Yes, only an hour to go and I'm off on holiday (vacation) for the next two weeks - fantastic! There is a celebration in the house tomorrow - someone is 50 and it isn't me :-) So we will have a party running almost all day.
As a celebration of making it through the 6 BCGs I have put a bottle of Champagne in the fridge with the intention of marking the end of this year's treatments.
My daughters and I will be preparing the house and the food from early tomorrow and I am sure that we will have a great day with family and friends. If there is no blog tomorrow - then you'll know why.
Friday, December 15, 2006
Strange old night
Yes that was strange. I'd been out for a few hours and just couldn't get to sleep. Nothing particularly on my mind just couldn't sleep hence the late blogs and conversations with the US.
Anyway, it is my last day at work today and I then finish for Christmas. I can take a few weeks off, the treatment is behind me and I can concentrate on other things for a while. I might even take a break from blogging for the odd day
Anyway, it is my last day at work today and I then finish for Christmas. I can take a few weeks off, the treatment is behind me and I can concentrate on other things for a while. I might even take a break from blogging for the odd day
Learning a New Language
Yes - it IS going to be a long night - I am wide awake at 2 am. I just had a chat online with a buddy in San Francisco and it occurred to me that there is a whole new language to learn when it comes to bladder cancer. I was looking on the bladder cafe web site and the contributors regularly rattle on about grade 2 tumours, invasive, TCC etc. It takes a while to get exactly what everyone is talking about.
Given a little time it is easy. TURBT sometimes TUR = Transurethral Resection of a bladder tumour. CIS = Carcinoma in Situ and so on.
I will get around to pulling together a glossary of terms as otherwise no one is going to know what is going on. The problem also is that a TURBT is specific to the subject although you can get something similar in Prostate Cancers. So when most people would have heard of a tonsillectomy you really need to find your way around a bladder and all the various stages to understand what is going on. I'll try not to use any buzz words but if I do I will ensure that I explain what they are before hand.
Given a little time it is easy. TURBT sometimes TUR = Transurethral Resection of a bladder tumour. CIS = Carcinoma in Situ and so on.
I will get around to pulling together a glossary of terms as otherwise no one is going to know what is going on. The problem also is that a TURBT is specific to the subject although you can get something similar in Prostate Cancers. So when most people would have heard of a tonsillectomy you really need to find your way around a bladder and all the various stages to understand what is going on. I'll try not to use any buzz words but if I do I will ensure that I explain what they are before hand.
Further Stages of Kübler-Ross Cycle
The normal state is steady
Then comes:
This can be applied to not only grief stricken people (loss of a loved one for example) but also to those who are diagnosed terminally ill, it can equally apply and be used for change in a business context - someone losing their job or their job changing. I think it applies equally well to being diagnosed with a disease like Cancer too. If you read this blog you'll know that I am newly diagnosed and under the first set of treatments. I think that I have come through shock and denial although I'm not sure that denial lasted long enough or whether I had enough time to do that. Anger - well yes but not a long period of this, I have more trouble in small things making me angry (looks like a bit of denial there doesn't it? :-) ). I'm not sure if bargaining comes out of this as it is out of my hands to some extent. I have to do what is right and my Specialist advises me and I take their advice and keep my side of any treatment regime. Testing - this blog is a way of testing and people like my guardian angel drop the odd note back to me to tell me what they read that I said and how they read it (if that makes sense - they may see a hidden meaning or signal and let me know). Acceptance. I am definitely not there yet but I think that you may have to accept a number of different things here:
So a lot to do before you get there but I do think that I am making progress, that I am working my way through but more than all of that and importantly, I feel that I do know that I am going through these phases and I have enough people around me to help me if I get in trouble with any of them.
Then comes:
- Shock - Initial paralysis at hearing the bad news
- Denial - Trying to avoid the inevitable, disbelief
- Anger - frustration and an outpouring of pent up emotions
- Bargaining - Seeking (in vain) for a way out of this
- Testing - trying out different scenarios and solutions
- Acceptance - finally finding a way forward and eventually back to a steady stage again.
