Monday, January 12, 2009

24 Hours later

I still feel very ill, I got up about 2 hours ago and decided to come downstairs and I suppose I have been in bed about 36 hours or so. The cough is horrible and the deafness is profound. I hope that it isn't infection but viral and "keep taking the tablets". Some say that not hearing the wife is a good thing but to be this deaf is not at all nice, I can only just about hear and the TV is playing rally loud. Thank goodness for sub titles!

So I didn't go to the Hospital and didn't get my results and they will reschedule my appointment. I'm a tiny bit disappointed but I knew I was going out on a limb for Saturday. I think it was a good day out, a good meeting and that the members and visitors all seemed to enjoy themselves.

I'm paying the price for it now.

Sunday, January 11, 2009

Surfaced for a few minutes

I have been in bed and not at all well. I guess I HAD to pay for yesterday's meeting. I had to be there and loaded myself up with drugs and just bludgeoned my way through it. Of course, that strategy meant that when I got home I went to sleep and didn't wake for 12 hours. When I did, I was looked at and told you aren't getting up today and have been asleep since then as well. The cold is pretty horrible and my ears are still blocked and I can't hear much.

It looks as if, if I can't shake this, I won't be going to the Hospital tomorrow for my appointment. It would be churlish for me to take this into the Hospital or for me to pick up something whilst I am still so ill.

I've just had a bowl of soup and will take my self back to bed again to see if I can shake this off.

Saturday, January 10, 2009

Its over

It went really well so everyone told me. I could hardly hear a thing and I am concerned that my ear has some serious damage to it as I detected blood leaking from it this evening. Will my troubles never just stop.

It appears you get to 50 years old and your body just goes into revolt and body melt down! At least things are better than yesterday and I have had a couple of beers this evening - spaced out as I knew I had my paracetamol and ibuprofen as well earlier and really shouldn't be mixing it up but, hey ho, if I sleep tonight, perhaps I'll feel better in the morning.

It seemed to go very well but I was very concerned that is was a one sided things as I appeared to be doing just about everything. Someone whacked me with a chair accidentally and my foot feels really sore and badly bruised.

It is enough to induce paranoia.

Anyway, much happier than I was last night. Feel a long night coming on though but hope that everything settles down. Lots of decisions to be made and things to consider.

Here Goes

Well - I have had a shower - quite civilising I always find and found that my left ear was filled with some clag that I have removed - I am still getting tinnitus but I think that I can get over these but not sure what sort of mess I will be in when I get home.

It isn't every year you get to dedicate a banner - the last time was in 1936 and so working on that it would be about 70 years away!!! So I don't want to miss it.

Off in 40 minutes and go and get the place ready. It gives me 3 hours to sort it out.

It got worse

Just after I wrote the blog - the lamp in the toilet had gone and I couldn't work out how to change it such was the headache and pressure build up. My ear was in bad order - I had trouble with my right ear when I was a kid but that one doesn't get all the grief when I get a cold it is the left. This time the pressure kept building and then I could hear all sorts of bubbling, popping and creaking sounds followed by a large crash and bang as whatever it was gave way and my ear started leaking clear liquid and the tinnitus was the worst bit.

I can now hear in both ears my heart beat but at least the high pitched screeching that was going on had stopped. After an hour of agony, I managed to get everything under control, including myself, with some deep breathing and some calm thoughts. Then it really got nasty about 2 pm and luckily Mrs. F. said to try some Nurofen. I didn't want to take anything having had 4 - the maximum number of cold sachets the day before.

Anyway, a heat pack on my ear and neck and 2 Ibuprofen sorted things out and I eventually got some fitful sleep. I got up at 09:30 and had some toast, I have decided to do the Paracetamol and Ibuprofen mixture to see if I can sort this out. I believe (bit of late night research) that the decongestion sachets actually block the tubes up to your ear. If that is so, no wonder I have had problems - I always do.

So I have just taken a phone call about this afternoon and I do hope that I will b in a fit state to go. I was worried last night as I thought it might have been an ear infection yet I think it must be some sort of congestion related thing as there is no dizziness etc.

Someone said "you're going through the wars at the moment". He isn't wrong there. It's like Arnie has come back and given me "Payback".

"I'll be back!"

Started off OK

Now it is a night of utter frustration. I don't know what to do with myself. I've had a few hours sleep, I've had all the recommended medicine I should have to day and I am up with ear ache, headache, coughing and on and off congestion plus the hot and cold sweats. To cap it all the light bulb in the bathroom just blew and all of a sudden, I can't get to sleep, I'm anxious and just don't know what to do with myself.

I've got the hot flushes coming again now, I will go back downstairs where it is cooler for a while and see if I can relief the pressure.

I haven't felt like this for so long and it really isn't at all pleasant. I know that some of it is nerves for tomorrow but not much. I just need to go and get comfortable and try and get some rest. The trouble with this is the more that you worry about it the worse it gets.

Friday, January 09, 2009

That's Nice

The University have offered to allow me a 3 week gap to see if I can catch up with my studies. I'll think about that over the weekend. If I can just shake off this cold which has moved to the one deaf ear, hacking cough and sniffy nose stage now, I should be able to get onto that I hope.

What a nuisance, the pressure behind my ear is making it difficult to hear anything at all. I feel like a total wreck at the moment. I can hardly believe that I am like this. If anything I am worse now than I was at the start of the week :-) If I was a Horse, they'd have to shoot me!!

