Cycle 4 Day 4: Dying of Laughter

On Day 4 of the retreat I woke with a smile. 

The first few days really reiterated what I already believe. Mind body medicine is real and important for healing. Chronic underlying stress is bad, good nutrition can heal, and meditation is one of the keys to calming excessive thinking and allow more presence into your life. 

As per normal my emotions have been high and low, especially after chemo, but I was never bored or checking my watch. I’d actively take notes. Keen to remember the words, which have provide renewed clarity. Everything that is communicated is backed by science or is well researched. It’s what I’ve been looking for. I have a new found love in Qi Gong, dandelion coffee and flaxseed oil on my porridge. I haven’t eaten so much in my life and I realise how lacking my ‘pescetarian’ diet has been. 

But I woke with a smile because of a session we had the day before -‘Laughter and your Inner Child’. I was in need of a lift after some dark dreams and strange meditation imagery. I was hopeful that this session could break down a few barriers and get me to have a real laugh. I was not disappointed.

Laughter has been shown to boost certain immune cells but I was pleased to learn that even a fake smile can trick you brain into releasing happy hormones into your bloodstream. 

Siegfried, our teacher/facilitator/therapist, was your typical German businessman. He looked and talked like Grandad Bill, but this is where the similarities ended. He was in IT and wore a lot of expensive Hugo Boss suits. He had it all. A high flying career, a growing family and his health. 

I am not sure how he came to work at the Gawler Foundation but in the late 90s he was asked to pick up Patch Adams (the Amercian clown doctor) from the airport and bring him out to the property. Patch was giving a workshop for health professionals that had been organised by the Gawler Foundation. On the drive Siegfried became intrigued with this man, his ideas and his lifestyle. So much so that he decided he would participate in the four day workshop. He was obviously moved by what he learnt as for the next 12 years he wore a clown suit everyday, everywhere he went! Odd coloured shoes, ‘fat pants’, mis-matched socks, colourful shirts, a crocheted hat and even the red nose. To work, to dinner, downtown, on planes, everywhere! I laughed uncontrollably at the thought of Siegfried (dressed as himself – a clown) and Ian Gawler (who has one leg and wears a kaftan) going into the small country town to apply for a bank loan. Or Siegfried clearing queues at airports by pulling his pants above his head and barking like a dog. Makes me giggle now. 

Life was too serious and this enabled him to bring joy back into his life. He wanted to get back in touch with his inner boy and this was his way of doing it. He read out a poem he’d written. I cried my eyes out. It was beautiful. His little boy had spoken to my little girl.  It touched my heart. Here is a snippet:

Siggi came into this world full of trust and joy…..

At the end of his childhood Siggi was bruised and scarred…..Joy and trust had given way to serious striving for outer success. Siggi was forgotten and went hiding deeper and deeper……

Siggi…after 40 years of hiding enjoys the warm autumn sun…tickling the clouds….barking!

The new friend is my oldest friend….. 

We hold each other tightly and cry….A magical force lifts us up….open our arms to the world and dance a wild dance. Fully alive, present in the moment, open, trusting, joyful, playful…

Siggi and I make a vow. We are going to spend the rest of our lives in each other’s presence. I will never betray my little boy again!… 

It made me think about the meaning of my name. Little Ana. When did I shut her down? And how I could reach her. Don’t worry, I’m not going to start wearing a clown suit. But I did find that I had my own set of fat pants at home. And I’ve been practising barking whilst in them. 



The following day, Siegfried took the ‘Death and Dying’ session…We talked about our fears, practicalities, our wants and wishes, an ‘end-of-life’ checklist. Siegfried shared several stories. One stuck with me.  

Dying can take some time. Apparently your senses slowly go one by one. Your hearing is the last. He was invited to be at the bedside of a dying man. Friends and family had been gathered for several days waiting for him to pass. Unsure what to do they turned to Siegfried. He suggested they tell stories about their experiences with the dying man. It sounded very carthatic for all of them. But even more so for the dying man, who had tears streaming down his face. He could hear every word although the rest of his senses had gone. Beautiful. It had me in tears then, and has me in tears now. 

