Awake

That was a good few hours sleep, broken only by a numpty phoning me for something he already knew about!

So now showered and dressed and have an hour and a half to potter about the place and get myself ready, my bag packed, attend to last minute e-mails and then I can check batteries, run through my check list and take myself off to the Hospital.

I'm feeling calm and in control now, it is often the way. You just have to accept that this is it what it is going to be and make the best of it and whilst the worry precedes it, this time tomorrow it will all be over and in fact in less than 8 hours it will be over so it is just like a day at work - the one that seems to drag forever. Waiting at the Hospital can be a real pain as time just drags away. You are almost relieved when the blue coats come and get wheel you down to the Theatre.

So, apart from a slight stirring of my stomach (not sure that is nerves or the porridge earlier!) I'm sort of OK about it now.

That's Breakfast Sorted

That was it - a bowl of porridge and a cup of coffee - and my pills. Going back to bed to lie down for a while and let the chaos that is the morning with 2 teenagers and Mrs F all trying to get ready on time unfold outside and around me :-)

Once they are out of the way I can have the house to myself and then get ready. More later.

Things that cheer me up

There are some really funny Demotivating Posters here at Despair

Here we are again

Preparing for the morning, the early breakfast, the walk into the Hospital (I can walk there in about 20 minutes I suppose) and the other stuff. Waiting, preparing, wheeling, coming around, p*ssing razor blades :-)

I suppose I shouldn't have had a little shot of scotch with my coffee but hey, why not? It all helps to settle me down for the night. Tomorrow will be here soon enough and I'll have my music and breathing and self hypnosis to get me through the waiting.

The back of my hand is throbbing already - I wonder if they'll get the damn thing (cannula) out earlier this time? I wonder if they'll keep me in over night and at the end of the day, well, I suppose what will be will be.

It isn't any use worrying about these things but it does play on your mind. You know what is going to happen and you're back on the Roller Coaster my friend. You don't get off until they say you can. There is nothing worse than being out of control when you are a controller yourself!

Home from work early

I was sooo bored - I finished my work early on, got the check list finished and posted all my internal Christmas Cards. I decided enough was enough and the best course of action was to come home so did an hour early and I'm quite pleased I did. Had a chat and SMS message and a nice comment on previous blog entry and I'm sort of going to keep busy here so as to take my mind off tomorrow as much as I possibly can.

I think a number of people were startled that I wasn't going to come back to work before the New Year but hey, maybe if I feel good I will go back if I can face the long walks either end of the station. That really is the test of how it will be. There are some staff parties, not least of which on Wednesday which would have been great to attend but needs must and this is far more important to me than missing a party. There is another couple in a week and a half time. Maybe those ones?

We will see how I get on. It was sad to say goodbye to some of my colleagues - I don't think they knew I was going but I didn't broadcast it. Some people know. At least they'll get their cards soon and I have laid on a nice surprise from Harrods for them a little later in the week as a thank you for being great people to work with. I'd liked to have spent some time celebrating with them but again, that can wait. Who knows I might have some really good news to celebrate and wouldn't that be fun if I did. We could start 2009 off on a positive note. I really hope so.

Dreams and schemes and things to do

I haven't mentioned the dreams for a while. They are still around and still as real as ever. It can be a bit difficult to distinguish what on earth is going on with these as they are very realistic and generally quite plausible. The bizarre thing is that I'm placed in a different setting most of the time but with people I know well.

As Tuesday approaches so I grow more anxious, I can feel it growing and it is controllable but I know I will be a bit less my normal self tomorrow. It is a dread feeling and who amongst us looks forward to actually going into Hospital? I can control much of the feelings and the fear and in many ways I can convince myself to go through with it and with the little self hypnosis stuff I have done before it will be OK. Of course there is still the nagging doubt at the back of your mind, a general anaesthetic, even if it is for a short while.

There are still things to do and I hope to have worked out how I am going to do them considering I wont be leaping about much or be driving the car for a week or a bit more. I have to complete sending out my cards and newsletters and to do a few mass e-mailings. This time of year is always so busy and I normally have a bit of time on my side but this year - it is all slipping away :-) I'm sure it will all get done somehow. If it doesn't - well tough I suppose. No one is going to die!

I'll just have to see how I feel after I come out I suppose. Oh well no use worrying too much about it for the moment, just get on and get ready I suppose. More later I'm sure...

Sword of Damocles or something else

This next stage is all a bit strange. If it is clear and you are being checked it is because unlike actually having the cancer cut out you have cured it and it has gone away. They check you with decreasing frequency as long as you are doing alright.

What it means is that this is with you all the time then. You are effectively clear and the cancer hasn't returned and the longer you are clear the less likely it is to recur. So the odds diminish but the thought of having to go through this lot again is a sobering thought.

We were out on Friday and they have, most unusually a Cigar bar - up on the roof of the restaurant, it has heaters, blankets and all sorts and I was really tempted to have a cigar but did very well I thought not to even have a puff. It is a powerful deterrent to remember that there was every possibility that smoking in the past may have contributed to my bladder cancer in the first place.

