Hardly worth the effort

I got up early and got under everyone's feet and got ignored so escaped to my room only to find the Internet wasn't working and then had to wait a few hours for that to come back on.

Not exactly the start of the day I had envisaged. Struggling now to get the enthusiasm to get up and start the mountain of work I have set myself to do. I just can't be arsed to do it! I am tired from last night and it is one of those really grey December days outside too. I know if I don't make a start on this lot soon - I'll just compress everything into a few days and I really don't want to do that. I need a plan. I think I'll just go and have a coffee :-)

Some-days I get like this - I am abjectly p*ssed off at the moment. I can't tell you why as I have only been like this the past few years but it is as if all my enthusiasm has been drained off and I just don't want to do anything and yet realise that I perhaps should. It is going to be one of those days :-)  Must be stuff that goes with the condition.  

I've been here before - before :-)

Drat - it is gone midnight - I went to bed at 10:30 as I was feeling tired - well obviously not as I am wide awake and sat here!!!

It is a bit deja vu - almost a cycle of things going OK then out of control and then OK again. I hope it is a one off though as I need to be with it these next few days to catch up on my work. Two of my all time non favourites Plato and Poetry :-( Yuk! At least they don't ask any questions on Plato - unfortunately the Poetry one they do have an assignment - not looking forward to that. How on earth did I think I would have done those if I had my biopsies last week?

So - back to wide awake and sleep patterns disturbed. I need to be up early - it is C's birthday tomorrow so we ought to give her some cards and presents before she heads off to work. Maybe I can break the cycle a bit by doing that.

No problems from my knee today thank goodness. It seems to be when I really step out on a walk I get it. Perhaps I just need to get back to exercising gently - and I want to do that once I get my results which obviously isn't going to be this year now. I haven't heard from the Hospital and tomorrow is the last operating day of the year I believe.

Roll on tomorrow - I need to get organised and planned and I am now clear of all these parties and meals so should have less distractions to deal with as a result.

Ward Size

Not certain if the same everywhere but my Hospital (which is fairly new) has mini wards of 4 beds either side of a central corridor with a central nurse station there are perhaps 4 lots of 4 and a couple of smaller single rooms. The ward join one to the other in a square formation around a central core so you get three wards at 90 degrees to each other.

In preparation you are now put into a ward adjacent to the Theatre suite. After that you will go to your allotted ward. There is a specialist Urology ward although with the biopsies you can end up anywhere. I have been in one of the single wards once.

TV - there is a pay TV system which they push you to buy cards - frankly, I take my MP3 player in and they can stick their TV as it is pretty extortionate - some further way of catching up with funding deficits no doubt and supplied by a third party. Mine gets turned to the wall on its bracket and after every time the technician comes around to move it I turn it back again. I believe the radio is free but only certain main stations. Rip Off.

Not sure of the nurses to patient ratio but there always seems to be enough and they work really hard. The only issue I had with the Hospital is how hot it is. The first time I was there we had to bring in our own fans to cool us down. They made the Theatre block air conditioned but not the wards! Another foot shooting moment by the looks of it as the bill for electric fans must have outweighed that for a central A/C unit!

Some Additional Data

Steve has done a great job over here explaining the three different approaches to Health Care for Bladder Cancer in Canada, the US and over here in the UK.

It raises an interesting question about the cost of healthcare in the UK. We can go Private if we have insurance or can afford it but generally the National Heath Service (NHS) is how most of us get treated. The NHS are funded centrally from the Government through our contributions. Everyone in work who earns over a certain threshold, pays into the National Insurance (NI) pot. Employers pay about 10% and I think we do too on a sliding scale.

After WW2 the scheme was set up and it should pay for all healthcare needs and provide a state basic minimum pension. The latter is in serious doubt now but the former is still funded by workers and their employers, each paying a contribution.

