Strange love

Let’s face it, for most of our lives we inhabit a middle ground, characterised by routine and its attendant minutiae. There’s coffee on take off, wine on landing and fretting over what’s for dinner in between.

If cancer has taught me anything, it’s that at the edges, things get really interesting. Yes, you are confronted, challenged, exposed and saddened, but this opens the door for comfort, reward, protection and love.

Today, a lady called Amy called by. She, too, has three children, the eldest of whom is at school with Amy. She and I have met two or three times. This is what she brought:

Strawberry muffins, bolognese sauce, pasta and a lovely little cactus.

I can’t even begin to list the number of kindnesses that have been shown to me in the last six weeks. But this gesture in particular really got to me. That she is almost a stranger makes her generosity all the more poignant and is, I think, a truly articulate expression of how tragedy unites.

I didn’t get to thank Amy in person because I was on the phone with Jane, a Breast Care nurse. These specially trained nurses work as case co-ordinators and patient advocates, plus they participate in multi-disciplinary panels, where non-straightforward cases are reviewed by a range of experts. I met a Breast Care nurse in hospital but was too arrogant to pay her much heed. I left the big pile of literature in the hospital. My attitude was “I don’t have cancer anymore. I don’t need you.” Then my pathology with its lousy margins comes back and with tail between my legs, I scurried to get back in touch.

I was seeking Jane’s advice on how to access a radiation oncologist to explore whether further treatment is advisable. Also, because I’m at real sixes and sevens on this decision I asked her view on whether she thought it was necessary. Her response was “I can hear you’ve got little kids in the background. I totally understand your need to do all you can to get fully well.”

It’s not often the kids get mentioned. But when they do… man, it’s Kryptonite, obviously.

Then I get off the phone to find this basket.

I’ve not cried since returning from hospital. But on spying that? The taste of strawberry muffins with tears is quite something.

A hair’s breadth

A couple of times on this long and bumpy road I’ve encountered severe loneliness. This has coincided with times the general mood has conflicted with my own. For example there was an assumption that “It must be lovely for you to be home from hospital!” Well actually, it was difficult. I was brutally exposed to my limitations. I couldn’t hold my son. I had to surrender to help (that I know I’m lucky to have) and recognise that life was going to be different now.

A week later and I am physically healing well, sleeping fine and am able to make a number of small contributions to the household. I am adapting to the new normal.

Still, yesterday this onslaught of loneliness happened again when I got the “all clear, but.” While there were whoops of joy around me for the all clear, my mind kept snagging on the ‘but’. I loathe how this disease has given my optimism, which I have worked so hard for, a roughing up. Plus if flashes of irritation were to appear from those around me that I can’t get with the celebratory program, that would be understandable. I wish I could, I really do. However, I don’t feel as if I’m out of the woods.

[youtube=http://www.youtube.com/watch?v=SfkvPnjb9hs]

I was looking for the all clear, then I got the all clear, and heaven knows….

In brief the ‘but’ is that while all the cancer was removed from my body, the ‘margins’ namely the gaps between the edges of the breast tissue that got taken from me during my mastectomy and subsequently pathologised, and the cancer were less than 0.1mm, in fact in one measurement it was 0.02mm. This implies that while all the tissue it is possible to take in a mastectomy was taken, there may be remnants in my body that could grow again in years to come. It would not be breast cancer then, but may appear on the chest wall for instance and my (albeit layman’s) understanding is prognostically, this type means you’re pretty much d-e-a-d. The cancer recurrence rate post mastectomy is meant to be 0.03% but for those, like me, with low margins, it’s more like 5%.

This is still pretty low, I realise, but if it could be reduced further by a course of radiotherapy, for instance, that is something I would consider (although there would be implications for my breast reconstruction should that occur.) Say having a mastectomy means I’ve paid a ‘price’ of $1,000,000, I don’t want to get cancer again because I should have paid $1,001,000.

Anyway I’ll be taking advice and will not take any drastic action, it’s just… it’s not over yet.

Another reason the saga continues is I’ve decided to see a psychologist to help me get my head around the epicness of the last six weeks. I think I’m ready now. After all when you have appointments to go to, an operation to prepare for and a big logistical banquet to organise you can keep your mind focused on that. Now that’s finished. It’s the beginning of the end (or at least the end of the beginning). Time for the genuine processing to start.

