I received a letter from the Insurance Company. The letter they sent in October hasn't been actioned by the Hospital. Six weeks would seem long enough. the trouble is that it is one of those ticks in the box I want out of the way. Treatment [tick], recovery [tick], holidays sorted[tick], Insurance [Tick], Biopsy Operation [Tick], Diagnosis and future plan [Tick]....
Let's hope that the Hospital get the reminder today and send back the form and we can all move on again. It would get it out of the way and stop part of the FUD that goes with all of this.
Tuesday, December 05, 2006
Can it be Cured?
I don't think Bladder Cancer is one that gets cured. I think you get remission on this one (I could be wrong I need to check it).
Some Cancers can be cured, some of course get cured as the radical surgery removes the infected organ entirely. I suppose if they do that then perhaps it is cured in Bladder Cancer cases.
I state this only in as much as someone dropped me a line hoping that I'd be cured. I'll have to do a bit more research on this one.
Some Cancers can be cured, some of course get cured as the radical surgery removes the infected organ entirely. I suppose if they do that then perhaps it is cured in Bladder Cancer cases.
I state this only in as much as someone dropped me a line hoping that I'd be cured. I'll have to do a bit more research on this one.
Different Again
Well that treatment was different again to the last one. The instillation was much easier and less uncomfortable. The frequency of going to the toilet was down and so was the pain level. I could be getting used to it I suppose but I doubt it. I again waited until after the two hours to have the Paracetamol and Ibuprofen. I then slept for 2 1/2 hours before waking to go to the toilet this time.
Whilst the frequency was down the level of gunge and clots coming out were more pronounced and this morning quite the largest two I have ever seen.
I am feeling very well again and my body is warm all over which I have tended to notice over the past few weeks.
So an interesting change in side effects. I spoke to the Nurse yesterday about everyone else having colds and I have to let them know if I get a cold especially Flu or Flu like symptoms, additionally if I get a chesty cold too. In the latter cases they would delay treatment - something I do not want at all.
The Urology Nurses are very good and I liked the comment about this nurse needing her sticky labels - I asked if I'd get one for being a good boy? No - these are to put on the treatment syringe which she actually showed me. I still reckon that the syringe and all the equipment hanging off it (tubes and bits), if it were a real injection would make you pass out in fear. It is massive.
I'm up and about early again this morning and fully with it. A little discomfort and that is about it so we will see how the rest of the day goes.
Whilst the frequency was down the level of gunge and clots coming out were more pronounced and this morning quite the largest two I have ever seen.
I am feeling very well again and my body is warm all over which I have tended to notice over the past few weeks.
So an interesting change in side effects. I spoke to the Nurse yesterday about everyone else having colds and I have to let them know if I get a cold especially Flu or Flu like symptoms, additionally if I get a chesty cold too. In the latter cases they would delay treatment - something I do not want at all.
The Urology Nurses are very good and I liked the comment about this nurse needing her sticky labels - I asked if I'd get one for being a good boy? No - these are to put on the treatment syringe which she actually showed me. I still reckon that the syringe and all the equipment hanging off it (tubes and bits), if it were a real injection would make you pass out in fear. It is massive.
I'm up and about early again this morning and fully with it. A little discomfort and that is about it so we will see how the rest of the day goes.
Monday, December 04, 2006
That wasn't so bad
Apparently I have a tight urethra hence it is a little more painful for my treatment. I was hoping they wouldn't mention size at all really :-)
Actually, I can't put my hand on my heart and say that it hurts. It is unpleasant and uncomfortable and you get a sharp gasp as the catheter passes the Prostate but other than that it isn't like thumping your thumb with a hammer or cutting yourself. I'll not mention pricking yourself as I know that the audience for this blog has a strange sense of humour :-)
It is brilliant to know that I only have one more of these to go.
More later - off to lie down now I have done my 15 minutes a side routine.
Actually, I can't put my hand on my heart and say that it hurts. It is unpleasant and uncomfortable and you get a sharp gasp as the catheter passes the Prostate but other than that it isn't like thumping your thumb with a hammer or cutting yourself. I'll not mention pricking yourself as I know that the audience for this blog has a strange sense of humour :-)
It is brilliant to know that I only have one more of these to go.
More later - off to lie down now I have done my 15 minutes a side routine.
5th Treatment
Here we go - 5th treatment of 6 looms large today. I had a much better night's sleep than I normally do before these. The Appointment is earlier too. I am going to re-run last week's timetable which ensured I had an easier time of the side effects.
I only hope I don't crush the stress ball too much
I only hope I don't crush the stress ball too much
Sunday, December 03, 2006
Exercise
I managed to get out a couple of times down the week and so far I have been out walking every Sunday. The muscles around my stomach are where the problem seems to be and I am hoping that as I increase the exercise I can get them working better and tightening back up. Also I need to lose some more weight. I've lost a little but I really need to lose some more. I am eating sensibly now and not snacking as I'm not just sitting around anymore.
I suppose putting on weight could be viewed as a good sign but really I need to be back down to where I was beforehand.
I suppose putting on weight could be viewed as a good sign but really I need to be back down to where I was beforehand.
All Around me are ill
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.
I'll have to have a chat with the Nurse tomorrow and see what that is all about.
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.
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