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.