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.
Friday, June 15, 2012
First Round
Seems to be less nausea and more sleepy. Although in saying that gaz feels pretty yuck. I am pleased he's sleeping through it. He is more knowledgable about his drugs..anti nausea etc and takes control himself which is good and asks for them.
Home tomorrow. Raining buckets of water here, I have the fire on early, hoping to bank it up and come home tonight to a warm house. Zach got some wood in and I am cleaning and organizing house after a chaotic few weeks. Time for a winter clean up and chuck out I think. Lots of accumulated clutter that does not add to required ambience.
Kat
Sunday, June 10, 2012
Thursday, June 7, 2012
Good Week: Bad Week
The mid to long term outlook of my sarcoma has always been been poor but the speed of progression and biology indicated that it was slow moving and this was very good, e.g. the single and only tumour in my lung they cut out in November was just .5 cm (after maybe 3 years growth); with slow growth they have lots of treatment options. When tumour pops up they just spot radiate/laser or surgically remove. Many people last 20 years with this approach. When you get metastasis spread (secondary cancer) of synovial sarcoma it seems difficult to cure but they are very good at delaying any spread.
![]() |
| Arrows identifying some of the Mets, round cricket ball likely cause of pain issue |
They've ruled out surgery and I am in palliative care; the aggressive nature of the tumours has opened one door on a chemo (Ifos) regime which is good at attacking fast growing tumours; I'm expecting to start this treatment next week. There is an outside chance of cure, but most likely this will just buy us some time.
![]() |
| Heathier lung - Dec 2012 |
But I have things to do and the fat lady hasn't started warming up her singing voice yet.
- Family holiday, assuming treatment goes well, beaches, heat, water and piƱa coladas sounds like a good idea, or maybe a holiday or two in a central otago or otematata crib.
- Family wedding, Nephew Tom and Jen are "going to get married ", thats going to be so much fun
- Few old mates incoming for property makeover (& a few beers and tunes)
- and finally my favourite thing; just time with Kat, the kids, whanau and friends.
How am I feeling? Its a bit surreal, we've grieved and been sad at many times during this cancer journey. We knew the odds weren't great but certainly didn't think that it would accelerate like this. I want to be in the best possible state (mind, body & soul) to again fight and overcome if possible. My Christian faith is providing me with a strong base and comfort as we face the next few months. Please add me and our family to your prayers.
GARY from KATANDADLS Blog reposted for Gaz x
Monday, June 4, 2012
Oasis of Good Health : Oasis of Ignorance
We've had a wonderfully late Summer and Autumn; nothing much of note, just enjoying living life and plenty of family time and good and interesting work balance.
Kat has resumed working in Mental health as a registered nurse and I am very proud of her. She seems to be working with some nice people and doing well.
I am a little behind in keeping my blog up to date and about to rekindle communication.
Back soon...
Gary
Thursday, April 19, 2012
Saturday, March 24, 2012
Autumn Fires
We've had some woodwork angels turn up last weekend and they chopped down a tree on our property plus spilt wood and made a big stack of firewood for winter. We've had a lot of woodwork angels in our life over the last couple of years making a positive difference. Often the primary reason its a great opportunity for getting together and mate-ship.
Life is going along very smoothly for us at present; it's very normal and we love normal. We've had too much drama in our household in the last two years which impacts everyone not just the patient. We're hoping to have a clear run in 2012 with no further significant medical procedures. I was meant to have a routine monitoring scan in March but no invite has been sent and I'm not in a hurry to chase them.
Kat has returned to psychiatric nursing and is doing great and I'm very proud of her. She is enjoying it and making a positive impact on people's lives who struggle with mental illness and all that that brings. It saturday morning here and she is just off to the market to get provisions for the week; I'm kicking back having a nice breakfast and about to watch sport on TV. Life is good.
:-) Gary
Saturday, March 17, 2012
Staring at the Sun: Overcoming the dread of Death
"Ideas have power ... insights of great thinkers and writers .. help us quell roiling thoughts on death and discover meaningful paths through life." - page 77.
"Staring at the Sun is a profoundly encouraging approach to the universal issue of mortality. Dr. Yalom helps us recognize that the fear of death is at the heart of much of our anxiety. Once we confront our own mortality we are inspired to rearrange our priorities, communicate more deeply with those we love, appreciate more keenly the beauty of life, and increase our willingness to take the risks necessary for personal fulfilment"
Here is a very good book review of Staring at the Sun... thethinkingmother.blogspot.co.nz
Or buy the book here.. Amazon
About the title: "le soleil ni la mort ne peuvent se regarder en face" (You cannot stare straight into the sun, or death) Francois de La Rochefoucauld, Maxim26
Saturday, March 3, 2012
10 Ways to Help a Friend With Cancer
If it takes a village to raise a child, you might say it also takes one to care for the sick. Cancer is at once personal and communal. Disease lives in the sufferer’s body but the experience of illness is shared, often intimately, by our loved ones. And yet, caring for the sick can feel like writing a travelogue about a country you’ve never visited. You can’t know where you haven’t been.
“What can I do to help??..Click to read more”...


