Grating

Over the past week, I took part in one of those Facebook things where someone tags you and you have to post for seven days about what you’re grateful about, and each day tag someone else to participate. I rarely pay much attention to anything on Facebook except LOL cats and how many likes my posts get, but I decided to take on the grateful challenge because it seemed a lot less questionable than many others I’ve received.

funny facebook shares

I think the point of the grateful challenge is to make us stop and think about our lives, and how much we have to be thankful for. Either that or there is no actual point and it’s just a ploy to get us to keep us interested in Facebook, because they make around $10 per user per year from advertising in the US alone.  But I can’t believe that. I mean look at Mark Zuckerberg’s honest, baby face:

zuckerberg

Anyway, I digress. Over seven days, I had to write down three things for which I am grateful. You probably think that someone who has (to this point at least) survived cancer, would have a heart full of gratefulness and an unlimited number of meaningful things to share and make all my Facebook friends misty-eyed and full of admiration at my pluck, but it just isn’t so. Yes, I am grateful to be alive, and that was in fact the first thing I posted. But most days I get shitted off by something or someone and I wish I had more of something (free time, money, chocolate) than I do. I feel impatient and tired and annoyed at the world at some point pretty regularly. I feel sad about having cancer hanging over me. I forget to be grateful about the good stuff because the bad stuff sometimes seems so much bigger and louder and in my face. Cancer has not made me saintly; I have not risen above it all.

The only light-bulb moment I had during the whole awful process was the giant dome-shaped, circular one in the operating theatre just before they chopped my right breast off.  Cancer is bullshit! I am happy to be alive and most definitely grateful that in the random lottery of life I was one of the ones for whom the treatment has so far worked. But there is plenty of stuff about which I am not happy, and that is most definitely no cause for gratefulness. In the spirit of this, I present you my list of the top 10 things that have recently given me the shits:

  1. People who say ‘so you’re cured?’. Firstly, in case you missed the fucking memo people, there is no cure for cancer. Secondly, we are casual acquaintances. What if I’m honest and answer no? How are you going to wrap up that awkward little conversation?
  2. Telstra. Two years ago they gave our home phone number and address to someone else, who is most likely actually not a real person. All the evidence points to this person not being real, but to this day if you look up his name on Telstra white pages, there he’ll be living in our house and using our telephone number. Oh and we haven’t been Telstra clients for almost six years, which just adds to the total fuckwittery of the whole situation.
  3. People in my workplace who say ‘that’s not in my job description’. Well, dealing with lazy-arsed pen pushers is not in my job description either, but here I am talking to you about what’s not in your job description.
  4. Random pains that have no explanation. Sudden stabbing pain to the abdomen that happens once for six minutes and then never returns, I’m talking to you! Thanks for introducing the idea of secondary liver cancer into my head, mentally going over that pretty much constantly for three weeks was fun.
  5. Christopher Pyne.Pyne
  6. And whilst I’m on a political tangent, Senator Eric Abetz. In case you missed it, this clueless arsehole (who incidentally speaks like Reverend Lovejoy from The Simpsons) said on national television: “I think the studies, and I think they date back from the 1950s, assert that there is a link between abortion and breast cancer.” And I think there’s a link between Liberal politicians and being dumb as dog shit, but I guess I don’t have any solid research from the 1950’s to back that up.
  7. Reality makeover shows where people say things like ‘I want to go back to being the man she married’. You are the man she married, just older and fatter.
  8. The fact that I paid the best part of $200 for some fancy shoes that are supposed to be ‘luxuriously comfortable’ but have given me blisters. If anyone who works at Zeira is reading this, I will accept multiple free pairs of shoes as compensation for my pain and suffering.
  9. My ridiculously dry skin. Thanks to a combination of the anti-cancer drugs I’m on and being a dried up old bag, my skin is so dry that it hurts, and even the most gentle, natural moisturisers just make it hurt more. I am considering covering myself in goose fat for the remainder of winter, but I don’t want the expectation that I’ll then swim the English Channel hanging over me.
  10. The word ‘amazeballs’. How is it pronounced? Is it ‘amaze – balls’? ‘Am-aze-eh-balls’? ‘Ama – zeballs’? Or ‘I’m a pretentious hipster twat’? In November last year amazeballs was added to the Dictionary of the Most Annoying Words in the English Language, where it was defined as “an exclamation inviting someone to hit you.”

So there it is, my shit list as at Wednesday, 20 August. Feel free to add your shit list as a comment, or even better, on the Boob in a Box Facebook page. I’d be ever so grateful.

The Gift That Keeps on Giving

Last week will be filed away under S for shithouse. Firstly, our dishwasher went on strike and we are now up to day seven of waiting for a part to see if it can be fixed. I know no-one likes washing up but I have a thing about water with stuff floating in it (gag) so every evening I loudly lament the loss of Mr Dishlex as my husband stoically does the dishes.

Then I had to have my beloved old cat euthanised. At the time, cremation was offered as an option but I decided I wanted him buried in our garden. Aforementioned stoic husband then had to dig the grave, which flared up a disc injury in his back and he was rendered unable to do much except lie on the floor in agony for the next 48 hours. I have also come to regret the decision to bury Cosmo, as every time I look out into the back garden and see the little patch of bare earth, I think about awful things like decomposition. I have also several times thought I’ve heard him meowing, only to realise it’s a bird or something on tv or my walking dead cat who’s clawed his way out of the earth and wants to know why one of the dogs is now using his heated bed.

cat-behind-dog

The worst of the week is probably going to be the worst of many weeks to come. When the completion of my menopause was confirmed, my hormone therapy drug was changed. Because my sort of breast cancer was hormonally-driven, I need to take a drug which helps prevent further hormonally-based tumours developing in my body. Before and during menopause, the drug I was given was called Tamoxifen, which my body dealt with pretty well. It made me nauseous, but I could avoid that by taking it just before bed, so my year on Tamoxifen was pretty much a breeze. Five weeks ago I was switched to the drug of choice for post-menopausal dried up old bats such as my good self. The proper name for my new drug is Anastrozole, but I like to call it A Complete Fucking Nightmare.

