:-)
About the worst day I have had in terms of head stuff. I'm trying to work out how I am the villain of the piece but then I don't do beat around the bush or gloss over or some other sort of "it didn't really happen" stuff.
You know if you ask me a question you will get the answer you don't want so why ask me. I go back to the curse of the INTJ (Myers Briggs Personality Type). I don't see things other than what they are, I cut through all the bull and get to the point. In my eyes if you ask me whether something is black or white then it will be one of those it wont be anything else - I don't deal in anything other than that.
It annoys the hell out of me when I'm asked something and I spend time analysing and coming back with a reasoned and well thought through argument for it to be ignored. The fun part is that you'll get even more annoyed with me when it gets to the point of "I told you so!"
So - bad day? You bet. I've got a house full of moody women and although I managed to get out for an hour with a friend for a beer and a get it off my chest session when I got back all I got was "you're back early!"
Anyway, back to work tomorrow. Woe betide anyone who wants to give me grief tomorrow. I really have had a belly full of that today.
Tuesday, September 09, 2008
Dealing With It!
How difficult is it to talk to someone who is dying? How about expressing your feelings to a friend who's loved one is seriously ill. Do you know what to say? Do you feel inadequate and can't put the right words together?
That is how people deal with me when they know what I have or rather had.
Then there is the other side of the coin. Only if you have had something like this can you begin to get near to understand what it does to you mentally and physically. You put up with a hell of a lot of things and your mind has its own battles with itself inside your head and sometimes you just have to let it do that. The fear and the terrible dreams and the (lets not beat about the bush here) the pain of it can best be described as indescribable (I have always wanted to use that phrase and had to work it in somewhere).
The worst bit is acting normally and then getting treated normally because actually, you wouldn't mind a bit of sympathy sometime. But we all know where sympathy is placed in the Dictionary (if you don't it is between Sh1t and Syphilis) - it's an old saying we used to use.
So what am I banging on about? Well I'm getting some of the anger out of my system. You see, it's actually another problem when dealing with it and that is the very real worry that it will come back, that - then - at best you may have to go through all of this again or at worst - well you don't want to thing of that but it could be that would be possible. With BC there are some other avenues for sure, like get it all cut out and use a bag which - if it keeps you alive - is acceptable I think.
No the issue is - am I more susceptible to cancer from now on or have I got past that. I've discussed that your personality doesn't change but your attitude does and your outlook does and those who know you well either get used to it or they don't. I can't say I always like the "new me", it can be quite assertive and also quite dismissive, critical and I don't do messing around or dithering or procrastination. I'm hard on myself because my "performance" has dropped off and my brain isn't as fast as it used to be and physically I'm a mere shadow of my former self but all these things are adding up to do one of two things:
Either you like me like this and get it
You can't understand it and don't like me.
The latter lot need to decide what it is to be and stop pussy footing around and perhaps I need to take the initiative a bit more.
Whatever it is, the depth of all the issues that face anyone in this situation really does lead you to consider your own mortality, then, what you want to do about it. Those who don't "get it" may not understand that as a Cancer Survivor, every day is far more precious than before, things sometime cannot wait as you may not see them done at all. Other people's petty bickering and flirting (by that I mean just not getting on and making a decision) all don't have a place. I see it at work and wonder why the huge fuss over nothing? What earthly good can come of wasting your life in discussions or arguing about what font size to write a document in and so on.
Talk to a group of Cancer sufferers and those who have recovered and their whole outlook on life is different. I connect with these people easily now and immediately you find out that they have or have had Cancer, there is a rapport that comes from knowing this stuff "ain't for sissies" and that they will understand the issues you are having with non sufferers in general. It doesn't make things at all easy as relationships you have had for a long time I have found begin to suffer.
That is how people deal with me when they know what I have or rather had.
Then there is the other side of the coin. Only if you have had something like this can you begin to get near to understand what it does to you mentally and physically. You put up with a hell of a lot of things and your mind has its own battles with itself inside your head and sometimes you just have to let it do that. The fear and the terrible dreams and the (lets not beat about the bush here) the pain of it can best be described as indescribable (I have always wanted to use that phrase and had to work it in somewhere).
The worst bit is acting normally and then getting treated normally because actually, you wouldn't mind a bit of sympathy sometime. But we all know where sympathy is placed in the Dictionary (if you don't it is between Sh1t and Syphilis) - it's an old saying we used to use.
So what am I banging on about? Well I'm getting some of the anger out of my system. You see, it's actually another problem when dealing with it and that is the very real worry that it will come back, that - then - at best you may have to go through all of this again or at worst - well you don't want to thing of that but it could be that would be possible. With BC there are some other avenues for sure, like get it all cut out and use a bag which - if it keeps you alive - is acceptable I think.
