What part did I NOT make clear

I find that there are a number of times that I go the extra mile and let people have their head and let them get away with more than they should.

My reward - in many cases - is to get screwed for letting them take the extra inch and make it into a mile.

I've always let everyone have the benefit of the doubt because - once in a while they pay you back and reward you. It makes up for the 99 who shit on you. I got dumped on today and I find that unacceptable as I went way beyond the extra mile to accommodate their stupidity.

Sometimes, I wish that I'd just tell people in the first instance to shove off and not take the second insult from them.

People are very disappointing to me these days.

Maybe I expect them all to have the same standards that I adhere to?

Maybe I am too old fashioned myself?

A different way of looking at things

A guy I knew once told me that he needed to "mess with his brain" - well actually he put it a bit more crudely than that. What he meant was he needed the challenge all the time to make him tick. he didn't do social niceties and he didn't do friends (the people not the show) that much etc.

I'm just doing my first assignment for my Foundation Course but also finishing off the section on Paul Cezanne. Now, before I'd spent much time on this, I'd have told you that the guy surely couldn't command the sort of respect when (and I have actually seen some in the flesh) he couldn't paint and that there was little that made me want to get involved in the picture. Interesting because anyone who knows me does know that I try and give everything a fair chance and if it doesn't float my boat I'll just move on.

So Cezanne; what can I say but a new way of looking at it. It isn't a 2D flat, did you run out of paint half way through? Type of view now. I'd never ever thought of art as emotion on a canvas. A Dutch Master like Vermeer - now that was always my view of the world and suddenly it is quite liberating to "get it" after all these years. Cezanne's work now looks very different indeed after going back and looking at it again with fresh eyes. Bring it on!! :-)

I find this whole learning process messing with MY brain - and do you know what? It's really great. I feel quite cheated that my old school and the system never gave me this opportunity when I was younger. In a way some of that is my fault too but you don't get it when you are a kid and certainly not when you were turfed out of school at 16 into the real world to go get a job.

Better late than never and I hope it opens my mind to some more of this that tears down my long held views and makes me look at things differently. Who knows what will happen next?

Amelie and assorted French Films

Well you never thought I was going to be someone who thought Top Gun was a good film now did you?

I have just watched one of my favourite films - Amelie - it always cheers me up and ties me in knots at the end. It is a lovely little film but best watched in French without the sub titles if you can manage it.

Delicatessen would probably be up there with City of Lost Children, Belleville Rendezvous and A Very Long Engagement.

Of course there are others that I like watching but these tend to pull me back more often than not as I enjoy the unusual plot and the wonderful photography involved.

Anyway, it was a nice change to sit uninterrupted for a few hours, on my own watching a film that I could concentrate on. It makes a change.

Friday Reflections

It has been a busy old week one way and another. Luckily I have had time off in between and recovered from the late nights. It is one of the surprising things to me that even now my ability to do more than a couple of late nights gives me so many stamina problems but then I am getting old and I've had a good reason why I'm not as fit as I used to be.

Certainly this week has been easier because I planned to take time off, like today, to compensate for being out, having big meals and having a few glasses of wine with them.

In a few weeks time I'll hopefully be getting towards the end of the major part of my journey. If all is clear the BCGs will stop, the operations will stop to be replaced by scope inspections (not nice but at least you get checked out). 2009 may well start with a new vision and perspective on life. I still think that I'm not really settled on what I want to do maybe I need to wait to hear the news and find out what it is before committing or deciding on anything.

Today - Interesting and curiously uplifting

I had a half day off and went to a lunch time gathering and met a lot of really nice people and bumped into someone I know.

It was nice to meet a group of people from a number of shared interests and had a nice meal and a chat. I got invited to go and give a talk to them in March and that will be good.

I feel a lot better and I have tomorrow off but have plenty to keep me occupied. I find that towards the end of the week I do get tired but these odd days I have had off have made a clear difference. I managed to get a few hours sleep in the chair when I got in but I had a few glasses of wine at lunchtime and that is pretty fatal that way!

All in all a bit better in terms of getting my head around things and a lot got sorted out today which was great. A number of projects are coming together nicely and I am going to be busy in the next few weeks.

My friend and colleague isn't very well though and is back in Hospital - probably in the same ward I was in. He is not at all well and came out only to return a day later. I hope they fix him up. I am picking up his stuff but I am due in soon - maybe 3 weeks time :-(

I don't mind picking up his work but if he gets caught up on long term illness and I disappear for a week or two it will give the charity a few headaches.

See it another way

The previous post is a bit strange unless you actually know me.

Consider that for 2 1/2 years all you have to focus on is battling something you can't see, that is treated in perhaps the way that you can't really believe it "ought" to be treated and it is all rather horrible. Now imagine that you protect yourself by screening it all out and then that you don't have any plans left other than getting better.

When you start getting better things have actually changed a LOT. You are a different person in many respects, you have changed mentally and physically and now you think about it, you really want everything to be better now. All sorts of things should be better too but the disappointment is that they aren't and aren't likely to get better.

So there is the dilemma. Through the past 2 1/2 years there is every possibility that you've destroyed existing relationships and friendships and of course you have made new ones but nothing will ever be the same again and you really don't know what you want anymore.

It isn't a single thing either that will help. Being fitter and healthier may not help my mental state and vice versa. It is all about getting the balance right. I haven't got the balance right and at the moment I am struggling to find out where the correct place is. I'm sure it is all part of the process. Most of these things are.

See I'm not mad

I enjoy talking to my fellow survivors. I went out tonight with a good friend and we got around to talking about this problem with the dreams, the fatigue, the not really satisfied with life bit, the lack of sleep, the way people treat you and the caution we both have. Then there is the reticence to get closely involved with anyone - all sounds strange unless you have been through the mental and physical fun of cancer.

I'm no nearer an answer for you but it goes something like this....

I'm not satisfied with what I have now, I feel it is all going to fall down and disintegrate around me and if that happens I'll tear down the walls and re-build. I have absolutely no idea what it is that I want now. I haven't thought through what would make me happy, how I want to live, what I want to do and where I want to go, to live, to work or anything.

I know that any ideas I do have are scrutinised and examined from every angle and I don't do off the cuff things, it isn't in my nature. To do anything different involves dragging a mile of baggage with me.

I'm not "screwed up" but having something like BC kind of makes you question everything and you are presented with questions like "Well, if you feel you haven't really lived and you have survived for a purpose. What is that purpose?" Now imagine all the variants of that question to surround your working, social and home life, multiply that by 100 and you can get an idea of the questions buzzing around in my head most of my waking hours.

It is pretty obvious that I don't have an answer to this at the moment but it is worth understanding how screwed up you get. Another common thing we both discovered was that we don't "get" people anymore. In other words, we don't react to signals from people in the same way we used to so cannot recognise a come on, a go away or any other sort of subtle inflection.

Interesting about the darkness and intensity of the dreams and nightmares and whether they are real or imagined. Some can merge with reality as if something actually happened and yet you know instinctively that it couldn't. It is very strange.

Anyway, what will be will be and it is just interesting that we are both having similar struggles.

What next then?

I've cleared out one of my tasks. The last time I have to arrange the dining and seating plan for one of my Lodges as I finish off as Assistant Secretary and move on to be Chaplain tomorrow. In a way I am looking forward to giving this up. With all the treatments and other things going on I haven't always made the meetings but I have always been able to do the table plan and sorted that out.

the Chaplain is a less active role but I have picked up another role in another Lodge which I will be appointed to in a few weeks time which involves a bit more travelling and doing but it shouldn't be bad - just three meetings to go to over the year.

I could easily be out every night of the week the way things are going. There are invites all over the place and I'm out again next week and another two times this week - make that three as I am now out tonight as well.

Phew....

I'd rather not be a professional Mason though :-) It seems a bit crazy - all those nice meals and glasses of beer and wine - I imagine that I'd be in Hospital for a few more problems to do with my health if I did that!

A Day Off - Reflections

It was a late one last night and I'm glad I took the day off today. Now what I must do is to make the most of it.

I tend to sit here at my PC and rattle through the work I have. I've a bit to do that is urgent and that I can clear up. The remainder can be left and I need to catch up on my course work which has suffered a bit this past week.

I'm feeling a lot more my normal self and yet there is something not quite right. Mind you that has been there for a long while and it is a combination of mental and physical side effects and in addition there is the coming out of the other side of this trauma to deal with. As you emerge from a couple of years of the upset, worry, fear, uncertainty and doubt you realise that whilst you have aspirations, what you didn't have were any long terms plans and in a way things just aren't the same on all levels. I went in to this journey as a high flyer who had made a significant change in his business and moved from a business owner to an employee and I've come out doing something a lot different. Bladder Cancer has changed my life, my health and my long term plan lies ripped to shreds somewhere back along the road I've come along.

I'm going to have to be brutally honest with myself in the very near future and take some steps to decide what I'm going to do next. As much as I love the job I'm in, I am so under utilised. I'm not sure that I'm emotionally stable enough to go back into the hard world of IT Programme Management or Business Management for a while. Here again is one of the things robbed from me by Bladder Cancer. That hard edged, get it done, can do attitude that made engaging me economic sense, was knocked out of me not only by the BC but also the "business" that I worked for last year. So many people disappoint me these days with their trivial unhelpful and divisive ways.

Do I actually want a full-time job? Actually no I don't - I've come to value running my own business and the opportunities to take periods of time off as and when I wanted.

