Action Stations – a short bulletin

Chris and Bill’s Blog Reboot – Chapter 3

There’s always some kind of good reason for the protracted gaps between posts on this blog. Well, if you count procrastination; not much to say; the distractions of daily life, as reasons, then I’m sure you can appreciate how challenging it is for me to be a reliable blogger.

And now let’s put all of that aside while I tell you about my last rollercoaster month and you may perhaps understand why it’s taken me so long to get back to the blog – this month.

Remember back in August, when I described the breakthrough moment with the Clinical Trial – the signing off on the 26 page Ethics clearance? Well that all happened, and was quickly followed by the screening. And then things came to an almighty halt. Let me do a quick timeline for you.

Thurs. After so very many months of to-ing and fro-ing, setting up the infrastructure for the trial, appointing staff, and doing revision upon revision of Plain Language Statements for Ethics, at the eleventh hour the multinational drug company that was sponsoring the trial through the provision of those all important, expensive immunotherapy drugs, pulled the plug on the Melbourne trial. The company is called Bristol-Myers Squibb Pty Ltd, if you would like to send them a Christmas card this year.

Fri. Oliver calls me up with this news, and says that the days of waiting are over. Plan B is put into action immediately. And no, this doesn’t involve putting firecrackers in the letterboxes of Bristol-Myers Squibb, or members of various Ethics committees, but starting on a new round of chemo.

Mon: 8am Peninsula Private Hospital at Frankston, round two of chemo begins.

How’s that for an end to the waiting? (And I’ve left out the story of my sore shoulder, which some of you have heard ad infinitum and the rest of you don’t need to hear at all, but suffice it to say that throughout this time I discovered what it feels like to have bursitis and I’m not a fan.)

So here we are, two weeks into the new chemo regime – it’s a 28 day cycle with a different drug cocktail from last year and so far, so good. Not too many side effects as yet, and I am currently shopping for a Spring collection of hats, in anticipation of the inevitable hair loss, though currently I’m enjoying still having my own hair!

Those couple of rollercoaster weeks leading up to the start and demise of the trial were probably amongst the hardest of the last twelve months, but remarkably, we bounce back. It’s good to be proactive again, doing the treatment, living well, hanging out with the kids and with friends, enjoying the beach, wrangling the naughty dog, doing my own idiosyncratic version of yoga.

It’s been a busy couple of weeks since the start of treatment, but I’m going to save my usual indulgence in story telling for a future blog, and finish up with just a few things to share.

*Bill is off to America today. His mum was taken ill last week, and ten thousand miles is just too far away when your mum is sick. Martha, Bill’s mum, seems to be doing better every day, so he should get to spend some quality time (excluding air travel of course) with his family in Cape Cod. And all of us at home are sending Bruce and Martha and the family Stateside all our love.

*Our friends Deirdre and Mary (her daughter) are running in the Melbourne Festival Marathon – and rather than speculate on what Bill and I could possibly have in common with people who run, could you consider sponsoring them? They are raising money for the Ovarian Cancer Research Foundation, and I don’t know about you, but I think it’s a pretty good cause – perhaps one day they’ll be less dependent on Big Pharma money for research?

*And, one more thing – I wanted to let you know that both Bill and I managed to find the Post Office the other day. We have ALREADY told the Australian Bureau of Statistics that we are in favour of marriage equality. If, like us, you need guidance on finding a post office, just let me know and I’ll send you a link to google maps.

 

So that’s it for now.  I wanted to call this post Where’s Franz Kafka when you need him, but considering I’ve never even read Kafka’s The Trial, I thought it might be too pretentious, even for me!!!

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Action Stations – a short bulletin

If it’s Thursday it must be raining – a Cape idyll

Chris and Bill’s Blog The Reboot – Chapter 2

A wintery Thursday night in August, in the heart of the temporary Cape Paterson doggie kennels and menagerie (see below for details)

You get the picture. If it’s Thursday, it must be raining. The wind is positively roaring outside and there’s an indefinable thumping sound on the side of the house that may or may not warrant some investigation – tree branch? possum? burglar? tall wombat? The neighbour’s dog hoping to score a spot in the Cape Paterson doggie kennels and menagerie (see below for details)? Thanks for staying with me through all those speculations – I think it’s a tree branch…

It was thrilling for me to hear from so many of you after Chapter 1 of the blog reboot. Apparently waiting is a familiar experience for lots of people and empathizing with the waiting that others do helps to pass the time it seems. Well that was certainly the case for me. And it hasn’t escaped my notice that I’ve now contributed a certain ironic twist to this theme, by keeping you waiting an inordinate amount of time for Chapter 2 of the blog reboot. Yes, the irony is a little bit delicious but not really intended – I’m just very slow to get to put words on a page – always have been. And yes, in case you’ve formed this question in your minds as you begin to read, we are still waiting on the trial to begin.

