Three Weeks In, Four to go...

Woe betide me ...

I feel ill, so ill, so very very ill ...
What shall I do next?
Swish brine, swish brine, swash Difflam,
Take a pill, anti-nausea, anti-nausea pill, pill.
Try and eat, try and eat, try and eat something ...
Maybe a piece of battered fish. Hmm. That's a big decision that requires much planning.

The child wants to join Moshi Monsters on the computer.
She only talks to me when she wants something of mine.

I feel ill, so ill, so very very ill.

I sucked on a Wildberry slushy that was way too bitter,
the chocolate thick shake nearly sucked my mouth out and  tasted like chalk.

Eating without taste buds is a heinous crime. And a gross over-use of time.

I am disappointing my child. I am not conforming to her will.
She has the "Christmas 2011 morning, after ripping open a dozen presents, long face. The i-pad didn't appear then and I'm not giving her what she wants now. At least I am in control of my temper. Christmas kinda took me by surprise.

I'd never seen such ingratitude in the child. It was astonishingly ugly. I rose to the challenge, throwing her out of her room where she had lain buried with her old DVD player and new "Modern Family" discs. For hours. Fortunately, Cyclone Grant complied allowing her and Michael to  head off on loooong corrective bike ride. I tucked into "Mao's Last Dancer" which I thoroughly enjoyed. It made my Christmas. I am sorry I missed calls from two of my brothers, Chris in the morning and Nick in the afternoon. But I had no voice and nothing to share. Amy had left me speechless. The phone, too, was dead. . The messages were very welcome and well received. Hopefully I will catch up with them anon when I am feeling  brighter.

Maybe I should've seen Amy's moods coming but she's nine, always such a placid, easy child. Now she's happy again because I've given her the soft drink which tastes like acid to me. As pleased as punch you could say.

Not quite ready for raging hormones and sullenness. A friend, today, reckoned she had chubbed out in the last month.

"Yes, she is starting to fill out. It's all those Christmas chocolates, ice-cream and custards I've been eating of late." And she's still forcing herself into a pair of micro denim shorts too small for her.

The past week has been a blur of nausea and tablets mainly, with a considerable dose of pain thrown in. I have been getting slack at everything, barely able to complete the minimum of my regime. I had moments of pure revolt when I've thought I can't stand this any more and I just want to loll here on my bed and  die... Every day brings a new script for this, that or the other. The pharmacist at RDH should know me well by now with my mesh patterned face and aqueas cream up a nostril, post radiation treatment appearance. Oncology anti-nausea, radiation anti-nausea, morphine, soluble Panadol - generic brand is a $1 cheaper and I run out every two days.

It's been unbearably hot. I slather on Sorbolene in the middle of the night, post storm if I'm lucky. So far my skin is holding up. I've had compliments all round, despite the increasing number of isolated lumps. They are miniscule, probably feel much bigger to my touch than anyone else's eye.

Lee, my key radiographer, the popiscle man, as I think  of him, who would disappear into THIN air if he turned sideways, spent particular time admiring my neck on Friday.

So it is New Year almost. Time to do something about that I suppose. I have removed most of my hair. So now I look like a silver-hulled coconut. Most of my dark hair and curls have fallen away with the clip revealing a very grey-haired person. Michael says he likes the silver. Amy had trouble recognizing me. It is a bit shocking at first. So be it. Beauty is not hair deep or skin deep. I must trummel the inner depths of my being to find the finer me. She has been under pressure this past week. And definitely inglorious. Thank God my family love me. Thank God I made it to a 12-step meeting this morning to have my perceptions re-aligned and know that there is still much goodness in the world. It is indeed great to be alive.

And thank God for movies! I have watched at least one, if not three, every day since Christmas and it is a wonderful space to be in. "Meet Joe Black" - yummy Brad Pitt, Anthony Hopkins, humorous expose on impending Death; "Failure to Launch" - Sarah Jessica Parker - light and funny; "Yes Man" -  Jim Carrey, Rhys Darby, entertaining, "Anger Management" Jack Nicholson, delightful and a number of Gerard Depardieu flix recorded from SBS. So now, to assess the weather and decide how best to bring in the New Year. 2012!
The Last Sunset over Darwin for 2011 

10 days in which I died and got up again

So I've survived the internal torching and come out the other side to tell the story. Actually, feel quite cocky at the moment. Could live to regret that. Arrived home minus handbag and all fired up at child, at life, at God knows what. A tad too much sausage roll sans tomato sauce. Vinegar makes the roof of my mouth jump and tastes totally metallic. Yuck ... Energy misfiring. Eaten more today than I did in the entire of last week. The supermarket was sooo inviting! Three days to go to Christmas!!!

It has been 10 days of food issues. Major and None. Since last I wrote light years have passed. Yes, I've been into the blackened pit and lain, spread-eagled unable to move from side to side or lift my cranium. Sleep was respite. I lay 20 hours a day. From Friday evening, post Christmas party unplanned fade-out at 7pm, I wallowed from bed, to bucket, to toilet, to shower and back. Modus operandi, the flop! Crawled back, clutching my big yellow bucket as a spittoon. Never leaving my side. Dreadful oozing black substances dripping, causing consternation. Is it bile? What is that stuff? Rank stench. More tests for possible infection, menopause... Don't talk to me about constipation please! Loving husband administering pills for pain, nausea, hiccoughing, reflux, heartburn and mood stabilisation. Round and round and round the carousel careened.  He proffered powerful sustaining potions of powered protein drinks.

