Tracie Miles, a nurse, remembers meeting Louise when she was studying her A-Levels . March is Ovarian Cancer Awareness Month. To mark this month, i speaks to Tracie Miles, a gynaecology oncology specialist and spokesperson for The Eve Appeal, about Louise, young patient who died from ovarian cancer. Louise’s family has asked that only her first name is used.
I’ve been a nurse for 35 years and a gynaecology oncology specialist for 17 years. Nursing is the most wonderful career. With each patient I learn more about the support they need to get through their diagnosis and treatment.
The four main symptoms of ovarian cancer Persistent bloating – not bloating that comes and goes Always feeling full Stomach pain Needing to urinate more For further information, you can visit The Eve Appeal website www.eveappeal.org.uk At a time when we are seeing the NHS under extreme pressure, the love and pride I feel from being a cancer nurse remains.
It’s a joy to care for women and many get through cancer and thrive. But I will never forget those we lose along the way.
My PhD is dedicated to a young woman who taught me so much in my early years as a cancer nurse specialist. She died of ovarian cancer almost 12 years ago but Louise’s death aged 20 is still fresh in my mind. Louise was studying for her A-Levels when she came to us with pelvic discomfort and grumbling pain in her stomach.
I remember looking at the shadow of a mass in her CT scan and thinking, my goodness. She had advanced ovarian cancer. Louise was just the most amazing young woman and caring for her was a privilege. When I think of her I remember how smiley, bubbly and gregarious she was. She was tall, sporty and played cricket. She loved watching the rugby. An incredibly intelligent young woman, Louise would ask questions all the time and planned to be a doctor one day. You couldn’t help but like her.
She endured numerous operations, chemotherapy and radiotherapy throughout. Yet she made us laugh so much. When she was coming round from various anaesthetics there would be arms everywhere because she wanted to hug everyone.
Louise went to medical school, receiving an honorary doctorate. She and her mum helped me design a gadget to measure vaginas and when I got it out to ask what she thought, Louise deadpanned: “that’s a bloody awful colour.” We became incredibly close. We would sit and gossip, eating Lindt chocolates until we felt sick. I still think about her whenever I see them.
When she was in the hospice where she died, I popped up one day to see her in a pink dress with a load of balloons because I had just been doing a tea party for someone. There I am, sat on a bed with these balloons, having a chat with my dying friend Louise. That’s who she was to me. I stepped over the line I hurt so much when she hurt – I just couldn’t bear it for her.
It was early days for me as a cancer nurse and I stepped over the line with Louise by becoming so close to her and her family. And I have absolutely no regrets. It was important that I had that experience because she taught me that if I give of myself that much to every single patient, I’m going to burn out.
Now I give 80 per cent to every patient of the 100 per cent I gave to Louise. Louise also taught me that with cancer and especially gynaecological cancer, it’s hugely important we recognise a person’s sexuality, even if they don’t have complete sexual function.
The idea that you can be a sexual being while being unwell is almost dismissed. From Louise I learned to listen to what the patient wants when it comes to honesty about their prognosis. Some patients will tell you, ‘I don’t want that information leaflet. I just want to put myself in the doctor’s hands.’ I’ve learned to work within protocol without forcing patients to accept those leaflets or information just to tick the box to say I did it. I still work with the same consultant who treated Louise.
We had a young patient in the hospital recently and as we were looking at her CT scan, the consultant turned to me and said: “Don’t worry Tracie, I don’t think this patient is going to be a Louise.” That’s the impact she had on all of us.
Ovarian cancer is far from silent Ovarian cancer is often referred to as the silent disease, but if we know what to look out for we will find that it is far from silent – it makes subtle noises along the way. As women we get used to bleeding. We start our periods earlier than ever before and we have periods well until our fifties.
Throughout this time it is very easy to ‘normalise the abnormal’ – put the niggling pain down to our menstrual cycle, disregard the bloating as eating too much, dismiss the feeling full very quickly as eating quickly. ‘It is a joy to care for so many women, many of whom thrive, but I will never forget the ones we lose along the way’ There is still so much confusion around gynaecological cancer.
I see women who have had their smear test and think their ‘gynae admin’ is sorted and surely that would pick up any of the five gynaecological cancers? That isn’t the case. The smear test just looks at changes in the cervix. It doesn’t address ovarian, vaginal, vulval or womb cancer.
If I could give one piece of advice to anyone reading this, it would simply be not to feel afraid to see your GP and run those non-specific niggles or symptoms past them. Get things checked. There are advancements in cancer treatment happening all the time and we know a lot more about managing infertility.
By Heather Saul
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