Diary Update Tuesday, 30 November 2010

How do I feel today?  I always ask myself when I awaken, maybe not in words.

Chemotherapy next week

Today, I have mixed feelings. Nothing too bad, nothing brilliantly good. In some respects my body has fought off the worst of the effects of the November chemotherapy, but it has taken longer than at any time before. I expect the final time, starting a week tomorrow, to be worse, though psychologically I will have the advantage of knowing that it’s the last time these poisons are infused into my blood, that Christmas in coming and I share that with Tracey and Christian and I will see my girls.

Retraining my brain

I have to say though, that I have feelings of impatience towards myself. I expected to be able to walk better; to train my right ankle, knee and hip to mimic the left side, but even though I think about it and focus on it, the ankle feels like it won’t flex and the hip joint is spongy, so I walk like a person who has had a broken hip and it’s never been properly repaired.

Seizures

My right arm – sometimes I feel I am making progress, sometimes not. The seizures I had a fortnight ago when the steroid level was dropped too quickly for my body to adjust were probably more damaging psychologically than physically, yet I still feel as if I have to nurse the arm along. The physiotherapist’s manipulation didn’t produce a seizure in it, so it should be OK. Yet I hesitate. Seizures are my nemesis. They are a perpetual reminder of what’s really happening in my brain.

Steroids

Meanwhile, the continued steroid changes my body chemistry noticeably. It’s nearly six months now since I started Dexamethozone, on a quite high dosage though tapering off. It did the intended job at the time when I was at my lowest point mid-year, when the chemotherapy was failing and the seizures were increasing in number and duration.

I was determined not to acquire the classic facial shape and increased body weight of those who have to take cortisone for long periods, yet it’s happened. That unhealthy looking puffiness. Even though the use of the Dexamethozone steroid has fallen from 8 mg at the start to 2 mg now, it remains as an interference in normal body operation, especially as it is boosted to 8 mg for the three days per month the chemotherapy takes place. Lowering it any more than 2 mg daily runs the risk of new seizures.

Sleep

I also seem to be sleeping a lot, but that isn’t a bad thing. I’d like the pattern to be more fixed, but sleep comes and goes when it wants and there’s little I can do about that. I just have to go with it and be grateful it happens. I do feel a tapering off of energy as the effects of Avastin start to decline before the next treatment.

Good things

I am also grateful for the fact that I still have my rationality and my left hand, and the fact that I am still interested in the things going on in this world. If it weren’t for Tracey, I suspect they would mean much less to me. And family on both sides, and good friends of course: without them as well, meaning soon fades.


We have enough money to pay for the December Avastin, and that should be the last time payment is required. I am grateful for that, and for Avastin, and to everyone who made it possible.

Christmas wish

I want no medical dramas for myself until after Christmas at least. Well, of course, I don’t want any at all, but they will come inevitably. I just want as a Christmas present to sail through December chemotherapy as peacefully as possible, and for us all to have a happy time together.


I really don't expect people to be following these bulletins daily, but I just like to have something here that is current for those who drop by when you do. It is heartwarming to know that people are interested, but everyone has lives to lead and there's absolutely no reason why anyone else should be so engrossed in mine as I am!


The most recent information should always be on WHAT'S NEW! - see the right hand side.

On dramas and dates

Scene from HMS Pinafore - it does have some relevance below!

I slept late today, after a night where I lay awake round 3 am for a long time. It happens, usually after a night when we’ve seen friends, had a glass of wine…. It’s not like this hasn’t happened before this tumour manifested – it’s often been the way. The waking up early I mean, after a stimulating night’s conversation, a little wine and probably foods I don’t normally eat.

I used to get up and do things. Now I tend to wait, still my consciousness and let it drift in calm waters, contemplate the fortunate things I have and stay away from the ones that gnaw away at peace of mind. Then I drift back into sleep and usually wake past the time I would normally get up. But it’s probably best for me to have such episodes earlier in the day, rather than late – the stimulation, I mean. More and more I seem to need routine in my life.

November is almost over. Last year at this time we were playing squash three times a week for an hour at a time, and I had just finished filming a musical. I loved doing that. After years of practice and making some terrible mistakes with technique, I was just starting to get good at some aspects of this craft. I loved getting to know the plot word for word, where every person on the stage was going to move for every second of the show, night after night getting the best angles possible under whatever conditions. 

Then going home afterwards and getting each show straight on to the computer, watching each second, groaning when I slipped up in the filming and vowing to correct that the next night. I could discuss each scene with Tracey, who spotted things I could not see. These were very special times.

HMS Pinafore closeup

Later, I would review all the various nights’ shows and put together a version for the performers and production team to view. They are all so busy when a show’s on that they never get to see what the audience does. This was my favourite time of all, as friends who had participated in some way and who knew the show very well could watch it, laugh at it, at each other, at the blooper section at the end….

Their enjoyment was my reward for the many hours put in editing video and sound, trying to show it all at its best.

All that disappeared for me in one minute when that fiery twitching in my right hand started nearly a year ago. The right hand index finger controls the speed of zoom of the lens, which is everything when switching from an intimate moment on the stage to a wide angle shot. Sometimes I could do that virtually imperceptibly. But that control disappeared in an instant, leaving me with shaking, pulsing right hand fingers over which I still have little control, a year down the track.

