Finale

PAYING HOMAGE

Those wanting to find my grave - there is none.  Nor a funeral.  Nor will I be buried.  I am not my body, it is my vehicle through which the collective nature of 'me' (some might call 'sense', 'essence', 'spirit') connected with the world and that lives on in anyone or anything shaped, moved or changed by it as I become part of their 'tapestry'' but as so many were part of mine in my lived life.  

Chris will have a small private memorial which is for those closest to Chris and I in our last 17 years who will go on to support Chris in his new life.  You can, however, plant a plant in my memory, create a small personal space or personal altar, or create a 'fairy garden' where you can visit with and commune with me in your heart where this 'sense' of me will live on for anyone who needs that (plus it can also be a way of becoming more connected with a reflective, meditative part of your 'self').  My ashes will be scattered in various places in nature.  If you cannot visit any of these directly then if you wish to you may find me in the night sky for we are all made of star stuff or in nature which I have connected to all my life.

 

PRIMARY CANCER

I found my primary breast cancer doing a self check around June 2011.  I already had two cysts I knew of and thought this third lump was 'just another cyst'.  It was  moveable, unlike the stereotype of breast tumors, so I waited around 6 weeks.  But the lump kept growing from the size of a peanut to the size of an almond.  Finally I asked Chris 'is this in my head?'.  He told me it wasn't and wanted me at the GP that Monday.  Within a week I was having a mammogram, the next week a biopsy and the next week diagnosed with breast cancer and scheduled for surgery.  The nature of my cancer meant it had a very high return rate, so I rejected lumpectomy and went for a double mastectomy and no reconstruction with nothing there to radiate.  I was 47 and would be breastfree.  After my surgeries I got the bad news that my lump was over 3cm and would therefore have a change of having released cells into my blood and lymph.  I would have to do chemo.  I did heavy chemo for 3 months and emerged from it on Tomoxifen.  I stayed cancer free for 4 years and 10 months and thought I had a fair chance of being in the 70% of women with breast cancer who will never develop advanced cancer.

ADVANCED CANCER

The journey of Chris and I since my diagnosis with metastatic breast cancer in September 2016 was captured in December 2016 in the feature length documentary, Nobody Nowhere, which I hope the world gets to see one day when its funded and in production.  Our journey was also captured in posts on social media, in photos and video clips which you can see collected here below. 

JUNE 2016

I saw my oncologist for my second last check up since my primary breast cancer in 2011.  I had almost made it 5 years since my original cancer and its safety net of Tomoxifen as someone with ER+ breast cancer.  The check up went fine.  I had no indications of returned cancer and was in good health.  I had one more appointment, in December, and I could say woo-hoo, I made it 5 years without my cancer and could ditch the Tomoxifen.

AUGUST 2016

July slipped by without anything significant alerting me.  But August began with some strange and ominous changes.  I found my abdomen distended, particularly up by my ribcage on the right.  It was making it hard to breathe and so I assumed it was muscular and went to the Osteopath to get the area freed up to improve breathing.  She had never seen anything like this, it was tight and clearly locked up and limiting movement of the diaphragm on that side.  I asked her to write to my GP to put him in the picture, she did.

A week later I found it hard to eat and was down to baby food with food taking hours to move from the stomach.  I was struggling to drink because that was the same and I had to choose between food or drink so managed by drinking last thing at night when not eating.   Still, I assumed it was 'just gastroparesis'... and with Ehlers Danlos Syndrome and a history of autonomic dysfunction gastroparesis seemed quite a reasonable hypothesis.  There seemed no reason to trouble the oncologist, besides my next appointment with him was December and in June I'd been doing fine.  It never occurred to me that my cancer could have been back.

I went to the GP... he did no blood tests, didn't ask me if I'd recently had one or whether I'd told my oncologist about these new symptoms.  Instead he diagnosed it all as gastritis and gave me proton pump inhibitors to try for two weeks.

The proton pump inhibitors made me quickly very ill.  By the end of the two weeks breathing and speaking were by then also challenged because if I spoke too much the respiratory muscles tired out and I struggled to breathe. I would lay one side to breathe and speak, away from the liver, and the other way to eat and drink, away from the stomach.

I returned to the GP.  He cheerily asked how I was feeling now.  I told him I was much much worse.  He diagnosed gall stones and ordered an ultrasound for a week's time.  I asked if we could please do a blood test.  He said 'yeah sure, why not'.  The blood results would take a week.  

I went home and by now progressively found a strong 'rusty' taste of 'tomato soup' constantly in my mouth that put me off most food and my mouth was getting so dry it would wake me up to 6 times a night.  

The GP called me the day the blood results returned to come in urgently.  Something was severely wrong with my liver results.  The results were so extreme he presumed the pathology lab had got something wrong.  He ordered an immediate repeat blood test with urgent return results.  We were also sent to the hospital for an immediate ultrasound of the liver.  The query on the referral said 'gall bladder disease?', 'haemochromatosis?', 'breast cancer metastases to liver?'.  Reading this Chris and I held hope it was not the latter.

The ultrasound showed no problem with the gall bladder and a liver filled with innumerable tumors, up to 3cm.  Next came the CT scan, there was also a tumor in the spine at L5.  I had metastatic breast cancer.  By the end of the day all results were in.  The GP, upset and so sorry about the diagnosis said he'd presumed the oncologist was doing regular 6 monthly blood tests.  But all it would have taken were two questions all those weeks ago: 'have you told your oncologist about your new symptoms?' and 'when was your last blood test'. 

The GP said, "your's is not a curable situation'. With 9,999 of 10,000 metastatic cancer patients dying from their metastases this was reality.  But it didn't change the fact that the GP had dropped the ball.  We could have caught the liver tumors earlier, perhaps even when I'd have qualified for a resection that could have given me up to 3 years.  But with extensive, innumerable tumors throughout the liver, it would be around 2 months without chemo or up to 10 months with chemo. I ultimately changed GP. 

SEPT 8th 2016

Yesterday after blood tests, abdominal ultrasound and abdominal CT scan my diagnosis was extensive metastatic spread of cancer to liver and at least one metastases to spine at L5 (they'll do a full body scan to see if there's more). All likely breast cancer metastases.

I'm seeing the oncologist tomorrow for a plan. The liver is in big trouble... innumerable metastatic lesions (tumors), largest 3cm. I may be offered chemo. They may be able to hit this hard and knock it back into manageable state. But it will be a tough road and it may not be a long road. My immunity has always been low. I don't have that on my side. When I did chemo in 2011 my white cells went to 0.0 each round. If my white cells don't play ball I may have to sit on the sidelines.

And its all ok. As a breast cancer patient I knew it could come back. I was 2 months off my 5 year mark. I'm ok that this may be my last year. I will let you all know if there's a workable plan that will help me comfortably survive beyond that.

I know wholeheartedly that I live on in all who have truly known, loved and been inspired by me, and even in those who have had nothing but troubled feelings about me. I have lived the most lucky, full and blessed life.

As a Taoist I have made peace with and come to be grateful for all the bad and all the good that came of it. I have never failed, daily, to live, love, laugh with the blessing of the good that has come my way... especially my best pal and husband of 17 wedded years, Chris Samuel... and our cats Mini and Max who have allowed me daily to enjoy catdom for the last 4 years... and our friends, near and far, old and new, many of whom are cherished as family. I have been blessed to live in the nature of the Dandenong Ranges and its wildlife and to enjoy a dawn chorus this morning amidst trees as I watched the spectacle of the light show as the sun rose.

So honor me with waking for a dawn chorus, go out into a park or garden and listen to the dawn chorus of song birds, experience the light show, and I will be there. For you will always find me there, with you.

SEPT 9th 2016

Chris and I saw the oncologist (cancer doc) today. My cancer mutated and is no longer able to be blocked by hormone blockers. My cancer is now what is called 'triple negative'.  Will get a picc line put in first thing Monday and straight off for a chemo transfusion with Abraxane. I will then be on weekly chemo, 3 weeks on, one week off to see if they can shrink my liver.

The liver is so enlarged that if its not shrunk it will limit ability to eat, drink or breathe. So this is the priority. After week two they'll know if it is shrinking the liver. We might go after bone mets later. Its the liver that is at risk of killing me quickly so we're going for it. So for us this is great news... its a plan... it gives us hope that at the very least I'll have more time.

SEPT 10th 2016

Seems the C word sends everyone mad. Friends suddenly lose their equilibrium, they can run about like mad chickens, look ready to throw you a pity-party, find a mission in healing you, become a resource machine, tell you one size fits all happy ever after stories of some archetypal ‘Mary Smith’ who had cancer, tell you how ignorant your oncologist or surgeon is and how they have found one who is much better, or how your cancer could really be a banana or sweat gland or anything other than what your doctor says it is, or they disappear altogether unable to face you. In short, your friends may suddenly turn into ‘idiots’.

Perhaps they should really say any of the following:

shit, that’s scaring me
shit, I feel out of control
shit, I feel helpless
shit, I feel petty and pissed off at myself worrying about my own life
shit, I love my friend and I’d hate to lose her
shit, I don’t know how to tell her that cancer scares me because I fear getting THAT one day
shit, I don’t know how to just be my usual self now that I look at her and see the C word
shit, I couldn’t possibly burden her with my feelings about all this
shit, could I really try to chat and be like ‘business as usual’? Wouldn’t she think I was utterly insensitive?

Perhaps you’d do well to go take Rescue Remedy, run yourself a bath, screw your mad chicken head back on and remember how your friendship usually is because that’s what actually sustains your friend and she may really need a sense of everyday life at present, of yours, of hers.

My quick do’s and dont’s.

Give the person time and space to digest news about their cancer in their own way on a variety of levels.

Don’t expect or need endless blow by blow updates. It’s their cancer, not yours.

Let the person know you’re there and that you’re open to hearing what kind of help/support they might want from you (if any).

Respect their feelings of autonomy, their need to empower themselves that this is THEIR journey they will do in their way.

Don’t undermine the person’s trust in their specialist medical team.

Don’t inundate the person with generic, alarmist nor minimalising forms of information.

Understand all cancers are different, there are also very different TYPES of breast cancers, then each will have its own stage, grade, treatment plan and wider genetic, immunological and environmental contexts, so if you don’t have all that information, hold off on the one size fits all advice/stories as these may no more apply to the person you’re telling than they’d immediately apply to you.

Don’t instantly assume the person is in pain, suffering, miserable, a victim nor that they hate their cancer. Every person has their own spiritual journey with their body, their immunity, their genetics and their cancer.

Don’t instantly promote yourself to being their savior, hero, priest, healer. They may miss the every day friend they then just lost.
Talk about your every day life, bring along show and tell (but don’t be an energy drain/venting machine). They’re not dead yet.

Their life will change, they may have quit work, be tired, be adapting their life to better manage their treatment and journey. Be open to hearing about this as their journey, their new daily life, and don’t be surprised if it is quite a spiritual adventure for them and not just a fear driven battle with darkness.

If they’re tired or ill or just need time and space to get through a procedure or ponder a treatment choice, don’t take that personally, you have your own life, just keep living it and check in later to see if they are up for more contact yet, or not.
Be human, be open, be yourself and don’t lose track of your own life. They liked you for who you were in your own right, in your own life, don’t put your life completely on hold by fixating on theirs.

Don’t fixate on their cancer either, nor behave as if they will be back once the cancer has gone. They are still the person they always were, that person didn’t suddenly evaporate because of diagnosis or treatment and the cancer is merely walking along side of them. If they are lucky, the cancer will leave them at some point, but if it doesn’t, don’t let cancer hold to ransom your friendship with them as a whole person.

SEPT 10th 2016

There were some people who were immediatiately 'on the same page' with us.  One of these was my life long pal, Scott Mc Leod.  As soon as he could Scotty arrived with a box full of coloured ping pong balls.  He and Chris got up on the top bunk in the little spare room and I laid on the run on the floor and they snowed colored ping pong balls onto me and it was hilarious.  We all laughed and laughed.  Then we each took turns with the ping pong snow and pretty much turned the little room into our own little make shift mini ball pit.  It reset us, bringing us back into the dagdom of our lives.  Together with Scott we cried but we also laughed and walked and talked sometimes and others just cooked or ate together.  Great medicine for the spirit.  