Lots of things to sort out and this year is running out fast. I need to spend some time thinking about this and doing something positive. I think I make a big difference doing what I do at work, it feels right and yet?

All my "get up and go" has "got up and went" :-)

Oyster

In the UK it is a travel card. A didn't have credit on hers so borrowed mine. Tonight, when I actually need it, I get off miles away from home to find that my card doesn't work. When I open the holder there is no card at all. A BIG queue behind me and I have to find £2 in a hurry.

Thanks a lot! Just what I needed after a long day and close to midnight was to be the only one in a suit, and finding no card in the wallet where I left it.

Just dandy. Not happy at all. Ruined a good evening I'm afraid.

Flat

I feel absolutely flat today. I enjoyed watching the F1 and had a reasonable day but I just don't feel great.

I've got a nice week coming up but cannot get up for it and feel quite strange. I wrote on a piece of paper. Future? Beside that I added the job I am in, the jobs I used to have and whether or not I would be happy having a permanent job next year. I actually don't think I would, despite the stability that would come with it. I'm not certain at this point in time what I want to do - and there's me fretting about why my daughter cannot decide :-)

I'm feeling quite down and cannot quite fathom why that should be really. It doesn't make sense but I ought to realise that things don't make a lot of sense these days.

Could it have been going out with a different crowd last night, perhaps reliving my misspent youth! I haven't felt quite this depressed for a long time and it isn't "black dog" stuff, it is more a wearisome tiredness and a lack of enthusiasm for anything at the moment.

I'm going through mid life crisis and all those questions and ideas - you know - pack it all in and go and live in the country and all that stuff. Life, Job, the Universe and all those things.

I'm hoping a good night's sleep and meeting some friends tomorrow might cheer me up and I have got Tuesday off so that may help? I can hardly believe it though as right now I am quite close to tears and all choked up and I have absolutely no idea why that should be? I know it says it on the Post Cancer Fatigue fact sheet I now have but I do find these occasional lapses unnerving and a little distressing. I certainly wouldn't like to be feeling like this at work or out somewhere.

Blinding Set

What a great evening at the Charterhouse School. G2 played a fantastic set. A shame we had a few wallies who felt that they could sing better but they were silenced for the second set thank goodness. A great evening.

Mind you, driving all that way was a bit traumatic as I have to say my bladder doesn't hold itself together like it used to following all these treatments. So it was a bit touch and go and we had to make an emergency call for me on the way. I decided not to have a drink at the bar at half time and that seems to have worked out for me :-)

So I am home and wide awake at 1 in the morning and had just a few beers before we went. Sober - amazing.

It sure is good to get out occasionally...

Well here I am 1 year to the day

It is 1 year since I got the first all clear. To write it is to choke on the words slightly. It probably means as much today as it did then.

What a difference in the day it is too. Last Year I was sitting outside as it was so sunny. I was also drinking rather heavily too as I remember and I had lots of friends to come along and meet me.

I was a bit slow the next day to say the least!

A lot of things have happened and if you'd have told me that within a few weeks of getting the all clear that the business that I had been investing in for most of the year was to come crashing down around my ears and that I'd end up working for a charity I'd have probably laughed at you.

However, that is what happened and I can't say that it isn't for the best really. I was getting pretty wound up about the idiots I had to deal with and sooner or later it would have exploded somewhere else.

In the last year I have been coming to realise what it is like to be cancer free and yet, I probably feel more vulnerable now than I did when I had cancer. I'm about to have another Operation and if that is clear then we really are getting somewhere. Bladder Cancer is one of those annoying cancers that can recur and so you tend to have to come to terms with the fact that it might be back. However, on the flip side, if it stays away long enough you really do have a good chance of not getting a recurrence.

So coming to terms with uncertainty is one thing. Coming to terms with the fact that you suffer a type of Post Traumatic Stress Disorder affect because of what you went through is also something I didn't think I'd have to come to terms with. Foreshortening my career, such as it was, is probably a good thing but the power, money and thrill of what I used to do are all things I no longer have and so I miss those elements and yet, not having them should be good for me.

I'm gradually getting used to the job I am in but I hate the regularity of it and the commuting and the 9 to 5 element. They don't do fully flexible working and it halts my ability to be as dynamic as I'd like. If anything, that will be the make or break on the job when I come to make a decision in early 2009 whether I want to continue. It is a great job but I can do more. They are lovely people and I enjoy their company and their enthusiasm for the work but - it just doesn't buzz as a commercial concern does.

These results are important and a second clear will be all the encouragement I need to prepare myself for the next stage which has got to be getting myself away from niggling doubts and moving away from the PTSD or Post Cancer Fatigue towards becoming fitter and healthier. I'm hoping that my studies will be of some help but this week they have gone by the way as so much has happened and I am left with next week to get that done and my assignment. I think I can get back on track with that though as long as I spend sufficient time doing that and not being distracted.

Tonight I am off with some friends to see a tribute band G2 and I am looking forward to it immensely.

You are not taking this seriously

That is and at the same time isn't true.

Only recently have I taken the disease I had seriously and I have a defence mechanism built up around me that takes away a lot of the things you may (if you have never had this) THINK about cancer. Thinking is not the same as KNOWING and here then lies the perception that perhaps I am not taking it seriously.

I have of necessity had to look early on at the worst side and taken a fully pessimistic view based on the facts and also taking the view that I was always going to get the bad news. In early days that was a realistic way to deal with it. then came the reassuring other people because it isn't just you who gets this. Much as I like to think I am my own person, many other peoples lives are lined to mine and they suffer to so you build a crust around this and they need (and so do you) a certain "attitude" to what you have.

Now I think back to this and it only slowly sinks in just how near this has all been. I take it seriously but life shouldn't be all serious now should it. If you can't have a laugh or do a good turn then you really don't deserve it!

You kind of hope

That both the European and US guidance on Bladder Cancer Management and BCG treatments are equally as good as each other despite the fact they are so different.

There are some key differences in TURBT and Re-TURBT and in BCG regime. Mind you, it worked for me so I'm not arguing about it just noted that it was quite a difference.

I know Steve had his BCG yesterday and can imagine the side effects he is going through. It is good to have it on a Thursday though as you get the weekend to catch up a bit. I used to have mine on a Monday and it could mean that on Wednesday I wasn't really up to it.

In total I had 24 BCGs, all full strength ones which, as I am young (I think I am young), were bearable and manageable. I cant imagine that you'd be able to take them if you were in a high degree of pain from them. Mind you, I did keep in mind that other people undergo far worse treatments and that I was lucky to be able to lie down at home and go through all of this.

Blogging Pays Dividends

In just over 2 years the blog, which carries a small set of advertising banners has paid dividends and $100 was popped into my bank this morning. That's about a $1 a week :-) That's about 60 GBP.

I am going to give that to charity and felt that the charity that I work for which, unfortunately looks as if we are going to be helping 100s more children in these uncertain times, will get this first tranche. There is another $30 building up (they pay in $100 tranches) which will also go to charity.

Thanks to everyone who has read the blog and clicked out to raise the revenue.

Phew

Long day and a wet walk home - I dropped a note over asking if it was raining - no was the answer. Half way home down it came so looking somewhat similar to a drowned rat at the moment!

Anyway, I had a lovely day out with some old and some new friends. A really old lodge formed in 1757 and a lovely time was had by all. I even won the raffle - again. That is every meeting in the last week I have won something or other!

I try not to read too much into that. I have tomorrow off, thank goodness - I might even get to see the rest of the family as they have been scattered to the four winds.

All life's problems

Are really quite trivial in a way. I mean I was listening to someone putting the worlds to right and telling me how important he was and yet, why was he telling me? I live, alongside 6 to 8 million other people in and around the metropolis and there are another 50 Million of us dotted around the country and so what!?

There are lots of things in this world that you have absolutely no control of whatsoever. No one owes you anything and frankly no one really cares that much when all is said and done. Friends and family are different. I just mean the bloke in the street. The chap that opens his news paper and turns the pages with such velocity that he breaks the sound barrier each time, the arse with a phone that you obviously have to SHOUT into to make it work, the people who push in front or stand in front of you when you've been waiting, the people who haven't worked out what a handkerchief does and sniff and make gurgling noises on the way up to work each day. The guy with 5 elbows or the gawky kid who uses the wrong words to describe every day feelings. These people all live on my planet and I have to interact with them and yet, they don't matter either do they?

Suddenly life isn't about trivial stuff. I'm not saying I know what it is about but I was thinking back to this time last year and the way we were going to bring this fantastic idea to market and it was going to affect 20% of the world's market and then I realised that these people didn't have the intellect to comprehend the scale of what they were saying. Like the Bank of England estimating that the world was £1.5 Trillion Pounds down the drain basically. How many noughts is that? Does it mater a jot? Can YOU do anything about it?

So where is all of this going? I'm not sure - I certainly don't have the answer but I have really struggled with people these past few years. I've had to keep going - it hasn't always been possible to have "service as normal" but I'm relatively happy that I've tried to work normally in between and yet some people whinge about almost anything.

