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.
Saturday 16 June 2012
And the good news continues..
It's June, summer is in full swing (so it's pouring of rain outside)! My garden is all green, pink, yellow, purple and more green. My son is 1 and a half and becoming his own wee person. My husband is back at work and loving it. Life is goooooood! And as a wee cherry on top I just got good results from my latest CT scan. Well it's not a wee cherry, it's a MASSIVE one, so big the cake is squashed!! I'm so relieved, the week in between my scan and results was crazy, as usual. I dont need to think about getting good results cause I know I can deal with that eeeaaasy! But I need to force myself to think about getting a bad result so I feel I'm prepared for it.. which I never accomplish, but at least I'm being realistic I suppose. I bought two books of death and dying while I was waiting on my results. What am I like?!? Truth is though, it's a 50/50 chance so i'm not being crazy.. just trying to be prepared. Anyway, it's all good, so i'm stoked. I can FINALLY get excited about going to Canada next month as I have no scans in between now and then so can see no reason why I wouldn't be going now. So i've bought a celebratory bikini and some flip flops! My friend bought me some celebratory cakes but then I picked up another friends dog, to watch him for a couple of nights, and he ate the celebratory cakes (which looked amazing) quicker than you can say "NOOOO!!"
I'm also continuing on an introspective spritual journey that I started and then forgot about when I got sick, i'm not sure where to start though. Meditating helps, and reading lots. One of the books on dying by Dr Elisabeth Kubler Ross speaks about the similarities between dream state, deep meditation and near death experiences.. I really want to find out more about this and become more aware of my dreams and unconcious mind, and I generally want to be less attached..... Argh I always want to go on about my life in these posts, but it's really just a cancer blog (exciting, I know!) So I try to refrain, what does my personal life have to do with it? Or does have something to do with it? I don't know.. I just want someone with a sarcoma to read it and think, she's doing alright and things looked so bleak at the beginning.. and maybe, just maybe, they'll get a wee bit of hope which will give them a wee bit of energy, from me, to fight a wee bit harder and not be so sad.
Right, I'll shut up now. I'm Ok! It's almost been a year since my big fat, fast growing lumpy lodger was removed from my chest... that's wonderful! I miss my lung a wee bit, but not that much.. and I love my left lung more that ever!
x
I'm also continuing on an introspective spritual journey that I started and then forgot about when I got sick, i'm not sure where to start though. Meditating helps, and reading lots. One of the books on dying by Dr Elisabeth Kubler Ross speaks about the similarities between dream state, deep meditation and near death experiences.. I really want to find out more about this and become more aware of my dreams and unconcious mind, and I generally want to be less attached..... Argh I always want to go on about my life in these posts, but it's really just a cancer blog (exciting, I know!) So I try to refrain, what does my personal life have to do with it? Or does have something to do with it? I don't know.. I just want someone with a sarcoma to read it and think, she's doing alright and things looked so bleak at the beginning.. and maybe, just maybe, they'll get a wee bit of hope which will give them a wee bit of energy, from me, to fight a wee bit harder and not be so sad.
Right, I'll shut up now. I'm Ok! It's almost been a year since my big fat, fast growing lumpy lodger was removed from my chest... that's wonderful! I miss my lung a wee bit, but not that much.. and I love my left lung more that ever!
x
Thursday 8 March 2012
Spring is springing!
I've had anorher x ray, in which everything looks 'normal'. Although they agreed it would be hard to see a recurrence where my lung used to be as that whole area just appears white on an xray. It's the other lung i'm more worried about anyway, and they'd definitely be able to see something in there. I'd like to get a copy of my xrays but not sure how they'd go about it, perhaps just take a screen shot? So it's good news for another two months.. although about a week after my xray I started feeling a bit wheezy but I doubt anything untoward coupld have popped up that quickly.
Lots of people seem to get quite excited when I get the 'OK' for my results, I tend to just feel releived but not excited. I know i'm not out the woods yet and wont be for some time. I feel pleased that things are ok, but it doesn't take the worry away, although i guess it eases off for a wee while. I think maybe I just dont feel as happy as I expect myself to because i'm back at the cancer hospital, and even though its to get good results it just brings it all home again and I think about it more.
