Di’s Story
In late November 2019 a large cyst was found on my left ovary. My story, though, goes back a bit further than this.
In my early twenties, I suffered from extremely heavy periods but it wasn’t until I was in my early thirties that I was finally diagnosed with endometriosis. During this period I had many digestive tests and a false diagnosis of Irritable Bowel Syndrome (IBS). Although I was found to have a hiatus hernia and acid reflux. Now, you might wonder what all of this has got to do with my ovarian cancer diagnosis. Well, I am not sure if it has, although I cannot help thinking that there must be some link with me having had endometriosis all those years ago. I think there is possibly more research needed in this area. I think it is important to say that it was my female doctor in London who saw through all the digestive tests and investigations and finally diagnosed endometriosis. The early digestive tests I had,and the digestive investigations I had much later when I presented with abdominal pains, seemed to have masked the real problems of endometriosis and, later, my ovarian cancer. Early diagnosis is so important, but this is why it is so difficult to achieve at the moment.
Back in 2019, I had just returned from a five-week train trip around Italy when I thought I should go to my GP as I was urinating far too much, suffering from abdominal pains again, and had a strange discharge. My GP (male), whom I knew quite well, and, by this time, in Brighton, went back over my history and as soon as he heard the word ‘endometriosis’ sent me off for a scan. The word ‘endometriosis’ was like a red flag to him …. interesting I thought.
So my scan in November 2019 showed a large cyst, which was later confirmed on 6 January 2020, when I had what is called debulking surgery, to be ovarian cancer stage 3a 1(2). Quite advanced and incurable as not diagnosed early enough. This was devastating news for both myself, my civil partner, Melanie, and our family and friends. Despite this, Melanie and I decided to face up to this positively, and this is what we have done with the fantastic support of our family, friends and much great professional support, especially from the Macmillan Horizon Centre, my specialist nurses, the Martlets Hospice, chemo nurses and my wonderful consultant.
There have been many challenges along the way, with me having many rounds of chemotherapy, a period of time on a maintenance drug called Rucaparib, and having to face the news of three recurrences. Not to mention facing all my early treatment throughout Covid, and suffering three times with it myself. The first time took me into hospital for five days – scary, especially when they brought out the form on resuscitation, yes or no. More positively, over the last five years I have had a year of NED (no evidence of disease) and about fifteen months, whilst on the maintenance drug, when life returned to normal – whatever that is. During these times there were trips to family and friends and more visits to Italy. However, something really good happened when I was to start chemo again during the middle of 2023.
Whilst awaiting a kidney function test, I met a really inspiring and dynamic woman called Delilah, who was about to start her first chemo. After we shared our stories, she asked if I would be interested in a support group for ovarian cancer and would I help her start one. I replied positively. With the help of the Macmillan Horizon Centre and Julie S, who joined us at our meeting with Elaine from the Horizon, we started to plan publicity and our first meeting. From our first meeting on 3 August 2023 our group has grown, somewhat sadly you could say, not that we do as we have grown in strength and positivity. Providing emotional and practical support for each other so we can all get through this the best we can. We have also contributed in part to the wider picture with medical staff working on early diagnosis. Also, our contribution to the local Ovarian Cancer Awareness Month events was a great success.
Well, back to me. I have just been taken off my weekly taxol regime, which I have been tolerating quite well. So, I await news, when I see my consultant on 4 February 2025, as to the way forward – more chemo, a possible trial in London or palliative care. Whatever it may be, it will be faced with the positivity, strength and support that has shaped my journey so far.
Di Shipley
I write this in memory of Julie S, Erica and Candice.