I am getting back to some normality. I wonder if sticking that Catheter into you straightens you out or bruises or scratches you. I don't know but it is darn difficult to go to the loo at the moment without it making you go Ohhhh or Owwww or some such expletive.
At least the pills kicked in nicely and so whilst I can feel somewhat sore around the middle at least I can move around without too much difficulty.
Tuesday, July 10, 2007
Future Treatment
I got a surprise yesterday.
The Urology Nurses always say that if we meet again that it is a GOOD thing as that means that you are on maintenance and can also tolerate the treatment. It means that they are keeping their eye on you. Maintenance (and I keep banging on about this) is where - if you are clear, you get 3 shots of BCG, they wait a period of time and you get a flexible cystoscopy and if still clear you get another 3 shots and wait a longer period and get another 3 and so on until it gets to a point that if you have had no recurrence in the gap in between (which is then measured in years) - you are nigh on cured.
So the surprise came when she said that I might not need any further treatments at all. Now that IS a surprise. I'm still of the opinion that I'll need them only because of the staging and grade of the original tumour. Whilst it was called "superficial" it was anything but.
I'll have to wait and see but no treatments just a peek and poke every 3 or 6 months. Given the working over I had yesterday, I can see that it would be nice not to but these odd days of getting the stuffing knocked out of you are actually doing you good.
Always thought it was a perverse thing to say that the stuff that was making you better does it by making you feel bad? Where was Mary Poppins when I needed her? Not that sugar in my medicine would have made it any better!
The Urology Nurses always say that if we meet again that it is a GOOD thing as that means that you are on maintenance and can also tolerate the treatment. It means that they are keeping their eye on you. Maintenance (and I keep banging on about this) is where - if you are clear, you get 3 shots of BCG, they wait a period of time and you get a flexible cystoscopy and if still clear you get another 3 shots and wait a longer period and get another 3 and so on until it gets to a point that if you have had no recurrence in the gap in between (which is then measured in years) - you are nigh on cured.
So the surprise came when she said that I might not need any further treatments at all. Now that IS a surprise. I'm still of the opinion that I'll need them only because of the staging and grade of the original tumour. Whilst it was called "superficial" it was anything but.
I'll have to wait and see but no treatments just a peek and poke every 3 or 6 months. Given the working over I had yesterday, I can see that it would be nice not to but these odd days of getting the stuffing knocked out of you are actually doing you good.
Always thought it was a perverse thing to say that the stuff that was making you better does it by making you feel bad? Where was Mary Poppins when I needed her? Not that sugar in my medicine would have made it any better!
Trying to get back to bed was crazy
Phone calls, door bell.
So I've had a shower, had my usual morning meds and also now had some ibuprofen and paracetamol which I am hoping will take some of this throbbing (the only word I can think that describes it) away. I feel like I have been punched in the stomach or just below and am sore all around my middle. I daren't tell you what the other part of my anatomy is feeling but it isn't at all pleasant :-)
So thank goodness the last one for a while. I have a feeling this will take most of the week to recover from.
So I've had a shower, had my usual morning meds and also now had some ibuprofen and paracetamol which I am hoping will take some of this throbbing (the only word I can think that describes it) away. I feel like I have been punched in the stomach or just below and am sore all around my middle. I daren't tell you what the other part of my anatomy is feeling but it isn't at all pleasant :-)
So thank goodness the last one for a while. I have a feeling this will take most of the week to recover from.
Ow - Knocked sideways
I've just got up and got myself a drink but I'm going to go back to bed. I'm still getting bladder spasms and it hurts to pee. This morning there isn't any debris or blood but last night was pretty bad.
More reports later. Probably the second worst side effects I have ever had. If I hadn't of had the pain killers then this could easily rank as the worst. I'm sure that is the nearest a bloke can get to feeling like he has given birth :-)
More reports later. Probably the second worst side effects I have ever had. If I hadn't of had the pain killers then this could easily rank as the worst. I'm sure that is the nearest a bloke can get to feeling like he has given birth :-)
Monday, July 09, 2007
Not a good one
Are there any good ones?
Wallop - this is turning out to be a thwack with the man in the truck again. I'm just going downstairs for some food and some more tablets - my bladder is palpitating and it must sound like I'm giving birth when I go to the loo :-)
More tomorrow. Ouch!