This can be applied to not only grief stricken people (loss of a loved one for example) but also to those who are diagnosed terminally ill, it can equally apply and be used for change in a business context - someone losing their job or their job changing. I think it applies equally well to being diagnosed with a disease like Cancer too. If you read this blog you'll know that I am newly diagnosed and under the first set of treatments. I think that I have come through shock and denial although I'm not sure that denial lasted long enough or whether I had enough time to do that. Anger - well yes but not a long period of this, I have more trouble in small things making me angry (looks like a bit of denial there doesn't it? :-) ). I'm not sure if bargaining comes out of this as it is out of my hands to some extent. I have to do what is right and my Specialist advises me and I take their advice and keep my side of any treatment regime. Testing - this blog is a way of testing and people like my guardian angel drop the odd note back to me to tell me what they read that I said and how they read it (if that makes sense - they may see a hidden meaning or signal and let me know). Acceptance. I am definitely not there yet but I think that you may have to accept a number of different things here:
- Accept you have Cancer
- Accept what that means to you and your life
- Accept what that means to your family and friends
- Accept the treatment and the various routes that it could take (good and bad) - this will take some time I think.
- Accept that inevitably you will have this for the rest of your life or be watched over (in and out of Hospitals with things stuck in you) for the rest of your life. I haven't quite got the measure of that yet
- Accept that it isn't a short term fix and you will have to adjust your life etc to live with it
- Accept that it just may kill you - got to get to grips with that - I saw the demons when I was diagnosed and I don't want to go there again.
- Accept that I may not be able to tell some of the people who are nearest and dearest to me my darkest fears and worries as I'll probably hurt them more than any benefit I'll get for off loading those. I'm not sure what I'll do about that. The blog can only go so far, the dark places are very dark indeed and perhaps a trained counsellor or a support group although I don't feel the need for that yet.
So a lot to do before you get there but I do think that I am making progress, that I am working my way through but more than all of that and importantly, I feel that I do know that I am going through these phases and I have enough people around me to help me if I get in trouble with any of them.
Still Awake - Thinking
My guardian angel dropped me a line and as always, made me think differently about the anger I was feeling. Interestingly enough, I know about this and from my Consulting days - especially when undertaking major cultural change or business change, staff can go through one or all of these stages.
It is based on the Kübler-Ross Grief Cycle albeit that no one actually dies. It Has a series of stages:
- Shock
- Denial
- Anger
- Bargaining
- Depression
- Testing
- Acceptance
It is actually quite a complex subject and no one size fits all. Some people get stuck in the stages, some get the stages out of order and flit backwards and forwards between them, some miss out stages altogether. It was (and indeed still is) my job to ensure that staff going through a change at work were mentored through the change and that things like the shock itself was softened, that there was good communication that we could use the bargaining time to get acceptance and buy in and by minimising any time in the depression phase we could make the cycle as short as possible. The reason we were trained in this technique was that some people got to the depression or anger state and just got deeper into them without coming through the cycle. We also had to make the cycle as fast as possible and as manageable as possible as we would inevitably lose production. In the early 90s we were going through massive changes and huge losses of jobs and so we had to be careful about how we communicated, managed and delivered the changes.
Thursday, December 14, 2006
A strange thing to say but
If there was such a thing as a "good" cancer to get it may well be bladder cancer. It is treatable and generally (in men) you can tell pretty quickly whether you have got it. Most of the people going in with symptoms have the earlier presentation that can be surgically removed or can be treated. The response rates are good and so on. There are of course other issues but generally it is one that caught early can be treated and it appears you can have it recur for a long time and keep treating it.
It occurred to me that not all cancers are going to be like that. some of course are just cut out and that is it. Some are far more difficult to detect and by the time they are detected they may be advanced.
I was explaining that I felt I was very lucky to have bladder cancer and to be in a country where it is treatable.
It occurred to me that not all cancers are going to be like that. some of course are just cut out and that is it. Some are far more difficult to detect and by the time they are detected they may be advanced.
I was explaining that I felt I was very lucky to have bladder cancer and to be in a country where it is treatable.