I knew I'd come out of this changed but tolerance (which is actually quite good considering) is not top of the skill set and you may wonder why I never took Diplomacy as a higher education subject! It would be nice, would it not, to find that there was more tolerance, more courtesy and more thinking about other people. I've been brought up like that, I try and be courteous all the time but this new generation of Londoners are certainly trying my patience. I had three people who were determined to keep chatting and occupying all the pavement which would have forced me into the road. Stopping dead in the middle of the pavement and then having to body check one of them was the only option. How difficult would it be for them to work out that other people were also there? I've said enough for today. Tomorrow is going to be a busy old day with all the meetings I have. I hope that at least I will be able to travel home without meeting the obligatory idiot on the train this time.

Snow in London

In October - first time for 70 years. I must have just missed it but after the theatres shut it was blizzard like and this morning there were quite a few snow covered cars. I was trying to work out what was going on as we just had a sharp frost where I live.

A good day today as I cleared so much of the work I was doing and now have a tidy but not clean desk. That needs to come about by the end of this week.

I'm getting quite excited as I am out tomorrow night to a very old Lodge in London which was formed in 1757 which is pretty old in Masonic terms. I'm looking forward to it as I know some of the people but they don't know I am turning up.

It is also a big day at FMH as they are having the London Ranks investiture. I have 2 people I know getting theirs so I am not sure quite how I am going to fit everything in as I may have to leave that half way through to get to the next meeting!

Friday I have off. I feel very tired today but I have been in overdrive for 5 or 6 days now and so I intend to take Friday off and chill down a bit if possible.

Saturday is the 1st Anniversary of my all clear!!! I am off to see a Genesis Tribute band and looking forward to that as a way of celebrating.

Tonight it was Tim

Nice but Dim. Went through a tunnel and his mobile cut off then he phoned his service provider and started to give them a bollocking. Then we went through a bridge and another tunnel - guess what happened? Off the phone went again so he called again and got even more irate, threatening some regulation or the other. The place was in uproar at the end of the journey - a load of people gave him an ear bending as they got off the train. He, pissed as he was, didn't really get it - stupid sod. I wish "Mr Awesome" was on the train I'd have put them together as they deserved each other. What a pompous arrogant twat! You may perceive that I really wasn't that impressed with him :-)

On a much better note, we had a brilliant business meeting tonight. It has taken an age to get it to fruition but the value was fantastic and we can all move on now. This is something else we are doing and is very interesting as a concept but also as something else to work on. Did I say I had enough on already? I have more now...

This frenetic stage

I know I complain about fatigue and I know that I still do too much but it was interesting today to see how fast I actually work. no wonder they are surprised at me up at work. I can take a piece of work, get the comments and have it out again in a few minutes.

This surprises me too as I am rattling through my work and getting huge amounts done. It is difficult when I get into that sort of groove to stop and slow down such is the frenzy in which I can churn out work without loss of quality. Tonight, I am wide awake and my mind is spinning as it tackles the new stuff for this week - Paul Cezanne and puts into place Doctor Faustus and Cleopatra all of which are also making my brain do loop the loop.

It was 1 year ago that I was getting ready to hold a 2 day workshop and this Saturday marks that fantastic day I got the clear from my Consultant. And typing that I've come over all unnecessary (stupid). What a day that was in the early Winter sunshine. How pleased I was - how unbelievable it all seemed too. All my mates came out and we celebrated and I drank too much but hey - it isn't every day you get the right sort of news.

I'm out this Saturday and it will be a celebration and a half as I will be going to see G2 a Genesis tribute band at Charterhouse School in Godalming, Surrey. I missed it last year and went to my Aunt's 80th - this year I can go - looking forward to it very much they were absolutely brilliant the last time I saw them.

Wow, a year already - that has gone fast. I thought all my dreams had come true on that one day - luckily the most important thing - my health - remains OK. The other stuff is, as they say, history.

If he said Awesome once

He said it 50 times. There is nothing "Awesome" about meeting your mate off the train, or meeting at Starbucks or in fact going off for a few days to see your mates at Uni. 15 sodding minutes this kid was on his mobile for. "Yea Awesome" "Right Awesome" I was getting quite a twitch by the time he hung up. What a pratt!

So having now got that off my chest - the rest of the day has been one of blitzing through my work and now I am getting ready to go out again tonight and again tomorrow night - it isn't any wonder I get tired...

Everything seems to be like that at the moment though non stop. I suppose better that than doing nothing.

The Fear of Recurrence

How many people do you hear of who get cured / remission and then get a recurrence? It is worrying that the second time always appears to be far worse than the first. Often you hear that the second one turns out to be the one that gets them.

Apparently it is quite normal to be worried but it seems to be something that really should be picked up early if they continue to monitor you and test you. So that is a niggle - I'll be asking my Consultant about that in December I hope.

If you consider that cancer patients are probably likely to get it again you'd be expecting it. Maybe it is something, like side effects, fatigue, black dog and all the other stuff they don't tell you about.

"The Truth? You can't handle the Truth" well medical establishment -maybe we can.

BBC showing American Football

And it is live from Wembley - where did that come from? I've always fancied going to see it and so where were the adverts, I could have gone today - it would have been something to experience.

Oh well, I suppose I can watch it on TV in the warmth of the house.

Happy Birthday to

Well the blog actually....

2 years old already - perhaps the "Terrible Twos" will set in now and the blog will become unmanageable?

What a lot has happened since 2006 as well. At that time I had just started the BCG treatment for CIS having had two operations (I wasn't expecting the second one to be a TURBT) and was coming to terms with the unknown and the uncertainty of the diagnosis. Sure, I knew by then that if the treatment worked I'd have a good chance but the Treatment needed to work.

So much has happened in my life since that time as well. There is no way I could have envisaged I would end up working for a charity. I worked for that other bunch of low lifes who screwed up more than one person on their rapid, tragic and amazing climb to the heights of insignificance and lost the respect of everyone who dealt with them. Should they ever happen to find their consciences - I hope that it gives them a migraine for years.

There have been some amazing highs and lows and the emotional and physical roller coaster associated with getting cancer and recovering have been surprising to me. No one really ever talks about what cancer does to you. You see it on the news maybe and someone does something amazing with their remaining days or someone famous dies of it but you don't get under the skin of it, you don't pick the scab and let it bleed and really get under the hood and see how it works (am I mixing my metaphors?).

I am still trying to tell it as it is for it isn't a case of having it, getting over it and getting back to work. Someone recently published a paper saying that cancer was now so well understood for certain types that it can be treated as a serious life threatening disease. HELLO!!!! No it isn't like that at all, not one of my Doctors or Consultants have ever talked about the emotional side of the disease nor have they ever spoken about the side effects and imbalances in your body, the "other" side effects just don't get a look in. Realistically given the pressure on them they can't but somewhere along the line there ought to be the "handbook of cancer" or "Cancer for Dummies". Perhaps this blog and Steve's in the US will be a start to telling everyone - how it really is.

The stigma attached to cancer is going away although I still notice that some aren't particularly comfortable with it. The fact that you are more likely to survive is, I am pleased to say, gratifying. The not treating the whole problem must be addressed soon, it must be adding to people's stress levels and costing the health of the nation more if it remains ignored.

Today, after 2 years, I am very grateful for all the work the National Health Service has done. They got me in fast, did what was necessary and treated me OK. Sure there were a few things I didn't enjoy but, let's face it they are trivial and I am here to complain about them :-)

These days I am coming to terms with how ill I have been and I've put up this massive defence (defense in US) mechanism that acts as a force field to be able to take the treatment and operations. The personality force field isn't particularly one I like although I am controlling that to some extent now. Both are there to take away the horrors, make you feel positive and to protect yourself from people and from treatment itself, there can't be many times in life you actually let someone stick a pipe into your penis, without an anaesthetic so somehow you need to block it. Again, no one will tell you that the cancer patient will have done this and that the way they talk and react to you is different because of these sorts of things.

Anyway, after 2 years, happy birthday blog. Sometimes I don't know what I would have done without you. Other times, I've published and be damned and occasionally I've been too open and pulled my posts. I do however feel that the in general the stuff I have left up here is what it is like. you get 90 or 95% the remaining bit has to be mine and is too dark or too incorrect or full of bile to let you see. It really is the swearing, cussing, PC Incorrect stuff we all have hanging around as baggage and I'd rather not share that on this forum.

Has it been therapeutic? Yes it has it lets me let off steam and be informative. I don't speak for all of the sufferers of bladder cancer but this is what happened to me so somewhere, if someone gets one good bit out of it, feels they aren't alone or wants to know warts and all what it is like then this blog will have done its job.

28 months since I got the first signs and now - much to my relief and surprise - it will soon be time to close the book and open the next one.

OK no cold beer then

Despite a request that a couple of cans be ready when I got home as I wouldn't be drinking and I'd like to settle back with a beer after a long day.

Oh well if "I didn't have time" or "I decided to do something else" weren't exactly United Nations ways of answering the question I didn't get a beer.

I did manage to crash out and sleep well following all of that work.

I now need to spend today sorting out all of the paperwork and also work out what I need to do to complete my coursework this week - I'll probably do that this afternoon.

What a day

Am I ever going to pay for this tomorrow. I have done so much work that I wonder how I managed to execute it. Today I had two meetings one after the other and managed to:

1. Not fall asleep - I had been at the Masonic centre for close to 11 hours when I left to come home!
2. remember I had the car and that Tomato Juice and Worcestershire Sauce were the order of the day.
3. Manage to make just a few mistakes during the day

I am going to go downstairs in a minute and crack open a can of beer and put my feet up! I deserve it. It was also nice to see my boss out of work and in another situation.

Buzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Wow what a buzz I am getting from this Degree course. I had this two hour tutorial and it feels like someone has stuck a 9Volt battery across my tongue or unlocked my head. Brilliant!

I cannot believe the stuff I was coming out with in class - it is so stimulating and I wished I had studied the Humanities a bit more when I was a kid. We had to do Technology and Engineering in those days (no bad thing) but how I would have loved to have this insight into art, history and books many years ago.

Broadening the mind is great - I hope my head doesn't explode though :-)

Rejoice

And be thankful. Not my words but when I got the all clear I felt very matter of fact - I was excited and I was taking it all in and winding down from being pent up and reading Steve's blog today where suddenly he feels wiped out you can understand why just think of the months of tension waiting to hear whether things had worked or you might have to go down a different road.

I remember telling someone that I was clear and saying it very mater of fact when he just said "Rejoice and be thankful what wonderful news!" It takes a little while although I think I was really crazy for the first 18 hours and then was taking it in after that.

I can't tell you what the relief is like. Imagine holding your breath for 3 months and then breathing properly again. Something like that I guess.

I need to remind myself to be thankful sometimes and when I get upset or depressed or fed up it is good to bring yourself back with what a brilliant thing it is to be alive and to be healthy (I'll say healthy I still need to get to healthy but you know what I mean). Is getting back to normal a good sign or should I use my experiences more positively and not forget them?

Rejoice is a great word - it really means celebrate when I hear it.

3 hours I could have done without

As the Internet and cable connections died. Great!

I had to connect up some old modems to find out what on earth was going wrong - is it just me that finds the phone help system ironic that when you go to report a fault it suggests that you look at their online help page?? But my Internet isn't working - well ring the premium line number then. You have to ask yourself what spreadsheet jockey and pencil up his arse manager thought that particular slant at customer management up. If it is their fault they refund you your high rate call charges?

Now call me old fashioned but I pay the bill anyway so why make me pay to talk to people whose salary I pay through me paying my bill. Some jerk has really got it all wrong don't you think.

Now I need to go and work out why only one of my computers is working - well actually I know why - it is just going to be ball breaking stuff trying to change all the settings - nice of Microsoft to help out and be so intuitive - but sometimes it really doesn't help guys.

Perhaps they ought to get together with my ISP and work out how to look after their customers?

A Day Off

Well maybe. I have a desk full of stuff here to get through - knowing where to start would be a good thing :-)

I'm still pleased to hear about Steve's diagnosis and it reminds me of my first and second trips. the first was pre-cancerous cells which took me a while to realise meant they weren't cancerous. They were a bit like teenagers - all screwed up! When I got the clear and on maintenance on the 2nd visit it was a bit like trying to take in winning a medal. It doesn't sink in for a while. Anyway - what great news.

I have a busy day tomorrow - two Lodge meetings - one which I am Secretary for and have had to do the Assistant's job as well as he is away which has been a nightmare. Straight after that I am an Escort for a meeting and I have decided that I will not dine that evening as I would have been up from about 6 in the morning arriving at the meeting at about 8 in the morning and having been there all day would probably just end up in a heap on the floor :-)

So I had better get on - I also see that a load more work has arrived in my e-mail so I'd better get onto that as well.

I am really pleased tonight

to hear that Steve - Bio Hazard Man - is to once again become a Bio Hazard as things checked out today. What great news and even I am breathing a huge sigh of relief too. What wonderful news I am so pleased.

Maintenance therapy now and I remember my Urology Nurse saying that if I saw her again that was a good thing. It meant that I was getting better and that treatment was working. There is still some way to go but isn't it great what they can do these days? Fantastic.

On another note I mad my tutorial tonight and I am so pleased and charged up about it. It is a fantastic course for making me charged up but - the trouble is, I am wide awake at 00:30 - I'll pay for it in the morning but I have a day off.

Good - Sorted

I hadn't realised that I was the only one who noticed that I was losing momentum and not delivering - in fact the boss was a little concerned about it and was worried that I might be getting wound up about work which really isn't the case - some can be a pain but that sort of anger isn't like the Post-Cancer Fatigue stuff.

I laid out what I thought was wrong with me as I thought they should understand it and also that I had plenty of days in hand to have days off and control things. I'm pleased that they hadn't picked it up, I was controlling it and making myself worse outside of work.

I suppose working 16 hours a week on studies isn't really helping either :-)

Anyway, I feel very pleased about it now and a few days off starting this Friday will do me good.

Here's to Bio Hazard Man

Steve or Bio Hazard Man is about 18 months behind me in his diagnosis and treatment and is about to get the inspection that will determine the next stage of treatment based on what has already been done and what is left to do.


Don't underestimate how stressful it is to wait to hear whether or not things have worked out. It is like waiting for your number in a lottery but the stakes are a lot higher of course.


Here is Steve's wonderful blog about Bladder Cancer and I'm spending Thursday afternoon and evening thinking good thoughts and praying for the right movement in treatments for him and his family. If you have anything to cross then please do so.


I know there is a lot going on in the US right now but actually all our votes are with you at the moment Bio Hazard Man. Good luck.

Somehow we missed again

What a day - hectic is an understatement. Didn't even get to see the boss for more than 5 minutes and so will need to see him tomorrow. I think it is best I just write it down and stick it under his nose rather than do a chapter and verse.

Next week is half term here but I have meetings across the week. Somehow I need to wangle a few days off in between although I have no idea how I'll do that with so much stuff landing on my plate.

I've plenty to do and lots of little projects and somehow I have to get my study squeezed in this week too and a tutorial. Arghh!

Oh well better busy than sitting around doing nothing - but then again maybe once in a while to be lazy is no bad thing?

A tidal wave of things to do

You just can't believe how taking a hands off role for a short while results in nothing getting done :-)

I get kind of annoyed about it but I shouldn't. Some people work their way through life staggering between one crisis to the next. There is no learning from the last time or planning things out better next time they crash into everything are late mess things up and seem oblivious to the utter carnage they cause wherever they go.

On a lighter note - I had to tell a telesales person to stop reading from his script as he didn't understand that he was trying to sell me something that a Charity doesn't need - a merchant system :-) i tried to interrupt but we are a third sector business and I just heard him go back into the next spiel for someone who had raised a mild objection. I had to then explain that he ought to stop reading from the script for a moment and try and understand that we are a CHARITY and it wouldn't matter if it was free or not, we wouldn't use it. He got the message then.

Didn't happen

Full on day today - didn't stop from the moment I got in. Threw it down with rain and I am absolutely soaked through. The rain just tipped down and I was close to hypothermia by the time I got in. Everything is soaked through. Yuk

I will Have to sort out holidays and all that with the boss tomorrow. Off out again in a minute and covering for a number of people. All sorts if problems are going to arise soon as unless other people step up to the plate, I will be unable to pick up all these odds and ends and these are adding to a workload I just don't need.

Post-Cancer Fatigue

Is what it is called. I need to get this sorted out I really do. I cannot believe how much I am struggling just from the short (2 3/4 hour each way) drive to and from my parents. then I realised I haven't driven my indulgence for 2 or more months!!

Poor old car - must have thought it was its birthday!

Things to do

Tomorrow I need a clear the air meeting and to set out some sort of timetable to take time off from work. I am getting too uptight about work and all the other things going on and I don't need to be. So much is going on in the next two months and the next three weeks are chaotic.

I must have let the brake off as suddenly my diary is full of things to do and meetings to attend and in between work and study need some time but for someone who makes a living by being organised - my diary and everything is in disarray. A lot is to do with the obvious thing that I don't actually have the capacity to do this, I'm not fit enough and I still get huge fatigue issues. Whether it is mental (not being able to actually do anything because the brain isn't working) or physical must be tackled and trying to drive myself through it isn't working at all.

I have time available to take off as leave and I may as well use that now and get the rest I need. If I can work out a schedule I will be half way there I think.

Off for the weekend

It will be nice to get away and spend some time with my folks. A is off to see a University half way across the country and so going half way there is useful as well as they wont have to drive for more than a further couple of hours.

I think I just need to chill out a bit this weekend. There are lots of things going on all at the same time next week and I need to be in control to manage them.

Fed Up

I'm fed up of being not quite right all the time. I'm fed up of not having enough energy at the end of the week and sometimes even earlier in the week.

I'm fed up with a whole load of things at the moment and I really couldn't tell you why that should be. Nothing "feels" right and work is great but there is something missing, the course is great and I am enjoying it but again, I cannot quite put my finger on what is wrong.

A weekend away might improve things?

Missed my Tutorial

I met up with someone yesterday and it ended up as a bit of an afternoon distraction. Probably the thing I shouldn't have done was to see an old friend and invite him to join us for a beer because he was meeting a few other friends and it went on from there!

I wasn't late home but even so there was no way I was going to get to my tutorial.

Working at home today - this is the second time this has happened this past few months!

O For Goodness Sake

Maybe we aren't going or maybe we are. This bloody dithering is a real pain in the backside. What the hell use is it making all these plans to be somewhere and then at the 11th hour (again) fannying around and changing them.

As most people who know me (and frankly this lot should know better as they live under the same roof as me) fully understand I don't do dithering and last minute changes in plan as it normally ends up in some almighty screw up that is beyond my control and you certainly don't want to get on the wrong side of me if you've wrecked my plans or put me out. Even I wouldn't want to work for me!