No the issue is - am I more susceptible to cancer from now on or have I got past that. I've discussed that your personality doesn't change but your attitude does and your outlook does and those who know you well either get used to it or they don't. I can't say I always like the "new me", it can be quite assertive and also quite dismissive, critical and I don't do messing around or dithering or procrastination. I'm hard on myself because my "performance" has dropped off and my brain isn't as fast as it used to be and physically I'm a mere shadow of my former self but all these things are adding up to do one of two things:
Either you like me like this and get it
You can't understand it and don't like me.
The latter lot need to decide what it is to be and stop pussy footing around and perhaps I need to take the initiative a bit more.
Whatever it is, the depth of all the issues that face anyone in this situation really does lead you to consider your own mortality, then, what you want to do about it. Those who don't "get it" may not understand that as a Cancer Survivor, every day is far more precious than before, things sometime cannot wait as you may not see them done at all. Other people's petty bickering and flirting (by that I mean just not getting on and making a decision) all don't have a place. I see it at work and wonder why the huge fuss over nothing? What earthly good can come of wasting your life in discussions or arguing about what font size to write a document in and so on.
Talk to a group of Cancer sufferers and those who have recovered and their whole outlook on life is different. I connect with these people easily now and immediately you find out that they have or have had Cancer, there is a rapport that comes from knowing this stuff "ain't for sissies" and that they will understand the issues you are having with non sufferers in general. It doesn't make things at all easy as relationships you have had for a long time I have found begin to suffer.
And Another Thing
Only one more left to go. Then in three months an operation (Yuk) but that should give them sufficient data to see whether I have won the lottery or not.
So far it has all been good news. The longer you go without recurrence the better it is. It has been close to 13 months now and by December 17 months clear - well with no cancer there. Same thing.
Could it be that this whole episode can be wrapped up and put in the "experience" cupboard? I do hope so.
The problems now are dealing with it - next post deals with what I mean.
So far it has all been good news. The longer you go without recurrence the better it is. It has been close to 13 months now and by December 17 months clear - well with no cancer there. Same thing.
Could it be that this whole episode can be wrapped up and put in the "experience" cupboard? I do hope so.
The problems now are dealing with it - next post deals with what I mean.
The Good, the Bad and the Ugly
Yep,
Good - Was OK and apart from a little discomfort on instillation all was OK a little bit sore and the usual this morning but it wasn't anywhere near as bad as I expected this time.
Bad - "A" spent 4 hours on her first day at Uni and decided she doesn't want to carry on.
Bad - Whilst I am in the worst state of this treatment (about hours 4 to 6 in) they want to talk to me about it. Ugly - how it got when I lost my temper. At about that time, I have aches in my joints, minor cramps in my arms and legs, muscle spasms in my bladder and my middle feels sore, let alone my marriage tackle feels like it has been kicked inside my body. The very last thing I need is some "decision" to make and it isn't my decision anyway, if that is what they want to do, get on with it. Just leave me alone to stew - I feel like sh1te anyway, don't make me feel any worse than that. As you can tell I wasn't happy - not with the news itself, that made me feel sad really but, I'm not the one there and whilst I may ask awkward questions and be less than amused by how quickly defeat was admitted - it isn't exactly rocket science if you don't like the people and you don't like your flat mates etc.
Ugly - No one listens to my advice anyway, they ask a question, don't get the answer they want and go off and do what they planned to do in the first place. To say I needed that sort of conversation as I was doing my wriggling about thing would be an understatement. I can barely combat all the twinges and spasms going on in my body let alone think straight.
So give me a break. I wouldn't go and ask an RTA victim directions, would you?
Good - Was OK and apart from a little discomfort on instillation all was OK a little bit sore and the usual this morning but it wasn't anywhere near as bad as I expected this time.
Bad - "A" spent 4 hours on her first day at Uni and decided she doesn't want to carry on.
Bad - Whilst I am in the worst state of this treatment (about hours 4 to 6 in) they want to talk to me about it. Ugly - how it got when I lost my temper. At about that time, I have aches in my joints, minor cramps in my arms and legs, muscle spasms in my bladder and my middle feels sore, let alone my marriage tackle feels like it has been kicked inside my body. The very last thing I need is some "decision" to make and it isn't my decision anyway, if that is what they want to do, get on with it. Just leave me alone to stew - I feel like sh1te anyway, don't make me feel any worse than that. As you can tell I wasn't happy - not with the news itself, that made me feel sad really but, I'm not the one there and whilst I may ask awkward questions and be less than amused by how quickly defeat was admitted - it isn't exactly rocket science if you don't like the people and you don't like your flat mates etc.
