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

10 Things to do for a Child With Cancer

I recently wrote this list for my sister's blog, but it's completely relevant for mine- I don't know why I hadn't thought of it before! I think that advice type posts would be a really positive addition to my blog rather than just stories of personal experience, as personal posts can be difficult to write at times.

So here it is, 10 things to do for a child with cancer (applicable for anyone visiting during chemo/spending time with them during treatment and after):

• Bring their favourite foods

Their tastes buds will probably change throughout treatment, but favourites will probably remain favourites. I would take a favourite food of each flavour type, e.g. sweet/savoury/fruity/sour, in the hope that they would crave one of them. Also, if you’re visiting during chemo; bring mints! Certain types of chemotherapy give you an strong metallic taste out of nowhere and it’s awful. Really bad. Soft mints are the best because you can spread them around your mouth in the hope of combatting it. Even the nurses carry around mints for times of desperation.

• Hug them

As with all children, physical affection will help to calm them. A hug is the best thing to do when they are upset because it literally reduces stress levels (as oxytocin is released into our bodies, which reduces heart rate and cortisol in our blood) it’s science. The child is also around a lot of medical professionals who aren’t really allowed to give hugs etc, so they are really needed from family and friends. This will also hep to combat feelings of loneliness for you both. 

• Ask them how they’re really feeling and let them explain

This is really important for children, especially when all their medical decisions are made by their parents. They need to have control over some things, because they have none a lot of the time. By asking them how they feel about it and letting them explain why they feel this way, it not only allows them to become a more emotionally developed individual, but it lets you understand how to work through problems with their view in mind (which may understandably be very difficult to hear, but at least they know you’re on their side). It will also make you feel like more of a team when fighting this disease and make them feel less isolated, especially if you relate to how they’re feeling and work out how to improve their negative feelings. Note: ask them in a safe place where you know you can talk to someone straight after, as it will be difficult for you to hear from them. 

• LISTEN

I understand that this point is very similar to the last, but it is the most important thing to do. A child’s life has just been completely disrupted and so has yours. They have to listen to you tell them what treatment they need and how their life will change from now on. And thats a really impossibly difficult thing for you to do, and most children know this. They will be able to sense how devastated you are, and this might result in them not talking to you so that they don’t upset you; and this is very emotionally damaging long term. To avoid this distant relationship forming, it’s imperative that you listen to them. Try to really take it in what they’re saying and react well to it; its the most valuable knowledge you can get. This is also true for any siblings. You must just listen, without trying to force an opinion on them or complete their sentences, just sit and absorb.

• Use charity websites for first-hand advice

The fact that this is something I can advise is amazing in itself to me. When I was diagnosed, there was little to no help out there that we could easily access. Now there is a wealth of information available, the most valuable I feel being personal stories and blogs. Online medical journals are something you should avoid at all costs, whereas personal stories of hope are a very positive resource that can really help you to feel less alone and can even open up communication lines between you and people going through the same ordeal/people who have come out the other side. Even though no two cancer journeys are the same, many elements are shared and you can always find general tips and tricks to deal with these things, especially with the same chemotherapy type. There are often support line number on these sites, which would be really useful in times of helplessness and emptiness. 

• Adapt family days out to include them/siblings

This is something that often gets pushed to the sidelines when times get really tough and chemotherapy affects your child’s abilities/immune system/appetite. However, special day activities are really important in keeping the family unit strong; especially because of the impact on the siblings, who often get far less attention and can become redundant members. This can be inexpensive, which is such an advantage due to the financial strain cancer treatment can cause, you just have to get creative with it. I’m sure there are plenty of websites and magazines about having fun family days on a budget, and these will be starting points that can be adapted to suit your child’s capabilities. Often childlike ideas are the best, such as building a duvet fort and watching disney films in it. Although, it’s important to try and let any siblings have their own time with parents and their own time with their sick brother/sister, as they did before. Both this ‘alone time’ and having family days will help to maintain a level of ‘normality’ in the child’s life, which is so important considering everything that’s happening to them. 

• Celebrate small victories

When life is really hard, it’s important to realise how much you’ve had to fight your way through. I feel that the most positive way to do this is by celebrating a win. Whether that win is getting good blood work back or making it through a whole school day, it is important to recognise it. When the world hasn’t given you much to be thankful for, be thankful for how much work you’ve all put in to making these little things happen. It’s again important to do this for siblings/parents as well to recognise the fact that it is difficult for everyone right now, and achieving more than getting out of bed is a feat in itself. Celebrations can be so simple, like a family selfie or a ‘cheers’ at the beginning of dinner. 