Wallop - this is turning out to be a thwack with the man in the truck again. I'm just going downstairs for some food and some more tablets - my bladder is palpitating and it must sound like I'm giving birth when I go to the loo :-)
More tomorrow. Ouch!
Last time for a while that I need to do this
This? Going through my little rituals prior to having my treatment.
I cannot drink for 2 hours prior to having my treatment so I eat before 12 and have a cup of soup then. I will, in fact, not normally drink after 11:30 or earlier.
Other things like having a shave, getting ready, getting appointment cards and stress balls together, preparing the bedroom and toilet areas all eat up time in my ritual so that we can get to the Hospital, get in and get seen around about 2 pm and then get back and go through all the turning, pill popping and so on.
Curiously the things you miss are those little rituals - not for long though.
One of the things I don't do now is get down in time to watch the News anymore. I'm no longer ill or unemployed and so other things have taken over.
If all goes according to plan - then I should be back on the BCG regime in November or possibly December (I hope not then). That
I cannot drink for 2 hours prior to having my treatment so I eat before 12 and have a cup of soup then. I will, in fact, not normally drink after 11:30 or earlier.
Other things like having a shave, getting ready, getting appointment cards and stress balls together, preparing the bedroom and toilet areas all eat up time in my ritual so that we can get to the Hospital, get in and get seen around about 2 pm and then get back and go through all the turning, pill popping and so on.
Curiously the things you miss are those little rituals - not for long though.
One of the things I don't do now is get down in time to watch the News anymore. I'm no longer ill or unemployed and so other things have taken over.
If all goes according to plan - then I should be back on the BCG regime in November or possibly December (I hope not then). That
Disruption
It is amazing how disruptive having the treatments has been. Monday afternoon and much of Tuesday can be written off through recovery. Occasionally I can get some work done on Tuesday afternoon.
I have been loathe to drive too far on Wednesday for comfort reasons and also that I'm still not quite right. I can work at home and I can travel short distances but I couldn't easily walk to the station - be on my feet all day or drive further than about 30 minutes and then not in heavy traffic.
It makes trying to get things done interesting. I was looking at my schedule this week and frankly it is a nightmare. Compressing everything into three and a half days and restricting travel to Thursday and Friday do make challenges for scheduling my time. Given that I only have 8 1/2 working days left before my party and holiday also have come as a bit of a shock so - I am spending a bit of time arranging a schedule to get everything done.
I have been loathe to drive too far on Wednesday for comfort reasons and also that I'm still not quite right. I can work at home and I can travel short distances but I couldn't easily walk to the station - be on my feet all day or drive further than about 30 minutes and then not in heavy traffic.
It makes trying to get things done interesting. I was looking at my schedule this week and frankly it is a nightmare. Compressing everything into three and a half days and restricting travel to Thursday and Friday do make challenges for scheduling my time. Given that I only have 8 1/2 working days left before my party and holiday also have come as a bit of a shock so - I am spending a bit of time arranging a schedule to get everything done.
Sunday, July 08, 2007
Perversely looking forward to tomorrow
The last treatment of this set of six. I can see why a lot of people find them difficult to live with but it must be the same for anyone on Chemo or Radio as well. I feel I just get myself back to normal and feel better again when I have to go and have another and whatever side effects you get.
Bizarrely I find the fact that I am having these treatments to be a good thing. It means that everything I went through has had some result and some outcome and that this, unpleasant as it may appear to most and as tear jerking and scrotum clenching as it may sound, is probably a better thing, given my circumstances than the alternatives. You have to have been there and reviewed the possibilities to understand this though.
So tomorrow is another one of those milestones. It means the end of this lot of treatment and the stop watch now starts for three months to go back in and have the next operation for biopsies. I don't fancy that of course but I (again) have no option.
So getting tomorrow out of the way means that I can - in a week or so - restart my exercise regime - yes I stopped - as I just didn't feel fit enough to do it - :-) I can also forget about having Monday and Tuesday as days out from work or anything else I do.
In addition, I can look forward to the summer off and perhaps spend some time with the family - if I've done nothing else this past year I deserve some time to spend with them considering all the time they have spent with me.
