First 2 pics are just some pics from Christmas day. It was a scorching hot day Pic 1 trying to keep out of mid day sun pic 2 Kat encouraged us all to go to the Portobello Jetty for a swim. It was still late afternoon still very hot (outside and in the water), I like her little girl look encouraging in her first candidate niece Ella.
Fig 3. This is my mother in law Fay, she and I are in full voice singing along with others out of shot others with my Nephew Marco on the Guitar.
Update: Bit out of sync last few day, sleeping all the time and off food. Temp was up but back to normal and feeling better today. Feeling like and happy to be reclusive at present.
Cheers
Gaz
My journey: Living with and overcoming Synovial Sarcoma. A rare and nasty Cancer. Not a how-to guide but ideas and observations during my experience so far. There are only a few SS survivors publishing and I've found their information helpful and reassuring. The site is also to update my wonderful supporters on my progress. Image above was pre-diagnosis by my daughter of the 'Alien Baby'. This tumour has been removed but the battle to eradicate the disease continues.
Tuesday, February 26, 2013
Thursday, February 21, 2013
Comment on comments
Thanks supporters for all the comments on blogger, which is my preferred location for feedback. I love and read all, just sorry can't respond to all. Great to see some names from the past. :-)
Doing good in here, taking it day by day. I would call it very calm days and a bit reclusive at the moment which I'm enjoying. They tinker with the meds to refine and improve them plus to respond to changing medical condition. I have lots of time with immediate family with is fantastic, xx G
The photos of Zach and I were taken in Upper Waikaia, on a very large high country farm that we were staying on called Glenary, in early January 2013. As part of his learner driving Zach had just 4WD 14K's through a native bush and was feeling pretty happy for himself. The photos were taken where we were over looking a grade extreme 6 kayaking river, which you can slightly see behind Zac in top pic. Further down and past the rapids we went swimming. It was very picturesque although very cold for mid summer. Amazing place.
Gary
Also check out this YouTube video on how extreme the terrain is and hoe beautiful and powerful this river is: cut and past URL to browser
http://www.youtube.com/watch?v=AGjmTF9GnUY&feature=youtube_gdata_player
Doing good in here, taking it day by day. I would call it very calm days and a bit reclusive at the moment which I'm enjoying. They tinker with the meds to refine and improve them plus to respond to changing medical condition. I have lots of time with immediate family with is fantastic, xx G
The photos of Zach and I were taken in Upper Waikaia, on a very large high country farm that we were staying on called Glenary, in early January 2013. As part of his learner driving Zach had just 4WD 14K's through a native bush and was feeling pretty happy for himself. The photos were taken where we were over looking a grade extreme 6 kayaking river, which you can slightly see behind Zac in top pic. Further down and past the rapids we went swimming. It was very picturesque although very cold for mid summer. Amazing place.
Gary
Also check out this YouTube video on how extreme the terrain is and hoe beautiful and powerful this river is: cut and past URL to browser
http://www.youtube.com/watch?v=AGjmTF9GnUY&feature=youtube_gdata_player
Friday, February 15, 2013
Update: Friday 15th Hospice Day 29 - To shuffle off this mortal coil"
Hi all,
I seem to have tenacity to enjoy life and no desire ''To shuffle off this mortal coil" just yet.
The kids are in regularly which is great, and between them and Kat we've been having lots of interesting or just kick back chats. Also I've been doing a bit of reading and some writing which has been enjoyable. We've slowed down on activities somewhat, the recovery time compared to the length of the activity has become detrimentally disproportionate. We enjoyed a long trip home the other day, back at hospice at 10pm. It was great fun and did some nice stuff around the home.
We've found a close Asian restaurant (only 3 mobility scooter blocks) called Dumpling Palace and they do sensational dumplings a Nasi Goreng. Thats been fun for outings - see pic.
My pain levels and medication have been progressively going up a few % points every 3 or 4 days. I've had the odd breathing incident where I've struggled to get much breath at all, it sort of feels like an asthma attack and inevitably you panic a bit. Two of the attacks I've been able to meditate/ relax and just work through it. The others the medical team have used drugs to intervene to break me out of it. Otherwise my Oxygen levels in my blood remain good and a few days ago for a test I took my auxiliary oxygen cord off for 30 minutes and apart from me getting a bit puffy it had no detrimental impact. So no immediate threats but slow changes indicate some underlying detrimental changes and from past experience it's often just one straw that breaks the camels back. Bit let's hope that that's still some weeks off.
Kat, just brought be a tall glass of ice and San Pellagrinos Dark Orange soft drink, yum yum life is good.
Ciao
Gaz
I seem to have tenacity to enjoy life and no desire ''To shuffle off this mortal coil" just yet.