Ugly - No one listens to my advice anyway, they ask a question, don't get the answer they want and go off and do what they planned to do in the first place. To say I needed that sort of conversation as I was doing my wriggling about thing would be an understatement. I can barely combat all the twinges and spasms going on in my body let alone think straight.
So give me a break. I wouldn't go and ask an RTA victim directions, would you?
Monday, September 08, 2008
Forgetful people
No matter how widely I tell people that I cannot take messages or talk to them or do anything when I am having this BCG treatment you still get the idiots who want to call or say didn't you get my e-mail and all that.
Drives you wild. I wonder if some people are just thick or stupid or both. Whatever it is, it is always them that have been put out by my lying in a darkened room. Selfish gits. :-)
Drives you wild. I wonder if some people are just thick or stupid or both. Whatever it is, it is always them that have been put out by my lying in a darkened room. Selfish gits. :-)
It is all downhill after today
Penultimate Treatment. A bit like the Olympic Stars saying - "It hasn't sunk in yet". It hasn't; but I am beginning to think the unthinkable, that perhaps in 2009 it will all be over.
At least I am in a better mood this morning. The crazy bit is that what I probably need to do is to be quite brutal to the people who cannot get organised and let me know on time and if they want to come along on Wednesday and they haven't informed me prior to the deadline that I just say NO. That will teach them! You can lead a Horse to water and all that.....
So, how is today going to be? Well, judging by this morning, I'm the one slightly stressed out and I really shouldn't be as I've done everything I can do and it is out of my hands now. I need to just wind down a few notches as I don't want to be tense when I get the treatment done. You don't want to be wound up or stressed out for that - no way.
I'll fire off some warning e-mails and C is pretty good if anyone phones up - she tells them that I I've had my treatment and I'm lying in a ball upstairs - "Do you really want me to disturb him?" Those that do, soon realise that the very last thing I want to be doing for about 24 hours is talking to anyone, not that I can often with the croaky voice I get with this. Funny side effects it gives you, the worst being the fuzzy brain when you hunt for words - it is really frustrating to find that you stop in mid ......
Sentence :-)
Right, doing the blog isn't going to help me complete my work so I had better get on.
At least I am in a better mood this morning. The crazy bit is that what I probably need to do is to be quite brutal to the people who cannot get organised and let me know on time and if they want to come along on Wednesday and they haven't informed me prior to the deadline that I just say NO. That will teach them! You can lead a Horse to water and all that.....
So, how is today going to be? Well, judging by this morning, I'm the one slightly stressed out and I really shouldn't be as I've done everything I can do and it is out of my hands now. I need to just wind down a few notches as I don't want to be tense when I get the treatment done. You don't want to be wound up or stressed out for that - no way.
I'll fire off some warning e-mails and C is pretty good if anyone phones up - she tells them that I I've had my treatment and I'm lying in a ball upstairs - "Do you really want me to disturb him?" Those that do, soon realise that the very last thing I want to be doing for about 24 hours is talking to anyone, not that I can often with the croaky voice I get with this. Funny side effects it gives you, the worst being the fuzzy brain when you hunt for words - it is really frustrating to find that you stop in mid ......
Sentence :-)
Right, doing the blog isn't going to help me complete my work so I had better get on.
Sunday, September 07, 2008
Today
I cant say that this weekend has been high up in my list of happy or enjoyable times. I'm under pressure to get some work done and I am not being helped because I haven't got answers back by today to enable me to do that. Treatment will prevent me actually getting things done in time.
I've had the trauma of A and C getting to University, deciding whether or not to stay at the Flat - gee thanks for that 1 year's rent down the toilet or not? As you know I really don't like indecisive people. Unfortunately the weekend of almost minute by minute U turns drove me nuts and even now I'm sure I haven't heard the last of that. A now has one of her flat mates turn up who she has taken an instant dislike to. Maybe it is just me, I've had to work with plenty of people I don't see eye to eye with but there you go.
Being a planned person it also doesn't help when things get ordered from me last minute and so generally I was pretty unimpressed by this weekend's goings on.
In the meantime, I have been trying to sort myself out and get ready for my Key Note speech on Thursday but again, people are missing the big picture and scratching at some minor detail and totally missing the point there. I need to tell someone tomorrow.
It all actually builds back to the treatment which will take me out for a day and a half. I need that time not because of anything I have failed to do but because everyone else around me has missed their deadlines, cannot make their minds up or are otherwise being priggs and they all want me to sort out their problems. Normally I would do so but I can't and I know that something is going to give later this week, I'm just not sure what. Certainly someone is going to get the sharp edge of my tongue if nothing else.
