I think I said earlier you can get some wild mood swings. Logged on to work - a right arse hole message in my inbox. Something I have been saying since I joined, turned around and played back to me as if it were their idea. Coupled that with a conversation I had with them last week and that is in there as well played back to me.
So - do I yell at said s**t for brains or just reproduce the 20 odd memos and say why are you asking me when I've been asking you the same question all the time? Luckily I have gone into calm down mode after explosive mode. The trouble is this would normally not get me this angry I'd be able to treat it with the utter contempt it deserves and move on. These days, I just get really pissed off with people wasting theirs and my time and frankly being stupid.
On the flip side of this mood swings stuff I also need to avoid anything that is sad especially kids in hospitals with horrible diseases etc. Also stupid things on TV can just catch me unawares too. I hope they don't show Bambi over Christmas - I'll be wasted :-)
I also hope when I get back to work not to be too aggressive towards them. Generally when someone comes out with a stupid remark I might look at them a strange way or ask them to repeat themselves until they realise but judging by the anger I've just felt with this, I've got a feeling I may just tell them straight out which way "up" is :-) I could have well lost all my carefully honed people skills. Out of my way Ricky Gervais, let me show you how I run my office :-)
Tuesday, December 12, 2006
That's Over!!
Perhaps I should be screaming that from the roof tops? Not in my PJs and Dressing Gown - better not :-)
Wow, that is it, all over for now. No disturbed Monday and Tuesdays. I'm looking forward to the end of this week too as it means I can finish work, sort out my office and all those little things I need to get done and then have a relaxing Christmas and New Year.
Wow, that is it, all over for now. No disturbed Monday and Tuesdays. I'm looking forward to the end of this week too as it means I can finish work, sort out my office and all those little things I need to get done and then have a relaxing Christmas and New Year.
9 Weeks
That is what I was told yesterday. Expect the letter to come in in 9 weeks and to be in in 12 weeks to see how the treatment has worked.
Long time to wait isn't it? Mind you, I doubt I'd feel particularly up for going in at the moment after 6 weeks of this.
Long time to wait isn't it? Mind you, I doubt I'd feel particularly up for going in at the moment after 6 weeks of this.
Not the best of nights
That was a pretty bad night. The symptoms were more manageable than before - you get used to them and you manage them but this morning I'm a little bit sore and I only got about 3 hours sleep. I managed a couple of hours into the evening so that may account for it.
I can't say that I should be feeling any worse than normal (whatever normal is) there is no reason I can see. It is quite peculiar I feel quite out of it this morning. I'll let today run its course and see how I get on.
I can't say that I should be feeling any worse than normal (whatever normal is) there is no reason I can see. It is quite peculiar I feel quite out of it this morning. I'll let today run its course and see how I get on.
Monday, December 11, 2006
Tell everyone or keep it to yourself?
My guardian angel - before I was diagnosed told me to tell everyone that I was ill and to share it around as much as possible (or words to that effect). I think that, for me, that has worked and this blog has been great. The blog is good because other people can look too and perhaps get some crumb of comfort from the fact that it isn't "just them".
I'd probably be the sort of person who would share all of this stuff anyway although I hadn't really thought about blogging it, sending out e-mails on my condition would be normal.
I think it would be very bad for me to have just locked myself in and become quiet and non communicative about it. I can't see that it helps a lot as the only opinion you can seek is your own and frankly I still don't trust, even my analytical and intuitive, bits of my brain to come up with all the right or even sensible answers. The phrase "you need to get out more" applies in spades :-)
The only downside I've noticed is the look of concern on some people's faces when they meet you and perhaps I'm not communicating enough about the good things or perhaps I'm not continually reinforcing the message about how well I feel etc.
To answer my own question - do what my guardian angel said and tell as many people as you can and it will make you feel a lot better than bottling it up and keeping it to yourself and your overactive imagination.
I'd probably be the sort of person who would share all of this stuff anyway although I hadn't really thought about blogging it, sending out e-mails on my condition would be normal.
