Fate Versus Lifestyle Versus Did I Deserve it?

I wrote this earlier and didn't publish it but then thought that the blog really ought to pick up on my "mindset" no matter what state it is in/ I'm a bit strange anyway - you just have to look at my collection of off the wall French film noir to see that. I think obliquely and laterally and sometimes if you are not on "my wavelength" or on the particular lateral thread I am thinking of at the time I say or write something, you will not get it and wonder why I am not under a Care in the Community Order. Be that as it may - it is probably worth publishing the stuff below so you get to see how your brain can drift off and think of the most absurd things.



This has been rattling around my head this afternoon. The earlier post where 25% of people felt that it was fate. I tend to sit on the 'it was my lifestyle' side of the fence and whilst I was considering that two things sprung to mind:

1. This time last year I felt that the time had come to change my lifestyle. I had come to a point where I had thought that all the harm I must have done to my body ought to be stopped, reversed whilst there was still a chance and I did do something about it. However when I look back and think how many years I thrashed my body and all the hours I worked and the drinking and smoking etc then there was bound to be a reaction. I had decided that as I wasn't getting any younger I ought to cool it. I was obviously far too late to do that. However, I have had a massive change in lifestyle and I feel better for it - I've not gone Vegan but I am just eating sensibly, regularly, not fasting or feasting (something I used to do regularly - I could 'not eat' for days and not sleep either). It all catches up with you.
2. The other thing I thought about was the "Did I deserve it?" argument and that is a bit of a strange one. I go back to the early days of Aids and the sorts of things that people said then and wonder whether anyone "deserved it". I perhaps brought it on myself and that cannot be denied so I think the answer actually is yes, I did deserve it. I knew some years back what smoking could do and I should have given up. The argument on whether we do enough to discourage smoking, how we argue that you shouldn't smoke in adverts and tax and other things can go on for ever and are subject for another day I think. I do reckon that I knew enough about things, had sufficient advice and could have made an informed decision. What I am certain about though is that smoking is addictive beyond a doubt and it is not easy to give up and stay given up. Someone telling you that you have Cancer is a very compelling reason to stay stopped though. On a last thought on this for the time being. All of my parent's generation and their parents smoked and it was in all the films and on TV it just beggars belief how we are reaping the whirlwind of that now not just smokers but all the passive smokers and those who were abused because they lived in the homes of smokers.

This all goes darker and deeper and is a real guilt trip for ex-smokers. Having brought this on myself and up to a point accepting that I injured myself I now have to face up to the possibility of actually harming other people - that really really does hurt and causes many of the sleepless nights and so much of the guilt isn't that I have Cancer, it is that I may have given it to anyone else. I can live with the former - I'm not sure I could live with the other.

It also occurred to me that when I was a child that I lived in a smoker's house and all my relatives smoked and everyone on the trains and buses smoked and so was it me or was it them.

And so, on and on you could go about this if you wanted. All these things play around in your brain whether you want them to or not. Then you start to consider the various facts that many people who get Lung Cancer (for example) have never smoked in their lives and you can then really start to get your mind swimming.

This is one of those rambling, nonsensical posts that will no doubt hit this blog from time to time. It doesn't mean anything really. It highlights the guilt you have as a "Cancer victim" and the guilt you then feel to others as an ex-smoker. It then goes on to look at your own victimisation as a child and these things go round and around in your head for hours at a time. I doubt there is anyone who just looks at it as an isolated thing at all.

I'm going to stop here as no matter what I write, or what I believe, this particular subject will just go around in circles. I guess it will resolve itself and each of the worries will find an answer sooner or later. Perhaps some never get answered or get answered at the last minute - who knows.

Today has gone a bit faster

At least today is going faster than yesterday - not that I am wishing time away you understand. I suppose because I now have some chunks of work to get on with helps.

Still a couple of hours to go but I reckon they'll disappear pretty quickly now.

I also hate Parkinson's Law so perhaps that is another reason that I find myself bored sometimes. Parkinson's Law is where you fill the available time with the work you have available. I tend to do the work and complete it as soon as I can. It can lead to gaps in work but I can fill those gaps with planning for the next lot.

Education

Perhaps that would help - you despair when you read this sort of stuff though from today's BBC Health section CLICK HERE.

Apparently 25% of people think that Cancer is down to fate - Oh please.....

Exercise Equipment

I am waiting for my Exercise Equipment to come. I hope that it will ensure that I make it a discipline. Yesterday, I was full of good intentions about going out for a walk and never got around to it. At least I can have the walk come to me this way.

Most of the household are back at work or school today so it should be a bit easier than yesterday at work. I hope it also goes a bit faster.

Is it the Longest Day?

Phew,

how long has today been - it feels like I have been sat here for days not hours. It is always the same on your first day back at work but this is ridiculous, its as if time has been somehow slowed down on purpose.

There is still another 45 minutes to go too. Blow this working for a living lark!

Loads more junk and reminders

Well the office is beginning to look a bit neater. I really didn't do a lot after the operations and so things got left in piles and, with the best will in the world, I really didn't feel up to anything like filing, throwing out and reading loads of stuff.

I'm surprised how much stuff there is accumulated on my desk and on tables and shelves. The recycling man is likely to get a hernia lifting all of this.

I keep finding the odd Hospital letter but at least I can get all that lot filed in a single place now too.

Having a Clear Up

A bit spooky - I just found last year's diary - the marker is still in the first week of July - after that there is not an entry at all - before that most days are completed with appointments etc!

I wonder what else I'll find in my piles of unfiled stuff?

Back to Work

It was hard work getting the head off the pillow this morning. The alarms went off on time and in sequence but the mind and the body didn't want to get out of their warm resting place.

Finally pulled myself around and walked the few yards into my office. A conference call in a few minutes should start the system back to normal and get things rolling.

I can't say that I am filled with my usual enthusiasm for the job at the moment. A few problems and some excitement will soon blow away the cobwebs.