However, there has been the slightest of movement in the direction of action on the trial front. Today. The mail comes early in Cape Paterson, so I frequently pad out to the mailbox in my oversize slippers and my slightly too light weight for the time of year PJs before my first cup of tea – as I did this morning. And today, in the box there was a large white envelope containing the largest, most complicated Plain Language Statement and Consent form I’ve ever seen. Apologies to those of you who don’t work in universities and have escaped the joys of post grad study, but this is an in-joke. Ethics forms are the bane of every academic’s and every post grad student’s (and their family’s) existence at least once or twice in their lifetime. So here I am, waiting for the kettle to boil for my first cup of tea and I’m skimming through this monumental document. All I could think of was – how many times did this have to go back to the Ethic’s committee? And, how long did it take them to translate all that medical jargon into an almost recognizable version of the English language? Eventually, I stopped empathizing with Oliver and his team for having to run this tortuous ethics gauntlet and started thinking about me and what the document was actually communicating.

Well, it did tell me quite a lot about the drugs to be used, the stages of the trial, the possible side effects, the right to withdraw from the trial at any time, and yes, even where it was going to take place.

What I didn’t learn, however, and this is the salient point for Chapter 2 of the blog reboot, was – what happens next? What do I do with the form, when and where do I go for the screening (the next big hurdle), and when… does it all start? Not so much as a hint of a cover letter, or any such practical information that would have circumscribed this current experience of waiting. Still waiting. So you will have to wait too.

In the meantime, I’ve been contemplating what I could possibly share with you about this rather uneventful rather ordinary life I’m leading down here at Cape Paterson. One of the things I’ve learned in the past twelve months or so is that the ordinariness of life is vastly underrated, and that within even a small, ordinary moment, an encounter or an event can be rich, maybe even significant. So, here are a couple of snapshots – little sketches that perhaps I would have drawn if I had the facility to do so.

 

#1 Round the corner and up the hill

When the weather is balmy, and I’m persuaded to take the dog (note his elevation from ‘the puppy’ status of earlier posts) out on a late morning walk there are a number of different paths that Bernie and I can take. They all lead to one beach or other, but the variety is part of the pleasure – for me anyway, Bernie couldn’t give a stuff.

We walk down Spear Street, making sure to cross the road to avoid the annoying beagles that we haven’t bonded with, despite being practically neighbours. Right into Reel Street, a short unremarkable street. Bernie checks out the hidden treasures beneath tufts of grass, then blesses them as only a boy dog with a Napoleon complex can do. Then it’s left into Sea Breeze, a more ambitious thoroughfare. It takes us just a little closer to the ocean then hooks around dramatically to the right and up an incline which I think of always as a bloody great hill. I don’t mention this to anyone I might be walking with along Sea Breeze, including Bernie, because it really is just an incline. However, the halcyon days of fitness and striding up any kind of road that has an angle associated with it, slipped away about June last year. So I always prepare for the Sea Breeze hill.

Two days running Bernie and I took the Sea Breeze challenge. It must have been April or May. On the first day we passed a woman out for a walk, or perhaps returning from one. She smiled as we passed, and possibly made a friendly remark. Possibly I grunted a reply – I might have been concentrating more on the incline that the foot traffic going in the opposite direction. I can’t exactly recall, but Bernie probably barked – he has form in that regard.

On the second day, our process through the streets was uneventful – Spear, Reel, Sea Breeze, Zephyr Court, Stuart Street, sit/wait/cross – Surf Beach Rd, Stuart St continued – BEACH!!! Bark, bark, bark, dig, dig, dig, chase, splash, chase, splash, ignore commands, respond to commands, treat, dig, dig, dig. Time to go home.

We are struggling just a little bit on the return journey. The Sea Breeze incline has turned into an even bigger hill on the way home. Bernie sees the stranger approaching us as I set the snail pace. It’s the friendly face from yesterday. She and Bernie strike up a conversation – he’s good like that. I catch my breath in subtle gasps – it’s barely a slope for god’s sake. I join in the conversation.

Lorna tells me about her archeologist husband and the book he is writing and their recent trip to New Zealand and their two sons, and the grandchildren who bring joy to their lives. We swap our Cape Paterson origin stories and I find myself sharing, with this stranger, a little of my health travails. She is warm and kind and a good listener. Maybe 15 minutes pass. We are at the crest of the little hill, in the middle of the road. The conversation undulates like the landscape, and pokes into surprising crevices and crannies, swept along by the ocean breeze on a glorious Cape Paterson day. Bernie re-enters the conversation – it feels like it’s time to head home.

Our paths haven’t crossed again since then. I know where Lorna and her husband live now – on a corner of the unremarkable Reel Street – and sometimes, when I’m passing, I cut through her front yard. I don’t think she’d mind. Friends can do that.