I think it would be very bad for me to have just locked myself in and become quiet and non communicative about it. I can't see that it helps a lot as the only opinion you can seek is your own and frankly I still don't trust, even my analytical and intuitive, bits of my brain to come up with all the right or even sensible answers. The phrase "you need to get out more" applies in spades :-)
The only downside I've noticed is the look of concern on some people's faces when they meet you and perhaps I'm not communicating enough about the good things or perhaps I'm not continually reinforcing the message about how well I feel etc.
To answer my own question - do what my guardian angel said and tell as many people as you can and it will make you feel a lot better than bottling it up and keeping it to yourself and your overactive imagination.
Thoughts on the BCG Treatment
I found the whole set of treatments manageable. The first treatment is a bit of a non event apart from the waiting and the worry about the catheter which really isn't that bad. I'd rather do this than have a blood test and I'd rather have a blood test than a cannula shoved in me so it isn't that bad and I am squeamish.
The lack of side effects at week one was an issue as the side effects at week two were unbelievable, like getting hit by a truck as I tell anyone who cares to listen. The books and even the nurse doesn't really tell you it is like that. My Consultant did. I was told not to drive or fly or attempt anything too ambitious and yet I feel that whilst that applied to the second week, ever since I have been well enough to travel albeit I wouldn't want to go more than say 30 minutes at most from home just in case I needed to find a toilet. Towards the end of each week you get progressively better at this. I have my treatments on Monday that wipes out most of Monday and generally Tuesday morning as well although I have been up and about since the third treatment on a Tuesday I still have minor side effects for the remainder of that day which of course gradually get less and less.
By weeks four and five I was getting into the swing of things and you get into a routine. Shower an hour before, set up the bedroom and bathroom for the coming turning and side effects etc. These little rituals also help to bring about a bit of calm. To start with my whole Monday was wiped out, all I could do on the PC was to play games and let those eat away the time. Now I can do work and add to this blog and do other things because I don't have to worry so much about it. It is still a little concerning of course but it is manageable and soon will be the last one and I can forget about them.
I hope it has worked - I really do. Someone posted (elsewhere) that the level of side effects does not affect how the BCG has worked. Feeling and seeing what it did do - it has done something - it is just the hope that it has done what the Consultant has set out to achieve. If we can get this manageable and able to maintain it I will have got the very best I could have hoped for.
The lack of side effects at week one was an issue as the side effects at week two were unbelievable, like getting hit by a truck as I tell anyone who cares to listen. The books and even the nurse doesn't really tell you it is like that. My Consultant did. I was told not to drive or fly or attempt anything too ambitious and yet I feel that whilst that applied to the second week, ever since I have been well enough to travel albeit I wouldn't want to go more than say 30 minutes at most from home just in case I needed to find a toilet. Towards the end of each week you get progressively better at this. I have my treatments on Monday that wipes out most of Monday and generally Tuesday morning as well although I have been up and about since the third treatment on a Tuesday I still have minor side effects for the remainder of that day which of course gradually get less and less.
By weeks four and five I was getting into the swing of things and you get into a routine. Shower an hour before, set up the bedroom and bathroom for the coming turning and side effects etc. These little rituals also help to bring about a bit of calm. To start with my whole Monday was wiped out, all I could do on the PC was to play games and let those eat away the time. Now I can do work and add to this blog and do other things because I don't have to worry so much about it. It is still a little concerning of course but it is manageable and soon will be the last one and I can forget about them.
I hope it has worked - I really do. Someone posted (elsewhere) that the level of side effects does not affect how the BCG has worked. Feeling and seeing what it did do - it has done something - it is just the hope that it has done what the Consultant has set out to achieve. If we can get this manageable and able to maintain it I will have got the very best I could have hoped for.
Now to learn to live with this going forward
So the Treatment is over and my bladder has been scraped, bruised, battered (not like the fish batter), and finally has been in contact with live BCG. And that is after it had Cancer. I'm beginning to feel very sorry for this poor little thing :-)
Anyway, from this point onwards, I now have to work with living with it - Cancer that is. Whatever the outcome of the treatment and that won't be know for 3 + months there are some things that most (if not all) cancers have in common and that is that they can come back. It is quite frequent in bladder cancer to find that a tumour will come back and that it will have to be scraped away again. It also means that I'll be in and out of Hospital a lot for the foreseeable future as they need to check up regularly and I may also end up on a regular maintenance of BCG (if I am lucky) so my next steps are to settle down and get back to "normal" and to live with these things. I'm guessing that everyone will have to do this and the Cancer Research site gives some good pointers about this on their site.
