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.
Friday 20 November 2015
Next step..
So the latest next step is radiotherapy.
I really hope it does something. My tumour was on the inside last time, now that I can feel it growing on the outside its quite scary, to watch it grow and know I'm not doing anything to stop it. As of yesterday we started RT so I feel a little better we're doing something. Although I'm not sure what we're aiming for and what the likeliness of achieving it is... my guess is we're aiming for stability/slowing and I'm hoping the odds are high it'll have an effect. I just feel good to know that SOMETHING is happening, as it grows so fast and is pushing on my liver and not too far from my spine.
In other news, my oncologist agreed to talk to my surgeon again. I'm not getting my hopes up about it at all (well maybe a little). I just asked if he would consider having a go as everything else was stable and this big blob is going to kill me. So can't we just take it out? Its bigger than when he said he 'could' take it out though so who knows. I'd be losing at least four ribs but thats what he said before. Anyway, thats a turn up for the books :)
Its Robins birthday next month, which will also be five years since diagnosis. Which is amazing. I remember when he was a few weeks old and they were saying it was terminal, saying, I just wish I could be here till he's five, see him go to school, hear him talk, interact with him... and i've got to do all of those things! And he might even remember me now. We've had an amazing five years and made some beautiful memories (and took some good pictures just in case he forgets). Although he's not at school, we deferred him for some extra family time, which I think we're both really happy about! But yeah, fifth birthday party organisation in full flow. We've also booked a huge house in the highlands for christmas, so we can spend it with all the family. I'm so excited about this, and very happy Robin will have some company his own age on christmas eve to get all excited with like I did with my siblings :)
Life is good. (and crap)
x
I really hope it does something. My tumour was on the inside last time, now that I can feel it growing on the outside its quite scary, to watch it grow and know I'm not doing anything to stop it. As of yesterday we started RT so I feel a little better we're doing something. Although I'm not sure what we're aiming for and what the likeliness of achieving it is... my guess is we're aiming for stability/slowing and I'm hoping the odds are high it'll have an effect. I just feel good to know that SOMETHING is happening, as it grows so fast and is pushing on my liver and not too far from my spine.
In other news, my oncologist agreed to talk to my surgeon again. I'm not getting my hopes up about it at all (well maybe a little). I just asked if he would consider having a go as everything else was stable and this big blob is going to kill me. So can't we just take it out? Its bigger than when he said he 'could' take it out though so who knows. I'd be losing at least four ribs but thats what he said before. Anyway, thats a turn up for the books :)
Its Robins birthday next month, which will also be five years since diagnosis. Which is amazing. I remember when he was a few weeks old and they were saying it was terminal, saying, I just wish I could be here till he's five, see him go to school, hear him talk, interact with him... and i've got to do all of those things! And he might even remember me now. We've had an amazing five years and made some beautiful memories (and took some good pictures just in case he forgets). Although he's not at school, we deferred him for some extra family time, which I think we're both really happy about! But yeah, fifth birthday party organisation in full flow. We've also booked a huge house in the highlands for christmas, so we can spend it with all the family. I'm so excited about this, and very happy Robin will have some company his own age on christmas eve to get all excited with like I did with my siblings :)
Life is good. (and crap)
x
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