Some photos!

Here are a couple of photos from Ben and Susan's wedding...




I am hoping to get some proper photos of how I actually look now (ie bald) rather than keeping the pretty pretty races photo up. It's like posting a glamour shot on a singles website. Underpromise and overdeliver....

Just some questions...

How do stupid people get sick in this country? How do you deal with the hospital, the pharmacy, the x-ray clinic, Medicare, health insurance and all the other bureaucracies preying on sick people if you're stupid? I am not stupid. I have two degrees. I have no idea what's happening most of the time. I just hand over my credit card and sign on the dotted line.

I paid my hospital excess at the beginning of the year when I went in to have a port put in. As you know that operation failed. A couple of weeks ago I got a call from that hospital saying that because the operation wasn't a success they were refunding my excess. The fact that I still had AN operation, and was still in hospital seems to be irrelevant. Then the other hospital where I have chemo, who had been asking for excess for weeks (interestingly, a different amount than my acutal excess) and who I had been telling I'd already paid it, sends me a bill for three different things that made no sense - but funnily enough adding up to $500 - my excess. I took the bill in and asked them to explain and they had no idea. So I paid it anyway.

Great news at the pharmacy though! I've reached the safety net and all my drugs are free for the rest of the year! I am happy. But then I have a quick look at the form they're about to send off, and ask about the limit - I thought it was a bit low. Turns out they decided some time in January that I had a health care card. I'd queried them when my drugs got cheaper and was told that it was because I had a 'chronic' condition. But they put on my file that I have a health care card. So the chances are now good that they will ask for the backpay on all my drugs. $25 by over 60 prescriptions - you do the maths.

Of course, I am actually eligible for a health care card - IF I go to Centrelink and tell them all about my income and everyone who buys me dinner and how sick I feel on Tuesdays and everyone I snog and how often I poop. To be honest, it's worth the couple of thousand each year to not have to deal with Centrelink. Cancer patients are bludgers who rort the system too, you know.

So how do stupid people get sick in this country?

And my next question. Sounds simple, but there is really only one person I can ask, and she is very busy and it's a bit stupid to call your surgeon to ask such a dumb question. However, it is a burning question.

Do I have a cervix?

Not that I even know what a cervix is or what it does. I asked my doctor here and he says he has no idea (whether I have one, he probably knows what it is and what it does), but it's a question no one has ever asked before.

I am off to Sydney tomorrow and very much looking forward to it.

Love you all,

Jess xoxo

Out of the woodwork...

Wow.

This is what's missing in so much of life. Real sharing and love. This is what happens when you make it okay to be vulnerable and actually share your pain. People respond. And you do understand. And I'm not alone.

For the past few days I've been really good, actually. I have re-remembered something that I actually know quite well, I was just ignoring in all the wallowing. Happiness is being content with what you do have. Unhappiness is being discontented with all you don't have. At no point is the situation any different. This is what I believe is at the heart of so much malaise in society. People are so focussed on what they don't have that they forget to look at what they do.

Thank you to those who came out of the woodwork to tell me I'm not alone. Thank you to those who read my blog and quietly called just to say hello, to show me I'm not alone.

I don't really have words to tell you what it means to me. So let that be evidence enough of how touched I am. Ultimately I have to travel this journey alone. But it helps that I have a full caravan of support vehicles.

I found a brochure for a support group here in Brisbane. It was an eight week course, and they wanted $320 for the course. $320 to talk about yourself and do a bit of meditation. That's $40 a session. Blogging is free. Instant talking about yourself. You guys rock, you are a great support group. (They also wanted women with a 'positive' diagnosis. $40 to talk about yourself and the fact that you're already going to survive. Sheesh.)

There is something I want recorded for posterity but at the same time I don't really want to share with you guys. It is definitely an overshare. But it has been my sole waking thought for the past couple of days and as such needs to be recorded as part of the cancer journey.

Poop is like health. You don't really miss it or even think about it until it's not there. And if it's not there, then you can't think or do anything else. Unfortunately, with poop, it's still there. It's just not going where it's supposed to be going. It just sits there, making you as sluggish and as stupid as a stoned hippo. And about as fat.

It's very easy for a doctor to say "Well Jess, we've given you enough drugs to constipate an elephant." (Quote.) Have you ever seen a constipated elephant functioning in normal elephant society? Well, it's not possible. There is only one thought, and it's quite a depressing, humiliating one. "Must... poop."