 

#2 Glorious chaos in real time

The house is a mess! Not unusual I guess, but it’s hard to get past it; the couch, is covered with several protective layers, the floor, punctuated with doggie beds and toys, has been swept several times today but is still caked with a resilient layer of backyard mud. We are the Cape Paterson (temporary) kennels and menagerie this week: start with two cats, add an energetic puppy, and then invite a canine friend for a week-long sleepover. Welcome Kenya, the gorgeous six year old blonde labradoodle. In Bernie Sanders land, she is a giant. She is Brienne of Tarth to Bernie’s Tyrion Lannister (for the Game of Throne’s aficionados

–for those who aren’t familiar with Game of Thrones, let’s put it this way. Kenya is well, Kenya, and Bernie is Swaziland.)

Doggie walking with Kenya and Bernie is a triumph in slapstick. On the second walk, in a stroke of inspiration, I bring two tennis balls to the beach – these are two dogs that don’t care to share. It’s high tide on Undertow Bay – a beautiful winter afternoon of crashing waves and thunderous, threatening clouds of steel grey set against the deep, deep blue of almost dusk. Here Kenya, a ball for you – she bounds down the beach, snatches the ball from the shallow waters, Bernie chases – an exercise in futility. Drop the ball Kenya, here Bernie have the blue ball, drop the yellow ball Kenya, treat… here Kenya, fetch, Bernie go get the ball out of the water…oh, ok good Kenya, but where’s the blue ball – it’s out there, on the way to Tasmania. Go get the blue ball Kenya, look Bernie here’s the yellow ball. Yellow ball, blue ball, watch out for the waves, run, come back, where’s the blue ball? Who’s on first? I don’t know. There’s bounding and barking and rolling and digging, yellow ball, blue ball, treats, waves, splashes of rain, time to go. I’m hiding the ball – who thought that would be a good idea – back in the car. Kenya in the back, Bernie in the passenger seat, I’m in the driver’s seat – really? I don’t think so.

Back in real time, the house is still messy, but quiet. Kenya has been reunited with her loving owner. Bernie is sprawled on the couch, knackered from ‘entertaining’ his guest, the kennels are closed for now. The cats breathe a sigh of relief.

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#3 Bill sends his love

Bill is out of action this week. He is battling the flu that’s been doing the rounds this winter. I’ve told him, hang in there Bill, it’s a journey…

He’ll be back on deck next time.

Lots of love from us both

 

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If it’s Thursday it must be raining – a Cape idyll

Chris and Bill Reboot the Blog

We’re back!!!

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10 July 2017

…just on a year ago, Bill and I started writing a blog to share with family and friends. The main topic of conversation – the new life we found ourselves living when cancer came to visit. Then,  six months on, we put the blog on the shelf. The treatment was done, the scans were done, there was an old life to resume.

Of course, that’s not how these things work, we discovered. We’re still living the new life, Part 2. We hoped the uninvited guest of 2016 had packed their bags and gone overseas, while it turns out they’d just popped down to the shops to buy a few things and were back by tea time. So we continue to learn more of the lessons meted out when you’re enrolled in the living-with-cancer course.

Lots has happened in the several months since we started our weekly, then fortnightly, then whenever we get around to it, blog – much too much to fill you in on here. Let it be sufficient to say that there have been some truly memorable highlights – Christmas holidays with family: the red corolla continues to drive up Spear Street on a daily basis; a significant birthday celebration sprawled over 5 acres one glorious, if slightly drizzly, Saturday afternoon/evening; a Qld island holiday where wild dolphins were fed and the gross national product of Mexico was bolstered through the necessary consumption of tequila disguised as margarita slurpies; luncheswithfriends; dinnerswithfriends; afternoonteaswithfriends; bruncheswithfriends; and many many fruitless attempts at training a lovable but recalcitrant schnoodle named Bernie Sanders – yes, that is a highlight! Etc Etc

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It’s true too that there have been some lowlights over the last few months as well – some family crises; some encounters with bureaucracy; and of course, the knock at the door in March when our uninvited visitor decided to pop back in for another catch-up. And then, in between the highlights and the lowlights, there is the waiting. That’s been the defining characteristic of these last months, and ultimately, the greatest motivating factor for the blog reboot. I’m not by nature or reputation the most patient of individuals, so several months of Waiting has been both instructive and infuriating. So, I thought I might share some of my thoughts on this particular experience of Waiting – unlike any other I’ve encountered in my life (including those 38 hours in labour waiting for the birth of the beloved Emma). Bill might like to add something to this blog, but I haven’t discussed it with him yet – waiting for him to surface after a very late night working on his podcast.

Waiting – or how a quiet, relaxing year sitting on a comfy couch at the beach house becomes a year of sitting on the edge of wooden straight backed chair, waiting for the phone to ring.