You go through just about all possible emotions and personality types. Some will cope with them differently and it will take different times to do so. It will be interesting now that I will get some more time to reflect on this what I am going to make of it.
A friend of mine told me this was going to be like a Roller Coaster Ride. Once you were strapped in there was NO WAY you could get off the Roller Coaster, you had to go where it took you and there were going to be bits you liked and bits you hated, sudden changes in direction, loop the loops, dark places, water splashes (I put that in here I can't think what that would allude to!) and so on. You could only get off the Roller Coaster when it had stopped and it was safe to do so.
It feels like I have just completed one circuit and the carriages have pulled into the station. I want to get out but I've been told to stay on board. I have to wait and it takes time to fill all the carriages but I know that soon I'll be on my way again. I should be a lot better this time - I know what to expect (or I think I do). I'm more knowledgeable about what is going on and I can learn to tackle the bends and loops easier. I can even begin to enjoy some bits of the ride and occasionally we could get switched to a quieter length of track altogether. I'm on the quiet stretch now, there are no high speed bends, no loop the loops and the dark places are few and far between. I can see the scenery now, everything looks fine and nothing is blurred. I have to stay on the quiet track for another 3 months and then I'll find out which track they want me on next.
I think I'd be very disappointed if this treatment didn't work this time. I need to build myself towards getting that news in a way that keeps me positively focused on sorting this out yet realistic enough to realise that I shouldn't expect this to go away. It will be interesting to see how I can do that in the coming months.
Anyway, from this point onwards, I now have to work with living with it - Cancer that is. Whatever the outcome of the treatment and that won't be know for 3 + months there are some things that most (if not all) cancers have in common and that is that they can come back. It is quite frequent in bladder cancer to find that a tumour will come back and that it will have to be scraped away again. It also means that I'll be in and out of Hospital a lot for the foreseeable future as they need to check up regularly and I may also end up on a regular maintenance of BCG (if I am lucky) so my next steps are to settle down and get back to "normal" and to live with these things. I'm guessing that everyone will have to do this and the Cancer Research site gives some good pointers about this on their site.
You go through just about all possible emotions and personality types. Some will cope with them differently and it will take different times to do so. It will be interesting now that I will get some more time to reflect on this what I am going to make of it.
A friend of mine told me this was going to be like a Roller Coaster Ride. Once you were strapped in there was NO WAY you could get off the Roller Coaster, you had to go where it took you and there were going to be bits you liked and bits you hated, sudden changes in direction, loop the loops, dark places, water splashes (I put that in here I can't think what that would allude to!) and so on. You could only get off the Roller Coaster when it had stopped and it was safe to do so.
It feels like I have just completed one circuit and the carriages have pulled into the station. I want to get out but I've been told to stay on board. I have to wait and it takes time to fill all the carriages but I know that soon I'll be on my way again. I should be a lot better this time - I know what to expect (or I think I do). I'm more knowledgeable about what is going on and I can learn to tackle the bends and loops easier. I can even begin to enjoy some bits of the ride and occasionally we could get switched to a quieter length of track altogether. I'm on the quiet stretch now, there are no high speed bends, no loop the loops and the dark places are few and far between. I can see the scenery now, everything looks fine and nothing is blurred. I have to stay on the quiet track for another 3 months and then I'll find out which track they want me on next.
I think I'd be very disappointed if this treatment didn't work this time. I need to build myself towards getting that news in a way that keeps me positively focused on sorting this out yet realistic enough to realise that I shouldn't expect this to go away. It will be interesting to see how I can do that in the coming months.
6th and Last Treatment
Of this session that is. It is the morning before the last treatment. I slept well but I had a good day yesterday which probably helped.
Once today is out of the way then I have three months, a quarter of a year, to wait to go into Hospital and have the biopsy operation and I suppose two or three weeks after that to hear the results. It seems an awfully long time but perhaps I can use it to normalise my life, it having been far from normal for the last 5 months. Perhaps I'll be able to do some reflecting on things as opposed to just having it happen to me, who knows?