That was a world, a year ago, when an end point for life for me seemed as comfortable a mystery as it is for most people. And so it should, I believe. 

Once long ago I asked a fellow who I regarded as a strange chap in many ways, ‘Would you like to know the day you’re going to die?’

‘Oh, yes!’ he said without the least hesitation. ‘I could then plan my life perfectly.’

I was stunned. I couldn’t then and still can’t now imagine wanting to know the day I was going to die, whether it was near or not for decades. What a terrible burden that would be!

Then it occurred to me that maybe there are others who think the same way as he did. Maybe there was something that happened earlier in life that would make you desire this knowledge. Perhaps I am the odd one out. I wonder how many people feel like he did?

A Sufi dream.... and some of you

This should please Joan, given her abiding interest in dreams. Today I had a dream.

I have to sleep at some stage through the day, every day. Tracey describes me like a wind-up toy; I go along just fine for a while and then it come to a point where everything slows down, gravity increases incrementally till I just shuffle along, my brain goes into a fog and I must sleep, as there’s no point at all in my being awake. 


I don’t mean rest, I mean sleep. Zeds, lots of them. Or Zees, for some of you over the Equator.

I go to sleep almost instantly and don’t remember any dreams, usually. Sometimes I remember that I had a dream that was fascinating while it lasted, but, frustratingly, I don’t remember anything about it except that it was interesting. I don’t have nightmares. I just know if I could grab one corner of the dream into memory, I could get it all on board. But that almost always never happens, in spite of your advice about these matters, Joan.

That wasn’t the case today. I woke up and everything about the dream was crystal fresh – so much so that when I got up, I came straight to the computer and wrote down some keywords. No, my darling, I know I haven’t taken my anti-seizure tablet and it’s overdue and I know I haven’t been Clexed yet and it’s overdue too, but if this disappears I’m going to be disappointed.

So I did that first, then had my injection, ate a fresh fruit salad of apple, grapes, strawberries (homegrown from Maureen and Bruce), blueberries and red grapes, and here I am to relate it.

I was lecturing in Room A3 at the University of New England, just as I have done for 30 years. Just after I retired, they gave the room an entire makeover and it looks very classy now. (Classy? That would have been quite a clever pun if I’d thought of it, but was purely accidental!)

But in my dream, I was lecturing in the old A3, not the new one totally rearranged – it had lecture chairs fixed to the floor in rows, the back of the chair in front doodled on by generations of bored students, even the classic FOO WAS HERE…. I know this as I’ve sat at them myself at times when guest lecturers were imparting their wisdom. A3 and I understand each other, or at least we did before the makeover. It’s not A3 any more as far as I’m concerned.

The surprising thing was that in my dream, this room was populated by an absolute galaxy of my best students, some of whom read this blog and have far surpassed my modest achievements in academia, and others who will before they are done. I was on the podium as usual, and my lecture was about the coming of Islam to India.

But the difference was that the room was darkened except for the old fluorescent light above my head, and all around the spaces beside the students in the lecture room seats were tiny candles, all lit. It seemed in my dream that I was near the end of the lecture, when student interest usually flags - after all, 50 minutes is a long time to maintain concentration, but these were my best students ever, and they normally saw it right through, even without the tricks I would use to get average students to refocus, if I saw that their eyes were glazing over.

One of the advantages of having been a primary school teacher even in the distant past is that you learn from experience to know pretty much what each student is doing mentally at any given time you are teaching them. I hope that makes a couple of the blog readers squirm to read that!

I noticed that almost every student’s attention was being drawn away from me to one side, even though in my lecture one of the Turki-Afghan Sultans was doing something quite interesting to the residents of Delhi.

So I paused. 


A pause can be a very effective device to centre students, especially when it is two of them softly whispering to each other at length about something of more immediate importance than what was coming from the podium. In that case, I would just pause until they wondered why there was no background droning, stop talking and look up at me. I just ask them politely if they’ve covered their topic of conversation or would like to slip outside and get it sorted out, and we all smile and normal service is resumed. The break in the atmosphere is good for everyone in the room.

But this was different. In my dream, these were my best and brightest from across 30 years, all looking exactly as they did when I saw them first. People who hold personal dialogues in the back rows usually are not the smartest cookies in the barrel.

‘What’s got your attention?’ I said after the pause. 


Usually students are a bit sheepish when they’ve been caught in some other world during a lecture, but I don’t seem to recall anyone being like that. A woman who I didn’t recognise - the only person in the room I couldn't put a name to - volunteered the information. ‘I was looking at that candle.’ 


I could see how the candle was alternating between almost being out for a fraction of a second and suddenly the flame would surge for exactly the same amount of time, on and off, almost hypnotically. Everyone who could see it was taken by the strobe lighting effect - you couldn't have ignored it. These were only small candles but the room was almost dark, and the flickering of this candle ceased after a few seconds. Then it resumed a steady glow like all the others.

‘This reminds me of a Sufi saying.’ The Sufis were the Muslim mystics who made an enormous impact on India after things settled down with the Delhi Sultans – starting just after the time I had been speaking about in my lecture, in fact.

'It's from a lesser known Sufi saint called Jan Fishan Khan,' I said.


