Five Months

Before we go on … The ‘Cure For Life’ foundation is an organisation that is devoted to finding a cure for brain cancer/tumors. I haven’t looked yet, but their site is
http://cureforlife.org.au
I’ll be having a good look and may offer input about a combinination of Soursop, Paw-Paw and cannabis oil. All three plants’ fruits have been shown to have ‘Cancer killing’ properties in lab and animal testing. Put quite simply, different compounds in all three plants induce death in cancerous cells, without damaging healthy cells. When will human trials be approved? We are talking about three relatively easy to procure or grow, plants. Two are completely legal in every way. Why aren’t clinical trials being conducted now?
Julia Gillard. You could make change. But I seriously doubt you’ll *ever* read this post. You’re a very busy person.
OK. Enough frustraton.

*This was the original post, before I added the above*
It has been Five months now since my Baby flew with the eagles. I thought I’d put some pics up here today (which was Wednesday). They’ve been up before. Some of them at least. Maybe some of you might like them. Eight months of photos of my sweetheart. We really didn’t like having our photos taken, so consider these rarities. Photos taken between March and October 2011.

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On the 13 March 2012 at the Barron River rest stop, just East of Mareeba. This was when Jimmy blew a gasket & Phil came to our rescue. He helped us out with some cash & we got Jimmy running again. We spent a week here if I recall correctly.

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On the 21st of March, we got down to the Little Annan crossing for a look. Tina made a cairn in honour of the kids. She left many of these in random places.

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22nd of March, on Grassy Hill Cooktown. She was so happy to be here. She beamed. Couldn’t get the smile off Her face.

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In April, Tina got her first ‘commissioned’ art job. Painting the croc at Pam’s Place in Cooktown. Croc gets decorated for special days, a trend Tina started with Easter, then Mothers Day (with Marys sewing skills assisting).
On Australia Day 2012, Scott and Ahdee from Pams Place decorating Croc with flags and stuff.

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Walking on Finch Bay beach. Looking for pretty things ๐Ÿ™‚

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Remember the ‘Planking’ controversy? We staged our own little protest. This was Tinas effort. Pretty brave to plank a Croc.

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At ‘The Top Pub’ on the 27th of May 2011. With a bunch of the banana workers, & Mary our Estonian pseudo-daughter, with Tina at the end of the table.

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On the same night with Thomas Lakefield. He was the third person we met in Cooktown. A gentleman.

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The next day we headed for Cedar Bay. Tina was checking the depth of Gap Creek, plus checking for big rocks. The clear water was very deceptive. That rock base was rough.

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On the way out of Cedar Bay, we took a photo of this old boat wreck.

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30th of June 2011. At our home, with Andre, ‘Legend of the North’. This is the last photo on my phone of Tina before our world collapsed.

And then…our Sister Kathy, & the kids, have a heap of photos of Tina in Townsville. This phone had mysteriously died while we were there. Here are some photos of photos.

In a lot of these, Tina was mucking around with Her kids. You need to realise that these were taken about a week after the operation. The first ones were taken about three days after the op. Tina recovered amazingly well, even surprising the surgeons.

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With me

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With lil sister Tracy

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Tina, Her brother Paul, Tracy, and Her big sister Kathy.

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Tina and Her youngest daughter, Loren.

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Her big brother Mark, with Loren and Lillian, my youngest.

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Kathy and Tina after they shaved their heads.

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Tina and her photo window. She had the most loving, bright bedspace in the hospital.

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Tina and Her Boy, Alex.

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Playing ‘Face-Off’ in the lift.

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This was Her, “I’m brain damaged’ look to scare hospital visitors ๐Ÿ™‚ .

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It’s sideways, but this is a little more ‘normal’.

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Tina & I. “More photos? Aaaw but…”

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Tina & Loren again.

I don’t have any pics of Sarah or Vicki, or Ella with Tina ๐Ÿ˜ฆ

I think that’s enough photos for one post. I’ll pop some more up in another post sometime. From when we came back to Cooktown.

I hope you get a smile from some of these photos.

