I’m not afraid of dying

I’m not dying.

I was chatting with James last night, in between sleeping bouts, about things and he mentioned that he was afraid of death, the cessation of being, and I replied that I’m only afraid of dying from the viewpoint that I might leave those I care about (and for) without means to look after themselves, and as I currently have a healthy life insurance policy AND a decent amount of superannuation, this isn’t an issue.

I mean I don’t want to die, I’m quite enjoying being alive, and I’m not looking forward to dying any time soon, but I’m not afraid of dying.  I’ve been faced with my mortality twice now in the last 10 years of my life.  The first time was when I had an ecoptic pregnancy, I was in a lot of pain, I lost a lot of blood, and the whole thing was rather unpleasant (as an understatement).  Most recently it was being told I have cancer.  Sure the cancer was caught at a very early stage, but it’s still a condition that can potentially kill you.

My cancer diagnosis has been stressful, and as there are multiple paths my treatment can take I yet don’t know the exact shape of the rest of my journey, but I do know I’m going to be on the other side of the most invasive part of the treatment in the next 6 months.  I suppose a large part of not being stressed about dying from this is because I am 99.9% certain it’s not going to kill me, it’s just not going to be fun.

But even if I did die, I have done my best to make the world a better place.  I have worked hard to ensure that those I love and care for will be financially stable and secure after I have died.  I have loved and been loved, eaten good food, and travelled to fantastic places.  I haven’t done everything I want, but I have achieved a lot.

Death holds no fear for me right now.  It’s a weird, but good place to be.  I know this comes with a degree of privilege, particularly financial privilege, and I have worked hard to make this the case.  Ten years ago, I would not have been in this position, it is a very recent thing that has made this the case.

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Cancer Update #3 (post op)

So I’m sitting at home now, mostly able to type, much clearer headed, and healing.  There is a wide range of movement I can’t do, and I’m still figuring out bits of that.

I’ve been sleeping in our recliner couch for the past 2 nights as I have been worried that sleeping in my own bed would be too uncomfortable, mostly due to an inability to roll from side to side, and getting up being a real pain the side.  I might graduate to sleeping in my bed tonight, I don’t know yet.  My neck would certainly appreciate me sleeping in my own bed, but we’ll see.

I have two rather large incisions on me.  One under my arm where the sentinel lymph node was taken, and one where the tumour was removed. If I cared about such things, I’m fortunate that both of the scars (when they eventually heal) will be in non-visible locations.  I’m actually a little disappointed about that, I think that scars are cool.

The incision under my arm is the one that hurts the most.  This isn’t surprising as that is the location that sees a lot more movement (twisting, lifting, rubbing, etc).

Yesterday was a day of minimal food as I was still feeling nauseous thanks to the operation, pain and the drugs I was taking.  Today I feel way more human and I aim to try the delicious looking cake my sister has made for me. I also want to go for a walk around the block to get my body a bit more mobile and drop the neck pain I have.

I could go through the ins and outs of Wednesday (surgery), but I won’t (unless you want me to) other than to say it was a really long day, the staff at the Royal Women’s Hospital are fantastic, and that it was slightly worse than I expected it to be.

I won’t get the results of the biopsies of the tumour and sentinel lymph node until Monday week, so in the interim I heal, continue to be spoilt by my loved ones, and gradually each day become more and more independent.

Today I could undress myself, tomorrow I might even be able to shower on my own.  The wonders of a body which can heal itself from invasive surgery.

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Cancer Update #2

So today I went and got my other test results (blood test, biopsy of another anomaly) and spoke to the surgeon and breast cancer nurse about surgery on Wednesday.  I probably won’t be blogging immediately after the surgery, not the least because they’ll be operating under my left arm (in the arm pit) and that means that typing and the like isn’t on the agenda for a few days.

I’ll state this up front – this whole thing seems so unreal.  I am not obviously sick, I do not feel sick.  Apart from some pain where the tumour apparently is against the chest wall, I don’t feel like I have cancer – whatever that feels like.  Wednesday is going to make the whole thing a lot more real, and that’s both scary and reassuring.  Scary because cancer is scary.  Reassuring because I do feel a little like an imposter right now, because I feel mostly fine (just stressed).