‘The candle is not there to illuminate itself.’

Buddha-like flickers of understanding appeared on all the faces. ‘That candle gave us a chance to learn something worth knowing. And now, it’s time for this old candle to fade. We’ll talk more about the Sufis another time.’

Then I woke up.

It wasn’t such a bad dream, I thought. Two hours ago, I hadn’t even had it. Not in words or perceptions, anyway. Maybe it's always been there. It just has to be sent from subconscious to conscious, or somewhere in between.

Kay and the little grey frog

Our house was the old Queenslander style about 3 metres off the ground, so there was a cool living space underneath. This meant that the floor was built on high posts, always wooden in those days and solid hardwood, with ant caps on the top of each post to stop white-ants penetrating the structure of the building. You could always replace a post that the white-ants had got into from the ground, but it was a lot harder to deal with termites once they got into the house itself.

Anyway, one of the posts just below the bathroom my father added upstairs had a hole bored right through it by someone with a brace and bit and more enthusiasm than sense; a hole horizontal to the ground about a metre and a half up. I have no idea why it was there, but when I was about 9, I thought I could use it to play a trick on my youngest sister, Kay.

I found that the size of the hole through the post was perfect for wedging my water pistol in one end of the hole and have a clear shot through to the other end. Testing it revealed that a nice jet of water would stream through, clearing the sides of the hole and going a full metre or so out the other end.

Having run these satisfactory preliminary tests, I called to Kay, who was about 5 or 6 at the time. ‘Kay – there’s a tiny little grey frog in this hole in the post. Come and look!’

Kay was a lover of creatures great and small. Indeed, she specialised at the time in getting some of the chook feed, mixing it with mud, and baking patty cakes of it in the sun for the hens. She’d then sit in the henhouse and watch the chooks pecking their way into the cakes to get the seeds in them. Occasionally they were so well sunbaked that the chooks would have to wait for rain to dissolve the mud in the cakes, whereupon they would discover a little treat emerging from the wet clay.

Sometimes the chook in the nesting box would lay an egg while she was there. One day, just after an egg was laid and the hen was making the grand announcement to all and sundry that she had achieved this feat, Kay felt the egg under the chook and was surprised to find that it was soft and rubbery, as the shell had not yet hardened.

This has absolutely nothing to do with my main story, but it was the sort of thing Kay did. She understood these things by direct observation. She would also take the stick to the rooster who was always chasing one of the hens with evil intent, having noted the violence of the assault on earlier occasions and wanting to even the score up a bit. I think it’s a girl thing. The boys are cheering the rooster on; the girls are outraged.

To return to my story, Kay immediately rushed over to look in the hole in the post at the little grey frog I had conjured up. She was too short so I got a 4 gallon kerosene tin for her to stand on. (That was part of my cunning plan). While she was getting up on the tin, I stuck my water pistol in the other end of the hole through the post and lined it up.

‘I can’t see anything,’ said Kay.

‘Wait till your eyes get used to the dark. Keep looking.’ I relished the anticipation with wicked glee.

‘I still can’t see it.’

‘You will when I count to three. One, two, three!’

I squeezed the trigger. This was one of my best water pistols, and it worked a treat.

There was a howl of surprise from the kid standing on the kero tin. ‘My eye is all wet!’

‘Maybe it was the frog,’ I said, but my face was a dead giveaway. I was doubled up with mirth and she had seen that look on my face many times before when she had been a party to one of my innocent little games. I don’t know why, but she was very angry. It was a good joke, wasn’t it? No, she wasn’t angry, she was boiling mad. Furious in fact.

‘MUM!!! Denis SHOT me.’

Mum ran out in a flash. ‘He did WHAT?’

Kay had water from the water pistol running down her face on one side, and tears of utter rage running down the other.

‘With his water pistol. Through the hole. He said it was a frog.’

This was a rather confusing charge to have been levelled at me, but with one glance at the post, Mum seemed to have summed up the situation in a flash.

‘Give me the water pistol.’

I handed it over with some reluctance, wishing I had chosen one of my least favourite weapons for the task now that the thrill of the kill was over, and fearing I might never see it again.

She handed it to Kay. ‘Now, squirt him as many times as you like! Don’t you MOVE!’ she commanded me. I thought it wise to keep a straight face at this point, and even try to look a little remorseful, but that was a bit too hard. Given another opportunity with another of my sisters, I'd have done it all again. Kay certainly wouldn't have fallen for the same ruse twice.

She fired that pistol at me to within an inch of its life and I was soaking at the end. Not that I cared on a hot summer day, but some people just have no sense of humour, do they?

"not feeling so lucky now, punk?" 
Illustration by Watto

Mum told us much later in life how she could hardly restrain herself from laughing when she saw the evil thing I’d done, but kept the pose of righteous indignation as a gesture of support for her aggrieved baby girl. Kay would later tell me of the things she intended to do to me in revenge, a conversation that would always start with, ‘One day, when you’re asleep, I’ll….’ And what followed was too fearsome to relate. Many times she would return to this theme, especially when I had done something terrible to her, only the punishment would get worse each time. It’s a wonder I slept at night really.