A Long Week – A Heavy Read

On Tuesday 4 October, it was just over two weeks since Tinas first seizure.
At about nine in the morning we were sitting at the table in the kitchen. She’d been rubbing my back as I leant in my chair. Tina had put noodles on for breakfast. She hopped up and checked the noodles, then picked up an avocado and sat down. I looked at her as she placed the fruit gently on the table. She looked at me and something caught her attention in her right peripheral vision. Something imaginary. She turned her head slowly in that direction, and then I heard that sound she made as her first seizure took hold. An urgent intake of air, accompanied by a moan of fear and dread. Sucking in pain. Tinas eyes roll and her entire body tenses. Small but intense spasms occur for about 3 to 5 minutes, then her body slowly starts to relax. The muscle contractions are so intense that she produces an excess of saliva. As Tina relaxes, the exhaustion becomes apparent. She takes gasping breaths, forcing oxygen back into her body. Later she sleeps. The seizure is completely draining. I let her rest, planning to see our GP later in the day when Tina recovers.ย  Just before 11 Tina stirs. I walk her to the toilet and wait for her. Then we walk into the kitchen with me following. As we enter, she stops and reaches for ‘something’ on the table, then turns and looks at me. Her look goes vacant and her eyes roll. I’m close and take her into my arms and lay her gently on the rug. Her spasms aren’t severe but the seizure lasts about 3 minutes again. The boys are out so it’s just me. I leave her for a few seconds and find her a pillow to make comfortable. At the same time I phone the ambulance. Two seizures in two hours is not good.
The ambulance arrived after about 20 minutes. They were on another job out of town but came asap.

We arrived at the hospital and Tina was administered an IV solution of anti seizure medication. Tina was really tired, so the Doctor and I agreed it would be best for her to have a quiet night in hospital. We had a hospital dinner together and then I stayed until Tina dozed off again.

I headed up early Wednesday morning to see how Tina was, and to see the Doctor. It wasn’t until late Wednesday arvo that we eventually left, along with a prescription for phenytoin, an anti seizure drug that may or may not work. There really are no anti seizure drugs specifically for glioblastoma multiforme. Brain cancers are not predictable. Phenytoin works really well for most epyleptics, and that is its primary use.

Thursday 6 October 2011

We stayed indoors and veged out in front of a few DVDs. Tina has very little energy and doesn’t feel like going outdoors much.
It has been less than two months since Tina was first diagnosed with a grade 4 glioblastoma multiforme. For those uninitiated, it is the severest, most aggressive form of brain cancer that one could be unlucky enough to have manifest. Tinas not only covered most of the front right section of her brain, but was also encroaching on the left side. The neurologist also said the cancer was deep in the centre of her brain.
So, it’s been around five or six weeks since she had a six hour operation that, as the neurosurgeon warned, would only remove some of the tumor.

Tina was discharged from Townsville hospital on Monday 19th August. I wrote in an earlier post that all the doctors, nurses and other staff in the neurology ward were amazed at the speed of her recovery. I had expected to be with Tina in Townsville for at least a month, and here we were, a week after surgery, getting ready to come home to Cooktown.

On the 19th of September, a Monday, Tina had her first seizure. We’d been warned about the possibility and I thought I was prepared. But you know,in the first few seconds of the seizure taking hold,I thought my baby was having a heart attack. After 30 seconds or so,Tina had gone rigid and wasn’t in spasms.
You know the rest.

I need to clear up some things in my head and help you understand how Tina is now. But I need to also remind you of the talented, creative and strong woman that is also Tina. Before the GBM took control.

Tina is a writer:

http://www.redbubble.com/people/phoenixart/writing/5828720-saviour-excerpt-001-the-gang-in-the-desert

An artist

http://www.redbubble.com/people/phoenixart/art/4456655-alien-landscape

A photographer (and grandmother) ๐Ÿ™‚

http://www.redbubble.com/people/phoenixart/art/5884218-raspberries

An online environmentalist

https://thegreenbus.wordpress.com/2010/11/01/100-renewable-energy-within-10-years-is-it-possible/

Nobody knows whether my baby will once again write or paint, or even enjoy a long walk on the beach. Tina just hasn’t the energy she once had. A full day rock hopping and caving. A walk on the beach that might last four or five hours. Just four months ago Tina walked in and out of Cedar Bay. A 6 to 8 hour walk through wait-a-while infested rainforest, over a steep saddle, and across sometimes oyster covered rocks.
Today, a walk outside is draining. Tina no longer writes or sketches or makes art. She finds it hard to express her emotions. She said one day a while back, “I wish I could cry.”

I guess I should post this. We’re heading for Rockhampton tomorrow and I have lots to do.