SEPT 11th 2016

Chris and I were in good spirits.  It was a hopeful day.  I was going to radiology to get picc line 8.45am then straight to chemo.... holding good thoughts they can shrink my liver... now.... EVERYONE... get up... sing along... lets get the world singing and dancing for me today.... come on....dance with Chris and I (yes, I'm steroided, comes with chemo)

 

 

SEPT 12th 2016

Animals get cancer, trees get their own version of cancer, metal rusts, a kind of 'cancer' that besets old Holden Utes... the 'trusty rusty', trusted to rust.  And so I accept that I too am a 'trusty rusty' and trusted to rust sooner than most.  Not negativity, but realism and with realism comes a groundedness,.... 'grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference' ( non religious form of the Serenity Prayer widely used in AA and a great mantra for life's biggest challenges).

There are five of us cousins on my mother's side who have done cancer now... Sandra (breast), Rebecca (lymph, bowel, melanoma), Steve (bowel), Leila (liver) and I was the oldest of them in this 'cancer family'... I wanted to set them the best possible example of the walk from metastases to leaving the body... a road map for them that could help them (and me) not fear, face things head on with realism, transition well and enjoy and not squander the last months one has.  The two generations before us was just as rampant with cancer and two generations before us it was the old days in terms of cancer treatment, and we'd all heard the gory details and suicide endings of at least three who took that option when the options today were not there.  I wanted to leave those in my generation a better path, including those who might yet also join the collection of us having survived or died from cancer.  We can't change out DNA but we can change our way of dealing with what it deals us.

I posted this for my cousin Sandy

for you and me Sandy... those two kids, aged 9 & 10 in the drive-in playground... you balling your eyes out about a beautiful lady dying of cancer and me comforting you... and we both got breast cancer but this metastases became my trip... I love that girl in that playground... the wild free nutters we became as teens and the fighters we became.

SEPT 12th 2016

For anyone, however grieving, sad, scared, shocked, overwhelmed, feeling helpless, desperate, well intentioned, who thinks they know better than my oncologist....

Please know there is nothing more energy sapping, self important, wrong or dangerous to say to someone with life threatening secondary breast cancer or their loved ones than to immediately insist, on the person's first chemo session, on playing 'hero moment' and advise that they need to stop chemo immediately because someone they knew claimed they cured their own cancer with cannabis oil or or or or...if they are not MY oncologist, dealing with MY cancer be respectful and hold your tongue... yes, this happened to me today when I phoned to tell an important life long friend how I had coped so well with today's first chemo. 

Against her adamant resistance I directed her to the counselor at the hospital to help her cope in a far more productive way.  She came to understand my situation, my choices and we moved forward in a far healthier manner.  People deal with grief in all kinds of ways.  It was, however, also really important that they know that in this extremely important last year of my life that 'their stuff' is not 'my stuff'.  But they too also need counseling and so grateful the hospital had a counselor there not just for me and Chris but if needed also for our closest friends.

SEPT 12th 2016

In chemo they gave me good drugs today at the hospital... I went home and ate half a pizza (due to dexamethasone they give to stop serious immune reaction)... had hunger first time in 6 weeks... and only solid food twice in 6 weeks (I was seriously losing weight dangerously quick) ... so super impressed... and still able to get fluids down, and not having extreme dull crampy pressure from the massive tumoured liver... this is a great day...

the chemo is unlikely it began to shrink the tumors throughout the liver yet but it has given me the best relief so far... the dexamethasone will wear off and I'll fatigue like crazy... but for now... I'm whooping it up the fact I can eat and actually feel hunger. Awesome...

My Sista for the past 6 years, Morghana, came over for one of our fortnightly tea parties... always grounding, always there when doing the tough stuff.  And amidst the comraderie and focus, we'd share the magic and surrealism of it all too.

SEPT 12th 2016

I'm slowed and exhausted now
dexamethasone (like speed) is wearing off
breathing is shallow
sleep imminent
night all

slow dance everyone.... come on, dance for me

SEPT 13th 2016

Eating, drinking, shitting, peeing, breathing, sleeping all working well... I even have some COLOR! no major autonomic dramas or emergencies - awesome - bone scan at 12.30...  chemoing my whole body to shrink this liver and its innumerable tumors will also shrink the tumors in my spine ... here comes the sing along everyone... dancing even better... especially daggy dancing

SEPT 17th 2016

To the Sistas who helped this once homeless girl, Toni Donia (when I was 8-10 years old) and Dee ('Robyn') Stephens, Anty Papa, Sue Windsor (you all watched out for from 13-15), and before these angels, Sonia Cappellazzo and her beautiful mother when I was only 6 mths to 3 and a half years old and of course my cousin, Sandra Sultana from age 9-14 for whom we stayed at each other's houses to strive to protect ourselves from the abusers in each of the houses that were meant to be 'home'. ...without which I would not be here at 52.  Together these Sistas loved me when I could neither love nor save myself. And in time I learned how to.  Dee and and Sue Windsor too, running the gauntlet, breaking their hearts, so I might just find my own....and I did....what a gift, then, and now.  Thank you all of you for the life I got to have, a life filled with fun, joy, love.

now another sing along and dance for ya

SEPT 17th 2016

Dee, you reclaimed me, reinforcing just through the dagdom and kindness of true Sistership, that I was nobodys  owned or smashable doll... you came into the jaws of hell with me... you'd come back to the house I was escaping and gave me our secret sign language as I endured abuse in front of you, and I knew, because of you, that I'd survive whatever happened there...

then we'd escape back to your place and be 'real girls'. The song you sang to the homeless friend you protected many many times at your own serious risk when I could not and then would not protect myself.

I cannot thank you more for the last 40 years I wouldn't have had without you.... the rapists you saved me from being dragged into the car by who ran over my foot, the date rape you fought off for me and pulled me running when this drunken teen could only stagger... the many many abuses you watched with courage when you could do nothing, the ways you fought so hard to keep me safe at the flat with you and your mum when I struggled with any kindness, the times you saved me from my night terrors and sleep walking and gave me sanctuary so I could get the education that lead to my professional life....

I don't know that people know what a hero you were...

SEPT 17th 2016

To my pal of over 30 years, my non-biological brother Scotty.... drum roll... today....I ate fruit salad with sheep yoghurt.... a whole bowl... a sausage.... the inside of half a sausage role.... a mini party vegie pasty (GF/CF/soy free :-), a piece of toast... and will try to eat now with Chris... song for ya

SEPT 18th 2016

I'm Dorothy.... I've got the red sequined slippers to prove it.... Oz is the oncologist, but with stronger magic than in this version... so bloodwork tomorrow... wish me great white cells everyone

SEPT 19th 2016

OK, satire warning.....

you'll be pleased to know that in just one week I could have been cured by a trip to Cuba, a liver transplant, an alkaline diet, Miso soup, and cannabis oil (desperate, grieving people sometimes lovingly take this route).

dang!

unfortunately I'm so hopelessly indoctrinated by big pharma (my oncologist charges 1/3rd of a usual shrink! and all in oncology are the most heartful nurses, docs, radiologist I've met ) that I'm hopelessly blind to the amazing promise of as yet medically unproven cures

but knowing that 9,999 of 10,000 people with metastatic cancer will die from their metastatic cancer I'm not wasting my precious time on fairy dust

just in case though I have some Ruby Slippers....and getting 5000 people world wide to sing and dance to daggy songs

I guess the fact I gained 1kg since my first chemo with a liver full of tumors, am now eating 3/4s of my usual diet (with stacked cals) and feeling 25-50% better than when I went into chemo must all be in my deluded little head... but boy I'm likin' it that way.... and no mouth ulcers, no cold sores and kicked but on thrush to have a healthy red tongue in time for bloodwork today.

so to all who think they know so much more than my oncologist about my cancer, when you're in my shoes, feel free to be that 1 in 10,000 who goes NED (no evidence of disease) and stays there... and I'll wish you well, but I'm going with the chance of more than 4-6mths survival that my particular chemo for my particular cancer at my particular stage under the expertise of my particular medical team is offering. The proof of the pudding is in the tasting and chemo is agreeing with me in spite of the challenges. 

 

 

SEPT 19th 2016

ok daggy disco divas... up and dance.... because tomorrow I'm in chemo number 2 in order to be WORKING MY WAY BACK TO YOU all ... everyone said I looked great today compared to when I came in before first chemo, ashen... I am actually sparkling and have some color... so now dance

SEPT 19th 2016

Muscle pain, colitis pain, pressure pain from an elephants liver.... but amazing what a wonderful Panadol can do 1-2 times a day... I have a HUGE pain tolerance, always did. I tell them I'm a warrior, not a princess... but I'm working on keeping as much as possible stable.... so when I know its time to scream for meds... oh I will :-) I also found how to sleep.... on my back, legs over a big chunky pillow to give diaphragm and liver a break

 

 

SEPT 19th 2016

Dedicated to the gutsy beautiful swan I paired with for life.... humble, gorgeous, 17 awesome years of treasured life with Chris

SEPT 20th 2016

For all whose open warm hearts are their guiding light and the generosity with which they have been supporting me and Chris today on my 2nd chemo

SEPT 20th 2016

OK... the good news....

a) my seriously enlarged liver HAS already slightly shrunk since my first chemo last week and what shrinks it is that the innumerable tumours have shrunk a bit... this means new ones may have been killed, tiny one's knocked back, small, medium and large reduced at least a bit.... they didn't expect this until after second chemo.... so great result and probably why I can now eat solid food again.

b) my white cell count was good.... and I was able to do chemo number 2 today

OK... now the bad news....

c) white cells are made up of several types... one is Neutrophils... I am Neutropenic... this is a kind of anaemia... anaemia of Neutrophils... I always was... seriously until age 40 then mildly ever since.... and to do a chemo one must have at least 1.0 of Neutrophils.... or the chemo could leave you to be killed by your own natural bacteria.... today my Neutrophils were 0.7. This meant that the oncologist made the choice to give me a half dose of chemo today not the full dose... this will certainly help me better than no chemo today.

d) neutrophils take time to recover to at least 1.0.... I'm meant to have chemo 3 weeks on, one week off.... because I'm clearly Neutropenic my body may not handle that.... the oncologist thinks in my case we will have to do 2 weeks on, one week off.... this is better than nothing.

BUT...

I got a cold sore last night... so the Cold Sore Virus would have lowered my white cells... I had been off zinc because I didn't want to compromise my chemo.... Acylovir is a drug that fights the cold sore virus, I got a script today... maybe by lowering this virus in my system I can raise my Neutrophils to 1.0 by next week and have a chemo.

So... if you do rain dances, do a Neutrophil Dance and wish me an abundance of them... if you pray, then pray my spleen makes me more... if you visualise, go to google images and find them and visualise your hearts out seeing my spleen make me plenty... those who sing, however out of tune but from the heart, sing for my spleen to make some Neutrophils

And I will do all I can to have enough next Tuesday that I 'pass' and they can, against their belief I can, fit me in for a chemo next Wednesday.

thanks

Polly

SEPT 20th 2016

The dream mind is so much more intelligent than the waking mind.  I tell my dream mind what I need... I tell it to dream into existence important resolutions. Often I have called to my dream mind to bring me answers for the dream mind is very deep, it is the moonlight of the soul.... and anyone can join me in this ritual, to ask the dream mind to send them a dream. Share them with me when you remember them.

Here's an oldie from a romantic homeless 13 year old sang in the days with my angel sistas Anty Papa, Sue Windsor, and Deanna Stephens and so I take the hands tonight with all my brothers and sisters world wide for this slow dance together

SEPT 21st 2016

Chris and I have a gorgeous routine... before sleep we ask which fantastical place we'd like our dream minds to travel to... Last night Chris and I went to the land of SPLEEN where neutrophils fill the air, grown on trees everywhere, as fruit, beam in on sunrays and rain from clouds. They have free neutrophil popcorn and a sparkling clear pure neutrophil swimming pool I swam in.

So now.... come with me.... join me..... please SHARE and each night any of you too can ask your mind to take you into the land of Spleen and meet and celebrate there with me as I take in abundant neutrophils. The land of Spleen cannot harm people with good neutrophil counts as one will only take in what one actually needs there.... and autie and non autie artists alike young and old... send me pictures, paintings, songs about this wonderful land of Spleen.

SEPT 21st 2016

I have asked few things of this world... that I not be owned as an object, that I be treated as an equal and with dignity, that I be seen as a human and not bullied, humiliated, paraded, ridiculed, mocked, used, endangered, traumatised, near murdered or gaslighted, that I be allowed to walk my own path and live without fear or stalkers or trolls, that I be allowed to let go what is toxic to me and live in emotional, mental, physical safety from harm.  I am a Taoist, I fear no dark, it illuminated all that was bright and warm and wonderful. I thank the dark for teaching me the value of light.

