Posted on Monday 27 September 2021

Ainsley’s story: “Nothing ever prepares you for the mental toll the treatment takes on you. My independence and dignity were stripped away from me.”

Ainsley was diagnosed with a brain tumour one week after his father’s own death from cancer. Aged 21, Ainsley struggled with the impact of the diagnosis. Here he shares his story and how his Young Lives vs Cancer social worker, Eve, helped him. Ainsley shared this speech at our Sunningdale Golf Day.

My name is Ainsley, and I am 23 years old from a small ex mining community known as Blyth. On the 26th of April 2019 my whole world as I knew it changed dramatically. I was diagnosed with brain tumour. Before my diagnosis I was like any typical 21-year-old. I enjoyed regularly playing football which I have done for several years, attending my local gym, going out with friend and studying Sports Science at Northumbria University. Before my diagnosis I aspired of entering education to become a PE teacher. At the time of my diagnosis, I was weeks away from my first independent holiday away from my parents. However, all of this came to an abrupt halt and my life as I knew it stalled immediately.

Ainsley was just 21 when he collapsed with a brain tumour. Today, he has completed his degree and is looking forward to studying for a Masters.

Diagnosis

Just one week before my own diagnosis, my father passed away with Colon cancer, he was just 49 years old. This was my first brutal introduction to cancer of any kind. Watching my own father battle and struggle with cancer was something no 21-year-old should have to go through but, what I didn’t realise at the time was that just one week later I would be facing the exact same challenges and my family would have to endure seeing a close family member struggle once more. I think of it all this was the most difficult part to comes to terms with.

I first started to notice changes in my fitness and sleeping pattern when I was 16 years old. This surprised me giving I have lived an active sporting lifestyle since I could walk. My family would always comment of the length of time I’m slept, and it was a recurring joke within the family. “How is possible for a young lad to sleep for this long each day” my mother and father would often say. Many trip to doctors followed but no solution ever came. Little did I know during this time an aggressive brain tumour was developing. After my father’s death the headaches and migraines increased exponentially and progressed to blurred vision. Very quickly, I found myself at North Tyneside hospital conducting eye tests and the doctors stated that although there is something clearly wrong it is nothing to do with your eyes from what we can tell. The following day, my mum took me to hospital again following sickness through the night before I could arrive, I collapsed and was rushed into Cramlington General hospital. Collapsing outside of the hospital was the last solid memory I have of the incident. From then, I was in and out of consciousness, each time surrounded by even more unfamiliar faces and more tubes coming out of me than I could count. Various tests occurred and the worst was soon confirmed. “Mr Foster, you have a cancerous brain tumour”. At this time, my family were juggling arranging my father’s funeral and visiting me in hospital. The most difficult part about this process was when the possibility of attending the funeral slowly faded each day. Its one thing to be told you have a cancerous brain tumour its another to be told it’s unlikely you will be able to attend his own funeral. Eventually the hospital agreed for me to attend proving I have a team of specialist care staff present to monitor myself for which I will be forever indebted to them for allowing me to attend.

Soon after, thing got a lot worse. During another MRI to establish the full scale of the issue the doctors quickly discovered that the tumour had burst.  My family were informed that I needed a lifesaving operation and that due to the tumours location it was unlikely I would survive the operation. As I was wheeled off for my operation, I am told that family members and nurses said their goodbyes with little hope that I would return. At the time I of course had no idea of any of this but, from stories told me by family they had an agonising 7-8 hour wait (which was only meant to be four hours) during the early hours for any news of success. Luckily, I had managed to survive the operation with the thanks to Doctor Major. The ward had even designated me the nickname ‘Miracle’ and from what I hear this is exactly what me telling my story today is. However, this was only the start to a long an agonising road to recovery.

Ainsley during his treatment.