Even as an adult and when I would stay with her and John at their beautiful house at Camberwell, she would occasionally return to meditating upon how ‘tonight’ was going to be the night (shades of Dexter!), and the revenge would be even more fearful than the ones she’d dream of when she was 5. And those were pretty bad, I can tell you.

As I said, some people just can’t seem to take a joke….

Why wouldn't you trust a face like that?

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Dealing with things

We have to play with the cards we're dealt

In an earlier posting I wrote about the necessity for cancer sufferers, especially those with conditions such as mine that can cause rapid health deterioration, not to be too optimistic about the prospects for new treatments to arrive on their doorstep in time to be any use. Hope is a wonderful thing, but false hope is destructive. But this doesn’t mean that we should be unduly pessimistic. Pessimism brings you down, and mindset is really important, as far as I’m concerned.

Possible new treatments and lack of time raise a question that I want to consider here; if it is unlikely that new research will yield cures or significant remission times for us because we will probably die before an effective new treatment becomes available, where do we go from here?


I have three responses to that.

• To make the most of the newest, most reliable, appropriate treatments that are actually available to patients and not just on the drawing board.
• To look carefully at suggestions in recent research that seem to make sense and are easy for us to apply in the course of our daily lives.

• To be practical about possibilities for us at the stage of life we are in and the form of cancer we have. I can speak only for myself here, for a number of reasons, but you may be able to apply this experience to your own condition.

The triangle, quadrangle or pentangle?
There are at least three people, but I hope for you, as for me, there are more, who shape our lives from the moment we are diagnosed with cancer. These are not necessarily in order of importance. The first three:
  1. Your GP
Choose well. This could be the person who manages not only your remaining life but your death. They also play a key role in acting as your go-between with the oncologist.
  2. Your Oncologist
This is a critical choice, if you have the luxury of choice. More on this later. Try to make sure your oncologist and your GP have good contact and know what each other is doing in regard to the management of your condition.
  3. You
Make sure you don’t take yourself out of the equation. Don’t underestimate the importance of your opinion in shaping decisions by your GP or your oncologist as to treatment and medication.

Other important people
I have put these at 4 and 5 because not everyone is fortunate enough to have them, though their roles may be critical.
  4. Your carer(s)
  I really hope you have someone beside you who can help you manage your condition. Not everyone does, but I have to say that if you do, you are fortunate, as I am. This person, if just one, may have to take on a role that is completely different from anything in your past.
   You are both/all going to need to adjust, and there may be huge adjustments to make. In some ways your new condition may be harder for them to adjust to than you. Not everyone can adapt easily. Huge responsibilities that could easily affect everything about your life may suddenly fall to them.
   The person who cares for you may be the most important of all in keeping you on an even keel and monitoring your state of health, organising appointments, managing your medications and waiting, waiting, waiting with you in various places connected with your treatment. 
   And remember: what was private in your life may suddenly become a matter of much more public information that is needed by a lot of people, some who don’t even know you but are part of managing your condition.
  5. Hospital staff
  It’s very likely that your treatment will involve being either an outpatient or inpatient in a hospital. Conditions vary enormously and I can’t really say what your experience is or will be, but I have found hospital staff to be incredibly competent, caring and helpful. They will be able to tell you a range of services that may be available to you. Ask them.

Happy news

          A conjunction of circumstances has relieved us of the weight of trying to find the shortfall in finances for the fourth dose of Avastin. 

         Our dear friend Trish the Dish, no doubt ably assisted by Gina Ballerina (these are Tracey’s nicknames for them!) continued to raise money for this purpose over past weeks – months, actually. 

         At the same time, Tracey discussed our case with senior people from our health fund – a fund which, is has to be said, was not very helpful at all initially in covering the yawning gap between what we paid out for Avastin in the past three months and what they were offering – and they have agreed that the fund will cover, ex gratia, the extra expense for next month’s treatment beyond that raised by the recent efforts. 

         This means that after this final payment next week, there should be no more payments to the pharmaceutical company for further monthly doses, as the company has a policy of providing further treatments beyond the fourth one without charge. 

         Thus we can enjoy Christmas more than we could have otherwise. We can only thank all those concerned, and those who already helped us financially with earlier payments. I think it has been the hardest thing in my life to accept financial help, but without it… well, let’s just say that Christmas would have been somewhat different this year. 


         Thank you, Trish and Gina. Thank you, Tracey. Thank you, MBF. Thank you, Bruce Watson and Joan Relke and Carl Merton for donating prizes. Thank you, family and friends and all those others who contributed, not forgetting those friends who did earlier fundraising, Laura and Wendy Cannon and Carol Elder and the ADMS.  Thank you all.

The enraged prima donna

This photo is of the wedding of my sister Jan to Ken Stockwell. I referred to them after marriage in another story, and Jan wrote on her impressions of Christmas at Taragoola, as did Lyn, who’s the senior bridesmaid on the left. I’ll have more to write about Ken later, as he made a great impact on our lives. But I’m using this photo to tell a story about my youngest sister, Kay, who is the sweet little junior bridesmaid on the right in this picture.

Kay fancied herself as a bit of a singer when she was about 5 or so, and would perform without much persuasion for family and visitors. This was usually downstairs, under our house in the cool of the afternoon and after milking was over. It was a great time when we could all relax.

