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.
Tuesday 30 August 2011
The story so far.. April 2011
Two days later they get the results from my cultures and it's quite an aggressive infection so they change the antibiotics which means I need to stay in for another five days to get it through my line :(
I've been coping ok cause I know it's for the best and I want to get better and keep getting chemo, but it's really starting to wear thin now. The thing that gets me most is missing out on Robins bedtime routine, I really love bathing him, feeding him, watching him get all sleepy and soothing him to sleep. Also, i'm missing all his morning smiles, he always smiles most in the morning.
5/4/11
I'm just feeling really down at the moment because I got a copy of my CT results. I have a blood clot in my gammy lung, i'm not too worried or bothered about this because it's tiny and i'm pretty sure i'll get rid of it with the fragmin injections. What IS worrying me is reading about how much my tumour has decreased in size. I never really realised how big it was until now, from the x rays I thought it was about the size of an orange. The fact it has decreased in size by more than half doesn't seem so great now that I know there's still a 15.2 x 12.5 x 4.6 cm tumour in there. Also it appears the angle it shows on an x ray is the bit that is decreasing the most so I was under the impression the chemo was working much better than it really is. The most important bit is the length and breadth on my chest wall as this is the bit that I believe causes the surgeon problems and the reason it is inoperable. It appears the length has only decreased by 2cm, so I don't feel as hopeful now that the surgeon might change his mind.
I'm just feeling really down at the moment because I got a copy of my CT results. I have a blood clot in my gammy lung, i'm not too worried or bothered about this because it's tiny and i'm pretty sure i'll get rid of it with the fragmin injections. What IS worrying me is reading about how much my tumour has decreased in size. I never really realised how big it was until now, from the x rays I thought it was about the size of an orange. The fact it has decreased in size by more than half doesn't seem so great now that I know there's still a 15.2 x 12.5 x 4.6 cm tumour in there. Also it appears the angle it shows on an x ray is the bit that is decreasing the most so I was under the impression the chemo was working much better than it really is. The most important bit is the length and breadth on my chest wall as this is the bit that I believe causes the surgeon problems and the reason it is inoperable. It appears the length has only decreased by 2cm, so I don't feel as hopeful now that the surgeon might change his mind.
Buuuuuut, the reality is I don't have a clue and so my medical opinion isn't worth much, therefore I may as well just enjoy life while I wait to find out. Although that's not so easy when you're stuck in a tiny wee room away from your family attached to a machine that alarms all night long for no apparent reason.
Some days i'm just gonna feel really bummed out and today is one of 'em. I think after spending a week in hospital despite feeling fine ad then getting some bad news it's allowed. Although I was a total grumpy bugger to Davy and my family and they definitely don't deserve that. I just felt really upset about everything and I don't want to show them i'm afraid i'm going to die and it's upsetting me because then they'll be upset. So it comes out as anger and I just told them all to leave me alone. I couldn't tell my mum what I had found out about today because she feels so good about how we thought the chemo had been working. I tell Davy everything though.
I just need to remember how lucky I am to have such a wonderful husband and son. That's the most important thing, that is my here and now and it brings me endless joy! :) One day soon we'll be back out in the countryside together again and this will all be irrelevant. I can't wait!
7/4/11
Today I will be mostly focusing on being positive. Otherwise I will lose my mind completely after finding out that my seven day incarceration has been for nothing as they are now going to take my hickman line out and replace it anyway!
I just need to remember how lucky I am to have such a wonderful husband and son. That's the most important thing, that is my here and now and it brings me endless joy! :) One day soon we'll be back out in the countryside together again and this will all be irrelevant. I can't wait!
7/4/11
Today I will be mostly focusing on being positive. Otherwise I will lose my mind completely after finding out that my seven day incarceration has been for nothing as they are now going to take my hickman line out and replace it anyway!
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