Feeling Very Well

I'm surprised to say that I feel the best I have ever felt - is that because I got to sleep in my own bed? I don't feel bad about the small tumour at all. I was awake between 2 and 4 but played music for a while, thought too much and then went back to sleep.

Up now, showered and ache a bit. I'm not as sad, depressed or upset about the discovery as I thought I would be. It is small, it is an isolated incident and it isn't there any-more so still cancer free. If I have to have BCG then so be it, I know what to expect.

What I think I will have to resign myself to is more of these rigid Cystoscopy sessions. Ho Hum needs must.

I need to go and take a few paracetamol and Ibuprofen to see if I can ease the discomfort (let's call it) of peeing at the moment.

8 hours and 10 minutes later with a BUT

I'm home.  I'll tell more why in Scar War VIII but procedure was good and no catheter and no hanging around straight home - I could have been home in 6 hours!!! 

And the BUT????

A tumour - a recurrence - small, tiny, minute, itchy titchy but a tumour nonetheless and it was cut out but it must have been tiny as Ii could have been home in 6 hours and they didn't need all the usual.

Remember I said I'd query why I was being kept in overnight - well it was a totally opposite experience today.  The pain around my middle has just kicked in so off to bed.

I'm not as concerned as I felt I was going to be but a course of BCG does not thrill me at all I have to say.

10 Minutes

Packed and ready apart from what book to take.  I am reading a mega heavy history book on the Spanish Civil War but will I be able to concentrate on it?  Probably not if I think about it.

Anyway, all is ready - I have MP3 plugged in, spare batteries and I'm ready to head off and wander up to the Admissions Lounge.

Catch up with you later.

4 Hours

Had a light breakfast of poached eggs on toast washed down with my last coffee for a while.  Now on water and plugged into my MP3 player and playing solitaire on my PC which I'll do until everyone gets up when I will pack my holdall and get my paperwork together for later.   Once that is done I'll come back and sit here playing games and listening to music until it is time to go.

my mum said she'd call this morning - not sure why - I only spoke to her yesterday.

I'm quite OK in myself at the moment - pretty neutral - a little apprehensive but then it doesn't make much sense to worry as what will be will be (thanks Doris).   Things have moved on as I was pretty much terrified and traumatised the first time I went in.  I'd had 3 weeks of bleeding and was still reeling from the diagnosis and trying to work out what it all meant.

Now - well it is routine in a way.  I know what to expect, although they still have their own ways of p1ssing me off and annoying me the routine of getting there, into operating gown and so on is much as it has been and of course I've even had one cancelled on me too.

As Scar Wars VIII approaches I think that I am as prepared as I'll ever be.  I'm quietly confident about the results but not overly so.  I'm no longer going in expecting the worst, I'm hoping for good news but if it isn't well that will again be as it is going to be.

I'm also reflecting a lot on my life to date and considering the changes in fortune and also - strangely - why I do not appear to settle down in a job any more.  I suppose I wouldn't have the unique experience that I do if I had been in one or two jobs my whole life.  At the charity I've done what I always do which is pick up a change project and build a solid foundation for the next person to build on.  They can have the 9 to 5 job and the  day-to-day running and administration.

I find myself back where I was sometime ago (over 30 years in fact) of hating commuting, sitting on the same seat of the same train every day seeing the same people, doing everything in a routine way.   The routine of work is also something that is difficult to cope with the amount of time it takes to get things done is criminal but that is just the way it is.  Things don't move fast unless they have to.

Oh well - back to solitaire, music and water.

5 Hours to go

I am up and showered and first coffee in hand.  I have just moved the car to let A and her friend go on holiday.  They are camping down in Cornwall and have set off before 6 this morning to get around London's famous ring road the M25 and off away to the West Country.  Probably be As longest ever drive but we have insured her friend should needs be.  Let's hope it stays pleasant for them.

I'm sat at my PC, reviewing overnight progress as I ran a series of maintenance tests on it.  It appears to be a little better this morning.  

My friend is back from China and I spoke to him yesterday - he is recharged - which is great and I hope we will meet up later this week to set out a strategy for the next 6 months work.  It is now my turn to hang around and wait whilst I am having this procedure and recovering and to get my replacement at work.  Once she/he is in place it will be much easier for me to sort out my net 6 months timetable and to get myself going.  At the moment it is very much like the phoney war.  We are both ready to get going but are just holding back and waiting.  We are coiled springs and I just want to give this a go.  But first things first.

I actually need to have some sort of physical break before I get going on my new venture.  That would make logical sense to forget one thing and get ready for the next.  I'm playing with the idea of a week away to do that.  The trouble is my diary is a mess until t2ndhe  part of June.  Maybe I can move things around.