On this particular afternoon, Kay had an audience of Aunty Lucy, Uncle Frank, and our cousins, Beth and Gay Brown, apart from Mum and Dad and us siblings and one or two others. Gay is the other junior bridesmaid in the wedding photo.

Kay would have been about this age when this event took place.

Kay’s favourite song to sing for an extended audience was Rock Island Line. The chorus goes like this:

Down the rock island line is a mighty good road

Oh the rock island line is the road to ride

The rock island line is a mighty good road

Well if you want to ride you gotta ride it like you find it

Get your ticket at the station for the rock island line.

http://www.youtube.com/watch?v=tf-3v2W_9Yc

The only problem for Kay was that there was a fair chance she would get it confused toward the end.  If you watch this screamer of a version of it on youtube – hang in there till the end, the visual alone is worth it - you’ll see how fraught with danger this is for a 5 year old whose confidence might just have outstripped by a fraction her memory of how the song ended. Kay, let me add, was excellent at many things later in life, such as writing, painting, and a nationally known horticulturalist, but singing was one of her lesser talents, let’s say.

So, the concert began, and sadly, towards what should have been the end, Kay found herself going into an infinite chorus loop, forgetting where the stopping point was. After a while, the inevitable happened. Beth Brown, sitting down at the back, started to giggle. Beth would have been about 10 at the time.

Kay was having none of that. She glowered furiously at Beth, and continued with the song, but unfortunately was still in the infinite loop. Everyone tried to contain themselves, all except Uncle Frank who was chortling like crazy, sitting on an end seat down the centre aisle of the performance area. Meanwhile, Bethy Brown down at the back continued to giggle – very quietly, it must be said, but visibly. And Kay had a keen eye open for any critics of her performance. Like Churchill and trailing prepositions, it was something up with which she would not put.

Kay was now deeply offended by this discourtesy, her fury directed particularly at Beth, whom she regarded as the originator of the barely repressed chortling and the indignity she was suffering. She stopped her song, and marched down the centre aisle, heading for Beth, who she was going to teach a lesson in manners.

On the way down, as she walked past the grinning Uncle Frank, she clipped his ear good and hard, much to the amusement of Aunty Lucy – and of Uncle Frank, who I thought was going to fall off his seat with laughter. Fortunately for him, he was not the main target, just someone who was in a great position to be disciplined on the way. Beth, still giggling like mad and seeing Kay bearing down upon her not unlike the train in Rock Island Line, jumped out of her seat and took off to parts unknown, at least by Kay, thus saving herself from near certain strangulation by the prima donna. Or worse, the Kay Death Stare, followed by immediate throttling.

The performance thus came to an abrupt conclusion with the singer refusing to perform for an audience not appreciating her talents sufficiently, and it was only several of Aunty Lucy’s fairy cakes that changed Kay from a seething, simmering five year old bearing a very large chip on her shoulder back to her usual angelic self. Beth did not return for quite some time after – until she was sure it was safe to do so.

But if you were in the audience that day you would never forget the sight of Kay explaining to the audience in no uncertain terms as she swept down the centre aisle what was expected of them as to their behaviour whenever she was performing for them. By the way, she loved Uncle Frank dearly and was always his favourite – but he was not hers on that day!

Kay, a little older, not performing Rock Island Line

FOOTNOTE TO THIS STORY: When she read this incident, my sister Lyn reminded me of something I had completely forgotten about. In her words: 


"I was amused at the piece on Kay getting stuck on the Rock Island Line song, but you didn't use the punch line?....  I won't forget the glitter in those eyes as she stalked off muttering 'that bloody Beth Brown'!"


I wish I'd remembered that before I published the story! Thanks, Lyn!
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Isn't it amazing?

Isn't it amazing? I joined Twitter quite a while ago, believing that when I did, I would quickly get the hang of it. As a person who rarely uses my mobile phone, which is years out of date anyway, there didn't seem much point to Twitter for me. 

But over the last few weeks, I’ve tweeted my blog on occasions, and sat back and waited. This probably isn't a proactive sort of tweetish thing to do, but then I don’t really know how to be proactive on Twitter.

Hey but guess what? In the last couple of days, suddenly I’ve developed a few admirers.... there’s Helena and Elizabeth, and Aida and Joanne, and they have one thing in common, apart from desperately wanting to be my Twitter friend and ‘following’ me on Twitter. They’re all in about their 20s-30s, all ladies, from places like Russia, and by sheer coincidence it seems, they have sent me pictures where they've forgotten to put all their clothes on. How embarrassed would they be to know that! They've even made movies of themselves just for me. I haven't looked at them yet, but I’m expecting they'll be nicely dressed in their national costume, singing traditional songs perhaps.

They also want to chat with me! Twitter must be a great way to make friends. I might do that. I’ll tell them all about dichloroacetate in glioblastoma research and new cancer treatments, and stuff like that. They’ll be fascinated, I’m sure.

Footnote: since beginning this posting I find that two more nice new women have become followers of my blog and want to give me their website addresses and phone numbers! But I have to say, there really are some very careless women in Russia and some other foreign countries, because, like the other amazingly attractive girls in their photos, they appear to have forgotten to dress.

