Sharon Applin was diagnosed with skin cancer, which led to having a big operation called pelvic exenteration. Here is her story:
In 2020, I was diagnosed with a skin cancer called squamous cell cancer. This was on the left side of my anus. I was first told this could be an anal fissure tear. After seeing a consultant at Poole Hospital who said he had not seen anything like this before, I was sent to have a biopsy. After my biopsy I was sat down and told that I had skin cancer. I had not had any real symptoms like bleeding, diarrhoea or any discomfort.
A plan was put together by the oncology team for me to have five weeks of intensive therapy. Chemotherapy was by a course of tablets at home and radiotherapy was at the hospital every day. This treatment was hard and did take its toll on my health. At this point, I had gone from 102kg to 92kg, and the weight just kept coming off. My treatment started at the end of October and ended on 24th Dec 2020. In January 2021 I was given the all-clear. But after one year of being clear, I began to feel unwell in January 2022. Things moved very quickly after experiencing bleeding, diarrhoea and severe pain. After seeing three consultants, I was sent to Southampton Hospital to see an amazing team of people, who told me my cancer had grown and was doing so quickly. I was sent for a scan to see how much it had grown and the results were not good. I was asked to sit down, and it was explained to me that I needed a major operation. It was also explained that if I didn’t have this operation, I only had six months to one year to live, but there was no guarantee that I would come round from the operation.
The operation was going to be around 15 to 20 hours and there was the issue of organising the surgeons and plastic surgeons to be all together at the same time. It was then explained to me that I was going to have an operation called TPE, Total Pelvic Exenteration. I did not understand what this would entail. This operation would remove all my organs within my pelvis and part of my bone from my pelvis and the pubic bone. I then had to have skin removed from my stomach to form a new sleeve where my bottom and my vagina were removed and the muscle from my stomach to fill in the void area of my pelvis. This then left me with two stoma bags. To come round from surgery to be told what they had taken and what I didn’t have any more was an emotion I never want to experience again. I was in hospital for two and a half months making sure I got my strength back and trying to put on the weight I had lost, which was a total of 40kg by the end of treatment.
Life has been difficult since the operation; it has left me with a life-changing condition but I am alive. I have had to change the way I think about my everyday routine. Where am I going and is there a toilet nearby? Can I park my car nearby? How long am I going to be away from home? I need to make sure I have my stoma bags stocked up just in case of an emergency, and a change of clothes in case of any leaks. I can’t just walk out the door anymore. I have to think about it. This is a mental strain all the time and has changed my life.
When I was in hospital I was asked by Charles West if I would be interested in helping with cancer research for the empty pelvic exenteration and if I would donate my organs and bone to help with cancer research. I agreed to this, and I have been involved with the research ever since. Being Involved has helped me come to terms with what I have had done, what I have been through, and to understand how the empty pelvic exenteration is done. Being involved in the research and providing my own input into what I feel is important to the operation – and seeing what others think – will hopefully help people undergoing treatment and surgery in the future.
My overall experience of this treatment has been a very hard journey, but with the correct care and support of the nurses and doctors, you can achieve anything.