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From CEO to patient (and back again)
Date: 20 Sep 2020
Author: Jane Hatfield - CEO of FSRH
As September is both Gynaecological Cancer Awareness Month and Ovarian Cancer Awareness Month, our CEO Jane Hatfield, shares her experience with ovarian cancer.
One day I was a busy CEO of a charity, balancing looking after 2 young children with a busy full-time job. The next I was a cancer patient facing major surgery and chemotherapy for what was described as ‘advanced’ disease.
Twelve months later and I am only now beginning to start to understand the impact that this experience has had - and is having - on my identity, my self-image, my assumptions about myself and my life, my self-confidence and on those around me. This isn't all negative – for example, I feel less concerned about what people think about me after this experience. And I'm less interested in ‘sweating’ the small stuff. I genuinely want to know how people are and what's happening for them - and I want them to be interested in what’s happening to me. I feel a sense of camaraderie with others with cancer - particularly ‘my’ cancer (ovarian) and I have considerable insight into what it’s like to be a patient.
In particular, I have been struck by the way that those involved in my care communicated with me making ALL the difference to how I felt about myself and my condition. Open, clear, direct, empathetic communication (ideally with some humour thrown in) enabled me to feel I had some control over my cancer and its treatment. Conversely, clumsy, vague, disinterested communication made me feel anxious, fearful and angry.
One oncologist I saw (who I hadn’t met before) ‘mentioned’ at the end of a brief consultation that a ‘patch’ had been seen in my breast in a scan so I was being referred to the breast screening service ‘in case it’s a tumour’. I left that consultation in tears convinced I now had two cancers instead of ‘just’ one. Two weeks later, when my regular oncologist went over the same information with me I felt completely different – because she explained that the screening was a precaution and that judging by the scan it would be unlikely to be breast cancer.
I am privileged to run an organisation that works to improve the way that healthcare professionals deliver care to patients in the sexual and reproductive health field. My cancer experience has reinforced for me that healthcare professionals not only need the right knowledge but they need to know how to communicate it empathetically to their patients.
Diagnosing ovarian cancer when it is at an earlier enough stage to treat successfully relies very heavily on women and healthcare professionals (especially GPs) recognising the symptoms. Discussing the symptoms openly with a HCP requires women to feel confident and comfortable about talking about ‘reproductive’ health issues - it might be pain on penetrative sex or needing to wee more urgently or bloating. Having the sort of relationship with your doctor where you can chat about these things can turn out to be not just an issue of quality of life but also literally of life and death.
Of course, many healthcare professionals communicate brilliantly – despite the pressures that they are often under in the NHS. But I know SO many women of both reproductive and post-reproductive ages who do not raise reproductive-related issues with their GP. Or if they do they find that it is not a very satisfactory conversation. Why is that?
Many GPs still do not do much post CCT training related to sexual and reproductive health – and a few object to providing, for example, some forms of contraception or access to abortion. Perhaps they lack the experience or interest to discuss issues such as vaginal atrophy or incontinence after pregnancy or menopause. And perhaps as women we get the message from an early age that we need to put up with these things – period pain, side effects of contraception, issues related to sex, post-pregnancy complications, menopausal symptoms. They’re just something to put up with...
The reason I was diagnosed with ovarian cancer was that I had the confidence and contacts to arrange to see a gynaecologist about what I thought were my perimenopausal symptoms (I was 51). Thankfully, she had the training, time and interest to talk to me for long enough to suggest I have an abdominal scan. Neither of us expected it to be anything other than a routine precaution. I had two large tumours on my ovaries – and smaller tumours elsewhere. If I had not gone to her, I suspect I would have ended up in A&E at some point – as one in four women with ovarian cancer are diagnosed in Accident and Emergency departments – their cancer spread to the point that their prognosis is poor.
Although I am still on treatment – I am well enough and I have gone back to my ‘day’ job. What have I learnt? I'm not sure yet – I like to think I am more open and forgiving, a bit more patient and a bit less likely to worry about the small stuff. But I am also less confident, more vulnerable, have less stamina. Perhaps that could be an advantage in some ways – I used to feel almost cocky about my good health.
Facing our own mortality is something we all have to do. Now I'm even more passionate about the need for women – and men – to understand the importance of their sexual and reproductive health – and to demand services that meet and address their needs with empathy, expertise and commitment.