Matilda (Tilly)’s Story

In 2014, I was at what most people would say is the ‘peak’ of their teenage years. At 18 years of age, living life to the fullest. Enjoying every moment until a little thing called cancer got in the way. I kept noticing this small lump on my left ring finger and it bugged me a bit because it was getting in the way sometimes when I wore rings and such, but as time went on I thought to myself this little lump is not as little as it used to be. I told mum that we had to go and see the GP about it because I was very curious to find out what this thing on my finger was.

My GP referred me to a plastic surgeon to have the lump removed because we all thought it was just a cyst. I had several scans and finally my surgeon said that he would need to biopsy the lump otherwise there was no way of knowing what it was. During our follow up appointment for my post- biopsy results, my surgeon explained that he only removed about 30% as it seemed to be attached to the nerve which seemed to be quite strange for a benign tumour to do. I quite vividly remember the day when I was told the results of that biopsy which was 22 October 2014. It was not a happy day for me or mum either. When my surgeon told me that the lump was an epithelioid sarcoma (which is a rare, malignant, slow-growing but aggressive tumour) it just seemed so strange. I thought he was talking about someone else? Like he had got the wrong person. But my emotions really got the better of me after the appointment and I really lost it in the car on the way home. Just coming to terms with the fact that my finger was going to be gone in a matter of days. Coming home to tell dad that the only option for this type of cancer was amputation. I was not going to have any chemo or radiotherapy – I just had to have my finger removed?!?!?!?!?!?!

I decided in amongst all of this shock that I would need to have a positive outlook, and keep a sense of humour, otherwise I would never cope. Mum and I kicked things off by having a ‘farewell to my finger’ with a party with all things finger related eg, scotch fingers, chicken fingers, lamington fingers, sponge fingers and cheezels for our fingers!

I decided immediately after I knew I was going to have my finger amputated that I wanted to have a prosthetic. I didn’t want to live with a prominent gap (to me it looks that way) on my hand for the rest of my life!!! I thought it was going to be pretty easy to just get an appointment and have a prosthetic finger made and our health fund would cover it. Unfortunately they didn’t and nor did the state government agency set up to help people who have had amputations… they don’t do ‘fingers’ apparently, even though I needed a ‘partial hand’ prosthesis. So my quest for a new finger is still very much alive!

After my amputation, the recovery was pretty tough. I spent two weeks on the couch feeling sad, bored and alone with no-one to talk to about what had happened to me. My mum made an appointment with a counsellor at CanTeen and I’m so glad she did – I have met a whole new circle of friends who live with cancer and recently returned from a fantastic national leadership program in Sydney.

When I was recovering, I also discovered the Sock it to Sarcoma organisation. I remember going to our first Sock it to Sarcoma outing at the Fringe Festival where we met the lovely Mandy and Imogen Basson and some other wonderful people including Sharon Jarvis who has been such an inspiration to me and so supportive! We saw Luke Ryan, the comedian and sarcoma survivor – he was amazing and another great inspiration to stay positive and look on the bright side of life, even when it doesn’t seem so bright.
One of the highlights for 2015 was that my dad did the Ride to Conquer Cancer as part of the Sock it to Sarcoma team. The whole team raised $$$ which has been donated to further sarcoma research. All our friends and family were so generous with their donations, I can’t thank them enough.

I can’t quite believe what has happened in my life since the day I was diagnosed on 22 October 2014. It has been such a challenge for me but I have met so many incredibly inspirational people through the Sock it to Sarcoma family (Jane, Elaine, Louise, Lyn, Michelle, Pip, Rachel, Simon – thank you all so much for your conversations and support). I would even go so far as to say that this experience has given my life more direction and purpose, especially where my career is concerned. I am now more than ever determined to pursue studies and work in the science sector.

As at December 2015, my PET CT scans were clear… and that’s the way they are going to stay!

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