The main side effect of Anastrozole is joint and bone pain. I am a bit of an old hand with it, as it was my main side effect from chemo. I had 16 weeks of pain that got so bad that it couldn’t be controlled by any of the many anti-inflammatories and painkillers the doctors tried, and by the end I would just lie in bed and cry. I dealt with the pain knowing that as soon as I stopped chemo, it would go away, which it did. Five weeks in on Anastrozole and the joint pain is severe, especially at night. During the last week, every night I’ve had a bit of a quiet cry at bedtime because the pain in my knees, hands and wrists is just constant. The kicker in all of this is that I know the pain will stop when I stop taking the Anastrozole. And when is that, I hear you ask? July, 2019.

Yep, I have to take Anastrozole for five years, and I’m at the five week mark right now and wondering how the hell I’m going to do it. I know the next question you have, because it was my next question – can I stop taking it? Well of course I can, no-one is making me take it. I can choose not to take it and go back to nice gentle Tamoxifen instead, but recent research shows that taking Anastrozole instead of Tamoxifen almost halves the likelihood of the breast cancer returning anywhere in the body and increases the chances of survival by nearly a third. When discussed in theory, these numbers pretty impressive. Let me tell you that when you are reading it and applying it to yourself and your chances of survival, of being alive and seeing your husband graduate from university and your kid lose his first tooth, it becomes all you need to know. Prescription and five years worth of repeats, thank you very much doctor.

Because cancer is apparently the gift that just keeps on giving, the bone pain is actually a good thing. A 2008 British study suggests that patients who experience joint pain while taking Anastrozole were less likely to have the breast cancer recur. So basically I choose to take Anastrozole because it may help me stay alive, but it gives me severe bone pain which will affect my quality of life, but the bone pain indicates a reduced risk of the cancer coming so in fact the pain may motivate me to keep taking it? Holy mindfuck Batman! I’m now investigating ways of controlling and minimising the bone pain, including acupuncture, massage, epsom salt baths, krill oil, green lip mussel extract, turmeric and crack cocaine. Not necessarily in that order.

But, in spite of the shit sandwich served with a side of dead cat, good things have also happened, so I might have to cross-reference this week under A for all right. First, this blog was mentioned twice by the fabulous Mrs Woog on the Woogsworld blog and Facebook page. I discovered – and literally yelled holy shit! when I did – that the incomparably talented Eden Riley has included my blog on her blogroll at Edenland, and then I got a lovely mention over at KiKi and Tea. Those mentions combined meant that there were more than 2,000 individual visits to this blog last week. Two thousand people from 12 countries. Seriously! Then, I got asked, on the basis of what I’ve written on this blog, to be the guest speaker at the major breast cancer fundraiser in my city during Breast Cancer Awareness month in October. On Monday 8 October 2012 I was told I had breast cancer, and on Wednesday, 8 October 2014 I will speak to a function room full of people about breast cancer. Holy mindfuck ON A STICK Batman!

Finally,  my favourite moment of the week has nothing to do with cancer or blogs or speaking gigs, and came from my boy (as it often does). Behold, what I believe to be the world’s best ever slogan for Book Week:

hugh book week

Look out Don Draper, there’s a new kid in town.

Goodbye Old Friend

My cat died this morning. He was 17 years old, and dementia had taken hold to the point where he had started going to the toilet anywhere and everywhere. He was constantly confused and meowing plaintively for food whilst sitting right in front of a full bowl of the good stuff. My friend Jules, who is a mobile vet, came to our house and he passed away peacefully in my arms. We buried him in the backyard, with a big rock over the top of the grave to prevent his two sparring partners, our dogs, from facilitating a feline re-enactment of The Walking Dead. zombie cat

God, I am so sad. I keep imaging the feeling of him brushing against my leg, and as I move around the kitchen my brain keeps reminding me to look out for him underfoot. I got Cosmo when he was 7 weeks old, the day after I moved into the house I’d just bought in 1997. It was the first time I’d ever lived alone, but I wasn’t alone for long because as soon as I bought home that ball of fluff who purred as loud as a jet engine, we were a pair. For seven years he was my only housemate. He slept on my bed every night, and sat waiting at the front gate for me to come home from work every afternoon. He was an enormous cat in his prime – as tall as my knee and weighing in at 10kgs – but he was more a lover than a fighter or hunter. He was a fixture in our little neck of the woods, where he wandered through gardens and climbed trees – everyone knew his name and the little boy across the road wanted to take Cosmo to ‘Pets to School’ day because Cosmo was the closest thing he had to a pet of his own. One day my next door neighbour found him curled up asleep on her bed, after he’d climbed in through the window. I was horrified when she came to tell me, and made straight for her house to retrieve him, but she told me to let him sleep and she’d send him home when he awoke.

cosmo

When I met Dave, Cosmo’s life remained much the same, with just some minor adjustments to how much room he was allowed on our bed. The first and only time Cosmo ever hunted was on our wedding day. We were lying in bed on that Saturday morning when Cosmo appeared in the bedroom and dropped a dead Indian mynah on the floor. I decided it was a good omen (for us, not the bird) and the day did indeed go off without a hitch. After the wedding we moved house, to a much busier neighbourhood, so Dave built Cosmo a palatial cat playground where he could lie out in the sun and watch the world go by, but couldn’t wander into traffic or the jaws of the neighbours’ gigantic dogs. We then extended our pet family to include a tiny puppy called Myf, who soon had our gigantic cat just where she wanted him.

myfandmosmall

Then came Roy, the stray from the pound who’d been around the block enough times to realise that if he got along with the cat, everything would be just fine.

The three stooges, now two.

The three furry siblings.