Or maybe they are very poor and can't afford clothes; just a camera, a computer, an internet connection, and nice hairdos and makeup.

Oh well, it’s nice to feel so wanted…. I’ll let you know what their movies are like, and how our chats go. If the pictures of them in national costume are good, I'll post some of them here for you. I'm not a prude, but I'm sure they wouldn't want me to put here some of the ones they sent me!

Thinking about current cancer research

There is an enormous amount of research on understanding and developing new treatments for brain tumours. To keep things simple for myself in writing this, I have referred to a few of the most recent below in the area of brain tumours. This is not a review of that research – I don’t have the medical background for that, and what I've mentioned is just the tiniest tip of the iceberg. 

   The point I want to make here is that much of this research refers to trials and preliminary data, often on a small group of subjects and often not on humans. This research can indicate exciting prospects for the future, but realistically, even if new products were developed, they would probably take 5-10 years before they have any relevance for those like myself with GlioBlastoma Multiforme tumours (GBM). Most of us don't have that long.

   As well, the research that can seem so exciting often needs a more restrained eye cast upon it than that of the researchers themselves. For example, the article referred to below, reviewing current preliminary research on Dichloroacetate treatment, is tempered by more sober (and public) assessments:

http://scienceblogs.com/insolence/2010/05/dichloroacetate_dca_and_cancer_deja_vu_a.php

(If that doesn't work because it's too long, this should do the same job - or paste the URL into a new window.)

http://tinyurl.com/38r8zx8

   I've spent a good part of my life in research, and have learned how to handle a range of research data, even in fields in which I have no expertise, such as anti-angiogenesis and GBMs. I think the science blog above warns us not to get carried away with over-optimism that new research has immediate prospects for the vast majority of people affected. Hope should not outweigh the reality of lead times and the bureaucratic necessities in getting a relatively safe new drug on the market. We may well hear much more about Dichloroacetate (DCA), but the jury is certainly still out on how effective it is going to be.

I have benefited from Avastin research in the 1990s and 2000s. Others will be the main beneficiaries of the current research in the 2010s, and I do wish them the very best of luck. New things are always on the horizon, but it is a mistake to assume that the horizon is as close as it sometimes looks.

Now, only read from here on if you want to follow up on that research yourself.

On 12 May 2010, an article appeared in New Scientist called 'Cancer's sweet tooth becomes a target'. [SEE Note 1] On the same day, an article appeared on Sci Trans Med entitled 'Metabolic Modulation of Glioblastoma with Dichloroacetate', which introduces research into DCA for GlioBlastoma Tumours. (GBM). I note that a new study less than a week ago from the same source extends this anti-angiogenesis research. "News from the Brain: The GPR124 Orphan Receptor Directs Brain-Specific Angiogenesis." Elisabetta Dejana and Daniel Nyqvist - Sci Transl Med 17 November 2010: Vol. 2, Issue 58, p. 58ps53

However, as mentioned above, blog responses from those who are often more experienced researchers and medical practitioners tend to put the brakes on over-enthusiasm. 

[Note 1] If you want to read the full article, you will have to subscribe to New Scientist if you don't already have a subscription, but if you're only interested in this article, then it's probably not worth doing for this article alone. This applies to most scholarly and research articles.

The abstract says this:

A DRUG that blocks the way cancer cells generate enphergy could lead to a new class of cancer treatments.

The first human trial of the drug, published this week, is reported to have extended the lives of four people with an aggressive form of brain cancer.

The result is preliminary, but it suggests that, as an approach, tackling "cancer metabolism" is sound. "We are still a long way from a treatment, but this opens the window on drugs that target cancer metabolism," says Evangelos Michelakis of the University of Alberta in Edmonton, Canada, who led the trial.

Elsewhere, researchers have started experimenting with a host of other molecules that might target cancer metabolism. "It's about identifying which target is best," says Lewis Cantley of Harvard Medical School in Boston, Massachusetts, whose company Agios Pharmaceuticals is screening for such targets.

http://tinyurl.com/38g55et

Laughter IS the best medicine!

An old saying... where does it come from? the Reader's Digest, I fear... but you have to laugh sometimes.


Picture this. I am lying on the bed with stomach exposed, and Tracey begins the first of the Clexane injections for the day. Just after insertion of the needle, Christian walks in. 


'There's a typo in your blog' he says, 'or was it intentional?' and he told us what it was. You try spotting it.

I burst out laughing, which is not a great idea when you're being injected with 60 mls of Clexane. Tracey was desperately trying to keep the needle in place, but it's a bit of a challenge with a quickly moving jelly belly target. She did a great job considering she was trying not to laugh too.

The funny thing is, while sometimes these injections can hurt a bit (if you're an injection wimp as I am), I never felt a thing while laughing so much! However, given the 'sewing machine needle' effect on my belly, I don't recommend it as a counter to pain.... :)

Taragoola and Christmas time - Den's story

Den's story

So this is the third little story of the Taragoola trilogy - or maybe a triptych would describe what we've tried to do more accurately. It’s wonderful but not surprising that if we had written independently, we would have mentioned so many of the same things that struck us about Christmas time and going to the Jensons each year – yet inevitably there's that clear personal window that Jan, Lyn and I looked through when we went to Taragoola.