Plus I’d be lying if a tiny part of me didn’t want to see a shrink because I think it’d make for entertaining blogging fodder.

In my head (or the movie script) I’d drafted a ‘thank you’ post acknowledging everyone who has helped me along the way. And another ‘silver linings’ style post.  These may still come but not for a while.

Essentially I had hoped to be able to wrap up the little c and carry on blogging in a spin off  which focused on the reconstruction effort but I can’t, not yet. Not when the unwanted guest has demanded more airtime.

So here we are.

Woo! hoo?

So I got the results from the pathology today and heard lots of positive news. My lymphs are clear, which means nothing has spread, and there was no invasive cancer (‘microinvasions’) in the affected breast. There was no sign of anything troubling in my right breast.

But.

When they took the breast tissue and spread it out they discovered the ‘margins’ namely the space between the cancer and the sample were very narrow indeed, less than 0.1mm, which means I am at a higher risk of a recurrence on my chest wall, for instance. Dr. Leong doesn’t believe follow up radiotherapy is required, but is going to take my case to the review panel to check.

The DCIS was very long – 9.5cm. Given the mammogram & ultrasound estimated 3cm and the MRI 5cm, this goes to show how the best imaging can only tell you part of the picture.

A positive thing this demonstrates quite emphatically is that a mastectomy was definitely the best, in fact the only choice in my case. If I’d have gone for a lumpectomy, they would have had to reoperate. So that’s a relief.

There is masses to be grateful for. How much longer before it became invasive? How much more concerning would the lousy margins be if invasive cancer were detected? And some people’s results show no margins whatsoever.

Also, is the story as bad as all that? I agree with Robert that there could well be an element of arse covering:

I hate how specialists so often leave the ‘small chance’ language to linger. I sometimes wander if it’s a ‘cover my arse’ strategy due to fear of litigation. I think we’re all ‘ones to watch’ these days, there appear so many things out to get us! Like sharks in the harbour – make the water cleaner, have more pleasure cruisers and what do you get? More shark sightings. Not necessarily more sharks.

Am I disappointed that the all clear isn’t clearer? Yes. I had hoped such comprehensive treatment would make the likelihood of a recurrence miniscule. It is still pretty small, though.

Plus who amongst us can hope for a life free of worry? I know my worry list today is a good deal shorter than it was yesterday. When I feed Theo tonight, for example, will I contemplate whether I’ll still be there when he’s in secondary school, like I did last night? No. I am going to be there, for sure.

There is still plenty to celebrate. Plenty.

Cheers!

Nitty gritty

Having this condition gives you a whole body workout. It shoves you a million miles out of your mental, physical and spiritual comfort zones. You’ve all been great companions on the mental journey I’ve insisted on (over?) sharing. So for a change I thought I’d describe what’s occurred on a physical level.

At midday on Monday 12 August, my huge cloud of prayers, love and light and I were wheeled into theatre where two surgeons were waiting to do their work.

The first was the cancer surgeon, Dr. Leong.

For her opening trick, she performed two sentinel node biopsies, which will identify if any cancer has spread outside the breast (it better bloody not have.) Here’s my layman’s understanding of the process. On the morning of my op, in preparation for the biopsy I went through a complicated process to find out which of my lymph nodes was the first to take up the fluid – and potentially cancerous cells – from my breasts and into my body. So their unceremonious swan song was for each to receive three injections of radioactive dye. As the pathology unit had once again given Dr. Dreamy the day off, the needles were inserted by an old duffer with hairy nostrils who insisted on reiterating the fact it’d sting six times, and wincing each time he inserted one. If he was trying to reverse psychology me into making it not hurt, it worked. He then gave each breast a little massage to expedite the draining process (so weird I know! And I promised to give the ‘mental’ a rest.) Next I was to wait an hour before spending forty minutes having imaging taken by an exceptionally sophisticated and no doubt incredibly expensive camera. At the end of this process a technician took a thin-tipped magic marker and put an ‘x’ just inside the fold of each armpit, about 0.5cm away from where it gets tickly.

