“I take life 3 months at a time”: what it’s like to live with advanced cervical cancer
Written by Rachael Rennie
In 2020, when Rachael Rennie was 39 years old, she received a shocking diagnosis: she had stage four cancer. Here’s her account of what it’s like to live with advanced cancer.
To look at me you’d think there’s nothing wrong with me. But in 2020, at age 39, I was diagnosed with stage four cervical cancer.
My diagnosis story
I was already having six-monthly checks after receiving an abnormal smear test result in 2018. But in May 2020, I started to get pain in my back and legs as well as bleeding. They were all things I could attribute to something else – I put the pain down to muscle strain through my job as a police officer.
Eventually, I went to my GP, who examined me and could see a growth. Ten days later, I had a colposcopy, but this time the doctor couldn’t carry out the procedure because the growth was blocking the entrance to my cervix. It was painful. There was a lot of blood.
At this point, the doctor prepared me for the worst – he thought it was cervical cancer.
My diagnosis was initially stage two, and I prepared myself to have chemotherapy and radiotherapy at a hospital 75 miles from my house. But, after a PET scan in August 2020, I found out that I was stage three.
Not long after I was admitted to hospital, extremely unwell and with kidney failure so bad the doctors said I was just an hour away from dying.
I woke up to find I’d had two rounds of kidney dialysis and I could no longer have chemotherapy as my kidneys were not strong enough. I now had stage four cancer: advanced cancer.
Cancer during the pandemic
Getting this diagnosis was awful. I cried for my past – how did I get HPV? How did I get here? I was up to date with my cervical screenings. But, don’t forget, screening doesn’t stop every cancer.
I also cried for my future, thinking that I might leave my eight-year-old daughter without her mum and all the things I’d never get to do. Every time I looked at a picture of myself BC (before cancer) or at a picture of my daughter, I cried.
Cancer is a lonely time and the pandemic made things worse. Not only were things like reflexology and counselling closed, but I also got Covid. My treatment was paused and I was placed in isolation for two weeks. The only people I saw were nurses who delivered food and meds to me at a distance.
“This is what it’s actually like”
After my treatment, I was so desperate to get home and get back to being who I was before cancer. I was a mum and a police officer. But, I quickly realised this wasn’t going to happen. Now, I’m me, plus the menopause, plus pain, plus strain on my mental health. It’s not as simple as I’d hoped it would be.
This is what it’s actually like. First thing in the morning, I get up and carry my night urine bag to the toilet to empty. Going away is always difficult because of the bag, I worry about it bursting and leaking over the bed. I’m embarrassed I carry a bag of urine like I used to carry a purse on a night out. It’s always a bit hairy when I have to empty it on the train, especially when it suddenly goes around a bend.
My friends organised a day out in a rage room, which was fun but I got so involved in smashing things up, I didn’t notice my bag had leaked all over my clothes. My friends were great and told me to “own it”, so I strolled past reception covered in urine and headed to the nearest shop to buy new clothes. It reminded me that I’m not the same person I was before cancer.
I get really tired, which could be due to long Covid, the radiotherapy or the menopause – or a bit of all three. But when I’m busy and occupied, I feel much better. It distracts me from thinking about whether or not the cancer has spread and gives me some normality. I’m happy I recently got the go-ahead to start back at work on modified duties. It’s baby steps in the right direction.
“I don’t look like a ‘typical’ cancer patient”
I know people find it hard to talk about cancer, but it’s also hard for me to speak about how I feel to someone who’s never had cancer. I have dark thoughts and knowing who to share them with isn’t easy, so I try to paint a smile on as it’s easier for everyone if I’m OK. I still don’t think I’ve come to terms with everything that’s happened to me. I’ve been referred to a psychologist to help me discuss what’s happened.
People that haven’t had cancer try to be positive, but they can’t see into my body. Just like people saying it’s “a battle” – a battle suggests it’s a fair fight. It’s not. It doesn’t matter what I do. My body and my mind are still healing and it’s not always about staying positive, but sometimes about being realistic.
I don’t look like a “typical” cancer patient. I have all my hair because my kidneys packed in which meant I couldn’t have chemotherapy. That can make people forget what I’ve been through and what I deal with on a daily basis. I think people see me and think “she’s beat it”. I wish people understood the effort it takes to get up each day.
“Why can’t I be one of the few who do survive?”
I take life three months at a time – the amount of time between my scans. I recently had a scare after one scan showed ‘changes’, but thankfully there is no evidence of disease right now. I found this out on Christmas Eve 2021 – the best present I could ask for.
I’m fine after I get the phone call confirming there’s no cancer detected. But once the months creep up again, I start to overthink every little pain I feel. The thought there could be cancer in my body consumes me. But I also think: “Why can’t I be one of the few who do survive?”
For support on any issues surrounding cervical cancer, Jo’s Cervical Cancer Trust is the UK’s leading cervical cancer charity and provides trustworthy information, campaign for change and support at every step. Ring its national helpline on 0808 802 8000.
Images: Rachael Rennie
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