Having always been someone who does things and is out and about and worked (and played) really hard the past 30 months and the last 6 weeks or so really wears thin. I'm still here today, sat at my desk with my ear buzzing and hissing away. I can hear out of it but also have all the background noises to contend with as well.
I'm in that in between stage of being ill. Not quite well enough to return - as I know I'll just end up back here again. I can actually feel that I'm not up for doing more than a few hours work at a time, I do feel weak and I do feel tired.
I've got to give it time to get back to normal (heads them off at the pass by also stating that there is no way I'd ever be normal!!!). Again, it is one of those things that you have to accept. It reminds me of my Father who, a couple of years ago, had a "funny turn" and quite unlike him, we got him to a Doctor, to undertake a series of tests and they shoved a needle and got blood out of him (I was amazed he hates these places more than I do). So after all the tests and all the checks he goes to the GP who informs him that for a man of his age he is fine, Heart OK, BP OK, Cholesterol OK and so on. It is a mystery why he had the "funny turn". Then my Dad tells the GP and my Mum who is sitting beside him that it might have been lifting the 1CWT bag of sand out of the back of the car :-) . The GP then explained calmly to my Dad that he was 73 years old for goodness sake. Dad said he still felt as if he were 30... I still feel that too. There's no way I'm 51 - but I am :-(
Perhaps I'm really not admitting to being older than I think I am, I'm no longer indestructible, no longer as fit and healthy as I used to be and given the length and severity of this cold, no where near as recovered as I felt I was. I suppose I also have to admit that the BC and the treatments have taken it out of me. I suppose thinking back on those Post Cancer Fatigue days might also give me a clue about being run down. It would be churlish to think that having - what - 24 treatments and close to 6 Operations wouldn't have managed to take their toll somehow on me.
It goes back to your way of thinking that the only person who doesn't think that Bladder Cancer is a pretty serious thing to have is ME. If the words are "fighting your cancer" then that is what I've been doing but I've not felt myself getting weaker - I felt that I was getting stronger - this series of colds obviously shows different.
The Frustration is pretty obvious and the way out of it is just hard slog and letting time take its course. I can't see me shaking the cold off for a few more days and I can't see me being fully recovered for quite a while. Just as I am about to recover I'm sure that I'll end up on BCG treatment - that's bound to happen.
Oh well, life and time march on and I ought to attempt to get things done.. It is the last day of my antibiotics for my ear problems. It appears to have worked well enough that I can hear - but I can't hear music and listen to the TV properly as I still have this sounds like a robot hearing. I'll give it a few days more and if it isn't gone I'll have to go back to the Doctors and get something else. The trouble and complication being that BCG and certain antibiotics don't mix so I have to be careful on that front. Also, you shouldn't have a cold when you have the BCGs - this is because the side effects can give Flu like symptoms and you need to be aware of them. If you have already got something like that you could miss anything going wrong.
I see that this is going to - take as long as it takes and I'm just going to have to resign myself to it taking as long as it takes. Not easy for me but I know it is what I should do. It's just frustrating that's all.
Tuesday, January 27, 2009
Monday, January 26, 2009
Monday Evening
I went out on Escort duty tonight and MRs. F. - isn't she great - drove me there and picked me up so I wouldn't have to drive my "indulgence". In fact I haven't driven my motor for about 8 weeks or so which is a bit sad as I bought it so I could compensate for getting BC. Piccies below. 
My Indulgence. I bought this between the first and second TURBT and the only regret I really have is that it isn't an automatic as I do notice it in traffic when I have to keep pushing the clutch in especially if I have recently had BCG or an Op. Other than that though, it goes like stink and is probably the 2nd best car I've had. The best was a 2000 GSi 4x4 Vauxhall Cavalier. Lord alone knows how I never lost my licence driving that, it was so fast, held the road as if on rails but more than that - you could never tell how fast you were going until the anti-matter reactor started nudging the red line. The Cat is just effortless and cruises away and I haven't been in a situation yet where it hasn't had the ability to stop, steer or accelerate to do what I wanted.
Anyway, I digress - much as I like driving the cat - I was saying that Mrs. F. Dropped me off and I had a lovely time. I won a litre of Scotch in the raffle - always useful for medicinal purposes only you understand and the company was very pleasant. The food was great, Smoked Mackerel, Roast Beef and all the trimmings (plus seconds), Jam Roly Poly and Custard (which I missed I have to say) and then a cheese board with Stilton, Brie and Farmhouse Cheddar. Mmm - great. As always happens on these sorts of occasions - yesterday Mrs F happened to cook Roast Beef too :-)
Before I went I checked whether or not I could have a beer with the tablets I am taking and, joy of joys, I could have a "moderate" amount of alcohol. So I have had a few pints of beer and a couple of glasses of red wine too with the meal and all in all, I feel great apart from one thing; my hearing is shocking. I thought it was OK and up to going out but in a room full of people I was having real difficulty due to background chatter and noise. On a one-to-one basis it was fine. Later on the deafness returned even more but even so - I have to tell you it was great to be out and about again.
I realise that I am not ready for a whole day out but perhaps a day here or there might be OK. I'm not sure about going up to town in the next few days but I might try later on in the week and see how I get on, even if for half a day. It will be so good to see my work mates again and I am missing them more than I dared thought I would.
My Indulgence. I bought this between the first and second TURBT and the only regret I really have is that it isn't an automatic as I do notice it in traffic when I have to keep pushing the clutch in especially if I have recently had BCG or an Op. Other than that though, it goes like stink and is probably the 2nd best car I've had. The best was a 2000 GSi 4x4 Vauxhall Cavalier. Lord alone knows how I never lost my licence driving that, it was so fast, held the road as if on rails but more than that - you could never tell how fast you were going until the anti-matter reactor started nudging the red line. The Cat is just effortless and cruises away and I haven't been in a situation yet where it hasn't had the ability to stop, steer or accelerate to do what I wanted.
Significant Difference
As today has gone along I've been steadily improving. Sure, my hearing isn't anywhere near back to normal but my whole body feels less constricted and my head is clearing out at last. I was finding it difficult to concentrate on anything that needed brain power and now I can actually set to and do somethings.
I've sorted out the PC and got that cleaned up, backed up and working properly. I've sorted some of my diary and calendar out for the year and I've got a clean desk - well this desk is clear - the other one has a load of paper to be shifted on it!!
At this rate, I could be back to normal in a few days which will be just great. It is amazing how quickly this is coming on. I'm impressed.
I've sorted out the PC and got that cleaned up, backed up and working properly. I've sorted some of my diary and calendar out for the year and I've got a clean desk - well this desk is clear - the other one has a load of paper to be shifted on it!!