I've finished my preparation work for tomorrow now so I need to go and drug myself up and see if I can get rid of this cold as much as possible for tomorrow's meeting.

I hope all the effort will have been worthwhile. I am sure it will be.

Better but not much better

Now I've got the blocked nose and sore throat and headache from hell. Great :-) I've got lots of talking to do tomorrow in a large hall with about 100 people in it and it would be my luck that I'll have a voice of a shy 5 year old instead of one everyone can hear. Add to that I also have the sneezes - that took me by surprise as I was typing this too. I'm also a bit concerned about the throbbing around my bladder area - it could be palpitations - perhaps it is the bladder flexing to get rid of the other scabs. Whatever it is, it is noticeable and distracting too.

I've whacked some Vitamin C and I am having one of these Max Power Lemon Cold and Flu thingies with added honey. Sore Throat tablets and anything else to soothe my throat also being considered.

Another scab and bits came out this morning, this time more reasonably pea sized like normal.

Today, I'm on tenterhooks awaiting deliveries of toner for my laser printer, binding equipment for my brochures and working out all the other logistics for tomorrow. I'll need to ask the lads to move chairs and things around tomorrow (I must remember not to do that myself).

Damn I feel knocked out and just not right at all. I'm sure it will all be fine tomorrow, it always is, but I could have done without the added problems too.

Thursday, January 08, 2009

OMG Ooooooooo YUK!

Oh boy - could it get any worse. Went to the loo about 8 pm and had a long load of debris and blood and bits firing out and thought Oh no! It was horrible and of course a little blood goes a long way when watered down but this was loads of bits and pieces. I thought someone had been up with a Chimney Sweep's broom :-)

About 45 minutes later I went and I kid you not, the scab must have been the size of Wembley Stadium. Oh alright then, a bit smaller than that about the size of a 10p piece (size of a Dollar US) I'm guessing, no more blood but hell, if they cut bits that large into me no wonder I feel beaten up.

I've been on the drugs all day for colds and Flu and back into a warm bed in a moment to see if I can sweat the rest out. Sore throat, sneezes and coughs - I'm being paid back for the past couple of years of being cold free I guess :-)

I can't believe this - I'm so unfit at the moment.

Everything I've touched today has turned to poo

I have had "one of those days" today. The Printer gave out, suddenly I'm expected to sort out the Table Plan for Saturday - as if I haven't got enough to do on the day. In addition to that, they can't find my next day delivery that should have been here on Tuesday and can't even tell me where it is until tomorrow which will be too late by then.

I then found that my Laptop hard drive (I bought a new one for it) isn't compatible and then I knocked my coffee all over my desk and the floor of my office!!

On top of that I sent a note quitting the University Course I was doing as there was no way I was going to manage to finish that with all the impromptu stuff going on as well.

I'm just mighty hacked off with everything at the moment.

What else could possibly go wrong

Well, how about my laser printer for one. It gave up the ghost about 10 minutes ago just as I was trying to complete a run of brochures. That has left me about 30 short of the target number. It is just the cartridge but what a nuisance.

I'm feeling - well, to put not so fine a turn on it - sweaty - I've been sweating this cold/Flu, whatever, out these past few nights and I am now also steaming away inside my jumper and tee shirt. Hopefully I'll get rid of the damn cold thing as I want to be fit for this weekend.

Wednesday, January 07, 2009

End of a Day I'd rather forget

Mind you I did get stacks of things done but I still feel like poo and I have this irritating cough that sends a shudder through my chest and stomach and groin which is really uncomfortable.

I need to see where I am with things tomorrow morning if I can realistically get my work done by Friday night I will try but I am losing hope of ever catching up now. There is just so much to do that I am not certain I can fit it all in.

I also need to work out what I am going to say in my talk on Saturday night - I haven't even written that yet!! I need to have a flexible talk to do anything from 5 to 15 minutes. It is all again a bit of a rush and didn't need to be as I was going to do this last May and didn't actually do it until last week!!

Back to clear again

Back to clear this time which is a relief - I guessed it wasn't a problem but you never know with these things.

I have dosed myself up with cold and flu remedies and will be taking it very easy again tonight. I was going to go off to the Jazz night but couldn't face the cold or the possibility of making this cold any worse than it already is.

I've managed to finish off most of the brochures for the weekend. I am getting a final proof read done and can then assemble them.

Nothing like

A stream of bloody urine to grab your attention is there???

I'm guessing all this coughing and racking my body has dislodged one of the scabs. It wasn't just a scab it was a full on flow for a short while and then afterwards went clear.

Shudder!!! It brings back many worrying memories but I'm certain this is OK and it just means all the scabs are coming away now. I just need to make sure I don't do anything silly whilst that happens.

What on earth was that?

I went out with two friends yesterday to have a few beers and lunch and to edit and review the documents I need to print off for Saturday.

I was really surprised to find that when I got home, I sat down and went into a Flu like series of shivering, hot and cold, headache, legs like lead, sore throat. Where on earth did that come from. I've dosed myself up with drugs and gone to bed and sweated most of it out during a very uncomfortable night's sleep. I still have some of the symptoms in a minor way but it did take me by surprise.

I was going to venture out tonight but it is so cold and I don't want this cold to get worse. What a nuisance.