In theatre, Dr. Leong took a gamma machine to the armpit to help confirm the precise location of the first, ‘sentinel’ node. She then made the cut, found the node (good news, they don’t always make themselves known) biopsied it and prepared a sample for pathology. Twice. Performing this on the right side, where the breast has shown no signs of cancer and was removed prophylactically, is a sign of an extremely cautious surgeon. But there is no testing the nodes after a mastectomy so it was then or never.

She then went on to perform two kinds of mastectomy. On my right breast was the least invasive it is possible to have – known as ‘nipple sparing’. The incision occurred under the fold of my breast and the fat, tissue and nerves are scooped out, a bit like taking the flesh from a melon, leaving the skin and nipple attached.

On my left, I had a ‘skin sparing’ mastectomy, which is the second least worst type you can have. According to the MRI, which is the most accurate imaging tool available, there were signs of ‘abnormal activity’ right up to the nipple. You can attempt to ‘save’ the nipple in this instance but it’s risky. If you try when imaging suggests there’s cancer you are obliged to have the skin behind it pathologised during surgery to see if there are cancerous cells there. My surgeon told me the sample needs to be as close to the tip of the nipple as possible, as all you need is one bad cell to survive at the tip for post-mastectomy breast cancer to reoccur. But if you take the sample too close the nipple’s edge, you compromise its blood supply which means you could save the nipple during the mastectomy only to have it shrivel up and fall off down the track.

Can you believe this shit?

I will not know for certain whether the MRI was correct until this Thursday at 1.30pm, when I visit Dr. Leong for hopefully the last time to collect my pathology results and, I very sincerely hope, the all clear. Need more prayers and light and all that then, please people – having undergone the gold standard cancer treatment I have zero desire to go on a crash course in wigs and hats.

Anyway to be on the safe side my left nipple was removed during surgery. So on this breast the incision was made all the way across the middle with an almond shape cut either side of the nipple which was once again prepared for pathology.

Dr. Leong’s work was done.

Next up is Dr. Moko, my plastic surgeon. She inserts two expanders under my pectoral muscles. Each expander is a round plastic pouch about the size of a drinks coaster, and each will be injected with saline over the coming weeks as part of the reconstruction. She kicks the process off by inserting 100ml in each pouch, which explains how come when I wake up, my chest is not concave as I had expected it to be. It’s all kinds of wrong, but not concave. Anyway, back on the operating table four plastic tubes – attached to drains and surgical bags – are inserted a few centimetres south of each node biopsy site. Over the next four days they will collect a total of more than a litre of blood and fluid and will get in my way each time I try to use the loo or walk anywhere.

I am stitched up. At two sentinel node sites. Under my right area formerly known as breast. Across the middle of my left AFKA breast, pulling the almond shape closed on its way. The tubes on the drains are held in with a stitch. All of the stitches – read ouchies – are covered in masking tape and I’m brought out to recovery where I scoff an ice lolly. The whole process takes five hours.

Five days later, I finally leave hospital minus the drains. Because I am not allowed to get anywhere that is taped wet, I feel only semi clean and will remain that way for several weeks.

On day one back home, I was shocked to discover I could not manage even light duties and I’m to strip off the sackcloth and concentrate on recovering/getting over myself. As instructed, I take 4 x 2 Paracetomal daily to elevate my baseline pain threshold and control any further pain with a codeine tablet. The codeine works, but I use it sparingly because it extracts a price of nausea, dopiness and constipation.

I am able to take short walks, and know to turn back before I expect to need to. On Monday, I dialled in to my weekly directors’ meeting and enjoyed a long catch up of the happs both in the business and out, before excusing myself for a lie down.

I’ve been home five days now and while holding Theo is still impossible, I can feed him and play with him whilst he is in his high chair. The girls – having been reminded a dozen times – are respectful of my limitations and have adjusted pretty well, calling on me for stories and as a hair model. I’ve got about 60% motion in my arms. I can’t carry anything heavier than my phone or a cup of tea. I can reach forwards and partly to the side but crossing my arms in front or reaching high is a no go. I could do the Charleston and a robot dance, but not Saturday Night Fever.

Today, I went to see the plastic surgeon again for a further saline injection into the expander. I need a bit of a break before penning a post that will probably be called something like Needles, mirrors, tears and pain.