At this rate, I could be back to normal in a few days which will be just great. It is amazing how quickly this is coming on. I'm impressed.
My Yearly Planner
I have actually managed to set up my yearly planner and start to populate it with things that I am "meant" to be doing. I have just realised though that I have a potential problem if my treatment starts in the next week or two with a clash on meeting dates.
As treatment is on a Monday it usually takes Monday and Tuesday for me to recover properly. That means that a meeting on a Tuesday afternoon (and I have one of those) may well be a problem for me. I've asked a friend if he can cover for me.
It is surprising just how many things are happening this year and also how many are going to clash with Mondays and Tuesdays.
February looks busy as does May and as soon as I get back to work I have to do quite a bit of work to get things ready for major meetings coming up in April and June - it sounds a long way off but believe me - it soon rattles around.
I'm rocked back on my planning because I've got to go back onto maintenance and I haven't been thinking things through properly but in a way my cold and deafness hasn't allowed me to. Today seems a good day and I'm in a bit of a quandary as to what to do this year. I had great plans to get myself off and doing things and I find myself wanting to make plans but being reticent about doing so. It comes back to knowing when your treatments are going to happen and then when the operations will be and so on. I know I have 3 BCGs coming. In my view they could start next Monday or the Monday after.
Either way there are a series of issues with trying to plan anything although I know that they can move appointments just look at the routine operation I had before Christmas. - it is now over a month since I had that and I still feel like poo. In fact you could almost say it is 6 weeks due to the disruption of being cancelled. You know if you planned a holiday for a week after biopsies or something like that you wouldn't have confidence (now) that you'd enjoy yourself and to my mind, the major thing I need this year are breaks and holidays to recuperate a bit and recharge myself, I feel really run down and out of it. I need to build myself back up again so that the treatments and operations don't knock me about as much and so I can recover faster.
As treatment is on a Monday it usually takes Monday and Tuesday for me to recover properly. That means that a meeting on a Tuesday afternoon (and I have one of those) may well be a problem for me. I've asked a friend if he can cover for me.
It is surprising just how many things are happening this year and also how many are going to clash with Mondays and Tuesdays.
February looks busy as does May and as soon as I get back to work I have to do quite a bit of work to get things ready for major meetings coming up in April and June - it sounds a long way off but believe me - it soon rattles around.
I'm rocked back on my planning because I've got to go back onto maintenance and I haven't been thinking things through properly but in a way my cold and deafness hasn't allowed me to. Today seems a good day and I'm in a bit of a quandary as to what to do this year. I had great plans to get myself off and doing things and I find myself wanting to make plans but being reticent about doing so. It comes back to knowing when your treatments are going to happen and then when the operations will be and so on. I know I have 3 BCGs coming. In my view they could start next Monday or the Monday after.
Either way there are a series of issues with trying to plan anything although I know that they can move appointments just look at the routine operation I had before Christmas. - it is now over a month since I had that and I still feel like poo. In fact you could almost say it is 6 weeks due to the disruption of being cancelled. You know if you planned a holiday for a week after biopsies or something like that you wouldn't have confidence (now) that you'd enjoy yourself and to my mind, the major thing I need this year are breaks and holidays to recuperate a bit and recharge myself, I feel really run down and out of it. I need to build myself back up again so that the treatments and operations don't knock me about as much and so I can recover faster.
A new week and a better outlook
I felt much better this morning than I have done for weeks. Whilst I wasn't as fresh as a daisy I still felt much better and almost, but not quite, had a clear head. I've still got the ringing in my ear and I can still hear pumping noises but it appears to be getting a lot better. It sounds as if someone has let a bowl of Rice Krispies off in my ear :-). There are lots of noises and pops coming through so perhaps it is getting near to a point when the large pop happens and suddenly I can hear again.
Interestingly enough, I can hear the fans on the PCs in my office today which I couldn't yesterday so a marked improvement. I hope it continues.
Interestingly enough, I can hear the fans on the PCs in my office today which I couldn't yesterday so a marked improvement. I hope it continues.
Sunday, January 25, 2009
Jeepers
I was working out roughly how much time I'd have off this year from being ill and treatments and all in all it works out to about 3 months off work!! That is a 1/4 of this year - gulp. Add some holidays to that and - well - I could just show my face next week and probably not see everyone for another couple of months :-)
Strewth.
Strewth.
As I head off into my 3rd week of deafness
I can't even begin to tell you what a bloody misery it has been with my tinnitus giving a high pitched screech in my head all the time and the muffled sound that I can't work out where they come from and the feeling of claustrophobia and being trapped inside my own body. Dreadful few weeks and just added to the way I felt after they banged me about in the Hospital too. Two weeks so far I've had this!
Added to that my electronic equipment committing Harakiri and 2009 has gotten off to a start that I want to forget.
I am due out tomorrow on Escort Duty but I wont touch any beer or wine and will have to be very careful of what I eat as the Antibiotics are also ensuring that what little food I am eating doesn't hang around long!
I am keeping my spirits up though - not sure how I am doing that - and just working my way through it. I actually think that I am taking my own advice in saying it is no use rushing back to work if you are ill and it is no use worrying about it either. What will be will be and where I used to be upset about missing work or anything like that well - what is the worst that can happen? As I've said before "no one dies" so it is OK.
I think it is just so frustrating to be sat here, behind in my University work, repairing PCs when I could be doing something else and so on.
Tomorrow takes me in to week 3 and the last week of January. If I'm brutally honest, I can't see myself being ready to go back to work much before Thursday or Friday and that is if the whole of my body cooperates to let me.
Oh well, thank goodness for the blog to let off a bit of steam now and then.
Added to that my electronic equipment committing Harakiri and 2009 has gotten off to a start that I want to forget.
I am due out tomorrow on Escort Duty but I wont touch any beer or wine and will have to be very careful of what I eat as the Antibiotics are also ensuring that what little food I am eating doesn't hang around long!
I am keeping my spirits up though - not sure how I am doing that - and just working my way through it. I actually think that I am taking my own advice in saying it is no use rushing back to work if you are ill and it is no use worrying about it either. What will be will be and where I used to be upset about missing work or anything like that well - what is the worst that can happen? As I've said before "no one dies" so it is OK.
I think it is just so frustrating to be sat here, behind in my University work, repairing PCs when I could be doing something else and so on.
Tomorrow takes me in to week 3 and the last week of January. If I'm brutally honest, I can't see myself being ready to go back to work much before Thursday or Friday and that is if the whole of my body cooperates to let me.
Oh well, thank goodness for the blog to let off a bit of steam now and then.
