That is the one thing that is taking up my grey cells these days. Uncertainty about whether or not the Insurance will pay out - my rep seems to be very nervous about it, perhaps it is me picking up the wrong vibes?
The uncertainty of the effectiveness of the treatment. In 4 weeks time I'll have finished the treatment and I'll have to wait 12 weeks (3 months) for the operation and biopsies, then perhaps 2 or 3 weeks for the pathology tests and then go and see what my future holds. It is obviously the quickest that it can be done in but, that means that from now, it is unlikely to be less than 5 months until I can really know whether this has worked, if it has, what happens next and when - then if it hasn't what we do next?
Of course I know what treatments are available and that there are combinations of these but, it is not my choice and the results will drive the next steps.
Then there is the other uncertainty side of things. I have to get back to work in the New Year. It will be particularly strange and there will be a lot to catch up with. I feel these days to be much slower than I was - my brain is not so sharp and it takes longer to do things. Will I be able to pick up long term projects or will I have to manage as if everything will be over by Easter?
I think that Cancer affects you physically (although I only feel ill in the background) and mentally because it makes you think about all the negatives first and the positives second and of course it affects those you love which in its turn affect you as well. Coming to terms with these is, of course, the difficult part of the journey.
You also have to face the facts that not everything will come out the way you want it. That will change your plans and perceptions and make you re-plan and move on.
I haven't come to terms with the fact that this is with me for the rest of my life, albeit that it may be that in 10 years time, all things working out well, I will only have to attend the Hospital once or twice a year! Mind you - do I fancy a Cystoscopy a year in the future? I may have to have one - but again it is too early to deal with that as it hasn't happened yet.
I don't think you can deal with the uncertainty in the way that you can deal with other day to day things you can plan. I reckon that as things progress the day to day existence that it is now will become week to week, month to month and year to year. When it starts to get to the point when I no longer need to blog each day, then the first step will have been taken. When the blog gets to being fortnightly or monthly you and I will know that acceptance has been reached and the new normality would have settled in.
That is enough of that sort of heavy stuff, I'll hurt my brain if I think any deeper than that for the rest of the day!
Friday, November 17, 2006
Seems OK this morning
Appears to be OK this morning, up during the night just the once, it seems to be a pattern these days. Slight an noticeable throb or slight sting right at the end of Urethra letting me know it is there. I hope that isn't around on Monday for the next treatment. Otherwise all is normal
Thursday, November 16, 2006
Side Effects Part Deux
Well since late afternoon I have been peeing for Team GB. At a guess I would suggest every 15 to 25 minutes. Slight stinging too. Perhaps a bit too much coffee after lunch - I made some for a guest but they didn't have it so I drunk perhaps 4 cups of strong filter coffee.
I'll make sure I don't do that tomorrow and see if there is any change.
I'll make sure I don't do that tomorrow and see if there is any change.
The Question I struggle with - How are you? No Really how are you?
It is difficult to describe to someone exactly how you feel.
How am I? I'm fine thank you. Well actually I'm not fine; neither am I well; feeling great; top of the world or any such thing but my automatic response would be to say I'm fine.
I find myself stuttering through that answer now with "I'm fine er, well, um, maybe, well no I'm not really" and off we go.
Of course saying you are well is the easiest to get things moving but hardly truthful if the next question is something along the lines of "do you fancy coming out to London for a festive beer?" where upon you have to make your excuses generally and decline and then why.
Of course, the quandary is, how do you be truthful without sounding as if you want to get the sympathy vote - there is no easy answer to this one - if there is I'll post it.
How am I? I'm fine thank you. Well actually I'm not fine; neither am I well; feeling great; top of the world or any such thing but my automatic response would be to say I'm fine.
I find myself stuttering through that answer now with "I'm fine er, well, um, maybe, well no I'm not really" and off we go.
Of course saying you are well is the easiest to get things moving but hardly truthful if the next question is something along the lines of "do you fancy coming out to London for a festive beer?" where upon you have to make your excuses generally and decline and then why.
Of course, the quandary is, how do you be truthful without sounding as if you want to get the sympathy vote - there is no easy answer to this one - if there is I'll post it.
Still feel it
I can still feel the effects of the treatment even today - urinating you can feel as if there are lots of very small bumps in your Urethra. I guess this is why I was warned that each catheter gets a little more difficult. Thank goodness there are only 4 left then :-(
Despite the side effects, I feel well and quite good generally. The morbid thoughts are less frequent but they still appear when you least expect them as do the mood swings. Fortunately, in my case these are all manageable and over very quickly.