When I was six months pregnant with Hugh, Cosmo got sick and was diagnosed with feline immunodeficiency virus (FIV) which is basically a cat version of HIV. I was told to expect the worst, but Cosmo bounced back after treatment and was symptom free for more than six years. During this time, he was also bitten by a paralysis tick and spent four days in intensive care, but he still has a few of his nine lives left, so he kicked on from that too.

When you have a 17 year old cat with FIV, you know that the end of the line can’t be too far away. My hope was that he’d do as my parents elderly cat did, and stroll into the lounge room, curl up in the middle of the rug, and fall quietly into a sleep from which he didn’t wake. But sadly that didn’t happen, and so I was forced to make the dreaded call. I have cried a lot, and I will probably cry a lot more; today I said goodbye to a dear companion and an unquestioning friend.

Until one has loved an animal a part of one's soul remains unawakened. - Anatole France

Until one has loved an animal a part of one’s soul remains unawakened. – Anatole France

Rest in peace my beautiful Cosmo cat. My loud-purring, sometimes cranky, always arse-kicking mate. You were so very loved.

 

My dear friend Jules, from Creature Comforts Mobile Vets helped Cosmo to have such a dignified and peaceful death, and I will forever be grateful for her gentleness and compassion. If you live in Toowoomba or surrounds,  I cannot recommend Jules highly enough. She is a great vet and a wonderful human being.

Scars

I have a lot of physical scars. There is a 5cm long one above my lip, which is the result of an incident involving a chocolate topping bottle about 20 years ago. No, I wasn’t glassed in a late-night brawl at my local Cold Rock, but rather the victim of  my housemate’s careless placement of a glass bottle on the edge of a high shelf.  The bottle fell, smashed and a piece of glass flew up into my face. The glass was so sharp that I didn’t feel it cut; the first I knew of it was when I noticed my blood pouring all over the floor. It was stitched up by a gorgeous young doctor in the local emergency department, who took great care to make sure that my tantalisingly named vermillion border was stitched back together perfectly so that my scar would eventually become barely noticeable. I was in my early 20s when it happened, so dealing with a facial scar, no matter how minor, was sort of a big deal. One of the first ‘medical’ treatments I adhered to as an adult was the application of Vitamin E oil to that scar. Morning and night, day after day. I really didn’t want a visible scar. If only I’d known what lay ahead.

vermillion borderlip scarlip scar 2

When I pull the cat’s bum face to signify my displeasure with something, or whistle, or smoke a Cuban the scar disappears. I do at least one of those things regularly each day.

Also, I am determined to bring the term ‘oral commissures’ into everyday use. I’d appreciate your help.

I have scars on my left knee from two surgeries – one to fix a cartilage torn at the gym (no shit, that seriously happened, I went to the gym!), and one to fix some serious damage I did falling down the stairs whilst moving house the week after we got married. You’ll be pleased to know that the box of cheap, mismatched glassware I was carrying was unscathed. The surgeon who did the second knee operation was at pains to tell me that he would do his best to reuse the pre-existing scars to minimise further scarring. I’m not sure how he kept a straight face during that conversation considering my knees are so wide and gnarly they resemble a pair of Galapagos turtles retracted into their shells.

My kneecaps in their natural habitat.

My kneecaps in their natural habitat.

I have a tiny little white scar which belies the enormity of what came out of it – the scar from my boy’s caesarean birth, where somehow they managed to pull a 4.4kg baby out of a slot that’s only about 10cms long. I suppose one only need compare it to the slot that a baby born ‘naturally’ comes out to imagine how the laws of physics can be defied. When I saw the size of my newborn’s pumpkinesque head, I was quite pleased that those laws were defied by my stomach rather than my vagina.

Then of course I have the massive great scar where my right breast used to be. I have pondered long and hard about posting a photo of it. I would never in a million years have ever even contemplated posting a topless photo of myself before my mastectomy – mainly because to see the full length of the D cup boobs of a 40 something woman she’d have to be totally naked, not just topless. But I think that the whole process of cancer – mammograms, ultrasounds, biopsies, mastectomy, chemotherapy, radiation tattooing and radiation – has caused me to see the place where my boob used to be as almost otherly; it’s like I’m looking at an image of someone else. In my mind’s eye, my chest is complete with two breasts, so when I catch a glimpse of myself naked in the mirror, I am always shocked to see what it looks like. Almost two years on and it’s still a surprise to see that my breast isn’t there, and my skin is mottled brown from the radiation burns. The entire scar, plus the adjoining underarm where the lymph nodes were removed, are numb, which means that every night, when I faithfully apply Vitamin E so that my scar remains soft, I can’t actually feel my hand touching my own skin. Maybe that numbness is what causes the mental separation, and is perhaps what allows me to show you this:

mastectomy

Things I had hoped to show in this photo – mastectomy scar, radiation tattoos (they look like tiny blue moles), radiation burns on chest and throat, scar from portacath (on left shoulder). Things that are also in this photo: giant bingo wing.

It’s shocking, I know. It still shocks me every single time. I’ve never been particularly slim, taut or terrific, and I am now a middle-aged woman, but the sight of that scar takes my mind to places that it doesn’t want to go. Clothed, with my boob out of its box and in my bra, I look like me. That image in the mirror matches the image of me I hold in my head. Naked, with my boob back in its box, the image in the mirror doesn’t match what’s in my head, and I feel uncomfortable and jittery. I don’t hate my body, I am actually amazed and proud that it stood up to the beating that chemo and radiation handed out.  It’s just that my body doesn’t look like my mind thinks it should. I grew my boobs at age 12, so my brain had 30 years of status quo before everything changed. Maybe one day it will all click and there will be no surprise when my bra comes off at shower time. Either that or I’ll grow old (a thought that seriously excites me – imagine having the chance to grow old!!), dementia will kick in and I’ll forget that I ever had two boobs.

