Off to the GPs

This will be fun - NOT. I have now been to this GPs surgery loads of times in 9 months. Yet for 18 years I had only been there to register and to have a medical for an insurance policy.

I really don't want to be turning into a full or part time patient. Like the Hospital, whenever I go there. The whole place is full of sick people!

Personal Gain

I've been wrestling with this for a while. suddenly, none of this matters to me anymore. I've been "climbing the greasy pole" for a number of years and some time ago, working for a major corporate, I decided to get out of it and go and run my own business. I no longer needed to play the internal politics nor do anything else just to further my career although I did enjoy it, it held no massive hold over me, I enjoyed and got paid well (or I thought so then) what I was good at and, as I was good at my job, it didn't matter if I was a bit "Maverick" or just a little difficult for the bosses to handle. That was, after all, part of my charm and made me different to my peers. See, even in this there was my climb the pole differentiators.

Since then I have run my own business and have had to impress myself rather than my bosses. Last year I took permanent work and that again meant playing that sort of corporate game but, frankly, there wasn't that much heavy stuff going down so it wasn't necessary. Playing politics in a 128,000 people business as opposed to about 50 people business really wasn't going to be that challenging when the CEO employed you.

Recently in my social life, I've noticed that politics have entered that too and I'm not too happy about it but I do find it almost blindingly obvious who is doing what, who is maneuvering who etc. It may be my take on things but you never shake this sort of stuff off/ In social clubs, people do things (always the same people) and they get bad mouthed by the people who don't do anything and if you do something you are sucking up to the chairman and all of this. Then there are the little squabbles and someone leaves as they've had enough.

I have to say that after my recent experiences, it really doesn't matter a fig about all of this. My Mum still says the words that her mum used to say

"You're a long time dead" and it really is true. Surely you can get on and sort these things out? It took a serious illness for me to see that half the things I wasted my time on before were hardly worth worrying about. If I worried about whether or not I was going to get this or that promotion or what was going to happen to me in ten years time? Well it isn't worth it is it - you could be dead tomorrow and that, is the change I need to start bringing about in myself. As I have said before, the issue then happens to be that if you want those around you to think and act like that too and they don't get it. It isn't life or death to them and they haven't had the benefit of the concentration of mind you have had through your life changing illness. Also this take s you back to the fact that only you have these thoughts and this urge to make the remaining time worthwhile! Gee life can be complicated sometimes :-)

I know just how you are feeling

Sorry NO you do not know just how I am feeling as I think that only I could ever know that. I've not had much of this but I have heard it said and it is used as a part of every day conversation but it isn't right.

What I say and what I feel are two totally different things. What I tell you and what I really feel are also quite different. If I told you that when my friend arrived tonight and that I was just moments from slinging my arms around him and having a bit of a blub - what do you think I was feeling then? Relief? Grateful thanks that he has always been such a support? Relieved I wasn't going to die? You don't know - how could you - even I was a bit taken aback at the emotions I felt. As it happened we just greeted each other quite normally but I was probably far more "extrovert" than I have been for months.

It just made me realise that people can "Imagine how you are feeling" perhaps they can "Understand how you are feeling" but I very much doubt that they "Know how you are feeling" lets face it you would have to have had the same operations, tests and results, be in the same situation family wise, job wise and be similar in every way to me to really understand that.

Pedant? Certainly, I find some phrases used in everyday conversation irritating to say the least. I do try very hard not to use the phrase of the day, typical phrases in dealing with major illness (well I wouldn't would I) and things like "Personally Speaking" or "My own opinion" or that sort of stuff.

Nuff said for tonight I think.

Still a little stinger

Mmmm, this isn't so nice. It is quite uncomfortable going to the toilet at the moment (passing urine). I'm guessing that it is just the bruising coming out and the blood earlier on today probably didn't help matters much either.

I've tried to be a little less active and not to do stupid things like lift heavy weights and all that. Unfortunately, I forget occasionally.

I'm now realising that I am slightly anxious about tomorrows meeting with the GP as my BP is a little higher than I expected it to be. I can't imagine that we are talking massive changes straight away as the outcome of last week's procedure hasn't truly been explained in detail.

I think I will also be making the point about being a professional patient as well.

I need to get out there and recover my life - I've spent 9 months or more fighting and I think I deserve a few days off for good behaviour :-)

Little Stinger

I've spent the afternoon lying down in a darkened room and had a few hours snooze. Seems to have stopped the bleeding now. The trouble as you can imagine is that the bladder is a muscle and so it is possible that this was a scab coming off one of the biopsy points or where they hooked out the suspicious bit.

Anyway, I'm keeping an eye on things and making sure that I don't do anything stupid like lift anything heavy and other such pursuits. It really is so easily done.

Little Stinger? Yes, if you have blood in your urine it gives you just a little sting to let you know. Just like cystitis (if you have ever had that?). It is enough to make you take in a short little breath and sort of half double up but it isn't that bad.

I'm out tonight and then off to the Doctor in the morning - I'm going to find out about this blood pressure thing a bit more then. I've been checking my BP these past 4 days or so with my new machine and it appears to be reasonable levels to me. I suppose it will be whether or not to continue the beta blockers or not.

I've not touched my exercise bike for a week and a bit as I had injured my back and then had the hospital and as you can imagine, exercise may just start off the bleeding again. What I think would have been apparent if I had continued would have been more weight loss (I've only lost kilo) and I think I'd have also continued to improve my BP results too through more cardio exercise.

More on that after we meet tomorrow.

Retired Hurt

I had forgotten just how knackered this recuperation period makes you.

I can only see a whopping great bruise on my right hand (you have to believe it) and that oblong of missing hair on my leg which as the hair is growing back is itching like hell. And of course there is the rather delicate matter of the um well, delicate matter so to speak which is still a little sore to say the least. You don't see anything else that makes you stop and think. There are no scars, stitches, plaster casts, splints (although that would be interesting) and the like to remind you that you've just been sliced about a bit.

I hope that I haven't gone back to the GPs too early by having an appointment in the morning. But my beta blockers run out tomorrow and if I am to stand any chance in the next Olympics - I need to be taking those!

I am feeling quite light headed and a little weak this afternoon and so I will be packing away the office stuff and going and sitting in the front room. I've got some cerebral work to do and I'll do that and relax.

Let this be a lesson to you - or me more likely!

Bugger - bleeding again

Serves me right for trying to run before I can walk again won't it? Just went to the loo and thought - Mmm that looks like blood and it was.

You get a little warning like this occasionally and it just says to you "SLOW DOWN DUMMY!"

So in that case I shall - slow down that is.

If you have this yourself - just remember that when they said rest up for a week or don't drive for a week - they probably meant it. Me? I've driven the car around yesterday (long distance) and today on two or three short runs. Now I am paying for it. Doh!

Previous post looked a bit worse than it was

I was trying, unsuccessfully to say that life goes on and that in the overall scheme of things its a small thing no matter how big it is to me.

Maybe it is only me then

That is elated about the current situation. It was as if everyone else was just floating around me this weekend. I felt that some people were really pleased (as was I) and yet nothing changed. It was as if it had never happened.

It only happened to me of course. Maybe it only ever mattered to me?

I asked my wife whether the children knew. She said - "yes they did". Nothing was said, nothing was different, nothing had changed. Just me - I changed this weekend, I moved on and I now realise that no one else will change with me as no one else has the disease, lives with it, fights it and moves on from it other than me.

Cheshire Cat Job

I have been smiling like a Cheshire Cat for sure all day and it was a fantastic day - i had a great time - I'm never sure if everyone else does though. I managed to drive all the way there which was good and was able to do the raffle and to spend time sorting things out.

Home gone 6:30 so much longer day than we are used to. But again, I'm not sure if everyone else wanted to be home so late.

But do I care?

Lovely Day

I'm not greatly impressed that I'll have to be wearing a suit today though - it is really shorts and tee shirt weather. We are off for a meal in the heart of Kent today.

The roads are bound to be packed as people make their way out for the day. At least it will give the A/C some exercise.

Sinking in

Slowly and surely I am beginning to take in the news and I'm still not sure. I actually feel quite drained this evening. I've spent a few hours just sitting outside in the garden in the dark and thinking things through and sitting quietly.

I finally came to the conclusion that I need to get on with some of the stuff I've been thinking about and some of the plans I've been cooking up whilst I have been undergoing treatment. I'm not certain that everything will come off though.

As I've been away from everyone, I've allowed myself a few tears tonight - not too many - just enough to relieve the system . Tomorrow I have to meet lots of people and I'm not absolutely sure how I am going to handle things. Some know others don't. It is all becoming more powerful emotionally than I thought it would and it is building slowly. I still don't see the leaping down the road Hollywood finale materialising but perhaps a quieter personal and private version -maybe?

Too much thinking going on for a Saturday night - obviously.

[Goodness - for the first time on the whole blog I've spelt "beginning" properly - I don't know what that means but it is a milestone of sorts]

Absolutely Knackered

I decided that I should wash the car as we are going out tomorrow. I'm absolutely knackered and thought at one time I was going to need to sit down for a while.