I think I have also resigned myself to having to give up my course. I just don't have the time to catch up and I haven't been able to give it the concentration and attention that I should do. I will discuss that later this afternoon and probably give that up. It isn't what I wanted but I have been so low with this set of tests and over Christmas and the New Year that I would need to make a supreme effort to catch up and I just don't feel up to it.

Tuesday, January 06, 2009

Changed Date

I thought so. I sent off an e-mail querying the date for the Out Patients Appointment as late February really did seem too far away.

New appointment is next Monday (will I ever get back to work?) late morning. So at least by this time next week I will know which way the land lies and what the next steps are going to be.

A bit of trepidation around that meeting but maybe I'll find out a bit more about what went on and of course, the answer to the most important question of all - is it clear?

Well you certainly got my attention


Steve K and I have mentioned that awful moment you do your first Pee after biopsies or Peek and Poke and it is as if you are p1ssing Razor Blades or fire.

Well in this case I believe they took this a little too far. We used to say "only in America", but it can now also apply to Australia :-) Enjoy....

Monday, January 05, 2009

Ventured Out

It is very slippery out on the roads and pavements and a couple of friends very kindly picked my up and dropped me back from the Lodge of Instruction meeting tonight. I have to say that I was really worried walking on the slippery surfaces. However, I managed OK and it was good to get out. I felt a bit cumbersome having to keep getting in and out of my Chair and walking around but I will be alright by Saturday. I need to set myself that target at least!.

I broke the back of one of the documents today and hope to complete the rest tomorrow. I still have lots of little bits to do but must get on with my course work as well. I feel that my time management skills really will come into play tomorrow! They need to.

Oh nuts

Nothing like giving yourself a bit of pressure is there? I just rechecked my assignment dates and they aren't the 15th January when I thought they were they are this Friday - the 9th. GULP. Guess who hasn't even started doing the lesson let alone the assignment.

Damn. I'd better get my arse in gear for that.

On a brighter note, thank goodness I didn't go for today to have the Operation. Knowing what I know now I'd have been lucky to have made it for this weekend's big show. Mind you I might have got my assignment done on time.

No need to panic quite yet - tomorrow morning will do for that :-)

In a Way

Thank goodness I decided not to go to work this morning. We have a thin layer of snow and ice and one slip and I'd no doubt have felt that all the way. I'm still not right. Funnily enough at least my mind is clearer than it has been for ages and I don't have that "heavy head" any longer. My stomach still feels like it needs a few weeks toning to get back to normal. I cannot fit into my ordinary trousers as they feel too tight and that's nothing to do with Christmas either as I haven't eaten huge quantities of food.

I just hope that I can get fit quickly enough to get back to work and to get Saturday out of the way. Also that I can sit at my desk for a little longer than I can now. I can do about 1 1/2 hours at a time now but even then that is pushing it.

Sunday, January 04, 2009

Getting Somewhere Now

Thank goodness that I felt good enough and I actually got on and did some work today. A good run at this tomorrow and I'll be happy as I might get to knock this out in time for the weekend. I need to produce about 100 booklets of about 20 pages each.

I also need to do another booklet which is far easier as it is an A4 folded in half, again about 100 of those.

So I'm pleased with the progress and it has been good to sit down and concentrate on just getting this sorted out.

I've passed a few more scabs and bits tonight and so at least the inside of my much beaten up bladder must be getting better and back to what it considers to be normal.

I am beginning to feel better and hope that a few more days convalescing will have me sorted out and to get me back to some semblance of normality.

Better but some pay back

I managed to go to the party and survive although standing on my feet for the best part of 4 hours has played havoc with my back and so I am resting in my chair with my feet up but also with the laptop so that I can continue to work. Additionally I've started passing the odd scab when going to the toilet. That is to be expected at about two weeks and isn't a cause for alarm although it doesn't sound or is, in fact, pleasant. It is a good thing in a way as I can gauge that I am getting better and can start to do more active things without the worry of starting to bleed again.

At least today I have made a decision not to go to work tomorrow and I feel for the rest of the week. If I am honest with myself, I am not up to it and I'd rather sort this out now than go to work and set myself back as I have managed to do in the past.

I've got so much of a backlog of work built up that I must tackle this starting today and somehow I need to work out a way of getting it all done by the end of the week. I like a challenge - obviously...

Saturday, January 03, 2009

Living Beyond Cancer

This is a good UK resource but I reckon as applicable as anywhere else. Interesting that Neil, aged 51, same age as me, felt victimised in his workplace. I felt that people took a very different view of me after diagnosis. Click on the image to go to the site.

About Time Too

At last someone is doing something about the other side of cancer not just the treatment.

http://news.bbc.co.uk/1/hi/health/7752247.stm

Rip Van Winkle

Yes - another 12 hours sleeping and I generally have another 1 to 2 hours in the afternoon too. It is getting kind of strange that I should be this knocked out but then again, perhaps the body is repairing itself. It makes you wonder what on earth they did to me.

It is a friend's 50th party today so I was left to cook some of the cocktail sausages this morning. That surprisingly easy task has left me tired too. What a wimp :-)

At least I don't have all the heavy headed cold symptoms anymore to contend with. Mind you, can I cope with a night out again?

I'm also seriously toying with not going back to work on Monday - I really cannot see myself being ready for that by then. I cannot sit at my desk for longer than about an hour at the moment - what chance of a full day at work?

