This will be fun. The rest of the family have various colds and Flu like symptoms and I've got to get my treatment tomorrow and report any "Flu like" symptoms which could be serious side effects :-)
I'll have to have a chat with the Nurse tomorrow and see what that is all about.
Sunday, December 03, 2006
Downhill from now on
Yes,
2 more treatments to go - one tomorrow and then just one left after that. Something to look forward to leading up to Christmas.
You feel with this treatment that you just get back to feeling great again the day before the next one :-)
Life is like that don't you think? No doubt the specialists worked out that it takes roughly a week to recover and so this was the best frequency for treatment - clever aren't they!
2 more treatments to go - one tomorrow and then just one left after that. Something to look forward to leading up to Christmas.
You feel with this treatment that you just get back to feeling great again the day before the next one :-)
Life is like that don't you think? No doubt the specialists worked out that it takes roughly a week to recover and so this was the best frequency for treatment - clever aren't they!
Beginning to get back to "normal"
As I said yesterday, I am beginning to notice long periods of time where I don't think about or act as if I have the disease. I think that this is a good sign as I am coming to terms with it and I am beginning to manage it and not it managing me. A lot of people talk about having a "state of mind" about cancer. I'm sure there is something in there about that.
In this instance I think that you do get a very big shock to start with, you don't believe it for a while, you tackle it with denial (or however you tackle it), you then get to the point of acceptance. I think you get to acceptance and then you go through a stage of depressive acceptance and grow out of that. I think I have now got to that part which is I've got it, I've gone through the treatments and I'm recovering and feel almost fully recovered, I don't have anything on my near term radar like tests and operations to cope with, Christmas is coming, things like work are getting back to normal, my day to day is getting back to normal and very soon, I hope that I'll be going a day at a time without thinking too hard about what I have got.
I'm going to be making sure that I eat and drink the right things still but these are becoming habits now so that should also help me to think less about these things.
Well I am pleased about this, I was beginning to worry that all I'd ever think about was how I am, measuring everything I was doing in terms of what effect it would have on me etc.
In this instance I think that you do get a very big shock to start with, you don't believe it for a while, you tackle it with denial (or however you tackle it), you then get to the point of acceptance. I think you get to acceptance and then you go through a stage of depressive acceptance and grow out of that. I think I have now got to that part which is I've got it, I've gone through the treatments and I'm recovering and feel almost fully recovered, I don't have anything on my near term radar like tests and operations to cope with, Christmas is coming, things like work are getting back to normal, my day to day is getting back to normal and very soon, I hope that I'll be going a day at a time without thinking too hard about what I have got.
I'm going to be making sure that I eat and drink the right things still but these are becoming habits now so that should also help me to think less about these things.
Well I am pleased about this, I was beginning to worry that all I'd ever think about was how I am, measuring everything I was doing in terms of what effect it would have on me etc.
Saturday, December 02, 2006
Not so bad
I have just finished the majority of newsletters and Christmas Cards and notes to those who don't know. It wasn't as bad as I thought it would be apart from one - someone I should have told a long time ago and completely forgot to. Other than that - nowhere near as bad as I thought it was going to be at all.
Hope it stays that way.
Hope it stays that way.
Beginning to think less about it
I'm beginning to think less (all the time) about what I have now. I can go for many hours without my thoughts turning to the facts and that is beginning to help a lot. I can concentrate on things and it is only seeing the paperwork and other reminders that take attention away.
Today is going to be difficult not to think about it all day as I am doing my Christmas Cards and inserting newsletters or writing notes to people.
Today is going to be difficult not to think about it all day as I am doing my Christmas Cards and inserting newsletters or writing notes to people.
Friday, December 01, 2006
Silly Season
1st December - no one wants to work, no one wants to make meetings, meetings that have been planned get canned and moved to next year.
Here we go, it is Christmas and all the crazy behaviour that goes with it. For once - this year I'm going to take extended time off and I am actually going to spend time to myself. I've often taken time off but hardly ever have I done what I want to do. I have absolutely no idea what I AM going to do yet but I'll have fun thinking about it. Two more treatments and two more weeks left and I can relax up for a while. Nice!
