Through the shit of it.... sorry I mean thick of it.

Written, as promised, for my mother.

Since I started travelling I said you always want things to go really right or really wrong - you never want average. At least with really right or really wrong you've got a good story. This is a rationale I started applying to life too. I had no idea how much it was going to come back and bite me in the arse!

About a week after returning from my South America trip I sat in a cafe with my mum in Karangahake, discussing many things including my health - or lack thereof. She said to me that I may be giving a false impression that this is an easy journey with my positivity. That several people had commented on how well I was dealing with this and I acknowledged I had had similar comments. So, because it's the year of yes and because I love my mum (even though I tell her the wonderful daughterly things like how terrible she is and how I'm pretty sure her carcinogenic toasted sandwiches were the cause of the cancer in the first place), I agreed to write this blog about the shit of it all - something I had been planning on doing at some point anyway.

I often describe this last year as rolling with the blows, with each one that comes I get up again, only to be struck by another and have the cycle continue. As I've said in previous blogs, this last year has involved two surgeries, oral chemotherapy, intravenous chemotherapy, a hospital stay for neutropenia and now it's looking like radiation therapy all to extend my life for as long as possible.

Preparing for my first surgery

                       A small amount of the damage                                             Post-second surgery

Yes, that's right, each day I have to face my own mortality in a far more urgent way than many my age. As I said to a friend "Life is Incurable" (meant in a positive way in the context) and the truth is I have to face up to that on a regular basis. I get to sit in various hospital rooms and discuss the fact that more tumours have decided to join the party, that every treatment has it's side effects and that the honest truth is some could show me mortality far sooner than I had planned. Last week I sat in my Radiation Oncologist's office discussing the risks of the treatment I'm planning to go into - including liver failure. All I can say about this is when my back's against the wall, I come out fighting. It's always been my nature and I intend to do the same this time.

This is just the start of the crap we go through each day. I say "we" because it's not just me that deals with the effect of this cancer but those close to me too, especially my beloved mother, who never quite managed to melt cheese between toast without life threatening effects. My mum is there for some of my worst times and sees me at my lows and although I certainly didn't plan to be moving back in with my parents at 30, I absolutely adore them for all that they do for me.

So what is the reality of this journey I'm on, aside from the regular discussion (and black humour) regarding mortality?

Nausea is insane! I have so many anti-nausea drugs you'd be forgiven for mistaking the cupboard for a pharmacy! And I like to nickname them. I have Dom Perignon (my staple, three times daily including breakfast), the good stuff (Nauzene, one of my favourites because it doesn't seem to have any side effects), Ondansanansanan (Ondansatron, a back up which I try to avoid) and NoziNozi or the really good shit, or sleepy pills (Nozinan which not only knocks out the nausea but knocks me out with it so is reserved for night time). I also found out after taking the Nozinan in hospital that it was originally used as an anti-psychotic. I joked that I was feeling really stable; not true at all since I'm more crazy now than I've ever been - incurable diagnoses will do that.

While on the topic of nausea, sick buckets are one of my favourite decorations. I have one in my room, one in the bathroom, one by my chair, one in each of the cars and one in my handbag...I think that's them all accounted for. Most go unused, they're like a safety blanket, but the need for them is real. While travelling in South America that one in my handbag made precautionary debuts on several occasions including the middle of a street in Santiago, the Eva Peron museum and a frantic search for it in the toilet of a restaurant after barging in on some unsuspecting lady who had forgotten to lock the door. I apologised profusely in Spanish while trying to keep everything inside only to barge past her again as soon as that door opened! Afterwards I pulled myself together, felt horrendously guilty as I saw the pregnant woman waiting outside, and rejoined my friend at the table who thankfully insisted on going home immediately where I crawled into bed and passed out.

Needles and tests are so regular I'm starting to wonder if I'm a lab rat or something. I have needles so often I can't even think. I actually have a speech for it, "My veins aren't very easy to find. You can have whichever arm you like if it means you can get in. The left arm bleeds better but has scar tissue now. Your choice. " I then make light conversation and look away to go into my lovely. safe, meditative state when I see the needle come out.

