Marilyn on becoming herself again with stage four cancer

I have had different health problems throughout my life; I have asthma and I was diagnosed with lupus in 2008. But I am also a DJ, a contemporary dancer, and I used to work as a receptionist in London.

I would do different contracts in different workplaces across the city, my favourite was at the Serious Fraud Office. I was buzzing; I loved the work and the money was good. I took pride in my appearance, loved to wear makeup and go clothes shopping.

Cancer diagnosis

In 2020, my chest was very tight and I had a bad cough. I thought it was my asthma playing up. But I couldn’t breathe properly. I was rushed to hospital and had tests done, but thought nothing of it.

I was called back into hospital. I heard the doctor say "I’m so sorry Marilyn, it's cancer". Once that word ‘cancer’ is said there's no sound, nothing. Everything around you goes blank. My doctor kept talking but I heard nothing.

I should have had support at that appointment, but I was on my own. I was so devastated. Once I left the room, I screamed the place down. I got home and continued to lash out, breaking glasses and drinking anything I could find.

Difficulties with care

My treatment would be radiotherapy, which I started in November 2020. At the initial appointment, I was asked to sign a treatment consent form. I was asking all these questions about how it was going to affect me. I didn't feel like I had much explained to me. Again, I was on my own.

The form was so small I couldn't read it. I was being asked to sign my consent for intense treatment but I couldn’t even see where the box was to sign in. I have a visual impairment; many people with learning disabilities have some sort of visual impairment. I said ''If you want me to sign, have some patience, because I'm not going to sign anything until I know what it says".

Some people don’t listen to people like me. It doesn't matter how many times I try and I find that so frustrating, even today.

At my appointments, I just need somebody to sit down with me. I need time, consideration and empathy.

How cancer affected my body

How I look has always been important to me. Cancer really changed my body and that was a real shock. The cancer was almost eating my body up. I’d look at myself in the mirror and think ‘why is my shoulder bone sticking out like a sore thumb?’ When you are nearly 6 foot like me, it is dramatic.

I began falling a lot and dropping things all the time. It felt like one minute, I was walking, no problem. But slowly, I became less able to.

Unfortunately, I learnt that the cancer isn't ever going to go away; it is stage four and there is no cure.

I don't need anyone to take my hand, but my doctors understand and take their time. They joke with me and actually talk to me. That's what good care looks like and it makes such a difference.

I have feelings, people with learning disabilities have feelings. I used to be able to walk, dance, run. Anyone can become disabled after an accident, it's not just people who are born with disabilities. But we need a lot of communication. We need time and not a rushed, tick-box exercise. I think if everyone practiced that, the world would be a better place for people like me.

Maggie’s

When I came over to Maggie’s for the first time, I felt so welcomed. Here, I have time to debrief, to lash out or scream, or to just take a breath. Cancer is a serious subject, but there is always laughter here.

I go to the monthly advanced cancer workshops, which are great. I’ve learnt about fatigue, how to relax, and body image.

The relaxation sessions are absolutely phenomenal. It really helps me sleep. That's what my cancer body needs. When you have cancer, your sleep can be really broken because of the pain. That's why the relaxation is so helpful.

The body image session was my favourite. There's a feel-good factor, I can just be myself. Someone always asks how you are. Talking to people at Maggie’s made me decide to just rock it, and I've learnt how to become me again with stage four cancer.

I rock it with my hair, right now it’s blue but I wear lots of different wigs in bright colours. I hated how my figure has changed, but now I rock that too. My body doesn’t always work, but I’ve got my electric wheelchair so people had better get out of my way!

I've got God by my side, I still have my mum and dad in my heart and my head, and these fantastic people at Maggie's. No one's me. And this is who I am. I'm Miss Maz-i-licious and I'm delicious!

Learning disabilities and cancer

I want everyone to know that people with learning disabilities and cancer are still people. The most important thing I say about learning disability needs and cancer is that you need to give us time when you’re telling us important things to take it in. Prepare the paperwork in an accessible way.

Maggie's, just by being here, has helped me stay strong and get through. They listen. They don't advise but they just give you what you need. I've learned a lot through coming here and I think some hospitals could learn a lot from Maggie's. Hospitals can be cold places, but the people and the building at Maggie’s are warm.

Maggie's help me do the things I used to be able to do before cancer damaged my body. I would feel lost without these guys.

I think other services would benefit from looking at how Maggie's treats me. If Maggie's can be accessible, then other places can be too.

We’re here with you

Our cancer support specialists, psychologists and benefits advisors are here for everyone with cancer, and all the people who love them.

Come and see us at your nearest Maggie’s, call us on 0300 123 180 or email us at enquiries@maggies.org