That most of the world did none of this to me won my heart, my trust, my deepest gratitude and gave me the greatest gift - Joie De Vivre

SEPT 25th 2016

For those wanting to understand what metastatic breast cancer is.... and why it is different to primary breast cancer. Living with metastatic cancer is about one foot in front of the other.... you have to understand metastatic cancer is not curable so its not like primary cancer where you fight your butt off... its about learning to pace oneself to live with it.

Mine is in the spine but extensively throughout the liver. If I can improve from 'innumerable liver metastases' (metastases here means tumours) to 'some liver metastases' I will be in a much better position. I'm having a lot of trouble with neutrophils, meaning I don't have enough immunity to guarantee weekly chemo. I'm hoping this will improve. But this gives some idea on why even 100 people with bone/liver metastases will all have different outcomes.

I can say I have regained my full weight, am eating solid food, full meals, drinking well, sleeping normally and am off pain meds and walking twice 30 min a day... all really pretty amazing, enormous advances on 14 days ago before I started my first chemo. I want to thank you all for all your support... I have no doubt that knowing I had people dancing, singing, wishing with me helped me make the progress I've made this last two weeks.

SEPT 26th 2016

Drum roll.... my liver 2 weeks ago was so full of tumors it was so large it stopped my right diaphragm moving and pressed my stomach and it was so distended I couldn't pull my upper abdomen in at all.... now... the last three days... I can pull my ENTIRE upper abdomen in... I expect tomorrow the oncologist will be shocked how well the liver has shrunk - awesomeeeeee... and yesterday I did FOUR 30 minute walks (four days ago couldn't walk 15 min without a break) ... my energy is awesome .....

SEPT 27th 2016

Sitting by the phone waiting for green light this morning... when I get it I will jump at the chance of a third chemo today... so let's all JUMP!!!!

SEPT 27th 2016

Sorry folks... got red lighted... not enough neutrophils... no chemo this week... trying to make the most of it.

SEPT 28th 2016

And life IS beautiful... if you don't know it you are sweatin' the little stuff, fixating on the discomforts and failing to seize the day and see what IS there... see the world in a grain of sand and you will have no regrets. The only reason to fear death is never having fully lived.... so LIVE, LIVE, LIVE

SEPT 29th 2016

Loved this song from Fame.  I saw this film the year I'd returned to college as an illiterate, innumerate homeless person and had passed with enough score to go to uni... to make my own future if I really wanted one enough... and I did... So now we should all sing, from the heart, regardless of the refinement of our voice... to sing is life affirming
it is to say we are proud to be alive and allowing ourselves to be heard, to be felt, to be known.... and I have sung, danced, composed and played music, sang... and shared it all.... and all of us... we ARE all stars... we came from star dust.... we return to that dust and return to nature and live on in all we have touched.

SEPT 30th 2016

Today made use of a week in which I didn't have enough immunity for a 3rd chemo... with the energy of being a non chemo week my music angel Anthony Julian and I got productive and completed the recording of 6 more songs with my other music angel Phil Smith which will form album number 6. Thanks guys for helping me finish off this bucket list item for music is the voice of my heart and I wish to leave it with the world where it belongs.

OCT 2nd 2016

Me and Chris are off to visit life long pal Scott McLeod for lunch, see his fab renovations and walk on the beach at St Kilda .... so missing a week of chemo has at least been a week full of play ... now there's definitely a touch of Bette Middler in me so enjoy this one...

OCT 3rd 2016

For those who enjoyed the last Skyhooks clip... this is Chemo Is Not a Dirty Word.... oh... yeah... they sing Ego... but today in the chemo suite I was singing Chemo Is Not A Dirty Word to the chemo nurse... so feel free to sing it with me and substitute Ego for Chemo for I've lived my life with little ego and chemo is doing good things...

This Chemo, the god of Abraxane, has shrunk my liver wonderfully... yes those innumerable tumors are all shrinking meaning I have gone from an elephant size liver to something resembling or on its way to a normal size - awesome...

and my liver function blood work is much much improved,... instead of near liver failure I'm heading toward reasonable liver function...

yeah... its a Cinderella drug... so don't get too pie in the sky and lets all stay happily grounded... I've checked that with the oncologist... it'll do the business... give me good quality of life for around 10 months when its known to run out of steam... because cancer cells learn and then mutate, becoming resistant to the chemo until a different drug is tried... progressively more and more resistant... but I can count on around 10 months right now... and that is a life time away :)

Now enjoy... Chemo Is Not A Dirty Word

If I did not have a chemo I would not be here tonight
If I did not have a chemo I might not think that I was right
If you did not have a chemo you might not care the way you dressed
If you did not have a chemo you'd just be like the rest

chemo is not a dirty word
chemo is not a dirty word
chemo is not a dirty word

Don't you believe what you've seen or heard
If Jesus had a chemo he'd still be alive today
And if Nixon had no chemo he might not be in decay
If you did not have a chemo you might not care too much who won
If I did not have a chemo I might just use a gun

chemo is not a dirty word
chemo is not a dirty word
chemo is not a dirty word
Don't you believe what you've seen or heard

Some people keep their chemos in a bottom drawer
A fridge full of Leonard Cohen
Have to get drunk just to walk out the door
Stay drunk to keep on goin'
So if you got a chemo
You better keep it in good shape
Exercise it daily
And get it down on tape

chemo is not a dirty word
chemo is not a dirty word
chemo is not a dirty word
Don't you believe what you've seen or heard

chemo is not a dirty word
chemo is not a dirty word
chemo is not a dirty word
Don't you believe what you've seen or heard

chemo is not a dirty word
chemo is not a dirty word
chemo is not a dirty word
Don't you believe what you've seen or heard

chemo!!!

OCT 5th 2016

I feel honored to live in a time where they have a Cinderella drug that can give me however many good months it can... my father went in 1995, he was given 2 weeks to live and didn't last much more than that. As the oncologist says, he can keep me in the drivers seat for a bit longer... what a privilege.

Chris and I were walking around the block when Chris noticed the most remarkable and rare clouds in the sky.  They were Mammatus clouds... 'breast clouds'.  I had never seen these in my life and they were amazing, like a sky filled with breasts just hanging up there over us.  Seemed so crazy, so apt, so magical, but of course it was a magical time.  I was doing the slow walk to the tourist phase, into the waiting room, down the corridor, to the gate... and so we were noticing everything... the world is never so alive with wonder as when one is dying or living and loving with one who is.  We had always watched, marvelled at and loved nature, and perhaps missed mammatus clouds a few times in our lives, but here they were giving us a sky show.  

OCT 6th 2016

ya never know how shitola becomes one's best asset... when the chemo stops working and I'm ready to go I have an Advanced Care Plan that empowers my medicos to leave my breathing machine off, and night night to the world... I'll be letting my failed respiratory drive do its thing... just ensuring it does... but still.... full on thing to confront... but a slow dragged out to the last breath style death from cancer is the alternative... not my thing... I HAVE a choice... I just wish every other person at their end had a humane choice, the kind we give our fur babies.... it is my wish that as a society through talking openly about death and the end processes in incurable slow deaths, that we can look at the issues with sanity and humanity and not knee jerk me-me defensiveness of 'beliefs'.

OCT 8th 2016

loved this song as a little kid... I had a pop up 60s record player by my working father had left in my room (I was locked in there a lot) and a collection of 45 singles, of which this was one... he gifted me such a musical world... those years aged 2-4 in that room... were terrifying, overwhelming, completely isolating but I had music and my own autistic world and in my meaning deaf world music became a love of voice and sound, made me a musician, a songwriter and singer, became the echolalic foundations to later putting meaning to language I'd found beautiful in songs, music is a huge part of how I think... especially music as metaphor... and echolalia, when it later gets used for its pattern, theme, feel is completely 'metaphor' .... I could hear the passion in the songs... felt they were singing feelings... understood words and phrases sung with passion even in my world lacking simultaneous processing of self and other...

My father encouraged me to use gestural signing which later became the basis of my moving from echolalia to one-word-one-meaning sentences in the acquisition of functional speech by age 9-11.  So I have used this 'home sign' (not conventional sign language) to express myself to Mel Carter's Hold Me, Thrill Me, Kiss Me.  As our 'sadness' became our 'poignance' and when overwhelming and huge our 'epic' this song became the theme song of my absolute love for Chris and his for me. 

OCT 8th 2016

metastatic breast cancer to the liver
statistically usual is 3mths-10mths or 3yrs if the liver is able to be resectioned.
the former applies to extensive/innumerable tumors to liver, the later, up to four. I have extensive/innumerable tumors to liver. We're doing a great job shrinking them, but this will only last a maximum of around 10 months when this drug is known to stop working because the cancer cells become resistant to it.

20% with liver mets can live to 5 yrs... depends on immunity... and whether and how they respond to drug after drug after drug... I'm immune deficient and not able to do full chemo.  I'm also 'triple negative' meaning there are less drug options to me and no hormonal safety net they can turn off... I eat, cancer eats, its that simple...so I may well be in the 80% who don't get that far and I'm a realist about that.

9,999 out of 10,000 with metastatic cancer will die of their metastases.  As someone immune deficient, triple negative, unable to do a full chemo regime and from a family where cancer is rampant, it is pie in the sky to imagine I'm going to be that 1 in 10,000 and I'm ok with that, grounded, realistic and therefore able to healthily transition.

My mother's lot have a 70% cancer rate... I'm cousin 5, the eldest of them, the first to go metastatic. The youngest died aged 4. The others, bowel, breast and bowel/lymphoma/melanoma... all younger than me, all surviving, not yet, hopefully never metastatic. My father had bowel cancer at 55 and went aged 59, when it became metastatic and spread as bowel/liver/pancreas and he died weeks after that diagnosis.

So I'm not that one off anomaly who was the first one in the family with cancer... or who had not lived their life with immune deficiencies.

The chemo I'm on will last up to 10 months, may well last less (doing ripper job, shrunk the liver brilliantly) when cells mutate and become resistant to it
2nd line chemo treatment may or may not work... cancer cells ultimately become resistant to all chemos and each new drug has less effect

I'm not able to have the 3 weeks on, one week off, or full dose chemo because I'm neutropenic - immune deficient - so I'm on a reduced dose 2 weeks on, one week off... not ideal but at least its something.

Yes, new drugs are coming out all the time... but these generally take 5 years from working in petrie dishes to being tested on animals, to being trialed on the select few accepted into a study, and at that point these 'miracles' may be found to not work anyway.

Yes, the internet spouts a gazillion snakeoil, quick fix, conspiracy warrior 'cures' and theories. Fact check them with Quackwatch, with Google Scholar or even Wikipedia's entry for List of unproven and disproven cancer treatments and you'll get a little more informed and grounded.

so, those are the facts
and we can build whatever hopes out of these we like/wish
and they will be realistic ones.

OCT 9th 2016

screaming against cancer or dying is release but staying with anger and rage is futile and wastes precious time... I went and saw Anthony Julian in Hairspray last night with Chris... it was fun, silly, surreal... we had a ball watching Anth in the show and the show was all 60s Americana...when the show was over we went up onto the side of the stage and some folks took a pic for us.  We were documenting this time, capturing it for Chris and others to visit and see how much we lived in this time of dying.

Back home we snuggled with cats, ate out at a local Indian place we love, all in all... nothing to scream against, just enjoy day by day... and if you know I have always been with you and always will... there is nothing to scream against... when you feel anger about these things, find the peace... it is the balance to the rage.

OCT 9th 2016

today a wonderful tree we love came down... it was in big winds and just snapped off at the base... the tree equivalent of a sudden heart attack... death comes to us all... sometimes suddenly, sometimes we get to see it through consciously, with awareness, make peace with it. Death is inevitable, natural, a product of having been born.

OCT 10 2016

Some of us are born to be short, others bald, others with bad eyesight, others prone to 'rust' they call cancer... there you go I'm a fab ol' Holden ute LOL and nobody ever wants em to die but ya see their skeletons out in fields in the bush... and try keepin' rust out of one of them!

in my case my father went from bowel cancer at 59, my mother's lot... lots of lymphoma, bowel cancer... so even if breast cancer didn't 'get me' I'd likely soon enough be facing it all in another form... a cousin 10 yrs younger than me has already survived melanoma, lymphoma and bowel cancer... so this also grounds me and brings me realistically to a place of acceptance.

If you think you will miss me... then find me within yourself

OCT 12th 2016

I had made it to my birthday and turned 53!!!  

