'Sunshine all the time makes a desert'

Sometimes I think about how much Cancer has taught me. I think about how it sort of put me in line and calmed me down. It made me realise what's important in life and what struggling is really like. I suppose it gave me patience, compassion perhaps. But I would like to know what I'd be like now if it had never happened. I would love to see the girl I would be. Would I be happier? Prettier? More intelligent? That's what I assume when I picture it. I wonder what scars are left on my soul from everything I've faced. Who would I be without them? Would I be like everyone else? That's not even a real thing? Everyone is different? Maybe I'd be more who I want to be. Maybe without any physical restriction I would achieve more? Or maybe restriction is the only thing that's made my achievements seem like achievements?

Would I be a better person? Probably. I wouldn't be so bitter or angry or sad. Or maybe I would? Do I want this to be my identity? I can't pretend it didn't happen anymore. I can't convince myself that I'll wake up and it'll all go away. This is my life. Maybe I'm not any closer to accepting it. I'm still wishing it had never happened 10 years on? Will I still be wishing in 20 years? 

I don't even know why I think about that so much. It's impossible to ever know. Maybe I've walked past my double and she looks nothing like me because she didn't have Cancer. I feel like I can't live my life without wondering what could've been and I waste so much energy thinking about it but I can't seem to stop myself. I wish I thought in a different way. I wish my brain would stop connecting happiness to a cancer less life. I wish I could stop thinking about this stuff all the time and that for once I could just focus on real things like applying for university and art and what I want to do with my future. But my mind is in the past. And I'm wishing again. 

I'm sorry if this post makes no sense~
 

Sophie xo 

Letting Go

This is something that I just cannot do. It would be so much healthier for my emotional state if I could simply move on and let things go but there's always an incredibly strong voice in my head telling me how much better things were before and that it can happen again, even though there's a 0% chance. It seems so idiotic to keep wishing and wishing for something that's impossible, but how I feel right now seems impossible. We are creatures of habit, and when all structure changes we don't know how to react. This is where escapism comes in. I use this as a coping strategy, but it doesn't actually help me cope, it just delays the healing process. If I just ignore how I feel it seems to go away, but it only gets buried. And then PTSD comes in and I burst into tears at a certain smell or song, and it's extremely detrimental to my mental health. It's like carrying an emotional bomb that could explode at any point, and this becomes quite exhausting to maintain. I wish I could stand up and tell everyone how happy and ok I am after surviving, but it's not like that. I don't live every day like it's my last, I don't look in the mirror and think wow I'm so glad I have hair now, I don't constantly think of how lucky I am. But I wish I did. I wish I could. I'm completely aware that some people reading this will judge me as an unappreciative self-centered little girl who has no idea how much you would give to have a life after cancer, but I refuse to pretend anymore. Life after cancer is far from perfect, and someone needs to make this known, otherwise nothing will change.
This is why I'm going to channel more energy into my campaign for better psychological aftercare for cancer patients, so that we no longer have to sit in our bedrooms and store sadness inside because we're 'ungrateful'. Try living through unimaginable pain, toxic medication, physical debilitation and social exclusion, then you can tell me how lucky I am.

Sophie xo 

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10 things you need to survive a bout of chemo

1 ~ Extra strong mints / boiled sweets, for when that awful chemo taste surprises you again. 

2 ~ Something that smells like home, maybe a blanket or a pillow. Something that smells like your house after coming home from holiday. 

3 ~ Your most comfortable clothes, or primark pyjamas if you can buy new ones. Trust me, you won't want to wear these clothes after chemo, so don't wear anything you're too attached to. 

4 ~ Your laptop / tablet / iPad, and ask a friend to add you as a user on their Netflix account. This will save you from the endless daytime TV on the 4 channels that actually work. 

5 ~ Your favourite CD, sometimes you will literally be too tired to keep your eyes open, and this will boost your mood with minimal effort. Maybe bring two, a relaxing one and an upbeat one, Beyoncés always good 👸

6 ~ Your favourite film, one that you can watch, fall asleep and chill out to. Audiobooks would also be good to listen to, again when you're too tired to move. 

7 ~ A selection of your favourite foods, one from each food group, eg your fave biscuits, fruit, crisps, soup. Because canteens are overly expensive. Keep these out of sight until you crave something though, sometimes the sight of food is enough to make you ill. 

8 ~ A diary, to record your thoughts and feelings. This will help your healing process. Alternatively, keep a blog, although the screen may give you headaches. 

