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Ali on stage 4 advanced cervical cancer

I can still remember the smear test that led to my first cancer diagnosis. I felt really lucky I was able to make my appointment – it was the Beast from the East snow in 2018, everything was getting closed down but since my doctor’s surgery was at the end of my road, I was able to walk there. The letter a week later said there were cell changes but I didn’t worry as friends had had similar things with their smear tests but had always been fine.  

I went to an appointment at my local hospital and they did a LLETZ to remove the cells, which they initially thought was successful but the results came back showing that cancer had been detected.  

It was when I started my treatment that I heard about Jo’s.

I was getting weekly chemo, daily radiotherapy plus brachytherapy. Because I was the youngest person at the hospital, I felt like I shouldn’t be there – I felt isolated with my diagnosis. I used the Jo’s forum a lot to learn about brachytherapy treatment, not posting anything, just reading people's experiences and learning more about what helps, what to bring to hospital etc. I finished my treatment in August 2018, and started doing counselling around my fertility and the changes to my body through my local Macmillan centre. I was finally ready after treatment to start facing everything I had put off while I was in survival mode, just getting through treatment.  

Then it was waiting for my follow up scans, every 3 months, then 6 then to a year. My yearly scan falls in January  My first yearly one came back fine, and the following year came back fine too. After you have a few clear scans, you start to think ‘I’m nearly there’ but in 2021 I really felt like something wasn’t right. I had spent Christmas day on my back in my parents’ house, I had been having really bad back pain and  feeling a bit breathless – all things that I found out later are signs of secondary cancer. 

When I was told I had stage 4 “incurable” cancer I just zoned out. I couldn’t take it all in. I was lucky to have my friend with me as I knew it wouldn’t be good, it’s weird to say but you just know sometimes. It  Noone had told me what to look out for and if I had known the secondary signs of cancer maybe I would have pushed for my scan earlier – although it would have unlikely have changed the outcome.  

I’ve been on really hard palliative chemo for a year now. I’d been trying cold caps too on my first few treatments to try and keep my hair, but I ended up with a bald patch on the top anyway which I really didn’t like so took the power back and shaved it all off. Shaving my hair was something I was scared of (which I know sounds weird when you are told you have a terminal illness) but it was, and from speaking to so many others in a  similar situation they felt the same. However, once I did it, I felt so much better and empowered about my choice. I have embraced the bald but you can find some great reasonably priced wigs out there, Amazon has some great cheap ones! 

I’ve had great support since my diagnosis.

My family are great, my parents live close by and my brother and his family live up the road. They help me  to my appointments, help with food and generally have been an amazing support to me. With friends, some have been flaky at times but then there are others I had reconnected with after a long time. And then there are my constants, those friends who have been great since diagnosis and are super reliable and there for me anytime. You get used to asking for a bit more help, like with my neighbours who help with my shopping or looking after my cat. My work has been really supportive – and staying working has been so important. Cancer takes so much of your identity away and keeping my job has really helped with that.  

The first time I had cancer I felt very alone with it. This time it's different. I’ve shared more on social media, made some amazing friends and created links with others with similar diagnoses. While I had done counselling after my first treatment, this time I get a lot from sharing on socials. There’s a sisterhood online that has been amazing. You learn so much from other people who have gone through it. Cancer is difficult to understand if you haven’t been through it. When you connect with others in similar situations you don’t have to justify things or explain yourself, it's really nice not having to hide anything or worry about upsetting someone by being so honest about how you are doing. 

Everyone ends up on a slightly different treatment path.

I’ve had 15 treatments of palliative chemo so far and my scans are showing shrinkage which is amazing and I hope it continues that way.  What I have learnt though over the last year is the need to advocate for yourself. Make sure you research and take ownership of your treatment. I’ve found you need to know what you can ask for and chase up on. My best friend Lauren comes with me to appointments, and we’ve done loads of research. We have learnt so in such a short space of time. That’s how I found out about different options like immunotherapy (Keytruda) and I’ve been asking my oncologist if I can get the test done to see if I’m eligible. Knowing your own worth and fighting, literally for your life takes a lot of energy. One thing I would advise anyone newly diagnosed is to get yourself the best support team. This could be made up of friends, family, professionals, social media friends and whoever else brings positivity and strength to you. The only other thing I would like to share is no one is guaranteed tomorrow so live, and not just get through day to day, live fully! Cancer or no cancer! I know I will, I chose not to live in fear, but to live in hope, with laughter, with adventure and with love! 

 

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Last Updated: 
22 Feb 2023