• Keep a diary/sketchbook

This might seem a completely ridiculous thing to take up at such a time, but it really would help everyone in the immediate family (especially siblings). Writing down feelings is a really useful tool for processing your emotions, and getting them out of your head and on to paper is a proven form of therapy. This will help to stop bursts of rage in front of others, because you will be confronting your thoughts instead of ignoring them, which is psychologically damaging (especially in the long term) and causes emotions to emerge uncontrollably. A diary would also help you to keep a timeline of this time in your life, which might allow you to keep more structure and organise your time better- as you will be able to keep track of appointments etc. Alternatively, if you are not inclined to keep a diary, a sketchbook would be a good option. You don’t have to be an artist to do this at all, just doodling little comics of something funny that happened that day would be good as a mindfulness tool. This will also be really useful to see how your moods have been and whether there are any patterns you could try to ease, e.g. organising a coffee with a close friend the day before the child’s chemo bout because you know that you feel really depressed on this particular day.

• Maintain self-care

It’s so easy to ignore your own needs when a child is facing chemotherapy, because you feel that they are much worse off and that you cannot feel bad for yourself because of what they’re going through. This attitude will only help for a very short space of time. You can’t ignore how hard this is for yourself, and getting help with this is absolutely nothing to be ashamed of- would you think another parent/friend of a child having chemotherapy would be ok? Getting help is the best thing you can do for you and your child/children. This can be talking to friends/family, going to the gym to burn off some steam, or talking to a councillor online/in person (although making another set of appointments may feel like too much hassle). I would encourage taking some time for yourself at the end of the day when you’ve put the child/children to bed to practice mindfulness, which comes in plenty of forms- you simply find one that you click with naturally. Meditation might seem pointless to you, but going for a jog might seem like something you could incorporate somewhere.

• Learn to accept the post-cancer survivor 

This will be the most difficult thing to do on this list. There’s a global misconception that after treatment your child will go back to their ‘old selves’, and believing in this will be very psychologically damaging for the whole family. It is a life-changing event, and it’s awful; but you can’t pretend it hasn’t happened. You will have a lot of ‘what ifs’ and these will often turn into negative thought cycles, which is exactly what happens when you mourn someone. It took me a long time to realise that we were all in mourning of the ‘pre-cancer’ me. Everyone was, we just didn’t realise it; because of the pressure to be happy that I has survived. But a new version of me was born after cancer, how could it not? After all the treatment and emotional turmoil, everyone would change; you have to to cope. And it’s crucial to accept the new version of the child, because they will try to please you by pretending to be their old selves and eventually lose who they actually are. It’s important to remember that any child would change quite a bit during the actual duration of treatment, which for me was an entire year. So, you will have to mourn, but at least understanding this will allow you to eventually stop trying to get their/your ‘old/normal’ life back. This will be a lot better for you long term, and help you realise why you’re often feeling the opposite to how you think you should, e.g. devastated instead of appreciative.

I hope you find this post of use, even if it doesn't quite fit with my usual survival theme. Hopefully advice like this will make survival slightly less traumatic for children in the future!

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

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/

'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 

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

Addiction

This quote is the truth. And I know it's meant to be a deep profound metaphor for being with someone you love or self-harm or listening to music, but for me it is quite literal. During treatment I was given a lot of pain meds. In recovery for my major surgeries I was given morphine. And after all the pain and worry and stress that treatment put me under, morphine was like an angel. All I had to do was press a button and my whole body felt ok again. My leg didn't hurt. My muscles didn't ache. I felt ok again, like before diagnosis.
Then it was taken away. My legs hurt again, my body was heavy and slow, I was the fragile chemo patient again.
Then a second wave of happiness. Codeine. Codeine was allowed. I could take it at home, I could go to the doctor and ask for more. And I'd get more. 100 tablets at a time. It was easy. It took the pain away.
I became 100% dependent on codeine. I had a codeine for breakfast, lunch and dinner. Nothing could hurt me. Physio felt fantastic, I didn't worry about anything, it took the pressure off.
This addiction seemed harmless. Do what makes you happy, right?
But happiness is temporary. When the codeine started to wear off, real life came down on me like a ton of bricks. 'I need to sort out my life, I need to think about the future, I need to do apply to uni, I need to focus on school...'
And so I'd take it again. And all these thoughts would melt away and everything would be ok again.
The real addiction to codeine started with the illazrov frame in July 2012, and there wasn't a day I didn't take at least one codeine until December 15th 2013. Something in my mind flipped that day and I decided not to take it anymore. It wasn't worth the stomach pain from taking so many meds, the headaches, the 'hangovers', the complete lack of focus, the 2am crying on my bedroom floor.
And I haven't taken it since then. And I've thought about taking it every day so far. There are still a few packets hidden in my underwear drawer for emergencies.
So drug addiction is probably one of the strangest outcomes of having cancer, but my blog is all about the truth.

