We made £3500 on Saturday at the old people's home. That will allow us to finance the new garden furniture. They have a lovely garden area where we also hold the Easter Egg Hunt and the existing parasols are beginning to get worn out and we need decent ones as they get so much usage.
I didn't think we could make that sort of money on the day and it is easily the most we have ever made.
To think that this time last year I hadn't even heard of Bladder Cancer!
Monday, May 07, 2007
Changed the Exercise back upto the next level
I have been working my way back up to the levels of fitness I was at prior to going into hospital. It may surprise you just how much a short procedure like I had takes out of you.
It has taken me close to 3 weeks to get back to where I was. Today I upped to a 30 minutes straight routine on one of the harder programmes. I normally do 3 lots of 10 minutes on a relatively simple 3 peaks of effort in each 10 minutes. The one I did today takes you gradually upwards 3 times to three plateaus of effort.
There are a few reasons that you cannot do exercises straight away - one is that you have a number of cuts inside your bladder and they are healing, the other is that you are pretty sore from the pulling around and you feel a bit groggy from the anaesthetic. When the use a rigid cystoscope they also stretch you out internally. Your urethra - now ladies, your transit is a bit better than us lads is the way they get in to undertake the procedure. If you imagine the lads urethra goes up then bends down and back up through the prostate and then into the bladder so a sort of "S" shape. Well sticking that pipe in you straightens everything out and believe me, whilst it isn't painful particularly but it is uncomfortable and this also sort of limits your ability to climb Mount Everest or even do a little off road cycling. You can imagine that the bladder being balloon shaped means that the pipe needs to be viewed from some pretty odd angles and be twisted and pulled into place. Thank goodness you are knocked out during this procedure. You certainly don't want to start exercising before a week is up - I think that I waited for a week and a half.
Anyway, so almost three weeks after I started again I am back to where I was and ready to go on a bit further. It is surprising how much it takes out of you. I can see why I was so weak last time I had the more major procedure.
It has taken me close to 3 weeks to get back to where I was. Today I upped to a 30 minutes straight routine on one of the harder programmes. I normally do 3 lots of 10 minutes on a relatively simple 3 peaks of effort in each 10 minutes. The one I did today takes you gradually upwards 3 times to three plateaus of effort.
There are a few reasons that you cannot do exercises straight away - one is that you have a number of cuts inside your bladder and they are healing, the other is that you are pretty sore from the pulling around and you feel a bit groggy from the anaesthetic. When the use a rigid cystoscope they also stretch you out internally. Your urethra - now ladies, your transit is a bit better than us lads is the way they get in to undertake the procedure. If you imagine the lads urethra goes up then bends down and back up through the prostate and then into the bladder so a sort of "S" shape. Well sticking that pipe in you straightens everything out and believe me, whilst it isn't painful particularly but it is uncomfortable and this also sort of limits your ability to climb Mount Everest or even do a little off road cycling. You can imagine that the bladder being balloon shaped means that the pipe needs to be viewed from some pretty odd angles and be twisted and pulled into place. Thank goodness you are knocked out during this procedure. You certainly don't want to start exercising before a week is up - I think that I waited for a week and a half.
Anyway, so almost three weeks after I started again I am back to where I was and ready to go on a bit further. It is surprising how much it takes out of you. I can see why I was so weak last time I had the more major procedure.
It still amazes me that people think I am cured
Casting aside that meat can be cured of course! Yes, it is strange that the downgrade has implications like "So that is it and it is all over?" and I have to politely explain that well, it really is the next part of the journey - I've only just begun if the truth be known.
Interestingly phase 1 is over and miracle of miracles, downgrading means that they got rid of the Carcinoma in Situ in the lining of the bladder and it looks like (I'll know soon) a small tumour that perhaps was seeded last time - who knows. After the next little cycle of treatment I expect to start to get back to "normal" although I very much doubt that anything can be considered normal anymore.
The trouble with bladder cancer is that it comes back and it can come back years afterwards - it is the most costly of diseases because of that. The good news is that you get constantly monitored (it ain't nice but you do get monitored). The other good news is that they can control it and that when you get it in the format I had it in, you can cut it out, treat it and in 80% of the cases you can halt it and regress it (like they have in me).
