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And now for something a bit more lighthearted…

by admin on June 3, 2010 in , with No comments

… like …

How FUNNY is cancer?

Seriously!

The thing that has surprised me the most over the last 6 weeks is that even in the absolute worst experiences of our lives, it can still be funny if you choose to see it that way. It’s how my Grandma always saw the world and how I do too.

I guess this is the part where I potentially piss off someone who will inevitably scream “OMFG HOW CAN YOU SAY SUCH A THING?”.

Of course Cancer, as a disease, is not funny. In fact, it’s pretty awful. But still, I have the belief that anything in life can have an upside and a funny side, and I am unapologetic about that. And when you sit around, waiting for someone to die, it very quickly becomes boring. And repetitive. And… gradual. And kinda gross. And sometimes sad.

But also… funny. And often more funny than you’d think.

But people always focus on the sad parts – you know, those Hollywood notions of what it’s like to be on your deathbed with cancer, or to watch someone you love on their deathbed with cancer… but in the real world, even the quickest-killing cancers (like the one that is killing my Grandma) have an initial “shock” period, followed by shitloads of waiting around, talking, philosophising and yes, laughing our arses off. There are no candlelight vigils at her bedside, no dramatic upward glances towards the man in the sky asking “WHY?”, no opening of old wounds or even resolution of old conflicts.

Most of the time it is just sitting around, talking. Frequently about the same thing every 10 minutes. Sometimes, because of the swelling in her brain, complete and utter hilarious nonsense. There is also a lot of hand holding, back rubbing, shoulder stroking and mouth-goober removal, as well as constant reassurance that she is not going to fall out of the bed, that she is already in her bed and no, she can’t go outside because it’s 8pm. But mostly, we laugh.

She talks nonsense sometimes, is confused most of the time and sleeps the rest. But we laugh.

She is incontinent and wears nappies. But, we find a way to laugh with her about it.

She is paralysed on her left side and increasingly losing control of her right side. But, we don’t draw attention to it and subtly move her arm so it’s comfortable and rub her feet even though she can’t feel much.

And she tells my 8 year old daughter to make sure she has sex “20 times before getting married”, says the funniest of things that I have tweeted but have since forgotten… but still make me smile at the thought of her laughing.

And when people at the Hospice, or other well wishers, give me that look like “wow, you must be doing it tough” and looks of support and sympathy, there’s a bit of a disconnect because for me, because even though I know that cancer is killing my Grandma, in a roundabout way it has been an incredibly enriching and utterly comical experience.

Except, of course, for that bit where she dies. That’s devastating. But I know that when she does go, she will want me to think of her, smile & laugh – not cry. But I will cry. But I will also laugh. And that is one of the greatest gifts she ever gave me, was to laugh at everything. Even cancer.

On crashing to reality.

by admin on January 12, 2010 in with No comments

So, I think I have figured this whole thing out.

I have Cyclical Cushing’s – and with that, I cycle regularly between symptoms of Cushing’s and symptoms of it’s just-as-shit opposite Addison’s Disease. Now if you think having Cushing’s sucks balls… well… I’ve got news for you: I don’t believe there has ever been a scarier moment than this weekend when my cortisol levels crashed.

And you know, I have kinda been through some shit.

You know, 4 months ago I really just wanted to know why I was feeling crappy and gaining weight. I had a bunch of symptoms that on their own are fairly inocuous – reflux, ongoing weight gain, muscle weakness, burning face, crappy cycles, bad pregnancies… you know… silly things that age you faster but all in all, aren’t all that life threatening.

When I started to develop more severe symptoms like joint pain, fatigue and "roid rage" and had finally figured it out I was all "yay, I know what’s going on! I might actually start to look and feel like a non-mutant one day! I am cycling, I figured all out!" and I have to admit I was relieved, but not taking it too seriously because you know, my symptoms were annoying.

But, 4 months ago, I didn’t know what the fuck I was in for because now, my disease has started to progress to scary.

And it ain’t fun, or a relief, or anything anymore.

I have been feeling pretty ordinary for the last week, but for most of the last 3-4 months that I have been aware of Cyclical Cushing’s and have been noting the symptoms, I have been pretty much in a high cortisol, normal-cortisol-slightly-low-cortisol type of thing. It’s meant that the lows have been annoying, because I am tired and in pain and having trouble walking. But, it would pass after a day or so and I would be OK. I am still functioning.

But this weekend, there was a moment where I thought that I might not actually survive this.

For the first time I realised how serious this actually is… and how if I went to the hospital they wouldn’t even know what to do.

I knew the crash was coming, because Jason’s Worker’s Compensation claim finally settled after months of stress. I had planned for the stress to cause a crash at the end…. because that sort of thing has happened to me for most of my life. I laid fairly low on Friday, felt OK, so on Saturday we went to hang out with friends.

I was a little low, sore, tired, nothing I wasn’t used to. Bit flat but otherwise dealing… they swam, I swam, it was OK. Then, I got out of the pool and holy shit. All of a sudden I didn’t know where I was, couldn’t hold the knife to butter bread, had tremors and the most intense feeling that I was about to vomit and collapse at the same time. But, me being me and the control freak I am, just became fixated and upset about the fact that I couldn’t physically butter a bread roll.

My friends love me, but I am still trying my best to protect them from what’s going on. Mostly because if I let on, there is that tiny, tiny part of me that is afraid of being labelled dramatic, or whatever… and also that when I see them I like to pretend that I am not sick for a day. You know, like just pretend for one day a week that keeping my eyes open during a "low" is not a minute-by-minute struggle. And you know, noone wants to be the sick friend. They’re a drag.

