Emma (she/her)

What type of cancer were you diagnosed with, and when?

I was diagnosed with Chronic Myeloid Leukaemia in October 2021, on my 34th birthday. I’m 37 now.

How did you find out you had cancer?

I had been ill with a viral infection for a week before. I woke up on the morning of my 34th birthday and I felt lousy. I phoned my doctor’s surgery to ask for an appointment and a sick line as I was due back at work that day. I had a phone consultation with my GP as they weren’t seeing anyone during the pandemic. I went through my symptoms and described the viral infection symptoms I had (as this is what I thought it was). The GP prescribed me antibiotics and a sick line for a week which would be ready to be collected later that day. Shortly after the phone call, I started vomiting up blood. I didn’t know what this was. I then collapsed in my house later that day and my mum phoned an ambulance. The ambulance took 2 hours to come and at first, they thought I had a head injury as I kept going in and out of consciousness. I got taken to A+E and it was a long night getting sent for x-rays and scans to find out why I collapsed and why I was vomiting blood. I was told that I had a burst stomach ulcer, needed to be admitted to hospital, and needed surgery because of internal bleeding. After more tests, they then asked if I knew I had blood cancer. They thought I had AML (Acute Myeloid Leukaemia) at the start because of how I was that night, but it was my stomach ulcer that made me worse.

What did you think and feel when you were diagnosed?

I felt scared and I just kept saying to my mum ‘I’m not ready to die’. I just kept thinking of my younger nieces and my niece at the time was just born a month before this all happened. I just kept thinking that I’m not going to see her grow up and it got me upset.

How did the people around you react?

My family, friends, and colleagues were just so shocked and couldn’t believe it. I was a healthy, active individual who went to the gym and went running 3-4 times a week. I always remember my mum saying to the nurses and doctors I was the fittest and healthiest one in the family before this happened.

What treatment did you have, or are you having?

I started off on 600mg of imatinib, which got lowered to 400mg. I changed medication 5 weeks ago to 100mg of Dasatinib. I feel I am doing a lot better on this now. The side effects were horrible on imatinib but apart from the first 2 weeks of Dasatinib, I am doing a lot better and my body is adjusting to this new medication. I take an anti-sickness tablet along with my Dasatinib every morning, as I do feel a bit nausea if I only take the Dasatinib tablet.

How are you feeling through treatment?

At the start I was in hospital for 5 and a half weeks due to my stomach ulcer and getting the bleeding under control. I was also delayed starting treatment straightaway because of my stomach ulcer. I was feeling very scared at the start, not knowing what the future will hold, but as time went on, I’ve learned to adjust and live my life as normally as I can, but listen to my body and rest when needed.

What’s facing you next in terms of treatment?

At the moment, I go for bloods every 4 weeks. I’ll hopefully be moved back to 12-week check-ups shortly and will continue to be on these check-ups for the rest of my life. I get my levels checked every 3 months. At the moment, I don’t need a stem cell transplant and my consultant is hopeful I won’t need one as my leukaemia can be controlled with the medication for the rest of my life. The aim is to get as close to being undetectable as possible. I’ll never be cancer free or in remission, but I’m okay with that as long as my little magic pills keep my leukaemia at bay.

How did you get involved with Shine?

I was buddying a girl from another cancer charity, Leukaemia Care, and while were chatting, she mentioned Shine. I hadn’t heard of Shine before but I looked them up, listened to a few podcasts, and attended a Chronic Cancer chat. It was when I attended the online chat that the facilitator also called Emma suggested I post on the private Facebook group to ask if anyone from Glasgow would be interested in a support group in the Glasgow area. My fellow network leader Rachel replied and said she would love this, so we spoke to Fiona and managed to get a Glasgow network set up in August 2024.

What difference has Shine made to you?

Shine has been an amazing support to me. I’ve been to other cancer support groups and I attend my local hospice support groups regularly, but the people in these groups are all not at my age. It’s great meeting up with our Glasgow network and chatting to people who understand get what I’m going through.

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

Looking back, I think I displayed the symptoms and signs of leukaemia in the weeks leading up to my diagnosis – I had infections, I was tired more than usual, I had bruising & bleeding. I’ve learned to listen to my body more. It’s forced me to slow down as I was always on the go. I sometimes still can be one of those people that tries to do everything at once but I need to listen to my body & my body tells me if I’ve done too much that day. I’m normally paying it for the next day with the aches and pains and struggling to get out of bed.

If you could give one piece of advice to yourself before your diagnosis, what would it be?

Listen to your body. You only have one body. Look after it and you.