Chris and I had a great a great romantic dinner at Wild Oak Restaurant last night...the staff were awesome, food great, atmosphere delightful and they made us these GF/CF/sugar free specially made bombe Alaska for desert...

OCT 13th 2016

For 10 years Chris and I have hosted the DIVERSITY FRIENDLY DINNER CLUB at HONEY THAI restaurant in BELGRAVE (1678 Burwood Hwy, Belgrave VIC - right by Belgrave train station) at 7pm on the FOURTH TUESDAY each month...

The gorgeous Kelly D'Cruze is our new wonderfully welcoming host who will be there to meet and greet newbies.  At this point, regardless of chemo, I was still able to go to the dinner club with Chris.  

OCT 18th 2016

We had an amazing 53rd birthday party for me/living wake.  Around 60 people were there from all walks of life.  They brought plants and planted a memorial garden.  They created a big roll out wall mural expressing their thoughts and feelings about life, the party, about death as part of life, they danced, sang, ate, laughed, cried.  It was awesome for me and Chris and helped us turn a corner with this new road called metastatic cancer.  We felt supported by wonderful people.

The party was an amazing walk in the shoes... it was wonderful, beautiful, communal, celebratory, poignant, connecting... but also rawly real, totally face to face with the balances of love and loss, of life and death, of how alive we can be staring mortality in the face.... people think facing death is all and only terror, shock, endless tears, despair or big flamboyant bucket list stuff... but I think the party really cut through the stereotypes we have about dying, the spectre of death, how does one pack up one's life knowing one is going, what is 'a life', what its like valuing as much 'everyday life' one can get whilst still having a body.

OCT 19th 2016

Deanna Stephens, remember us as 14 year olds singing this one in the back of your dad's ute on the way to Bayswater? Eva died young from cancer and there we were blissfully ignorant about such things... like Eva Peron, I did not seek fame but handled it once finding myself in it, and like Eva I too found it an illusion, and not what was important... for me what was important was having a 'voice', finding 'tribe' and developing purpose out of which came much legacy which gifts me so much with no regrets at this point in my life.

OCT 19th 2016

We have 7 year old Mini and 3 year old Max but they don't sleep in our room. As my use by date is rather limited I'm thinking it'd be great if they can sleep in the room, especially once I no longer have a body to be here physically... plus I think it will be important for the cats in adjusting to me suddenly not physically being there and to Chris so used to snuggling me.

I didn't have cats sleep in the room because I'm on a breathing machine for failed respiratory drive and because I feared that with PTSD if one jumped on me suddenly I might swipe one and it would break my heart.

But we decided it was now time to give it a try.  We created beds for them within the room and made them welcome.  They were so much happier and we all adjusted quickly.  Best decision, wish I'd done it years ago.  We now get to sleep as tribe and once I fly from the body this tribe will continue with their Cat Dad Chris.  

OCT 20th 2017

Life is a Cabaret... come to the Cabaret... live out loud... joie de vivre... carpe diem... BE in your life don't just APPEAR in it... be the dandelion and let those dandelion seeds spread far and wide into land of the living ...for then you may have no fear of leaving, transitioning out of your vehicle, your husk, your cocoon, the thing we call the body... for you live on everywhere.

Chris and I went out to Cardinia Reservoir which we love.  On the way in there were alpacas... my favorite buzzy 'stretch teddies' (long neck teddy bears).  Chris and I were buzzing.

OCT 20th 2016

So wanted to lay in a field with sheep... thanks Anty Papa you rebel for having no problems with me making my way through the fence to enjoy being a sheep under the spring sky with them all ... so funny... I've spent my adult life doing autism self advocacy but had I got caught in there by the farm owners I'd have been doing death self advocacy!.... oh, excuse me, I have a short use by date  and really wanted to lay with your sheep...

OCT 21st 2016

Too many people freeze in the headlights when faced with their own death or that of those they are closest too, including animal members of their family. Yet, we will all encounter these experiences. We might as well empower ourselves, educate ourselves, familiarise ourselves, rid ourselves of the taboos, stereotypes, projections, mythologising, presumptions of one-size-fits-all.

Even if all one has are a months, not years, there may still be life to be lived, transitions to be made and these can even be poignant, epic, warm, wonderous, even beautiful.

OCT 22nd 2016

To my pal Scott McLeod, and all who will miss me... take the time to spend time in your own world, and if you seek me, I will be there to listen to you, laugh with you, sit with you.. someone of course once taught me this...(Scotty) many decades ago.

OCT 21st 2016

had my pal and Sista Jingru Li over tonight and we played pool (badly) which was a good laugh... she said she is very bad at pool... but she won... so that makes me... er... even badder ... oh, no...

OCT 22nd 2016

as a muso I had symphonies create themselves in my head since I was 3 years old swaying to invisible music and playing the notes on the air... music was always my soundtrack of my life... I think musically, it is my shorthand, it was my first ARTism... it is married to the movement of my paintings and sculptures and the rhythms of my poetry. I will live music to the end and beyond in all the music I leave behind... special thanks to all my music angels... Dee who taught me to sing with a pal just for fun, Scott Mc Leod who taught me it was safe to bring my music out of my head and into the world, Stefan Kissel who taught me I had a voice worth hearing, Anthony Julian for being the other half of our crazy Aspinauts duo and learning, recording and producing readable manuscripts of the classical music I'd never played publicly together with Phil Smith the recording angel in my last months and the love of my life Chris Samuel who was my muse the last 17 years, the Aspinauts roadie and photographer and the man I so enjoyed playing my classical music to.  

OCT 24th 2016

just talked to the funeral home about a pre-paid... decided not only no grave or interment of my ashes, no cemetaries... but I don't need a funeral either... I can just have a memorial - awesome... so when I leave the body I can be cremated without everyone weeping thinking that body is ME (which it is not... I'm the personhood that lived in it which lives on in everyone else) and then the ashes can be given to Chris when ready and then a memorial out in nature... how cool.

OCT 25th 2016

THE TOUGH CONVERSATIONS

after a week off chemo was surprised to have piddly neutrophils today.. only 0.7 and 1.0 is the minimum for chemo... but the oncologist approved reduced chemo in any case...

we talked about it... the fact I can do 3 weeks of full chemos then a week off and only manage 2 weeks of reduced chemos then a week off means that it will be harder to hold back cancer in my liver.

we talked about what happens after this present drug stops working.  We talked about using another chemo drug when cancer cells have formed resistance to this present one... he said at present the stats are that 30% of people respond to a second chemo drug...

so at least we know that after July 2017 I statistically have a 30% chance of responding to the next drug... and of even if I'm in that 30% my dodgy neutrophil levels will also create the same obstacles... that even if I could be in that 30% that if I don't have enough neutrophils for full or any chemos at that point then being in that 30% won't be worth too much.

metastases to the liver presents rather specific problems if the cancer outruns the patient... the liver has an awesome blood supply with which cancer cells feed themselves directly so it can be much harder to hold back than bone, and when liver spreads the liver enlarges which restricts the diaphragm (breathing) and stomach (getting food/water down) so once they can't hold back liver mets the impact on other organs can be quickly overwhelming.

and if love could lift my neutrophils higher they'd be awesome, but if it can't it is lifting my attitude :-) ... I feel a song coming on... DANCE WITH ME?

OCT 25th 2016

In the midst of chemo I managed eating my GF weetabix... so Chris and I dedicated some dag dancing to this great achievement... 

OCT 25th 2016

er... they give ya steroids with ya chemo... say no more

29th OCT 2016

We met with my younger brother Johnny and went to Bundoora Park Farm where they had lots of farm animals.  It was a buzz and I loved the smells of farm and the animals.  It was a lovely time.  

OCT 31st 2016

transitioning the cats... they are now coming to Chris when he calls them for food - yay... and tonight Max (who is phobic of people and largely bonded with me) came into the room with our visitors and asked CHRIS to come and sit on the bed with him for some patting - awesome... I'm chuffed... Max has stopped playing up and is coming in at dusk when called... we no longer open the big door for him and he's 'got it' that he has to come in through the cat flap now or no food until he does - phew!... and Chris has taken over all the cat care rituals thanks to mobile phone reminders - proud of the man...

NOV 2nd 2016

Went to bloodwork on Monday with my friend Jingru Li ... I took Neutrophillo with me... which was made by my ol' pal Scott McLeod and for good luck the oncology nurse rubbed the glass vial against Neutrophillo... well something worked... today my neutrophils were 1.5....minimum for full chemo is 1.0 and other than my first chemo in mid Sept I've been under 1.0 each time so only allowed a reduced dose... but today... FULL DOSE... woo hoo....

why am I happy? Because after the first chemo in mid Sept the liver shrunk enough to allow me to eat and breathe normally... and slowly the still impaired liver function results went from improving to plateauing this last two weeks... ie no worsening, but no improvement. So I knew that only with full dose chemos could I ever improve on a 'still enlarged and impaired liver'.

Even if we can reduce the liver tumors in size and number further, the cancer cells will eventually ultimately mutate and the chemo will no longer be effective... but if we can shrink all these tumors further in size and number, then when the chemo stops being effective I'll have a bit of breathing space before all returns to the point I need to leave the body... so that's why full chemos matter...

Even better, if I could get consistently normal neutrophil levels (unlikely, never have my entire life) then we could do 3 weeks on, 1 week off instead of the 2 weeks on, 1 week off we have to do because my immunity doesn't hold up for 3 weeks in a row. That could lend me around 4 months I might otherwise not have... but I'll take whatever I get.

NOV 2nd 2016

We are ALL Never Ending Stories... all who came before us helped us become who we are... all of the personhood that we leave behind shapes those impacted by it, inspired by it, bouncing of it, entrusted with it ... WE do not die... the only thing that dies is the organic vehicle carrying our own private viewing of what we misleadingly term OUR life... for our life was only ever in part ours... the collector, the sculptor, ... our body is carbon... Star Stuff... our personhood is the combined product of all predispositions we inherited and all that life and connections, for good, for bad, did to shape these.

There is no passing on.... for we have already done the passing on throughout our lives, and the receiving of the passing on of the personhood of others into the tapestries of our own lives.

For a humanist, there is also no heaven, no hell, for both are here in the lived life, not up in the sky or deep in the bowels of the earth... it is up to us which balance of the two we live or how we work with the heavens or hells we get along the way.

Nor do I need any sky fairy of any denomination for I am neither in-doctrin-ated to take any of that as gospel (pun) nor do I have enough fear of death with which to require one to watch over me, protect me, save me from a very natural process of the organic matter known as a human being.

As a Taoist I am grateful for all the hell for it made all the heaven so illuminated and hence a life well lived and resolved one in this last jog around the block. I do not cry for the moon, only strive for the strength to face that the moon and I are what we are.

NOV 2nd 2016

FROM WIKIPEDIA "Alternative Cancer Treatments'

So before you think to waste my precious time and energy, attempt to derail my passionate commitment to realism, the transitions it allows me and all closest to me and the peace and grounding it gives me... and before you even dare to justify the bad timing of orating your BELIEFS in 'big pharma conspiracies'... just dare a sobering moment to get your minds into this....

'People who choose alternative treatments tend to believe that evidence-based medicine is extremely invasive or ineffective, while still believing that their own health could be improved.[13] They are loyal to their alternative healthcare providers and believe that "treatment should concentrate on the whole person".[13]

Cancer patients who choose alternative treatments instead of conventional tre
atments believe themselves less likely to die than patients who choose only conventional treatments.[14] They feel a greater sense of control over their destinies, and report less anxiety and depression.[14] They are more likely to engage in benefit finding, which is the psychological process of adapting to a traumatic situation and deciding that the trauma was valuable, usually because of perceived personal and spiritual growth during the crisis.[15]

However, patients who use alternative treatments have a POORER survival time, even after controlling for type and stage of disease.[16] The reason that patients using alternative treatments die sooner may be because patients who accurately perceive that they are likely to survive do not attempt unproven remedies, and patients who accurately perceive that they are unlikely to survive are attracted to unproven remedies.[16] Among patients who believe their condition to be untreatable by evidence-based medicine, "desperation drives them into the hands of anyone with a promise and a smile."[17] Con artists have long exploited fear, ignorance, and desperation to strip dying people of their money, comfort, and dignity.[17]"

NOV 6th 2016

Before you attempt to mythologise me, to use terms like 'brave' when what you mean is that I have and work constructively with realism, or seek to raise me above others when I am what I always was, equal to and among all others... then remember we have all flown and we have all crashed.

