Protect or Prepare?

A little bit of controversy for you today…  the next line of the blog is probably going to shock many of you and and possible start a flourish of criticism and complaints, but here we go.

I let my eight and six years old grandchildren handle my medications – and being a secondary cancer patient, there is some beefy stuff in my arsenal.

There.  I said it.  For those of you not already rushing off to call Children’s Services I’d like to explain why and how, and then you can be the judge.  A few weeks ago I blogged about old-fartinalia and how my medicines were getting so unruly I bought an idiot box – um I mean pill box – to stop me killing myself with the wrong medications.

“I remember that,” you might be saying “But hang on…  one day they were too confusing for you to handle but you’ve being letting the kids handle them?”

That’s right, I do.  Each Sunday Jordan and Charli help me take all my tablets out of the packets and fill up my pill box for the week ahead, and each Sunday I choose to be less hands on so that their confidence and skill increases.  Protect or Prepare.  Any one who has ever had a child will no doubt be faced with an endless stream of Protect or Prepare choices.    Sometimes you have to protect (when they are very small and don’t have experience) and sometimes you have to prepare (they have to go to school or learn to cross a road).  Other things are more discretionary and one of the most challenging choices is how to handle serious illnesses and dying.

My approach is to opt on the side of prepare, rather than protect my children and grandchildren from these tricky issues.  My grandkids (as with all little people, are curious and natural learners) and having three of them (4, 6 & 8) living with me at the moment, I’ve had an awful lot of sticky questions.

Jordan (left) teaches Charli (right) how to fill Nonna’s tablet box. Jordan had been filling the box for a few weeks prior to this photo.

We have had impromptu conversations about my mastectomy:
“Whats this Nonna?” asked Charli (6 years)
“That’s my fake boob honey.”
“Oh. Ok.  Why do you need a fake one?”
“Because the cancer made my real one very sick and the Doctor had to cut it off.”
“Oh, and the fake one makes you feel better about yourself?”  Charli surmised. I just had to hug her.  Little Miss I’m just six, had more understanding than a lot of adults.

We have talked about my Cancer being incurable:
“When is Nonna going to get better?” asked Jordan (8 years)
“She’s not, honey.  This type of cancer can be cured.” Said Mel, her Mum.
“So, her medicine are to stop her hurting so much?”
“And slow the Cancer down”.
Once again we were proud of Jordan’s understanding, she only turned 8 last week.

We talk openly about my treatment and medications:
“Nonna, Nonna!  One of your lollipops is on the loose!” said Harry aged (5 next week) before carefully picking up the non-drug end of my empty lozenge pain killer. Harry knows that particular drug can hurt other people and is aware of how to handle one on the loose 🙂

We’ve been fortunate in our house (and in both my grown childrens’ homes) that cleaning products have never been ingested, fire’s never been lit and medicines never taken in mistake of lollies.  I don’t believe it is because we have locked these things away and made them a mysterious taboo – in fact the opposite,  Hot, Sharp and Poison, were some of the first words my kids and now their children learn to understand.  Dangerous and breakable things were displayed safely, but never locked away or removed.  Kidlets were just closely supervised and taught about these things.

Now I have five beautiful grand children, who are being raised in a similar way. These five kidlets are very lucky that they have amazing parents who help them to see the wonder, fun and magic  in the world  as well as prepare them for life in all the forms they might encounter it. Needless to say a little bit of proud mum and Nonna bragging is sneaking into this blog but you know as much as  I adore my own children, the grand kidlets would not be as charming and awesome as they are without their other parent too. I love and appreciate my ‘other’ daughter Sharon, and my ‘other’ son Grant for the way they love, care for  and nurture their children too. I don’t like the term “in-law”  it sounds like a legal document rather than a heart based relationship, so I am lucky enough to have two daughters and two sons who between them are raising really wonderful human beings.

Disclaimer:  I am not professing that my parenting or my kids parenting is so flawless that accidents don’t happen; constant supervision is needed to teach these concepts.  No lock or education can take the place of an interested, involved parent supervising kidlets as they learn and explore the world.

I also think that by letting the kidlets be actively involved in my disease it will help them cope late on.  Medicines, doctors and long periods in bed while I am drowsy are going to become a regular feature of the rest of my life and likely to increase as time goes by.  I hope that exposure and explanations now, will make whatever happens in the future less scary and more normal for them.

To this end I encourage Jordan, Charli and Harry to come up and snuggle me on the weekends, or simple play computer games or watch a movie in bed next to me.  I love having them nearby, they enjoy the one on one time and I am happy that they are so comfortable being near by while I am sick.  I know that down the track there will come a time where I am spending more time in bed and able to do less: in these times I hope the grandies will continue to jump in next to me for a hug, chat, or a story, and that these fun memories will outweigh the not so nice ones.

