Yep, Lots of blood and bits now and stings like hell. Going approximately every 15 minutes to the toilet and still need the bleach precautions for another hour or so.
Got to keep telling yourself this is worth going through - not nice seeing all this blood again though for sure - reminds me of early days
Monday, November 13, 2006
Ouch
MMmm, here we go, blood in urine and stinging when passing it too. Also a real stinging right at the end of my Urethra - ouch :-)
It is bearable but uncomfortable. Plenty to drink and I've just grabbed a Paracetamol to see if that helps.
It is a good sign of course but - they say after 4 hours it kicks in and bang on time if not 15 minutes early!
It is bearable but uncomfortable. Plenty to drink and I've just grabbed a Paracetamol to see if that helps.
It is a good sign of course but - they say after 4 hours it kicks in and bang on time if not 15 minutes early!
Forgot to share this - from the X-Ray
I said in an earlier post I would share this but forgot so, sorry, and here it is a bit delayed - I bet you are glad you didn't hold your breath though......
When I was shown the X-Ray there was something unusual about it.
Instead of having one pipe between my Kidneys and Bladder on one Kidney there are two pipes.
Now this does not surprise my friends one bit - having been out drinking with me they can tell you that I can be predisposed to drink like a fish and I imagine that this extra pipe was grown with a view to cope with just this sort of eventually.
Asked whether this was Tom Jones Syndrome to have three tubes not two - the Consultant said it's not unusual - well I had to get that old joke in somewhere didn't I!
When I was shown the X-Ray there was something unusual about it.
Instead of having one pipe between my Kidneys and Bladder on one Kidney there are two pipes.
Now this does not surprise my friends one bit - having been out drinking with me they can tell you that I can be predisposed to drink like a fish and I imagine that this extra pipe was grown with a view to cope with just this sort of eventually.
Asked whether this was Tom Jones Syndrome to have three tubes not two - the Consultant said it's not unusual - well I had to get that old joke in somewhere didn't I!
Curious
One of my friends made me laugh on Saturday.
"who" he asked "initially thought about using something like BCG for Bladder Cancer?" If you think about it, it is pretty strange that anyone would have come up with that sort of lateral thinking and then how about explaining it to the first person you gave it to, or working out how many doses to give and so on. It really is amazing that someone thought of it, developed it and makes it as effective as it is today.
"I'm just going to stick this up your Willy to make you better???"
I remember at school having the most violent reaction to the BCG test because I had already had the vaccine when I was a kid. Perhaps they realised that this reaction was just what they needed.
Anyway - I can say for certain that it is sure working this time - I can feel it!
"who" he asked "initially thought about using something like BCG for Bladder Cancer?" If you think about it, it is pretty strange that anyone would have come up with that sort of lateral thinking and then how about explaining it to the first person you gave it to, or working out how many doses to give and so on. It really is amazing that someone thought of it, developed it and makes it as effective as it is today.
"I'm just going to stick this up your Willy to make you better???"
I remember at school having the most violent reaction to the BCG test because I had already had the vaccine when I was a kid. Perhaps they realised that this reaction was just what they needed.
Anyway - I can say for certain that it is sure working this time - I can feel it!
The 2nd Treatment
Well today it was slightly different. It was a little more uncomfortable with the catheter this time. I believe that is probably because the treatment irritates the hell out of your urethra and that is what gave me the slight discomfort. However it isn't what I'd call painful as such.
I have decided to see if I can take in a stress ball next time. You have to sort of twiddle your toes to take your mind off what they are doing - I keep my eyes closed anyway. The ball would enable me to do something with my hands as well as my toes :-)
I saw the equipment they use today - the catheter looks long enough to go through your whole body and the syringe well, what can I say - if it had a needle on it I would have feinted! It is absolutely massive, it has the BCG small bottle attached to it and some other solution inside. Than goodness you don't see all that lot go in!
Anyway, I have done my 15 minutes a side regime and I am waiting for another 20 or so minutes before I can get rid of this out of my system.
I think that this week I am going to drink a lot more water and liquids to see if I can cut down the irritation for next week's appointment.
That is it for now. I can definitely feel something this week so stay tuned for ongoing reports.
I have decided to see if I can take in a stress ball next time. You have to sort of twiddle your toes to take your mind off what they are doing - I keep my eyes closed anyway. The ball would enable me to do something with my hands as well as my toes :-)
I saw the equipment they use today - the catheter looks long enough to go through your whole body and the syringe well, what can I say - if it had a needle on it I would have feinted! It is absolutely massive, it has the BCG small bottle attached to it and some other solution inside. Than goodness you don't see all that lot go in!
