Anyone who has been diagnosed with any form of cancer will agree that it is a life-changing event. Here’s my story and the things I’ve learnt about cancer treatment.
Let me start by saying that I’ve always prided myself on my better-than-average health and generally sunny outlook on life. But the past 6 months have challenged everything I believed.
So how did a normally upbeat person whose job it is to inspire and guide others in their quest for health and fitness get to this point?
At the beginning of this year I noticed a small itchy lump under the skin on the tip of my left ear. At first I thought it was a mosquito bite, but when it didn’t go away after a few weeks I booked in to see my doc. Although there were none of the typical outward signs of skin cancer, my GP took a biopsy just to be sure and sent them off to the lab. I wasn’t prepared when she called me with the results a few days later: desmoplastic melanoma, stage 5. She booked me for an appointment with one of Perth’s leading plastic surgeons immediately.
At that appointment my surgeon advised me that desmoplastic melanoma is a rare form of melanoma that is characterised by spindle-shaped cells that can spread by burrowing into the neural sheath of surrounding nerves. The treatment was to excise the tumour with a 2cm perimeter to ensure that all of it was removed. As you can imagine, this is a substantial portion of the ear (see pic below)! Now I understood why my GP referred me to a plastic surgeon. This essentially meant that the outer pinna of my ear would be removed. I was in shock. My surgeon also advised that I needed some testing to ensure there was no other cancer in my body, including a PET-scan and lymphoscintogram. Now I was shit scared. Never in a million years did I ever think I would be told that I had cancer.
On 24th February, just two weeks after the initial diagnosis, I was admitted to Saint John of God Hospital for a PET-scan, lymphoscintogram and the dreaded surgery. The agonising wait for the results was tougher than the recovery from the surgery and the general anaesthetic! My hubby and I breathed a massive sigh of relief when the PET-scan, lymphoscintogram and pathology came back clear. My surgeon had successfully removed the tumour with good margins and three of my lymph nodes. The results were negative. However, there was a lingering uncertainty in the pathology about whether those spindle-shaped cells had infiltrated the surrounding nerves. My surgeon sought a second opinion from his peers on the WA Melanoma Advisory Service as to whether further preventative treatment was required, in the form of radiation therapy.
I was referred to a radiation oncologist at the Sir Charles Gairdner Cancer Centre to explore adjuvant therapy (secondary treatment post-surgery to help decrease the risk of the cancer recurring). His recommendation was to commence a 20-day schedule of targeted radiation therapy on my ear as soon as possible.
However, at my second appointment at the Cancer Centre I had an intuitive feeling that radiation treatment wasn’t for me.
That following week I read everything that I could possibly find about the treatment of desmoplastic melanoma and adjuvant radiation therapy plus anything else I could get my hands on relating to alternative methods for the treatment of cancer. The trouble with my particular skin cancer was that there was no definitive treatment. The research on those that had the adjuvant radiation therapy showed mixed results in preventing recurrence and those that did undergo radiation demonstrated a higher percentage of metastasis of cancer elsewhere in the body plus resulting skin complications from the treatment than those who didn’t receive radiation. The alternative presented to me by my Oncologist was to monitor my skin with 3-monthly check ups with a dermatologist and 6-monthly PET-scans to ensure there was no recurrence of the melanoma.
I opted for the far less invasive follow-ups. This was definitely the hardest decision I’ve been faced with and oh, what I would have done for a crystal ball at that time!
I’m a scientist by education, but I’m also a firm believer in the more esoteric powers of the mind, body and spirit to heal yourself. So throughout I have maintained my usual healthy eating habits and included more anti-inflammatory foods like turmeric, blueberries, lots more leafy greens, vitamin D and vitamin E. I also reduced my workout intensity and volume to minimise oxidative stress on my body but continued to exercise throughout (I only rested completely for 3 days after surgery). I eased back into training after surgery with walking and body-weight exercises (squats, push ups, sit ups etc) and gently ramped up the intensity of my CrossFit workouts. My focus is now on quality rather than quantity and I’ve put CrossFit competitions on hold for the time being. For the first time in my life I’ve also practiced regular meditation and found the Smiling Mind app and Hay House Meditations podcast immensely helpful in guiding my meditations. I’m also self-experimenting with intermittent fasting, breath and cold-water treatment to stimulate my immune system.