The kids are in regularly which is great, and between them and Kat we've been having lots of interesting or just kick back chats. Also I've been doing a bit of reading and some writing which has been enjoyable. We've slowed down on activities somewhat, the recovery time compared to the length of the activity has become detrimentally disproportionate. We enjoyed a long trip home the other day, back at hospice at 10pm. It was great fun and did some nice stuff around the home.
We've found a close Asian restaurant (only 3 mobility scooter blocks) called Dumpling Palace and they do sensational dumplings a Nasi Goreng. Thats been fun for outings - see pic.
My pain levels and medication have been progressively going up a few % points every 3 or 4 days. I've had the odd breathing incident where I've struggled to get much breath at all, it sort of feels like an asthma attack and inevitably you panic a bit. Two of the attacks I've been able to meditate/ relax and just work through it. The others the medical team have used drugs to intervene to break me out of it. Otherwise my Oxygen levels in my blood remain good and a few days ago for a test I took my auxiliary oxygen cord off for 30 minutes and apart from me getting a bit puffy it had no detrimental impact. So no immediate threats but slow changes indicate some underlying detrimental changes and from past experience it's often just one straw that breaks the camels back. Bit let's hope that that's still some weeks off.
Kat, just brought be a tall glass of ice and San Pellagrinos Dark Orange soft drink, yum yum life is good.
Ciao
Gaz
Friday, February 8, 2013
Update: Fri 8th: Hospice Day 22
Its great to get all the additional comments and to interact with you'll; you guys are getting the hang of posting, and please keep it up. If your not registered on google on the other options just choose anonymous.
The activities and outings we've have been doing have been great for building new family memories but also building my confidence; you initially get a bit apprehensive relying on a wheelchair/ mobility scooter and oxygen bottle and a lot more stuff you've got to cart in the car. I guess if things went badly wrong it could result in an ambulance trip back to the hospice; there is a degree of risk but worth it; isn't that just life?
I've enjoyed them all, so far:
Still feeling pretty well although of the energy that I had a few days back, although I think thats more to do with the long list above and just need to recharge the batteries.
Arriving in the hospice with apparently just 3 days to live and now being here 22; I think the staff have realised that I'm a fighter! I must admit I am pretty happy about the extra time with Whanau and experiences.
Cheers Gary
The activities and outings we've have been doing have been great for building new family memories but also building my confidence; you initially get a bit apprehensive relying on a wheelchair/ mobility scooter and oxygen bottle and a lot more stuff you've got to cart in the car. I guess if things went badly wrong it could result in an ambulance trip back to the hospice; there is a degree of risk but worth it; isn't that just life?
I've enjoyed them all, so far:
- Home: (x2)
- The Fix: (x2) - such good coffee
- Evening Walk: around North East Suburb with Kat. I've never spent time around here and its an interesting place and looks like its had an interesting holiday with lots of boarded up or reused industrial building. Obviously back in the day it wasn't just a domestic suburb.
- Chingford Stables & Park: walk with Kat and my first go on the mobility scooter (they go really fast. Beautiful trees here, and apparently the wealthy Dunedin Business people used to come down for a ride.
- Chingford Park Cricket: Watched the NEV Teen Wolves go down to Green Is with Dev. We increased the supporters by 300%, i.e. 1 other person was watching, Cricket was the winner.
- Toitu Museum: Tuesday with Macca and Kat - 3 Hours
- Orakanui Ecosanctuary: Wednesday with while family- 4 hours
Still feeling pretty well although of the energy that I had a few days back, although I think thats more to do with the long list above and just need to recharge the batteries.
Arriving in the hospice with apparently just 3 days to live and now being here 22; I think the staff have realised that I'm a fighter! I must admit I am pretty happy about the extra time with Whanau and experiences.
Cheers Gary
Thermal Image of me just now, "nurse nurse, what does this mean?" |
Tuesday, February 5, 2013
Day 19 in Hospice:
We had an outing from Hospice today and went to Toitu (early settlers museum) and coffee at The Fix with Kat and Macca. Pretty zonked now and resting back at the hospice. They really good here at encouraging you to live life and out and about with family.
Monday, February 4, 2013
Zach Sobiech, uplifting videos NB have your hanky ready
Cool video by a gorgeous young man and response by school children
Sunday, February 3, 2013
We love your comments and have made it easier for you!
Based on feedback on how difficult it is to post comments against blog posts, we've changed the settings on both our blogs to make it easier. Try it out
Kat and Gaz
Kat and Gaz
Saturday, February 2, 2013
Heath Update - Bounce
Three weeks ago I was very very sick and given 3 days to live. Memory wise I've lost quite a few days and at times been really out of it. I didn't eat food for about a week.
After a few days at the hospice we've been blessed and the situation turned around and stabilised and I restarted eating. They are very uncommitted on giving "your time", it's a very individual thing but three different doctors have given pretty dire predictions of the current lung situation. Although not for a few weeks.