So back to today.  I am having a coffee and one of my heart pills before going down to work out what "light breakfast" I will have.  Maybe scrambled egg or poached eggs will be good.  I can then start drinking water after 7:30 and it is only 6:15 now.

No doubt I will post another blog before I go into Hospital.   I will leave here about 11 which will get me there before the 11:30 deadline and then it will be a case of hanging around and waiting for them to come and get me.  

Watching the Golf

Worked quite well.  The Masters always looks the most wonderful place to visit at this time of year.  Not quite the outcome we wanted with Lee coming 2nd but Phil played brilliant Golf to win - good for him.

I have kept hydrated - more than I normally do.  I know that after 11:30 tomorrow I won't get a drink for a good 3 or 4 hours and so making sure I have plenty now will, I hope, help out.  These days you can continue drinking clear liquids (ie water) right up to the time of going in.  I shall do that as I found last time it did help a lot.

I read the paperwork - it still reckons you can be out on the same day - but that is without the biopsies just the rigid cystocopy.  With 6 biopsies my poor old bladder resembles a blocked sieve so I am not expecting to be out on Monday evening.  In fact I think I will challenge them this time as they always say you can but never deliver.  I suppose it is a bit like they have to tell you all the risks but they are unlikely to happen they can also tell you that your car does 0 to 60 in 5 seconds but there isn't enough road in suburbia to actually try it out?

I'm sitting in my office at the moment.  I plan to get up at my normal time of 5:20 just 5 hours away and have a shower.  I can then see of my daughter who is going camping for the week at about 6 am.  I can have a light breakfast and set myself up for the morning and then lock myself in my room for a couple of hours just playing music and PC games up to the point of going to the Hospital.  I intend to walk there on my own and go in on my own only in as much as poor old Mrs. F. doesnt get a word out of me apart from some mumbling and I switch my MP3 player on and try and breathe properly and relax - which for me - as we all know - is pretty difficult because that is just the way I'm built.

This way Mrs. F.  and L can go out and about and they can phone up later on and see how I have got on.  They can then come and see me at visiting time and that will be good.  At least that way we all feel OK about what is going to happen.  From my side of things I think I'd prefer it.  Mrs. F. used to come to most things with me but it is much better that I go to these myself as I am very much inside my own bubble when I go there and really don't want or need company.

My PC is playing up and I spent a lot of time messing around with it earlier today.  I think I'll set a few diagnostics going and get off to bed now.

Distraction Routine

I'm doing anything to keep myself doing things today - sorting out the computers, finding a book to take in tomorrow (that I haven't already read but will be easy enough to read), making sure I have cleaned my office, filed some papers and generally just pottering about at home.

Tomorrow will be worse as there wont be much to do apart from waiting around and going through endless check lists at the Hospital and being interrupted every few minutes by nurses, anaesthetists, junior doctors, consultants etc.  Just when you get to settle down and relax someone pulls the curtain open and jolts you into attention.  I just want it over now.  I recollect being really on edge the first time as we didn't know how far the cancer was in my bladder and it was all just a terrifying ride towards getting into Hospital, a horrible wait and then getting prepared for the operation and waking up in a mess.

It isn't that bad, I will sleep at least tonight and will be up early but I don't want my mind playing about too much today though so being busy is good.

Not long to go now

I have my music sorted, spare batteries and spare MP3 player - I might even take a book this time to wile away the hours.  In fact anything to distract me from the utter boredom of sitting down doing nothing whilst they fanny around playing bed poker so that they can squeeze the government's figures...

I know - a somewhat jaundiced and cynical view but they did play silly buggers on a number of occasions so that they protected the beds.  

Ii just want this to be over so I can choose my successor and get them sorted out, sort out my contract and get going on my new venture.  It feels a bit phoney at the moment.  my business partner is currently in China and arrives back late tomorrow and so I probably wont see him until later in the week.  Which reminds me I have my far flung cousins fropping by on Friday to see me - if I am up to it.

Anyway - the upshot is that this is a major milestone in my plans and so I am hoping to get it out of the way ASAP and also to be able to see a big step in my condition.  Ideally a move away from these 6 monthly full rigid cystoscopies towards the flexible ones - they aren't pleasant but at least they are bearable and over in a a matter of minutes rather than having to go through all the rigmarole of pre-assessment and then a general anaesthetic and operation and all the other stuff too.

Someone I know back on BCG

A person I know who had Bladder Cancer had disappointing results and is back on a full term of BCG - that is 12 - two courses of 6 at a time which I can tell you is pretty tough going.  The first one always seems to be easy but blow me the ones after that just seem to beat you up more and more.  Having said that - not always - sometimes you can get a mild reaction too.

I don't envy him his treatment - he is a pragmatic guy and will get on with it.  I wont see him for a little while - I just wished him all the best as he did for my procedure on Monday.