Here we go, it is Christmas and all the crazy behaviour that goes with it. For once - this year I'm going to take extended time off and I am actually going to spend time to myself. I've often taken time off but hardly ever have I done what I want to do. I have absolutely no idea what I AM going to do yet but I'll have fun thinking about it. Two more treatments and two more weeks left and I can relax up for a while. Nice!
Friday - Time for a laugh
When I got my Outpatients Appointment letters they arrived in six envelopes over two days.
Now, you'd have thought that someone booking these knew they wanted a recurring appointment, on the same day each week for 6 weeks (albeit not all at the same time but near). How difficult would it have been to make 6 appointments and put them all on one letter? Everything would have been in one place, the cost of letters, envelopes, handling and postage alone would have (you would have thought) paid for the difficulty of doing that.
I reckon though that the computer system cannot do this and each appointment once made automatically generates a letter.
Now, you'd have thought that someone booking these knew they wanted a recurring appointment, on the same day each week for 6 weeks (albeit not all at the same time but near). How difficult would it have been to make 6 appointments and put them all on one letter? Everything would have been in one place, the cost of letters, envelopes, handling and postage alone would have (you would have thought) paid for the difficulty of doing that.
I reckon though that the computer system cannot do this and each appointment once made automatically generates a letter.
Perception of the treatment
I had a funny chat today. Someone thought that - the treatment I was having now would be the lot, you know, I'd be fixed and that was it. I'd probably say that my impression would be the same if I didn't know all about my disease and the treatments available.
I will have to do some educational work I suppose to explain what it is I'm having done and what it really means.
I was disappointed to read today that this disease gets a lot of recurrences. I don't like the idea of that at all. The operations are stressful things to cope with and to imagine having to have a number of these again in the future is worrying. I hope that the treatment will get me as near to OK as is possible.
It's not that I don't like you - it is just that I could be writing this blog for a number of years!
I will have to do some educational work I suppose to explain what it is I'm having done and what it really means.
I was disappointed to read today that this disease gets a lot of recurrences. I don't like the idea of that at all. The operations are stressful things to cope with and to imagine having to have a number of these again in the future is worrying. I hope that the treatment will get me as near to OK as is possible.
It's not that I don't like you - it is just that I could be writing this blog for a number of years!
Thursday, November 30, 2006
Itching to get back
I'm itching to get back to work in the New Year. By getting back to work I mean actually going to the Office and getting out of the house and going to customer sites. I have been working at home for quite a while now I really could do with a change of scenery.
What is your problem
I've mentioned it before but another example this morning of something that was obviously a major problem in the house and, when you boiled it down wasn't. It needed a yes or no answer, a bit of thought and reason applied and that would be it. The answer was either yes or no there was no middle ground. People were gong to get upset one way or the other.
I was watching this unfold and was almost at the point of wielding the size 12s but decided that is was best I kept out of the way. You see, it was that easy to see what was going on, it was a "no brainer" what to do about it and yet all hell had broken loose. Why even bother, make a decision and stick to it (right or wrong). After you have made the decision be big enough to accept the consequences. It really is that simple, that black and white. For something so trivial as someone deciding whether or not to go in when clearly not feeling well and the row that caused in the house this morning it was hardly worth it. At the end of the day, after going in and out of the house twice, the problem was resolved - too sick to go in.
I can be downright insensitive on stuff like this. It was so blindingly obvious that the best thing to do was to stay at home. Did I really need all the nonsense and arguments going on? It was like a mad house for 15 or 20 minutes. I like the bit when they try and get me involved - that often happens and they always don't like the answer anyway. It's like work - sometimes you want to walk into the office and just yell - life is too short for this shit, sort yourselves out or I'll do it for you.
Even now - they are not sure and may or may not want to go in - give me a break. They wonder why I get angry with this stuff. Simple, I really can't stand fannying around like this. Make a decision, stick to it and get on with it.