We had two half days at home and realised with all the oxygen bottles, special beds, other equipment, pain pumps and of course the high chance of a medical emergency to manage; that if we shifted home we would effectively turning our home into a hospital and that Kat would be a 24X7 nurse. No Fun, so we are staying put and are committed to the hospice for the duration.
My left lung is gone. 3 weeks ago the centre of my right lung was clogged effectively closing off the bottom of the right lung from functioning. So during the bad period I was relying on a small part at that top of my right lung plus oxygen through a nose tube.
The revival has been put down to the clogged part in the middle of the right lung freeing up.
Yet unfortunately this cancer of mine is aggressive and rapid growing and will ultimately take hold of that free space. But not yet!!!! And in the words of Louis Armstrong there is "Still lots of living to do" This hospice is a very very cool place and very much a place to live and not to die.
My favourite activity is just having quality time (talking and activities) with Kat and the Kids, plus QT and farewells with close Whanau and friends. What I have loved during the last couple of weeks is mostly my head and thinking has been very clear. I discover your brain and most other things don't work so good when short of oxygen.
I have been doing some reading and talking with the lovely and caring palliative support team here, on the process of dying. I had already been pretty good but this has removed any fears that I had. Think about how miraculous a baby is at birth and how it instinctively knows how to be born... Your body is equally imprinted on how to die. Kat gave me the best analogy and said... it's like an old antique clock and your lungs are like a central cog with everything else interconnected. As the central spring winds down so do all the associated cogs (stomach, heart, brain etc) and over a couple of days the body will progressively shut down.
My trial run 3 weeks back gave me a feel what it would be like, and basically I was just sleepy and out of it. I was not at all anxious or stressed - the human body is an amazing creation. Here at the hospice they are far more skilled at using medication to eliminate any uncomfortable feelings (pain, fear etc). I will be very comfortable, plus surrounded by loved ones holding hands and singing a few tunes.
Kat and I had a walk (me on mobility scooter with oxygen bottle) to and through Chingford Park which was just amazing. We had a fun time, photos of our adventure to follow.
Photo below is me kicking back in my room today, I was pretty tired after yesterday's activities and will soon be off to sleep, which is becoming more and more a regular part of my afternoon routine.
Someone arrived with a Palmy Mutton Pie so I've got a higher priority.
Gaz
After a few days at the hospice we've been blessed and the situation turned around and stabilised and I restarted eating. They are very uncommitted on giving "your time", it's a very individual thing but three different doctors have given pretty dire predictions of the current lung situation. Although not for a few weeks.
We had two half days at home and realised with all the oxygen bottles, special beds, other equipment, pain pumps and of course the high chance of a medical emergency to manage; that if we shifted home we would effectively turning our home into a hospital and that Kat would be a 24X7 nurse. No Fun, so we are staying put and are committed to the hospice for the duration.
My left lung is gone. 3 weeks ago the centre of my right lung was clogged effectively closing off the bottom of the right lung from functioning. So during the bad period I was relying on a small part at that top of my right lung plus oxygen through a nose tube.
The revival has been put down to the clogged part in the middle of the right lung freeing up.
Yet unfortunately this cancer of mine is aggressive and rapid growing and will ultimately take hold of that free space. But not yet!!!! And in the words of Louis Armstrong there is "Still lots of living to do" This hospice is a very very cool place and very much a place to live and not to die.
My favourite activity is just having quality time (talking and activities) with Kat and the Kids, plus QT and farewells with close Whanau and friends. What I have loved during the last couple of weeks is mostly my head and thinking has been very clear. I discover your brain and most other things don't work so good when short of oxygen.
I have been doing some reading and talking with the lovely and caring palliative support team here, on the process of dying. I had already been pretty good but this has removed any fears that I had. Think about how miraculous a baby is at birth and how it instinctively knows how to be born... Your body is equally imprinted on how to die. Kat gave me the best analogy and said... it's like an old antique clock and your lungs are like a central cog with everything else interconnected. As the central spring winds down so do all the associated cogs (stomach, heart, brain etc) and over a couple of days the body will progressively shut down.
My trial run 3 weeks back gave me a feel what it would be like, and basically I was just sleepy and out of it. I was not at all anxious or stressed - the human body is an amazing creation. Here at the hospice they are far more skilled at using medication to eliminate any uncomfortable feelings (pain, fear etc). I will be very comfortable, plus surrounded by loved ones holding hands and singing a few tunes.
Kat and I had a walk (me on mobility scooter with oxygen bottle) to and through Chingford Park which was just amazing. We had a fun time, photos of our adventure to follow.
Photo below is me kicking back in my room today, I was pretty tired after yesterday's activities and will soon be off to sleep, which is becoming more and more a regular part of my afternoon routine.
Someone arrived with a Palmy Mutton Pie so I've got a higher priority.
Gaz
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
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.
Friday, February 1, 2013
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
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