Meditation

I’ve been missing in action for some time.

I teased both Judith and Kim about them doing the same – and quite rightly got the pot/kettle reaction. Lol

After Sue died I found my words disappeared. Quite literally. I was unable to string more than a few words together at a time. And I wanted to hibernate from the world – not to sleep – it seems sleep is still beyond me at the moment, but to shut myself away from everyone.
I’m getting a little better. The horror is fading.

Sue went into Hospice because she was unable to breathe. They put her on oxygen and antibiotics for what they thought was a chest infection.
She got worse. Much worse.
The struggle to breathe consumed her. She was first unable to eat, then unable to even talk.
Ten horrendous, ghastly days.
She was in no pain. Hospice was wonderful – both to her and to us.
But Sue was completely unable to give up. I was with her all day, every day.

The relief when she finally died was overwhelming. She died very quietly, at dawn on the most gloriously beautiful morning. When I got home from Hospice, my kitchen was full of rainbows – we both hang crystals in our windows. It seemed just right.

She had been embroidering in her last months – once study was over.

YoDo Bread

Rebecca made this…
intolerantchef.blogspot.com

I haven’t had bread for a hundred years (it seems). But I made this twice – once for us and again for Rick’s colleague who is a newly diagnosed celiac.
He loved it too.

YoDo bread really is easy and delicious – even Rick was impressed. I ate mine piled high with home-made chicken liver pate… yum!

Thanks Rebecca

The Show Must Go On

Over the course of Sue’s illness, I did a lot of reading and research. A LOT of reading and research.
Trying to find something… anything … that might help her.
I will post some of the information – in the hope it might help someone you know.
In the meantime – please go to Lynda’s blog and watch this video. It will take about an hour. I hope it will change your life.
achangeoflife.blogspot.co.nz

Look for Cereal Killers – the post Lynda wrote on Monday June 30

I can’t remember how to do the link thing, sorry, but please go there. This is all tied up with what I discovered about a ketogenic diet and its effect on cancer.

Peace

Sue died this morning at dawn.
It is a glorious, clear, cold morning.
Perfect.

Here we go again…

Sue goes into hospital tomorrow.
She has been in terrible pain. Morphine doesn’t help.
It feels like a band is hard around gopher stomach.
She has been virtually unable to eat – 2 teaspoons of rice and half a cup of broth is a huge meal.
She was losing weight at the rate of half a kilo a day.
That stopped, swelling in her gut started and the pain got much worse.
Tomorrow they will operate to try and ‘suck out the goop’ from her gut, in an effort to relieve the pressure and give her some quality of life.
It turns out that the Hospice doctors are far more pro-active in terms of on going treatment than the oncologist was.
We met her surgeon on Friday – he is a long, tall, geeky-nerdy chap whom I would follow to the ends of the Earth. He is immensely kind and optimistic.
He loves these types of cases – as does her Hospice doctor.
They have been wonderful, but we are frightened of her having to spend time at the hospital as she will be back in the ward she had such mixed treatment from back at the beginning of all this.
Of course, this time around we are much more aware of the need to advocate for her. And I will. Quietly, but very firmly if necessary.
She is very, very unwell.
And yet determined to fight.
I have been cleaning like a demon. It doesn’t help her, but it gives me something to do and passes the time.
On another note:
I have been completely unable to comment on your blogs. I try, and the interwebs swallow my comment whole. Please know that I check in with you each day and long to be in touch. You are very important to me and have kept me sane throughout this thing.
Thank you XO

Graduation Day

Sue goes home

Sue has been discharged from hospital. They will pass her on to Hospice care.
Chemotherapy hasn’t worked.
She now has malignant ascites – which is a fluid build-up in the abdomen.
There is nothing more they can do for her, other than keep her comfortable.
Oddly, once they drained the fluid (they expected to get up to 30 litres – they got just 4 – which gives you some indication just how swollen her belly is, and how uncomfortable she is) she began to feel so much better.
Which is why it came as such a shock to her when the oncologist came to talk to us (her and me) yesterday.
The oncologist – whom we are still not sure we like much – is gutted. He has tried every procedure he could think of and nothing has worked.
We are too.
The prognosis is very bad. The ‘average’ lifespan after such a diagnosis is 4 months (according to everything I can find on Dr Google), but the initial fluid build up happened very fast.
I have everything crossed that she will be able to attend her graduation on March 29. My gut feeling is that she will not.
I hope I am wrong.

Home Early

Well, the holiday didn’t go entirely to plan.

It started well – I kept getting one-word texts … “Wow!”
They were enchanted by the beauty that surrounds us.

Then she began to feel unwell – before she left, she’d had a pain in the centre of her chest – just below her rib cage. The oncologists thought it was either heartburn (medication didn’t help), or a side-effect of the chemo (in which case a holiday was a great idea).

It seems they were both wrong and half way around the Island there was a mad dash made to Christchurch Hospital where she stayed for two days. The doctors there think it is more a surgical issue (not cancerous – which is a relief), but she can’t eat without massive pain. And because the pain is so bad, she won’t eat – and has no appetite anyway.

So they returned home last night. Tomorrow she will contact the hospital here and try to get to see her surgeon. Hopefully something can be done.

We are all scared. But, while it is sad her holiday was spoiled, it is nice to have her closer.

Thank you all so much for your kind comments about how the holiday came about. They were all the sweeter because my ‘real’ friends thought it hilarious that I would win a competition and yet get nothing for myself – completely missing the fact I DID get exactly what I wanted – a special holiday for my sister. I need new friends.

Holiday

Late last year I entered a competition on a nationally syndicated radio station. “Win a Wish for Christmas”.
My wish was that Sue would be able to visit the South Island – the only item on her “bucket list”.
I won.
They gave $3,000 towards her trip.
A stranger… a complete stranger… heard her story and was so moved he donated a further $500.
Her friends, colleagues and family donated too – money, petrol vouchers and vouchers to various attractions – whale watching, gold panning etc.
She has been blown away by the kindness she has received. She wept for days that people would think she was worthy of such a treat. She got clearance from her oncologist to take a break from chemo,
and she has been counting the sleeps till she and her husband,Nigel,were due to leave.
That day is today.
On a glorious, utterly beautiful Monday, they boarded the Ferry in Wellington and headed to Picton, at the Top of the South.
From there they will pootle their way around the Island. They plan visiting beaches, paddling in rivers, checking out garage sales and second-hand stores, picnicking their way around.
Entering that competition has already been the very best thing I ever did.
All going well, they will be away a month.