I am hoping that all is clear as it means turning over a new page, yet again, in this ongoing treatment and recovery process. Perhaps I can turn back to some long term goals and to shake off some of the baggage that goes along with it. Life has been put on to pause for 2 1/2 years so far and things really need to move along a bit. I wonder whether the worry of recurrence can be overcome. I suppose with time it can but I have a feeling that there will always be a nagging voice in the back of my head. At the moment any little ailment is cancer! That is just the way your head works.

MP3 player locked and loaded

I've loaded up my tunes for the Hospital and they are ready to go. I put some of the original ones I had as CDs on here. By that I mean the ones I took in with me the very first time I went into Hospital.

I need to remind myself that things were a lot grimmer then than they are now and to get some balance into my way of looking at this. There are some other new ones on there too. I normally end up playing the whole lot in two sittings before and after the Op and at 1Gb of tunes - about 3 or 400 that takes some doing.

Need a laugh - this cheers me up EVERY time!

NOTE - This contains some "Adult Content" ie swearing so be warned...

Blimey

What a day - fantastic meal - toss pot of a waiter - "we are too busy to do this and so booked we can't do that". Bloody idiot - exactly who is the customer and pays your wages?

Don't start me on that. Had a great day - friend with arm break was there but nasty two place break - yuk. We had a lovely meal which could have been better had the head up arse waiter hadn't been quite so anally retentive. I almost asked him during the quiet periods ahead where he felt the custom might come from. The food was great, the company was brilliant and then I got the train which, half way home announced a body on the line which held us for a while, reversed us back up the track almost back to where we had come from and then after 30 minutes messing around to go the other way reported that said "body" had been removed and we recommenced our journey home wards. The strange thing is that the trains from this particular London terminus always seem to be filled with the loonies and left overs. Tonight was no exception. At least I got home in one piece.

Tetchy and belligerent

I must be getting a little bit nervous and up tight about next week as I am being a bit bloody minded with people at the moment and then realising a little later that I have been terse or grumpy.

I don't mean to do it but I can definitely feel this sharpness with people and my language was a bit more "colourful" that it has been of late.

I must calm down a bit more. I suppose I can blame it on what is to come but I should be able to control my emotions a bit better.

Bit of a shock to

Turn up tonight to a meeting and find my friend had fallen over and broken his arm...

So he wasn't there which was a bit difficult as he was going to drive me home :-)

Luckily another kind soul offered to get me home. Somehow I was missed off of the list when he sent out the news and so I was the only person who didn't know.

I am meant to be having Christmas Lunch with him tomorrow and I have no idea if he will make it as he will only have one arm to eat it with!!!

Oh well, I'd better go suited and booted anyway...

Still doesn't make that much sense

So a night sleeping on it and it still didn't make it any clearer!

It is funny how these things come up in conversation though and how you get a good lecturing from someone and take it in, analyse it and throw away the parts that aren't relevant. Everyone's an expert on my situation apparently.

I got a phone call saying that my friend wasn't going to the Jazz night tonight which is good - it is bitterly cold and a walk back to the station tonight might have sapped my enthusiasm. At least I'll get one night off this week!

The days are getting eaten up fast. i spent today doing corporate Christmas Cards and labelling up envelopes (yippee). 2 1/2 days left to go work wise.

Spoke to my friend who had his Prostate bored out - he did a silly yesterday and has ended up lying down again. That's the trouble - you can't see the scars and you feel fine but just try and do anything like lift something or stretch and your back to square one.

Excess

I notice that my tendency to go from quiet contemplation to excess is a trait I had not expected as an outcome of the treatment. From this I mean being a hermit one minute to being the "life and soul of the party" the next. As an INTJ that is a pretty normal state of affairs in some circumstances and to "self destruct" at work is a common problem I have had to deal with over my whole career. Generally, I self destruct somewhat in advance of the destruction that arrives some time afterwards.

Tonight I was reminded that I should only be "self destructing" at work and not at home. I think I understood what that "warning" actually meant although I am not entirely convinced I know what to do to stop that level of destruction happening. I talked of collateral damage some time ago now and it occurs to me that the conversation I had this evening alerted my friend to mention that there had been a parting of ways, minds and wills and that I ought to do something about it.

I curse being an INTJ for one reason, and for one reason only. That is that I don't see this sort thing coming at all. If there is no logic to things then, like good old Mr. Spock, I don't get it!

Apparently I need to be working harder at keeping the family unit cohesive. As if I haven't got enough on my plate :-)

Reminds me of the time I went to the bar to order some drinks. There were a good ten or more drinks on the bar and the barmaid asked if I wanted a tray. As usual, being me I said "Don't you think I have enough to carry without a tray?"

Sometimes, i don;t get it. After all, I am the one who has been ill and to also find that I should also be the one to be holding it all together at the same time is a bit strange :-)

You do a hell of a lot when you have cancer and some of it is actually telling people who are worried about you how they should behave.

Oh well - I will sleep on this bit of advice and see if it makes any more sense in the morning. Frankly, it makes bugger all sense at the moment.

