‘I was astounded to find that many others were feeling as I was’ – The problem of cancer’s long term effects - by Cordelia

 ‘The problem of cancer’s long term effects – by Cordelia’ Written on a light brown and green image of tangled tree branches within a forest.

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?

 Community member ‘Cordelia’ holding a cancer effects pamphlet.

‘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? 

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