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

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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
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Radiotherapy Treatment #5: August

August is my least favourite month of the year. 

It shouldn’t be. 

It’s the month both my parents celebrate their birthday’s. The month Alex’s dad was born and also the month his wise and beautiful Buba came into this world. 

But more recently it became the month I lost both my maternal grandparents and being from the Southern Hemisphere, it is the last month of winter. A season I am not that fond of now that I seriously lack my own winter coat. 

Winter coat aside, the main reason I am not a fan of August, is because of a dream (or maybe it was a nightmare) I had about 5 years ago. In 2010 we were living in our tiny, mouldy one bedroom basement flat in Maida Vale. For us it was just perfect. The location was central and the neighbourhood was great, friends and pubs nearby. But one morning in early January that year I woke in a lather of sweat only to recall a dream I had from the hours before. I was Angelina Jolie (she has been a dream theme that has continued during my disease in many different forms). 

The dream was very clear and simple. I had a similar tattoo to the one that she has on her arm listing out the dates, longitude and longtitude points for each of the places that her children were born. Mine was slightly different. I had only one date that I remembered. The others had been scribbled out. It was my date of death. 13 August 2013. 

I kept this to myself for a few years only telling a few people mainly because I thought I was crazy and I didn’t want to think about it. But as the date approached the more and more apprehensive I became about it and for my family. I changed dates of flights, appointments and importantly (in my eyes) the date of my minor surgery I was scheduled to have ‘clean my tubes’ out. After three years of no success, I bit the bullet decided I would see an actual gynaecologist about my inability to fall pregnant. The GPs up til now had said we only have half the picture with what’s going on with Alex, so it was time to have my side investigated. I would need to have a more invasive test. For me I feel like this is when my clinical trial experiment all started…. All scheduled on the date of my death???? Well I fixed/controlled that and changed the date quick smart! The OCD me!! I changed the date, making sure it was the day before allowing the 13th to be a recovery day, which suited me fine. I would be safely wrapped in bed not able to go anywhere….It was a definately a forced change in my trajectory as Zoe would say. And, in my mind I haven’t worked out if I was not meant to (or ready) to go down that motherhood path (which began within 3weeks of the surgery) which set me travelling down this harsher more savage road that has irreversibly changed mine and those around me paths forever. I not sure it matters, just that I left it and a new road opened and I took it. Open and willing. Trying to do so with open arms and a newly found heart and soul. I still feel lucky…

So August isn’t my favourite, but I know just a tick away Spring is due and I get to remember the most magicial week of my life. I know this is not living mindfully and it a cycle I will eventully break. My today is all about making new wonderful memories in the moment. My brother is home from o/s and I missed him dearly, we are ‘housesittying’ in another beachside suburb which is new and exciting, and it is Alex and mines 5th year wedding anniversary. And although each year is different and more complex than the next I wouldn’t change what we have created for anything. Our path is hard, but we don’t do normal. That’s not the reason why we are together. That’s not the couple we are. I wouldn’t have it any other way. 

  
Love you poopie xx

Radiotherapy Treatment #2: A New Visualisation 

I get to wear my mask for the first time today as they zap my brain! I’m kinda excited….what a sicko. My Dad is coming with me. I think he might be excited too. 

I read a book when I was first diagnosed. It’s the thought that counts. By David Hamilton. It among a number of books and people, helped set my path and allow positivity into my life. 

I had started reading his second book. How your mind can heal your body. But I couldn’t get into it. Hamilton makes it clear from the get go that this is just his theory, he could be wrong and that there isn’t that much science behind it. I needed more at the time and so put it away. Since the surgery it has become a bit of a night-time read for me followed by an episode or two of Veep. 

Last night I saw a new visualisation. I don’t think Jabba the Hutt is going to cut it with these new lesions and I’ve been ‘seeing’ this for a while in my meditations, contemplations and general daydreams….but last night I heard music, I saw myself ‘in it’, and it felt more real. I hadn’t taken my full gamut of pain meds so I don’t think I was hallucinating either. 

*Cue Nina Simone Music*

  It’s a new dawn. 

  It’s a new day. 

  It’s a neeew life for me. 

And no, I am not taking inspiration from The Bacherlorette ad, although I sometimes wished I blogged about that show instead of my actual life…but I am strutting along some city street. There could be some slow motion action too. 

So I am dressed as a tarted-up scientist. Tight white lab coat, slick back hair, dark rimmed frames, Nana Merle’s diamond earrings, shiny lips, air-brushed skin, fabulous black heels. We have a photo in our study that is quite close to what I look like (minus the lab coat and frames). The photo was taken in a photo booth in Marylebone Station one cold winter morning as I needed it for a monthly rail pass I just bought. I took the remaining photos home to show Alex, cause I didn’t think it looked like me. He asked who it was, ’cause it certainly wasn’t the woman who left the house each morning’ and he wasn’t convinced it was the woman he had recently married. The photo travelled home with us because we always wonder who she was….I guess now we know. 

  
So I’m confidently strutting the streets in my fabulous get-up to get into my body (the lab)….. which is where all the glamour ends, reality begins and my actual visualisation starts.

When I was a bench scientist, my main role was to grow bucket loads of decidual endothetial cells in petri dishes. These cells line the many blood vessels that are found in the juncture between the uterus and the placenta during pregnancy (have I lost you…too much information??). 

The main problem growing these cells was that the petri dish could become contaminated with another cell type called fibroblasts. They are a type of connective tissue and they quickly became my arch nemesis. Overnight, the fibroblast could multiple and cover the whole dish leaving only a few endothelial cells left to replicate, rendering the sample useless for future experiments. 

One way to manage the growth of the fibroblasts was to lug a whole microscope into a laminar flow hood and then carefully suck out the dodgy cells with a long glass pippette. (OK, definately lost the non-scientists! Maybe the photo will help) 

 It meant that the right cells, the endothelial cells, had a chance to grow and fill the dish, ready to harvest and freeze for future experiments. 

So that’s what I’ve started imagining in my body. A glass suction pippette sucking out the various areas of ‘contamination’. 

So I’M FEELING GOOD!!!!

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