Thrills, pills and a headscarf

The End.  This is it now and I find myself slightly lost in how to write about the end. I've done the introduction and taken you through a twisting and turning plot; and I know the story ends because all of ours do ultimately, but how does one write that final chapter? How does one process that it is the final chapter?  I got told a couple of weeks ago. In fact, I got told I may only have a couple of weeks to live and as usual I've stubbornly disproven that theory. I'm no fool though, I understand my life is now being measured in weeks; and not necessarily that many of them. In fairness I almost died (I'm not exaggerating) about two months ago, so in a weird way I'm still one up. I have a very serious infection in my liver which sent me into septic shock; the intensive care unit; and a very blunt conversation of all the things that could happen that they wouldn't resuscitate me from. I have never been so terrified in my life and I experienced a new level of pain...

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...

When I was learning my dodgy version of Spanish I found a phrase I really connected with. "Tener ganas" was more than it's loose translation of to want something. It was like a desire, a feeling inside of craving a thing. At least that's how it was described to me. I loved it. I didn't just want to go to the pool when it was 38 degrees, I craved it. I didn't just want  to go out dancing, I desired it. My friend and I loved it so much we incorporated it into our bastardised Spanglish vocabulary with sentences like "I've got ganas to...". It really meant more to us than to just want. Language is a wonderful thing. I'm a geek and enjoy the affect language can have when it comes to communicating a point or painting a colourful story. So, yup, I'm blogging about language today. Geek away. As you probably know I inadvertently joined the cancer club almost three years ago now. It was a giant oops in my life but here I am in a club nobody ev...

I got another good scan result recently. That's the third one in a row. I'm nervous to say this because I don't want to jinx it but that's an all time record in the "journey" that is this cancer battle I'm doing. I've smashed my previous record, of one, out the park. And by one I don't mean one in a row; I mean one in the previous two years. Before this year I'd had one, only one, good scan result from all the scans I'd had. Somehow, even though the trend had been a series of bad results, I remained hopeful every single time. Every time I hoped I would be told the tumours were shrinking, that they were responding to the treatment, but that wasn't the case. Scans actually seemed to mean the three monthly meeting to consider the next treatment step. Except that one good scan I had. Before that one I told my oncologist that I knew the tumours had responded to the radiotherapy on my liver. I don't know if I really did know or if that ...

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 the bus pulled up I suspected this was going to be an uncomfortable ride. There were plenty of people at the stop, cards ready to tap on, and already things were looking pretty full in there. It was only about a 15 minute ride so definitely achievable but I wasn't feeling too excited about it. We all climbed on and juggled our way down the aisle finding a suitable place to stop. I strategically placed myself next to a pole and leant my whole body against it. Looking longingly at the courtesy seats full of seemingly healthy people I thought to myself "shit, I wish I looked sicker". It's a weird thought to have. I spend so much of my life doing everything to avoid looking sick and here I am thinking "if I looked like a cancer patient in the films, you know the ones who are completely bald, with grey skin and that tragically sad look permanently plastered on their faces, someone would definitely offer me a seat". Damn my able-looking body. Maybe I should...

I think it's fair to say I'm a social butterfly. I'm like the mother of social butterflies. It's not that I don't like some time to myself, but I really get my energy from getting out and spending time around others.  If I didn't look so much like my mum's family, this trait would easily back up my brother's adoption argument. Much like the poor ugly duckling, I think I'm the social butterfly accidentally born into the keep-to-ourselves ladybird family.  Needless to say the amount of time I need to socialise to stay energetic and happy in life is much higher than others close to me. It's also something that terrified me when I found out I had cancer. I remember telling a friend early on that I was terrified of going into treatment because I didn't want to become boring to be around. She assured me she thought it was an unlikely outcome but I remained unconvinced. This was a big barrier for me to have to face and what I've reali...

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...

These last few weeks I’ve been waging mental war against the demons that like to creep in from time to time. This presents itself in many ways, a lot of which can go unnoticed by others and rely on me to take action. I can struggle with motivation, have trouble keeping a positive frame of mind, get annoyed by small things and struggle with eating – either not wanting food or not eating well. I have the ability to acknowledge that there are many reasons this could happen. I’m still waiting to find out what will happen with treatment (almost two months of not knowing); I’ve been very sick with a virus which knocked my more fragile body about and this has stopped me doing things I would like to have done. Not being active or social are immediate red flags for diminishing mental health for me and I know I need to work harder when these things are limited. I often get comments about how happy I am. How I almost always have a smile and am so positive about such an unfortunate illne...