Anti Climax

It always is after Christmas and you see in the New Year. What do you do New Year's Day - the same as you probably did last year or a few days ago, potter around the house, wash the car, clean up a room... Things go on just the same, perhaps I was expecting a huge adventure? Better not hold my breath then :-)

Goodbye 2006

2006 - Am I glad to see the end of you!

What a year, what a ride - no more of the same for 2007 please.

2007 will have to be better - I haven't thought of any New Year's Resolutions excepting the getting fit, eating better and looking after myself a bit more than I perhaps have in the past.

Happy New Year to you all!

Late Again

A sort of pattern emerging although tonight I was coughing and have just gone and sorted out that age old remedy some hot honey, lemon and a shot of brandy to see if I can stop this incessant tickle in my throat.

Whilst seeing if that is working and in an effort not to wake up the remainder of the house I have got myself into my office for a short while.

New Year's Eve - 2007 is going to be a very different year. last year things were going in a totally different direction on many fronts. This year I am going to be considering all sorts of options and making decisions on those - gone will be the snap decisions of years before, lots of planning will be needed to make sure that I work around the Hospital dates and treatments but that I can still keep as normal a life as possible. I don't think the last point will be achievable but I'll give it a go anyway.

Only time will tell if everything I have will still exist in the coming months. I foresee somethings not surviving the changes that have happened or are happening. I'm not going to predict whether it will be work, social, family or other at the moment but I just have this feeling that I'm not only going to have Bladder Cancer on my CV of traumatic life incidents by the same time next year - something else will be added to the list.

It sounds pessimistic, I suppose it probably is, but perhaps inevitable as well. In the back of my mind is the very real possibility of telling someone that "life is too short" and walking away from something - could be work (I've done that before) it could be something I'm involved in socially, it could be something worse - I'll get to that when I get there.

Honey, Lemon and Brandy are sort of clearing the throat and almost finished so I'll finish for now. I suppose I had better work on some New Year's Resolutions!

It was a long night

I think I finally fell asleep at about 3. Damn brain will go and do this occasionally and go off down some long and complicated set of "What if" scenarios. There is no easy way to stop it doing this. Nothing get sorted out of course as all of these scenarios can only be played out if certain conditions are met and then certain other conditions are met. It is no use second guessing what may happen as it hasn't happened - just try and tell your brain that when you've got Cancer or anything else though!

Living and Survival

I have read a number of accounts of people with various Cancers and the words surviving and living are used with different emphasis throughout.

Surviving in my view is staring death in the face and not dying. However some people survive a number of years. I tend to think of myself as living with the condition and hoping for remission or cure or whatever. I wouldn't consider that survival, I'd call that living.

It really is far too late on a Friday night to even be thinking like this but this is the sort of time when the brain gets active and you know you are in for a long sleepless night!

Failing to meet my expectations

Not me - this is other people. You come out of treatment changed and you expect a lot more of people, you've changed, why haven't they? You set high expectations, perhaps too high and the trouble is they will always fail to meet your ideals.

I can't tell you why I expect more from those around me but I do. I expect people to understand the problems I have been through, the pain, the trauma and to treat me differently. I'm guessing that this is where the problem lies. I've spent ages dumbing down and making light of what I have, now I am expecting most people to realise that actually it was serious and I'm not getting the balance right at all. I always say I'm fine, I'm OK and I am now, I wasn't earlier on - only now do I realise just how much I've been through these past 5 months - the mind must just blank it out.

The real issue is that I am finding it hard to realise that actually I am the only person who has changed and all those around me are the same as before - why should they have changed, there was nothing life changing in their lives. For me, things will never be the same again and so outlook, expectations and time all matter differently to me than to anyone who knew me before. I have a view that I might not be here too long and so you (or I) ought to do something now rather than put it off. I want to fit in more and yet no one else does. I can imagine this is going to lead to some interesting situations as things progress as typically I wouldn't kick up a stink about this and I haven't so far but sooner or later I'm bound to pose the question.

I notice that I really do give stick to suppliers and others when I'm dealing with them on the phone or in correspondence so I imagine it may be only a short time before everyone else gets the "benefit of my thinking".

Tiredness

It can only be that since Christmas Eve we have not stopped having people here, going out and so on. Additionally I have been exercising for about an hour each time which I have not been used to for 5 months or so.

It was Christmas Day that marked the 5th month Anniversary of the first operation. It doesn't seem that short a period at all - I suppose because so much has happened. I've enjoyed Christmas this year more because I didn't think I'd be here.

Today I've just got some odd paperwork to do, the family are out at the sales and I've had a good sleep. I feel a bit tired but not fatigued. I'll see how today pans out.

That Strange Feeling

I reckon that it is one of those things you get that plays on your mind.

"If I get to survive the first one maybe there is another one lined up to get me" coupled with that is "If he wants me that bad...."
"Something else is wrong with me"
"I wonder if it is coming back again"

I can't say that it is worrying me a lot it is just one of those nagging little things at the back of your mind and one of the things you have to deal with.

The slightest twinge or ache gets you worried about what it could be. Having been relatively healthy for 30 years I've gone from being someone who rarely worried about my health to a border line hypercondriac (well not quite) but I'm aware of my body and how I feel all the time.

I don't get it so much now but earlier on in the very early days before the operation and before I knew better the little voices would be there with stuff like "You won't be there for your children when they need you", "You'll predecease your parents" and that sort of stuff. It goes with the territory and its part of the disease. You just have to learn to put the thoughts as far away as possible as that isn't the present situation - nor is it likely to be. The Brain though is a complicated thing and it can be a nuisance having a questioning mind.

Again very tired today

Well Yesterday actually. Absolutely knackered and I slept for 10 hours. I wonder if I am ailing for something? Hope not I could do without anything else going wrong in 2006 and for a good start to 2007. I have a horrible feeling that there is something else wrong with me - perhaps just being a bit pessimistic there but whilst I still feel well something is nagging at the back of my mind about this tiredness.