Kidlets are more in tune, capable and responsible that we give them credit for.  Little hearts and souls can carry very heavy loads with such adult understanding and simple acceptance that it would put most of us to shame.  What kids CAN NOT handle is feeling unsure, excluded or not important enough to be involved.

I have trusted my kids (all 4 of them), and grandkidlets with the truth and the facts and they have responded with empathy, understanding and responsibility.   This, is why I believe in Prepare over Protect wherever possible.

Talking to a five year old about disease and dying is much more refreshing and honest than talking to most adults.  Not that this is a topic of conversation all  or even most of time in our house but on the occasion it arises we do talk, listen and  respond. Perhaps as adults we over-think the big issues, worry to much and forget to be in the moment – genuinely BE present, with the people around us.

Next time you are feeling frustrated and thinking of telling someone to “grow up”  … consider… maybe that’s the problem 🙂

A caravan, a caravan, my kingdom for a caravan or was that a motorhome?

Fighter Vanessa grabbed me by the scruff of my collar on Tuesday morning.
“C’mon, the sun is shining.  Caravans are a selling.  Let’s go!”
“No!” Frightened protested.  “I need to stay in bed today.”  I had run out of one of my pain killers and it wasn’t avaiable for a couple of days. I was terrified of how bad today was going to be.  The last thing I wanted to is go driving round the place climbing in and out of caravans.
“Well you are obviously not serious about this Parfait Party thing.” Fighter goaded.
“It will be different when I am actually on the road” Frightened tried.
“Rubbish”. Fighter retorted. “If you can’t be bothered getting out of bed to reach your goal, you don’t deserve it.  It ain’t gonna happen magically while you cuddle your pillow.”

Arrrh!  I hate it when she is right.  Off to Port Wakefield and Pt Clinton I went,  to walk around a handful of likely caravans in the flesh.  Soooo worth while.  On the first day I found out that all the pop-tops on my short list had to go  I just don’t have the reach or strength every day to be pulling roofs up and down or beds in or out.  I also realised that after a day of climbing in and out of caravans, there are sometimes that I just wont be able to come and go without a lot of pain so a toilet and shower inside is even more important than what I first considered.   Also as I looked at different sized caravans I wondered if I would be able to tow one after all.
“That looks awfully heavy and unstable.” Frightened worried.
“Hundreds of people manage to tow caravans everyday.”  Said Fighter Vanessa.
But despite Fighters instance that caravans were a viable vehicle, my mind and my heart began wandering back to motorhomes.

I spent the evening and well into the  small hours on Gumtree and Trading Post and anything that sold used caravans or motorhomes assessing a big list of vehicles.  I was sore and tired, and incredibly encouraged by the fact I driven and climbed all day.  But now  I was more confused that ever as I drifted off to sleep.  Caravan? Motorhome? Caravan? Motohome?

The magic is inside and how they are built.

Tuesday was ground hog day.
“C’mon , the sun is shining. Caravans are a selling”  Fighter chiming again.
“No! Just let me rest, please.”
“Okay sure. Rest up. No road trip then!” Fighter threatened with a very ‘no-dinner-no-desert’ tone.
“If you are serious though… I’m going back to Pt Wakefield to have a look at this private caravan sale.”
“I sat up in front of the mirror and blew a big childish raspberry at myself and hopped out of bed.

Fighter was right – if I couldn’t even be stuffed getting out of bed to go caravan shopping two days in a row, how did I really think I was going to go sight-seeing and parfait-partying all the live long day? 

Off I trotted again with Frightened and Fighter bickering away all day in my head.
“You don’t know where we are going do you?”  Frightened asked Fighter.  As I threw a  u-turn on the highway. “I do… just give me a minute to bring up a map… I’ll have a clue in …just…a … minute.”  Fighter responded (she is stubborn as all hell, terrible at directions and frankly a bit of a liar when it comes to stating her level of competence in such things).

Finally we (I?) got ourselves un-lost and found the turn-off to a private caravan sale on a rural property only to be met with a dead end.

“I told you I shouldn’t have come today.  This is stupid.  I can’t even get in the road”.  A road plant had just dumped tonnes soft fresh dirt lumps all across the road ready for grading. “It’s not a strong car, she’s old and needs to be handled gently.” Frightened said. “It’s still a car, it can do this.  JUST GO!”  my other alter demanded.   “Look that car went through.”

“He is a four-wheel drive and about six feet tall! “

“So what… JUST DRIVE THROUGH.”

And we did.  Very uneventful ride despite all the drama.  I giggled to myself about all the fun I was going to have on the road as Frightened and Fighter both jostle for the decision-making seat.  Fun times ahead!

Another successful day of caravan hunting revealed more facts:  The crew at Port Wakefield Caravans  can automate anything and love challenges, and their Aussie By Design caravans are to absolutely die for!  Frightened and Fighter are both properly in lust with this brand of van, although Frightened was muttering something about the microwave being to high and the overall size too big (Lordy girl, give it a rest).

