PPPS

That was meant to be CTFD

I'm getting mixed with RTFM - read the manual

Night rant

Is anyone else out there like me and forgets their password every time they want to sign in?  I think I am too old for this cybo-techno stuff.

Anyway, here I am again, supposedly making toast to fill up on so I can go back to sleep, but, hey, why not just feed the insomnia bug some more?

Not much I can say really, except to observe that there are times when one feels a bit more "unhinged" than others, and I'm right there right now.

Maybe it will be better in the morning.  Time can only tell.

There are many songs and other things that would sum this up.  Ummmmm......

Dave Dobbyn "Loyal" would be apposite (did I spell that right?) Did I get the right word?

What else?  I need toast to help me think.

Film title?  "Love and other catastrophes" (Aussie indie film - v.good - I think Frances O'Connor was in it prior to her turn as Fanny Price in the Rozema production of Mansfield Park)

...the toast is good....

....burgen with butter and honey....

REM [losing my] religion.

A misquoted line from Bridget Jones' Diary (tha movie) - something like "why is it that when one part of your life starts going well, another falls spectacularly apart?"

An exaggeration, I hope.

The Whitlams "...yeah and all my friends are f*&k-ups, but they're fun to have around...."

Well, not all of them are, but the most fun ones are - I can relate.

Cheesy, but true, Elton John "Sad songs say so much"

Best advice of the week: CTFM - calm down.....

Maybe someone can tell me how to do a singing post, then you could have the sound effects.  No I don't mean me, I mean a soundbite from somebody really amazing, like.....

Adam Lambert

Natalie Merchant

Over the Rhine

Jill

Johnny

Freddie

Nina

Itchy

Fifi

Archie

etc....

NOT Bob, or Kris, or Johnny C (now I know I'll be unpopular on at least 2 out of 3 of those, but hey, I'm entitled to my opinion that in spite of their varying levels of fame, NONE of them can sing!!!!) Well, OK, maybe the last one can, but I still don't like him much.  Ummm, not even sure about that.  Sad old git though.

Time to retire once more.

Robert Scott (The Bats, or maybe this one is the Magicheads) "O Lord grant me sleep tonight yeah, I don't wanna lie here long...."

Bye....

PS Kiwi music is waaaaayyyy underrated. Get into some more of it.

PPS  SJD Dayglo Spectres "Oh IIIIIIIIIIIIIIIIIIIII..... I don't caaaaaaaaaaaaaaaaaare, if I lose my waaaaaaaaaaaaaaaaaaaaaaaaaaay...."

Only problem is, I do actually.

Yes, I am too serious.  Help me Rhonda, help help me Rhonda.... (who IS Rhonda, by the way?)

Definitely time to stop.

I'm going, really I am....

Here I am again

Wow, this could get addictive

A small person is singing in the bath, having done one amazing swim lesson - full lenghs of tha pool like a little mermaid if you please.

Her Dad would've been proud...

his turn to take her next week....

I'm on a roll

I haven't posted for so long why not do some more?  As a very good SJD song goes "...it's 4am and there's a ....[something] in side my head.... it's 5am and there's an orchestra for hire inside my head...] anyway , the idea is, I'm not alone in my insomnia.  Great music from artists with authentic souls is a lovely companion in this life.

I don't why it is that emotional turmoil, or the storms of life or whatever, seem to be what makes me want to write.  I guess it's just an outlet for "angst". This last week has certainly been an emotional rollercoaster for me, as those close to me know only too well, having been ear-bashed, ranted at, cried upon and otherwise witnesses of.  It reminds me just how good a bunch of fantastic friends, loving family and generous, compassionate work colleagues are in the gifts of life.  Sometimes it takes some real crap going on to discover how wonderful love in its many forms can be.  It's that paradox that when I experience suffering, I often also experience tremendous human goodness to help me along.  So while I'd rather not have the pain, I am glad for what else it tends to give me as part of the package.

Having said that, I find it very hard still to hold this in tension with the sorts of pain I see in the world that do not appear to be accompanied by any shred of that balancing goodness to help the sufferers along.  The list is endless, obvious and up for eternal ideological and philosophical debate.  But hey, this is a blog, so I don't have to be reasonable, reasoned or consistent about it.  So I'm just going to name a few of my pet hates.

