My terminal cancer was picked up too late – and I know why

‘You’ve got cancer and it’s terminal.’ 

Sitting on a plastic chair in a hospital room, aged 50, I stared at my doctor in shock.  

It was January 2023 and as the news sunk in, I felt fear, confusion; even anger. 

I’d been back and forth to the doctor like a yo-yo with back pain over the last two years but had always been sent away with painkillers. 

Now I was being told I was going to die; and I couldn’t help but feel my learning disability had played a part in my late diagnosis. 

I have a reduced intellectual activity, making it harder to learn, develop new skills and understand complex information. 

I was diagnosed as a child. I struggled at school and was bullied for being different. 

Now, I find it hard to manage money, so I get a regular allowance from my local council. 

I find planning and multiple instructions difficult – and when I’ve been ill I’ve struggled to be taken seriously. 

I’d gone to the doctor countless times with back pain but I found it hard to explain how bad it was. The pain scale didn’t mean anything to me and when I was asked if I could walk about as normal, I struggled to convey that sometimes I’d be fine, other times I’d be curled up in agony. 

And, though I’d had breast pain for some time, I didn’t realise it might be related. 

Someone without a learning disability might volunteer that information, questioning if there was a link – but it didn’t occur to me. No one ever asked if I had pain elsewhere until I was in hospital. 

My GP gave me painkillers and steroid injections. He was nice, often getting me in for appointments at short notice, but I’d previously had doctors and nurses dismiss my concerns or call me a ‘Drama Queen’. 

This all made it hard for me to say that I felt in my gut that something was wrong and to push for tests. 

In December 2022, the pain got so bad my friend rushed me to A&E. 

I was vomiting and felt like I was dying. I spent my 50th birthday in a hospital bed, having blood tests, X-rays and CT scans. 

The doctors found I had breast cancer that had spread to my spine. There was no cure. 

I sobbed and sobbed. I was only 50. 

Did I have just days to live? 

It was clear I’d need lots of support to cope with cancer treatment and I was allocated a Macmillan nurse, a learning disability nurse and support workers from learning disability charity Mencap. 

I started taking maintenance chemotherapy in tablet form to try and keep the cancer under control. 

Thankfully, I didn’t have side effects like nausea or hair loss but I was (and am) constantly in pain; I have a breathing condition called Chronic Obstructive Pulmonary Disorder (COPD), so I can’t take too much morphine as it could cause respiratory failure. 

The emotional side of cancer has been incredibly tough. I didn’t really understand what terminal cancer was. Luckily, my support workers were amazing. 

One of them, Cat Bell, explained it to me. She said we were on a train journey and at one point we would come to the end of the line, but we didn’t know how long that line would be. 

She was there to talk to when I was feeling low and we spoke about difficult decisions, like what I’d want my funeral to be like – I want a Mickey Mouse cardboard coffin and Beautiful Trauma by Pink to be played. 

Since my diagnosis, the support from doctors and nurses has been really good but I do wonder whether having a learning disability meant I was diagnosed late. 

Research shows women with a learning disability die on average 23 years younger than the general population; and Mencap is concerned about the additional challenges people with a learning disability might face in getting a cancer diagnosis. 

A Scottish study, for example, found people with a learning disability are three times more likely to die from cancer than people who don’t have one. 

This could be because some doctors assume a patient’s symptoms are due to their learning disability (when actually, something more worrying might be going on). I am told this is called ‘diagnostic overshadowing.’ 

But also, doctors and nurses need to make sure they are making ‘reasonable adjustments’. This means giving more time for patients with a learning disability to explain what’s wrong or encouraging people to have someone with them in appointments who can help speak up for them. 

Have you experienced diagnostic overshadowing? Have your say in the comments belowComment Now

It can also be as simple as easy-to-read information leaflets, longer appointment times or explaining things in a simpler way. 

The NHS needs to be set up for this, with enough staff so they have the time to give this additional support – and every NHS staff member should have learning disability training. 

I was really concerned to hear recently that the Government also plans to scrap the targets which would encourage GPs to do annual health checks for people with a learning disability. 

I want anyone with a learning disability who has worrying symptoms to ask a friend or relative to go with them to their doctor to help push for tests and I’d encourage people to look at the easy-to-read cancer information on Mencap and Macmillan’s websites. 

With Mencap’s support I am trying to live my best life. I have friends over for takeaways, dye my hair a rainbow of colours and spend time making my home nice, filling it with items from my favourite Disney films. 

My days might be numbered but I’m determined to live each one to the full. 

As told to Catherine Jones 

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