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What's it like to live beyond an advanced cervical cancer diagnosis?

Posted on: Tuesday, 1st February 2022 by Rachael Rennie, media volunteer

This blog post discusses living with an advanced cancer diagnosis. Take care while reading, and contact our support services if you want to talk.

To look at me you would think there is nothing wrong with me. But just over a year ago, I was diagnosed with stage 4 cervical cancer when I was 39. 

"How did I get here?"

My diagnosis was initially stage 3, but soon after I was admitted to hospital, extremely unwell and in kidney failure which was so bad the doctors said I was about 1 hour away from dying. I woke to find I had bilateral nephrostomies (catheters with bags allowing urine to drain from the kidneys) fitted, and I’d had 2 rounds of kidney dialysis. I could no longer have chemotherapy as my kidneys were not strong enough. I now had stage 4 cancer: advanced cancer. 

Getting this diagnosis was awful. I cried for my past - how did I get HPV, how did I get here? Cried for my future, thinking that I might leave my daughter without her mum and all things I’d never get to do. Every time I looked at a picture of me BC (before cancer) or at a picture of my daughter, I cried.

I did have symptoms - back and leg pain, bleeding, but they're all things that could be attributed to something else. I was up to date with my cervical screening so I didn't think too much of them. Don't forget that screening doesn't stop every cancer.

Cancer is a lonely time and the pandemic made things worse. Not only were things like reflexology and counselling closed, I got Covid whilst receiving treatment. My treatment was paused and I was placed into isolation for 2 weeks. I only saw nurses who delivered food and meds to me at a distance. 

"It is often hard to talk to family and friends"

That was a year ago, but I still cry a lot. I really want to talk about the reality of living beyond an advanced cancer diagnosis and having gone through something so difficult that very few people can relate to. The Jo’s forum is the main place where we get together and share these stories as it is often hard to talk to family and friends. Everyone is different, but this is my take. 

After treatment, I was so desperate to get home and get back to being who I was before cancer. I was a Mum, a Police Officer. I quickly realised that this was not going to happen. I’m now me, plus the menopause, plus a bag, plus pain, plus strain on my mental health. It’s not as simple as I’d hoped it would be.

I don’t look like a “typical” cancer patient and that can make people forget what I’ve been through and what I deal with on a daily basis. I have all my hair because my kidneys packed in and that meant I couldn’t have chemotherapy. 

"I am not the same person that I was before cancer"

This is what it’s actually like. First thing in the morning, I get up and carry my night bag to the toilet to empty. Going away is difficult because of the bag, I worry about it bursting and leaking over the bed. I’m embarrassed that I carry a bag of urine like I used to carry a bag on a night out. It’s always a bit hairy when emptying the bag on the train, especially when it suddenly goes around a bend!

My friends organised a day out at a rage room, this was great fun but I got so involved in smashing things up, I didn’t notice that my bag had leaked all over my clothes and the boiler suit I was provided. My friends were great and just told me to “own it”.  So I strolled out past reception, covered in urine and headed to the nearest shop to buy new clothes. This incident reminded me that I am not the same person that I was before cancer.

I still don’t think I’ve come to terms with everything that has happened to me. I have been referred to a psychologist to help me discuss what’s happened.

"I recently had the go ahead to start back at work"

I had an appointment recently to get my nephrostomy changed. They carried out a nephrostigram and it showed improvement. I might heal enough to be able to get a stent fitted rather than the nephrostomy, but this is a big decision. Again, it’s the women on the Jo’s Cervical Cancer Forum I go to as they have their own experiences to compare to. I know stents aren’t straightforward - when they are good they are good, but they can cause pain and infections as well and I don’t know if the risk is something I want to take right now. 

I do 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 provides me with some normality. That’s why I’m really happy I recently had the go ahead to start back at work on modified duties, and on a phased return. I’m taking baby steps in the right direction.

"A battle suggests that it’s a fair fight. It’s not"

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. People that haven’t had cancer try to be positive and I know they are trying to be nice but they can’t see into my body. Just like people saying it’s a battle - a battle suggests that it’s a fair fight. It’s not. It doesn’t matter what I do.

I think people see me and think “she’s beat it”. I wish that people understood the effort that it takes to get up each day, so this brings me sadness. It’s an effort to keep a house tidy with a bag of urine hanging from your hip, whilst also trying not to move in a way that could cause it to burst off. That my body and my mind is still healing and it’s not always about staying ‘positive’, but sometimes about being realistic.

"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 that there was a recurrence after a scan showed 'changes', but thankfully there is no evidence of disease right now at my scans. I found this out on Christmas Eve - the best present I could ask for.

I’m fine after I get the phone call confirming that there is no cancer detected. But once the months creep up again, I start to overthink every little pain that I feel. The thought that there could be cancer in my body consumes me. But I do also think “Why can’t I be one of the few who do survive?”

If you are looking for support after a cervical cancer diagnosis at any stage, our 1:1 cervical cancer support service is for you. Sign up today >

Categories: cervical cancer