Anyway, I have done my 15 minutes a side regime and I am waiting for another 20 or so minutes before I can get rid of this out of my system.
I think that this week I am going to drink a lot more water and liquids to see if I can cut down the irritation for next week's appointment.
That is it for now. I can definitely feel something this week so stay tuned for ongoing reports.
Setting Goals and Targets
I realised that it is a way to get back under some control and to help that you do what I do - see blog below:
6 treatments
At treatment one you are a 1/6th of the way through
At treatment two you are 1/3rd of the way through
at treatment three you are 1/2 the Way through
at treatment four you are 2/3rds of the way through
at treatment five you are 5/6ths of the way through
At treatment 6 you are finished.
It sounds obvious but this time next week I am half way through which means that I'm on the home stretch.
6 treatments
At treatment one you are a 1/6th of the way through
At treatment two you are 1/3rd of the way through
at treatment three you are 1/2 the Way through
at treatment four you are 2/3rds of the way through
at treatment five you are 5/6ths of the way through
At treatment 6 you are finished.
It sounds obvious but this time next week I am half way through which means that I'm on the home stretch.
Sunday, November 12, 2006
2nd Treatment Looming large
Tomorrow is treatment number 2 and I feel OK about it. I have the very slightest soreness at the end of my urethra but other than that and the very very slight feelings of aching all is OK.
The appointment is a little earlier and I am hoping to again get seen quite quickly and to get back home and doing the turning and precautionary stuff I have to do. After this treatment I'll be a third of the way through and I hope a third of the way further along the way to getting all of this under control.
The appointment is a little earlier and I am hoping to again get seen quite quickly and to get back home and doing the turning and precautionary stuff I have to do. After this treatment I'll be a third of the way through and I hope a third of the way further along the way to getting all of this under control.
What it looks like
CLICK Image To enlarge.
Here is a diagram of the various stages of Bladder Cancer. I started off with a T1 which the operations got back down to CIS - Carcinoma in Situ. The Tumour was a lot larger than the ones shown and was low down.
Saturday, November 11, 2006
The Flying Catheter
I realised this evening that I had not posted this little incident.
Operation 1 they strapped a bag to my leg after the operation (next morning) and I was able to move around quite freely. On Operation 2 I was still attached to a bag, attached to a metal frame that either hung on the bed or stood freely next to you.
These bags are to collect urine and are connected via a rather large pipe (in the circumstances) which is attached via a catheter. That Catheter is (of course) inserted up your urethra inside your Penis and there is a balloon on the end that has been pumped up to keep it in place.
Catheters are OK and you get used to them being there but you can pull them and that can clear our your tear ducts for a while :-)
So - after Operation 2 the volunteer ladies arrive with the mobile shop and it has newspapers and all that on there. I wanted a newspaper. I got up, kicked the urine bag which flew across the room toward the ladies and then (like the cartoons) realised what the pipe was connected to. The bag and frame came to a halt as the slack of the pipe was taken up and the resultant tear jerking scene I will leave you to consider and laugh or cry about as you feel fit. The ladies were most concerned about me. I manged with all my dignity ( a bit difficult in a surgical gown and pipe hanging from your Penis) to pick up the frame and bag, stare straight ahead choking back the tears and gasps of breath whilst asking, in my best BBC voice for a copy of the Telegraph!
You cannot see the actions I can do to this story but believe me - it is really funny now - at the time - well .......
Operation 1 they strapped a bag to my leg after the operation (next morning) and I was able to move around quite freely. On Operation 2 I was still attached to a bag, attached to a metal frame that either hung on the bed or stood freely next to you.
These bags are to collect urine and are connected via a rather large pipe (in the circumstances) which is attached via a catheter. That Catheter is (of course) inserted up your urethra inside your Penis and there is a balloon on the end that has been pumped up to keep it in place.
Catheters are OK and you get used to them being there but you can pull them and that can clear our your tear ducts for a while :-)
So - after Operation 2 the volunteer ladies arrive with the mobile shop and it has newspapers and all that on there. I wanted a newspaper. I got up, kicked the urine bag which flew across the room toward the ladies and then (like the cartoons) realised what the pipe was connected to. The bag and frame came to a halt as the slack of the pipe was taken up and the resultant tear jerking scene I will leave you to consider and laugh or cry about as you feel fit. The ladies were most concerned about me. I manged with all my dignity ( a bit difficult in a surgical gown and pipe hanging from your Penis) to pick up the frame and bag, stare straight ahead choking back the tears and gasps of breath whilst asking, in my best BBC voice for a copy of the Telegraph!
