Survivor Speech at the Life Styled By Us fashion show

Last night I was given the privilege of representing the BCRT at a fashion show, hosted by Life Styled By Us at the Bel and The Dragon in Cookham. And I must say that it’s really made me very proud of myself to see how far I've come. I’ve grown from a person who couldn’t even say the word cancer without it being stifled and forced, to someone who can comfortably stand up and speak about their experience. I know that I write a lot about it on here, and I'm used to people asking about my leg/limp, but this was quite different. I was asked to present my story to a room full of guests, in order to really connect the charity they were donating to with the event itself. And I feel like this was such a wonderful idea, as we often just buy raffle tickets etc. for the sake of it, without realising the actual cause we are helping.

I was a little emotional when writing the speech, but I was fine when reading it aloud. I think it helped that I didn’t know anyone there (other than my Uncle, who accompanied me), and that it was only about 8 minutes long. It seemed quite difficult to assess which parts of my story were the most important, especially considering the fact that my perception of it is very different to everyone else’s. It was also a bit of a challenge to write an upbeat, engaging speech about the hardest time of my life, but thankfully my positive approach to everything seeped through into this task as well.

What I think struck me most about the night was meeting the chef, who suggested the charity because his brother is currently battling Ewing’s Sarcoma. He thanked me, and told me that he was humbled by my talk.

And that’s really made me realise that all of this makes a difference. I feel so inspired to become more involved with the BCRT and to personally focus on reaching out to people on here, and also face to face. I'm thinking of possibly starting a vlog where I would pretty much discuss the same as I do on here, so that I can reach out to people who possibly don’t have enough time to read long blog posts or would prefer to watch and listen rather than read. I feel that this would also be a good platform to match a name with a face, and a face with a story, so you could all get to know me a little bit more. (Any advice on this would be truly appreciated!)

Sophie Louisa xo

Newspaper Articles!

Good news for my awareness raising crusade; my story was printed in four newspapers last week.

The story was centred on the leg lengthening surgery I had, and the fact I could wear high shoes thereafter.

View the full Daily Mail article here

I'm beyond appreciative for this publicity, and I can only hope that at least one young girl with scars/disabilities saw the article and felt a little better about herself. Although the focus may seem a tad superficial, body confidence is what I'm all about. I'm beginning to love myself, and it's so freeing. Once you realise that you're the most important person in your life, you start to treat yourself with kindness. You wouldn't dare speak to anyone like you speak to yourself, would you? 

I spent so long being angry at myself, criticising myself everyday, yelling insults within my own mind. Would you spend every waking moment telling someone that they're ugly? Worthless? That no one cares about them? That their legs-after going through so much- should be covered and ashamed of? That would be disgusting, and we get enough hate without being our own worst enemy.

There have been certain influences in my life that support these harsh views of myself, but I realise now that I'm stronger than they are, and I can overcome it personally, without the need to treat them in the same manner. I made so many harsh comments in reaction to people telling me that my legs are ugly etc, especially focused on people's obvious insecurities (like their weight) and I still hold these with me, regretting every one of them. Reacting to negativity with negativity solves nothing, but it's so easy to do. If people make comments now I usually just smile and repeat their statement in a questioning tone, making them realise what they've actually just said. I feel this makes me feel better, and informs them on how to comment in the future. 

I can never erase the comments I made when I felt so bad about myself that I had to shoot other people down too, but accepting that they were an ignorant mistake and reflection of my own insecurities means that I've grown up, and has made me understand that I was just a mis-informed child. I know now that by accepting this, I am no longer a bitter person, and I am well equipped to deal with comments in a positive way.

I hope you're all making good progress with the journey of self-love too.

Sophie Hartley xo

'Life isn't fair'

Reaching out to people I'm close to has always been a personal struggle. My beliefs have so often been invalidated by phrases such as this. It’s difficult for people to know what to say, especially when blame cannot be assigned to an individual. I'm fully aware that my life has not been fair. But somehow I always conclude that it’s my own fault. Growing up in a Catholic home and school environment taught me that I would be rewarded for being good, and punished for being bad. Films taught me that good people always had a happy ending, and bad people met a cruel end. And then I was punished in the cruellest way. My body was attacking me. So my thought process began to establish that I had acted in a bad way, and that I was not a good person. But that just was not true. I was a child. It’s so hard to remember that. Eight years old. And I expected myself to be able to deal with this diagnosis. The NHS expected me to be able to deal with this diagnosis. My ten year old sister was expected to deal with this. And people are wondering why there is such a mental health crisis arising. Patients have to willingly ask for psychiatric help when they are diagnosed. And when life is not fair, people keep to themselves because they ‘don’t want to bother anyone with their own problems’.

