Emma's Story
"My mum used to come with me to my appointments, and the other people in the waiting room would expect her to get up when my name was called."
“The second I walk into the doctor’s room, people would say things to my mum like, ‘I didn’t realise she was the patient, I thought she was here for someone else’, and that they were surprised that ‘someone so young and who looks so well would have cancer’.”
Emma Butler, 32, from Dublin was diagnosed with Chronic Myeloid Leukaemia (CML) in August 2022. It’s a rare cancer that commonly affects adults over 60 and is more common in men. Emma had been experiencing some seemingly mild symptoms in the months before her diagnosis but decided to see her doctor when her periods stopped.
“I had fatigue and I had night sweats, but it was during the summer, and I was really busy with work, so it was easy for me to write those symptoms off,” she says. “I do remember that I could feel the blood moving around my body, it felt like treacle. It was a really strange sensation.”
“Then, suddenly, my periods stopped. I went to my GP, and they said they’d do a full blood count. I got a call a couple of hours later, telling me that I had to go into hospital in a couple of days for an appointment, so it was very swift.”
Emma’s GP appointment was on a Thursday. The following Monday, she went to hospital and was given a provisional diagnosis of CML, which was later confirmed by the results of a bone marrow biopsy. In the time between her GP and hospital appointments, Emma ran through all the possibilities.
“I was worried, but mostly I didn’t want to be dramatic. I thought maybe at most, I had a bad infection or an ectopic pregnancy because I knew it was more serious than a simple GP visit or antibiotics.
"When I went into the hospital for the appointment, I was told to go to clinic four. I didn’t know what that meant, but when I got there, I saw posters all over the walls about oncology haematology and I thought, ‘Well, this doesn’t look good’."
“When I got the diagnosis, I went into shock. I couldn’t remember a lot of what I was being told, but I remember feeling worried about whether I was going to die. The doctor kept saying the term ‘blood disorder’, so I asked, ‘Does that mean I have cancer?’ and they said yes.”
Emma says her diagnosis changed her expectations of what she thought her life would be like.
“When I was leaving the hospital after being diagnosed, with my chemo tablets and a pamphlet in hand, I didn’t know what to expect. I was only 29. I had an image of what my life would be like – I’d just moved in with my partner, but shortly after I was diagnosed that relationship didn’t work out anymore. I thought because my period had stopped, that maybe I’d been pregnant, but it was actually cancer. I had to move back in with my parents, which has been great but it’s not where I thought I would be.”
A few weeks after she was diagnosed, Emma stopped taking oral chemotherapy and started a targeted treatment called Tyrosine Kinase Inhibitors (TKI’s). The treatment is going well, and Emma continues to be monitored on a three-monthly basis.
She stressed how grateful she is to both her medical team and her psychology team who have been an incredible support to her along this journey.
“I am very lucky to have a team of people who have been able to guide me in this new path of my life. Their support has been immeasurable and has inspired me to pursue studies in psychology in order to return the help I have been shown to someone else.”
An unexpected aspect of her experience of cancer has been the financial impact.
“My cancer isn’t covered by the medical card, even though I’ll have it for life. I can’t understand it. I don’t have a type of cancer that can be cured, so I’ll be on treatment forever. I have to get the same meds every month on the Drugs Payment Scheme, so that’s at minimum, €80 a month.
“I have a low immune system so when I get sick or have an infection, which is often, I have to see my doctor but it’s €75 every time just for the appointment.”
Emma is sharing her story to show that life does continue after a cancer diagnosis. While she experiences side effects from her cancer treatment, like fatigue, high temperatures, heart palpitations, infections and bone pain, she’s still able to live a full and happy life, and she has a positive perspective on her experience.
“Whilst it’s changed my life completely, I also feel it’s helped my life, because it has changed my perspective on what matters and what’s important. My sister jokes that cancer was the best thing to ever happen to me, because I’ve become far more confident and assertive, I’m able to hold my own a lot more and I now understand how capable I am. It’s also given me the drive to make positive changes in my life.
“Cancer isn’t always the end, and it doesn’t have a set image - you never know what the person next to you is going through, so treat people with kindness.
"It’s also important to remember, with constant advancements in medicine, a lot of people these days will go through their cancer journey and come out the other side. Getting my diagnosis wasn’t the end of my life, it was only the start of a new beginning.”