The Big PC
Is back online but awfully slow - it needs some TLC. It WAS the power supply - it looked as much and it is the second time I have had to replace it. This one runs 24x7 as it allows the rest of the house to function using printers and other shared resources.
That will take its toll of course especially as the fans drag in dust and muck. Anyway, Mrs. F Dashed down the road after I ordered online and we are almost back to normal. The file system took a bit of a bash by the looks of it and so I am doing some maintenance checks. It didn't help that I needed to do some messing around inside the box but we have now changed the office layout so that the PC sits higher up, the printers are facing the right way around and at least things look a little neater than they did.
It has blown away my chance of doing any University Assignment work today which is a real shame as I wanted to give a good day's effort. Tomorrow will have to do. I can't see myself recovered enough in the morning to go to work - in fact I can't see me being much better before mid to late week in reality.
My hearing, is in the upper ranges at the moment so a scream will really wake me up but any deep notes are still unheard. I tried some more nose blowing and the like but to no avail. I've dropped a note to the office to say I won't be in tomorrow. The rate things are going I wont get back until February and then just in time to start my treatments!
That will take its toll of course especially as the fans drag in dust and muck. Anyway, Mrs. F Dashed down the road after I ordered online and we are almost back to normal. The file system took a bit of a bash by the looks of it and so I am doing some maintenance checks. It didn't help that I needed to do some messing around inside the box but we have now changed the office layout so that the PC sits higher up, the printers are facing the right way around and at least things look a little neater than they did.
It has blown away my chance of doing any University Assignment work today which is a real shame as I wanted to give a good day's effort. Tomorrow will have to do. I can't see myself recovered enough in the morning to go to work - in fact I can't see me being much better before mid to late week in reality.
My hearing, is in the upper ranges at the moment so a scream will really wake me up but any deep notes are still unheard. I tried some more nose blowing and the like but to no avail. I've dropped a note to the office to say I won't be in tomorrow. The rate things are going I wont get back until February and then just in time to start my treatments!
Once more into the hiss dear friends
Last night I descended back into hissing and tinnitus but this morning - once again - on clearing my nose my ear has cracked and popped back into life and I can hear things although they are as if off in the distance. I hope that during the day things get a little better.
I cannot believe the run of illness I am having at the moment. I thought I was reasonably fit and well before Christmas. This morning I still have the rather unpleasant side effects of the antibiotics, my stomach has been making bubbling and churning noises all night and even after some breakfast continues to do so. I feel weak, slightly dizzy (of course with my ear I would have that) and still have a blocked up nose and sinuses although they do seem to be clearing.
So - I'm once again drugged up to the eyeballs and hoping to be well again soon. It seems to be dragging on and on and it is another reason that I am probably not quite my 100% full-on cheerful, optimistic chappy.
I got a lovely letter from my Mum and Dad yesterday enclosing loads of jokes they had cut out of the paper and then, bless their cotton socks, they included a nice cheque so that the 4 of us can go out for a family meal as "we've had a bit of a rough month" so we can go and cheer ourselves up. That was a nice gesture. If anyone else would like to send me money........ :-)
Anyway, on that cheerful note, I now need to go and see what is wrong with my big PC and see if I can sort that out quickly.
I cannot believe the run of illness I am having at the moment. I thought I was reasonably fit and well before Christmas. This morning I still have the rather unpleasant side effects of the antibiotics, my stomach has been making bubbling and churning noises all night and even after some breakfast continues to do so. I feel weak, slightly dizzy (of course with my ear I would have that) and still have a blocked up nose and sinuses although they do seem to be clearing.
So - I'm once again drugged up to the eyeballs and hoping to be well again soon. It seems to be dragging on and on and it is another reason that I am probably not quite my 100% full-on cheerful, optimistic chappy.
I got a lovely letter from my Mum and Dad yesterday enclosing loads of jokes they had cut out of the paper and then, bless their cotton socks, they included a nice cheque so that the 4 of us can go out for a family meal as "we've had a bit of a rough month" so we can go and cheer ourselves up. That was a nice gesture. If anyone else would like to send me money........ :-)
Anyway, on that cheerful note, I now need to go and see what is wrong with my big PC and see if I can sort that out quickly.
Got it again
I can't believe I had another of these mild panic attacks again tonight. I was OK as I caught it just as I got to bed and just got straight up again and went downstairs. The hearing improvements disappeared and in its place has come a further deafness and slight dizziness that goes with it and hence the feeling of being hemmed in.
I've spent an hour or so downstairs and a few moments in the garden and seem to be OK now. I'm absolutely convinced it is to do with the ear problems and the remnants of the cold. I really could do with it being over and done with so I can get back to some level of normality.
I even had a slight attack in the Hospital that meant I had to go and stand outside for 5 minutes to clam down - luckily I was able to sit away from the crowds and enjoy some breeze from an open door - why on earth they keep hospitals at that heat I'll never know.
Anyway - I managed to get some of my University work done today and hope to have a dig at the rest tomorrow and next week. I realised too late that I should have done some more work on the bit I submitted. Hopefully it wont bring my mark down too far. I'm hovering at Merit/Distinction level but really want to be Distinction throughout if I can. Mind you given how I've been this last few weeks I'm surprised I can even concentrate on it.
So - off to bed and see how I get on.
I've spent an hour or so downstairs and a few moments in the garden and seem to be OK now. I'm absolutely convinced it is to do with the ear problems and the remnants of the cold. I really could do with it being over and done with so I can get back to some level of normality.
I even had a slight attack in the Hospital that meant I had to go and stand outside for 5 minutes to clam down - luckily I was able to sit away from the crowds and enjoy some breeze from an open door - why on earth they keep hospitals at that heat I'll never know.
Anyway - I managed to get some of my University work done today and hope to have a dig at the rest tomorrow and next week. I realised too late that I should have done some more work on the bit I submitted. Hopefully it wont bring my mark down too far. I'm hovering at Merit/Distinction level but really want to be Distinction throughout if I can. Mind you given how I've been this last few weeks I'm surprised I can even concentrate on it.
So - off to bed and see how I get on.
Saturday, January 24, 2009
Do you ever get the feeling that
Someone is telling you something?
I got that tonight when I came to get onto my big PC - the one that acts as a server in the house. Dead - no lights on, not the fuse, probably (I hope) the power supply. Of course, could it go at a worse time? No of course not. I have a major mailing to do at the end of the week and bless it, it has just gone and died on me. Luckily I did buy a 1 TB back up drive and have recently backed up the whole thing - which will be useful if I have to do a re-build but I certainly hope it isn't that bad.
