Real Patient Stories

I was first diagnosed with a brain tumour, called an Astrocytoma, in 1986. I was 12 years of age.

I had a recurrence in 1988. These tumours were removed by operations and had a shunt inserted, which went from my head to my stomach. The shunt enabled my cerebral fluid to flow from my head. I have had further operations for revision of my shunt in 1991. A bone was taken out of the back of my neck or the base of my head, to help with a cyst in my head. I had an operation in Switzerland while on holiday, as my shunt had blocked and the neurosurgeon over there inserted a second shunt.

In 1998 there was another recurrence of the brain tumour. I have had an abundance of operations and even though a large part of my life has been spent in hospital, the support I received from family and friends kept me in good positive form.

I succeeded in getting my Degree in Philosophy and French in 2010. Today I have my own apartment and I work in University College Cork (UCC) where I teach French to students with disabilities. I am a Personal and Educational Assistant to a young woman in UCC, I invigilate (supervise) exams and I also volunteer as a peer mentor (helping students) in UCC.

Every illness has side effects. I have poor balance and double vision with a nystagmus. However having a very positive attitude helps to overcome obstacles.

I feel I am very fortunate to have succeeded as well as I have. The Brain Tumour Support Group in Cork as helped me in many ways.

Julie Power


Towards the end of secondary school I started experiencing severe headaches. I put it down to the stress of the Leaving Cert. My GP diagnosed migraine and/or possible sinus problems and prescribed me strong medication. I also complained of unsteady balance but my doctor reassured me I was fine. So despite the headaches I finished school and reassured myself the unsteady balance was due to the way I walked.

In 2008, I was having an eye exam and the optician noticed something wasn’t right. She could see something at the back of my eye. She gave me a letter and sent me to hospital, where they examined me and sent me home saying I was fine. I carried on dealing with my symptoms.

In 2009, I went back to my optician. What she had seen previously was still there, only now it was bigger. She gave me a letter marked urgent for the hospital. Again they told me I was fine and my own GP still believed it was migraine or sinus. I was fed up and enrolled on a vocational training course with VTOS. It took my mind off things but it was hard as I was suffering with headaches.

In 2010, I was sick of being told the same thing so I went to the hospital myself, where I had to insist on seeing someone as my usual eye doctor was not there. A doctor gave me a thorough examination and finally those all familiar words, “something does not look right”. I was immediately sent for an MRI which took just over an hour, and by this time I knew that things did not look good. Afterwards the nurse asked me if I could come back tomorrow for my results and I said no because I didn’t feel like travelling again. She said the doctor would ring me with my results. I was pleased with that and left. When the doctor rang the next day I was at home with my nanny who I lived with. I was happy at the thought of finally having a proper diagnosis. That happiness was short lived when she dropped the bombshell that I had a brain tumour. I remember to this day the shock of hearing it over the phone. She reassured me that I was going to be ok, but said I needed to go back to the hospital and collect my MRI disc to take to Dublin as I was being referred there. The rest of that day and weekend passed in a blur as I struggled to cope with my diagnosis.

It was August 2010 when I travelled to Dublin to meet the surgeon. He explained that I had a 6cm Acoustic Neuroma (benign brain tumour), which had grown on the right and side of my brain. My only option was surgery due to the size of the tumour. If I had been believed in 2008, it could have been treated with radiation as it would have been smaller then. More tests followed. The nerves for hearing and balance were affected which explained my balance problems and also meant I was completely deaf in my right ear. My surgery was scheduled for September 2010 but was cancelled. It was rescheduled for December 2010 but again was cancelled.

I finally received a date for January 2011 and this time I knew it was going ahead as I had to be in hospital the night before.  My surgery and the possible side effects were explained to me.  I was a nervous wreck and didn’t sleep. At 7.30am I was called for theatre and the nerves really kicked in. I was told my operation would take four hours. I remember seeing the clock at 8.50am but I didn’t wake up until 6.30pm. The operation had taken nine hours due to complications. The nurse asked if I was in pain and the only thing I was worried about was that they had shaved my hair. The next day I was brave enough to look in the mirror and realised I had facial paralysis. The surgeon had no option but to cut my facial nerve.

After five days I was allowed home. I knew this was going to be hard; I could only eat small amounts and my balance had become worse. I was determined to improve it and with the help of physio was regaining my balance.

In March, I had been home roughly two months when my boyfriend spotted a pea sized lump growing on my scar. I went straight to my GP and he said to keep an eye on it. It gradually got bigger and bigger. I went to the hospital and my surgeon explained that I had fluid leaking from my brain and so he operated to release the fluid.

