Thrills, pills and a headscarf

It was Rare Cancer Day this month. October the first. At least, I read it was but it seems rare cancer doesn't even get an official date for awareness. It misses out again. I'm acknowledging this potential date of Rare Cancer Awareness anyway. I'm acknowledging it because it's bloody important that we talk about it. I've lost track of how many times I've had to explain that my boobs are one of the few parts of my body still perfectly in tact. When I say cancer, the crowds shout “breast”. Now I love that there is a great awareness that breast cancer is a risk. Hopefully that means all the lovely ladies out there are staying conscious and checking any lumps. There are several women I am very glad had been doing just that and are still around to keep me company. My point is that as a 30-something women it's assumed that my breasts were the guilty party. That was not the case. Macmillan (the number one point of reference for cancer in the UK) states that a...

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...