So - out of the way at last. I make it that in the 53 weeks since I first noticed the symptoms that I have had something like 12 weeks under these treatments, 9 weeks in operations and recovery mode, a week in and out of my GP and for tests for that and a lot of odd days here and there in between mooching about. That is about 22 weeks - goodness knows what I have done with the other 30 weeks - written this blog I've no doubt :-)
Bizarrely I find the fact that I am having these treatments to be a good thing. It means that everything I went through has had some result and some outcome and that this, unpleasant as it may appear to most and as tear jerking and scrotum clenching as it may sound, is probably a better thing, given my circumstances than the alternatives. You have to have been there and reviewed the possibilities to understand this though.
So tomorrow is another one of those milestones. It means the end of this lot of treatment and the stop watch now starts for three months to go back in and have the next operation for biopsies. I don't fancy that of course but I (again) have no option.
So getting tomorrow out of the way means that I can - in a week or so - restart my exercise regime - yes I stopped - as I just didn't feel fit enough to do it - :-) I can also forget about having Monday and Tuesday as days out from work or anything else I do.
In addition, I can look forward to the summer off and perhaps spend some time with the family - if I've done nothing else this past year I deserve some time to spend with them considering all the time they have spent with me.
So - out of the way at last. I make it that in the 53 weeks since I first noticed the symptoms that I have had something like 12 weeks under these treatments, 9 weeks in operations and recovery mode, a week in and out of my GP and for tests for that and a lot of odd days here and there in between mooching about. That is about 22 weeks - goodness knows what I have done with the other 30 weeks - written this blog I've no doubt :-)
Not alone
I'd rather I was the only one suffering from cancer but you find that there are lots of you around. It is a bit like buying a Green Mondeo and then driving around and seeing every other car is the same as yours (well almost).
You talk to people and it comes out that you have cancer or are being treated to keep it away and then they tell you they have it or you talk to someone else and they tell you that someone else in the village has it and that comes as a shock. I almost fell into my trap the other day and said "they don't look like they've got cancer". I should know better. Both of my friends who's funerals are this week did - I am afraid to say - look as if they had cancer but treatment makes you loose your hair, jaundice and other physical signs also make you realise.
Apparently I just looked drawn and greyish. I was also a couple of stone heavier than I was when I went in. However I don't think I actually looked "ill"
So enough for now - the Tour is on the TV and I need to get ready to work out how in the household we can get to watch F1, the Men's Tennis (wife and 2 girls will watch that) and the Tour all at the same time! I have enough TVs and PCs with TV cards to do this - I need a plan that delivers the Wide Screen TV in the front room to me without it appearing that I planned it that way. If I offer to let the spend money at Bluewater - they'll smell a rat. Off now to work on my cunning and devious plan for World (no scrub that) total TV domination!!!
You talk to people and it comes out that you have cancer or are being treated to keep it away and then they tell you they have it or you talk to someone else and they tell you that someone else in the village has it and that comes as a shock. I almost fell into my trap the other day and said "they don't look like they've got cancer". I should know better. Both of my friends who's funerals are this week did - I am afraid to say - look as if they had cancer but treatment makes you loose your hair, jaundice and other physical signs also make you realise.
Apparently I just looked drawn and greyish. I was also a couple of stone heavier than I was when I went in. However I don't think I actually looked "ill"
So enough for now - the Tour is on the TV and I need to get ready to work out how in the household we can get to watch F1, the Men's Tennis (wife and 2 girls will watch that) and the Tour all at the same time! I have enough TVs and PCs with TV cards to do this - I need a plan that delivers the Wide Screen TV in the front room to me without it appearing that I planned it that way. If I offer to let the spend money at Bluewater - they'll smell a rat. Off now to work on my cunning and devious plan for World (no scrub that) total TV domination!!!
Saturday, July 07, 2007
To go and watch the Tour de France or not
We cannot make up our minds whether to go or not. Too much on all on one day - F1 at Silverstone, Men's Wimbledon and it seems a long travel and wait to see a couple of hundred bikes rush past and then spend a few hours getting home again.
So we decided that the best thing to do was to watch all three on TV - that way we all get to see what we want to see.
So we decided that the best thing to do was to watch all three on TV - that way we all get to see what we want to see.
7th July - and then it occurred to me
That whilst I was having my own battle to go across the threshold of the Doctor's door I hadn't realised that the 7th July was the anniversary of the London tube and bus bombings. I had been there the year before, just after they had gone off.
