Time Passes, Time Passes

My Canadian colleague at GCC used to say this while we were waiting for something to happen. It was synonymous with "My life is disappearing" or "I am growing old while this is happening." A workstation was booting up slowly or someone was taking a bit too long to work something out. I think about being in a situation where things move so slowly that cobwebs have time to form because of your lack of mobility. Runinng through molasses. Swimming butterfly through treacle. Two and half months ago seems closer to the Mesolithic period than the present day. It is seems like a long time. Both my son and I agree on this.

I was listening to the radio all afternoon yesterday while I was furiously making pies and spanakopitas and someone was saying that these days we don't have time to be bored and we should make time to be like that. We always have some form of electronica to keep us from it. But boredom is apparently a way that we can put things aside, relax and calm. I think it would be nice to be bored for a while. A PHD in boredom might be on the agenda at your local Uni. Doctor of Boredom!

Aside from this my aunt has finally decided to call it quits with her battle against cancer that she has been keeping ahead of for the past five years or more. This takes more courage than any reward for bravery pinned on any tunic.

I got another call today from someone who was not present to my partners passing. I'm so sorry about missing them out. Its seems like such a hole in the net I thought I made for this.

Time passes, time passes.

Ashes Ceremony Speech

Before the last syllable of recorded time comes around again dear partner, here is yet another tale, to quote the bard, told by your loving idiot, full of sound and fury and as always signifying nothing. The tale begins with an intent and purpose that you were never were clear with me where you never thoughts lay in relation to belief. That lack of clarity could be defined as a mist and it is a mist which binds that menagerie together. You will always be a lady of the mist with regard to this. From mist your eyes get misty and mistier until you get mystic. Then you have a mystic mist made of auras, essences, zephyrs and spirit winds of what you believed. This is a mist which binds them all together. So in this fog bear with me while I stumble about for a little while with my respectful foghorn to say asta la vista at this time, on this day and clarify with a list, recipe and subsections of mystic essences make up your mystic things.
Mystic essence No 1 an essence bearing great tradition and long standing culture. It is the Hindi, Buddhist, Satyananda essence that you have carried for many years. It is a strong sweet essence much like Vanilla...and...not Almond. We have acknowledged this essence through yesterdays Havan and down at Roaring Beach, the Puja table and through the chanting at the celebration of your life way back on the 20th of March.
Mystic essence No 2 is another essence of great tradition, The Quaker meeting and meditation essence that we honored again at the celebration of your life through the silence and conversations that 200 of us shared together.
The following mystic essences involve the things that we shared together and intertwine, grow out or are seperate from the more traditional ones that we have celebrated with you but are equal in their import & which must be expressed and made measure of here today.
Mystic essence No 3 is the essence of your being. Your being here, now and then. The being of presence. Your being is a perfume that all who have known you will carry with them for the rest of their days. It is the way that you have been with them. The way you have shared and the way you are with them. They in turn will share your and their being together with others. This essence will always be with them. Mystic essence number 3 is an essence of being with each other.
The following subsection of mystic essences can best be described by us mist theologists as quasi-shinto-atheisitc.
Mystic essence No 4 is that there is the spirit of our surroundings which is in us all. The essence of physicality that you believed with me, that we become from particles that have made up many things. The ability for the universe to be recognised through your eyes has been completed and now you are once again giving your particles back to the universe. You soon may be part of this tree, this ridge, the birds and sea. For me this is akin to shinto. It was akin to the reason for buying this land. It is that it is and nothing less or more. It is an essence of the mist, a spirit wind on which to fly. Inevitably we are all at one with the universe and that is all and can ever be and ever is yeh baby.
Mystic essence No 5 is an essence that becomes real on a daily basis. That is the essence passed on to us through geneology. Your smile and laugh was most definitely a large part of this essence. You can see it passed on in Kelsey and your sister Jenny.
Essence number six is the last essence I have to share . It is the rememberence stone. Dragged up here by many dwarves. Great effort and thanks to all of you! It is a shrine to you and what you loved and where the last of you wanted to be. Something tangible that we know is here, where your wishes were, to celebrate that we have fulfilled them as you wanted. Something that will bring those essences of yours out of the myst for while or maybe two, maybe three, four, five or six more times.