So yes, my life has not been fair. I have not been given the same opportunities as ‘normal’ people, and this is what I find so frustrating. I am the only person who can help me get better. I was the one who went through the entire physical and emotional trauma. It was me lying in that hospital bed, struggling just to stay alive. And you’re responding to my experiences with the phrase ‘life isn’t fair’? I think I'm aware of this. Bringing a generalisation of your attitude towards life does not validate my statement, whatever it may have been. Responding with ‘that must have been hard for you’ or even ‘shit, that sucks’ is more helpful than trying to compare my experience with your own, or anyone else’s. Also, apologising has quite a detrimental effect. When I explain my past to a new person, 90% of the time I receive an apology. They’re either an acquaintance, apologising for bringing it up, or a family member, apologising for the fact that it happened. This again links back to the natural human want to assign blame. And it makes the individual explaining their past feel guilty for making the other person sad/apologetic.

Overall, I feel like what I'm trying to explain is that you must carefully consider your response so as to validate people’s feelings. Avoiding stereotypical phrases like ‘life isn’t fair’ and ‘there’re people much worse off than you’ will help with this, and lessen the impact over time on the person suffering. After all, when your emotions are invalidated again and again, you stop trying to explain. You stop trying to reach out because it feels useless, and this is even more unfair. 

 

 

Sophie Hartley xo

MOST POSITIVE POST YET

Hi everyone, thought I'd end the year on a positive post for once. Also a tad of self-promotion. 

As previously mentioned, I was involved in a calendar shoot earlier this year (and it was amazing to be a part of), the result of which is now on sale here:

 http://www.bcrt.org.uk/os_calendar.php 

It was such a brilliant idea of Elesha Turner's, who also happens to be a model for Models of Diversity; an agency who are promoting a very important message about 'disabled' beauty. They're pretty cool to check out too ( http://www.modelsofdiversity.org/ ).

I hope you're all feeling as well as you can through the holiday period, as it can be a difficult time. It becomes very easy to compare one year to another on Christmas day. I also feel for those having chemo right now, it's so centred around food and seeing people, two things you probably aren't truly feeling up for. If you're in hospital too, my thoughts are with you. 

Finally, here are a few shots from the calendar shoot:

Photos courtesy of Ian Randall, a super cool bone cancer survivor and photographer - http://www.ianrandallphotography.co.uk/

Expression

I think most people struggle to express how they truly feel. And I think because of this we tend to lose trust in others. Over the years I simply gave up trying to explain how I felt about the whole situation because no one ever understood. Right now I’m becoming frustrated just trying to explain how frustrating it is. I realise now the difference between what I think and what I actually say. Thoughts never stop. No one ever thinks of nothing. But worrying constantly is not normal. It’s not healthy. I feel like I can’t control my thoughts. I can’t stop thinking about certain things that I wish I could just forget. But the thoughts, they keep swirling around and around in my head until I feel as if I’m drowning, as if they’re a wave that has engulfed me and I start to drown. Sometimes I drift off in thought and have to take a deep breath as I come back into reality, just to stay living. I feel like everything I do is just to distract myself from my thoughts, but laying in bed at night what do I have to distract me? When I’m alone, what’s there to distract me? I feel like when I’m distracted, I’m happy. Does this mean I’m not any better than before? Maybe I've just been too busy to realise that I'm getting worse again.  

Quite honestly, I haven’t felt this bad in quite a long time. I hate to talk about my personal life rather than my cancer experience on here, but some people might relate to this. This month I found out that my ex has moved on, and I know that here is not the place to vent my pathetic girl problems but I have found it quite difficult. It kind of hit my like a punch to the face to be honest, and I don’t even know why. I just keep imagining how much happier he must be with her. How he doesn't have to deal with my unstable emotions or neediness or bitterness or... disability. Part of me doesn’t want to post this in case he reads it, but then I remember that he wouldn’t bother. I need to stop being so self-absorbed. But I just feel like I told him more than anyone about my illness, even though he never understood. And he came with me to the Bone Cancer conference earlier this year. It was so hard for me to share that with someone, but I thought that I could trust him. I feel like an idiot for letting someone get so close to me. I think that’s why I'm finding it more difficult to share things now. I feel that if I write about something openly, people could use it against me. But if I don’t write about them, who will? It’s worth my pride if it helps someone. I wish someone had validated my thoughts when I was ill, and I hope that by sharing mine, some of you will feel validated in your thoughts and actions, even if they seem crazy at the time.

Sophie xo 

'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