December 12th, 2017
| Survivor: Ocular Melanoma
Cancer is an absolute a jerk! As a young cancer fighter, I am one of a small minority that have had to battle it out with this bastard during a time when life is already changing so much. One thing that makes this tough time a lot more bearable is having a community of other young patients who get it. They get that this time in our life isn’t all sunshine and rainbows, they get that treatment can be tough and they get the fear of facing the unknown path we have ahead of us! We create some incredible bonds with the beautiful people we are sharing our cancer path with. Even though we are all be going through similar things, due to the unpredictable nature of cancer,each and every one of our bodies responds differently.
I remember the first time I felt guilty was when I was in a room with a group of Youth Cancer patients who were all talking about their experiences with chemo, radiation and steroids. At this point my journey had consisted of multiple surgeries including losing my eye, but hearing what these other incredibly brave patients had gone through and how months and even years later their bodies were still battling the side effects, I felt a wave of guilt. It felt like I had no right to complain about the surgeries that I had been through because I had recovered and slipped back into normality so quickly. I wasn’t battling fatigue the way they were, I wasn’t trying to rebuild the muscle mass that the steroids had stripped away, I was lucky!
The next time I truly experienced guilt, I was overwhelmed with it, a young family friend had been diagnosed with cancer 6 months before I was. At the time I was counted as being in remission, he was no longer responding to his treatment. I remember seeing him and his family grieve when he was told he was terminal and my heart breaking because I was doing well after surgery. I remember attending his funeral surrounded by people I had spent time with in my teens and having them ask how I was doing with my cancer, and every time I answered I felt more guilty for being there and being able to say my surgery had successfully put me into remission. I remember looking around at all the faces I’d once known to be bright and filled with joy all riddled with tears and despair and thinking why did it have to be him. I remember looking at all the beautiful photos that were in the room and being reminded of all the beautiful memories I had of him and the memories his family and his friends had and realising he was gone, that our memories were all we had left.
Five days after the funeral I experienced a new kind of guilt. I had a seizure and was told I had late stage Melanoma. I was so concerned with how everyone else would take it, I remember seeing my mum buckle at the knees as the doctor broke the news and not knowing whether she would ever be able to stand up. I remember not being concerned about how I would feel, surprisingly I felt at peace which in my life I take as a sign that things will work out, but I felt incredible guilt for the stress and anxiety my friends and family were going to endure as I fought for my life. I remember feeling so guilty when the doctors told me that we were going to have to self-fund my treatment that I told my parents I wouldn’t do it because I couldn’t bear the thought of them taking on a $100k debt for a treatment that may or may not work.
My most recent experience with guilt was when I started dating my boyfriend in June. I really struggled to let someone new into my life because, while I’m stable, I am still living scan-to-scan which at times can be incredibly stressful! I had so many mental battles over how open I needed to be, how much I needed to share and making sure that he came into my life with both eyes open as to what he was getting into. During the first 6 weeks, as I was falling in love, I began to feel selfish and guilty for wanting to bring someone into my crazy life. I remember tossing and turning as I stressed about whether I had been open enough, whether he understood that a life with me meant a life with a lot of uncertainty. That maybe one day all of it may get too much and that I was expecting too much of him to stay. We had to talk about the fact that I was unable to have my own children, and I was mortified. I couldn’t allow myself to relax until I knew I had touched every base and that he understood where I was with my health. I felt guilty for falling in love.
Even as I write this, I am in tears as that brutal and overwhelming feeling of gratitude and guilt fills my heart. I know sometimes we ask "why me" when we are going through the hard times, but the harder question when we are getting through it and responding to treatment can be. "why was I lucky enough to survive?"
I am so grateful to be here and to be living my life but escaping cancer-related guilt is always hard! We are lucky to be alive but don’t let that guilt stop you from living and never forget that you will never be a burden to the people that love you.
If you are seeking counselling and financial support, we encourage you to check out Redkite's services at Redkite.org.au.
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Jess is an eyepatch wearing 23 year old from the Mornington Peninsula. At the age of 21, she was diagnosed with a very rare eye cancer, Conjunctival Melanoma (this is on the white part of your eye). Her treatment for the first eight months was localised surgeries and observation. Unfortunately, just after her 22nd birthday, she was told that it had spread into her lower eyelid and the only option she had was drastic surgery to remove her eye and eyelid and close over her eye socket for good. Last September Jess received news last that she is now fighting brain metastases. Despite experiencing some nasty side effects from her treatment, Jess is remaining positive, especially so as recent scans revealed no significant growth or change in the tumours.