KATIE 
PNET (Pineoblastoma) 

15 Years Later – The Journey - I was diagnosed with a PNET brain tumour in October 2001 when I was 10 years old. I think what was really frustrating for me at the time was that I was unaware of the symptoms I started showing – the main one being that I was slowly becoming paralysed down the left side of body – So when my parents started asking me “Katie, why are you swinging your leg when you walk?” or “Why aren’t you using your left arm properly to do things and to guide your horse properly?” – I couldn't give an explanation, and there was nothing I could do about it.

It wasn’t long before my parents – THANK YOU MUM AND DAD [Symbol] – began to realise that something wasn’t quite right. They took me to my local GP who unfortunately misdiagnosed me, saying: “it was probably just a trapped nerve and it would sort itself out”. Oops! That definitely wasn’t right! So the symptoms continued and my parents were understandably beginning to worry more and more and pretty quickly decided to take me to a GP in London. The GP checked me over and then sent me on to a specialist and that’s when the ‘life changing’ ball started rolling.
I had my biopsy at Great Ormond Street Hospital by an amazing surgeon who I owe my life to – he has quite possibly the most hand-crushing handshake I’ve ever experienced!! Thank goodness as you definitely need a super steady and strong hand to do what he does.

Because of the positioning of the tumour, it was impossible to do surgery to remove the tumour so I was totally reliant on the treatment – I was put on to the PACKER Regimen which consisted of 6 weeks of radiotherapy at The Middlesex Hospital (now part of UCLH) and a years worth of chemotherapy (Vincristine, Lomustine and Cisplatine) at Great Ormond Street Hospital. Brutal!

I will never forget sitting in my ward room the day after the biopsy, all ready and waiting to go home, when my parents got called away by the doctors. Suddenly my room filled with nurses who joined me to watch an episode of Friends – I think they knew what was coming. I’ll never forget the look on my parent’s faces when they returned. I often think it must have been harder for my parents and brother to witness what I was going through than for me going through it as a patient – to be in such a helpless position. I was young and understood the word cancer but didn’t really think about what would come with it – and despite it being incredibly upsetting, painful and traumatic, it kind of all became part of life. I was also just a child and wanted to be ‘normal’ - when I was well enough, I certainly enjoyed being a child on those wards!

My Mum was also very keen for me to stay healthy and stay on top of my general well-being during treatment – a very holistic and positive regard was taken by us all. Times were hard when I stopped eating and reduced to a skeleton - but we were lucky to have support all around us from family and friends - from people praying for me to people getting us in touch with alternative ways of getting me positively through on the other side of treatment- I took herbal teas, homeopathic remedies, I had Reiki therapy, Feng Shui and all sorts! All of this helped in my recovery I’m sure, and it certainly didn’t do me any harm. There was no conflict with my treatment, so why not give it a go?

EDUCATION

Fortunately, I had the most amazing support throughout my treatment and after from family and friends. My school was also supportive and I was able to go back into the same year at school when I finished treatment and was well enough to return. I finished school and sixth form with A-Levels B,B,C and have gone on to university since to study French at Queen Mary University of London where I received a 2:1. I am now doing a Masters in Business Management at The Royal Agricultural University and am looking to write my dissertation on something related to Childhood Cancer.

INTEGRATION

I was lucky enough to come out on the other side of treatment relatively unscathed. Reintegrating back into school wasn’t so easy for me despite the teachers support and proved to be a bit of a struggle. It is difficult to fit back in when:
a) you’ve been away for so long and,
b) you feel like you can’t identify with others anymore, or they can’t identify with you.
University was also quite hard but the most important thing that I began to realise is that everyone is different and that I have in fact gained an amazing group of loyal friends who will always be there for me – admittedly it did take quite a long time to get my head around that.
When I had just finished treatment I was lucky enough to be introduced to the Ellen MacArthur Cancer Trust http://www.ellenmacarthurcancertrust.org/ with whom I went sailing around the Isle of Wight and was able to meet other people my age who had also been through cancer. Just being able to talk about our experiences knowing that we understood each other and also to be able to be kids and have fun, laugh, and mess around was a real game changer for my confidence after treatment I think. It made me feel ‘normal’ again, I wasn’t alone. To this day, I go back every summer to volunteer with the Trust and witness how being able to talk to others who have been through the same thing is such a great healer, as is the sea air.
I have also volunteered at Great Ormond Street Hospital for a charity called Radio Lollipop, which provides play and entertainment for children in hospital. As a volunteer, we go up on the wards and encourage the children to listen to our radio station and to make song requests and participate in competitions. We also play games, do arts and crafts with the children and help entertain and distract them in any way possible – which could involve blowing bubbles, dancing, singing...anything necessary or requested!! It has always been really important for me to be able to give back and help other children and families who are going through similar experiences to what I had.

CURRENT CONCERNS

However, 15 years later and it hasn’t really been until fairly recently that I have been able to catch up with myself. I battled through various things in life that seemed insignificant in comparison to cancer and treatment, and yet it has been these challenges and somehow not the cancer that has got me down and I needed to work out why that was. After I was treated, I was given the opportunity to speak to a psychotherapist, however I really had no interest – I was too young for that kind of help I think. Recently though, I have really benefited from talking to a neutral party who has been able to guide me and help me find ways of dealing with life and the chaos that had been building up in my head. I think it is really important to find a therapist or a life coach – and the right therapist or life coach for you who you can talk to easily, but it absolutely has to be the right time for you to do this. It is too easy to forget that cancer has a pretty big psychological knock on effect.

Also, every now and again, I think about what it would be like if ‘it’ came back – I work really hard to fight these thoughts away (easier said than done at times). I also often wonder why I survived and others haven’t – this is a hard one to battle. Communication is key here - keep talking! However, I also found a great app called HeadSpace https://www.headspace.com which has been amazingly helpful in relaxing and bringing me back down to reality.

The other thing playing on my mind is the pressure of time constraints to have children - 30 being the medically suggested ‘deadline’ – which is somewhat concerning! How I deal with this though is balance – keeping everything balanced and in perspective and I am sure things will sort themselves out.

I often wonder what life would have been like if I hadn’t had cancer. I really don’t think I would be the person I am today if I hadn’t been through the disease. It sounds kind of crazy but I am almost ‘grateful’ – saying that, I would never, ever wish anyone to go through it – but the experience makes you really appreciate life - to work hard, to be stronger, to strive to do better, to help others, and is just a massive reality check.

To write about life experiences is incredibly therapeutic. It is not always so easy to talk out loud about difficult, traumatic, personal experiences and feelings but writing is reflexive and can have a powerful healing effect. I encourage everyone to share their story…we all have one!