 "Line the stomach walls. Keep the pills down. Aah!!"

Thank God Sid wrote out a script for some decent hard-working anti-nausea drugs that kicked in yesterday, after I was told to double the dose. So pleased was I for managing to scoff three tiny chocolate bars on the way to radio therapy yesterday. In my usual over-exuberance I think two would have sufficed. Yet, it was a far cry from tiny slurps of vanilla custard, ice-coffee making me gag, ham that tastes of old socks,  or even the questionable two fruit. The juice machine has also lain idle with a kilo of blackened carrots going to compost. I plan to rectify that situation tomorrow. Hopefully the pears will comply.

Post Chemo, 10 days ago, I enjoyed a short-lived honeymoon. I remember thinking when the lunchtime sandwiches had come around the day before how few recliner chair recipients were tucking into the free meal. By Wednesday, after my first round of anti-nausea pills had ceased I joined the rank and file of the ne'do-eats. Thursday, with no more steroids on board I was all at sea. And it was rough.

My sessions under the white mesh Darth Vader contraption have been bearable and infinitely better if I can muster a relaxed starting position. Deep abdominal breathing, the Serenity Prayer and some decent songs later and the operators are wrenching it off again.

"Another One Bites the Dust" 10 down and 25 to go! Hooray!! So far I've noticed a roughness in the skin on my cheekbones. One glorious white-head on the side of my neck, which Michael had to pop this morning and wickedly applied some drying eucalyptus oil, has now developed in a spotty outcrop loving placed over my larynx.

Fantastic news today. Only one or maybe 2 more sessions of chemo to go  and three weeks apart not fortnightly after all. So my next doomsday is set for January 3 and there may just be no follow up required after that pending my radio therapy sessions and whether they've ended or something. More to be revealed when the gorgeous Meena returns from wherever she's gone.

Let The Chemo Begin!

Started Monday, December 12, 2011: ~11.29am

I don't do mornings. Never have. Today was always going to be a rush. And with my Chemotherapy brought forward an hour to start at 8am today, majorly tricky. Well! Up at 7 o'clock charging around. Readying child for school drop off, doffing pills,potions, swishing, swashing, brushing, the time was gone in no time.

Thinness, scragginess, stylish oriental caps, grizzly faces, and an over-riding cheerfulness greeted Michael and I in the Alan Walker Oncology Unit this morning.


 "You must be Gillian."
 Yes.
 "That was a good guess, come this way."
 "My mum's name is Jill with a J.
I haven't cracked a smile yet. It's barely 8am.

 "You seem to have lost quite a few kilos. Is the Pink Lady helping? Milk is really important. Make a milkshake with Milo or ice-cream"  ... hmmm yummm, I'm eaves-dropping on the chat just out of eye-shot on my left.


"Your white platelets .... are too low. Sorry about the (three hour) drive. You'll have to go home again and come back next week." Older couple opposite, look tired and bleak at the news. I feel sorry for them. What will be my plight over the next seven weeks...? 

I seem to be having an easy session. Other than the needle for all the drips, which killed my right hand going in. My fault. Not awake, no breakfast, one cup of tea, one glass of juice, inadequate supply of blood flow. My veins are not junky material.

So many staff away on holidays. It is my prep nurse's first day on the job. I'm already nervous without that. I try using the 12-step program. Be nice. Lachlan, my No. 1 Florence Nightingale, is cruising Sydney Harbour on New Year's Eve. When will he be back to take charge? Abandonment fears surface, let them go. I am in good hands.

I set aside the Sudoko board game to open my black plastic best buddy. Catch up on emails and notes from precious well wishers. I visualise the scent of a lovely English rose candle lit in my health. Deepening our friendship, bringing us together in peace, ease and joy.

I am presently tubed into the chemo toxins happily tapping away. Saline, steroids, and popping anti-nausea tabs all at once. The nurses wear duck-bill masks, translucent blue plastic aprons, rich lavender rubber gloves and stand well back when administering the chemo. Reassuring... They look hilarious.

Michael has chooved off after addressing the nurse's questions on my behalf this morning.


 "Any tightness of  the chest? Tiredness?". 

"No, of course not, I can't keep up with her," he volunteers.

"Well actually my chest is a bit restrained. Has been for several months now... And I get a bit huffy puffy on the third flight of stairs."

I send him off to make a cup of tea, he's good at that. Now he's having his head clipped by the barber. Can't wait for lunch. It is 11.57am. The air-con makes me starving. At least my mouth is ok today. 

Made a "last supper" yesterday. Rack of Loin Pork roast served at 4pm with a mountain of roast vegies courtesy of acting chef Michael. Breakfast, Lunch and Dinner rolled into one as another day went astray. Too long at church, dallying at the market, gathering mangoes, and an over-ripe paw paw for the new life-saving device, the juicer. To be elaborated upon.

Day gone before you know it. Amy made a gingerbread house and decorated it with loads of lollies with a girlfriend yesterday. Delightful Christmas project you may think. Wrong! I arranged a friend to come over and supervise while I packed for the oncology unit but single child threw a wobbly when her friend turned up with younger brother in tow. Three's too many ... "Not fair, they're taking over my house", etc It was all too much. I evacuated across the road. 