Where I come from I was NO HERO… just a homeless autie escaping the endangerment, madness and abuse of a highly dysfunctional criminal family in a household full of alcohol and parties, who was out in the streets in a duffle coat in the early hours sleeping where I could, abusing substances because I couldn’t handle the world, couldn’t handle being an apple seen as a broken orange, couldn’t handle the ‘appear’ world of bullshit, whitewash, facades, couldn’t handle the dog-eat-dog using and you-are-meat misogyny, couldn’t handle trauma upon trauma I had not yet had help with ….

I never wanted to be a hero either… not then… not even during my career as an author, autism consultant and lecturer… inspiration is a good thing, but idealisation is no haven, no nest, it is not grounded… and when we idealise others we forget we too could become our own hero
and hopefully I grew up to inspire people to become their own hero and equally accept and embrace the humanness of their own marvelous failings (for how else do we strive and learn, take shit and make sculptures).  But always remember the equal value of both and never be ashamed you have journeyed.  Those journeys are part of the fabric that made you who you are.  

NOV 9th 2016

in Sept when my liver mets were diagnosed I was really struggling... a serious condition... eating, drinking, breathing were all challenging... pressure inside all the time and difficult to sleep... incredibly dry mouth, constant taste of tomato soup... reckon like being 9 mths pregnant because everything inside was being squashed by a huge liver... but I'm in a satisfactory condition now... all that is well managed... but at least I know what's up ahead... and I also know that without a failed respiratory drive I'd return to that and worse... so I'm so grateful I have my 'out' when I'm ready. I'll do it in the safe professional and experienced hands at the palliative setting of the cancer hospital... I'll have sedation and in accordance with my Advanced Care Plan, leave my breathing machine off... night night and no more mornings and this trio can go drink a toast to my departure


Think I should hang out to see if some Sky Fairy finds it in God's Will to save me at the last moment... well how about you trust your end or that of your nearest and dearest to your sky fairy of choice and leave me to my flying spaghetti monster because the long road with extensive liver metastases can mean vomiting blood, unable to eat, drink, struggling to speak and breath and being crushed by your own growing enlarged liver as it forces everything else out the way... that is not dignity

and anyone wishing me to survive metastatic breast cancer must ask themselves... survive for... bowel cancer... lymphoma... for both are rampant in my cancer side of the family... or to live to be 95, blind, deaf, immobile and everyone I've known already dead?... everything we wish for entails acceptance of a realistic alternative reality....careful what you wish for.

As for afterlife, I live on in all who value me in their own world and all I helped become the people they are. My thoughts, feelings are a product of my functioning brain... in death my brain and all its capacity for this and for memory dies as part of being organic... but my impact, my value for others... this lives on in them... anything else is from my perspective mythologising, gratuitous and losing groundedness and generally stemming from death/ending/purpose related anxieties... I have none of those.

NOV 17th 2016

Facing death... Is it all about positivity, or is it broader?
I've been trying to understand what has shaped my perspective to see if it really all came down to positivity... or something else.
I wanted to know this because facing death is so hard for many people, so why was this transition relatively 'easier' for me?

NOV 18th 2016

cancer is, in part at least, a failure of the immune system... just like knees and eyes and hair follicles can fail. My immune system failed me and cancer cells failed to be cleaned up by my immune system. I accept I'm organic and that I will have failings of part of that and that some will be mundane, like needing glasses or a filling, but some will be life threatening, indeed in my case life ending. I'm at peace with that... and it is not an easy thing to be at peace with, but in a world of logic it causes me less pain to understand it and make peace with it than fear it or rail against what I cannot change now that mine is metastatic with the writing on the wall

NOV 22nd 2016

My neutrophils (immunity required for chemo) were 0.6 ... lowest level yet ... The cut off for chemo is minimum of 1.0... regardless, the oncologist approved a partial chemo - phew!

apparently 3 weeks on, one week off (recommended) is out of the question as neutrophils could go even lower by week 3 and if they go lower things like neutropenic fever can kill me... not a good plan... I conceded to stop asking if the oncologist would dare 3 weeks in a row. But better something than nothing...

liver dysfunction has worsened a bit, tumor markers have stayed stable... the plateau effect of the chemo is a usual part of the months the drug commonly works for... and this plateau is a product of the cancer cells building resistance to chemo (what can eventually mean these multiply out of control)...

Going for CT this Friday to learn how all those tumors are going in the liver... we obviously shrunk them in the first 3 chemos (I've had around 6 now) but then started to plateau... so this will give the oncologist a base line to measure clearly when the chemo has fully lost effect.

DEC 6th 2016

CT results today and though they now found 3 tumors in my mid spine this time (previously 1), all appeared to be 'contained' due to chemo (apparently they now have a kind of shell around them which the oncologist said shows they are healing up)...

and the innumerable liver tumors (the far bigger threat) have improved around 75% with the largest shrinking a bit, others shrinking a lot and some of the tiny ones disappearing... awesome... this is also part of the transition from struggling to eat, drink, breathe in Sept to now eating, drinking, breathing without difficulty in Dec...

so hats off to chemo for it has really kicked butt... and this chemo drug, Abraxane, has a great reputation for doing this...

but please don't mistake this for curable primary cancer (where with breast cancer for example 70% will find it 'cured' and never develop metastatic cancer) ... secondary/metastatic cancer is very different... it is in the bloodstream and lymph which is how it got into bone and liver and so this situation is not a curable one ... 9,999 of 10,000 with metastatic cancer will die from it... some sooner, some later... and yes, the cancer cells will become chemo resistant sooner or later and then will begin to grow again... I say this because understanding and working with metastatic cancer for what it is is very grounding for me.

so for now, I'm very very pleased to hear how well the chemo has changed by September trajectory from 2 more months to live (so would have been dead by this Dec) before chemo to a statistical expectations of up to 8-12 months from diagnosis.

On the down side, my neutrophils today were the worst so far... 0.4... cut off for chemo is 1.0 but the oncologist still gave me the nod to get a partial chemo... clearly he thinks the risk is worth it because he wants to keep me having even partial chemos for as long as this is still effective in shrinking/holding back the spread of cancer cells/tumors... good on 'im.

DEC 6th 2016

Hilarious time in the chemo suite today (awesome bunch of fab folks in there)... an oncology nurse said I had a good chemo education so far... I said... yeah, I did my undergraduate degree in 2011 but came back to do an post graduate Masters in chemo education this year since September... I told her I am hoping I don't graduate too soon but that I new there'd be a graduation party... then I said to Chris for a laugh that of course I didn't realise I had signed up for a course in dying... guess I should have checked the fine print LOL.... but it was funny because on the way out were actual folders saying 'Patient's Chemo Education'... wonder if those doing the undergraduate degree should get a heads up that the post graduate degree is probably not recommended if avoidable. Movin' on up, eh?

DEC 9th 2016

Today is the 16th wedding anniversary of me and my wonderful fella, Chris Samuel... can't fully express in words how lucky I feel to have had these 16 years... I know this may be the last one I have in this body but I am filled with only gratitude. It is not that we lived nothing but sugar coating.... we have had the whole theme park and embraced it all in all its colours. To know love this truly, what an honour. Chris Samuel, I LOVE you to the stars and back an eternity and beyond and will walk with you forever.

DEC 11th 2016

Chris and I had a brilliant anniversary at a little cosy bnb farmstay... hang out with lambs, sheep, miniature horses, chickens, ducks, geese, cows, alpacas, goats and three dogs... we were blissed... such a fun time and a nice dinner with some pals who came out to a dinner with us, then walks through pastures and more animals including a lily pond with herons :-)

DEC 16th 2016

strength, like love, has many forms... we all know the obvious ones... endurance, striving, perseverance... but with metastatic cancer strength means things like non reactivity, making peace with one's situation, handling realism... but I have also learned along my life's journey that strength is sitting with acceptance of one's weaknesses without judgement, it is listening to oneself and others without agenda, it is asking for help when truly needed, it is honestly facing one's own hypocrisies, biases, investments and weaknesses.  Can't say I've always got it right, but I've done well enough to get an 'A' for effort.

DEC 16th 2016

Went and saw Anthony Julian singing his heart out in Scrooge tonight with my pal Deanna Stephens, so fun seeing you doing what you love Anth, especially a Christmas show this Christmas... it will be etched in memory now.

DEC 17th 2016

"In my end is my beginning' wrote TS Elliot....

A video presentation on The System of Sensing ... watch it if you dare... then dare to understand it... practice it... remember it.

My World = One's Own World. This is our first world. Before all of its later cladding and contortions, it is at first a place of sensing, beingness, the preconscious mind and unknown knowing. It is the place where we understand self in others and others in self through the skill of mergence.

The External World = The physical world known through our sensory experiences as processed through our bodies/brains and experienced as sensations, thoughts, emotions, connections. This is a directly hands on world where sensing and beingness may be relatively strongly intact.

The Interpretive World = the world of applied meaning to incoming experiences that progressively builds mental structures and frameworks that ultimately filter our direct sensed experiences of the physical world and develops conscious mind as the primary guide.

Ego World = Ego contortion that further clads, alters and filters the logical meaning we get from experiences of the physical world and further buries our original capacity for sensing and beingness. This can be indoctrination, culture, economics, identifications, rewards, honed addictions and competition for social, economic, cultural 'currency'.

DEC 19th 2016

Scott McLeod took this pic of me as a Christmas Tree this weekend... see life is full of new experiences... we then went out to get fish and chips and have a picnic outside Luna Park in Acland St St Kilda. As a tree I greeted people along the way, wishing them a Merry Christmas. At the fish and chip cafe a little girl, around aged 4 and dressed as a fairy was there. Scott offered her to restring me and she went around and around until she'd restrung me as a human Christmas Tree. Then Scott and I went for our picnic. I enjoyed being a Christmas Tree out and about at Christmas - thanks Scotty!

DEC 21st 2016

Merry Christmas to you all from me and Chris (here having a romantic snog in one of the marvelous front yards of the famous 'Christmas Street' of Chestnut Ave in Ferntree Gully which we've visited the past few years). Thank you so much everyone for your support through 2016. 

DEC 24th 2016

I do not hate my cancer... we walk together... it is showing me how to transition toward death... a journey many never see for they die suddenly or so fear, rage against or hate the threat of death they don't walk this journey the way I choose to...

As a Taoist, I find all challenges can also bring gifts... my cancer is no exception... it confronts me to meet it with realism not denial... and in doing so it gifts me with transition... if I walk with it... we are on each other's leash... I do chemo to keep it from leading but it also leads me... death comes for us all... and this is my time to transition so it is ultimately with grace and acceptance...

There is a time to fight and a time to transition and there will be a time to surrender with grace... my doctors encourage me to enjoy my time, celebrate my life, not fixate on fighting a fight I cannot win though I happily go to chemo weekly as part of my dialogue with my cancer and our negotiation for time.

(pic with me and Jingru Li taken by Gavin Halpin)

DEC 27th 2016

Seeing the oncologist on Thursday. Today things were a bit tough again with delayed stomach emptying so had only been a degree of reprieve the last two days. Noticed the right side (where the liver is) is tight as a drum, no movement between liver and ribs.... not a good sign and one that would fit with the liver having become enlarged again (which would happen with increased tumors if chemo has failed). Guess I'll know soon. Disappointed (but accepting) if the chemo has run out of steam so early but glad I got so much done since Sept and had so much more time than we'd otherwise have had.  Might as well be time for some satire...

DEC 29th 2016

Today's neutrophils were a piddling 0.3 (my drug not recommended for levels under 1.5)... got a reduced chemo anyway!

The onocologist did physical examination of the liver...not significantly larger... which is good but he said 'inconclusive' and he's still concerned that I'm having symptoms indicating liver may have worsened... so CT scan next Tuesday to get a visual of the liver to confirm whether present chemo has stopped working. The difficulty with eating and breathing tightness may also be 'ascites' which is fluid accumulating due to the liver metastases... that will show on CT and if a problem they stick a needle into my abdomen and drain out accumulated fluid as required to relieve pressure - awesome!

"Ascites is the buildup of fluid in the abdominal cavity. Ascites caused by cancer is called malignant ascites and accounts for 10% of people with ascites. Malignant ascites appears most often in people with breast, colon, gastrointestinal tract (stomach and intestines), ovarian, pancreatic, and uterine cancers."

Results of all next Thursday. So its a wait see situation. Next week if CT scan shows worsening he'll try a different chemo drug, see what milage we get out of that.

