Giving Womb Cancer A Voice – Fay’s Story

Fay, also known as @cancercampaigner to those on Instagram, is an inspiration. Diagnosed with stage 3 womb cancer in 2021, after 2 years of symptoms initially assumed to be caused by the perimenopause. Following treatment Fay began to campaign to get the symptoms of ALL gynaecological cancers on related packaging, such as sanitary towels and toilet paper. Bodyform have responded to Fay’s campaign but there are more companies out there who can help spread awareness of gynaecological cancers and the #checkyouout campaign continues.

My Womb Cancer Journey

I look back now and realise that when I went to my GP towards the end of 2019 to discuss what I had presumed was perimenopause was actually the first symptoms of womb cancer. I had gone with symptoms including night sweats, anxiety and fatigue, but also irregular bleeding while on the pill when I normally didn’t bleed, and sometimes it was excruciatingly painful. Without any further investigation or tests the GP agreed with me that the symptoms were caused by the perimenopause.

Because that’s what I was told, and because of covid, it took me a year to go back to my GP to get my worsening symptoms investigated. At this point I was suffering with pelvic pain, almost daily pink watery discharge, lower back pain and problems going to the toilet. My GP referred me for a scan and to Gynaecology. By March 2021 I had heard nothing regarding the scan and just a letter to say I was on the waiting list for Gynaecology. My symptoms had worsened and so had my mental health. I went back to my GP and was referred to Gynaecology, again, told that the scan had been cancelled without any reason, and I was told to double-up on my contraceptive pill for 3 months to see if that made a difference. I followed the advice. For 3 months I had terrible fatigue and struggled to walk. All my symptoms worsened, so in June 2021 I went back to my GP. I still hadn’t heard from the Gynaecology team. My doctor finally did an external examination and sent me for a blood test for CA125. This came back raised and I was put on the 2-week referral pathway. On 5th August 2021, roughly 2 years after my symptoms started, I was diagnosed with womb cancer.

The biggest shock wasn’t that I had cancer, but the fact it was womb cancer. I was expecting ovarian or cervical as those are the two we hear mentioned all of the time. Womb cancer is more common than both of those, but at the time I’d never heard of anyone with womb cancer. Why is that when nearly 10,000 people are diagnosed with it in the UK each year? I agreed to a full hysterectomy and my surgeon reassured me it was stage 1 and nothing to worry about. He apologised when the histology came back as stage 3. The new staging resulted in me having to go through 6 rounds of chemotherapy, 25 rounds of radiotherapy and 2 of brachytherapy. It all went pretty well, apart from having severe anaphylactic shock from one of my chemotherapy drugs, paclitaxel. Very scary! But, I got through it with support from family and friends.

After treatment ended, and really struggling with side-effects and my mental health, I decided I needed to do something to turn my cancer journey into something positive. I heard about the fabulous ‘Bowelbabe’ Dame Deborah James and her campaign to get the symptoms of bowel cancer on to toilet paper packaging and I decided I would follow suit with a campaign to get the symptoms of ALL gynaecological cancers and resources on to packaging for related products such as period products and toilet paper. My campaign #CHECKYOUOUT gained momentum, and has been shared and liked by Julia Bradbury, Dame Kelly Holmes and Zoe Ball to name a few. I am persistent, posting on Instagram and tagging companies such as Tampax, Always, Bodyform and Andrex. The first company to agree to make some changes was Andrex. They told me that they would be adding the information to their website! Then, in December last year, Bodyform contacted me to say that my campaign had inspired them and they would be changing the QR code that was already on their packaging to go directly to The Eve Appeal website!! How amazing is that!! The Eve Appeal are the main charity for all gynae cancers in the UK and have a wealth of information on their site, plus a wonderful nurse-led advice line. I’m so proud of this fantastic outcome, but I still want other companies to make the changes too, so my campaign continues…

Although I would never have wanted to go through this experience, I wouldn’t be campaigning without having received my diagnosis, and this amazing outcome with my campaign makes it all worthwhile if it means just one person gets an early diagnosis and doesn’t have to go through the trauma of advanced cancer.

Fay Peace