A little bit of context for those of you who may have missed some of this year’s sporadic updates. Back in March, when Oliver, who you may remember as the lovely, if slightly rumpled oncologist from last year’s blog, let us know that there would indeed be more action (stressing no urgency) on the cancer treatment front this year, he was able to offer the most exciting of options – a clinical immunotherapy trial that would be starting in April. As Oliver was one of the clinicians leading this trial he was confident that it would be a very good treatment option, and that I would be a very good candidate to be selected for this particular, rare cancer trial. Did you notice that I mentioned in that last (very long and convoluted ) sentence that he said ‘starting in April’? Did you notice that? I did. Bill did. Just checked my calendar and it’s now JULY!!!! Has the trial started yet? NO!!! Is that okay with us? NO!!! How are we coping with the delays? GREAT, thanks for asking…

That’s how the quality of time shifts due to the context in which one lives. In essence, my plan was to spend this year in Cape Paterson, enjoying the regenerative qualities of the southern ocean and our beautiful beaches, experiencing the joys of our crazy, demanding puppy alongside our inept

puppy-parenting, working on small projects, reading, writing, binge-watching the latest dark brooding British detective shows on the telly – you get the idea. And this year, to date, in addition to some travel, lots of trips to Melbourne, and the ‘big birthday’, I’ve been relishing all the various activities I had planned for my 2017 ‘gap year’, but now, it’s under the banner of ‘waiting’.

When Waiting, time becomes framed by the dates on the calendar – the next scan, the next blood test and the next doctor’s appointment – the one when we fill out the paperwork for the trial and get started on the screening which precedes the actual trial. It’s easy to forget to enjoy the beautiful beach, the drinks with friends, the antics of the naughty puppy, because you’re looking over shoulders to see the calendar on the wall with the next date circled. When that next day happens, you’ll be getting on with things, you’ll be taking action.

And when the next appointment doesn’t yield the expected outcome – then it’s back to waiting.

Did I mention that I’m not good at waiting. But I’m learning, and so is Bill. Just like there is lots to be learnt when living day to day with chemo, there are just as many lessons in the pre-treatment limbo. Take today for example – it’s a glorious mid-winter day here in Cape. The sun shines on our back deck, where Bernie and I slouch – on a comfy couch – I type on my laptop, he dreams of conquests over the creatures who live in the sand. Somehow I’ve found my way back to writing again – one of the lessons of waiting reveals itself – living in the moment may require stillness as often as it requires action. There might just be another lesson coming along any minute… or not.

Actually, I hope there is another lesson coming – we’ve just bought a pressure cooker and I’m really hoping it’s sufficiently intuitive to operate to allow me to cook the ham hocks in the fridge. If not, any and all lessons on pressure cookers are welcome.

Coda: This week is an appointment week. Friday is circled on the calendar. We’re hoping there is news of the trial. And whether there is or not, we’ll take a walk along Undertow Bay, sit by the fire, sipping on the warm hearty soup we’ve just made in our new pressure cooker.  And now, a word from Bill…

From Bill:

I’m sitting with my wife, in front of a fire…smelling a bit of “dog”, as Bernie the backyard Socialist has been turning the backyard into Salvador Dali’s golf course. We are tired of waiting but are grateful for the good health and good friends. Going back to Monbulk next week…looking forward to teaching, but wish I knew the future.

Carry on…..

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Cape Paterson at sunset and moonrise July 2017
Chris and Bill Reboot the Blog

So this is Christmas…

Another cool December day in Cape Paterson. Apparently things will be heating up for Christmas. It’s quiet in the house – Bill is having a sleep in, Bernie too, is not a ‘morning dog’, so he’s having his mid-morning nap on the couch next to me. I’m contemplating getting started on my Christmas shopping (it’s only 21 December, so I don’t want to rush into anything, but I would like to put up a Christmas tree!)
You may have noticed a long pause in the Chris and Bill blog, during December. Well this was to be expected when the treatment wrapped up a while ago now. After all, that was very much the galvanizing factor for writing the blog – to share the trials, tribulations and triumphs of the weekly chemo, which was at the very centre of the cancer treatment. These last few weeks, post-chemo, have added a new chapter to the saga, so I thought it might be time to revisit the blog, and also to touch base just before Christmas with all of you, our most marvelous friends and family.

The end of chemo, and subsequently the end of working on the play propelled Bill and I out of the ‘new normal’ we had adjusted to, and into a kind of suspended life of waiting. There was a four week period between the end of treatment and the tests scheduled at the beginning of December – these were the tests that would reveal whether the surgery and chemo had done its job. Despite lots of encouraging signs along the way, this waiting time was not the most edifying period to go through. The play was done; we didn’t have any weekly trips to Berwick to punctuate the week; not even anymore weekly visits to Wonthaggi hospital for blood tests – just weary, post-production down time. And, the anxious contemplation of our appointment with Oliver on 5 December.

Well, as many of you now know, we survived the suspense, and eventually our meeting with Oliver arrived. The news was good – tests unremarkable. My first response – almost nothing. After weeks (months really) of contemplating this moment, it took way more than a minute or two to understand that for now, the rollercoaster had pulled into the station and, at least for now, I could think about a daily life that is not defined by the cloud that cancer inevitably hangs over your head. Almost imperceptibly, I breathed out – six months is a long time to hold your breath. That was my first response. Then, I asked Bill to take me to the pub. I really needed a drink!