9 ~ Determination. 

10 ~ Hope. 

Comment and share what helped you survive chemo :) 

Sophie xo

Frustration

A blind guy went to our school, and we were told not to walk into him/help him out if he was lost. He was blind since birth, and this made me think about his perspective. I thought of how it must be awful to not be able to see, but he knew no different. Cancer is not like this. It's more like going blind during your life, waking up one day not being able to see. I have such bittersweet memories of my life before diagnosis, which Lloyd's story on Stand Up To Cancer reminded me of yesterday. He spoke about his dream of being a football player, which cancer took away from him. It was heart-breaking. And then I remembered that I was that kid. I had dreams that I now couldn't reach. I loved dancing, and I'd love to dance again. 

Bone Cancer is one of the most physically debilitating cancers, especially when it's in your leg. I mean, it was difficult enough to walk, let alone jog, run or dance. Now that I'm 18 I go on nights out and find that I'm trying to hide how much my legs are aching by drinking more and more, which obviously isn't healthy. I don't want to class myself as less than anyone else, which has helped me achieve my physical goals, but has made me suffer mentally. I know that I shouldn't compare myself to people who haven't had to go through any cancer/disability, but how can I not? everyday when I went to school I would be the least able person, and I hated that. I didn't want to be different, I wanted to blend in and not 'the girl who had cancer'. 

It frustrates me, remembering how I was before. I seem to have only happy memories of before diagnosis, although I'm viewing it through rose-tinted glasses. I felt like a child before, and all of a sudden I had to be adult. The physical frustration is the worst, which I cope with through exercise. But the mental frustration of constant 'why me' questioning, thinking of how your life would be without it and comparing yourself to all the other 'normal' people your age becomes exhausting. I spent so long wishing and wishing it wasn't me and that I would wake up someone else that I forgot who I was. I was the girl that kicked cancers butt, and I'm proud. 

Sophie xo

Apology

Hi everyone, sorry for not posting in so long. These blog posts take a lot of emotional energy which I just haven't had recently. I've also noticed that my blog is so negative, basically because I've used it as a space to bitch about having cancer, so I'm going to post more positive pieces now. Of course I'll still talk about the emotional issues connected to surviving cancer, but mixed with more practical advice and good news.

This good news starts with the Bone Cancer Research Trust calendar shoot I was part of on Sunday. 

It was simply amazing. It was exactly what I needed, what I think I've always needed. I met people like me, I met people who understood, and it was better than I had ever dreamed. We discussed how things made us feel and other people's reactions to us, and I felt like I was part of a group and not alone. As my previous posts have explained, one of the hardest things is the loneliness such a rare disease causes, and suddenly on Sunday I was standing in a room with seven people like me. I feel like Sunday healed me just as much as the year and a half of therapy, without a doubt. I'm still in awe of the whole day, and all the people I met. They all had such inspiring stories and were truly lovely people. Hearing them speak about their treatment was so strange because we all had quite similar stories, and I'd never heard someone tell me their's. It's really put things in perspective for me, and I feel like I really need to make something of myself out of respect for those whom bone cancer has taken.

Sophie xo

Understanding

Throughout my post-diagnosis life I’ve strived to find someone like me. I keep mentioning it in what seems to be every blog post, because I think it’s what makes it so hard. No two cancer experiences are the same. And I need to deal with the fact that I will never meet someone the same as me. Going to the Bone Cancer Research Trust 2014 Conference helped me a tremendous amount, especially when I was part of an open discussion with other survivors, sufferers and parents of people who’d had bone cancer. I felt part of a special group of people. And then I had to leave, and reality hit me. I don’t live with those people, or even near those people. I was alone again.

For some psychological reason unknown to me, I can’t accept that I am alone in this. No one will understand exactly how I feel because no one else will have had Ewing’s as an eight year old girl, had the same knee surgeries, had the same environment or family... etc.

I wish there was an international network or some sort of social media site in place for cancer survivors where you could be divided and subdivided into different groups, e.g. sufferer / survivor, breast cancer / bone cancer etc, because maybe on a worldwide scale there will be someone nearly the same. That’s kind of the reason why I’ve carried on with this blog. I feel like I’m finally beginning to reach out to people that understand. The few comments that I’ve received have truly touched my heart. I re-read them when I haven’t posted in a while, just to make this blog seem worthwhile.  Thank you to those who’ve commented on my posts. <3

Sophie xo