I've had the trauma of A and C getting to University, deciding whether or not to stay at the Flat - gee thanks for that 1 year's rent down the toilet or not? As you know I really don't like indecisive people. Unfortunately the weekend of almost minute by minute U turns drove me nuts and even now I'm sure I haven't heard the last of that. A now has one of her flat mates turn up who she has taken an instant dislike to. Maybe it is just me, I've had to work with plenty of people I don't see eye to eye with but there you go.
Being a planned person it also doesn't help when things get ordered from me last minute and so generally I was pretty unimpressed by this weekend's goings on.
In the meantime, I have been trying to sort myself out and get ready for my Key Note speech on Thursday but again, people are missing the big picture and scratching at some minor detail and totally missing the point there. I need to tell someone tomorrow.
It all actually builds back to the treatment which will take me out for a day and a half. I need that time not because of anything I have failed to do but because everyone else around me has missed their deadlines, cannot make their minds up or are otherwise being priggs and they all want me to sort out their problems. Normally I would do so but I can't and I know that something is going to give later this week, I'm just not sure what. Certainly someone is going to get the sharp edge of my tongue if nothing else.
Saturday, September 06, 2008
Getting ready
Yes Monday will be a bit of a landmark day I suppose, it will be my penultimate treatment and in a way I am beginning to get enthusiastic again about what I can do once this is a little further out of the way. The limitation being, I guess, my physical state but despite that, I really am looking forward to not having this treatment as an excuse. I know that the next 6 weeks or so will see a repeat of the side effects but, apart from the operation in December, that could be it for a while.
I'm sort of tired of not doing things and I am looking forward to getting some of my social life back.
The treatment does fuddle your brain though and sticking at things other than work seem to give me difficulty, I cannot really go beyond a couple of hours intensive brain work and less than that if it is physical without needing a break. I did manage to get some stuff done this morning but this afternoon I am struggling.
Time to go and read through my course notes for my Foundation course I think and map down what I'll need to be doing in the next 9 months of study.
I'm sort of tired of not doing things and I am looking forward to getting some of my social life back.
The treatment does fuddle your brain though and sticking at things other than work seem to give me difficulty, I cannot really go beyond a couple of hours intensive brain work and less than that if it is physical without needing a break. I did manage to get some stuff done this morning but this afternoon I am struggling.
Time to go and read through my course notes for my Foundation course I think and map down what I'll need to be doing in the next 9 months of study.
Somewhat unexpectedly
C has decided to stay down with A at her flat. Nice to give me 5 minutes notice I always think!
It also proved a little more than difficult to ferry the other child to her appointment this evening given I got 10 minutes notice that it was required and the fact, which after I had explained it, sunk in, that my car wasn't in fact in the driveway as they happened to have used it to move into the flat and if they looked out of their window would have seen my car a good many miles away from where it was needed to undertake the errand they had asked me to.
Noting like a plan and let's face it that was nothing like a plan as they also managed to leave their credit cards and cash here as well so not a lot got done at all.
What hacks me off is that no one even thought that through and then I get it in the neck!
Anyway, it is late and I'd best go to bed I suppose. I can have a real moan tomorrow if one or either of them gets back.
It also proved a little more than difficult to ferry the other child to her appointment this evening given I got 10 minutes notice that it was required and the fact, which after I had explained it, sunk in, that my car wasn't in fact in the driveway as they happened to have used it to move into the flat and if they looked out of their window would have seen my car a good many miles away from where it was needed to undertake the errand they had asked me to.
Noting like a plan and let's face it that was nothing like a plan as they also managed to leave their credit cards and cash here as well so not a lot got done at all.
What hacks me off is that no one even thought that through and then I get it in the neck!
Anyway, it is late and I'd best go to bed I suppose. I can have a real moan tomorrow if one or either of them gets back.
Friday, September 05, 2008
Off to University
A has just left with her Mum. I'm a little bit envious. I doubt she sees it the same way I do. I never got the chance to go to University and so that is why I am envious.
I could have gone, I was good enough to go and do History - I remember it well, it just wasn't what you did and I very much doubt my parents could have paid for the privilege either. Our school really wasn't set up like that. If I had gone where I was meant to go to school then things may have been different. I am of course making up for that now by studying for History now and I start next month myself.
However, the way my office looks at the moment after we have rifled it for stuff to go to University with A I need a weekend to clean it all up to get ready.
It is strange but I'm really pleased for A, I don't feel that she has moved out and that's it or any great upheaval like some parents do and all this outpouring of emotion and tears etc - what is all that about? The last thing we need is for any upset to be happening it is probably stressful enough for this next few weeks - to her it is the unknown and she is the one being brave and getting on with it, the last things she needs is for her supportive parents to be blabbing at her departure.