Until today I hadn't even linked the dates. Why should I - nothing else happened on the 7th July apart from me walking into the doctors and coming home in an absolute daze and then being so upset you cannot believe it.
Then the 21st July is the next date - when I was actually diagnosed. The 21st this year is the date of my birthday party - it is also the date of the second lot of London bombs which failed to go off.
The 25th July would be the next date to commemorate as that is the date of the operation which got rid of the tumour.
The dates are of course coincidental - I was just amazed that until today I hadn't linked the 7th with anything other than me!
Until today I hadn't even linked the dates. Why should I - nothing else happened on the 7th July apart from me walking into the doctors and coming home in an absolute daze and then being so upset you cannot believe it.
Then the 21st July is the next date - when I was actually diagnosed. The 21st this year is the date of my birthday party - it is also the date of the second lot of London bombs which failed to go off.
The 25th July would be the next date to commemorate as that is the date of the operation which got rid of the tumour.
The dates are of course coincidental - I was just amazed that until today I hadn't linked the 7th with anything other than me!
A sad week this coming week
There are three funerals next week. Two - those on Wednesday and Friday are people I knew who were diagnosed with cancer (lung and liver) and who didn't last very long at all. I cannot go to either of those. Both were unexpected and quite shocking in their own way. Both were past retirement age (but one only just so) - it doesn't make it right but it may help too position what follows:
On Thursday we will say goodbye to my friend's son who died at birth. His brother survived but is in intensive care - how do you even start to come to terms with that sort of tragedy? We were only speaking last week about the excitement of the birth and all. I spoke briefly to my friend last night about the mixture of sadness and joy it is very difficult to come to terms with two events so closely linked that could possibly leave you with such bitter sweet thoughts. I said that I was finding difficulty in finding something suitable to send as whilst one son had died we also needed to be fighting the other little fella's corner whilst he battles too. Not easy is it?
So we will go and say goodbye on Thursday, it will be absolutely heartbreaking for all of us but my friends what on earth are they going to be going through. My friend (a Cancer survivor) and his wife didn't deserve this after all they have been through themselves in the past 2 years. I have no idea what they will be thinking or how they will be able to go from the funeral straight to the Hospital and see the other son straight afterwards. I remember apologising to him for not understanding what he was going through (or had gone through by then) with his cancer. I don't want to know what it feels like for him now. I'm not sure if I'd be strong enough to cope with it.
On Thursday we will say goodbye to my friend's son who died at birth. His brother survived but is in intensive care - how do you even start to come to terms with that sort of tragedy? We were only speaking last week about the excitement of the birth and all. I spoke briefly to my friend last night about the mixture of sadness and joy it is very difficult to come to terms with two events so closely linked that could possibly leave you with such bitter sweet thoughts. I said that I was finding difficulty in finding something suitable to send as whilst one son had died we also needed to be fighting the other little fella's corner whilst he battles too. Not easy is it?
So we will go and say goodbye on Thursday, it will be absolutely heartbreaking for all of us but my friends what on earth are they going to be going through. My friend (a Cancer survivor) and his wife didn't deserve this after all they have been through themselves in the past 2 years. I have no idea what they will be thinking or how they will be able to go from the funeral straight to the Hospital and see the other son straight afterwards. I remember apologising to him for not understanding what he was going through (or had gone through by then) with his cancer. I don't want to know what it feels like for him now. I'm not sure if I'd be strong enough to cope with it.
Friday, July 06, 2007
And then
When they've made you re-load all your software on again for the second time and you go and activate it - they won't let you - so you have to ring up and then they ask the stupid questions about what "other" PC you were loading it on and I was ever so good - I had to bite my tongue as I gently explained that I had spent 15 hours or so doing this and re-loading the software mainly due to the fact that their software screwed it all up in the first place and that there was every possibility that somewhere on my PC that the software actually was but I couldn't find it.
Anyway, Sharon in Mumbai managed to sort out the codes to reactivate the PC. All I have to do now is see if I can find what the PC did with some of my data files. I have most of them back....
Oh the fun of it all and this is meant to make a user's experience better? Could it get any worse?
Anyway, Sharon in Mumbai managed to sort out the codes to reactivate the PC. All I have to do now is see if I can find what the PC did with some of my data files. I have most of them back....