In the days and weeks that have followed, I’ve taken to enjoying the return of good health, including the return of appetite and taste, to marvel at fluffy fuzz that is appearing on my head – you couldn’t call it hair just yet, and to thinking about the arrival of 2017, a better year. And, I’ve squeezed in lightning trip to Brisbane to see my Mum Jill, brother David, cousin Jill and friend Peg, as well as visiting with my friend Marion and being her guest at the Cricket Australia box at the Australia-Pakistan Test (so that’s how the other half live!) – very brief but all very enjoyable. Yep, life is rich and full.
It’s almost Christmas and we are looking forward to spending time with our children, our friends and family who’ll be in the vicinity of Cape during the holidays. We have done very little in the way of preparations for Christmas festivities, and somehow, that doesn’t seem to matter. This year certainly isn’t about presents, and even fine food – well, I think you probably all have a pretty good idea what this Christmas is about – enjoying the new ‘new normal’. We are profoundly grateful for the friends and family who have signed on this year to buffer us from the many psychic bumps and abrasions we’ve experienced while spending the last half year in a hurtling rollercoaster. That’s you. Thank you. And in the immortal words of John Lennon and Yoko Ono:

So this is Christmas
And what have you done
Another year over
And a new one just begun
And so this is Christmas
I hope you have fun
The near and the dear one
The old and the young
A very Merry Christmas
And a happy new year
Let’s hope it’s a good one
Without any fear

And for our world, which is in so much trouble this year, more words from John and Yoko

And so this is Christmas
For weak and for strong
For rich and the poor ones
The world is so wrong
And so happy Christmas
For black and for white
For yellow and red ones
Let’s stop all the fight
A very Merry Christmas
And a happy new year
Let’s hope it’s a good one
Without any fear
War is over, if you want it
War is over now
Happy Christmas

Lots of love, chris and bill

So this is Christmas…

It’s a wrap… and then we move on

Week 19 +

What, we hear you exclaim, Week 19!! What happened to Week 18 and does that mean that the saga continues?

Well, not really, just wanted to get your attention and divert you from making the observation that this weekly blog is becoming more and more like a random, every-now-and-then-we’ll-post-something, blog.

Well, it’s yet another overcast, chilly day in Cape Paterson. The rumour of Spring, yep, is still a rumour, though I believe the Weather Bureau is hinting at a 30 degree day later in the week – hah, as if.

It’s been a momentous couple of weeks in the Sinclair-Ten Eyck household though I guess we aren’t the only people who’ve noticed that there’s just been an election (ie. a cataclysm) in recent times. Such is the magnitude of the disaster that has recently befallen the USA – unless you’ve been living in a very deep cave underground, I think you’ll know which disaster I’m referring to – so, such is the magnitude of this disaster that I’ve resorted to a couple of key survival measures. The first, stop watching CNN and any other news outlets that are likely to be covering the election results, and the second, not mentioning manchild pretender to the American throne by name, at least until Michael Moore has his way and impeachment proceedings are underway. Good, that’s the election out of the way, so now I can turn, in the spirit of Jane Austen, to the domestic world which preoccupies us, at least when the political world doesn’t…

Actually, I tell a lie – the political world totally preoccupies Bill, so technically speaking, I’m only representing half of the blog-generators.

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It’s now two whole weeks since Week 18, the last day of cycle six of chemo at St John of God. What a strange, memorable yet unremarkable day that turned out to be. Having plodded through the penultimate week, Week 17, with the usual balance of side effects vs distractions, my feelings about arriving at Week 18 were surprisingly mixed. I was soooo ready for the end of the minor irritations of taxol side effects – fatigue, the pins and needles and numbness combo in fingers and toes, and the very sore mouth (no fun at all) – that this last week couldn’t come quickly enough. And yet, I was surprised by a sense of loss – no more weekly routine, no more Mondays spent with the lovely women who run the SJOG oncology centre, no more regular conversations with Oliver, no more checking in with the Wonthaggi Hospital each Thursday to ‘do the bloods’ and confer about the weather; and so on. I’ve heard from others who’ve been down the same track as I’ve been on that the end of treatment can come as somewhat of a shock, but, still I wasn’t expecting the whirlwind of emotions that accompanied the last day of treatment: relief, sadness, excitement, exhaustion, trepidation, gratitude – and other feelings more difficult to name. And that describes the first five minutes of arriving at Berwick two Mondays ago. The next five minutes, after having settled into my chair, were even more surprising because I learned that Oliver had decided to cancel the treatment – so, there was no Week 18 and my session at SJOG consisted of a cup of tea, some lunch, even an ice cream, a chat about the end of treatment with two of my favourite nurses, Monica and Ros, and yes… the Happy Last Treatment song. When I heard that the treatment was to be cancelled my first thought was, but what about the song? And between you and me, as it was the day before Melbourne Cup and lots of people were away, I think there was a chance that the song would be forgotten, but at the very last minute, Ros the nurse, realized that this was indeed my last treatment, so she rounded up the only other available nurse, Monica and they did the duet version of Happy Last Treatment. So there you have it, after eighteen weeks of making the 1 hour and 14 minute trip to Berwick, this part of the big (don’t call it a journey) ‘adventure’ has wrapped. Now comes the nervous wait for the scans, due to happen at the end of November, and a reunion with Oliver, where he will tell me what the scans reveal and we’ll talk about what comes next – hopefully, no more treatment for now and a review appointment in a few months; or, whatever else he has up his sleeve for me…