She has the next 3 (or 4 if Gap year) to have a great time, make friends for life, set up her career and become independent. What an opportunity? Good for her.
I could have gone, I was good enough to go and do History - I remember it well, it just wasn't what you did and I very much doubt my parents could have paid for the privilege either. Our school really wasn't set up like that. If I had gone where I was meant to go to school then things may have been different. I am of course making up for that now by studying for History now and I start next month myself.
However, the way my office looks at the moment after we have rifled it for stuff to go to University with A I need a weekend to clean it all up to get ready.
It is strange but I'm really pleased for A, I don't feel that she has moved out and that's it or any great upheaval like some parents do and all this outpouring of emotion and tears etc - what is all that about? The last thing we need is for any upset to be happening it is probably stressful enough for this next few weeks - to her it is the unknown and she is the one being brave and getting on with it, the last things she needs is for her supportive parents to be blabbing at her departure.
She has the next 3 (or 4 if Gap year) to have a great time, make friends for life, set up her career and become independent. What an opportunity? Good for her.
What a heavy day yesterday was
Full on day and I managed to get a mass of things done. I'm on a working party for a new campaign. That isn't easy work as it combines 4 disparate organisations and tries to give out a common message about them. Much gnashing of teeth and wailing :-) However, massive progress yesterday. I don't agree with most of the outcome it is shows little ambition but hey ho!
The rest of the day was given over to the forum next week. My speech and presentation is a key one and needs some serious work - I am at home today to do justice to that. I need to produce a book about it as well which is almost finished. Additionally the delegates packs needed thinking through and getting started, I again got that moving. I need to produce about 10 documents by Monday morning but this suits me. A is off to University today and I wanted to be home to make sure that I at least waved her off. I can't go with her as the car is so full of stuff there is only room for two including the driver so C will go with A down to her new flat and work out what is needed as there are bound to be things they need.
Last night I got to the station and they cancelled my train so I went and worked at my club up the road. That was useful as I got a lot more thinking work done. The downside was I did another 3 hours work more than I normally do and so I was absolutely knackered when I got home. I reckon if I hadn't been working from home today that I would have to have gone in late or taken the day off anyway.
Anyway, plenty to do, must dash.
The rest of the day was given over to the forum next week. My speech and presentation is a key one and needs some serious work - I am at home today to do justice to that. I need to produce a book about it as well which is almost finished. Additionally the delegates packs needed thinking through and getting started, I again got that moving. I need to produce about 10 documents by Monday morning but this suits me. A is off to University today and I wanted to be home to make sure that I at least waved her off. I can't go with her as the car is so full of stuff there is only room for two including the driver so C will go with A down to her new flat and work out what is needed as there are bound to be things they need.
Last night I got to the station and they cancelled my train so I went and worked at my club up the road. That was useful as I got a lot more thinking work done. The downside was I did another 3 hours work more than I normally do and so I was absolutely knackered when I got home. I reckon if I hadn't been working from home today that I would have to have gone in late or taken the day off anyway.
Anyway, plenty to do, must dash.
Wednesday, September 03, 2008
Jazz
How do they know just when to join in and make a great sound? Well I should know a bit about this being a musician - you just feel it and join in and jam along.
It was a lovely evening and I did enjoy myself and that is the point isn't it? Just get over the hump that says "don't" and just get past that and go and do "stuff". It is liberating, I just wished that I let go a bit more really. We "Brits" can be a bit reserved and we don't really let our hair down. Perhaps we should, we are good company and I managed to get at least 10 laughs this evening on the table.
Unfortunately the part of "annoying talking animal is already taken" - don't you just love Shrek and (of course) we get a slightly different version in the UK - we have Jonathan Ross as the Ugly Sister/Barkeep! (Like Jay Leno but without the chin or humour!).
Anyway - so nice to get out and let rip a little - I was in danger of disappearing up my own backside :-)
It was a lovely evening and I did enjoy myself and that is the point isn't it? Just get over the hump that says "don't" and just get past that and go and do "stuff". It is liberating, I just wished that I let go a bit more really. We "Brits" can be a bit reserved and we don't really let our hair down. Perhaps we should, we are good company and I managed to get at least 10 laughs this evening on the table.
Unfortunately the part of "annoying talking animal is already taken" - don't you just love Shrek and (of course) we get a slightly different version in the UK - we have Jonathan Ross as the Ugly Sister/Barkeep! (Like Jay Leno but without the chin or humour!).
Anyway - so nice to get out and let rip a little - I was in danger of disappearing up my own backside :-)
Blat
Kerpowww, wallopp! Thwack.
Yep - great words - just how I felt today, I had forgotten the hoarse voice and the brain scramble you get with this treatment. Boy did I do some work today. I got a the document finished, a whole load of stuff for the presentation next week done, two letters and another two documents fixed plus a few other things including getting my brochure approved for printing.