Doctors - A Funny Breed

The nurse is always great and we now know each other and she is very good to me. I had all my tests ECG, MRSA, did all the liquid tests and had my blood taken. The sample was OK and that was good news. They do a check on your urine then and there but not the other one which goes of for micro analysis. I am told this one is part of the BC screening they are now able to do and it is, I imagine, a trial.

Anyway, I don't like having my blood taken and she was very good and it was all over and done with pretty fast so that was OK.

I have no idea why the Doctor should worry me but they approach you and check you out as if you have the plague. I kind of forget that they have to ask a lot of questions but it is amazing to me that they ask the same questions every time. Surely if they looked back at the last set of answers (only 6 months ago) they would find the answers and just need to ask if anything has changed.

I've been given loads of stuff for the next time I come in - I did say that I sincerely hoped that if they found nothing I wouldn't need to be in again.

Anyway, I have calmed down a bit now. This time next week I'll actually be in and possibly being "done".

That's one hurdle behind me one more next week and then lets see how it goes.

Up and about early

By now I'd normally though be having a coffee, swallowing my pills and generally getting ready to go to work.

As it is I am just about to go downstairs and have a coffee now, plus plenty of fluid so I can pee before I go and when I get there.

I don't look forward to this but at least it is a 9 am appointment and so I won't be hanging around. I can't believe that my arm and back of my hand ache - what is all that about? It really is the most bizarre thing. It is as if the body is getting ready for the needles.

I'm not feeling as anxious as I normally do which is good, I don't feel that bad at all. BP is 126 over 87 which is OK I suppose considering it will tend to be higher on a day like today.

Let's see how things transpire.

Pre-Assessment

Well - the day is fast approaching and the assessment beckons. It isn't that bad I suppose but I have to get wired up, have blood taken, Blood Pressure - always a laugh and different urine samples one when there and one I take in. Sure make a change taking the p*ss out of myself I suppose :-)

This is just a precursor to the main deal a week later. I decided not to go our tonight for a few beers, tempting as that was. Mind you I am out every night this week I just discovered. Out with my friend V and M tomorrow evening, Jazz on Wednesday, Thursday committee but always a beer there and I may see my work colleagues. Also out Wednesday lunchtime and Friday I have been invited to a rather special looking place in Belgravia for Lunch - WOW!

I'll be looking forward to going into hospital for a detox....

Tension building

Here we go the countdown to Tuesday's assessment and then a week to go after that to the appointment and the tension mounts. I'm doing so many things at once that it should be distracting me but it isn't really. The problem still is that I have so much to do and it is being squeezed into a very small amount of time indeed. I've managed to catch up on my Uni work and to have finished my Christmas Newsletters. As so much can be done electronically I intend this year to do more of that and less of physical sending of cards. It is a nightmare and so those who have e-mail addresses will get newsletters that way.

It is late again and I must get off to bed - I don't want a third consecutive Monday off of work!

No one likes

being in Hospital do they? I find it all very stressful and it isn't just on the day it is the leading up to it. It is all coming sharply into focus now and I can feel the fear and the smell of the place and I'm beginning to build myself up for it.

Pre-assessment isn't too bad - at least I know what to expect and I know the ladies in the department. I have my BP under control and I am under control. The Hypnotherapy sessions were really useful in this respect to re-programme my mindset but of course it doesn't take away all of it but helps as I can happily take myself into and out of the Hospital on my own now.

I'm still convincing myself that this is the last time for this particular heavy duty operation. I might well end up having flexible cystoscopies which aren't particularly pleasant but perhaps a little less of an impact than these. I suppose I need to balance this all with the fact that I don't have cancer anymore and I don't have to have the regular insertion of tubes for BCG or any other such thing. It sounds like I'm not satisfied but it is still all rather unnatural isn't it :-)

Not quite as planned

I had a long lie in this morning - in fact everyone did and this afternoon - full of good intentions I went to study my section for OU and promptly fell asleep in my chair! I had better get to it tomorrow and try not to do that again. Of course it is now 00:30 in the morning - I am wide awake and so heaven knows what tomorrow and Monday are going to be like. It always seems to be Mondays that I am whacked out and can't get up.

Strange stuff.

First Result from Uni Course

Wow - I'm pleased with the first results back from my assignment. Unfortunately the marking system has gone AWOL and so I don't know the actual score but the comments are good and there are just a few areas that could have been worked on so I am pleased with that.

I need to spend some time on that this weekend to catch up this weeks subject. A mixture of Madonna and Callas - all about the "Diva" quite interesting in terms of subject matter but also quite challenging - just try and think to yourself how on earth could you compare these diametrically opposed singers and then arrive at the conclusion that they are both Divas?

No wonder my brain spins :-) No bad thing I suppose.

Well I'd better go and do that along with a whole haggage of things I have in my in tray.

Enjoyable Evening

I was out at the Old People's home for our Lodge meeting. I am on the committee of friends and in this Lodge that goes around and visits the many homes around the country.