Wow! What extremes!!! Laughter one minute. Tears the next. But this is life. Happy to be a part of it. 

Cycle 4 Day 1: Scanxiety, Treatment and Another 10 Day Retreat

I had treatment again today. My first scan showed that for the most part this new chemo is doing its job.

Relief!

I’d love to say I was relaxed in the lead up to hearing the results, but my scanxiety got the better of me…. Actually I wasn’t too bad, but mentally i still can get caught up in analysing my potentially worsening symptoms, my mood drops and my outlook shifts. I understand why people choose to have ‘no more scans’ .

So I will have another 3 cycles. My onc is determined to get me into remission. As am I.

One thing that did help in the wait for scan results was booking another ten day retreat. This retreat is however a little different to Vipassana. First major difference is that I will be able to speak and make eye contact with others in the course. I am allowed to keep my phone, my laptop, and iPad. I have a pen, paper and reading material. I’ll even get 3 meals a day and there will be no 4am wake up calls! This is bliss! I am at the Gawler Foundation ‘Life and Living’ retreat. It’s a wellness course designed to tap into your mind-body connection for people and their carers living with cancer.

The Foundation was set up by Ian Gawler, a cancer survivor of some 30+ years. He studied veterinarian science and had a belief that the body (and it’s immune system) could heal itself given the right conditions. He has written a few books and i have read most. He taught me to meditate in one, and how to heal yourself in another. His introduction to ‘You Can Conquer Cancer’ explained that the book was not about ‘dying gracefully’, instead about taking control and really living. When I read this I cried out loud and pumped my fist in the air. “Yes!!” I thought. Here was a man that I wanted to listen to and believe in.

So I can’t quite believe I am here. I am excited, not nervous.

My hope is to come away from this ten days with renewed focus. I want to refine my healing practises. I want my own belief in the human body as a miraculous organism to be reiterated over and over. I want reassurance that the path I have been following for the past year is right for me. I want my hope to be galvanised. I want to be inspired. I want to feel whole and happy at its conclusion.

Too much to ask? Expectations too high?? Well I am sure a massage or two will help sway my final thoughts.

Cycle 3 Day 14: If You Are The One

I don’t watch a lot of television any more. I don’t like it filling my head space with junk.

But there is one show that I could watch back to back. Over and over…….. ‘

Now don’t laugh, but it’s the Chinese dating show If You Are The One.

On a work trip to Shanghai a few years back I asked my colleague if TV shows like ‘Idol’ were made in China? “Yes. The Voice China is our second most popular show” What was the most popular I asked? “If You Are The One”.

I vaguely remembered seeing it on Australian television, maybe late at night while channel surfing. I knew the premise of the show but I’d never taken the time to stop and watch it. 24 single girls, 1 eligible bachelor, all looking for true love.

I know what your thinking….. crazy cancer girl sitting on the couch in her PJ’s watching some game-show with sub-titles. Hoping that each contestant finds the woman of his dreams, and that they go on to live happily ever after (obviously after their Aegean cruise and she’s worn in her new pair of fashion shoes). Arh, fairytale endings…

But that’s not it!! It’s not just cheesy entertainment to me. I relate to it at a deeper level (again I hear you laugh – I’m a marketer’s dream, right?).

What I like is the contestants varied take on love, their requirements for a relationship and their consideration to cultural traditions. I guess what I admire the most is the (brutally) honest and open discussion about love.

Love is not a topic I am all that comfortable with. It’s not something I used to think about. Nor was discussing it ever top of my agenda, but my interest in love and it’s healing potential has grown since my diagnosis so it’s little wonder why I am hooked on this show. 

"All you need is Love"

All you need is Love?

