March 2016, Crystal, age 17, from West Bromwich noticed what looked like a small abscess on her gum. She visited her Dentist, who referred her for more tests. Just one week after her 18th birthday, Crystal, was told she had osteosarcoma, facial cancer in her upper right jaw.
Crystal has shared her story with us to raise awareness and because she believes if she found that one person who was going through the same thing that she went through, it would have made her journey a lot easier.
I went to the dentist first and they realised that my left front tooth was moving at an unusual angle. The lump at this point didn’t hurt or grow any bigger it just felt really hard. My dentist started to examine the lump, which I didn’t think it was a big deal until she started to get her supervisor and her other dentist co-workers into the room. I was very scared and anxious at this point; they were speaking in hushed tones and asked me to have an X-ray.
At this point having bone cancer was the furthest thought from my mind.
Crystal before having osteosarcoma
I honestly thought they were overreacting, especially as the X-ray came back all clear. But they did say they would still like to book me an appointment at my local hospital just to make sure everything was okay. I then visited my GP, who after an examination and further test thought it was an abscess and gave me some antibiotics and asked me to go back to see her, if it didn’t go down in a few weeks.
I thought that was the end of all this confusion and I would just take the antibiotics and then my bump would go down again. Unfortunately, that wasn’t the case.
I went to the hospital and was told I needed a biopsy to make sure no cancer cells were involved.
When I heard the word ‘cancer’ my heart immediately stopped, and I started to get anxious.
I had my biopsy and that's when it started to grow and grow until it became really painful and uncomfortable. It felt as if something was pushing against my gum to come out. My doctors were confused because my blood tests, CT scans, X-rays and body scans were clear, so it was decided that I should have a bigger operation to take our more samples.
The area where they did the operation in my face hurt so much and was swollen so bad that I didn’t recognise myself whenever I looked in the mirror. This made me feel really depressed.
After two weeks, my surgeon told me the news I was dreading. I had osteosarcoma, bone cancer. It was April 14th, 2016, a week after my 18th birthday.
I had chemotherapy for 7 months and it was probably one of the hardest challenges (at this point) that I had to deal with in my entire life. But I realised that when you look after yourself, have the support of your friends, family, nurses and doctors around you and have that drive to live and carry on . . . That’s when it starts to become easier.
I had spent more time in the hospital than I did out of the hospital because I had a very intense chemotherapy and because my cancer was classed as being 'aggressive' and the tumour was growing at excessive rate in a small amount of time. I couldn't eat, I got dehydrated and collapsed in my home at one stage and I lost a ton of weight.
During my chemotherapy my mum and sister told me my tumour had reduced in size, I didn't believe them at first. My sister suggested that whilst I was in the hospital, I should take pictures of my face after each week I had chemo because if I did this, then I would believe them and see for myself that the tumour had in fact reduced in size.
After I took her advice the weirdest thing happened, I started to get excited about each chemo treatment I had! You could imagine when I told my friends and family this, they looked at me like I was insane… but I really did start to get excited! As I compared my face from the previous week to the present, I did see a massive difference in my facial features as did the other doctors, nurses and patients on the ward.
This made me so happy because finally! I could actually SEE that the chemo was actually working and all of the times I felt sick, weak and tired were worth it.
I finished chemotherapy on January 2017, and then had my operation at UCLH, which involved having to remove a large portion of my right cheek, where the tumour was, a portion of my right lip and my entire upper jaw, apart from two upper back teeth on the left-hand side of my face.
I had to stay in hospital for the longest two weeks of my life and in London for a whole month. In a city, I had no knowledge of and with a face that looked worse than I originally started.
I thought that chemotherapy was hard. . . but I was very wrong. My surgeon gave me the all-clear and said there were no traces of the cancer left in the summer of that year. I am currently still going through facial reconstruction on my right cheek and gum because I don't have any upper teeth at the moment.
I felt scared and alone because I didn't see anybody like me going through what I went through, I believe if I found that one person who was going through the same thing that I went through, it would have made my journey a lot easier.
In 2017, I was stuck in my house, not wanting to talk or interact with anybody because I thought I looked hideous and I didn't want the stares or the looks. It wasn't until 2018, I decided that I should just forget feeling fearful and live my life that I started to feel happy again.
The residentials and activities that the young people cancer organisations do, really helped my confidence. Going sailing, music residential, Christmas parties and get togethers made me realise how many people don't care what I look like.
They care about the character inside of me. This is what had given me my strength this past year.
My advice to other is… Don't give up. However, cliché that sounds and no matter how hard things get, keep on going and never settle for anything.
If you think there are many obstacles in your way, find an opening and a way of going around that obstacle to reach your goal. Also, no matter how sick, tired and depressed you are always envision you getting better and healthier and think of all the things you are going to do when that happens. If you do that every day it gives you a goal to work hard towards. Even though it may feel like this is the end now and there is no hope, just realise you are still here and have a fighting chance.
Crystal, kindly shared her story with us in March 2019. For Bone Cancer Awareness Week 2021, Crystal shares how she is now, two and a half years on...
A lot has changed since the last article I did with the Bone Cancer Research Trust. The surgery used to be the only thing I wanted because I thought it would make me feel 'normal'. But since deciding to focus on my acting career by going to LAMDA drama school, I realised that the surgery and my looks were not everything. Acting gives me joy, and I am grateful every single day that I get to live my dream.
I know the right surgical team will be there when I am ready, but because I am no longer at risk of the cancer coming back in my face, I am content advocating for facial equality in the performing arts.
In 2020, I auditioned for the top three drama schools in the UK and got accepted into one - LAMDA. They saw something in me that no one else did and believed in my vision to bring more people with facial scars on stage and to the screen. Since 2020, I have been transferred from their Foundation course onto their highly competitive three-year BA Professional Acting course to develop my skills as an actress and continue my journey as an advocate.
Some days it has been hard trying to relate to other people when my life experience is of trauma and appearance anxiety. But I have learned to accept my past and who I am and thankfully the course has allowed me to express my journey and build confidence.
The advice I would give to people going through their current diagnosis is, 'The cancer does not define you and you are not your cancer'. You are so much more and yes; it will get hard and there will be times when you might want to give up. But as long as your heart is still beating your willpower is still alive, even if it has dimmed a bit.
What helped me was envisioning the life I wanted. A life without hospitals, doctors, isolation and fear to a life of freedom, joy, nature and independence.
I had to change a lot of things about my mindset by reading self-help books and doing things that gave me happiness like hanging out with family or going to the cinemas because life is meant for living. We only have one, so make the most of it and reach out in gratitude.
Follow Crystal’s journey on her blog here