You cannot see the actions I can do to this story but believe me - it is really funny now - at the time - well .......
What a GREAT evening
I don't get out much at the moment (poor old sod) :-)
No I don't - really so it was great to be out this afternoon with my mates and friends and to have a really good laugh and joke. It was a real tonic and I had a great time and bless them all, they were all concerned about me and how I was doing. I feel a bit of a fraud at times as I don't look ill and I certainly only feel a little abnormal.
Anyway, cheered up and recharged - I really hope that we can all get together before Christmas even if just for a few beers as it will really lift my spirits.
No I don't - really so it was great to be out this afternoon with my mates and friends and to have a really good laugh and joke. It was a real tonic and I had a great time and bless them all, they were all concerned about me and how I was doing. I feel a bit of a fraud at times as I don't look ill and I certainly only feel a little abnormal.
Anyway, cheered up and recharged - I really hope that we can all get together before Christmas even if just for a few beers as it will really lift my spirits.
Always With You
I think this takes some getting used to? Unless they cut out the Cancer and it is no longer there, you always have to be checked. So there is a point at which you need to come to terms with the fact that this is with you for the rest of your natural. I still haven't got there yet and whilst I know about it, either I'm not comfortable with it or cannot comprehend what it means. Perhaps I am over complicating things too much as well.
I think I said it before about with a nasty cold or some other operation, who have it and then you go back to "normal" and with this you don't really. No matter what you do it is always there and it kind of stops you doing what you want to do and stops you planning long term and at the moment short term too.
I cannot book tings too far in advance in case I have to cancel them. I don't know how I'll feel next week so I don't make appointments too far in advance and so on. I know I have to have an Operation in January but exactly when will that be and how long will I be affected for (especially given the last surprise one)? All these things reinforce that this disease is different. At some point in time I need to come to terms with it and when I do that master it and not have it master me. Not sure HOW I'll do that yet :-) Stay tuned!
I think I said it before about with a nasty cold or some other operation, who have it and then you go back to "normal" and with this you don't really. No matter what you do it is always there and it kind of stops you doing what you want to do and stops you planning long term and at the moment short term too.
I cannot book tings too far in advance in case I have to cancel them. I don't know how I'll feel next week so I don't make appointments too far in advance and so on. I know I have to have an Operation in January but exactly when will that be and how long will I be affected for (especially given the last surprise one)? All these things reinforce that this disease is different. At some point in time I need to come to terms with it and when I do that master it and not have it master me. Not sure HOW I'll do that yet :-) Stay tuned!
Friday, November 10, 2006
An Expensive Disease
I hadn't realised that bladder cancer is one of the most expensive diseases to treat because of all the follow up work that has to be done and regular cystoscopies :-(
I can see why given the amount of time that you have to be seen and examined and the powerful equipment that they use. I also considered how many people were involved in my operation. If you have ever had a stay in Hospital just start to count all the people you met and then consider all the people that make that happen and all the technicians and everything else behind the scenes, all the canteen staff, cleaning staff, IT people, theatre nurses - you don't see them and so on?
The treatment and regular follow ups alone must cost a fortune and if this continues for the rest of your life - it can soon add up
I can see why given the amount of time that you have to be seen and examined and the powerful equipment that they use. I also considered how many people were involved in my operation. If you have ever had a stay in Hospital just start to count all the people you met and then consider all the people that make that happen and all the technicians and everything else behind the scenes, all the canteen staff, cleaning staff, IT people, theatre nurses - you don't see them and so on?
The treatment and regular follow ups alone must cost a fortune and if this continues for the rest of your life - it can soon add up
Turning the Corner
I haven't got there yet. Some people I know are really relaxed with their diagnosis, the disease, what it means and are getting on with their life. I haven't got to that level of comfort or thought yet.
There are a few things outstanding including fully coming to terms with the disease, the treatment and the outlook. The Operations were successful, things have been caught early but CIS is still aggressive and needs regular management. Additionally, I have been off work (albeit working from home) for some time now and I am advised to stay local. It means that I need to plan my life differently. Anyone who knows me also knows that I am a planner by nature. Things have to be done in a certain order and project management is what I do!