Sophie xo  

The illazrov frame

Having a titanium prosthesis instead of a knee comes with a few complications. In my case, I had to have quite a few procedures due to the implications of bone growing whilst metal does not. Because I was only 8 when they found the tumor, I had obviously not hit puberty yet and so had quite a bit of growing to do. In order to combat this, the prosthesis could be lengthened a few inches by a simple operation, which I had a few times over the ages of 10-15. This evened my legs out for a while, but my left leg kept growing. Because the prosthesis could not be lengthened any further, they decided to remove the growth plates surrounding my left knee in another simple operation. However, my strong will to grow didn't seem to stop completely. This left me with one leg one inch (2.5cm) shorter than the other, causing quite a bit of pain and a very bad limp. 

So, they made the decision to stretch my actual bone, and it was quite a horrific experience. This was the period of my life in which I became severely depressed, but it had to be done.  

The whole process involved an illazrov frame:

The basic physics of this is that a set of pins pierce through the bone on either side of a clean break, which is the first step of the operation. Then the external frame is fitted with three pillars running in between the two sets of pins on circular frames. On these pillars are nuts which you tighten four times a day, every day in order to grow 1mm. So the longer the difference is between the lengths of bone, the longer you need the frame on for. You also have to wait about a month (if I remember correctly) before starting to turn the nut, and after you have lengthened it to match the difference (so in my case I only lengthened it for 25 days because 1mm = 1 day). However, my bone did not grow back at the rate it should have. This increased the time I had to have the cage on for, which was a huge trigger for my depression. I was absolutely heart broken when I went for my check up and they told me I had to keep it on for another month. 

So, to explain this part of my treatment better, I have a timeline of photos for you guys. 

1. An x-ray of my legs with the inch difference between left and right. 

(Look at the middle of my knee, it's the easiest point of comparison)

2. My legs the day before the operation. July 4th 2012.

3. The day of the operation. July 5th 2012.

4. Two months later, the start of sixth from with some unique tights. September 2012.

5. Jeans!

6. Just after I'd finished lengthening the 25mm. 

Waiting for the bone to grow back and fill in the inch gap. Septmeber 2012.

7. FINALLY the day of the operation to remove the frame. November 30th 2012.

8. The day after the operation. Complications. 

My bone had not grown back strong enough for me to have a below-the-knee cast.

This is what they tried to avoid by keeping the frame on longer but sadly it did not work. 

9. Getting a below the knee cast. January 2013.

10... No more casts! June 2013.

11. On the inside: two legs the same length :) 

And that was that. One year and a pair of straight legs.

Sophie xo

Mourning

In my mind there is a distinct line between pre-cancer and post-cancer Sophie. I think of my life as before April 21^st 2004, and after April 21^st 2004. I’ve thought of my life like this since diagnosis, when my life changed in a way that I could have never imagined. This is quite a normal thing to do, have a pivotal moment as a frame that you timeline your life around, especially as a child or when your life is at risk. What I also do is think of myself as two separate people. I’m not sure if this is normal, but maybe other people feel it too. I feel like pre-cancer Sophie died and post-cancer Sophie is who I am now. Some of my family members feel the same way, and I think that’s part of the reason why we have not dealt with things very well. When I was in therapy my psychiatrist explained to me that I felt depressed partly because I was in a state of grievance, I still am in a state of grievance, of pre-cancer Sophie. All I wanted was for her to come back, but she never could, and thus ‘pre-cancer Sophie’ had died. It seemed so surreal to me that I could actually be in mourning of myself but when I really thought about it, it did start to make sense. It was like someone took me out of my happy life and shook me until I changed into someone I didn’t want to be in this new and scary world. As with all types of grief, time starts to heal the wound, but it never really goes away. I would liken it to an emotional scar; the most painful when its fresh but it will always be there and you will always see and remember the cause of it.

I think I will always miss pre-cancer Sophie, although I have to accept that I will never be her again.

Sophie xo

Confidence

During treatment, I appeared as quite confident to the outside world. I would smile and walk around without a hat/headscarf on and let everyone see how ok I was. Again, this wasn’t how I felt. To be honest, I didn’t care so much about not having any hair whilst I was having chemo because I had bigger things to worry about. After treatment was when I first began to realise that things wouldn’t go back to how they were before. My hair grew back very thin and my legs just looked like a disaster to me. I had this big idea of what I’d look like when I was better and it just wasn’t happening. What I wanted couldn’t happen. This took away my confidence.