Yes, it is clear I'm an atheist doing a spiritual journey with cancer. I understand that its instinctual for Christians to call for or offer prayer or feel that anything positive was due to their prayers and anything negative due to me not yet taking the ghost of a dead Jewish guy from 2000 years ago as my personal saviour or it not being 'God's will' to save me (or the other 9,999 in 10,000 metastatic cancer patients, including children, who will die from their metastatic cancer). However, for a moment I indulge my own belief system, one of realism and logic which gives me the utmost peace and comfort in transitioning in my last year with a body. I have also told those wishing to pray to pray for a peaceful transition and better still to covert their prayer into dancing, singing, skipping, for then I know they are in sync with the life force within then, within all of us... if you like the god-ness within all living things.  So celebrate life with me, and the fact that death is part of life, not separate from it, and dance with me.

 

DEC 30th 2016

As a person living with metastatic cancer I get a lot of people saying they'll pray for me. They forget that though I know the literal meaning of such a sentence that I have little/no personal experience of the same. When I care deeply I say things like 'is there anything I can do?', 'I hope you can work with this as best as possible', 'I'm sorry to hear you're dealing with something this challenging'.... perhaps it takes more reflection than the shorthand of 'I'll pray for you' but it comes from being really present when responding.

So when I get 'I'll pray for you', I try and translate the language of Christianity so we're on the same page...

A friend last night reminded me that when Christians say they'll pray for me that though some mean '

I don't know what to say'
or
'I feel helpless here'
or
'I will say what a Christian 'should' say here'...
that others mean
'I care about you and wish it was different for you'.

So I guess 'I'll pray for you' is like 'I love you' and really it would be better when sending wishes in the direction of someone with no Christian upbringing or background, no in-doctrine-ation into the religion (I have the values but not the religion) it would be heard better if we use the shared cross-cultural language so it is understood for what it is actually saying so that can be heard.

I think many Christians don't realise that when they say 'I send a prayer' that to a language literal atheist it means 'I have a thought/feeling in my head and believe I am transmitting it across space to you'.... but if they sing and dance and skip I KNOW they will be in a shared 'life force' with me and the world and feel they are active in the expression of that caring... plus it makes me happy they are finding the happy in this challenging and poignant situation... which is what I'm doing. 

Until then I will translate.

people who get the world singing along... say it with a song... sing it out in whatever voice you have, typed, hummed, in your head, out of tune, in the shower, out loud in the street... watch the magic of of it for to sing says 'I live'... in the words of Liza, Life is a Cabaret ol chum

Our gorgeous 'Paint Brush Warrior', Max

DEC 30th 2016

I decided to share this journey with others knowing we all needed to transition with it, including our fur babies Mini and Max... I wanted to share how losing my life in my physical body and it would not be the end of the essence of 'me' for if they knew how to find me, the 'spirit' of me would continue within their own worlds, but also giving them the opportunity to walk alongside me in the dying process, hopefully befriending it and living with loss knowing it gives gifts of poignance, of nostalgia, and I would walk so much more strongly in their own worlds once I could no longer walk in mine.

 

 

JAN 2017

Chris and I have been more than husband and wife, more than lovers, more than family to each other.... we have been incredible best pals. We have spent 17 years in each other's company and we are still so interested in each other's lives, thoughts, feelings, learnings, experiences, silliness and bad jokes.

People imagine when I leave my body that he'll be a man who has 'lost his wife'... and he will be that. And they say (well intentioned) things like 'so have you given him your blessing to date?', or 'don't worry, there is hope, there are so many online dating sites now'.... That may be their style, reflecting their own marriages and losses but for 17 years Chris' style of a relationship has been being with someone with more than 'checklist compatibility'.

With him migrating here in 2002 and me with only an intermittent connection with my younger brother who I commonly had no contact with for years at a time, we were also both family to each other. There's plenty of people happy to be 'family' for a moment... and enough drowning people or rescuers willing to play the 'family game', but it doesn't cut it. When someone is really family its not a game, a role, a cardboard cut out. Many people don't even find a sense of family with their biologicals. If one does it is an awesome thing but it isn't something immediately replaceable.

More than partners and family, we have been best pals. You can't just get that like you might shop for a new tee-shirt. When you meet a best pal you know it. I knew it when I met my closest pals throughout my life (some of whom I'm so lucky to still have around me) and I knew it the day I met Chris. We had 'warm fire' and it was cosy, fun, integral, sustaining, a place to grow and learn and adventure and to just 'be'. He can't just go down the 'relationship supermarket' and 'get another partner' because best pals aren't found that way.

One is so lucky if one ever forms any that are so enduring and it is like throwing a Yahtzee if one actually has a great sexual connection with that best pal and is lucky enough to meet them when available and sane/mad enough to know when you want to house share with them and gutsy enough to commit when you realise you want them to be your family for the rest of your life. I got that, Chris got that.

When I leave my body, in time, sure, he'll find a partner, and he will have the 'family' and friends within our/his communities, and if he so deeply misses his closest pal of 17 years, I take solace that he'll be connecting with my other close pals who will also be losing me and for whom, I will also continue to be there in their hearts and minds, walking with them when they wish that.

I told Chris that when we lose a long term, forever closest pal, a bestie, that our friendships within the community amount to a sort of dispersed best pal.... sort of like 1+1+1+1+1 also equals a 5. I married my closest pal, he married his. Though he will lose far more than 'his partner', neither of us have any regrets whatsoever to have been so 'both feet in' even if it means that the loss is so much more extensive.

Everyone does loss and bereavement differently. Some where it like a black cloak of misery and 'just survive' through the rest of their lives. Some, either allergic to loss, perhaps had never loved as deeply as they portrayed, or never got/did a healthy transition toward their loss, throw the baby out with the bathwater seeking quick 'closure' as though loss were some 'four letter word' instead of being part of the gift of love (which for some is also a four letter word they just dip their toe in and never truly give their heart to). For some its mechanical and solved by a shopping trolley approach of 'finding someone to fill the space'. For some its a time to surround themselves with a menagerie of animals (I'd have been this one). For some its a time to gather with community, long term friends, interests, nature, pets and stay grounded and alive as they walk healthily with their loss as well as all they love of their pre-loss life whilst embracing all that develops organically as their new life (this was Chris' way and would also have been mine). There is no one size fits all anymore than there is one size fits all autism.

This is why transition at the end is so important to those going through what Chris and I are going through... to help the one that lives on toward the changed life that will take them forward... and only realism fully embraces the ability to put transition into action and fully embrace it together in the time that is left.

This is why pie in the sky hope for someone in their last months is no gift... it is a time waster, an energy waster, distracting from the time one has left. We have so enjoyed our months since September 2016. It has been wonderful, poignant, fun, rich, warm, fabulous and I'm so grateful to all who have supported us and Chris in that.

thank you so much.

JAN 11th 2017

The 'Hope Thing' in a context of metastatic cancer .

JAN 11th 2017

Tomorrow I'll go see Katoomba with Chris :-) first time since 2002 when we first came from UK to live here.  Our fab old pal, Bekki, is here with the cats and so happy Max actually smooched with her and is sleeping in her room... so proud of that fur baby

JAN 16th 2017

Had a wonderful time in Katoomba NSW this week with Chris.
I don't believe in Bucket Lists as when in hospital two days a week its everyday life that is the big buzz... but Katoomba was our first Aus holiday in 2002, so we wanted to return for the book end.

I walked 12 km on Fri/Sat this week in Katoomba
looks like I may be in the 30-40% the latest chemo works for...
if so we'll know in 2 weeks...that could take my current trajectory from Mar-May to May-July

JAN 17th 2017

Neutrophils were 0.9... usual minimum for chemo is 1.5 but my oncologist knows I'd have been out of the game back in Sept 2016 if we'd played by those guidelines... so he has continually given the nod for me to have chemos... so I'm still here in Jane 2017...

plus given I walked 12 km on Fri/Sat this week in Katoomba (week after first chemo on the new drug) looks like I may be in the 30-40% the latest chemo works for...if so we'll know in 2 weeks...that could take my current trajectory from Mar-May to May-July... would love to see autumn leaves.

Here's a silly pic from the filming of the doco, Nobody Nowhere (Paper Owl Films) at the end of last year... found my 'sister' in Yesterday's Treasures where we did a lot of filming...

JAN 17th 2017

To love is TO EMPOWER and perhaps this is never so pertinent as when talking about someone who is in their last months in the body.

It is great to offer 'helping' someone to HELP THEMSELVES, for this is EMPOWERING, but to parentify (to want to play parent and glory in the babying of another adult, imagining this as 'love'), is to fail to empower them, it is to DISempower them, which is a denial of it being THEIR life you think you are caring about, respecting or having unconditional love for.

And this applies whether the person is a child (to love is to EMPOWER), an elder, a person with even severe disabilities, or even and perhaps especially, a person who is ill or even in their last months or weeks of life, wherever possible, even to the last, to love is to empower, to care is to care enough to help in a way that empowers and never puts the person into baby mode.

Even if they are scared, terrified, then, sure, acknowledge that, be kind to that, but empower them to remember how whole and strong and resilient and resourceful and capable of endurance and acceptance that they ALSO are. To fail in doing this is to rob them of this essential part of their own journey.

Cancer, especially metastatic cancer and even more especially those facing end of life in their last year, months or weeks, attracts many strange behaviours.

Cancer may attract narcissists who find the opportunity for admiration irresistible and so wish others to know how central, essential and important (above all others) that they are to the person who is about to leave their physical body.

Cancer may attract drama addicts, for there is nothing perhaps so dramatic than the epic nature of someone's last months.

Cancer may attract those with a hero/saviour complex who seek to help, fix, save, rescue, carry someone in their last months/weeks of life because it makes them feel irresistibly significant (so usually is played out by those in the narcissistic/dramatic camps).

Here is one of the things that love is NOT.

"The savior complex is a psychological construct which makes a person feel the need to save other people. This person has a strong tendency to seek people who desperately need help and to assist them, often sacrificing their own needs for these people.

There are many sides to a savior complex and it has many roots. One of its fundamental roots, in my experience, consists in a limiting belief the savior person has that goes something like this:

“If I always help people in need, I will get their love and approval, and have a happy life.”

This is of course, a nice sounding fairytale.

Always putting other people’s needs first makes a savior not take care of their own needs. So while they may feel happy because they are helping others, at some level, they feel bitter and frustrated at the same time.

Here’s where things get worse: many people with a savior complex I’ve met, although they realize at some point that they have a savior complex and it is not worth it for them, they will not try to combat it.

They’re not masochistic; they have another belief that even if being a savior will not get them the recognition they want and will not make them happy, it is the noble thing to do. They believe they are somehow better then others because when they help people (albeit in such a disempowering way) all the time without getting anything back".

In reality, any EXCHANGE involves us each getting something back... anyone who imagines otherwise is not facing that.

photo by Gavin Halpin Dec 2016

JAN 17th 2017

I only ever wanted equality... admiration has never done it for me.  Among my Sista's who 'got it' was, my friend Jingru Li.  So look across at me, now and later, never up at me... find the sistership in me and you will see why admiration was blocking it.  

JAN 19th 2017

Currently writing an animation film called Ocean Deep based on my life's journey (for Paper Owl Films) ... just writing where different parts of my team are each entering the labyrinth of the 'House of Fun' .... very gothic.  Hope I can finish the script before I leave the body.

JAN 19th 2017

Whilst I'm feeling ok enough to paint I'm finishing off a handful of paintings I hadn't finished when I learned last Sept my breast cancer was metastatic. This is a painting I completed today called The Last Boat.

JAN 20th 2017

From what I've read of the studies, my present chemo drug Gemzar, used alone as a 2nd line treatment can be effective for 8-12 weeks... that's 2-3 months I wouldn't have had... can sometimes be more... who knows... but given I'd be ready to leave around 6-8 weeks after treatment stops working that would put my trajectory somewhere between May-June. Wild stuff. At least I have some statistical idea... this allows me to prioritise... important stuff.

JAN 20th 2017

Just saw the montage for the doco Nobody Nowhere filmed at the end of 2016... it blew me away... laughed, cried, was struck with the amazingness of the work by Gavin Halpin and Andrew Brenner associated with Paper Owl Films www.paperowlfilms.com ... When the project has found a broadcaster and attracted funding it will go from development into production and from there onto the screen. So proud of the work we did. I won't live to see it on the screen (it takes some time from development to production to screening) but so glad you all will.

At first the doco was going to be a doco animation but they had so much good material just as a doco that Andrew and I soon began chatting about an animated feature film - Ocean Deep - based on the collection of dreamscape paintings in a book I wrote called The Journey which metaphorically summed up my life's journey. 