Ten Hours

Sleep that is - slept like a log only just got up but feel better for it. Off out in a few minutes - at least I don't have to do anything myself today apart from drive there.

Almost overdone it

Phew - what is it? 1:10 in the morning and we have just cleared away from the party. We kicked it off with a walk yesterday afternoon lasting an hour and just went on from there with lots of food, booze and party games! I have to say though I really am knackered. Wife told me to go to bed ages ago but it isn't fair but now I have helped tidy up, I am really feeling it. She is tidying up downstairs, just the last few bits. Out again tomorrow and I hope that as a guest all I need to do is eat, drink and be my amusing self! Any more work than that and I'll be out of it! At least I'll get Friday off.

I caught a little bit of TV magic today - "Goodbye Mr. Tom" I think it was. Blow me if I wasn't almost reduced to tears by the last 30 minutes of it. I can honestly say that I don't get moved by stories like this normally, no matter how well acted but it just hit a chord today I think.

Off to bed now - should sleep like the proverbial log!

They took a lot more out of me than I thought

I have started to notice that my level of physical fitness is nowhere near what it was before the operations and treatment, I was breathing hard walking up the hill home last night. I feel really well and so it is a bit of a surprise that I am weaker than I feel or not as fit as my brain keeps telling me I am. Going for a walk is not a problem and I have enjoyed that recently but I am thinking about how I now go on to increase my level of fitness as it is obvious that there is a wide gap between what I think I can do and what I can actually achieve.

I did take things very easy after both operations and I have also been extremely careful not to do anything to screw up the treatment etc., that tends to mean being quite sedentary and you certainly don't want to do too much after a TURBT as you can set yourself bleeding again. That leads to sitting or lying down for long periods of time and not burning off the food which, if I think about it, probably grew in quantity although I have not been eating fattening things.

Diet alone isn't going to do this I need to start working on my fitness levels too.

Tired

Again, it is creeping up on me. A long day yesterday and I was out for a walk this morning, with friends at lunchtime and then at a family do this evening and I am really feeling tired. OK It's late now but I've gone past the sleepy stage. I'll need to remember that I will probably be absolutely knackered once I start back at work again. A big difference working from home and travelling and working!

A Change is in the air

I think that yesterday was the beginning of a change of direction perhaps there was a shift of the way I am with people. I fended off the ignorance of my condition and did that nicely. I was a lot more withdrawn and quiet than I normally am I noticed. I did keep myself to myself a lot more than normal. I was very tired by the end of the day. Something is nagging away at the back of my mind about change or the need for it. I can't tell if that means radical or gradual change at the moment.

Sanctuary

Escaped for 5 minutes to my office. Great day but I am very tired. I'll go and get some fresh air before the evening rush!

This is fun

Yes indeed.

Just tried on a pair of trousers and shot the button across the room. Another pair on at the moment straining - hope they last the night! I've been wearing jogging bottom trousers for months now. Oh dear - this does mean serious dieting if I can only squeeze into one pair :-(

Christmas Eve

Earlier in the year I didn't think I'd make this one and if I had of, I may not have made the next, such was the fear and lack of knowledge about my condition early on. I know differently now and I know that things can change too. So today I am doing what I normally do on Christmas Eve. I cook and prepare and then go to a party in the evening which we have been to for the past 16 years!

Today, I had a good night's sleep and feel a lot better than I have done for the past few days. Not too tired. I'll be cooking and glazing the Ham and preparing the Vegetables for tomorrow. If I get the chance then I'll tinker about with some prep for the gravy too. I can have the Christmas CDs playing around the house, whack on the scented candles and have a few slurps of red wine or perhaps a beer whilst I am cooking. All this gets me into the spirit of the event and then we have the party later on which is a great evening with our friends and all the children all grew up together and get on fine which is great.

Wishing you a Merry Christmas

Easily worn out

I must be out of condition, the past few days have seen me really tired at the end of the day. I've been doing a lot more than usual and most of that has been physical work. Diet starts the day after Boxing Day - and more exercise too.

Looking forward to the next few days

I'm going to be with my family and we are going to be doing things together, going to parties, having the wider family around on Christmas Day and for the next 4 or 5 days we will be able to spend time with each other. We do tend to live in the same house but pass like ships in the night sometimes. It will be quite a good way to end of a pretty poor year for me and to look forward to a better year in 2007.

Comments and an Interesting Link

I am grateful to Lynne (see post below) who sent a really interesting link about the way statistics can be interpreted. I have often found the various figures thrown around difficult to interpret and, of course, everyone is different, has different health issues and so on. The article HERE is extremely good at setting out a positive version of what is shown. So once again thanks Lynne for that.

On the subject of comments on the blog site, it is good to receive these be they supportive, informative or both.

A Bit More Anger Management

I was reading some other posts on a forum and some people were very angry especially as they had some pretty radical surgery. I can understand that. I imagine though that their anger will be tempered somewhat later on, once the pain and discomfort and inconvenience (in more ways than one) have subsided. The reason it will subside is that it really is a lot better than being dead. It really is.

I've said that cancers are survivable and that huge steps now make it possible to survive things like this and so I am being bought time and so is everyone else who has treatment whether radical or not. I think when you work that out then you can control the anger from the absolute rage you get very early on to the stupid stuff I was banging on about earlier.

The trouble with much of this is you probably have to come to terms with this on your own unless you happen to be able to talk to someone who has gone through something similar.. I suppose I am lucky that I know two guys who have both had Prostate Cancer recently and their experiences whilst not exactly the same are good to get a bounce off and to share emotions. Both of them are now cured which is great news. As I said before mine doesn't go away that easily but is able to be managed and maintained.

I could occasionally do with a sound deadened room and a box full of crockery to smash :-)

The Short Fuse

A bit early in the morning to be "Mr. Angry" but the slightest thing can set you off sometimes . Someone hasn't cleared their mess which has been lying around for a day or two, tripping over some discarded trainers left (aren't they always) in the middle of the hall and so on. Sometimes the smallest trigger and it's "all aimed at me". Well it probably isn't but it feels like it is sometimes.