1. Imprisonment: the way we as a society (at least in this country, and many others) continue to lock up increasing numbers of the most broken and damaged people as a way of punishing them for the things they have done to us out of the almost universally hellish evils that have been visited upon them since the day they arrived on the planet.  Through various things that put them in the most disadvantaged, marginalised, abused, groups, we then punish them even more for being victims of various forms of evil in the first place.  Yes, I know there are a few people who have a pretty happy life and still choose to go off and do bad things, and a few others who arguably "don't choose" because they are psychopaths and are just wired that way.

Having thought long and hard about this for many years, I have come to the conclusion that there is a place for imprisonment for a very small number of people, for the purposes of containment to protect us.  But in a country the size of ours, it might be about 1% of all the people we imprison.  The rest we are systematically failing to respond to in any effective way.  Doesn't make them behave like we want them to (almost always makes them worse), doesn't fix anything, costs us all a bloody fortune that could be so much better spent just about anywhere else.  It's a criminal injustice system.  I long for a time when those in power are ready to try for a new way out of  this form of collective madness.

2. Suicide: Once again, there may be exceptions, but in general, a person who has come to a point of deciding to take their own life, or trying and succeeding, or trying and failing, is someone who is experiencing that level of pain in such a way that they are cut off from the love that can bring them back from despair.  What happens to a person that they feel so cut off from love and comfort and support in suffering?  How does any one person get so isolated?  Yes, many reasons.  No pat answers.  But once again, the fact that this can happen to any one individual in a world full of people and institutions who supposedly care, love and help is a such a sad thing.

3. War: Collectivised intent to visit violence on other people, in ways that are undiscriminating.  Decisions to exercise violence for some higher cause.  Violence to counteract others' violence.  State sanctioned violence for which the justification is trying to bring peace in a world where others choose violence.  Yep I know all the arguments, a just war, a holy war, a war against terror, a war for freedom.  It's all madness.  The end doesn't justify the means.  If we choose violence as a way to try and contain, stop or prevent other violence in the world, how are we any better?  It's our failure to find other ways and do the work of other ways to bring peace.

4. Poverty: The madness of plenty and overabundance for a small minority of the world's human inhabitants; the stress of shortage and inadequate provision for a much larger proportion of people, and the completely inhumane situation of the remaining millions who needlessly starve, get ill and die from diseases that could easily be cured etc.

So I'm saying nothing new.  The fact I am in a position to sit here and write this blog demonstrates that I am one of the favoured, complicit minority.  An uncomfortable place to be conscience wise.  What to do.

There's no pat answer to any of it.

Just trying each day really to be a push in the "good" direction, even though, being human, and even with the best of intentions I might actually mess up big time today.

Mum buys a new vacuum cleaner

Mum buys a new vacuum cleaner

 

As a consumer of goods and services, there are advantages in having a daughter with an obvious disability in the voracious retail marketplace.

 

I was looking for a new vacuum cleaner on the weekend.  Daughter in tow, I visited several different stores: Harvey Norman; Briscoes; Noel Leeming.  They all had vacuum cleaners.  They all seemed to have different brands of vacuum cleaner.  The prices ranged from $150 to $1,000.  They had many different features.

 

As a consumer, I was bamboozled.  And time was short, with an 8 year old girl in attendance who would prefer to spend all our time (and my money) in toy shops, thank you very much.  What to do.

 

Then I popped into LV Martin.  The very nice elderly store gentleman sauntered over, took a look at me, took a look at my daughter, and asked if he could help.  I told him I wanted a vacuum cleaner, and I didn’t know what to buy.  He had vacuum cleaners.  He could have sold me one of his quite easily.  I could not have told the real difference from the innumerable other vacuum cleaners I’d seen in other stores.

 

Instead, he pointed across the carpark to Godfreys, which basically only sells vacuum cleaners, and told me to get one there. He said I would do better to buy one from them than to buy one of the ones he had on offer.  He told me who to ask for over there for the best advice and assistance.

 

I followed his advice, and bought my new vacuum cleaner from the store that specialises in vacuum cleaners.  I told them why I had come to them, the name of the person who had sent me to them, and the store he was from.

 

You may wonder what this has to do with having a daughter with one leg.  I have observed that retailers sometimes behave differently around me as a consumer when she is with me.  Some take pity; some try and empathise.  They say and do things they would not otherwise do with me as a customer.  They somehow see that life has thrown me a bit of a curve ball as a mum, and they want to help me.  Actually, mostly they want to do something to help her.  At least, that seems to be their motivation to me.