Say hello, wave goodbye

On the way home, whilst talking about Theo I felt my chest fizzing. At first I thought it was ghost limb syndrome. Shortly after, the pain started to rise up and we had to pull over and fumble around for the meds. Once I could talk again, I said “Of course those little babies have been delivered to me four-hourly over the last four days. I’m going to have to get my head around what I need to take when.”

“It’s the only job you’ll have, Sambo. Mum and I are going to look after you for a while yet.”

“Well Ted, I do want to contribute where I can. I’ve been thinking about the jobs I can do. Prepare an easy meal. Make tea. Do some ironing. Read to the kids. Put the girls to bed. I’ll be fine, so long as I don’t raise my arms above my head, have anything press against my chest or bear weight on my arms.”

“And you can manage your pain.” He looks at me dubiously.

My time at home so far has made a mockery of my expectations, limited though they were. This makes me sad. It’s one thing surrendering to others’ care in hospital, quite another doing the same at home. And having my kids there, yet being unable to do much compounded my sense of helplessness.

I spent much of the day reclined. I did manage to read the girls a few stories, interspersed with barked instructions on where I can and can’t be touched. Meals were magically made, nappies were changed and I am supremely grateful for this, but learning to receive help and letting go of control will be an ongoing struggle for me.

One thing I couldn’t wait for was the reunion with my baby. I think I missed him most of all whilst I was in hospital. After all, he and I have slept together every night for eighteen months – nine inside me and nine out. The nightly act of curling around him and pressing my thumb and forefinger over the dimples on his fat starfish hand never failed to light me up. While he was happy to sleep with Ted while I was gone, I knew sharing the bed post op was not going to work. He is strong now, and squirmy and could easily hurt me in the night.

But I’d reconciled with that and had adjusted to what the doc said was possible, i.e. that while I can’t pick him up, I can have him placed on my knee. Both Theo and I had face cracking smiles when he was put there but before I could even reacquaint myself with his smell, he nuzzled into me, which pulled at the tape on my stitches, causing white poker agony. He was whisked away again. I don’t know what was more painful, my physical reaction or the look of bemusement followed by indignity on his little face. Then, surprise, surprise, tears from us both. He gave me those pissed off cat, fresh from the cattery looks all the rest of that day.

I’ve had a long list of negatives to contend with in the last month, and they vary in gravity. Least problematic are the numerous financial and logistical compromises our family have made. Middle tier annoyances are the aesthetic adjustments Ted and I need to get our heads around and attending amendments to my identity, plus the whole medical/hospital/’pain management’ experience. While top of the pain pops are the whole mental onslaught living with cancer brings (‘brave’ as I seem) and the permanent loss of physical sensation in my breasts plus the loss of my nipple, I am deeply mourning my independence and the inability to give and receive affection to Ted and my children.

Particularly Theo.

Thank God that’s only temporary and when these scars have heeled, I’m going to smother those poor people each and every day for as long as they’ll let me.

24 hours

Thinking back on the first 24 hours post op is a bit like thinking back on a big night out. Some scenes you remember really clearly, others are altogether missing and yet more are recalled only when you’re reminded. Plus like all good big nights out, it’s all out of sequence.

I’ve spent the next few days piecing it together, Miss Marple-style.

I have no recollection of him not being here but apparently as soon as I got in my room I phoned Ted to say “Where are you?” Next up (possibly?) I sent out this blustery Facebook update:

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I remember being very gratified by my friends’ reactions, although in reality the dopamine hit you allegedly get from ‘likes’ would have had no chance against the ridiculous amount of morphine that was coursing through me. I also now know that the ‘cheek’ would subside as the effects wore off and I got to grips with the extent of my helplessness.

But whilst on the high I had a very lovely conversation with Ted (or more accurately, delivered a lecture to him) on the myriad kindnesses I had been shown, focusing in on the wives of my business partners who had sent gifts he delivered that night. I noticed he was looking at me askance, but undeterred, I segued into another lengthy tribute about how lucky I am to have Ted in my life and I couldn’t wait to go home so we could get back to playing with our babies and bickering about the veggie patches.

And then I came down.

