My name is Ron Johnston and I’m writing this story two reasons. Firstly, to acknowledge the great debt of gratitude that I owe Prof Myint and his Papillon team at Clatterbridge Cancer Research Centre. My other reason is to add my story to the others on this site to give hope and confidence to those bowel and rectal cancer patients who find themselves confronted with the devastating prospect of living with a colostomy bag for the rest of their lives without alternative.
I was a healthy 63 year old when the results of a routine bowl scan programme gave rise to concern. I was I was sent for a colonoscopy which diagnosed me as having a low rectal cancer. The consultant surgeon informed me that due to the position of the tumour this would mean complete removal of the rectum making a stoma necessary and the use of a colostomy bag for the rest of my life. I was told that I would need to have chemo/radiotherapy in order to shrink the tumour before he operated. At this point I felt my life imploding.
Somebody else on this page referred to being ‘dumbstruck’ and indeed at this describes my initial feelings as well. When eventually, minutes later I found my voice again it was to ask what alternatives there were, only to be told that were none and that I should get used to the idea. The specialist nurses even gave me a colostomy bag to go home with so that I could see that “it wasn’t that bad really once you get used to it!”
Apart from colds and flu I had never been seriously ill in my life before and indeed did not feel ill then. On my way home in the car I said to my wife, who has been with me all the way through this experience, there is no way I can go down the route of having a stoma and colostomy bag. My own doctor did not have any practical alternatives to offer and so I set out to try to find my own. One of the greatest supports at this time was the Beating Bowel Cancer site which gives support to those of us diagnosed with this terrible disease. From there I realised that there were many different approaches taken to treating rectal cancer but nearly all of them entailed surgery and a bag. Eventually, I came across Mark and Sue Davies whose experience with rectal cancer treatment programs led to an alternative approach pioneered in this country by Prof Sun Myint at Clatterbridge. This was of course the Papillon treatment that I underwent after chemo/ radiotherapy over the summer / autumn period 2013. Now 2 years on I am in remission having a “complete clinical response with no symptoms and functioning in my nether regions the way I have for the previous 63 years!
At this point it is important for me to make clear that in general everything that is said to you at times like this by your medical team no matter who they are is actually well-intentioned and with your own interest at heart. However, it is also important to note that they too can be unaware of the alternatives or stuck to the way they have always treated their patients.
This month NICE has acknowledged the Papillon as a standard treatment (amongst others) for rectal cancer. The really important part of my story here for others (although the really important part for me has been “saving my arse” as Mark Davies puts it) is that we should be informed of all the alternatives before deciding on treatment options. The decision is so important that it has to be an informed decision with all the consequences considered. In my case no alternatives were considered positively by my consultant surgeon at the time of diagnosis and it was only after meeting Prof Myint that options and choices were made clear.
Although there is never a magic bullet with cancer of any kind Prof Myint and team have a gone a long way to combining their expertise to create one. A lot depends on the individual details of the patient but I am here to say along with others that Papillon clearly works and most importantly preserves quality of life as well. My thanks to all at Clatterbridge and also Velindre Oncology but most of all Prof Sun Myint for “saving my arse”.