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 12 January 2016
Scanxiety.
It's that time again. I got my appointments through. Had an MRI today and i'm having a CT on Thursday. Hoping to get my results a week on Thursday so we can take off just after. Is it just me or do you feel aches/pains/differences more... so much more... around scan time? I should write it down, the stuff I freak out about as i'm sure it's always the same. "I have this weird feeling in my chest, I don't usually have that!" always seems to be my chat around scan time. Hopefully, once again, it's just in my mind.
I often feel like i'm dealing with things alright. Then when i'm waiting on results I start thinking about how "this can't be the one where it's spread, i've still got loads to do!" At some point it IS going to be the one where it's spread, or the dormant bits are growing again, and i'm not going to have a lot of time. I really need to get prepared. It's hard to feel like preparing for death is a high priority because I feel fine (to an extent). But, like what happens to a lot of people, all of a sudden things will change. No matter how unprepared I am and what I still "have" to do. I think i'll try and spend one hour a day doing the things I want to do before it's too late. Finish making the big blanket, make some more family albums, write the letters I need to write. The main thing I want to do though is enjoy my time and spend it with Robin, but the other things are important too and I need to remember that. Those things will be all that are left for him as the memories won't last, he's too little. I was thinking today about how my nana died when I was around 12 and I can hardly remember her. I remember funny little things like how she clicked her nails, but I can't remember HER, or anything we did, or how she spoke. Robin is only five. So its important to take time out to try and leave something for him. My good friend who lost his mum when he was little told me the thing that is dearest to him is her diary, because he can't remember her and It's a way to get to know her. He loves the bits where she mentions him. I don't keep a diary, I should!
Here's something that heart breakingly funny... So I read a lot about whether or not you should speak to a five year old about having a terminal illness and the general consensus is yes. So i did. I told Robin that just now we're keeping my cancer at bay but its a smart disease and one day it will figure out how to grow again and there won't be any other medicine I can try. He asked if I would die and I said yes. I told him I felt sad I couldn't be there for him growing up but that he'd have daddy who is super cool and loving. Robin tells me "That's ok mummy, when you die Daddy will marry someone else and I'll get a new mum."Haha... thanks wee man. To be fair I'm glad he wasn't upset, but I also felt a bit put out! (not seriously, he's five!). He has a rugrats DVD about a kid who doesn't have a mum and its all about his dad meeting a nice new woman so he can have a mum so i'm guessing that's where he got it from! To be fair though, I hope Davy does meet someone that will grow to love Robin, so that he has a woman in his life growing up. Someone who cares about him and loves him like a mother. Some of my friends are step mums and their step sons are lucky to have them. I can only hope Robin is that lucky!
Roll on next thursday so I know the score and I can hopefully get excited about our trip. The dog has his doggy passport, the van is almost complete. We're good to go... just need a route... or do we?
M x
I often feel like i'm dealing with things alright. Then when i'm waiting on results I start thinking about how "this can't be the one where it's spread, i've still got loads to do!" At some point it IS going to be the one where it's spread, or the dormant bits are growing again, and i'm not going to have a lot of time. I really need to get prepared. It's hard to feel like preparing for death is a high priority because I feel fine (to an extent). But, like what happens to a lot of people, all of a sudden things will change. No matter how unprepared I am and what I still "have" to do. I think i'll try and spend one hour a day doing the things I want to do before it's too late. Finish making the big blanket, make some more family albums, write the letters I need to write. The main thing I want to do though is enjoy my time and spend it with Robin, but the other things are important too and I need to remember that. Those things will be all that are left for him as the memories won't last, he's too little. I was thinking today about how my nana died when I was around 12 and I can hardly remember her. I remember funny little things like how she clicked her nails, but I can't remember HER, or anything we did, or how she spoke. Robin is only five. So its important to take time out to try and leave something for him. My good friend who lost his mum when he was little told me the thing that is dearest to him is her diary, because he can't remember her and It's a way to get to know her. He loves the bits where she mentions him. I don't keep a diary, I should!
Here's something that heart breakingly funny... So I read a lot about whether or not you should speak to a five year old about having a terminal illness and the general consensus is yes. So i did. I told Robin that just now we're keeping my cancer at bay but its a smart disease and one day it will figure out how to grow again and there won't be any other medicine I can try. He asked if I would die and I said yes. I told him I felt sad I couldn't be there for him growing up but that he'd have daddy who is super cool and loving. Robin tells me "That's ok mummy, when you die Daddy will marry someone else and I'll get a new mum."Haha... thanks wee man. To be fair I'm glad he wasn't upset, but I also felt a bit put out! (not seriously, he's five!). He has a rugrats DVD about a kid who doesn't have a mum and its all about his dad meeting a nice new woman so he can have a mum so i'm guessing that's where he got it from! To be fair though, I hope Davy does meet someone that will grow to love Robin, so that he has a woman in his life growing up. Someone who cares about him and loves him like a mother. Some of my friends are step mums and their step sons are lucky to have them. I can only hope Robin is that lucky!
Roll on next thursday so I know the score and I can hopefully get excited about our trip. The dog has his doggy passport, the van is almost complete. We're good to go... just need a route... or do we?
M x
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Hi Michelle,
ReplyDeleteI am still reading...don't really know what to post other than to say i really hope that you can make that trip..and that the rest of your journey can continue with hope and some fantastic times.
Wishing you the very best
Dougie