It might be that they (the NHS) have to apply for funding for treatment every time but I know about this one. I know that I'm expensive.Taxes for me are such a small part of the gratitude I feel to being able to get the support and treatment I get. I've always felt privileged and blessed to have the NHS there for me. I don't know how long it can last.
I imagine this is a tiny part of what Americans feel or fear. Not knowing if you can afford the best cure, even the right scan. It's bad enough having to know you need 6 monthly scans and various other blood tests etc. When I get worried about an odd feeling, I, well, worry but I don't worry that when I ask my GP or my genetic nurse to get some advice, do a test and help and I don't expect that I'll have to find the cash.
What do I do this time, what do I do if they say," oops we;'ve really run out of money", or "Sorry the budget just won't stretch that far and there are other people who need it more."
And naturally I'm still waiting. Oh the waiting. Pals, friends all resisting the urge to ask, "do you have a date yet." and then they don't, I suspect because they worry I have got a date and I'm not telling them, or they missed the email or just because, unlike me, they haven't practice patience quite as often.
I'll probably send another email if I don't have a date by Wednesday.
Sunday, September 27, 2015
Monday, September 14, 2015
Melt down Monday
Had a wobble today, the straw that broke the camels back? It was incompetent staff, a waste of my time and their intellect.
It shocked a couple of people - it left them unsure what to do - they could scoop me up and hold me and let me sob which is what I wanted, what I felt I needed, I sat alone and was watched.Their indecision? Well a myriad of reasons. I sucked it up... that's what you do.
One of the watchers was a friend/co-worker who perhaps hasn't seen it before, as I've always managed to hide it better, said I was like one of those penny slot machines, loads goes in, and keeps going in and then all of a sudden that one penny sends a whole load of them crashing through the slot.
It made so much sense, even the fact that you don't even notice where the pennies land and the tray doesn't look full in places, you think, loads more will go and then - oh but not there one more there and then it lands and nope, actually it's holding and the unexpected can bring it all down around you.
If I'd let myself today I think I could have cried for an hour but I was at work and I had to get on so I picked up all those pennies (minus a couple that escaped under the machine) and quickly shoved them back in the slot.
Later that day I said fuck a lot in my office, to a colleague that finds that quite funny, when people just wouldn't stop coming to my door even though I wasn't the person who they should have been bothering. A couple of pennies dropped.
I taught a good lesson, they, the students, made me laugh, one dropped
I called someone and we talked, one more
I cried on the way home, a couple more
I'm writing this - another one
Trouble is, as each one drops more seem to go in while I'm home or thinking about my enemy.
It shocked a couple of people - it left them unsure what to do - they could scoop me up and hold me and let me sob which is what I wanted, what I felt I needed, I sat alone and was watched.Their indecision? Well a myriad of reasons. I sucked it up... that's what you do.
One of the watchers was a friend/co-worker who perhaps hasn't seen it before, as I've always managed to hide it better, said I was like one of those penny slot machines, loads goes in, and keeps going in and then all of a sudden that one penny sends a whole load of them crashing through the slot.
It made so much sense, even the fact that you don't even notice where the pennies land and the tray doesn't look full in places, you think, loads more will go and then - oh but not there one more there and then it lands and nope, actually it's holding and the unexpected can bring it all down around you.
If I'd let myself today I think I could have cried for an hour but I was at work and I had to get on so I picked up all those pennies (minus a couple that escaped under the machine) and quickly shoved them back in the slot.
Later that day I said fuck a lot in my office, to a colleague that finds that quite funny, when people just wouldn't stop coming to my door even though I wasn't the person who they should have been bothering. A couple of pennies dropped.
I taught a good lesson, they, the students, made me laugh, one dropped
I called someone and we talked, one more
I cried on the way home, a couple more
I'm writing this - another one
Trouble is, as each one drops more seem to go in while I'm home or thinking about my enemy.
Thursday, September 10, 2015
Hiccups
I've got hiccups.
I've been getting them a lot over the last few month, perhaps more. I get them at least 4 or 5 times a day, more today.
The interesting thing about hiccups is that there is a group of people who feel compelled to let you know you have hiccups. Then there is a larger group who feel they need to tell you how to get rid of them.
As tempting as it is to say 'it's my brain tumour.' I tend not to, I tend to say yes. I never take their advice. Those people are convinced their way will work and that you have not thought of it yourself, I've never really seen why people feel this is a bodily function that we should try and stop.
Someone pointed out that it might be because we need a thing to say, like ooh pardon or bless you but we don't have a formal hiccups reaction.
I thought that was a good point.
I've been getting them a lot over the last few month, perhaps more. I get them at least 4 or 5 times a day, more today.
The interesting thing about hiccups is that there is a group of people who feel compelled to let you know you have hiccups. Then there is a larger group who feel they need to tell you how to get rid of them.
As tempting as it is to say 'it's my brain tumour.' I tend not to, I tend to say yes. I never take their advice. Those people are convinced their way will work and that you have not thought of it yourself, I've never really seen why people feel this is a bodily function that we should try and stop.
Someone pointed out that it might be because we need a thing to say, like ooh pardon or bless you but we don't have a formal hiccups reaction.
I thought that was a good point.
Tuesday, September 08, 2015
zap away
We met with the man... dad and I and we have both signed the consent forms. The big yellow sheet that means you understand that you are letting them do something to you.
I'm currently having my first online CBT session. So far so like a blog!
I'm currently having my first online CBT session. So far so like a blog!
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