Retiring to my laptop in the evening, still sore, still tired but still pressing on (thank you Fighter, you were right to make me go out again), I began googling a question bigger than the meaning of life… Should I buy a car and caravan? Or a motorhome?

Happy with my two days of road tripping and caravan hunting, but still perplexed, I was about to go to bed when…

… I found it!  Well I think I found it.  It was old and unexpected, irreverent and a little off kilter.  Solid, but not serious. Practical, but with room for personalisation.  If all goes well in a few days you’ll be hearing the first of many adventures from Rebs and her vintage Dodgybago!  Stay tuned

PS It was lovely talking to the helpful owners and staff at both Aussie by Design and YP Caravans & Custom Annexes . Customer service is right up there with both business even through they sell to very different markets. Together over the two days they taught me many things I did not know.

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When life gives you lemons… part II

I’m quickly learning through the Parfait Party that is the unexpected surprises that make life so sweet. The quirky, the thoughtful and even the downright confronting 🙂

So todays blog follows on from When life give you lemons part 1 to a little more unexpected tang in my Parfait. The Quirky, the Random and the Downright Confronting.

The Quirky and the Random…
One of my biggest sources of joy and giggles this week has come from a 3D logo created by Sam at Blue Crab Studio. Nowhere in my Parfait Party planning did I factor in a set of over sized novelty parfait glasses wrapped in a wood and perspex box.  I walked down the hall way the other day to find a BIG quirky 3D Parfait Party logo staring back at me.

Not only is it a piece of art, but a piece of functional inspiration: Sam has built in a removable lid and little note card giver.  Each day I can add a thought or a piece of inspiration to the great parfait of life!  What a wonderful crazy, unexpected idea.

This and many other wonderful big and little  and random things that my friends and family have been working on sometimes without my knowledge, remind me that much like the lemons in my letter box last week, there are many more people at work for the Parfait Party in many more creative and interesting ways that I will ever be able to imagine.

3D Parfait Party gift

Lemons: two large over sized parfait glasses.
Lemonade:  A beautiful, inspiring functional diary / artwork

Here are just a few examples of how people in my life have been busily making lemonade:
A Kiwi ( New Zealander) is planning a make your own Parfait Party at her home.
Kombi’s against Kancer concept stage
Parfait Party mentioned in blogs
Donations
Fuel sponsorship
A gift of glass rainbows to travel with.
SL friends – a giant marathon.
Friends and family sending letters to the media.
Family contacting potential sponsors.
A local group is planning a gold coin donation afternoon tea.
A fun name / numberplate competition.
An almost 5 year old telling me to not worry to just think about the fun I will have in my van.

Sometimes, as stated in an earlier blog I can get really hung up on the big things and trying control things. But I know firsthand that the surprises and little gestures mean the world to us and really do have the power to change attitudes, outcomes – and heck – probably even the world.

So I’ll be looking for opportunities to pass the lemonade forward wherever possible.  Sometimes it’s easy to think that I have too much on my plate or that I no longer have anything to give – but we all do have something to give.  A smile, an hours help, a loan of something fun, friendship, or a crazy 3D artwork and glass rainbows!

Everything – no matter how small, quirky or unexpected – influences the end goal.

And the Downright Confronting

So we’ve talked about good things begetting good things.  But what about proper lemons.  You know those downright crappy things that just darken the day? I’m going to bust out the silver lining cliche soon.  Twice in recent weeks I have had rather “dark cloud” conversations with professionals about the exit plan for palliative care. Umm … that’s awkward.

The professionals (both involved with people in various states of health) were so busy ticking boxes and being inconvenienced by my ongoing palliative care status – not even 6 months yet, that they were perfectly oblivious to the fact that getting out of palliative care generally involves a six foot box.  I guess this may not have arisen if I had moved through the system in an expected and efficient way …

Admittedly I made some assumptions that employees from a health transport service and a superannuation fund would have been exposed to the terms ‘terminal’ and ‘palliative’.  Surely I wouldn’t have to spell it out for them would I?

To be fair I know that most people (myself included) don’t really understand ‘palliative’ until it touches our lives, so for the sake of clarity…

…palliative care is essentially end of life care.  You may not die for several years, but palliative care is the term given when your treatment is no longer focused on a cure, but instead on quality of life and comfort for you and your family.  It is care for those who have a condition from which they will not recover.

The community health transport service is an amazing service for people on the Yorke Peninsula to access treatment and specialists in other towns (e.g. Wallaroo, Adelaide) at minimal cost.  It is an absolute godsend, and I don’t wish to detract from its immense value in retelling this little dark moment after all we all have our off days.