Yesterday was good. Many people worried about me but also very pleased to see how well I looked. We had a great Christmas Lunch and as usual a table of great people with whom we had a lot of laughs. On arrival home, the girls and I lit the fire and sat down and watched Oliver and MIB II so a good day topped off well too.
Once today is out of the way then I have three months, a quarter of a year, to wait to go into Hospital and have the biopsy operation and I suppose two or three weeks after that to hear the results. It seems an awfully long time but perhaps I can use it to normalise my life, it having been far from normal for the last 5 months. Perhaps I'll be able to do some reflecting on things as opposed to just having it happen to me, who knows?
Yesterday was good. Many people worried about me but also very pleased to see how well I looked. We had a great Christmas Lunch and as usual a table of great people with whom we had a lot of laughs. On arrival home, the girls and I lit the fire and sat down and watched Oliver and MIB II so a good day topped off well too.
Sunday, December 10, 2006
The Trouble With Finding Out More....
Is that you get to read things that you would rather not have done. You get to see people far worse off than you are which cruelly gives you a lift but it is the long term statistics that get you. I am a complete newbie at this - 5 months since my first symptoms. Some people have had this 20 years or more and it is quite common for them to have recurrence of tumours; have a few years clear and then have to go back in again.
It could be that those who don't have this problem, those that have no recurrence just never write into to these online forums (I suppose they don't have a need to). I was also somewhat horrified to find out that CIS (Carcinoma in Situ) which is looked at in other Cancers as quite treatable is in bladder cancer quite treatable but also considered a very aggressive form. If you look at Insurance cover it states that you cannot get a pay out on CIS. So I suppose you also get conflicting information you need to sift out.
The mortality rate for CIS is good and dependant on what you read the treatment I am on now is good in 50 to 80% of cases. I guess the worst bit now is going to be waiting for 3 months to see if it worked.
So what else is wrong with finding out more about your own disease? It makes you a real bore :-) I am out today at a Christmas meal with about 100 or more people, I hope that I don't become a bore doing my "Yes I am feeling well but I won't know until next year", "No I will probably not be cured but they can control this for life for me". Perhaps I'll just go and prop the bar up for a few hours instead!!
It could be that those who don't have this problem, those that have no recurrence just never write into to these online forums (I suppose they don't have a need to). I was also somewhat horrified to find out that CIS (Carcinoma in Situ) which is looked at in other Cancers as quite treatable is in bladder cancer quite treatable but also considered a very aggressive form. If you look at Insurance cover it states that you cannot get a pay out on CIS. So I suppose you also get conflicting information you need to sift out.
The mortality rate for CIS is good and dependant on what you read the treatment I am on now is good in 50 to 80% of cases. I guess the worst bit now is going to be waiting for 3 months to see if it worked.
So what else is wrong with finding out more about your own disease? It makes you a real bore :-) I am out today at a Christmas meal with about 100 or more people, I hope that I don't become a bore doing my "Yes I am feeling well but I won't know until next year", "No I will probably not be cured but they can control this for life for me". Perhaps I'll just go and prop the bar up for a few hours instead!!
More Information
A trawl through the Internet brings many sites of interest and a few you'd really wish you had not seen.
Here are a few worth looking at to find out what this is all about.
Click Here for the Cancer Backup Site
Click Here for the Cancer research Site - you can find out just about anything on this site
Click Here for the Bladder Cancer Web Cafe
Click Here for some more on a fact sheet
There are more like this but the basics are available to run through.
Here are a few worth looking at to find out what this is all about.
Click Here for the Cancer Backup Site
Click Here for the Cancer research Site - you can find out just about anything on this site
Click Here for the Bladder Cancer Web Cafe
Click Here for some more on a fact sheet
There are more like this but the basics are available to run through.
Saturday, December 09, 2006
Almost Looking Forward to Monday
Strange but true. Last treatment (for the moment) and I'm almost wanting to get there and get it over and done with. I think I'll give a miss to the wag who reckons that I shouldn't take the pain killers and everything so that I can really feel that it is working. Mmm, thanks for that bit of advice but I choose to ignore it :-)
I'm feeling a lot better today, last week was a dark week for some reason. Anyway, just banged out close to 1000 e-cards this morning and now need to finish off the snail mail ones and that will be me done this Christmas. All cards done, all presents done and wrapped up. Cool!