Here’s how I recall the following hours, interspersed with numerous missing scenes. Ted’s gone, and it’s dark. A chilly injection through the cannula that’s bound to my wrist with a ridiculous amount of tape (That’s going to hurt when it has to come off, I thought, and I was bloody right as well). Tablets, too, so many tablets. An injection in my stomach. Needing to pee, swinging my legs to the side of the bed, forgetting there are blood drains attached to either side of me, then struggling to pee into a bedpan delivered by a told-you-so nurse. Laughing, laughing, laughing with a friend on Facebook chat, so hard it hurt and I had to click on my drip. Sleeping briefly then waking, heaving and shaking. Nurse? No, it’s a 5.5 now…I feel.. Yes, it’s normal. Take this. Watching the cricket through misty, dormant eyes and listening through muffled ears. Bravado crumbling like the Aussie’s middle order. Feeling flat. Glancing down. Feeling flat.

The next morning, although the pain had stabilised, I was feeling very sorry for myself. Ted, though, was  relieved. “You look so much better! That towel around your head was freaking me out.” He kisses me then presses my face. “Is it still like Edam? … What? That was your description!”

“Was it?” It does sound like the sort of thing I’d say.

“So the plastic tube’s gone. You can’t do Hector from Breaking Bad anymore.”

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I remember my impersonation and this coaxes a smile. “Yes! I had to yank that out, it made my nostrils dry as hell, but when you use the drip you have to keep the oxygen in. Every time the nurses came in I’d be fumbling around, trying to get it back on.”

I sit up, feeling more chipper. “Ted! In the night I had a long Facebook chat with Hollis about creating a Michael Holding alarm clock app. Best business idea ever?”

I show him the feed and he laughs aloud. He reads on to the bit where I admit to having Snow Patrol on my iTunes, which leads to discussion of a suitably middle class punishment (jumping out of a plane, strapped to Chris Martin singing a mournful dirge, further weighed down by recyclable Waitrose bags OR listening to Snow Patrol til I expire from boredom). More laughing.

So it was monologues up, helplessness down, laughing up, heaving down, cricket down, waking up flat, seeing Ted and laughing again… back up.

And then a spectacular down when later that day, Ted helped me to the shower, and we both saw me naked for the first time.

Oh my. My chest was all wrong, like a rag doll’s, albeit with tiny and tidy stitches.

“It’s a work in progress.” Ted said gently. I don’t know how he did it but he managed to strike the right balance between strong but kind, sad but not revolted.

This did not make me cry less. On the contrary. I’ve tried to explain to my kids, when you cry it’s not always just because you’re sad. My tears were of confrontation, adjustment, loss, gratitude and relief. And yes, a healthy dose of entirely understandable sadness.

No doubt I’ll be pressed up against the glass some more before this shitfight finishes. But you know what they say.

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The day of cure

Last week involved lots of admin and trips to specialists (including the anaesthetist Dr. Crilly, who was brilliant) and while I complained at the time, the stillness and silence in the weekend prior to the operation was far harder to deal with. I was steeped in a horrible soup of fear, worry, anxiety, sorrow, trying to enjoy the kids and my boobs, but each ‘nice’ scenario was blotted out by pathos and fear, worry, etc. These emotions were shared, and so amplified by Ted.

On Sunday night I had a conversation with the children about what was happening and how when they saw me again I’d be totally flat chested (the reconstruction is happening separately, later). As young kids do, they took this entirely in their stride.  Amy said “So the doctor takes your boobies off, gets out the splinter or whatever, and puts them back on?” “Well…not quite.” I overheard Eleanor’s pre-bed chatter “Amy can I tell you a story? Once upon a time there was a lady called Sam and she went to the doctor for a few days. They took off her boobies and THEN they put them back on! And when she came home, John and Amy and Theo and Eleanor and granny saw her, and they were amazed.”

I was so relieved to be able to tell them a version of the truth that didn’t worry them, but hugging them tightly and knowing I’d be too sore to do it again for a long time hurt me hard. Bittersweet.

The real low point for me was on Monday morning when I had to wash my body and hair with a special pre-soaped sponge, sealed in a foil wrapper and given to me by the surgeon. That foil wrapped fucker sat in my bathroom all the week before and gave me the hairy eyeball every time I used the loo. Ripping it open and getting on with washing was actually a relief.

That Monday, I found myself on the receiving end of an unbelievable amount of goodwill.