As some of you who live in the Melbourne area will know, Week 18 was rapidly superseded by the events of Week 19 (no, not the election, which I refuse to talk about) but the play. The entire Ten Eyck- Sinclair family, including Bernie had a very hectic week preparing for Last Call at La Mama. Admittedly, Bernie’s busy week consisted of going to the Kennels and playing with every available dog on the premises. Apparently, Bernie’s ‘Energiser Bunny’ approach to life meant that he only got to spend a limited amount of time with each of the other dogs, who wearied rather quickly of his boundless enthusiasm and unstoppable optimism.

For the rest of us, our hectic week involved lots of rehearsal, complex logistics around getting the carved wooden bar we’d purchased for our set into the La Mama premises, finding parking in Carlton –always a challenge, and working out how to cue the actors’ entrances from outside the big heavy, relatively soundproof front door of the theatre.   Time was tight for what we were hoping to do: our actors and crew were squeezing the play in amongst their work commitments and daily life; and, our play had lots of words, quite a few technical requirements, including original music to be recorded, and a ridiculous number of props. And yet, come Monday 7th Nov, somehow we were ready.

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There are many things I could say about doing this play, but for this blog, and in the interests of full disclosure, the three things that I’d like to mention are these

  • we made a play that we are proud of – some fine acting and writing, and in this play the bad guy politician pays the price, unlike in real life.
  • Each night La Mama was overflowing with our beautiful friends and family – that was something to behold. Yet another reminder of how amazing, and generous and giving our family and friends are – life truly is rich and full and the courtyard at La Mama last week, reminded us of that. A thousand thank you’s to all of you who came, or tried to come but couldn’t make it or couldn’t get tickets, or thought about coming, or, didn’t think about coming, but were curious about what it would be like to come… we love you all.
  • Our beautiful family. It was an amazing thing to do this play with our children – Emma and Robbie, our generous and talented children who filled us with pride each night. And now I can’t find the words to describe what that meant to me – what a gift. Thank you, gorgeous children.

Oh, and there’s a fourth thing – we were also fortunate enough to work with our favourite actress from the Dandenongs, Sharon Corbier – we think she is amazing, and were so lucky that she said yes to the play. And a fifth thing – Bill’s many years at Monbulk brought some great karma to our show – three ex-students also agreed to be part of the production – James talented young actor; John, budding stage manager; and Jess, tech wizard extraordinaire.

I know that Bill is planning to jump onto the blog and write about the play and other matters that are preoccupying him of late, but he’s a little bit busy at the moment  appearing on your TV screens in the Christmas Aldi ad, signing autographs  and taking calls from ‘the Coast’ (ie. L.A.) about the movie rights for Last Call, so it might take him a few days to add his contribution to Week 19, but it’s definitely in his schedule.

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This is the Aldi ad cast, not the cast from Last Call.

 

And one final thought from me. Together, that’s you out there in blog land, and Bill and I we’ve made it to the end of the chemo ‘journey’. Thanks for coming along, we couldn’t have done it without you. Really, we couldn’t. And we’re not done yet, so what to do about the blog? Well, I’m not sure we’ve got much to say on a weekly basis, but hey, we’ll check in from time to time, and let you know how we’re travelling. After all, if for nothing else, I’m sure you’ll be anxious to receive updates on the exploits of Bernie the Superpuppy, so stay tuned.

And in the meantime, love and hugs from Cape Paterson.

 

 

It’s a wrap… and then we move on

Living in the bubble, and beyond

 

Week 17, Cycle 6, Day 7 ++++

 

Another chilly overcast day in Cape Paterson. The hint of Spring is proving to be just that, a rumour. I contemplated sitting on the deck this morning, but only fleetingly. Perhaps next week will be kinder. There’s a certain sameness in these days – slow starts in the morning, disappointment at the weather, making mental lists about catching up on the laundry, books for book group, tending to the little back yard garden bed, pulling out the weeds, finishing my taxes…

And yet, bubbling under the surface, change is afoot and it’s palpable. Next week is the last week of chemo. The possibility of an early end to the weekly treatments didn’t eventuate – and while I still can’t feel the tips of my fingers and toes, this is fine with me. I figure I’ve come this far, I may as well stay the course til the very end of the 18 weeks, and that’s the conclusion Oliver came to as well. Plenty of time over the summer for the nerve endings to heal and as long as there’s always someone around to open the bottles of wine I plan to consume, I won’t be bothered by any lingering pins and needles in my extremities.