If it is just the power supply at least I can change that on Monday and get back to work. But to lose two PCs in a month is that hard luck or what? Crikey if 2009 carries on this way I may as well pack it all in :-)
I worked out that I will probably end up losing most of January's money but in addition, up to 50 days off of work this year, excluding holidays with treatment and hospital appointments. That's a good two months - say three months with January that I won't be billing for.
Oh well - no one died :-) And after all, its only money!!!
I got that tonight when I came to get onto my big PC - the one that acts as a server in the house. Dead - no lights on, not the fuse, probably (I hope) the power supply. Of course, could it go at a worse time? No of course not. I have a major mailing to do at the end of the week and bless it, it has just gone and died on me. Luckily I did buy a 1 TB back up drive and have recently backed up the whole thing - which will be useful if I have to do a re-build but I certainly hope it isn't that bad.
If it is just the power supply at least I can change that on Monday and get back to work. But to lose two PCs in a month is that hard luck or what? Crikey if 2009 carries on this way I may as well pack it all in :-)
I worked out that I will probably end up losing most of January's money but in addition, up to 50 days off of work this year, excluding holidays with treatment and hospital appointments. That's a good two months - say three months with January that I won't be billing for.
Oh well - no one died :-) And after all, its only money!!!
Pop, Pop, Click, Buzz, Pop, Squeak, Hiss
Interesting morning. Blocked nose, so blew and my ear gave off many of the above noises and whilst I can still hear my blood pumping and the tinnitus I can actually hear something out of the ear now as the last pop sort of cleared something up obviously.
Luckily it isn't all back full on volume, I had that once and it was if every one and everything was SHOUTING at me. Going outside and hearing traffic was very frightening.
So that is something and I hope that over the weekend will gradually get better.
It's strange that I should be a little angry or perhaps resentful about having to do another year's worth of treatment. It shows you how your expectations change. I'll have to go back to having my original worst case scenario mindset when I go to see the Consultant. If I go back 30 months then would I have settled for it being 42 months to get better? Of course I would. In fact back in those days I expected that I wouldn't be discharged, if all went well, until I was in my 60s so I need to reset expectations.
I'm probably angry because, once again, I find I need to rely on other people and also that it limits what I want to do. I'm obviously finding "learning to live with it" a bit more difficult than I thought I would but then that because I didn't think I needed to anymore.
A lot of people were concerned that I was seriously depressed about things and I can see that from the tone of my e-mail to them- I used the word bad where perhaps not so good or some other words were more appropriate but at the end of the day I was probably angry and a bit depressed for a day but I have an underlying logical mind and when you look at what is actually presented and not forgetting that I am not an Oncologist or Urologist or a Doctor then it makes sense that to be absolutely sure then a course of maintenance is the best course.
I'll get over it. It looks like my retail therapy has just arrived at the door. I bought myself a six nations Rugby shirt so when I do go down the pub I can wear that.
I also feel the need for my Monty Python Tee Shirt to get an Airing. It has emblazoned my favourite phrase from when I was just diagnosed:
Luckily it isn't all back full on volume, I had that once and it was if every one and everything was SHOUTING at me. Going outside and hearing traffic was very frightening.
So that is something and I hope that over the weekend will gradually get better.
It's strange that I should be a little angry or perhaps resentful about having to do another year's worth of treatment. It shows you how your expectations change. I'll have to go back to having my original worst case scenario mindset when I go to see the Consultant. If I go back 30 months then would I have settled for it being 42 months to get better? Of course I would. In fact back in those days I expected that I wouldn't be discharged, if all went well, until I was in my 60s so I need to reset expectations.
I'm probably angry because, once again, I find I need to rely on other people and also that it limits what I want to do. I'm obviously finding "learning to live with it" a bit more difficult than I thought I would but then that because I didn't think I needed to anymore.
A lot of people were concerned that I was seriously depressed about things and I can see that from the tone of my e-mail to them- I used the word bad where perhaps not so good or some other words were more appropriate but at the end of the day I was probably angry and a bit depressed for a day but I have an underlying logical mind and when you look at what is actually presented and not forgetting that I am not an Oncologist or Urologist or a Doctor then it makes sense that to be absolutely sure then a course of maintenance is the best course.
I'll get over it. It looks like my retail therapy has just arrived at the door. I bought myself a six nations Rugby shirt so when I do go down the pub I can wear that.
I also feel the need for my Monty Python Tee Shirt to get an Airing. It has emblazoned my favourite phrase from when I was just diagnosed:
"I'm Not Dead Yet!"
Friday, January 23, 2009
In The Breakers Yard of Dreams
The lost, abandoned and forgotten dreams lie rotting one on another; decaying, uncared for and piled in the mud and the debris awaiting the merciful jaws of the crusher. Business ideas, plans for a brighter future, get rich schemes, global peace, health, happiness and an end to poverty await the moment they are reduced to fragments and returned from whence they came.
Overhead the rain sodden clouds continue to pour their neck chilling rain onto the hellish scene and the darkness and howling wind chills my soul. A momentary upturn of my face into the teeth of the wind and rain and defiantly I cast my plans for 2009 onto the heap to await their turn to be compacted, fragmented and lost to the black hole where failed dreams lie forever.
Turning my back on the scene, the clouds part and the sun rises majestically over a pleasant green countryside, the breakers yard of dreams has disappeared and in its place are the sights, sounds and smells of a promising spring day. Life is returning, shoots on trees, plants emerging, warmth in the air and longer days strengthen me and I am free to dream and plan again. Life's good, life's OK, I choose to enjoy the day and dream again.
Overhead the rain sodden clouds continue to pour their neck chilling rain onto the hellish scene and the darkness and howling wind chills my soul. A momentary upturn of my face into the teeth of the wind and rain and defiantly I cast my plans for 2009 onto the heap to await their turn to be compacted, fragmented and lost to the black hole where failed dreams lie forever.
Turning my back on the scene, the clouds part and the sun rises majestically over a pleasant green countryside, the breakers yard of dreams has disappeared and in its place are the sights, sounds and smells of a promising spring day. Life is returning, shoots on trees, plants emerging, warmth in the air and longer days strengthen me and I am free to dream and plan again. Life's good, life's OK, I choose to enjoy the day and dream again.
The Day After
Hearing is still way down but gradually - all so gradually - getting better. The Antibiotics are continuing to give me their known side effects. - which doesn't make for feeling a great deal better. The high dosage I have been given most certainly can't be helping in that direction.
