Sunday, March 22, 2020

An update...for friends & family

Hi everyone,

I am a terrible blogger. My last post on here was in 2017.

With everything that's going on currently, I've felt the need to try again.

This post is for mainly for myself, to try to get my thoughts in some kind of order, but it's also for those beautiful friends I've made on social media (you know who you are) and also for family and friends that I rarely see because of distance or other reasons.

Many of you will know that 15 years ago I battled breast cancer. Mastectomy, lymph node clearance, chemotherapy, and then surgeries for reconstruction a few years later.

In January of this year I learned that my cancer had returned, spread to my sternum and was now stage 4. To say that I was devastated doesn't even begin to describe how I felt. After 15 years cancer free this was a shock of massive proportion. I believed with all my heart that I had beaten it. Telling my family was the hardest thing I've ever had to do. Harder even than the first time around.
Needless to say, they have been beyond incredible in their love and support.

Many, many tests and scans later, I learned the following: The cancer in my sternum is significant in size, but it hasn't spread anywhere else in my body. Localised spread. This makes it possible for me to benefit from radiation therapy, 10 sessions over 2 weeks, which I begin next Wednesday.

According to the results of the core biopsy, the cancer is still hormone receptor positive.
This means I also benefit from hormone therapy which I began just over a month ago. After the radiotherapy has finished I will also be starting systemic chemotherapy to target and kill any free floating micro cancer cells.

On top of all this, I will have a bone-building drug injected every month, to strengthen my bones and hopefully prevent new bone mets from forming.

Yep, it's a lot.

My oncologist and radiographer are amazing. They are honest but very positive and have assured me that I'm not about to kick off anytime soon. The cancer is pretty slow growing...it took 15 years to get to this point, so the aim is to shrink it as much as possible and continue to manage it for the rest of my life.

Don't get me wrong, this all sucks big time. It's no longer "curable". But I really am doing ok. I feel perfectly well and the panic that I endured the first time around when my kids were little (youngest was 5!) is thankfully absent this time. Of course I still worry for them, but it's a different feeling when they've all grown into strong, capable adults.

The cancer was discovered by accident while being treated for an unrelated health issue. If not for that, and for my outstanding doctor, Roy Francis, I likely would still not even know I had it! After a couple of weeks in borderline depression, my natural optimism and love for life kicked back in. It's just not my default position to be negative and defeated. I love my life, my family and my friends and I've never taken any of it for granted. Now, more than ever, it's time to live to the fullest, to prioritise and yes, to make ART!!

It's strange really...I always thought that if I was given a shorter time to live I'd want to go crazy and travel to exotic places and do all those 'bucket listy' things I think about sometimes.

But I don't.

I want to be with my husband, my kids, my sister and my friends, to listen to music and watch comfort TV and movies, to be in the garden, to be in the studio, to read. All the simple things that make me so, so happy.

Funny, life.

Of course, I have sad days. I even have angry days. But, they don't last long and for that I'm grateful.  I have enormous support and I'm much, much tougher than I appear.

I know it's not like this for everyone.

Something else I must acknowledge before I go any further - our healthcare system. None of my treatment, and I mean absolutely none, has cost me a cent. I have many things to worry about, but how I'll pay for the medical care to prolong my life is not one of them. My care team and every single medical worker, from doctors and nurses to reception and office staff, have been caring and professional and have bent over backwards to answer all my questions and address my concerns. And man, are they under pressure at the moment :(((

Universal Health Care is the best.

Of course our system is not perfect, but the thought of being without it, like my American friends, is frankly terrifying. I do so hope that change is coming for them in November.

So that is how 2020 began for me. The 'advanced metastatic breast cancer in the bone' diagnoses would have been more than enough, thank you very much.

With timing that would be unbelievable if my life were a soap opera, my best friend in the world and the sweetest most talented person on the planet was diagnosed with her second recurrence of cancer AT THE SAME TIME!

Fuck.

So we're in this together.

Thankfully, we still spend more time laughing together than crying, but man, it can be rough. Every single day I wish with everything I have that this was not happening to her. She is so tiny and delicate and it's so unfair.

But on we go.

To that end, Guy and I have stepped up our caravan renovation and we are already planning camping trips with her and her husband for next year. This is a priority now. I love these conversations with her - she's such a nature girl and has so many wonderful places and sights to show us. We're looking forward to taking photographs and drawing plants together and soaking up our beautiful countryside and spectacular mountains. We're so excited.

Soon.

On the second weekend after my diagnosis, our beloved pug, Jasper, died.

We found him in the morning. He had suffered a heart attack in the night. My husband walked right past him thinking he was still sleeping. When Jasper didn't follow him into the workshop as he always did, Guy went back out to see what was up. He was lying on the soft grass right next to his kennel. He was almost 13 years old. Deaf and blind in his final couple of years, he navigated our house and yard expertly and was always happy, his tail held in a tight double curl. He'd been slowing down a lot over the past year and spent most of his days asleep in the special 'shed bed' that Guy built for him in the workshop. The loss hit all of us, but Guy and my son most of all. Noah was only eight when we brought Jasper home and they instantly bonded. Noah was patient and loving as a little boy and has remained so as a young man. He helped his dad bury Jasper in our garden. He is so missed.



And now we have COVID-19.

Of course, I am in the high risk group. Radiotherapy and chemotherapy put me at risk of complications even from a 'regular' flu...and this is NOT a regular flu.

So is my friend.

So is my son - he has a medical condition that requires monthly injections of an immuno-suppressant
to manage his symptoms.