Because who knows what will happen

I thought it was a telling moment when I suggested that Monday's result could be a lot worse than the positive outcome I hope it will be.  This far in you don't balance it out like you used to.  I used to expect bad news and be delighted with the good.  Now I would very much hope that I am stable and there has been no deterioration in my condition, certainly no cancerous or precancerous cells in the results.  But what if there were?  What then?

None of us can predict the future - so I wonder whether you have to live every moment on the edge or play the middle road or just be careful all the time.  There isn't a right answer but if you knew you were going to die at a certain day and date - would you spend all your money and make it run out the day before :-)   Should you always be cautious and eat the right things or should you cast that aside and fill yourself up with your favourite things?  Excess in moderation perhaps?

I'm sure that debate could roll on for years but it was important that I get the point over to certain people that the results are by no means set in stone or a done deal.  things could go horribly wrong.  Now where's my beer and caviar?

The Countdown starts now

I decided not to go into work tomorrow - I just don't feel like it at all.  I feel a little down after the experience at the GPs.  I have to readjust my mindset to let things take their course next week - I cannot influence it - just sit there and lump it and get on with it - it will happen in their time and not mine.

That's the trouble of being a control freak - things are completely out of your control or influence.  

Ho hum....

 

The Crazy World of the GP Surgery

They are utterly barmy these people.  They make appointments and then fail to meet them, boil you alive in the hottest waiting room in the known Universe.  After 40 minutes wait - why can't you tell me when i check in you are running late???  How difficult would that be?  I could have gone across the road to the pub!

So then the PCs are running a new system so you can't see my notes about my white coat syndrome.  Then the BP machine doesn't work three times, then you try the other arm then it almost goes off the scale.  "ooohh that's high!"  Yea right no shit Sherlock!!!  The second go it comes down a lot.  But can you see my notes about the blood test - have you had it done - well yes on Tuesday actually.  Oh my notes don't say I am going into Hospital on Monday then?

Joined up communication.  It beggars belief.  Anyway, I finally got them to write down yet again that I have white coat syndrome.  They want to see me again.  Not sure if I'll bother - I might as well do my own readings and post them through once a month so they have them rather than do this one point in time stress inducing bollocks they put me through.  

Me, unhappy?  Whatever gave you that idea?

Work - Busy old day today

I have lots to get done but to add to things it is Jazz night tonight and I haven't been since January.  My friend from Denmark turned up with his friend and we HAD to go to lunch with consists mainly of beer.  Wow I got a huge bear hug off of him.  He nearly died last year and I guess we were really glad to see each other in such rude health.    Then another colleague turned up and blow me someone wanted to buy me a beer at 4 so I left the office grabbed a beer, said helloe to them, shot back a beer, got the train and promptly fell asleep until the station and wandered home ready to woof down some dinner and then go out for more beer drinking.  It is looking like my 3 or 4 units of beer a week admission to the Hospital is way out :-)

I have to be back tomorrow afternoon to get my Blood Pressure done by the doctor..  That will be fun!  Not...  

Well that WAS a surprise

This will be Scar Wars VIII as I did VII last August.  Good grief - here is the LINK.  I just hope I can think of something half as amusing for this one.  I will be all Scar Warred out if they keep taking me into Hospital...

My goodness - 8 operations (2 of them big ones) and all in less than 4 years plus the IVP procedure and flexible.  That's about 10 of these plus all the BCGs I've had too and all the visits, pre assessments, blood tests and all that stuff.  

At least I am still here so I ought to keep it in perspective and I suppose that it is still a lot better than it looked back in 2006 - a hell of a lot better.

I must go back and re-read some of my earlier posts if only to see what I was prattling on about 6 months or a year ago.  It is strange how things have moved on since then.

Where does the time go to

I find that the most interesting thing about going into Hospital is that I get to think back on the initial diagnosis and the treatment.  The horror of it all comes back and it just isn't like that any more.   It really is amazing to think that it was June/July 2006 - almost 4 years ago now.  It seems like I could account for maybe 3 years but 4 just seems way out.

I will be able to do a retrospective if things are affright this time.  I must also get myself along to the quacks and get my blood pressure taken so they can continue to write me out prescriptions for my BP medicines.

It is funny going to the Hospital and chatting away with the nurses who know that you know the ropes and we just get on and do it.  She is aware of my high blood pressure and high heart rate and all that and it is more a passing the time of day conversation these days.

It was a lovely day and the walk to and from the hospital was really pleasant.  

I'm off to work tomorrow and then need to sort myself out for the next few weeks working from home I suppose.  All good fun - not.  Let's just hope that my consultant does my biopsies and they I don't end up with a Catheter in again like last time and the time before.  How on earth you could abide them for longer than 24 or 48 hours I don't know.  I'd be a sh1t patient if I had to have one for any longer...

