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Patient newsletter: Issue 1


HORIZONS Blog
 

Experiences from a patient representative: Susan Restorick-Banks

Susan Restorick-Banks was diagnosed with colorectal cancer in 2011.  She has been involved in cancer research since signing up to take part in the ColoREctal Wellbeing (CREW) study, soon after her diagnosis. She is now a patient representative advising a number of national research studies, projects and groups. She is a member of the HORIZONS User Reference Group (URG).

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.

 
Susan with Professor Claire Foster at BBC Radio Solent
 
Q: What other research studies have you been involved with as a patient representative?
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!!