What the hell did they do to me?

I have to ask quite what they did to me this time. I know they've told me before that as these are biopsies they tend to do a belt and braces approach to the samples and dig far deeper than they would if scraping off a layer or two of cells when doing a TURBT.

But hey guys, I shouldn't be feeling this beaten up almost 2 weeks on? Whether they cut deep, bent me into shapes that aren't normal, strapped me upside down or whacked me with a massive General Anaesthetic only they will ever know I suppose.

I can't believe how lethargic I am, how weak and just washed out.

There is another explanation someone floated. It's like the end of a long race, like a Marathon and you've crossed the line and now you are exhausted and catching your breath. That is another explanation that is plausible. I can see that when you get to the end (or supposed end) of something like this you let your guard down and succumb to fatigue or something like it. It's almost like that - utterly knackered :-)

Anyway - I look back to my last few weeks of posts and find that I am bleating on about how rubbish I feel but other people are far worse off than me. I need to get a grip on this - I'm beginning to turn into a whinger and I don't like that.

Friday, January 02, 2009

Doesn't seem to be getting any more predictable

I again slept for 12 hours or more. I suppose my body needs that to repair and I still feel out of salts and a bit lethargic. I can't believe that my shoulder and the top of my hand still ache as much as they do even 11 days on.

I got my letter from the Hospital today as well. Now here is an even more bizarre thing. I was told that they'd see me in 2 weeks or so given the holidays, so Mid January. Now the 19th February 2009 isn't mid January - in fact it is almost 2 months from when I was discharged. So I've written an e-mail to the Hospital just checking out whether they really meant that or whether they meant the 19th January. It can be read in a good way if it is the 19th February if you think about it. So I'll see what they come back with.

In the meantime I am trying to get myself motivated to get going today and once again I find that I really don't feel up to it.

Hey ho... Maybe later - I work better under pressure :-)

Thursday, January 01, 2009

Curiouser and curiouser cried Alice

It's late in the evening, I've just had a lovely call with my relatives in New Zealand which was totally out of the blue.

But what is very strange indeed is that now, I feel fine, my head has cleared, I can breathe normally and I feel much lighter and ready to go and do something tomorrow. How quickly things swing around. It is a bit strange this coming and going of symptoms.

I'll see how I am tomorrow - I do hope that I'll be able to crack on and do some work.

Strange

I had enough medication to make it to see in the New Year but went straight to bed after watching the London fireworks on TV. I slept for 12 hours. I felt better when I got up and I have been taking it easy today. I've had a little bit more medication.

It felt like a small bit of Flu but I reckon my immune system beat it overnight. The problem is that it is another day that I haven't been able to do anything constructive. I've the odd cough and I feel a bit weak - I certainly don't feel up to getting on with some brain work - I can't concentrate long enough. I am just sat here tired and whacked out.

Wednesday, December 31, 2008

Feel Like Poo

I have had a really bad morning and this afternoon have had to admit defeat and just sit in a darkened room. It felt fine this morning and this afternoon I feel all Flu like again but not enough to go to bed with it but certainly enough to take some medication and have a few hours sleep in my chair.

I wonder if my Immune system is fighting off a bout of Flu or a cold as it isn't coming out like a normal cold or Flu. Slight sore throat, slight cough and so on. Weird.

Tuesday, December 30, 2008

Things Have to Change

I looked back at this time last year and the year before to see how I was feeling and actually the same theme runs throughout. This time last year I at least acknowledged that I was clear and about to have another lot of BCG with a biopsy operation in April. The year before, I completed my first lot of treatment and still had CIS as far as I knew then - in fact it was downgraded to precancerous (ie not cancer but deformed cells).

I'm surprised that things are similar to last year and in some way to the year before in terms of outlook and wanting to move on but being unable to decide what moving on actually means. Each year has seen great strides forward and as far as I know that remains true today, if the biopsies are clear then I have been clear for over one year and in reality more like 18 months as I didn't have cancerous cells in April 2007 either. This is a massive positive - I will wait until I am told officially but unofficially (and they haven't been wrong so far) an all clear does make a big difference going forward. Will it be enough to make or even know what changes I think I need to put in place? I suppose I'll need to tackle that in the New Year.

I've been thinking a lot about the next steps and there will be a blog about it when I have completed it. I find it the most difficult thing but perhaps it is the most important too.

For example I am trying to address:
  • What do you do when you get your life back?
  • Where do you go from here?
  • How do you live with the uncertainty that it may come back and you'll have to go through it all again?
  • Do you HAVE to make a difference or can you just go back to normal?

Juggling with the various scenarios "does my head in" and so I am spending a fair bit of time trying to rationalise it out. Everything is up for review and options need to be worked through - hence it will take me a while to work through it and eventually blog about it.

Feel worse today than yesterday

I've been out a week and I feel worse now than at any time. I slept in until 11:30 when my Mum, bless her, phoned. I can't sit here much longer - I've done 30 minutes and the space inside my pelvis is re-arranging itself back to where everything should be in order before they stirred it around with a big stick. It is the strangest feeling, not uncomfortable or painful, just strange. Having said that, I still don't want to be sat at my PC all day - even though I should. I think I will go downstairs and use my laptop and try and do some studying or catching up with the history document I am writing.

