Thrills, pills and a headscarf

I love an inspirational quote. I'm a bit of a sucker for a nice little line to pick up my mood. As some of you may have noticed, Alice in Wonderland is a particular favourite of mine. However there's one line I see quite regularly that I just can't abide - the "This too shall pass" phenomenon. Something about this one really winds me up. I think it's the naivety of it. The truth is, not everything does pass. I got diagnosed with cancer over three years ago. Initially I thought I would take chemotherapy pills for two years and then I'd be done. It would pass. That was naive. Once you've been diagnosed with cancer it doesn't pass. Even if you recover and get the all clear, it doesn't pass. You get to live with the knowledge that you can be attacked from within your body, without knowledge, at any time. I would say for the majority of people who have had or have cancer, you live with a heightened suspicion of everything you feel. It wasn't...

On Saturday I posted a photo of me smiling in the hospital. Saturday was one of the first times I felt like smiling while I was in the hospital. Things haven't really improved but they're semi-controlled and I had decided I just needed to have a good day. I've actually had a really rubbish month. While the world has been falling apart with the Covid-19 threat, my world has been doing it's usual kind of cancer related falling apart as well. I attempted to go into isolation long before we were told to as a country. I'm already high risk thanks to a lung tumour and the medication I'm on so I intended to hide myself away in my safe little house and we introduced a whole lot of extra levels of germ control to stop anything getting in. Unfortunately my body had ideas other than isolation. My amazing drug that has been keeping me healthy (based on my low standards) appears to have made my immune system a little confused and it is now attacking my liver. That'...

I posted this photo from the plane as we returned back from Sydney on Friday. I was smiling; and that was very genuine. I was relieved and thrilled, and a little stunned, to hear the word stable on Wednesday. It was a feeling I could not have imagined before this diagnosis. I regularly share pictures of me smiling because I am generally pretty happy to be alive. I'd like to share a little behind the build up to this most recent smile. In December I got my usual pre-Christmas bad news. I love Christmas and all the fun, celebration and family time that comes with it. Cancer appears to be pretty determined to challenge this love because, instead of coal in my stocking, which actually seems pretty appealing these days, it gifts me shitty news each pre-Christmas appointment. It started in Christmas 2016 (pre-diagnosis) when I found out my liver wasn't functioning properly. Christmas 2017 it gifted me some new tumours in my newly regrown liver and a very difficult decision on w...

Today I had a total meltdown. A public meltdown. The kind of meltdown that involved tears and cries of I can't cope. At a reception desk. With a load of strangers around. A meltdown at total strangers. It wasn't my finest moment and now I look back at it I can laugh and say "wow, that was a bit crazy of me. I guess nobody should mess with me at the moment". It was a meltdown that had me warning my mum if she couldn't contact me I'd probably been locked up. Looking back at it I also feel completely justified. I had treatment yesterday. As much as I like this drug, treatment always makes me feel a little bit shit. It is a foreign substance being injected directly into my central vein, after all. I slept yesterday afternoon and as I slept an allergic reaction started to develop. This is unfortunate as, completely unrelated to cancer, I also have the world's most ridiculous allergy, to dust mite. There had been some work done in the hotel I stay in at trea...

As those who follow my social media know, I have been able to access treatment in Sydney now. I am receiving an immunotherapy drug which I was unable to access in New Zealand. Since this cancer is very rare (only 1 in 1-2 million people will get it) there is no sure fire way to treat it. Researching a definitive way is a little challenging when there are very few people to test on. We've followed any protocols there were along the way and added in a whole lot of determination and amazing experts who are prepared to brainstorm together to find the best option at the time. Now there's no set route. Immunotherapy drugs are new in the scheme of cancer drugs and I'm a lab rat in lipstick when we're trying out what might work. All I know is that not doing anything has the most certain result. A result I am not keen on. So a giant thank you to all those who made donations for me to access treatment!!! There are not sufficient words to express how grateful I am. I was stunned...