All OK

Clear to go in next Monday - the usual high blood pressure and high heart rate but other than that, I seem to be fit enough to go in for another rigid cystoscopy.   For the last three times it was thought to be the last one and in a way, I managed to get myself through the procedure telling myself that.  

I hate having to go in for these things.  No matter what you think about it - it is traumatic and upsetting painful but you can live with that, damn uncomfortable - I can't even begin to describe the feeling inside as everything settles back into place again - yuk!  Yes, I can now begin to start psyching myself up for going in and also trying to keep down the dark thoughts at the same time.

So here we go for another ride through to what must be Scar Wars VII?  I need to go and check.  I couldn't even remember when I had cancer this morning when chatting to the doctor :-)  I said 2007 but in reality is was 2006 wasn't it.  I wasn't thinking clearly at all.

It never fails to amaze me

How the nerves kick in before going into Hospital.  I though I was fine with this by now but just noticed heart racing, slight shortage of breath and that adrenaline rush and slight dryness at the back of my throat.

I suppose the thing is you never really get over this - of course this time next week - it will all be over but even so, the kiddology has to run out somewhere and an hour before I get checked over, here it is.

I'll walk up there in about 20 minutes or so and my appointment is at 10.  That is pretty good as I should be the 2nd or 3rd one in.  I should be home by 11 or so with any luck.

All I need to do now is get my mind back to remembering this is all for my benefit and all for my well-being.  

Family Around

Yesterday for A's birthday - I then found out the Mrs. F. L and A area all running in the Race for Life fund raiser for Cancer Research.  Gulp!

It was a lovely day - we did a roast lunch and had plenty of beers, wine and the like flowing.  

I have my pre-assessment tomorrow and my cough is still around.  It isn't bad but it is still there.  I hope that it will not mean a postponement of my procedure.  I really want this all out of the way before I get cracking on my new venture.

It is almost the end of my tenure as Secretary of one of the largest Lodges in Kent.  With close to 195 members it has some unique challenges.  June will be my last meeting and after 6 years I am ready to give up and take a back seat for a while.   It will also free me up from much of the additional work I have to do at home.  I've kept that going throughout all my time with Bladder cancer which has taken 4 years out of the 6.  I'm quite pleased that I kept doing it rather than dropping it.  

Easter Eggs and English Weather

We always discuss the weather as we have so much of it.  It was raining overnight and this morning and the ground was just too wet to put the eggs out.  So for the 3rd year we held it inside and that was OK as there were more kids this year, A and L face painted the kids which was nice.   The bigger crowds meant we raised a few hundred pounds for the old people's home and blow me if, as we cleared away, the sun came out and by mid afternoon it was a warm spring day....  Damn!

I'm a bit worried that my cough will not clear up by Tuesday when I go for my pre-assessment.  I hope that I can beat it by then.  We have family over tomorrow to celebrate A's 20th birthday which was actually today.  I imagine that we will have a great time and I can get stuck in cooking in the kitchen - lamb and gammon I think are on the menu.  I have some nice beers cooling in the new American Style Fridge in the utility room plus a few rather pleasant wines awaiting my guests.  

I should have wandered up the road earlier to the deli and got some cheese for afterwards but totally forgot about it.

Easter Eggs

Tomorrow we go and set up the Easter Egg Hunt and it looks like for the 3rd year in 15 (and in a row) we will have to hold it indoors as the weather is inclement.  It is such a shame as the gardens are extensive and it would be good to be able to hide the thousands of chocolate eggs.

My cough is still with me but whilst it sounds bad it isn't doing any damage to my chest or frame like it was earlier in the week.

I am hoping that I can get plenty of things done this week coming as the week after I am in Hospital.  I wont be feeling like doing much as I mooch around on the days before the operation.   I had better show my face at the office as the train strike is now off.  I have to do my pre-assessment on Tuesday so I hope my cough has gone by then or they will look dimly on taking me in and I don't want that.

I hear a lot from people who have got over cancer only to get another one.  That is all a bit worrying.  I suppose, in fairness, many are a lot older than me and perhaps that is just something to look forward to in my old age....  Gee I hope not - 1 lot is enough for a lifetime - I am not sure quite how I'd cope with another lot.  No use worrying about it I suppose.  I'm still amazed that they use this 5 year figure all the time.  There are reports on TV and News all the time and they are always quoted in survival rates.  For example I heard today that 8 out of 10 (80%) of women who get Breast Cancer are alive 5 years after diagnosis.  A 4 in 5 chance that you will survive.  Bladder Cancer is a little bit better but 80% is pretty good odds if you think about it.  It never quite works though - if they gave some 10 year figures that might be useful too?  It almost sounds that if you make it past 5 years you did well?  What happens then?

Anyway - Friday night and a big day tomorrow so better get to bed and get some proper sleep.