The time compacts up doesn't it? I have no idea how I am going to fit all this lot in properly in the next week and a half. I'm sure I'll manage it somehow - I always do.

Monday, December 29, 2008

Only hurts when I cough

I have an occasional cough which really rattles me about and hurts my stomach and groin area. I'm guessing it is the general anaesthetic and my body getting rid of it - there is no cold to go with it. I've taken a few cough sweets which has temporarily relieved that. It has been a strange day as I've been trying to get up to speed with my work and yet I can't sit down at my desk for more than an hour or so and I managed to fall asleep again ts afternoon for a couple of hours even after having plenty of rest last night.

I want to be fit and back to normal now but the reality is, it is taking much longer than I remember or want it to be. It sort of backs up my view that two things happened here. My Consultant told me this (if clear) would be the last lot of treatment and, as I understand it, it should be the last set of biopsies taken as an operation under a general anaesthetic. She also told me that in taking biopsies, they go deeper into the Bladder Wall to make sure that things are clear. If they have thought these are going to be the last then I'm sure that they would have gone deep and also there is a possibility there are more than the standard number done if the apprentice had a go and did a partial job.

So whatever it is I've got to get on with it and recover, it is just annoying that I am not quite as well as I want to be and that I just cannot get on with stuff that needs to be completed.

I have so much to do and it is frustrating to find myself unable to do it. I know that I should be happy enough that I'm in a position to moan about it!

Bad Day

Obviously it is too early to sit at my office desk for as long as I did this morning. My stomach is hurting, as is my hand and also where that thing came out of my shoulder. In fact, today I've felt as bad as I did this time last week as I was coming around. My shoulder aches and my urethra - well it is probably trying to settle itself back into its normal position :-)

I fancied going out tonight but in reality I don't want to be sitting on plastic seats or walking around much as I feel worse today than I have all week. How bizarre - all catching up on me no doubt and payback isn't comfortable at all.

I'm trying to get back up to speed with my studies and the work I was doing before last week. The trouble with that is I still cannot concentrate for long - I get sleepy too and so as much as I'd like to do a blitz and catch up, I am forced to do lots of small sprints to try and get things done.

BCG Tolerance

Interesting thing, thinking back on it and chatting to the Registrar last week. He, and in fact many of the Registrars, Doctors and my own GP, were really interested in how I got on with the BCG. I was told early on that it would be pretty severe, not to travel, not to fly etc. I was doing long journeys at the time but was warned off.

I reckoned that they were challenging and when I did get a bad one - it really was bad but that was early on when I hadn't worked out what to do. Stupid me was trying to carry on working afterwards and the next day when I should have been lying down. I didn't prepare properly and so on. Once I worked that out things got easier. To anyone who doesn't have to have these it is without doubt the most horrendous sounding treatment to have, especially how they deliver it into your bladder but, as much as you can get used to it, you come to accept it. It is, after all, saving your life and so if you look at things that way then you can deal with it.

It is a strange thing to say that it was OK for me and some people really suffer with it and take a lower dose. I've had 24 all full doses but I'm comparatively young as most people get BC when they are much older and cannot tolerate the sorts of treatments we are talking about here.

I'm just surprised that the Doctors are surprised about the way I tolerate it. I suppose they are told by many patients how bad it is.

I've kept detailed notes about the BCG treatments and the side effects and in a way looking back on them, the first two sets of treatments that were actually killing off the cancer were pretty rough and not nice but I honestly expected that I'd be lying in a heap for days, vomiting and not being able to eat and a pile of much worse stuff, I didn't expect that I'd even be able to walk properly or be up and about but I was OK after 24 hours generally. When I hear of how Chemo and Radio work I tend to think I got away lightly. But again, if you haven't "HAD" to go through it, it still seems terrible.

I think I need to think more about this to do the subject justice. It is, in my opinion, a balance between what is acceptable in terms of cure to you. The IVU X-Ray really made me feel very ill indeed and yet these BCGs made me feel bad for a short time but just look at the results.

1 Week On

I'm still feeling it - gee they must have pushed and pulled me around a fair bit last time. It feels as if they gave me a TURBT not a Cystoscopy for biopsies.

I am definitely a lot more tender and can actually feel where they pulled me about. My stomach muscles and that whole area feel strained and tender. I'm not sure how much that is also me getting out and about and carrying on as normal as well of course but I think you tend to notice these things.

I've decided to see what I can do to get my computer sorted out today. I have set up my e-mail on another computer (I have - no sorry had 3 so 2 remain). I need to set up some of my other e-mail accounts and to do a review of what I think is missing. I do tend to back stuff up all over the place and to have files on more than one computer. I also tend to do 2 back ups of everything and so, in general terms I am OK but anything that I have done since the last back up will be lost for sure.

As usual there is the inconvenience of lost messages and files but all my photos and important stuff is always double backed up. I might take a friend's advice and do off line storage in the future.

Sunday, December 28, 2008

You tend to forget

How knocked about a General Anaesthetic makes you. I went out last night and again it was a nice do and lots of party food and beer etc. The trouble was I was really noticing it yesterday. The thumping pain on the back of my hand from where the Cannula was inserted and the bruise coming out now are reminders as is the very slight stinging whenever I go to the toilet.