I was sat next to an older gentleman who was having - somewhat similar problems in the same locality. I was surprised how much I knew about the subject. A couple of the other guys local to me were squirming when the subject of a TURBT came up. He said it not me :-)

Anyway, I had a really good evening and was home by 9 pm which is good. I haven't been to the Lodge for many years but I got an office this year and will certainly be going and travelling around now. I missed a lot because I was ill and I used to travel a lot and never be in the right place at the right time.

I feel a lot better when I have been to a meeting like this as you feel lifted and cheered up by meeting so many really nice people.

A Year to the Day

That I quit that job. It is amazing that even at that time it wasn't bad news. A week or two later it all went pear shaped though :-)

Time just rockets past doesn't it? The only good thing about it was that I was able to distract myself from the troubles I was having and to work flexibly. The more I think about it the more I miss the flexibility I have had at work for the past 15 or more years. I find the 9 - 5 mentality quite strange and they find it strange that I would happily pick up e-mails that arrive in the evening and work on those then rather than let the lie around for a while.

We go back to the conversation I had with some people the other day about just doing the daily grind and not having the job types I used to have which were relatively high stress high adrenaline rush type things. Maybe there is a compromise - I just need to find it I suppose.

I struggle with this a lot. I really don't know if I can stomach this job for another 14 or 15 years. That's the problem, committing to it.

Missed that

It was Thanksgiving yesterday - so belated Happy Thanksgiving Day. When I worked for DEC of course, how could we forget - the place almost closed down.

Off work today and I am deciding what to do with myself... I have a Lodge meeting later this afternoon but whether I want to drive or not is the thing. It is a fair way away and I can do public transport to it - a bit convoluted but it can be done.

And so on to the next batch of things to be done before next week's assessment (can it really almost be that time already) and the week after and that particular meeting with destiny.

As usual loads to do, not a lot of which can be shared and it is my time that needs to be managed. I have - I think - done all my Christmas Shopping (thanks for the Internet Berners Lee) and somewhere in this I have to produce two newsletters and do all my Christmas Cards.

Time is the one thing that is going to give me grief in the next few weeks. I'm sure everything will get done it is just how I manage to do it.

I'm feeling a little anxious / nervous which is always the way leading up to going to get violated in the cause of science and survival. It has to play on your mind and the back of hand is throbbing already where they normally put the cannula in! Psychosomatic or what :-)

Day off tomorrow

Again. Well I have three days - no make that two left to take and somehow I have to make up for them somehow. I'll manage something.

Tomorrow I fancy a sleep in and then if I can to do some work on my course and I have a load of stuff to do for the Lodge meeting....

It really shouldn't be down to me but it will be.

At least I don't need to get up before I go to bed tonight :-)

Pants

It was a boring day really. My friend is now off to have his Prostate sorted out - he is getting a reamed TURBT to sort out a restriction caused by an enlarged Prostate. I lent him the book my friend gave me - "the book of Piss" which is most amusing. I hope he finds it to be so too.

I was bored because I've done a lot of preparation work and got the handover sorted and I'm just waiting now - everything is ready to go but nothing has arrived for me to do anything with.

Tomorrow I plan to spring clean my desk - well there's nothing like starting it early. That is if I stop yawning long enough.

Oh yes - the dreams - blimey the one last night was so real that I was having real difficulty when I woke up working out why I was in my bed and not up the road with some friends listening to a terrible account of how someone had died...

Weird stuff but often get this but more noticeable these past few years...

Good News

On Steve's Blog he mentions that HK in Canada has non malignant tumour so HK will be going onto BCG again and be kept an eye on. Good for HK and let's hope that one resolves itself.

This BCG isn't the nicest thing you've ever had done to you but it sure does seem to be effective.

Early to bed early to rise

Makes a man healthy but red in the eyes!

Tuesday - back to business

Everyone wants to know how you are and when you tell them you feel like poo it sort of wipes the smile off their faces a bit. I find it difficult to say "I'm alright" because clearly I'm not.

I have a hint of trouble to come if I go permanent as there is a back to work interview each time - I don't need to do that as I am a consultant and don't charge them but it is funny as I said to the boss - "if I am off as much as this at least I'll get some quality time with you once or twice a week!"

I did explain that they might like to reconsider a permanent role as this wont go away in the short term.

So other than that it was the usual funny day. Exasperating as ever as I was asked why we were right down to the wire on the deadline and that I should have started things earlier. I explained that I had started things earlier but this had just given more people the opportunity to comment and alter the work I started two weeks ago. In fact I hate Parkinson's Law - as a Project Manager it is my enemy. Parkinson's Law states that if you have three weeks to do a job you will expand the time to take the full three weeks.

Anyway, onwards and upwards at least that is the last deadline out of the way for this year. Except the Christmas Cards - which incidentally I started in July and that only got agreed two weeks ago - see what I mean! They need to arrive, be signed off and posted in the next few weeks. All the Labels are ready on my desk I just need the cards. I don't fancy signing 500 odd but at least I got self sealing envelopes!

Blah - Monday!

