Friday, December 24, 2010

Christmas Blessings

Yesterday afternoon I had a wide excision on the upper arm to get rid of the rest of any Liposarcoma lurking around, and give us a nice margin. I went in at one, and was out by four. I cannot thank Peter Mac and the awesome staff there for getting me in two days after the final results came through, and by-and-large being awesome. I wasn't completely put under, it was a twilight anesthesia, and I've had problems with Local anesthetics before, so they were looking for me to tell them if and when I had issues with the local, which I did, briefly, but they were on top of it. They sent me home after a bit of a rest, with instructions to take Panadol six hourly.




They gave me a long-lasting Local, so the pain didn't kick in until about 8pm, but when it did, Boy, did it kick in. My arm started swelling, so I was straight onto the number for patient liaison, who clucked at me being given nothing but Panadol, and advised me to see my GP in the morning if I could last that long, or the hospital if I couldn't. I went into the Doc first thing and he all but laughed at Panadol being prescribed, and wrote out two scripts for something stronger. It took the first two doses to get on top of the pain, but now that I have, it's bearable. Moving is still painful, but as long as I rest, it's bearable.

More than anything, I'm glad it's gone. And that I've got such a supportive partner and family. What a Christmas present!

I hope everyone who celebrates gets what they need this Christmas, whether that's a particular present or time with their loved ones, and those who don't - enjoy the weekend!

Tuesday, December 14, 2010

Pace is the Trick

If you're wondering why there's been no news on the Exploding Arm CancerTM*, it's because we're basically in a holding pattern. Our Exploding Arm Cancer Doc, because of the rarity, doesn't trust anyone but his pathologists to give him a clear picture of what we're dealing with. Fair enough, says I. So far this has been looked at by no fewer than four TEAMS of pathologists. There's bits of me growing in labs in three states now.

That DOES make me slightly edgy in terms of delay. It's still in my fricking arm, but I'm sure that they wouldn't leave it in there unless there was damn good reason to. Basically, if they take it out and it turns out they should have done something first, they're going to have put us far further behind than if we wait another few weeks. We're still operating under the assumption that it's only going to be a slash and stitch job, and that this'll be done early next year, but it just depends what the final pathology turns up. Unfortunately it looks like this hasn't been seen before in every doctor who has seen it so far.

So, we're basically at Hurry Up And Wait. Most days - unless it's a day where my arm is incredibly itchy or we're expecting results back - I forget about it. The fact that I know we've got the very best looking into it, and I've got the best chaserer-upperer in the business fielding the phone calls in Jeremy means I've been able to be pretty chill about it. After all, they wouldn't be leaving it in there if there was a danger to my health beyond the obvious.

*Exploding Arm Cancer is Jeremy's name for it. Personally, I've found it helps to make as light of it as we hope it will be. Particularly when it's incredibly itchy or gets sore, which can be worrying. Since there was no margin we're also operating at the assumption that it's still in there since my Doc only took out what looked like a cyst, and it's highly unlikely that got it all, but as we caught it so early we can afford to be conservative in terms of treatment.

Wednesday, November 24, 2010

Onwards

Had my first appointment at the Peter Mac institute today, and the news was overwhelmingly good. Yes, I have Cancer. Yes, it's a Liposarcoma. But because we got it so early, I'm only going to need surgery. That's it. That will, in the specialists opinion, cure me.

It was the best news we had any right to expect. All I'm going to have to have is more tissue taken out, and I'll end up with a six to ten centimetre scar. The best bit of the appointment was the bit where he had to examine the rest of my upper body for anything suspicious looking, and when he noticed my stomach and chest scars, he said "Well, I can see the scar on the arm isn't going to trouble you too much" He was efficient, professional, knowledgeable and - a quality I'm rapidly finding essential in a medical professional, blunt.

Compared to the treatments other people have to go through to stay healthy when they discover Cancer, what a small price to pay.

I'll take it. What's a ten centimetre scar for my life? Nothing. A day or two off work, a week or two out of the gym. Nothing.

And now we know where we are, on to the wedding planning! And maybe I can get back to sleeping now. I think that's been the worst bit of this for me - trying to operate and cope with stressful news without sleep. It puts you so far behind, trying desperately to cope with a head full of exhaustion-fog. I felt - this is the only word I can think of for it - fragile. Everything was just harder whilst I didn't know.