To go into the details would be another blog on its own but there are all sorts of budget problems and some local trusts have overspent their budgets and wards close. Hence when I stated that there were no beds last week, it is very probable that they were cost cutting and shot themselves in the foot as they may have saved a few thousand on having less beds but to turn us away and waste the time and cost of all the Theatre staff, lighting, heating, equipment and so on was just another false economy.

I firmly believe I owe my life and the continuing use of my Bladder and use of my Prostate to the speed and efficiency that surrounded my diagnosis and treatment. So the people who practice their medicine and the health care professionals and support staff are fine - it appears the management can't actually do the jobs that they are paid quite well to do. It is a shame really but the levels of care are good.

The Treatment of BC is different between the continents. I am following the latest European Guidelines of best practise and Steve and HK must be following the NA version of the same. Up until recently, on being clear I would have followed the cycle of BCG and Rigid Cystoscopy as of now and then have been on 8 to 12 years maintenance (I think I may even have said this a year or two back in here looking to how long I'd be treated for). Now, it appears that the results they are getting suggest that the 3 batches of 6 I have had are sufficient (I've actually had 24 in total).

Three down one to go

It was nice to be driven to the family lunch and returned home by my daughter. It meant we could have a few glasses of beer/wine and enjoy ourselves.

My colleague from work was there looking very well which was good to see. We had a nice day out and returned having won 4 raffle prizes and actually returned winning tickets on 2 further occasions - our luck was surely in today.

So everyone of us came away with a prize and I was very pleased to get a Silver Pendant of a Square, Compasses and Cornucopia with our Lodge name engraved on it. I was then told it is the only one in existence. The silversmith was there and so I thanked him and he very kindly then gave me a silver Stewards pin as well.

I've had a good day and only one more serious lunch to go tomorrow and I hope that is all the partying until around Christmas itself.

Nice to meet a lot of people asking about my health again. Always nice to know that they are thinking about you.

A quick journey home

This time the meeting ended in plenty of time to catch the train home and it was nice as one of the members lives around the corner from me. We shared the journey with another member of the Lodge on the way home and it made the journey go much faster.

It was great as he was able to share the journey right to the top of my lane. We had a great meeting, the local choir turned up and sang for us and we sang Carols. We had a great meal, plenty of everything and my first Christmas Meal (Turkey and all the bits) of this year.

What I enjoy about these meetings is the serendipity of it all. Fancy one of their members living about 15 minutes walk away from me yet his Lodge is way over in Gillingham - a good 1 to 1 1/2 hours by train away.

Mind you I am beginning to notice that my left leg is getting sore around the knee and shin area. It has been doing this for ages but tonight it was marked. I wonder if this is the joint problems you sometimes get with BCG? It is like a very slight stiffening in my knee and I suppose I did do a fair old walk yesterday and stepped out a bit as it was raining this evening. I hope it isn't something worse than that.

On a bleaker note a friend of mine, who we have been saying for ages to go and check herself out, has ended up in Hospital with diabetes. She has been having all the classic symptoms but put it down to her having given up smoking despite us all saying what we thought it was. She is struggling away in Hospital whilst they try and stabilise her. I just want to meet her homeopathy adviser who said all was OK!! Bloody quacks should be held to account for this sort of nonsense.

Well I enjoyed that

What a good night out. My ears are ringing a bit but that isn't surprising it is a smallish venue there were about 300 or so there. The first band were good and their guitarist was excellent. As I've come to expect from them, they are very good on Free and Bad Company covers and loud as you like.

The Letz Zep band were jaw droopingly good. Really accurate and there was something very familiar about the Lead Guitarist - very familiar indeed. It was the same chap who plays in the G2 (Genesis) tribute band I saw in November. They really did well and the audience were on side and so it was a good evening. I walked there which took about 45 minutes and luckily got a lift back from a friend of mine. My ears are ringing now :-)

So a real bonus to go and see these guys and a surprise to see the G2 guitarist here as well.

I need to get going soon so I can go off down to Gillingham which will be a bit of a journey. It rained this time last year too as I recall. It is slinging it down here at the moment, a real stair rods job too.