It never gets to much as I can escape to my office and keep out of the way. It just amazes me that I get wound up by such trivial things. I'll be fine now for the rest of the day no doubt. I never used to be so easily "windupable". It obviously comes with the territory. I tend to hide my anger and disappear. Occasionally there will be a few words said.

I reckon I am no longer angry that I got Cancer or that it was me; that seemed to pass pretty quickly you have to accept that it is your lot. There is something more selfish in these little outbursts I find. It really isn't what I am like although I tend to have a sharp tongue at work and not suffer fools gladly.

Maybe it is only me who has changed and maybe only I find that I want (should) be treated differently? Perhaps there is a need to make the best use of my time remaining on the planet (you DO think this way even with a survivable one - I mean what happens if you don't respond to treatment?). I cannot see that those who do not have a life threatening disease can possibly see it that way. I think you do look differently, you've seen the place where you are heading, you firmly believe that you are going to get there a lot faster than you wanted to and your outlook has changed, those around you will not have the clarity of thinking nor will they be operating under the same rules and outlook as you.

Christmas Notes

I'm getting a lot of supportive notes and the odd person admitting to having had or still having Cancer - so that will allow me to have a chat with people I know about things next year. It still surprises me how many people look for cures and full recovery and so on. I am getting to the point that it no longer bothers me and I am now quite happy to explain the situation. I still haven't got to an "Elevator Pitch" to say all I need to say in about 60 seconds - I'm sure I will perfect that with time.

Appears to be gone

That was a strange episode yesterday, I don't have too many of the symptoms left this morning, I'm up early and raring to go as usual. I was due to go out last night for a few beers which I had to cancel which was a bit of a shame.

Strange - Flu now gone

How strange is this? I got up this morning got to my desk and felt really tired and all I wanted to do was go to sleep. I've spent most of the day collapsed in a chair and decided to have a few paracetamol this evening and I feel fine again now. Hopefully that is it. A friend reckoned it is something that is going around and lasts anywhere between a day and a week!

Great - Flu!

Just what I needed. I was alright until about 9 this morning and suddenly I felt really awful. Been lazing around all day with some sort of mild Flu symptoms but the worst bit is I just don't feel like doing anything at all. It is too long ago since the treatment to be that. Its bound to be the usual thing, stop work and get a cold!

Everyone is home for the holidays

This should be interesting. Everyone is home and I am normally stuck in the house on my own for hours on end - I wonder what the dynamics of this will be? I'm the only one up at the moment and all is quiet - let's hope it stays that way

What on Earth am I doing here clock watching?

I just caught myself at it! What an idiot :-) I have just been working away cleaning up some files and sitting at my PC and thinking - "roll on 5:30, I can pop downstairs and relax" Then I looked up at the clock and thought "Doh! I'm on holiday this week - what an utter wally!"

Maybe they took my brain out when they operated :-)

Why do I keep doing this to myself?

The trouble with looking stuff up on the web and then reading it is, occasionally, you can take it out of context, don't understand what it is actually saying, or be skilled enough to read exactly what it is getting at.

There is a great deal of stuff out there and I come across new bits of information all the time. What I did today was to follow someone's link to a presentation which was a little depressing as it has figures that looked, to me, far more pessimistic than I'd been led to believe the success rate was for BCG treatment. I certainly don't like the idea of "highly likely" tumour recurrences - that would put me off - but apparently that does happen a lot. I'm kind of hoping that I'll get maintenance but even that doesn't rule out getting more tumours.

The other problem is how do you interpret the statistics - they are probably normalised somehow but who is actually "normal"?

So - try not to do too much of this without putting it in perspective. I do have to admit though that having read this latest one I feel quite down. That won't last longer than an hour or so and I'll be alright again but it can be a shock to the system to read facts and figures. You do need to find out the data behind it and also read some of the things like sample size to start to realise that some is good science and the other stuff, due to the small sample, could be out by a long way.

Perspectives

I was out this morning and talking to an old friend who has to have heart surgery. It was an interesting conversation as the worry is that it is 4 months to get the angioplasty and "I could drop dead tomorrow!" So one of the things he is doing is sorting out all the "dead" things in a "Dead File" - who to contact, what bank accounts and insurances are held where and so on. That brings it home to you having to sort these tings out. I have most of my stuff well organised but I don't have a dead file yet. It wouldn't be a bad thing to make sure that everything was in order and available rather than trying to sift through my office and find it all.

Bit of a sobering thought. I guess if I did it next year as a project it may be useful - not that I am planning on doing anything that would need it but just in case of course :-)

A Real Treat

For the past 6 Mondays I have missed my regular meeting with a bunch of very good friends. So tonight it was brilliant to meet up and have a beer before Christmas and a catch up of all the things that have happened over the past 6 weeks. We put many things to rights of course and once all the problems of the World had been resolved, we went on to discuss the finer points of politics, religion and some of the simpler issues. We had some fun discussing the interesting application methods of my recent therapy (as blokes are inclined to do) of course when it got to anything that may be eye watering or even slightly "below the belt" they gave up on that! :-)

So nice to get out and meet up with my friends again - what a relief to still be able to drink. The only problem is my clothes stink of cigarette smoke - yuk! OK I know I used to but suddenly I am really very sensitive to it. I noticed it with people smoking outside the Hospital - it really makes me feel quite ill these days.

I am off again tomorrow resolving someone's PC problems and I have now managed to track down some legacy equipment for the other problem I inherited this morning. That is my lot for today, I've done more today on my holiday than I would have done if I'd gone to work!! I must be doing something wrong...

A different sort of Monday

Normally I'd be lying down and getting ready for the side effects of my BCG treatment but that finished last Monday. It has been strange today, almost as if something was missing :-) Really though, I don't miss it.

