Thursday 16 January 2014

I was diagnosed with Acute Lymphoblastic Leukaemia in January 2001. Owing to my age and the progression of the cancer at the time of diagnosis, I was put on what was called Regime B treatment, the 2nd most intense of treatment regimes. The cancer was treated with chemotherapy and thankfully I never needed a bone marrow transplant or radiotherapy. Most of the chemotherapy was administered in Our Lady's Hospital for Sick Children Crumlin with some thankfully being able to be administered more locally in Limerick. The nurses and doctors in Crumlin were amazing and to them I owe my life. The level of care I received was just unbelievable at times, with my consultant, the only paediatric oncologist and haematologist in the country at the time giving me his own personal  mobile phone number, which he assured me I could ring at any time, should I have any concerns or worries. The nurses in the oncology unit and the chemo room worked so hard and were so caring at the same time. There was 8 months intensive chemotherapy initially scheduled with a maintenance period of a year and 4 months to follow in order to keep the cancer at bay. The chemo hit me hard and a lot of the time when I was scheduled to start a bout of chemo I was too weak or my weakened immune system had me down with an infection of some sort so that they had to delay the chemo. Anyway the intense treatment ended up taking a year rather than 8 months and the maintenance a year and a half after that. I was out of school for most of the year bar a few days here and there, but thankfully the maintenance treatment let me return to a normal life for the most part. I finished the last of my chemo in July 2003.
The facilities in Crumlin were a little lacking however and I always shared rooms with children much younger than me. I of course, as a teenager, was trying to be as independent as possible but the treatment made me more dependent on my parents than I had been in a long time. This coupled with spending days on end watching Barney in the company of 5 year olds was really not what I had envisaged for myself that year. I was of course sympathetic, they didn't understand what was going on, only that they were sick, so I had to at least give them a monopoly on the t.v. channel choice!
On one occasion I ended up spending a couple of nights on an orthopaedic ward because there was no beds available on the oncology ward. I was very sick at the time, constantly vomiting and entirely bald. I was sharing with a little girl of about 3 who had just been diagnosed with cancer. I am sure my situation at the time was scary to that family as they faced the long road of treatment ahead and they probably wondered was this to be their fate soon enough. Ideally the newly diagnosed would be given some privacy and time to deal with the unexpected frightening news amongst family.
My mother gave up work and travelled with me for all my treatments. Any night I spent in hospital she or, on occasion my father, were on a roll out bed on the floor beside me. However, given that space was at a premium in the oncology ward, my younger sister rarely made the trip. If both parents were with me she was at a friend's or relative's. If there was more space and privacy she may have been able to visit a bit more often and the family wouldn't have felt as split as it did at times that year.
The hospital is looking to raise 1 million euro to update facilities in the oncology ward. Since my time being treated there they have introduced a teenage cancer treatment room and are looking to add more private rooms so that families can deal with their situation in privacy.
Again I have highlighted the shortcomings of the hospital facilities but just want to reiterate again how amazing the staff were.
The hospital staff suggested to me at the time that I should join Canteen Ireland, a group which supports teenagers during and after their treatment. I was reluctant to go meet them initially as I wasn't feeling the most bubbly and making new friends wasn't something I felt I had the energy for! The coordinator of the organisation rang me encouraging me to come along so I went. For the weekends away you can bring a sibling or friend along with you so it was a great time for me to spend some time with my sister again. The weekends away include adventure centres, a bi-annual trip to alton towers and just general fun stuff! I made some great friends through it and it drew me out of the feelings of "why me?" that circled around in my head sometimes during tough treatment. They made me see that there were others in similar situations and those who were also worse off. We all got together, had fun and shared our experiences of cancer when we felt like it.
Crumlin treats people up to the age of 16 after which they are treated in other hospitals as adults. Being treated in a children's hospital is difficult when you are almost in a position to be treated as an adult. Children's tv, playrooms and surgery gowns covered in teletubbies were kind of wasted on me during treatment. Equally I imagine being 16 and treated with adults would be difficult. Canteen is a great as a place where teens can come together at their own level. The group has gotten bigger and bigger and more funding is needed. Members are asked to pay 5 euro towards trips, but numbers have to be limited at times. Again the more funding that is available, the more people that can come on trips and the more trips that can be organised. The group was really instrumental in helping me keep a positive attitude throughout treatment and so I feel it is hugely important that it is as accessible as possible for those going through treatment.
So now you know a little more about my experience of cancer and can hopefully see why funding is needed for both those organisations. I am so lucky to be in the position I am now. Cancer is a part of my past and there is no residual signs of it anywhere in me now. I am happy and want to just do some small thing towards making it any bit easier for someone else. With this in mind I decided to run the half marathon to try raise money for Crumlin and Canteen. Donations can be made via idonate.ie/orlashalfmarathon and are much much appreciated!