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