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 

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10 things you need to survive a bout of chemo

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

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

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

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

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

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

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

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

9 ~ Determination. 

10 ~ Hope. 

Comment and share what helped you survive chemo :) 

Sophie xo

Frustration

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

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

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

Sophie xo

Apology

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

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

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

Sophie xo

Understanding

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

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

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

Sophie xo

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

Guilt

I think the most burdensome emotion that having cancer made me feel was in fact guilt. This seemed like a perfectly normal thing to me, and it was only when in therapy that I was made to realise I shouldn't feel that way. I feel guilty because I feel like I bought so much pain and sadness to everyone around me. Destructive thoughts swirl around in my mind that I ruined my parents' and my sister's lives, and my whole family felt sad because of me. These thoughts are very strongly linked to memories of family members crying when they saw me in hospital/when my hair fell out.
I find it difficult to separate myself from the cancer, because I see it as being a part of me. What I need to realise is that it was cancer that made everyone sad, and not me. It's like in The Fault In Our Stars, which is my favorite book due to it's perfection, where Hazel Grace describes herself as a grenade. I was that grenade. When I was diagnosed it exploded and sent out ripples of sadness and pain to everyone involved in my life. I felt like I was the stone that dropped into the water and sent out these huge waves of sadness, affecting my immediate family most, then my extended family, then everyone else around me. The most gratifying moment of therapy for me was when my psychiatrist explained that the stone was cancer, and I was overcome by the first wave, I was affected the most. This really helped me to visualise the fact that cancer and I are separate entities.
However, I still have some toxic thoughts centred around the reasoning that if I had never been born, no one would have had their lives ruined, and everyone would be happier/better off. If any of you also feel this way, please please please remember that it is cancer that caused the destruction; cancer is the grenade, not you.

Sophie xo

'Normality'

One of the most difficult things about having and surviving cancer is understanding normality, because 'normality' is no longer achievable. I think this is one of the things that holds me back in trying to accept the fact that I've had cancer. For years I kept trying to keep things as they were before I was diagnosed in an attempt to pretend that the girl that had cancer wasn't me, and laying in bed at night I'd think about who I'd be now if I had been a normal child and what my life would be like. The idyllic life I created when I thought about this was nothing less than soul-destroying. I think a small part of me will always compare myself to the girl I should have been, but now that I'm finally beginning to accept that I was the little girl who had cancer, I'm thinking of her less and less.
The difficulty with this idea is that you become unsure of what normality is. In my mind there's a clear distinction between what was normal before diagnosis, during treatment, and post all-clear. The issue is that you don't want your normality to change. You keep striving to keep it the same and have this idea that after treatment your life will go back to normal, but this can't happen. You have to somehow accept that your life will not be the same, and that it's not better or worse than before, just different. I still struggle with this 8 years on, because I spent so long pretending it had never happened. It's taught me that denial is a poor coping strategy and that you must confront what's happened in order to eventually accept it.

Sophie xo

My Cancer Story

It all started when I went to see Polar Express at the cinema. I remember that quite vividly actually, we had to leave the cinema because I was crying too much. My dad took me to the walk-in centre where we waited for forever only for them to tell me there was nothing wrong with my leg, as I laid in agony clutching my swollen knee. This must have been around Christmas 2004, judging by the film.

