Dr Alison Farmer, 54, is a clinical nurse educator and oncology nurse in Southampton. She was diagnosed with ovarian cancer when she was 40. Alison has a PhD looking at the psychological aspects of breast cancer and has worked with Target Ovarian Cancer to produce guides for patients. Alison is married and has a 10-year-old daughter.
I had very subtle symptoms when I was around 40 and went to my GP. I had a bit of mid-cycle bleeding, which isn’t one of the usual symptoms of ovarian cancer.
My GP told me ‘all women get that’. I think it was only because I was a nurse that I knew that wasn’t true. She reluctantly said I could see a gynaecologist who referred me for a hysteroscopy (that didn’t show anything) and an ultrasound, which showed a 5cm mass. Everyone said it was a benign cyst but the policy was to remove it. I had it removed and was told everything was fine. A week later, the consultant rang to tell me it was cancer.
'The diagnosis didn’t surprise me'
I was the only one the whole way along who thought it was cancer. The diagnosis didn’t surprise me, it just surprised everyone else. I feel it was only my knowledge of medicine that pushed me to get a diagnosis. I suspect a lot of women would have accepted the first assessment that everything was normal.
I wish we were more like the U.S. where women tend to have a yearly gynae check. Lots of women don’t tend to get round to visiting their GP until the symptoms are really impacting on them. There definitely needs to be more work carried out in that area. I had to have surgery and chemotherapy because the tumour had burst and my cancer was stage 1C. Chemotherapy was recommended and I decided to opt for it as I was keen to go for every option available.
At the time I was diagnosed I’d been studying the psychological aspects of cancer for many years. Tongue in cheek, I referred to my PhD as work experience. Having your ovaries removed has an impact on your femininity in much the same way as having a breast removed. I still have quite nasty scars and would be reluctant to wear a bikini, for example. Also the loss of your ovaries effects your hormones.
'Your anxiety levels are so huge'
I found my knowledge about relationships and how they can change – close friends can disappear – really helpful because that did happen to me. I knew there was an explanation: close friends often can’t handle the distress. Other things did surprise me though. I was offered a clinical trial when I had chemotherapy and even though I had written patient information leaflets myself I couldn’t process the information. I ended up saying “no thank you”, which I find strange in hindsight because I know there are advantages to going in for clinical trials but your anxiety levels are so huge at the time.
I worked all the way through my treatment because I didn’t want to look or feel like a victim, but now I think why didn’t I take the opportunity to watch all of those black and white movies and read magazines? My treatment lasted six months. I had check ups for about seven years afterwards and then they just said to come back if I was worried.
I had my daughter two years after chemo. I didn’t have children before my diagnosis, which is why the impact was so devastating. My surgeon was fantastic and knew I was still hoping to have a child so he let me preserve my uterus, which is unusual. My oncologist in charge of the chemo was fantastic too: she still sends my daughter birthday presents.
'I’m now an oncology nurse'
After my illness I worked at Southampton University for eight years teaching the psychological aspects of cancer. I recently decided to go back to nursing because I missed patient contact. I had been an A&E nurse but went into cancer nursing as I knew the theoretical background and wanted to use that. I’m now an oncology nurse giving chemo and I’m about to start as a clinical educator. I’m hoping to improve the psychological care of patients, which in general is very poor.
Nursing is an incredibly busy job and sadly even I, with my experience, don’t have time to sit down and have an in depth conversation with a patient about how they’re feeling. I think there’s a lot we could do to improve that. The majority of patients don’t want formal psychological support, they just want someone to listen to them and reassure them that what they’re feeling is normal.
I want to give more lectures to nurses about what represents a normal cognitive response to a cancer diagnosis. Most patients will be angry, some will be depressed, some will be in denial and some will be very positive.
I was introduced to Target Ovarian Cancer very early on by my gynae nurse specialist. Because of my background in health psychology and psycho-oncology they asked me to contribute to their guides for women, wearing both the health professional and patient hat. They also get me to do fun things like talk to donors.
Breast cancer has had the lion’s share of research money over the years. Because of the significance of the breast and its links to sexuality, motherhood and self esteem, breast cancer has definitely had the most attention. Because of that the breast cancer mortality rate has fallen dramatically over the last 20 years so I don’t think it’s a bad thing – I just wish other cancers got the same attention.
Alison's story was originally published in Standard Issue Magazine and written by Sam Wonfor. Please visit their website for further coverage of Ovarian Cancer Awareness Month 2015.