Hey everybody! My name is Crystal and about three years ago I was diagnosed with a rare facial bone cancer. The cancer is gone (thank god) but the tumor took a majority of my right cheek and top teeth. I'm still going through reconstruction, but I look a lot different then what I did before and I use my hair to cover my cheek to feel confident in public ❤️.
I have been to many young people cancer events and functions, but feel I'm not as accepted by some people as I would like to be. I hope the longer I emmerse myself with changing faces I won't feel as alone anymore ❤️❤️. 😁
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Crystal246
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Welcome to the Changing Faces Community, Crystal. It sounds like you've been through a lot and so thank you for sharing your situation with everyone. Many people we talk to say they feel 'unaccepted' and I'm sure people will recognise some of what you're saying. Can you say more about the settings where you have felt this?
In my teenage/young people cancer community I've found peopke are wary getting to know me and I feel excluded in conversations. I know its because of my apperence because this has never happened to me before.
I think it would be different because we had all been through the same thing (no matter how different) but some NOT ALL treat me like an outcast.
Hi Crystal, thank you for telling your story. I was born with a very large vascular malformation all down the right hand said of my body and spent most of my teenage years feeling anxious and different to my peers. Over the years I have realised that everyone has something they are insecure or embarrassed about, it’s just that mine is visible and unusual to most people. Like you I found ways to cover my malformation with clothes and make up but I now don’t feel the need. For me having the support of friends and family really helped me to be confident in my own body. I know it’s easy for someone else to say but embrace who you are, everyone is unique and you definitely are not alone! X
Thanks so much for your kind words x I have just started to feel confident about myself by travelling to London by myself (for example) and doing some work experience in a public place ❤️. It took me two years and a lot of young cancer events for me to feel comfortable, but I did and now I'm here 😁.
I just needed tile to process and sulk for a bit for me to feel comfortable with myself and now I am.
I do agree with the more older you are the more mentally strong you are 😁 so I'm glad.
Hi Crystal. I had RetinoBlastoma and had my right eye removed at the age of 6 months. Then I was rushed up to hospital in Edinburgh for them to blast the right side of my face with radiation to try to kill off any residual cancers. However, way back in 1950, they had no idea of the side effects of using radiation.
Nowadays they can pinpoint the cells they wish to zap but in those days it was a blanket job. The effect of using radiation in that manner shrank the right side of my face and surgeons spent the next 20 years trying to bring it forward again - without much success.
I did not really go to school until the age of 11 because I was always in one hospital or another - often for periods of 9 months. So, although I had some idea of what it was like to live with a difference, it did not really become apparent until I went to secondary school.
It was only then that the isolation, bullying, both verbally and physically, really took centre stage in my life. Although I was quite athletic, I was always last to be picked for any teams, never invited to parties etc. I am sure many will recognise the feeling that you are the only person in the world like you and why are you so different? Reaching its peak at about age 15 and considering suicide was the lowest that I became.
Still going through at least 2 operations per year at age 20 I decided that if they cannot accept me for who I am, then that is their problem and not mine. That was so much easier to say at age 20 than it would have been at age 14 or 15!
I now wear the latest of many dozens of prostheses that have been created for me over the years and it has been a fantastic improvement on what was available just 10 years ago.
I have a terrific Anaplastologist who now creats my prostheses and it can take her approximately 12 - 15 visits to her lab for her to be happy with her latest creation. She is so particular to get the colour of the iris, the sclera and skin tones of my face and facial structure with all the creases that come with age correct, that once in position it is difficult to tell from the other side of my face - but I still know.
After that long missive what I learned most from all those adventures was to be proud of who you are and if people do have a problem - it is their problem and NOT yours.
Best wishes and good luck with your future surgery Crystal.
I'm so terribly sorry that you had to go through that! I too have always wondered why me? I was 'normal' until this point and the cancer literally came out of nowhere in the most random places...it was like BAM! and then I was different.
But you know what? I wouldn't change it for the world because not only have I grown as a person, but I've been able to pick out fake friends from real ones as my appearance changed and I've also been able to become a better person because of this and gain loads of opportunities that I wouldn't have gotten before.
Operations suck and the constant fear of me never having a partner again scares me, but I always have up and down days where I am positive and then I'm not, but thank you so much for your story because in some ways in similar to mine.
I was having a rough day yesterday and another one this morning, but your reply has meant the world to me! Thank you for sharing your story 💖💖💖
You are 100% correct Crystal when you say that you find out who your real friends are.
I too would not have changed the life that I have lived up until now. I have been married twice (my first wife died very suddenly in 1998) and we have two wonderful sons (Fraser and Lindsay). I married again a couple of years or so later and I have been so fortunate to know such fantastic ladies.
However, I there is one thing that I have learned it is that someone always has it worse than I do which is probably why I do what I do now.
Following a series of 3 strokes in 1993 and two years of feeling sorry for myself, I began to help other disabled people - initially to claim benefits to which they were entitled but then on almost every other issue.
So, I always look for the positive in people and attempt to maximise their potential. Needless to say, I don't charge anyone for my help and everything is 100% confidential. There are so many disabled people who need help that I work 7 days per week on their behalf. There is never the need to look for something to do.
Yes being disfigured has had negative impacts on my life but they are just another barrier to overcome.
I have never known what it is like to see with 2 eyes but that has never stopped me from doing anything at all.
Going through teenage years is difficult for everyone but for people who look different it is especially hard. However, thinking back to those times, I believe that eventually I probably began to make my own excuses of why I would not go to this or that event, rather than facing the real reasons.
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Rosacea
Living with a facial disfigurement
Lip vitiligo, anxiety/depression/suicial thoughts from the many stares I get, people who look away from my face & bite theirs in concern