Yes We Ran Out Of Credit Again

Sorry folks and family. We ran out of credit again. As is usual,things happen when we run out of credit that we need to contact folks about. Read on…

So what have we been doing? Not much of anything really. We’re trying to save some money so we can roll/fly/bus/train or otherwise get to Rockhampton.
I owe our friends at The Sovereign money loaned to us when Tina first got ‘sick’. We also owe friends and family money. I know it doesn’t overly concern anyone, but it sits in the back of my mind all the time. I need to discover and embrace that evil term, ‘budget’. Shit. The closest I’ve ever come to using a budget was when I hired one of their bloody cars! Ah well. I’ll sort it out.

On Monday afternoon (19 Sept.), Tina suffered her first seizure.
We were at Dragons place watching a movie (yes, we watched Tele-vision).ย  We were lying on the floor and Tina rolled over on her side and stretched, or so I thought.

“Having a stretch baby?”

She didn’t answer, and then she started to spasm. Not severely. More like full body tensing.
I put her on her side and looked after her while Dragonย  rang the ambulance. The seizure lasted between three and eight minutes. The ambulance call operator stayed on the phone until the paramedic arrived,then we headed for the hospital.
We were up there for about four hours, while they ran obs and gave her some intravenous anti-seizure drugs. We were given the option of staying in overnight or going home. Given that the hospital is just up the road, we decided to head home.

Seizures are supposed to be common in tumor and/or post brain surgery circumstances. However, it still doesn’t make them any easier to deal with.

I am trying hard to stay positive and all that, and I know one in three Aussies will be affected by cancer in some way in their lifetimes, so we’re not unique. But it still doesn’t make dealing with this any easier. It doesn’t make it any fairer. It doesn’t make it ok.
I want to rant and rave about how peer reviewed scientific research is showing very positive results with certain drugs in fighting GBM (brain cancers) and killing cancerous cells while leaving unnaffected ones healthy. I want to scream at politicians for not allowing further research or testing of these potential cures.
I want to swear and curse and scream “Why Tina?”, but there is no point. I’ll just be another of the thousands who have done the same while their loved one suffers from some cancer or ‘incurable’ disease.

But that’s not why I haven’tย  posted this until now. We just ran out of credit and money last week. Tina is good too.

It’s All About Us

Hey gang

4:20pm ๐Ÿ˜‰ Tuesday 13 September 2011
After getting cleaned up at the Dragons Lair, we headed out to Walker Bay. First we checked the North end, then headed to the South to find some shelter from the trade winds. We found a nice hidden clearing about a hundred metres (330ft) in from the beach. The thick coastal scrub just lifts the wind over our heads, but also lets the breeze flick in a little to keep things cool and fresh.

I learnt a lesson today. Tina should not have shopped by herself at the supermarket. She insisted though.
“I haven’t been in their for ages! I’ll do the shopping.”
Tina purchased some avocado, bread, tomatoes, eggs and potatoes. Cool. She also bought a tray of herbed steak, a cold chicken, some cheese kabana. Enough cold meat for three days. Cool too. Except we have no fridge or ice. ๐Ÿ™‚
Now, we could have eaten the chook last night. But…we also had two live crabs that our bama mate had given us. They were happily resting in the mangrove leaves in the old blue Styrofoam esky we’d found at the Annan.

A Quick Diversion

Bama Explained
The term ‘bama’, pronounced ‘bumma’, is the local term in both guugu yimmithir and kuku yalanji languages for person or people. However, over time it has become the respectful term for differentiating between local aboriginals and white people. White people can sometimes be referred to as migaloo (whitefella), but that’s generally reserved for tourists who travel up here around the same time as the whales migrate North. We sometimes think there was an in-joke going on when the White humpback whale was named.

Crabs
Our somewhat famous mud crabs are arguably the best tasting crabs on the planet.
Mud crabs are most commonly found in tidal saltwater, mangrove lined rivers and creeks. They’re also found in mangrove lined coast.
Now, some people may argue with me, but in our humble opinions, the best way to cook Australian Mud crab is thus:

Assuming a 1 kilogram (roughly 2lb) mud crab.
It must be alive! If you can’t get live green mud crab, ignore this and buy a cooked one.
Euthanase it.
Squeamish people avert your eyes. Either place in a freezer for an hour,or spike it between the eyes with something sharp.

Preferably get a big pot of fresh clean ocean water,about 5 litres (1.3US gal) and bring it to the boil. Immerse the crab and allow it to come to the boil again. Boil for 15 to 20 minutes, then take off the heat. Let it sit in the hot water for a couple minutes, then remove and immerse in a bucket of cold saltwater.
Leave in water to cool for 15 or 20 minutes before eating.
Oh, if you put thick layers of fresh mangrove leaves in your esky with your crabs, they’ll live for days. Keep the esky in the shade and open it for fresh air a couple times a day. Replace the leaves every couple of days or so. Only mangrove though.

