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