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.
Thursday 11 August 2011
The story so far.. September 2010
It's September, I'm at work and feeling pretty breathless and I have a pain in my shoulder which feels too much like when my lung collapsed a couple of years back. I'm five months pregnant though and working on the chainsaw all day so I figure it's just a mixture of hard graft and my uterus pushing on my diaphragm. I decide it's time to stop felling tree's till after the baby is born and start taking it easy at work.
The pain and discomfort doesn't really go away. I'm pretty sure my lung has collapsed which is strange because I had a pleurodesis two years ago after a series of spontaneous pneumothorax. The next day I go to the hospital and get a chest x-ray, the doctor comes back and says "The good new is your lung hasn't collapsed but there is something in there." "Something more sinister?" I ask and he smiles and says it's probably just some scar tissue or fluid from my operation. So I have an appointment to see the lung specialist who says she hasn't seen anything like it before, but is reluctant to give me a biopsy because i'm pregnant so she opts for an MRI. I make the stupid mistake of searching for "shadow in lung post pleurodesis" on google and read a story of a man who's talc pleurodesis caused cancer in his pleural space and he died four months later. My head is all over the place now and I'm getting upset. From the MRI she says she is "99.9% sure it's benign" So i've just to see how I get on with my pregnancy and we will deal with it afterwards. Phew!!
A week later I wake in the middle of the night in quite severe pain and each breath inward causes a sharp pain across my shoulder. I pace my room telling my boyfriend "something is really wrong." The next morning I call the lung specialist and she says if it's not worse than it's been before then I should grin and bare it as they'll just give me another x ray which isn't good for the baby. I struggle to decide whether the pain is worse than before or not and in the end I stay at home.
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