While I was sitting on my big green chair at SJOG on Monday I was struck with that paradoxical experience where time expands and contracts at the same time. It felt like I’d been spending every Monday in that chair for ever, while at the same time, this 18 weeks is over in a blink. So in the midst of the familiarity of the weekly routine – checking in with the clerical staff, Mardi and Gladys; then checking in with Monica, the nurse in charge, who allocates me to a chair; then the preliminary conversation with the nurse who’ll be taking care of the drug infusion; then the medical rituals begin (you know the drill – I think we’ve covered this quite a lot in the blog); this followed by the various drop-ins: Di the volunteer offering lunch and a cuppa (no tomato on the sandwiches please); Oliver with an update on the treatment, the blood tests, the side effects; maybe then Sunny the pharmacist with the latest drug solution to the latest side effect – in the midst of all of this, on Monday I was powerfully aware that the ground had shifted. I had conversations with two of my fellow patients, which was welcome but quite unusual – as if I was now ‘part of the furniture’. And what I was most aware of, it’s time to contemplate life after treatment.

Since things turned upside down in our world at the beginning of June, we really haven’t attended to much but the day to day. Our energy and focus has been on recovery, rest and wellness. It’s been like living in a bubble – not a bad thing at all. The world is small, insulated by love and friendship, punctuated by the necessities of treatment, and framed by two big dates Monday 31 Oct, last day at SJOG and the scan scheduled for the end of November.   Well, it seems that it is possible to take tentative steps beyond the bubble. To think about summer in Cape, about whether this year will be the year I buy a wet suit so I can swim in the ocean more, about when Em and Rob might be able to come and visit, about how we’ll squeeze in the visitors who we hope will drop by over Christmas and New Year, about whether a party is in order for our 30th wedding anniversary in January. These thoughts are now stretching the bubble – if Spring was a rumour, that’s okay, just bring on Summer.

In the meantime, the play is imminent. Such is the seriousness of our endeavour, we’ve moved our rehearsals to Bill’s old stomping ground, Monbulk College theatre, and Bernie no longer ‘helps’ with rehearsals. And, we’ve even booked little Bernie into a boarding kennel for the week of the show. Not sure how that’s going to go, though I’m more concerned with my own separation anxiety, and perhaps, the resilience of the dogs that Bernie gets to play with while he’s there. Suffice it to say that our Bernie might just be a high-maintenance kind of dog.

This week we also had a family outing, with all four of us making the trip to the big city to see our friend Steven Hall starring in the stage show of Fawlty Towers. It’s one of my favourite things to do, going to a stage show in town with the kids – a rare treat but always memorable.

And now, here’s the space where Bill writes his contribution to the blog. He still seems to be awol in the blogosphere however, so I’ll give you a few highlights from his week … here’s me stepping into Bill’s size 12 shoes…

  • Saw my friend Steven do Basil Fawlty, then got to drink with him after – bliss
  • Watched requisite 250 hours of CNN, just in case Donald Trump had stopped being a narcissistic sociopath, and Hillary Clinton had handed over the Democratic Party presidential nomination to Bernie Sanders (the two legged version)
  • Spent another 250 hours in the trailer learning lines for Last Call, wishing to hell that the playwright hadn’t given my character so many damn lines… oh, that’s right, I am the playwright.
  • Rehearse, rehearse, rehearse
  • Recorded Episode161 of the Bill Show podcast with Randy. Have to keep the followers up to date – they too want to be the first to know if Donald Trump stops being a narcissistic sociopath, and Hillary Clinton hands over the Democratic Party presidential nomination to Bernie Sanders.
  • Rehearse, rehearse, rehearse
  • Wash the dishes, light the fire, walk the dog, kiss the wife, cook the dinner, watch CNN, rehearse, rehearse, rehearse.

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Yes, indeed, life is rich and full, even in the bubble

Lots of love, Chris and Bill

 

Living in the bubble, and beyond

Business as usual: or, where did I put that zen and what happened to Spring?

Week 15 – Cycle Five, Day 15…

It’s a chilly October Wednesday in Cape Paterson. As I type this on my little MacBook Air I marvel at the experience of tapping the keyboard without actually being able to feel the tips of my fingers – just a little zing as each finger taps a key. I guess that means that even in the smallest moments of the day, doing ordinary things, there are little reminders of the changes that have occurred in my body while it hosts the toxic chemicals that are currently my best friends.

Another small, iconic moment while I write – Bernie, the super puppy, comes trotting in from the backyard with the bone he scored just an hour ago – he deposits it at my feet and then he snuggles down next to me. Bernie doesn’t like to be too far away for too long – from his current bone, or from his current Favourite Human. For Bernie, there is an ever changing landscape of yummy, smelly chewy things, and favourite humans. The qualifications to be current Favourite Human seem to be based on the human’s willingness to adore the amazing Bernie, the availability of treats in pockets, and/or understanding that taking Bernie out for a walk is a privilege indeed.