The pain came and went, and each time it flared up my mum took me to the GP, from which we were always pushed away with the reassurance it was just growing pains. It took 4 months and countless appointments for one GP to push me through to get an x-ray, hence the importance now being placed on knowing the signs of bone cancer to shorten diagnosis time. This x-ray was on my knee, where I had explained the pain to be centered. The tumor was actually in my femur, but luckily the knee x-ray caught the edge of the mysterious glowing lump, which then meant I had to have an MRI scan on my whole leg to see where the tumor was/how big it was. This was all whilst being reassured it was fluid on the knee. So after the MRI scans came back and there was indeed a large glowing mass of cells, I was booked in for a biopsy.
The biopsy was at 9.00 AM on the 21st April 2005. The day my life changed forever. I was told I had cancer. My first reaction was "Am I going to die?", which my mother denied and told me I'd be ok, even though no one really knew.
The weeks that followed were simply awful. My life had changed from sitting in a classroom at primary school, learning how to spell and what triangles were, to being injected and scanned and taking every mediation under the sun. What was so structured and certain became chaos and it terrified me. I started chemotherapy very soon after diagnosis as the tumor was quite an advanced size of 7cm, due to the difficulty of diagnosing bone cancer. I had a bout of the strongest form of chemotherapy every three weeks until September, when the tumor had shrunk enough for it to be removed through a knee replacement. I then has a weaker type of chemotherapy every 3 weeks until February 2006, to make sure no cancer cells were left and able to form another tumor. I had a full round of scans after this, which showed another mysterious smudge. This however, wasn't actually anything (my mother blamed the toggles on my cardigan) but did set back my all-clear date to May 4th.
And that was the end of that hugely important segment of my life. I had 3 monthly check ups, then 6 monthly, and now yearly.
I think what makes bone cancer so cruel is that the actual cancer is not the only problem, because it affects the area so severely. As aforementioned, my tumor was in my right femur, causing me to need a knee replacement. This affected me in a more long-term way, due to the fact that whilst bone grows, metal does not, meaning that one leg continued to lengthen whilst my little leg better grew only into the name little leg. At first, this wasn't too much of an issue because the actual knee replacement could be lengthened by a simple procedure once the difference started to affect my walking. However, once this reached it's maximum and my teenage body kept growing, it became more of an issue. To combat this, I had the growth plate in my left leg removed to stop it growing. Problem solved, right? Ah, sadly nothing seems to be that simple. My legs somehow continued to drift further apart length-wise, which led to the worst leg-related procedure of my life. I had an illazrov frame fitted. Google at your peril. But after this, I was fixed. I'm ok now. I've survived, and I feel so privileged to have survived when so many have been lost to the awful disease, especially Ewing's Sarcoma. And for that I will be forever thankful.
Thanks for listening,

Sophie xo

My Cancer Story: A Summary

If you have obvious physical signs that you've had cancer, some people decide it is appropriate to ask what's happened when they first meet you or notice these things about you. In my case, it is my limp that most people pick up on. Although, this is becoming less obvious now which I would describe as lucky if it wasn't solely down to jaw clenching, eye scrunching, my leg's about to fall off exercise. The people who ask what's up with my leg are new people that weren't present during my treatment and so think I may have broken it or been involved in some exotic skiing accident or something like that. Their facial expression changes quite dramatically as I fumble around my cancer story, trying to shield them from the gory details whilst attempting to avoid the box in my brain with the cancer memories in. So, over the years, I have created a spiel that rolls off my tongue whenever I'm asked what's happened. It goes as follows:

Basically, I had Ewing's Sarcoma in my my right leg, which is a form of bone cancer. I was diagnosed in 2005 and had a year of chemotherapy and a knee replacement. That was when I was eight so since then I've had other operations on my legs to solve the issues caused by the fact that metal doesn't grow like bones do. 

That is then always followed up by 'Oh I'm so sorry' or other phrases along those lines, and sometimes other questions about what happened. But that's the spiel. That's the response stored in my brain on default when I'm questioned. There's obviously so much more to my story but that's not really something I want to share with those people. That's what I'm going to share with you through this blog. I feel that if you've found this blog and if you're still reading this you're interested and may have been personally affected by cancer, therefore my next post will be my full overall story. 

Sophie xo

Why this blog exists

As my blog title suggests, I have had cancer. I've had bone cancer and it pretty much sucked as much as you'd expect having cancer to suck. From my 18 months of therapy, my psychiatrist has deduced that avoidance is how I deal with it, but avoidance is bad and wrong and causes all kinds of insanity and so I must keep forcing myself to confront it, hence the existence of this blog. She didn't exactly tell me to share my thoughts about it with the entire internet, but suggested I write down my feelings about it or the few memories I haven't stored in the little box in my brain labelled 'do NOT enter // you will be sad // you will cry // your day will be ruined' in a diary or or pieces of paper. I didn't really see the point of this so I thought that making it available to people in the same situation as me might offer some help or reassurance and so it became useful somehow to share.
So, this blog is going to be about my cancer story, including accounts of memories from treatment, thoughts caused by cancer, and how I attempt to deal with them/why I think they exist, because sometimes it just helps to relate to someone that's actually been there and actually understands instead of saying they're sorry and wishing it had never happened.

Sophie xo