Macca

Last but not least here is my final child Mackenzie whom is soon to turn 19 and shes given me an ultimatum to be around for her party in 3 weeks. When I've had my sick periods over the last three years Mackenzie has been a regular at my bedside. She has given me countless relaxing foot and hand rubs to make me feel better and even given me shaves in bed during periods post surgery when this was beyond me. Macca is very observant and always wanting to know the current status and details of my Synovial Sarcoma and treatment coming up and details of side effects. She especially didn't like the chemo phases!
She has given me a lot of comfort just often through her presence and being there. Macca is very beautiful and talented and painted the graphic at the top of my blog "let's get him" when just 15. It's an amazing image and really highlights the challenge with the disease that we needed to overcome.
For all my children I feel sad that they have had a "sick dad" since they been young and through most of their teenage years. I would have liked to have had some more active years with them, and for them not to experience the pretty tough and frontline post treatment side effects and impacts on my body and mind e.g. "Someone get a towel and bucket Dads just been sick" or "Dads a bit manic today he's on steroids to overcome chemo side effects" etc etc.
But the kids have just mucked in and provided support got involved and done their bit. Another upside to this, plus with me not working for most of this time, is that we've become closer individually and us a family unit. We've been fighting this together. I've have also had many periods of relative wellness and we've made the most of these to live life and have new experiences e.g family trip to Samoa.

I've also hoped that my treatment and the outcome will have no lasting detrimental impact on Kat and the Kids; but that they will come through as better and stronger people. Of course there will be grief and they will miss me in daily life, but in time they will work through this.

"Grief is the price we pay for love" - Queen Elizabeth the 2nd

And unfortunately we can't control the timing of our death.... "Jesus has a place ready and he wont take you there untill it's the right time" John 14

Dad xx

Allans Beach, (Ultimate dog walk beach) Otago Peninsula

Dog walk with Mango mid Dec 2012. I Watching seal in background. Mango looking gorgeous posing for pic.

Whanau only

Just to be clear

Whanau means family and on most days only immediate, occasionally some very close friends decided on a day to day basis.

Please do not pop in to the hospice, it is difficult to find space here at times. 

It is a time for us. 

As you all know Gary loves all the people and is very very social. He really, really appreciates all the notes and messages and reads his blog and checks in all day.

He said today.' I still feel so strongly that I want to reach out and help people on the forum, I feel like I need to share my Peace and where I am at to help them make decisions.' But this enthusiasm doesn't not translate into seeing people as he has limited energy and breath. He wants to save his breath for his kids.

Macker has just arrived to see her Dad and these moments are not to be interrupted.

xx

50,000 Views..... Watch out PSY!

Today the 1st of Feb 2013 my little old, down under blog will have past 50,000 views on the web. It's not quite Gangnam Style but certainly a lot more hits than I envisaged when I first started out. NZ makes up 40% of total viewers, USA & Canada 30% followed by UK, Europe and Australia 7%.
Also there is some supporter in Latvia who's hit my site a few site; Bija patikami tikties :-) Do you have Synovial Sarcoma? :-)

My favorite group of viewers and supporters are others who have Synovial Sarcoma and many have contacted via my blog by comments and emails and with some online friendships established. It's satisfying to think my experiences shared may have helped them.
Also within there was been a subgroup, people who may have just gone though one of my activities e.g spinal surgery, chemo, terminal illness, driving cool dodges. Etc.
My many local Whanau, friends makes up the largest support and user base probably about 50% and the blog has achieved its objective of disseminating of information and 2-way interaction. We had 471 comments responded back, and just 6 spams that needed deleted.

It's not for everyone this degree of disclosure, but for me it's achieved it's objective, and I think the world is a better place by the knowledge and thinking and support provided to others. I believe the site has been far more about living than dying and overcoming adversity rather than wallowing in it.

There is certainly a trend and a greater number of sites like this becoming more common than when I started, why don't you choose your topic and go to blogger.com and start your own.

Ive still plenty of life but slowing down and blogging is not a priority. Going forward check out Kats blog for updates katandadls.blogspot.co.nz.

Pic below is opening presents on the new deck on Christmas day.