I am meant to be on holiday, so far I've fixed three PCs today and I've another to do tomorrow! None of them mine I hasten to add. Trouble is I'm not really a PC technician - I know about it of course but that is about all.

Glossary

Rather Than re-invent the wheel (I probably could but it may not be round or circular) here is a list of sites that have a glossary of terms that may be of use:

From MedicineNet

M D Anderson Center

From the Bladder Cancer Web Cafe

A brief set from the latter site:

TCC =transitional cell carcinoma--most common form of bladder cancer
TUR= transurethral resection--minimally invasive surgery performed via the urethra, also known as TURBT-transurethral resection bladder tumor
IVP= intravenous pyelogram--test for checking the kidneys and ureters
CYSTO =cystoscopy, inspection of the bladder with a lighted instrument.
RESECTION =(surgically) cutting out.
CIS =carcinoma in situ (flat tumor)
BCG=-Bacillus Calmette-Guerin -immunotherapy for superficial Bladder Cancer
TURB, TURP = TransUrethral Resection of the Bladder or Prostate
RC = radical cystecomy (surgical removal of the bladder and prostate in men, bladder and reproductive organs in women)
MRI= magnetic resonance imaging, diagnostic test
CT= computerized tomography, diagnostic test

End of Treatment and a difficult question

Has the Treatment worked?

Difficult - I am not going to know until late March at the earliest. I'm not sure that my feeling well and feeling great actually means that much, it may be a state of mind but has no basis in fact I think.

So it is really difficult to answer and again if you think about it you'd expect a treatment to work pretty quickly especially as you have finished the course.

I have to explain both the above of course so that people understand that whilst I feel well, the treatment doesn't really kick in until about now and that I have the anxiety of three months to wait until I get to find the results of this work.

I'll start exercising as soon as I get into shape

I have started doing a lot more now. We are going out every Sunday for a family walk and I am beginning to get out and about a bit more. It is actually quite difficult to put a regular period of time aside for exercise as I often find that I work away from home or I am travelling. I think I am going to start with taking 30 minutes walk each day and see where that leads.

I am blessed with having the countryside just 5 minutes away and a large choice of footpaths and bridleways so at least I won't be trudging around built up areas.

Just realised something

I suppose some people must have a real problem with people who have cancer either from some past experience or perhaps not knowing enough.

Why do I say that? Well, I have had to cancel all sorts of engagements and meetings and I have always sent apology notes explaining why I cannot attend and giving a very brief update of where I am now and how I hope to attend again in the New Year. Not one person has dropped me a line back acknowledging that I have sent a note or apologised, asking me how I am or anything like it yet they still send the invites. I'm not particularly worried about that but it crossed my mind this morning when I saw an invite to a meeting and it can only have been last week I wrote and told him that I would make January onwards.

There's none so queer as folk (North Country Saying)

Big day today

My wife is 49 years and 365 days today. My parents and my brother and his family are making a long journey down to be with us, later more friends will arrive and I thought I'd better blog now as I won't have time during the day.

I hope everyone concentrates on the birthday and not how I am. I imagine for those around me it must be pretty tedious for me to always be the centre of attention. Right off to blow up some balloons, get breakfast on for everyone and generally get myself prepared for non stop catering.

Set E-Mail to auto respond

Telephone diverted, e-mail "not in office" auto responder on, I'm outta here!

Demob happy

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.

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

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.

Further Stages of Kübler-Ross Cycle

The normal state is steady

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.

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.

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.

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 :-)

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.

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.

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.

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.

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.

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.

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 :-)

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.

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.

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.

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.

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.

Now to learn to live with this going forward

So the Treatment is over and my bladder has been scraped, bruised, battered (not like the fish batter), and finally has been in contact with live BCG. And that is after it had Cancer. I'm beginning to feel very sorry for this poor little thing :-)

Anyway, from this point onwards, I now have to work with living with it - Cancer that is. Whatever the outcome of the treatment and that won't be know for 3 + months there are some things that most (if not all) cancers have in common and that is that they can come back. It is quite frequent in bladder cancer to find that a tumour will come back and that it will have to be scraped away again. It also means that I'll be in and out of Hospital a lot for the foreseeable future as they need to check up regularly and I may also end up on a regular maintenance of BCG (if I am lucky) so my next steps are to settle down and get back to "normal" and to live with these things. I'm guessing that everyone will have to do this and the Cancer Research site gives some good pointers about this on their site.

You go through just about all possible emotions and personality types. Some will cope with them differently and it will take different times to do so. It will be interesting now that I will get some more time to reflect on this what I am going to make of it.

A friend of mine told me this was going to be like a Roller Coaster Ride. Once you were strapped in there was NO WAY you could get off the Roller Coaster, you had to go where it took you and there were going to be bits you liked and bits you hated, sudden changes in direction, loop the loops, dark places, water splashes (I put that in here I can't think what that would allude to!) and so on. You could only get off the Roller Coaster when it had stopped and it was safe to do so.

It feels like I have just completed one circuit and the carriages have pulled into the station. I want to get out but I've been told to stay on board. I have to wait and it takes time to fill all the carriages but I know that soon I'll be on my way again. I should be a lot better this time - I know what to expect (or I think I do). I'm more knowledgeable about what is going on and I can learn to tackle the bends and loops easier. I can even begin to enjoy some bits of the ride and occasionally we could get switched to a quieter length of track altogether. I'm on the quiet stretch now, there are no high speed bends, no loop the loops and the dark places are few and far between. I can see the scenery now, everything looks fine and nothing is blurred. I have to stay on the quiet track for another 3 months and then I'll find out which track they want me on next.

I think I'd be very disappointed if this treatment didn't work this time. I need to build myself towards getting that news in a way that keeps me positively focused on sorting this out yet realistic enough to realise that I shouldn't expect this to go away. It will be interesting to see how I can do that in the coming months.

6th and Last Treatment

Of this session that is. It is the morning before the last treatment. I slept well but I had a good day yesterday which probably helped.