(Yes, you rude buggers, I have had success.)

See what I mean? Definitely an overshare. But oh, such a big part of the chemo journey!

Yes, hi to all my colleagues, and everyone at church. Oh dear.

I have gone back to feeling blessed for all the good things in life, and less focussed on the giant buttocks. It is normal to be sad about things, but it is not my whole life. I reserve the right to be sad sometimes, and not feel bad about it. I will also share it more often. And I also reserve the right to be happy too. And I reserve the right to chop and change between the two and all the grey in between as much as I bloody well want to.

This round of chemo has actually been quite good - very little nausea, very little bone pain and now that my little problem has gone away, it should be quite smooth for my trip to Sydney next week. So much of my well-being boils down to the three Ps - pain, puking and poop.

Pussycat Dolls are on tonight! My Dad actually bought round a radio so that I could listen to Radio National. I think he thinks I'm rotting my brain. He's probably right.

Thank you again.

May God bless you as much as he does me.

Jess xoxoxo

Some random thoughts

My first instinct here is to apologise for the last post. It's an instinct I'm going to resist. Just as I've resisted the instinct for the past several days to log back on and either take down the post or put something else up.

I'm trying to share the whole cancer experience. Not just the funny stuff. And I have to be honest, there's a lot of bad stuff as well.

There's a lot rolling through my mind lately. So this is an unstructured post, just to share some of the things that I think about.

I nearly died today. I was in the hospital getting a bag of fluid because I need to drink a lot after chemo (which happened yesterday) and I can't do it alone, some anti-nausea drugs and an injection to make my bones burn. The nurse put a burette up to allow the anti-nausea drugs to drip through and forgot to make sure that the bag of saline was reconnected. About twenty minutes later another nurse from across the room noticed that it wasn't dripping at all. The original nurse came over and started it going again, and then spent ten minutes removing the air bubble from the tube. The same air bubble that if left unchecked, would have gone into my veins and aneurysed me. Not really sure how I feel about that. A bit weirded out, actually. Ten minutes more of no one noticing (including me, I should say), and that last poxy post would have been the last one for posterity.

I suggested to another nurse yesterday that it would be funny to find the stash of sicky bags (see down the bottom of the page link for a picture - amazing invention. So much more civilised than a bowl that you then have to peer into while waiting for the next heave.) and prick them repeatedly with a pin. She was, probably quite understandably, horrified. I don't know why my mind thinks such things. Probably an attempt to hide from the pain.

I bet every comedian has a deeply depressive side.

Lemon meringue pie vomits up really well. Not as well as water, but that doesn't really count. Pineapple vomits up the worst so far. So acidic.

My dad asked me last night what it is I want from life. So here it is. I want... to get married and have kids and a house and choose schools and worry about them and renovate and go to work and spend time with my family. I want what so many people look at in their lives and think "is this it?" I'm trying to make decisions as to what to do with the remaining years of my life. And people keep telling me to do what I want, to do what makes me happy. But what I want is not an option anymore. So it's not a question of doing what I want. It's a question of doing what would be least worst. Because this path is not what I would have chosen.

I should have pointed out in my last post (and would've, if I wasn't too busy wallowing in misery) that I am not in fact alone, no one is ever alone. God is always with me, God is always there to share my pain. But sometimes it's so easy to lose sight of that. Jesus is just not physically available for hugs. It doesn't mean he's not there though.

And I'm trying to see that God does have a plan for me. And I know he does. And I just need to be open and willing to embrace that plan. But sometimes I'm scared that the best thing I can do with my life is die and teach others about death and life and love. And that scares me.

I've realised that a lot of God's promises - his joy, his peace - will probably now be fulfilled for me in the next life, not in this one. And on one hand that is wonderful - it means I'm not afraid to die anymore, and sometimes I look forward to the release. But on the other hand, it is so deeply saddening - I am losing so much of my child-like faith that no matter what happens in life, I will always be happy, that there will always be good things.

Sometimes I just feel like I am floating on my back in the great toilet that is my life, waiting for the next great pair of buttocks to appear above me and shit on me.