But you don't actually get cured this soon, nor does it mean that you are at any less risk. 2/3 rds of people get a recurrence. So I also need to temper the excitement and current elation so that should I get it again it will not be a crushing disappointment. As you can imagine, to have to go through the operations again would be pretty soul destroying but if that is what needs to happen then so be it.
So now I am telling people that it isn't cure, it is downgrading, it means ongoing treatment - perhaps for up to 10 years and then, and only then, if I have been clear all that time, they may say that it is cured. Gives you something to mull over with your cornflakes & coffee in the morning that I'll be seeing a lot more of the Hospital in one way or the other, that I'll be continuing the BCG treatment regimen and that they will still be sticking little cameras into me for a good few years yet.
At least my GP doesn't need to see me for a month and by then I hope to have this blood glucose problem fixed. One of the major things I think I did was to come off the carbohydrates so suddenly and so completely. Apparently I ought to just get that balance right which I intend to do. I made the first steps with that today and will be ensuring that I get that right in the coming weeks.
Interestingly phase 1 is over and miracle of miracles, downgrading means that they got rid of the Carcinoma in Situ in the lining of the bladder and it looks like (I'll know soon) a small tumour that perhaps was seeded last time - who knows. After the next little cycle of treatment I expect to start to get back to "normal" although I very much doubt that anything can be considered normal anymore.
The trouble with bladder cancer is that it comes back and it can come back years afterwards - it is the most costly of diseases because of that. The good news is that you get constantly monitored (it ain't nice but you do get monitored). The other good news is that they can control it and that when you get it in the format I had it in, you can cut it out, treat it and in 80% of the cases you can halt it and regress it (like they have in me).
But you don't actually get cured this soon, nor does it mean that you are at any less risk. 2/3 rds of people get a recurrence. So I also need to temper the excitement and current elation so that should I get it again it will not be a crushing disappointment. As you can imagine, to have to go through the operations again would be pretty soul destroying but if that is what needs to happen then so be it.
So now I am telling people that it isn't cure, it is downgrading, it means ongoing treatment - perhaps for up to 10 years and then, and only then, if I have been clear all that time, they may say that it is cured. Gives you something to mull over with your cornflakes & coffee in the morning that I'll be seeing a lot more of the Hospital in one way or the other, that I'll be continuing the BCG treatment regimen and that they will still be sticking little cameras into me for a good few years yet.
At least my GP doesn't need to see me for a month and by then I hope to have this blood glucose problem fixed. One of the major things I think I did was to come off the carbohydrates so suddenly and so completely. Apparently I ought to just get that balance right which I intend to do. I made the first steps with that today and will be ensuring that I get that right in the coming weeks.
Sunday, May 06, 2007
A late Sunday again
Perhaps it is just me getting towards the end of the week but it was again a lie in Sunday today - I was awake but really just didn't feel like facing the world and so just lay there day dreaming. I appear to pay for it later - like now as I am wide awake.
Maybe exercising late on a Saturday night didn't help either.
Maybe exercising late on a Saturday night didn't help either.
Saturday, May 05, 2007
After two nights out this week and today's indiscretion
I should have expected the scales to tell a tale! They did, I've put a kilo on by the looks of things although the scales were hovering around a bit.
I had a four course meals on Tuesday, a three course meal on Wednesday and of course a burger and some sausages today!
As many people have said before it is easier to put weight on than take it off. Mind you I am still heavier than I was this time last year by a good 6 kilo.
I do like my GP's words though - he was saying about not living like a hermit and to vary food and to do things in moderation. I heard someone discussing a lady of 100 who reckoned that she had lived that long through moderation in all things. She had in fact decided to give up smoking when she was 95 :-) Brilliant.
I had a four course meals on Tuesday, a three course meal on Wednesday and of course a burger and some sausages today!
As many people have said before it is easier to put weight on than take it off. Mind you I am still heavier than I was this time last year by a good 6 kilo.
I do like my GP's words though - he was saying about not living like a hermit and to vary food and to do things in moderation. I heard someone discussing a lady of 100 who reckoned that she had lived that long through moderation in all things. She had in fact decided to give up smoking when she was 95 :-) Brilliant.
Saturday Night - Nothing on TV and you did what?
NO - Not what you were thinking! Or at least I don't think it was thinking what you were thinking.
