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.

Additional support information:

Anonymous
  • Hi eddiel,

    I'm sorry to hear about the challenges you are experiencing with accessing additional support. Why not give our teams on the Macmillan Support Line a call. There are Nurses, Support Advisers, and our Money and work teams on hand to help. 

    To get in touch please do call 0808 808 00 00, send an email or use live webchat from 8 am to 8pm every day. 

    I do hope as a member of the Online Community, you are finding connecting with others to be a comforting source of support- especially when you can't sleep as the Community can be accessed 24/7.

    If you need any help using the forum or finding support, please do get in touch. 

    Best wishes, 

    Megan
    Macmillan's Online Community team

  • Thank you Jules.. I spent so much time being angry and fighting for my sister during her cancer journey. Had to fight for my mum during the end of her journey which took place in hospital, and now I’m doing the same for myself & my son has had to intervene on my behalf several times..  Its so very tiring during a time when you just need someone to wrap their arms around you and make you feel safe xxx

  • Hi Megan, the online community is wonderful, i wish i had found them much earlier, i was turned down for sleep therapy this morning, even though i have been told i have long term insomnia at least 26 months and i have terminal cancer and heart conditions "my heart really needs me to sleep", i do not qualify, i am thinking of asking my cardiologist for help but do not want to put in an awkward position, i do not know where to turn to,  this is my lowest point since diagnosis.

  • Hi eddiel,

    That’s great to hear how helpful you have found the Community to be. We are so glad you have found us! Green heart

    I’m sorry to hear how the sleeping issues are affecting you, why not give the Nurses here at Macmillan a call? They can chat through some of your sleep concerns and talk through what other options there are.

    If you think this would be helpful and want to get in touch, please call 0808 808 00 00 for free. They’re available to help 7 days a week from 8am-8pm and there’s also the option to send an email or use live webchat.

    I do hope you can access some support to help you sleep. In the meantime, you may find it helpful to read our ‘Awake and can’t sleep? Some help with getting you through the night’ blog. It includes some tips but may also help you to feel less alone.

    Please remember that the Community can be accessed 24/7 so if you can’t sleep, do consider logging in for some company if you are awake.

    Best wishes, 

    Megan
    Macmillan's Online Community team

  • Hi Jules,

    It's worrying that you don't get any oncology reviews following CT results. I'm not surprised the pressure is on you to chase it up. I think I may shortly be in the position of no follow ups for a year myself. I saw you on Macmillan's Instagram page.

    A x