Yes, I have actually spotted that I'm depressed. In fact, I've been mildly depressed for weeks now. I only got really depressed when I realised that I was depressed. That was a very depressing moment.

So let's look at all the wonderful things in my life:

My mama, without whom I don't know that I'd even bother sometimes. She does so much for me that I feel bad for even being depressed. I love her so much.
My brother Ben, who calls me "the sun that illuminates all else".
My brother Tim, who is in teenage world, and speaks mainly in grunts and monosyllables, but who called me on my birthday and spoke for nearly an hour.
My dad, who asks the right questions when I get lost.
My step-mama, Beata, who would do anything to make me feel better.
My sister Sophie, for having so much love in her for me that she can't express it and has to make monkey noises.
My step-dad, Dave, who let me cry on his shoulder on the weekend. And would do so every day of his life if that is what I asked.
My Auntie Annette, who loves me so much.
My aunts and uncles and cousins.
My grandparents.
My friend Amy, who has my name tattooed on her arse. (She also watches the Pussy Cat Dolls with me.)
My friends Brad and Jacqui, who are bringing me down to Sydney next week.
My friends Rachel, Michael, Jo and so many more.
My colleagues at the Palace for not forgetting me, for reminding me that I used to be a contributing member of society (well, business anyway) and could one day be again.
My doctors and my nurses.
The people who comment on my blog and make me feel like I am being heard out there. Well done especially to Marion - thank you both for overcoming the technology and for the recipe!
My motorbike dreams.
The fact that I have two arms, two legs, a mostly functioning body and a mind that still works.
The fact that God looks after me and blesses me everyday, even when I'm too self-centred to be grateful for the blessings.
Fruity-bix.

Notice a theme there? The things I am most grateful for are the people in my life. In fact, there are four great Fs in life - faith, family, friends and food. (Yes, I know Amy. Ta by the way. I didn't see any copyright, and I amended the quote anyway. Blogging is like that.)

So I am grateful to my God, for his great blessings and promises.
To my family, for loving me and caring for me so much.
To my friends, for choosing to be my family, and choosing to love me.
And to food, just to make life really good. Besides, who wants to die skinny? (I've had no takers yet on the Pooh Bear email thing, either by the way. Tell your single friends.)

So while I'm going through a bit of a depressed phase, I'm sure that's normal too. And you know what? Even if it's not normal, that's what's happening now, so that's what has to happen. So there. And I haven't completely lost the plot, I still have so much to be grateful for, and I will still find things to make me happy. Mostly people, God and food, I suspect.

Oh, and humour, and having a laugh whenever I can. Any suggestions on what I should wear to my final chemo ever (because I'm buggered if I'm going to do it again)? I am open to suggestions. I'd make it a competition, but the last one failed. One entry? You guys are so slack. I know I have more time on my hands but still!

And just to show that I haven't completely lost my sense of humour (and probably to really highlight the truth of my last post) and also to reward you for sticking out such a long post, here's a little something I wrote about the Pussycat Dolls two weeks ago...

"Words fail me. There is now a forum for young women to stand up and ask "Am I skanky enough?" Who then cry when their dreams are shattered as they are told "No, in fact, you have too much class to be in our club".

Search for the Next Pussycat Doll launches on Sunday night. Every teenage boy's dream - a whole host of scantily dressed girls gyrating to try to prove that they have what it takes to be the next great slu - sorry, burlesque dancer. (A what?) Apparently now every teenage girl's dream as well.

I thought being sexy was for the boys. If I go out in my 'check 'em and weep, boys' bra, it's for the boys. I would never dream of getting all tarted up, getting a bunch of girls to check me over and then ask if I was hot enough and let them point out my flaws. And you know what? It's bad enough that we DO do it for the boys. Unfortunately, I've never had a guy walk up to me and say "Phwoar, your degrees are so hot. And your kind nature really turns me on." (He'd probably get quite a good response, though.) But to do it for our fellow girls in order to establish a hotness pecking order?

The thing that gets me is that these women get paid to act this way! There is money in skankiness! Lots of it! Just look at Paris Hilton! It's almost enough to make any girl hide her brains and flash her boobs. And the way things are going, that's what the next generation of girls will do.

