Thursday, January 31, 2013

Indian Summers

I have been thinking about the term Indian Summer and I looked it up.
 One definition said a burst of unseasonal heat and warm balmy days following a hard frost. Thats what it feels like being here. 28 degree days all week and calmness with Gary after an acute and terrifying time.
A thought that lurks at the back of my head is ' Winter is coming' .
We watched Game of Thrones' on Soho last year and Gary read the series after that. It was set in a time where summer had being present for a very long time and winter was beyond an enormous wall that protected the kingdom. Everyone knew that the summer couldn't continue and constant reference was made to the fact that winter would eventually come and what a winter it would be.
Gary asked our rather lovely night nurse last night about how it would be for him in his final days. He had fears of being a fish out of water (his words) and wondered how things were managed. Our very calm nurse talked Medication and symptomology with Gaz and he was much reassured. He will talk to the doctor further today to get more of an understanding about it. He wants to be able to explain to his children to reassure them.
We wake between two and three every night and chat. Its a lovely quiet time, Gary usually gets his middle of the night pain meds and then we sleep til 7.
Home, yesterday was good. Gaz loved it.
It is a bit of Gypsy caravan when we arrive with all the oxygen stuff and meds etc but it works out.
I cooked him whitebait fritters with whitebait that my Dad and Gary caught, a fresh tomato from the glasshouse and some potato from the garden, plus a Peroni which he eyed up and flogged off me.   Little Little but tasty and he ate it all up.
He was on a bit of a mission to get some stuff tidied up and managed to achieve what he set out to. No surprises there.

Wednesday, January 30, 2013


0845 and our duck friend has just arrived for her breakfast. Meant to be 25 degrees today and we are planning another trip home. Hana and Zach are coming. Gaz and I both slept without sleepers which is great. So nice to wake up with a clear head. I had my cherry Juice and lots chamomile tea before bed and that did the trick.
Gary's Oncologist popped in last night which Gaz really appreciated. So many goodbyes.
On Garys mind this week was his decision about no more treatment, as he had been approved for Pazopanib. He made the decision when he was acutely unwell in hospital and there were no viable options that would improve his quality of life. The drug was finally available but too late for Gaz as it became too risky.
As he has stabilized, the question of this drug has bubbled up amongst the peace and Gary has been talking it through. His oncologist validated Garys decision not to take it all over again as the side effects are many and unknown and Gary cannot at this stage handle any side effects.
He is enjoying his days at present and wants to keep it that way.
I can hear the waters of the Leith and a man digging in the garden outside. A clunk of metal against the ground.

I bought a book of 150 New Zealand love poems from UBS and we are enjoying reading them to each other. I highly recommend it.
There is a lavender Garden here filled with bumble bees and tangerine Roses.The bees get so drowsy they spend alot of time collapsed on the ground. You have to watch where you are stepping.

Monday, January 28, 2013

Monday 28

Yesterday went well. Gaz loved being home, the cat was almost hysterical with happiness to have him home and spent the whole time on him purring and rolling around. Gaz very pleased to see her too.
It was another gorgeous hot day. Gary spent time outside on the couch and then napped in bed. We ate zucchini and tomato from the Garden and fried potatoes. Gaz pleased with home cooked food and ate up.
Today was a bit quieter.
Gary was sore and tired after the car trip home and was a bit restless in the night.
28 degrees down south. We lounged around in our new digs in our sarongs today. I popped out while Gary had a nap and did some chores for back to school. Getting Zach organized. He gets back from Parachute on Wednesday and it seems a long time away. We are both really missing him.
Hana popped in to give her dad some love..lovely to see her bright candle of a head nestled up with her Dad.

Sunday, January 27, 2013

Jan 27th

Lovely morning here again.Warm sunny,perfect breeze. Gaz having a shave then a shower.We had a good nights sleep with a little help from our chemical friends. I am back in the room with Gaz, didnt really work out being apart. Nice to wake together. Always the best part.
The bell bird is singing outside our room and their is a very friendly duck that we have been feeding.who knew they could eat so much.I fed him 6 slices of Gluten free bread the other day and she didnt hold back. Eek my stomach would ache for hours.
We are planning on a wee drive home today for a few hours. So looking forward to that. Taking the dog to remind him that he is our dog and we are his people. His new home is rather spectacular and I am worried he may not want to come home. Gary is keen to lie on the couch and pat Spacey. I know she be very pleased with that.
Lunch plan is veggies from the garden and then back here this afternoon.
Lots of prayer whoever is reading this for an uneventful and successful trip.
Happy birthday to Arihana and Fay xxxxxxx

Friday, January 25, 2013

Friday25th January 12.57

This is part of a letter I just wrote to someone so thought I would start my post with it.

" I am sitting here with gaz and its sunny and peaceful. Last night I slept for the first time .a few wakeful moments but overall good.I took a phenergan(anti-histamnine) and it helped.It is really good here.
An amazing process to get to where we are, Gary has made the decison as to where he wants to be.
He feels really peaceful with the decision made and is pain free(really he is) for the first time in three years. He is loving the hospice and the staff. They look after the whole family. It is very welcoming and they are very gentle and caring. It is a 5 star hotel with plus plus stars for care and compassion.
There are times I think well here we are and this is where we will live now and I feel that as Gary has stabilized that we could be here forever. Funny thoughts run through my head. Everyday has been different and from when we first came in, are getting better. Everyone here is getting to know gary and poor things... me. I slept last night in another room which was great for Gary too as we sleep differently. Again part of separating that I found so difficult but all part of the process. I am learning that I can trust others to take care of Gary well and its not all up to me. I am learning everyday.
Its a good place. Thinking of you two Love Kat "