Lunch with a survivor
It was an interesting lunch time today. A friend of mine who has had his Prostate removed at about the same time I was diagnosed is (of course) now cured albeit, he has a long road to recovery. We met some time ago and between us were comparing war stories.
It was quite therapeutic for both of us I hope to be swapping stories and identifying with the emotions you go though. He had some very dark moments indeed. I've not had such massive depressions thank goodness. We both thought it was fun about how angry we could now get and how quickly that anger could come out although we were able to control it. Then there was the evil sense of humour and interestingly enough this one:
Neither of us waits to get consensus anymore, we cannot spend time prevaricating, and so we just go ahead and make plans and people can live with them or not, we are not bothered about having to get complete buy in.
Also another was the area of pleasing yourself and blow what anyone else thinks and finally one that we differed on slightly, he felt he was more compassionate and I felt that I perhaps hadn't stopped to consider that but I probably would be, I'd just not put it to the test. My one which he didn't share was the occasional "lump in the throat" especially in well made films or documentaries - as I said earlier, don't let me watch Bambi - I'd be in bits....
It was a very enjoyable lunch and it is great to meet someone who has been through what you have been through and feels the same as you do.
It was quite therapeutic for both of us I hope to be swapping stories and identifying with the emotions you go though. He had some very dark moments indeed. I've not had such massive depressions thank goodness. We both thought it was fun about how angry we could now get and how quickly that anger could come out although we were able to control it. Then there was the evil sense of humour and interestingly enough this one:
Neither of us waits to get consensus anymore, we cannot spend time prevaricating, and so we just go ahead and make plans and people can live with them or not, we are not bothered about having to get complete buy in.
Also another was the area of pleasing yourself and blow what anyone else thinks and finally one that we differed on slightly, he felt he was more compassionate and I felt that I perhaps hadn't stopped to consider that but I probably would be, I'd just not put it to the test. My one which he didn't share was the occasional "lump in the throat" especially in well made films or documentaries - as I said earlier, don't let me watch Bambi - I'd be in bits....
It was a very enjoyable lunch and it is great to meet someone who has been through what you have been through and feels the same as you do.
Let that be a warning to .............
ME.
So all the fuss and worry about what the "idiot" was doing at work came to not a lot. I made a few calls then called them and it was just a badly worded e-mail, in fact it was a non event really.
So "Warning to Self". Stop, take deep breath, it's not personal, they are not out to get you. Slow down and take it easy. Now I normally do these things and I am normally cool calm and collected so it is obviously something to do with me getting worried about getting back to work, trying too hard to re-make my mark back there or some such thing. So I am warned and ready for the next one. Communicate by phone it is easier better still look them in the whites of their eyes!
Anyway, anger has been managed, sense prevailed and I only got angry on this blog and not elsewhere so that is alright then!
On to the next challenge :-)
So all the fuss and worry about what the "idiot" was doing at work came to not a lot. I made a few calls then called them and it was just a badly worded e-mail, in fact it was a non event really.
So "Warning to Self". Stop, take deep breath, it's not personal, they are not out to get you. Slow down and take it easy. Now I normally do these things and I am normally cool calm and collected so it is obviously something to do with me getting worried about getting back to work, trying too hard to re-make my mark back there or some such thing. So I am warned and ready for the next one. Communicate by phone it is easier better still look them in the whites of their eyes!
Anyway, anger has been managed, sense prevailed and I only got angry on this blog and not elsewhere so that is alright then!
On to the next challenge :-)
Do not read too much into these posts
I use the blog to get things off my chest and occasionally it can look like I'm severely depressed but I'm not really. I don't think I'd post at all if I was that down.
So the blog is about how you feel and the things you think. I can get morose and dark but it doesn't last long as I take out out on the blog here and then it is gone.
So the blog is about how you feel and the things you think. I can get morose and dark but it doesn't last long as I take out out on the blog here and then it is gone.
Thank Goodness only 2 days to go
Then I am on holiday (Vacation). I have plenty to get on with but I have one idiot who obviously wants to get some point across and yet can't say or ask a straight forward question. You probably know the sort of thing that you read and you think; "Hold on, that question is loaded" Well it is like that, the way the questions are worded and phrased and their general ambiguity are ringing alarm bells. I know the answers yet it would probably be best for me to go and do a day or two research. That of course is a waste of time but it may get the point across.
