Mary Mullins, medulloblastoma
When were you diagnosed and what with?
I was diagnosed in July 2016 with a very rare cancerous brain tumour called a medulloblastoma.
How did you find out you had cancer?
Six months before I was diagnosed I started getting headaches. It felt like intense pressure at the back of my head. My GP thought they were tension headaches caused by stress. The headaches were getting worse, and one day they got so bad I knew there must be something seriously wrong. I had double vision and anything I did, laughing, coughing, anything, the pain got worse so I went to A&E.
The doctors at the hospital thought I was suffering from migraines but I couldn’t even talk because I felt so bad. All I wanted was for the pain to go away. I had a CT scan which showed there was a mass in my brain. More tests followed, including an MRI scan, which confirmed the mass was a brain tumour. A week later I had surgery to remove the tumour and then a week after that I was told it was cancerous.
What did you think and feel when you were diagnosed?
My surgeons mentioned there might have been a slight chance of the tumour being cancerous and I had a visit from an oncology doctor in the ward so I prepared myself for the worst. It was, however, still a massive blow when I found out and it took ages to sink in. I was very logical about it all though and wanted to know what was going to happen next. It was positive to hear that the oncology team felt confident they could treat my cancer.
How did the people around you react?
My family were in shock and really upset, my boyfriend tried to make me see that it could have been a worse diagnosis and that this was going to be tough but that I was strong. Friends were shocked and wanted to know how they could support me. I had lots of positive words from family and friends. My family called me a “tough cookie”.
What treatment did you have?
I had six weeks of brain and spine radiotherapy (every day Mon-Fri). I had a six week break after radiotherapy and I then completed six months of chemotherapy.
How did you feel through treatment?
Radiotherapy was awful. It made me feel really claustrophobic as I had to lie on my tummy with my face in a mask. I felt sick all the time, I couldn’t eat as I had a lump in my throat and I suffered from constipation and diarrhoea.
What happened after treatment finished?
It felt strange when the treatment finished and it took time to adjust to a “new normal”. For an entire 12 months my life was full of hospital appointments and treatment so I felt lost. I felt exhausted from the treatment and the fatigue was so overwhelming. I tried to do things to help with my recovery. I joined an exercise programme and this has really helped with my getting my confidence and strength back.
How did you get involved with Shine?
I joined Shine quite early on in my diagnosis and I always intended on going to a meet up but I never did. Eventually I attended the Shine Connect conference in May 2017 with my sister and I am so glad I did! I met some lovely like-minded people and had a great day. I then went to my first meet up in a pub and we did a quiz - it was really relaxed and everyone was lovely. I am looking forward to attending more meet ups.
What difference has Shine made to you?
It is great to know there is a charity out there full of young people that know exactly what you’re going through, that don’t judge you, and are really friendly. There have been times when I have felt lonely and placed a post in the Shine Facebook group and I would get replies from people who feel the same and give advice and are there for you.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
Having cancer has changed my outlook on life. I used to work really long hours but now I want to have a better work/life balance. I never used to be particularly emotional but now I cry at the drop of a hat. Being told I needed brain surgery and that there was a risk I might never wake up has made me appreciate life so much more.
If you could give one piece of advice to yourself before your diagnosis what would it be?
I would not work such long hours! I would have more fun and live in the moment.