What a day - got home after practising for our Banner Dedication in January. All the usual suspects were there, the people who turn out time after time and will actually do a job for you. The others - well underwhelmed by their response. It is annoying that I have little time left when I am fit and healthy to get everyone ready for a once in a life-time ceremony and yet they wont turn up to make it look half reasonable.

It is the trouble with all clubs and committees that some of you end up doing all the work and those on the outside look in and cast stones but don't actually do anything themselves! Such is the way of it.

I do it becuase I care - I'd rather take a back seat as I have been doing this for years but there you go.

A low day today

I don't like taking time off work but I know I must do it. It would have been useless me going in today like I was - I'd have been a asleep on the train and potentially at my desk too.

I've done what needed to be done today whilst I have been sat here at my office desk and apart from one thing that I hadn't banked on (forgetting where I stored a document - which is very unlike me) no one died!

I tend to work in the charity sector, much as I worked in Financial Services, IT and business; at breakneck speed, everything was resolved as quickly as humanly possible. Generally the customer was the one who needed things working so they could make the money which eventually meant that you got paid too.

It is a LOT different. No one expects that things get turned around in minutes as we have finite (not infinite) resources but I still do my bit to my old speed and often it isn't needed, no one was expecting it and other people who have to input have their schedules too. I haven't learnt to slow down. Not a bad thing as tomorrow I can catch up I suppose :-)

Why else do I feel low? Letting other people down is one but I'm not really and if I don't work I don't get paid so it isn't as if there is any sick pay involved. No one has been let down and I think it is just me, being - well - me really.

Others? Grey old winter day outside, inside not particularly warm either, the tasks are getting done but it is drudgery not enjoyable. I think it is just like that at the moment there isn't much to brighten up my day and the day of reckoning is on its way - 2 weeks tomorrow.

Back to the pile of paper on my desk which is going down slowly.

Another day off work

I cannot believe how tired I was this morning, I woke at 5:25 and had a thick head and was so lethargic. All I wanted to do was go back to bed which I did after e-mailing the office.

I still have dull aches over my eyes - perhaps I have a small part of this cold everyone in the house has had and I'm just having partial symptoms because of the Immunotherapy?

Maybe I was just battling with the post before and battling things out in my head?

Anyway, I'll do a little work from home today but other than that take the day off - I can catch up tomorrow as long as I keep my eye on the ball. That is that I have 10 working days left before I go into Hospital.

So how are you feeling?

Strange would be the nearest thing to say about how I feel. I am not sure - I feel quite peculiar - I think it is to do with the letter actually rather than anything else. It gets you to thinking again about what is going to happen - my left hand started throbbing as it knows it is going to get a cannula shoved into it.

My dreams have become very real again recently, long coherent and most life like although they aren't particularly worrying they are extremely realistic and I can wake up imagining that these things have actually happened.

It is a most unusual feeling - sort of not ill, not right, a little light headed and light bodied (if that makes sense) and I wonder if there isn't a little bit of fear in me. There are always terrible thoughts going through my head when I stop to think about things and being wheeled into Theatre is a pretty bad time and so there is a nag going on in there as well - there must be some doubt and I'm guessing it is just the build up of emotions the nearer I get towards the event. There'll be the worrying afterwards, of course until the results are known and who knows, dare I think of having no further maintenance - that would be the best result ever.

As I typed this I thought of what I said about the terrible thoughts and they aren't as bad as they used to be but they are still there. The voices still nag at you and taunt you, your mortality and your equilibrium. I've said many times before that I am far more emotional these days than I ever was before and to stop and think can be almost tearful, certainly a choking feeling and I'm still not strong when it comes to sad stories and tragedy despite dealing with it at work it still shocks and upsets me far more than it ever did.

Anyway, off to bed and see if I can shake this off for the week.

Letter Arrived

Today - a bit bizarre to arrive on a Sunday although it was DHL or TNT or some such.

Pre-Assessment on the 2nd December - Operation on the 9th December. All very clinical stuff these letters :-)

So at least that is all set now. I feel a lot better and worse all at the same time! Oh well soon be over I suppose.

No letter?

I've not had confirmation of my day in Hospital yet? Mind you that is often the case. I suppose if I don't have it by Tuesday I ought to ask as I would need to be assessed on 1st December.

My colleague goes in this Thursday for his operation and then won't be back to work until the New Year and I am guessing that is true from my side too once I go in, in reality I won't be back until the 18th or 19th at the earliest - I will have to see how I am - we tend to close down for the two weeks (almost) over Christmas and the New Year and so the 5th January is realistic for me too.

I am expecting, dare I say it, to be clear again. It will be bitterly disappointing if it is anything different. The next month or so is a no-mans land as I'm still not sure what to expect. This time I am far more confident of the outcome and yet there is still some doubt. It nags at the back of your mind that this, of all cancers, has a nasty habit of coming back. It is treatable but I really could do with getting back to being me and moving on again. No matter what you think this hovers over you all the time and you are faced with (as a friend put it yesterday) FUD - Fear Uncertainty and Doubt.