And the moral of the story is? When you have had your life changed you really cannot see the benefit of office politics, transactional analysis and all that psychic mumbo jumbo. Life really is too short.
Just because you're not paranoid doesn't mean they're not out to get you.
And the moral of the story is? When you have had your life changed you really cannot see the benefit of office politics, transactional analysis and all that psychic mumbo jumbo. Life really is too short.
Just because you're not paranoid doesn't mean they're not out to get you.
Wednesday, December 13, 2006
What if I am one of the 30%
The BCG treatment and maintenance appears (depending on where and what you read) to have a 70% chance of working. If you end up being one of the 30% then there is a 50% chance that the next go with BCG will sort it. They are pretty good odds. Of course if you are one of the 30% then you only have a 50/50 at the next go but even so, they aren't bad odds if you think about it. It's not as if you are doing the lottery at about 47,000,000 to 1!
Mind you, I still don't know how I'd feel to be one of the 30%. The best thing would be to be seeing the Urology Nurse again soon after the biopsies are done and be on the Maintenance course. You'd have thought that wouldn't be so but if you get the nod you then go for 3, 6, 12, 18, 24 & 36 month instillations of BCG (you get a course of 3 each time not the 6 like I've just had). Not sure if these go all the way out to year 10 like the US Dr. Lamm protocol. I suppose I'll find out soon enough.
Mind you, I still don't know how I'd feel to be one of the 30%. The best thing would be to be seeing the Urology Nurse again soon after the biopsies are done and be on the Maintenance course. You'd have thought that wouldn't be so but if you get the nod you then go for 3, 6, 12, 18, 24 & 36 month instillations of BCG (you get a course of 3 each time not the 6 like I've just had). Not sure if these go all the way out to year 10 like the US Dr. Lamm protocol. I suppose I'll find out soon enough.
Losing Patience
I do find that I am losing patience with people these days. I suppose that before I'd be quite happy to listen to them and think they were stupid and just get on with it. Now, well, life is too short really! I can hardly believe the utter bollocks people come out with. I've also noticed that I am treated differently which is great fun and could be exploitable. This is going to be interesting. On one hand some people are just being plain stupid and thick (either on purpose or they really are) and on the other they are being patronising and acting as if I have somehow had my brain scraped! Oh the fun of it all. I shall enjoy getting back to work - if they don't sack me for being belligerent that is.
Tuesday, December 12, 2006
I haven't heard this for a while
Whilst in a conversation with an old friend today - "Like pissing razor blades" was muted as an accurate description of one of the side effects.
Yep, I'll go along with that if you don't have some pain killers that is.
Yep, I'll go along with that if you don't have some pain killers that is.
Long old day
I think I'll have to call it a day soon and go downstairs and relax in my chair. I bought myself a recliner chair so that I could relax after treatment and it is great.
I don't know quite why I didn't get much sleep last night and it is the first time I've had to take tablets in the morning to settle things down.
I read something interesting about the treatment and that is that it is now that the Immunotherapy has reached its full potential and is at its height so it is the build up that gets you to this level and the immune system is now doing its bit on its own - hence you don't mess about with it for 3 months then as it carries on working.
Clever stuff.
I don't know quite why I didn't get much sleep last night and it is the first time I've had to take tablets in the morning to settle things down.
I read something interesting about the treatment and that is that it is now that the Immunotherapy has reached its full potential and is at its height so it is the build up that gets you to this level and the immune system is now doing its bit on its own - hence you don't mess about with it for 3 months then as it carries on working.
Clever stuff.
Whoa Calm down Tiger
I think I said earlier you can get some wild mood swings. Logged on to work - a right arse hole message in my inbox. Something I have been saying since I joined, turned around and played back to me as if it were their idea. Coupled that with a conversation I had with them last week and that is in there as well played back to me.
So - do I yell at said s**t for brains or just reproduce the 20 odd memos and say why are you asking me when I've been asking you the same question all the time? Luckily I have gone into calm down mode after explosive mode. The trouble is this would normally not get me this angry I'd be able to treat it with the utter contempt it deserves and move on. These days, I just get really pissed off with people wasting theirs and my time and frankly being stupid.
