1. What impact has NETs had on your life?
NETS has hugely impacted my life…going from a full and hectic life, of designing objects and exhibiting our art installation works and jewellery, everything had to stop so I could just focus one day at a time.
I was incredibly fortunate that my life partner, Tony, was somehow able to not only look after me full-time but also to continue to run our creative side of things at the same time…somehow a superhuman effort on his part.
I guess this just allows me to focus entirely on fighting the NETS both physically and mentally, as I was determined that I would not allow it to win.
I am one of the unbelievably fortunate ones to overcome NETS as I have currently been cleared of any detectable cancer in my body.
Even now, after 4 months after I had finished my last radio therapy, I am still getting some fatigue, and the road back to health has been a long and annoying one, but life goes on, and I am nearly back to my former self.
For here I am determined to become even more fit and healthy if the NETS does return, and have a strategic mental and physical plan to fight it if it happens.
The way that I look at it, I have had a deadly disease, and I am lucky enough to come out the other side, but life is always too short, so get on and enjoy and celebrate every day.
2. What has been most helpful to you in your NET experience?
I had an very large and aggressive NETS, and had decided at the outset of diagnosis that I wanted and needed the most aggressive treatment that could be directed at this disease.
I took ownership of the NETS and fought hard to ensure that I took the incredibly strong treatments (which included 6 weeks very high level radio therapy and chemo).
To ensure I was doing everything that I could possibly do for myself, Tony made sure that I was eating really healthy, with lots of protein and high levels of vegetables, as well as continuing to walk for exercise as much as possible. Getting into nature is always an uplifting and positive influence for me, so walking in the sunshine was important.
I was born an eternal optimist, and honestly it totally helps to retain a healthy mind, for a healthy body. Why not look at a positive approach to each day, and maintain a mindset that you can overcome anything….it can only add to your mental and physical strength.
I was very lucky with my team of people that were treating me, and this allowed me to have the confidence that I could over come this.
Of course, I had sought out the best possible Ongology team of Professor Epstein, at The Kinghorn, St Vincents, Sydney and experienced Radio Therapy team, of Dr Annie Ho, both of which had experience and knowledge in the treatment of NETS. My NETS was so large and aggressive that it was off any sort of grading scale, so my treatment was quite aggressive, but that is what I wanted and needed. Also, I had an incredible backup of The KInghorn with a nursing co-ordinator, all of which allowed me to have huge confidence and support in my fight against this, with even the small things being dealt with fast and efficiently.
Also spending nearly a month in hospital at St Vincents, with the incredibly professional doctors and nurses, again allowed me to have confidence in the outcomes.
Also, I leant early on that it was my body and that I needed to take ownership of the NETS and the treatments, so both myself and Tony asked so many questions, so we had a clear understanding of what I was getting and the outcome. Information is important to be able to make an objective decision on your treatment.
At one point I was very unwell with massive infections from my body trying to fight the effects of the radio therapy, and they wanted to stop the treatment. I refused this as I knew that I could take some more treatment, so after having another three treatments, I knew I had had enough, and had to come back to the last three treatments after I was recovered from the infections…but I did finish the treatment, and that was important to me.
So, the elements that have helped fight the NETS have been Professional Expertise of my Team, First class facilities while being treated, Information, Objectivity, Personal Positivity & Determination
3. What advice would you give to a newly diagnosed patient?
Firstly take ownership of the NETS…it is your body and it is time to mentally and physically fight this disease.
Get yourself a strong and innovative team of medical professionals that know this disease, and can offer options that you are going to get the best outcomes from.
Ask as many questions as you like of your medical team and express the way that you want to fight the disease.
Eat really well, with lots of protein and health veggies, nuts, grains etc, to give your body the fuel that it needs to do all you can to contribute to the fight going on in your body. Speak to a nutritionist if you need any advice.
Exercise or stretch a little bit to keep your body active.
Be positive every day…you don’t gain anything by being negative about any possible outcomes….the brain is a very powerful thing and I believe positive thought can contribute towards wellbeing, so why not give it a go!