Many who know me would not be surprised at this shirking of hard work :-) but really, - I can only guess that the anaesthetic is still working its way out of my body as I wouldn't normally be this tired after washing a car. I was thinking of perhaps getting back to my exercises again but I think I might wait a few days.

An appointment has been made with the GP to go and "negotiate" over my blood pressure on Tuesday. Perhaps I'll discuss the whole package with him then.

The fear of becoming/being a professional patient

It sits in the back of my head that I'm concerned about being one of these "Professional Patients" - you know, the ones who have been there and done that got the Tee Shirt, DVD, Book (signed by the author) and can quote medical terminology, drug types, side effects, dosage levels and the latest research at you. They can then tell you in intimate detail the procedures, the cocks ups and the revisits that they have had.

I also don't want to end up down the GPs every few weeks getting checked out and pushed and poked and having "routine" blood tests and all that either. Having managed to avoid the inside of a GPs surgery for all but a very few times in 30 years I don't want to know what pattern the wallpaper is nor to be discussing with fellow patients when they will get around to fixing that piece of peeling paper in the corner.

Reading back on the blog last night (or early this morning) I was more and more concerned that I am spending time being a patient and concentrating on getting well, staying well and understanding it and managing it that life is very one sided. I expect that it probably has to be still for a short while. I've survived the past 9 months or so of this and now I've got to put this to one side and in a way park it and move on. If the dangers are receding then I can perhaps take a backwards step in these next few weeks and review this, park it perhaps, and then move on in a different direction.

A bit of a digression there but that's it really isn't it, time to move on and put this behind me, take a deep breath and move on.

Retrospective

Someone told me the other day that I had had a terrible time of it with horrible things happening to me. I suppose that is true. It is less than ten months since it all started. If you'd have told me a year ago I would have gone through this much I would have doubted your sanity.

Just listing the procedures is enough. The first signs and the weeks of terror at the abnormality and knowing "surely" that it was fatal! That truly awful local anaesthetic scope, the shock of the diagnosis even though I thought it was that all along, the operation and recovery period first time, weak as a kitten, still frightened, and then (Oh my God) that awful IVU X-Ray thingy when I truly wasn't ready for it. The next follow up operation and its unexpected outcome, recovering from that. The relief of the results but the subsequent realisation that whilst it looked better - things were more dangerous. The 6 weeks of Immunotherapy before Christmas. Getting better and fitter and getting ready for a New Year and then to be made redundant. The disappointment of the operation being set back and all the blood pressure problems and then the last operation. Putting it that way - how can I not say that I agree with them.

I ought to add here that on top of this you can add the stress, panic, strain, terror and pain. Then stretching your relationships with family and friends to breaking point, losing your get up and go (mine got up and went) and not really wanting to do anything or commit to anything either.

Let's add to that the problem of finding a new job that is going to be flexible enough to accommodate the next course of treatment. Let's face it, an interview now would mean that I may not really be able to put a full week in for 2 or more months.

I can add to this that there are other pressures that aren't immediately apparent. How about trying to plan a holiday - no one got a real holiday last year. The ability to commit to dates, other than weekends in case treatment clashes or overruns. Whether or not your insurance actually covers and whether the Consultant and GP will get the right forms back. I mean it has only been 6 months they have been trying to sort this out. Who knows whether the damn thing will ever pay out. If things had have been worse then you can imagine that the family wouldn't have got anything which sort of defeats the object of taking it out in the first place.

Loss of concentration, lack of any ability to plan, loss of enthusiasm for anything really, stuff screwing up your thoughts and a brain that just wont do what I tell it too (perhaps my brain has turned female??). Not getting much sleep and processing lots of options and what if scenarios - you know what if this happens, how will I do this, If I cant find a job how long can we last, will I be around for my Kids graduation / weddings and all that sort of guilt stuff. Oh yes and if only I hadn't have done so and so in 1970 something.

I am sure I could add to this list a couple more pages of negatives.

What about the positives?

Better life style than ever
Heightened sense of the ridiculous
The experience (I doubt I am a better person - just changed)
Major changes coming
Fitter

I can't think of many others at the moment. I am amazed at the recuperative powers of the human body. I saw people smashed up worse than I was and they recovered as did I. I really felt beaten up the first two times and either I'm getting used to it or resilient or I'm just plain too stupid to feel knocked out! I am amazed how you can deal with a situation in many different ways and the processes you have to go through to achieve your goals. The demons you have to slay for yourself and the way you do that. I'm more surprised that I have the ability to be patient with people who are utterly stupid or just plain bloody ignorant. Whilst I like to show a hostile and belligerent attitude - I do try and be measured even when people are being downright stupid.

Of course I'd never ever wanted to be in the position, but I am. What can I observe looking back? Not a lot, I did some important things to aid my recovery and stuck to them. I took it upon myself to find out all I could - disturbing as that was. I know what the options are and I have the ability to discuss those with my consultant and her team. I trust my team and I do everything that I can to support what they are doing. I may not like what is happening to me but I will not stand in their way, I may whinge about it but I do get on and have the treatment.

I took it on myself to change the way I lived so that it would support the work that was being done. Being fit enough to be treated and fit enough to recover are MY side of the deal.

Writing it down is beneficial for me and (I am told) for others. Sometimes I don't like reading things that I wrote but I will leave the comments there for people to see.

I am so glad I didn't get anything more serious, more invasive or more deadly.

I still haven't realised how close I came or still could come with this. A few layers of cells - that is all, a few layers of cells.

We won't do was it luck or something else tonight - or as it is in the early hours of the morning. I'm afraid that hasn't stopped happening. I have the worst sleep patterns these days.

A very strange old day

It has been a strange day and I'm going to retire hurt in a moment :-)

So many people are happy for me and I'm sort of quietly happy for myself and my family. We are the only people not shouting about it. Strange isn't it. Almost a surreal experience - I wonder when it can have even been so arse about face?

Why am I not celebrating

I just spoke to my friend who is cancer free and therefore cured. Same with him, no reaction apart from thank goodness, that's good, nice, great etc.

We were working out whether that is because it isn't a binary thing. It doesn't just happen. That the stress and trauma of the past which is all bottled up and generally hidden is suddenly released and that is suppressing your elation.

Perhaps because you are geared up to hear the absolute worst case scenario and then get almost the opposite news - it is just so hard to take it in. Who knows - the shrinks would have a field day and I'm sure I could find my Kubler Ross area - if so then I am probably "testing" at the moment.

It is weird as I am gradually and quite cautiously letting people know and yet although I am happier today than I was yesterday I'm not ecstatic nor am I anywhere like where I thought I'd be.

Have I become over cautious, more pessimistic or perhaps something else has changed in me. I mean after this news I'm meant to pack it all in, buy a yacht and sail around the world or something like that and I don't feel like that either. I suppose we will have to see how it pans out over time. Sorry not to be leaping up and down and whooping and yelling. :-)

My New Toy has arrived

A proper blood pressure monitor with an arm cuff and averaging on it etc. First readings are good and show that my little wrist monitor wasn't as bad as we first thought.

I've now started a chart and will do morning and night as I need to go and see the GP next week for the next steps in getting this sorted. I've a feeling that Tuesday will be a fun day.

Gradually it sinks in

A flurry of phone calls this morning and a very sleepless night. Slowly I am beginning to "get it" - It's not seeing the light at the end of a tunnel I decided. It's changing motorways but not knowing how long you are on this one for as I still don't have a clue where I'm going, my maps aren't drawn yet and my GPS only tells me when I'm almost at the junction what to do next :-)

Note to self - stop talking in metaphors or similes as these are like signposts clouding your blogs?

Glossary / Vocabulary

I don't mean to stuff in buzz words but of course it happens from time to time and reviewing some of my posts there are a few words that need definition

THIS LINK takes you to a list of acronyms used.

Why is Abbreviation such a long word?

It still isn't registering

Come on brain - I sometimes have the brain speed of Homer Simpson. I've just written off to lots of people I know to tell them the news and I am not upbeat about it at all. It is all matter of fact and I'm not leaping around punching the air or any of the other things that I thought I might do.

I've probably spent so much time downplaying my chances so as not to be disappointed that the shock of getting a good end of term report has quite shocked me. No straight "A"s but with a bit more effort on both parts that is achievable.

Perhaps I have now glimpsed the beginning of the end or the light at the end of the tunnel. I've only seen this last 9 months as the worst period of my life and hadn't expected to start to come out of the other side quite so soon or quite so fast. I've hoped and I suppose I've taken some serious knocks along the way - the second operation and losing my job were two further kicks in the teeth I could have done without. But hey, this is good news and yet others are more pleased than I am about it.

It is damn strange me wanting to be free of this and working towards getting well again and then when I get some encouragement I blink hard and find it difficult to believe.

I sound ungrateful but I'm not. I'm certain that these are the tricks an illness like this plays on you. You just don't trust things and you need double assurances. Perhaps grasping for straws too early and being let down means you are just that much more cautious. I'm cautiously optimistic and yet, if all is clear there is light at the end of the tunnel - it is long term and we are probably talking about 10 years of treatments (maintenance) and flexible cystoscopy examinations before getting an all clear and, nasty little thing that BC is, it can come back and you start all over again.