Now that's my whole morning screwed up. I hope no one phones up in the next half an hour with some sort of problem they may get more than they bargained for :-)
I was watching this unfold and was almost at the point of wielding the size 12s but decided that is was best I kept out of the way. You see, it was that easy to see what was going on, it was a "no brainer" what to do about it and yet all hell had broken loose. Why even bother, make a decision and stick to it (right or wrong). After you have made the decision be big enough to accept the consequences. It really is that simple, that black and white. For something so trivial as someone deciding whether or not to go in when clearly not feeling well and the row that caused in the house this morning it was hardly worth it. At the end of the day, after going in and out of the house twice, the problem was resolved - too sick to go in.
I can be downright insensitive on stuff like this. It was so blindingly obvious that the best thing to do was to stay at home. Did I really need all the nonsense and arguments going on? It was like a mad house for 15 or 20 minutes. I like the bit when they try and get me involved - that often happens and they always don't like the answer anyway. It's like work - sometimes you want to walk into the office and just yell - life is too short for this shit, sort yourselves out or I'll do it for you.
Even now - they are not sure and may or may not want to go in - give me a break. They wonder why I get angry with this stuff. Simple, I really can't stand fannying around like this. Make a decision, stick to it and get on with it.
Now that's my whole morning screwed up. I hope no one phones up in the next half an hour with some sort of problem they may get more than they bargained for :-)
Wednesday, November 29, 2006
Breaking the News
It is the time of year when, bad as I've been all year keeping in touch with folks - I do actually get around to sending off news. I've bitten the bullet and actually written two versions of the truth. One is for family and friends and the other one is for colleagues and acquaintances.
Both were difficult to write as breaking bad news is never really easy anyway. I'll see what the reaction is. I've mentioned the blog in one of the newsletters but not the other one yet.
Both were difficult to write as breaking bad news is never really easy anyway. I'll see what the reaction is. I've mentioned the blog in one of the newsletters but not the other one yet.
No Way - BBC says Bacon Butties give you Bladder Cancer!
Click HERE if you don't believe me.
Good grief - I'll never look at a Bacon Butty the same way again now......
Good grief - I'll never look at a Bacon Butty the same way again now......
A little bit of a heavy article but interesting on BCG
Click HERE
Donald L. Lamm, MD has a number of articles, both here and in the bladder cafe and on his own web site which talk about BCG and its part in fighting bladder cancer or more properly getting the body to do that for you.
Donald L. Lamm, MD has a number of articles, both here and in the bladder cafe and on his own web site which talk about BCG and its part in fighting bladder cancer or more properly getting the body to do that for you.
Superficial Cancer
Is what it is called. I don't see anything superficial about it at all. I think that the term may need adjusting over time as even in its Carcinoma In Situ form I believe it is pretty nasty.
Well Being Continues
Again, up with the Lark and feeling good and ready for action. When I work out what the magic ingedient is, I'll let you know.
For now, I shall just enjoy being this awake and back to my best.
For now, I shall just enjoy being this awake and back to my best.
Tuesday, November 28, 2006
BCG for Bladder Cancer
One of the best articles I have read about BCG is HERE.
The whole web site is extremely useful to understand the disease.
The whole web site is extremely useful to understand the disease.
You Know you are getting better when
I thought I'd note down that some normality is returning. After all the things that have happened to me; the blur that has been diagnosis, surgery and recovery at last I can see and feel changes - especially today as I can see me getting back to work full time and sorting out what I need to sort out.
So the title of this blog is You know you are getting better when:-
I shall keep my eye out for more observations and jot them down when I can.
So the title of this blog is You know you are getting better when:-
- You start to lay the law down in meetings
- You start asking really difficult questions
- You volunteer for certain tasks and projects
- You welcome a good argument about a project
- You start making executive decisions knowing you can back them up
I shall keep my eye out for more observations and jot them down when I can.
Book or Blog Titles
Lying around and making notes yesterday it occurred to me that there could be some interesting book titles about Bladder Cancer as opposed to the Scholarly ones I have seen to date - here are a few:-
- The Long and Short of it
- Extracting the Urine
- Shaken not Stirred
- Getting Bladdered
- A Sharp Intake of Breath
- Size Matters
- All Men are the Same Lying Down - a Urology Nurse's View
- Stop that leak
- Bladder Farts Don't Smell
- Light at the End of the Tunnel
- Willy's Progress
- The Catheters were not a Southern French Religious Group?