What happened to the joy of sharing? Is it just the selfish generation? With five brothers, I was lucky to receive one lolly let alone have a whole gingerbread house to myself. Amy "thought about the gingerbread house all last night," now deposited in the North Pole of our flat - The Freezer. She said she would share a side of the house each with her friend and the little brother could have a door! Lucky boy.

Mum, Dad, a visitor, might like a taste?  It's these matters I found exasperating and stressful!

Still I managed about half an hour lying on a bench in the full throttle of the sea breeze, deep breathing and trying to let all things go. Praying the Serenity Prayer and Meditating.

My fresh juice today was exquisite; dreamy, creamy paw paw and carrot juice.

The juicer is a miracle machine.  Can't recommend it highly enough. First talked about on Friday a week ago. Bought this Friday. Just happened to be sitting there for us at Crazy Clark's, $50, and still performing excellently four days later.  A year warranty and it has already changed my life. A sack of carrots, a whack of celery, pears, apples, two fruit, paw paw, watermelon, whatever we can find to stick through it basically. Delicious! Instant health and feeling of well-being. Still finding ways to improve the outcome. Paw paw bit extravagant - insufficient juice extracted. Must buy GINGER, in all its many forms, fresh, tea, chocolate, etc... and beetroot.

So that is more than enough for me today. Unable to sleep at nearly 1am on Tuesday, December 13, 2011. Rather stuffed myself tonight on roast vegies, Brie, custard creams (very ordinary and totally irresistible at the same time). Took a whole 0.5 Clonazepam at 11pm. My Circadians are pretty stuffed. The Full Moon last Thursday was belligerent. I am tired now and want to finish.


Suffice to say, Lachlan says I skied through the first of four sessions of chemo. The staff are very positive for me. Though he did mention he saw me on the slopes of Perisher. I thought that was an unfortunate choice of ski resort. Michael who had returned for this conversation with "Multi-grain Pringles in sour cream and a noggin shaved to the quickening, reckoned I was going to be Fukishimoed in the radiation section shortly. We were bandying around snowfields I think.


Frankly, all went well, though the radiotherapy mask is hellish and gives me a good 15 minutes of strangulation. Amy was 9-year-oldly underwhelmed by it when I produced the torture tool for her. She was intrigued by the pock marks it leaves however.

Thank you ALL for all the wonderful supportive texts and well-wishes today. They mean an enormous deal to me. Please keep them coming, to Michael's phone, or this blog, or email.   xxxxxxxxxooooooo

Sianara, over and out. Loads of love, Gill

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I'm Going Mad, No I'm Not

OPPRESSION with no silver lining

Friday, December 9, 2011: 0050

Bed is insufferabe, stifling. I can't sleep. I'm more wound up by the minute. The cat's gone troppo, chasing invisible prey, scuttling fine glasses on the kitchen bench. I need to establish a Drug Journal now. I have succombed to Clonazepam,  five minutes ago. The magic hammer pill should knock me out in half an hour flat giving me at least seven hours quality sleep. It will also return some time tonight to bomb me out for a longer period, such I experienced, last time, many moons ago. Tension is mounting. Three sleeps to Start of Treatment Day. Will it work? How will I survive the side-effect rigours? How much more pain will I need to endure. "Pain is inevitable, sufferng is not ..."  I feel like razoring the top of my mouth. I have a massive tooth ache in the right lower back region. Michael says it's phantom. PHANTOM, well he can have it. It hurts real to me. I think I've taken my full quota of Panamax till breakfast time. The idea of taking more fills me with queaze.

Our traditional tree, the Poinsiana, full bloom in November.
Twenty-six anniversaries of  being there for us and for all

If I can't sleep, my sensitivity sky-rockets. Pain is heightened. Anger is close, Dangerous. Speaking with force, treacherous. Needs to be nipped. Calm, serenity, breathing easily is not so easy.

Need to start scheduled relaxation and meditation. It's not like I haven't got the material. I made my own  CD years ago when I started teaching Speech & Drama. Teacher guide thyself...

I can be petulant at this hour. Mighty wilful. At least all I am doing so far is typing. Fairly harmless. Waiting for the drug to swoon in, take over control, become my Higher Power.

I have started mentally packing for Sunday night. THE TRIP to S of  T. (Start of Treatment: SofT, I like that.) Softly, softly, one day at a time. Or in today's case one hour at a time.

Sudoko game, (new); book club book, "The Happy Refugee", another book in case I get bored, portable DVD player, "Indochine", fabulous flick I enjoyed at a film festival in Hanoi last year when celebrating my 50th. The "Twilight" series; haven't watched them yet if Indochine stirs too many emotions. Toiletries: Brine rinse, mousse, Sorbolene, pink lady, cardigan, scarf, hat to cover up from the sun after radio therapy, edible food as the Oncology unit doesn't run to much, i-pod, headphones, Laptop ... O M G should just move in there! I'll be there about seven hours.