Anyway – today’s visit to the hospital had my blood test results completely normal (with slight vitamin D deficiency which is unsurprising as it is winter), and the biopsy coming back completely clear.  We went through all the process for the pre-op stuff, told how much it’s going to hurt (a fair amount), and how much I’m going to have to wait (a lot), and reassured about some of the side effects, like the blue dye that is used to trace the lymph node paths will stain my skin – that’s normal.

Also we went through some worst case scenarios, just so I was across them.  The nurse was impressed that I was so calm and in control – that is my default state, I will probably fall apart later – and that’s ok too.

So a week off work (this week) and possibly some time of work next week to ensure I’m healing well.  A further biopsy of the tumour after it has been removed builds the next step scenarios.  Best case, I have 4 – 6 weeks of radiotherapy a month after surgery, and then on a drug for 5 – 10 years.  Worst case, I have additional surgery and/or chemo before radiotherapy and medication for years.

Yes I’ll probably keep blogging about cancer, because writing stuff down helps me sort through it.  I do want to blog about other things to, and once I’ve gotten the big bits out of the way, I’ll probably go back to doing just that.

I do want to say how grateful I am to have been born in Australia and eligible, thanks to my citizenship, to access free healthcare.  All of this treatment will cost me very little.  The medication will be the most costly part.  The operation, radiotherapy, and consultation visits will be covered by my taxes and the paid taxes of other people.  This is a fantastic thing, and means that I don’t have to ask myself if treating possible cancer is something I need to do or is it something I can live with.  I do wish people in other countries without “socialised medical systems” could access the level of care that I will be accessing for the cost that I will be paying.

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Cancer update #1

So yes, I’ll be blogging about cancer from time to time, as a way to keep everyone updated, and to save me having the same conversation over and over.  Not that that is necessarily a bad thing, but I enjoy efficiency.

Today I had my appointment at the Royal Women’s Hospital to meet the breast surgeon, breast cancer nurse and find out more about the next steps.  I might have surgery as early as next week – which is much sooner than I anticipated.  The breast surgeon also wanted a biopsy of something that was noted in the first radiology report on my right breast just to be on the safe side, so I got one of those too.  It is most likely a regular, bog-standard lymph node, but the surgeon wants to be extra, extra sure because you shouldn’t mess around with cancer.

I was also told that the reason my tumour is so goddamn painful, is that it’s sitting on the chest wall – so that’s kinda helpful and still annoying.

I also need to get a blood test, but as I was insufficiently hydrated today, I’ll get that tomorrow after lunch.  Must go and get a glass of water.

This biopsy was far less painful.  I told the doctor performing it that I cried for an hour after the last one as it was so incredibly painful, so she made sure there was extra local anaesthetic and waited for it to take effect.  We also laughed a lot, which was nice, but weird when people are jabbing needles into you.  I don’t think they appreciated my joke that ultrasound gel is like semen in that it gets everywhere – and I probably should have self-censored that, but I have cancer, and some jokes get made.

So next steps are surgery (very soon), 6 – 8 weeks of healing (and hopefully no follow up surgery), 4 – 6 weeks of radiotherapy Monday through Friday, and then medication for 5 years.  This all assumes that my tumour tests negative to HER2, which I have an 80% of it doing so.

Just quietly, Breast Cancer information in Australia (at least) is incredibly cissexist.  Hugely cissexist, and it makes me uncomfortable.

How am I doing?  I’m pretty good right now.  Every now and again I feel overwhelmed with what’s happening and anxious – but that’s to be expected.  I like having plans, and knowing what’s going to happen next, even though some of that is a little nebulous and fluid because it depends on things we don’t yet know 100%.  I’m not particularly fussed about having scars on my breasts (something I used to think about as a kid anyway, because I liked the look of ritual scarification).  I am somewhat concerned about radiotherapy, because that sounds intense and annoying (but is also far enough away in the future for it not to be an immediate concern).  I am mostly ok with the idea of medication, I think I’ll be able to manage the common side-effects in a way that works for everyone concerned.

