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 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 19th 2016

Went into radiology to have a PICC line inserted because Ehlers Danlos Syndrome III/IV means fragile collapsing veins, enough tries to traumatise, and too much parlaver for someone needing immediate chemo.

Guided by ultrasound and whilst awake, they entered a vein in my arm and ran the PICC line into my chest to a big artery to take the infused drugs straight to a big artery near my heart.  I was now 'Borg'.  

I went to board my 'flight' on CA1 - Cancer Airlines flight 1.  The 'flight attendants' were nice but I got no show bags - bummer - seems those are just for newbies with Primary Cancer... the wash bag full of goodies for those traumatised by the prospects of chemo changing their skin, nails, lips... but as someone metastatic I knew the drill.  They did offer me a banana LOL.  

Scotty joined me and Chris for my first day back into chemo after almost 5 years, and we made it fun and like time in a living room.  Love, love, love these beautiful gems in my life.

At home Chris and I snuggled and sang.  The whole concept was foreign and in our faces... it was everywhere... still there was such gratitude for all we had had, would still have and all I'd leave behind with him in the wonderful life I could foresee and celebrate that he'd go on to have.  Sure, I'd had a 'futurectomy' but I could still imagine his future, that of the cats, our friends, the garden, it was not the end of all I'd known.  Sure I'd lose that knowing, but they'd still carry it forth.  

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 20th 2016

Scotty came over to hang with me and Chris as family as I prep to launch once again into chemo, this time not to save my life, but merely a few more dances at the ball for Cinderella thanks to the wisdom and careful guidance of the fairy godfather, the oncologist and his magical life extending (but ultimately temporary) chemo tricks.

So there I was, leaned over the bath as Scotty and Chris took turns with Chris' shaver and off came my silky brown curls into the bathtub as they gave me a 'champagne shave' to return me to my Buddhist monk look with a completely bald head.  I would now embrace my new look and step forth as a bald Cinderella and for as long as chemo continued to push back or hold back the growth of my liver tumors I would go to board my weekly luxury flight on Chemo Airlines and take my seat among the other passengers in the chemo suite.

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 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

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 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 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 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 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

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 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 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 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

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 treatments 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

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 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 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

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 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 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 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 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/

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 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 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, 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 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 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

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.

[Chris, Polly's husband, here]

Polly's guess of the end of April wasn't far off the mark, on Thursday April 20th 2017 we were working in the garden laying some paving slabs for a little patio area and then retired inside. Polly had noticed some new symptoms recently and I went and did some research into what might be going on.  It turned out they were what you get when the blood backing up from the liver starts to travel down other blood vessels.

When I showed Polly what I found she decided it was time, and emailed the oncologist to cancel the follow mornings drain and arrange to go into the palliative ward.  That next morning we had a call saying it was all sorted out and we could come in to the ward when ready.  Phone calls to Scott & Morghana and a Skype call to Marisol meant everyone was in the loop.  Polly and I brought her Easter egg, raspberry lemonade and a CD player with CD's (oh, and a small bottle of sake, but don't tell anyone that) and once she was admitted and in her room and Scott & Morghana had arrived from their respective parts of the city we set about having a little party.  With Marisol on Skype we talked, sang, danced and generally made merry whilst the staff were wonderful (and didn't ask us to keep the noise down).

By later that afternoon she was starting to feel the pain and it was time for the oncologist to come and see her and arrange the morphine pump to keep her comfortable and sedatives to help her sleep.  Once that was all set up and the morphine pump was running she bade us all goodnight and asked us to leave, she really wanted to make that last transition on her own.  Saying goodnight to her that last time was hard, but we knew we had to do it. I told her I was so proud of her and loved her so much and we held each other one last time.

Her thought was that once she went to sleep without her breathing machine she'd go pretty quickly, but in the end she slept for a little more than 24 hours before gently slipping away on the Saturday evening.

Needless to say she is greatly missed, and I am so glad to have known her and she made me such a better person.  She had such an effect on the people she knew.

I will leave you with the speech I gave at her memorial which is on her blog.

Vale Polly, you changed the world for so many people.

xxxx