Monday morning, this is the drum:
1. Wake, stretch, rise                                                                      (2 min)
2. Rinse, take Thyroxine, Panamax                                                  (3 min)
3. Slurp from the Pink Glass Water Bottle                                        (2 min)
4. Teaspoon honey mixed with a teaspoon of Tumeric                      (2 min)
5. Slurp water                                                                                  (2 min)
6. Make de-caf Tea                                                                          (1 min)
7. Write morning pages, Connect with God, pray, off-load, affirm     (20 min)
8. Drink Tea                                                                                    (1 min)
9. Swallow 10mls Pink Lady if necessary                                          (2 min)
10, Liquid Breakfast                                                                         (5 min)         
11. Rinse                                                                                          (2 min)
12. Slurp Lithium, Sodium Valporate, Celery Seed and Mega B         (1 min)
13. Brush teeth                                                                                  (2 min)
14. Mousse teeth                                                                              (1 min)
 15. Shower                                                                                     (5 min)
16. Apply Sorbolene                                                                         (2 min)
17. Pop the pop sticks in on left side to extend the gap                        (6 min)
18. Dress with wide-brimmed hat for aftermath of radiation                 (5 min)
19. Ask Michael to carry my pack and drive me to the Alan Walker Oncology Unit  (15 min) for 9am appointment!!!!
How long is all that going to take? About an hour and 20 minutes. Set the alarms for 7.40am - same time Amy heads off for school. Not too bad timing.
May have to print that one out....
And Now, off to Ebay...  want to check on a small collection of cute clothes for the birthday girl. A whopper addiction that monopolised me fully last week resulting in a rash purchase of four pairs of funky denim shorts from the US on a dear friend's Paypal. I am unable to spend money on credit, stuff up big time with Paypal, long unpleasant headache. But I found another shorts delight in Oz and scored them too... Enough for 3 years just about. So to the next site. Adieu

Home Alone and Itching to Say Anything

Thursday, December 8, 2011: 11.56

Well it has been a crap week. The second half, at least. Decided to dig myself out of a ditch this morning. Enough is enough. Wallowing time is OVER. Michael's thoughtful tumbler of iced coffee (sorry, tepid) helped as well. He needed rent money, ergo he needed me up, dressed and out the door to get it. He talked about securing enough rent from me for the next however many months should I be incapacitated. With his financial skills I was in the shower, swishing, swashing, slurping, guzzling pills, brushing and mousse-ing teeth, sooner than I could swallow my drink. While dressing, for the supermarket onslaught, I added on Ten Pin Bowling, (to re-shape Amy's Party plan as her four BFFs from school are away for January 9 - the usual Darwin evacuation). Chemist and library were thrown in for good measure, got to keep well-stocked in Panamax. Also on the hunt for red lipstick. Can't think why other than it's Christmas. And a book I've devoured recently, "The Elegant Art of Falling Apart" by chemochic blogger, Jessica Jones. Geminis never do Anything singly.

So, a massive attack of chores accomplished this morning, probably not the best way to come out of a bed-bound week. For the past four years I have been blessed with a massive migraine prior to every period and mid-cycle (courtesy of Peri or pre-menopause, which I suspect is fouler than the full blown older sister). This week's migraine went from Saturday afternoon till Tuesday evening with a couple of respites here and there. According to literature thrust my way recently, chemo or radiation or both bring on menopause. Hallelujah! Praise the Lord. A Fringe Benefit. I hope.

Part of me feels I am to blame for bringing on the migraine. There are things I could have handled better. Rushing around a supermarket Saturday lunchtime hurling ingredients for a trifle and an afternoon tea party into the trolley. Flying home to startle the child into the kitchen - all in the cause of setting a jelly by 4pm. It could've been handled better. Whipping the cream to butter was interesting too. Haven't done that for a long time. When the tea party was deferred I took my sore head to bed.

I dragged myself to church on Sunday to collect the child who had enjoyed a sleepover and was sehr tired. Collected the tea party friend visiting from NSW who was full of good cheer. Kept it together long enough to hear loads of  news, tips and advice before collapsing back into bed again.

Thank God the Panamax is still working for I've been taking it round the clock. Popped another couple to ride me through Carols By Candlelight, Sunday evening. Thought I would spew before dark but for the glorious, green bowl of grass, the Darwin Ampitheatre and the rainbow lorikeets soaring overhead, their breasts fluorescent orange in the sunset. The wonderful brass band and Scottish pipers, the huge crowds decked out in green and red and silly headgear. The sea of red and white flickering candles as the old favourites, "Away in a Manger", "Jingle Bell Rock", "O Come All Ye Faithful" were pumped out. As our family-friendly tribe cracked nuts, Brazil, hazel, walnut, the traditional way. Now, I know why that Christmas ballet is called, "The Nutcracker". Bit slow, but then my family always had our nuts roasted or coated in chocolate...

It was a charming evening, capped off with captivating firecrackers, massive, beautiful, loud and splendiferous. Child and I got separated from Father and nut supplier friend at the end but after a short wait at the car and some firey gesticulations, "All's Well that Ends Well".

Monday was a recovery day, to wallow, awaiting the yanking of two wisdom teeth on Tuesday. Tuesday was  the devil warmed up and served cold day. If I never see a dentist ever again it will be a day too soon. Next appointment, December 20! Oh, the nurse and dentist were polite and kind, as far as that goes, while injecting a metre long needle of whatever into my gum while I can't open my mouth a fraction without tearing wincing in agony.

Thank God that's over! I may have slipped a few extra Panamax into the mix yesterday. All I did was mope and take pills. There was much gushing of blood, and my period joined in. A meeting in the morning, with a cheery chap from Perth, saved me from an hour of self-pity.