Oh the fun of it all and this is meant to make a user's experience better? Could it get any worse?
Utterly and abjectly p*ssed off
This re-loading has taken me all day and it keeps wanting old disks and new disks to upgrade and re-load and it can't find half the files it messed up the first time so I have had to re-load applications only for them to be over written half an hour later.
I never had this problem with upgrading from XP Home to XP Pro. To have wasted most of my day on this is just ridiculous
I never had this problem with upgrading from XP Home to XP Pro. To have wasted most of my day on this is just ridiculous
Computers and Software
Must be a real pain to anyone who doesn't know what to do with them. I have a new PC but it came with Vista Home and after a few weeks I realised that I was having problems with it because it doesn't have some of the functionality that I need.
So I dutifully upgraded this morning to Vista Business - alright!
No - not alright - so far I have spent all morning and some of the afternoon recovering the basic drivers and making the system work. Additionally I am going to have to completely re-load the office suites, the updated files and then get the network working (well done they disabled that and then asked why I couldn't connect to the Internet!!!!).
Now I, allegedly, know what I am doing with PCs and yet this morning, for a new OS written to be user friendly this was anything but - it never used to happen with XP so why now/ This has cost me a whole day (or it will do) and very probably the next few days too to get any information back to where it should be!
What a damn nuisance and another waste of time all down to someone not working out that you would upgrade from one to the other. Nightmare.
So I dutifully upgraded this morning to Vista Business - alright!
No - not alright - so far I have spent all morning and some of the afternoon recovering the basic drivers and making the system work. Additionally I am going to have to completely re-load the office suites, the updated files and then get the network working (well done they disabled that and then asked why I couldn't connect to the Internet!!!!).
Now I, allegedly, know what I am doing with PCs and yet this morning, for a new OS written to be user friendly this was anything but - it never used to happen with XP so why now/ This has cost me a whole day (or it will do) and very probably the next few days too to get any information back to where it should be!
What a damn nuisance and another waste of time all down to someone not working out that you would upgrade from one to the other. Nightmare.
Life, The Universe and Everything
Well it is Friday morning and although it isn't the 7th July yet, I remember this day as the one I went down to the Doctors. I have a early to mid morning appointment, it was a pleasant enough day so I walked. Little did I know then that I must have done that walk and back more in a year than I have for all the rest of the time I have lived here put together.
I got there really early I had over estimated how long it took to get down there and so I had a long time to kill. I was also very worried. Silly mistake next, I went and bought a pack of cigars and had a few before I went in to the Doctors.
I saw the other Doc, not the nice one I have now. The procedure I had to go through was explained although not the bit about being awake for it!
It was after I got home that it fully dawned on me what I probably had. Once you know better, you realise that it was pretty fortunate to get bladder cancer as they can do something about it if it caught early enough. I had no idea that it was that, some sort of Kidney failure problems or what. To say the next two weeks were the worst of my life is very possibly an understatement. An over active mind, a less than full appreciation of the medical condition, prognosis and treatment also doesn't help the brain to work out what is wrong, what to do, what to expect or to work out your chances.
I was certain that it was pretty much curtains. Lucky for me - I'm not a Doctor :-) A year on I'm still here and I'm OK.
I got there really early I had over estimated how long it took to get down there and so I had a long time to kill. I was also very worried. Silly mistake next, I went and bought a pack of cigars and had a few before I went in to the Doctors.
I saw the other Doc, not the nice one I have now. The procedure I had to go through was explained although not the bit about being awake for it!
It was after I got home that it fully dawned on me what I probably had. Once you know better, you realise that it was pretty fortunate to get bladder cancer as they can do something about it if it caught early enough. I had no idea that it was that, some sort of Kidney failure problems or what. To say the next two weeks were the worst of my life is very possibly an understatement. An over active mind, a less than full appreciation of the medical condition, prognosis and treatment also doesn't help the brain to work out what is wrong, what to do, what to expect or to work out your chances.
I was certain that it was pretty much curtains. Lucky for me - I'm not a Doctor :-) A year on I'm still here and I'm OK.
Thursday, July 05, 2007
Some people should
stick their brain into gear before opening their mouths or committing anything to print. Some dipstick wrote me a response to one of my forum messages and obviously hadn't read the thing first or understood what I was writing about.