The Upside is

That I get to go out tonight and tomorrow to two events I didn't think I'd make.

Tonight to a Led Zeppelin tribute band who are supported by another band I've seen before who are a Free and Bad Company Tribute band. It should be good and I have just noted that I can walk there in about 40 minutes so I get exercise too - well I'll need that exercise to burn off the beers at the Rugby Club where they are playing!!!!

Tomorrow I will get to go to a Lodge meeting in Gillingham. Again, I can get the train there and back and so can have a drink. last year I won a bottle of scotch in the raffle. The bottle was a one Gallon bottle and no I haven't finished it off yet...

So a bit of a bonus until I realised that we are going out on Sunday for a Christmas family meal and on Monday I have another office meal that I am going to.

I wonder why I put weight on at this time of year? Rhetorical question - sorry :-)

On being cancelled

My boss's boss said to me that it was disgusting about the Hospital cancelling. He reckoned that I would be resilient but felt most strongly for those who were older or more in need of surgery as it just added to their worries and more so given the time of year and perhaps other thoughts running through their head.

I like him a lot as he is insightful and intuitive about the needs and wants of people. I suppose being the head of a Charity you need to be seeing this as well as all the aspects of running what would be classified as an SME if it were a business. With about 40 staff we are a reasonable size.

It got me thinking this morning that my disappointment is that I wont know where I am so there is some uncertainty. Lets face it, I've been clear for some time now and a reversal would be a lower percentage option than a clear. A reversal would be devastating but controllable. This particular Cancer (the version I have) is slow growing and so a delay of perhaps a month or two is no real issue in terms of the long term outcome of my situation. Last May it could have been as the results would determine a further course of BCG treatment.

So, what about those who had tumours or other things more serious. The anxiety for them knowing that there was something growing inside them that they know to be dangerous (but may not have researched this thoroughly) can only be causing them more worry.

All of this because some Spreadsheet Manager decided to save costs and improve efficiency. In a way you wish the aforesaid Spreadsheet Manager would have been in the next bed waiting for a life saving operation and then seen what the news meant to them. The rest of us are a tick in a box for the moment but I know our Consultant will be going through the roof. I wouldn't want to argue with her - ever. She is brilliant but I wouldn't like to cross her or receive the benefit of her wit...

The cost not to operate means that in effect the Hospital will now have to pay twice for our procedures whereas if they had the beds they would have paid a one off cost. The National Health Service gives great care and whilst it occasionally screws up, you hear far more good things than bad. The trouble is and you can apply this to most large institutions is that you have managers who cannot manage and a bureauacy that would make your head spin, the litigious society (thanks US) that we now have over here and the utter nonsense that goes on under equal rights policies (the underlying stuff not the intent) plus constantly changing Government 'targets' are wreaking havoc and distracting top management downwards. If they could actually put together a vision, get everyone bought into it and execute it we would have the best health service in the world but not whilst some pencil pushing, spotty jerk with an NVQ in spreadsheet pie charting is controlling patients and health care professionals.

I think that is this morning's rant out of the way :-)

Another Site and another view

This is an interesting site and a thing that I did know but thankfully it doesn't apply to me but, there but by the grace of God go I....

The Blog Site is here

What Urologists Faill to Tell Their Male Bladder Cancer Patients @ Yahoo! Video

Does my bum look big in this?

Theatre Gowns. Why?

Your arse ALWAYS hangs out the back of them no matter what you do. Invariably the cords to do the gown up with are broken or otherwise knotted. The cords are round the back making it impossible to do up anyway unless you do it up at the front and then try and get you arms in the holes! Those who can do them up are hideously deformed or are contortionists.

If you do manage to do them up there are always gaps where your arse hangs out.