Ashes Ceremony

The Ashes ceremony went very well and many have said that it was an invaluable experience. Thanks for that. The ashes are probably sitting up on the ridge now as it is unlikely that there has been sufficient wind to blow them off the Dias that we made for them.
Thanks once again to all who could make it and we were really blessed by the weather.

Rider Wait Allegory

A few people wanted access to the speech that I did at the celebration for my partners life. So here you go...

Just to introduce, clarify or confuse my bit you may be wondering why, on the Program for Celebration it says Rider Wait Allegory. To explain this, my partner and I threw a few great dinner parties over our many years together. On that very rare occasion, after a wee too many Cardonays, a poor unsuspecting guest might be very lucky to get one of my terrible tarot card readings. A friend, who is here today has been one of those poor, poor guests and will bemoaningly testify to this.
I have a Rider Waite Tarot Card pack. One of the cards in the pack is The Fool. It can symbolise lifes journey and that you never really know what is around the next corner but you march merrily on through it.
I first met my partner on a bicycle ride that another friend of mine who is here today, took me on back in 1985. Thanks fellow rider Soddy. Good things come to riders that wait. So now that's as clear as mud to you.......

Another Rider. Waite. Tarot card. Fools story. Starts. NOW! One of those huge, tassie, blue-day mornings, way back when, maybe 2nd or 3rd time you've done this. It was a nice cycle before. Would be nice to do it again! You charge the water bottle, make sure the tyres are hard, don the helmet, sunnies & lookin' pretty flash in those skin tight lycra shorts, knobbly knees blowin in the breeze, you take off down the streets. Air rushes past. Through the city, domain, govie house to the left and up to the bridge...

The future segue is Melbourne. You. The Rider. Waite. You share a house. You becomes we. We lives together in St Kildas. After a few years she becomes a well known potter. Going crazy with clay, she helps set up South Melbourne Gasworks Arts Centre. Always busy. The first few years of 26 good ones pass...
Back on that bridge, traffic whining, sun heats up the blacktop, you start peddling hard through those eastern sore suburbs...
We marry in Melbourne. Friends and family meet. The Mazda Capella blows its head gasket on the Geelong Freeway again! How the hell are we going to get to that lavish Queenscliffe honeymoon we spent our entire life savings on! The sky is falling!
A few minutes later, by some kind of divine intervention, our wedding photographer resident angel drives past and spies us on the verge. Shoulda put a few big ones on the ggs that day!..

Traffic dies, road winds up Grass Tree hill, down into low gear now, slowly climbing. Breath of Eucalypts. Stillness is broken by heartbeats thumping, drips of sweat. Black cockatoos cry and crows caw...
Another analogy. Another hill. Melbourne gets harder. She gets pregnant. A big mountain. Hobart looks like the summit. The rubber band snaps us back to Tassie and we move and buy 41 Louden St. Cheapest house in Hobart that year! Yeh and up near the tip!
Big & bigger from the beginning he is born and we. Become three...
Back on the hill, you've reached the summit. Gravity sucks. The wheels get the idea. Down, down, down towards Richmond you burn...
...She changes direction and does the day job. Supermum! You care for the lad, garden, make art and extend the house. Superdad. He starts school. Superboy. She stops the power towers in South Hobart and gets a masters degree to boot. We grow into our forties and share good times. I retrain and become a geek. We move to Arthur Street. Back in Sydney, her folks pass away. We buy a private forest reserve at Roaring Beach and start to make plans to be there until we are racing each other on our Zimmer frames. We move to the quiet of Roope street Newtown and spend nights listening to the dulcit tones of bogans burning up the Brooker.
The down hill run slows as you reach Malcolms Hut Road. Your in the flat of the Coal River Valley. You veer right and coast easily. Its an hour and half since you started.
It is the peek of day with the heat shimmering. The grass and sea breeze whisper their secrets, the journey cools...
She buys caravans and we spend a few years sharing weekends of paradise at Roaring beach.
We make more friends. She works for DPAC and we slowly design a house to build there. He grows taller than her - and then me. Rats! She turns fifty and we celebrate with many friends at a long table last supper down on the block...
You have now reached what is known as the Dulcot intersection. Your cup is half empty and the last hill is always the worst. You select the lowest gear and climb up and up steeply. It's a hard hill but you've shared such good times together. You are thinking about more you could share.
You see each other. See the smile and she gives you that look. That look! That look! Wah!
She waves as you pull off the road to the studio. The ride is over but the future and past come into being again.