No I decided to get onto the exercise machine and punch out 30 minutes worth of exercise on a slightly higher setting. That will make up for the burger I accidentally ate at the Spring Fair - oh and the Pork and Leek sausage, well when I say sausage I really ought to say sausages. Well they were going to get thrown away otherwise and so I helped out - they were tasty though.
I have part repented by overdoing the fruit this afternoon but then again, I accidentally had two pints of beer on the way home too. As you can imagine, they needed to be forced down me :-)
Who am I kidding :-)
No I decided to get onto the exercise machine and punch out 30 minutes worth of exercise on a slightly higher setting. That will make up for the burger I accidentally ate at the Spring Fair - oh and the Pork and Leek sausage, well when I say sausage I really ought to say sausages. Well they were going to get thrown away otherwise and so I helped out - they were tasty though.
I have part repented by overdoing the fruit this afternoon but then again, I accidentally had two pints of beer on the way home too. As you can imagine, they needed to be forced down me :-)
Who am I kidding :-)
It was a bit cold
I don't think I want to trust the weather man again. Said that the cloud would burn off by 10 and it would be a good day so I turned up in a tee shirt and froze as I was on car park duty! After freezing away all morning - you've guessed it, when I got home the sun came out and it has been lovely this afternoon.
I've escaped upstairs as they are watching Borat and - I'm afraid it really isn't to my taste.
It quite took my mind of everything else today which is great and it is only now that I have even thought about things. Long may that continue to happen.
I've escaped upstairs as they are watching Borat and - I'm afraid it really isn't to my taste.
It quite took my mind of everything else today which is great and it is only now that I have even thought about things. Long may that continue to happen.
Friday, May 04, 2007
Are you really a fraud because you survived?
It is a strange thing. I spoke to someone else who mentioned that he felt that his cancer was fraud as he recovered and is healthy again. I think I felt a bit "strange" about it at first - having cancer - I mean you cannot take that sort of information in easily. The first reaction is normally two sided - one - a relief at least you know what it is or what you guessed it was, you knew you were pretty ill but hadn't grasped it all and of course then you get home and you go through the "I'm going to die" bit. Now frankly that isn't nice. A little later on you begin to get used to the fact that (in my case) you have a pretty good chance of surviving this.
When I speak to most people they say I have been through a hell of a lot and I suppose, looking back at some of the stuff I've written, I probably have but you don't really have a choice in this. well you do I suppose but I chose to have the treatments. So given that the treatment isn't comfortable or by any means over yet, people wonder why I think sometimes that I'm a bit of a fraud.
I think I guessed why that is today. It is because I survived it, because you expect to get cancer and die and in reality that isn't the case (I at least know that now). However, when you see people going through far worse, or getting a terminal prognosis you kind of feel guilty. Yet, knowing people who are getting the all clear and being discharged - I am so happy for them. It is all a bit strange but then that is the disease all over. The common misconception about cancer is that it kills you - if it doesn't you feel there is something wrong with you! How stupid is that :-)
I find the logic of some of the things I think utterly bizarre - cancer makes you far more inward looking and thinking perhaps I think too much and don't let things just happen to me.
So - enough of the deep and meaningful stuff for the moment - a bank holiday weekend beckons. Tomorrow I am off to help the annual Spring Fair - I do the Car Park duty which is OK.
When I speak to most people they say I have been through a hell of a lot and I suppose, looking back at some of the stuff I've written, I probably have but you don't really have a choice in this. well you do I suppose but I chose to have the treatments. So given that the treatment isn't comfortable or by any means over yet, people wonder why I think sometimes that I'm a bit of a fraud.
I think I guessed why that is today. It is because I survived it, because you expect to get cancer and die and in reality that isn't the case (I at least know that now). However, when you see people going through far worse, or getting a terminal prognosis you kind of feel guilty. Yet, knowing people who are getting the all clear and being discharged - I am so happy for them. It is all a bit strange but then that is the disease all over. The common misconception about cancer is that it kills you - if it doesn't you feel there is something wrong with you! How stupid is that :-)
I find the logic of some of the things I think utterly bizarre - cancer makes you far more inward looking and thinking perhaps I think too much and don't let things just happen to me.
So - enough of the deep and meaningful stuff for the moment - a bank holiday weekend beckons. Tomorrow I am off to help the annual Spring Fair - I do the Car Park duty which is OK.