I'm in a neutral mood this morning and I still can't quite believe that I've got to go through another two rounds of BCGs and Operations but I'm not anti doing it, I just know that they are out there waiting for me. It is the shock of thinking that it was the last of them and putting them behind you to then find them back on the agenda that is the shock. It is also that, I'd only recently come to terms with the fact that I hated these things and how unpleasant they were as I'd previously suppressed that. The last operation which, let's face it, should have been routine pretty much wrecked my Christmas and New Year and I'm sure that these colds, Flu and ear infection just followed up on how weak I was post op.
So - neutral about things which I sure will change the more I think about it. It is difficult to discuss things when you can't actually hear what people are saying and so after a short time I am sure that I will get a better attitude and be a little more positive than I presently am. I intend to go out with friends when I am better and talk it through with them as they always help me to see reason. At the moment I am in the denial and angry state and know that i shouldn't be but that is just the nature of how your mind works. I know I will change my mind and that it is good news - it just doesn't look that way to me yet.
I'll be watching my attitude change with interest in the coming weeks :-)
I'm in a neutral mood this morning and I still can't quite believe that I've got to go through another two rounds of BCGs and Operations but I'm not anti doing it, I just know that they are out there waiting for me. It is the shock of thinking that it was the last of them and putting them behind you to then find them back on the agenda that is the shock. It is also that, I'd only recently come to terms with the fact that I hated these things and how unpleasant they were as I'd previously suppressed that. The last operation which, let's face it, should have been routine pretty much wrecked my Christmas and New Year and I'm sure that these colds, Flu and ear infection just followed up on how weak I was post op.
So - neutral about things which I sure will change the more I think about it. It is difficult to discuss things when you can't actually hear what people are saying and so after a short time I am sure that I will get a better attitude and be a little more positive than I presently am. I intend to go out with friends when I am better and talk it through with them as they always help me to see reason. At the moment I am in the denial and angry state and know that i shouldn't be but that is just the nature of how your mind works. I know I will change my mind and that it is good news - it just doesn't look that way to me yet.
I'll be watching my attitude change with interest in the coming weeks :-)
Thursday, January 22, 2009
Late evening reflection
Well what a day. Of course the headline news is that I am clear. Not only am I clear, but Steve K in the USA is also clear - good one Steve - it is early on and this is his 2nd all clear which really is great news. This is my 4th clear.
We are both off on slightly different regimes now. I am off on some sort of maintenance gig and Steve will now repeat 3 BCGs and then get another Poke and Peek using a Flexible Cystoscopy and I will have 3 plus another 3 BCGs and get a Rigid Cystoscopy and biopsies - if they are clear I get a repeat performance of that. It seems over here in the UK that they favour full biopsies taken from all over the bladder and in the US they are happy to do a visual. The BCG immunotherapy regime is also different too.
The thing that brought me up suddenly was that I needed to go back on the BCG maintenance for a further year. It really is a belt and braces thing and I'm shocked a bit about that but at the same time, that is what the Consultant says ought to happen and if it increases my chances of staying clear and limiting recurrence then hey, I'm all for it.
I suppose it is difficult to communicate the disappointment to anyone unless you have to go through it or have gone through it but imagine, if you will, having it all explained to you that there isn't anything wrong with you, that they haven't actually detected anything wrong with you in 18 months but they are going to treat you as if you did have something wrong with - just in case.
You don't mess around (I would use a stronger adjective there in other circumstances) with Cancer. If they see it, they cut it out, if it can be annihilated with BCG, they do that. In Bladder Cancer country - it recurs with alarming regularity. It is treatable as you can see. If it is caught early and of the right grade you can be treated and cleared of it. So you can see that there is no other choice than but to go through it all again. It is tiresome, more than that it has continued to wreak havoc with my life in terms of tearing up schedules and making work and other thing unpredictable (Steve K is a Myers Brigg ISTJ I am an INTJ) we need to work in predictable, logical and structured ways as we are the planners and managers in the world. Want to upset me - take away my plans or disrupt how I have mapped things out and you'll do just that.
Today didn't go to plan - that was why I was off balance. Things didn't work out the way I had expected them to and what I had in mind for the rest of the year was torn up and lies in tatters around me.
Logically, I need to have the treatment and my work appears to be supportive about it. From expecting to have 2 days worth of Hospital appointments this year (2 flexi peek and pokes) plus a day for tests, I now have the prospect of 24 days worth of BCGs, 10 to 20 days for operations and "normal" recovery, 2 days for pre-assessments and 2 days for consultation off work. That could mean that this year I would end up taking almost 2 months off work and I've almost had the whole of this month off with the fallout of the last operation and the colds and infection that followed afterwards!
That is what I mean by affecting my year. I was planning on doing a lot of things that I couldn't do last year but dates of treatments and operations etc will now all need to be factored in so it makes for an uncertain life. I suppose I could refuse certain days or get the Hospital to avoid certain things but it all has to fit around my treatments and I don't know when they will start now and hence what the knock on is going to be. I've accepted certain appointments now that will probably have to be cancelled too. It is just the fact that you can't plan and that your time is fragmented and a BCG treatment over three weeks seriously messes things up. For example it takes two days out of each week for three weeks. Generally they are Mondays and Tuesdays and sometime, if you are feeling bad a Wednesday too. Travelling isn't easy straight afterwards and you need to time and plan getting to and from work carefully.
Additionally, after 12 weeks you are meant to have your biopsies and yet it can be 10 or 14 weeks it depends on their timetable.
So - that is really what tends to mess up people like me who are planners - it becomes uncertain and the side effects are uncertain and trying to organise anything is a bit of a hit and miss affair. Having always been one for keeping appointments and keeping to time, having milestone dates and targets and hitting them to suddenly not meet those dates and to have this much uncertainty and doubt is difficult to contend with. If I were totally disorganised it would all be so much better as it would appear normal.
I've done enough reflecting for one night and had quite enough of today. It is one of those days where you just can't quite believe what has happened to you. tomorrow, in the light, it may all appear so much clearer.
We are both off on slightly different regimes now. I am off on some sort of maintenance gig and Steve will now repeat 3 BCGs and then get another Poke and Peek using a Flexible Cystoscopy and I will have 3 plus another 3 BCGs and get a Rigid Cystoscopy and biopsies - if they are clear I get a repeat performance of that. It seems over here in the UK that they favour full biopsies taken from all over the bladder and in the US they are happy to do a visual. The BCG immunotherapy regime is also different too.
The thing that brought me up suddenly was that I needed to go back on the BCG maintenance for a further year. It really is a belt and braces thing and I'm shocked a bit about that but at the same time, that is what the Consultant says ought to happen and if it increases my chances of staying clear and limiting recurrence then hey, I'm all for it.
