A few people suggested I start a blog after I was diagnosed. Mostly because it's a good way to vent and it means you can look back and see how far you've come and how things have improved. I Agree that writing your thoughts down is an excellent way to vent frustrations without moaning to loved ones, it's also a good way of putting order into your thoughts to help you think clearly when you're head seems to have too much flying around in it all at once!
However, I didn't see the point in a blog as I felt it was a personal thing to do and no one else need be concerned with it. Instead I bought a lovely little leather bound notebook and i've been keeping my notes in there.
Since then, I've realised why a blog is a good idea. Whilst searching for hope on the internet I came across a few blogs of people who have been battling synovial sarcomas. The positive attitude and courage in some of these people when facing what they have to face has inspired me and lifted my spirits so many times now. I always thought my story was a bit too doom and gloom to bring to anyone's attention as most people are looking for success stories. I feel now that with all the twists and turns, my story is worth telling as it might give others hope and strength to stay strong and carry on when the outlook is bleak!
I've just started what I think is the final stage of my treatment, hence the 'better late than never'.. So I shall summarise the whole escapade and see how it pans out.
Wednesday 4 January 2012
Even more good news :)
I got the results of my first post treatment CT scan today. It's been a bit of a horrible week, i've been really nervous and quite on edge because I had that pain where my positive margins were. However all is well in the body of chelle! No evidence of disease :oD I guess most weeks leading up to results will be much the same.. As long as I dont spend too much time in between scans worrying I'll be doing OK. When I was sitting in the room waiting for my oncologist to come in it felt like a lifetime and I just wanted to run outside and say 'Just give me a thumbs up or a thumbs down I cant wait any longer!'
Phew!!
So the quest to prevent metastasis and get back to full health continues. I really wanted to climb a munro before the year was out but now that the snow is here I reckon i'll need to wait till next year. As for trying to help prevent metastasis.. I had three doses of urokinase in my hickman line, when it was blocked, which is known to contribute to metastasis. I was really quite annoyed when I found this out. They say they only put enough in to go into the line and not into your blood but not once did they get the same amount out my line as they had put in so I know some went into my blood.I guess usually it's ok to use urokinase as most people have surgery before chemo and therefore it wont make the tumour bleed. On a brighter note - two oncologists have mentioned the possibility that the fact my tumour was growing into a cavity it might be less likely to metastisize as it wont have had much pressure on it. Well there's no way of knowing but i'm going to do my best to stay healthy as that's all I can do... and seeing what has happened over the past year I feel quite positive about the power of a good attitude, positive thinking and hard work. I am amazed at the power of the mind when it comes to healing!
My oncologist spoke of some current trials with anti angiogenic drugs to prevent metastasis that are happening right now. Some things I have found interesting or informative are:
If you have synovial sarcoma and are receiving doxorubicn, you might find this interesting: http://clincancerres.aacrjournals.org/content/4/1/153.full.pdf
First I read this book: http://www.oup.com/us/catalog/general/subject/Medicine/Oncology/?view=usa&ci=9780195309447
Which made me change a lot of things about my diet and lifestyle, take some odd tablets and read more about cannabis and cancer. When I did I found this published paper by a scientist in Spain named manuel guzman: http://cannabismedicalresearch.blogspot.com/2009/10/cannabinoids-potential-anticancer.html. And I also got in touch with the man who wrote this: https://www.greenpassion.org/index.php?/topic/25047-prostate-cancer-gone-a-journal/. I found this very interesting and have acted upon it.
The integrative oncology book also got me interested in the power of the mind in healing. So I read these books: How your mind can heal your body by David R Hamilton and Love, Medicine and Miracles by the surgeon Bernie Siegel.
Anyway, about a month to go until my next X-ray so I shall enjoy my the next few weeks before I start freaking out a week prior again. Have just bought a new house out in the sticks, so shall be busy moving in over the next month or so :)
Happy New Year! So glad I made it!! It was on the 30th of December 2010 they said I might only have six months to live and I remember thinking at new year it might be my last new year celebration. But here I was this year with lots of good friends, family and my beautiful little one year old! :)
x
Phew!!
So the quest to prevent metastasis and get back to full health continues. I really wanted to climb a munro before the year was out but now that the snow is here I reckon i'll need to wait till next year. As for trying to help prevent metastasis.. I had three doses of urokinase in my hickman line, when it was blocked, which is known to contribute to metastasis. I was really quite annoyed when I found this out. They say they only put enough in to go into the line and not into your blood but not once did they get the same amount out my line as they had put in so I know some went into my blood.I guess usually it's ok to use urokinase as most people have surgery before chemo and therefore it wont make the tumour bleed. On a brighter note - two oncologists have mentioned the possibility that the fact my tumour was growing into a cavity it might be less likely to metastisize as it wont have had much pressure on it. Well there's no way of knowing but i'm going to do my best to stay healthy as that's all I can do... and seeing what has happened over the past year I feel quite positive about the power of a good attitude, positive thinking and hard work. I am amazed at the power of the mind when it comes to healing!
My oncologist spoke of some current trials with anti angiogenic drugs to prevent metastasis that are happening right now. Some things I have found interesting or informative are:
If you have synovial sarcoma and are receiving doxorubicn, you might find this interesting: http://clincancerres.aacrjournals.org/content/4/1/153.full.pdf
First I read this book: http://www.oup.com/us/catalog/general/subject/Medicine/Oncology/?view=usa&ci=9780195309447
Which made me change a lot of things about my diet and lifestyle, take some odd tablets and read more about cannabis and cancer. When I did I found this published paper by a scientist in Spain named manuel guzman: http://cannabismedicalresearch.blogspot.com/2009/10/cannabinoids-potential-anticancer.html. And I also got in touch with the man who wrote this: https://www.greenpassion.org/index.php?/topic/25047-prostate-cancer-gone-a-journal/. I found this very interesting and have acted upon it.
The integrative oncology book also got me interested in the power of the mind in healing. So I read these books: How your mind can heal your body by David R Hamilton and Love, Medicine and Miracles by the surgeon Bernie Siegel.
Anyway, about a month to go until my next X-ray so I shall enjoy my the next few weeks before I start freaking out a week prior again. Have just bought a new house out in the sticks, so shall be busy moving in over the next month or so :)
Happy New Year! So glad I made it!! It was on the 30th of December 2010 they said I might only have six months to live and I remember thinking at new year it might be my last new year celebration. But here I was this year with lots of good friends, family and my beautiful little one year old! :)
x
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