Thinking about your experience with sarcoma, what has been a significant moment or a particular source of strength that has helped you persevere through challenges?
A significant moment for me came not long after my GIST diagnosis in February 2022. A large part of the struggle around dealing with my particular type of Sarcoma is the adverse effects from the medication. After talking this through with the oncology team and other GIST survivors I realised for the most part that there are ways of coping with these that help you to continue to live your life as normally as possible. It was up to me to take personal responsibility and be aware of what my body was telling me. Things like diet, exercise, good sleep habits and a positive attitude are key ingredients to living your best life.
If you could share one piece of advice or a message of hope with someone who has just been diagnosed with sarcoma, what would it be?
Knowledge and a positive attitude combined with a realistic mindset. The harsh realities of living with Cancer are that one day you may be told that your disease has progressed. Learn as much about your disease and what your other options may be and if it happens you are then better placed to understand and move forward to the next phase. We also live in an age where there are new treatments coming on line all the time. From that perspective it is important to not let any knock backs get you down for too long as there may be a solution for you just around the corner. I say not too long because I also believe it is okay to feel bad about your situation. It’s normal and it helps to have a good sulk every now and then but then shake it off and get on with your day
Beyond medical treatments, what have you found most valuable in maintaining your well-being and resilience throughout your journey?
Being open and honest about your situation. This has been the cornerstone of my ability to deal with my Cancer. By being open and honest with my family and friends I have created a support network of many people who are always there beside me every step of the way. This has created an environment where at social gatherings or just a quick catch up with a mate, it’s not the elephant in the room that no one wants to talk about or even acknowledge. As I now enter into the final stages, I am finding that my choice to be so open from the beginning was not only the right choice for me but also for my close friends and family. We are all there for each other now and it eases my mind to know that not only do I have them but that they also have each other.
In what ways has your experience with sarcoma, despite its difficulties, reshaped your outlook on life, and what positive lessons or perspectives have you gained?
In many ways it has made me a better person. I am now more willing to engage with someone else who may need talk about their issues because I have learnt to listen and hear what they are telling me without judgement. I also don’t get so caught up in small day to day problems and focus more on what is really important too me. I enjoy the good things and as much as possible avoid things that may bring negativity into my life. Remember that the Cancer does not define you or own you.
Any advice for those who are worried they may have symptoms of sarcoma?
Early detection is key to any cancer diagnosis. If I have one regret it’s that I ignored what were now obvious signs. I don’t beat myself up over it though because at the time I didn’t know what I know now. However I do encourage everyone I know to have regular health checks and if something doesn’t feel right it’s usually because it isn’t. Learn to listen to your body when it’s sending you signs. There is so much information available from various mediums these days but you must take care in deciphering fact from fiction. This is why the establishment of the Sarcoma Foundation is so important for us in New Zealand. Much of the information available centres around treatment options and facilities from other countries. SFNZ will be able to help you establish what your options are here in NZ and where you should go to seek treatment or advice. It is also my hope that over time they will become an advocate for Sarcoma patients in regard to funding and access to medical trials.