End Diversion

Anyway, we decided to cook and eat the crabs instead, and sacrifice the chook to the dogs in the morning.
Dinner was fresh Annan River mudcrab, boiled in Crystal clear Walker Bay ocean water. Accompanied with ripe Avocado, tomatoes, lettuce and soft multigrain bread and butter.

We went to bed early, listening to the ocean and the breeze we’d become so used to before Tina was diagnosed with the GBM.

Wednesday 14 September 2011

We both had an interrupted sleep. Tina was awake more often than me, listening to the radio and quietly shushing Jack when he barked at a hog or wallaby in the undergrowth.
I woke around 11pm. Then at some hour after that, I woke with an overwhelming urge to throw up.
After emptying my guts, I felt much better and slept til dawn, about 6:15am. Tina was fine. Not sick at all. Just not very tired.
I did something silly while cleaning up last night. It may have contributed to my sickness ๐Ÿ˜ฆ
This morning, Tina had some steak and salad for brekky. I took our long bucket out to the beach with Jack to get some washing water. There’s a good 25 to 30 knot Sou’Easter blowing off the ocean onto the beach. Our spot in behind the 4 metre high, dense vine scrub is well protected, but the wind still rips through the canopy at the edge of the clearing, letting us feel her freshness when a gust rolls like a wave into our camp.
Which leads me to the beauty of Pig.

Pig, of whom I think you are intimately aware, provides our cooking fire, warmth and entertainment during our nights here in Paradise. Pig can contain a fire and its ash in a 20 knot wind. I reckon it could handle more though. The mesh on the vent at the bottom of Pig, Pigs Arse, holds the ash until it has completely burnt. The ash can’t start another fire outside Pig. The only evidence of Pig that you’ll see after we leave a camp after a few days, is a small pile of ash that might, but probably wouldn’t fill a 10 litre (4gal) bucket. Thankyou Legend Of The North, Pig is good ๐Ÿ™‚

Tina weighed herself Tuesday morning at the Dragons Lair. She was 67.7kg (10.6 stone 150lb).
Prior to the Dexmethsone treatment, well actually, the Thursday Tina flew from Cooktown a month ago, she weighed 58kg (9.1st or 128lb).
An extreme appetite is a common side effect of Dexmethsone. There are others as well, some quite serious. I think it is either the Dexmethsone or the omezaprole that lowers your immune defenses. We have to be careful in case Tinas system weakens.

Today will be a quite lazy day for us. We’ve gathered wood, collected water, cooked breakfast, checked the weather on the radio, and decided to do a lot of nothing today.
Images today are of The Penn rod we found washed up on the beach. Which reminds me. I forget when we’re in range to Google this rod. Do any of you fisher folk have a replacement value for it?
There is also the float we found that will be for JJ or The Legend, a few obligatory Jack and Floyd shots (puppehz izz cute), and whatever else I have a whim to show. ๐Ÿ™‚
For example, Tina dozing in her ‘Fraggle Rock’ t-shirt ๐Ÿ™‚
Pig is there with his Blue 5 litre enamel pot (another gift from Legend). See the ash pike? That’s from boiling two crabs, boiling the billy twice, pan frying steak this morning,and boiling off the crab water this morning.
OK, here is a Tina-ism. It might give you an idea of where her head is at at the moment. Her confusion with naming things is more pronounced early in the morning, or at night when she is tired.
“These guys taste pastel!”
…said whilst eating weet-bix with creamy mixed powdered milk at 10pm one night. Pastel=like cream…duh!
…and Aussie kids are weet-bix kids! Sport, team, guys…
If you don’t know weet-bix, Google them too.

Lunch time!
A Tuna salad of Avocado and raw Broccoli florets with seasonings. Too nice on a tropical Wednesday.

We have plans for next month while waiting for the Pensions to come through. First,Tina is adamant that we attend the Wallaby Creek Music and Arts Festival. We’ll get a Centrelink payment on Thursday the 22nd before Wallaby Ck, which runs from the 23rd to the 25th. The tickets will cost us around $200 for the weekend, but dogs are banned. What do we do with Jack and Floyd? I heard a place in Rossville will board dogs for the two days. Jack and Floyd would be very well behaved, but I guess rules is rules.

3:30pm. Time to sneak into town and get some non-perishable food ๐Ÿ˜‰

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