Whooshing past

Last night a friend of ours said she felt my partner wooshing past her as she left us. Whoosh!
She had been waiting at the departure gate for way too long and had listened to way too much lounge music - stuck record on Cafe del Mar Siez or Diez. Then her flight was called...It wouldn't have been a cheap airline...

...It would have been Guru...da!

Goodbye my lovely woman

My partner passed away at 2:35 am this morning. She is at peace now. Like times before she did not give up until she left us. Until there was nothing more to give or get. Her heart was young and strong. Her breath held her. At the palliative care facility I had slept next to her knowing that this was the last night. Hearing her consistent breaths when I rose to the surface of my slumber now and then. Through all of her life she was consistent and strong. An equilibrium had been reached between her breath and her heart. By the position she had been laid in. Reached by a marked change in her breath on Saturday that seemed a lifetime away. Then around 2:00 pm they came to move her. The pattern was broken. The equilibrium was disturbed and she finally let go. Two weeks since she made her decision not to go on. Many days since she stopped raising an eyebrow or making a smile or frowning when in pain.

My son and I packed our things. I put a picture of her swami in her hand. We said our last goodbyes. Our last kisses to her forehead She was smiling in peace as I took my last glimpse of her from the door of her room. We left her with her many vases of flowers at the foot of her bed.

Goodbye sweetheart.

Serenity

Last night she opened her eyes around five and her breathing seemed to be very faint. I thought she was leaving us. Then she came back. I stepped out for a while three friends gave my partner a massage all together as the same time. I came back and there she was responded with smiles and what seemed great satisfaction - moving her body more than she had done for days over which time she has looked so serene. We move into today.

Transformation takes a long time

Back here I think we have given her friends the time to enter the and/or achieve the possibility of saying goodbyes. I think I have contacted most of those who have been with with her. It feels we are entering the stage where is time for goodbyes to be passed on rather than be made directly.

Last night one of her yoga friends gave us her guru's chant that was played / sung as he meditated when he passed into his next life. She talked about this as part of her way forward quiet a few times over the last 11 months. The chant makes you really sleepy and one of her buddies who gets an elephant stamp and gold stars for support all through this long year gave my son and I massages whilst listening to it. It is played permanently at her guru's ashram to this day. It took a while for us to find the repeat button so that she could have it playing all last night. We then left her in peace and went home to sleep. I wonder if it is still playing. Hope its not driving her crazy.

Her sister is flying back for the day. She needs more closure than being with for her to weeks ago. I understand. She sounded like she was falling to bits on the phone.

On Saturday I put up a frieze of photos in her room that I chose of her that have been take all through her life. I made sure they were the most beautiful I could find in our albums, had them duplicated which was hard at the store. I had to look at the bargains to stop my eyes leaking badly in public and be whipped off to a pysche ward somewhere! Her radiance is intense in all of them and it is hard for me to look at for more than a few moments. They remind me of the good times we have shared with each other for more than half our lives together.

The new day brings on the next round.

A special occasion

So many have come to see my partner over the last few days. Unfortunately some have missed out. She was asleep. Or out. Its the luck of the draw. You might like to try again. It becomes clear that the 'longer' you live the more the present seems to compress. The moments and memories become more succinct as you go through a few short hours called a day.