There is no pleasing some people - I think I just turned into "Some People" :-)

Dare I believe the news?

I still can't believe that things may now be OK. I'm still stunned and I can't believe that I heard it properly. I'm hedging my bets and waiting until I hear from my Specialist in a few weeks time, with the evidence with the staging and with the next steps.

I really still don't know whether to scream it out loud or just sit back and wait. I can feel the stupid grin beginning to crack across my face already.

The Yukky Bits

Well there had to be some blood and gore I suppose. Fortunately the bleeding (in urine) only lasted overnight and so that was a relief. I think it was a few days last time and about a week the first time and then I managed to do myself a mischief later. It is always disturbing especially as there are bits in it but, at least this time I knew that it would be so. It doesn't make it any easier because it is such an unnatural experience.

I'm still taking it easy. I caught myself running up the stairs earlier and I really shouldn't do that. It goes back to the "how do you feel" and also that you can't see or feel any surgery (no scars or stitches) you have had so it lulls you into a false sense of security. For the next 5 days or so, everyone else knows best and I SHOULD listen to them. I really do feel fine now apart from the aches and pains around my middle and certain other somewhat swollen areas shall we say :-)

Anyway - yukky bits are over for the moment. It looks as if I have the next round of yukky bits to come if and when they prescribe the next course of BCG which (very much looks like) has worked on the initial areas.

Pulled and pushed and poked about

Judging by the aches and twinges and an oblong of missing hair on my leg (ouch - it looks like a 6x4 elastoplast has been ripped off my leg) - they sure did pull me around.

My stomach, back and legs ache so I guess that is dragging me forwards and backwards on and off the trolley and getting the cystoscope where it needed to go. That's painful just thinking about it :-)

Oh yes, that is painful too - imagine getting kicked there but it taking a few days to get the bruises out. Sorry I can't be more graphic than that but it is uncomfortable rather than painful and there is a fair amount of "holding breath" goes on when going to the toilet. It takes a few days to get back to comfortable and about a week afterwards things should be OK.

Scar Wars IV – A Scrape in Time

Scar Wars IV – A Scrape in Time
(Cue Music)
Episode IV
Our hero, captured by the NHS Guard is held imprisoned at their secret Headquarters cunningly disguised as a Hospital.
Stuffed full of Pills, brain altered through hypnotherapy he tries to escape from the evil clutches of Dr. Catheter and her foul band of followers, Captain Cannula, Sergeant Ivy Drip, Naughty Night Nurse (Yea I wish!) and Volunteer Trolley.
Can our hero escape, are the walls too high, are the steaks too rare, will the car park be empty, does anyone care?

Why am I asking you?

Light Sabres ready?

Underpants over your trousers?

Read on – if you dare…….

It was different this time. It was an early morning start, The Hypno stuff kicked in nicely and anyone who knows what a wimp I really am would be surprised as they only needed one herd of stampeding Elephants to get me in. Well no – I walked in fine and I amazed myself.

The evening before had been interesting as I wasn’t my usual bag of nerves and being hypnotised and also having some drugs to control blood pressure and heart rate were also a godsend as I was so much calmer this time walking in. I had even managed a good 5 ½ hours sleep – unheard of.

All that changed though. They looked at the list and I wasn’t on the morning list. I was on the afternoon list! Heart sinking like a stone we were about to leave but were asked to stay. 3 ½ hours later they allocated me a bed and so I was able to get ready, in some form. The wait had been almost unbearable but I listened to my MP3 player intently and just switched off – in my own little world. A real annoyance is that the have placed a water machine in the admissions lounge. I hadn’t had a drink since the night before and all I could see were people coming in and filling their cups and the water bottle gurgling. Another mind trick devised by the NHS without anyone thinking of the way it pisses off their customers.

There is nothing quite like having nothing more to concentrate on than having your operation. Have people at the NHS never had this experience? If they had they would surely change the system – no one “wants” to be there. So after settling in, getting changed and doing the obligatory measurements (NO not that one) I was fitted with my rather fetching DVT socks, Operating Gown (hello Cheeky) and placed on my pre op bed slider etc. I then had the rest of the time remaining to lay down, listen to music and look out of the window and contemplate the upcoming proceedings.

As is always the case when you are on “Nil by Mouth” the food trolley and drinks trolley come around, some one pokes their head in and then see the card and says “sorry”. The waft of food and clinking of tea cups soon gave way to a quiet period and I was settling back when about 2 pm the Registrar arrived to “consent me”. This is the form that agrees for them to operate, take appropriate action, turn you into an Arsenal supporter, have possession over your immortal soul and many other caveats and small print that you haven’t the time or the inclination to read thoroughly and that provide the team with a get out for everything including nuclear war, earthquake and political upheaval – all the things a standard insurance policy will not give. Acts of God included.

The registrar described the procedure. I have to tell you I questioned just about everything he said. The way he was talking this could be worse than the first or second operations. 2 days catheterization, possible puncture of the bladder wall! Jeeps what were these guys going to do to me – I thought it was a few biopsies – he was talking re re-sectioning and I had that last time. I did mention that and he said it was a "maybe" and a "worst case scenario". I started to prepare myself for a repeat performance of the previous operations. I had a totally different view on what they were going to do but, I had to be ready to wake up in the state I was in last time.

Having signed the form a few minutes later the porters arrived to take me to theatre. I was a bit surprised as I hadn’t seen the anaesthetist and so I grabbed a copy of the notes I made about my meds and took those down to theatre with me.

The banter was interesting the Assistant Anaesthetist was chatting to the porters about their tattoos and wondering whether it hurt. There was a sort of general consensus about whether it did or it didn’t and the upshot was that where the tattoo went over a bony part that it did. That decided - and me looking to find another piece of paint drying - I finally got wheeled in to theatre. We squared away the meds I was on, sorted out which hand to stick the cannula and, as always, I got the blunt one again! This was really the only point at which I felt anxious and I did some deep breathing until they put in some mild pain killers and then that was it. Off to the land of Nod.

I remember coming too and being very pleasantly surprised that I didn’t have a catheter in place. No drips, no water bags – I was even reasonably conscious.

I was wheeled back to the ward where I finally got some water. I had been gone just 1 ½ hours and of that 30 minutes were spent before I got into theatre and I reckon I hadn’t been in for more than 10 or 15 minutes.

I was told that I could go home if I could pee normally and so I started drinking loads of water. Knowing what it was like last time, I decided that the best strategy was to show them a good jug full. WRONG! No they wanted a series of these – If I’d have known that I would have worked on a series of smaller ones. Of course last time I did that they weren’t happy and did bladder scans. We now come back to not being allowed to drink for what must have been close to 18 hours by then. I had no drip to hydrate me and so I was drinking litres of water at a time. The upshot was that it took me hours to produce the required quantity and yet if I had managed to show them a steady series I could have got out earlier. In the urology ward I think things would have been different but there you go. I got out at about 10 p.m.

The Specialist saw me and was very upbeat. A very small area that was suspicious, which was TURBT and taken away for analysis and a series of biopsies on the original and other areas. The view that they had was that apart from the one tiny area everything else looked fine. In a few weeks they might be able to downgrade. I might have to do the BCG again but (hey) that isn’t so bad.

Right now, I am coming to terms with what that means. I think it may be too early to break out the Champagne but perhaps a small celebration might be in order? Hey, why not a big celebration? I think it will take a little time to sink in, part of me is saying it is great news - the best, another part is saying that it is a little disappointed that not all of it was got. Another bit, unheard until writing this says something entirely different - it has to be good news as if they had upgraded rather than downgraded then you would be in trouble. It's like when people win something and they say "it hasn't sunk in yet!" I know exactly what they mean - I don't know whether to laugh or cry, run screaming out into the woods or what. I am very pleased though - relieved and pleased.

News - some good some bad

But - on the whole it is all good news so far.

Bad News:

• They had my appointment wrong I should have been late morning - I could have ate and I could have had some drink (more later on why that was important)
• There was s small area they had to TURBT but it must have been small as I was not catheterised

Good News:

• Apart form a very small area everything else looks good and should be downgraded in a few weeks
• No Catheter - you cannot believe how much better you feel when you haven't had one
• Home in a day
• I was a lot better than I normally am

I am home - I am OK

What a day - what a day..

I'm home, I'm tired, I'm going to bed but I am fine. More later.

Less than an hour to go now

I've had my shower and I am just going through my check list of things. I have to be at the Hospital at 7:45 meaning about 7:15 away from here, getting parked and then walking into to the admissions lounge. I do hope that they are not showing Casualty or ER like they did last time I was there. Either these people have an advanced sense of the ridiculous or they are sadists. I think they had one of those programmes last time live from some hospital and frankly it did nothing for my nerves. I remember turning the damn thing off when someone left the room.

For the first time I'll have already had my assessment and so it will be straight onto the ward without all the medical staff fussing over me.

It seems quite strange me calmly sitting here at the PC when all the other times I have been sat here but playing solitaire or tertis or some such thing with my headphones on and locked away from the world. Today I'm the opposite to that.

