
There’s so much to live for and so many reasons to continue fighting and honoured to be asked to be one of the Trustees of Kidney Cancer Support Network who do a first class job for patients. I have been writing a regular column in the Oxford Mail for many years in an effort to show that having cancer is not the end of the road and it’s so important to remain positive.
Clive Stone MBE