November is lung cancer awareness month and today, we are sharing Jules’ story. Jules was diagnosed at 37 in November of 2021 with stage 4 lung cancer, which has since spread to her spine and pelvis. As her cancer is incurable, she relies on her three-monthly CT scans to tell her if she’s clear to have another three months to live.
She continues to live life with her partner and son to the full, but constantly feels she has to advocate for herself to get the care she needs, leaving her feeling angry and frustrated.
When you get your cancer diagnosis, there isn’t an instruction manual. I feel like I have to fight and advocate for myself. If I didn’t, I’d be left behind. When I’ve had a scan, I get on it literally a few days later emailing my team to see if my results are in. If I don't push for it, I don't know how long I would sit in the system before I'd get called and be told my results.
This is particularly important as a stage four cancer patient. I can’t be failed now in the medical system. I have to be at the forefront of my team’s mind because my life could change dramatically overnight. I am constantly fighting to live.
That’s why I have a scan every three months. When I get my results, I know I’ve got three months clear until the next one. Every single minute is crucial in a stage four cancer patient’s journey because your options are so much less. I’m incurable, I’m inoperable. I've got only four to five treatment lines available.
The pressures on the NHS are already showing, and it’s heart breaking.
Last month when I went to hospital to get an injection that’s part of my treatment plan, I was unable to have it because there was a two hour wait in the ward. That’s the first time that this has happened in the last year. I was really rushed through my appointment because they were trying to cater for everyone, and I got booked in for the wrong blood test, and my prescription wasn’t ordered. You really want this part of your journey as a cancer patient to be smooth running, but these pressures are making it harder and harder for that to happen.
These pressures mean that I don’t get any calls or check ins. Nothing.
I only get to speak to my team if I actively chase and fight for some time from them. It really scares me.
The government need to listen to the voice of the frontline workers and understand their concerns. My team are the most magical people in the world because they’re keeping me alive. Others need to not only understand how special these people are and what they actually do, but also what a devastating impact these pressures are having on them, and on people living with cancer who feel they have to fight to not be forgotten.
It scares me how much I have to advocate for my cancer care. With my diagnosis, I know that one day I will become that person who will need an abundance of care very quickly. I really do worry what that day will look like.
We’d like to thank Jules for sharing her personal experiences in our Community news blog. We hope you have connected with Jules’ story in some way and found it comforting to know you are not alone with facing challenges in your cancer care.
The Community is a space for you to share your personal experiences and chat to others who can understand how you are feeling. Join our Cancer forums today and connect with other Community members today.