Just sort yourself out people and tell me what is going on. How many times have they done this to me this year? It's rhetoric don't answer me...

I really don't need to be angry this late at night either that is my sleep shot for a couple of hours no doubt.

Off to my parents for the weekend

A wants to go and see a University half way up the country. We might as well stop off half way and I have't seen my folks for about a year so better get along and see them I guess.

The trouble is it will be Friday night and we need to get around the dreaded London ring orad the M25 or as we like to call it the car park! So hopefully we will all get back on time so we can and sit in the queue earlier :-)

I hope my leg manages to keep together - I have been cramping up all today and most of last night too. Oh well let's see what we can do.

Mad as a Fish

Catchy title, no where near reality..

Great friend asks me tonight - so - if all is clear - what are you going to do with the blog next year?

Gulp - blimey what am I going to do? It can't be My Bladder Cancer Journey for surely that will have passed into "My Bladder Cancer Recovery"? What will I need to do next?

I fancy a comedy blog but full of the day to day wit and banter from the nonsense you get at work and on the journey into and out of town...

I hadn't even contemplated that this blog should end but I suppose if it adds no value - other than "life goes on" to fellow sufferers it will just need to end with that as the last episode and move onto the next chapter in life.

How I look forward to working towards my Degree, my work in the Charitable sector and how I'd love to get into the traditional life of the City of London. Maybe that would be a worthwhile enterprise but let's not jump the gun just yet.

Move over Plaisters Hall - Hello Guildhall

I was invited out by someone who has held a watching brief over me these past couple of years and one of the nicest people you will ever meet to go to the Guildhall for a meeting and a meal afterwards.

700 or more years of history right before your eyes as we were in the Crypt of the Guildhall. It is a fantastic place to go and we had the most amazing meal and wines followed by a rather nice Port before coming home.

It is such a pleasure to get an invite to one of these splendid historic meetings.

Needless to say I am really quite buoyed up from the experience, I met some really nice people and a celebrity who really was a very nice person indeed as well as some very old friends.

I have a feeling that the meeting in December I enjoyed so much last year may be when I am in Hospital which WILL be a big disappointment as it is held in rooms re-built just after the Great Fire of London...

The City of London has some really good stuff going for it if you are a Historian :-)

I believe I will pay for this later this week..... Out again tomorrow!

Monday - Busy

I am looking forward to tomorrow as I will get to go to the Guildhall for the first time. I am looking forward to it immensely and will no doubt be suitably tired as a result.

I completed the first part of my Arts Foundation today - I am running a week ahead of schedule so that I can make up for when I have to go into Hospital. I have to say that I am really charged up about it. The first module has been about Cleopatra and this next one which I am not looking forward to so much is Doctor Faustus by Christopher Marlowe. The course builds right across the arts and not just History so a bit of English Lit will be difficult for me but interesting nonetheless.

Now to go and get my stuff ready for the morning. I have an interesting week in front of me as I need to try and balance all my meetings and activities with the problem that I have just realised that I have to find 2 weeks to take off between now and December as paid holiday (vacation). Oh dear, the only time any of us have is half term - although not A she doesn't get time off until Christmas. I have 3 meetings at half term so I am stuck, C and L have to have that week off but I understand are going out on 2 of those days as well.

It seems to be the case these days that we hardly ever get to do anything all 4 of us. This weekend it looks as if we will get away to see my Mum and Dad. It will have been a year I think since I last saw them and possibly longer for the girls. Even then A and C are off to view a potential University on the Saturday but at least we will get some sort of visit with them. I hope that it isn't too long in between.

Distraction

I don't think there is a day goes by where I don't think about what I had and where I still go to the toilet and hold my breath in case there are the tell tale signs reappearing. I am constantly considering how I feel and I am constantly reminded that I have had treatment as I cannot find the right words to say. That is a big problem as I do a lot of face to face meetings and searching for the right word is terrible. I know that it will go away in about a month or so but it is really disconcerting.

There can be little more worrying than it coming back or indeed taking on some more sinister complications but it is good to know that I am being regularly monitored and that this next operation will (hopefully) be my last.

Day to day the fatigue and the memory and concentration problems are the constant companions of the disease or rather its aftermath. I'd rather have them and be Cancer free of course. You tend to forget that.

Trying to distract myself or work myself to a standstill kind of works but I'm not certain that working harder rather than smarter is a good long term solution. I turned another phase this week and beat the anger of dealing with a couple of jobsworths and perhaps I can move on a bit now and get past the fatigue and the memory bit.

The trouble is it is such a slow process getting back to normal. Also the play acting that you are alright is OK but when you get back after having been out at work all day and then out in the evening for a meeting and a meal soon catches up with you. Just annoying that the day they say you are clear isn't actually the day you are completely cured and back to the way you used to be :-)

The Buzz

I still have it from Thursday and how interesting that my daughter A is also studying Art History at the moment. I get a run at Cezanne in a few weeks and I am really looking forward to learning a bit more about that subject.

Health wise - I'm hoping that the buzz is beating the blues and the fatigue. I think that it probably is. I just need to chill out a bit more.

I did say that I'd pay for it

There was a retirement do at the office and quite a nice party - one of the funniest speeches I have ever heard too. I said to a few last night - I'll pay for this in the morning as I have again had quite a busy week and sure enough I dragged myself out of bed at about 11 this morning.

Another busy week coming up too. I am out Monday , Tuesday and Thursday evenings. I think I shall keep the other evenings free so I can study and just get a break.

I can get a real run at the course work this weekend, I hope, and then starting next week I will be able to keep on top of it. There is a LOT to get through and each week we look at a different person and their "reputation" it is fascinating and already I am drawing parallels about this with my work as we have a reputation that we didn't build and it needs to be re-imaged to what the reality is. This is one of the interesting things about the work we are doing as there is a direct relationship between what I am learning and what is going on - there sure are some interesting coincidences in the world!

And so it transpired that on the Thursday

He did OK. He didn't rip any-one's head off, he didn't call the obstropolous jumped up so and so what he thought about them - in fact he went on a charm offensive. Keep your friends close but keep your enemies closer.

Then after a full days work went to the tutorial which was inspirational and I feel lifted, really up for my course now. Some nice people on the course too. Yep, roll on my Humanities Foundation course.

I am surprised how little it has taken to get me diametrically of different attitude to 24 hours ago.

Such is the swing and ebb and flow of the exit from this disease. Even better note in one direction is my friend of heart attack fame had his surgery today and is due home tomorrow so that is great news.

Worse news on another front a friend who has had a recurrence is under some serious chemo at the moment - I wait to hear how he has got on.

Tomorrow should be interesting

I think I will go in but I am feeling a little raw edged still. Frayed nerves or not - I am going to go in and then I have my first tutorial tomorrow evening so I am going to catch a bus to the College and see how I get on. It is also quite near to where some of my friends are meeting and so I might pop in to see them afterwards.

Like all these things - I suppose I ought to see how I am in the morning - well in 5 hours time I suppose.

Anger

That is what it is, I have this utter burning anger and it isn't for much of a reason it is just how screwy your head gets when you are tired and the fatigue kicks in. You can't really explain it other than just being mentally and physically tired and it doesn't matter if you sleep or relax it really doesn't get any better. It is unpredictable and gives you a paranoia about how everyone is getting at you.

It is strange but this week it feels like everyone is on my case. They probably aren't but work, home and even my inanimate objects are having a go at me :-)

Anyway, I will see how I feel tomorrow. I'm sort of in two minds quite what to do. I think I'd like to take the rest of the week off to repair my head - I will think about that tonight - I don't fancy going to work and having a go at anyone or biting some poor sods head off!

Decided on a short break from it

I have worked my backside off for a couple of weeks and had to react to last minute changes and despite all of these I have achieved the goals but at what cost. This seat of their pants stuff is downright dangerous. I mean how can a document be approved and after 19 versions (yes 19) go to the printers only to be recalled twice more for changes that is just someone changing it for changing its sake.

I know that the office is a bit of a throwback to the mid 20th century but sometimes it gets on your wick.

So I need to just walk away form it a bit. I haven't planned that out yet but I have some leave due and after all it is only a job. I really like it but the minutiae and the unbelievable pickiness sometimes beggars belief. Honestly guys - life is toooooo short for that sort of thing especially if you are running about 10 things at once. It ain't easy.

Dazed & Confused

A pretty damn good track from Led Zep but how I actually feel. Good friend has just had a confirmed Heart Attack - he has been transferred to the top UK Heart Hospital. I need to sort stuff out and suddenly, I am having "work trouble". What I mean is that I now need some serious recognition and respect and I am not getting it. I feel "used" at the moment and I don't like it - which signifies that I MUST be getting better if I am beginning not to be "nice" to everyone.

I think that a short rest period or period of reflection may be called for....

Not certain but I need to walk away or distance myself from it. Today I felt I was being treated like a "member of staff" and I ain't that and I'm far more than the sum of my title so perhaps I need to take myself less seriously for a short while. I need to sleep on that overnight. I may need a short period of reflection I think before I get back into what I used to be.

I hope the above isn't obtuse - what I mean is that I felt I was being undervalued and not taken seriously or just treated like a jobsworth and actually that is so far from what I am that it hurt me to think that someone may have thought that.

Negotiations

I'm thinking of working out a schedule as I am getting this constant tiredness at the end of the week - I mean it isn't surprising as I am sitting here at 11 at night and still working and will get up at 5:30 in the morning!!