The physical scars heal with time; the scabs fall off, the itching stops and the pain subsides. But the emotional scars are still livid, they weep and itch and pain. The only salve is a mixture of time and love, and I am thankful every single fucking day that I have both. This blog is also something that soothes my wounds, especially the comments from you guys, my readers, whose words show me that I am not alone in this. Sometimes when I’m writing particularly hard stuff, I imagine you sitting at your computer, reading along and nodding or crying or sighing or laughing. That sense of sharing is going to help me heal, and I hope it will help you too, no matter what scars you bear.

While I was Busy having Cancer

I have always had a pretty healthy sense of self, and will admit to being very self-centred at times. I’m going to blame birth order – I am the youngest by 10 years and the only girl, so my overblown sense of my own importance is totally my parents’ fault.

all about me meme

My self-centredness grew exponentially when I was diagnosed with breast cancer. Cancer patients are selfish because they have to be to survive. When you get the diagnosis, your world becomes incredibly small, and when you realise you are in the fight for your life, you curl yourself up into the metaphorical foetal position, and the rest of the world becomes a buzz around you – you are aware of the noise but don’t have the capacity to decipher what any of it means. You become selfish because it’s the only way you can cope with what you are facing, particularly when the diagnosis is new and you are being confronted with so many things you wish you never, ever saw, heard, felt or knew. At some point, you come to terms with the new normal, the selfishness is no longer essential for coping, and you realise that while you were focussed on the nasty business of cancer, the people around you were having lives too.

I am working on a blog post about how cancer affects those close to the person diagnosed. As part of this process, I asked friends and family to tell me about how they were affected by my cancer. Self-centred still! I was expecting a sentence or two from each person, but what I got from my dear friend Erica shook me to the core. While I was busy having cancer, my friend was struggling too, but I had absolutely no idea how much. My pain, both physical and emotional, was so all-consuming that my friend’s pain was virtually invisible to me. I am going to share her words here, even though she gives me far too much credit – I don’t think I deserve her generosity of spirit, but this is her truth and I feel honoured to share it.

When a friend that means the world to you asks for your help with something, you don’t hesitate in saying yes, especially when you have been faced with losing said friend to breast cancer. However, when Julie asked me to write for her blog I had to think twice for a few reasons, a) I don’t often read the blog because it always has me in tears, b) can I match the standard she’s set?, and c) it’s daunting to revisit those early days in Julie’s diagnosis.

I guess I should start at the beginning. Our boys are days apart in age – I’d met Julie at antenatal classes. We spent our maternity leave having cups of coffee discussing and laughing at the differences in our boys. One was talking first and the other walking first. We even came up with the idea that they could forma boy band. It was fantastic to have someone so close to share the good, the bad and the ugly.

Fast forward 20 years and you can imagine a similar photo but it wouldn't be milk in the bottles.

Fast forward 20 years and you can imagine a similar photo but it wouldn’t be milk in the bottles.

When our boys were three, my family moved from Queensland to NSW and although we could no longer catch up for coffee, I knew I could call on Julie when I needed her. And I did need her. I was pregnant with my second child and suffering from antenatal depression. Like Julie I had trouble staying pregnant, but at long last we were to be blessed with another baby. However my mind wasn’t as happy as it should have been. I hate to say it but my son wore the brunt of my depression. He was home with me all day, each day and I couldn’t hide it from him (or my husband).  It was (and still is) the toughest thing I have had to face. Things didn’t improve once our beautiful girl arrived four weeks early. My antenatal depression turned into postnatal depression (PND).

Only days after coming home from hospital, Julie called me with the ‘news’. Holy shit! I was in shock, after all Julie was the strong one. I was absolutely gutted. I was going through hell. They couldn’t take her away from me. This wasn’t fair. Those are almost exactly the thoughts I had after getting off the phone. It was the most selfish moment, yet it was all I could do not to fall into that familiar dark hole. I remember telling my husband and the look on his face. He was scared for both Julie and her family but also for me. “How is she going to cope with this?”  

It affected my moods (it didn’t take much anyhow), it affected my sleep (on top of the needs of a newborn baby), it affected the way I felt about my children and husband. My friend was faced with death and leaving her family and I had to make the most of mine. I really struggled with that. I couldn’t always be there for my family like I wanted to be. My PND was so all-consuming. I did my best and mostly showed them my love through cooking and feeding them. I made the most of little moments, like my son feeding his sister a bottle for the first time and those first smiles from her. Or that moment I walked into the lounge and saw both kids on my husband’s lap squashed into a single arm-chair and that joyful, self-satisfied look on his face.

I couldn’t get my head around what Julie must have been going through. Or what her family was going through. I had been in the dark hole so often that it was more familiar for me than them. I was grateful that my family wasn’t going through the same ordeal. I don’t think my son could have coped after all I had put him through with my PND. His mother had already betrayed him with outbursts of anger and pushing him away so she could hide in that dark hole once again. I felt overwhelming guilt that it was my friend that was sick, that I couldn’t always appreciate my family and those I loved most and that I still needed call on Julie with my problems. She had her own problems.

We moved back to Queensland while Julie was still having chemotherapy. I felt that I had to explain to my son before seeing them, why Hugh’s mum didn’t have any hair. How the hell do I do that? How did they explain it to Hugh? This horrible disease affects everyone. I simplified it, “She is very sick and the medicine for it made her hair fall out”. In his innocence, he accepted my explanation and saw no difference to the Julie he’d seen 12 months prior. I took his lead and found that he had the right attitude. Who says you can’t learn from a 4 year old?

As time went by both Julie and I travelled our journeys and we both have seemingly come out the other side. Julie is thankfully still with us to give us a regular kick up the bum and reality check with a quick word and bossy tone. I am learning to cope with PND with medication, meditation and the fabulous support of my husband and family. When I see our boys play together I am thankful that Julie and I met and that our families are there for one another. Life wouldn’t be the same without us being there for each other. I have a great love and appreciation for Julie. Until now I don’t think I’ve ever put it in words to her. Julie you are my rock, my mentor, you are what I aspire to be.