Oh - That's Alright Then
That's good. The Doc called and whilst the readings are high, the trend is only recent and there is no trace of these problems in the past (apparently you can tell based over some months back!). Meaning that I need to go and see him in a month - yea - I bet I'll have to have another blood test :-( however. the kidney function hasn't changed and so I'm back on the Ace Inhibitors.
The concern is still there that there is some glucose intolerance but that is going down and so at least I can be observed. It is possible it is to do with the pulling and poking around at the Hospital and I've no doubt that is so.
I would imagine that my body wonders quite what the hell I've done to it as well, it has had a complete change in diet in the past month and a half - I imagine it is traumatised and shocked! Poor old thing...
The concern is still there that there is some glucose intolerance but that is going down and so at least I can be observed. It is possible it is to do with the pulling and poking around at the Hospital and I've no doubt that is so.
I would imagine that my body wonders quite what the hell I've done to it as well, it has had a complete change in diet in the past month and a half - I imagine it is traumatised and shocked! Poor old thing...
It is all go today
This working for a living is a bit of a drag isn't it?
I suppose someone has to do it and it might as well be me!
Actually it is quietly quite exciting doing this sort of stuff again. Don't tell anyone that I like it though.....
I suppose someone has to do it and it might as well be me!
Actually it is quietly quite exciting doing this sort of stuff again. Don't tell anyone that I like it though.....
A Sad to read note this morning
I follow a fellow sufferer's blog and was extremely sad to read this blog this morning (HERE)
Whilst I am sad about that news I am very thankful that I don't have that decision to make right now. This sort of decision puts everything else in perspective.
I must also get out of the habit of apologising for surviving.
Whilst I am sad about that news I am very thankful that I don't have that decision to make right now. This sort of decision puts everything else in perspective.
I must also get out of the habit of apologising for surviving.
Thursday, May 03, 2007
Doc didn't get back to me
I was expecting a phone call to get my blood pressure pills renewed (or not) but nothing so far - I will have to ring tomorrow to see what has happened - I fully expect to get called in again and to have to work on something to do with high blood glucose levels!
Oh well, I'll see what tomorrow brings. Luckily I am working from home tomorrow so can go and get a prescription or go see the doc if needed.
I had a few calls about a contract starting in a week or two and I've sent off my CV for that. My next appointment with the Hospital has been confirmed for the 15th May in the late afternoon. Again, hopefully I will then know what is going to happen there too.
Oh well, I'll see what tomorrow brings. Luckily I am working from home tomorrow so can go and get a prescription or go see the doc if needed.
I had a few calls about a contract starting in a week or two and I've sent off my CV for that. My next appointment with the Hospital has been confirmed for the 15th May in the late afternoon. Again, hopefully I will then know what is going to happen there too.
Work - a four letter word
It was OK this morning I suppose. It took a while to get together what I needed to do the job but there you go! I have all I need and am back at home working out how I am going to do it and in what order.
It is quite nice to be working again but what a horrible location to get to and from - I wouldn't want to do that every day.
It is quite nice to be working again but what a horrible location to get to and from - I wouldn't want to do that every day.
Wednesday, May 02, 2007
Went Really Well
I did my talk this evening and it went down really well or appeared to. That was a relief as I had to change it a little and so it was the first time that I had delivered it, in its new format.
It appears to have done the trick as there was lots of interest and a commitment to become Patron of the Association from the Lodge which is great. A lot of people also want to become life members of Patrons themselves which again all adds to the efforts.
It appears to have done the trick as there was lots of interest and a commitment to become Patron of the Association from the Lodge which is great. A lot of people also want to become life members of Patrons themselves which again all adds to the efforts.
It was a long day yesterday
I am as tired as you like today and I've got to go out again tonight and give a talk about the work I do at the Old Folk's home. Tomorrow I am actually going to be doing some work - I know it is hard to believe isn't it :-)
Might be a day or perhaps two days work. Not sure if the GP will want to see me on Friday to screw up my second paid day though - I'll find out on his return tomorrow.
Might be a day or perhaps two days work. Not sure if the GP will want to see me on Friday to screw up my second paid day though - I'll find out on his return tomorrow.
Why not leave it until the last minute?
Oh - you did. Stuff that should have been done a few weeks ago has only just arrived with me and it needs to be done? That's right - Now.