Unfortunately, along with all the teenage boys, dirty old men and pre-pubescent impressionable females, I'm probably going to tune into the first episode. It's like driving past an especially gruesome accident. (And besides, if you're going to bag a show, you really should watch at least one episode.) Actually, my best friend and I are making a party of it. We're arming ourselves with those irritating party blowers in order to express our feelings in the really bad bits. We'll eat M&Ms (to make sure we'll never be 'hot like them', but don't worry, we have brains and talents and careers and stuff) and spend the ad breaks yelling at each other about how degrading this is.

What I want to know is what happens to the Pussycat Dolls in twenty years time? If instead of intelligence or talent you've based your career on being 'hot like me'and asking people to 'loosen up my buttons', what happens to you after your boobs sag and you've sacrificed your stomach muscles to a baby or two? Maybe we need to ask the question - where do Pussycat Dolls go to die?

Pussycat Dolls - Where Are They Now? Now that's a show I'll be tuning into!"




And in last Sundays's episode (yes, I've now watched more than one) some girl got voted off because - get this - she was TOO SKANKY. They called her Striperella. The shame. Too skanky for the Pussycat Dolls. To be completely fair, I didn't think she was any skankier than the other girls. I really liked her, actually. In a condescending sort of way of course.


Thank you for being there, people. Thank you for reading this and letting me express my pain so that I feel heard, so I don't feel alone. Thank you for loving me.

Thank you Mama. Thank you for birthing me, raising me, letting me go and then taking me back. Thank you for being there, thank you for being you. Thank you for loving me and taking on the pain that's associated with loving me. I love you more than I will ever have words for.

God bless us, every one. (Thank you, Tiny Tim.)

With much love,

Jess

Something I've learned

Laugh, and the world laughs with you. Cry, and you cry alone.

Isn't that strange? We cry alone. When others are most needed, we cry alone. Or at least I do. My tears and my pain hurt others if I show them. So I cry alone. In bed, before I sleep. In bed, before I wake up. In the bathroom. Alone.

I used to have someone I felt comfortable crying to. That was how it worked - I supported him in tough times, he supported me. But he quit.

And there are so many people who love me, who would want me to cry to them. But if I cried to them, that would cause them pain, and I don't want to do that. It hurts me even more to see them hurting, just like it hurts them to see me hurting.

It's so much easier to laugh with others than it is to cry. If I laugh, if I make my hurt funny, if I post on this bloody blog, then people think I'm doing okay, which makes them feel better, which makes everything so much easier. Except that sometimes I'm not doing okay, and I haven't worked out how to be not okay.

I want to lie down, have someone put their arms around me and let me cry without them having to take on my pain. Without reminding them of their pain.

Don't worry, I'll go back to laughing soon. But I won't stop crying alone.

Not as epic as the last post, I promise!

Well, the weekend on the Gold Coast has been and gone, and now I'm up in Mackay for Easter.

The Gold coast weekend was wonderful. It was so good to feel normal and hang out with my wonderful friends. I teared up as soon as they walked into the arrivals lounge. I actually got a bit depressed on the Friday night after they arrived - they are so happy and I was having such a good time just talking and joking like it used to be that I got depressed because my life is no longer like that, that my life has become the way that it is. Does that make sense? I know it was stupid to ruin the good times by dwelling on the fact that they've changed, but I couldn't help it. We used to be happy and laughing all the time - it wasn't just special occasions that I look forward to for weeks. In the end, because they are such good friends, they listened to me whinge, vent and cry about how rubbish my life is, then it was out of my system and we could go back to having a good time.

On Friday afternoon, before they arrived, I drove down to the Gold Coast (on my own, in the pimpmobile, hurrah!) and checked into the hotel. I went to the beach and spent some time on my own for the first time in weeks. It was a bit strange actually, I was a bit emotional on the beach. Then I picked Brad, Jacqui and Rachel up from the airport and we went to the hotel, then went out for a coffee.

On Saturday we went to Seaworld. I really wanted to see the penguins (I'm going through a Happy Feet thing), but unfortunately they all died a week or so ago. No, really, this is my life. (I'm very sorry about the penguins dying, and not entirely for selfish reasons. It is very sad, and I'm sure they didn't do it just to nark me.) Unfortunately, Saturday was an exhausted day. I have them quite regularly, I'm having one today actually. Basically, I am completely bone weary on exhausted days. I can't stand, can't walk, my brain is foggy and I am completely knackered. Standing up long enough to have a shower is exhausting. In other words, bad timing for Seaworld. But we got a wheelchair and all was fine. We got superb front row seats at the dolphin show, courtesy of wheelchair, but completely terrible seats at the sea lion show, courtesy of Mr NotSureWhatI'mMeantToBeDoing, manning the entrance.