Antenatal and postnatal depression affect a significant number of women in Australia – they are real, severe and sometimes prolonged illnesses which need diagnosis and treatment. The Blackdog Institute provides information and resources for those who are affected. Please, if you believe you may be affected, contact the Blackdog Institute.

When Blog Imitates Blog

They say that imitation is the greatest form of flattery, so instead of saying I stole the idea for this post from Woogsworld, let’s say that I’m giving one of my blogging gurus a good ole flattering. Lie back and think of England Mrs Woog, while I share the A-Z of Boob in a Box.

A: What have you always wanted to do, but have never had the guts?

Go on a tv quiz show. But my fear of getting the $500 question wrong and having Eddie Maguire look at me pityingly means it ain’t ever gonna happen.

B: Beards – yes or no?

Hipster Ned Kelly – no. Prison pussy – no. Year 10 Science teacher – yep.

C: What is your favourite chocolate ?

Whichever one is currently in my gob. Made these brownies at 8pm last night to satisfy a craving, very highly recommended.

D: Do you think it’s telling that you wrote a blog post about your dog  well before you got around to writing one about your kid or your husband?

I refuse to answer that on the grounds that I may incriminate myself. Also:

roy photo

E: What is your favourite event of the year?

Christmas. Dave and I normally host assorted relatives, friends and the occasional random for Christmas lunch. We spend weeks planning the menu, draw up a run sheet for the lead-in days, and then make the magic happen. We even did it whilst I was in the middle of chemo, where I made up for not being allowed to eat prawns or drink cocktails by consuming my own body weight in duck fat roasted potatoes.

F: You turn forty-five  next month. How did that happen?

Well it started with my mother telling a doctor in early 1969 that if it wasn’t so ridiculous she’d think she was pregnant. More recently it’s been enabled by modern medicine – if I’d been born even ten years earlier I may not be alive today because the treatment I had for my breast cancer is that new.

G: Do you have any special gifts ?

No, but I like receiving gifts, does that count?

H: What does the word home  mean to you?

It has a couple of meanings. It means the place where my boys are, wherever that may be. Deep down it also means my parents’ house – they have lived in the same place for the last 50+ years, so there are a lot of memories and a huge amount of comfort in that.

I: What’s the first thing you’d do if you developed the superpower of invisibility ?

Enquire as to why I didn’t get x-ray vision, which is the superpower I really want. Imagine me travelling the world helping parents see what toy was inside Kinder Surprises so that they could avoid the really shit ones.

i-opened-a-kinder-surprise-it-was-a-puzzle-thumb

J:  You have a personal jumper  rule. Tell us more.

No woollen jumpers allowed until 1 June. Pull out the wool too early, and you’ll be freezing your butt off by mid-July. Acclimatisation is the key.

K: You have a lot of friends whose names start with K. Have you ever wondered why?

Maybe people with names starting with K are naturally attracted to nutters who have jumper rules?

L: What has been your biggest life lesson ?

I have two: 1. Good things sometimes come to those who wait. 2. Waiting is really shit and note the use of the word sometimes.

M: If you had a million  dollars, what would you do?

First this:

Dr Evil

Then I would take my family and go travelling until the money ran out.

N: Do you have a favourite number ?

No, but my son does. He loves the number 8 because it looks like a race track. I think I will always remember that about him, even when he’s a man with a beard and kids of his own.

O: What’s your favourite thing to do online ?

Google crazy shit for this blog like ‘fart with confidence’ and ‘cancer is funny’. When I was in high school all we had was the library with a card catalogue, looking up swear words in the dictionary and snickering at the name of Funk and Wagnalls.

P: Which four people, living or dead, would you invite to dinner and why?

George Clooney – for decoration and conversation … and three other people who wouldn’t have a problem with me ignoring them all night.

Q: What sort of questions would you like to ask the readers of this blog?

Who are you? How are you? What would you like me to write about in future?

R: What do you do to relax ?

Watch television and play Words with Friends, usually simultaneously. At the moment I am enjoying The Time of Our Lives and Dirty Laundry Live on ABC. Pretty much all other free to air tv shits me to tears. Apple TV and Netflix get a pounding at our place. If you haven’t seen House of Cards or Orange is the New Black, do yourself a favour.

S: How long do you spend writing each blog post?

It varies, but the ones I look back on and feel proudest of are the ones that were written quickly – straight from the heart I guess.

T: How often do you succumb to temptation ?

I have no willpower whatsoever, so succumbing is my status quo.

U: What’s your idea of Utopia ?

No racists, homophobes or Tony Abbott supporters (same thing really) allowed. Living somewhere warm, where the smartest people are teachers and women don’t refer to their husbands as ‘babysitting’ their own children. Cocktail hour is mandatory and CANCER DOES NOT EXIST.

V: What is your favourite remake version of a song?

W: Which women do you admire most?

My mother – hardest working, least complaining woman ever – a true role model. Jane Caro – a tireless advocate for public education. And all my female friends for so many reasons.

X: How do you feel about X-rays ?

Hate them. In cancer world it’s called scanxiety. Any test, even if it’s nothing to do with cancer, causes massive amounts of stress and sometimes requires a dose of mother’s little helper to get through.

Y: What are the best and worst things about you ?

Best – I can usually see the funny side of things. Worst – I am lazy.

Z: What is something that you always do with zeal ?

Read comments from my blog readers. See Q above.

 

Full Stop

I found out this morning that I am officially postmenopausal. I had a phone call from my oncologist to tell me, in his words, ‘the good news’. I had a blood test last week to see if my menopause is permanent. Chemo for breast cancer causes menopausal symptoms in most women, but sometimes the ovaries go into hibernation rather than being killed off completely. But in my case, the menopause is permanent and complete. It’s good news in a cancer sense, because it means that I can be put on a drug called Anastrozole which works to prevent my sort of breast cancer by inhibiting the synthesis of oestrogen and therefore reducing the chance of recurrence.