Also, outing yourself as non-monogamous at the hospital straight up is easy, particularly in Australia in the public health system in metropolitan hospitals (other areas may vary).  I brought both partners with me to the appointment, and made it very clear that they were my partners.  It was written in my file, along with my medical history, and everyone was cool with it. In fact one doctor said that I was lucky to have the extra support.

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So I’ve got cancer

I found a small lump in my breast, it was tender so I went and saw my doctor.  He sent me off for imaging, and then I saw a specialist who sent me off for a biopsy (that REALLY hurt).  Then I was told I had a very small (8mm) cancerous tumour in my breast.  I’m now an official member of the, “You’ve got cancer” club.  I’m not impressed.

I’ve found the cancer so early that I probably only need surgery, radiotherapy and Tamoxifen to treat.  This all depends on what the surgery and subsequent biopsies show really.  It’s a fun environment of, “Do A, then possibly do B or C depending on results of A”.  Being a big fan of plans, I plan to work out what is going to happen, how I will manage it, and what support I need.

This is a blog post (which may be updated as more info comes through, or new posts added, I’m not sure), which will outline what I want and don’t want over the next 6 months (as a starter).

Things I want

  • To keep working as much as possible
  • Snuggles
  • Chocolate
  • Plans
  • Shoulders to lean/cry on
  • Having meals cooked for me for those days I don’t cope
  • Understanding
  • Conversations with people who have survived cancer

Things I don’t want

  • Advice regarding natural therapies for cancer treatment
  • Being treated as if I’m going to fall apart any second
  • Being told to take time off work

Kvetching circles completely apply here.  This is my condition, my body, my issue.  Do not make it about you, do not make it about how you can feel better that the roll of the dice went badly at my end.  I have enough to deal with, without you making this about you. (This is not currently directed at anyone I’ve told, this is just case it needs saying).

I will continue to work, I will blog, I will study, I will cook, I will yoga, I will … because I enjoy these things, because they’re good for me, and because life goes on.

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Arsehat award for July 2015 – Eric Abetz

Yes, I know, it’s only the second day of the month, but Eric Abetz holds a special place in hell and he opened his mouth on something we’re both very passionate about and he lied, or if that’s not quite accurate, he misstated actual facts.

You see, the reason I know that Abetz is bending the truth, is because this particular story impacts directly on me, what The Australian claimed I said, and the fact that I am very very sure that Eric Abetz and the Australian Journalist Ean Higgins worked together to discredit me, James, and Bi-Alliance Victoria.  This all happened in 2012, so for most people it’s the distant past, but I don’t forget being used by a queerphobic politician who was out to trash a Senate Committee looking into marriage equality (I have a LONG memory).

Let’s start at the beginning and move to what Abetz has done today in a mostly linear fashion.

I published on my blog my submission to the Senate Committee, I also submitted it online as was available at the time (though apparently it was never received by the committee).  James (my husband) who was then president of Bi-Alliance Victoria, submitted a submission on behalf of Bi-Alliance Victoria (see submission 181).  As you can see from both submissions, we called for the same marriage rights for same-sex relationships as people in opposite sex relationships.

Out of the blue, we received a call from Ean Higgins at The Australian, who wanted to talk about our submissions to the Senate.  We didn’t expect Mr Higgins to stab us in the back, so we talked to him, he called back and asked some more questions, and then wrote a factually incorrect article titled, “Marriage for four put to Senate” for The Australian.  I wrote to the Australian to request a retraction and an apology and only got one after I involved the Press Council (sadly not online).

Only after the event did I realise that Ean Higgins and Eric Abetz had probably colluded to discredit my submission, and the submission of Bi-Alliance Victoria, and went out of their way to suggest that by granting marriage equality to people in same-sex relationships, granting legal recognition to people in polyamorous relationships was just around the corner*.