If the uncertainty goes then perhaps the other two will fade away and I can get on and make some decisions in 2009. Decisions? If things are clear and I have the gift of more time - what am I going to do with it - time that is?

What a week that was

I am now very tired and off to bed - I have no idea how I managed to get through that lot and last night I didn't get home until very late. Tonight I have snoozed on the train and in my chair and I still need to get to bed.

All in all it hasn't been a bad week at all and I am happy that I got through it and managed to get to work every day. Only two weeks to go before the Operation and time is oozing away fast. Tomorrow is going to be interesting as I need to catch up with my studies (again) and get other items finished that are now urgent.

Every day this week

I will have been out every evening this week come Friday. I didn't plan it that way - it has just happened like that.

Someone asked me to help them out - I said yes and suddenly I am up to my eyeballs and beyond with it. Oh well, all in a good cause.

The trouble is I am yawning like crazy so will take myself off to bed and hope for a good night's sleep.

A came to work and took some photos which was great - nice to see her using her particular skill.

As for me - my colleague was back from his awful time. He is having an operation next week and we wont see him until the new year. At least he was in reasonably good spirits despite the fact he has to have a serious operation to come. It isn't a million miles away from a TURBT so I showed him the picture from a few days back which amused him somewhat.

As if to counter the previous comment

I was out with friends and spoke of this concern that I am just turning up and doing day to day (menial tasks).

The rough interpretation was "Why not take the sh1t for a few years? You've worked hard all your life and got ill to prove it, why not take it easy, do the 9 to 5 and retire?"

You can see that at 51 years of age, no mortgage left that it would appeal and yet, I don't have the capability to be a drone - I never have. I wonder what I should be doing in this situation.

I continue to fight with these demons - I ought to be doing good things with all of this and yet to 9 to 5 and take the money isn't my style at all, it isn't in my make up (not mascara and lip stick Flocky Bicep!!).

Too late to moralise now but it needs consideration as I still love the job but the menial sometimes really hacks me off.

I am not a number

I am a free man. The Prisoner - excellent. No idea what was going on but there you go. It makes as much sense as my day to day these days.

I'm getting the feeling that I am being treated a bit like a clerk. I think I am changing my attitude a bit - I mean I can put my hand to anything but I'm not sure that I really am ready for being employed again. Well not if I'm going to be "clerking" rather than using my 30 years of experience for something a bit more - well - useful.

Previous Post

I saw that picture on Steve's blog and it still "gets my attention". It is a brilliant piece that only fellow suffers can truly appreciate. The only way to show it any differently would be to have razor blades flying out :-(

If you could put a thousand words and expressions into a picture - that would be it :-)

I am getting myself ready to face another week. It appears that my work colleague may be having something similar (in the same locality) done to him which will take him out for 4 to 6 weeks and with me also going into Hospital and unlikely to get into work until the last few days of the year it could mean that I'll be having a very interesting time indeed in the next few weeks.

I have about 6 weeks work to fit into 3 weeks and that should be interesting. Time is getting booked into my diary and I defy even Stephen Hawkins to be able to sort that out for me!

Oh well, best get ready for the early morning start and see what awaits - I have no idea how I am going to fill in for two people for the next three weeks though :-) On top of University work and work for the Lodges I suddenly realised that I haven't started my yearly newsletters to family or for my researchers of the family name and I haven't even bought a Christmas card or present yet either. EEEEkkkkk!

Here it is

What I will be doing in December for about 5 days or so :-(

Accepting the situation

I wonder if you are meant to just accept that you get tired and out of condition and all the other baggage that goes along with this?

I seem to be constantly moaning about this that and the other. Not that I was ever a hypercondriac, far from it, I hadn't really been ill in 30 years and couldn't understand how people could get so ill all the time (yes - now I know).

So whilst I am writing in here all the day by day symptoms and side effects it sounds like a constant whinge to me and I don't mean it to be. It occurs to me that there is a way back from all of this and you just have to grind away and work at it all the time to "get back to normal". Perhaps the statement you often hear "life completely changes after diagnosis" is exactly how it is. Everything changes and it doesn't ever return to what it used to be like and that is why they say it!

I am sure of one thing though; I have the luxury of looking back a year and seeing what happened (in fact 2 years). When I look back on how I was a year and then two years ago the progress has been markedly improved, the outlook has gotten better each year. In fact it is funny as it was a year ago the old business self-destructed - looking back now I don't think I have ever seen such a performance where a guy that effectively owned the business told the investors how it was. Utter disbelief around the table as it transpired that the guy was morally corrupt, the business didn't own the product at the core of the service and that there was next to no money in the account. The more amusing thing was there had been a huge launch party 6 months previous and a massive sponsorship deal the day afterwards at a prestigious annual awards party. You couldn't make it up could you :-)

So two years ago - not sure whether the treatment was going to work. One year ago, elated that the treatment had worked and got a clear, but was disappointed with the business I had worked to build betrayed me and the investors. This year, I really should be even more elated that I remain clear and that this could be my last operation coming up.

