My doctor is a firm believer in mammograms at your 40th birthday, just to give you a benchmark she said – so I duly complied and all was fine. Six months later my breast changed shape, no lump and a marginal call; but something made me go back to my doctor. Five days later, instead of jumping on a flight to Greece for a catch-up with family I found myself in hospital having a mastectomy. That was two years ago now but I remember it as clear as anything – that was definitely “not a good week” for either myself or my family.
The diagnosis was a nightmare, the follow-up worse, as each piece of information overwhelmed me and my long-term prognosis got ever worse. The last piece of information was that I was Her2 positive. I had done extensive research at that stage and knew that was not good – so it was devastating. I just sat there dumbfounded. My specialists told me that if I did nothing I had a 40% chance of survival, if I had chemotherapy and radiotherapy that increased to 60%, and great news, there was now a new drug called Herceptin and a 12 month course would increase the stakes to 80% chance of survival.
The bad news however (yes, more bad news) was that this drug was not funded in New Zealand and if I wanted it I would have to find $75,000 to get it privately. At that stage I guess I didn’t really think about it too much, I just knew that with those odds I had to get Herceptin. I often jest at the use of words such as odds and chance but that is exactly how I have felt since this disease hit; my life is now a lottery.
Starting chemotherapy was the scariest day ever – 6 hours every 3 weeks for 6 months. Following that came 6 weeks of radiotherapy. I started Herceptin half way through my chemo regime and had to travel every 3 weeks to Palmerston North to get it administered, as there are no private clinics in Wellington. My treatment took 18 months to complete and it was a very long 18 months. Still it is done now, and things are finally starting to seem much more “normal”; apart from the odd paranoid episode that is!
I feel that I am one of the lucky ones, I was able to find the money for Herceptin but there are many other women out there who can’t and that is wrong. I question Pharmac’s decision not to fund 12 months of Herceptin and with 7 other women, sought a Judicial Review of that decision. I am no scientist (well, actually I am) but at the lowest level, I simply couldn’t understand how NZ could study the same data and reach a different decision than 33 other OECD countries.
It was also a decision that went against the recommendation of every specialist I encountered during my treatment. People have been amazing giving up their time to help us fundraise for the legal fees for this action which has gone someway to restoring my faith in New Zealand. Whilst things have not yet changed as a result of that action I will not give up trying. Can I be accused of being emotive? Maybe – but I think everyone deserves a fair chance at life.