Actually Slept

A first - a reasonable and quite creditable 5 hours sleep. I listened to some music and then went to sleep. Had some strange dreams but not too upsetting - all were about different experiences of what today will bring.

Woke a few times but other than that - it hasn't been too bad. I've had my tablets with a tiny amount of water and I'm just going off now to have a shower and start to get myself ready for the rest of today.

I don't feel the normal dread - nor do I feel anything approaching it. A little apprehensive of course - but otherwise OK.

114/79/65 - that will do nicely :-)

Support

Nice to get some phone calls of support this evening and I'm still feeling OK. A little bit "quiet" but OK nonetheless. I thought I was going to go into one of my shells for the evening but that hasn't happened.

Everyone else has gone to bed - I am just watching a film and having a last drink. I can then do the last few minutes of checking I have everything and then be ready for the morning.

I'm just surprised I am still keeping it all together.

Leave it alone

That is it - I shall leave my desk now and wander downstairs and try and find some other distraction for a short while.

I need to do a final pack of stuff to take with me and then I can just have a few things to put in the case tomorrow morning.

7:45 is an early start considering that I am not allowed any drink past 6:30 I need to be up in sufficient time to have my tablets and I cannot eat past midnight. That's what happened in that film Gremlins! I'd better watch out then - I don't want to turn into one of them!

Wish me luck :-)

How low can you go

No not limbo dancing! Doh!..

I thought (as you do) it would be fun to do my BP readings 117 / 75 with a pulse of 65.

Any lower they'd have had to check for breathing signs!

Not bad considering my usual condition this near going in.

Going into my shell now

I can tell - very short answers to questions and not offering more than that at all. I'm nowhere near as bad as I have been but now I'm getting into the introspective part. I do go very quiet and start to switch myself off from now on.

However, I'm not as nervous as I have been at this point in time. I suppose I will have to wait and see how I mange the next 14 hours?

Not Me

Something interesting I was just talking to a friend of mine about. "Not Me" - another strategy to use once you are in Hospital. It can be a way to get through whatever you are having done by imagining it is happening to someone else. It is a strange thing but after a while you tend to look quite distractedly at what is happening to you. What can you do about it after all?

You are on the roller coaster and you just need to shut your eyes and get to the end of it. So just divorcing yourself from the reality of the situation can be another tool. It was like being disconnected from reality and seeing things happen and not worrying that they were happening to you at all.

Anyway, that is another way around some of this stuff. It will be interesting to see what tomorrow might bring. It kicks in once you realise that you are not going anywhere and you just have to roll with it.

Calm Things

I've decided to start listening to some music now and have my MP3 player pumping out some sounds. For the record (no pun intended)

I have:

• Jean Philipe Rameau - Une Symphonie Imaginaire
• Sting - Dream of the Blue Turtles and Brand New Day
• Mike Oldfield - The Complete Mike Oldfield Vols I & II
• Ludovico Einaudi - Le Onde and Una Mattina
• Antony & the Johnsons - I am a Bird Now
• Coldplay - Parachutes
• David Gray - A New Day at Midnight and White Ladder
• Hootie and the Blowfish - Cracked Rear View
• Jean Michelle Jarre - Oxygene, Equinoxe and Rendez-Vouz
• Yann Tiersen - The Amelie Soundtrack
• Jools Holland - Small World - Big Band
• Mel C - Northern Star and Reason
• Mozart - Requiem (yes I wondered about that too)
• Travis - The Invisible Band
• Pink Floyd - The Dark Side of the Moon
• Odds and Ends include Band of Brothers theme, Byrds, Argent and Colin Bluntstone's Old and Wise.

Things that got missed out this time:

• Michael Nyman
• Classic FM - Do Not Disturb Classics
• Crosby Stills Nash and Young
• James Taylor
• Carole King
• Alan Parsons Project and Colin Bluntstone
• Seal
• Bruce Hornsby and the Range
• Ex Cathedra - South American Baroque music
• Karl Jenkins - Requiem and the Armed Man

No Dreams or Nightmares

It is funny that I haven't had the dreams and the nightmares leading up to this admission. I had them some weeks ago. Perhaps the medicine and the hypno have taken away some of that?

I am pleased that I am still OK and not lying down in a darkened room like I normally am. It really is quite strange not to be all wound up and upset. I've been slowly building up to packing my bag and all the odds and ends to take in. I have a list of things here.

Keeping busy is all very well, it is running out of things to do that I'm more worried about.

I'm thinking that by this time tomorrow - I should be out and back on the ward and just relaxing - let's hope so.

MP3 Player - brilliant

Impressive - over 265 songs on my MP3 player - that should be enough for a week let alone a couple of days...

The last time I went in with a CD player, spare batteries and about 16 CDs. This time just a few spare batteries and the player which fits in my pocket - it is amazing.

Positive Thoughts and Suggestions

These are the thoughts that I have to put in to reinforce the hypnotherapy work. Those of us, of a certain age, will snigger a bit at the first and last ones as they were what Frank Spencer used to say in "Some Mothers Do 'Ave Them". However, I'm not going to knock this as it works for me.

There is far more to the session than this of course - these positive suggestions just need to be repeated every now and then. That makes them more powerful each time. Don't forget that these thoughts are already in my subconscious.

• Every day in every way I am getting better and better
• I am in control, I create my own reality
• Negative thoughts have no power over me, I am in control
• I create my own reality through the power of my mind and this is so
• I persistently think and act in the direction of my good and my goal; to be a happy, healthy, relaxed person
• I am love. I am loving, loved and beloved
• I am healed by the Creative Force within me
• My body knows just how to keep me well and I pay close attention to its signals. I obey those signals, I relax, I let go and stay well
• My body systems are co-operating with the surgical procedure, we are all working together to create healing
• My blood pressure is normal and will stay that way
• My lungs breathe easily and effortlessly
• Every day in every way I am getting better and better

This time tomorrow

I'll have been "in" for an hour. I'm a lot better this morning and my back is just lightly twinging.

Today is as much about preparation as about sorting out the odds and ends of bits and pieces that have accumulated on my desk these past few days. So much paperwork and notes and post-its. I'll work my way through these to keep myself busy today.

That is a big part of today's strategy. Keep myself tied up with a list of small things and use up today's hours distracting myself from tomorrow's goings on. There are a number of things to do including packing, setting up my MP3 player, sorting out a book to take in with me and just doing some reinforcing stuff that my hypnotherapist left me.

The rest of the day is going to be spent trying to sort out the non balancing balance sheet :-) some letters and cheques I need to pay in and to catch up with invitations and acceptances and other stuff too.

Coming to terms with the outcome

It hasn't happened yet of course. I'm hoping that things have gone well and that I'll be put on maintenance. Like last time, of course, there is the possibility that they will find something and operate straight away. I won't know until I come around on that one.

The very worst that can happen is things have got seriously worse and that they'll need to do some serious work on me. I would imagine they would have to tell me after they had done biopsies etc.

If the treatment hasn't worked but things haven't got seriously worse then they can do another set of instillations and potentially they can do another batch with some heavier chemical cocktails in them.

I realised only recently that I really hadn't come to terms with either the seriousness of my condition nor indeed quite what it was going to mean to me. I think that I deal with it in a way that it isn't that serious (to me), it is treatable and that it isn't going to get me. I'm not sure of my level of conviction when I say it though. I think I have more doubts now (some brought about by the delay) that I did 3 or 4 months ago. I've been told by a number of professionals that I have had some nasty stuff happen to me and it was no wonder I was stressed out. All in all I have realised - perhaps in the past three or four weeks - just how serious and how nasty bladder cancer is especially in its CIS form.

This new "calmness" has been a relief to me as I feel very much at ease with things and perhaps able to cope with the next steps in treatment. I'm so pleased with the hypnotherapy - I really am finding it difficult to think in any truly dark and negative ways, those thoughts are turned and held at bay.

But there are loose ends in all of this too. It isn't just the treatment, it is things like insurances, job, career, family, friendships. money, lifestyle, overall health and a combination of things that all add to the mix. It isn't just a yes or no after Wednesday as each element (and I'm sure there are more than the few above) are going to interact with the other to dictate the next route to follow.

I need to get away from the guilt of having the luxury to think like this - some folks never get the chance do they?

The work / life / balance thing has never been more apparent to me than at the moment. Clearly I've made some quite important changes to my diet, my lifestyle and my outlook. The next set of decisions - post Wednesday - will probably also change the way I live my life from that point onwards. To date I am holding back and I'm still being very cautious. I wonder if I will throw caution to the wind or take the brakes off a bit, whether I'll look to work back in the fast and furious world or take a back seat. I wonder too if I'll be looking long or short term on such things?

Someone said life begins at 40. I'm 50 later this year - perhaps life truly begins then for me?

Speculation is fine I suppose - I need to wait until Wednesday and then perhaps a few weeks later to really know.

A bit better tonight

I did no exercises this morning and my back has been rather tender all day but now, late at night it appears to be a lot better. I really didn't do much today and so almost complete rest. I'll see what tomorrow brings as I'd have liked to have done some more exercise before going into hospital. I will probably have to stop for a week afterwards remembering what they told me last time I was in.

