Bone Cancer Research Trust Conference

On May 7th, my boyfriend and I attended the Bone Cancer Research Trust Conference in Leeds. I was extremely anxious about whether it would be worth travelling for 6 hours and paying for train tickets/a hotel room because I'm pretty broke as a student. In hindsight, I've realised this anxiety was actually about whether the conference would upset me, but I didn’t want to admit it to myself. Initially, I felt like we were kind of outsiders because everyone seemed to know each other, so we sat down and kept to ourselves for the most part, excluding a few people I had met previously for the charity calendar. But this was not the point of travelling all that way, so I knew I had to start initiating conversations. I found this surprisingly difficult compared to normal, which was definitely linked to guilty feelings and high self-expectations. 
This was mainly because the charity was founded by bereaved parents, and they were all present for the conference. I spoke to a few of them and felt both motivated and pressured, which then escalated into guilt. I felt motivated to start doing more for charity and continuing to use my story to help increase awareness about bone cancer, but I also felt pressured to be all-consumed by these things rather than balancing them with other aspects of my life. For a good few weeks, I could hardly think of anything but the fact that I have yet to do anything incredible with my life and that I haven’t got any solid plans to hold charitable events in the future. This was especially tough because it was a just before the end of my first year at university, and my art seemed pointless and dull compared to my cancer journey as it played over and over in my head. I knew that I would have to merge these two huge aspects of my life, but it was too late for that particular project. So it would have to be a personal summer project, not that I’ve started it yet with a move on the horizon. 
So, back to the conference itself. I gained a lot of knowledge about the medical side of both Ewing’s and Osteo sarcoma, including plans for the future and how we had got to this point in research and development. And I must say, I was quite motivated by the lack of research so far. It seemed that treatment would either work or have no impact, with no pattern to indicate why. This really struck home in the Q&A time at the end of the talk, when many of the bereaved parents made their voices heard. This was another factor that made me feel embarrassed and guilty, because my body had simply reacted well, and all the times I’d been called ‘brave’ sort of flashed before my eyes. I’ve never liked that phrase. I feel that it demeans the fight of people that have not survived and I find it quite disrespectful (even though I know that people mean the best). So absorbing this information perhaps deepened my guilty feelings to a point where I felt uncomfortable talking about my journey and issues, even though I gained so much valuable knowledge.
However, I came away from the conference with a brain full of new insight into the charity that I support and I have no regrets about attending. The guilty feelings were a very negative thing to have taken away from this experience, but they were balanced by positive feelings of gratitude for my chance at life and I felt humbled by the stories that I’d heard. It’s so easy to focus on the bad thoughts about a situation, but I know that going was the right choice. I always have a somewhat ridiculous expectation to meet people around my age that’ve had the same treatment and age of diagnosis at event such as these, which obviously doesn’t happen due to the uniqueness and rarity of cancer/cancer treatment, and I therefore always come away slightly disappointed. But hopefully, this expectation will one day be met and I’ll find a kindred soul. 
Overall, I found this conference educational in many ways, and I find myself more motivated to become involved in more charity work and functions from now on, including this blog! Also I hope everyone (if anyone?) that reads my blog is doing well!

Sophie xo

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

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/