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

Summer 2015

I would like to start by apologising for not posting in so long.
I've been through quite a terrible depression relapse that I denied the existence of for a couple of months, and I have only just begun to claw my way out of it. I know that I'm not quite myself yet, but I'm beginning to feel glimmers of my 'happy' self coming through most days.
I can't believe that the last time I posted was at the beginning of July. So much has happened since then, which is exactly why I've been so vacant on here.
I spent my summer living at my sister's student house, which was filled with both joy and sadness. It was so exciting to move away from home and do things extremely independently, I was also boasting about how this would prepare me for University life, and in a way it did. However, by the end I started to feel low again without much internal explanation.
I knew that my mum didn't want me to leave her for the summer, but she let me anyway, and my dad was quite vacant in my life by this time, so my summer adventure started with a lift from my childhood best- friend, who drove the two hours to Leamington without hesitation. I was so ready to do this. The first month was very exciting, I handed out CVs on my first day there, and got a job straight away in a gorgeous cafe with lovely people. Steph (my sister) was working at wetherspoons and so worked odd shifts, which often left me alone for long periods of time, but I don't remember these being particularly bad. I always knew that she'd come home later and we'd enjoy ourselves together.
I then had to get another job because of my financial situation, which felt especially important with uni coming up. So I got an awful second job at a Morrison's cafe, which took away the magic of my summer. I started at 6.30 am, so had to wake up at 5.15 in a cold student house four days a week. The job itself was also completely unenjoyable. All the staff seemed to also hate their jobs there and my motivation was struggling. I wanted to call in sick everyday because the job made me sick of everything. This job lasted until September when I moved home, purely because of the financial gain.
I honestly don't know if it was good for me to live with Steph over the summer. I switched from thinking it was the best decision ever to wondering what it would have been like at home. It was what I wanted at the time, but I'm not sure if it was what I needed. I don't regret it, but I don't know whether it was the right choice.
I think what I was really doing was distracting myself. I could pretend again. I could pretend that my parents were still at home together and that things were still 'ok', which is always my initial reaction to bad things happening in my life. This is why I'm not sure whether moving out was the right thing to do for my emotional wellbeing. It was at the time, because I loved staying with Steph, but it then pushed back my inevitable breakdown to the first term of Uni, which is the least ideal time to plunge into a deep bout of depression.
What I really truly wanted out of my summer was for it to be like old summers, I wanted that continuity with everything else changing; but because everything else changed, there was no way that was going to stay the same. And I knew this, and I still know this now, but I still yearn for the impossible- which has both beneficial and destructive sides to it (which I'll explain in a different post, because it's quite a complicated topic for me). All I wanted was to stay at home with Steph, 'wasting' the day with junk food, awful tv and cuddling Teddy (my pet bunny). But I soon realised that this was never going to happen again, and 'never going to happen again's were what brought on this depression relapse.
I was just trying to cling on to the last pieces of my childhood, but I can't ever get them back now. And realising this has brought back a lot of the same feelings that I had after previous events, like my cancer diagnosis.
My whole world changed again. And it's taken me a long time to deal with it, but I'm really trying and really hoping that with my knowledge I have gained from therapy I can deal with it better this time. Even if my depression relapse tries to convince me otherwise.

Sophie xo

What's Happened

In order to understand how much my life has changed in the past six months, I'm going to compose a list of what's happened.
So, as you already know, I went through my first break-up and my Dad had a nervous breakdown. This happened in October and December 2014.
At this time, I was studying an Art Foundation Course in Reading. This involved two hours of walking a day which really dragged my leg back to a very painful place. Even more frustratingly, I passed my driving test but couldn't afford a car, and was not able to use anyone else's. So I had no option but to walk, as no one offered me a solution and I couldn't afford taxis/buses myself earing about £40 a week. So my chronic pain increased dramatically.
Then my Dad spent a month in a psychiatric ward. This was a hard time, especially around Christmas.
He came out quite different, but in a good way, and things improved slightly.
Then my Mum and Dad broke up. It was a very one-sided thing, and made everything a lot more difficult, awkward and hurtful.
This meant that they put our house up for sale, and we should be moving in a few month's time.
Following this, my Grandad passed away. And it was cancer that took him.