 

I imagine that to some bosses, the man at L V Martin would be seen as material for a severe telling off, sending a customer away to someone else when he could have “gone for the kill”, made the sale and taken my money for his company.

 

From my perspective as a consumer, he may not have sold me a vacuum cleaner that day, but I am far more likely to go back to his store to get something else from him that other stores also sell, such as a washing machine, a dryer or a toaster.  His disinterested action has created goodwill in me as a consumer, and a sense of trust that he (and by definition) his company, is not out to exploit me, and puts my needs as a consumer before his need to sell a product.

 

Who knows how the other retailer responds to the information that they got a referral from a “competitor”.  Hopefully to reciprocate by referring customers back to him.  If so, then it’s a very effective marketing strategy by the man from L V Martin.

 

And good for consumers, as they navigate the shark infested waters of competitive retail marketing.

 

Tell us the truth

I’ve realised you can say anything you like on a blog. Whether it’s wise to do so is another matter. Having read the article in the newspaper this weekend on all the privacy implications, it’s tempting to zip up forever.

I can’t zip up though about the latest piece of news on the Wellington Paediatric Oncology Service. Once again we are told that the oncology staff have resigned. That’s four down in 18 months. Something is wrong. For those of us who are parents of children living with cancer, how do we get to the truth of the matter?

“Numbers ‘too low’ for child cancer unit” the headline says. Read the article in detail and you get the impression that Capital and Coast DHB can’t maintain the service because there are not enough children being diagnosed in the region that Wellington covers. We are told that Auckland is the only place in the country that can provide a full tertiary paediatric oncology service. We are left with the message that like Dunedin and Waikato before it, the Wellington paediatric oncology service is inevitably going to become a secondary service only.

The vast majority of us are left to draw our own conclusions from such incomplete information “sound bites” as are provided by mainstream media. It hardly gets us any closer to a full understanding of the truth of why Wellington is repeatedly failing to sustain its tertiary level paediatric oncology service. We must dig a little deeper.

Parents like us are privy to a little more information than most. We were emailed a letter from the Chief Executive of CCDHB, which amongst the other expressions of condolence and soothing words of diplomacy, said, most significantly I think “…one of the things this [resignation] has highlighted is just how challenging it is to provide a comprehensive service such as Paediatric Oncology in a hospital the size of Wellington.” This suggests that the reason the latest clinicians have resigned is because Wellington Hospital is too small to provide a service they can work in. Unpack that one if you will.

The other significant thing he said was “[w]e are working with both the Ministry of Health and the Paediatric Oncology Steering Group to once and for all attempt to implement a model which is clinically safe and meets the needs of the patient and family”. This suggests three things: first, that CCDHB, the Ministry and the Steering Group are the ones with the power to make the decisions about the future of the service; second, that clinical safety is being compromised in Wellington; and thirdly, there is an acknowledgment that child cancer patients and their families’ needs are not being met.

So much for the official story. It does not get us much nearer the truth. I have heard plenty of other angles on this story, some anecdotal, some less so. Who knows if any or all or them are true, or just opinion. Here are some of them: the CCDHB management is fundamentally incompetent; the Board has consistently failed to ensure that management implements decisions it has made; various parts of the hospital are fighting over scarce resources and undermining the access of paediatric oncology to services it needs to provide clinical safety for its child cancer patients; paediatricians are opposed to maintaining a tertiary paediatric oncology service in Wellington because it is resource hungry and if it goes they will get more access to services for the kids they treat; previous paediatric oncologists have left in frustration at the ongoing lack of resourcing in terms of access to timely CT scans, operating theatre time, specialised oncology nursing staff etc, and being left isolated and clinically unsupported; according to British models of tertiary paediatric oncology provision, the Wellington region does not have sufficient numbers of cases to warrant the investment of resources required in a tertiary paediatric oncology service, nor does it have sufficient cases to enable oncologists in the service to see sufficient volume and range of cases to maintain and develop clinical professional development and expertise. One more thing I’ve heard: that a lot of this is about politics and power plays – Christchurch and Auckland seeking to grab a bigger share of the resources by undermining Wellington’s tertiary status.

How do we find out the truth? Is it in what people say, or what they do?

How do we know why paediatric oncologists continue to resign in Wellington, when they are never permitted to tell us why (presumably because of the confidentiality clauses in their contracts – but then, I don’t know if this is the case or some other reason). We have to guess, and guessing is not a basis for confidence and acceptance of what is happening.