Over the past year I have thought more deeply about the notion of love, the feeling of giving and receiving love, I’ve explored loving myself without judgement and struggled to understand unconditional love. I remember experiencing an overwhelming amount of love and support after being diagnosed. I smiled a lot in those first few months. I still do. To know how loved you are can lift your heart, clear your mind and make your body feel whole. So I started to asked myself (and others) questions about love in my quest to better understand this emotion. How can I ever know unconditional love if I’ve never have a child?! What does it feel like? Have I experienced it? Is this it? Why do I feel a wall around my heart sometimes? Is this why I can’t connect with ppl? Why do we hurt the ones we love the most? Why does my heart feel empty one moment and full the next? What’s the physiology behind this feeling? Can love heal?

I have not become an expert on love nor have I discovered anything that hasn’t already been written or discussed for centuries, so I will only say that I believe love is beautifully simple in its nature. However, it is something that I (and most humans) like to complicate, confuse and dress up with other issues or emotions. Stripped back it can be so easy. So pure, so healing.

Maybe that’s idealistic of me…… Maybe it’s the chemo talking…….. Maybe I will just keep watching If You Are The One, until someone confirms my belief and answers all of my questions…..

Cycle 3 Day 8: Am I a Veteran?

I was called a ‘veteran’ at chemo today. And I was not sure how I felt about being given the title.

There was a first-timer in the clinic. She could have been my grandmother. She was apprehensive and was checking out the facilities first before going ahead with her treatment. The nurse pointed towards me. I was half connected to the machine, my port had been accessed but I was waiting for blood results to return before starting the infusion.

“Here’s one of our veterans”

I smiled and reassuringly told her “it’s a walk in the park”. I needed to hear those words for myself. I had felt nervous about this visit for some reason. Maybe it was that I had dreamed about a man in a lab coat telling me that ‘things’ in my body were missing and that I would only be recieving 5 treatments. Today would be my sixth treatment (in my third cycle). So I too was apprehensive about treatment and was trying to shake myself out of it.
Or maybe it was that my presentation at work was complete and it had really focused and pushed me through the aftermath of the last chemo round, so much so that my downward slide was minimal – almost non existent. Was I concerned about this week and how I’d cope with side effects? Ergh! Chemo brain! Focus! Stay on track and get back to your topic!!

Right…. Veteran….. So I was in two minds about being labelled a veteran. Firstly, I usually associate the word with war and I am always careful not to describe my situation as a battle I am fighting. I don’t like to see it as a war. It would be different if it was due to a parasite or viral infection or some foreign object. But these are my cells. Not an invader or the enemy. Don’t get me wrong, I certainly don’t love these cells. But I don’t hate them either. I do want the mutant gene that was switched on to to allow this un-checked growth to switch off. And I do want my immune cells to spot these cells, attach to them and get rid of them. I’m reminded of my Jabba the Hutt imagery…..again I digress. Focus Anoula.

Secondly, the notion of veteran conjures up images of retired military generals sitting in their homes smoking cigars in darkened rooms. To me it equals old. I like to think of myself as a young cancer patient. I wasn’t comfortable with that tag. But why? My grandfather was a war veteran and he certainly didn’t fit the Hollywood image I just described. We were all so proud of his service record. I should feel honoured to be given this title.

I googled the word veteran. Of course, I knew meaning of the word, but wanted to dig a little deeper. To see if I could put my finger on why I was feeling the way I did.

A person who has had long experience in a particular field

There was no reference to war or the elderly. My first reaction to the word had been quite narrow. Reading the meaning had altered my view, opened it up.

Maybe subconsciously I had been hesitant towards such a title because I lacked the self confidence or felt I did not have enough credibility to believe that I could be considered a veteran in that broader sense of the word. I still see myself as fairly early-on in my career and therefore my scientific knowledge. I had a year of treatment, not years. How could I be a veteran???

Alex had seen it straight away. He’d seen me question my self worth. He felt I was a veteran given all I had been through and how I have coped with it. He knows I have had real-life experience and my opinion counts. He knows my career background and seen how I progressed. He’s also seen how I have flipped my thinking on its head. And he told me. He is always there to remind me to think more broadly. To continue to ‘think differently’. (It was the theme of the meeting I was presenting at last week).