I’m often torn between how I should feel. I feel like I should be beyond glad that I survived this awful disease, but I also feel that being happy is disrespectful to those that did not make it. I feel like another person could have survived instead of me, and I don’t know whether to be happy in order to honour that person or if I should feel guilty. Sadly, it is often the latter.

I feel that the physical ramifications of bone cancer have been the biggest drain on my confidence, especially regarding my mobility. I think the people my age saw me being in a wheelchair as a burden to them, because why would they want to push someone around/carry their bag etc.? This knocked me back quite a way, especially in the later years of treatment. I just felt like I drained the fun out of every situation so I started to shut myself away in order to not burden them further. During my last real treatment for my leg, which caused me to need a wheelchair, my group of friends dwindled to one person who was kind enough to stay. This was what really hit home to me because I decided that no one wanted me around and that I made people sad with the way I looked and that I brought nothing to the world but sadness and disgust. This was also when I was diagnosed with severe depression, because my thoughts just snowballed into a huge pile of self hate and embarrassment, thus cancer destroyed my confidence. BUT I have it back. I’m more confident now than I have ever been, the people I’m friends with now have certainly helped with this, especially my boyfriend and my sister. The most important thing you need to do to deal with confidence issues is get the right people in your life. Create a network of people you can depend on and let them depend on you too. Spend less time with the people that make you feel bad about yourself, and get them out of your life if you can.

Sophie xo

Lonliness

Cancer is a lonely thing to have, especially when it's as rare as bone cancer / Ewing's sarcoma. I never understood people who wanted to be different because I felt different for the wrong reason. I know that there are other people out there who've had Ewing's, but they aren't people that I know. There is just a complete lack of understanding from people who haven't experienced cancer; it's like trying to explain the colour red to a blind person. I am thankful for this though, because I would not wish that upon anyone, but it kind of sucks for me.

Just after treatment I was set up to meet someone who had also survived Ewing's and I was so excited to actually meet someone who understood and I set myself up to connect with this person, but unfortunately it didn't help me. Being 9, I went with my mum to this woman's flat near where I live. We got there and my hope of making a friend who understood started to disintegrate. She was around 30, with a husband and a child. She had Ewing's in her fibula, which is the bone behind your shin that you don't actually need. This meant that her treatment consisted of an operation to remove part of that bone, without any chemo or lasting affects. As she stood, cigarette in hand, I decided that I was completely alone in this. 

That's part of the reason that I like getting involved in events to do with cancer charities and why I went to the Bone Cancer Research Conference in June. The conference was exactly what I needed, although I had to leave early which sucked.
So this is an open invite for anyone who is suffering from / has survived / is a parent/child/sibling of someone suffering from bone cancer, if you'd like to speak to me about anything, rant at me, have a chat about how you're feeling, or just share a good cry, add me on facebook: Sophie Hartley, and message me there or follow me on twitter @sophielouisaxo and DM me :)
I'll try to help as much as I can but obviously, I am not a professional so I'm sorry in advance that I can't help more.

Sophie xo

Photos of pre-during-post cancer Sophie

Pre-cancer

(My hair was nothing less than fabulously chaotic) 

During Treatment

Post-treatment

(First Christmas after treatment)

(prom)

(today)

Physical vs Emotional

In today's world, internalising emotions is an accepted way to deal with them. This is such a destructive coping strategy that it actually causes more damage mentally than showing emotion in ways we have deemed unacceptable, e.g. crying at work or having angry outbursts. It also allows people to slip through the net of mental health care, because if you say you are fine, they will think that you're fine. This is what happened to me. I was too young to understand and thought that any mention of being sad would be rejected, after everyone had told me how lucky I was to survive. I kept thinking that I should be happy, I should be happy that I survived and I should be happy everyday that I'm alive because so many people didn't have the opportunity.

However, trying to make yourself feel happy will not result in happiness. I just acted happy to hide the sadness inside. In my mind being given the all clear was like this big, shimmering horizon where all my dreams would come true, and for a while, it was. Then life started to become routine. I went to school, we were a normal family, my hair grew back, I was ok. But I wasn't ok, I was far from ok. I don't understand why people thought that having cancer as a child wouldn't have a huge impact on my emotional state. I think it's because people see it as a good, that I survived cancer, and forgot that I actually had cancer. 

So once I was ok physically, my aftercare was to stop. But I needed more. I needed someone to talk me through what I was feeling and why. It was 7 years later that I finally got the help I needed. 

What I'd love people to become more aware of through reading my blog is that mental and emotional care and aftercare of cancer patients is just as important as physical care. My goal is for every survivor of childhood cancer to be enrolled in a talking therapy programme to help them deal with the trauma they've experienced. 

Sophie xo