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.
Friday, December 08, 2006
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...
The Long Distance Pee
I seem to be back to the every 15 minute routine (actually it hasn't been that bad). I can't see that I have drunk anymore than I normally do. Perhaps I ought to keep records. I do on treatment day so I know how many pints of water I have had post treatment and when I went and what the results were.
It has actually settled down now but late this morning I was in and out all over the place.
It has actually settled down now but late this morning I was in and out all over the place.
Navel Gazing
Strange past time. Trying to get people to look up and ahead is interesting. You can warn you can explain, you can talk but you cannot make people listen. It amuses me no end when we get to the point where it has all gone pear shaped and I wonder whether to utter those word "I told you so". The fun part is the person it happens to has absolutely no idea what is coming down the road to hit them and it comes as a complete surprise.
One of my favourite sayings is "I may not always be right; but I am NEVER wrong".
One of my favourite sayings is "I may not always be right; but I am NEVER wrong".
Not a lot better this morning
I can still feel the anger inside me. Whilst I'm not as angry this morning as I was yesterday I have to admit to being quite up for an outburst or two at this moment. It is probably the way I am feeling about myself and what I have and why no one else can see it the same way I do - I think.
I didn't know anything about Cancer before I got it and so it would be difficult for me to understand a colleague or friend with it. In fact, it was only after I got this that I fully comprehended how some of my friends who have gone through other Cancers must have felt, hurt and recovered.
Perhaps I need to communicate more and try and give them some understanding of what it is really like? The trouble is, you tend to sound "attention seeking" or worse "self centred" but you don't really mean to be. My "honest this is how it is" approach also has its drawbacks as it is probably too much detail and quite disturbing?
So perhaps that is it. Work, in contact with real people (face 2 face) looms large and perhaps their grasp of the situation will need managing so that they get it.
Right, that's enough of the deep and meaningful stuff on a Wednesday - time to get on with some work.
I didn't know anything about Cancer before I got it and so it would be difficult for me to understand a colleague or friend with it. In fact, it was only after I got this that I fully comprehended how some of my friends who have gone through other Cancers must have felt, hurt and recovered.
Perhaps I need to communicate more and try and give them some understanding of what it is really like? The trouble is, you tend to sound "attention seeking" or worse "self centred" but you don't really mean to be. My "honest this is how it is" approach also has its drawbacks as it is probably too much detail and quite disturbing?
So perhaps that is it. Work, in contact with real people (face 2 face) looms large and perhaps their grasp of the situation will need managing so that they get it.
Right, that's enough of the deep and meaningful stuff on a Wednesday - time to get on with some work.
Tuesday, December 05, 2006
An Angry Day
Tuesday has been an angry day. I didn't get done what I wanted to get done. Stuff got switched around and totally screwed my day up. I had a sense of humour failure on a number of things. the Insurance, Work, Projects and generally me being fed up.
I hope tomorrow is a little bit better. Not that I don't feel well, just one of those days. I must be careful not to use the "who gives a s**t" sort of answers when discussing some insignificant point at work. Careful son, careful :-)
I'll bid you good night as I ought to get some sleep and forget about today altogether!
I hope tomorrow is a little bit better. Not that I don't feel well, just one of those days. I must be careful not to use the "who gives a s**t" sort of answers when discussing some insignificant point at work. Careful son, careful :-)
I'll bid you good night as I ought to get some sleep and forget about today altogether!
I don't think they got it
Yes, I'm certain that some people didn't really listen when I said I'd be back at work in January full time they have taken that to mean that this is the end of my treatment. In fact that is probably far from the truth. I am expecting that this is the beginning of my treatment. Let me explain:
The Cancer grade meant it needed an operation to get it manageable. The second operation was to attempt to get the grade to CIS which it is. After that - then treatment can begin. This batch of treatments are to stop recurrence of tumours. I thought I had explained that to them.
If this is successful then maintenance is an ongoing thing, for many years to try and control this.
It looks like I'll be explaining it to them slowly again until they wake up and get it.
The Cancer grade meant it needed an operation to get it manageable. The second operation was to attempt to get the grade to CIS which it is. After that - then treatment can begin. This batch of treatments are to stop recurrence of tumours. I thought I had explained that to them.
If this is successful then maintenance is an ongoing thing, for many years to try and control this.
It looks like I'll be explaining it to them slowly again until they wake up and get it.
A Bit Annoying
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.
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.
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
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