This is a lot to happen in less than a year, but what worries me is that I haven't seemed to have reacted yet. I think that I now expect these things to happen, so it doesn't surprise me anymore. This sounds awfully sad, but I feel that I now appreciate it a lot more when something good actually happens; so I am thankful for the improved perspective it has given me.

I will make more detailed posts in the very near future, see you then

 

Sophie xo

2015

The past year has been one of the most difficult in my life. I've not kept up with my blog because I just couldn't find the emotional energy, but I'm not going to avoid the problem anymore; I'm going to work through it post by post.
The beginning of this year saw me revisit my psychologist after about a year of not needing a session. And that was hard for me to deal with. I felt like all of my tireless work to become stable again had just fallen off the face of the earth. I felt ashamed of myself to go back, which I know now is not a healthy thought, and no one should feel this way about revisiting therapy. I have been really struggling, and getting help again was the best thing I could've done.
So, what really made me get help again were two huge life events for me emotionally. Firstly, my boyfriend at the time broke up with me (which I can now laugh about, what a waste), and secondly, my Dad had a nervous breakdown.
Now, these two things came at quite a close time, and I found myself in somewhat of a downward spiral. This was last winter, and so my sister and most of my friends had moved away to University, leaving me feeling quite alone. I know that I'm exceptionally good at hiding sadness- and I had let my walls fall down for this boyfriend, so I definitely could not allow myself to share my feelings due to the trust issues he left behind. So, I emailed my psychologist and booked myself in.
I visited her a few days ago, but I have recently moved to my sister's house and so our sessions will now be over the telephone. This scares me a little, although we did discuss that my mood would improve staying here rather than at home, so it should be enough contact.
I have stabilised enough now to be able to write about these things on here, so I have definitely improved emotionally. I feel that the past seven months have equipped me with more experience and knowledge of how to deal with exceptionally hard circumstances once more, although it did knock me back in my journey of recovery.
I discovered that your first relapse is terrifying. I took me so long to struggle back to stability, and crashed back in to depression so quickly. Everything sort of came rushing back- the guilt, the self questioning, the confusion... it was all so familiar that I just automatically switched back into those habits. And to make it worse, I felt like I had just deluded myself into thinking I was happy for that year. And looking at it now, I had. I'm in such a happier and healthier place now, and very thankful for that toxic relationship to be over.
I just need time. And now that college is over, I have time to deal with what's happened to my family, especially now that I'm finally completely over my first relationship.
I want to break up what I had considered one post into a timeline of posts, explaining the different emotions I've been feeling, and their link to the habits I learnt whilst coping with my cancer survival. It will be a hard journey, talking about my dad and my parents splitting up, but it's important for you and I to understand the wider impacts of a person having cancer on those around them- making sure not to give in to the guilty feelings surrounding it.

Sophie Hartley xo 

The Future

Over the past six months, my life has changed a lot. I will make another post about what's happened, but I know that it's going to emotional to write about so I need to take time to properly prepare myself.
It's made me think about the future and what I really want. I don't want to look back on my life with huge regrets and see opportunities that I missed. This is why I've been taking every opportunity to do things even though they're hard or embarrassing or disapproved of.
I know now that what I want to achieve in my life is to make people aware of the emotional side of cancer survival. And I will strive to make as many people understand as I can, because it's important. And each impact that I make will continue to make further impacts, so it will continue to create ripples.
I will continue to speak up about the issues, and hopefully my audience will continue to grow. In this way, the families who have been affected will have a better chance of seeing someone who's been through the same struggles, which may give them a greater understanding of how to deal with certain issues and what to avoid doing (e.g. trying to forget what's happened).
So now that I have more spare time, I' going to focus on spreading awareness even more. So stay tuned for many more posts to come!

 

Sophie Hartley 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

'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 

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