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.
Monday 18 February 2013
Hmph!
I don't know why, but I'm having more than the odd cancer related freak out these days. It's only been a month and a half since my last scan, this is a new record I think. I've had two chest infections and the wheezyness just freaked me out I think, and got me thinking about things. I wish it hadn't...
I stupidly started reading about recurrence tonight, why oh why did I do that? Why can't I just get on with life and be glad to be alive? I read a horrible paper about how synovial sarcoma tends to metastasize after five years....?!?! Everything else said it usually came back within two?! Which would be great cause I'm more than half way there. Although I think in that study only four of the patients were treated correctly with a planned biopsy followed by a wide resection or amputation.. So that makes me feel a bit better as I had a decent resection, although without clear margins. Also this was between '68 and '99 and a lot has improved since then... So we'll ignore that one for now... But it gets worse!!! The next one I read about survival rates said Patients with synovial sarcoma less than 5 cm in size has a cancer-specific survival rate at 10 years of 100%, compared with a 10-year survival rate of 32% and 0% for those with sarcoma 5 to 10 cm and greater than 10 cm, respectively..... MINE WAS 17cm!!!!!! Uh oh.. And as if that wasn't bad enough it also said Patients with a clean margin of excision were found to have a 10-year cancer-specific survival rate of 43%, compared with 0% for those with microscopic positive margins... Which I had. Fucksticks!!
Why did I read this stuff?!? I've been putting it off for so long, why did I crumble tonight. I guess it's best to know so you can be realistic. But there's so many factors that make each case different, my oncologist said the fact it was growing in to my chest cavity without much pressure on it might work in my favour....?
Pffft. I'm annoyed at myself. I thought I could relax a bit after two years and forget all about it after five... I must have made that up though...? Who knows. I seemed to think that's what my onc said.
Sorry, this is a totally crap post. Especially since I say this blog is to give people in my situation hope... But the truth is having cancer is just shit some days, and you do stupid stuff like this. Then other days you count your blessings and get on with it. There are LOADS of survivors and treatments are always getting better so don't be disheartened. And don't read stuff on the Internet. And if your tumour was less than 5cm and you had clear margins - REJOICE! I'm going to ask my oncologist all about it next month at my clinic and get the proper up to date answers..which will hopefully be "patients with tumours in their pleural space called Michelle who suffer from anxiety have a 120% survival rate."
I love blogging, I feel better already! I AM so lucky, this time two years ago I was just hoping I could hear my son say mummy, and now he's telling me off and all sorts. I need to stop being so pessimistic.
x
I stupidly started reading about recurrence tonight, why oh why did I do that? Why can't I just get on with life and be glad to be alive? I read a horrible paper about how synovial sarcoma tends to metastasize after five years....?!?! Everything else said it usually came back within two?! Which would be great cause I'm more than half way there. Although I think in that study only four of the patients were treated correctly with a planned biopsy followed by a wide resection or amputation.. So that makes me feel a bit better as I had a decent resection, although without clear margins. Also this was between '68 and '99 and a lot has improved since then... So we'll ignore that one for now... But it gets worse!!! The next one I read about survival rates said Patients with synovial sarcoma less than 5 cm in size has a cancer-specific survival rate at 10 years of 100%, compared with a 10-year survival rate of 32% and 0% for those with sarcoma 5 to 10 cm and greater than 10 cm, respectively..... MINE WAS 17cm!!!!!! Uh oh.. And as if that wasn't bad enough it also said Patients with a clean margin of excision were found to have a 10-year cancer-specific survival rate of 43%, compared with 0% for those with microscopic positive margins... Which I had. Fucksticks!!
Why did I read this stuff?!? I've been putting it off for so long, why did I crumble tonight. I guess it's best to know so you can be realistic. But there's so many factors that make each case different, my oncologist said the fact it was growing in to my chest cavity without much pressure on it might work in my favour....?
Pffft. I'm annoyed at myself. I thought I could relax a bit after two years and forget all about it after five... I must have made that up though...? Who knows. I seemed to think that's what my onc said.
Sorry, this is a totally crap post. Especially since I say this blog is to give people in my situation hope... But the truth is having cancer is just shit some days, and you do stupid stuff like this. Then other days you count your blessings and get on with it. There are LOADS of survivors and treatments are always getting better so don't be disheartened. And don't read stuff on the Internet. And if your tumour was less than 5cm and you had clear margins - REJOICE! I'm going to ask my oncologist all about it next month at my clinic and get the proper up to date answers..which will hopefully be "patients with tumours in their pleural space called Michelle who suffer from anxiety have a 120% survival rate."
I love blogging, I feel better already! I AM so lucky, this time two years ago I was just hoping I could hear my son say mummy, and now he's telling me off and all sorts. I need to stop being so pessimistic.
x
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