So that moment passed relatively ok, some concerns of course, but you know… I just moved on in blissful denial, grazing on corn chips so I didn’t spew… and all was good. I had a couple of drinks and the word-slurring that went on in the evening led Jason to think that I had had more to drink than I actually had – all was good.

And on Sunday, holy shit. Got up, wasn’t feeling good, went to get some food, ate food. And what happened next I have absolutely no idea because somewhere along the way I had completely blacked out. I mean, I felt exhausted, but one minute I was sitting in my office, the next I woke up an hour later, in my bed, without clothes. I don’t remember anything. I don’t think I had a seizure this time, because I didn’t have that tongue-tingly thing, but I can’t be sure. I felt like death. I couldn’t move. I could only sleep.

And then I was fine again.

And then yesterday, I was fine, because I had a meeting to work up to, I had taken some stimulants to help me out, and then I got home, had dinner and then CRASH! for an hour again. Even on meds that are supposed to keep me awake.

I’m worried about the cycles becoming more extreme and more rapid. It’s now 13 days till my next endo appointment where I decide if I am going to Los Angeles or not.

I am trying to be as positive and whatnot as I can, but right now, I am just scared. Mostly because I know how bad Doctors have been to me in the past… and I have never been this sick before. So, now, I just want to go back to 6 months ago where I was a bit fat and a bit tired and had no idea what was going on.

I blinked… and I missed it. Happy Birthday to my little man.

by admin on November 7, 2006 in with No comments

Well, today is the 7th of November, Mr J and you know what that means. Well, no, actually, you really have no idea. It is now one whole year since my wonderful little man was born, and brought so much joy to our lives that I honestly cannot find the words to describe it.

I always wondered if it was possible to love another child equally to your first. When I heard people say “oh, you love them the same”, I wondered how that was possible. Much like, when I was pregnant with Mina, I wasn’t sure if I could love my own baby as much as I loved my niece! And of course, looking back on both of those things now makes me laugh, because you know what? It is possible to be absolutely one hundred percent in love with one child, and absolutely one hundred percent in love with another. But, like I have often over heard people saying, I actually don’t love you and Mina the same. I love Mina because of who she is, and I love you for the special little man you are becoming.

Right now, you are just about cruising on the furniture. I don’t think you are quite ready to walk yet, but hey, there’s no hurry! You also had a bunch of teeth all come in at once — one week there were no top teeth, the next week there were FOUR of them!

You are always asking for your Dad, and don’t yet refer to me as “Mum”. I know you love me anyway. You have learned how to wave hello and goodbye, and like all new tricks, you practice it over and over again. You drive me mental by turning my computer off when I am working. You have taught me to save things frequently.
You’re still bald, and its kind of funny because I look at some other 1 year olds and think to myself that you can’t possibly be as old as they are… you are still my little baby, with your not-yet-unblue eyes and your big bald head.

Let’s talk about that head. My word. I am sure you already know that this whole “boy” thing has been a pretty steep learning curve for me. I remember the days when I was vigilant and actually childproofed and that was with your sister. Mina never needed any childproofing because, quite simply, she never got into anything and never made trouble (hard to believe now!!). With your sister I was just so lucky because of her temperament and also because I had more time, I ended up being pretty relaxed.

Then you, my normal, curious boy of a baby suddenly got mobile. And you fell off things, fell on things, ate things, chewed things, spilled things, stabbed things, drank things. You went head first off a change table, head first off the couch. You bang that giant noggin of yours daily and come out unscathed. You’ve definitely got that Smith bogan head.

My GOD, boy, how on earth you have managed to survive with me as a parent, I have no idea! I feel like I am learning how to be an actual parent of a toddler this time around, and I even contemplated buying cupboard locks for the first time this week! But, you do it all in the name of learning and thats ok with me. Watching you explore, turn around and look at me with your twinkling, cheeky eyes just makes my day.

Its hard not to be reflective at your kids birthdays – and man, I have had a hell of a year. I spent the months between July and November worrying about whether you were going to be very premature because of preeclampsia. Somehow, I was the lucky one though and you managed to not only hold on, but on your birthday at exactly 37 weeks, you weighed in at a spectacular 3.195kg. Thats a great weight for an early baby that had the problems you did.

I remember the weekend before your birth like it was yesterday. On the Friday before, after months of constant monitoring, things started to escalate. I developed Bells Palsy on one side of my face (I forget which one) and hyperreflexia. My blood pressure also started to head up. I wasn’t admitted until the Friday evening, but because I was stable, I spent all weekend in hospital and tried to hold on till Monday. By Monday morning, my blood pressure was at 160/105 so it was very lucky they caught me.

I had the most wonderful c-section that was empowered and wonderful, despite some people thinking that it was a bad thing. The main thing that mattered to me at the time, and still does, that you are happy and healthy. And anyone who thinks that anything else is important can go fuck themselves.

I also spent a month away from you when I was in hospital. During that time you cut your first two teeth and developed a bond with your Dad that I am occasionally jealous of, I have to admit. But I know you love me, even if the first thing you ask for is “dada” and the last thing you say is “dada” — that’s so incredibly awesome but I do feel pangs of jealousy that you don’t say “Mum” yet.
Anyway, I just thought I would write this little post to mark your first year on this planet. You are growing into a wonderful, secure and hilarious little boy, and I loof forward to seeings what’s next. Hopefully its “Mum”!