My eldest daughter is a primary school teacher. Schools here in Australia are still open.

My youngest daughter works in retail. Her store is still open.

Guy is still working. He's a site supervisor in the building and construction industry and although he has put everything in place for health and safety at his job, I'm still worried. Thankfully he is outdoors much of the time and shares a large site office with only two other people. Meetings are cancelled or held over phone or Skype. He is pedantic with hygiene and limits any face-to-face contact with other workers as much as possible.

I wish he could just be at home with me, but I don't imagine the building industry will be closing down anytime soon.

At the moment, with all of this, I honestly feel like my cancer is the least of my worries.

Fortunately, the Uni courses I teach have transitioned to online learning using Zoom classrooms etc.
I am so lucky to be able to work from home and so happy to still be able to continue teaching my amazing students. My studio is also in my home and remains my happy place.

I'm pretty much isolating.

I only go out for treatment and thankfully can now completely avoid public transport. I'm even social-distancing from my kids. No hugging or kissing, no sitting too close. I hate it. We're a demonstrably affectionate family. It's so hard.

We are taking evening walks in the fresh air, for the sake of sanity.

Our small town has not been spared the ridiculous and selfish 'hoarders', the same as everywhere else. I've heard that people are driving up from the city to strip rural supermarkets bare of essentials and even our local butcher is overrun with non-locals demanding bulk kilos of meat. Wonderfully, our local butcher is a kick-ass babe who isn't afraid to show these folks the door :)

We are sensibly stocked and what we can't get, we do without. Fresh food is widely available at this point and we have all necessary medications, plus a little extra Panadol.

So that's where I am currently. I'm most definitely scared, but not too much I hope. I'm also incredibly grateful for so many things: modern medicine, Skype and other technologies that keep us visibly in touch with each other, for art and books and excellent streaming services, and for the kindness and consideration of the majority of the population. I'm also so grateful for social media. I basically disengaged with FB years ago (around the time of the 2016 US Election - such a dark day) and switched over to Instagram, but I've recently been checking back in and it's providing me with comfort (mostly) and some great laughs :) I just want to know that people are doing ok.

I don't want to end this post without also mentioning a few wonderful things that I experienced
earlier this year.

The first was seeing the incredible Amanda Palmer's "There Will Be No Intermission" show in Adelaide in mid February. She is hands down my favourite live performer and her heart and soul were laid bare during this performance.

After the show, she stayed back to talk with Patrons (I am proudly one) and to take a group photo. My husband was standing on the sidelines waiting for me, when Amanda recruited him to come up on the stage and take the photo. On her blog the next day she said he 'nailed it'.

He really did.

You can see me towards the back, bright pink hair :) A couple of days later she announced a small "ninja gig" for patrons and friends, which, of course, we attended, along with my eldest daughter and her partner. After the show I chatted with Amanda and we shared a long and deeply felt hug. It was good for my soul. I love her.





The next day, as a last minute, spur of the moment decision, I accompanied my youngest daughter and my two nephews on a "tree climb" adventure. I was very nervous and unsure about this. I'd only just got my sternum pain under control and honestly, even though I walk a lot, I'm just not very fit.
I was NOT confident that I could get through all the increasingly difficult courses. But I did! The final course in particular was very challenging, I was genuinely scared at some points...but I did it!
We all did! We were such a good team. I was bruised and sore for a week afterwards,
but so proud and surprised that I could push myself like that. I also surprised my sister, which is not easy to do! I actually can't wait to do it again, with Guy next time :)

High up in the trees with Archie leading the way.

Waiting our turn to zoom down the first of several flying foxes.

My face says it all here!



In early March I had my birthday and on the same day received a teaching award from UniSA.
I was pretty chuffed :)))



I had birthday dinner out with my wonderful family. My daughter Meg baked me a gorgeously delicious rainbow birthday cake,



and bought me a much longed for birthday present - perfect for curling up to read while gently swaying :)))



My other kids banded together to buy tickets to a fabulous Fringe show called "By A Thread" for me and my husband - it was breathtaking!



The following week we all went off to see the "Fire Gardens", a French Festival event held at night in the Adelaide Botanic Gardens - it was overwhelmingly beautiful, my dinky iPhone photos do not even begin to do the spectacle justice.

A huge, rotating fireball on the lake. A steel structure with flaming terracotta pots.

The entire garden was filled with wonderful structures.

Flaming arches.

This incredible artist was playing eerily moody cello music in this gorgeous steel and lantern filled structure.
I could have sat there happily all night.

The recently restored Victorian glasshouse was filled with floating, illuminated vests. Magical.

And lastly, a couple of weeks ago my sister adopted another gorgeous greyhound named Maude. She is the prettiest, sweetest girl. Makes me miss Jasper and long for a pup so badly.
Perhaps when all of this is over.

A good girl.


All in all, things are shit in the 'big picture', but the small picture still has a great deal of joy. I love my home and my studio, so being confined is no problem for me. I can still communicate with my friends and loved ones as often as I want by multiple means. I can continue to work.
I am never, ever bored.

I know this will end, eventually. There are always people doing it tougher, always ways that you can help people out, even if it's just by staying home, washing your hands (don't forget to moisturise!), shopping sensibly (and non-selfishly), being creative and genuinely considering other people.

I'm planning to blog more. It helps me to get this stuff out, and I'm not really great at short FB or Instagram statuses. Never been good at 'small-talk' either :) I have A LOT of projects in the works, and this is the perfect opportunity to share :)

Please stay safe everyone. Love to you all and see you again soon!