About one o'clock I unfortunately started getting tired and cranky (yes, much like a four year old after too many lollies). I'm just not used to being around people at the moment! Even ones I love lots and lots. I'm just a turtle. But that was okay, I sent the others off to go on the rides I couldn't go on anyway and curled up in my chair in a shady corner and read my book. For dinner we went to the Gold Coast International's seafood buffet, where, I am ashamed to say, I gave my worst ever showing there. Only two plates of seafood consumed. Very poor.

Sunday was lovely, we went to Skank Avenue (Cavill Ave) to check out the skanks (most of whom were still asleep or hungover). We did see some teenage mutant ninja turtles though. Then we drove up to Mt Tambourine, where I replenished my fudge supply. Fudge and Fruity Bix, my two staples. Then we drove to Coolangatta, had lunch at the surf club, had a final walk on the beach before the rain hit, and then off to the airport.

And then it was all over. Although on Monday Brad and Jacqui booked my flights to Sydney in three weeks (my brithday present). So I'll be down soon folks!

I then went to Amy's to watch Search for the Next Pussycat Dolls. I've written something on it, stay tuned. (It's my blog, and I'll change the topic from boring old cancer if I want to.) I just need to work out the technology first. It was much better than expected, since half the girls got a virus and there was some great projectile vomit shots. Superb.

Now, I have discovered something truly horrifying. I can't believe no one mentioned this to me earlier. It is a calamity. A tragedy. Truly truly sucky.

In my first cycle of chemo, I lost about seven kilos. Now I know that this is very bad, but secretly I thought it was pretty cool. My consolation prize for that extremely crap experience, if you like. But, like a good girl, I have been trying to gain some weight back, because it's extremely bad to lose weight on chemo. So, ably assisted by steroids that make me hungry at irritating times (4am munchies anyone?) as well as kill off any Olympic career I was planning, armed with a steady diet of Fruity Bix, skim milk and fudge, I have managed to gain a few kilos back.

My jeans are still too big around my legs and bum. They've stayed skinny. I suppose I should take comfort in that. And I would, if not for the fact that my regained kilos now live just above the waistband of my jeans. And we're not talking homemade muffins here. Oh no. This is a mass-produced McDonalds 'Would you like a trailer with that?' triple chocolate chip muffin. I CAN'T BELIEVE NO ONE TOLD ME ABOUT THE MENOPAUSE BELLY!

Now there are some definite perks of the whole menopause thing. Loving the no periods thing. Loving the chemically controlled libido (low please, no point in one of those). Actually, I think that's the end of the perks.

It is bad enough that I can't have children. But to not have children but still look like I am perpetually toting triplets? Sometimes I think that God's sense of humour is blacker than mine. Or at least better because he can make funny stuff happen, not just write about it.

(Oh dear, my sense of vanity has just kicked in. Before you think I'm some bald pregnant dugong lookalike, it's not really that bad. I'm just a girl, and therefore vain. I am comfortingly cuddly. Kind of like Pooh-bear, but without the yellow fur. And with pants on. If that sounds appealing to you, email me. Actually, if that sounds appealing to you, don't email me. You're too weird for me. No, better email me. Pooh-bears aren't in a position to be choosy.)

I liked the dugongs. They were cool.

Today I was knackered again. If I'm this exhausted when I wake up tomorrow, I'm going to have to go down to the hospital here in Mackay and do some blood tests. It usually means my red blood cells are really low and a bag of blood usually cheers me up. It's the Dracula Spectacular, Dracula Spectacular, Dracula Spectacular sho-ow. (A musical I actually did do in high school, O Palace Dwellers. You didn't miss much.)

Now, tomorrow I have a very exciting activity planned, and I will share it with you afterwards!

Hello Craggles! Welcome to the weirdness. No cool photos (although I've been meaning to get some bald shots up to compete with the 'nice' one) but I write more frequently than Pils! He's having more fun though.

Talk soon!

Much love and God bless,

Jess xoxoxo