Energy and Commitment

I wonder whether the operation was some sort of milestone in my planning that somehow has sparked off a "new me".  I'm somehow a different me again.  I'm upbeat, looking forward and I'm feeling optimistic about the future.  I am looking forward to taking a risk and seeing if I can get this idea of ours under way and funded.  

I hear it in my friend's voices, their concern over the recurrence and yet, I don't feel that it is quite as bad as it sounds.  I suppose it isn't if it is your voice and your head thinking around the ideas.  Bless them, they sound worried and yet, I don't believe it is something that you can worry about.  I'm under observation and in the hands of a specialist who will advise what is right for me when we next meet.  I think the only things I need to know are what treatments are there going to be so I can plan my way around them.  One of the key things I must do is to get some time together with my business partner and plan the way ahead in more detail.  Any treatment would just mean I have to set my plans a little differently especially if I am on some full blown treatment again.

I really feel well and I just want to get on and get things sorted.  I think I've come to terms with leaving my job albeit I am going to be retained for a while and I am certain that by only doing strategic work it will be better for me in terms of using my mind and solving problems.

It still amazes me how integrated I became to the organisation in just 2 years.  At least I can still help even from afar and I even did about 3 hours work today remotely on the web site upgrades - well it kept me busy :-)

Flocky Coffee

Nice of Flocky to come over and buy me a nice cup of Costa Coffee and a sandwich.  Good to get out and about a bit.

I'm feeling well enough to perhaps go out to a meeting tomorrow evening that originally I thought I would miss.

Happy days - I'm not as bad as I have been - or perhaps that is just a false dawn and I'll regret it later this week?

New Day New Attitude

I'm analysing this on the blog to see if I can rationalise it.

I keep wondering what just happened to me?  I surprise myself sometimes by being so positive when I thought I'd probably be quite down and not so able to cope with a recurrence.   The reality is that I'm not in the slightest bit upset about it - perhaps I'm in some sort of denial (no that's not a river in Egypt!).  

Could that be it?  All bravado and a show of courage, the last act of defiance?  No I don't think it is that entirely either.  I suggested to a friend of mine that I must have gone through the outcomes in my mind before hand and worked out what it would mean.  I hadn't expected a tiny tumour at all - if anything it was going to be one of three outcomes:

1. Clear - we move to the next level of flexible cystoscopies
2. Presence of Cancer in many places - We go for BCG a complete round - 18 with 3 rigid Cystoscopies
3. There are tumours in here  - that are cut out (A TURBT) I wake up wired up and we go the round again or have the next conversation about losing the bladder.

Well it is a bit between 1 & 2 which is the strange thing.  Let's say 99% cancer free and one rogue tumour that we don't know the grade of.  That's still 99% of the bladder that is fine in my view of the world.

So perhaps that is it.  I suppose the only down side is that I will be in and out of Hospital a lot more and be back on these 6 monthly full procedures so I'd just better get used to it.

So where are we now

Some 24 hours later I find myself quite optimistic really.  It surprises me that I should be quite so upbeat but then I didn't get any bad vibes at all from my consultant and I got to go home earlier than ever before, I wasn't even required to do the usual 3 pees in a jug to go at all and remembering all my experiences before this was easily the least traumatic and least painful of them.  I know I've been pulled around as I can feel it, urinating is easier now and the fire and razor blades bit is all but gone.

So why so cheerful?  well - what's the worst that can happen?  A small growth that has happened since last August has been spotted and removed.  It was routine and along with the remaining random biopsies that were taken in an otherwise normal bladder will be examined and then I'll be given the details at the next consultation.   If I have to have treatment then I'll have to have treatment.  They may well have treated it on the spot anyway.  If it is a tiny isolated one then there may be a need for further scopes or some other sort of treatment.  Whatever it is, they caught this so early on that some sort of plan can be formulated.  It all depends on the grading of this tumour too.  My early ones were aggressive to say the least and were large.  This sounds so small that I didn't even need a catheter which is pretty good.

I remain positive and upbeat about the whole thing surprisingly enough and that has phased a few people but I know enough about this to know it is a set back but not a big one.  If the cancer was in a tiny area of the bladder and is nowhere else then things aren't so bad - it is if it is aggressive and recurrent I'll have to work on.

This also gives me further incentive to make even more radical changes to my life style.  I haven't eliminated things from my diet that could be carcinogens - sweeteners and pork and shellfish products.  Not that i eat lots of them.  However, I will be taking a long hard look now at what steps I am going to take to further assist my recovery and to make me healthier and more able to tackle anything that comes my way.

Somehow, in the back of my mind, I had half expected there to be a slight fall back or set back and hard as it may appear to take, it reinforces the very first conversation Ii had with my consultant - well she did most of the talking actually - saying that it was a rest of life thing, I'd always be being checked and tested and there is a high risk of recurrence and hence it was one of the most treatable of all cancers but also one that needs the most follow up and management.  Not wrong there.  Considering this was the 8th Operation I've had (although been gowned up for 9).  I've had a Flexible Cystoscopy,  An Intravenous X-Ray examination and I've had 18 or so BCGs (it could be more than that it may be as many as 24.  That is all in 45 months (3 3/4 years).  It just shows what you can get used to.

I brushed off some of my old music and took that into the Hospital with me - I'd forgotten how much I love this track by Kansas - Dust in the Wind - they don't make songs like this much these days.

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.