I was diagnosed with stage 2B cervical cancer in March 2019 and started chemo-radiation and brachytherapy the following month.
Although I seemed to tolerate the treatment itself reasonably well, once the acute effects started to settle down, I began to be troubled by a range of what have turned out to be longer term problems. In May 2021, I was officially diagnosed as having 'late effects' of the treatment I received for cancer, and was told that I was living with PRD.
During and after my treatment, I really appreciated the support I received from my local Maggie's Centre in Cambridge, and also from Shine Cancer Support, a charity for people in their 20s, 30s, and 40s.
At Maggie's, it helped that the staff really understood the type of treatment I had and the side effects it could cause. I found it enormously reassuring to know that I wasn't imagining the pain and other symptoms I had started to develop some time after treatment.
Through Maggie's I heard about PRDA and I found their resources and peer-reviewed links to information about PRD extremely useful. I found the Patient Stories validating too - they confirmed that I wasn't 'imagining' things. I also found confidence in the knowledge that the people who related their stories had found a way of living with these issues.
When the chance to volunteer with PRDA came up, I hoped that I might be able to give something back and be able to help others as a result of my own experiences. You don't want anyone else to go through what you have been through. I hope, by contributing, I might be able to help those that are experiencing PRD at least a bit.
PRDA is a small charity and I like the idea of helping a smaller, more specialised charity which doesn't get as much attention as the larger cancer support charities.
Through PRDA I think I might be able to make more of a direct contribution to those who need support.
One thing I noticed was that there is a lot more information and discussion about bowel and bladder issues after pelvic radiotherapy, which can be incredibly debilitating - but these are not my main symptoms. My main symptoms are lower back pain and leg pain which cause me mobility issues and debilitating fatigue, all of which come under the umbrella of PRD, but which seem to be less common and less well researched.
Through my volunteering with PRDA, I hope that I might be able to represent - and raise the profile of - some of these "other" PRD side effects and their impact.
Being part of the PRD volunteer programme - a small community of people who understand and appreciate the impact PRD can have on your life - means a lot to me. Being part of the PRDA Patient Advisory Group helps to give a bit more meaning to my experiences.
Sharing what I have found to have helped me along the way is rewarding, and also gives me a productive way of saying "thank you", at least in part, for all the support I have been given over the last few years.