Meet Amun, diagnosed with Stage Four Hodgkin's Lymphoma, aged 15

Meet Amun, diagnosed with Stage Four Hodgkin's Lymphoma, aged 15

I was diagnosed with Stage Four Hodgkin’s Lymphoma aged 15. This news arrived as I was preparing for my year 10 end of year exams and dealing with other medical complications. I had been suffering from a variety of abnormal medical conditions for my age. I also started loosing hair about five months before my diagnosis through an autoimmune disorder. This was a very steep mental challenge for me as I think within my age group in particular your hair is part of your identity. 

I had been suffering from chest pain, loss of breath, severe fatigue and fainting periods for a few years, and the alopecia encouraged the doctors to get some tests done for me. When I found out I would be having chemo I felt different emotions. I knew the paranoia over the patches of hair wouldn’t be an issue anymore as  I would be loosing it all! This followed worry and confusion because as a teenager I wasn’t really aware of what chemo was or the effects. I was tolf that I would receive 6 cycles of chemotherapy lasting about a month each.

The chemo was combined with steroids which helped to reduce inflammation in the body. People may find it hard to believe when I say the side effects from the treatment were monumentally worse than the actual effects of the cancer itself. My body couldn’t retain any food. Chemotherapy makes you feel very nauseous and it wipes your appetite. The doctors had forgotten to give me any anti sickness medication so I had no barrier against this nausea. It was honestly debilitating. I couldn’t move or I would be sick. I couldn’t eat. On top of this, one of the chemo’s had given me peripheral neuropathy which is where the tips of your fingers and toes go tingly as the nerves are damaged. The steroids caused severe acne, weight gain, weight loss and water retention. 
In those first 2 months it was as though I wasn’t living, I was just surviving. Two months after my first chemotherapy session I went in for my second PET scan where my consultant team wanted to see if my treatment had been having a positive effect in destroying my tumour. Luckily the scan showed positive results, the tumour was 80% cleared due to the high strength of my first two chemotherapy cycles. This was the day where I started to feel a bit more me. I had the new found motivation to actually grasp control of my life. I felt my life had been snatched away from me as soon as I was diagnosed, as if I had been thrown into a whirlpool of hospitals, machines, and doctors. I didn’t want that so I decided to do something about it. I had now been on a weaker chemo regimen as the first two cycles had worked so well, they had the same combination of medication, however I much smaller doses. This really changed my experience and I started to feel so much better.

My aim was to make the most of any time that I had out of the hospital. I would go to my grandparents, go for a walk, see friends, spend time at home, cook, exercise, or anything else. One thing that really helped me was the cinema, as I wasn’t really going to school during the daytime , me and mum used to go to the cinema , as it wasn’t busy meaning a low risk of infection. This really helped my mind as it gave me a sense of normality. It also forced me to get out of my dark bedroom and into the actual world. Returning to school was hard. I was so exhausted when I came home, however it gave my life a sense of purpose, a sense that one can easily loose during treatment. It gave me a distraction, an outlet for my thoughts, a place to focus and learn, and also a place to be myself again where I didn’t feel like I was trapped. 

One of the charities which made a difference to my life was Teens Unite. They hold activities for young people facing cancer, and its lasting effects. They provided me with a place that I could discuss treatment with others who are similar in age, and in a similar situation, without feeling judged or misunderstood. At these events I can discuss cancer with others who actually get it rather than my friends and family who all tried to help but never really got how I was feeling. Charities like Teens Unite helped to change my mindset, allowing me to be more open about how I felt and more confident when going out in public as I lost the feeling of self judgement. I really didn’t care what people thought of me anymore. 

On the 6th of October 2022 I was told I was cancer free. Now almost a year in remission I have been able to reflect on my experience as acceptance of what I had been through – closure. I think my experience has changed me completely. It has changed my attitude towards life from very much focused on following the normal structure of life to trying to just enjoy every moment of my life. Try new things, form new relationships and more importantly respect yourself and your wellbeing. I have come to realise that you only really get one shot at life and it sounds so cliché but it’s true, you only get one go and you should do everything you can to make yourself happy. 

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