I'm feeling a lot better today, last week was a dark week for some reason. Anyway, just banged out close to 1000 e-cards this morning and now need to finish off the snail mail ones and that will be me done this Christmas. All cards done, all presents done and wrapped up. Cool!
Friday, December 08, 2006
End the week on an up beat note
I have a guardian angel who reads my blogs and picks up when I'm feeling a bit down in the mouth and drops me a little note to cheer me up which on a murky old Friday night has just happened.
I think I can put this week behind me now and move on - I've got things to do this weekend and next, I'm going out and meeting people and I'm going to have a good time come what may!
I'm really grateful for those little pick me ups I get.
I think I can put this week behind me now and move on - I've got things to do this weekend and next, I'm going out and meeting people and I'm going to have a good time come what may!
I'm really grateful for those little pick me ups I get.
Snake Oil
I was amazed how many "Snake Oil" sales people cash in on people's woes, despair and the downright terror you get with Cancer.
All sorts of stuff is being plied as a cure or some sort of help. Call me a cynic but I think my specialist would have told me if ground bat's droppings were the thing to be on? I suppose that it may just be me who finds it offensive to take advantage of anyone like this yet you can find this sort of stuff through a search on the Internet. I like the ones that are Scientifically proven and yet have some old Doris from Wisconsin telling you how it cured her as the single source of the miracle of the slightly dodgy stuff they bang out. Judging by the price of this stuff, it would be cheaper to buy a gold bar and swallow it - it would probably do you more good too!
Whinge over for the moment :-) Have a nice day now!
All sorts of stuff is being plied as a cure or some sort of help. Call me a cynic but I think my specialist would have told me if ground bat's droppings were the thing to be on? I suppose that it may just be me who finds it offensive to take advantage of anyone like this yet you can find this sort of stuff through a search on the Internet. I like the ones that are Scientifically proven and yet have some old Doris from Wisconsin telling you how it cured her as the single source of the miracle of the slightly dodgy stuff they bang out. Judging by the price of this stuff, it would be cheaper to buy a gold bar and swallow it - it would probably do you more good too!
Whinge over for the moment :-) Have a nice day now!
And another one
Who thought that it was hoped that my medical problems were behind me now. I suppose it is only natural for people to think that way and I read some things about other cancers these days and don't like what I read so I'd probably not understand someone else's condition, nor would I specifically go out and read about it unless they were perhaps closer to me.
So I suppose I shouldn't get angry about it. I find it quite difficult to wrap up in a few words exactly what my future holds for me anyway as that isn't exactly clear at the moment. It is quite an uncommon Cancer I suppose, I hadn't heard about it before I was diagnosed - heard about the big ones - Lung, Prostate, Throat and Breast etc., but Bladder - no never heard of it yet it is the 4th most common in men.
Anyway, just another of those things where I know that I'll be under long term observation (at best) and that I will not be fixed by Christmas this year or perhaps next year either or the year after that. I'm still coming to terms with that aspect of it and I've not got there yet so explaining it to someone who thinks this course of treatment is the end of things can be quite difficult.
So I suppose I shouldn't get angry about it. I find it quite difficult to wrap up in a few words exactly what my future holds for me anyway as that isn't exactly clear at the moment. It is quite an uncommon Cancer I suppose, I hadn't heard about it before I was diagnosed - heard about the big ones - Lung, Prostate, Throat and Breast etc., but Bladder - no never heard of it yet it is the 4th most common in men.
Anyway, just another of those things where I know that I'll be under long term observation (at best) and that I will not be fixed by Christmas this year or perhaps next year either or the year after that. I'm still coming to terms with that aspect of it and I've not got there yet so explaining it to someone who thinks this course of treatment is the end of things can be quite difficult.
Let that be a lesson
I was really tired yesterday. I am guessing that I am really not quite as fit as I feel and going out on Wednesday evening, walking to the venue and being out and not resting at home all contributed. Not that I feel ill or anything - I was just tired.
I will have to build up gradually if that is the case. I've planned a few outings after my last treatment next week. I shall make sure that I am fit enough to do them.
