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Today on the Community News Blog we are really pleased to have Cordelia as one of our first guest bloggers of 2020. Cordelia is a counselling Psychologist who has written about the long-term effects of cancer and she has put together a piece for us today about her own experiences after her bilateral breast cancer diagnosis in 2004. Why not take a moment to read through Cordelia’s story?
‘I wonder how many others can relate to my story below?
I was diagnosed twice with bilateral breast cancer in 2004 but misdiagnosed first time round, so two diagnoses that same year. The cancer was a Stage 2 treatable cancer, though the first one was strongly HER 2, so very aggressive, but the tumours were very small, with no spread to lymph nodes or organs. I had two surgeries, two radiotherapies, each radiotherapy lasting 6 weeks. I then had four years of hormone therapy, so I escaped chemotherapy proper. These days I would probably be advised to have chemotherapy because of the HER 2 nature of my first tumour, but quite frankly, thank goodness I didn't, because I found the treatments I had very hard to tolerate and they seemed never ending.
Prior to having cancer, I’d thought the whole treatment process was much simpler and not as long or traumatic. As a psychologist, I had supported women going through breast cancer and thought I understood better than I did. But from the other side of the fence, I realised fast that it was tons worse than I could ever have imagined, even without the chemotherapy.
In fact that was worse, too. Yes, I was grateful for my life, and a good prognosis, but the quality of my life wasn’t great at all. The dizziness and urinary tract infections that started during my first radiotherapy had continued and got worse. I could barely believe it myself and others comments such as, ‘you should be over it by now”, or ‘you're over anxious’, made me feel suicidally low at points and very angry and upset. I wrote a poem in 2009, which was a plea to people to try not to say ignorant things about having cancer because they really don’t help.
My emotional state was also being very affected by having to come off hormonal therapy at points. I started to feel I might be going mad; after all, my training in psychology and counselling tended towards the “you should be over it by now,’ school of thought and that way of thinking about life after trauma was very ingrained in me, too.
I’m a writer as well as a psychologist and it was natural for me to write about what I was experiencing, so I started to write for journals and other publications, focusing particularly on the mismatch between what I was experiencing and what people, both in healthcare and outside it, said I should be feeling and thinking.
In 2007, I wrote a piece for Breastcancercare’s journal, Breast Cancer Care News called, Living on a knife’s edge after breast cancer. At that point I had a hunch I wasn’t alone feeling as I was because of the conversations I’d had with others going through treatment, but I was scared because I thought I was probably part of a small minority feeling as I did.
When the piece came out, I was astounded to find that many others were feeling as I was. They were just too scared to speak out, for fear of judgement. However, the main thrust of the response to this article was women saying that they were relieved that a psychologist who was experiencing cancer herself was saying these validating things. In a few cases, my words had brought them back from the brink of complete despair, which was very moving.
After that response, I felt much more confident and cranked up my writing with a book on breast cancer’s effects from my dual perspective, followed by a handbook focusing on the years after diagnosis. The intention of both books was to put forward another way of understanding life after trauma, a way that validated the fact that an extreme trauma such as cancer, disrupts lives for years and years after the traumatic event. And of course, with lots of cancers, there can easily be no end in sight, whether our cancer recurs or not.
My latest book, entitled Living with The Long-Term Effects of Cancer, which I was asked to write because this area is a growing problem, is my attempt to try to explain some of the reasons why people, including healthcare professionals, find it so hard to accept these effects exist across all cancers. I try to offer support to those suffering these effects, too.
I obviously don’t have all the answers but the way forward in a world in which so many people are getting and surviving cancer, 1 in 2 in the UK, is surely to take on this real and live issue and discuss it more than we do currently. I can only hope we start to do so more, in order to improve life for those of us who survive cancer, but whose quality of life is varying degrees of awful.’
We want to thank Cordelia for writing such an insightful piece for us drawing from her own personal experience. Have you been through a similar experience to Cordelia? Why not share your thoughts below in our comment section?
Thanks for sharing this Cordelia, having spent almost a year under the care of a clinical psychologist, it was interesting to read about a view from the other side! An important thing I’ve learned is that cancer is not one thing. It is a multitude of different illnesses, affecting people in very different ways. On top of that, patients are unique beings, bringing unique personalities, life experiences, backgrounds, ages, etc, etc. For me, care has to be patient centric and patient led, I think that is the way forward.
And I would definitely get those psychologists to tear up the handbook!
Those brave enough to read my verbose posts on this site and those who know me over here, "across the pond", know that life after chemo has been a challenge for me ever since my husband finished chemo in October 2018. I, personally, have never been diagnosed with cancer of any sort (although I did dodge a bullet with regard to what they thought was multiple myeloma a while back). Even so, cancer and all it involves touched me in ways I can only try and articulate. My mother died of multiple myeloma at 67, and watching her suffer for two years after being diagnosed was heartbreaking. When my husband was diagnosed with Diffuse Non-Hodgkin's Large B-cell lymphoma, Stage IV, my pain (granted, more emotional) was just as real as my husband's physical challenges. We have both agreed that this "beast" will forever hang overhead with its ugly teeth ready to take another bite out of our lives. That's not to say we aren't trying to focus on each and every day we are fortunate enough not to be sitting in the chemo clinic or staying overnight at the hospital. We laugh, we smile and we enjoy each moment we have been given to share. But . . . and there is a definite "BUT" in there . . . . . we have come to realize there shall forever be a defined realization of our own mortality looming in the horizon that we didn't realize in our younger days, hoping "cancer" would never find its ugly way into our lives.
The late effects of treatment, the possibility of relapse, or a secondary malignancy are all "REAL" possibilities. However, staring that devil in the face before has now eliminated the questions of how we would survive it, "What would that be like?", are no more. Many people walk through their lives with those questions, fearing the unknown. At least we no longer feel THAT fear and have come through the other side of it, feeling empowered to use our experiences and first-hand knowledge of what that looks like, what that feels like. Our marriage is stronger. Our time is more precious and we have learned how to recognize sincere compassion and understanding in its purest form in our friends and family, as well as those we work with.
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