But, onwards.

Tuesday, November 16, 2010

Good News

Verbal results from lab in Perth this afternoon; Primary Cutaneous Liposarcoma. My GP thinks I may be able to get away with just some more surgery on the arm to give a margin (At the moment we don't have a margin), but he's deferring that decision to my surgeon, who is experienced in this kind of Cancer. We should know tomorrow what his thoughts are (He's out of town today) and whether I will be under his care solely, or will need to be referred on for further treatment.

Fingers crossed its the former, but this is some fantastic news.

Sunday, November 14, 2010

Interrupted

Forgive me for the stream of consciousness here. But I'm thinking in five minute blocks at the moment. This post has taken me five hours.

So, Jeremy and I are engaged. That happened on the 1st November, and was just a really perfect, happy moment. The ring is gorgeous, the proposal was spontaneous and sweet, the wedding we're looking at will be beautiful. But, life interrupted.

A week later, almost to the hour, at an appointment that I thought was simply to take the stitches out, I found out that a cyst I had removed from my upper left arm was not actually a cyst but most likely a Liposarcoma.

Cancer.

And a particularly rare one. Not news I was in any way expecting. Jeremy was so little expecting it he was reading a Monthly magazine and didn't hear a thing and I had to repeat everything my Doctor had told me.

The one time I do not want to be a special snowflake is when I'm looking for treatment options and next steps with Cancer. Liposarcomas are rare. They make up less than 1% of Cancer diagnosis's. The type we think I have? Makes up 9% of that 1%.

Because of its rarity, the pathologist who'd examined my PretendCyst for the Doctor (With free "extremely worrying" commentary on the growth rate) needed to send it to an expert. Which, it turned out, was in Perth. And its not like they can fax or email across tiny slivers of my PretendCyst, they have to be physically sent. Which meant that the "We should have the results on Friday" bit became "Mid next week at the earliest" becomes "Sometimes these things take time", "Oh, okay we'll send it to a lab in Kew, that might speed things up"

I was supposed to have more tissue taken out on Thursday to improve the chances that we had a margin - that's one of the other concerns at the moment - because we were operating under the assumption that it was a Cyst, there is very, very little margin. But the surgeon I spoke to early Thursday morning cancelled the surgery, because he wants the exact type and Grade of the Cancer nailed down before we do anything. And that's fine. More speed, less haste, as they say. Depending on the exact type of Liposarcoma I have (Or whatever it is that was masquerading as a cyst), the next course of treatment could differ wildly. I'm hoping, at this stage, to get away with more tissue being removed, a couple of "Lets confirm it hasn't spread" scans and some Radiotherapy. If not, we'll cross that bridge when we come to it.

I was extremely lucky in two things; My doctor is thorough, and sent off to pathology the PretendCyst even though he was firmly of the opinion that it was nothing to be concerned about and I basically told him not to bother. Secondly, when he got the report he referred me to a Plastic Surgeon who has worked at the hospital that has the only dedicated Sarcoma multidisciplinary team in Melbourne. He's one of the very, very few surgeons in Melbourne who knew exactly what he was seeing when he looked at the Pathology report, and generously took twenty five minutes out of his day to patiently explain everything to me, and of course to Jeremy. He also knew that waiting for the final Path report was the best thing to do, and had no hesitation in making that hard call an hour before the scheduled start time, and explaining it to us.

For now, I am going to be completely honest and say I don't think I'm coping well. Or that I have absolutely no idea what "coping well" entails, and whether I'm near the mark or not. I'm absolutely exhausted. I'm not sleeping well at all, and the tension is just so energy sapping. I'm tired yet I can't sleep. I'm finding it hard to concentrate on anything for more than a moment at a time. At the moment, Jeremy has been fielding the phone calls and doing the badgering that needs to be done to line everything up, because he is more focussed on action and I'm more focussed on the information. I need that filter so I'm focussed on what helps me be positive, and he's not afraid to step in when I need it.