It says all over the gown "For Hospital Use Only" For the life of me I have absolutely no idea what on this planet you could possibly do with one other than use it in Hospital, you wouldn't be seen dead in one and frankly and rightly the Style Police would arrest you and lock you away for life just for wearing one. Then there are the DVT Stockings - vitally necessary but again, no fashion statement there :-) The whole thing looks like some bizarre secret ritual and it is played out every day in Hospitals around the world. Not content with having to go through the psyching your self up for the process, the trauma of going into hospital etc, when you are there they ridicule you by making you dress up like a clown :-)

US - Canada - UK differences in TURBT / Cystoscopy

Steve sent me some details of the US and Canadian TURBT regime and I have reproduced these below. HK in Canada supplied the Canada details.

I've added Cystoscopy here as well because, in essence, that is what I have to have the biopsies taken but they use the same tool (I believe) in both because it cuts and cauterises the procedure is similar.

Here is the US:

In the US you go to the hospital as an "outpatient" and do not spend the night. After the surgery you get 1 hour of Chemo (no salt wash) and 3 hours of recovery, then you are sent home with a catheter. You take codeine (lortabs) for a couple of days, and on the morning of the third day, you remove the catheter yourself. By the fourth day you are back to mostly normal movement and should have bladder control with only minimal discomfort.

Here is the Canadian:

In Canada, you need to not eat after Midnight. Next day you need to go 3 hours before the Surgery, they put IV and Antibiotic through IV. Once the Surgery is done, 2 tubes are attached in Catheter ,one to clean your bladder with Sodium Chloride and the other to void through Catheter. Also IV is attached to. Doctor comes and checks in the morning (after 18 to 24 hours), and informs the nurse to remove IV and catheter.

Need to Void in the bottle to check how much urine comes out. Once it okay then you need to go home. If it is not enough then doctor decides either you have a Catheter go home or you stay in the Hospital. Sometimes doctor will come after couple of hours after surgery and he will give Chemo. ( doctors Decision). I hope this will help you .

Doctor will give you antibiotic once you are released from the Hospital.2 to 3 day is very painful. If you bleed a lot , need to go to Emergency that what doctor tells the patient. After 2 to 3 weeks result is given about the Tumour.

Here is the UK:

Typical no eating routine - if you go in for an afternoon operation then no food after 7:30, you can drink small quantities of water up to 11:00 and you go to the Hospital to arrive at 11:30. They take you to a pre-theatre area, get you kitted up into one of those gowns for operations, get your DVT Stockings to put on and you look a right Charlie! They do the usual tests and operations start at 2 pm. You can go any time from 2 to about 4 or 4:30.

You are wheeled to theatre - you would have signed consent forms and they go through a check list. You go to a prep room where they insert a cannula into the back of your hand and it depends whether or not you are awake or not whether they wire you up to the ECG and BP cuff etc. Sometimes it has been done before the cannula sometimes they must do it after they knock you out.

If a TURBT you wake up with a catheter inserted with a couple of large bags of washing out fluid and a bag for that to empty into. This is usually a frame based system to the side of the bed. Later you may get a leg bag to use. Often you will have a drip in the back of your hand and be on Oxygen for up to 30 minutes afterwards.

The Catheter stays in for about 36 hours. Certainly all the next day and the morning after that it is taken out before which they give you a jab of antibiotic. The nurse takes a sample from the catheter for analysis and then drains the bulb part holding the catheter in and she withdraws it - you give a few coughs to get it moving out past your prostate. The relief is short lived - see next para!

The first time you pass urine after this is perhaps the most painful thing and after that it gradually gets better. Passing blood for a short time then after two or three weeks the scabs will be ejected.

With a Cystoscopy for biopsies you go through the same routine as above except you do not have the catheter on waking and you maybe just have the drip. You need to pee in jugs to start with so they can monitor input and output (they do that in a TURBT as well). After the first pee which is every bit as painful as the first one noted above, they monitor you for a while. If they are happy you can - potentially - go home on the same day. Normally they monitor you overnight. In general terms with biopsies you don't pass much blood at all and after a few weeks the scabs come off and you pass them.