I wasn't sure what to make of the fact that the side effects are cumulative. I hope that means that they last a little longer rather than get any more pronounced than they were earlier in the week. I'll find out next week I suppose.
Despite the side effects, I feel well and quite good generally. The morbid thoughts are less frequent but they still appear when you least expect them as do the mood swings. Fortunately, in my case these are all manageable and over very quickly.
I wasn't sure what to make of the fact that the side effects are cumulative. I hope that means that they last a little longer rather than get any more pronounced than they were earlier in the week. I'll find out next week I suppose.
Wednesday, November 15, 2006
Well that's alright then
I just spoke to the Urology Nurse about the side effects. Yes, that is what you should expect - crikey. If it goes on longer than it did then you need to worry - they reckon no more than 24 hours. At present then, the Ibuprofen and paracetamol were a good move and the treatment is designed to remove the lining of your bladder!
I think it certainly did that for me. I'll probably not try and get up and go back to work after the turning bit next time.
I think it certainly did that for me. I'll probably not try and get up and go back to work after the turning bit next time.
Peeing for England or Team GB
I reckon that I'm up for that these days if they include it in the Olympics or Commonwealth Games:
Winter Olympics: Sign your name in the snow? Extra points for crossing all "T"s and dotting all "i"s. People with long names given higher scores. People with Balkan names get extra points with all the extra dots, acutes etc.
In the main Summer games I suppose you could emulate most track and field events:
Speed - 100 metres. Make contestants drink until bursting point, line them up with just one toilet at the end of the track and set them off. False starts to be indicated by a mop?
Pole Vault - oh no - don't even go there.
Marathon, see who can take the longest to urinate continually.
The Relay, shortest time between several visits wins.
Highest, best of three using the high jump apparatus.
Longest distance, best of three attempts. Foul called if dribbling on the Plasticine.
Triple jump. Contestants filled to bursting point and the one toilet in the arena has engaged written on the lock!
Javelin. Best not to even think about that one.
Whilst many of these appear to be similar to games played on the way home from a particularly lively night down the rugby club, it would allow me to do something with my new found skills.
Strange what you think about at 3 in the morning isn't it?
Winter Olympics: Sign your name in the snow? Extra points for crossing all "T"s and dotting all "i"s. People with long names given higher scores. People with Balkan names get extra points with all the extra dots, acutes etc.
In the main Summer games I suppose you could emulate most track and field events:
Speed - 100 metres. Make contestants drink until bursting point, line them up with just one toilet at the end of the track and set them off. False starts to be indicated by a mop?
Pole Vault - oh no - don't even go there.
Marathon, see who can take the longest to urinate continually.
The Relay, shortest time between several visits wins.
Highest, best of three using the high jump apparatus.
Longest distance, best of three attempts. Foul called if dribbling on the Plasticine.
Triple jump. Contestants filled to bursting point and the one toilet in the arena has engaged written on the lock!
Javelin. Best not to even think about that one.
Whilst many of these appear to be similar to games played on the way home from a particularly lively night down the rugby club, it would allow me to do something with my new found skills.
Strange what you think about at 3 in the morning isn't it?
Tuesday, November 14, 2006
End of the day
Things have gradually got better as I've gone on today and I'm just readying myself for bed. I have probably drunk 5 pints or more of water today and that has been keeping me visiting the toilet. However that is meant to help flush everything through and help things along.
I am hoping that tomorrow I'll be able to get on and do some work as today was a wash out.
Anyway, greatly improved on this time yesterday.
I am hoping that tomorrow I'll be able to get on and do some work as today was a wash out.
Anyway, greatly improved on this time yesterday.
My Day for upsetting people
A friend of mine called today and was one of the ones I haven't told and so went through the "are you sitting down" sort of preamble before explaining where I am and so on.
Anyway, it was funny because I did get an ear hole bashing for "trivialising my condition". Well that told me I suppose :-) He felt that I wasn't paying enough attention to getting well after the latest episodes and that rushing to get back to normality were secondary to getting well in the first place.
I hope that tomorrow I don't upset too many people - I won't have any friends left at this rate :-)
Anyway, it was funny because I did get an ear hole bashing for "trivialising my condition". Well that told me I suppose :-) He felt that I wasn't paying enough attention to getting well after the latest episodes and that rushing to get back to normality were secondary to getting well in the first place.
