Childhood cancer awareness month
A personal story by Beau Johnston.
The main way my tumour impacts me is mentally – and this isn’t always glaringly obvious but cancer is unpredictable and uncontrollable. This often means that my stress manifests itself in a way of me having control over something. For example I have specific obsessive compulsions, I work hard in school to try gain control in that way, and I am a perfectionist. Having cancer makes your world and your perspective of life so rare and unique. This sometimes means I can struggle to relate to my friends because they will never ever truly be able to understand what living with in cancer is like.
Often cancer makes me feel isolated and out of place no matter how many supportive friends and family members I have. This is made particularly bad because of the fact I’m a teenager with cancer. Teenagers generally speaking are very selfish beings (myself included). This means people don’t tend to think before they say things and don’t often show that they care about me or are there for me- only because they have so much stress and anxiety to deal with themselves.
It sounds bizarre but I find that I personally feel guilty for having cancer. I feel guilty that I have made my parents life more difficult and stressful. I feel guilty for encumbering my friends and family with my own stress. I feel guilty for taking attention from my siblings. I constantly feel guilty.
But when you already feel isolated from your peers a quick “I’m here for you” or maybe “I’m so proud of you, you are doing great” can really go a long way. Even just showing that you care with a small gesture can make the world of difference. For example, facetiming a friend whilst they have chemo, or if the individual can’t meet up because they feel too unwell, or their white blood cell levels are too low. Be accommodating and flexible with your plans. The most important point, and I can’t stress this enough is that it means the absolute world to me when people keep in touch if I’m off school due to chemo.
There are also many things you should avoid saying or doing. Too many people are awkward when I speak to them about my cancer and my situation – this is the least comforting thing you can possibly do and if it is due to lack of understanding. Ask questions because there is never a question that is “too far”.
Another thing I often hear which makes my blood boil is “At least you don’t have a bad type of cancer”- if you ever feel the urge to say that, please pause for a second and name me one type of cancer that isn’t bad … I’ll wait patiently. I am fortunate enough to say that at the time of writing this article my cancer is stable and doesn’t affect my life massively anymore. However, this doesn’t mean that I don’t think and worry about it frequently. If I am being completely honest I don’t think about it daily. I only ever really think think about it a lot when scan time approaches. Occasionally a thought such as “I wonder if cancer will be the thing that kills me” enters my head and I try to stop thinking about it, but the more you try to block out a thought the more it consumes you until it becomes deafening. So that’s the answer to the most commonly asked question I get about my cancer – Yes, I do think about death relating to my cancer.
The worst thing with my situation is that my tumour is on my optic nerve and because of this I have lost three quarters of my vision. This means it takes greater amounts of effort and time to do basic things such as reading. It also means I have had to do mobility training to ensure I can get around independently- I have literally had to be taught how to cross roads properly. Because of my vision loss I used to, and still occasionally do, find crowded areas extremely difficult. In fact, my vision used to be so bad that I had to wear a helmet at break and lunchtime to prevent myself from whacking my head off anything. My loss of vision has also meant that I get extra time during exams as it takes me longer to process information visually.
When I was younger, I used to hate feeling like I was being babied because of my cancer – probably because when everyone is young, they feel a desire to be older. However, now that I reflect on it, I appreciate it and feel it was beneficial. I still don’t enjoy when people pity me, but I am appreciative of people when they offer to help me as I sometimes struggle to ask for help myself. Another reason I hated receiving extra help for my cancer when I was younger was because it made me feel as though I was suffering from my illness more than I was- almost like my cancer was beating me and this made me feel weak. I also did not like it as it made me feel different and made me feel as though I stood out like a sore thumb compared to my peers.
The final negative part of growing up and living with cancer for me is the guilt you experience. It sounds bizarre but I find that I personally feel guilty for having cancer. I feel guilty that I have made my parents life more difficult and stressful. I feel guilty for encumbering my friends and family with my own stress. I feel guilty for taking attention from my siblings. I constantly feel guilty.
My vision used to be so bad that I had to wear a helmet at break and lunchtime to prevent myself from whacking my head off anything.
Although the overarching point made in this article is that having cancer is horrendous, there are also surprisingly many positive aspects that come with it. I feel my cancer has played a major role in moulding my personality. It has certainly made me more compassionate and empathetic towards other people as it has made me more aware that every single person is dealing with an internal battle that you could never understand. It has improved my perseverance as receiving bad news is a pretty common occurrence with cancer, but it forces you to train your brain to be able to keep going in spite of challenge because otherwise you spend your whole life miserable.
It has definitely improved my outlook on life. It has taught me that life is a beautiful gift, and you never know how much of it you have left so make the most of every second. Cancer also puts everyday problems into perspective, a bad grade is not the worst thing that could ever happen and falling out with friends is not as big of a deal as you may think. It makes you appreciate the little things and makes you grateful for the smallest things like the sun or laughing with a friend. I also feel that growing up with cancer projects you into adulthood at hypersonic speed because it forces you to contemplate the idea of death before you have ever truly lived. As upsetting as this sounds it has made me very emotionally mature compared to my peers. The final way in which cancer has improved my life is that it has forced me to be incredibly hard working and determined.
Overall, believe it or not I am appreciative of having cancer as I truly believe I wouldn’t be the same person I am today without it.
written by Beau Johnston
Illustrations by Sophie Jackson – https://www.lasophiejackson.com
Part 1 of article | September is Childhood Cancer Awareness Month.
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