So to the original note - should I accept the situation that I will be like this ongoing? Of course not, I really find it difficult to have any stability when one day I can "climb Mount Everest" and the next day I can't get out of bed although, having said that, that hasn't happened for a few weeks now! Things aren't as extreme as they were 2 years ago or one year ago. It would be good though if they were to not be part of everyday existence although I'd rather have those than cancer.

Finally, it is probably wrong to ask to be back to normal and not have these niggles as, in the overall scheme of things, others suffer far more than me and I have recovered from BC. Many other people are suffering far worse things in the world and I really should be grateful that I am over the worst and that I am able to tell the tale also that I am allowed to whinge about it. It all seems somehow trivial now I think about it:-)

Did I say tired?

Mmmm

I actually sat down and watched a Laurel and Hardy DVD - one of my set I got for my birthday. Now they aren't everyone's cup of tea but I enjoy watching them in small doses. Of course the trouble is that it is quarter to one in the morning and I am wide awake :-)

I shall turn in and see if I can get some shut eye quickly. I feel wide awake unfortunately.

Now I am tired

I whacked a week's worth of lessons into one day and feel really tired. I needed to catch up after falling behind about a week ago. I got my assignment in on time and I am really hoping for decent marks in that. This module on Faraday was a big one this time and whilst I know a fair bit about it already (I trained as an electrician so should know a bit about him) it was still quite an eye opener to learn about the Institution and his lectures.

Tomorrow - Stalin. I know a lot about him from my recent reading of Martin Gilbert's History of the Twentieth Century. This section is about Myth, History and Reputation.

I've done enough today so I am going to go and watch the TV or listen to some music.

Top of the world

This morning - I haven't felt this well for a long time. The sun is out, I had a good evening. The household was all smiles, cheerfulness and light this morning and all seems set fair today.

I was meant to be at a tutorial in London but I have too much on my plate at the moment to manage that.

I just listed the stuff that I need to do and it is a bit terrifying as I only realistically have three weeks to sort it all out. I cannot see that happening as things stand - I really do have too much work on.

Today I intend to sit down and do some planning. I need to work out what is achievable in the time available.

Anyway - nice day and feeling good so who knows what I can achieve if I put my mind to it.

Beer and a Ruby

An impromptu evening with lovely friends and it is so nice to have a belly full of laughs, beer and food once in a while. A couple of pranks and some lewd and even occasionally intelligent humour across what was honest food and service can only but set the weekend up :-)

I do enjoy meeting up with my friends and I value their company more than they will know or more than I dare let on.

Relaxing and Chilling

It is a lovely day outside. I've been for a short walk this morning and I may go out for a few beers and a curry this afternoon/evening which will wrap up a quite strange week.

I must have been a bit stressed about the talk last night. I needn't have been at all - I get up and talk to people all the time and I am often left to do impromptu talks. The reason I say that is I feel really quite well today. I had a bit of the old leg cramp troubles again this morning (heavy bag last night?) but other than that I feel much better today than I have for some days.

Difficult to describe but my skin feels warm almost tingling which is how it felt after some of the earlier treatments. Things don't look so bad and I'm feeling quite upbeat.

It has also taken me a while to get back to understanding that I cannot control everything and that sh1t happens occasionally. Some deadlines are being missed and not because of me but other people are screwing up. I've stopped blaming myself for missing these deadlines knowing full well that it is way beyond my ability or sphere of influence to do anything. It just bugs me that no one works to the deadlines they agreed to.

So maybe I was getting a little too stressed out last week? Who knows but anyway TGIF!!!

Bakers Hall

Wow - it really is good to go to these Livery halls. I did my presentation which went down quite well. As usual - a lovely meal and nice wine and good company - I really couldn't ask for more. The Hall was slightly more modern than I expected but some of the old artifacts were hundreds of years old - the Farriers were a 1300s Livery. The Bakers Hall is a lot more modern but they still had their old charters on the wall and it really did look like a court too. These are fascinating places.

I need to trim down my bag when I go to one of these next - It feels like a bag of lead :-)

Anyway, I did my first public talk about the Charity and it went down really well. A friend said to me today that it would be OK as I would have done these a Zillion Times...

I have tomorrow off - Brilliant. Not so brilliant is that I need to catch up on my work and a hundred million things. Never enough time is there..

I get concerned

that people don't believe I am tired or lost for words or just can't get up in the morning.

Why the hell should I be worried I often wonder or give a toss what people think about me? I suppose old habits die hard. I never used to take time of or whinge like I do these days about how I don't feel quite right. It annoys the hell out of me because it stops me doing what people pay me to do!

I'm tired all the time, I put on a good show but boy do I pay for it later. If I overdo it or take a few long days I am wiped out. It is so unlike me. I give everything 100% or try to and feel I come up short (not sure I actually do) but it is the bloke with the "Gravity Switch" that gets me every time.

Tomorrow I will be flying. By the time I get home I will probably have done 15 hours. Friday is a day off because of that - I know full well what I'll be like with the adrenaline rush tomorrow evening on my solo presentation.