Gary had a whizz about the place on a Mobility scooter today and loved the ability to be independent. He did exhaust himself  afterwards but enjoyed it.He was funny! every now and then he would crank it up to top speed and have a wee zoom.
It is quiet this morning and it feels great. I got completely overwhelmed by people and visitors and the publicness of our bedroom being filled with people all the time. It is who gary is and so important to him but again another learning curve for me. At times I have just had to nod and leave as I feel exhausted. As I sleep more I will come right.
I went home yesterday and watered tomatoes, cleaned my darling sons room (ha!) and did other chores washing etc. The cats have gone feral..they will come right, I cant help that.They are well fed but no company and Spacey gazza's super furry purry puss had pats from him on the couch every day. 
Aunty Heather here for lunch.
Zach is up at Parachute which feels really good and these images came in from Tim who put his super heroes costume on and drove Marco and Zach up there.

Thursday, January 24, 2013

Living aWake

In my head I have multiple threads to lead into a blog post with.They start up in clear moments in my day and I think 'oh thats makes sense I will write that' That moment is fairly brief and usually when I am having my toast in the morning.10 minutes in the kitchen with my cup of tea and tomatoes on toast .It is so peaceful here and I feel for the first time that Gary is safe and I can leave him for small amounts of time to catch up on stuff- school uniforms, cats, glasshouses, a dog that decided Portobello Pub was the best option for company since his owners absenteed themselves, food gathering.
It had been fairly intense from admission and it feels such a luxury sitting here tying this morning.
Gary got up at 6.30 and is sitting through in the lounge watching tele and having a bit of breakfast (his first). He thinks I am sleeping and I did try to go back to sleep but I have started existing on about four and half hours sleep a night and thats not generally in a row. I wake to him all night. This is not new and periodically at home very normal but we had more rooms at home to settle into to and different strategies. We are relearning how it works all over again.
When Gary was first admitted we came via ED. I would NOT recommend this but it appears to be the only way. He was an acute admit with a clear history and it was obvious what needed to be done. 8c had a bed for him and yet it took 9hours for admission to the ward with Gary in Acute pain the whole time. The staff were lovely but nothing happened no dots were connected. His pain was not managed successfully until he got to 8c where they knew him and it was sorted. He had four nights in hospital. Two of those were spent in the treatment room (we had it to ourselves and it was great to have space and be with Gaz I dozed in the lazy boy.
At that time he was deteriorating rapidly and was given a possible few days to live.
It was so shocking after being so well for a period of time. And even though he has cancer and secondary tumours it would have been a sudden death in its intensity.
What I have always prayed for amongst this, is time. I feel God has everything in hand, of course I have also asked for many other considerations but time is the most valuable if you can recognize it.
I prayed for time when Gary came in acutely last year and the options were poor. And it happened.

This time as Gary's breathing changed in 8C I prayed for more time. My prayer wasn't very gentle.
I ranted and screamed silently at God in the middle of night and paced up and down the treatment as Gary slept. It helped.
I was driving yesterday I clicked that once again time has been granted. Time for resolution talk of Gary's going a tying up of threads and a chance for people to express themselves to Gary.
He has stabilized for the present and is very much at peace with his decision. He is really liking the Hospice and feels comfortable. No pain. (for the first time in three years). It is a relief for him not to have to manage.
Family have been present, friends have driven down country, music, Love and the emails and messages for Gary and us have been phenomenal. Gary has had us reading and re-reading them to him. It has meant such alot to him. His community is very international. As days and breath grows shorter we will limit how much time is spent outside of family, but at the moment gary is still drawing people in and being there for others. This is his nature.
Our motto through this has been Bird by Bird
 Birds are a prevalent theme. Gary has become a bird watcher while at home. Greay Warblers occupied him for some time this summer. We have a coffee cup which we share with native birds on it that remind us at breakfast time. Bird by bird.
In an earlier post I referenced Alain De Botton and the Art of travel. A couple of days ago as Gary and I were talking over some family stuff occurring.He was getting upset and  I looked at him and said 'this is life honey, this is it and all our family are together and we are all dealing with something so hard in the only way we all know how and really trying our best and we are here all together."
 He looked at me and said ''yes the only problem with Death is that you bring yourself to it.''  We laughed and laughed. We were actually in the bathroom and it seemed the whole world was outside the door.
The thing is to do what you ever it is to need to do and be whatever it is. My trouble is that I often its not quite enough and I say the wrong thing share the wrong thing wish I could be more like Sister Theresa.
It is all so public.I am public and generally when you are in Public there is preparation and a public persona. But here its Public 24/7 and while in the past wee while I have had a ok ego and not wondered what people think. Its sneaking back in as my soft underbelly is exposed. Sleep deprivation is not a pretty thing.
My lovely friend bought my Bible in about four? days ago (no idea of time at the moment) and I was reading about Jesus the Man who was compassionate fierce loyal a healer and a man who also got irritated and took time out, one who spoke his mind and one who got tired. It has given me permission to accept my humanness a bit more. (well at least try to)
I will try to blog everyday and update as I find texting really hard. Im not good at it and my thumb is a bit munted from a scissor stick injury.

Thursday, January 17, 2013


I have a post on Garys blog please read.
He is sleeping peacefully at this moment.It is time for people to say their goodbyes to my darling. I tell gary I will see him soon and that I will be there before him as there is no time domain in Heaven. I am truly heartbroken and it hurts so much I wonder how I will bear it.