I trained as a nurse in 1979 and have 40 years’ experience. When I started to feel discomfort in my lower abdomen alongside bloating, it never occurred to me that I might have ovarian cancer. Initially, I didn’t get it seen to, but I finally sought medical advice after experiencing severe tummy pain that I knew was coming from my bowel.
After an ultrasound and CA125 blood test, I was diagnosed with stage IIIc ovarian cancer, with widespread peritoneal involvement.
My diagnosis
I've felt embarrassed with myself that, as a health professional working in an area of bowel cancer screening, I didn’t think it could be a gynae cancer but there isn’t enough awareness. Which is evident as it's so often diagnosed in the advanced stages, like mine.
I'd been away on holiday when I was persistently bloated, a bit like the feeling you have with a period. To be honest, I didn’t think much of it – as women, we know it usually comes and goes. I'd also been using HRT patches for a long time, so I didn’t rush to get it checked out.
A couple of months later I was at a friend’s fitness class on a trampette, and this triggered bowel cramp – so disabling that I was on the floor in agony. This was enough for me to know it wasn’t normal.
I saw the practice nurse who examined me. She then rang through my own GP and I was ordered a CA125 and an ultrasound. It all was very quick from then onwards. The ultrasound showed something on one of the ovaries.
Shock
I felt like I was hit by a train when I was told the stage and grade my cancer was at. I didn’t expect it to be as advanced as it was at stage III. It had spread all over the place. The surgery took nine hours, and that was then followed up with chemotherapy. This coincided with the pandemic, so we had to lock down. Me, my parents who I am a carer for and my husband.
My friends and family had lots of plans on how they would support me, there were meal rotas and everything but when the pandemic hit, circumstances changed and everything stopped dead. I was doing it alone, while caring for my parents.
I was on autopilot. Things had to be done but I was lonely. Being a carer, trying to carry on as normal and look after myself was draining. It wasn’t normal, everything had changed.
I got through it, and as my chemo came to an end the weather was nice, and people could start coming round and sitting outside. Within days of finishing chemo however I experienced extreme bowel pain and sickness and spent the next two months in and out of hospital with bowel obstruction.
After that though, for a year I felt good and enjoyed that time – if anyone could say they enjoyed the time of Covid restrictions. My hair grew back, my daughter got engaged.
A year on, I started to notice something wasn’t right again. I had a run of what we thought were two or three UTIs and at the same time my CA125 was rising. The day I found out I had a recurrence was awful. I was facing the realisation that the cancer wasn’t going to be curable, a hope I had held onto for so long.
The unknown
There are a lot of unknowns. I started chemotherapy back in February and have had mixed results since then.
There are good days and there are bad days. I try to put it out of my mind but something always brings it back. I have mini panic attacks and find it difficult at home. We carry on as if nothing has happened, like nothing has changed, but I feel completely different.
Ovarian cancer has had an impact on my identity. I was once very social and enjoyed a drink. I could still do that but I don’t feel any desire to go down to the pub and do the things we would normally do. I feel tired a lot of the time and it comes over me suddenly.
I'm fairly pragmatic, and my friends marvel at how I just get on with it. But I'm scared. I don’t want to die.
I'm expecting my first grandchild and I was to be the grandma that my mother was to my children, the knowledge that may not happen is very difficult.
There's still so much I want to do and live for, so I've decided to take control and do the things I want to do, see people I want to see, and see my kids. I have weekends away booked, and if there’s somewhere I want to be instead of at chemo I’ll be there.
Sharing my experience
I’m sure that there are other people out there who feel like me, that feel alone and lonely with this insidious disease. I hope by sharing how I feel it helps someone else.
I regularly check the online community run by Target Ovarian Cancer and have taken some comfort from other people talking about their issues. It’s interesting and helpful and I think it would be nice to contact other people who are in a similar situation.
There was so much I didn’t know about ovarian cancer, and I'm still learning. Cancer just wasn’t on my radar, especially as there is no history of it in my family and I had a hysterectomy 22 years ago, though the ovaries weren’t removed. I just didn’t think of ovarian cancer, more needs to be done to reach people at risk.
Considering what’s happened to me, I want to share my experience so that anyone else out there who may be at risk can know the symptoms and know to go to the doctors.
If you’ve been affected by this story and would like to speak to a specialist nurse, you can call our dedicated support line on 020 7923 5475 or contact us: [email protected]. We're open from 9am until 5.30pm, Monday to Friday.
If reading this story has helped you, join the Ovarian Cancer Community to connect with more people affected by ovarian cancer: www.targetovariancancer.org.uk/onlinecommunity
