The meeting this week with my spinal surgeon went well, I really like the guy and find him exceptionally smart and very engaging. No more surgery for me at the moment the risk vs. benefit vs. need for my body to rest and recover after a year of medical attention means that its just not worth it. He mentioned that Pain Management could be a life time issue, but hopefully it will improve over next 6 months. Surgery is an option but it's major and would involve more metal-ware securing the broken rods, including new metal-ware on the inside of the spine :-P. The break is the suspected source of my daily pain, but its not certain and surgery may not fix the issue. The fix would make the bottom of the spine very strong and rigid which may transfer issue and cause problems higher up on the spine. Good news current broken structure although moving it appears stable and strong. My current pain regime is working well and although I'd hoped to come off this, alas no.
I'm all ok with all this and pleased to have some certainty and clearer understanding of the issues involved. I’m still coming to terms with what this means lifestyle wise, as current state restricts physical activities no Physio, no Golf, no Skiing etc etc.
So how to fix a broken spine?.. I've learnt through all this to enjoy the abilities that you possess today, were all carrying around our own "broken spine", often the only thing that's holding us back is our attitude to our situation and not getting on and enjoying life.
Today I can......
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.
Saturday, September 3, 2011
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.....
Read more
Read more
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
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,
Montye
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,
Montye
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 :-)
Bye for now
G :-)
Saturday, July 9, 2011
Thursday, June 23, 2011
Stacey Kramer: The best gift I ever survived
Stacey Kramer offers a moving, personal, 3-minute parable that shows how an unwanted experience -- frightening, traumatic, costly -- can turn out to be a priceless gift.
http://www.ted.com/talks/stacey_kramer_the_best_gift_i_ever_survived.html
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