I pushed her around in the chair to a nearby cafe. She had a few sips of the soy decaf latte while the traffic roared around us. We sat outside - there were too many steps to go inside. Too unsafe to be worth the risk. She rolled her eyes at me as I helped far too much. It rained. Then was too sunny. It rained. Then was too sunny.

I went home and made some supper to take back to her. I walked the dog. My son, my partner and I had tea at the ward. We opened the wine that was a present from a friend who said must be kept for a very special occasion. A few more days, weeks or maybe a month. Definitely special occasion time.

Going into into palliative care

My partner has decided to go into palliative care. She has been chewing on this for the last month or so. Her quality of life has been slowly going down over the past few months and she has got to the stage that during that time her supervision and care requirements have been slowly and surely been getting higher and higher. When all is said and done continuing aspirations means further and worsening hardship. We had a meeting with the Palliative team this morning and she was offered and took a bed at the Whittle ward. It was a great release and relief for her to finally be able to come to this decision after many long months of exploring the "what ifs" associated with her condition. I'm sorry. It may come as a surprise to some of you as you may have enjoyed times with her recently and had not realised we have arrived at this platform.

Keep your fingers crossed

we will be going for another aspiration tomorrow. I am not sure how they want to play it and will have to be back to check out whether anything has been arranged. My partner wasn't as good as she was yesterday so it may take her quite a long time to fully recover. I am hoping this is the case. She did walk around the block yesterday. Yay! Something she has not done for a month and a half. Keep your fingers crossed that today is part of recovery and not something of a permanent issue.

Ex-Aspiration

Sorry but after today I keep thinking of the phrase "Never let a monkey to do a man's job". As I predicted yesterdays MRI showed a large residual amount of fluid that needed to be taken off. My partner had the usual 20 mls of fluid aspirated on Wednesday. Today the Neurosurgeon took off 40 mls. She is walking, dressing herself for the first time in 3 weeks. She is back in the land of the living. She no longer feels like she will start to pack it in and she is really pissed off at what she has had to suffer for months. The Neurosurgeon will be speaking to the Oncologist and I think we will finally have some closure to an episode of crap management. The cancer could hardly be seen. Oh for some over-arching case management in the medical system. How much do you have to go through to get something happening!

In the sick room, ten cents' worth of human understanding equals ten dollars' worth of medical science. ~Martin H. Fischer

Taking it a day at a time

Last week was largish. That's an understatement. The 5 days that my partner has between aspirations shows such a contrast in her mobility. We are waiting for a referral from the oncologist to a neuro surgeon to see if there is anything that can be done about reducing the amount of fluid that seems to be building up slowly but surely more and more each aspiration period. There has not been any correspondence in the mail that the referral has been made even though it must be 3 weeks since the oncologist had sent it through.

My partner went to stay with my cousin to have some time away the last 3 days before her next aspiration. A holiday away from the cabin fever of our house suggested by our family social worker.

On Wednesday night, in the time out from helping her, my son and I go to to have dinner with my mother. As she was a doctor she remembers a friend of hers who is a professor of neurosurgery in another country, another place. She pulls the stops out next day and emails him. He replies that he will look for answers but in the meantime my partner should have a MRI which may determine the cause of the csf build up and why it is not draining away naturally. We are wondering why my partner can't have an abdominal drain like hyrocephalus sufferers have to stop fluid build up. On thursday morning she talks to a local neurosurgeons secretary who suggests talking to the hospital neurosurgeons nurse.

On Thursday lunchtime I go to see the neurosurgeon nurse to see why the referral is taking so long. The nurse isn't there but one of her colleagues is and can't find the referral. The nurse says it usually takes nine weeks before you can get to see a neurosurgeon through the clinic. Hmmm, nice to know. I tell her I really need the referral and my partner may probably not live that long if she has to wait that time. Then the nurse that has been suggested I see walks in the room. She finds the referral in two secs. As it is an internal referral it wont take nine weeks and to come to the clinic after my partners aspiration on friday. My adrenalin stops rushing.