I indulged my lack of desire or inability to move or live Monday, Tuesday and Wednesday with the whole fourth series of "Big Love". Enthralling. Lifted me from my world of pain though their Mormon drama can be a bit full on at times. I was relieved when the third disc played out the final episode.

I thought I was going to die last night. About 9pm I was sure I would vomit from a Panamax overdose. My blood pressure dropped to a dizzying low and I was porcelain pale. My head still throbbed and there was massive toothache in both sides of my mouth, though the right lower where the stitches were was far worse. I contemplated all sorts of dire ends as I stretched out in the gloom in bed, I was definitely going to Accident & Emergency. Funnily enough, breath, prayer and meditation  got me through the night. I did not want to surface this morning. Amy had already begged Daddy to escort her to school on her bike as she was afraid of being abducted. She's been watching too much news... Michael says she's paranoid. "We'll be taking her to Tamarind (local mental health centre) next". Well we know where she gets that from.

At 7.40am, I was content to pull the pillow closer and hug my stuffed Emperor Penguin tight as I wished Amy a lovely day at school. It was not until Michael returned, mowed the lawn and made me drink tepid coffee, that I considered getting up may be possible.

The highlight of this mainly lost week was Friday when I was bathed in the fabulousness of friendships. Unfortunately, like most women, I must have talked four legs off a donkey that day. Such a pleasant break to be with witty, wise women and free of medicos. However, I outpaced myself, leaving my throat hoarse, sore, tired and ripe for the four-day migraine that ensued.

A notable feature this week has been how many dear well wishers have recommended extra treatments for my cancer.
One I managed to take on board today is:
A teaspoon of organic honey mixed with a teaspoon of Tumeric, morning and night. Yum! A little spicy. If you like your honey curried; an acquired taste.

Give up sugar as cancer thrives on it: Bit Tricky ... swap to Dextrose instead. Hmm

Lymphatic Massage - Waiting to receive notes ... and find out more

Bowen Therapy - maybe to help with the Trismus (lockjaw) - would definitely like to research this one more

A stint at the Ian Gawler Retreat in the Yarra Valley - for Meditation, Relaxation, eating organically to fight off cancer, etc and re-aligning my life: Highly Appealing!

12.43

Hot and Restless Under a Lightning Sky

Thursday, December 1, 2011: 11:26pm

From my third-storey loft, the breeze in the palms is rushing furiously. The storm, so promised, has arrived, perhaps, as I sit down with my black plastic friend, the laptop. Driven from bed again...

Another addiction to add to the infinite list. Blogging!

Writing has been a favourite escape as early as I can recall but many substitutes have pushed it aside over the years. Fags (ciggies), booze, relationships, with friends and partners, food, Heaven Forbid, exercise ... (all of them I have let go, well, not food, but that is being taken away now too .... darn and drat)

The German naked ghost, husband Michael, has emerged from our sanctuary bedroom to take in cool lounge room air. At last. Where is the rain?

Coming?

Why am I awake at this ridiculous hour rambling when I should, could, ought, am supposed to be asleep, according to last week's shrink, who said I have stayed so well for years because, "You keep your circadian rhythms." A way of saying I go to bed at 10.43pm every night.

I am also obsessed with jig-saw puzzles, TV programmes, Sudoko, crosswords, knitting, watching ants crawl up a wall, (sometimes two at a time, not ants, diversions).  Anything that allows my mind to be distracted from reality.

Last night was difficult, too, to stay in bed, though I fought it, meditated and refrained. I dearly wanted to rise and lift the black lid, push the power buttons on, had anyone read my blog??? Yesterday, I was excited. My brother Chris had rung from Brisbane, something that only happens at Christmas and possibly my birthday in June. This time he was curious about my health ...

Cravings... Thunderings. Pearl Cat is also excited on the window ledge studying the weather. It has been a torrid-hot evening and day.

Christmas is nigh. "What shall I send for Amy?", Chris leaves a message on a phone I rarely answer in time or decidedly don't. Voice mail and texts are invaluable. A fantastic innovation. Besides mobile reception by the sea is woeful.

Pouring rain has started, a loud, luscious, tropical downpour, roaring and shaking the trees. It smells wet and green.

What can I say? My new full-time job is swishing and swashing my mouth out with bi-carb and brine umpteen times a day, brushing my teeth, gently, applying mousse afterwards. Taking multiple cold showers (hot showers are out) - the weather has been favourable, soon to clean only with Sorbolene, slopping on moisturiser, guzzling the insides of my pink glass bottle. Refilling it many times a day.

I had a first attempt at stacking the pop sticks in the left side of my mouth to increase the gap, to reduce the trismus. OW! Five minutes was enough. Endless, endless, endless. Repetitions and so necessary. Handfuls of pills, as many as I can swallow and remember to take, for the mouth pain, gout stabbings, mood stabilisation. Food is dodgy, monotonous, ridiculous or, at worst, excruciating. Garlic needs to be cooked. Same for spring onions. Don't even go near chilli or spices. All pieces need to chopped mighty fine. Eggs are good. How many ways can you cook egg? I had mashed potato for tea one night, sloppy and lumpy, yet nourishing and filling. A drama; home-Dad, Michael, had been too tired to exert himself over a hot saucepan of boiled potatoes. I couldn't lift myself off the couch.  Let's just say, love did not find the kitchen on this occasion. A better evening was the famous carrot and ginger soup affair; super yummy but can't be stomached too often. Boredom. I'm thinking of trying pancakes ...

