My name is Sarah.
I'm lots of things: a daughter, sister, girlfriend, friend... i'm a vintage clothing fiend, lover of nuttella out of the jar and fan of pilates. I've studied, traveled, worked, had my heart broken and fallen in love. This all sounds pretty familiar and ordinary and wish that I could say thats all I am. But from March 2009 onwards i've also been someone who has been living with Hodgkin Lymphoma.
When I was first diagnosed everyone told me "don't worry this is the best cancer to have". In some respects they were right as there is an 85% survival rate for people diagnosed with this cancer and a large proportion of those people only have to undergo relatively well tolerated chemotherapy and radiotherapy usually lasting around 6 months. Unfortunately in my case things have not gone to plan (understatement of the year?) and here I am 4 years later after 3 rounds of radiation , 2 stem cell transplants and more types of chemo than I can actually remember (4...5...6...?) still fighting to take my place in that 85%.
Whats next for me?
My Doctor recently told me that after all the conventional therapies I have been through that my disease had progressed again. His recommendation was that I try a new drug Brentuximab vedotin (Adcetris) which has had a 72% response rate (32% complete remission, 40% had their tumours reduced by 50% or more) in clinical trials of patients in similar situations to mine. Overall 94% of patients responded positively to the treatment. I was so excited and hopeful that a new drug was available to treat me, but there was one downside... the cost. Even though Brentuximab has been given accelerated approval in the US, UK, EU and Canada, and is now being commonly used to treat patients in those countries because its results have been so promising, Australia has not yet approved this drug as part of the Pharmaceutical Benefits Scheme.
Each time I visit the hospital for treatment the total cost is $11,361 ($10,326 for thats days dose of Brentuximab and $1,035 for the afternoon in the chemo ward). There are 16 treatments in the full course... a total cost of over $180,000.
How the hell am I paying that? I'm not from a wealthy family, I don't have savings and i've never had much luck with lotto tickets!
Well... I'm cashing in my super, which isn't much as I haven't been able to work consistently since I was diagnosed and i'm borrowing the rest. I know I'm incredibly lucky to have access to this money at all and I can't even comprehend how heart-breaking it would be to know that this treatment was available but you just couldn't afford it.
How can you help?
This is where you come in, my amazing friends and family are organising fundraising events for me to help pay back some of my debt. If you can come along to one of our events, donate goods, contribute your time or talent or just have some words of wisdom to share I would love to hear/see/meet you!
I'm also trying to raise awareness of the difficulties some Australians face in accessing potentially life saving cancer drugs and how long Australians have to wait for access to these drugs compared to other countries around the world. As 1 in 2 Australian men and 1 in 3 Australian women will be diagnosed with cancer by the age of 85 this is an issue that affects all of us and our loved ones.
The best news every!
After we managed to raise enough funds through out Bright Night Ball and donations for me to have 8 rounds of treatment I have received the BEST NEWS EVER.... im in remission! After a long time of thinking that we were running out of hope I am feeling so hopeful and excited about the future.
My Doctor thinks the best chance of me staying in remission is to finish the full course of treatment, so on we go... fighting this every step of the way (together)!
Thank you for taking the time to read my story and have a look though this site. I'm incredibly grateful to my friends, family and those of you who only know me a little or might even never of met me before for spending some of your day with me.