I am knackered but I am not resting I am off out tonight to the Jazz Club - great I could do with an evening out.
Yep - great words - just how I felt today, I had forgotten the hoarse voice and the brain scramble you get with this treatment. Boy did I do some work today. I got a the document finished, a whole load of stuff for the presentation next week done, two letters and another two documents fixed plus a few other things including getting my brochure approved for printing.
I am knackered but I am not resting I am off out tonight to the Jazz Club - great I could do with an evening out.
Ready to go to work
And there are still 10 minutes before I have to leave. Terrible night's sleep I slept fitfully and my legs were playing merry hell with a sort of mild cramping in each - enough to merit attention but not enough to turn into cramp. They still ache this morning.
I feel awake enough - I guess I will get tired quickly once I get to work and actually catch up and then do something.
The crazy, strange and beguiling world of BCG immunotherapy - welcome to my world :-)
I feel awake enough - I guess I will get tired quickly once I get to work and actually catch up and then do something.
The crazy, strange and beguiling world of BCG immunotherapy - welcome to my world :-)
Tuesday, September 02, 2008
The Trouble with Sleeping in
Is that at 11 pm I am wide awake and I need to be up at 5:30 am....
This is the tough bit - I made sure that I got a lot of rest as when I haven't in the past, it has wiped me out. The problem now is that come Thursday I will be utterly knackered and perhaps I'll ask to work at home on Friday - that would help things along nicely as we only do 6 hours on Friday and I could do more here as I wouldn't need to travel.
Right - off to bed and see if I can actually get some sleep?
This is the tough bit - I made sure that I got a lot of rest as when I haven't in the past, it has wiped me out. The problem now is that come Thursday I will be utterly knackered and perhaps I'll ask to work at home on Friday - that would help things along nicely as we only do 6 hours on Friday and I could do more here as I wouldn't need to travel.
Right - off to bed and see if I can actually get some sleep?
Treatment 1 of 3
Was - as usual - a little bit sore to start with but once done it was OK. I was in and out in no time which was a relief, nothing quite like waiting for 20 minutes to have a pipe shoved up you :-)
The usual turning, pills and going in and out of the toilet with bio hazard precautions followed.
It sure did sting a couple of times and I've thrown out some large lumps of bladder lining this morning but I feel OK. I feel sore around my middle - not surprisingly and a little befuddled which is pretty normal. I am trying to sort out my office and just don't really feel up to it and I remind myself that I really should be sitting down or having bed rest. I will do that soon I think as it is stupid to come up here and overdo things, I've done that before and it just sets you back.
Other than that - not a lot to report - strange and bizarre dreams no sign of the tormentors anymore thank goodness.
I'm glad I am alright and I am pleased that there are only two more to go - I know that they will be a little worse than this one but it still goes back to no pain, no gain and positive attitude that these things, unpleasant as they are do work and the results have been wonderful so far.
The usual turning, pills and going in and out of the toilet with bio hazard precautions followed.
It sure did sting a couple of times and I've thrown out some large lumps of bladder lining this morning but I feel OK. I feel sore around my middle - not surprisingly and a little befuddled which is pretty normal. I am trying to sort out my office and just don't really feel up to it and I remind myself that I really should be sitting down or having bed rest. I will do that soon I think as it is stupid to come up here and overdo things, I've done that before and it just sets you back.
Other than that - not a lot to report - strange and bizarre dreams no sign of the tormentors anymore thank goodness.
I'm glad I am alright and I am pleased that there are only two more to go - I know that they will be a little worse than this one but it still goes back to no pain, no gain and positive attitude that these things, unpleasant as they are do work and the results have been wonderful so far.
Monday, September 01, 2008
Here we go again
Let it be the last time. There could only be so many Rocky Movies so please let this be the last lot of three BCG treatments that I need.
The traditional ritual or perhaps habit now kicks in. I have had my lunch at 11:30 and my last drink before midday. My treatment is at 2 pm. If I get there a little early perhaps I will get done a little earlier too. I now need to get my drugs together, something to read and perhaps something to listen to. Additionally I will get my notepad to keep a record of things as they happen and my bleach and stuff to go into the toilet.
I've signed off from work with an auto response message and I only now need to concentrate on getting everything in place.
I remember last time it being worse than I remember and strangely the brain has a wonderful way of not remembering that.
This time I have been less "nervous" although I can feel slight apprehension at the moment it isn't anywhere near what it was prior to the first times.
Anyway, I sure hope that this lot does its stuff and that come December we can turn a page, start a new chapter and move on.