Ventured into a larger body of water today. The local pool. Having suspended my gym membership till March, I suddenly craved, ... Cracking thunder preceded by blinding light. Baby, terrified, emerges from her room for a reassuring cuddle.

The weather is spitting on me now.

Where was I? Needing exercise, all of sudden. Felt like a large blob, despite dropping three kilos in the week after the biopsy. Might have had a bit to do with the pain I took force feeding myself Turkish Delight, Lemon Cream biscuits and soft drink, last night. So Amy and I donned our new togs and toddled off to the pool. A sweaty 15-minute walk. On arrival, we were told, "the water is piss-warm". Nice. Anyway, we plunged in with only one pair of goggles between us. Such is the sensibility of a 9-year-old. It was lovely, so long as we didn't move. Two and half laps, had me puffing and feeling weird. All this chemical water infiltrating passages where doctors and their scopes or scalpels had so recently been. Phlegm surfaced and I decided that was probably enough exertion for one afternoon. Certainly with the head submerged. Amy was also tired, still being on anti-biotics for her recent infection. It was a short visit. Revealing and worthwhile I feel.

What else have I done? Further pushed the priority housing issue along seeking the support of our local MP, also a friend and fellow member of the church I have turned up at for about 20 years. Long time. Had a gorgeous extended chat with  BFF school-friend, Sues. Managed to grab the phone in time AND find a connection on the back balcony. She may visit Darwin in the first half of next year. Lovely. Took another step along the path to setting up Amy's 10th birthday party in January, including asking for my second round of chemotherapy to be deferred to the following day.

Now I really should be in bed. It's Friday December 2, 2011: 0039. Happy Birthday fellow blogger and dear friend David.

Good night. Over and out and may I rest in peace. Amen

A Date For Treatment Has Been Set

Wednesday, November 30, 2011

It has been a week since my last entry. So much has happened. My energy crashed along with struggling to understand how a blog works. My life has spun around. Will it return to vaguely similar? Do I want it to? New career prospects, new home, new eating habits, new neck complete with skin colour and tautness?

My 9-year-old daughter has sung and danced her way through another school Christmas Concert. I have been wished well by several parents in an uncomfortable, over-filled theatre foyer.

The Top Dog on my case, Dr Brutal, Head of Ear, Nose and Throat, dropped the worst case scenarios on me last Wednesday, having rifled a nasty scope up and along my nasal passages. Reduced me to weeping and gripping my husband's arm hard. Cancerous Tumour, T3 (medium stage) most likely, T4a (possible recovery, virtually terminal) if it has entered muscle tissue, T4b, in the bone (forget it, you probably won't have long to live). He was mildly reassuring while blunt. More information overload.

Despite an agonising 40-minute wait to see this man, we were out in time to enjoy a supportive meeting with a friend by the seafront. A quick turnaround back to the Oncology Unit for a prolonged and delayed session with Nurse Kate on how to look after my skin during radiology. "It will burn. You must use Sorbolene at least three times a day, in the morning, before and after the treatment and last thing at night," I think she said. Haven't absorbed all these instructions yet.

She said a lot of other things and gave me a fat folder of handouts none of which I can recall.

Social worker Vicky stole us while we waited for Kate, telling us about the additional Carer's Payment Michael may be eligible for through Centrelink. We had a long yack about nothing I can recall.

Thursday was a distasteful trip down memory lane to the Local Mental Health Centre, which I frequented often in my late 20's and 30's. Suspicious at first of the slender hippy chick psychiatrist she was actually okay. Later that day she rang to say she had written a letter to move us along in priority government housing.

Friday is a complete blank. A chap at a 12-Step meeting at which I had shared about my cancer said "my level of acceptance was inspiring". I was grateful for that.

I had my usual lovely Saturday morning with friends and 12-step members. Managed to score a couple of $2 skirts from the church op-shop I can wear.

My daughter fell sick on Sunday, earache and fever. This was upsetting and depressing as she sickens just before her Christmas concert each year. She said she was more anxious about me than anything. My behaviour lapsed into occasional shrieks of frustration. It would've been better for all of us if I had gone to church.

Amy was drugged and dispatched to school on Monday. I heaved a sigh of "Thank God" when the final curtain plummeted. A planned ice-cream trip post-show was aborted when the shop had closed down. Not a fabulous night. Still.

Tuesday, dentist!! Pommy Andrew, who likes to admire his 'masterpieces' went to town on my mouth, scaling and cleaning and plying me with top shelf toothpaste for "sensitive teeth prone to decay". Not that mine were too bad considering, he said. "You mustn't have a sweet tooth". I've only lived on ice-cream pretty much since the biopsy on 11/11/11 at 11am. He also gave me a mousse, like tooth conditioner, with bulk fluoride to bolster my enamel. Vanilla flavour. Yum! Something that tastes good at last.


I saw him again today. Despite having my trismatised mouth (left side lock jaw) prised open for over an hour we had quite a jolly time while he repaired a filling and polished another. Talking about the horrors of tooth whitening toothpaste and bleaching treatments, and pros of coffee.