We started discussing how great thinkers or revolutionaries like Stephen Hawking, Albert Einstein, Leonardo Da Vinci or Galileo had to think differently to to create their theories, inventions, or change the status quo. But they also needed to use all of their knowledge in order to take that great leap in thinking. They had to think outside the box but needed to truly understand what was in the box before thinking beyond it’s four walls. I was reminded I can use what I know (and have experienced first hand) in taking my own leap in thinking. I don’t need to discard it because I am scared of the stats, facts, figures.

I realise I am no revolutionary but to become the exceptional outlier (as Michelle likes to call me) I do need to think outside the box, but in the same breath remember not to throw it away.

So am I a veteran? Yes, I guess I am. Alex tells me to own it. So here I am, being brave, saying ‘out loud’ I am a veteran.

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Good on you chemo brain for getting all that out and coming to that conclusion :). Good pep talk. I enjoyed it.

Cycle 3 Day 2: From Blogger to Speaker

I’ve been a bit quiet of late. I have been busy at work.

I volunteered myself to give a ‘Patient’s Perspective’ talk to my colleagues and today was the day.

The plan had been to fly down to Melbourne and present in person, but as you can see by the Blog Title, I had chemo yesterday and my slide into the abyss can be somewhat unpredictable. Somedays it hits within 24 hours, sometimes 48. I didn’t want to be in a hotel room (or a meeting room) when it comes on. It’s not pleasant. Also getting on a plane is not ideal given the subsquent drop in my white cells shortly after chemo – not that I normally worry about that sort of stuff but confined spaces and other peoples germs being recycled in the air, the docs thought it was not the greatest idea. So I presented virtually. It wasn’t my first choice as I didn’t want to just be a voice on a phone, so I made sure it was a video call. I felt a like a news reporter because I wore track suit pants and Ugg boots underneath my pretty dress….I know, i know, I am ruining the illusion for those who were at the talk. Even more so with the picture I am adding to the post.

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I wanted to be prepared, because I was sharing everything. I wrote it all out, because at times I could lose it and start to cry. But yesterday after chemo I read the speech to Alex and he stopped me part way through and said it seemed a little robotic. I understood what he meant. The words were mine, but I was saying them with no emotion. I think it was the chemo. It does tend to numb me and make me a bit flat. But I didn’t want to fake the emotion, I wanted it to be real. What to do???

I talked to Leah late in the day and she suggested I listen to my ‘favourite’ Katy Perry song. Funnily enough, Vas had told me to watch her performance at the Super Bowl which was on earlier in the day. So that’s what I did. I was empowered, back to my normal self. Ready to roar!

It was liberating sharing my story. Different to writing it on a computer screen. I really enjoyed it and the lead up to giving it. I normally worry my socks off giving a presentation. And yes I was nervous, but it was a different kind of nervous. One that I could see move up and down my body, one that I wasn’t afraid of. It was one that I accepted and relished in.  

Here is a snippet of my speech:

Going into the clinical trial I realized how removed or detached I had become from the end product in my role as a Study Manager. We are like smiling circus performers becoming adept at juggling multiple tasks at once all while managing the expectations of Internal and External Stakeholders. Day to day, we deal with getting drug from A to B or samples from X to Y, we deal with hospital politics, Doctors ego’s, we pick up on incomplete or inaccurate documents, resolve logistical nightmares, and manage sometimes absurd ethics committees requests. And I am going to be very honest now, but I forgot at the end all of this is an actual patient receiving our drug, each with their own story, their own hopes and expectations. Someone that hopefully believes in your product as much as you do. I had forgotten all of this, caught up in database locks, meeting study milestones and conducting TMF reviews. So at each visit, I was reminded that every vital sign, every blood marker, every con med I took, every AE I experienced was going to be recorded in the database and make up part of the CSR. I wasn’t just patient 300-014. I was an individual who was receiving this drug, hoping it would help with my disease. Who was participating in this trial. Contributing to the knowledge of my disease and boy it felt good! And although the treatment did not work for me, I have no regrets to participating. And would I do it again? Absolutely, In a heart beat! No doubt in my mind! It might sound strange, but it was an incredible experience.