I'll spend some time getting ready tomorrow and sorting myself out ready for Wednesday. I'm still feeling remarkably calm (for me) and whilst I'm not looking forward to the event, I am not like I usually am and getting more and more stressed out.

I really am quite impressed with both the medication and also the hypnotherapy which seems to have helped quite a bit.

Not a lot better this morning

My back is still giving me twinges to remind me it is there. I can only imagine it was a combination of loading, unloading and dragging the bouncy castle around too :-) Plus being on my feet the rest of the day here probably didn't help.

I hope I've gotten rid of this by tomorrow or Wednesday latest otherwise going into Hospital is going to be added fun.

Talking of which, I still appear to be a lot calmer about that than I have been before and I am not getting that "dread" feeling too. I am really hoping that I can carry this through over the next few days.

I paid for it on Sunday

Bad back - I wonder if that was the Easter Egg Hunt or pulling the BBQ out of the shed or just as I was on my feet for most of the day?

Whatever I have a sore back and whilst I can move about I can only do that slowly.

Long, Long Day

It was a long day today, we started early and went to set up the Easter Egg Hunt and together with some really superb friends we had a wonderful morning and I really hope made some young people's day. I felt really good about our efforts today and I am sure that those who attended enjoyed the entertainment we put on.

Later on we had friends over for a barbecue. That took a bit more organising and work than I had expected. I unleashed my secret weapon recipe. Hot plums on Toasted Hot Cross Buns. You must try this. Slice up some plums (they say grill them). I put them on a searing pan and then cooked them down adding some honey and then after toasting some Hot Cross Buns, empty the plums and honey onto them. Wonderful.

A good day...

Crikey

I do 6.5kMs on my cross trainer or more every day - that is 4 miles roughly. That's not bad at all.

In on a day like today

I remember my Mum saying that to me - it is a wonderful day outside and I am - stuck in here! I think I will try and wrap everything up in the next hour and sit outside.

My BP is even lower and all is ship shape today. I suppose I had better look out for getting a BP reading of 0/0/0 !

Morning Report

Well - I got back up to 30 minutes exercise - a few minutes afterwards my BPM is 90 and I have a BP of 125/75 - stunning.

I still feel really good and not at all worried about going in on Wednesday. The ache at the back of my hand has gone too. I'm not getting any of those jitters and rising stress that I normally get either.

I have the house to myself as the family have gone off to London for the day and I need to concentrate on some accounts that are giving me a headache, some correspondence that I should have looked at a few weeks ago and getting ready for tomorrow's Easter Egg Hunt at the Old People's Home.

The weather looks set fair for today and tomorrow and so we are going to have some friends over on Saturday afternoon and who knows, I might even wheel out the Barbecue for its first outing of the year.

Quite relaxed about this

I am surprisingly relaxed about things at the moment. The rising panic and stress seem to have gone and I'm going to have to put that down to the tablets and to the hypnotherapy.

I was really sceptical about this before but having had three or four sessions now it really is interesting. The one amazing thing was that you lose your sense of time. I thought I was "under" for about 15 minutes and yet this time I was out for 55 minutes. The experience was totally relaxing and a little psychedelic too.

I'll see how I am tomorrow. Spooky!

Don't try and do double entry bookkeeping

with a fuzzy head. Cor - this is doing my head in and I have a small anomaly in hundreds of entries and blow me - it is taking ages to find it. The good thing with a balance sheet is that when you do find it everything just falls into place. I'm really puzzled on this one, it is such an "obvious" amount.

I keep having to take my blood pressure and pulse - it is SO strange having so low a set of readings. Also my hypnotist has also left me chilled out too (well chilled out but sort of up and lively as well if that is possible?).

It is too early to say whether he has managed to cure me of my fear of Hospitals and all that so watch this space. All the positive messages are great though and its the like many of these things, a positive mental attitude, optimism and taking control yourself (if you can) all seem to help. I'm hopeful that I can now look upon the experience of going into hospital as one of taking the next step to health rather than anything else. Anyway. let's see how we progress with that.

Second Day on the pills

And my Blood Pressure is tumbling. I think 115 over 65 is pretty low and 75 BPM heart rate is pretty low for me.

I suppose I ought to come around to everyone else's way of thinking now then that this probably was a good move.

Just Call Me Mr. Horizontal

No - just do it :-) My BP is the lowest I have ever seen it, my pulse is a trace and I feel brilliant. How much better can today get? If I was any more laid back I'd be horizontal...

Hypnotherapy

I'm no Wacko - strange, peculiar, quirky, off the wall, and other descriptions may well apply but I'd give a Life Coach a good kick in whenever I met one and I don't believe in mumbo Jumbo and "the Law of Attraction" which sort of says that I deserve to have Cancer may, as you may imagine, really upset me!

So - Hypnotherapy - what do you think - strange, weird, all a bit stage show and people barking like dogs etc?

In my limited experience, nothing can be further from the truth. Some time ago I had hypnotherapy to stop my craving on smoking. Nice job - how about this - no side effects, no cold turkey, no screaming at everyone no standard withdrawal symptoms like yelling at everyone, tearing my hair out, over eating etc. So what I hear you ask?

Well - I'm terrified of going into Hospital - it is the most frightening thing for me - I don't know why but it is. You must have guessed that from my previous posts. So I spoke to my friend and he agreed to come around this morning and work his magic on me. My Guardian Angel has something to do with this - I got an e-mail saying do it OR ELSE :-) I need no more prompting than this as I can imagine getting the wrong side of this lady :-) I'd have my arm ripped off and be beaten with the wet end if I didn't. I'd back her in celebrity death match against anyone!!

He used a "wellness" script (some people may recognize that phrase as "snake oil" but in this case it isn't) It was really good. Usually I am in quite a shallow trance (basically because of being sceptical). This time I was in quite deep and it was really quite "Trippy" but based on what was being said. I thought I'd been out for 15 minutes where in fact it had been 55 minutes. I won't really know how this has worked until next week of course but I feel fantastic (You often do coming out of hypnosis) and I can (at the moment) think about next week without getting wound up about it.

I'm not feeling at all anxious, upset or funnily enough that bothered about it and yet I have been for ages. I remember this from the last sessions I had and I have to say that if it worked then and after 20+ years of problems - solved them - then this too is a bit of a success. I certainly feel an awful lot better than I did before.

I will keep you posted - I now feel good about going in next week - how strange.

Amazing

I can see why they ban Beta Blockers in sport. I decided to do just 20 minutes and took things easy. I managed to complete as many kMs as I normally do in a session. I am hardly out of breath and my BP and Heart beat are low even recovery has been quick.

Surreal Thought of the day

So - I'm at a Jazz night and there is a chap who plays the Washboard.

Anyone under the age of 50 may want to be excused at this point. A Washboard is a corrugated piece of metal they used to wash clothes against and scrub them with a brush years ago.

OK - In a Jazz band they washboard is played with metal thimbles - here we go again. Thimbles are things for protecting your fingers when sewing (please don't ask me to explain what sewing is!!!).

So sticking thimbles on your fingers and rubbing those up and down a galvanised and corrugated board makes a rasping sound ideal for Jazz songs. PHEW - so far so good. I wished I'd thought how hard this was going to be before I started writing it :-)

The surreal thought is this. The chap that plays this turns up tonight night with his wife. Go back 50 or 60 years when they are courting and she takes him home to meet her parents. Can you imagine what the conversation would go like?

Father: "So what do you do for a living?"
Player: "I play a Washboard"
Father: (somewhat taken aback but being British) "Will it keep my girl in the style to which she has become accustomed?"
Player: "I don't know, what instrument does she play?"
Father: "So what do you actually do playing a washboard?"
Player: "I put on a bunch of metal thimbles and strap this washboard around my neck and run my fingers up and down it to make a sound."
Father: (Looking curiously at his pipe which has begun to sag out of his mouth and taking a large swig of his Whisky) "And you make money doing this?"
Player: "Well yes, kind of"
Father: "Mother - come out here and listen to this" (Waves Pipe in the air in a beckoning way)
Mother: "Yes Dear?"
Father: "Doris's boyfriend plays HIS washboard and makes money doing so. How come you just wash the clothes and I've so far had no return on investment?"
Mother: "You are such a Banker!"


OK - OK - I have probably just proved why you shouldn't do these Heart control drugs!

Kids - don't do drugs......

:-)

What a difference

In just one day I am amazed that my blood pressure has reduced by so much and my heart rate too. Of course the drugs are doing what they are supposed to do but I've never seen readings like these and even at 11:30 at night my BP is lower than that when I wake up.

I'm beginning to get used to the light headed feelings. I'm sure they will go away once I get acclimatised to the side effects (or perhaps the results).

So I'm going to take myself off to bed - apparently a side effect is a disturbed night's sleep.

Light Headed or what?

Blimey - these meds have really kicked in - talk of felling light headed. I can definitely feel the difference.

I am going out tonight to listen/see a Jazz night. It was great last month - I suppose I had better be a little wary over this new found almost floating sensation.