My BFF, Sam, escorted me today into my journey of pain horror. It was lovely to have such a caring friend pick me up and be there for me, take such an active interest in the cancer.
Dentist, final questions with ENT, the formal date for start of my treatment, chemo and radiation therapy is set. Monday, December 12, 2011. Bring it on.

One disturbing wound continues to bother me.... more than some others. The centre of my hard palate feels raw, like it's been sliced open and the area refuses to heal. What is that? The cancer?

Thanks to Sam being so generous with her time, I have also connected with The Cancer Foundation today. They were welcoming and responsive. Left with a load of booklets and calls to come back whenever. Now just two wisdom teeth to be extracted on Tuesday. Fun, fun, fun. And Amy has her orthodontist appointment on Monday. Another big tooth week for the family. A few days to recover and read the literature before Treatment begins in earnest!!

More stunning tropical beauties arrive from friends and supporters

C'est La Vie till next time.

Into the Cancer Whirlpool

Wednesday, November 23, 2011: 1751

A week ago my mouth was in agony following a biopsy the week before that.  I went to see the ear, nose, throat specialist to deal with the pain. He looked at me cheerfully and said, "You're here for the pain aren't you? I did your biopsy on Friday. You probably don't remember."

Instantly, I felt like strangling and punching this butcher, the pain was so intense.

"You have throat cancer. A big one. That's why it hurts so much. Five centimetres emanating from your soft palate."

 I started disassociating -  falling apart while remaining seated, staring at the specialist. He spoke on drowning me in information, details, facts. I felt submerged, half a metre under water. Kind of numb, a buffer of something between him and me.

Tuesday, November 22, 2011:  2.43pm

A major vegie omelette under my belt and a little snooze I am feeling ready to face the second half of the day. Child to arrive home soon so time is precious.

This morning started ominously knowing that the results of yesterday's CATSCAN would be delivered around 10am. Do I have lung cancer? Has the lesion spread to my lymph nodes that hem either side of my neck? Nausea, tension were present.

Now it seems like such a long time ago I can barely remember what happened before Michael and I got out the door at 9am to visit first Amy's school principal and then the Oncology Department.

I dress with particular care aware that I would be jumping up and down off a number of high narrow tables, including having a second CATSCAN, and a plastic mesh mask melded to my face. Simple fun tunic top and leggings. Cardigan essential for the hospital air-con.

The power of prayer is everywhere

The Angel Cards called me again this morning and I was blessed with Saint Dymphna - the St of Mental Illness, which I found comforting since I have bi-polar which may go haywire under the duresses of the next three months. So far so good. I am feeling remarkably stable. Eating well-ish, sleeping, not TOO irrational, though I almost lost it over the lack of home-brand bread in Woolworths yesterday. I mean, please, a loaf of bread? Get a grip, girl.

The greatest love of all, the hardest to live up to

Dymphna urged me to let my emotions out, so I freely expressed myself today much to the amusement of the gorgeous radiation therapy doctor. More on him later ...

I was to focus on "finding it", courtesy of St Anthony. Not sure exactly what I have lost (health, confidence) but we picked up a new bedside table for me at Crazy Clarks along with a vaccuum cleaner, and a couple of GLASS water bottles. No more drinking out of "carcinogenic cancer-causing" plastic if I can avoid it. Mine is pink to match the "pink lady".

+

I almost had a meltdown at the school when much kindness and empathy was shown. Though I am becoming used to that reaction now. It is always beautiful receiving humanity at its best. My 9-year-old's end of year situation was discussed and sorted so that she would be understood and allowed to feel her way through my illness. Counselling sessions at call and the Assistant Principal in line for her to talk to any time she needs another adult to lean on. I am so glad she is at that school.

Amy drawers a prayer - These Hands, our family's hands.
 Pearl Cat is pulling her paw.

After our shopping capers we head to the hospital. A woman in the queque behind, frustrated with me asking the price of an item, barked a nasty remark. It caught me quite off-guard after all the love and kindness we have been swamped with since Friday. Fortunately, I responded in a civil manner, though I wished HER a dose of cancer when I was in the car with Michael moments later.

We had an interminable wait in the Oncology unit. We were early and the doctor was about 20 minutes late. Waiting for death sentence results seriously slows down time.

Priscilla, the speech pathologist, sprung a diversion with her series of questions and swallowing tricks. She even offered me a tub of two fruit which quelled my hunger beautifully. Apparently I am doing quite well at this stage, eating and talking wise. It will get worse, a lot worse, when the ulcers erupt about three weeks into radiation.

At last, Sid, swoops into his office where we are ensconced, medical student Emily in tow. I am the "radiation doctor" he introduces himself and brandishes a business card. "Siddartha", my favourite book, I blurt upon meeting this endearing individual, instantly likeable and who clearly knows his stuff. It's "quality assurance" with Sid all the way and he sets back my treatment start date to December 12. This is "high intensity" and we must get it absolutely right. Takes three weeks to prepare. Make sure everything is spot on. Try out the radiation on a dummy patient, make sure it is hitting the right spot. Wouldn't want to make a mistake.

Not the slightest bit concerned about my death scan he checks it out for us anyway. "All clear, as far as I can tell". "Are you sure?" I ask. Sid has had a very quick look. "Yes, yes."

So after a few more rudimentary questions and an information buffet I sign a treatment consent form. We move along to the next stage via some super comfy recliner chairs. Lee arrives to whisk me off to have my second CATSCAN in two days and fit the plastic mask.