Whilst I’m sure my oncologist got a kick out of the novelty of saying ‘good news’ to one of his patients, the information has left me flatter than the right side of my chest. I am 44, and I am postmenopausal. I am dried up, empty and barren. I have to have my bone density monitored annually because I am at risk of osteoporosis. My skin has become crepey and slack, and is horrendously dry. I have taken to slathering myself in oil, which makes my old lady flannelette pyjamas stick to my skin. It is only a matter of time before I am on the professional bingo circuit.

bingo

I guess the hardest thing about knowing that I am officially postmenopausal is the finality of it. It’s not like I miss having my period, but after years of listening to the monthly rhythm of my body, the silence is deafening. When I was in my late teens and 20s the rhythm was regulated by the pill with the dreaded fear of pregnancy lurking around every corner. It was quite magical how those white pills would bring on that regular reassurance that the pill was doing its thing. When I was in my early 30s I wanted to get pregnant but was single, so spent many months in hyper-awareness of those lovely eggs slipping away. Then, when I finally met my very own Richie Cunningham, I found out that I could get pregnant very easily, but not stay pregnant, and so began the obsessive tracking and charting and analysis of the rhythm, in constant search for an explanation and a solution. Finally, one of my rapidly-dwindling egg supply met a wonderful fate, and that embryo burrowed deep inside, staying there for the 9 month long-haul.

Five months after Hugh was born my period came back, I remember feeling so cheated because I was still breastfeeding and everyone knows that keeps your period away. But no, my body was determined to start up its rhythm again, and that made me very hopeful that we’d be able to get pregnant again. We were, but I just couldn’t stay pregnant, and after months and years of heartache and tests and injections and inseminations and all sorts of dreadful arrhythmic interventions, we called it quits. At that point my body seemed to breathe a sigh of relief, and went back to its happy, regular rhythm. It mocked me, teased me, sometimes tortured me. Every month, without fail, there was the rhythm, the regular slow beat of life that seemed to enable every other woman in the universe to get pregnant and stay pregnant. Except me.

infertility meme

Being diagnosed with breast cancer certainly underlined our decision to stop trying for a second child. My cancer was hormonally-driven, and therefore the treatments would pretty much decimate my reproductive system. I knew this, and I had my last period during my first week of chemo. As the months went by, I still wondered if it would come back. It was a possibility, albeit a remote one, but the whole cancer thing had taught me not to trust my body.

Today, I am officially out of the running. I know I was never going to be a 44 year old one-breasted recent cancer survivor who miraculously gets pregnant and has a healthy baby, but in some deep, dark, primal recess of my brain, it was still a possibility. Now, I know there is no possibility, and that has made me quite melancholy. I know I have so much to be thankful for – that I am alive, that I continue to be cancer-free, that I am a middle-class white woman in a western country. But I suspect the sadness will prevail for a little while, so I will ease my pain by looking through photos that bring into sharp, exquisite focus that one, magnificent time when the rhythm of my body created absolute perfection. Baby Hugh

Love is a Verb

My year 3 teacher was Mr Freyling. It was 1977, and Mr Freyling was a devotee of the body shirt, which was the male fashion must-have of the time.

Apparently people over 30 were universally untrustworthy in the 1970s.

Giant collar and tight, stretch polyester. Perfect with a high-waisted slack. (And I have no idea what that slogan is all about – anyone else?)

The fact that Mr Freyling was a rather rotund bloke did not stop him wearing body shirts, but because it was Queensland and despite it being 40 degrees in the shade in summer, the notion that schools might be air-conditioned was laughable (and for the most part still is), he teamed his body shirts with walk shorts, knee-high socks and brown leather lace-up shoes. As well as being portly, Mr Freyling was also a rather hirsute bloke, and had nose hair that he could have plaited, hippie style. When he got angry (which was a lot, losing your shit was apparently a legitimate teaching method in the 1970s) his nostrils would flare and the hair would flutter madly with every rapid-fire inhale and exhale.

Apart from being a stylish dresser who was a bit lax with his personal grooming, Mr Freyling was a stickler for grammar. He had little rhymes and sayings and mnemonics for just about every grammatical possibility, many of which still stick with me today.

Adjectives tell us: what sort of, how many, how much and which – which had a catchy clapping rhythm that accompanied it (I suspect Mr Freyling had recently seen a production of the musical Hair)

Adverbs tell us: how when where or why an action is done – this one had actions which would have Mr Freyling summarily dismissed these days – let’s just say that the ‘how’ part involved doing an impersonation of a native American and leave it at that.

Apostrophes show something’s missing, or the owner’s possession – this one was done as a chant with wild gesticulations symbolising the apostrophes. Usually resulted in someone accidentally getting smacked in the head and Mr Freyling telling them to ‘stop sooking’.

Verbs are doing words, they express states or actions – Mr Freyling was obviously losing interest by this point as there was no clapping or actions, just this phrase repeated over and over while he prowled around the classroom, nose hair flowing in the breeze.

Love is a word that is used an awful lot, but I suspect that many people fail to realise that it’s a verb. It’s very easy to say you love someone, but for there to be actual meaning behind the sentiment, there needs to be action. Verbs are doing words.

I am married to someone who doesn’t use the word ‘love’ very much, but whose actions often typify the word. When we met I was a crazy cat lady, and when we decided to move in together the aforementioned crazy cat had to be catered for at our new digs which were near a busy road. So he spent several weekends building what can only be described as a cat palace, complete with a complex series of enclosed walkways, so that the cat could be outdoors without becoming domestic shorthair roadkill. The action was all the more meaningful because he and the cat, who is still kicking on 8 years later at the ripe old age of 17, do not love each other. Not one little bit.

Armed and dangerous.

