What felt even better than connecting was being able to help somebody – Eddie on the power of sharing stories

Wednesday 08 November 2023

Maggie's Edinburgh

My story begins seven years ago, when I was 71. I started having problems with my breathing.

It felt like something was on my tongue, but I didn’t think much of it to start with. It began to feel more and more sore so I went to a doctor who sent me to A&E.

They told me the problem was caused by cancer. I went white. I just couldn’t believe it.

Losing my tongue 

I had a biopsy where the doctors put a needle through my tongue. That was the most sore part of the whole process.

It revealed that the cancer was all over my tongue.  

There were a few treatment options, but I decided that the one which made sense was an operation to remove almost all of my tongue – nine tenths of it.

I was really scared and unsure if I’d made the right decision. But on the flip side, this would remove the cancer. I thought we might as well go for it.  

Adjusting to a new life 

Waking up on a ward with no tongue was very scary. I had nightmares and when I tried to talk for the first time, almost nothing came out.

One of the hardest things was when my sister came to visit and she couldn’t understand a word I said.

I began writing things down on a notepad. But I had no real solution to the fact that eating was now impossible. I had no tongue to help me swallow and no teeth to chew.

I used to be a chef at a hotel when I was younger, and food was one of the things I liked the most. I hated having to ignore the food trolley every time it came around.

During the first year after my operation, all I had was protein drinks through a tube in my stomach. I had the tube for three years. 

Very few people understand what it’s like to enjoy food for over 70 years and then lose that. 

As I got stronger, I wanted more and more to try to eat something. I knew that with my background as a chef, I could find a way to enjoy food.

I learnt quickly that you must go very slowly, with small amounts, because your stomach isn’t used to food. But I persevered.

The next step was buying a blender which let me start to eat things I enjoy again, in a liquid. I was delighted! 

Finding Maggie’s 

I’ve been coming to Maggie’s in Edinburgh for about seven years since my doctor told me to visit just after my operation. They’ve been amazing since the very first time I came in.  

The whole team has got to know my character. They’ve taken the time to get to know me and understand me.

The best thing about Maggie’s is that it’s a place where I can feel totally relaxed. You don’t have to talk if you don’t want to.

The atmosphere, the garden – there aren’t many places that make you feel this way.

I began volunteering at Maggie’s, using my expertise to teach people how to make soup which felt very good. 

I also love photography, so I take photos around the centre – about 50 every time I visit! 

Andy, the Centre Head, mentioned that another centre visitor, Anne, had the same operation as me. He asked if I would like to talk to her.

I thought that sounded nice; I had never met anybody who had been through the same thing.

Now my story has helped others

Anne was finding her recovery difficult. We met at Maggie’s and began by discussing things she liked to eat.

That was what helped me the most – taking back a little control over what I eat, and knowing you can still live a life you want to live.  

Meeting Anne has been absolutely amazing. My cancer is really rare. The chances of meeting someone the same age who has had the same thing, someone who understands what it’s like to have the love of food taken away, is so slim.

But thanks to Maggie’s, that’s what happened.  

What felt even better than connecting with Anne was being able to help somebody. I hoped that I could help others in the same way and, sure enough, there’s a visitor to Maggie’s in Oxford who has had the same operation.

I wrote up a little bit about me to send to her and now I’m helping even more people. 

We’re here for you

If you or someone you love has cancer, Maggie’s is here with you. 

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

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