Once today is out of the way then I have three months, a quarter of a year, to wait to go into Hospital and have the biopsy operation and I suppose two or three weeks after that to hear the results. It seems an awfully long time but perhaps I can use it to normalise my life, it having been far from normal for the last 5 months. Perhaps I'll be able to do some reflecting on things as opposed to just having it happen to me, who knows?

Yesterday was good. Many people worried about me but also very pleased to see how well I looked. We had a great Christmas Lunch and as usual a table of great people with whom we had a lot of laughs. On arrival home, the girls and I lit the fire and sat down and watched Oliver and MIB II so a good day topped off well too.

The Trouble With Finding Out More....

Is that you get to read things that you would rather not have done. You get to see people far worse off than you are which cruelly gives you a lift but it is the long term statistics that get you. I am a complete newbie at this - 5 months since my first symptoms. Some people have had this 20 years or more and it is quite common for them to have recurrence of tumours; have a few years clear and then have to go back in again.

It could be that those who don't have this problem, those that have no recurrence just never write into to these online forums (I suppose they don't have a need to). I was also somewhat horrified to find out that CIS (Carcinoma in Situ) which is looked at in other Cancers as quite treatable is in bladder cancer quite treatable but also considered a very aggressive form. If you look at Insurance cover it states that you cannot get a pay out on CIS. So I suppose you also get conflicting information you need to sift out.

The mortality rate for CIS is good and dependant on what you read the treatment I am on now is good in 50 to 80% of cases. I guess the worst bit now is going to be waiting for 3 months to see if it worked.

So what else is wrong with finding out more about your own disease? It makes you a real bore :-) I am out today at a Christmas meal with about 100 or more people, I hope that I don't become a bore doing my "Yes I am feeling well but I won't know until next year", "No I will probably not be cured but they can control this for life for me". Perhaps I'll just go and prop the bar up for a few hours instead!!

More Information

A trawl through the Internet brings many sites of interest and a few you'd really wish you had not seen.

Here are a few worth looking at to find out what this is all about.

Click Here for the Cancer Backup Site
Click Here for the Cancer research Site - you can find out just about anything on this site
Click Here for the Bladder Cancer Web Cafe
Click Here for some more on a fact sheet

There are more like this but the basics are available to run through.

Almost Looking Forward to Monday

Strange but true. Last treatment (for the moment) and I'm almost wanting to get there and get it over and done with. I think I'll give a miss to the wag who reckons that I shouldn't take the pain killers and everything so that I can really feel that it is working. Mmm, thanks for that bit of advice but I choose to ignore it :-)

I'm feeling a lot better today, last week was a dark week for some reason. Anyway, just banged out close to 1000 e-cards this morning and now need to finish off the snail mail ones and that will be me done this Christmas. All cards done, all presents done and wrapped up. Cool!

End the week on an up beat note

I have a guardian angel who reads my blogs and picks up when I'm feeling a bit down in the mouth and drops me a little note to cheer me up which on a murky old Friday night has just happened.

I think I can put this week behind me now and move on - I've got things to do this weekend and next, I'm going out and meeting people and I'm going to have a good time come what may!

I'm really grateful for those little pick me ups I get.

Snake Oil

I was amazed how many "Snake Oil" sales people cash in on people's woes, despair and the downright terror you get with Cancer.

All sorts of stuff is being plied as a cure or some sort of help. Call me a cynic but I think my specialist would have told me if ground bat's droppings were the thing to be on? I suppose that it may just be me who finds it offensive to take advantage of anyone like this yet you can find this sort of stuff through a search on the Internet. I like the ones that are Scientifically proven and yet have some old Doris from Wisconsin telling you how it cured her as the single source of the miracle of the slightly dodgy stuff they bang out. Judging by the price of this stuff, it would be cheaper to buy a gold bar and swallow it - it would probably do you more good too!

Whinge over for the moment :-) Have a nice day now!

And another one

Who thought that it was hoped that my medical problems were behind me now. I suppose it is only natural for people to think that way and I read some things about other cancers these days and don't like what I read so I'd probably not understand someone else's condition, nor would I specifically go out and read about it unless they were perhaps closer to me.

So I suppose I shouldn't get angry about it. I find it quite difficult to wrap up in a few words exactly what my future holds for me anyway as that isn't exactly clear at the moment. It is quite an uncommon Cancer I suppose, I hadn't heard about it before I was diagnosed - heard about the big ones - Lung, Prostate, Throat and Breast etc., but Bladder - no never heard of it yet it is the 4th most common in men.

Anyway, just another of those things where I know that I'll be under long term observation (at best) and that I will not be fixed by Christmas this year or perhaps next year either or the year after that. I'm still coming to terms with that aspect of it and I've not got there yet so explaining it to someone who thinks this course of treatment is the end of things can be quite difficult.

Let that be a lesson

I was really tired yesterday. I am guessing that I am really not quite as fit as I feel and going out on Wednesday evening, walking to the venue and being out and not resting at home all contributed. Not that I feel ill or anything - I was just tired.

I will have to build up gradually if that is the case. I've planned a few outings after my last treatment next week. I shall make sure that I am fit enough to do them.

It all adds to this week's underlying theme of being quite angry. I'm angry about most things; work, insurance, fitness, perceptions, being stuck at home etc. I will work on getting that out of my system and "kind of" looking forward to the last treatment on Monday.

Tired? I'm Knackered

Well my little excursion last night brought something home to me. I am really knackered this afternoon, I'm yawning and can't concentrate - I'm going to take myself off for a lie down.

And my other computer has just blue screened - oh great :-) I can see next to nothing getting done here this afternoon if this keeps up.

Just cannot get going this morning

I cannot get going at all this morning. I've a piece of work to finish and I have sat and stared at it for 30 minutes and not done anything with it. I'm feeling quite tired too. Perhaps going out last night and the walking has just tired me out?