Bye for now Gary

Arihana

This is my darling daughter Arihana and our eldest child. She is currently going through a hippie period, growing dredlocks and wearing all sorts of interesting clothes that mostly work together. She was the one that we had the 21st party for and the photo below was taken on Christmas day when she gave us a demonstration of the fire hoola-hoop. Being a parent you get pretty apprehensive watching flame so close to her hair and skin. You want to be protective for your children, guide then from dangers and support them in making good decisions.
You also want to see how their lives works out, will she get married? Who to? Children? Etc etc.
And of course be part of these key events e.g. Hugging my mokopuna! Unfortunately I'm not going to experience these and this has taken awhile to overcome.

What I do know is that she and our other children, have had a good start in life, and they know that they have been very loved and cared for by their parents. I'm sure I could have been a better Dad and prioritizing more quality time is probably my biggest fault, although I hadn't expected to be checking out so soon and I'm sure this would have corrected itself over time.

Going forward I have confidence that Arihana, and the other kids, will make good decisions (and bad ones from which they will learn from). They will ultimately just do what they want to do but they will have Kat and other good peoples around them for support.

I just need to get over myself and my wants and realize that I have done my bit. I believe that part of me lives/ ripples on within Kat, my kids and actually all my Whanau and friends. E.g. When Kat is hugging a future mokopuna (grand baby) that I am within her also enjoying the experience.

I have physically stabilize a lot in the last couple of weeks, back when at times I was very unwell due to rapidly changing pain and drug situation. I was talking a lot of rubbish and acting at times irregularly. During this time Arihana sat and held my hand and calmed me for long hours and her calming spirit manage to settle me down and get me through this tough period . Thanks Ari and your calming hands xx Dad

From KAT

I am blogging on my page.Gary is reading everything and enjoying all comments and he will reply when he can.Thank you all so much KAT

Hospice Reggae

I've had a dramatic and detrimental change in my heath status (Again!);
One moment holidaying and enjoying swimming and relaxing in hot high mountain rivers to being rushed to hospital; to face difficult decisions on treatment options. Both lungs had accumulated significant amounts of cancer related material, in small isolated compartments. Not just METS but also blood and water. We came to the conclusion that we had no viable curable treatment options.
My team at Ward 8C Dunedin public hospital has been brilliant at fighting and trying to conquer my SS cancer. But even these super heroes, couldn't perform miracles.

Our family has now been resident in the Otago Community Hospice for 5 days. My stay has been refreshening and reviving. Firstly the drugs and care put me on a even keel so that I have been able to engage and have quality time with my family and friends. It's has been an Oasis/ Sanctuary which has allowed us to chat, laugh, talk, cry and to appreciate the quality time that we have left together. I am pain free and at Peace!

To my good friends and fellow members of our synovial sarcoma community... SO LONG. Thanks for the support, it has been outstanding and allowed me to fight the good fight. I encourage you to actively engage and participate, make friends, create a strong community that will enable us to improve the odds on overcoming this horrid disease.

Today has been an exciting day, my eldest daughters Arihana's, 21st Birthday and we've had a impromptu party. Ive attached a example of our down-under version reggae version Newworldson.

Hospice Reggae - Newworldson

Life is good.... I hope to see you down the line
Gary x

thusday early morning

Gazza is having a peaceful night. He said before that 'I was panicked yesterday but tonight I'm not'.
We just had a lovely hug and he looked in my eyes and smiled. It was so good. I love him so much, it is truly what people call heartbreaking.
Hi temp is rising slightly because of the infection in his lungs which is no longer being treated. He is not in any pain and looks beautiful. I can hear him breathing from where I am typing it is  a lovely sound.
Tomorrow we are hopefully transferring to the hospice. Gary very keen on this.
To be very clear for people who are confused. Garys disease has progressed extremely quickly and his lungs are filled with tumours and fluid.The treatment options were invasive and did not guarantee any relief from pain. They  possibly would have extended his life by a couple of weeks but nothing was certain.
Gary made the decison for no more proceedures. Post admission he was tested ,scanned ,poked with so many needles he was exhasted and saddend by it and the prospect of further intervention.He was seen by a huge team of very caring and professional people.They were fantastic.
Gary lived every moment fully right up admission.
He was singing along tonight with Sue on her Guitair and the kids.
x

My DARLING man is tired

Gary has decided with all the information that has been available in the last two days and his innate knowledge of his body and disease, that it is time.
We are planning on staying in the hospital until there is bed at the hospice. We are not sure when this will be. He is enjoying his kids. I am sorry but he is exhausted and not handling visitors at the moment. This may change, messages of love greatly received.
KAT