There is uncertainty over my Critical Illness Insurance which I really didn't need at this time, albeit I hadn't even realised I could claim. Given the way Insurance Companies are stated in the press to find all reasons not to pay this adds a level of stress that I wasn't expecting to have to deal with.
I think once I have this treatment out of the way, the insurance settled one way or the other and the next steps known. I can then try and plan out the way ahead. I will be taking an extended Christmas break this year and that I hope will allow me time to reflect, time with the family which is important and get some idea of what I can do in the New Year. Of course that is tempered with the fact that I know I am due back in Hospital in January for a few days!
There are a few things outstanding including fully coming to terms with the disease, the treatment and the outlook. The Operations were successful, things have been caught early but CIS is still aggressive and needs regular management. Additionally, I have been off work (albeit working from home) for some time now and I am advised to stay local. It means that I need to plan my life differently. Anyone who knows me also knows that I am a planner by nature. Things have to be done in a certain order and project management is what I do!
There is uncertainty over my Critical Illness Insurance which I really didn't need at this time, albeit I hadn't even realised I could claim. Given the way Insurance Companies are stated in the press to find all reasons not to pay this adds a level of stress that I wasn't expecting to have to deal with.
I think once I have this treatment out of the way, the insurance settled one way or the other and the next steps known. I can then try and plan out the way ahead. I will be taking an extended Christmas break this year and that I hope will allow me time to reflect, time with the family which is important and get some idea of what I can do in the New Year. Of course that is tempered with the fact that I know I am due back in Hospital in January for a few days!
I don't sleep well still
I was up again last night at about 2. It had taken me hours to get to sleep as well.
I think I said it earlier, the brain goes off on a journey about something every night. Yesterday I had been out with a few friends and one was telling the other that it was serious and not everyone we knew appreciated that I (he was referring to me) could die from this.
He is right I suppose and whilst it is an aggressive disease, it is in its early treatable stages and it is still treatable should this fail and more radical surgery is needed. However, 4000 people a year in the UK will die of this so I suppose I was a bit more sensitive to that last night.
It can be other reasons that keep you awake too. Will my employer still continue their excellent attitude to my problem? Why can't I do what I used to do? Will I be able to get back to some level of normality next year?
I can still hardly believe that it is less than 4 months ago that I was diagnosed. So much has happened to me in that short space of time. Also everything revolves around this at the moment so it is not surprising that my business, family and social lives all revolve around whether I have appointments, how I'll feel etc. It is a big problem as you cannot make long term plans. I know that I will be in Hospital in January 2007 and probably the end of the month. Given what happened last time, do I cancel the appointments that I have for 2 or perhaps 3 weeks either side of that? Again, all reasons to lie down and then to start to think of the consequences, the future, the past (perhaps I'll look at that later) and to churn over the day's goings on.
Enough, I'll not be able to sleep if I think of this lot :-)
I think I said it earlier, the brain goes off on a journey about something every night. Yesterday I had been out with a few friends and one was telling the other that it was serious and not everyone we knew appreciated that I (he was referring to me) could die from this.
He is right I suppose and whilst it is an aggressive disease, it is in its early treatable stages and it is still treatable should this fail and more radical surgery is needed. However, 4000 people a year in the UK will die of this so I suppose I was a bit more sensitive to that last night.
It can be other reasons that keep you awake too. Will my employer still continue their excellent attitude to my problem? Why can't I do what I used to do? Will I be able to get back to some level of normality next year?
I can still hardly believe that it is less than 4 months ago that I was diagnosed. So much has happened to me in that short space of time. Also everything revolves around this at the moment so it is not surprising that my business, family and social lives all revolve around whether I have appointments, how I'll feel etc. It is a big problem as you cannot make long term plans. I know that I will be in Hospital in January 2007 and probably the end of the month. Given what happened last time, do I cancel the appointments that I have for 2 or perhaps 3 weeks either side of that? Again, all reasons to lie down and then to start to think of the consequences, the future, the past (perhaps I'll look at that later) and to churn over the day's goings on.
Enough, I'll not be able to sleep if I think of this lot :-)
Wednesday, November 08, 2006
Remains of the day
Well - I am afraid it is all boring today. The good news is that I really thrashed through some work today and got on and completed stuff which I haven't done for ages. That cheered me up no end!