How do we know what the real issues are, if we are not party to the discussions that go on amongst health officials and DHB staff who make these decisions? Yes, we can request information under the OIA Act, but not everything is written down, and for very good reason. Officials do not want us to know the whole truth, if it might embarrass them or present them, their behaviour, their actions, their decisions in an unfavourable light. I should know, having worked in that game for years. Noone is afraid of giving out information of itself – it is the consequences of doing so in terms of political sensitivity, or how the information may be construed, that is what prevents us from telling the truth.

I have no doubt that most (if not all) of the people involved in this decision making process are genuine in their belief that they are working towards what is best for children with cancer and their families. Yet that is not their only concern. They have competing interests they are trying to juggle – in the DHB, demands for resources that compete with paediatric oncology’s needs for resources; in the Steering Group, demands for resources in other tertiary paediatric oncology services that compete with the Wellington services’ needs; in the Ministry, demands for resources across the health sector that compete with Wellington paediatric oncology’s need for resources. Demands for clinicians; your job or my job; your place or mine? So it goes on. This is obvious.

Back to the children and the parents who are directly affected. We cannot be objective. We feel angry, fearful, confused, bewildered, betrayed, anxious, exhausted and cynical. Our trust has been broken once again. Our faith has been undermined once again. For us, this is no battle for $ and resources – it is a battle of life and death for that which is most precious to us – a child we love. Those who can and will make these decisions about what kind of a paediatric oncology service we get and will get, and where we will get it owe it to us to be honest with us about what is going on. If the service is not sustainable in Wellington, let’s stop mucking about and start shipping our kids to Auckland or Christchurch permanently, and to hell with whether it destroys our family networks, so long as it gives us the best chance of saving each individual life. Or lets be honest if our DHB and/or our government is making trade offs with funding which means we won’t provide the world’s best paediatric oncology that can be offered, and that as a result, x number of children will die. It’s brutal, but that is the reality we face as parents, and no amount of mealy mouthed assurances will take that away.

For myself, I am grateful every single day that my daughter is alive. If she had been diagnosed with cancer and living in most other countries in the world, she would be dead now. The impact of what is happening with the Wellington service is minor for her, compared to many others. In her case, she has not had any proper follow up for 18 months. We are playing Russian roulette with the odds that she won’t relapse. The chance is relatively minor, but not non existent. If she does, she’s as good as dead. If she does, it is not likely to be picked up in time. And her ongoing effects of chemo are not being monitored. So it’s far from ideal, but it could be worse.

I hope when we meet with the health honchos in two weeks they will be honest, and tell us the truth. We may not like it, but at least then we can get on with doing what we will do regardless of what they decide – do the very best we can for our children.

A handful of rubbish

Not a good start to the day. Awake too early (for a Sunday) work on my mind. A wet bed (again) and a grumpy child. I need to go out for a walk and escape for time out.

Around the park I am trying to settle my restless, busy thoughts. I pass the hebes and think “if only I could take the whole day out with nature, I could find some peace and focus”.

Then I see a piece of paper in the stream and I decide to pick it up and put it in a bin near by. Just one less piece of rubbish to clutter up one park in one world. A tiny action.

Then of course I see more rubbish lying near by, so I pick that up too. A few steps more, and I pick up more. Already I am growing tired, and realising my limits in this singular effort. At some point I decide to stop and let what is really little more than a symbolic gesture close.

I think then about how little I can do on my own, what I have heard about the real power for change being in collective efforts. If only I could organise a clean the park campaign, together we could make a real difference. Yet I know I do not have the will, the time, the energy to do this. Well I have, but I choose not to.

I then feel quite lonely, picking up rubbish all by myself. Tired, and a bit defeated as I turn around the circuit towards home.

Suddenly, looking up, I see a man, a jogger, older and fitter than I am, going across the park. He is stooping and picking up rubbish as he goes. Another lone campaigner. I have a sense he has been doing this for a long time, as part of his routine. I am filled again with hope, and so I pick up my bag and pick up some more rubbish.

I pour out half a bottle of raspberry fizzy drink onto the grass, put the bottle in my bag, and walk on.

A little later, I remember that a hungry person who picked up that bottle would drink the contents. Whether someone had spat, or peed in it, or not. The food scraps in my bags of rubbish might be his only breakfast today.

My hands are dirty now, and I hold them at my sides. I am contaminated by the rubbish of the world, and I long to wash my hands.

As I walk up the hill towards home, I know the real challenge for me is when I have no water to wash my hands, and I need to rub my nose. In it.