However, I need to separate myself from the job a bit I am quite involved but I also need some time to fix this sporadic way of working that is going on and the limits of my physical ability to achieve as much as I do. On top of that, study has just started and I'd like to be flexible about time to do that as well. So it seems the best idea is to work around how this can best be achieved.

I am getting so many job opportunities through at the moment which is very surprising. There is a lot of work for an old experienced, wrinkled and battle scarred program manager. Want to go back Dave? Sometimes the money looks great but not certain about the ethics of it all.

Two of us getting a bit morbid

I got a call yesterday - a friend in Hospital, Heart Attack maybe? Met a friend tonight his wife just had her 2nd Cancer in a decade, skin, cured, one swoop and done. His friend, inoperable Brain Tumour. Another friend, lost his father earlier in the year, wife had a terrible stroke (no one thought she'd live) but she did and was getting back together, now second operation for breast cancer in two months. My cousin, breast cancer, chemo, possible surgery. It just seems to be one thing after the other and it just doesn't seem to be slowing down, more and more people you know.

I remember being told that the older you get the more this sort of thing happens.

I have to say that despite moaning a bit about how I am I really ought to be thankful that I'm getting better and slowly getting there.

Goodness - did we depress ourselves tonight.

I wonder if

The reasons I get upset easily is to do with the reminder of what happened to me or what "could have" happened. Today - the Great North Run - all these people running for their friends or family who have terrible diseases or have died etc. It really upsets me I get quite choked up - I never used to.

I wonder whether it is the fact that it reminds me of how things could have been? Do they remind me of how it is or am I just very empathetic with these people? Whatever it is, anything like that makes me choked.

Saturday and getting organised at last

I'm getting ready for my studies which start tomorrow - the office begins to look as if I could actually work in it. The troubles of Friday are behind me. So trying to just ignore and blitz my way through work isn't going to have any impact. Perhaps I need to consider a day off a week or something to get myself back to full time work and not to be knackered half way through.

I'm as upbeat as I have been and I'm still confident about December and the results. My next set of tasks are to lose weight again. It fluctuates massively and to get work sorted out. Once I can lose a bit of weight I should be able to fit back into my work clothes again which will be good.

Off to start studying now :-)

I shouldn't be annoyed but

Some people are so backward looking, hate change, can't see things hurtling towards them that they could easily avoid and wear their ignorance as a badge of pride.

I met one on Wednesday night - the most obnoxious type of ignoramus possible who was rude to just about everyone. Then there is the work "jobsworths" who just drive me mental. It was bad enough in the 70s and 80s getting people to realise that they had to change but we are in the 21st Century and these guys are hardly out of the 19th.

I suppose that I ought not to be too upset or annoyed - they haven't worked in the commercial world and the third sector is very different but sticking their heads in the sand is surely going to be the wrong strategy.

I must learn to stop, don't get angry and walk about a bit. I'm actually pretty pleased that I don't have to attend any more meetings with one individual as I'm not sure I could stop being sarcastic - a very unfortunate trait of mine.

Whackety whack

Thought so - the alarm went - I gave it a look - thumped the off switch turned over and went back to sleep for a further 3 hours. A UTI - now I don't think so, it is just an urgency to keep dashing off to the toilet. It isn't as bad as three or two weeks ago or even last week but it makes you self conscious (am I leaking) and it makes you worried about being caught out somewhere.

At least I can work at home and at least I can get to the loo in a few paces.

I often wonder how long recovery may take. I really shouldn't be hasty should I - I mean in just over 2 years I am cancer free and stabilised so I should realise things don't happen overnight.

Here it comes

Wow - how tired am I tonight and the urgency to go to the toilet struck at the Station meaning I had to get off my train to dash to the toilet thereby missing my train and waiting 30 minutes for the next one by which time I was almost bursting again! Not nice, not happy. Off to bed and see how I feel in the morning....

Dragged out of bed

Here we go again - mind you I am not surprised. I knew I was going to be struggling this week and when the alarm went this morning it was a bit difficult to get out of bed. If I can clear my workload today - and there is plenty of it. I might be able to work from home tomorrow. I also realised that tonight is the only night that I am actually in as I am off out tomorrow as well!

If I don't take the day off I'll end up taking it off for the wrong reasons I fear.

I don't like me much these days

I'm really not happy with the outcome. I am belligerent, confrontational, sarcastic, aggressive, overly assertive and not really someone I like anymore?

I've sort of fallen out with who I've become in a way. I'm left post this experience with this "outlook" on life and "attitude" that, frankly, you would never understand unless you had been in my position. A whole new perspective opens up to you when you have been through this BUT only you and your fellow sufferers will ever understand the downright frankness of your opinions, the ability to say how you see things without really thinking too much about how other people "feel" almost a lack of political correctness if you will.

I find it quite disturbing as I nearly had a word with someone this evening who was wearing his ignorance as a badge of merit. Everyone knew he was an arsehole but no one was going to tell him - I stopped myself in time - a good thing actually as someone I know actually knew him!

How on earth do I get back to being "normal" again? Do I want to be normal? Have I some sort of insight? Maybe if I have I should keep it to myself?

Unlike me

Slipped up on some details on the paperwork over the weekend. A keen eyed chap has put me right but how annoying. The trouble is there was so much going on this last week I am surprised I got it all done.

Anyway, I am off out tonight to the Jazz evening. Another 1 1/2 mile walk along the same bit of road I have already walked up and down twice today! With a bit of luck I will get a lift back.

October

My how time flies by - tomorrow is October and things get interesting as I should be starting my course on Saturday! This blog is coming up for its second anniversary and I have a list of things to do as long as your arm! If your arm is 12 foot long that is!

Now IS the time to get back to being organised and yet yesterday was a nightmare tonight wasn't a lot better - I finally got around to completing a 200 envelope mailing that I started on Saturday.

I'm working like crazy at the moment to catch up with the workload I have both at home and at work and whilst I am keeping on top of it - it is all just in time and there isn't a plan.

Maybe by the weekend I will have finally got organised.

At least

I didn't end up down at the pub but was late home and have a pile of work to get through.

I seem to be able to last enough time to get home now - last week was very different. The feeling of having a full bladder (even when it isn't) and finding yourself caught short is pretty awful I have to say. But there you go, it seems to have passed now and at least I don't have the worry and nervousness of that journey.

It was nice to finally meet George Emsden this afternoon. George has Throat Cancer last year and he documented it in his blog (currently being moved). If you thought my treatment was bad, I can assure you that I would have totally freaked out with what George had to go through as he had to wear a mask whilst under treatment for throat cancer.

Well we both looked well and in top form today!

Chaotic day and I hope tomorrow is a little quieter.

How on earth

I managed to get up this morning I don't know. I suppose it is only once in a while - that said I out again tonight from work! I will be surprised if I manage to get through the whole week burning away like this. I also need to work out quite how I am going to apportion my time too.

It is a bit of a nightmare working out how I am going to get enough time together to work and do the course coming up starting next week.

Monday wipe out

Getting back to work was bad enough - yawns and tiredness were one thing. I was meant to be home but at about 4:30 got a call to go and meet an old friend. We went for one beer - I daren't even tell you how many that turned into.... Enough I think. Things got worse as a bunch more people that I knew turned up and suddenly it was gone 9 and I was meant to be home at 6:30.

I don't want to mention what got said.... However, not happy as there was bad news awaiting me when I arrived home.

Paid for working on Saturday

Wow did I ever pay for working on Saturday today. I had to do a fair amount of work sending out letters and packing envelopes - about 150 in total. By mid afternoon - I had just managed to watch the F1 Grand Prix and then went to sleep for about 2 hours in total I guess. I knew I bought my comfy chair for a good reason :-)

I ought to get off to bed now and try and see how I am for the morning. I haven't actually been at work since last Tuesday even though I have actually worked for most of the week!

Fraught but a nice day

On Saturday it was a lovely day, the Autumn sunshine burnt off the fog and it was a busy day. We were on duty from 8 am looking after car parking, guiding visitors to various areas and then had to dash off to get ready for the meeting itself.

It was nice getting promoted and then we were once again busy setting up the dining area ready for the meal. It came as a bit of a surprise that we were to serve the wine rather than, as in all previous years, to just put bottles out on the table. However, we got that organised and managed to do that.

I retired to the bar with one of my guests in the afternoon and we had a couple of beers before his wife kindly gave me a lift home.

After getting changed I relaxed into the comfy chair and snoozed :-)

It is always nice that people you know come up and ask you how you are. It was a great relief to tell them how well I was and how things have progressed so well. This time last year when we were at Margate I was just about to go into Hospital to see how the second lot of treatment had tackled the precancerous biopsies of the previous tests. Well a year on, I suppose I can be reasonably confident in saying that I'm still clear! How great is that?

I really enjoy going to these events and being involved and I was pleased that it worked as well as it did.

I also got some good news that I can step down as Assistant Secretary of one of my Lodges as a youngster ought to take that on, I was surprised that they are going to offer me Chaplain though, it is a very senior job in a Lodge. Wow! Mind you it then made me realise that I am now getting to be one of the older people in the Lodge!

I needed that - not!

I had a small team assisting me and all was fine but we ran out of work and I checked that there was one thing left to do. So I sent the lads off home and 2 hours later I went home - they had forgotten that a load of things had to be put up and so I ended up doing that.

It is going to be chaos again tomorrow as I have only half a team to do the work needed.