I'm not even sure how many years I'll need to be cancer free before they begin to think it's not coming back and I dont really like to think about how long it's been already, cause I know it hasn't been long at all. Although since I had positive margins, I dont think i'm even though of as being cancer free just now. I generally feel quite good about it all, I think i'm doing all the right things to stay healthy. Although when we talk about something in the future the first thing that always comes into my head is 'Will I be here for that?' Like when all my friends and I bought tickets for a concert last year - the concert is next month now so i'm pretty sure I WILL be there :) We just recently booked up to go to Canada in four months, so fingers crossed. I DO have cancellation insurance though. Still have two scans to get before then. Mostly I worry about being here for milestones in Robins life, like talking and such like. He's walking now, and he certainly umderstands lots, he's amazing!
(P.S I got an excellent price for my travel insurancewith.com. £230 for the whole family and i could fill everything in online, the only website I've found so far that even had synovial sarcoma in the drop down menu. Before I found this I was almost put off going to canada by the crazy prices I was being quoted.)
Aaaaaanyway, considering 15 months ago I was told I might have less than six months to live things are going pretty good! I feel healthy, my baby is now a toddler and Davy is back at work full time. BRAW!
I've started yoga which is really helping with the muscle damage from my operation, and also with relaxation. Hillwalking is HARD, not nearly as enjoyable as it was before. Even at the top I dont feel relieved and happy to take in the view, I worry about walking down! Which used to be easy. I think it's not just because of the difficulty breathing, but i'm also just not as fit, and I get tired more easily, so hopefully that will all continue to improve.... Or I might just sack hillwalking, let it be a thing of the past and spend sunny days just chilling out beside a river or loch. That would be a shame though, i'm hoping that after a lot of practice hillwalking will be as enjoyable as it was before. We climbed Ben A'an the other day, which is a really small hill, but very steep... I really didn't enjoy it but i'm sure it was for the best. Before my op I would have been up and down in two hours without much effort, i think it took me three and a half hours this time and I hit the wall about three times! Ooft!
Lots of people seem to get quite excited when I get the 'OK' for my results, I tend to just feel releived but not excited. I know i'm not out the woods yet and wont be for some time. I feel pleased that things are ok, but it doesn't take the worry away, although i guess it eases off for a wee while. I think maybe I just dont feel as happy as I expect myself to because i'm back at the cancer hospital, and even though its to get good results it just brings it all home again and I think about it more.
I'm not even sure how many years I'll need to be cancer free before they begin to think it's not coming back and I dont really like to think about how long it's been already, cause I know it hasn't been long at all. Although since I had positive margins, I dont think i'm even though of as being cancer free just now. I generally feel quite good about it all, I think i'm doing all the right things to stay healthy. Although when we talk about something in the future the first thing that always comes into my head is 'Will I be here for that?' Like when all my friends and I bought tickets for a concert last year - the concert is next month now so i'm pretty sure I WILL be there :) We just recently booked up to go to Canada in four months, so fingers crossed. I DO have cancellation insurance though. Still have two scans to get before then. Mostly I worry about being here for milestones in Robins life, like talking and such like. He's walking now, and he certainly umderstands lots, he's amazing!
(P.S I got an excellent price for my travel insurancewith.com. £230 for the whole family and i could fill everything in online, the only website I've found so far that even had synovial sarcoma in the drop down menu. Before I found this I was almost put off going to canada by the crazy prices I was being quoted.)
Aaaaaanyway, considering 15 months ago I was told I might have less than six months to live things are going pretty good! I feel healthy, my baby is now a toddler and Davy is back at work full time. BRAW!
I've started yoga which is really helping with the muscle damage from my operation, and also with relaxation. Hillwalking is HARD, not nearly as enjoyable as it was before. Even at the top I dont feel relieved and happy to take in the view, I worry about walking down! Which used to be easy. I think it's not just because of the difficulty breathing, but i'm also just not as fit, and I get tired more easily, so hopefully that will all continue to improve.... Or I might just sack hillwalking, let it be a thing of the past and spend sunny days just chilling out beside a river or loch. That would be a shame though, i'm hoping that after a lot of practice hillwalking will be as enjoyable as it was before. We climbed Ben A'an the other day, which is a really small hill, but very steep... I really didn't enjoy it but i'm sure it was for the best. Before my op I would have been up and down in two hours without much effort, i think it took me three and a half hours this time and I hit the wall about three times! Ooft!
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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