I suppose it is difficult to communicate the disappointment to anyone unless you have to go through it or have gone through it but imagine, if you will, having it all explained to you that there isn't anything wrong with you, that they haven't actually detected anything wrong with you in 18 months but they are going to treat you as if you did have something wrong with - just in case.
You don't mess around (I would use a stronger adjective there in other circumstances) with Cancer. If they see it, they cut it out, if it can be annihilated with BCG, they do that. In Bladder Cancer country - it recurs with alarming regularity. It is treatable as you can see. If it is caught early and of the right grade you can be treated and cleared of it. So you can see that there is no other choice than but to go through it all again. It is tiresome, more than that it has continued to wreak havoc with my life in terms of tearing up schedules and making work and other thing unpredictable (Steve K is a Myers Brigg ISTJ I am an INTJ) we need to work in predictable, logical and structured ways as we are the planners and managers in the world. Want to upset me - take away my plans or disrupt how I have mapped things out and you'll do just that.
Today didn't go to plan - that was why I was off balance. Things didn't work out the way I had expected them to and what I had in mind for the rest of the year was torn up and lies in tatters around me.
Logically, I need to have the treatment and my work appears to be supportive about it. From expecting to have 2 days worth of Hospital appointments this year (2 flexi peek and pokes) plus a day for tests, I now have the prospect of 24 days worth of BCGs, 10 to 20 days for operations and "normal" recovery, 2 days for pre-assessments and 2 days for consultation off work. That could mean that this year I would end up taking almost 2 months off work and I've almost had the whole of this month off with the fallout of the last operation and the colds and infection that followed afterwards!
That is what I mean by affecting my year. I was planning on doing a lot of things that I couldn't do last year but dates of treatments and operations etc will now all need to be factored in so it makes for an uncertain life. I suppose I could refuse certain days or get the Hospital to avoid certain things but it all has to fit around my treatments and I don't know when they will start now and hence what the knock on is going to be. I've accepted certain appointments now that will probably have to be cancelled too. It is just the fact that you can't plan and that your time is fragmented and a BCG treatment over three weeks seriously messes things up. For example it takes two days out of each week for three weeks. Generally they are Mondays and Tuesdays and sometime, if you are feeling bad a Wednesday too. Travelling isn't easy straight afterwards and you need to time and plan getting to and from work carefully.
Additionally, after 12 weeks you are meant to have your biopsies and yet it can be 10 or 14 weeks it depends on their timetable.
So - that is really what tends to mess up people like me who are planners - it becomes uncertain and the side effects are uncertain and trying to organise anything is a bit of a hit and miss affair. Having always been one for keeping appointments and keeping to time, having milestone dates and targets and hitting them to suddenly not meet those dates and to have this much uncertainty and doubt is difficult to contend with. If I were totally disorganised it would all be so much better as it would appear normal.
I've done enough reflecting for one night and had quite enough of today. It is one of those days where you just can't quite believe what has happened to you. tomorrow, in the light, it may all appear so much clearer.
Oh dear, how sad, NEVER MIND!!
The immortal words of Windsor Davis in "It Ain't 'Alf 'Ot Mum!"
Never mind indeed. Third time cancer free, 18 months without recurrence and that is what I have to remember. The BCGs are tolerable, the operations really aren't good - especially after the last one - perhaps I need to make a fuss about it when I go for pre-assessment this time and see if I can get some sort of dispensation on what they normally do to me.
It's a pernicious disease eating at your body and at your mind and yet I don't have it. I haven't got it, I'm free of cancer and have been for ages. My mind is thinking that there is some sort of set back here or retrograde step and that isn't true. Sure it may not be that you just get scoped once every 3 or 6 months - this way they actually do cytology on you - full biopsies, belt and braces. BCG even though there isn't CIS, TCC or anything else in your bladder.
It is all about preventative maintenance and not about cure. We've done cure, we've had the heavy TURBT and Re-Turbt, the initial BCGs that removed the last traces of the cancer. It is all moving in the right direction. It just isn't moving as fast as I wanted and it was a big surprise that another year's worth of treatment was required. A big surprise.
At least I'll have something to moan and whinge about for the next year then :-)
Yes I know - honestly I do - I've just got to get over it and work out what to do this coming year and re-plan yet again.
Never mind indeed. Third time cancer free, 18 months without recurrence and that is what I have to remember. The BCGs are tolerable, the operations really aren't good - especially after the last one - perhaps I need to make a fuss about it when I go for pre-assessment this time and see if I can get some sort of dispensation on what they normally do to me.
It's a pernicious disease eating at your body and at your mind and yet I don't have it. I haven't got it, I'm free of cancer and have been for ages. My mind is thinking that there is some sort of set back here or retrograde step and that isn't true. Sure it may not be that you just get scoped once every 3 or 6 months - this way they actually do cytology on you - full biopsies, belt and braces. BCG even though there isn't CIS, TCC or anything else in your bladder.
It is all about preventative maintenance and not about cure. We've done cure, we've had the heavy TURBT and Re-Turbt, the initial BCGs that removed the last traces of the cancer. It is all moving in the right direction. It just isn't moving as fast as I wanted and it was a big surprise that another year's worth of treatment was required. A big surprise.
At least I'll have something to moan and whinge about for the next year then :-)
Yes I know - honestly I do - I've just got to get over it and work out what to do this coming year and re-plan yet again.
Mixed Emotions
Laugh or Cry, Be happy or sad, rejoice or be sorrowful?
I really not sure what to do. I should be delighted in a way that I am cancer free, have no pre-cancerous cells at all and everything is great and looks fine and "you're doing well and it is a great step forward".
But - there were atypical cells in there. So to be absolutely sure, I'm back on maintenance - not sure exactly but I heard it as 3 BCGs every 3 months with Rigid Cystoscopies at 6 months and 12 months (deep joy!). I'll find out very soon - I expect that I'll commence in February - it might be 3 BCG followed by 9 week then another 3, 12 weeks later rigid cysto.
So I don't know how I am at the moment. I'm a little bit shocked to tell the truth - I thought that I was out of the woods, off the Roller Coaster and on for a life time of observation. As it is, I've another year added to my sentence.
I know I'll feel differently about this later - it is a bit of a downer but it really isn't - it will teach me for being optimistic though :-)
Oh well, life goes on..
I really not sure what to do. I should be delighted in a way that I am cancer free, have no pre-cancerous cells at all and everything is great and looks fine and "you're doing well and it is a great step forward".
But - there were atypical cells in there. So to be absolutely sure, I'm back on maintenance - not sure exactly but I heard it as 3 BCGs every 3 months with Rigid Cystoscopies at 6 months and 12 months (deep joy!). I'll find out very soon - I expect that I'll commence in February - it might be 3 BCG followed by 9 week then another 3, 12 weeks later rigid cysto.