Oh well, what is the worst that can happen?

Off out

It will be an interesting day today and tomorrow. I have to go and coordinate the Lodge members to look after a big Provincial Meeting. All very well but when half of them aren't going to turn up and you are at least 8 people short it is going to make tomorrow a very long day indeed.

I get promoted tomorrow so I am looking forward to that and I have a couple of guests for the lunch as well so I am looking forward to a day out. Last year it was in Margate so - you may recall, I went down with a friend and we had quite a good time down there. I have a feeling I may have missed the year before when it was again local due to coming out of Hospital and having had the 2nd TURBT when it should have been routine biopsies - I well remember now how rough I was too after that particular experience.

It will be nice to get back to having this one locally apart from the lads and I will be running around like mad things to cover all the bases.

Previous Post

It probably wasn't clear but the point is that when I get ill now I find it quite hard to take time off or to actually be ill. For 30 years I hardly ever had a day off in my life and to start now and to find that I am genuinely not well is difficult to take -it almost affronted me if I ever took time off, I suppose I come from that sort of background where you would almost be accused of malingering if you didn't go back to work the day after having your leg cut off etc :-)

The reality is that I've never had so much time off, I've never been so fatigued, unable to complete things when I wanted to and generally not been up for doing things. Sometimes I'd rather stay at home and watch the TV than get up and go out somewhere. When I do go out I get tired quickly, cannot keep up and often these days, leave early and come home early.

Now I realise that I must have been ill as I can clearly remember what it was like before and after and I can compare, now that I am gradually getting back to a normal life (whatever normal may be), one with the other.

It is clearly a case of the mind thinks it can do something and the body is saying no. Occasionally my brain actually works out that beforehand too. It is just so annoying that I'm not fit and I'm not as mentally and physically agile as I was a few years ago. then is when the reality hits home and the fall off of performance is surprising. I find it hard to believe that I have lost so much strength physically and indeed, in some cases, mentally.

I'm not sure I want to accept it though, surely you get back to where you were before? Maybe not? Two of my friends are still coming to terms with it years afterwards.

I have absolutely No Idea

How ill I have been or how close I was to things getting worse than they already were. I can guess that another layer of cells invaded would have been very bad indeed and a few more hundredths of a millimetre may well have given me a more difficult time altogether and perhaps a bit of a sticky end.

The trouble is, apart from very early on when you know you are going to die - believe me that bit doesn't last long as you realise what can be done etc. I have deliberately kept any thought of how ill I was or may have been and anything else at arms length. In fact it is a way of actively managing the problem that you implement a screen of normalness and you do that for yourself and for your friends too. It is more now, on reflection and with these odd bouts of cramps and other little things, that I find myself realising that I've never been this ill before in my life and all these things are surprisingly debilitating.

I'm still having problems even now believing I was that ill and so occasionally it comes as a shock to be told how ill you actually were. Not death's door stuff but pretty poorly nonetheless.

Appears to be getting better

I think that I may be getting better. Today started a bit roughly but now all seems to be back under some sort of control.

My legs are still sore and at least it doesn't feel like I want to keep having to run to the toilet and piss blunt razor blades each time.

I really could have done without that but I must continually remind myself that I'm not 100% yet it takes time and there's me thinking I can climb Mount Everest.

I hope that it is back to normal tomorrow and more so Saturday as I have to sit in a room for about 2 hours and don't need to be getting up in the midst of a few hundred people needing to dash off!

Not at work again today

I'm not there - a late decision last night was that I'd just give things a rest - I'm not quite right and the frequency of visits to the toilet are right up - sometimes as mush as every 20 minutes. In fact, thinking about it I've been having difficulty since getting back to work last week and the train journeys and also getting to work have been close run affairs. Perhaps it is a UTI - Urinary Tract Infection.

I'm going to take thing easy today and just take notes and if not better then I'll get over to see the Doc tomorrow and get something for it. It is always a possibility that you'll get UTI - it warns you that it is one of the side effects, along with cramps I now see re-reading further past the normal ones....

You think you are over this when of course you aren't really! I need to repeat the mantra "Take it easy" or "Slowly, Slowly"

Still hurting

I am on different statins - could that be what did for my cramps in the early hours. I'll take them again tonight but this is the 3rd one of this new batch I have had. Mind you that wouldn't account for last Thursday nights although that was milder.

Gee - I hope I don't get that lot again, it would be too much to handle. I really haven't felt pain like that before.

My right leg is still hurting and throbbing slightly so I hope that it is OK overnight and I can get to work tomorrow.

Get Out More

Tiredness does stop me getting out and about as often as I'd like but I feel that I need to get out a bit more than I do now. The problem is that I don't actually talk to many people during the day at all - although I interact at work it is business speak. At home I hardly actually have any conversation more than a few sentences long with anyone.

When I do get out I tend to gabble a lot as suddenly I have a release. This blog is great as it gets a lot of the stuff in my head, out of my head. The problem is there is so much stuck in there clogging my brain up that once the flood gates are opened I need to get it out. Poor sods who do take me out end up giving me a damn good listening to!

I hope that I'll be able to dump all this emotional baggage and random thoughts so that I can get on with my University Course in a weeks time.

Sooner than I thought

I got double cramp again last night, apart from the agony that these attacks inflict - I can hardly stand properly or walk this morning such is the bruising effect on my calf muscles - there is the suddenness of these. Unlike the fatigue (although occasionally that can just turn up) there is no notice at all - I just woke up in time to realise what was happening and I can't even begin to tell you what agony it is, I very rarely yell out in pain but this always make me scream out, there is very little else you can do. How I don't want to have these when I get older, the convulsions alone and trying to get to stretch the leg and rub the muscles to relieve the knotted bit is so difficult. No - not nice and it still hurts now.

Getting to work is almost impossible as I can hardly put any weight on my legs.

Whilst I am used to getting this occasionally it is again, I'm certain, one of the side effects from the treatment. I recall someone having this. I was also having minor bladder spasms yesterday too which was very disconcerting and meant I was in and out of the toilet a lot yesterday and travelling home was painful as I was waiting for the train to get to my station so I could dash off to the toilet. Every bump and sway of the train just added to my discomfort.

In fact, it has only been a week since the treatment so I should be expecting that. You do tend to forget very quickly about such things and tend to forget that the side effects don't last a day. Interestingly the treatment is actually at its most effective next March! How Bizarre is that?

Payback

I reckon that by the end of the week I will be completely knackered - so much is happening this week. I have been out two nights so far and have had two full on hectic days at work too. I am working from home on Friday for the morning then have to go and help set up Provincial Grand Lodge ready for Saturday when that takes place.

I am going to bed in a few moments as I can feel the tiredness coming on. I need to have a further blitz on my work as I need to start preparing for my Foundation Course next week.

I have no idea how I am going to fit this all in!

Going to be wiped out come Sunday

I have the week from hell. I am out most days and most nights, I have to arrange a big meeting on Friday for Saturday - at that meeting I get to work like crazy and then get promoted and then have a meal and then work like crazy and come home. I think that collapse into bed and not get up until Sunday afternoon is a very real possibility...

Out with Rotary tonight

Yes - I got invited out and have to leave in about 10 minutes but there is beer and food there which is interesting! I used to be in Rotaract in my younger days.

I am going as a guest and it will be interesting to see if I know anyone there - it is just up at my local.

The next lot of wide awake or fast asleep

Kicking in. It must have something to do with the treatment - it is 1 in the morning for goodness sake - it feels like I am jet lagged - I could happily go off to work right now but in an hour I'll be so fast asleep that a small explosion wont wake me.

I may curse these side effects but I suppose I ought not to really.

Interesting note I came across was that the Treatment I have just had really builds and is at its most effective in 6 months time. I would imagine that I could repel a Flu bug from 100 yards just by looking at it. At least the husky throat has gone away a bit now and the flu symptoms are long gone. Aches in the legs, tiredness and wanting to go to the toilet more often are still here.

The Office

Not the Ricky Gervais one, my one. Back in here today trying to finally get my head around this and get things sorted.

It needs a concerted effort though and I am going to have to be ruthless with some of this older stuff I have. Do I need it anymore? Will I ever go back to being an Engineer or Project Manager in the IT world? Probably not, best to just throw it out and get rid of it on eBay or local Charity Shop. It is all just clutter now and can be removed.

It still irks me though that I just take so long to do things these days. It is mid Sunday morning and I just haven't got half of what I planned to do completed.

Retrospective

I was going back over some old posts and remember that this was a song I heard just as I was about to go to Theatre. Yes I thought that too.....

A Day in the Office

On a Saturday and keeping the hell out of the way from all the nonsense downstairs. Remainder of kids are off to University today so there is one grumpy soul downstairs, the other one has a cold and I have no idea what is wrong with the other one.

I have plenty to do so I am locked up here getting on with things I should have done weeks ago and never got around to.

I've also realised that I have a number of vacation days available just to me that no one else has so I have to try and work out what to do with those. I was hoping to take some time off at half term but the school wont allow extra days and C has to work term time and A doesn't get half term off at all. It appears she isn't even going to be around at Christmas now - she will be abroad somewhere. L has just a few days off but is actually studying.

I keep telling myself it isn't everyone being awkward (why is that such a difficult word to spell) or bloody minded but it just seems to be that everyone is doing something and that we may as well just go and please each other and go away or take time off individually. I'm almost getting paranoid about it as bugger all has worked out for months and any plans I have are scuppered by things everyone else does and then they say "Didn't I tell you?" Well obviously not.