Andrew became my muse and I began writing the script for it, very largely non-verbal, extremely metaphoric and wonderfully surreal, evoking some of the magic of Studio Gibli.  It gave me a magical place to go to as the effectiveness of chemo signaled a progressive end.  It gave me a challenge.  It gave me a land of dreams to leave behind for the world.  We both knew I might not live to finish it.  My aim was at least to write it through acts 1 and 2 and map out act 3 so Andrew could take up the spirit of it through act 3 and the editing process to see it to its magical end.

JAN 21st 2017

I completed this signed original painting yesterday, called Transition. It came from a recent dream... I climbed up on the railing of our back verandah and then leaped off... as I did I turned into a butterfly and flew away until I was too small to be seen. It was amazing and beautiful.

JAN 21st 2017

Chris and I went out to buy his suit for my memorial and a bunch of jeans he could get altered at the same time because though I gave him lessons in the sewing machine it does take plenty to master it at all its levels so he settled with learning how to become a patron of the alterations shop (more social connection anyway). But today we picked all his gear up and unpacking it I bawled my eyes out... how can I be here putting away his suit for my own memorial... and I took all the tags off and bawled more for who would remember to do this when I'd seen my Aspie man (like many an Aspie) forget to cut the tags off... then after becoming a snot version of Niagara, I burst out laughing... like... what!... is this seriously the worst thing that could happen to him... that he'd forget to cut his tags off when buying new clothes... so then it was tears, laughter, tears, laughter... and then glad for the emotional release which people pay counselors and amusement parks good money for.

JAN 22nd 2017

Such a wild fun day today with Chris who though not a bike rider dared it for the day - fab soldier - and Scott Mc Leod who slowed down for us with nothing but joy - saw 6 koalas and a dead snake on French Island, enjoyed the ferry and a funny bike ride and rests in the grass... yes, Scotty, hilariously pushing me with a hand on my back propelling my bike when I couldn't... that's what friends are for

JAN 23rd 2017

Finished this one today, its called Poignance. Chris wants to keep it so it's staying here.  Poignance was our word for feeling deep epic emotion when we decided that sadness was sometimes poignance and poignance is of course part of loving deeply, truly and with realness and all of one's being.

JAN 24th 2017

can't believe my neutrophils today.... not 0.3, 0.4, 0.6, 0.9... but a healthy 1.6!!! needless to say the nurses were gobsmacked and I got a full chemo... top of the class... sure, 2nd line chemo may not stay effective for more than 8-12 weeks but who knows...

JAN 25th 2017

I completed this signed original painting yesterday, called Cat Dreams. It derived from my transitioning of the cats to getting used to having Cat Dad (Chris) as their only cat parent... I hoped they might dream of me, perhaps imagining me on a daisy in the garden calling to them.

JAN 25th 2016

Friends and family in the last months of life

What are your rights as a person in the last months of your life... do you have a right to choose who enriches the precious days and months left and limit time with those who need to spend it for their own needs?

JAN 26th 2017

Gavin Halpin from Paper Owl Films and Andrew Brenner from Nondescript came out in Dec 2016 to film a documentary, Nobody Nowhere.  They stayed with us and it was a magical time.  In Jan they produced a montage relating to the film:

"We are developing a series of films that tell the amazing story of the Life Donna Williams aka 'Polly Samuel'. This short montage gives a mere glimpse into Polly's remarkable strength of character and deep understanding of humanity. Our ambition is to develop the Project(s), pitch to broadcasters/financiers and get them into production, so that Polly's message can be heard by a world wide audience. Please feel free to like, share and follow our facebook page for future updates. Thank you all! From the documentary Nobody Nowhere being made by Paper Owl Films"

https://www.facebook.com/PaperOwlFilms/videos/781395865348044/

JAN 27th 2017

This painting is called My Heart. To me it is about wishing someone well on their travels and the reminder that when feel 'I miss you' we can rephrase this as 'I love you' knowing that we continue to carry them with us in our heart.

JAN 31st 2017

There are many times in life we find ourselves in 'The Waiting Room'...the place between 'this side of the fence' and the other, unknown one. Living in one's last year is also one of these 'waiting rooms' of life, a time of transition, preparation, letting go. For me it has been a time filled with life but also coming to terms with moving from being a resident to temporary resident, to tourist knowing that 'bus' has just gone around the corner and will soon be back for me.  

FEB 1st 2017

Went to Cirque Du Soleil last night with Chris and saw Kooza (a Christmas present from him). It was wonderful, magical.

FEB 1st 2017

I painted "We All Come From The Stars".

This was a strong theme at my living wake at my birthday in October last year. Death is easier to understand when we realise we are all 'star stuff'... made of the same material that came from exploded stars millennia ago and it is a return to this 'dust', this star stuff that we return when no longer physically recognisable by the human body others find so relateable. For me, this became part of coming to terms with this time is transition, for me, for Chris and all closest to us.

photo by Gavin Halpin, Paper Owl Films 2017

FEB 3rd 2017

I have three bucket list projects... to see the recording of the last of my music (recorded most, Anthony Julian will soon record the last of it)... to finish the feature length animation I'm writing (I'm part way through act 2)... to finish off what remains of unfinished artwork and then pass on all my art materials knowing 'I'm done'. Then it doesn't matter if chemo has stopped working, for I will be ready. Chris and the cats are transitioning brilliantly, our closest friends 'get it' and are adjusting well, the time feels as 'right' as it may get should that bus beep its horn for me to leave the waiting room and board it.

How will your life continue down its own track once I've caught that bus? What lessons will you take forth into your own lives? Has it changed you to journey with someone in my position?

FEB 6th 2017

Went yesterday to the most amazing place near here... Yun Yang Temple in Narre Warren with Chris and life long pal Scott Mc Leod it was magical and had elements of many of my dreamscapes paintings. Taoism is not a religion but Taoist principles are part of Buddhism and many Buddhist principles have guided my life. Just as one can live by Christian principles and not be in-doctrine-ated, one can live by Buddhist principles and nor be in-doctrine-ated into the religion.

Some pray to Jesus as a sky daddy for me-me-me favors, some pray to Buddha the same way. Others look to the examples of such figures for how they guide their lives. Buddhists generally seek to find their own Buddha nature, their 'higher self' so to speak as a place of grounding, of balance, of harmony with and in the world and strive to trust to life, walking a middle path embracing the 'salt and the pepper' (rather than demonising and rejecting one or the other).

FEB 7th 2017

We learned my 2nd line chemo had failed.  I had turned a corner.  I was now no longer in 'tourist mode', I was in the waiting room.  

Hi All,

Sit down, pour a cup of tea....

The second chemo drug didn't work at all. So for the past 4 weeks the cancer has been growing and I have ascites (build up of fluid in the abdomen) which is making it again difficult to breathe, difficult for the stomach to empty and having pain (now having pain management).

Today they started me on a third chemo drug. It also has a 30% chance of doing something but the more drugs we try the more cancer adapts. It is how it is. In 3-4 weeks we'll know if this drug has done anything. If I'm in too much pain and discomfort they can offer me pain drugs and can drain the fluid in my abdomen. This may be as good as it gets from here. In 3-4 weeks if this third chemo drug is not working it will likely be the 'dying time', which means I'll be maintained by a pain management team and I'll be ready to leave my breathing machine off, choose a Saturday as my 'sleep day' and let go. This would probably be about 4-6 weeks after this latest drug is declared a non worker.... so around 8-10 weeks from now, around the 4th-11th April.

I know many of you will struggle with this news and want to come and visit. I'm sure you also know that the time I have now is very sacred and what matters to me is sense of home, time with Chris and the cats, time with those who have always and will continue to support Chris once I've left the body.

The rest of you, thank you for knowing me, loving me, carrying my spirit forth in your own lives. Be kind to yourselves, don't fear sadness for it means you have loved, and sadness is also poignance and epic, and to feel like so strongly can be a gift. Remember too that you will always have more than sadness in your pocket, allow it to be part of what you carry. And when you feel you miss me remember to put your arms around yourself and rephrase it as 'I love you' for you will be carrying me with you.

FEB 8th 2017

A friend said she didn't know what to say... I suggested

"wish me well with the next phase - pain management
the finish off of my to do's and a graceful and dignified goodbye to a body that did all it could
then go to the memorial (or make a personal alter to have your own for me), celebrate me and remember me for then you carry me with you".

we do need to talk openly about endings and death... we will all have one... we cannot push those dying into a closet and tape their mouths closed or stop them typing because we were never given the opportunity to learn how to think, feel or share in this phase of life the way we were with birthdays or births. if we can bring autism out of the closet, we can bring dying and death out too.

FEB 8th 2017

People asked for ways to honor me... I believe in self in others and others in self. People wanted to send flowers or cards, but I would like people to spend their money creating themselves a meditation space (which can take up very little space and be made from found and 2nd hand objects and things found in nature) to light a candle (even if its a battery candle) and pay homage for in doing so they also learn many things for themselves... to walk with their sadness, to find safety with poignance, to celebrate the lessons and gratitude, to find the balance and to build communication within their own world where they carry those who lost their bodies.

FEB 9th 2017

I was doing it tough and painting got me 'in the zone' but also helped with me capture my own dying process with beauty.  This original painting was done today and is called "In My End is My Beginning". I've been dealing with pain this week and pain management will soon become part of my last 1-2 months. But pain is also a gift, it allows me to look forward to setting my body free and helps those who love me also be more ready for me to do so. This painting is about the dialogue of such readiness between the character and the bird represents flight from the body.

FEB 11th 2017

Hi All, turned a corner... struggling with all the basics... pain, sleep, bowel, breathing... some of it will be this last chemo drug since Tues... some the progressive damage to GI tract, some ascites... this is the time of suffering and surrender which is a new learning curve (and something we will all face) but necessary to letting the body go... better pain meds next week... will try and finish the animated film script... around 35 more pages to finish the outline... then ready to go. Those who get it know this is not the time to cling, nor for false hope, nor to make it about them or see to place themselves front and centre... it is a time to wish me and Chris and those closest to us in our daily lives well in this part of our journey.

FEB 13th 2017. The day before they drained 4 litres out of my abdomen I made a video about ascites knowing others at the end of life with metastatic cancer may have it too and there was nothing which humanised it for lay people.  I didn't want people to feel alone in such frightening stuff and it helped to do something constructive with it.

 

 

FEB 14th 2017, 8am

How I feel about my man, and life... I know I'm in the corridor to death but in my heart its a time full of love... I'm so lucky, so many die alone... this is why I want to humanise death as part of life so we stop fearing, silencing, scripting and packaging away those who are dying all because we're taught that's normal, they are no longer 'viable', or because its easier and less impinging of the hearts and minds of those not living this tourist status, the waiting room, the corridor to death and the ultimate release that comes with it.

I spent these months introducing everyone to each other so they can share their loss and celebrate my beingness  together and how they carry this forward in their hearts where I live on and do not die. 

Marisol was a skype pal I met around 12 years ago.  We dagged out regularly on skype and she was there with me through my treatment for primary cancer in 2011 and the aftermath through 2012 and in the last few years we'd skype every few months or every month and eventually every week.  Daggy, real, present and engaged she came to join us on skype throughout this last journey on progressively a daily basis.  I introduced her to Chris and they clicked along their own Aspie lines and we became this trio meeting for skype breakfasts (we'd sit the laptop at the table), skype lunches and skype goodnights. 

It was such an important part of Chris transitioning.  He could see someone would still be present 'in the house' once I left the body, someone with a lot in common with me and with him who had shared our journey from the front row, laughed, cried and danced with us when we needed the 'normality' or to get grounded again or just grab what life was still here in our hands. 

When I could only lay down, Marisol laid down with me.  When I was '9 months pregnant' again with ascites, Marisol would don a big ruck sack to make herself similar and we'd dance.  We shared music and silence, movement and dancing, tears and laughter, cooking and distraction.  We introduced her at skype lunches to Scott and our pal Jeff, and she'd met Morghana and Anth and Trisha and Sandy, co-skyped with Bev and met the cats.  She was a member of the family.  

So here is my song of the day and dedicate it to all who love me and create a resonance in me of the same, a deep gratitude... and dedicate it also to my dad, Jackie Paper... who often thought he was Elvis and who died aged 59 when his bowel cancer spread to live and pancreas, he leads me too in this leg of the journey and I hear him in our last conversations down the phone line as we laughed and shared music and I played him piano and he cried at the beauty and sharing of my classical music...so hey dad, off to get drained of all the acscites fluid this morning... yay!