Armed and dangerous.

When Hugh was born, Dave didn’t write a romantic card full of lovely sentiments, but he did spend 12 hours each day for six days in my hospital room. He helped me shower, looked after Hugh, and slept in the chair next to my bed when it was rest time. When I had the mastectomy, I was allowed home after only two days in hospital on the proviso that Dave could look after the drain in my wound. He knew I was terrified about what was happening to me and desperate to be home, so he learned from the nurses how to manage the drains, then proceeded to monitor the levels and change the bags as required for the next week. Because love is a verb, a doing word.

When I was ill, Dave wasn’t the only one showing me that love is a verb. Various friends took Hugh for playdates and sleepovers and spoiled him rotten. Other friends took days off work to come to chemo with me, sewed headscarves for me and made me beautiful resin bangles. My work colleagues held a fundraiser paid for us to have a family holiday at the beach. I received multiple emails and text messages every day checking how I was, keeping me in touch with my world, but demanding nothing of me. I am eternally grateful for all those people, those family members and friends, who knew that sometimes, love is a doing word where the doing just cannot be reciprocated because the person is focussed solely on staying alive.

I am often asked by people what should they say to a friend or family member who has cancer. My first response is always, what am I, cancer google? But seriously, it’s not what you say (although you should definitely avoid words like brave and inspirational) but rather what you do that matters. Stay in touch, make biscuits, send a magazine subscription, offer a foot massage, sit and listen. Always remember that love is a verb, and verbs are doing words.

I’m not sure if Mr Freyling is still alive and kicking – if he is he would be well into his 80s by now. In my mind, even if he’s getting around on a zimmer frame, he is still rocking a body shirt, walk shorts and walk socks, although he will have replaced the brown lace-ups with slippers. The nose hair will be even more prolific, and accompanied by some serious ear hair, which would be snowy white. He might be on Facebook to keep in touch with the grandkids, and I can imagine the nose hair fluttering at some of the grammatical atrocities committed daily on social media. Mr Freyling, this one’s for you:

apostrophe man

 

 

Solo

Last week, the second series of the Australian television drama The Time of Our Lives started on ABC. I’d seen on the promos that one of the plot lines for this series would be one of the lead characters dealing with finding out she has one of the BRCA gene mutations, which means she is at significant risk of developing breast cancer. I don’t have a BRCA mutation, but since I was launched unceremoniously into breast cancer world in 2012, I have learned far more than I ever wanted to know about the subject. Actually, I probably know enough to open up a theme park called Breast Cancer World, which would feature fun rides like emotional rollercoaster that once you get on you can never get off and the menopausal mood swings that go up very high and then down very low. Side show alley would include the House of Horrors, where chemo patients would roam about scaring unsuspecting small children with their hairlessness.

If this blog doesn't work out, I'm thinking of getting into graphic design.

If this blog doesn’t work out, I’m thinking of getting into graphic design.

The breast cancer plot line in The Time of Our Lives has so far been handled in a pretty accurate way, which makes me think at least one of the writers has some intimate experience with cancer. There was one line in last week’s episode that particularly struck a chord with me. The character of Bernadette goes alone to her appointment with the genetic counsellor, where she is told she carries one of the BRCA mutations. She then sits on this information for a few days, before blurting it out to her partner. He comments that he is concerned she went to the appointment unsupported, and doesn’t have to do it alone. Her response is very poignant, and I believe very true: ‘I am alone’.

When you are going through the process of diagnosis and treatment, and then living in the aftermath of cancer, there are many times when you have no choice but to be alone, and there are also just as many times when you have choices, but still choose to be on your own. The confirmation of my diagnosis came via a phone call, and that was the first indication to me that no matter how much support you have as someone with cancer, you are essentially alone. It is not a shared experience, it cannot be. The disease is in you, the type, stage and manifestation is particular to you, and it is trying to kill you. You will often be surrounded by others – people who you love, medical staff, strangers – but still be entirely alone. A large part of the cancer experience is mental and the internal monologue, which is a solo act performed for an audience of one – yourself – is relentless. Am I going to die? I probably am going to die. I don’t want to die. What will happen to my kids if I die? How will I die? Where will I die? I wonder what’s going to be served for morning tea at chemo today?

Tasty chemo morning tea.

For those playing along at home, the answer was ANZAC biscuits.

Radiation therapy was, for me, the ultimate experience in being alone. Every day for six weeks I would lie naked from the waist up, on a metal slab, perfectly still with my head and arms positioned in a moulded cradle made just for me, in a large, lead-lined room. The radiographers would sit in a separate room, away from the potentially deadly ionising radiation, watching via closed circuit tv as the machine rotated its way around my body. The fact that this was happening to me, and me alone, could not have been more apparent as it was during every one of those daily sessions. Every day I fought a battle in my head, watching the machine rotate around me, staring at the blank white walls, breathing in and out. All alone.

Now I’m in the first throes of being a cancer survivor, I am still alone. Please don’t mistake being alone for being lonely. I am not lonely, ever. I have all the love, and support and care that any person could ever hope for. But my soul lives alone in my body, which at any given moment could be betraying it. Right now my cancer could be re-generating in a tiny skerrick of tissue left behind when my breast was removed, or metastising itself in some other part of me like my lungs or my liver or my brain. I am alone with this knowledge, it is my individual truth. My oncologist knows it in theory, talks to me about my numbers and my percentages and my chances, but ultimately if my cancer comes back, it will come back to me, and me alone.

It took being a part of a group to make me realise that it wasn’t just me who felt that the real, nitty gritty experience of cancer is done alone. I’ve always struggled with a true definition of irony, but I think that having a conversation with your cancer support group where everyone agrees that cancer is, in essence experienced alone, probably fits the bill.

Cancer support group terms of reference.

Cancer support group terms of reference.

