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
Sunday, 4 December 2011
Monday, 28 November 2011
It's just me and lefty against the world..
So I was kinda back at square one, in terms of getting fit and used to just having one lung, after the RT induced tiredness wore off. It's been about two months since I finished. I'm starting to get out every day walking again and I plan on doing my first one lunged munro before the year is out :)
Tomorrow is my first CT scan since my operation. I've been looking forward to it, I hope to get good results so I get a wee boost to make me EVEN MORE jolly through the chrimbo period. Although yesterday I had an uncomfortable feeling at the bottom of my ribs and today it got worse. I've learnt to not freak out about little aches and pains to much as its totally normal, but because this is where my positive margins were, my mind is running away with its self a wee bit.
But other than the odd recurrence related freak out things have been going well. Robin has learnt to clap and therefore applauds most things I do, having your own wee ripple of applause following you around as you do the daily do, feels quite nice :) He's also started giving us kisses which is possibly one of the best bits of parenthood so far. His wee cousin Maya has started kissing too, here they are kissing each other :)
Roll on tomorrow..
Tomorrow is my first CT scan since my operation. I've been looking forward to it, I hope to get good results so I get a wee boost to make me EVEN MORE jolly through the chrimbo period. Although yesterday I had an uncomfortable feeling at the bottom of my ribs and today it got worse. I've learnt to not freak out about little aches and pains to much as its totally normal, but because this is where my positive margins were, my mind is running away with its self a wee bit.
But other than the odd recurrence related freak out things have been going well. Robin has learnt to clap and therefore applauds most things I do, having your own wee ripple of applause following you around as you do the daily do, feels quite nice :) He's also started giving us kisses which is possibly one of the best bits of parenthood so far. His wee cousin Maya has started kissing too, here they are kissing each other :)
Roll on tomorrow..
Monday, 17 October 2011
October 2011 - i'm finally up to date!
Radiotherapy finally came to an end. Phew!! That was definitely the hardest part so far. They said i'd get tired but I never thought i'd be THAT tired. It's been three weeks since I finished and I'm definitely getting my energy back.
We spent a week relaxing in Italy which was just what I needed. I have a bit of a holiday comedown now that i'm back in a very wet and dull Scotland. The beaches were amazing! I found that if i try and float in the sea I slowly flip over onto my face due to the whole one lung thing :) I also seen a guy on the beach with a thoracotomy scar, if he hadn't been Russian i'd love to have picked his brain about healing time.. as i'm still in quite a bit of pain when i'm mobile and i'm not sure if i should be.
So I'll have my first post op scan in a couple of weeks. After which I'll be visiting the cancer hospital every six weeks until further notice.. So i'll finally have some time to take stock of all this and really pick it apart and get my head around it. So far I've just been on the ride, holding on for dear life. My attitude and outlook constantly changing due to ever changing circumstances. I really need to have a long think about things, now that they have settled. When they said it was terminal, you can plan things and decide how to deal with it. Now I'm in a wee bit of a funny place, i don't know if I still have cancerous cells there and there's no way of finding out so it's just a waiting game. I know that there is really only one way of dealing with things and it has a lot to do with this:
We spent a week relaxing in Italy which was just what I needed. I have a bit of a holiday comedown now that i'm back in a very wet and dull Scotland. The beaches were amazing! I found that if i try and float in the sea I slowly flip over onto my face due to the whole one lung thing :) I also seen a guy on the beach with a thoracotomy scar, if he hadn't been Russian i'd love to have picked his brain about healing time.. as i'm still in quite a bit of pain when i'm mobile and i'm not sure if i should be.
So I'll have my first post op scan in a couple of weeks. After which I'll be visiting the cancer hospital every six weeks until further notice.. So i'll finally have some time to take stock of all this and really pick it apart and get my head around it. So far I've just been on the ride, holding on for dear life. My attitude and outlook constantly changing due to ever changing circumstances. I really need to have a long think about things, now that they have settled. When they said it was terminal, you can plan things and decide how to deal with it. Now I'm in a wee bit of a funny place, i don't know if I still have cancerous cells there and there's no way of finding out so it's just a waiting game. I know that there is really only one way of dealing with things and it has a lot to do with this:
Although there are some other things i need to work on, like my confidence which seems to have taken a dunt. Most importantly though, as I have no more planned treatment i'm just going to get better and make up for all the motherly and wifely duties i've been unable to take care of... Robin wont be a daddy's boy much longer :)
Wednesday, 14 September 2011
The story so far.. August 2011
Started radiotherapy, almost finished my six week course - sick and reeeeeeaaally tired! Hardest bit so far. (Getting 45gy to a field that covers half my chest from my clavicle to the top of my stomach. Then a boost of 9gy to both positive margin areas. I read a paper about radiotherpy to treat positive margins with sarcoma and it seems quite effective. Although significantly better if the dose is above 65gy but i think 45gy is the maximum you can get at your spine.)
Bought a campervan with our wedding money :oD As soon as my side affects start wearing off we're off to the outer hebrides to try it out!
Bought a campervan with our wedding money :oD As soon as my side affects start wearing off we're off to the outer hebrides to try it out!
Thursday, 1 September 2011
The story so far.. July 2011
The recovery was really fast at first. Every day I was going a little further and slowly coming off my pain killers. Three weeks after my operation I played the last ever Kings of Macumba gig on the main stage at the Wickerman festival. I didn't think i'd make it, I'm so glad I did! We couldn't hang about at the festival for long though because I couldn't walk far and was still in quite a bit of pain.
I'm the odd one out cause I got there too late to put my top on and crept up behind the band just in time to start playing..
The recovery has slowed right down recently though, the pain is the same every day. Although I feel capable of walking much further and for longer the pain in my back and ribs gets in the way which is quite frustrating. Although, I'd be in this pain for the rest of my life, gladly, if it meant I got to live to an old age! Still though, I can't help but have a wee moan and feel quite sad about the position we're all in. Most of the time we're happy and having a laugh together!
The recovery has slowed right down recently though, the pain is the same every day. Although I feel capable of walking much further and for longer the pain in my back and ribs gets in the way which is quite frustrating. Although, I'd be in this pain for the rest of my life, gladly, if it meant I got to live to an old age! Still though, I can't help but have a wee moan and feel quite sad about the position we're all in. Most of the time we're happy and having a laugh together!
The story so far.. June 2011
Followed by a couple of weeks at home feeling fine and being a proper mum :)
My friends from Lewis came to stay the night before I had to go into hospital for my operation which was great for taking my mind off it. The night I was in the hospital Mr Kirk came in and explained how he might just "open and close" and not be able to do anything. Or hr might be able to debulk it, but hopefully he'll be able to remove in completely, in which case he'll have to take my whole lung. I'm not sure why, but i'd convinced myself he was going to take it out and all we had to worry about was whether or not the margins were clear. So when he left I was upset and worried again.
The next morning everything happened really quickly and I woke up feeling like i'd been hit by a car. I asked if it was gone and the nurse said yes. I was really out of it and I vaguely remember hearing Davys voice. I told him I loved him, he said something about Robin and I smiled, then I threw up a few times and went back to sleep. Mr Kirk came in at some point and said he took all the visible tumour, my whole lung, my pleura and some of my diaphragm but that I got to keep all my ribs! He said he couldn't get the desired margin in two areas but the radiotherapy should take care of that - Once again, the best case scenario!
:)
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