There are 3 screens of this!
There are 3 screens of this!

Each one of these messages, not to mention emails, Facebook posts, comments on the blog, virtual hugs and thoughts of love and light, made a massive difference.  So please don’t ever feel helpless because if you’ve expressed yourself in this way, you’ve helped me more than you know.

On Monday I found myself clinging on tightly to a few thoughts in particular.  Jodie’s ‘no amount of loveliness’ sentiment as expressed on this post really helped keep my eye on the prize. As did the words of my big brother Simon, who told a story of how one day as a kid I was freaking out about homework and he calmed me down and urged me to see the bigger picture – he wanted to offer the same assurances now. Definitely helped. Felicity texted to say “love to you on your day of cure.” Amazing use of positive language which is continually proving to make a massive difference to this whole experience.

But the real pearler on Monday came from my best friend Faye, who had surgery recently and shared her reassuring experience that on the day, I could expect to feel calm and ready. She, too, thrashed about in the days prior, bargaining, feeling afraid and so on, but when it came to the crunch, ‘nature provided.’ She told me this while I was in the soup, so I struggled to believe her, but I was astonished to discover she was right.

Of course I had my moments. Telling Ted my Internet banking passwords. Expressing who I want to have an ongoing relationship with our kids. Walking through the patient-only area. Theo’s dazzling smile as the door slid shut. Removing my necklace and putting it in a sealed bag with my name label on it. Compression stockings on. Stripping down and donning the surgical gown. The paper shoes. The paper underpants. The waiting room where I was, once again, the youngest by a good few decades. My mental commentary was ‘Shit’s getting real.’ On a loop, louder and louder. But still I felt calm. Sad, but calm.

The porter, waiting with a wheelchair, gesturing for me to sit and me taking several seconds to grasp that’s what I had to do. Him pressing the down button of the elevator.  Small talk. Into the hands of the anaesthetist’s assistant. My friend Carol’s advice:

Get some Vaseline for your lips afterwards and get them to slather it on when you’re still not really with it – I remember wanting some on my lips so badly but couldn’t articulate it.

So I asked the assistant do you have Vaseline to counter dry lips? And he said “No, but just ask for an icy pole in post op – that’ll wet your whistle.”

I remember being marked up by the surgeon, and having a little cry with the anaesthetist. She encouraged it, observing there’s an emotional debt to pay and if sorrow gets suppressed, it rears up later, demanding payment with interest. Then the juxtaposition into small talk as the lines went in. “Mullumbimby! That’s a lovely part of the world.”

Carol had told me to revel in the pre-op, which Dr. Crilly had described as ‘An instant hit of half a bottle of champagne.’ Well she was right. Because when I have that much to drink these days I’m Captain Crashout.  I passed out cold.

Next thing I knew an unfamiliar voice said “It’s all over and you’ve done really well.”

“Icy pole… can I have an icy pole?” I croaked.

I did. And it was good.

A eulogy

They’ve distracted. Attracted. Seduced. Been exposed to a dozen or more Spanish summers. They’ve nurtured, been a pillow to babies and children and some grown men too. They’ve waxed and waned, heaved and sagged.

More recently during their trial for treason they’ve been squashed in a mammography machine, subjected to MRI, biopsied using a device like a stapler and pierced with six needles containing radioactive dye. Found guilty, their sentence saw them covered with dotted lines from a permanent marker – like a butcher’s poster.

And then they were cut off.

Next they will be spread under a microscope and pathologised.

Once, they were lovely things. So lovely and the source of so much joy. But as my friend and colleague Jodie observed:

no amount of loveliness you get from your breasts compares with what you’re going to gain by losing them.

What you can do

So I go under the knife on Monday and am feeling a surge of concern amongst loved ones. Hardly surprising given it’s a major – perhaps the major – event in the whole process.

Of course unless you live nearby, it’s hard to do anything practical. Here are some ideas of how you can genuinely help me.

1. Get screened If you’re a woman and are knocking on 40’s door, or know one who is, please get in touch with your local breast cancer charity to find out how to access an early screen. If you have cancer in your family GET SCREENED. Seriously, just do it.

I was complacent for a long time, and nearly didn’t go when I did. There’s a woman in my community, a friend of a friend, who’s 44 with two kids and her first screening detected stage 2 cancer. That could have been me. Don’t let it be you. Just…don’t.