What is freaking me out is that this was on my upper arm and protuded out of my skin like a clear, tannish mole thing. It seemingly appeared overnight, but it just didn't look dangerous. And the Doctor and I left it for four months and I watched it grow. We were conservative in taking it out when we did - we had absolutely no reason to think it was anything other than a cyst, no reason to take it out at all, really - but I watched it grow. It was growing so fast that in the last month it was there the Doctor and I estimated it had doubled in size. And the only reason I had it removed seems trivial. I could see it in my peripheral vision when I was typing, and because it was new I found it distracting. So when it came up again, I was happy to suggest taking it out. Jesus. To think that something so utterly mundane may have made a difference in how quickly we've caught this. What if it hadn't been so close to the skin?

Those are the worst thoughts, and they're probably 5% of how I'm feeling. The rest of me knows that we probably caught it early, that scans will probably show no spread and that we really couldn't be luckier with lobbing on the doorstep of the surgeon we did. And our family is being terrific. Most of me is thinking one step at a time, and thinking positive. But of course, when you tell someone, you tend to tell them all the bits. My outlook is generally good. I have moments of sadness, and moments of anger. I can't be bothered with trivial things right now. I don't have the patience. And that's about all.

I am incredibly fortunate in this. I landed on the door of one the few surgeons who has seen and operated on this type of cancer, and he's able to refer me to the exact right people. The surgeon took it upon himself to discuss the Pathologists preliminary diagnosis and confirm that yes, we are looking at Cancer. Not knowing exactly which one because they are so rare does not, unfortunately mean it might not be. But I have every confidence that we are in the best possible hands. And that is six months time we'll be thinking back on this time and be out of it. That's the focus for now - one step at a time, and get this thing done.

Saturday, November 13, 2010

Song for a Sunday

Any song with "Hover Gondola" is a win.

Saturday, July 31, 2010

Policy questions unanswered

A lot is being said right now on Twitter about the media and the questions being asked of the party leaders during this election campaign, and whether they are focusing enough on policy or are asking questions the public is interested in.

My feeling is that the world of Journalism, from what we know of it, seems quite insular. Is there a temptation to ask questions not because you think the public want the answer, but because another publication is asking it?

The thing that got me was how many Journalists who are on Twitter seemed to have the "See if you can do a better job" style of engagement in this discussion. Rather than point out where - if it is in fact the case - people are asking them to get this information and acknowledge that there is at least a section of the community who ISN'T getting the information they want from the journalists asking the questions of the party leaders, at least some of the journalists seem to be throwing hissy fits that anyone dare criticize them and refuse to see what the problem is.

Here's the problem as I see it: Gillard is being asked questions that are totally irrelevant to the way she will run the country if elected. Rather than ask what is ACTUALLY going to be done about infrastructure and population growth outside of the tiny percentage that is boat people, she was asked about her earlobes. Rather than ask questions about the $12,000 in support to be given to families with disabled children for early intervention and what criteria will be applied, she was asked about photoshopping of her appearance.

Rather than ask Tony what the criteria are for "Severe disability" and what "Up to $20,000" means and how they will apply to his Education card scheme for disabled children, he's asked about the Cabinet leak in the Labor party. Rather than ask him what measure he has in place for Early Intervention and why the scheme does not extend to people with disabilities not classified as severe, he's asked why he's got his family with him. Rather than ask him why Joe Hockey when appearing on the 730 report stated that of course they won't change the Fair Work Act, "full stop", but they're quite happy to change "what the lawyers tell them it's ok" to, we're treated to another question about Tony's apparent "woman problem"  

Policy Issues are being left out of questions in favour of Gotcha-style journalism. Chris Uhlmann's first story for ABC News 24 was a prime example. Rather than focus on current policy and the current campaign, he chose to stick the knife in Kevin Rudd sending a staffer along to Security meetings in his stead. As acknowledged by all involved, that was never done for major meetings or when issues of import were discussed, but Chris chose to use the piece to demonstrate "contempt" shown by the former PM to public servants.

The leak by Laurie Oakes - that, Quelle Suprise - not everyone agrees on policy brought to Cabinet straight away, was another example. Think people don't talk about Cabinet discussions after they occur? Check out Labor in Power. An entire documentary based on Cabinet discussions and the like. It's not new, it's barely even news. Laurie is a heavy-hitter, and his questions make people sit up and take notice. Imagine how the debate could be shaped if instead of questions about whether Kevin Rudd had been asked to campaign or whether he'd told them he wouldn't we had questions about Healthcare. Imagine if instead of questions about earlobes we had questions about Dental health schemes. Imagine if instead of questions about airbrushing we had questions about infrastructure.