Of course there are parts of the cancer experience that could not be managed without the presence of others to soothe, comfort and reassure, and other parts where you crave shared experience when it is simply not possible. Sometimes you seek out opportunities to be alone, sometimes you accept being alone because there is no choice, and sometimes you wish that you were not so alone,  if even for a second. The French writer Sidonie-Gabrielle Colette sums it up far more poetically than I: “There are days when solitude is heady wine that intoxicates you, others when it is a bitter tonic, and still others when it is a poison that makes you beat your head against the wall”.

Bold in Her Breeches

If there’s ever a nuclear disaster,  there will be two things remaining once the mushroom cloud has settled – cockroaches and eyebrow hair. After my second chemotherapy treatment, all my body hair fell out pretty much instantaneously, except for about half my eyebrow hairs which held on through a further 12 weeks of chemotherapy. It was only those few hairs that stopped me from having to draw on my eyebrows. I have limited skills in the make-up application department, and was fearful that if left alone with an eyebrow pencil long enough, I would end up looking like a bald Joan Crawford.

Chemo can be so surprising.

Chemo can be so surprising.

I am an avid reader of a blog called Tune into Radio Carly, which is written by Carly Findlay who is an appearance activist, writer, speaker and tv presenter. Carly has a genetic skin condition called ichthyosis which causes her skin to be red and scaly, and therefore her appearance to be visibly different. I’ve learned so much from reading Carly’s blog over the past few years, and when I was bald, I got a tiny, brief insight into what it’s like being physically different.

I’ve certainly never been hot stuff or even remotely close, but have ‘average’ looks and fit into the standard white anglo mould, which has allowed me get through life in a pretty steady fashion. Then, in a matter of two months I had my right breast cut off and lost all the hair off my body (apart from the aforementioned eyebrow hairs).  I was suddenly dropped bald head-first into the world of stares, double-takes and backward glances, which when you are already feeling very fragile, is not a nice place to be.

For the five weeks after I had the mastectomy, I had to get about with a very dodgy pretend boob which used to try to sit on my shoulder like a pillowy parrot. I suspect that nobody else in the supermarket was looking at me closely enough to actually notice, but it made me really self-conscious and I was so, so happy when I got my real fake boob. It was amazing how much impact feeling like I looked like I did before had on my mental state. That lasted only a couple of weeks until, just days after my second chemo treatment, the majority of my hair fell out one morning in the shower. I quite literally went into the shower with a full head of short hair (I’d had it cut in preparation), and came out looking like a mutant peach with patches of fuzz mixed with sections of completely bald noggin. My husband then set about using his Bic razor to even things up. I’m pretty sure our marriage vows did not include any mention of shaving your wife’s partially bald head, but I guess things like that fall into the general categories of love and honour.

I had mixed feelings about being bald. On the upside, it is really freeing not to have to wash or comb or dry or colour or cut your hair, and the feeling of showering when you have a bald head is absolutely amazing – I would often stand under the flow in a blissful trance until the hot water ran out. On the downside, I certainly did not have the confidence to get about bald in public, so my choices were pretty limited – wigs, scarves or hats. In the very early days I tried a couple of wigs, but the combination of my very large head and the fact that it was Queensland in summer, meant that after about 45 seconds of wig-wearing I looked like a sweaty, itchy lady with bad Lego hair.

This fan ain't for decoration.

This fan ain’t for decoration.

So I moved on to scarves. I love scarves as a fashion accessory, but prefer them wrapped around my neck in winter, and not my head in summer. I bought about a dozen in a vain (and I mean that both ways) attempt to find something that didn’t make me look like a middle-aged female pirate. I soon found out that even if my scarf didn’t have a skull and cross-bone pattern and I wasn’t wearing a single hoop earring and an eye patch, being an obviously bald woman wearing a scarf brought me lots of unwanted attention in public. The first time I ventured out after I’d lost my hair was to a local shopping centre. I immediately noticed people staring as I walked past them, and there were several people who did the classic double-take, as well as a few who actually stopped in their tracks to watch me as I made my way through Target. I felt incredibly uncomfortable, but when I got home my husband reassured me that people wouldn’t be so rude as to stare and I was just being overly sensitive. However the next time I was in public and he was with me, he realised that it was not my imagination and in fact people were actually as rude as I had first thought.

When you’re dealing with cancer, you’re faced with many uncomfortable situations, such as conversations with doctors about what chance you have (expressed as a percentage) of still being alive in five years. But those situations and the way you deal with the outcomes of them are thankfully done in private, whereas losing your hair makes your cancer conspicuous to the world, which apparently causes some people turn into thoughtless shopping centre rubber-neckers and others to feel the need to ask the most impertinent of personal questions. While I was bald I was asked by a check-out operator what sort of cancer I have, by another customer in a bank if I’d had a mastectomy or just a lumpectomy, and by someone who I’d met two minutes earlier outside our kids’ classroom if I was planning to have more children once I got over the cancer.

The bald head and thinning eyebrows seemed to cause all social norms to go out the window, and honestly I would have just hidden away at home for the duration if I’d had any choice in the matter. But we still needed food to eat and Christmas and birthday presents had to be bought, and my boy still needed to be taken to school every day, so I just learned to steel myself with a few deep breaths and push through the world pretending not to notice or care about what others were thinking or saying. It pains me to think about people who live every day with visible difference and the rudeness that they are subjected to as a matter of course.

Today, I have a lovely crop of hair and eyebrows that could actually do with a wax. People don’t look twice at me in shopping centres and I am just as nondescript and zombie-like as every other poor person in a long lunch-time bank queue. I look like a stock standard middle-aged woman, and with every passing day I feel a tiny little bit less like I have the word cancer stamped all over my psyche. All I’m waiting for now is an invitation to a fancy dress party because I have a shitload of options in my wardrobe … as long as the theme is ‘adventure on the high seas’.

I can't believe the title I wanted for my autobiography has already been taken.

I can’t believe the title I wanted for my autobiography has already been taken.