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 13 May 2013
And the beat goes on...
I'm rubbish at updating my blog these days. I don't find time to do much at all really. Anyway, I had an x ray in march, which was fine, and I think I have one next month. I've been getting a pain in a new place in my chest but its not breathing related pain like my tumour was and its similar to a pain that I had at the bottom of my lung before, which was nothing... So I'm not TOO worried. But still quite eager to get my x ray. I'm still trying to talk Davy into becoming a sonographer so we can buy an ultra sound machine and just check as we please.. Anyway, not much news on the cancer front.. Which is GREAT news!
I've been working loads and loads and loads, and although I love the work, I want out!! I'm out the house for about eleven hours a day. After everything that's happened I don't want this. Family is the most important thing. if it means getting rid of our wee pony, not eating out as much or going on as many trips away but having much more quality time together, a home that's a sanctuary and a mother and wife who makes things easy and fills ye with love then I'd much rather leave and focus on those things. I'm just a bit of a stress head when I'm home and its not good. Amazingly a part time job has come up in my favourite district, with the team I'd LOVE to work for. So the application deadline is Wednesday, mine is already in. I'll see how that goes, if I get in.. Well that would just be perfect!! If not, I'm going to explain how I'm feeling to my boss and probably hand in my notice. I'd rather not, I don't want to leave, but I can't keep working this much. I want to be with my wee boy while he's growing, before he's off to school! I really hope I get the part time job. I know that when my time comes, whether I'm young or old, knowing I did my best being a mother and wife will make me happy and what I achieved at work won't matter.. Unless I worked too much, I know I'd regret the hell outta that! I seen a picture of my mum and it made me think how awesome it is to have a great mum, who you under appreciate until you need her then you remember how amazing she is. And when you move out and you realise she made everything so easy and kept things ticking over. I want to be a better wife too, Davy deserves it. I think I've been thinking about myself too much recently, what's important and what makes an impact is what I give to others. Love and compassion is what really matters and I want to have it on tap for my family. I don't want to come home from work and be a stress head in a bad mood anymore. So... That's that!
A guy whose blog I've been following since my diagnosis.. The only blog I've ever followed.. Passed on not so long ago. It put things into perspective, as his blog has done so many times. I keep having stupid fights with Davy about trivial things and its so pointless, time is so precious! I just wanted to mention him because he's been such a huge part of this whole journey I've had and helped me so much despite never even having met him! I think that had a lot to do with me thinking about all the above stuff again and I'm really glad it did. Anyway, he's a legend and I'm so glad I found his blog.
Until next time... Hopefully it will be equally as un eventful on the cancer front! I'm going on holiday next week :) :) first stop the folk festival on the island of orkney, then a trip down the west coast in the camper van, then off to the south of France. Can't wait! It flippin snowed again today!! What is going on?!? This time last year we went on a camper van trip and it was over 25 degrees every day.
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
Thursday 10 January 2013
A wonderful, relieving start to 2013!
So, I had my six monthly scan (a few anxiety ridden weeks late) just before Christmas, but because of the holiday I had to wait until the 3rd of Jan for the results. The festive season was perhaps a little more appreciated because of the thoughts and feelings I had and I just wanted to be with my family. When I'm worried like that I just feel like being a wee hermit. Once again though, all is well. Nothing has shown up on the scan and I'm feeling fine!
In my usual scan time freak out Style I bought another book about dying. This one was 'Proof of heaven' by Dr Eben Alexander. It's the best I've read so far. I'm not quite finished but its really helped me believe that we pass on, and don't really die with our bodies. Which is something I've always wanted to believe but found it hard to. Not that it makes me feel any less attached to my life here, but I'm working on that, and acceptance. I know I might not need to face death at a young age anymore, but I'm sure these are things I should learn about anyway. And consciousness, I want to learn more about consciousness.
Anyway, life is sweet. Robin is learning to talk and you can tell him what to sing a song about, and he sings the word over and over again whilst dancing or playing an instrument. He's the best wee boy ever, I can't believe how lucky we are. When I'm fretting about stupid things in work, I just think about him and then I don't care anymore :) working is a pain, I hate being away from robin so much, especially since my new job is 44 hours a week. But we have quality time before bed and the salary is allowing us do to awesome family things like get our wee pony!
I'm rambling! This blog is about cancer. Which it seems at the moment there's no evidence of, in my body.
Long may I continue :)
And here's a picture of my beautiful wee boy, just cause he's awesome and I want to show him off!
In my usual scan time freak out Style I bought another book about dying. This one was 'Proof of heaven' by Dr Eben Alexander. It's the best I've read so far. I'm not quite finished but its really helped me believe that we pass on, and don't really die with our bodies. Which is something I've always wanted to believe but found it hard to. Not that it makes me feel any less attached to my life here, but I'm working on that, and acceptance. I know I might not need to face death at a young age anymore, but I'm sure these are things I should learn about anyway. And consciousness, I want to learn more about consciousness.
Anyway, life is sweet. Robin is learning to talk and you can tell him what to sing a song about, and he sings the word over and over again whilst dancing or playing an instrument. He's the best wee boy ever, I can't believe how lucky we are. When I'm fretting about stupid things in work, I just think about him and then I don't care anymore :) working is a pain, I hate being away from robin so much, especially since my new job is 44 hours a week. But we have quality time before bed and the salary is allowing us do to awesome family things like get our wee pony!
I'm rambling! This blog is about cancer. Which it seems at the moment there's no evidence of, in my body.
Long may I continue :)
And here's a picture of my beautiful wee boy, just cause he's awesome and I want to show him off!
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