Campaign coverage becomes less policy-focussed by the day. We're catering for those who vote on personality, who swing for a sound-bite, and aren't interested in anything but the profile of a politician.

We're dumbing it down. Do the Journalists of this country really think we're more interested in Julia's earlobes than the way she'll run this country? Do we care more about Tony's speedos than we do how he'll run this country?

If that's the case, Mea Culpa, Journalists. If not, you're treating us with contempt. Ask some questions about policies and stop treating this like a campaign for Prom Queen and King. It's our bloody country at stake, whoever wins.

Thursday, July 22, 2010

Bastardizing Part One

Almost the first thing I do when I hear about a recipe is think about how I can adapt it to what I would like. I'm fussy, and almost no recipe is going to suit me straight off the page. Dinner tonight was a prime example. I'd seen something, somewhere about Caponata, a Sicilian Aubergine (Eggplant, Aussies) stew that's traditionally served cold or as an entree or accompaniment. It's supposed to have herb vinegar, capers, olives and parsley stalks, and has a unique salty, tangy flavour which mixes gorgeously with the creamy texture of the Aubergine.

What I made tonight would probably not really even be classified as a Caponata, but here's what I did;

Ingredients

One red or green capsicum
five tomatoes, ripe as possible
Red onion, two small or one large
One large Aubergine (purple, if possible)
Two small or one large zucchini
salt
half a tablespoon of oregano
half a tablespoon of mixed herbs
One large cob loaf
Red Wine Vinegar or similar
Two cloves of garlic

Method

Preheat oven to 200 degrees celcius.

Chop Aubergine into large pieces, add to hot pan with two tablespoons of olive oil with chopped zuchinni. If your tomatoes are not very ripe, I would add them now as well. Toss until Aubergine well coated and starting to brown. Add Red onion and garlic. I added probably a teaspoon of salt at this point as well. Add two or three glugs of red wine vinegar at this point, and see how you go for consistency. Too much will result in sogginess, not enough and the eggplant could become tough.

Once the onions start going clear as onions are wont to do and the red wine vinegar evaporated, add the tomatoes if very ripe. I would add the capsicum at this point to have something with a crunchier texture


Grab your cob loaf and cut a square from the top so you've got a lid. Scoop out the middle to make as much room as you need for the stew. If it's a very fresh loaf, you probably won't even need to scoop. Add some cheese to the bottom


Shadow is an optional extra, natch.

Add the scooped out bread, torn, to the stew, mix through and scoop the stew into the bread


The cheese at the bottom should provide the bread with a bit of stability, but this is why you don't want it to be dripping soggy, just nice and moist.

Put the lid back on and put on a flat tray in the oven for seven minutes, or until bread starts to brown

Remove from oven and slice with a bread knife (The temptation might be to use a sharp knife so you don't drag at the stew, but that it just going to make your life difficult with a baked loaf) into desired serving size. This is a very filling meal, so less is most certainly more. The serving below was about three times more than either of us could eat, and it's really not that big a plate.


It turned out better than I'd hoped. Moist but not too moist, creamy, tangy and filling. Apart from the eggplant and red onion (Which really made it for me), you could use any vegie you've got lying around in this. You could substitute brown vinegar at a pinch (using far less) , use a Pana de Casa for authenticity, and add the capers and olives if you are actually serving it as a side dish. I honestly think combined with the vinegar that capers and olives would be too much flavour and would take the subtlety from it, but certainly that's how it would be done traditionally. I would not advise balsamic vinegar. Aubergines soak up oil and vinegar like bread. The flavour would be overpowering in my opinion.

Another idea I'd have pinched from Ro if I'd seen it in time (the cheese at the bottom I nicked from her, the cob loaf I'd already decided on) was using small dinner rolls instead of a cob loaf, or if you're serving as an entree' and don't want to be fiddly, using a ramakin or souflee dish and forgo the bread. The torn bread really soaked up some of the liquid though, so I'd recommend throwing some in, anyway.

