Ella’s Journey
My name is Ella, I’m 31 years old and I was diagnosed with Cervical cancer at the age of 25, following my very first cervical screening test.
My experience began in November 2019, when I attended my first cervical screening appointment when I was 24. At the time, I had no reason to think anything was wrong. I was young, generally well and certainly never imagined that attending a routine screening appointment would drastically change the rest of my life.
I attended and everything went well (as well as it can for a first time smear) – I was nervous but the nurse put me at ease and reassured me that it’s just precautionary and it’s very unlikely that anything would come from it.
The new year came around quite quickly and I hadn’t heard anything back from my GP regarding my smear, working in an acute hospital setting and assuming my results were just delayed I contacted my GP to chase the results. My GP reassured me and promised to chase the results.
I was driving home from work one evening and had a phone call at around 5:30pm from my GP practice, I was told the results had been delayed due to a change in the lab they used.
My GP then told me that my results appeared to show high grade cell changes and that they had been graded at CIN3 and to expect an appointment at the hospital for a Colposcopy to take some samples.
Eventually I received an appointment for a Colposcopy at my local hospital, the staff were wonderful but due to the position of my cervix, I was unable to tolerate the procedure and the nurse decided it would be best to have the Colposcopy under a general anaesthetic. At this point I still don’t think I truly appreciated what was happening or how serious things could be.
I attended a few weeks later for the second Colposcopy under GA, they said that they would do the treatment LLETZ to any high grade cell changes and I was told to wait to hear from the gynae team.
I carried on as normal after the procedure at work, and we were in unchartered territory with the new Covid restrictions. I’d been redeployed to A&E and was working long hours in a department I wasn’t familiar with. I received a phone call on the 26/03/2020 asking me to go into clinic that afternoon to discuss my results with the surgeon who performed the Colposcopy. Looking back I still didn’t really understand the gravity of the situation and didn’t expect what was coming.
I arrived at the clinic and I was taken in pretty much immediately, I noticed there was a nurse sat in the corner with a Macmillan badge on, this is when I realised that something was wrong.
The consultant gave me the devastating news that I had Cervical cancer – a Squamous Cell Carcinoma with a co-existing Adenocarcinoma.
The whole time I was there was a bit of a blur and it wasn’t until I got to my car that I broke down in tears. I was facing a cancer diagnosis at 25 years old, 2 days after the first national lockdown had been announced and a time where the whole world had been turned upside down by the pandemic.
I was told that due to my age, my care would need to be transferred to a specialist gynaecological oncology consultant at a special oncology centre in Cheltenham.
I attended my appointment alone due to Covid restrictions and met with a team of specialists where I had to make decisions about major cancer surgery and my fertility without my family being able to sit beside me. I opted to undergo a relatively rare procedure called a Radical Trachelectomy with Pelvic Lymph Node Dissection. This procedure removes the cervix, surrounding tissue and the upper vagina whilst leaving the uterus intact to preserve fertility. I hadn’t really thought seriously about having children at that point in my life, but I wasn’t ready to completely close that chapter just yet.
I was scheduled for surgery on 16/04/2020, the hospital was so quiet and there was just myself, one other patient and a few members of staff on the surgical ward, it was extremely eerie.
The surgery went well and I was moved onto a ward where I stayed for 5 days post op due to contracting pneumonia. As all of this was happening during Covid, and I had 2 very rowdy dogs at home, I decided to be discharged to my grandmother’s house, so that she could help me with my recovery.
My recovery was going well and I was due to have my catheter removed and have a post op check on the Friday morning. Unfortunately, on the Thursday evening around 11pm, I started bleeding excessively heavily, I managed to get to the bathroom and sit on the toilet but passed out from the blood loss. My grandmother called an ambulance but it took over an hour to arrive, eventually I was taken to resus in my local hospital.
The on call gynae team weren’t familiar with the procedure I had undergone just 5 days earlier and tried their best to stop the bleeding. That night is all a blur as I was in and out of consciousness, but eventually they did manage to stop the bleeding.
I was put on a ward and unfortunately suffered another 2 heavy bleeds, I was kept in to be monitored for a few days and on the 4th day of admission I suffered the heaviest bleed I had experienced yet, all I can remember is blood pooling around my tummy and onto the floor, it then got extremely busy around me. Again, I was in and out but I remember having a consent form put infront of me and staff telling me they may need to perform a full hysterectomy; this was when I realised that I may have the choice taken away from me of ever having a family.
I was rushed for an emergency laparoscopic surgery but ended up being converted to an open surgery, my consultant from Cheltenham was called to come and assist the surgeons at my local hospital.
It was found that I had a uterine artery injury, but the origin of the injury is still debated.
What had already been an incredibly frightening experience became even more complicated, and the physical consequences of my treatment were something I have and continue to deal with alongside the emotional impact of having cancer at such a young age.
I was eventually medically fit to be discharged from hospital and sent home with staples in my tummy, the first time I saw them was a massive shock, a scar from my belly button all the way down to below my bikini line was not what I was expecting!
Eventually I was well enough to return to normal life, I went back to work and started riding my horse again, this was something I was desperate to do!
For a long time, I thought that once the cancer was gone, I would eventually return to the person I was before my diagnosis. I have since realised, that cancer doesn’t necessarily work like that. You can be in remission and still be processing what happened to you years later. There are physical consequences, emotional consequences, questions about your fertility and future, and experiences that stay with you long after treatment has finished. Sometimes, the people around you see that you’re in remission and assume you’re okay and that you’ve moved on, but being in remission doesn’t erase what happened, I think it can be difficult for people who haven’t experienced cancer themselves to understand – you can be incredibly grateful to be here but still carry the emotional and physical weight of what you have been through.
Being diagnosed with cervical cancer at 25 has changed the way I view my health and my relationship with my body. It has also made me incredibly passionate about raising awareness of gynae cancers and encouraging women to advocate for their own health.
One of the things I feel passionately about now is breaking the silence and ‘taboo’ around female health and gynaecological issues, as I’ve gotten older, I now realise that I have nothing to be embarrassed about in telling my story or talking openly about these subjects.
Cancer can affect women of any age, and talking about specific gynae cancers should not be something we should feel embarrassed or uncomfortable about.
There is nothing shameful about discussing your cervix, your reproductive health, fertility, symptoms or concerns.
If sharing my experience encourages even one woman to attend her cervical screening, chase an appointment or result, speak to a healthcare professional about something that doesn’t feel right, or simply feel a little less alone in what she’s going through, then sharing my story will have been worthwhile.