Treatment

It is at this point in my story that I was introduced to Young Lives Vs Cancer through Eve my amazing social worker who I can’t thank enough for all that she has done for me and my family. As my chemotherapy treatment began, I was aware of the physical effects this would have on my body having watched my dad go through a similar treatment. But nothing ever prepares you for the mental toll the treatment takes on you. My independence was stripped away from me, relying on my mum and other NHS staff to care for every need including washing, going to the toilet, eating food. Your dignity and independence are quickly pulled away from your feet. This is something I had never considered prior, and this is where the work of Young Lives Vs Cancer really does come into it’s own. Despite having people around you who love you, the level of isolation and fear I felt really did take its toll. You are appreciative that you are still here but questions such as; Will I ever be able to see or walk again, Will I ever be able to kick a football on a pitch again, little things like will I even be able to feed myself came to mind on what seemed like a never ending loop in my head. Young Lives vs Cancer offered a hand of help when I thought nothing ever would. They are truly amazing.

Following on from chemotherapy I was whisked away to Essen, Germany for three months’ courtesy of NHS holidays. Well not quite, it was three months of intensive radiotherapy. By this point the grind, noise and wait of the MRI machines quickly became my reality. There is nothing you can do in there but reflect and stay positive. Throughout my treatment what quickly became apparent to me was the incredible attitude, dedication, and commitment of hospital staff at every level whether that be in the UK or Germany. During difficult times you are quickly reminded in Essen that you are not alone. I was unfortunate at 21 to develop such a difficult diagnosis but, when you scan the room of the Essen medical centre you quickly realise there are children with their families as young as 18 moths receiving treatment who must have it much worse than I do. They were always a source of strength during this time. I am lucky to have strong support network around me. My friends and brother even surprised me by flying out to Germany randomly to visit me, it was little moments like this that give you the strength to keep fighting. Following my completion of the Proton beam therapy and ringing the infamous bell that signalled the end to my time in Essen. By this point it was October 2019, the long-awaited MRI scan beckoned which would determine the success or failure of the treatment thus far. In December 2019 I anxiously awaited the results to the decisive MRI and thankfully I was given all clear just eight months after I first collapsed outside of Cramlington Hospital.

During this time, Eve my social worker had been busy in the background arranging not only financial and physical support but more crucially mental support to both me and my family. Eve liaised with my university, travel agents, NHS and various other people to ensure that I could only focus on myself and getting better. I will be forever indebted to Eve and the support she gave my family throughout. One person I have not spoken about yet is my mam. When your diagnosed with cancer it not only turns your own life upside down but of everybody close to you. It has a ripple effect far beyond yourself. My mam was my rock and still is, had it not been for her constant support there is no doubt in mind that I would not be speaking to you today. She quit her job to look after me full time and did not leave my side for 8 straight months. No 21-year-old wants to depend on their mother but, she was a constant source of inspiration, motivation and she gave me the self-belief to make me realise that this is a fight I can and will win. When it seemed like everyone else had given up hope, she never did. I know everyone says this about their mum, but she is the most caring, inspirational, and amazing women I have encountered. I am honoured to call her my mum.

Post treatment

Following all clear, I immediately picked up where I left off in April 2019. I returned to Northumbria University to complete my final year achieving a 2:1 having attended the graduation ceremony with my mum just last weekend. The recovery was still slow paced having to improve certain areas of life such as short-term memory, regaining fitness having been bed bound for several months and I anticipated things would return to me like they did before. But, only after all of the treatment do you truly have time to reflect on the scale and seriousness of the illness you have just battled. I think the hardest part is learning to accept that you are not the same person as you once were, you now have certain limitations but, these limitations do not define who I am they only give be greater motivation to be an even better version of myself that I was before. I plan on starting my Masters in Physiotherapy in January 2022. I idolise the NHS and the work they do, I now have dreams of entering the NHS myself to make a positive difference to people’s lives like the staff did for myself.

After my treatment I feared the support network I had around me e.g., Eve (social worker); Young Lives vs Cancer etc would dissolve away but, it didn’t. I spoke earlier of the isolation and loneliness you feel and it is arguable greater after it is all said and done but the charity and Eve were always there to support even years after. To this day Eve is supporting me in my application to university and Young Lives vs Cancer continue to offer me critical support as I continue my journey for a normal life any young adult deserves. As I share my story, I can’t stress enough the amazing work charities like Young Lives vs Cancer do for young adults like myself and I am just one example of many families they have supported. I feel very fortunate and privileged to have met such an amazing team of people who have given me opportunities such as speaking to you all today and will forever be indebted to them for the light they provided in my darkest of hours.

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