Yes - you forget how knocked about you are until you start to get tired out and also how you sleep for longer and feel like sh1te. My throat is still a little sore and I am still making sure that I am drinking plenty of water. The problem with focusing on anything for a long period is also manifesting itself as I just cannot get the enthusiasm together to go and sort out my broken Laptop. I've tampered with it but it does look terminal to me as I cannot even get the hard drive to spin up!

Oh well - perhaps tomorrow and my head will be a bit clearer and I wont feel quite so exhausted.

Saturday, December 27, 2008

Tired

Dazed and Confused. I succumbed to a long lie in yesterday before finding the Laptop had expired. A bit of a blow is that as under normal circumstances I'd have backed it up recently. It is my main e-mail client so I've lost my e-mails for the past 2 months at least.

I'm doing OK with this ongoing stream of events. I find we have another one today to go to but that should be it until the 3rd January. At least I'll have an opportunity to sit down today and rest. I've been keeping going and awake somehow but when I do get home I crash out completely. I think we are out in the evening so at least I get most of the day to sort myself out.

When I reckoned that I couldn't see where they had shaved my leg, I now notice patches of hair gone from my left leg. This increases my assertion that someone other than my Consultant actually did the work on me as it has always been my right leg before. I also know that it was the same Theatre as all the rest I went to.

The back of my left hand is now beginning to ache and bruise up but everything else feels OK. My middle areas stomach, groin etc are tender but not sore - I know I've had something done to me but other than that it is OK.

The dreams appear to have subsided and the only really recognisable difference in me is an anger about the way they went about this at the Hospital. Not my Consultant's fault - just "the System" and the sheer number of sick people in Hospital at this time of year. I do hope that the results are such as to ensure that I no longer need to go in for this level of surgery again.

Friday, December 26, 2008

Not good

My Laptop Computer appears to have died. That will make life interesting as I was about to do its back up earlier this week and didn't get around to it. I'm trying to work out what is on there that I need and I think that probably includes all of the latest work I completed on the history I was working on. I now need to check whether I put that in a share and where that shared area was. It could make next week very interesting indeed if I am trying to complete a document that I have already written and lost.

Oh well, it is a bit of a pain in the ass though as I just realised that I had put a list of people on it but can recover that from a friend.

Life without IT can be a challenge.

Wednesday, December 24, 2008

Merry Christmas

To all my fellow sufferers and warriors and survivors - have a wonderful Christmas. As a friend of mine who survived his cancer calls us The League of Extraordinary Gentlemen (its OK Ladies you are included too). We are indeed that - it is a club none of us wanted to join but now we are here, we are all extraordinary n'est pas?

I am just waiting for everyone to come home and to start celebrations with my family, my neighbours and my friends. My Nephew has just arrived from Luxembourg and he has been cheering me up with his stories. Soon Mrs F and L will be here and we can start to celebrate and enjoy ourselves together. I can start to lubricate with beer - which is a bonus!

It is a time of celebration and happiness but also a time of reflection. This year I look back to some of my friends who will not be here at this time, who didn't make it and I will spare a moment for a few who face that very challenging journey soon. I hope that they will have time to find peace and solace and the courage to face their very difficult journey ahead. This Christmas for them I hope will be full of hope and laughter and joy and not one of fear or bad reflections.

This year has been a turning point in my fortunes both in my health, my career and personally and I will be thinking about how lucky I am to have such good friends (with their remarkable senses of humour) and so many people near and far interested in and rooting for me.

It makes me feel very special and very privileged and it demonstrates that in this world where there can be so many ills and terrors, disease and disasters there is an island of hope that is called humanity and the care for (and of) your fellow citizens. If nothing else that I take away from this year it is that charity, friendship, trust and honour are all things that set us apart from the rest and I hope that we continue to demonstrate that in 2009.

Thanks for all your kindnesses and good wishes, prayers, black humour, toilet humour, bringing me down a peg or two, building me up, helpful suggestions and ideas, silent strength and just for befriending me, I cannot even begin to tell you how much it has meant to me this year to have so many people rooting for me. I appreciate it SO much.

Have a great Christmas - mine starts in 5 minutes :-)

Scar Wars VI - Return of the Bed - I?

Scar Wars VI
Return of the Bed - I

In a Galaxy Far, Far Away
Our Hero returns having been trained by Yogi (sorry Doug it fitted)
Our Hero has lost his sense of Tumour
All that is left of the Carcinoma in Situ has been blown away
The BCG and its Forces of Good have smashed the remaining cells of resistance
Once again the bladder functions as it should
Our Hero, keen to ensure no further outbreak of hostilities goes once again into the NHS
Filled with Trepidation (and other mind bending drugs) he enters the Theatre of Operations
Just One More Time!

Darth Urologist and her evil henchmen having failed to operate last time are keen to get our hero on to the table? "Do you expect me talk Darth?". "No I expect you to cry 003 and a bit" (thanks Flocky - I'll never get a girl friend now!).

Having starved, as instructed and arrived shaken, not stirred at the Hospital, our hero was led immediately to Theatre Preparation but was told, as were the others in the area - "don't get changed as we don't have any beds and you may be cancelled." "Deja Vu" thought our Hero Nero! "What did you say?". "Deja Vu" "Wow I thought you were about to say that". Time ticked by and our hero practices deep breathing and self hypnosis and listens to music and generally brings his blood pressure from off the boil to slightly above having your head squeezed in a vice.