I hope that tomorrow I don't upset too many people - I won't have any friends left at this rate :-)
Now I've Upset my Brother
Bless him, he asked me how I was and I told him and he sounded very upset. I forget that people who care about you get upset when you tell them how you feel and what is going on.
I hadn't realised that I might hurt anyone by saying how it actually is. Anyway, I hope that I managed to cheer him up after I caught the fact I'd upset him.
I will have to be careful about that. I try and be matter of fact about what is happening and try (through gritted teeth sometimes) to portray the upsides and the funny side of it. Sometimes being sincere has its downsides obviously.
My family are very good considering the havoc that I have wrought on them with this.
I hadn't realised that I might hurt anyone by saying how it actually is. Anyway, I hope that I managed to cheer him up after I caught the fact I'd upset him.
I will have to be careful about that. I try and be matter of fact about what is happening and try (through gritted teeth sometimes) to portray the upsides and the funny side of it. Sometimes being sincere has its downsides obviously.
My family are very good considering the havoc that I have wrought on them with this.
Ouch, Ouch and Double Ouch
That was NOT a good evening.
I got worse and worse after my last post and had to keep dashing to the toilet. Passing blood and bits is fair enough but stinging whilst you are doing so down the length of your penis, well - I don't recommend that to anyone. Gee does it ever sting - enough to swear in many different languages too.
I grabbed some Paracetamol and then followed that up with some Ibuprofen and went to bed. Now for the one they DON'T tell you in any of the books or advice letters. Be prepared to leak quite a bit. Luckily I'd thought of that and spread out some cloths like I did after the operations and I'd suggest you get ready for that. You can't tell you are doing it because you are throbbing or stinging so bad! Definitely one to be aware of.
I was bracing myself for the side effects they did publish - like "Flu like symptoms", "slight bleeding and stinging" - I feel like I've been hit by a truck - no wonder people give up this treatment if it does this to you. As for the Flu like symptoms, they were possibly overshadowed by the other symptoms.
I'm feeling a lot better this morning and able to sit down - yesterday I could stand or lie down only. I'm still going to take myself back off to bed in a minute as I still need to lie down and things are still stinging but all is much more controllable now.
The upside is that this treatment must be working. The downside is the side effects of course. The thing to look forward to is that going through this may get all of the cancer out or at least into a manageable state.
I'm sure that all the blood and bits coming out was the body throwing out the Cancerous bits - lets hope so...
More later - check with your urology nurse or doctor about the side effects - I understand some people get none at all!
I got worse and worse after my last post and had to keep dashing to the toilet. Passing blood and bits is fair enough but stinging whilst you are doing so down the length of your penis, well - I don't recommend that to anyone. Gee does it ever sting - enough to swear in many different languages too.
I grabbed some Paracetamol and then followed that up with some Ibuprofen and went to bed. Now for the one they DON'T tell you in any of the books or advice letters. Be prepared to leak quite a bit. Luckily I'd thought of that and spread out some cloths like I did after the operations and I'd suggest you get ready for that. You can't tell you are doing it because you are throbbing or stinging so bad! Definitely one to be aware of.
I was bracing myself for the side effects they did publish - like "Flu like symptoms", "slight bleeding and stinging" - I feel like I've been hit by a truck - no wonder people give up this treatment if it does this to you. As for the Flu like symptoms, they were possibly overshadowed by the other symptoms.
I'm feeling a lot better this morning and able to sit down - yesterday I could stand or lie down only. I'm still going to take myself back off to bed in a minute as I still need to lie down and things are still stinging but all is much more controllable now.
The upside is that this treatment must be working. The downside is the side effects of course. The thing to look forward to is that going through this may get all of the cancer out or at least into a manageable state.
I'm sure that all the blood and bits coming out was the body throwing out the Cancerous bits - lets hope so...
More later - check with your urology nurse or doctor about the side effects - I understand some people get none at all!
Monday, November 13, 2006
Phew - Not quite what I expected
Well - I'm still rushing in and out of the toilet and still stings and still bloody. I find standing or lying down are good but sitting (unless sitting on the loo) seems to put more pressure on!
I'll see what I am like in the morning as I'm going to have to take myself off to bed.
I'll see what I am like in the morning as I'm going to have to take myself off to bed.
Getting Worse
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
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
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.
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