The white plastic mesh which looks like a hockey goal, descends upon my face, hot and wet. It is rapidly pressed and clamped securely in place. Every instinct in my body pushes me to wrench this suffocation off me. "God grant me the serenity to accept the things I cannot change ...". At last Lee returns to free me and I'm out of there. Waiting again for more nurses and more information regarding skin care.

No, I can't take any more of this today. We're gone, into the sunshine, home for lunch. Rest, relaxation. Meanwhile, a beautiful friend has invited us to her home for dinner. Amy slaves in the kitchen making her signature dish, "Spag Bog" for our tea tomorrow night. C'est la vie!

Then the phone rings - Ear Nose and Throat doctor wants to see me TOMORROW morning. But I have an appointment for next Wednesday. "No, tomorrow, please" I hate the urgency of the nurse. What dread does this mean? What choice have I got? I must go. I negotiate for my 12-step meeting at 10.30am. Yes I'll be there at 9am. 

"I'll get you through first up," the nurse says. So 9am, 10.30am, 1pm to see the Onconology nurses,deferred from today. Phew!!!

Then another message - make an appointment please to see the psychiatrist at the local mental health centre.

"Thursday, 9am," and on and on it goes .... Am I going to get a break here? Amen.

Love you heaps,

Gill xxxxxxxxxxxxxoooooooooo

Monday, November 21, 2011:  1pm

"So far today I've had the chemo chief, Meena, lovely, lovely lady with a generous behind who plied me with info before softly seeking the history of my sick life. Michael nearly fainted - turned a whiter shade of pale - No wonder that's his favourite pop song.

She introduced us to nurse Paula who rambled at length about something to do with appointments and chemo and radiation before passing us on to Louise, Nutritionist, who beamed health at me, said little. She just asked a few questions about what I was able to eat while nodding beatifcally.

Then Kate, nurse, invited us in to her cubby hole and waxed lyrical about "the pink lady" potion which would numb my mouth and throat for up to two hours, enabling me to eat pretty much anything I fancied but it would all probably taste like cardboard. Start with 10mls, you can go up to 30mls when things are tough, see how you go. "It doesn't taste very nice".

Then it was off to have the CATSCAN to see if the cancer has spread anywhere else - lungs, neck. Waited long enough to freeze and dry out, then whoosh, through the scan with dye - hot rush and icky feeling all over. Out again to finalize the paperwork and have the other arm pierced, and about 6 vials of blood extracted for base line levels of all my drugs and conditions. 

Finally home, a nice hot cuppa coffee. Had already sculled Michael's 600ml concoction of Milo and coffee, in the sun, the moment we exited Royal Darwin Hospital.

Reclining on the couch studying a stack of Christmas "light reading", a calm moment of normality. A delicious mango later, (after numerous blood spits possibly caused by a rush of Milo?) I check my emails.

Taking the time and opportunity to respond in full ...as I intend to start a blog asap, So there you have it Muse M.  Shortly I will re-dress to head off to the hospital for the second part of today - the JOLLY Dentist!

To continue: at 2200

 The pink lady is disgusting but it numbs my mouth fairly effectively. I am ushered into the dentist almost immediately. He is Indian. I can barely understand a word he says but he does his best to assure me nothing bad is going to happen to me today. An agonising half hour later, opening the mouth wide is far from easy, let alone the other things dentists get up to... The upshot is a scale and clean, a filling replaced and a filling repaired, one on the left on Tuesday and one on the right on Wednesday next week, oh Joy of Joys. He says he will also make me a dental guard that I can fill with fluoride to protect against the rapid decay caused by radiation therapy or some such hideous thing. Can barely wait. Looks like sugar may be history.

Home just in time to beat the little one's arrival at 3pm. Knackered. Decide we have to tell her I have cancer before she finds out from somewhere else. Michael is compulsively cleaning to the point that, at great expense to my throat, I shout at him to SIT DOWN, and then blurt out to Amy I have Cancer. She bursts into sobs and we console each other for about 10 minutes. Then she starts the rapid fire questions. "Will I die? Is it catching? Who can I tell? What's going to happen?" and so on. Then she seems quite settled. We opt for Subway for tea, I swallow another revolting 10 mls of Pink Lady. No sooner than we arrive at the shops I spot Nana May and Lynde, who I haven't seen in months. Amy gets to break the "news" for the first time and handles it admirably. Another member floats past. I don't believe in co-incidences. We jump into the Good Luck Shop so Amy can choose a lucky charm. She finds an orange kitten hologram which suits her and my budget down to a tee. After nabbing a few items at Woolies we head off for our meal. Helen has tracked us down finally after being on our tail since 2pm. She presents me with a massive bouquet of stunning purple orchids and white lilies barely opened, a floating "Hope you're feeling better" balloon and an assortment of my favourite chockies, Turkish Delight (soft), Cherry Ripe and a Toblerone for Michael. It is a lovely meal, after an enormous day. Embraced in love and caring friends.

Home for Master Chef and solid relaxing. Sorry for those calls I missed. My phone has been off all day and it is playing up a bit as well.  Thanks for these beautiful peach roses and all the well wishes.

Abundance of joy. Biggest Heart Helen

Peachy lovely ladies keep my spirits up

xxxxxxxxooooooooo
love Gill