In the dissenting opinion in the Marriage Equality Senate Committee, Abetz and Cash wrote (pdf):

1.27 Coalition senators are of the view that in considering Senator Hanson-Young’s Bill it is appropriate to consider the potential consequences of where the logic of ‘marriage equality’ may lead.
1.28 The majority report seeks to selectively highlight certain submissions received by the committee in support of the proposition that ‘Marriage Equality for same-sex couples is not a ‘slippery slope'”.
1.29 The majority report fails however to acknowledge submissions received by the Senate committee from Mr James and Mrs Rebecca Dominguez and, further, the evidence given by former High Court Justice Michael Kirby at the committee’s hearing in Sydney, which cogently demonstrate that the conclusion of the committee majority in this regard is factually incorrect.

1.31 Mr and Mrs Dominguez are practising polyamorists. Mrs Dominguez is the former President of PolyVic, an organisation representing Victoria’s polyamorous community.
1.32 Both Mr and Mrs Dominguez made submissions to the Senate Inquiry. Only Mr Dominguez’s submission (Submission 181 on behalf of the Bisexual Alliance Victoria) was published due to the number of submissions received by the inquiry. Mrs Dominguez’s submission was however posted on line at http://blogs.bluebec.com/submission-to-the-senate-on-marriage-equality/. While the submissions by Mr and Mrs Dominguez did not explicitly canvass polyamorous marriage, both made subsequent statements supporting this proposition at some time in the future.
1.33 In an article in The Australian newspaper on 23 May 2012, entitled ‘Marriage for four put to Senate’, Mrs Dominguez is quoted as saying: ‘Some time in the distant future we should look at the idea of plural marriage’. On a blogsite entitled Polyamory in the news, Mr Dominguez said:
I just want to re-stress that: despite the Oz misquoting yet again and saying The Greens are “against” poly marriage, they have actually said simply that it’s not part of their platform and they have no plans to pursue it. If there is ever a popular movement to legalise poly marriage in the future, The Greens will be the first to lend their support, I guarantee it. A few poly people are angry with them for not expressing support, but I think we need to be realistic.
1.34 A number of other polyamorists subsequently expressed the view that there should be greater recognition of polyamorist relationships, or disappointment with the Greens’ claim not to support polyamorous marriage.

I don’t think for an instant that any of these Senators are savvy enough to google us, I would expect that Higgins was still stalking us online, hence the comment regarding Polyamory in the News, which James commented on, he wasn’t quoted in the article.

Ok, so why am I dragging out all this dusty history from 2012?

Today Abetz opened his mouth regarding the joint party (Liberal/Labor) Private Members Bill regarding Marriage Equality, as this is an issue that isn’t going away any time soon, and Ireland and the USA have now legalised same-sex marriage (which just looks weird as something to type out – because marriage shouldn’t be illegal, but I digress). Abetz is quoted in the Guardian as stating:

Senior Abbott government minister Eric Abetz has suggested legalising same-sex marriage could open a “Pandora’s box” of legalising other unions, including polyamory.

Abetz called on frontbench colleagues to take “the honourable course of action” and quit their leadership positions if they were unable to support the Liberal party’s “long-established policy” of upholding marriage between a man and a woman. And he suggested the change would trigger subsequent calls to allow marriages between three or more people.

“To try to change the definition now will open a Pandora’s box because if you undo the insitution [sic] of marriage by redefining it for the latest movement or the latest fad you will open a Pandora’s box for all sorts of other potential possibilities,” he told Sky News on Thursday.

Asked to be specific, Abetz said: “Polyamory, clearly – well, polyamory is one of those. That has now been promoted not only to Australian Senate committees but it has been commented on and pursued in Holland, in Scandinavia, in the United States, so let’s not be under any illusion that once you start unpicking the definition of marriage there will be other consequences.”

The interviewer, Kieran Gilbert, said: “So you’re suggesting that it would be legalising multiple spouses, is that what you’re suggesting, that that’s a prospect?”

Abetz replied: “No, no, no, no; look, don’t try and verbal me. What I said was that if you undo the definition you then open up a Pandora’s box and if you say that it is no longer an instiution [sic] between one man and one woman you then do open up a Pandora’s box.

“Indeed, dissenting judges in the United States and elsewhere have referred to that possibility, so what I am saying is not something new. It is something that many people around the world have said and we have in fact witnessed it.”

He also suggested it was the “Asian century”, yet Asian countries had not embraced same-sex marriage.