On both you wake up with a shaved leg - when I asked about that, it is where they ground the machine that cauterises the bladder as it cuts.

If you feel up to it - this short video shows the process of removing a tumour from the Bladder with the cauterising loop. Not for the feint hearted.



I'm not certain I like the idea of DIY catheter removal. I have not had any chemo with my treatments but I know they load you full of stuff at the time of the operation.

Pain relief is normally with Ibuprofen and Paracetamol tablets. They must give you something when you are under as well of course.

Generally results are 2 weeks - sometimes I have waited up to 4 weeks.

Celebrated like I was clear

One of the office parties. It was really good and I invited those who still stood to come over with me as I had negotiated time off to fulfill my commitments. I daren't even say what the bill at the wine bar came to but what a good evening. Thank goodness I woke up on the train at my home stop!!! I was well away :-)

I have agreed a short working month and to be able to review my e-mails and be in touch. Hopefully this will allow me to get all the planned stuff finished and to have a few days up in town with my work mates. If tonight is anything to go by, it should be most interesting!!!

Whoops

I bought some stuff for the staff from Harrods - chocolates, biscuits etc. It was because I wasn't going to be with them and a little thank you for everyone's hard work and friendship.

They arrived this morning which was a bit embarrassing - I had expected them to arrive sometime this week and as I wasn't going to be here....

It certainly was a surprise for them to see me but there you go. We are working out a plan that means I can work at home and come in on the odd day over the next two weeks or so.

I hadn't got a contingency plan for this at all! I should know better being a Project Manager for goodness sake! Mind you, life is a bit too short to plan for everything.

A little surprise for my work mates

I'll go in to work tomorrow which will be an interesting meeting with everyone. It is the day of the big United Grand Lodge meeting and so the place will be full of visitors. It is also the President's drinks party in the afternoon and so I may as well enjoy a drink with the staff - I wasn't going to be there of course and gave my apologies.

I will keep my ID bracelet on for a laugh. What a crazy thing, I have to now go and negotiate time off and sort out all of the things I was planning to do because I would have been sat at home at my office and spent the time doing it.

I will need to work out quite how I can fit everything in and spend the right amount of time on each. It's just one problem after another :-)

FUBB

So how come I am blogging when I am meant to be in Hospital recovering? No beds. All of us were sent home at 3 pm which was a real bummer. It has completely trashed my week and December for me. They have no idea when I will be asked to go back in, it could be anytime!!

I'm pretty upset as I wont know now for some time whether I'm clear or not, perhaps for some time to come, like January or February.

All the plans I had as well, to spend the down time doing useful stuff is now in deep trouble. I was fully expecting to spend next week doing this 75th History for my Lodge. That is obviously going to have to be reconsidered. On a better note - it does mean that going out on Saturday is going to be back on and perhaps the gig on Friday if there is a spare ticket. There are other things too, like my assignments and catching up on my Open University stuff - I can go to the tutorial on Thursday too now.

So - the Hospital is full of sick people :-) I did feel sorry for the chap opposite me who was to have his tumours cut out but he was reassured that they were low grade and he would be back very soon to have those sorted out.

After all the psyching up and worry and adrenaline expended, it was all for nothing. I walked home and had some soup and a sandwich and I am just settling back down and calming down - if I let it get to me I'd be very upset almost tearful it is just very annoying and just think of the costs of all those theatre staff and all the preparation work that was lost today. In trying to save money you can see how the NHS losses it when something like this happens.

What does Captain Jack Sparrow say at a time like this? "Oh Bugger!" :-) How very British!!

And off we go

Well not we, me. I used to have to go in accompanied but no longer. I don't mind taking myself in and I am OK as I just go into my shell and sit quietly listening to my music. Some people just chat and rattle on and I cannot stand the TV pumping out daytime TV (whoever thought up that needs shooting). So I sit just outside and am quite happy to sit on my own until I am called.

Right - must be off then, adieu.

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.