Then the inevitable happens, the Registrar walked in and said that we are cancelled but asks me alone to stay as I am a priority and it might be possible to find a bed. The chap opposite gets dressed and goes off to enjoy Christmas and new Year without his Prostate being bored out. The other chap, who has been very nervously waiting decides to pay to go private and within 15 minutes he is signed up and gowned and off to Theatre giving me a nervous look and a thumbs up. I smile and wave reassuringly to him. He looks like I feel - poor fella, I know what he will feel like in the morning. Bless his cotton socks, on the way down to Theatre he tells the Nurse that he is worried that I may get cancelled again. I tell the nurse that I was feeling for him too as he has been having a terrible time and was really anxious.

I am told that it is now looking very doubtful and I am getting to a point of having not eaten for 16 hours or so and not having drunk anything for 6 or more hours and Mrs F. turns up and we discuss going home.

Suddenly all hell breaks loose and they want me to change and get ready to go to Theatre now. The urgency in their voices can only lead to complete adrenaline switch on in my body as they rush to get me prepped for the Op. The Porter arrives as I try to put my music in to calm myself down as it was such a shock to the system. I cannot listen to music, my BP is off the scale and suddenly I am really anxious as if in shock.

I arrive at Theatre and suddenly there are about 10 people around me all talking at once and I am now getting quite upset as they are all gabbling on about something and I can't seem to answer one at a time and get them to ask questions slowly. Eventually I get some sort of sense and we go through the check list, someone almost gets a smack in the mouth for some garbage question but I just give an angry retort back to whoever that was over my left shoulder - I can't remember the question now just that it was stupid. Calm descends on the room when my consultant comes in and leans over and smiles at me, she notes my heightened state of anxiety, apologises and says they will try and make things calm for me. From then on, only two people talk to me - it must have been their lunch break - The cannula goes in and hurts a little and they start prepping other areas but this time with little urgency and not roughing me up as they were doing earlier. The last words I hear are "a little pre-med and it should feel like a gin and tonic without the hangover".

I awoke in recovery and had a drink of the best water in the world, poured from the purest fountain of mountain glacier water (or probably from the cooler) however it is the best coldest water and tastes absolutely fantastic. Then I found I was catheterised. I was not happy, in fact, it must have been obvious as the registrar was called over who mumbled something about it and how all looked OK but didn't really answer me why on this occasion but on none of the other I had this bloody pipe and wash out attached to me. As is usual in recovery you come in and out of consciousness. I went in and out the washout bag was removed and when I came to next I was going to ward 5 - they were impressed that I knew where I was going as they had to look it up and then said I was right :-) They told me as they gowned me up where I was going.

I was on Oxygen and a drip, I came off those shortly after 2:30 in the afternoon but they kept the Christmas tree of valves and bits on the cannula which meant it was cumbersome and liable to get caught which it did on a number of occasions. The catheter was (thank goodness) a smaller one than I have been used to and so it was uncomfortable but manageable. I started drinking lots of water. I was less than impressed when I asked for water to be told that it could be got from any of the taps. I did explain that as they had connected me to a bag on the side of my bed and that the tube passes between the guard rail and the bed that even Harry sodding Houdini couldn't have escaped, finally did they realise that perhaps they would do it. Eventually Mrs. F arrived and she got me some water but the same thing. On the last ward we were not allowed to get it yourself as they needed to work out liquid in and out. On Florence Nightingale's ward, the war wounded and other miscellaneous ill people obviously didn't have that sort of problem and I yearned for the Urology Ward where at least they understood such things.

The General Surgery ward - what can I say, lots of very ill and very frail people with stuff connected all over them. Two guys opposite were almost bed ridden both had made successful expeditions out of bed on their Zimmers to the door and back. They were delighted with progress as they should be, they had made a distance of about 12 feet each. I'm not detracting from their efforts, just to highlight the sort of ward I was on. I was fitter than some of the nurses on there!

So, I wasn't happy and the poor old nurses were running about with lots of sick people to clear up after and so I got left to my own devices. then I found out I was staying in overnight and the catheter was coming out at 6 in the morning and I had to pee twice after that to go home.

I remonstrated with the nurse about it and she said how did I know what this was all about and I did explain that as this was the fourth time I had had this particular procedure I believed I was qualified to know what normally happened. I didn't win any friends. I was getting, by this time, pretty hacked off with it all.

My consultant arrived and she could see that I wasn't my normal cheery self. She explained why I was catheterised after I asked her why in a voice that was scathing and unbelieving at the same time. Apparently she felt that peeing would be too painful on this occasion and decided to do this. Me? I think she let someone else do the operation and they were less than gentle with me and she had to make that decision. I also asked her why I had this thing drilled into my upper left arm/shoulder. It was an Analgesic needle apparently in case I needed pain killers. I asked if it could come out as I wasn't using it and am normally prescribed oral pain killers. Sure was the answer but the nurses wouldn't take it out until I was leaving which again mighty pissed me off. By now the Cannula was also beginning to hurt a lot and they wouldn't take that out either.

Frankly - bollocks to the lot of them was my attitude by this late time of afternoon - about 5 pm. I was in a really foul mood by now and the other guys were really chatty in the ward. I spoke briefly to them but then stuck my MP3 player on and tried to calm down. It didn't really work and I had a meal, and Mrs. F. and L came in to see me with a pack of Wine Gums (for medicinal purposes only). Mrs. F. was pleased that I was a little happier than when she had left me. Not much gets past her and L is a very funny girl and so we had a lot of laughs and L and I destroyed a large bag of Wine Gums in the time they were there.