What do these people think like? Now it is with me they think that it is off their hands and they can of course blame me for it being late.
One day I think I will actually let them down and then lets see what happens.
What do these people think like? Now it is with me they think that it is off their hands and they can of course blame me for it being late.
One day I think I will actually let them down and then lets see what happens.
Selfish Git
I am a selfish git. I am sorry that this is all about ME. I cannot see anything past me, my family and me.
It isn't meant to be shocking I think it is just the truth that, all of a sudden, you cannot care for anyone else any more. You are for you and yours and that is the lot.
I give all the time, I give to anyone without any thought to race, colour or creed - it was how I was brought up and it is what I believe in.
Now though - I look on some people as bloody spongers - I don't tell them that but I watched a few "performances" today and I don't believe half of it. I'm turning into the sort of person my parents warned me about!
It isn't meant to be shocking I think it is just the truth that, all of a sudden, you cannot care for anyone else any more. You are for you and yours and that is the lot.
I give all the time, I give to anyone without any thought to race, colour or creed - it was how I was brought up and it is what I believe in.
Now though - I look on some people as bloody spongers - I don't tell them that but I watched a few "performances" today and I don't believe half of it. I'm turning into the sort of person my parents warned me about!
I Don't know!
Interesting comment received earlier. I'm in that mid point, that indecisive bit of wherever I am. I feel like Alice - literally not metaphorically - I don't actually know whether to laugh, cry, dissolve, scream or just go and be ME - quiet guy in the corner?
They don't want to see me for another 2 weeks. That screw my plans. Everything now goes back another two weeks.
Point One - They aren't screaming to see me now! Good news - low risk
Point Two - I have to wait two weeks before being told that I need to go onto maintenance which I know (I Think) already.
I'm feeling tearful about that - only that it sets everything back another two weks, I should have really known last week or this week. Now everything is delayed by two weeks and it isn't my fault.
They don't want to see me for another 2 weeks. That screw my plans. Everything now goes back another two weeks.
Point One - They aren't screaming to see me now! Good news - low risk
Point Two - I have to wait two weeks before being told that I need to go onto maintenance which I know (I Think) already.
I'm feeling tearful about that - only that it sets everything back another two weks, I should have really known last week or this week. Now everything is delayed by two weeks and it isn't my fault.
A good day with one exception
I have had a great day. I've met new people and I've carried the heaviest sword you can ever believe!
However - what is annoying to me tonight is about my Cab journey from the station. I asked him to pull over and he swerved the cab all over the place throwing me out of my seat. I wouldn't mind but all he had to do was to stop the cab slowly like all the other cab drivers normally do. No swerves, up the curb, off the curb and back again just as I was taking my seat belt off! BASTARD! Not funny. He and I will meet again one day and the fun will be on my boot.
What an absolute idiot. "Are you alright?" he asked. "Sure - I didn't expect you to drive up the curb and stop quite like that!" - No answer. £5.40 Guv. Great here is £5.50 keep the change!
I wish these arseholes would work out their problems on themselves not on their passengers - we pay their wages after all.
However - what is annoying to me tonight is about my Cab journey from the station. I asked him to pull over and he swerved the cab all over the place throwing me out of my seat. I wouldn't mind but all he had to do was to stop the cab slowly like all the other cab drivers normally do. No swerves, up the curb, off the curb and back again just as I was taking my seat belt off! BASTARD! Not funny. He and I will meet again one day and the fun will be on my boot.
What an absolute idiot. "Are you alright?" he asked. "Sure - I didn't expect you to drive up the curb and stop quite like that!" - No answer. £5.40 Guv. Great here is £5.50 keep the change!
I wish these arseholes would work out their problems on themselves not on their passengers - we pay their wages after all.
Tuesday, May 01, 2007
New Day - New Way of Viewing Things
Yes, a new day and one I am out to thoroughly enjoy. The weather is brilliant not a cloud in the sky and I'll be heading off to London in about half an hour to rehearse and then meet some friends for lunch.
Everything happens from 3 pm this afternoon - then we have a few beers followed by a meal and wind our way home.
At least that will take my mind off of things for a while.
Everything happens from 3 pm this afternoon - then we have a few beers followed by a meal and wind our way home.
At least that will take my mind off of things for a while.
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