Tuesday, August 23, 2011

Information made the difference

Gary is a successful businessman who is married and has three teenage children. He is also someone who can tell you everything you need to know about synovial sarcoma – a rare form of soft tissue cancer.....
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Monday, August 15, 2011

New Synovial Sarcoma Support Forum

If your family is dealing with Synovial Sarcoma, this support group is for you. The purpose of our community is to provide patients, families and friends affected with this cancer a place to find support, information, and most importantly a place to connect!
Synovial Sarcoma Survivors forum...Click here

Friday, August 12, 2011

Montye Gardner - Keep Shining Your Light

Montye connected with me through this blog and gave me some wonderfull advise and support before going into spinal surgery. Her synovial sarcoma was in her spinal column and underwent similar surgery prior to mine. She sent me some very long emails about the impact and day to day post op recovery and at the time provided me with amazing support and reassurance as I plunged into the unknown. Unfortunately Montye lost her battle with Synovial Cancer :-( 
More about her and her battle cane be found here:
Tribute to Montye
Montye's Blog
Montyes Cancer Blog

On 19/10/2010, at 3:16 PM, Montye Gardner wrote:
Thinking about you this week, I know you are just a few days away from your second surgery. I will be praying for you on the 20th and sending you healing positive thoughts. Stay strong and take recovery one day at a time... just think after one week you will start to feel a little better, after two weeks you will be up and around (slowly but moving) and three weeks you will start to feel a little more normal... by 6 weeks you should be back to your old self just be sure to take it easy... my muscles and back were still sore until about 5-6 months.

Remember - This too shall pass.

Wishing you all the best this week,


Lunch with Whanau

Wednesday, August 10, 2011

Out in the big wide world

It's interesting the challenge of getting back to "Normal" after being out of circulation for a year. My main issue is back pain and the issues surrounding this. Life is fantastic, but busy and at times overwhelming.  I am back up to see both my surgeons (Sarcoma specialist and Spinal Surgeon) in a couple of weeks and hoping that they will hatch a plan to solve the post op issues. The titanium rods in my back have snapped and this causes pain and seriously limits activities and I'm only working part-time. I find it frustrating as I cant do much to fix myself and just need to wait for the body to fix itself or for the surgeons to implement a plan. Its not life threatening and just a mechanical problem and as a result I may not be high up on priority lists. Pain medication works well and now is an essential part of daily living. I have an underlying concern  that this may become chronic and unresolvable. Initially I was please that surgery was not offered too fix this but now I'm ready to get back on the table. It doesn't seem to be a major op and hopefully it will be offered and will fix pain issues.
Bye for now
G :-)