Tuesday, April 06, 2010

Heart full of music

I was going to write a very different post here, but I'm in two minds as to whether I should or not, mainly because there's parts of my life I used to talk about that I now don't feel that I can. It's all very well to expose yourself to the jackals, but others? I don't think I have that right.

It's kind of sad. This blog was my outlet. Now it feels too delicate. Too easy to say something I "shouldn't". Do I say what's on my mind? Do I only write about things other people are writing about, which seems to be where I'm headed? I rail against 'letting them win" by not saying things I want to say, but in the end, does it matter? Does not saying something hurt as much as things I could say would hurt others? 

I know what my life is. I know where my heart is. That, for now, is enough. My home is one of flowers and laughter and love. My heart is full of music. And the best thing is that I'm sharing it with someone who sneaks out in the morning to take photos so he won't wake me by pottering around, and notices my initials in the water. He comes back with a song in his heart that he plays while he shows me the photos.



I'm sharing my life with someone who drives me out beyond the lights and has a soundtrack to the stars we point at and the constellations we track with the nifty Google Sky. Someone who couldn't have taken better care of me while I've been ill (Don't ask. It's too complicated to explain), someone who kept the house running - I did no housework or cooking for the best part of three months - and did it all again with only a weeks break when I borked my shoulder pushing myself too far too fast, and helped me see that asking for help is far less stupid and insulting to the people I love than stubbornly acting like they wouldn't help me in a heartbeat and getting stuck with your shirt above your head because you cannot move your arm. 

Basically, what I'm saying is I don't know where this blog is going. Or if I'll keep it going. I won't delete it, but I certainly can't write the way I want to anymore, and I don't know what that means for this. Some of why I "can't" write is that I'm not in the same place. I'm not the same person. I guess the voice we have through our lives changes, and the outlet that's best for that voice changes with it. 

Time will tell, I suppose.

A big shovel load of credit

Usually, I am not Herald Sun columnist Susie O'Briens biggest fan. Usually, I find the pieces she writes factless and vacuous.

Today, she has totally blown me away with this piece on Refugees and the hyperbole that surrounds the issue. 

I'm not going to say much about it, because she's already said everything I would say myself. But I will quote the ending, as it sums up my position on Australia's refugee intake nicely;

"People, let's get some perspective. These facts have been missing, and all we're getting is tough, empty talk by men wanting to win elections.


We should not, and must not, apologise for treating the world's most disadvantaged people with compassion. And don't forget that it is never illegal for a person to enter our country - via land or sea - in search of freedom from persecution. In fact, it's our responsibility as a stable, wealthy land.
If we are going to have a debate, let's debate facts, not the fear-based fantasy."
She backs up that position by doing her research into the actual numbers and the issues behind them. I could not be more impressed.

Friday, February 12, 2010

And, normality resumes

Last week I actually agreed with something Andrew Bolt said.

I knew it was too good to last.

The byline from the front page of the Herald Sun website, with Andrew's new article:

"IF he hasn't yet burned down your house, lost your cash or fried the guy in your roof, you might laugh at Kevin Rudd's latest joke"


Andrew Bolt, on the front page of a prominent news site, accuses our Prime Minister of Arson. He says, right there, that Kevin Rudd is burning down peoples houses. Also, I won't be sleeping tonight, because up until now, I didn't know there was a guy in my roof. God only knows how he got up there, what he's up to, and - most disturbingly - how Andrew Bolt knows about him.


But it gets better. On the Prime Minister:


"He's come up with this excuse for the drop in his support: that he still hasn't sold you enough spin.

Swear to God! That's what he said...."
Except he admits, in the next line, that the Prime Minister actually said something completely different:
"Here are his exact words: "I think our challenge is to communicate more effectively that which we have done.""
I can see where Andrew got confused. The word "That" is in both sentences. 
It's a good thing Andrew is a professed atheist, because swearing to God and then admitting you're fibbing in the next sentence isn't looked on too kindly on by most deities.

Wednesday, February 10, 2010

Good lord

Some of the comments on this article make me ill:

"Is anyone surprised that this is happening under Australia's mandarin speaking prime minister?"
Yes. Because learning another language means... what, exactly?