No - Ridiculous

Yes - absolutely ridiculous

My BP is - well - so low I can hardly believe it and I am concerned that a heart beat getting close to a beat a second can't be that great :-)


We are talking a massive decrease in Blood Pressure - no honest - 116/75 at 65 BPM in the late afternoon that is better than my lowest by a long way - Whoa! At least my nurses will be pleased and...

Guardian Angel :-) .....

If you are reading this - my Hypnotist friend is coming around tomorrow to see if we can combat my phobia about Hospitals, needles and the like.

Now wouldn't that be a leap forward if that could happen? I'd be really pleased if I was able to control all of the fears and worries on that side.

Appears to be doing something

I decided that I ought not to do the exercises this morning and instead had a small breakfast and took the tablets. They did kick in although nowhere near as "punch like" as I was expecting but I do feel a little light headed (not feint headed) and I can tell my heart isn't beating anywhere near as fast is it has been these past few days. Blood pressure is down, not markedly, but down nonetheless and it is in the normal band.

I'm taking things easy this morning and making sure that I am getting up and down slowly and not doing anything stupid just in case.

It is not as marked a transition as I had expected but I do certainly feel something has changed. More as it goes on I have no doubt.

How to tackle tomorrow

I'm not sure how I am going to do this now. Do my exercise routines first and then have the tabs - but that would put those out to way gone 9 perhaps even 10 a.m. Maybe I should not do the exercises tomorrow and just go straight in for these and see how I get on. Perhaps moving exercising to the evening.

I feel that I don't want to break my routines now I have set them up but I cannot see me taking the tablets and then doing exercises as that won't work and lets face it bashing out 30 minutes on a tread mill after sticking a beta blocker in your system to slow your heart down doesn't make any sense either.

Oh well I shall decide in the morning. I did spend plenty of time relaxing yesterday - indeed I had loads of time to myself as everyone was out for the rest of the day.

Taking the rest of the day off

I've had enough today - I've done my business bit, I've been to the bank as well to sort out a problem that just never seems to go away, which is that they cannot get my address right and send my bank statements where they fancy :-) Worried about identity theft? Join my bank and they make it easy!

As it is my daughter's 17th birthday - just had her first driving lesson and frightened the neighbourhood - I think that I should take the remainder of the day off, relax, perhaps have a beer and celebrate. I don't take enough time off to myself or for my family and perhaps I ought to be less than serious for the rest of today. The becoming a drug addict stuff starts tomorrow! :-)

Keep Taking The Tablets

These tablets are minute. You need to employ an optician to see them.

As I am driving a little later today I don't intend to take them until tomorrow morning. I have also been warned to be sitting down to start with as the effect is noticeable quickly.

I have also just ordered a more accurate Blood Pressure Monitor. The Wrist one was not good enough to give the readings the Doc wanted so a new one has been ordered to arrive by next week. I'll be able to put together a weekly review of blood pressure so that we can chart it. As the GP said - it is pretty obvious that you'll get accurate readings at home. He then took my pulse and said "It's a little bit fast - but that is to be expected but the good news is that you must like me so that IS a result!" I like this GP - I really didn't get on with the last one at all - he had the bedside manner of - well Attila the Hun.

I Don't Do Drugs

I DO now!

I'm on beta blockers for a short while to get me through the operation next week and I'm on some very mild BP tablets as I'm prehypertensive - none are going to punch the daylights out of my Kidneys (for obvious reasons).

It is a rich man's game being ill - a two week supply of one and a four week supply of the other £13.70. I feel quite privileged that I have enough money to be ill.

I'm off out to day so I'm not going to tempt fate and have one of these tablets until tomorrow morning, and then I need to be sitting down. I need to curtail my exercising or keep it at a reasonably low level as all these things kick in to slow my heart and to lower my blood pressure.

I expect that this story will run and run.

Jekyll & Hyde

That's me. I'm not actually that bad but I do get pretty much like a cornered animal before having to go to the Hospital or the GPs. Not so much the GPs perhaps although the Doc I am seeing tomorrow is a nice enough chap.

Leading up to today from about mid to late morning there was no laughs no normal mucking about it was all business and "lets get this over with". Now I am almost a different person.

Pyschosematic stuff

How peculiar that the back of my hand is throbbing like it normally does when I have the cannula taken out. I suppose it is one of those things that happens and you start to relive some of the stuff you know is going to happen to you.

I'm reasonably OK with this at the moment. Tomorrow will be an interesting day to see how this is all going to be tackled. I've seen my results tumble but when I get near anything that even looks medical then BP goes skywards.

The crazy bit is how low my BP is in the morning and especially shortly after exercising. No use second guessing what they will do tomorrow as long as there is a road map through this.

The Countdown Begins

So - back on board the Roller Coaster next week and preparations start now for getting myself ready. There is the mundane stuff - "Don't forget your toothbrush" and the slightly more serious (for me) of not forgetting my MP3 player (used to be my CD Walkman) so that I can try and calm down a bit. I also need to pack a book and some glasses so I can read the damn thing. The lights are so severe at the Hospital it is all or nothing.

I'll also need to sort myself out for the sitting around doing very little business straight after - 1 week rest is normal unless they have to do what they did before and I end up 4 weeks of little or nothing.

No doubt there will be more detail soon as I think about it. I'm still slowly calming down after being given the OK. At least my 24 hour monitor didn't show the sorts of readings they were getting. The way she was questioning me I would have expected them to have whipped me straight in.

That was touch and go

My Urology Nurse was there - she knows I am stressy and so we did the BP tests and as expected they were through the roof - not as bad as last time. They came down gradually and I gave my readings from this morning which were pretty good.

It got to the point of almost being refused but they picked up the 24 hour tapes which obviously changed minds a bit and so I have to go and see the GP tomorrow - no doubt for some form of treatment and can therefore carry on with the operation.

The funniest bit was when she said she was going to do the blood test the readings went through the roof again. I often wonder why I am the person least surprise by such things - when they are about to stick a needle in you would you think your blood pressure would fall?

I am in a strange position now as I am looking forward to getting this sorted out and yet I can feel the stress beginning to build again and my the back of my hand has started aching - that is where they put the cannula and I'm sure it throbs every now and then just to remind me.

I have the appointment tomorrow morning and I hope that we can get this particular problem under some sort of control and then get on with sorting the next piece of the puzzle out.

It isn't a quick fix either - I originally thought it was going to be one of those binary things - like it is or it isn't fixed and all that - it would all be over by Christmas (sort of thing) and it isn't going to be over by this Christmas or perhaps by another 5 to 10 Christmases :-( At least this though is a gateway to ongoing maintenance or more radical treatment that is why it is so important.

Checked my BP - strewth it is still high but I am in a better frame of mind myself.

Here we go

Just over an hour before we leave to go the Hospital - I am beginning to feel it already - trying to control things this time with some breathing (not that I don't breathe you understand) and just trying to relax - I might take my music along with me this time again - not sure if that helped or hindered to be honest.

I've tried all the mind tricks "what's the worst thing that can happen?" all that stuff and honestly you can't rationalise with me at times like this.

Today is the day (again)

Assessment two (sounds like an Arnie Film). Judgement Day II - but I doubt it.

I've decided that this morning I will take a few readings myself which are in the high normal range. I do feel apprehensive but I don't think that I will get in to an argument about things this time. I'll see what they decide to do with me, given that it is only three weeks tomorrow that the anniversary of the last assessment. If it is the same person it will be interesting as they were really concerned about my BP.

A couple of hours to go yet.

How much are you getting

At the moment I am guessing that I am providing you with 90 to 95% of what I am going through. I'm not sure if I should give the last 5 to 10% yet.

I tone down the language that I sometimes think in - I'm allowed to swear in my mind I think :-) I try and describe things differently rather than use too much base language for that. The blog is still semi anonymous. I will open it up a bit as things go on.

Like most things you area allowed in, but only so far.

At the moment what does it all mean?

It is difficult to sum up quite what I am thinking at the moment. I want to get the assessment over and done with and I want to get this operation sorted so that I know one way or the other what comes next. It gets one major thing sorted in my life and it should allow some sort of plan to emerge about what to do next. I'm not helping myself and it frustrates and upsets me deeply.

The delays and my own stress levels aren't helping me and I get really stressed out when I should perhaps be relaxing and let this stuff happen. It doesn't help me to help myself which is unusual for me, I do want to help myself to get well again. Mind you, if you are built that way, you are built that way I suppose.

Then there's everything else - like work and the future to review. Just about everything is on ice at the moment. I can't seem to move forward until this is (not resolved - a different word perhaps) understood or comprehended. At that point, what ever the prognosis, I can make a judgement call on what needs to be done short and long term.

Then there are lots of little things that start to mount up and there is a level of stress and commitment required on things that you don't want to do or have to put off and yet I feel bad about doing that. I am putting a lot of things off on the basis that once I know my fate I can decide what to do then. If it keeps going backwards then the list of things to do just keeps getting larger. Of course, perhaps I ought to do them anyway. The uncertainty of what will be found means that I have only planned a few things this year. Normaly my diary would be a lot fuller.

