Coleen's story - I have a better sense of calm

Noticing a problem

I had initially gone to my GP with a sore shoulder and I was given painkillers.

This was at the start of the pandemic so I was not allowed to take anyone with me, not even an interpreter.

After a few weeks, I went back and got more painkillers. It was at this appointment that the physiotherapist realised that something more was going on.

I felt as if I had pulled a muscle in my shoulder, but when asked to lie face down on the treatment couch, I had to ask for a pillow because it was too painful.

I told them I had noticed a lump under my armpit that felt uncomfortable and I couldn't quite put my arm down straight. They said it would be better if I went back to see my GP.

My GP clinic was closed at that time, they were short staffed due to Covid. After a delay, I got an appointment with a nurse who found I had three lumps – one under my armpit and two in my left breast.

With masks, it wasn't easy to follow what was being said. This was such a big barrier for me. 

I was referred to the breast clinic in Larbert and that's when I was diagnosed as a cancer emergency.

Too many masks

At my first hospital appointment, the NHS booked an interpreter. Luckily they wore a clear visor and I could see their facial expressions which is really important for British Sign Language.

It was still very confusing with everyone else, as they all wore masks covering their faces.

I can lip-read a little but even that was impossible. It was a horrendous experience.

On another day, there was no interpreter and it was so frustrating, I really wanted them to pull their masks down.

I was bombarded with too much information and I ended up just nodding at them without understanding.

The doctor told me I had cancer and they were trying to explain all of my appointments to me, that I would need a CT scan, an X-Ray, an MRI and that I would have to take my temperature every day, but I couldn't take in all of this information.

The doctors tried to explain different things, from just having the lumps removed to having my full breast removed because there were too many cancer cells.

I didn't understand what they were telling me to do. This was a tough decision and I wanted it to be right, I wanted to save my life no matter what!

I kept thinking "what if I'm going to die, and it's too late? " This was because I'd asked the nurse "How big? " and she said, "quite big".

I was panicking but trying to be strong. I was so upset and just wanted to go home. The doctor suggested I go to the grief room.

Letting it all out

When I was moved to the 'grief room' I let everything out.

I was so emotional, the tears kept coming and I kept asking 'Why me? '

The interpreter who was with me told me she wished she could give me a hug but of course she couldn't because we were in the middle of the pandemic. It was a very difficult time.

Hard to understand

I was sent away with bundles of information, it was too much.

It was very difficult to fully understand all the information I needed about my diagnosis, and I needed notes to try and remember everything so I could show my mum and my husband Kenneth.

There were even times when I would get emails with questions from the nurses but, while I can read basic English, my first language is British Sign Language.

Many deaf people like myself find it difficult to understand complex English and certainly not medical texts which are much more complicated.

I would wait for my mum to come round to read the emails and explain them to me before I could answer them properly which also meant a time lapse between getting the email and my reply.

My mental health was not good

I was depressed for a long time and my mental health was not good. I'd had a full year of worry.

I felt upset, confused, frustrated and exhausted until I met Yvonne, a cancer support specialist and centre head at Maggie's Forth Valley. Thank goodness I did.

In 2021, I was referred to Maggie's to be fitted with a wig after chemotherapy. Yvonne helped to put me at ease and I felt we had a rapport straight away.

Even though I met Yvonne after my treatment was over, she explained all my treatment and medication to me which gave me a much better understanding of what I'd been through.

Kenneth, my parents and I all found a great deal of comfort through speaking with Yvonne and visiting Maggie's.

Making a recovery

Thankfully I am now cancer free. I still get treatment for my bones, and again Yvonne has explained everything to me.

I know what I need to do and I have a better sense of calm.

Before I found Maggie's I thought my cancer was going to come back but Yvonne helped calmed me down a great deal by explaining everything to me.

It's taking time, but with Maggie's and of course with the support from my interpreter Mary, who was later booked to attend all of my chemotherapy sessions and medical appointments as well as some radiotherapy sessions, I'm making small steps back to recovery.

I'm so grateful that I have found Yvonne at Maggie's.

I wish there was a Maggie's for deaf people but I want more deaf people to know that Maggie's is a place they can come to for cancer support.

We're here for you

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

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