I'm sure you can think of more.
Bladder Farts
I know! I had to bring things back to basics. No matter what you say, a Fart is one of the funniest things. My children derive no end of amusement, to almost hurting themselves with laughter.
So yesterday, I was on the listen. You see last week, and the week before, I thought I had heard wind coming out when I was peeing - and not from where it traditionally does!
So this week, when voiding the BCG mixture out, there it was, two farts! Excellent! :-)
I suppose air must get instilled with the mixture of BCG as it is inserted (there must be some air in the Catheter.
So there you go, I told the children who, predictably, fell about in a heap laughing. even I thought it was funny but had to make sure I didn't laugh too hard in case I erupted another bladder fart :-)
So yesterday, I was on the listen. You see last week, and the week before, I thought I had heard wind coming out when I was peeing - and not from where it traditionally does!
So this week, when voiding the BCG mixture out, there it was, two farts! Excellent! :-)
I suppose air must get instilled with the mixture of BCG as it is inserted (there must be some air in the Catheter.
So there you go, I told the children who, predictably, fell about in a heap laughing. even I thought it was funny but had to make sure I didn't laugh too hard in case I erupted another bladder fart :-)
As well as could be expected
I changed the plan yesterday to have the painkillers and anti inflammatories after the 2 hour instilled period and before the side effect kicked in. This appears to have worked really well.
I did the usual turning regime and then waited an hour and voided that. There was a slight sting and some light blood but it was manageable. I then grabbed some food (don't take Ibuprofen on an empty stomach) and so had the tablets at about 2 1/2 hours after instillation. I then went to sleep for about 2 1/2 hours and then went to the toilet. Much better than the week before and there was only one stinging moment a little later on. By 9 p.m. I had eaten, had my second lot of tablets and was asleep. I woke at 10:30 and went to the toilet then and again at 5:30 this morning - no signs this morning so far.
This seems to have worked better than last week. Most of the symptoms whilst still there are so much more manageable than week 2.
I am now 2/3 rds of the way through my treatment. The Nurse was very good yesterday. I asked about the Catheter and she told me that it was lubricated and showed me the bag it cam in. She said they could not give a local anesthetic alongside the treatment. However, I'm not sure I'd want one as the one I had with the Flexible Cystoscopy invoked a stinging sensation that made me feel that I wanted to go to the toilet and that would not do for this.
Anyway, the stress ball took a pounding as the catheter went past the Prostate but other than that - if it is at all the right thing to say - things were a lot better yesterday than they have been. I also reckon one of the worries I had yesterday was that I knew it was going to be a different nurse - but she was really good. In fact they have all been absolutely marvellous - it cannot be easy for them having to deal with what could be an embarrassing thing to have done and also what can be a sensitive thing too.
I did the usual turning regime and then waited an hour and voided that. There was a slight sting and some light blood but it was manageable. I then grabbed some food (don't take Ibuprofen on an empty stomach) and so had the tablets at about 2 1/2 hours after instillation. I then went to sleep for about 2 1/2 hours and then went to the toilet. Much better than the week before and there was only one stinging moment a little later on. By 9 p.m. I had eaten, had my second lot of tablets and was asleep. I woke at 10:30 and went to the toilet then and again at 5:30 this morning - no signs this morning so far.
This seems to have worked better than last week. Most of the symptoms whilst still there are so much more manageable than week 2.
I am now 2/3 rds of the way through my treatment. The Nurse was very good yesterday. I asked about the Catheter and she told me that it was lubricated and showed me the bag it cam in. She said they could not give a local anesthetic alongside the treatment. However, I'm not sure I'd want one as the one I had with the Flexible Cystoscopy invoked a stinging sensation that made me feel that I wanted to go to the toilet and that would not do for this.
Anyway, the stress ball took a pounding as the catheter went past the Prostate but other than that - if it is at all the right thing to say - things were a lot better yesterday than they have been. I also reckon one of the worries I had yesterday was that I knew it was going to be a different nurse - but she was really good. In fact they have all been absolutely marvellous - it cannot be easy for them having to deal with what could be an embarrassing thing to have done and also what can be a sensitive thing too.
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