On other levels I am feeling fitter and losing weight, eating properly and taking care of myself better than I ever did and the question is - why the hell didn't I do these things earlier in life - the answer is - of course - I was never ill before now. I also thought I was fit :-)

So at the moment I've got the immediacy of the assessment and the operation and at the same time keeping fit and continuing to improve my health. In the medium term I need to know what the next steps are going to be, a rough idea of how my future is going to shape up and some grown up discussions about what I need to do, what I want to do and what I will do.

The are levels of things that I need to or have to do. Family, House, Education, food, money etc. The basics.

There is on balance with that, what I want to do. I've had the big wake up call, there are things that are in the back of my mind that are saying these are the things you need to do before you die (sort of).

There is the what I will do as there just has to be a trade off between what I have to do and what I want to do.

In a way I am looking forward to being in a position to focus properly on those questions. I've said and hinted before that there will be casualties in the outcome of that. Somewhere along the line perhaps I need to be extremely selfish or perhaps I need to drop some activity or some other action that will arise out of this. I think I have to balance that when I come to it but be realistic now that it may happen that someone, some people or just I gets hurt by the decisions I will have to make.

Turbulent times at the moment, no job, possibly no chance of getting one for a few months until this next lot of stuff settles down, possible other medical problems on the horizon or maybe not, further treatment, realisation of the severity of the situation and actions arising. As a Project Manager I should be "revelling in it" - but dealing with people is not the same as dealing with yourself. I'd tell myself to "pull myself together" but I know that things are neither simple nor are there any easy or indeed right answers at the moment.

The conundrum that is cancer. It works on many levels, getting better or getting things under control is just a start. Trying to get on with the rest of your life is a juggling act that I have yet to master.

Be assured, I will master it, it is just how long I take to do it that cannot be assessed.

Here I go again

Back to the Hospital tomorrow for an assessment. I thought I was doing alright but I'm starting to get slightly wound up about it. I'm hoping for things to be not so bad - I've supposedly lost a fair bit of weight, lowered my blood pressure and calmed down a bit I think.

We will just have to see what tomorrow brings I suppose? They can always call it off again if they want to. Not sure the consultant would be over pleased about it though.

Weigh Hey!

Excellent - another 2 Kgs off this week, down below "obese" category and on the way down which is great news. I'm well pleased with that sort of loss that is close to 2 bags of sugar gone but I was feeling a lot better towards the end of the week (excluding Friday of course).

I can actually feel the loss so I knew before I got on the scales this morning. Now I need to keep up the diet and to keep up the exercises too.

Back in my Office

Pleased to say. The party I believe, given by the slow way everyone is getting up this morning must have been successful. It looked like a bomb had gone off in the dining room and kitchen obviously because young people are so uncoordinated that they cannot keep food on their plates.

I upped the exercises to 40 minutes this morning - also pleased to have recorded the lowest blood pressure reading I've seen as well.

I have the assessment tomorrow and so I am hoping that I can keep relatively calm to keep the BP within the bounds of normality.

Shutting Down for a short while

Whilst they use my office for one of the party goers to stay over - nice of them to tell me after it had all been arranged by them!

Logging off but back tomorrow

The Waft of Party Food

All I can smell are sausages and the like being prepared in the Kitchen - the little apprentice human beings have offered me a couple to try but so far I have resisted. I have escaped up to the office but will now go and lock myself tortoise like into the back room.

Thanks

So I just got an e-mail.

"DaDaer sir
we got your name and your addres true internet that you are one of exporter of used shoes an clothes and we are one of lmporter in our local market we only been buying from uk companys.pls can we know the wey you uperate both your price even am now in uk"

Nasty stutter at the start?

So I've suggested that they write to me as they have my "addres" - whatever that may be :-)

Party Tonight

Not mine - my little baby is 17 soon so she and her apprentice human being friends are around tonight banishing me to the back room and perhaps the kitchen.

All is looking set fair, cakes is made, food is beginning to be cooked and prepared and all valuables and things that could be knocked over are moved, next door neighbours have been warned to expect a bit of noise and to complain if it gets too bad. perhaps I should have paid for them to go out for the night?

More worrying than having a party is that Driving Lessons also start in a day or so too. Not for me for her!

Cheered Myself up

I just cooked a really neat soup for lunch using Water Cress. Really easy to make although trying to find Water Cress is a nightmare. You can get it in packets but not loose anymore.

I beginning to sound like my parents reminiscing about getting stuff in newspaper - although I remember going to the shops for my Mum with a bag and getting x Lbs of potatoes tipped into the shopping bag. If the Greengrocer missold anything to my brother or me - mum would be around there and give him what for as I remember. We had the treat then on spending a few pence on sweets - much to the delight of my Dentist I imagine.

Anyway get down to Waitrose and pick up a copy of the recipe or perhaps from their web site. It was really good.

Additionally, the latest from the kitchen is that bread consumption has gone down 75% as had cheese too. We have had to throw out some Ham we bought last week as it is past it's use by date. Also we are having to replenish the fruit bowl three times a week now.

As you can probably tell I am feeling 100% better than I was earlier - I have no idea why wearing a stupid piece of kit should have made me feel as ill as I did? Now I feel fine - stupid, really stupid.

Bloody Typical

I just ran a set of tests on my BP monitor here. I'd verified that it was reasonably accurate yesterday as it was within a few percent of the larger BP monitor.

Back to normal readings. Not happy about that of course. I'm also feeling a hell of a lot better, less tight across the chest and easing down.

I think I may have to take up tai chi or some such relaxation stuff to see if that might work, I don't want to take tablets if I can help it. I might have a word with a friend of mine who is a hypnotherapist and see if he can help.

I can go and stand in front of hundreds of people and talk, I do loads of things confidently but get me within a 100 metres of a Hospital or the GP and my body goes into nervous meltdown.

The only thing that comes near this are those famous words

"Dad, can I have....?"

Over for now

I really found that an unpleasant experience - I know it was only a blood pressure monitor but, I have been wound up about wearing it and I can still feel how stressed I am even though I have just taken it off. Sounds stupid I know but whether it was the spying nature of it or the uncomfortable nature of it I don't know.

I'm sure it didn't help knowing I am back in on Monday for pre-assessment. It's all a bit deja vu - I just hope I can keep my BP down well enough then. Knowing what happened last time isn't actually going to help either. Actualy got to wander over there now and give this back.

I lose all my common sense and upbeat outlook when I go to these places. It's just the way I am.

Not such a good day

I can't stand this thing attached to me, it keeps going off and squeezes really tight and I might as well throw my BP Monitor in the bin reading the measurements this one is recording.

I really haven't felt well all day either - no doubt that is stress too and getting the letter and having to go through assessment again on Monday. At least it is an early operation on the 11th by the looks of things as I'll have to be there at 7:45.

I'll see what the night brings apparently this little baby only acts like a Boa Constrictor every hour instead of half hour at night. Thoughtfully it bleeps to let you know what it is about to do and then pumps up and does it stuff. I can imagine sleeping through it's asthmatic ritual will wake me up too.

I just checked my own BP monitor - it too is reading high. I wouldn't mind - I'm normally 20 or 30 points lower than this. Damn!

I Guessed that would have to happen

Got the letter to go in for pre-assessment on Monday. Do you think that they'll have the results back from the tests by then?

So am I a little stressed? You bet. I am going to go and just sit down for a short while and take things easy and then I can wander over to the Hospital a little later.

You couldn't invent timing like this - if it were in a film script it would be unbelievable.

30 minutes later

Having given the cross trainer a thrashing I'm feeling a bit better now and not quite so tight. I'll take a cool down, have a shower and very slowly get on with my day. It is pretty clear, I have to pop to the Post Office either on the way there or on the way back - it depends what the queue is like. I can then wander up to the Hospital at a slower rate than I did last time so that I arrive there relaxed rather than half out of breath, heart pounding and BP up.

The rest of the day is taking it easy really I have a couple of minor chores on the PC to sort out but other than that easy is the name of the game.

Spent a horrible night

Awake most of the time, dreaming or recollecting going into Hospital, wheeled down to theatre and reliving the yuk bits and there was no way I could get that out of my mind. I tried the old listen to music trick - nothing and I finally got to sleep in the early hours.

Perhaps it was posting the BCG stuff yesterday or finally realising how serious things are. I don't think I have been kidding myself but then again, perhaps that is how I am getting through it like I am.

I certainly don't need to be wound up and stressed out going to have my blood pressure monitored now do I?

Right - this off my mind for a moment I shall go and do my exercises.

Getting Wired Up

Tomorrow - 11:30 - what kind of time of day is that? I suppose I could walk back from the Hospital past the pub but I'd better not :-)

I suppose it will prove one way or the other whether I've got blood in my alcohol stream or vice versa and indeed whether there is actually any blood at all - some have expressed the belief that it was anti freeze all along.

We will find out soon no doubt. Talking of which I haven't had the letter to go back in yet - might get it tomorrow.

It is annoying that by now I would almost have had my results if it hadn't been cancelled the first time.

The report was well worth reading too

This was the report and it's "sort of" OK - these are the sorts of things that are pretty good reading if you read it one way and not so good if you read it another way. May I suggest you read as I would in an optimistic fashion - thank you:


"Bacille Calmette-Guérin (BCG) is an effective conservative treatment for managing patients with Stage T1 high-grade bladder cancer, say investigators. In their study of 78 patients with the condition, who were initially treated by transuretheral resection (TUR), adjuvant BCG was effective in around two thirds of individuals.