I thought about my cousin the other day who is having chemotherapy and remembered what a personal thing it is having treatment. No matter what you say to people you cannot express what it is like. You have to go through it yourself to fully understand it and words are not enough. Many people say that they don't know how I could let people do what they do to me - and I certainly was in that camp myself but when the end justifies the means you can accept just about anything. The call it life because they don't call it practice or rehearsal. Once you get that into your head and that maybe life is a little more interesting than the alternatives the choices are do it and live or don't and die :-)
Profound stuff for a Monday :-) Anyway, here we go and my Open University Foundation Course stuff has just arrived - excellent.
The traditional ritual or perhaps habit now kicks in. I have had my lunch at 11:30 and my last drink before midday. My treatment is at 2 pm. If I get there a little early perhaps I will get done a little earlier too. I now need to get my drugs together, something to read and perhaps something to listen to. Additionally I will get my notepad to keep a record of things as they happen and my bleach and stuff to go into the toilet.
I've signed off from work with an auto response message and I only now need to concentrate on getting everything in place.
I remember last time it being worse than I remember and strangely the brain has a wonderful way of not remembering that.
This time I have been less "nervous" although I can feel slight apprehension at the moment it isn't anywhere near what it was prior to the first times.
Anyway, I sure hope that this lot does its stuff and that come December we can turn a page, start a new chapter and move on.
I thought about my cousin the other day who is having chemotherapy and remembered what a personal thing it is having treatment. No matter what you say to people you cannot express what it is like. You have to go through it yourself to fully understand it and words are not enough. Many people say that they don't know how I could let people do what they do to me - and I certainly was in that camp myself but when the end justifies the means you can accept just about anything. The call it life because they don't call it practice or rehearsal. Once you get that into your head and that maybe life is a little more interesting than the alternatives the choices are do it and live or don't and die :-)
Profound stuff for a Monday :-) Anyway, here we go and my Open University Foundation Course stuff has just arrived - excellent.
Sunday, August 31, 2008
24 Hours
To go to treatment and I'm not thinking too much about it apart from noting it down here. I am wondering whether to work with the very real possibility that these three could be the last and that way I can work my mind into "only three more to go" and so on down to "last one!"
Of course, that isn't to say that this is the lot and I won't need anymore of course. Considering how vigorous this was initially and how they couldn't believe the biopsies and the way they had managed to tackle this, I suppose I ought to be prepared for it to come back? As I said before it can do that but the longer you go without a recurrence, the more likely it is it will have gone altogether. The other good thing is that it is relatively slow growing and can be caught (although I am guessing not in all cases).
Already I am feeling much better about the future and I am beginning to pull out and away from my normal demeanour perhaps back to somewhere and something like I was 5 or more years ago. I strongly believe that I have been "ill" for some time before I actually got ill. On reflection I was getting lethargic and lost interest in lots of things and didn't really want to get involved in anything.
It is a strange thing to say but the changes happening to me at the moment are quite surprising. I know I am getting better. I can feel my attitude and outlook on life and general confidence and self esteem are rising. It is about time - I'm getting slightly less cautious about things concerning my life and my future. There are less reasons not to do something - so less objections to suggested evenings out, going visiting and socials which I have tended to avoid (even if I do enjoy things once I am there).
My only challenge at the moment is to get beyond the fitness, fatigue and exhaustion stage which is probably the most annoying thing as it just happens often without any warning and it can just wipe you out. I think the one thing I do need to do is not take on so much at a time and to pace it properly. Trying to continue on like I used to and doing too much just isn't going to help.
Of course, that isn't to say that this is the lot and I won't need anymore of course. Considering how vigorous this was initially and how they couldn't believe the biopsies and the way they had managed to tackle this, I suppose I ought to be prepared for it to come back? As I said before it can do that but the longer you go without a recurrence, the more likely it is it will have gone altogether. The other good thing is that it is relatively slow growing and can be caught (although I am guessing not in all cases).
Already I am feeling much better about the future and I am beginning to pull out and away from my normal demeanour perhaps back to somewhere and something like I was 5 or more years ago. I strongly believe that I have been "ill" for some time before I actually got ill. On reflection I was getting lethargic and lost interest in lots of things and didn't really want to get involved in anything.
It is a strange thing to say but the changes happening to me at the moment are quite surprising. I know I am getting better. I can feel my attitude and outlook on life and general confidence and self esteem are rising. It is about time - I'm getting slightly less cautious about things concerning my life and my future. There are less reasons not to do something - so less objections to suggested evenings out, going visiting and socials which I have tended to avoid (even if I do enjoy things once I am there).
My only challenge at the moment is to get beyond the fitness, fatigue and exhaustion stage which is probably the most annoying thing as it just happens often without any warning and it can just wipe you out. I think the one thing I do need to do is not take on so much at a time and to pace it properly. Trying to continue on like I used to and doing too much just isn't going to help.
