The other day, on a taxi ride from Wellington hospital the driver announced to us that he knew a miracle cure. It would cure anything. A
doctor had told him so. It is at this point that I begin to shuffle awkwardly in the backseat, grit my teeth, mentally
preparing my politest “mmm’s”, “ahh’s” and other uncontentious sounds. Mike,
also, dropped his eyes and began fidgeting. Chocolate and laughter were the
driver’s super-secret pick-me-up. He even gave me a fistful of chocolate to
prove his point. And that’s fine. It is nice, even. But I was pretty concerned
he was going to start touting hydrogen peroxide or turmeric lattes. A gluten
free diet and magnesium at night. People do, you see. It is probably all in good faith, but that doesn’t make it any less frustrating. Because my magnesium
is measured weekly and immunotherapy requires an inflammatory response so turmeric
ain’t gonna help. No, no, your gluten free, dairy free, refined sugar free
organic air diet isn’t going to cure my cancer. Oh and hydrogen peroxide? The
so-called miracle cure. Gives your body an extra oxygen molecule, you say?
Well, I could explain the complex biological process called breathing to you or, or, I
could whop you round the head for exploiting vulnerable people with what is essentially a pyramid scheme. And I whop good. I’ll use every damn gram/L of my
104 Hb to lay the smack down. Somebody generously offered me God. He has a
sense of humour, I’ve been told. I am not sure that Syria would agree. And what did I just say about exploiting vulnerable people? Something that does
make me feel better is coffee. No turmeric. Strong coffee. It’s required to get
through the day. Actually, I’ll put a pot on now. See if I can’t up this
writing game a bit. Chocolate and laughter do help too. And cheese. And beer. The
taxi driver didn’t do too bad really.
Emily McDowell, who’s had cancer, has designed a bunch of cards. One says “I am so sorry you’re sick. I want you to know that I will
never try to sell you on some random treatment I read about on the internet.” The
fact that this card exists, has a need to exist, sucks. I would like to
see a bucket list card. Something like ‘No, I’m not just ticking you off a list.’
At this point in my life it is dangerous to have lists. This is the time where
I can ‘live the moment’. A list would be restricting, and a little insulting. I
am never going to be happy about tagging out early. No number of ticks are
going to make that ok. That is not to say I haven’t been doing things. I have,
just not in any particular order, or for any particular reason other than an impulsive
urge. I know I said earlier that I could only find positive end-of-life blogs,
and that this one wouldn’t become one of those. Well, it probably won’t, but I
have learned that the reason they’re possibly all so fucking positive is
because on the down days the individuals are too tired to write. Or if they do,
the words are not concise enough to make their blog. I have entries I wrote
when I was rapidly losing my mind and, funnily enough, they make little sense.
So I know I just announced my disapproval of diets, lists,
and positive terminal blogs, but I have cancer so my memory is a little dodgy.
Some may term it “hypocritical”, but hey, let’s not use labels here. I remain,
and will continue to remain, a vegetarian. And sometimes, when one reads that
something is a possibility, like standing on the rim of an erupting volcano,
one just can’t help but think ‘fuck, I need to do that’. I never knew that was
something I wanted to do. Neither did Mike. Neither did my sisters. But there
we were, sometime in August, trying to start a crazy volcano cult in Vanuatu. Unfortunately,
the cult didn’t take. I think we would have had more success had my hair been
longer. Hair length is directly proportional to cult uptake rate, right?
My medical team don’t need to know about the volcano
incident. That’ll remain our little secret, if that is ok. They know I am
travelling, it is just that sometimes communication issues arise. They’ve heard
‘boutique resort’, when what I really meant was an off-the grid one room hut made
from bamboo branches and banana leaves. It’s merely a matter of interpretation.
They thought I meant Cairns, when actually I meant a boat an hour or so off the
coast of Cairns. You know, on that
big ass reef. Oh, you thought I was going to be looking at the reef through a
glass bottom boat? Crap, no I meant through a snorkel mask. Man, I really need
to work on my communication skills. So many misunderstandings. Whoops.
Hindsight, eh?
There are practical issues that need to be considered when
traveling whilst terminal. Again, these do not appear on any blogs. The issues
range from the obvious: flight time, hospital proximity, fatigue management; to
the less obvious: transfusion facilities, border medication policies,
transportation quality. With my prednisone biceps and thighs, I cannot stand on
the back of a four wheel drive ute. Just little things one needs to consider. Insurance.
Insurance is another issue. I know in the UK there are companies that will
insure cancer patients. I have heard that there is one in NZ. I don’t think any
will insure a terminally ill patient. Some won’t go near me. You can almost hear the website laughing at you. I tend to travel
without insurance. Like, I have it for my bags and stuff, but medically, no not
really. Southern Cross have a box you can tick that says you have a condition
that you don’t want insurance for. It means that, technically, if I were to
break a leg, I would be covered because it is unrelated to my condition. However,
I imagine they would find an out there. I imagine that everything would somehow
be related to my condition. We use Southern Cross anyway, despite knowing we’re
probably going to get screwed if anything should happen.
On our first trip I searched
for travel advice. All I could find was information on flying with oxygen
tanks. OK, so I’m not that sick. And that was something that surprised me. On a
flight to Apia, when to be honest I wasn’t the healthiest, I glanced around the
plane and realised I wasn’t the sickest on-board. Sure, I probably have the
shortest life expectancy, but I don’t need a wheel chair or special assistance.
Not yet anyway. I’ve found that secrecy works best. You never know when
Jetstar will decide you’re too ill to travel. I think of it like I’m a
kick-ass superhero. Ok, well yeah so my powers are a little faulty, but my
identity still needs to remain hidden. Sometimes, duh dah dah, I am unmasked,
usually at communal dinner table with that kryptonite question: “so what do you
do?” Quick guys, what do I do? I haven’t come up with a decent response yet. “Finding
myself” sounds wanky, “retired” sounds sarcastic, and “well, actually I am terminally
ill” really kills the conversation. It is a tricky yet frequent question. I am
fortunate, in a way, that nobody from my past tends to recognise me with the short hair and all. But I have always been slightly
awkward, so when somebody strikes up a conversation with me, in the supermarket
say, and they think they’re talking to a stranger, yet I’ve known them most of
my life… well it’s a dilemma. Because if I own up the first question they’ll
ask is “what are you up to?” And let’s be honest; I’m up to fuck all. A common
bum reliant on opiates, caffeine and bloody Mary’s to make it through the week.
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| I'm all at sea! |
If I have pissed off any terminal patients because they feel miserable while I look like I am on top of the world, don’t worry, I’ve also felt like shit. It’s just that none of those entries make any sense, and often the hard times soften in memories. Think of the all things you no longer need to worry about. Saving for a house. Next summer’s fashion. Flossing. These are aspects of life that just no longer matter. You can raise a middle finger to your phone when it reminds you, for the tenth time, that you’re listening to music far too loudly and it may cause hearing loss. Ha! Not really an issue. Try bugging someone else little phone.
Gosh, so this post has gone nowhere. I guess the main purpose was to let you know that I am still alive. I’ve spent a good portion of the last six weeks in locations without cell phone or internet coverage. There’s been a bit of swimming. My Hickman line is gone, you see, so I can snorkel with turtles and sharks and nemos. Again, something I never thought I wanted to do, until I nearly couldn’t do it. That’s the point. A list implies that things need to be done. I prefer to think in terms of things that can be done. Opportunities, not obligations. A list has an end and I don’t want an end.