FEB 14th 2017, taken 10am

Chris came into radiology with me as they inserted a 6 inch needle into my abdominal cavity, making a hole, inserting a catheter with a tap and proceeded to drain off what because 4 litres of ascitic fluid allowing me to breath and walk and eat and pee again.

 

 

 

FEB 14th 2017, 6pm

Today at 10am they spent an hour and drained FOUR LITRES of ascitic (in my case due to cancer related fluid from my abdomen trapped in the peritoneum where it has leaked from organs)... yes FOUR LITRES in this little body that had suddenly built in 10 days and left me suddenly 9 months 'pregnant'...

said I had an immaculate conception and was delivering a water baby that was a Greek god called Ascites... wow, glad to be rid of that one! Yeah, it'll be back, resurrecting itself, but I can get drained again if I'm still happy to keep this body a while.

The pressure of this 4 litres ... on all internal organs including bowel... and on rib cage, muscles, digestion, breathing was dramatically improved. Awesome... what a great Valentine's day.... we will go out tonight... can still only do entree and easy food but ready to eat out. Sooooooo cool....

and my immunity was good and I got chemo today too... so chemo is still on the table and my markers (in spite of the severe fluid build up) were slightly improved... so this third line chemo may be working... will know the next two weeks.... if it is working... it will usually stabilise things and last around 4 weeks but has sometimes lasted longer ...

so dance with us to our happy dance.

FEB 14th 2017, 9pm

After 4 days not eating, trouble emptying my  stomach and my stomach squashed by 4 litres of ascitic fluid, I could now eat lunch so the breastless woman with a picc line in her arm, a bald head and a reduced but still obviously distended abdomen decided to buy a Valentine's dress and we could go to a Valentines dinner at our special place where we always went on special occasions and our dark nights of the soul.  We both dressed up, two foodies who had always shared cooking and dinners who hadn't been able to share a meal for over a month.

It was the awesome Valentine's we couldn't imagine we'd ever have.   Chris tweeted "Something we never thought we'd do again.  Valentines night dinner with Kim at Copperfields, Olinda. Thanks to all @ Ringwood East Private hospital!"  Kim made me food I could eat.  It was awesomely romantic.  

When we got home we danced.

FEB 18th 2017

great day... went blackberry picking with Chris and our pal Jeff, then met three lovely alpacas and Chris and I went to Cardinia Reservoir... wheelchair getting some use and great to be able to be part of such great things... walked when I could and these guys helped when I couldn't (struggles with breathing since trauma to respiratory muscles and ribs from ascites but its a work in progress). Important thing is to enjoy life whilst one has it.

FEB 20th 2017

ok, another drain tomorrow for ascites... not looking good, oncologist things 3rd line chemo hasn't worked. full verdict next Tuesday. depending on aggressiveness once chemo is no longer an option I'll be at the bus stop. Those busy with miracles, please respect my realism and all it gifts me and Chris. Those not in the front row, sort out your memorial space and commune with me there, those invited to support Chris at the memorial I'll meet you in your hearts. No regrets.

FEB 21st 2017

had another 4.5 litres of leaked protein fluid drained out of me today.... was then well enough to go to lunch and go bowling with pals, Tricia and her son Scott... may come back within a week but today was fab

FEB 22nd 2017

Great day yesterday finished with a finale of neuropathic pain throughout the abdomen and liver. Started moderate, a 6-7, by midnight it was severe, a 8-9 on the pain scale....increased my Gabapentin from 600mg to 900mg and drove it back to a 4-5 but by 3am unable to sleep. Called the cancer hospital... wonderful over the phone support. Upped the Gabapentin to 1200mg, took another 5mg Baclofen and slept wonderfully and pain free for 8hrs. This will now be my program from here to avoid all that. Stoned the next day until around 2pm... pain is my harsh mentor, it trains me to let go body and face there is no return from the hallway when looking at the bus stop... the hardest of transitions for Chris and I but last night with tears and unbearable pain it taught us well and we accepted the level of medication for pain and the privilege to have that (here outside the 3rd world). For this, I must thank this tormentor.

FEB 23rd 2017

on diagnosis of cancer being metastatic, moving into 'tourist' mode was challenging, then finding ourselves in 'the waiting room' when 2nd line chemo failed, then in the 'corridor' when 3rd line failed.... now facing the gate to the 'bus stop' as the body fails and reminds us why we are ready to 'let go' was full on. We're adjusting to that too.... its like an airport and all the 'ready to fly' thing... I'm ready. Thank you so much all for keeping me company... for giving 'the usual world' as I watched that world slip from me.  feel free to light a candle and sing it or just imagine me as that light, lighting your own journey of loss

FEB 24th 2017

on Monday they'll drain me again, on Tuesday I'll likely be given the choice to stay on chemo IF its slowing progression (ie not working but maybe still slowing progression) and I'd like a few more weeks rather than let liver tumors grow rampantly and aggressively and go in when unable to manage the symptoms and go to sleep in their palliative care beds.

FEB 25th 2017

To all the FBers supporting Chris and I this last five months, this is my lot now folks. Was in A&E hospital 5 hrs today getting 4.65 litres of leaked protein drained from my abdomen which was limited my basic functions. From here Chris will admin my FB page when he is ready for that.... so please visit the personal memorial spaces you make to commune with me... thanks so much for being part of the journey. It was so less scary having you all along for the ride. Warmly, Polly

Rhodedendron Gardens, Olinda, photo by Scott Mc Leod

FEB 27th 2017

Went in to have my picc line cleaned and bloodwork in the chemo ward but the writing was well and truly on the wall.  It was clear I was out of the game for chemo now.  The oncologist had already expressed his view that 3rd line chemo had now also failed me.  As I was getting bloodwork he visited me in the chemo ward about our appointment tomorrow where we were to understand the 'roadmap' up ahead.  I had got used to these fab array of wonderful nurses and human beings for 2 days a week for 5 months.  Chris helped me frame it as 'my job', now clearly I had 'graduated' to learning all a patient can in their time in chemo as a metastatic patient.  My job was 'over' and I was retiring to the task of doing my last walk down the 'corridor' to the 'bus'.  I had made friends with two other metsters, both of them funny, warm, wonderful and we were comrades there.  I left my goodbyes for them and my well wishes.  9,999 out of 10,000 metastatic patients will die from their metastases.  The 1 in 10,000 who doesn't is one of the lucky ones who responds so well to a chemo that they go NED (No Evidence of Disease) and stay there.  I was Triple Negative... no hormones to turn off, limited treatments, tough prognosis and started with extensive liver metastases and no hope of liver resection (only 1% of liver metsters ever qualify for resection).  So I was realistic from the start and that realism gave us great transitions which gave us great peace and no time wasting.  The staff were wonderful throughout... great staff but real, diverse, fab human beings.  The breast care nurse helped me come to terms with my acute life long phobia of being trapped in a bed away from home which has impacted my avoidance of hospital stays regardless of what has sometimes been a need for one.  She was awesome and helped Chris too to feel at home and familiar with the palliative beds and setting.  I decided to frame it as a 'Hospital Hotel' and it really helped me go from fear, into panic, into snot monster, into feeling I could do this and progressively that it was a safe place I could trust.  They those who needed to know are also well aware of my PTSD and background it came from and have protocols to keep vulnerable patients safe in this important time.  

FEB 28th 2017

no easy way to put it so here it is...

I have spent the last 4 weeks being drained of 4-4.5 litres a week of leaked protein from my abdominal cavity, due to liver failure caused by reemergence of the tumors.  A week ago I became cachetic (all muscle and fat suddenly depleting dramaticall due to cancer processes).  I did, however get 'fairy wings' (my shoulder blades look like fairy wings now)

I learned today that my 3rd line chemo failed just as the 2nd line one had and that there is 0 chance of further chemo having any effect, they removed my picc line (that delivers drugs... from here these will be subcutaneous), I've been told I have 8 weeks (probably around 4-6 with some quality but a lot of lost mobility and progressive fatigue) and have discussed the dying process from here.  Chris is coping brilliantly.  We will soon be visited by the home support team.  The palliative care ward respects my advanced care plan and it is likely I'll leave the body from there. 

We are only seeing people from our inner circle of support for now....Thank you all for your support and I know you will be there for Chris in his new life up ahead.

Among those in our inner circle of support was our great pal Marisol Vilamil who danced with us to Ghost Busters as Chris and I took the piss out of death being 'ghosts' and Marisol donned a blanket and danced with us on skype.  

We then went to a lake with ducks and ducklings, I waded in water with sand under my feet and tiny fish swimming around my legs.  I laid in the comfort of Chris' lap and enjoyed leaves with him.  We were at peace.

MARCH 20th 2017

Life has changed but it's still life, still rich, and warm and full of belonging.  My life does not stop in the dying time.  Nevertheless, it is that time and closely around me get this,  I hope once the essence of me leaves the body to live in on in the sacred space of the hearts of those I've loved and been loved by that there will be something other than just sympathy cards... cards that say, oh I'm so sorry... are we sorry?  I don't think so.  There are so many other things to say than merely reduce all the range of emotions to "you have my sympathy".  I think 'wow, what a ride' or 'life changing, eh?'... sympathy means 'I feel for you' but it also tends to tidily erase how much life we shared so fully in the last 6 months of my life including the 'dying time'.  Sympathy tends to reinforce the sense of loss... and there will be loss... but we have also all been enriched in the process, learned how strong and whole we truly are... and healthily celebrate the way that the love is not suddenly extinguished or 'lost', it also lives on.

MARCH 26th 2017

I was talking to the social worker at palliative care.  She was talking me and Chris through what 'the end' looks like, from sedation into 'slipping away'.  She assured Chris I would still be aware of his touch and finally his voice and that it was ok to hold my hand and speak to me.  But something in me rose up and I had to say 'stop right there'.  I do believe in that 'goodbye', but not in anything keeping me in the body, holding me back from leaving it or reminding me of the world of the living at that point.  When I've left the departure lounge, gone through the gate, become the plane and am ready for take off, cut the ropes.  

I told the social worker where this gut instinct came from and why I hadn't shared it with many.  Many have had 'near death experiences' and they feel ok to talk about them because the circumstances were 'tidy', 'understandable' to the social majority.  But I felt my circumstances were not.  I also feared that people with lives ahead of them might mistake what happened as 'attempted suicide' (it was not) and glorify this.  I can only stress that if it left me with one thing, the experience ultimately left me with the seeds of striving to seize life, however challenging, not throw it away.

I had been around 12-13 years old.  I lived in dysfunctional, criminal, substance abusing family that was often dangerous and even more often endangering.  Raging parties were usual. I had only gained functional speech between age 9-11 and was 'the loony in the attic' up in the isolation of the top of the house.  As such fight flight was the norm and terror of sleep came with that.  Homelessness was the only other option which I had already known and was intermittently still in and soon to be mostly in. 

I did not know at that time that I had an already impaired respiratory drive from early childhood which meant that I could go into extended apneas.  Under the wrong circumstances these could be worsened to the point my heart could risk stopping.  This condition was only medically diagnosed when it further failed progressively first by 2010 and then further again by 2012.  In other words, what happened to me, may never have happened to someone without this pre-existing medical condition.  

Within my extreme 'home' circumstances I found I could put myself to sleep inhaling a substance common in the house which was 100% pure alcohol.  I would usually get dizzy, cast this off and sleep, but one night I feel asleep with a saturated cloth of it over my nose and mouth.  I was not attempting suicide, not attempting to 'get high', not attempting to self harm, just to relax enough to dare to sleep.

I awoke on a saturated mattress, my heart in tachycardia (didn't know what this was until older), crashing migraine, sweating profusely and hallucinating big dark cracks coming out of the walls.  I fell back onto the mattress and felt my body like lead be pulled through the mattress.  Then I emerged into sunshine and warmth except all that had been me was just 'sparkles' rising like dust motes.  I felt immense belonging, peace and joy and that what had been me was dispersing into 'the everything'.  Then my body dragged me back to it. 

I came to, as sick as I'd been before this and survived the night but I was never able to forget the experience I'd had.  It was only as I became an adult that I wondered if I'd 'died', eventually heard of 'near death experiences', noted these as similar to my own but still told virtually no-one.  When I told the social worker she said my experience was very like that of so many she'd known who'd had 'near death experiences' and that I should not feel shame of that experience, I should honor it.

And so, 40 years on, I honor that little girl with so few choices, and that she survived and lived another 40 years and that that experience helps me now with feeling so at peace and 'familiar' with what it is to experience 'take off' when personhood and body separate fully and the ignition switch is on its way out.  

MARCH 26th 2017

Sick or Dying?  Person or Patient?