Tell us a little about yourself
I am a born and bred 55 year old Tasmanian. I’ve been married for 35 years with 2 adult children – my son is an ICU nurse and my daughter a beautician.
I run an electrical heating and cooling company in Tasmania for a mainland based company for the last 17 years which I started up. Working on my own I have had to be very motivated which I have found has helped me to cope with the last 6 months to push and drive myself.
I have always played sport and was the football and cricket captain for 4 years throughout my late teenage years into my early 20’s.
I developed insulin dependent diabetes in 1999 and was told by the Doctor that I needed to walk and exercise. I took up golf which has helped control my sugar levels and I have found a new circle of friends who have been absolutely amazing since my diagnosis in April 2021. I now love the game which has helped me to cope with the last 6 months.
When and how did you first find out you had melanoma?
In 2011 my world was about to change, I had a large freckle on the top left hand side of my back for most of my life which had changed and had become black, ulcerated, rough edges and very itchy which required my golf club to reach it to scratch the itch away.
My wife nagged at me that I needed to get it looked at, I continued to ignore her until one day my best friend asked us to a BBQ and having lost his sister to melanoma 20 years earlier and his wife being a nurse I decided to ask her to take a look at my back.
To her horror she ordered me to see about it on the following Monday without fail. I rang the local Skin Cancer Dr to make an appointment and the reply came back we can see you in 6 weeks. I pleaded with the receptionist that this was urgent, so she found me a spot at 5pm that day.
I will never forget when the Dr walked in, took one look at the dark black ulcerated mole and she said, “Oh my goodness, do you have any idea how bad this is? This is the worst mole I have ever seen”. She punched biopsied it and a few days later it was confirmed 1.8mm melanoma. This led to 5 operations and 3 trips to The Alfred Melanoma Clinic in Melbourne.
For the next 10 years I had skin checks, 3 monthly for the first few years and then 6 monthly as nothing else appeared. I wore sun cream head to toe all year round and avoided being burnt in the hot sun especially playing golf and I thought I was in the clear until April 2021. 10 years later my life was about to take the biggest turn I could ever imagine.
My best friend had died of bowel cancer 2 years earlier and being a typical male the bowel kit test was still in my bed side drawer, so I decided now was the time I needed to do it. My GP rang me in January 2021 and said your bowel kit test has come back with a trace of blood and we need to organise a colonoscopy. I also, mentioned to her that I was getting a bit of reflux just at night when I was lying down, so she organised with the specialist to have tests done to investigate both problems. The results found nothing found but 2 polyps which turned out to be nothing.
The specialist suggested doing a CT scan of my chest as I had melanoma 10 years earlier. This is when the nightmare really started, a tumour the size off my fist found on my lung and was inoperable due to where it was situated close to the heart, then the PET scan that was urgently ordered found a 5.5cm round diameter tumour in my right temporal lobe in my brain.
Diagnosis – Stage 4 metastatic melanoma spread to the lung and brain.
Tell us about your treatment
I had brain surgery on the 26 of April 2021 which took 5 hours for surgeons to remove the tumour. I then commenced Immunotherapy in early June with 5 double doses of Ipi/Nivo to be given every 3 weeks.
After 2 treatments major side effects started to kick in with colitis, rashes, diarrhea and liver inflammation. I had just played 4 straight days of golf and walked into the oncologist and she asked how I was feeling? I said a million bucks and she said well unfortunately I need to put you into hospital as your liver is badly inflamed and this could potentially be fatal. I stayed 4 nights in hospital. The oncologist wanted a liver biopsy to confirm what was causing the inflammation which turned out to be from the immunotherapy.
Next, I had a PET and MRI scan and my heart was beating fast waiting for the results. After the results were finally back the MRI showed the head mass completely gone and the lung mass had been nearly obliterated with just a tiny piece left after being the size of my fist. I was in complete shock as my diagnosis in April was Stage 4 and looking grim.
No more immunotherapy is required as I have had a complete response already. I just have to have 3 monthly PET and MRI scans and if the melanoma returns my oncologist will restart me back on the immunotherapy.
In September the pigment in my skin on the back off my hands was becoming significant and I showed my oncologist who explained it is another side effect called Vitiligo.
Interestingly, the side effects can be a good sign.
What challenges did you and your family and/or friends face after your diagnosis?
I have kept a “never say die” attitude, except for the first 2 weeks after the brain surgery. I went home after just 2 days in hospital, which stunned the surgeon who rang me to see where I was! I said the other Dr tested me and said I was fine to go home and I took just 2 panadol a day for a week which also stunned him.
I was back playing golf 14 days after the brain surgery, although not very well as I had lost so much weight and strength. I then started pumping weights and stacking 4 tonnes of firewood away in readiness for the cold winter ahead.
The fatigue was the hardest part in the first 2 weeks, I have never experienced anything like it. My son being an ICU nurse tried to explain I needed to do some light exercises which I couldn’t get my head around. Then one day he came home from a hard day in ICU and I looked up at him and saw fear in his eyes and that was the catalyst for me to get my wife to drop me to my golf club and I somehow pushed myself to walk 5kms which turned out to be the hardest walk I have ever done.
The next day the fatigue completely left my body and my son was right.
Everything changed from that day. I started to eat again after losing 14kgs the weight started to return, my energy levels started to increase which was helped by the prednisolone that I was on every day.
The prednisolone has created a few small issues with sleep issues waking at 4am even after taking a sleeping tablet. Short temper which something I have never had was becoming an issue. I have had to really work hard on being very mindful of what I was saying and to whom.
Not being able to drive for 90 days after a brain operation was the hardest situation, to be stuck at home and rely on family and friends to pick me up and drive me around to just get out of the house was difficult.
Work was difficult as I work on my own and my boss in Melbourne was great telling me I had 19 weeks sick leave, but I couldn’t let it go, the business that I had built for 17 years was potentially going to be ruined.
So, I asked my boss to employ my nephew part time to get my stock out to the customers which he agreed was a great idea. Given my nephew is 3 years into an apprentice chef he was fantastic and stood up, we managed to sell everything much to my relief …. This helped to keep me focused and my mind active throughout those dark days.
Tell us about your involvement with MPA
When I was first diagnosed, I was looking for a web page that had answers to my questions and stumbled across MPA and it saved me.
From very early on I asked many questions and found a couple of patients in exactly the same situation as me and I followed their journey and listened to any answers they offered.
Over the last 8 weeks I have wanted to return that favour and any new patients I try to encourage where I think I can make a difference.
My journey is now to inspire, and I hope I can help make a difference to others in the same situation into the future.
How has melanoma cancer affected your outlook on life?
It has not affected my outlook and I refuse to let that happen, yes, I have had some scary moments and cried 3 times.
To me this is a face off; me vs melanoma, and I hate losing, so its game on! So far, I am slightly ahead and I know this fight is far from over, but I am ready for what else may be thrown at me.
Do you have a motto or personal mantra?
I have learnt a lot in such a short 6 months… my motto is “I can control my emotions, but I can’t control outcomes”.
I have implanted that thought into my brain and it has really helped not to be scared and worry about what if’s?
Outcomes will be outcomes and me worrying about outcomes is not going to change what may or may not happen.
My son thinks I am crazy, but my other quote is I am the “medical miracle marvel man”.
I’m happiest when….
With my beautiful family and watching my kids grow into these wonderful adults that they are now.
I am very happy when I am on a golf course and just focus away from cancer for a few hours and not think about it.