OPERATION
Operation plan
The next part of my journey, now that the doctors were confident that the chemo was a success, was my operation plan. I did not know what to expect going into this, but I knew it was going to be one of the hardest things I would ever have to experience in this lifetime. (mentally and physically).
My original surgeon suggested that if I went with him then he would ‘take apart my whole jaw’, and ‘take my nose off’ to stop cancer from spreading anywhere else in my body. (Even if it had reduced a lot in the space of 7 months).
When I first heard about this I felt two emotions, ‘happiness’ because he said that I could be treated so that this cancer would never come back again and ‘depression’ because he was so blunt about the amputation of my jaw and nose that I was in a state of shock.
Can you imagine having gone through the tough stages of chemotherapy just to be told that your journey would only get harder even if it’s for your own good? It isn’t a nice feeling.
So my stubborn personality started to take over and I began to think to myself, 'this surely can’t be the only way that they can take out the tumour so it will never come back' there must be another surgeon out there who could save my jaw and my nose so that in the future I could still look like myself.
That was when I met Professor Iain Hutchinson
Mr Kalavrezos and Ian hutchinson
That is when my mom and I discovered Professor Iain Hutchinson, who specialised in facial tumours and deformities who then introduced us to Mr Kalavrezos who is a cancer surgeon in the UK (London) whose speciality is treating osteosarcoma in the face.
His surgery plan was to take out what was left of the tumour, replace that with some bone and muscle from my shoulder and in the process keep part of my nose and upper jaw as it once was. When he first told me this I was so over the moon I finally saw the light at the end of the tunnel. This surgical plan had fewer casualties and as I also researched a patient whom he operated on in the past, I saw that he did an amazing job on her face and you could hardly tell there was anything wrong with her unless you looked closely. So ultimately, all these factors made it very easy for me to ask him to take my case and be my surgeon; it seemed like he had more day by day experiences with a person of my type of cancer and that made me feel safer.
I also like to point out that throughout all this time I've had osteosarcoma and I went to consultations, I have never sat in a waiting room with people who had visual differences until I went to London to Mr K practice. I can not describe how 'not alone' I now feel whenever I saw a person who was like me going through the same thing I was going through; It suddenly made me not feel alone anymore.
Operation
Unfortunately, due to some disagreements and a falling out with my past surgeon (and him taking forever to write a referral for me to have the operation in London), the tumour started to slowly grow back after a month of me finishing my chemotherapy. This then resulted in my new surgeon having to do an emergency operation where he had to take off a larger portion of my right cheek (where the tumour was), take off some skin off my right nostril, 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.
Looking back at my past life I realise how silly I was to care so much about my appearance. I always believed I wasn’t pretty or beautiful enough and I did everything I could to make me feel better about myself. But having osteosarcoma in my face has made me miss how I looked before.. and how silly I was to think different. But being a young woman in this generation of Facebook, Instagram and all forms of social media you are bound to feel a certain type of way about your appearance. I just wish I realised sooner rather than later.
After I had my operation, I had to learn how to walk again, how to move my right shoulder where the muscle was taken out, how to get used to eating out of a PEG tube ( which is a feeding tube attached to my stomach) and I had to go through the pain of taking the drain needle from my back (which is more painful when you can't scream cause you have a breathing tube in your throat) The toughest part for me, however, was having a breathing tube in my throat. I had never felt so miserable or suicidal then I did at that very moment. The breathing tube was inserted by my surgeon for me to breathe; my nose and mouth had to heal because it was very swollen inside of my face so to make breathing easier, I had to have that inserted into my throat. The only reason why it was such a nightmare to experience was that not only could I not speak or communicate to anyone (because of the tube) but when I had flem in my throat, they had to put this long tube deep into the hole in my throat and ask me to cough. This caused me so much discomfort in my chest and throat that I was having panic attacks by kicking my legs/arms around because I was in such discomfort which resulted in the nurses having to hold me down so I didn't cause them or myself any harm.
I wouldn't wish what I had to go through on anybody and I hope I never have to go through again.
Mr Kalavrezos - the surgeon who operated on my face and took a tumour out (basically an angel in disguise who saved my life <3 )
Professor Iain Hutchinson - He is a facial tumour/accident surgon whom my mom found on NetFlix (sorry, can't for the life of me remember what his movie is called lol) and we called him up not expecting him to take our case and luckily he did! and then he introduced me to Mr K . He is the kindest and nicest man I have the fortune of knowing and I owe him my life.
My first operation to take out the tumour.
:(
The second operation where I had to have skin/muscle from my back to put onto my cheek
After the operation
The third mini operation to thin down the swelling a tiny bit.
Once my two weeks were up the UCLH (where I had my operation) I was put up in this place called ‘Pauls House’ where patients who live either aboard or far away (who don’t have to stay in hospital but still need to have check-ups) stayed until they could go home. I was so thankful for ‘Paul’s house’ because it was a home away from home. It was basically a big house full of patients and their families who were still having treatment or operations and they had a teenage room full of movies, play stations, books (I love reading 😉) amongst other things as well.
It was the definition of 'home away from home'
I spent most of my time in the teenage room or in the garden which was a nice, peaceful and relaxing place to just meditate and relax, especially after all of the terrible things I went through at the hospital.
My mom and I had to stop in London for a month which was the longest month of my entire life. (but my mom wouldn’t let me stay in the house 247) she made me take a mini-tour of London looking at all the shops, walking around and even going to see a West End musical (Motown) – (which was incredible by the way); she believed that even though I looked different, I couldn't hide from the world forever, because it's not healthy for me mentally and so for her giving me that push and advice.
I'm thankful for that.
Looks/Stares
Before I had the operation I already had stares from the public because I had a massive tumour at the side of my face and people were wondering what happened to me. Not to mention I covered the right side of my face with my hair due to my own confidence issue (and at this present moment I still do.)
But after my operation, I started to realised that I didn’t care about the looks or the stares because I survived something that not everyone would have survived and that made me feel really positive and proud of myself. I have to admit though, I do have ups and downs where I care about what people think of my looks and I have social anxiety in certain situations like big crowds or giving people eye contact.
But gradually I get better because I know that this isn’t forever, and so I just take it in stride and continue living my life the best way that I can.
I have heard stories from various people whether it's to me directly or in the media that certain people in the public (if you look different) laugh or are disrespectful to them because of how they look. But thankfully, I am lucky enough in saying that I have never had that experience. The only negative I get is people staring at me or whispering amongst themselves but nothing beyond that. But I have to be honest in saying certain days I find myself waiting for that one person to say something about how I look (and I think that mostly stems from me being bullied in school) but then I stop myself and try not to be too negative and not anticipate it as much; I don't want to leave myself more stressed than I already am because I know it doesn't help me mentally so I try to be more positive.
What I look like after :)
My Future
I need to have a new upper jaw/teeth, right lip reconstructed, my right cheek flattened and my right nostril reconstructed as well. This is going to take a long time to achieve but I am positive that it going to be a lot easier than my previous operation.
I am also looking forward to becoming an advocate for people with facial differences, burns, cancer or etc to show them that they are not alone and that you can still have the confidence to do what you want to do even though you might not look the same as everyone else :)
In my personal life, I am looking forward to being more social, do more public activities and not hide away from the public as I have done in the past 😊