2. Get loving The silver lining of this (and there have been a surprising number of them) is how it’s put me on the receiving end of a tsunami of love. It’s given people permission to express deep affection and concern and I am supremely grateful for this. In fact given my chances of survival are incredibly high, I even feel a bit guilty to receive it. It has been an emotional but very touching demonstration of just how brilliant people can be.

Ted and I are going to come out of this invincible, I swear. I love the shit out of him right about now. We have never made vows but are living the whole sickness and in health, for better or for worse thing. And the richer or poorer, thanks to Bupa’s inadequacies.

Having your health compromised does remind you that life is exceptionally precious, and if by sharing my pain you’ve been encouraged to tell me you love me, hug your kids more tightly, or squeeze your loved one more poignantly then I’m grateful and glad.

3. Get living A few years ago I read this incredible article and it was just the grease I needed to move my priorities around to the extent that if I were to die, I would not have any regrets. I’d be extremely ticked off, of course, and feel physically sick at the notion that my kids would have to swim through an ocean of sorrow as I did whilst growing up. But if my number was up, I wouldn’t think I wish I’d enjoyed my work more, or spent more time with those I love. Could do better on the keeping in touch with friends thing, admittedly, but that’s just as well otherwise the mercury may well bust out of the top of my smug-o-meter.

4. Get giving If thoughts are turning to flowers, or books or chocolates or gifts, I’d like to thank you but also to say please don’t! I’d much prefer a card or email and for you to take what you were going to spend on me and donate it to this charity, utilised by a local family whose six year old, who went to preschool with Amy, is currently undergoing chemo. I’m pretty sure they’d walk a million miles to swap places with me right now.

Finally, I’d be really glad if on Monday at midday AEST you could send me what my friend Jayne quite delightfully calls “love, light and all that shit.”

Perking up

Thankfully for me, and in no small measure for you too, no doubt, my funk has lifted and the world appears a bit brighter today. Theo is back to full health and I’ve another reason to be cheerful.

Here’s why.

There’s a dodgy sales tactic whereby you go to buy a widget and you think it’ll cost $100, the salesman says it costs $1,000 and you’re outraged, so he says ‘I’ll give it to you for $500’ and you feel relieved, even though it’s $400 more than you wanted to pay.

It’s a bit like that for me today.

I’ve found out that my right nipple can be spared without badly compromising the overall cosmetic appearance of my reconstruction. By the way does being reconstructed make me the bionic women? Maybe. Anyway they won’t be perfectly symmetrical, the scars won’t be in the same place, the nipples won’t look the same but it’s not oncologically dangerous and keeping Pinky in place is a crumb of comfort  I’ll take right about now.

Isn’t being miserable boring? I’m very conscious I’ve been spraying misery all over the place like some mad toxic sprinkler system. You back yourself into a corner and there’s nothing anyone can say. But of course my grief is legitimate and understandable but, let’s face it, more than a bit boring.

Another small mercy is today is the first day this week that hasn’t involved a long drive north to meet a specialist. This allows a sense of normalcy to pervade the day and I know, now, to cherish that.

Back up the coast tomorrow to meet my anaesthetist. The appointment was made on my behalf by my cancer surgeon Dr. Leong, who we met again yesterday. Dr. Leong will perform stage one of my op (sparing Pinky) and then the plastic surgeon Dr. Moko will take over. It was a full on meeting with talk of node biopsies, a description of the pathology of my breast tissue, the possibility that microinvasive cancers may be found  and a reiteration of the risks associated with my surgery. More of the yes doctor, no doctor business. More paperwork. More snorts of disappointment as I pay for the treatment.*

As we leave, Dr. Leong says “Try and rest over the weekend and I will see you Monday. My practice manager will tell you when she’s teed up the time for you to meet the anaesthetist, Dr. Crilly.”

Ted and I steal a quick glance at one another before biting our lips and looking away. We manage to keep it together til we get into the lift when we start hooting with laughter.

We call each other Ted after Father Ted… whose surname is Crilly. What are the odds?

*I am incandescent with (no doubt carcinogenic) rage at the inadequacies of my health fund’s contributions for this whole clusterfuck, but that’s another post.