So the sanctuary that is my office - mind you they have managed to screw that up as my power supply for one of my PCs has gone missing because someone has borrowed theirs? My printer is getting worn out by A doing her coursework and apart from that the Ryder Cup isn't on proper TV this time so if I fancy watching that I need to shell out a small fortune to watch it. I'm blowed if I am doing that.

So all in all, I have had a miserable day up here, my PC went wrong as well requiring me to divert time to fix that and I'm still only just gradually managing to get through my work. It is like pulling teeth getting this done.

Penny Drops - it is all about me

Could it be that this blog is just one big ego trip?

I need to go away and think about that. I hate it when my brain does that to me :-)

Where are all the survivors

Why don't you hear about them?

Steve Kelley makes a good point in this blog I touch on it here and throughout this blog the one thing that Steve has highlighted and that I support is there just isn't enough out there that explains what it is all about and what it is like to have BC. Maybe that book in me ought to become reality - probably next year when there is more news?

I became aware recently that a number of quite inspirational blogs were inspirational as the author was rapidly approaching the end of their lives and had insights into somewhere I don't want to go for a long time.

When I look at the number of people who took the journey with me and were diagnosed around about the same time as me, there are only 2 who are cured, me in almost remission and another who has a recurrence that medically shouldn't happen! All the rest are dead. Gulp! I'm not counting the ones that have been diagnosed recently. there are 3 others and 1 who is terminal. However, hundreds of other people I know are fine.

A lot of Cancers are treatable, a lot of cancers are still in the realms of if you are diagnosed you will need a small miracle to walk away although I do know Lung Cancer survivors but some of these are pretty nasty things and there isn't much you can do.

Where are all the survivors? What are their stories? Is it just like getting Flu and after a while you get over it and that is it? Is it that, dying and suffering a lot are better press? It is difficult to know. I wonder if there is still a stigma attached to being diagnosed with Cancer. I feel it from people when I tell them and many don't know how to talk to you. They are lucid and interesting conversationalist until you mention the big C and then they get tongue tied and awkward.

Don't get me wrong, I'd find it difficult to strike up a conversation with someone who is dying of something, I mean what do you ask them? I'm British so - of course - I can discuss the weather :-) but for all sensible people out in the world - what are you going to say? How long have you got? What does it feel like? Aren't you going to miss your wife and kids? It is difficult n'est pas? So perhaps when people talk to me - "You look great", "How are you feeling?", "You haven't lost your hair?" , "never heard of it!". It isn't that they are being insensitive it is that it isn't within their experience, the only thing they know is that people generally die from cancer. They treat you warily.

The trouble is that people do survive, those who do survive don't tend to be telling everyone, apparently my Grandparents both had two lots of Cancer each and survived. It got my Grandfather eventually but my Uncle told me that - my parents never did, although I do remember vaguely being told something. There isn't a lot out there about surviving, they say it is on the increase and occasionally you get a story - Kylie Minogue, Ewan McGregor, Patrick Swazy etc. What I am talking about though are the massive amount of people who actually survive. Prostate cancer for example is something, if known about you can die with and not from! Bladder Cancer, as long as it isn't invasive you have a good chance of surviving it. You can walk away from many of these and yet for some reason, as Steve rightly says, you cannot find those stories out there and those are the ones you need.

Survival figures are OK but they are just statistics. I am going to generalise here and repeat something I said a long time ago. The places on the Internet where you find the most information and stories about BC are in fact the places you go when you need to tell your story and get an audience. There was nothing uplifting there apart from people's humanity to their fellow sufferers - there was pain and tears and death and disfigurement and it was all in all a depressing (there - I've said it) experience. I wanted to be uplifted, get some hope and try and work out which way was up and help myself to grasp onto something that no one seemed to be able to help me with. What was going to happen? how am I going to feel? What is it like? That is what I needed not "my treatment has gone wrong", "It didn't work for me", "I've got 3 months left to live" and so on.

I now realise that there are other reasons that you don't see such stuff. It isn't good copy and once you are on the road to recovery you don't need the therapy of writing it down anymore. I see it as my own way of getting the baggage that this cruel little disease causes amongst my family and friends and of course what it does to me off of my chest but at the same time to capture it, it sometimes is trivial ramblings, other times it is what actually happens, no reason to imagine that it doesn't hurt, that it isn't degrading to have things shoved up your privates, no reason to believe that some days it is as boring as life can be and that other days you are glad you are alive - just like normal really.

Maybe then that is it. Do many people just treat Cancer as part of anything else that happens to them and treat it as normal, get on with their lives, don't think too deeply about it, don't feel the need to write about it, research it or do anything else?

It appears that I have asked more questions than provided answers on the subject. I really ought to stop writing this and go and do some work.

The title sounds like an Airplane crash - "Where are all the survivors", they have to be out there somewhere, there just aren't many using the Internet - perhaps you are denied broadband access if you get the Big C??

Have a good weekend.

From one of the clubs I belong to

This arrived with a note of hope. See next blog for the downside.

Communications Breakdown

A really good track by Led Zep of course but more like the train wreck that is going on around me here.

It is getting to be a strange world of dancing around each other at the moment. I walk into a room, they walk out, they walk in and I walk out. There is no temper or animosity here just the need to get some space and not to fire the snipes in which aren't particularly helpful.

I can't say things are going great and I'm not sure how the weekend will be as "A"s boyfriend is off to University this weekend as are many of her friends. Everything is just a little on edge at the moment and frankly I have no idea how it is going to pan out by the time everyone has stopped dancing around their own particular issues perhaps I will get some indication of what the hell is going on.

I have a massive week coming up and need to be getting on with loads of paperwork, clearing my office and organising people for a major meeting next week. These are things that have just piled up and now are urgent when they didn't need to be and could have been tackled earlier. Oh well, I know what I am doing this weekend. Loads of work and keeping my head down and probably staying in my office the whole time.

It isn't over until the Fat Lady sings

No idea where that comes from but it sounded a fun title:

I was asked a number of questions over the past 2 years or so. Here are a few:

Q: Did you think you were going to die?
A: Yes for about 2 or 3 weeks until I went and found the answers to most of the questions that needed answering.

Q: How can you let people stick things up your (Penis/Prick/Todger)?
A: It is a bit like this - what happens if I don't let them? You die!! Simple choice really

Q: Why are you so happy all the time?
A: Because life is too short to be unhappy. Because I am probably cured. Because what is there to be unhappy about - I'm alive. Any variants on the same are acceptable.

Q: How can Cancer be funny?
A: You have to have it to see the funny side. I'm not being disrespectful you do have to laugh at the things that happen. if you didn't you'd cry. I still remember with eye watering clarity kicking my urine collection bag across the ward and then realising it was attached by a pipe to my catheter which was in turn inserted in me. Now it wasn't that funny then but it is now.

Q: Do you think you will die of Bladder Cancer?
A: No I will die when my heart stops working! Actually I don't think it will be BC, maybe another type or some sort of heart problem (although I am on preventative drugs for that). Natural causes like getting old would be preferable.

Q: Aren't you annoyed that you no longer work in the IT world?
A: Don't forget I worked in IT in the Finance world - look what is happening now. Glad I realised that it was a shallow and non honorable towards the end and got out. I sometimes miss the wage packets and all that but I don't think I'll miss the two faced nature of the business these days.

Q: Working for the Third Sector has to be tiresome?
A: No, far from it, it is actually (but don't tell anyone) the best job in the world. Where else do you get to pull kids out of poverty and make sure that they aren't singled out as different. Giving Kids the opportunity to an education is the best work in the world - no it really is. Imagine using all my years of experience to make sure others get a good start in life. The best thing I ever did. I didn't plan it that way either!

Q: Why go for a Degree?
A: Why not. I never got the opportunity when I was young. I've had the goal of getting better. That is almost achieved now - I need another goal to be as stretching as getting better. How about going for a BA (Hons) Degree?

Q: Why do you keep banging on about collateral damage?
A: There is no doubt that I have made new friends through being ill but also, old friends haven't been able to cope with me being ill through whatever reason. Some have drifted away and may drift back. Prejudice is inherent with Cancer (not sure why) and people who haven't got cancer deal with it in different ways. You mustn't forget that people of my age rarely saw anyone survive cancer, or if they did, it came back and got them later. Of course things have improved but your subconscious carries these prejudices around. Back to the point of you'll lose and you'll gain some friends and you'll also not realise but you change yourself and so people wont recognise you for who you used to be and you may lose them through that.

So now think how those who have to live with you all the time react to you changing, you being ill, I'm sure they may have thought I'd die too. What does it do to them and maybe you come out changed and they don't. This is where the collateral damage concerns arise. You can try and minimise it but just think of the strain that it puts the family under. At the time, the last thing I'd be considering is what is my illness doing to them - I am fully concentrated on fighting my own little battles.

Cancer is a physical disease with the capacity to really screw around with your brain :-)

I know I SHOULD be at work

But I was tired and not with it at all this morning. Not the beer, only had a couple, more the brain going into overdrive on a task I now "own" that needs to be sorted pretty quickly.

I have so many silly little things that need to get done that I had the whole lot going around my head overnight and now I am drained thinking about them all.

At least I have a clear way of addressing these and a day at home will straighten many of them out.