Guest Writer – Alex.

Happy Birthday Nouls,

Your birthdays were always extra special. I enjoyed them immensely.  This is true for so many of us.

I know your having a great day with mosses, I’m waving to you and blowing a kiss.

To continue with tradition, some of your much-loved team and I are having lunch at one of your favourite places; I know your presence will be felt.

I feel you here all the time and I get your signs, thank you for everything, you will always be my amazing. xxx

For those I haven’t seen or spoken to lately, the aftermath is going ok. The tidal wave of support is humbling. All the special people I have and the endless opportunities in front of me make me feel fortunate. Anoula really seems to be pulling some strings up there, which has been making every day special.

Please make contact with me if you would like to get together to reminisce, perhaps make some new memories and celebrate life. For those who have sent through their condolences by whichever means, I’m especially appreciative and will be in contact as time permits. I will be travelling for a few months, so please contact me (arborsaw@gmail.com, facebook or instagram – I know social media…….) to see what/when/where will suit.

Hold on to your memories of Anoula and be sure to have your stories ready to share when I see you face to face.

Sincerely,

Alex

Guest writer- Alex Time for farewell 

Hi Family, Friends and followers

Anoula passed peacefully on Tuesday morning.

Words are not adequate to describe our loss at this time. Other people close to Anoula will be posting reflections  in the coming weeks.

All are welcome to join the family and I for the celebration of Anoula’s life at the Palm Chapel of Macquarie Park Crematorium on Wednesday the 7th of October at 10.15am.

The wake will be held at Avalon Beach Surf Club from midday. 

In Leu of flowers, please consider a donation to the lung cancer research centre, Bill Walsh Lab, http://www.bwcancerresearchlab.org.au/donations

Thank you for all your support.

Alex

Guest Writer – Alex What an amazing journey

Hi Family, Friends and followers.
This morning I’m lying next to my amazing wife after a few tough weeks in hospital. She is resting and pain free. Anoula’s disease has recently taken a huge toll on her health and energy, but it has not had the slightest impact on her courageous attitude.
I am laying here with mixed emotions of sadness, ease and content. I am extremely proud of Her. Anoula’s travelled on a journey of self healing all while helping and inspiring others but never complaining. We always said she could write her own story and what she has chosen to include in this story is a reflection of the real Anoula. Traveling on the bus with her has been truly inspirational with life moments that most will never experience. It has brought the best out of both of us and made the A team even more.
The tidal waves of support from all of you makes us both feel incredibly fortunate and I appreciate Feeling fortunate in this type of situation would not be a common emotion.
Last night we met with Anoula’s world leading oncologist. To simplify and avoid the medical jargon, Anoula’s story is in it’s final chapter. We are able to make her comfortable during this time. This, including the fact that all of Anoula’s wishes have been acted upon and all the medical avenues have been explored, makes me feel comfortable as well.
I ask that everyone takes a moment today to send Anoula some thoughts, well wishes, prayers, positive energy or what ever you have in your arsenal to boost and her give her complete confidence for her new beginning.
I thank you all for following Anoula’s incredible journey and apologise if this post isn’t up to the usual standard. The guru can’t type or advise me in the functionality at this time.
Best
Alex
image

Pre radiotherapy treatment 

What a brutal week. Funerals, family, Hannibal Lecter (sorry, Spider-man) mask fittings, removal of my 30 stitches, pain management plans, breakthrough pain med conversations, 5 meals a day, visitors, new car test drives, kitchen fitouts and much more meditation. Me = Dazed and Confused.

  
I always knew the surgery aftermath would be harder than the surgery itself. But what a readjustment! 

Each day throughout the week, Alex tried to convince me to go back to hospital. Each day I would resist, find a new excuse. My surgery has gone very well and I am in no pain from my scars, but my other pain began to spiral out of control. Life got busy quickly, I was not ready for it. I withdrew. I also have a different focus now and so my tolerance is lower. Much, much lower. 

It has felt chaotic, like people around me are running around with their heads cut off, not really know what to do or how to behave. And how could you blame them after the last crazy couple of weeks!! There is so much adrenaline still coarsing through the air but I need for it now to abate. I need to start channelling it into my parasympathetic nervous system. 

I have been surprised at the variability in my body from one day to the next. (Maybe, that’s a lie…. I think that I have been up and down from the beginning and maybe it’s just a bigger spike now…) I attempted to walk the length of my beach this week. It was exhuritating. I was distressed. Alex was distressed as I gripped his hand, coughing and spluttering every step of the way. I was determined. And I made it. Weak one day, strong enough to paddle board (in dress up) the next. 

  

There is so much still unknown in terms of my next treatments and my recovery. They are not going to treat me like a normal patient (surprise, surprise). They will try something ‘novel’. So much is still up in the air. And this hasn’t helped those around me. I’ve also not had any systemic therapy for sometime now. I am working on changing that as soon as possible! I think I need it. 

The most wonderful part of my week is that Alex is back in my realm. He has taken one huge leap, one I wasn’t sure he would make. If I had a choice I know I would think twice! But he made it with flying colours. x

Characters in My Life: Uncle Pete

I have two favourite uncles. Neither are blood related. Neither are your usual run of your mill type individuals. Both were English teachers. Both are eccentric.