The Public Health Nurse visited every second day to change my dressings. She noticed that the lump was re-appearing. I went to the hospital and was told I would have to wait at least two weeks for a spot in theatre. The lump continued to grow and finally, at the end of March, I was called in for yet more surgery. This time the surgeon inserted a shunt in my back and attached a draining machine. I was on my back for five days until the fluid was drained. I was discharged after two weeks once they were satisfied the lump was not re-appearing.

After three operations in such a short time, I was glad to be home. I was very conscious of my scar and I constantly checked it and asked others to check it to make sure no lumps were re-appearing. I was doing fine after all my surgeries; everything had happened so quickly I didn’t realise what I had been through. I was scheduled to have my MRI in June 2011 and I waited anxiously for my results hoping that my surgeries had paid off. I will never forget the day of my results in August 2011. To my horror, my tumour had started to regrow. The surgeon, who had to leave 2% of my tumour behind during surgery, was as shocked as I was as he didn’t expect it to regrow so quickly.

The surgeon explained to me that I only really had two options. Operating so soon again could leave me permanently paralysed down my right side. Or I could travel to Sheffield in England for Gamma Knife Radiation at a cost of £17,000. I was left with a decision. Obviously, at 23 years of age I didn’t not want to be paralysed. If I opted for the radiation, where was I going to get the money? Also the waiting list for Sheffield was two years. I was anxious to go for the radiation and with the help of my boyfriend, friends and family, it was decided we would have to fundraise for the £17,000. We organised lots of different events. At times I felt like stopping but the support of others kept me going. It took only four months to reach the target and thanks to the generosity of people I had enough. It was also through this fundraising that I heard about the Cork Brain Tumour Support Group. One of their members saw my fundraising efforts and mentioned it to the group who decided to help me out.

Within two weeks, the surgeon contacted to me to say I had to go to London straightaway as they could take me immediately, and he was certain this treatment would be better. It was called Cyber Knife Stereotactic Radiosurgery and was delivered by a robotic arm.

On the 15th of December 2011 I went off to London with my boyfriend. Neither of us had ever been outside Ireland so we didn’t have a clue where we were going. Before I was allowed to have any tests I had to hand over the equivalent of €2,000. That day I got my radiation mask, made from a mould specifically for my face. When I had my tests done they told me that my treatment would take place on the 5th of January 2012, the night before my 24th birthday.

We were nervous travelling this time, given that we were carrying the balance of payment for the treatment, in the form of a bank draft. At the clinic I was again asked for the money before my treatment started. When I reached the machine, I had to lie down, totally flat, and my mask was fixed firmly to my face. The radiation beams were then delivered by a robotic arm which positioned itself at different angles. This lasted for over an hour, but for me it felt longer. Once it was finished my mask was taken off and I sat outside for a few minutes before leaving.

I will never forget the journey back to Heathrow; 20 stops on the tube. By then I was starting to feel sick, and tired. I still had the journey to face; a flight from Heathrow to Dublin, and I didn’t think I was able for it. I told the air hostess what I had been through and she was surprised I was not kept overnight. She kept a close eye on me. I was relieved to arrive in Dublin where we were staying the night. The next day, on my birthday, we made the journey home by train. I was in no mood for celebration and was just glad to be home.

I suffered severe tiredness for about three weeks. In February I felt well enough to go back to my course. I had a lot of catching up to do but I was determined. I succeeded and my efforts was recognised with a Personal Achievement Award in May 2012. My fellow students also recognised how hard I had worked as I was awarded the Student of the Year award in July 2012. I had always wanted to work in the caring profession and I did not want to give up my studies. My next MRI was clear and I was so relieved my treatment had worked.

In September 2012, I enrolled on the course I had always wanted to do; healthcare support, which would qualify me to work as a Healthcare Assistant. It was tough getting through my assignments and it was my goal to carry out my work experience without any barriers getting in the way i.e. tiredness and headaches. I also had to be careful of my unsteady balance especially when dealing with elderly people. I got through it and in May 2013 I passed all of my exams and qualified.

It is hard to deal with any illness that has such an effect on your quality of life. My whole life changed. The main thing is to stay positive and be thankful for where you are now. I have come a long way and am grateful that I am here to tell my story. I am conscious that many people cannot do that.

I had an MRI in January 2014 and am still awaiting the results, which is a good sign. I still get headaches but I can’t panic each time and think it’s the tumour. Positive thinking all the way.

The main support I have received is from the Cork Brain Tumour Support Group. Joining the group last summer was the best thing I have ever done. It is good to talk to people who have been through similar situations. You don’t feel alone knowing that there are other people who have been through it as well. It is good to talk and share experiences.

I hope my story inspires anyone who reads it. Just because you have a brain tumour or any illness, doesn’t mean you can’t achieve things. It might be a slow process, but with perseverance you will get there.

Suzanne Ryan