In February 2018 Jo Waterfield was diagnosed with PMP (Pseudomyxoma Peritonei), a rare cancer which usually starts at the appendix. At that time, as a nurse for 38 years, even Jo had never heard of this condition. This Rare Disease Day we are sharing her story.
PMP is a rare cancer (approx 1:1,000,000). In fact, there are only 2 places in the UK which offer the specialised (cytoreductive) surgery and combine it with HIPEC (heated interperitoneal chemotherapy).
The road to the diagnosis of her rare cancer was not a straightforward one for Jo.
"In March 2017 I had a strange sensation of unexpectedly sighing/catching my breath, even at rest. This lasted for 2 or 3 weeks, so I asked my GP what she thought. A subsequent chest x-ray was normal, but bloods showed that I was anaemic. I was diagnosed with Coeliac disease 16 years previously, so anaemia wasn't unusual for me.
By November, I was just feeling 'not right', and being a nurse in general practice, and in my mid 50s, I asked if I could have a blood test to check my CA125 level. When this level is raised it can indicate ovarian cancer, though my GP thought this unlikely as I'd no abdominal symptoms.
When I had a phone call from my GP two days later, she sounded as surprised as I was that this tumour marker was significantly raised. After speaking to Rob, a GP colleague, he said that he'd spoken to his wife (an oncologist) and I should probably have an urgent ultrasound."
Nine days later Jo had an ultrasound which found both ovaries were enlarged, one more than the other. Following this result Jo saw a gynaecologist who carried out a CT scan. The conclusion for the results were that this was ovarian or primary peritoneal carcinoma.
"I had no feeling of abdominal distention or bloating. It was all really odd."
Following further tests in early 2018 including a biopsy, mini laparatomy Jo had a phone call from one of her gynaecologist's nurse specialists.
"I didn't have advanced ovarian cancer after all; it was a much rarer cancer, which usually starts in the appendix. Pseudomyxoma Peritonei (PMP). I'd be seen in a few weeks time at Basingstoke Hospital in Hampshire."
"To say that my head was in a spin, doesn't really cover how I was feeling. None of my GP colleagues or nursing friends had ever heard of PMP. But one good friend had. Her bridge partner had had surgery at Christie Hospital in Manchester about 18 months earlier, to treat PMP. He was alive and doing fairly well.
My children were 19 and 20 at this time. There was so much more of their lives that I wanted to share with them! I was determined to do all that I could to live as long as possible.
I had 12 hours of surgery (nicknamed MOAS - 'mother of all surgeries'), with HIPEC, in Basingstoke in April 2018 and was there for nearly 3 weeks. Recovery took 12 months. In June 2019, I climbed Ben Nevis for the first time!"
"The first indication of something being unusual for me had been the respiratory change/sighing 13 months previously. It turns out this was because my diaphragm was covered in mucoid tumour... and probably why I no longer hiccupped! I've always said to patients that by the time you're 50, you know your body well, so reporting any change, however slight, is always worth doing. I'm so grateful that I followed my own advice for once.
Unfortunately, a year to the day after my massive surgery, I was told that there were 3 new peritoneal tumours. They continued to grow and I started chemotherapy in October 2019.
My experience as a patient at the Beatson Cancer Centre has always been positive. Friendly and compassionate staff, and the nursing care in the Day Care Unit, where I had my chemotherapy, was superb. They were all so professional, knowledgeable and empathetic. At one session, a Beatson team member gave me a hand massage, which was so relaxing and comforting. Other volunteers were always round regularly with cups of tea and biscuits, both in the clinic and in Day Care, and there is at least one volunteer on hand at reception to help out and guide us in the right direction!
At the beginning of 2020, a conversation with a friend and fellow Beatson patient led us to plan a fundraiser using donations of women's clothing and accessories. At the end, we raised just short of £8000! We decided that Beatson Cancer Charity would receive £5000, partly as I'd benefitted from the great work that charity does, with the £3,000 donated to a local hospice who would also raise more money after selling the remaining donations. It was great to be able to fundraise for such a worthwhile charity."
Thank you Jo for sharing your story with us.
Get to know your body. If you notice any significant changes anywhere in your body that you think you should get checked out, book an appointment with your GP who is there to support you.