I went out to meet some Friends this evening and apart from having to go to the loo a few more times than normal I had a great evening. Only the very slightest problems with minor aches. Again, really chuffed about that.
All is OK - I wonder if I will be so upbeat next week?
I went out to meet some Friends this evening and apart from having to go to the loo a few more times than normal I had a great evening. Only the very slightest problems with minor aches. Again, really chuffed about that.
All is OK - I wonder if I will be so upbeat next week?
All OK this morning
Apart from sleeping in, I'm still not sleeping that well at night. I feel OK today, a little sore but like so much of this it is uncomfortable and in the background rather than painful. I can feel something going on in the bladder area and that is it. No aches and pains to day at all. If anything there is a very slight dull ache in the bottom of my ribs.
So - nothing to report today really.
So - nothing to report today really.
Tuesday, November 07, 2006
A Little More Side Effects
Yes a little more has kicked in this evening. Slight aching around the ribs and a feeling of soreness around the middle. These aren't strong enough to need medication, it is more like a dull ache and I expect that this will change over time and with subsequent treatment.
I have a very slight headache and my arms and legs have slight aches at the joints.
I am taking this as a good sign that the therapy is kicking in already.
I have a very slight headache and my arms and legs have slight aches at the joints.
I am taking this as a good sign that the therapy is kicking in already.
Side Effects later today
Funny as the day goes on I've had the very slightest Flu type symptoms without the full thing. a few aches but dull and insignificant in my joints and a few chills too.
I am also feeling quite tired this afternoon but that could be work doing that.
I am also feeling quite tired this afternoon but that could be work doing that.
Morning Update
Well I am pleased to say that I feel fine this morning. I know that something is going on with my body but I couldn't quantify it or tell you how it feels at all. Very strange. Perhaps a warm feeling around my middle.
I got up once during the night which is not surprising considering the amount of water I drank yesterday. Other than that I feel fine this morning and I am awake and up and about earlier than I normally am too.
I got up once during the night which is not surprising considering the amount of water I drank yesterday. Other than that I feel fine this morning and I am awake and up and about earlier than I normally am too.
Monday, November 06, 2006
Recovery Operation 2
As I mentioned in Scar Wars 2 - the operation wasn't really meant to be that but when I left the Hospital I didn't feel as bad as I thought I should have done. The first few days were pretty similar with the blood and ooze and all that though.
But this time, I didn't feel half so knocked out and after a few days and the weekend I started to get back and involved in work occasionally and kept up the regime of drinking plenty of water and so on. The problem this time is more one of aches and pains, far more so than last time where a small movement would start you off bleeding again, this time that didn't always happen but I actually felt (and still do) my sides aching so that warned me not to overdo it.
I questioned my Consultant and the word is that different people react different ways and there wasn't a problem with this. The one major difference with the second operation was that they had been able to get a full look at the bladder and so had pulled me about a lot more than the first time.
This time I found driving very difficult and also my memory (both short and long term) and ability to string together coherent sentences was seriously curtailed. Other than that, the second recuperation went really well, I hardly sat down in front of the TV at all and spent more time trying to do work and picking up on things I should have done over the past couple of months.
There is not a lot more to say other than that you fall into a routine with these and you learn from the first one what to expect and adjust as you go on. Good luck to you in your recovery. Remember it is also part of the healing process, don't think you can "leap tall buildings" a few days after you are released from Hospital - it just won't happen.
But this time, I didn't feel half so knocked out and after a few days and the weekend I started to get back and involved in work occasionally and kept up the regime of drinking plenty of water and so on. The problem this time is more one of aches and pains, far more so than last time where a small movement would start you off bleeding again, this time that didn't always happen but I actually felt (and still do) my sides aching so that warned me not to overdo it.
I questioned my Consultant and the word is that different people react different ways and there wasn't a problem with this. The one major difference with the second operation was that they had been able to get a full look at the bladder and so had pulled me about a lot more than the first time.
This time I found driving very difficult and also my memory (both short and long term) and ability to string together coherent sentences was seriously curtailed. Other than that, the second recuperation went really well, I hardly sat down in front of the TV at all and spent more time trying to do work and picking up on things I should have done over the past couple of months.
There is not a lot more to say other than that you fall into a routine with these and you learn from the first one what to expect and adjust as you go on. Good luck to you in your recovery. Remember it is also part of the healing process, don't think you can "leap tall buildings" a few days after you are released from Hospital - it just won't happen.
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