On the flip side of this mood swings stuff I also need to avoid anything that is sad especially kids in hospitals with horrible diseases etc. Also stupid things on TV can just catch me unawares too. I hope they don't show Bambi over Christmas - I'll be wasted :-)
I also hope when I get back to work not to be too aggressive towards them. Generally when someone comes out with a stupid remark I might look at them a strange way or ask them to repeat themselves until they realise but judging by the anger I've just felt with this, I've got a feeling I may just tell them straight out which way "up" is :-) I could have well lost all my carefully honed people skills. Out of my way Ricky Gervais, let me show you how I run my office :-)
So - do I yell at said s**t for brains or just reproduce the 20 odd memos and say why are you asking me when I've been asking you the same question all the time? Luckily I have gone into calm down mode after explosive mode. The trouble is this would normally not get me this angry I'd be able to treat it with the utter contempt it deserves and move on. These days, I just get really pissed off with people wasting theirs and my time and frankly being stupid.
On the flip side of this mood swings stuff I also need to avoid anything that is sad especially kids in hospitals with horrible diseases etc. Also stupid things on TV can just catch me unawares too. I hope they don't show Bambi over Christmas - I'll be wasted :-)
I also hope when I get back to work not to be too aggressive towards them. Generally when someone comes out with a stupid remark I might look at them a strange way or ask them to repeat themselves until they realise but judging by the anger I've just felt with this, I've got a feeling I may just tell them straight out which way "up" is :-) I could have well lost all my carefully honed people skills. Out of my way Ricky Gervais, let me show you how I run my office :-)
That's Over!!
Perhaps I should be screaming that from the roof tops? Not in my PJs and Dressing Gown - better not :-)
Wow, that is it, all over for now. No disturbed Monday and Tuesdays. I'm looking forward to the end of this week too as it means I can finish work, sort out my office and all those little things I need to get done and then have a relaxing Christmas and New Year.
Wow, that is it, all over for now. No disturbed Monday and Tuesdays. I'm looking forward to the end of this week too as it means I can finish work, sort out my office and all those little things I need to get done and then have a relaxing Christmas and New Year.
9 Weeks
That is what I was told yesterday. Expect the letter to come in in 9 weeks and to be in in 12 weeks to see how the treatment has worked.
Long time to wait isn't it? Mind you, I doubt I'd feel particularly up for going in at the moment after 6 weeks of this.
Long time to wait isn't it? Mind you, I doubt I'd feel particularly up for going in at the moment after 6 weeks of this.
Not the best of nights
That was a pretty bad night. The symptoms were more manageable than before - you get used to them and you manage them but this morning I'm a little bit sore and I only got about 3 hours sleep. I managed a couple of hours into the evening so that may account for it.
I can't say that I should be feeling any worse than normal (whatever normal is) there is no reason I can see. It is quite peculiar I feel quite out of it this morning. I'll let today run its course and see how I get on.
I can't say that I should be feeling any worse than normal (whatever normal is) there is no reason I can see. It is quite peculiar I feel quite out of it this morning. I'll let today run its course and see how I get on.
Monday, December 11, 2006
Tell everyone or keep it to yourself?
My guardian angel - before I was diagnosed told me to tell everyone that I was ill and to share it around as much as possible (or words to that effect). I think that, for me, that has worked and this blog has been great. The blog is good because other people can look too and perhaps get some crumb of comfort from the fact that it isn't "just them".
I'd probably be the sort of person who would share all of this stuff anyway although I hadn't really thought about blogging it, sending out e-mails on my condition would be normal.
I think it would be very bad for me to have just locked myself in and become quiet and non communicative about it. I can't see that it helps a lot as the only opinion you can seek is your own and frankly I still don't trust, even my analytical and intuitive, bits of my brain to come up with all the right or even sensible answers. The phrase "you need to get out more" applies in spades :-)
The only downside I've noticed is the look of concern on some people's faces when they meet you and perhaps I'm not communicating enough about the good things or perhaps I'm not continually reinforcing the message about how well I feel etc.