I am in my 30’s and I could never bring myself to calling either one by their first name alone. Uncle Peter or ‘Uncle Pete’ as he is affectionately known, was the MC at my wedding. I am not sure why but I am always reminded of images of Sir Peter Ustinov playing Hercule Poirot somewhere in Egypt, on the Nile, when I think of him….. He is one-of-a-kind, animated, intelligent, with a deep, deep love of Sparkling Shiraz. 

He has pulled me aside 3 times, since I got sick, to share his life advice with me. I cry each time.

I have spent every Christmas Eve at their house since I was born. It’s a German/Russian/Ukrainian thing. Vas and I grew up with his 3 sons (I was born on the same day as one and my brother was three days part from one other). Like with most of my parents friends, I was the only girl in their circle of children. But I don’t think this was ever really a factor in our life or upbringing. 

The Christmas I got sick, Uncle Pete was scheduled to have a double knee replacement. As the night went on I began to tire quickly. That Christmas I was supposed to be pregnant. Instead I had just been released from hospital, was newly ‘child-less’ and had squeezed in my very first round of chemo. I had a new haircut, a new diet and what I thought was a new outlook.  

He walked me to the car as I was leaving the house and said to me ‘You are like my own daughter and so I am giving all my strength to you’. I felt like there I was a volcano about to erupt in my chest. He needed this strength. Not me. How could I accept? This wall of emotion rose inside of me and I didn’t know what to do with it. I think I tried to graciously accept his offer (not something I have ever been good at!) but was so overcome I began to sob. I could no longer keep it together. And it is a theme that continues whenever he steals a quiet conversation with me. 

The second piece of advice he shared with me was at my Mum and Dad’s house. He said that all you ever need is love. Nothing more, nothing less. That is it. I did feel like I was at a John and Yoko sit-in for a second, as his comment caught me by surprise but his words have remained with me as I desperately try to embody this life philosophy. Love is the only thing we come into this world with and hopefully it is the only thing we leave with. If I could feel it every day, especially at the moment. Things would be easy. Well, easier….

And finally yesterday, while we sat together briefly at my grandmother’s funeral, I found out he has written three poems for me. One of which is only three lines long. He recited it to me. O oh, here comes the volcano. It’s starting to move in my chest again. I felt like I might burst.

You see, I jokingly blame Uncle Pete for introducing William Blake to my Dad. I know the importance of the English language to him. So for someone, anyone to write a poem for me. Let alone three. Is a great honour. 

He told me that it was a culmination of his 64 years of work.  

Three. Simple. Beautiful. Heart-breaking lines. 

I imagined him creating them. I thought about why he had written them. Just for me. This beautiful gesture has touched my soul so deeply, that I can’t put it into words.  

So i took a selfie at a funeral, mainly to stop me from crying when i heard my poem but also i had clean hair for the first time in two weeks and i actually felt good. I wonder how wrong that is… i just had brain surgery x2 so i dont really care. and for all those who asked, no it was not a wig. its my own hair.

Radiotherapy Day 2: Down The Rabbit Hole

**slightly morbid post alert**

Today I crashed and burned. I woke having never felt closer to death. Every tumour in my body felt heavy and active. The ones in my chest, my arm and my head. I told Alex I felt like I had gone down the rabbit hole and no one had followed. And that was okay. I felt safe. I was alone, but not lonely. I was exploring and didn’t want to be disturbed. But I was teary because I felt as though I was a circle being pushed into a square. It didn’t feel right. I have come back to this world and it’s too fast, too hard, too cold, too clinical. I am not sure where I fit anymore. I want warmth, gentleness, kindness and love. I want soft edges, blurry lines, luxuries. I want a support I can’t describe. I want to put on weight. I want health. I want no pain. I want peace. I am desperately trying to re-establish a life but running on empty.

Alex can’t wait to get out of the house. If he stands still, he might have to breathe it in and I feel it is all too terrible. I am not sure he understands me or where my head is at. Our communication feels strained, forced. Looking in I wouldn’t get me either. I don’t give too much away. Conversations take up precious energy and I don’t like answering the same old questions. Did you get any sleep? How do you feel? What do you need? What can I get you? Do you want visitors? I don’t want my house filled with people. I don’t want to speak. I am extremely comfortable with myself. Maybe too so.

On Friday I had my first hit of radiotherapy in my shoulder. I imagined it was like having your teeth cleaned at the dentist. There was water and plaque flying everywhere only it was happening inside my shoulder. It was buzzing afterwoods. It felt good. Generally it flares a little and you get relief with 48 hrs. I am reaching that time point, but the relief seems to be nowhere in sight. I think everyone assumed, this would just fix it. Me included, but I still need help to dress, shower, cook, clean, chop, carry, everything. I have had to learn to clean my teeth with my left hand and flush the toilet. I need clothes that are easy to get on and off. The stretchier the better.

So today has not been the greatest day. But I think I sniffed death and I didn’t like the smell. I think what you do whilst in the despair, in your black hole, defines you. I made myself a well balanced cooked lunch. And baked my Dad a cake (it’s his birthday) and poured lots of love into it with my one good arm. I also meditated a lot (in my favourite spot) on my balcony. It is a blue sky day, not a cloud in the sight and the birds are out in force. Everything appears very bright. I think I just clambered out of the rabbit hole all by myself with a little more insight than I had at the beginning of the day. With a new sense of certainty that anything is possible. Full stop.