At the risk of repeating myself

I was asked if I was "better" last night. I suppose the answer is yes. I'm better than I was 5 months ago. On Christmas day it will be 5 months since the first operation. I'm better than I was when I had that done. I'm better in terms of all around health and I'm better in other ways too.

It is again one of those difficult questions to answer because you look and feel better but I have no idea if I AM better until April next year. Even then I'm expecting that this is a long term thing. So you have to caveat your answers with a yes and no type response. "Yes I'm better but no I'm not cured" or some such thing. As most people start off a conversation with "How are you?" it can be difficult answering that honestly. "I'm fine" doesn't cut it neither does "I'm getting there". Trying to explain that you are well but you are really (actually) ill and will remain so for a long time is quite difficult to phrase easily.

As I really haven't been in too many social events these past months it should be interesting to see how a number of people react to me on Sunday as I am going to a large Christmas Lunch. I'll see if I can come up with any easy to use responses to "how are you?"

Life is unfair - I feel a fraud having read these

I think these are really special blogs and bits of news. I know that I'm ill and all that but take a look at these and go stare someone in the face about your troubles.

Sophie's Blog

Josie

Let us all remember our place and how lucky we really are.

Oh you look well

I was just amusing myself over at the Bladder Cancer Cafe HERE there are some great stories and some very sad ones to. It is a good place to go to some of the time. I have to say that it can actually work the opposite way and make me quite depressed too.

However the humour section made me laugh and I thought I'd share some of the more trying moments with you.

I met up with someone who said "Wow you are looking great" to which I retorted "They didn't operate on my face!"

Too many people think that if you have Cancer you look frail, have no hair and are sick everywhere. Not true - the trouble is that even though you can't see it, it is pretty serious and it isn't one that goes away easily. Ho hum...

The Long Distance Pee

I seem to be back to the every 15 minute routine (actually it hasn't been that bad). I can't see that I have drunk anymore than I normally do. Perhaps I ought to keep records. I do on treatment day so I know how many pints of water I have had post treatment and when I went and what the results were.

It has actually settled down now but late this morning I was in and out all over the place.

Navel Gazing

Strange past time. Trying to get people to look up and ahead is interesting. You can warn you can explain, you can talk but you cannot make people listen. It amuses me no end when we get to the point where it has all gone pear shaped and I wonder whether to utter those word "I told you so". The fun part is the person it happens to has absolutely no idea what is coming down the road to hit them and it comes as a complete surprise.

One of my favourite sayings is "I may not always be right; but I am NEVER wrong".

Not a lot better this morning

I can still feel the anger inside me. Whilst I'm not as angry this morning as I was yesterday I have to admit to being quite up for an outburst or two at this moment. It is probably the way I am feeling about myself and what I have and why no one else can see it the same way I do - I think.

I didn't know anything about Cancer before I got it and so it would be difficult for me to understand a colleague or friend with it. In fact, it was only after I got this that I fully comprehended how some of my friends who have gone through other Cancers must have felt, hurt and recovered.

Perhaps I need to communicate more and try and give them some understanding of what it is really like? The trouble is, you tend to sound "attention seeking" or worse "self centred" but you don't really mean to be. My "honest this is how it is" approach also has its drawbacks as it is probably too much detail and quite disturbing?

So perhaps that is it. Work, in contact with real people (face 2 face) looms large and perhaps their grasp of the situation will need managing so that they get it.

Right, that's enough of the deep and meaningful stuff on a Wednesday - time to get on with some work.

An Angry Day

Tuesday has been an angry day. I didn't get done what I wanted to get done. Stuff got switched around and totally screwed my day up. I had a sense of humour failure on a number of things. the Insurance, Work, Projects and generally me being fed up.

I hope tomorrow is a little bit better. Not that I don't feel well, just one of those days. I must be careful not to use the "who gives a s**t" sort of answers when discussing some insignificant point at work. Careful son, careful :-)

I'll bid you good night as I ought to get some sleep and forget about today altogether!

I don't think they got it

Yes, I'm certain that some people didn't really listen when I said I'd be back at work in January full time they have taken that to mean that this is the end of my treatment. In fact that is probably far from the truth. I am expecting that this is the beginning of my treatment. Let me explain:

The Cancer grade meant it needed an operation to get it manageable. The second operation was to attempt to get the grade to CIS which it is. After that - then treatment can begin. This batch of treatments are to stop recurrence of tumours. I thought I had explained that to them.

If this is successful then maintenance is an ongoing thing, for many years to try and control this.

It looks like I'll be explaining it to them slowly again until they wake up and get it.

FUD

Fear, Uncertainty, Doubt = FUD

A Bit Annoying

I received a letter from the Insurance Company. The letter they sent in October hasn't been actioned by the Hospital. Six weeks would seem long enough. the trouble is that it is one of those ticks in the box I want out of the way. Treatment [tick], recovery [tick], holidays sorted[tick], Insurance [Tick], Biopsy Operation [Tick], Diagnosis and future plan [Tick]....

Let's hope that the Hospital get the reminder today and send back the form and we can all move on again. It would get it out of the way and stop part of the FUD that goes with all of this.

Can it be Cured?

I don't think Bladder Cancer is one that gets cured. I think you get remission on this one (I could be wrong I need to check it).

Some Cancers can be cured, some of course get cured as the radical surgery removes the infected organ entirely. I suppose if they do that then perhaps it is cured in Bladder Cancer cases.

I state this only in as much as someone dropped me a line hoping that I'd be cured. I'll have to do a bit more research on this one.

Different Again

Well that treatment was different again to the last one. The instillation was much easier and less uncomfortable. The frequency of going to the toilet was down and so was the pain level. I could be getting used to it I suppose but I doubt it. I again waited until after the two hours to have the Paracetamol and Ibuprofen. I then slept for 2 1/2 hours before waking to go to the toilet this time.

Whilst the frequency was down the level of gunge and clots coming out were more pronounced and this morning quite the largest two I have ever seen.

