Published March 2021

I was not particularly unwell, but I knew that I was not particularly right either: extremely tired, bloated and, unusually for me, not very hungry!

I had started an Hormone Replacement Therapy (HRT) pill in September 2019 after being post-menopausal for a year and within a couple of weeks I had started to bleed.  I was not unduly worried as the accompanying HRT pamphlet had suggested that some abnormal bleeding might occur for the first 2-3 months.  However, I started to become uncomfortably bloated again – something that I had suffered with during the menopause.  This was also accompanied with a ‘heavy’ feeling and sharp pains on both my right and left sides.  This felt so uncomfortable, especially in bed whilst turning over.  The pain gradually worsened as did my breathlessness – to a point that it hurt to laugh, sit down, or walk! 

I eventually went to a GP who, in all honesty, took no notice of the bleeding or any of my other symptoms, instead suggesting that it was a urine infection and gave me a prescription for antibiotics.  Another urine sample was sent to the local hospital which also came back clear.

I continued with my visits to the GP surgery – each time explaining the same symptoms and that, by now, I had been bleeding every day for the past 5 months!  I was lucky enough, at this point, to see a female locum who examined me and sent for a CA125 blood test.  This came back raised at 69 but nevertheless, I was misdiagnosed with IBS, wind, and constipation, of which I had never suffered.  Since I was not happy with the diagnosis, I was given an ultrasound scan but, unfortunately, this too came back as showing ‘no obvious abnormalities.’

I was still in constant pain and knew by now that I was dealing with ovarian cancer but feeling frustrated that no-one was listening to me!  I persisted with my GP appointments until they eventually relented and made a gynaecology appointment for me.

I was finally given a transvaginal ultrasound scan, quickly followed by a CT scan which showed a mass under my right ovary.  Things then moved very quickly. On the 30 April I had:

• a total abdominal hysterectomy (removal of the womb and cervix)
• a bilateral salpingo oopherectomy (removal of both ovaries and fallopian tubes)
• an omentectomy (removal of the omentum, a layer of fatty tissue that extends downwards from the stomach in front of the abdominal organs to protect them)
• an appendectomy (removal of the appendix)
• a lymphadenectomy (removal of one or more lymph nodes)

I spent 5 days in hospital alone and with no visitors due to Covid.

My diagnosis was given to me over the telephone three weeks later – high grade serous ovarian cancer staged at 3b.  I cried but didn’t have a breakdown.  I was very matter of fact about the whole situation I now found myself in and was eager to begin the plan that was set out for me – 18 weeks of chemotherapy – carboplatin and paclitaxel.  I shed more tears over the thought of losing my hair during chemo, which I find silly now that I think about it as ‘it really is ONLY hair AND it grows back’.

The loneliest and most scared I have ever felt was at the end of my last chemo session in September last year – feelings of:

What now?

Who is going to look after me and make sure it doesn’t return?

What if no one listens when/if I have a recurrence?

I am currently No Evidence of Disease (NED) and waiting on the results of another scan (more bloating issues) and yes, Scanxiety is very real as are my ‘sometimes’ low moods and anxiousness.  I have just signed up for six weeks of cancer counselling to help combat these feelings and worries that I continue to have.  I know that with the right support, I will be able to move forward into my future instead of feeling constantly threatened by ovarian cancer.

I am telling you my story as it's ovarian cancer awareness month and I want everyone to know the symptoms and to persist with their GPs if they are not happy with their diagnosis given– We know our own bodies!!  I also want to let others know that, once diagnosed, it is ok to seek further help and support when their treatment has ended.