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

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

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

Spots on the move

Yesterday was scan day and unfortunately it showed the metastise spots in both my lungs were growing and on the move again. This development is not unexpected although disappointing that it has happened so soon plus you always hope that the little buggers will just disappear. We've been enjoying a couple of great months of relatively good health and good times. Unlike other times I don't feel ill but we know that the situation will change quickly unless we take some positive action and start an effective treatment that will nip the progression in the bud.

We think the most effective treatment option for me at this stage is Votrient/ Pazopanib. Votrient has only been recently FDA approved in the USA and is a smart new drug which targets the Sarcoma Cancer cells; it's not a curative treatment but interferes with the growth and reproduction of the cancer cells and slows their spread in the body.

Unfortunately this very new and niffty drug is not funded by Pharmac in New Zealand; but very fortunately for me GlaxoSmithKline have decided that I'm a good candidate to be provided the drugs on compassionate grounds. I still have a few hoops to jump through to get the drugs but very excited about having this effective option. I suspect the 'compassion' is more of a marketing exercise with the large Drug Company showing off their new drug and how clever it is. But whatever I am extremely happy to be given this option and the generosity and I will endeavour to do my part and live a long and happy life and sing the praises how effective this treatment option is. 

Reviewing a dozen individual cases on our synovial sarcoma online forum it is well regarded and the drug is very well tolerated with few side effects; for some it has had very positive impacts, for most it has brought quality time for a few months, for a few it has no impact. The advertised efficacy is that it has extended life by 3 months compared to no treatment. Such where things are at, I am very happy to take those odds. More about Votrient here.

I need to have a few more scans and tests and expect to start treatment early in new year. 

Merry Christmas 

Gary

Me and a Flamboyant Tree, Queensland Dec 2012

The Best Birthday Present

Yesterday was my birthday and untimely it started with a visit with my Oncologist. Historically and generally my doctors contacts are negative i.e. you're dealing with the progressing situation of your disease or the full on procedures or side effects that you have to endure. But yesterdays one was very positive and I came away with the feeling that we are creating small miracles here.... Backstory In July things had gone pear shape and I had many many aggressively growing tumours in both lungs, plus some large ones causing pain and breathing difficulties. Our treatment options was limited to chemo (Ifosfamide) with expectation that this was unlikely to be effective. So timewise and in theory things should be a looking pretty grim for me about now, but fortunately we've rewritten that story and have a different or at least extended version.

Earlier in the week I had some more imaging work done and yesterday my Oncologist took us through the timeline of images and showed how the cancer had regressed. The large tumours were essentially gone or shadows of themselves and an area we called the "milky way" of many small tumours has got significantly better. The expectation is that it wont stay this way and that the tumours will get a footing and start progressing again, also unfortunately I am at the end of the road with Ifosfamide and although we talked on some other treatment options there is doubt on availability and effectiveness.

But for now I am very thankful for a great birthday present and looking forward to a long hot summer.

Zach and Macca with Birthday Brasier 

 

Romance in our Garden

Of late Ive been spending plenty of time in our lovely garden, resting, reading and puddling making a deck for Kat; during which I've noticed a vast amount of romance occurring in our garden last week & I spent some time trying to catch some pics. The three most noisy and interesting culprits i.e. birds were:

Firstly the Grey Herons who were making a commotion in the bottom tree of lawn, lots of feather frilling, squawking courtship going on there.

Secondly the Tui, I had two of these doing formula 1 around the garden. I couldn't get a good pic, they were going so fast and so borrowed this pic off the net (Tui explosion in city) . 

and finally my favourite:

The Riroriro (Grey Warbler) which Ive only discovered this year. These  little wonders live in most kiwi gardens and make a very distinctive ethereal noise every spring.  They are difficult to spot mainly because they are very small and don't stay in in the same place for long. But they are easy to hear, very loud and distinctive song. You may find that like mine that they are singing outside your window right now and that you've never noticed them before. 

Spot the Riroriro here (Grey Warbler)..

There he is Sporting Zachs new haircut 

Smaller than sparrows, a little like waxeyes

 Fliting and calling for its partner.

Bottom line... Its amazing what you will spot and learn if you take the time to notice.