Help Simone spend more time with her Family and Friends

I have a wonderful group of friends who have “coerced/pushed” me to start a ‘Give a little’ page. This is something that I struggle with as I don’t like to ask for anything! But it has become very apparent that there are some people who would love to do something for us but don’t know what they can do. We have already received such loving support from friends and family, it has been overwhelming.

A friend said to me today “The greatest gift that I can give is to be open to people wanting to help or give something to me” I guess this is true and has helped me accept that a Givealittle page is a fantastic opportunity to help us raise some funds to be able to undergo valuable treatment that I need.

Marty and I have three children – Callum (18) Georgia (18) and Amelia (15). Life was crazily busy and was running at a horrendous pace when I was diagnosed 18 months ago with Advanced Breast Cancer. After undergoing 2 surgeries immediately -mastectomy and a rod to help stabilise my arm (where the main secondary tumour was found), I have undergone continued radiation and hormonal therapy which has helped slow the disease. The secondary disease in my bones is classed as “stable” – for the moment. But the cancer remains active in my circulation. At this stage I have no cancer (yay!) in any of my organs which is ultimately what I need to prevent from happening.

During the last 18 months, I have learnt a lot about the management of Cancer in New Zealand and have discovered that we are very limited in testing and appropriate management of cancer. Basically everyone is treated as a “breast cancer patient” or a “bowel cancer patient” and you are not managed as an individual. Management appears to be very generic and limited within our Health System.

I have discovered (through Blood tests analysed in Germany) that my blood is carrying cancer cells that are 95% Herceptin positive. In NZ, if your tumour (via biopsy) is Herceptin positive, I would be eligible for funding for the Herceptin treatment (approx. 75K for 1 years treatment!) - BUT because I have looked outside the square and discovered that the Herceptin +ve cells are in my blood (95%!) I am ineligible for treatment. This information indicates that the cancer has changed/mutated to a more aggressive type of cancer - yet even with the clinical information I have, I am ineligible for funding to treat my cancer. As a young person with 3 teenage children, this is distressing to think that I cannot be managed proactively to prolong my life as long as able. I really do interpret the management I receive as ‘the ambulance at the bottom of the hill’ who will treat symptoms rather than being Proactive, to look at results, and act accordingly. They clearly are held back by drug company criteria, and health system restrictions, so is often not their fault.

Research and treatments that I have read about in Germany, America and even China show how advanced they are and how they treat each Cancer patient with “TARGETTED THERAPY”. This means they run extremely comprehensive personal blood tests and your treatment plan is ideal and specific to “you as an individual” – something we don’t do here in NZ yet. I have started some of these treatments already here in NZ (due to researching and not as a result of being informed by my Oncology team!) and have imported products that work directly on “my cancer”. I have 3 things that are important to me – one is to try and get Herceptin funded (otherwise I will have to fund myself – I know this will kill my cancer and genuinely give me a better chance at living longer), second is to attend the Renkang Hospital in China and undertake SPDT therapy (Sonophotodynamic Therapy) and specific “TARGETTED THERAPY” to try and reduce the active cancer in my blood and then possibly attend the Burzynski Clinic to look at the bigger picture with long term outcomes and to potentially put me into remission. Unfortunately to undertake all of these options is beyond our reach financially. At this stage it is costing us approximately $550 per week for treatment and the supplements I need. This is difficult as I have not been working since my diagnosis. This gives an idea of the direction I need to follow and what I actually achieve will be completely dependent on funding.

Ultimately my goal is to be here for more time with my gorgeous family and my fabulous friends! I continue to remain positive and fight this chronic disease as long as able! I just know that there is so more for me to help me ensure my life is as long and as fulfilling as it is meant to be. With your help, I know I can achieve this extended life.

I thank you from the bottom of my heart for your support and want you to know how much this means to me and my family. Love to you all xox