Patrick's blog #1

Survivor

My Story

My name is Patrick and I am writing to share my story with those in a similar position to inspire hope in them and help them persevere through treatment because anything is possible. When I was going through the treatment, my parents wished for some inspiration of survivor stories like mine and so many others, evident in this charity. I have overcome unimaginable odds to defeat this illness and, in the process, received significant support to help me carry on and live a normal life. I had to deal with hair loss, bullying, neurological trauma and much more, so take it from me life can always be improved. In school, I received support including extra time due to a lowered processing speed time, from the tumour. This gave me 25% longer in exams and made the difference when I received 10 A-C GCSEs and was able to move on to A levels.

I myself was born in Worcester, Massachusetts, and am 17. I was a fairly normal child, with healthy relationships with friends and family. Until, the age of 4, I was on track to what I thought would be a fun American Childhood, full of Baseball and large quantities of food, accompanied by video games. This all changed when one morning I remember waking up watching TV and drinking chocolate milk, my favourite of all. My eyesight was blurry, I thought I was getting a fever as I became hot and overheated, as well as developing a headache. Nevertheless, I was taken to pre-school and I felt ill all day. I then went to lie down after being sick. I was picked up and taken to UMASS hospital by my mum and I was scared but I had no idea what was waiting for me when the results of a test came back, and I was rushed to Boston's Children's Hospital in an ambulance.

I suffered a grade 3 anaplastic astrocytoma in the right parietal lobe, or in more simplistic terms a severe tumour in the right of my brain. I was diagnosed on July 31st, 2005 at the age of 4. My first operation was a surgical resection on August 10th, where my tumour was removed at Boston Children's Hospital. After the surgery, the tumour was discovered to be malignant, or cancerous and that I had a 20 % survival rate. I then had my second surgery to get a port inserted, to regularly monitor bloods. I then underwent 6 weeks of radiation at Brigham and Woman's Hospital Boston. I then endured focused CNNU and temozolomide chemotherapy at Dana Farber Cancer Institute, in the Jimmy Fund Wing. I then became the poster boy for the Jimmy Fund. Between the age of 5-6, I had blood tests constantly. I then had an MRI, every 3 months for the first 2 years of post-treatment then after that every 6 months, while still on medication and undergoing treatment, until 2007. Post-treatment in 2009, saw my regular MRIs reduce in regularity to one a year. 2010, saw my treatment transferred to Great Ormond Street Hospital London with an annual MRI. 2013, saw my treatment transferred to UCLH, Teenage Cancer Centre. I received an MRI from 12 to 14. I also had 1.5mg of Zomacton growth hormone from 2014 to 2018 to replenish the damaged pituitary gland because of my tumour.

My main 3 pieces of advice are to; one talk about your situation. Cancer is not going to hurt you again, so don’t be afraid to remove the stigma. Once you start getting it off your chest, you will feel the gratification because you won’t feel it as a burden but an achievement. The person you talk to may give good advice to help you cope or just provide assurance that the trauma is over and they will always be there to listen if needed. You, therefore, may find you aren’t alone and be able to interact with people who have been through the same experiences as you. And I’m saying this from experience because it was one thing I didn’t do, but I urge others to do. Secondly,  I was unlucky enough to experience bullying over my cancer, but others shouldn’t have to. Bullies are ignorant and single people out for their differences because they are too insecure to demonstrate their own or they are jealous because they don’t have any. The moment you confront them they will stop because they want you to be afraid and when they know you aren't they can’t harm you anymore. People are now aware cancer is evident in life and almost anyone you know has a friend or loved one affected by it, so its unlikely bullying will be supported by many. Finally,  my last piece of advice is to persevere and continue to live your life to the fullest. The hard part is over, now it’s time to be and become strong because we do belong. Nothing can stop you now from being our best self. Things like school or work are tough after treatment but they do support you to the best of their ability. So many people are unaware of extra support. Dr. Spoudeas really helped me personally (25% extra time in exams because of my slow processing speed) with that and can help you too.