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.
Saturday 28 November 2015
Stuck between death and a dead place.
Decisions - it's so hard to make a decision when the the only certainty of every outcome is death. Although I suppose really.. Death is the only thing anyone can be certain about in life. But, yeah, it's hard to decide. Do I try chemo that may or may not be effective for some extra time? Do I stop treatment and let my fast growing tumour grow in to my liver, stomach and spine? Do I risk the surgery which has a higher mortality rate than I'd like even though I have stable cancer elsewhere that could potentially kick off at any point after the surgery? I want surgery, but i think I have blinkers on. I’ve always wanted surgery because its generally been the only hope of a cure until they found out I had cancerous cells elsewhere so there is no cure… Maybe it’s not the wisest decision now. If it went well.. and the other cancer remained stable, I could potentially get another couple of years out of it. If my tumour was growing as fast as it was before I started radio, I wouldn’t have long left at all, so I'd quite like to get it out.. please, thank you!
I met with my oncologist to get bloods and check my skin etc.. everything seems fine. Then she went to say bye so I said "I take it you didn't hear from Mr Kirk then?" .... "well actually I did, he's hard to get a straight answer from. He says things like "this surgery has a high mortality rate." Then said something like "But I'll do it if we need to." This didn't really answer anything for me. Although He didn't say no which was good, I said that to my onc and she just sort of made a face. She's very aloof about it all. I think it's her that needs convincing more than him. I think I need to meet with him to discuss it and make an informed decision!
Anyway. Too many choices. For now I choose life.
x
P.S. My tumour is a lot smaller since starting radiotherapy! :oD
I met with my oncologist to get bloods and check my skin etc.. everything seems fine. Then she went to say bye so I said "I take it you didn't hear from Mr Kirk then?" .... "well actually I did, he's hard to get a straight answer from. He says things like "this surgery has a high mortality rate." Then said something like "But I'll do it if we need to." This didn't really answer anything for me. Although He didn't say no which was good, I said that to my onc and she just sort of made a face. She's very aloof about it all. I think it's her that needs convincing more than him. I think I need to meet with him to discuss it and make an informed decision!
Anyway. Too many choices. For now I choose life.
x
P.S. My tumour is a lot smaller since starting radiotherapy! :oD
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Just so you know someone is out here, i am glad to see you posting again after the break since April, the pictures of you with your boy are super..being a Glaswegian now in the south of England i enjoy your tales of the Highlands.
ReplyDeleteChoosing life is good, I have a less serious sarcoma( 15 months on), and initially spent too much time worrying about death, now i too try to choose a good life , but of course i do still obsess about Sarcoma
Glad to see your tumour is getting smaller..I will continue to look in
Best wishes
Dougie
Hi Dougie, How wonderful to hear from someone new, and a fellow glasweigan at that! :) I often feel like i'm the only person who reads my blog. I'm not keen on sharing the reality of it all with my family etc.
DeleteYou're right, it is good to choose life, but it can't be the way it is all the time. Being in the moment and appreciating the now is so important, but sometimes the now is just.. crap! And if you didn't spend some time obsessing over sarcoma i'd suspect you weren't dealing with reality so I figure thats totally healthy and normal.
I hope you're keeping well and enjoying life. Thanks for the message :)
Michell