A farm holiday? For farm kids?

The Jensons were farmers; so were we. It may seem strange that we kids went for holidays out there, to another mixed dairy farm, and yet everything was so different. Maybe it was the river that was a big part of this. We had a creek running right through our place and practically none of it would have been over our head in depth, and the fish were very tiny – many varieties of native fish no bigger than your finger that probably and sadly are now extinct. 


But the Boyne River could be deep and wide, and eventually flowed into the sea. It had shoals of mullet in it, and other fish, and large turtles, and in flood times could be a wide and dangerous piece of water. All this made holidays at Taragoola different, and special.

Then of course, there were the Jensons themselves, Uncle Siv and Aunty Daisy (one of Dad's seven older sisters) and their sons, so lovingly described by my sisters, related to but not the same family as the Jensons who played a part in other stories about the Calliope dances. 


The Nordic connection


Uncle Siv surely came from Viking stock and he still retained a hint of the accent or pronunciation idiosyncrasies of his Nordic ancestors – the word we will all remember was how he said ‘Byoot-ee-ful’. 
‘They was beaut-ee-ful, Joan – Jan – June….’ 
It was wonderful that there were so many byooteeful things in his life, the grey-haired patriarch with those Scandinavian blue eyes and a wicked glint in them. Oh yes, they were wicked -  I don't know how much voolee-vooing he did in France during WW1 when he was 17, but he could certainly parlee-voo quite a bit - and I'll wager he didn't learn it from les hommes.


Their sons Mervyn and Neville were not that much younger than our parents – because when Mum was posted to Riverston school when she first started teaching there at the age of about 18, she taught Neville, so he was probably eight or so years younger than she. Mum boarded with Uncle Siv and Aunty Daisy as a teacher and that’s how she met Dad in the first place. Mervyn and Neville then treated us like much younger siblings, teasing us unmercifully and indulging us in ways one’s peers don’t.

"No moon landings!"

I guess what I remember most about those tropical Christmas nights was Uncle Siv’s tales, and some of his funny ideas.

‘They’ll never land a man on the moon,’ he would say.
‘Maybe they will,’ someone would bravely venture.
‘No!’ he would declare with total conviction. ‘And do you know why?’
He'd roll a smoke and light it.

‘Because it’s impossible,’ he would add, ‘And you know why that is?’
He'd draw in deeply as the tobacco smoke lazily curled out the wide-open windows.

‘Because….’ He would pause for maximum effect, ‘.... it ain't natcheral’.

He’d pause again, staring into space, to have a good drag on his ‘natcheral’ cigarette.

‘It’s just not natural.’…. And later he’d throw the natcheral dumper out into the garden through the nacheral window.  ‘It can’t be done.’

That was the end of the matter.  You can’t argue with impeccable logic like that.

The infinitely jumping frog


An even better one that we could have differing opinions on was this doozy.

‘Jannie. Lindy. Denny. I’ve got a puzzle for you.’

Will it be the frog one? We had a fair idea it might be.

‘Now think about this,’ he would say. ‘There’s this frog in a ring….’

It's going to be the frog one.

‘How big’s the ring?’

‘It’s four feet across.’ (About a metre, for those of you who are imperially challenged.)

‘The frog’s right in the middle.’

‘So two feet from the outside.’

‘Yes. Good girl, Lindy.’

‘In any direction,’ adds Jan.

Uncle Siv contemplates that for a moment. He tricks us when he can and knows we are smart enough to get him back if the opportunity presents itself. Jan's comment makes him consider circle radii and diameters.
‘Yes…. That’s right.’

I want to ask if it’s a green frog like the one down the hole in the post at home, but decide not to complicate matters more than they will be in about 20 seconds.

‘Now. The frog jumps half the distance to the edge of the ring.’

My turn to add to the conversation. ‘One foot.’

‘He uses all his feet,’ cackles Uncle Siv and we all laugh.

‘Yes, one foot from the centre. The frog jumps again. He’s a bit tired, so he only jumps half as far.’

‘Six inches,’ we all say.

‘How many jumps so far?’

‘Two.’ I get in first. Anyone who calls me a mug’s no fool, as Erwin Holzheimer used to say.

‘He jumps again. Only half as far as the last time again.’

Three inches left to go before he gets to the edge. He’s had three jumps. We are in perfect agreement.

‘Right. Now, here’s the question. He keeps jumping, but he's running out of steam. So, he only jumps half as far as the last jump each time. How many jumps will it take before the frog gets out?’

This is the point at which things start to get a bit messy. 
‘He’ll never get out,’ we say. ‘But he can jump as many jumps as he likes,’ says Uncle Siv, ‘So he’s got to get out sometime!’

We argue it round and round, but infinity always gets in the way.

Then Uncle Siv ends the argument by telling us, ‘When George Dart was boarding with us, I asked him about this.’ (George Dart was one of a succession of teachers who took Mum’s place.) 
Apparently Uncle Siv and George debated the question for quite some time, with George writing down a set of mathematical calculations ending in larger and larger numbers after the decimal point, in order to introduce Uncle Siv to notions of infinitely smaller froggie jumps within the circle.