It is interesting that Steve is now getting the classic BCG symptoms on his treatment. It is just so bizarre - unless as an old girlfriend once accused me of having my brains where my ***** is :-)

Well its near enough your bladder anyway!

Busy day and still yawning

I decided that I would have to have Friday off as I am still feeling not all there and I need to get in touch with a load of people to sort out arrangements before I go into Hospital.

With my colleague off at work and all sorts of things going on it is just amazing how quickly time is pouring away.

I am out tomorrow to a meeting in London. More after the event. It will be at a Livery Hall and to a Livery Lodge which I am looking forward to immensely. It will be my first speaking engagement for the Charity outside of the Forum I did earlier but I will be flying solo tomorrow.

I am certainly feeling the pace at the moment. I finished my assignment for my Uni course and got that in tonight. I feel quite good about it. It could have been better but I really enjoyed doing it and I am sure that the next ones will only get harder. At least it is a major worry off my back and I don't need to do another until January which is cool.

At least another long weekend coming up to try and solve the tiredness problems - I really could sleep for a week.

A day back at work

Felt like poo to start with. Tired and yawning all day but managed to get through a load of work but somehow feel empty and not really great about things.

My poor colleague has been in the wars. We may see him for a day or two next week but thereafter he will probably be out until 2009. In 3 or 4 weeks so will I!

Why on earth have I taken on all of this stuff when I have been ill? Sorry it is rhetorical I think. I've done it to occupy the time and take my mind off things. I really fancy going to the Tarn area of France and spending 3 months soaking up the atmosphere, Fois Gras, Monbazillac and Cahors wines. Sitting by the pool and reading a series of books. That is what I really fancy right now - whether I can afford it is another matter!

Go on - one more screw won't hurt

Like hell it wont. Gee how much more can I absorb this week. Loads of things happening and I am trying like mad not to get too much as I am due in Hospital on the 9th December and I've less than a month to get all these things sorted out. I'm going to go pop like a balloon I reckon.

I'm ending up with so many things to do and I am the one who is meant to be ill and should be in recuperation mode :-)

DOH!

I have a special meeting on Thursday night that I hope will go down well and I've got to have Friday off so I can catch up. My assignment is due in Thursday and I should have started the next module by now and it is half way through the week.

Oh well - I always did like working to deadlines....

Time it is just accelerating away

I picked up far more work than I really needed tonight. I've got home with a list of things to do and there is hardly anytime left to fit it in.

Suddenly there is a wall of work and muggins is going to have to find time to do that and in four weeks realistically. After that who knows what I'll be like after my operation? I'm thinking that I'll need a good week off at least after that and whilst I might be able to work on some stuff I wont be up to much as I can't sit in the office chair for long periods.

I've still got some time to come off from work so I can use that and I have almost completed my assignment for this side of Christmas but will need to keep up with my studies and I am about 3 days behind which is a worry I need to get back on track.

There are many competing things going on for me and prioritising them and ensuring all the balls are in the air is going to be interesting. I think that things are slightly quieter at work or should be and I'll find out tomorrow as I need to plan the next 4 weeks out with them too.

It will all get done of course. It always does :-)

Heady and Tired

Well, it still feels as if there is a cold trying to get out of me but it is as if it is trapped in a small concentration at the back of nose and throat. It is quite a strange sensation. I feel the smallest headache and as if I am about to come down with a cold with this "feeling" high up in my nose and yet that is all there is.

I had a pretty poor night's sleep and didn't go to work. It worries me that it is easier not to go but I made myself do that. Some time ago, I probably blogged about it, I realised that it isn't worth fighting my way into work if I feel like a bag of poo when I get there. Also it isn't worth making myself worse or exposing myself to more risk trying to do it. Prior to this I'd have turned up with my arm cut off but these days it isn't worth doing that. Whilst my immune system may be firing on all cylinders I don't want to test it on anything other than doing its job.

Feeling rough

For the first time in a very long time I actually feel unwell. I may get tired and depressed and run down but I don't often feel ill. Tonight I do and that is surprising as the Immunotherapy seems to have kept everything away from me for a while.

It may just be a glitch and nothing to worry about. I'll see how I am in the morning.

We had a bit of a shock in the house on Saturday morning - perhaps it is that? Not going to say a lot about that but I really could have done without a weekend of upheaval when I am trying to get my assignment finished.

How your mind works

Tonight a good friend showed me some photos of his party 17 years ago.

I did and didn't recognise him. You see how he looks to me today is how he has always looked.

Not sure if that makes sense but that is how it is or was to me. You see, my father and my Uncles have always looked like their most recent pictures. You don't notice the passage of time even over quite long periods.

Tonight we were reminded that some of the people I knew when I was initiated into the Lodge 26 or so years ago are in fact very old men now. They are frail and in their late 70s and 80s but they have always looked liked they are tonight....

I do not recognise the passage of time with my friends that I meet a lot - we all grow older together.

My friends photographs of 17 years ago were so different and he looked SO young it was almost impossible to reconcile with how I remember him. To me he looks today like he looked then.

The mind does some interesting tricks in this respect n'est pas?

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.