"Could you just imagine if K Rudd and his bunch of misfits were in government back in 1942? They would have engaged the Japanese to make armaments and clothing for the Australian digger serving in New Guinea. Why doesn̢۪t he just hand control of our intelligence gathering over to the Chinese as well?"
You get that we're not actually at war with China, right? 


"Not only as a member of the RSL but as importantly a Proud Australian Citizen I feel a huge sense of anger towards the Australian Federal Government to even consider such a deplorable move to have OUR uniforms that are worn by our brave men and women to be made in ANY country other than Australia. Mr. Rudd your relationship with China has gone too far and you are a disgrace to the Australian flag."
Bet if we took a look around your house we'd find plenty of non-Australian made merchandise, wouldn't we?


"So we can drive tanks from the USA and use rifles from Germany but we can't wear unifroms from China. Smacks of racism to me."
A voice of reason?

Seriously, we use planes, helicopters, guns, expertise from countries all over the world. Half of our clothes, a lot of our electronics and countless other things we never think about day to day would be made in China. 

What exactly is our problem here?

Friday, February 05, 2010

He's got a point

It's certainly not usual for me to read an Andrew Bolt article and find myself nodding along in agreement, but this story makes a lot of sense.

Black Saturday, in terms of the history of bushfires, was an anomaly. A rare, devastating event the likes of which we've not seen before. It challenged some of the advice given by the fire-fighting authorities, and provoked a Royal Commission which increasingly looks like a witch-hunt, given the individual authorities are represented by one legal counsel, meaning their individual interests will not be served by that counsel.

The big question for me though, is do we reject conventional wisdom - based on years of studies and a history of success in survival rates in bushfires - or do we abandon what we know based on one catastrophe, that we don't know for sure will occur again?

I used to live in the Blue Mountains in New South Wales. My family - the family I lived with when I first came to this country, still does, just inside the borders of the National Park. There's a verandah out the back overlooking the valley, and we used to sit there, feet on the railings watching the fires crest the furthest hill - three or so kilometres away - and be told there was no immediate danger.

That was based on the advice of the park rangers and the Fire Authorities. If that had been Black Saturday, leaving even then may have been too late.

How do you prepare for something like Black Saturday? Do we flee every time when a Code Certain Death is called and gradually become complacent as to when to go, ignoring that the best advice previously - the most successful strategies - have always been based on preparing yourself and your property and knowing how to defend yourself and your property? Do we wipe the advice based on years of study and go with Code Useless Panic evacuations that will gradually ebb away the diligence of people evacuating, so they're neither preparing themselves in the most effective way possible, nor leaving before it's too late?

I don't know the answers. It would be a shame if we don't learn anything from Black Saturday, but shouldn't we be careful that what we put in place is based on fact and not on Panic Overdrive?

We drove up to Kinglake on Australia Day, and the devastation was terrible. But looking at the trees, nature knows how to repair itself. Let's hope the communities do as well.

Monday, January 25, 2010

The "gift" is obviously not a sense of self-preservation.

You're the leader of the opposition party, and you're fighting the idea that women-voters will have a problem with you. You're trying to play down the fact you tried to bring approval of RU486 under your personal control, that you're a vocal opponent of choice, and that you've got an image as a Catholic prurient hypocrite, who thought he'd knocked up his college girlfriend but is all about the abstinence, and removing the choices women can make about their own bodies.

What's your next move? Telling women their virginity is a "gift" and they should wait to give to their husbands after they're married.

Of course! How silly of me. I mean, let's forget the fact that Abbott famously didn't practice what he's now preaching, or that - is it just me? - a lot of women are going to think it's none of his fucking business when women do or don't have sex for the first time.

I realise that Abbott is probably answering the questions he's being asked, and in way I kind of admire the fact that he's not sugar-coating what he believes. In one way, he's won a certain amount of respect from me, being open about his beliefs and how they shape his politics. It would be so easy to try and distance himself from his previous record. I'd much prefer he was honest about it, but seriously? Regardless of what the rest of your policies are, Abbott, you will never, ever, ever get my vote.

You have shown yourself to think women cannot make decisions for themselves during your reign as Health minister. You have shown yourself to be a hypocrite by expecting young women and men to live up to standard you demonstrably cannot live up to yourself. You have shown that you will put your own religious beliefs before the health and wellbeing of the women of this country, and I hope that every single woman and man in this country remembers that come polling day.