Anyway back to the story, I have been accessing the transport service for months, using the health bus when I am physically able but changing to a health car when the pain is too much for extended bus travel.   Upon booking a health car recently it appeared that my expiry date had passed, at least for car travel.
Transport Coordinator:  “I’ve got you down for the bus.”
Vanessa: “No, I have been taking the car while I getting my leg tumour treated”
Coordinator: “Well, you have been using the car for a while now and it’s only a short term thing it’s really for the frail-aged or disabled.”
Vanessa:  “Or in palliative care”  I added
Coordinator: “Yes but that is only supposed to be SHORT TERM. (Sigh) It can’t be a long term thing. How much longer will you be in palliative care?”
Vanessa: “Umm until I die … I suppose?”

It’s quite lucky that I have an odd personality. I can imagine that telling people that they have overstayed their palliative care timeframe could be very distressing.  I am fairly open about the subject but even I found this somewhat confronting.  I raised a brow, grinned and said to Mel that I felt like apologising for living too long.

Even worse was the interrogation from one of my superannuation funds. Earlier in the year I turned 55 and given my big adventure and having no guarantees on old age, I decided to draw down my super and use it for the Parfait Party.  After a long and non-productive discussion with HostPlus, my patience was wearing thin.  The super rep seemed  determined to hold on to my superannuation. We ended up here…
Super Rep: “So you are retired?”
Vanessa: “Yes, not by choice, as I said before I have a terminal illness and am in palliative care, I will not live long enough to retire.”
Super Rep: “Ok.  So you will be returning to the workforce at some stage then?”
Vanessa: “No, (eyes roll to the ceiling) I’ll be dying instead.”

Give me strength!   I had to nearly grunt the facts ape style at him before he would loosen his grip on a simple form.  “ME NO WORK – ME SICK – ME NEED SUPER NOW – NO LATER – ME DIE SOON.”

Again, I was thankful to be a fairly resilient  person with certain tolerance  about such things, people and systems.  I know end-stage disease is a very difficult position to accept and I was mortified (not for myself) but for all the people in my position, especially those who are less resilient  who have to justify their requests  to bureaucrats in such demoralising terms:  “Please sir, I need this because I am dying. Yes Sir, I promise I won’t go back to work”.

And so at long last we reach the silver lining:)

Lemons:  A crappy disease with no cure, and a world that finds it difficult to deal with these conditions. Hanging around in palliative care seems to be a bit on the nose.
Lemonade:    Sharing my story and helping people understand what is means to be in palliative care.

I am in Palliative Care
I am alive; please don’t write me off or treat me as if I was already dead.
I am ill and I will probably die from my condition, that is if the proverbial bus doesn’t get me; so please understand I might have new physical, mental or emotional limitations.
I am ill and I am going to die far sooner that I imagined, there are uncomfortable things we  will need to deal with.
I am still the same person, sister, friend, son or parent I have always been; Please treat me the same. Our relationship doesn’t need to change.
I may have things I wish to do or I may change my priorities. Please try to understand.  My decisions might not make sense to you, but they are decisions I choose to make, and, sometimes they are ones I have to make.
I am interested in what you are doing, feeling and thinking, let me wipe your tears and hold your hand too – protecting me from unpleasantness doesn’t help – it makes me feel alienated.
I do want to hear what you think or dream of, we don’t always have to talk about me 🙂
I do want your honest  feedback and ideas – just because I am ill you do not have to let me have my own way all the time.

The Parfait Party… because it’s always better when you Parfait with friends! (Gina Sparks)

Waves and hugs to all — I’m finally back from the flu 🙂 Frightened Vanessa was terrified it seemed all gone down the gurgler,  but Fighting V kicked her butt and managed to  keep me dreaming.  So I thought I’d share my dream vehicle/s with you.

I’m chasing one with 5 passenger seats, so that I  can take family and friends with  me for parts of this  adventure – not too worried about sleeping because everyone I know  is a good camper 🙂

It must of course be an automatic, safe and unlikely to need major repairs every  five minutes.

An onboard toilet and shower are important to me so that I can pull off the road if I am tired, have a sleep  and umm ermm well take care  of everything 🙂

So here are  some pics from  my vision board, each  of them  are rather wonderful  in their own way.  So I’m sending prayers and wishes to the gods of Winnebago, Toyota Coaster and Jayco.

Winnebago great floorplan

Seating for 4 around the table – imagine the grandies playing a game or colouring as I drive to another Awesome Aussie and their town 🙂

The PERFECT Layout – Jayco conquest

The Jayco conquest – look at those sleek lines less wind resistance ? 🙂

Car seate and toilet and shower whee!

Ok… ok… I admit it — I’m in love with this Jayco Conquest — it’s just perfect 🙂 Wanders off to chat to the universe about a used or loan one 🙂

The trusty, versatile, roomy Toyota Coaster is right up there in the dream stakes too 🙂