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