So I don't know how I am at the moment. I'm a little bit shocked to tell the truth - I thought that I was out of the woods, off the Roller Coaster and on for a life time of observation. As it is, I've another year added to my sentence.
I know I'll feel differently about this later - it is a bit of a downer but it really isn't - it will teach me for being optimistic though :-)
Oh well, life goes on..
Dawn - Judgement Day
Well a bit later than dawn. Had to be shaken awake by Mrs. F. I'm up and showered and knocking back a fist-full of Pills. It is rainy and windy outside which I don't need - I'll walk to the Hospital as there isn't anywhere to park really. I will obviously keep my mouth closed as with these pills rattling around me I could be mistaken as a whistle.
My hearing has improved a little bit. I can certainly hear a little bit from one ear now and a lot more out of the good one. I'll make sure they are aware at the Hospital that they may need to SHOUT at me.
I noted that I had 6 procedures and 24 BCGs in 30 months. So that is something every month for that time if you look at it that way.
In a little over an hour and a half I'll get going off to the Hospital. I was going to take my laptop in to the local PC man on the way to see if they could rescue any of the data but as I can hardly hear myself talking felt it may be difficult to explain what I had done and what I want them to do. Being in the business I don't want them to spend inordinate efforts redoing what I have already done and I also need to set the scene about what I need rescued as most is backed up except a couple of spreadsheets that are pretty important and I hadn't backed them up for a couple of months. If it can't be recovered then it is annoying and means more effort on my part to be creative especially as they were accounts :-)
I've go my list of medication, my questions and I can't really take down a book or music as I need to concentrate on what people are saying so I know when it is "my turn" because of this muffled deafness.
So here I am after a 30 month Roller Coaster Ride wondering whether as it pulls into the terminus this time it will actually stop and let me off? If it does, I can go on one of the lesser rides (please not "It's a Small World")....
More later I'm sure, for the moment I'm looking forward to seeing my Consultant and hearing what the results are and what is going to happen next.
My hearing has improved a little bit. I can certainly hear a little bit from one ear now and a lot more out of the good one. I'll make sure they are aware at the Hospital that they may need to SHOUT at me.
I noted that I had 6 procedures and 24 BCGs in 30 months. So that is something every month for that time if you look at it that way.
In a little over an hour and a half I'll get going off to the Hospital. I was going to take my laptop in to the local PC man on the way to see if they could rescue any of the data but as I can hardly hear myself talking felt it may be difficult to explain what I had done and what I want them to do. Being in the business I don't want them to spend inordinate efforts redoing what I have already done and I also need to set the scene about what I need rescued as most is backed up except a couple of spreadsheets that are pretty important and I hadn't backed them up for a couple of months. If it can't be recovered then it is annoying and means more effort on my part to be creative especially as they were accounts :-)
I've go my list of medication, my questions and I can't really take down a book or music as I need to concentrate on what people are saying so I know when it is "my turn" because of this muffled deafness.
So here I am after a 30 month Roller Coaster Ride wondering whether as it pulls into the terminus this time it will actually stop and let me off? If it does, I can go on one of the lesser rides (please not "It's a Small World")....
More later I'm sure, for the moment I'm looking forward to seeing my Consultant and hearing what the results are and what is going to happen next.
Wednesday, January 21, 2009
Don't think too hard about it
Off to bed, still not got my hearing back but it has improved (if that makes sense?). In other words I can hear more than I could but nowhere near as much as I probably need to.
I am going to try not to think too much about anything tonight and let it wash over me a bit. Tomorrow - well it will bring what it brings and I hope for good things now. I've thrown off the think of the worst thing and you wont be disappointed to actually daring to think it will be OK. I hope that I am right.
At the same time, I'm going to be thinking about Steve K over in the USA who will be having his Poke and Peek tomorrow. It is a slightly different protocol as he is having a flexible cystoscopy but nonetheless, it will be a big day as a good result is to go on to the next course of Immunotherapy. I'm praying that it will be the case.
I've just remembered, or should I say been reminded, what one of the side effects of antibiotics is. Not pleasant - not for publication. I sure hope they are doing their thing and tomorrow will see another improvement. I haven't had the worries about going to bed tonight. I think that things have just relieved enough - certainly the pressure is off my ear drum now that I can get to bed OK.
I hope sweet dreams to follow and a good day tomorrow. Night all...
I am going to try not to think too much about anything tonight and let it wash over me a bit. Tomorrow - well it will bring what it brings and I hope for good things now. I've thrown off the think of the worst thing and you wont be disappointed to actually daring to think it will be OK. I hope that I am right.
At the same time, I'm going to be thinking about Steve K over in the USA who will be having his Poke and Peek tomorrow. It is a slightly different protocol as he is having a flexible cystoscopy but nonetheless, it will be a big day as a good result is to go on to the next course of Immunotherapy. I'm praying that it will be the case.
I've just remembered, or should I say been reminded, what one of the side effects of antibiotics is. Not pleasant - not for publication. I sure hope they are doing their thing and tomorrow will see another improvement. I haven't had the worries about going to bed tonight. I think that things have just relieved enough - certainly the pressure is off my ear drum now that I can get to bed OK.
I hope sweet dreams to follow and a good day tomorrow. Night all...
Less than 24 hours to go
So how did we get here?
1 Visit to the Doctors
1 Flexible Cystoscopy & consultation/diagnosis
1 TURBT and biopsies
1 Intravenous Urogram (IVU) or intravenous Pyelogram (IVP)
1 Re-TURBT and Biopsies
6 BCGs
1 Rigid Cystoscopy
6 BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
7 Consultations + visits to GPs when required.
5 Pre-assessments
Of all the procedures, in three cases I was catheterised overnight or longer - the 2 TURBT for 2 nights and the last Rigid Cystoscopy overnight.
A total of 24 BCG, Immunotherapy Treatments - all full dose and each involves the insertion of a small catheter (no local anaesthetic) to instill the BCG and between 24 and 48 hours side effects. For 6 -8 hours after the procedure, the bathroom at home is treated as a hazardous area and is subjected to bleaching and cleaning procedures after passing the BCG out of your bladder.
Of the side effects I had the first few visits to the Hospital saw me get a nasty series of "heat" rashes from the beds and also that both operations and recoveries were on some of the hottest days of the year. The BCGs varied from nothing to complete agony and searing pain to Flu like symptoms, to bones aching and cramps, fevers and chills and anything in between. However, I was told it would be worse than that so in a way I felt that I'd got away mildly as many never go the full course!!
