Thursday, January 31, 2013

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 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

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

Bye for now Gary


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

Friday, January 25, 2013

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

Tuesday, January 22, 2013

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

Thursday, January 17, 2013

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.

Tuesday, January 15, 2013

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.

Gazza update

Gaz has had a comfortable night, still struggling with some nausea but slowly getting there.Pain control starting to be more effective.Very drowsy with all he is taking.He is having oxygen to help him breathe which he likes as he is struggling without it.Today he is going for a scan to see were and if some fluid drainage is appropriate.
Plan at this stage looking ahead the week is to keep stabalizing him with anti-inflammmatories, pain meds and IV fluids.
Gary as usual is very inclusive with people and so lovely to be around. He is getting very tired and prefers short visits. He is loving his children who pop in frequently in-between their jobs and activities and cuddle him.
We are not sure where this going. Gary has been approved for Votrient but at this stage it has not as yet appearred.This appears to be the only option for a treatment that has a possibility of shrinking the tumours and reducing the effect of them on Garys lungs.
It has happened so quickly it is a mix of surreal and real.Too hard. Gary has never done anything in his life by halves and true to course this disease is doing the same.
We will keep posting
love love love

Saturday, January 12, 2013

Holiday End

Unfortunately my 4 holidays (Large High Country farm, Stewart Island, Queensland Australia and Otematata) in the last 2 months have come to an abrupt end. I'm not big on bucket lists but we have certainly ticked off many neat activities, lots of swimming, hand feeding kaka, sighting a saddle back bird, lying in field with Kat and watching wild fire and lighting. It's been a lot of fun. Today was the last day with Kat needing to get back to work but but alas my body has packed up and resulted in a rushed trip back from Otematata to Dunedin Hospital emergency department. My left lung is playing up causing a lot of pain and restricting breathing. So I've been sitting in ED most of the afternoon being treated with pain relief whilst they explore what's the problem item accumulated in lung (blood, tumour, infection) I'm due to go for a CT scan shortly which will confirm the issue and treatment option. I'm being admitted and it looks like it will be a late night before we have this sorted, ill post more tomorrow's and update outcome. G