Patient newsletter: Issue 1
Experiences from a patient representative: Susan Restorick-Banks
The Macmillan Survivorship Research Group at the University of Southampton has benefitted enormously from Susan’s input over the last seven years: we talked to Susan about her work with the Macmillan Survivorship Research Group and beyond.
Q: When did you first get involved with the Macmillan Survivorship Research Group?
A: I was recruited into the CREW study in 2011 when I was diagnosed with colorectal cancer. It was a traumatic time for me, but I wanted to give something back, I had a voice and wanted to use it and it helped me feel wanted and positive about my future. The questionnaires were long, but with a lovely mug of green tea, I sat down and answered the questions. Every time I received the questionnaire, I felt positive as I wasn't alone in this world with colorectal cancer. My first answer was generally the right one for me. If I sat, thought and pondered the answer, it didn't really help. I received a newsletter from the CREW study and I felt involved.
Q: When did your involvement in the CREW study start to become something more than completing the CREW questionnaires?
A: I was asked by Jane Winter, my nurse consultant, if I would help them celebrate that they had 1000 patients involved in CREW. Once this happened, I became hooked into helping further and looking at research from the patients' point of view. Through all the colorectal cancer time - radiotherapy, chemotherapy, operations etc. I felt very much wanted. My mantra became, I control the cancer not the cancer controlling me. Nothing would stop me doing anything!!! I checked newsletters, read papers, 'starred' in the CREW film, I went on radio with Prof Claire Foster, I spoke to the local newspaper.
CREW is a wonderful study and the fact they recruited 1,000 patients was ground breaking. I am very passionate about the study and probably a bit biased, but it was the start of some more great studies form the University of Southampton and the Macmillan Survivorship Group.
A: It is now 2019 and I have become more involved in research through the University of Southampton and the Macmillan Survivorship Group, for example the HORIZONS and ENABLE studies. I am a co-applicant on the study ENABLE and feel very, very involved. I have become a PPI at University Hospital Southampton, a member of CRUK Steering Group on National SACT Consent Form project, a consumer with the NCRI (National Cancer Research Institute) and a member of the NRCI Psychosocial Oncology Survivorship Clinical Studies Group. I also receive requests to talk to various people about my 'journey', if it can help, I will do so. Being a PPI is interesting and every meeting is different. This is all thanks to CREW.
Q: What does the future hold for you?
A: I retired in 2016, so technically I have lots of time. I love to travel and enjoy planning and seeing new places. Living better beyond my cancer has given me a thirst to enjoy every moment of my day. There have been a few cancer hiccups along the way, but it hasn't stopped me, and as I said earlier, I control my cancer!!