On Friday I wake at 5:20am. I decide to make some pastries for a nice lunch for my partner and a friend of ours that usually comes to see her in the morning. He has a broken leg and is in the 4th week or so of sitting round at home feeling pretty bored with it all. Like her the swelling won't stop, its just that its in his leg not in his head! He was going to try to organise transport for my partner to see him at home. I decide that I'll organise transport for her to go there and be picked up by my mum who will take her to the hospital for her aspiration. By 7:20am the pastries are cooked, the transport is organised. By 7:45 I'm off to work. I wonder if I should be seeing a psychiatrist. Naah!

I catch up with my partner like I always do at oncology outpatients. The nurse who set up for the last aspiration is there. Five days ago she told my partner that she should accept that there is not much that can be done further and that she should consider her current treatment as now being palliative. "We are here to make you more comfortable before the...". She really pissed me off. It was like there there never mind just give up and die. I had spent 15 minutes explaining to this "nurse" my partners situation and finally got her to see if the referral had been made between the oncologist and the neurosurgeon. She said she would follow it up on Thursday. She hadn't bothered or had forgotten. Lucky I went and saw the neuro nurse I thought.

The registrar who usually does the aspiration was called away to an emergency. He was going to get someone else to perform it. We waited until 15 minutes before the neuro appointment. Then told the oncology nurse we had to go to that. We went to the neuro clinic to wait for the appointment. After 30 mins waiting I decided to go back and make sure the oncology doctor was there to do the aspiration. I was afraid that he would go home. I got there and the same oncology nurse said he might be there when we got back. I said its not "might" its " he will". The nurse at the computer behind her smirked.

It felt very much like the last time that we would spend waiting trussed up like bee larvae in vintage plastic rows of seventies airport chairs at that hospital. I think those chairs where passed on from when Tullamarine first opened. Adrian off the collecters would like them.

Cobwebs were being carefully woven around our armpits as we spent a wee time to see the neuro surgeon. I asked the nurse how much more time before we would see the neuro surgeon, we've got an aspiration to have back at oncology. She smiled, searched for my partners file in the pile, put it on top and said, "You're next".

The neurosurgeon took his time and answered all our questions. He ordered an MRI and scratched "urgent" on it. Urgent eh its the weekend. "It will be next tuesday at the earliest. I will see you next Friday." He explained that an abdominal drain would get clogged up from the protein that the remaining cancer cells were producing. He agreed there may be some options that there was a blockage in the natural csf drainage system from her brain into the ventricals...how it usually drains. He said they did not want to take out any further brain matter as it would cause serious impairment. That was about all that could be done. He would look at the MRI, see if there was a workaround. If not, the only other choice was to see if they should be taking more fluid off and there has been a residual buildup. We wheel my partner back to oncology in her wheelchair.

From the moment she has the CSF drained it is like a new beginning. A flower opening up in slow-mo. From favouring a wheelchair, feeling comes back to her right side, her speech improves and things are near to as normal as they can be for a few days. Life is worth being here for. Then things start to slip back. She loses mobility and by the 4th day she is barely able to walk her mobility is ever so slightly less that the last aspiration cycle. Not with as much mobility as the same time five days before. We wait for next week. Probably the last week that the possibility of interventionary treatment may help.

That night for a long time tears form in our eyes when we look at each other. I tell my son how it is.

1st Scan 1 Month Post Chemo

We have waited for the past week in anticipation of a result from this. It has been good news. The CSF has stabilised and the node of tumour that was left has shrunk even further so my partner is taking a further 2 months off without chemo with another review at the end of that time. Also being referred back to neurosurgeon for possibility of shunt being made internal to drain to the abdomen to stop the 5 day requirement of CSF aspiration. This would mean my partner would not have to be chained to the hospital on a less than weekly basis
Celebrated with Sushi platter!