I learnt a tonne about the many alternative treatments of cancer through watching the enlightening documentary series The Truth About Cancer and this led me to Dr Manuela Malaguti-Boyle, based in the Gold Coast, who I consulted with for nutrition and supplement advice to help bolster my immune system post-surgery. I am also very fortunate to have a network of medical friends who were generous with their time, my never-ending questions and were happy to aid me in my research.
So, what are the 5 things that I’ve learnt about the treatment of cancer through this experience?
1. Your Doctor Works For You
Think of your doctors as the team of consultants that you’ve personally selected to work on your most important project: Your Life. Don’t be afraid to ask them every question you can think of no matter how silly you think it is, to challenge them, to ask for access to the research or evidence behind their recommendations and to give you an outline of all the options available. Take notes. And lots of them. The question I also asked all of my doctors was “if this was your wife/daughter, what would you recommend?”. If you’re not comfortable with the answers you are getting, seek out a second opinion, or even a different doctor.
Also take your partner, family member or a close friend with you to appointments so they can remember everything that has been discussed. The shock of a cancer diagnosis means that you won’t recall everything.
Bear in mind too that doctors are also heavily bound by the restrictions of their professional/governing bodies. And the strict protocols that must be followed in clinical trials (the basis for the majority of treatment recommendations by western doctors) means that research is published sometimes many years after the fact and is quite often superseded by new treatments that have not yet passed clinical trial status. Therefore, ask your doctor about any new research that is currently being trialled and what other non-traditional treatments are available. Be open to treatments beyond or in conjunction with the realm of western medicine.
Find the solution and team that fits your beliefs. If you are 100% on board with the treatment plan, I believe you are in a much better mental position to positively impact your healing.
2. Take Your Time
There is a sense of urgency when you are dealt the cancer card and I certainly felt the pressure to make decisions quickly and to schedule testing, surgery and treatment immediately. The reality is that unless the cancer is life-debilitating or life-threatening, then taking 2-3 days to do further research is not going to make a big difference. After my immediate diagnosis I also took some time to “unplug” and spend time with my husband. Sometimes you just need to put life on hold!
3. Listen to Your Intuition
I believe that we all possess a deep gut intuition when faced with major life decisions. However, most of us have trained ourselves to overrule this feeling with rational thought and reasoning. After my visit to the Cancer Centre I had a deep feeling that I shouldn’t be undergoing radiation treatment. It was so strong that I couldn’t ignore it and it drove me to do further research. I’m incredibly thankful that I did.
4. Talk and Ask for Support
Talk with as many people as you can. Just about everyone you speak with has had some brush with cancer nowadays, and the more you talk, the more you discover. I learnt that it was OK to be vulnerable, to let people know that I was scared and to let down the pretences that I “had my shit together”. Through letting down the walls I received an immense amount of support from family, friends and contacts. The love and power of collective positive thought that I experienced throughout my diagnosis, surgery and recovery was critical to my healing process. I can’t imagine having to go through that ordeal on my own.
5. Don’t Put Life on Hold
I now know that I had become very comfortable and complacent with life in the past couple of years. Afterall, I live a pretty blessed life! However, this brush with cancer has served as a reminder to me that you never know what’s around the corner. So I’m no longer putting off ‘til tomorrow what can be done today and am putting my dreams and goals into action!
It’s been a year of reflection, questioning what I value the most, and a renewed appreciation for my health. I have much to be thankful for from the experiences of the past 6 months and am now focused on being healthier, stronger, fitter and happier than ever before. I also know now that I AM pursuing my life’s true purpose: to inspire others to prioritise their health and fitness.
I’m looking forward to exciting times ahead… and a long, energetic life!
Yours in good health,
Co-Founder, Highway to Health & Cooee CrossFit
21 June 2016
If you’ve recently been diagnosed with cancer, I hope my story helps you in some way. And if you know someone who has recently been diagnosed, please share my story with them too.
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