In 2007, at the age of 41, I was diagnosed with cancer.
It was a cancer that I had never heard of before. It was one that I had to learn about and it was one I feared.
My cancer was pancreatic cancer. A cancer where I was facing a 3% chance of surviving beyond five years in 2007.
I had no idea whether I would survive, although being diagnosed in time for surgery to remove the tumour did increase my chances of survival. I am currently still free of the disease and I am extremely grateful for this.
During the early phases following my diagnosis, I was trying to survive the cancer but mostly I was determined not to be a cancer ‘victim’. I did everything I could to remove myself from the cancer patient stereotype.
I was lucky, I didn’t lose all of my hair and in between treatments, I looked ‘normal’ – most of the time.
I also did not want to belong to the cancer patient club and I was probably one of the most anti-social cancer patients in the chemotherapy unit.
I deliberately kept myself to myself and I didn’t want to be ‘one of them’; I didn’t want to discuss my side effects or to see others in pain and anguish, or to acknowledge that I was, by default, a member of that club.
Even 11 years on, I question whether the label ‘survivor’ is an appropriate one.
To me, in order to survive something, the event or situation you survived must be over. Finished. You survive a car crash or plane crash. You survive a war or a natural disaster. When those events are done; it’s over.
The trouble with cancer is you never know if it will ever be over and there are no guarantees that it won’t come back one day, now or in the future.
This hangs over me and will remain for the rest of my life; the effects of a year of treatment are still with me as is the constant anxiety that my cancer may return.
After treatment I completely changed track and gave up my previous life to start a pancreatic cancer charity – Pancreatic Cancer Action.
Founding the charity has meant that I have not allowed myself to move away from the disease or been able to put it all behind me, which has been hard at times.
However, this was a deliberate and considered choice; it was hugely impacted by the fact that there has been no change in survival for nearly half a century, despite huge improvements in survival rates for many other cancers.
I am now able to use my cancer survivor status to help others; to give hope to people who may be facing the same cancer as I had.
I have immersed myself into the subject that is pancreatic cancer and am able to use that knowledge to help others navigate the health system, inform them of current treatment options and advise on where to go for clinical trials or even second opinions.
I do still often have bouts of survivor’s guilt – wondering why I am surviving while so many others do not.
So, 11 years on, I now have the label of a cancer survivor and it is a label that most of the time I am happy to wear as the alternative is just not worth thinking about.
However, I don’t want that to be the label that solely defines me. I am also a person, wife, daughter and mother, charity CEO and much, much more. All of these labels are a continuous part of me and I don’t switch in and out of any of them.
I am also not sure that this journey has completely finished. I am still not convinced that the term survivor is the correct one to use.
Mind you, I am also not sure what the correct amount of disease free time has to pass until that label becomes accurate.
So, does the label of ‘cancer survivor’ define me?
Yes, and I’ve allowed it to through my work at Pancreatic Cancer Action.
Has it change me? Yes and No.
Yes, because the experience of having and being treated for cancer and still being alive completely changed my perspective on life.
No, because I am still the same person I was before all of this happened – perhaps just a little more scared of the future.
Labels is an exclusive series that hears from individuals who have been labelled – whether that be by society, a job title, or a diagnosis. Throughout the project, writers will share how having these words ascribed to them shaped their identity — positively or negatively — and what the label means to them.
If you would like to get involved please email firstname.lastname@example.org