When Gilbert questioned the comparison, given Australia also differed from many Asian countries on the issue of capital punishment, Abetz accused the media of championing the cause of same-sex marriage rather than allowing “a proper, appropriate debate”.

Abetz added: “I detect that the Australian people are getting a bit sick and tired of the one-way traffic that is being promoted by Australia’s media.”

So much fail, in so little airtime.

A) Poly people did not insert themselves into the 2012 Senate Committee on Marriage Equality, Abetz, Cash and the other dude went and found polyamory and shoved it in there on their own.  The Australian’s coverage of poly news at that time (see the Poly In The News link above) was solely to get Polyamory into the political consciousness so that they had a good reason to dissent against marriage equality at the time other than writing “we’re queerphobic bigots” 100 times.

B) Poly people aren’t clamouring for marriage recognition, and are unlikely to do so any time soon.  Even if they did, I don’t understand why this would be a good reason to deny people in monogamous committed same-sex relationships to marry now.  You could always put in a thing about monogamy if that really concerns you.

C) Abetz really is a complete cock weasel. Actually that might not be fair, a cock weasel actually sounds like a cool idea.  Abetz is a complete and utter arsehat.

* An aside – the Family Law Act of something something, actually recognises multiple relationships in the event of a divorce or separation – so that those couples that have separated but cannot divorce (ie one is missing, offshore and can’t be contacted, etc), any future relationship that they are in can still be recognised for the purposes of separation of that subsequent relationship.  So the fact that I am legally married AND living with another partner, means that the Family Law Act probably already recognises my two relationships… isn’t that nice.

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I have one of those faces…

You might know the one – the one where people tell you things, or if you’re on the other side, the one you look at and you think, “I know, I can tell them things and it’ll all be cool”.

I have had some fascinating conversations and experiences because of the face I carry with me (no, not in my pocket, that’d be gross).  Recently I’ve been practicing the “leave me alone, I’m busy” look so I am approached less often, but when I was younger I would have all sorts of people approach me to tell me things.

I was 15 and sitting the CES (employment) office, trying to get some part-time work.  I was minding my own business in the waiting room when one of the employees walked past me, stopped, asked if I was ok, and then launched into a personal story that I was embarrassed to hear.  I can’t remember much about it now, other than it involved tights, but it was strange, and not the first or last time I had random things confided in me.

I once asked a partner why he thought people told me things.  He said that he thought it was because I looked non-judgmental, approachable, and kind.  I judge, of course, as everyone else does, but apparently back then I didn’t look like I would.  When I asked his girlfriend why I was never approached in bars (which wasn’t entirely a bad thing), she told me that I always look like I’m really busy, and shouldn’t be interrupted.

I think I’ve been focusing on the “leave me alone” look for a while – I treasure being left alone.  Also, being fat and older now means I’m almost invisible, which is good too.

Over 10 years ago now I was in Crown for a function dinner (part of a conference I was at), and as I had arrived early I sat in a random bar and started reading my book (I had my work bag with me).  A woman sat down on the table I was on and introduced herself.  She asked me if I would join her in playing a trick on her friends by pretending to be her girlfriend.  I didn’t have anything to do for the next 45 minutes or so, so joined her in walking over to the table of friends.  We sat down, she introduced me, and the conversation continued, though a bit awkwardly.  Eventually this woman, whose name I have completely forgotten, told her friends that her name was in fact [insert male name I’ve forgotten too] here and that I was not actually her girlfriend.  This was about the same time I had to leave to go to the dinner, and I never did find out what happened to her.

I have/had that face that meant that this woman felt that she could trust me to joke about with her friends, in whichever way she wanted to do so.

I’ve had my share of strange people on public transport who want to tell me their life story, or inquire if my sisters are unmarried once they discover that I’m married and most of the time I don’t mind (well except for the guys who think that hitting on my sisters is a good idea).  There really are times when I just want to be left alone to read my book, think my thoughts or plan the eventually take over of the world.

I don’t mind engaging with general strangers provided I can opt out if necessary, generally that’s where problems arise, social contracts don’t often let you opt out.  There is a certain appeal to the idea of being a little old lady who talks to strangers though.

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