 

 

Due to present circumstances, I do get to be Favourite Human quite often. I would like to clarify however, that Bernie doesn’t always get to be Favourite Puppy. For example, when he tips over a person’s yoghurt and cereal onto the floor and when he takes his sharp little puppy teeth and digs them into a person’s feet or hands, in the mistaken belief that these moving objects are brand new toys; and when he harasses unsuspecting cats as they are minding their own business. I think you might get the idea – the key word here is ‘puppy’ – yes, this not so little puppy is still in the very much in ‘toddler world’ – impulsive, mischievous, easily bored, easily entertained, joyful, loving, and, most important of all, perennially optimistic.

 

At the risk of repeating myself, here we are in the midst of another quiet week at Cape Paterson. It is remarkable to me that the end of the 18 week chemo treatment is drawing to a close. Monday’s session saw the end of Cycle 5.

The big news from St John of God this week is that we might be closer to the end of treatment than we thought, and it’s all due to those toes and fingers that are currently devoid of feeling. Pins and needles and loss of feeling in extremities are common side effects of the chemo and this is something that I’ve been experiencing for a while now. It’s a weird sensation, but not particularly distressing from my perspective – a small cost in the big scheme of things. Oliver however, thinks it might be worth calling off the last two chemo sessions to give the fingers and toes a chance to recover from the potential nerve damage. My take was that it’s okay, Oliver, I don’t play guitar and I don’t run – so no problem… Anyway, this means that next Monday could possibly be the final chemo session – or not. I’m just a tiny bit concerned that if Oliver makes that call next Monday the nurses won’t have enough notice to prepare for the singing of the Happy Last Chemo song for me – which, as you know, I’ve been waiting on for a long time. Stay tuned (no pun intended – really, there is nothing tuneful about the singing of this song!)

But back to the quiet week… perhaps it’s not so much that this has been a quiet week, but there’s not too much that you haven’t heard before – visitors, walks on the beach, rehearsals for the play, naughty Bernie incidents, cute Bernie incidents, unseasonal weather – you get the idea. Just in case you’ve forgotten, or love these little moments of zen, here’s a few snapshots from the week.

Visitors – last week Bill went to Sydney to hang out in the showbiz world while he made the Aldi ad. In the meantime, I had a week of lovely visitors and these were the kind of visitors who made the breakfast, did the washing up, chopped the firewood, walked the dog, and folded the laundry.

Robbie and I had the luxury of long conversations, yummy food made by him, watching the entire season six of Ru Paul’s Drag Race and the US Presidential debate and the wonderful movie What Maisie Knew. And for a couple of days, we also had Rob’s partner Giacomo staying as well – a real treat for me to be in the company of two gorgeous young men.

And then there was Dee. We even managed to do the things we usually do when we get together – drink champagne (I’m trying to get back into practice); chat (no practice needed); cook (no, only kidding- we went out to dinner). And in amongst this busy schedule, Dee managed to take Bernie for walks, wash the dishes and take care of me, whether I needed it or not!

Rehearsals. Despite the leading man’s absence, rehearsals continued. Saturday afternoon, in Emma’s kitchen, two of the younger actors in our cast, James and Emma worked the opening scene of the play. It’s exciting working with talented actors, who don’t mind the hard work of getting to know a scene and getting to know their characters. Week by week, the play is starting to take shape. Last week I attended the Launch of the Explorations Season at La Mama – it reminded me of a few things – the play is getting closer, La Mama is a brilliant place and unique in the way it supports artists, it’s cool to be part of the Explorations season, and wow, the La Mama stage is tiny.

Puppy zen. There’s no shortage of Bernie moments each day. Our all time favourite is the ‘meal time dance’. Bernie is totally food obsessed and mealtimes are the all time favourite events in his day. From the moment the food goes into his bowl til it is placed on the floor for the 8 seconds it takes for him to consume it, Bernie bounces in a dance of joy and excitement. It makes us laugh every time.

As we know, life here in Cape Paterson is rich and full

Bill zen. Bill’s is still basking in the afterglow of his week in Sydney, as is managing to maintain his zen right through this week, when he has diverted his talents from making an ad for Aldi to shaping young minds at Wonthaggi Secondary College.

In his spare moments, the play is taking up much of his attention. His message to our dear friends and family who are reading the blog, ‘don’t forget to book for Last Call. Tickets are selling fast!!!’. Here are the links to the La Mama venue so you can find where the play is on, the Spring Program site, so you can read our publicity blurb and to Try Booking, so you can book if your curiosity has the better of you.

La Mama venue

About the play

TryBooking for Last Call

last-call-poster

 

 

 

 

 

 

 

 

Business as usual: or, where did I put that zen and what happened to Spring?