I kicked the big C in butt – now what?

I have always been a super healthy person who was vigilant about diet, exercise and always wearing sunscreen. My husband loves to tell the story of when we were on schoolies and our friends were all out sunbaking on a boat, and he was stuck inside with me because I didn’t want to get burnt. I am a very pale skinned redhead (not that you would know as I swear by fake tans!) so have always tried to minimise my sun exposure. When I was just 27, I noticed a freckle that was dark and slightly raised on my left thigh that I just didn’t think was there before. It was much smaller than some of my other, more older moles but I thought I’d better get I checkout when just to be safe. It was good timing as I was seeing my GP for some travel vaccinations anyway. The biopsy confirmed it was melanoma. I couldn’t believe it, I was always so careful. Thankfully it was stage I – meaning it hasn’t spread to surrounding tissue. I had wide excision to remove it and moved on.

Fast forward to my 33rd birthday and I noticed a lump in my left groin. It must have been smaller than a pea. Being the vigilant good girl I was, I visited by GP that day. The ultrasound results were ‘suspicious’ (love it when they use that word) and biopsy later confirm it was melanoma. It had come back 6 years later and unfortunately spread to my lymph nodes which is the small lump I was feeling.

The next few days and weeks were a whirlwind. You are thrust into world you have previously known very little about and are forced to become and expert very quickly. Within 24 hours, I was booked in for PET, CT, brain MRI scans, blood tests, core biopsy (ouch!), just to name a few. The time then waiting to know just how advanced your cancer is – like is it in my blood and brain is torture. I was diagnosed with Stage III melanoma – it was in my lymph, but not my blood. I can honestly say I felt a huge wave of relief even though it was still terrible news. I was so fortunate to have caught it at the stage I did and to be in the best care possible with my medical team. Within the first few days after finding the lump, I had to decide on treatment options. Treatment for advanced melanoma is still very new. As I learnt, melanoma doesn’t respond to traditional chemotherapy. My oncologist even joked this is the most unsexy cancer to get. But I was lucky enough to meet the requirements for a clinical trial of immunotherapy, followed by surgery and targeted therapy.

Immunotherapy is a more recent cancer treatment where they are essentially trying to boost your immune system to learn how to fight the cancer cells. It is administered a similar way to traditional chemo – intravenously at an infusion centre. When they first said infusion centre, I honestly couldn’t help but think it sounded like a cocktail! Arriving at the centre was probably one of the most overwhelming and humbling moments of my life. It felt surreal, like I was in a movie. Yet I was grateful that perhaps my prognosis may have been not as bad as others sitting right next to me. The unknown is hard, will the treatment work, what horrible side effects will I get, and what happens if it doesn’t work. Once I was hooked up, I felt more certain. More confident that it would do what it needed to. At one stage Elton John’s “I’m still standing” was playing and to this day I can’t help but smile and think “I sure am”.

My response to the immunotherapy was poor but after surgery, the analysis of the tumour showed I had a genetic BRAF mutation. Whilst highly aggressive, my oncologist was pleased with this news (which really confused me) but she could tailor my treatment regime accordingly. I then completed 12 months of targeted therapy to turn this gene off. I underwent two surgeries and had my lymph nodes removed in my left groin. I had two drains in my leg for 6 weeks until my body learnt how to redirect the lymph. Unfortunately in 50% of cases, the body doesn’t learn quite how to do this and I was one of them. I have to live with lymphedema for the rest of my life as there is currently no cure. Lymph fluid accumulates in my leg leading to significant swelling. I manage this the best I can and have come to think of myself as a lymphadiva - check out my articles on lymphedema for more details on this. 

The great news for me is that I responded to my 18 months of treatment. I have been cancer free for 2 years now and passed the biggest risk period for a recurrence. There is still a chance it comes back, the 5 years survival rate is only 70% for stage III melanoma and I will have monitoring scans and tests for 10 years. And while this is the best news I could have hoped for, once my treatment was completed, I was left with a sense of ‘what now’. I didn’t really have a new lease on life, I didn’t feel a need to quit work or change jobs and I didn’t have any greater focus on mortality and living each day as it was my last. Now maybe this is because I had no regrets, I was proud of how I had lived my live up until that point and wouldn’t have changed anything. But I couldn’t help but think something was wrong with me, that I wasn’t changing my life in any way after being through this huge ordeal.

What I do think has changed it not sweating the small stuff quite as much. I think I also probably care less about what others think of my choices and I am bolder in who I am. We don’t seem to talk about what happens after cancer very much. There is so much support when you are going through it, medical treatment and the love and support from family and friends. But even after a few months, it becomes normalised, the shock passes, people adapt and it’s no longer such a big deal to them. And then the after effects of cancer set in, which for so many is chronic conditions that they have to live with the rest of their lives. You are not alone if you feel this way. It’s tough. It’s tough dealing with the fact your body is likely not as it was before you went through this. It might be numbness, nerve damage, pain, scars, swelling, reduced immunity – the list goes on. The best thing I did was just accept what is, accept the limitations I now have and adapt my life. Life with limitations is still life., what you control is how you response and react to it. It’s okay if you haven’t have a life changing epiphany, this might just mean you were content with your life before cancer. Be proud of that. Just keep being the best version of you that you can be every day, and that includes being a cancer survivor.