CT Scans have been a popular activity for me this year. For those who haven't ever had one, let me describe the experience of my first ever. After donning a stunning hospital gown and having a needle inserted into my arm I was taken into the scanning room where they went through the description of the process. First you'll get a metallic taste in your mouth (undesirable but manageable), then you'll feel warm all over (not so bad), then you'll feel like you've peed your pants (I'm sorry, what?!). Yes thats right, since the tumour was found, on approximately eight occasions, I have, falsely I may add, felt like I have wet my pants. The thought process on that first one was even more amusing. "I know they told me I'd feel this but what if I actually have?! What if I get up to find a puddle? And I'm not going to feel sure until I go to the toilet and then if I have what do I do with my underwear?" All while trying to remain completely still with my breath held for a scan. I'm still convinced it's an unnecessary side effect and there are actually cameras in the room to provide endless entertainment from the expressions of each patient - I wouldn't judge them. Anyway I'm not sure it's a good thing to get used to the feeling of wetting my pants but now I just giggle briefly and then hold my breath to get sent through the scanner.

Ready for my most "pant wetting" experience

I'm not always positive. I have pain, nausea, fatigue, dizziness, shakiness, I've become more dependent on others and the oral chemotherapy I'm on regularly can give me the blues meaning I can lose the plot about the most ridiculous things. Crying is a pretty new concept to me and one I'm still not comfortable with. It's made me a far more sensitive person, I'm hoping a nicer, kinder person overall but not always pleasant to be around. I tend to lock myself away in my room during those times and not inflict them on anyone but it's not always possible. For example on getting admitted for neutropenia I was in a shared room and it would be fair to say I didn't love the other inmates. For reasons of fairness I won't share my nicknames for them; I can simply say they weren't all adoring. I was miserable in those two shared rooms and to add insult to injury I was told to wear a face mask to leave my room. Well I just don't do ordinary so on one of mum's twice-daily visits she had to get the lipstick out so we could accessorise.

Accessorise in style!

I was so miserable in there I convinced the doctors I was well enough to go home, only to cause my parents another early hours rush into ED as I collapsed into a wheelchair and muttered unintelligibly. I think the only time I made sense for a while was when they told me they were going to access my port and I explained that if they valued their lives they'd wait until I was in the oncology ward. An oncology nurse was quickly found and all things were resolved.

Finally released and trying to get some calories in

I can't even imagine the stress it causes for my mum to go through this with me. She's turns up twice a day with food because I can't stomach hospital food, she's the one I beg to get me out, she nurses me post-surgery when I'm off my rocker, incapable and in pain. She cooks for me, sometimes for to take one bite and conclude I can't eat it. She was there with me when I had my head shaved and when I discovered my love of sedatives after my port-insertion! My mum has become even more of a legend in my eyes and I sometimes wonder how she keeps her positivity.

The head shave!

And now I'm running out things to brush...

There are many other shit things I could talk about but I have punished you enough and would love you to choose to read another blog one day so I'll just run over other things that pop-up.

Answering the dreaded question of what I do for work (more to come on this in a future blog). I like to answer with hospital expert.

Advice, on diet, on exercise, on how to maintain a positive attitude from people who have absolutely no idea!

Telling people firstly that I have cancer and then that it's incurable and watching their reaction.

Explaining it's nothing to do with my lifestyle habits, nor genetics, just pure bad luck.

Dealing with people who insist on telling me it will all be okay in the end.

People expecting me to look terrible when they see me - I have some self respect, I'm still going to try to look my best no matter how I'm feeling.

And so much more!

So how do we get through this? We joke, laugh, don't take anything too seriously and remember every day I'm breathing is a win!

Twinning!!!

"Don't wait for everything to be perfect before you decide to enjoy your life."

Have wonderful days, even through whatever shit there is beautiful people!