Saturday, August 30, 2008
Mountain of stuff to do
I have sat down at my desk and looked at a complete mountain load of things I need to get done. It is a bit daunting when you see quite how much there is but I just need to work my way through it all. That isn't easy when I keep getting trivial interruptions and also that the remainder of the household seem to be using my office a lot today!
I just hope I can get through all of this stuff in the next few days as my desk and my large work table / drawing board are disappearing under all sorts of paper, boxes and CDs, DVDs etc.
It is amazing quite how it gets like this. My desk at work is ordered tidiness but here it looks as if a small bomb has been thrown in to the room.
I'm surprised at how Monday's treatment hasn't been playing on my mind and it was only really in the last few days I began to think about it. Whilst I am not looking forward to this - I can, I think, take the view that these may the last ones of these I have to do. I might well need a yearly flexible cystoscopy but that is probably going to something I can deal with slightly differently to these and I understand that they are done locally too which is a great weight off my mind as having to get to the first Hospital we went to which has very little parking and is a fair drive away, at least this one is so near that I'll be able to get home quickly and suffer in silence rather than squirm inside a car or taxi for 30 or more minutes!
Anyway, three more to go and perhaps this episode can be placed into the experience drawer and life can get back to whatever next it will throw at me.
I just hope I can get through all of this stuff in the next few days as my desk and my large work table / drawing board are disappearing under all sorts of paper, boxes and CDs, DVDs etc.
It is amazing quite how it gets like this. My desk at work is ordered tidiness but here it looks as if a small bomb has been thrown in to the room.
I'm surprised at how Monday's treatment hasn't been playing on my mind and it was only really in the last few days I began to think about it. Whilst I am not looking forward to this - I can, I think, take the view that these may the last ones of these I have to do. I might well need a yearly flexible cystoscopy but that is probably going to something I can deal with slightly differently to these and I understand that they are done locally too which is a great weight off my mind as having to get to the first Hospital we went to which has very little parking and is a fair drive away, at least this one is so near that I'll be able to get home quickly and suffer in silence rather than squirm inside a car or taxi for 30 or more minutes!
Anyway, three more to go and perhaps this episode can be placed into the experience drawer and life can get back to whatever next it will throw at me.
Friday, August 29, 2008
Weekend, Rest, Treatment
My - hasn't the gap between treatments flown by? It hardly seems 9 weeks ago I finished off the last lot.
I feel tired but happy today - work has been hard and hectic this week but they like the work I do and how much I do. The next few weeks will be trying for us as I try and squeeze 5 days work into effectively 3 and a half days!
Lots of things going on as well that I must turn my attention to. A is off to Uni and her flat becomes available on Monday. She won't move in until later as I will be having my treatment on Monday and there isn't really a great rush for that.
I am trying to see what my schedule is like for the rest of the year and I am trying to sort out days and dates when we are all together. I've probably got to accept that it will not be that often.
On another note - the people I used to work for (oh no I didn't that's right :-) ) have been in touch with the people that I introduced them to (or didn't as they will have me believe) and it looks as if they have been somewhat shafted and are having to do something else which is fantastic and wonderful but they can't say what it is yet :-)
Maybe, just maybe they'll have got the message for it was a year ago now that we all went up to Scotland to get trained after it having been launched in June 2007 and here we are almost in September 2008 and they have - well nothing. Tragic isn't it?
What on earth were they thinking? Oh well, I suppose I ought to thank them for allowing me to break with the old world and join the Third Sector. What a difference.
I feel tired but happy today - work has been hard and hectic this week but they like the work I do and how much I do. The next few weeks will be trying for us as I try and squeeze 5 days work into effectively 3 and a half days!
Lots of things going on as well that I must turn my attention to. A is off to Uni and her flat becomes available on Monday. She won't move in until later as I will be having my treatment on Monday and there isn't really a great rush for that.
I am trying to see what my schedule is like for the rest of the year and I am trying to sort out days and dates when we are all together. I've probably got to accept that it will not be that often.
On another note - the people I used to work for (oh no I didn't that's right :-) ) have been in touch with the people that I introduced them to (or didn't as they will have me believe) and it looks as if they have been somewhat shafted and are having to do something else which is fantastic and wonderful but they can't say what it is yet :-)
Maybe, just maybe they'll have got the message for it was a year ago now that we all went up to Scotland to get trained after it having been launched in June 2007 and here we are almost in September 2008 and they have - well nothing. Tragic isn't it?
What on earth were they thinking? Oh well, I suppose I ought to thank them for allowing me to break with the old world and join the Third Sector. What a difference.
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