I'm afraid I have just had to shoot the idiot down in flames. Nicely of course, he will probably think that I really was interested in his asinine response :-) I hope the remainder of the community will read into it, the utter contempt that it deserves.
I'm afraid I have just had to shoot the idiot down in flames. Nicely of course, he will probably think that I really was interested in his asinine response :-) I hope the remainder of the community will read into it, the utter contempt that it deserves.
I think I got away with that
Yes - no headache! I obviously wasn't trying hard enough. This morning is dragging though and I have a meeting to go to later today which will be good - I will enjoy that. After yesterday's excitement, today is a bit of an anti climax.
It was
Today a year ago I phoned my wife and said "make an appointment for me with the Doctor".
i walked across the bridge at Wetherby, went to a pub and then a shop and bought some cigars. I walked back, got changed and went to a restaurant, I drank water all night. Italy ( I think) were playing football. I was completely distracted and had to keep going to the loo and passing blood all the time.
About now I started to realise that things wouldn't be normal again and I started to believe this was serious. Just how serious I wouldn't know until late July.
i walked across the bridge at Wetherby, went to a pub and then a shop and bought some cigars. I walked back, got changed and went to a restaurant, I drank water all night. Italy ( I think) were playing football. I was completely distracted and had to keep going to the loo and passing blood all the time.
About now I started to realise that things wouldn't be normal again and I started to believe this was serious. Just how serious I wouldn't know until late July.
An Evening to Treasure
I cannot even begin to tell you how wonderful an evening I have just had. It is my 50th Birthday and I spoke to my wife and I chose to go to my Lodge meeting rather than go out. We have a series of our own celebrations lined up, I had my parents over last weekend and we have a big holiday planned and I really wanted to be with people that mean a lot to me.
So not mentioning names but the Almoner's of my Lodges were there - these are guys who look after people when they are sick or just need a pick me up. Let me tell you that these guys have been real rocks and have been quietly working away in the background to ensure that I have always had support. If things had gone "Pear Shaped" then they would have looked after my family.
So - tonight it wasn't only about ME. A number of the members made "welcome returns" to the Lodge after serious illness. We had a great evening - I was looked after like a lord - I had a fantastic time and I am so pleased that I decided to celebrate my birthday at the Lodge meeting as these people mean more to me than I think I could explain easily to you in this blog.
I was made to feel SO special tonight. I really didn't think I'd make this birthday and so the whole thing has been a celebration of survival, a festival of hope and a real feeling that I didn't go through this alone. everyone took a little chunk of my pain and made it theirs.
I may pretend to be shy about being the centre of attention - and normally I would move away from it, but tonight I really felt that I was special and that means more than you could ever believe. It also fires me up for the next part of the journey as well.
So a tribute to my Almoners and also to those who prayed for me - I find that very difficult to come to terms with but believe me - I will take any help from whatever angle it arrives from.
You don't know what you've got 'till it's gone.
Out there are a special breed - they are called Almoners - Thanks guys - NO Really.
So not mentioning names but the Almoner's of my Lodges were there - these are guys who look after people when they are sick or just need a pick me up. Let me tell you that these guys have been real rocks and have been quietly working away in the background to ensure that I have always had support. If things had gone "Pear Shaped" then they would have looked after my family.
So - tonight it wasn't only about ME. A number of the members made "welcome returns" to the Lodge after serious illness. We had a great evening - I was looked after like a lord - I had a fantastic time and I am so pleased that I decided to celebrate my birthday at the Lodge meeting as these people mean more to me than I think I could explain easily to you in this blog.
I was made to feel SO special tonight. I really didn't think I'd make this birthday and so the whole thing has been a celebration of survival, a festival of hope and a real feeling that I didn't go through this alone. everyone took a little chunk of my pain and made it theirs.
I may pretend to be shy about being the centre of attention - and normally I would move away from it, but tonight I really felt that I was special and that means more than you could ever believe. It also fires me up for the next part of the journey as well.
So a tribute to my Almoners and also to those who prayed for me - I find that very difficult to come to terms with but believe me - I will take any help from whatever angle it arrives from.
You don't know what you've got 'till it's gone.
Out there are a special breed - they are called Almoners - Thanks guys - NO Really.
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