Karen was initially diagnosed with stage 1b ovarian cancer in 2019. After further tests this was changed to stage 3b. Karen wants to share her story to help raise awareness of ovarian cancer and its symptoms.
Looking back, I think I was needing to wee a bit more than normal, but I just put it down to my age and didn’t think any more of it. I didn’t know anything about ovarian cancer.
A changing diagnosis
In early 2019 I started to feel some pain and discomfort in my tummy. I asked my husband if he could feel anything there and he confirmed what I had been thinking – there was a lump.
I immediately made an appointment with my GP and they too felt the lump in my tummy. I was sent for an ultrasound a week later and the scan showed I had a 16cm cyst on my ovary.
In May 2019 I had keyhole surgery to remove the cyst. When I came round from the operation my surgeon told me that they had also decided to remove my ovaries and fallopian tubes during the procedure. I was assured that everything had gone well though and went home confident that I’d be back at work after the six-week recovery period.
During the last week of my recovery, I was due to start work again on the Monday, I got a call from my surgeon asking me to come and see him. At that appointment I was told they had found cancer on one of my ovaries, but it was only stage 1b so not to worry too much.
After this initial diagnosis I was sent for several blood tests and a CT scan. That was when everything changed. They explained that the cancer had spread to parts of my bowel and my appendix, and it was now considered stage 3b.
The emotional toll of treatment
August 2019 was when I had my second operation to remove cancer from the affected areas, including part of my bowel. I was told I may need to have a stoma fitted afterwards which was a real concern for me. I remember being fixated on the possibility of living with a stoma more than anything else.
Thankfully it went well, and they managed to remove all visible signs of cancer. I also didn’t need a stoma which at the time was an incredible relief.
A month later I started my course of chemotherapy. Six rounds in total. I really struggled to come to terms with losing my hair and eyebrows in the process.
I couldn’t even look at myself in the mirror.
Looking back now it seems crazy to be worrying about that at a time when the treatment is saving your life – similar to how I’d felt about the stoma – but in the moment it was overwhelming.
The Covid-19 pandemic
My husband and I went on holiday in February 2020 to celebrate the end of my treatment and shortly after that I went back to work. I was so excited to be back and have a weekly routine again.
However, all that changed just three weeks later with the Covid-19 pandemic. At the start of lockdown, I was classed as vulnerable and could no longer work due to having too self-isolate.
I had to continue going to the hospital for regular scans and blood tests. To be honest I think I got a bit lost in the system once the pandemic hit. There was limited support and no additional resources to help try and come to terms with my diagnosis and what I’d been through.
I didn’t even have a number I could call on days I was really struggling.
I had my first recurrence in March 2022. Due to being diagnosed at stage 3b it wasn’t a real shock. I’d started to feel differently as well and knew that something wasn’t right. In that appointment I remember saying to my oncology nurse – ‘I’ve just got a feeling it’s back.’
There was definitely more support available post pandemic, including additional opportunities like massage and acupuncture sessions during treatment. I had another six rounds of chemotherapy and responded well.
After that, I had six months with no signs of visible cancer – but I’ve recently started a new course of chemotherapy after a second recurrence. This is due to finish in October 2023.
This time around the first session made me feel incredibly tired. I just thought I needed to rest but by chance I found out that it was much more serious. During a trip to A&E for my husband I thought I’d pop in and see the nurses working on my chemotherapy ward.
While explaining about how I’d been feeling one nurse became concerned and did a blood test there and then. The results showed that I had a dangerously low platelet count, and I was admitted immediately to have a blood transfusion. After a short stay in hospital, I'm now back home again and hoping to finish my chemotherapy as scheduled.
Finding a community with Target Ovarian Cancer
I joined Instagram in early 2022 before my first recurrence and found Target Ovarian Cancer’s content. Reading other people’s stories really helped me feel like I wasn’t alone.
Being able to reach out to other women who had gone through their own journey with ovarian cancer helped me build up a support network of people that just understand how you are feeling.
The reality of what we're going through does hit home when you hear that someone has passed away, as I’ve built up a real rapport with people, and it's incredibly sad. Those relationships have been so valuable to me during my experience.
I wanted to share my story as I feel strongly that people need to be more aware of ovarian cancer and if I can help even just one person learn the symptoms of this disease then it’ll be worth it.
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 5pm, Monday to Friday.