But I’m pretty sure that at last George realised there was no point trying to convince Uncle Siv that Freddo was never going to make it out of that circle no matter how close he got, and, in desperation, had finally recanted. We know this because Uncle Siv always ended this debate with ‘George worked it out. He found out that if you did the sums enough, the frog would eventually get out of there.’

I strongly suspect it was George who wanted to get out of there, not the frog, and found the only way to do so. Had he not been a teacher, he would have made a good economist, that's for sure.

Boy stuff


The thing that fascinated me about Christmas at the Jensons, or just being at their place anytime, was that they always had mechanical devices that my father never used on our place. We had a horse and sulky [buggy] in the earliest days, they had utes, and tractors with steel spiked back wheels instead of rubber tyres. To state the bleedin’ obvious, the tractor wasn’t designed to go on roads or car tracks, but the spikes must have done a damn fine job of aerating the rich river-flat soil with deep puncture marks into the ground. I got to drive theirs sometimes and loved it, even if it was just on the straight bit of grass beside the car tracks up to the dairy.

This is an antique tractor from the 30s. The Jensons' was much more upmarket and super-cool,
but you can see how the spiked wheels worked. http://tinyurl.com/2d3e5k4

Mantle lamps


At night they would use a pressure lamp for the dining room instead of what we had at home – we had plain kerosene lamps that bathed the room in a soft yellow glow. The pressure lamp had a mantle, and the fuel under pressure was atomised on to the delicate web-like mantle inside, creating a brilliant white light that attracted moths and beetles for miles. The sound of the pressure lamp was a distinctive low roar or hiss. It was exciting. To us, it sounded and smelt of warm summer nights by the river.

Modern pressure lamp (camping!) Dual mantle

Not really that modern, this design!

Electric lights and Christmas beetles


At Christmas time, they also strung up real electric lights in the house. Of course, as in our case for a lot of the 1950s, there was no power grid to service rural properties, so if you were going to have anything electric, you made your own.


Mervyn rigged up a DC lighting system running off 12 volt batteries that were recharged by a generator. It was magic to have real electric lights for Christmas, and the insects loved them just as much as they did the pressure lamplight. When you were eating, you had to watch out for beetles or moths that might have suicided in your gravy, or in your Christmas pudding with the silver sixpences in it. Christmas beetles taste foul, I can tell you, even with Aunty Daisy’s custard.

Magic radios


The other thing that fascinated me was that Mervyn and Neville each had portable transistor radios. Sometimes they would have them on at each end of the same room, and as I walked between them, the sound would seemingly pass through my head and at some point seem to come from right in the middle of my brain. You aren’t impressed? You have studio quality ambient noise cancelling wireless Senheisser headphones? Well, bully for you… so do I. But in the 50s, the sheer wanton luxury of a portable transistor radio at each end of the room was just as magical, so there.

1960s portable trannie. (Jan had a tiny Transistor 8 in a leather case, that she paid a fortune for!)

The one-holer on the river bank


The penultimate thing I’ll mention was the one-holer dunny at the Jensons’ place. This was an amazing piece of sanitation engineering. If you opened the lid and looked in, which you always did, of course, the hole simply descended into blackness. It was so deep I was fairly sure that there was lava at the bottom of it. If it wasn’t lava, well…. let’s not explore that too deeply. I just didn’t think it was humanly possible to dig a hole that deep without bringing in Caltex or Shell. 

It never needed maintenance, it didn’t smell too bad, but you wouldn’t have wanted to drop a torch down there, or got sucked in yourself as you sat there contemplating the mysteries of the universe. Nothing in the caverns of Lord of the Rings would prepare you for a fate like that. Ecologically, it was probably nearly perfect. Scary for a kid, but perfect in its way.


Party lines


And, of course, they had the party-line telephone, another piece of magic that Jan has described already. A real telephone that you could speak to people in other houses round about the river and beyond. 

Each house had its own allotted ring combo, so if you wanted to ring Jean Stark across the river, you'd do a sort of Morse Code short-short-long-short turn of the ringer handle and she'd know someone was calling her. Confusions, accidental or deliberate, often led to multiple conversations between A, B, and C, which could be even better than two-way, except if A and B wanted to gossip about C or about something that C shouldn't hear. Party line conversations could be fraught with danger - though mostly it was just good fun, and could save a life in an accident.


Neville's death


Tragically, the phone didn't save Neville's life, when the river bank close to where he was ploughing gave way, and the tractor plunged fifteen metres down the high crumbling bank to the water's edge below. That was heart-breaking for us all and would have happened in about 1969. Nev, the gentlest soul in all the world, had a pretty good voice and I'll never forget him sitting there milking by hand, head tilted to one side, in a world of his own, and singing the Slim Whitman classic, China Doll.


Copy and paste the link below into a new page in your browser. I tried to embed it here but it didn't work. It is so evocative it will make my sisters cry when they hear it. This is the 50s and it is the country, don't forget!!
http://www.youtube.com/watch?v=-fqvyz8dhG4

Things unsaid


But let's smile again because no-one should grieve forever. There are a million things I might have written about, including the snottaberries and the Buffs, but you’ve probably had enough by now. It was a magical world, with magical people, with those blue, blue mountains as a backdrop, and how lucky we were as kids to experience it.

Our mother's painting of the old steam engine, the Boyne and the mountains

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