The Silver lining is that we caught my high blood pressure and I am on treatment for that which in a way, much as I hate drugs of any kind, means that I get checked regularly for that and continue to be monitored - which is no bad thing.
Diet - that has changed a bit but I was never one for fast food or anything other than reasonable balanced diet. I now err more towards vegetables and fruit but I'm not freaky about it but did get so at one point about 18 months ago. Other changes. I try every day to have a pro-biotic and prebiotic and use one of those yoghurt drinks. It helps your immune system and there are some reports that it assists during immunotherapy treatment and hence I started then and haven't stopped.
I've cut down on cholesterol but my score on the door was 4 for that a year ago and I guess it will be less this time.
I have done more exercise but haven't for a while mainly I didn't feel great after the last lot of BCG and set myself back after the previous operation and set myself off bleeding again! I will get back to exercising regularly. When I am not laid up as I am at the moment I walk about 3 miles a day to and from the stations at both ends of my journey.
The list above has been since July 2006 - so 30 months of this. That's an Operation every 5 months. A BCG treatment almost every month (24 of them).
It feels to me to have been full on and yet between each set of treatments was a 3month gap before the operation. During Maintenance you had 3 BCGs, followed by 9 weeks in between, then another 3 then the 3 month wait for the operation. It is strange though how it feels you are never free from it and it is great when you can forget it and distract yourself from it.
The amazing thing is that it isn't painful to have bladder cancer. What IS painful are the things they do to you. Painful and uncomfortable. In addition, there's the bit that "messes with your head". That isn't painful but it does contribute towards the way you feel and respond to cancer. If you have a broken leg - you can see it, it is in plaster or some sort of cast, you hobble around on crutches, they take the cast off, you can walk and after a while you forget about it. Your mind doesn't keep wondering if the break in your leg is going to spread across your body or that it is going to get worse, or that they will have to cut your leg off or build you a new leg. In a way that is the added ingredient you don't get with common ailments that you get with cancer.
So - where is all this leading? Well just a retrospective of how I got from there to here and what tomorrow means. I'm hoping it means no more of the above although I imagine it means flexible cystoscopies for a long period to come to follow up and make sure all is OK.
But here is the rub. I should be clear. If I am, I would have been clear officially since November 2007. Yes, 14 months. Unofficially, I would have been clear for almost 18 months. In Bladder Cancer terms, the longer you are clear, the less chance of a recurrence there is. But - and here is the sobering bit - it can recur, it can recur many years later and even though statically I'm on the good side of those stats - age and effectiveness of treatment and recurrence, I did have a high grade tumour in the first place. A clear tomorrow is a major step forward but I still live with the knowledge that I'll need long term observation and follow up and may not be out of it yet!
1 Visit to the Doctors
1 Flexible Cystoscopy & consultation/diagnosis
1 TURBT and biopsies
1 Intravenous Urogram (IVU) or intravenous Pyelogram (IVP)
1 Re-TURBT and Biopsies
6 BCGs
1 Rigid Cystoscopy
6 BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
7 Consultations + visits to GPs when required.
5 Pre-assessments
Of all the procedures, in three cases I was catheterised overnight or longer - the 2 TURBT for 2 nights and the last Rigid Cystoscopy overnight.
A total of 24 BCG, Immunotherapy Treatments - all full dose and each involves the insertion of a small catheter (no local anaesthetic) to instill the BCG and between 24 and 48 hours side effects. For 6 -8 hours after the procedure, the bathroom at home is treated as a hazardous area and is subjected to bleaching and cleaning procedures after passing the BCG out of your bladder.
Of the side effects I had the first few visits to the Hospital saw me get a nasty series of "heat" rashes from the beds and also that both operations and recoveries were on some of the hottest days of the year. The BCGs varied from nothing to complete agony and searing pain to Flu like symptoms, to bones aching and cramps, fevers and chills and anything in between. However, I was told it would be worse than that so in a way I felt that I'd got away mildly as many never go the full course!!
The Silver lining is that we caught my high blood pressure and I am on treatment for that which in a way, much as I hate drugs of any kind, means that I get checked regularly for that and continue to be monitored - which is no bad thing.
Diet - that has changed a bit but I was never one for fast food or anything other than reasonable balanced diet. I now err more towards vegetables and fruit but I'm not freaky about it but did get so at one point about 18 months ago. Other changes. I try every day to have a pro-biotic and prebiotic and use one of those yoghurt drinks. It helps your immune system and there are some reports that it assists during immunotherapy treatment and hence I started then and haven't stopped.
I've cut down on cholesterol but my score on the door was 4 for that a year ago and I guess it will be less this time.
I have done more exercise but haven't for a while mainly I didn't feel great after the last lot of BCG and set myself back after the previous operation and set myself off bleeding again! I will get back to exercising regularly. When I am not laid up as I am at the moment I walk about 3 miles a day to and from the stations at both ends of my journey.
The list above has been since July 2006 - so 30 months of this. That's an Operation every 5 months. A BCG treatment almost every month (24 of them).
It feels to me to have been full on and yet between each set of treatments was a 3month gap before the operation. During Maintenance you had 3 BCGs, followed by 9 weeks in between, then another 3 then the 3 month wait for the operation. It is strange though how it feels you are never free from it and it is great when you can forget it and distract yourself from it.
The amazing thing is that it isn't painful to have bladder cancer. What IS painful are the things they do to you. Painful and uncomfortable. In addition, there's the bit that "messes with your head". That isn't painful but it does contribute towards the way you feel and respond to cancer. If you have a broken leg - you can see it, it is in plaster or some sort of cast, you hobble around on crutches, they take the cast off, you can walk and after a while you forget about it. Your mind doesn't keep wondering if the break in your leg is going to spread across your body or that it is going to get worse, or that they will have to cut your leg off or build you a new leg. In a way that is the added ingredient you don't get with common ailments that you get with cancer.
So - where is all this leading? Well just a retrospective of how I got from there to here and what tomorrow means. I'm hoping it means no more of the above although I imagine it means flexible cystoscopies for a long period to come to follow up and make sure all is OK.
But here is the rub. I should be clear. If I am, I would have been clear officially since November 2007. Yes, 14 months. Unofficially, I would have been clear for almost 18 months. In Bladder Cancer terms, the longer you are clear, the less chance of a recurrence there is. But - and here is the sobering bit - it can recur, it can recur many years later and even though statically I'm on the good side of those stats - age and effectiveness of treatment and recurrence, I did have a high grade tumour in the first place. A clear tomorrow is a major step forward but I still live with the knowledge that I'll need long term observation and follow up and may not be out of it yet!
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