When were you first diagnosed with Lynch Syndrome?
I was first diagnosed with bowel cancer in 2010 when I was 22. But it wasn’t until 2011 when I was having surgery to reverse my colostomy that I was told by a surgeon that I might have Lynch Syndrome.
Until then, it was something I’d never heard of before but I later learnt that it was something that runs in families. My brother had suffered a brain tumour but it wasn’t until after my first cancer diagnosis that we were able to understand my family’s genetic predisposition to cancer.
What was your reaction? And what did you do?
After hearing about Lynch Syndrome, I went with my parents to see a genetic counsellor, and as a result, we were all tested for it, starting with me. Before we had our results we were given all the facts about the condition and were emotionally readied for the worst.
In fact, although I have slightly hazy memories of my initial feelings around diagnosis, the genetics counsellor was very lovely, incredibly knowledgeable and thorough, and me and my family felt very well informed after the meeting. Because of this preparation, I was able to cope with the worst outcome: I was diagnosed with constitutional mismatch repair deficiency (CMMRD) syndrome, which greatly increases the risk of developing one or more types of cancer in children and young adults.
Of course, despite the counselling, receiving such news was very distressing and for a long time, I simply didn’t want to have to think about it, which I now admit was living in denial.
But over the years I have come to an accommodation with my condition and I have seen genetic counsellors twice more. Since 2019 I have additional screening for cancer as part of my ongoing health plan.
You’re a very active blogger. What do you get out of blogging and what do your readers?
I am. And I hope my readers have the same feelings of empathy and connection that I get from reading other people’s tweets and blogs. There are a lot of cancer communities online which offer great support and advice.
I began blogging about my cancer in 2012, and as someone who has always enjoyed writing, it was a completely natural thing to write about my illnesses. Let’s face it, I had bowel cancer in my formative years and in many ways it has shaped my adult life.
Blogging for me is powerfully beneficial. I get to use the language I want about my own cancer experience, and I studiously avoid the language of war like ‘battle’ or ‘fighting’ because I find it can dehumanise the experience. If you sadly die of cancer, it’s not because you failed to fight it hard enough. Another benefit of writing about my personal health situation is that it raises awareness of a rarer condition. Certain cancers like breast cancer are well covered in the media, but others simply get less exposure and I like to do my bit to redress the balance. All patients or former patients need to be able to make sense of their own experiences. I also feel strongly that people need to understand better that being treated for cancer, especially after chemotherapy, has long term consequences. It doesn’t suddenly stop being a worry or leaving a health legacy.
As a person with a chronic condition, how well does the health service cater for you?
I think the NHS has been really good for me. I receive all the scans and surveillance I need, which is so important when my risk is so high. The doctors, nurses and technicians are very diligent but one area where I’d welcome more support is coping with the emotional effects of the disease.
It really surprised me that after remission, there was no mental health counselling to enable me to process my illness and allow me to move on. As a consequence, I grappled for a long time with the fear of recurrence and not trusting my body, not knowing what it is going to do next.
After my second and third cancer diagnoses, the NHS did ask me how well I was coping mentally, but it was the wrong time to ask me. I think straight after surgery when the cancers had been treated would have been better timing.
As a consequence, I had to rely on myself to find the support I needed. Through Googling, I discovered the online Hope Course run by Macmillan, which lasts six weeks and includes practical tips including dealing with emotions, as well as diet and exercise advice. But being frank it was difficult to find online, even for someone like me who works in digital marketing.
What’s your main lesson when dealing with health professionals?
If you are meeting a health professional at an appointment, attend with the mindset that it’s a good thing and that they are on your side and want to help you.
It is easy for me to dread appointments, but I make myself remember that dealing with cancer is the issue and not the health professionals or my body. Taking up invitations is therefore a positive choice. If they find out that cancer is present, that’s good, you want them to find it, and sooner the better at its most treatable.
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