"TUR alone is associated with a high rate of recurrence and progression to muscle invasion and is clearly not curative in 40% to 60% of patients," note David Margel (Rabin Medical Center, Petah Tiqwa, Israel) and colleagues."Early cystectomy, although offering the best chance of cure, would probably constitute overtreatment in many cases. Consequently, most urologists favor initial TUR of all visible tumor and adjuvant intravesical treatment.

"The researchers investigated the long-term outcome of patients with Stage T1 high-grade transitional cell carcinoma of the bladder who received TUR followed-by intravesicle BCG. Patients received initial 6 weekly instillations of BCG, with half of the patients receiving at least a further seven monthly instillations. Among the 78 patients treated, 34 (44%) were still alive after a median follow-up of 107 months (range 16 to 238 months).

Among the 44 patients who died, 32 died from causes other than bladder cancer. A total of 27 (35%) patients experienced a recurrence of their condition. Most recurrences occurred in the first year after treatment, at 55%. Progression was seen in 14 (18%) patients, 12 of whom died from their disease. The team reports in the journal Urology that the overall 2-, 5-, and 10-year recurrence-free survival rates following treatment were 76%, 72%, and 62%, respectively.

The corresponding rates for progression-free survival were 92%, 82%, and 80%.The disease-free survival rates were 99% at 2 years, 90% at 5 years, and 85% at 10 years."BCG is an effective conservative treatment of patients with Stage T1 high-grade bladder cancer," the researchers conclude.

They add: "More than one half the recurrences appeared within the first year, but a small risk remains throughout the patient's life."Progression during follow-up appears to carry a high risk of cancer-specific death."


Free abstract: http://dmail.organon.com/cgi-bin2/DM/y/nhga0MyNmI0MUM0Bbu10Eg


MedWire: Urology

When you go for BCG

This is what I try not to look at. This picture just arrived with some more information on BCG. Actually there is a bit more here than I have and the syringe on this one looks wrong as the one I have is much bigger than that and all the valves and bits aren't on mine. But anyway, as a guide, now can you see why my blood pressure would go through the roof and equally why I don't look and take a stress ball in with me? Thought you would :-)

Exercises Back on

I got back to exercising this morning and the rashes on my legs have faded right down so not sure what all that was about but at least I can get back to keeping fit and dropping the weight off.

I'm still doing the 30 minutes with 3 x 10 minute programmes but I have upped the programme to do 1 easy one followed by two harder ones with far more resistance on them. Once I get to the point when they become easy I will switch to a couple of the really hard programs - the one that looks like the ascent of Everest was particularly difficult I remember. So I will try and get to 30 minutes on the harder programmes and then after that perhaps increase the time.

Despite now having the new date

and feeling a little uneasy about it - because after all you do start to build yourself up to these sorts of things - I don't feel too bad, I'm still feeling as good as I did earlier this week and pretty much full of vim and vigour (there's a phrase you don't hear that much these days).

I am also hoping that whilst I might be heavier than I was last year I am actually a lot fitter and so I hope that it will help me to recover quickly. I think that I will have the same ground rules as last time which include not driving for a week. I'll probably not be allowed to exercise either in that case. It seems perverse that to check that I am OK will mean that I'll be bleeding again and need to take it easy.

Safety Valve

I think I blew that last night a bit. I was a bit more extrovert than normal and a little louder too.

The pressures of the past few weeks and the delays, more tests, life style changes and then getting the news to go in in less than two weeks meaning the delay probably wasn't necessary all add to the stress of living with something like Cancer.

It really is difficult not to react like this occasionally - sometimes you just want to scream but of course you don't. The trouble with bottling it up is that you lash out somewhere else and most often inappropriately. Alternatively you get slightly loose like last night.

Update on Pottassium Sorbate

It looks OK then - there is an article about it here

Potassium Sorbate

For goodness sake what is that? I bought myself some dried figs and they have Potassium Sorbate in them. Now I know Potassium is good for me but hold on a minute, isn't sorbate something to do with salt?

I am going to spend a few hours tomorrow working out what this is before I dare eat it. I actually think it is OK for me but I need to make cure that I don't eat something that externally appears good for me (Dried Green Figs) only to find out that I am whacking up my salt intake in so doing!

It is so difficult working out what is and is not good to eat.

Interesting Evening

I ran a networking evening and it was well attended but I felt that I didn't circulate as well as I could have and sort of left four groups of people networking together when perhaps, as organiser, I should have made them mingle? I'm not sure about that and perhaps I ought to let serendipity take a hand rather than try and make things happen?

The strangest thing was that those who should have turned up and were down as certainties didn't and those who said they might do actually did turn up!

How strange.

Anyway - I did enjoy the evening even if I was getting a little bit more outrageous than normal towards the end! I think as it is my last evening of drinking for a while - perhaps I got too advanced even for myself!

I know it's..

Anger and "I told you so" that is going through my mind right now.

All this bloody hassle and I told them that this was what it was. We didn't need to go through all of this again as it was in my notes. It just makes you furious doesn't it?

Oh well, calm down - I am not doing my blood pressure any good my getting angry about it.

How Silly

To get wound up over this. I'm thinking I need "any excuse" these days to be gloomy - or put upon. It is easy to get into that frame of mind "It always happens to me" and I'm going to have to live with this (I hope) for a very long time so I'd just better get used to it I suppose. I'll be doing the paranoia and conspiracy theory bit next!

On the up side - the job market seems to be good, I'm getting some good quality local work posted to my inbox and I've actually decided today to go for a few of them and get back into interview practice and into working for a living mode. I'm banking on everything being clear - how else can I picture it? If that is the case and I go in on the 11th then I will come out on the 12th and have a few days off - then I would have 2 to 3 weeks before going in and hearing the news and then perhaps a week after that a three week course of BCG. Which would take me to about the end of May (Monaco Grand Prix weekend) and that would mean a November 6 month cysto and another 3 BCGs. Believe it or not this is positive thinking. What that would mean is that every May and November from then onwards I'd have a cysto and a course of BCG up to a certain number of years then I think the period between changes to 9 months, 12 months etc.

All on Edge Again Now

Blast it, I am all wound up again following this news. It's all back to slowly psyching myself up for the operation - I suppose they will want another assessment (Oh gee wont that be fun).

That has really put a wobble into my day and made me feel all sort of mildly stressy! Typical.

Breaking News

My Consultant is back off Holiday. Ahem...... 11th April looks to be the date they want me in. Anesthetist will come and talk to me or review my notes.

Lucky that my Blood Pressure readings will be available to them after this weekend then isn't it?

Apparently a letter is in the post giving me further details. It is lucky that I didn't book to go away for Easter I suppose.

I suppose the really good thing is that my Blood Pressure readings are still coming down - this morning they have all been way under where they have been. I have to say that I am still a little shocked at the phone call I've just had and you have to believe this - my Blood Pressure has just gone back up again :-) The merest thought of Hospital did that!

This is a lot earlier than I thought I'd get seen and it doesn't clash with anything unless they have to operate in which case it might affect something I was planning on doing later in early May.

Walked there and back

It is a fair distance to the supermarket and back. A bit of a shock, I bought myself loads of fruit, some veg, some low fat cheese and a pint of milk and no change out of a £20 note! That is a lot of money for stuff that is good for you. I could have got 20 MacDonald's for that.... Well, er, maybe not. I remember doing some work at MacDonald's, Wendy and Wimpy and my clothes stunk of burger grease. Yuk!

What on earth is that?

I have rashes around my ankles and on the back of my calf muscles. I decided not to exercise this morning but have washed the areas and put some cream on - please don't tell me I have become allergic to beer? How bad would that be :-)

It is probably something quite simple. So to get some form of exercise in I am going to walk to the supermarket and by myself some fruit. I never thought I'd hear myself say that!

It's Amazing

How nostalgic nostalgia can be?

Tonight I was out with a bunch of old school mates and we were in a pub that - collectively - we hadn't been in for 26 years. In fact it was a Stag night all those years ago and all the old stories came tumbling out. Isn't it amazing how one story trips another and things locked away suddenly come to the fore and you just laugh like drains at the absolute foolishness of youth? OK maybe not then :-) We had a great time and suddenly things that were forgotten were surfaced and they were so much funnier now than they were then. If I tell you that we were talking here about spectacles and condoms, my white silk tie stuffed in an old brown ale bottle, stolen plant pots and short cuts, cross country in motor cars that weren't designed for that you may perhaps get the picture. The bad part is that until some of these subjects were actually mentioned, many of us had hidden these memories for 25+ years!!! Whoops..

We had a lovely evening and our once a month "lads night out" is so much pleasure that it would be a shame not to continue it.

There is something very therapeutic about being out with guys you have known since pre-puberty and I always marvel that we have stayed friends (through thick and thin) from school right up to today. I am really blessed with such a nice bunch of friends. As I approach the 50 year landmark I doubt many people can count on two hands the people they went to school with as best buddies?