To answer my own question - do what my guardian angel said and tell as many people as you can and it will make you feel a lot better than bottling it up and keeping it to yourself and your overactive imagination.
I'd probably be the sort of person who would share all of this stuff anyway although I hadn't really thought about blogging it, sending out e-mails on my condition would be normal.
I think it would be very bad for me to have just locked myself in and become quiet and non communicative about it. I can't see that it helps a lot as the only opinion you can seek is your own and frankly I still don't trust, even my analytical and intuitive, bits of my brain to come up with all the right or even sensible answers. The phrase "you need to get out more" applies in spades :-)
The only downside I've noticed is the look of concern on some people's faces when they meet you and perhaps I'm not communicating enough about the good things or perhaps I'm not continually reinforcing the message about how well I feel etc.
To answer my own question - do what my guardian angel said and tell as many people as you can and it will make you feel a lot better than bottling it up and keeping it to yourself and your overactive imagination.
Thoughts on the BCG Treatment
I found the whole set of treatments manageable. The first treatment is a bit of a non event apart from the waiting and the worry about the catheter which really isn't that bad. I'd rather do this than have a blood test and I'd rather have a blood test than a cannula shoved in me so it isn't that bad and I am squeamish.
The lack of side effects at week one was an issue as the side effects at week two were unbelievable, like getting hit by a truck as I tell anyone who cares to listen. The books and even the nurse doesn't really tell you it is like that. My Consultant did. I was told not to drive or fly or attempt anything too ambitious and yet I feel that whilst that applied to the second week, ever since I have been well enough to travel albeit I wouldn't want to go more than say 30 minutes at most from home just in case I needed to find a toilet. Towards the end of each week you get progressively better at this. I have my treatments on Monday that wipes out most of Monday and generally Tuesday morning as well although I have been up and about since the third treatment on a Tuesday I still have minor side effects for the remainder of that day which of course gradually get less and less.
By weeks four and five I was getting into the swing of things and you get into a routine. Shower an hour before, set up the bedroom and bathroom for the coming turning and side effects etc. These little rituals also help to bring about a bit of calm. To start with my whole Monday was wiped out, all I could do on the PC was to play games and let those eat away the time. Now I can do work and add to this blog and do other things because I don't have to worry so much about it. It is still a little concerning of course but it is manageable and soon will be the last one and I can forget about them.
I hope it has worked - I really do. Someone posted (elsewhere) that the level of side effects does not affect how the BCG has worked. Feeling and seeing what it did do - it has done something - it is just the hope that it has done what the Consultant has set out to achieve. If we can get this manageable and able to maintain it I will have got the very best I could have hoped for.
The lack of side effects at week one was an issue as the side effects at week two were unbelievable, like getting hit by a truck as I tell anyone who cares to listen. The books and even the nurse doesn't really tell you it is like that. My Consultant did. I was told not to drive or fly or attempt anything too ambitious and yet I feel that whilst that applied to the second week, ever since I have been well enough to travel albeit I wouldn't want to go more than say 30 minutes at most from home just in case I needed to find a toilet. Towards the end of each week you get progressively better at this. I have my treatments on Monday that wipes out most of Monday and generally Tuesday morning as well although I have been up and about since the third treatment on a Tuesday I still have minor side effects for the remainder of that day which of course gradually get less and less.
By weeks four and five I was getting into the swing of things and you get into a routine. Shower an hour before, set up the bedroom and bathroom for the coming turning and side effects etc. These little rituals also help to bring about a bit of calm. To start with my whole Monday was wiped out, all I could do on the PC was to play games and let those eat away the time. Now I can do work and add to this blog and do other things because I don't have to worry so much about it. It is still a little concerning of course but it is manageable and soon will be the last one and I can forget about them.
I hope it has worked - I really do. Someone posted (elsewhere) that the level of side effects does not affect how the BCG has worked. Feeling and seeing what it did do - it has done something - it is just the hope that it has done what the Consultant has set out to achieve. If we can get this manageable and able to maintain it I will have got the very best I could have hoped for.
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