As far as I was concerned, I was fit and healthy, progressing well in my career and enjoying life with my wife, Deena. It had been confirmed that my mother carried the BRCA1 gene mutation, so I was in the process of being tested for it too, but having all the information I felt confident that I could spot the signs of cancer if I needed to.
However, even though I had read and researched the symptoms to look out for, I still didn’t see it in myself.
Initial symptoms
I first noticed a dull ache in my lower tummy in December 2020. I put it down to perimenopause and not being as fit as I wanted to be. I then noticed changes in my bowel movements, but thought it was probably due to increased stress. In early April I contacted my GP as I had also started feeling bloated.
I did a stool test and was given peppermint tablets to help ‘settle my system’.
Looking back, I'm disappointed that I wasn't referred for a CA125 at this stage. I'd requested BRCA1 testing just the month before after my mother’s results – I had a 50:50 chance of having that same gene mutation.
In June 2021 I contacted my GP again – my stomach had continued to grow, and I noted that I was getting up to wee more in the night as well. This time I was referred for a colonoscopy.
My first colonoscopy was cut short due to the doctor being unable to pass the camera around my sigmoid bowel. They explained it as if something was pressing on it from the outside. As it turns out that is exactly what was happening.
They ran some more tests and scheduled an ultrasound for the next day. During that procedure I noticed the two health practitioners in the room looking at each other as they started measuring something on the screen. They told me that a report would be with my GP within two hours. That was the moment I realised that this was serious.
My GP confirmed that the ultrasound had shown that there was something there and I needed a gynaecology referral.
Diagnosis
I was very fortunate at this point as I had access to BUPA. This allowed me to contact a gynaecological consultant that same day and three hours later I was walking in to my first appointment. I'm so grateful to his office team for the swift appointment. For many women this takes a lot longer.
There were still Covid-19 restrictions in place, so I had to go into the appointment on my own, with Deena waiting outside. After looking at my initial scans and a very cursory exam, I was told there and then that I had late stage (later confirmed as stage 4b) ovarian cancer. It was treatable but not curable.
What followed was a whirlwind of tests and treatment plans.
Treatment
Due to how the cancer had progressed, I had to have chemotherapy before surgery was an option. On the first day I felt quite upbeat. It was the day that I got to fight back against the cancer.
Covid-19 restrictions meant that we couldn’t have visitors during chemo, so it was just me and the nurses. For me this turned out to be a positive experience as everybody in the room either had cancer or worked with cancer, so we could just chat about it freely without judgement.
I had thought about losing my hair once the chemotherapy started, but I hadn’t expected it to take nearly three weeks and then be overnight. On that day, I woke up and did the single most empowering, most exciting thing; I went out into the garden and shaved my head.
Since my diagnosis, all I had done was diligently follow my treatment plan – everything I had done was what other people had told me. I was following a plan. For me, shaving the rest of my hair off was the moment that I took back some control.
Surgery
After my fourth chemo session I took a break to build strength for my surgery, scheduled for early November. However, on the morning of my surgery it was confirmed I had the coronavirus, and I had to isolate for 10 days. Thankfully I didn’t have any real symptoms and Deena and I took the opportunity to rest and recuperate at home.
Two weeks later I was ready to have the surgery. I was nervous but excited going into it. Four months after my diagnosis we were finally going to get rid of the primary cancers in my body.
The surgery was a success and afterwards my surgeon told me that all visible disease had been removed. I felt hugely relieved. After all my research I knew that it meant my chances of recurrence were lower.
That said, at no time have I felt elated. People around me wanted to celebrate 'beating cancer' but it really didn't feel like that. Ovarian cancer casts a spectre across your life and the risk of recurrence is so high that I don't think I will ever have that feeling.
Just before Christmas 2021 I restarted my chemotherapy. Throughout the month the focus had been on my recovery, so we hadn’t had a chance to decorate at all. That day though, whilst I was having my treatment, Deena decorated the house – Christmas tree and all. I wouldn’t have made it through this journey without her unwavering love and support.
Life after treatment – finding Target Ovarian Cancer
Up to this point, we had done everything on our own. But as I approached the end of my chemo, I realised that it was going to be so much harder to be out of treatment. I felt safe in treatment. People knew my name and knew exactly what I was going through.
I also looked like someone who had cancer so the world around me looked after me, but that was all coming to an end, and I was going to have to look after myself.
Throughout my treatment I learnt that your emotions are never what you expect them to be. I thought that my last day of chemotherapy would bring with it a feeling of relief, but what I actually felt was a huge sense of loss. Like it was the end of something that had been quite special. It’s a very intimate process and I was going to miss the nurses and the people I had met.
By chance, that final session coincided with the first appointment with my counsellor. That was a real blessing as this is when the tough bit started. Although my physical health had been treated, emotionally I started to fall apart.
I had to take the time to focus my energy on understanding my emotions and getting support for what I was feeling.
I found Target Ovarian Cancer and would speak to Val and the team of nurses through the support line. I also joined the Tea and Chat events for people with a diagnosis of ovarian cancer. There are so many times when we don’t talk about cancer but we know it’s there, and it doesn’t matter what we talk about because there is an unspoken understanding of the ever-present threat of recurrence we all face.
After mentioning my mental health to my oncologist on three separate occasions I started taking anti-depressants – that was a real turning point for me – and I started exercising again, with a physical trainer who specialised in cancer recovery.
Looking forward – sharing my story
Since my diagnosis I've found out that I too carry the BRCA 1 gene mutation and am now taking Olaparib, a PARP inhibitor maintenance drug that helps reduce the chance of the cancer coming back.
Target Ovarian Cancer has provided me with invaluable support throughout my recovery. I wanted to get more involved with the charity to help ensure that every woman who needs it has easy access to that same level of support and, perhaps more importantly, I want them to be diagnosed earlier and have access to treatments that reduce the risk of recurrence.
I was diagnosed at Stage 4b, the last line of the staging table. I wanted to share my story so other women who are diagnosed late know there is hope and that the treatments can, and often do, work. I hope sharing my experience will help others to remember the symptoms of ovarian cancer so they can pass them on – and/or spot them in someone they love to help them be diagnosed as soon as possible.
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.
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
