Being your own advocate- Jules’ stage 4 lung cancer story

3 minute read time.
Being your own advocate- Jules’ stage 4 lung cancer story

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.

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  • Thank you for sharing your story Jules. I can really relate to what you said.

  • Thank you Jules for sharing your experiences. I totally agree that you have to fight your own corner and chase up everything. It does wear you down but it's the only way especially in todays NHS. Kind regards. 

  • Thanks for sharing, Julie.  I’m finding the same, I have to chase and even harass people so I don’t fall through the cracks.  Following my first thoracic surgeon appointment I received the follow up letter, sent to ALL my medics,  they’d mixed me up with another patient, half the info was completely wrong, and this was the evening before the High Risk MDT discussed me.  Luckily I knew who to ring and what to say but many wouldn’t have.  I blame the government and lack of funding, the teams are all working more than flat out, no wonder mistakes happen.  All the very best to you. X

  • Hi Jules as a someone else with terminal cancer sadly it seems the cracks are opening. I must say most of my experience has been really good, but the set backs really hurt. i have turned up for scans only to find they have not ben booked in, been discharged from hospital half way through tests because someone never read my notes properly, turned up for tests which i needed to prepare for but was not told to. trying to get a sleep therapist, my sleep has been really bad for over 2 years, takes 2 to three hours to fall asleep then up 3 to 8 times after that, on a good night i get 3 hours  and as you probably know lying awake in the dark you can have some pretty dark thoughts which make sleep even harder, anyway i do not qualify. It costs me over £1000 a year for incontinence products yet i am deemed ok no help needed, I am sorry i am ranting Jules but as you say we are walking a tightrope every day physically and emotionally, it is not easy to stay up and we do not need anything shaking the wire. please take care, Eddie

  • Hi Shortyshortshort, I am sorry this was your experience. If you need additional support and want to speak to our professionals on the Macmillan Support Line, please do call 0808 808 00 00, send an email or use live webchat from 8am to 8pm every day. 

    I hope you have access to the support you need but if you need any help finding the support you are looking for, please do let us know as we are here to help.

    Best wishes

    Macmillan's Online Community team