It all adds to this week's underlying theme of being quite angry. I'm angry about most things; work, insurance, fitness, perceptions, being stuck at home etc. I will work on getting that out of my system and "kind of" looking forward to the last treatment on Monday.
I will have to build up gradually if that is the case. I've planned a few outings after my last treatment next week. I shall make sure that I am fit enough to do them.
It all adds to this week's underlying theme of being quite angry. I'm angry about most things; work, insurance, fitness, perceptions, being stuck at home etc. I will work on getting that out of my system and "kind of" looking forward to the last treatment on Monday.
Thursday, December 07, 2006
Tired? I'm Knackered
Well my little excursion last night brought something home to me. I am really knackered this afternoon, I'm yawning and can't concentrate - I'm going to take myself off for a lie down.
And my other computer has just blue screened - oh great :-) I can see next to nothing getting done here this afternoon if this keeps up.
And my other computer has just blue screened - oh great :-) I can see next to nothing getting done here this afternoon if this keeps up.
Just cannot get going this morning
I cannot get going at all this morning. I've a piece of work to finish and I have sat and stared at it for 30 minutes and not done anything with it. I'm feeling quite tired too. Perhaps going out last night and the walking has just tired me out?
At the risk of repeating myself
I was asked if I was "better" last night. I suppose the answer is yes. I'm better than I was 5 months ago. On Christmas day it will be 5 months since the first operation. I'm better than I was when I had that done. I'm better in terms of all around health and I'm better in other ways too.
It is again one of those difficult questions to answer because you look and feel better but I have no idea if I AM better until April next year. Even then I'm expecting that this is a long term thing. So you have to caveat your answers with a yes and no type response. "Yes I'm better but no I'm not cured" or some such thing. As most people start off a conversation with "How are you?" it can be difficult answering that honestly. "I'm fine" doesn't cut it neither does "I'm getting there". Trying to explain that you are well but you are really (actually) ill and will remain so for a long time is quite difficult to phrase easily.
As I really haven't been in too many social events these past months it should be interesting to see how a number of people react to me on Sunday as I am going to a large Christmas Lunch. I'll see if I can come up with any easy to use responses to "how are you?"
It is again one of those difficult questions to answer because you look and feel better but I have no idea if I AM better until April next year. Even then I'm expecting that this is a long term thing. So you have to caveat your answers with a yes and no type response. "Yes I'm better but no I'm not cured" or some such thing. As most people start off a conversation with "How are you?" it can be difficult answering that honestly. "I'm fine" doesn't cut it neither does "I'm getting there". Trying to explain that you are well but you are really (actually) ill and will remain so for a long time is quite difficult to phrase easily.
As I really haven't been in too many social events these past months it should be interesting to see how a number of people react to me on Sunday as I am going to a large Christmas Lunch. I'll see if I can come up with any easy to use responses to "how are you?"
Wednesday, December 06, 2006
Life is unfair - I feel a fraud having read these
I think these are really special blogs and bits of news. I know that I'm ill and all that but take a look at these and go stare someone in the face about your troubles.
Sophie's Blog
Josie
Let us all remember our place and how lucky we really are.
Sophie's Blog
Josie
Let us all remember our place and how lucky we really are.
Oh you look well
I was just amusing myself over at the Bladder Cancer Cafe HERE there are some great stories and some very sad ones to. It is a good place to go to some of the time. I have to say that it can actually work the opposite way and make me quite depressed too.
However the humour section made me laugh and I thought I'd share some of the more trying moments with you.
I met up with someone who said "Wow you are looking great" to which I retorted "They didn't operate on my face!"
Too many people think that if you have Cancer you look frail, have no hair and are sick everywhere. Not true - the trouble is that even though you can't see it, it is pretty serious and it isn't one that goes away easily. Ho hum...
However the humour section made me laugh and I thought I'd share some of the more trying moments with you.
I met up with someone who said "Wow you are looking great" to which I retorted "They didn't operate on my face!"
Too many people think that if you have Cancer you look frail, have no hair and are sick everywhere. Not true - the trouble is that even though you can't see it, it is pretty serious and it isn't one that goes away easily. Ho hum...
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