I am feeling very well again and my body is warm all over which I have tended to notice over the past few weeks.

So an interesting change in side effects. I spoke to the Nurse yesterday about everyone else having colds and I have to let them know if I get a cold especially Flu or Flu like symptoms, additionally if I get a chesty cold too. In the latter cases they would delay treatment - something I do not want at all.

The Urology Nurses are very good and I liked the comment about this nurse needing her sticky labels - I asked if I'd get one for being a good boy? No - these are to put on the treatment syringe which she actually showed me. I still reckon that the syringe and all the equipment hanging off it (tubes and bits), if it were a real injection would make you pass out in fear. It is massive.

I'm up and about early again this morning and fully with it. A little discomfort and that is about it so we will see how the rest of the day goes.

That wasn't so bad

Apparently I have a tight urethra hence it is a little more painful for my treatment. I was hoping they wouldn't mention size at all really :-)

Actually, I can't put my hand on my heart and say that it hurts. It is unpleasant and uncomfortable and you get a sharp gasp as the catheter passes the Prostate but other than that it isn't like thumping your thumb with a hammer or cutting yourself. I'll not mention pricking yourself as I know that the audience for this blog has a strange sense of humour :-)

It is brilliant to know that I only have one more of these to go.

More later - off to lie down now I have done my 15 minutes a side routine.

5th Treatment

Here we go - 5th treatment of 6 looms large today. I had a much better night's sleep than I normally do before these. The Appointment is earlier too. I am going to re-run last week's timetable which ensured I had an easier time of the side effects.

I only hope I don't crush the stress ball too much

Exercise

I managed to get out a couple of times down the week and so far I have been out walking every Sunday. The muscles around my stomach are where the problem seems to be and I am hoping that as I increase the exercise I can get them working better and tightening back up. Also I need to lose some more weight. I've lost a little but I really need to lose some more. I am eating sensibly now and not snacking as I'm not just sitting around anymore.

I suppose putting on weight could be viewed as a good sign but really I need to be back down to where I was beforehand.

All Around me are ill

This will be fun. The rest of the family have various colds and Flu like symptoms and I've got to get my treatment tomorrow and report any "Flu like" symptoms which could be serious side effects :-)

I'll have to have a chat with the Nurse tomorrow and see what that is all about.

Downhill from now on

Yes,

2 more treatments to go - one tomorrow and then just one left after that. Something to look forward to leading up to Christmas.

You feel with this treatment that you just get back to feeling great again the day before the next one :-)

Life is like that don't you think? No doubt the specialists worked out that it takes roughly a week to recover and so this was the best frequency for treatment - clever aren't they!

Beginning to get back to "normal"

As I said yesterday, I am beginning to notice long periods of time where I don't think about or act as if I have the disease. I think that this is a good sign as I am coming to terms with it and I am beginning to manage it and not it managing me. A lot of people talk about having a "state of mind" about cancer. I'm sure there is something in there about that.

In this instance I think that you do get a very big shock to start with, you don't believe it for a while, you tackle it with denial (or however you tackle it), you then get to the point of acceptance. I think you get to acceptance and then you go through a stage of depressive acceptance and grow out of that. I think I have now got to that part which is I've got it, I've gone through the treatments and I'm recovering and feel almost fully recovered, I don't have anything on my near term radar like tests and operations to cope with, Christmas is coming, things like work are getting back to normal, my day to day is getting back to normal and very soon, I hope that I'll be going a day at a time without thinking too hard about what I have got.

I'm going to be making sure that I eat and drink the right things still but these are becoming habits now so that should also help me to think less about these things.

Well I am pleased about this, I was beginning to worry that all I'd ever think about was how I am, measuring everything I was doing in terms of what effect it would have on me etc.

Not so bad

I have just finished the majority of newsletters and Christmas Cards and notes to those who don't know. It wasn't as bad as I thought it would be apart from one - someone I should have told a long time ago and completely forgot to. Other than that - nowhere near as bad as I thought it was going to be at all.

Hope it stays that way.

Beginning to think less about it

I'm beginning to think less (all the time) about what I have now. I can go for many hours without my thoughts turning to the facts and that is beginning to help a lot. I can concentrate on things and it is only seeing the paperwork and other reminders that take attention away.

Today is going to be difficult not to think about it all day as I am doing my Christmas Cards and inserting newsletters or writing notes to people.

Silly Season

1st December - no one wants to work, no one wants to make meetings, meetings that have been planned get canned and moved to next year.

Here we go, it is Christmas and all the crazy behaviour that goes with it. For once - this year I'm going to take extended time off and I am actually going to spend time to myself. I've often taken time off but hardly ever have I done what I want to do. I have absolutely no idea what I AM going to do yet but I'll have fun thinking about it. Two more treatments and two more weeks left and I can relax up for a while. Nice!

Friday - Time for a laugh

When I got my Outpatients Appointment letters they arrived in six envelopes over two days.

Now, you'd have thought that someone booking these knew they wanted a recurring appointment, on the same day each week for 6 weeks (albeit not all at the same time but near). How difficult would it have been to make 6 appointments and put them all on one letter? Everything would have been in one place, the cost of letters, envelopes, handling and postage alone would have (you would have thought) paid for the difficulty of doing that.

I reckon though that the computer system cannot do this and each appointment once made automatically generates a letter.

Perception of the treatment

I had a funny chat today. Someone thought that - the treatment I was having now would be the lot, you know, I'd be fixed and that was it. I'd probably say that my impression would be the same if I didn't know all about my disease and the treatments available.

I will have to do some educational work I suppose to explain what it is I'm having done and what it really means.

I was disappointed to read today that this disease gets a lot of recurrences. I don't like the idea of that at all. The operations are stressful things to cope with and to imagine having to have a number of these again in the future is worrying. I hope that the treatment will get me as near to OK as is possible.

It's not that I don't like you - it is just that I could be writing this blog for a number of years!