I have 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 make 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 treatment options.
My team at Ward 8C Dunedin public hospital has been brilliant at fighting and trying to concur 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 allowd 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 the surviving synovial sarcoma community… SO LONG. Thanks for the support, it has been outstanding and allowed me to fight the good fight. I also encourage you to actively chat 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.
Most people who have SS will overcome this disease and live a long and happy life. But there are a subset who won’t and unfortunately I am in this category. I am happy with my decision to cease curative treatment. I’ve also been surprised how long it’s taken to change your mindset and drugs into a palliative mode. It’s not something you can do last moment. If you want to follow my journey since my decision check out getbetterget.blogspot.co.nz. Max, good luck on your fight go for it and I hope you make it through. Cheers Gary
Hi Elodie, thanks for correcting my link. The hospice is amazing. I was expected to die 3 days after arrival, but this is my 20th day and counting. It’s been a lovely period, of turning off fight mode and just having quality time with family. When you get to this stage it’s not scary, and I’m very much at peace and pain free.
Some of this is to do with the palliative care drugs they give you, some deal with anxiety and they give you a small amount of ‘happy’ drugs.
This hospice is very much about living and making best use of the time we have, yesterday I went and watched cricket with a mate, today we are having a short church service with a subset of my good friends from my church, tomorrow I am going to a bird sanctuary with my wife. Check out my blog if you want to know more. I loved this forum and how it helps people. Cheers Gary
Hi Gary I am so happy to hear you are enjoying quality time with your family, thank you for all the encouragement you have given us and being an unforgetable friend. all thought we have never meet in person, I feel as if we have and that it's a pleasure to know you....We Love You!
Thanks Gary for keeping us updated. I've often wondered if I will be able to overcome my fear when death comes closer. I know now that once I get to that stage, I will just have to think about you to recover peace :-) Your wisdom is viral!
Another dying young man has written a beautiful song to say good bye:
Elodie, thanks for these videos they are both amazing! You are so good at finding relevant content; you must work as a researcher!
My only recommendation if your prognosis has turned very grim is to not leave it too late to plunge through your fear and choose palliative care. Often a supporter will post on this forum after the death of a relative with Synovial Sarcoma, that they were in pain or sick at the end. I don’t think it needs to be like this.
Also I think that there is a difference between North Americans and other countries such as Down Under, UK and Europe. I think other countries may accept their fate earlier. Is it because Americans keep fighting to the end, that they beleive and hope in the drug and early research companies that their cures will work with no side effects? Maybe other countries just have no choice as the latest treatment options aren’t available, maybe they are more conservative. What do you think?
I had a treatment option for Votrient but decided against it and to go palliative. I think it may have extended my life slightly, but no guarantee with where my heath is at and how I would have responded, but I chose quality time over quantity.
I have had so many great talks and new activities in the last couple of weeks with my wife Kat and children and Im very pleased about my decision. I think the impact on my family has also been so positive. One of my children was dreading me going back into treatment.
To me the options seemed to be a nice hospice or palliative care established at home or to be fighting to the last moment in a hospital environment.
Hopefully for you it won’t come to this and you’ll make it through, but I just wanted to share these ideas in case it doesn’t go to plan.
This reminds me of a lady who used to post on the Sarcoma Alliance. She had metastatic synovial sarcoma and at one point decided she didn't want any more treatment because she cared more about quality of life. At the time she made the decision her tumors did not cause much symptoms. Later. her breathing started to be affected and she shared her anxiety, distress and pain. I infer from her messages that she was not followed by a palliative care team. I am not sure how this happened. May be, she did not tell her oncologist she did not want the treatment and just did not show up for it? In any case, she missed her goal for quality of life :-(
It sounded like she was following an ostrich strategy, and putting a plan in place is critical. I think I remember the lady.
For me my oncologist said that if any of the side effects occured due to my lungs being in such bad condition and other health issues that it would knock me over and not necessary in a pleasant way. The decision was reasonably easy.
Palliative is a plan B and needs organised, it’s not often something you can switch on last minute. I got my mind around it when I was feeling well and didn’t expect to need it. Plan A of overcoming the desease was going ok. It’s a bit like life insurance you buy it at a time you don’t think you will need it but you do it anyway.
Cheers / best wishes/ I feel ive done pretty well posting " my last post " three weeks.
Gaz