After they left, it wasn't long before lights out was happening and I was happy to have my light out at 9:30 and try and get some sleep. I was still too angry for sleep and the MP3 player did its best. I got perhaps 2 or 3 hours of fitful sleep but the chap diagonally opposite wasn't at all well and coughed and wheezed and was constantly being attended to. In the ward across the way at about 2 in the morning all hell broke loose as the lady in the bed was horribly ill and they needed to do a major clean. There were bangs and metallic crunches and rings as people clattered about to control her condition and to make the bed fit for her to return to.

In fact, that is the thing about Hospitals - you don't get any rest there are always people walking past you or along the corridor and dropping things and banging into doors and people taking measurements and all that. It is worse before you go to Theatre as every footstep could be the one coming to get you.

The Hospital experience is not my favourite. I am hoping that this was the last time that I need to go through all this. The mental preparation and the dread of it hasn't gone away, in fact I am better at this than I have ever been because I have prepared myself for it.

I suppose the best news about the whole thing is the fact that the bladder looks OK, it has a few phaser blasts and light sabre marks to the walls where the BCG and surgery have done their thing and in reality, I am most grateful to the team of people who have done this for me. Whilst I may not have enjoyed the "customer experience" the outcome looks to be the one that I've dared to hope for. Another few weeks waiting around to find out the results and I hope to have a good reason for mindless celebrations.

So, after a horrible night in the ward, at 6 the nurse came and removed the catheter and joy of joys no bloody injection before hand - they fill you full of antibiotic and blow me if they don't come along and whack you with another lot - but this time, out came the catheter and all was well with the world apart from the leaking you get for the first few hours. I duly filled myself up with water and made use of freedom from the bed - on reflection I should have done a Mel Gibson at this point, stuck on some blue paint and screamed out "FREEDOM!!!" at the top of my voice. I doubt anyone would have awoken and it would have been met by coughs, wheezes and the odd fart no doubt!

I asked if they would NOW take off my cannula and the device on my shoulder so I could have a shower. "Have a Shower with it on" These people are taking the p*ss I thought. In fact I thought of harsher words than that and at one time, I was considering coming home and taking out said Cannula and device myself - how difficult can it be? I was desperate to get home. I managed to sort out a good pee in a jug for them and they recorded that, had breakfast and delivered another "good" one and then got the news "just one more" I thought they were "F" joking. When I said that "you're moving the goal posts" I was told it has always been "three". "It wasn't last night" and neither had it been at anytime before. Apparently now it is as I asked two or three people. I then decided to divide and conquer by getting all the nurses involved. Having done the third pee and it being of good colour and consistency, quality and quantity I could go home. out came the cannula which bled like you cannot believe. I was surprised I had that much blood in my body. The other thing in my shoulder just came out - it didn't seem to be in a vein or anything but there was a needle dug in me :-( YUK.

So I got dressed and we re bandaged my hand after staunching the blood. I said goodbye to my fellow patients and got out as fast as I could. Rang home and Mrs. F. came and got me.

The Registrar told me that if I got any infection (Cystitis) or any thing like retention I must get back into Hospital A&E (ER) straight away. He then informed me of the possible scenario - again he said that it all looked clear but that lab tests would confirm. Then said they would need to look inside my bladder again at 3 months.

Dread - I don't want another of these in 3 months. I really hope what he means is a Flexible Cystoscopy. Now these aren't particularly pleasant things to have but in terms of keeping their eye on you they are a lot better than the preceding I can tell you. My first and to date only Flexi was 2 1/2 years ago when I was diagnosed. The pain afterwards was excruciating but I feel I can probably deal with that now and it will be done locally not miles away as it was then. I'll find out in a few weeks time what comes next and I will try not to get too excited just yet about being clear. If I am what celebrations we will have.

That's Better

I managed a few scattered hours of sleep. I forgot that I'd be leaping in and out of the toilet as I had been drinking water all day long so it was a bit of an hour here and there. Got up, a shower and beginning to feel the bruises and where they pulled me about on the Operating Table.

My brain is still a little fuddled as I can now see from yesterday's e-mails and blogs :-) No wonder they won't let you drive home after a GA!

I'll try and piece together Scar Wars VI later and post it up here.

The main thing is that I'm certainly in a better sense of humour than when I left the Hospital yesterday. I am glad that I didn't fire off any smart arse one liners to the nurses - they have a difficult job as it is. I was almost about to accuse them of bed blocking but thought better of it. It is amazing how you can turn from being a nice rational happy guy into a monster in short order. I have to remember it is a system failure, lots of people are very ill at this time of year and whilst I was a priority patient (you are because you have been cancelled once already) it wouldn't have mattered if these had been done in January really. It is amazing how stress and frustration makes even the mildest of us into angry people.

Tuesday, December 23, 2008

Sleep

Had a few hours in bed, a few hours in the chair and now off to seek a long sleep in MY BED and hopefully all will be well with the world in the morning.

Crikey Christmas Eve tomorrow. I shall be taking it very easy tomorrow I can tell you.

Settled down a bit now

It is always good to be home. I ended up in main surgical ward - it reminded me of Florence Nightingale, the Crimea and Consumption so I hardly slept at all due to the coughs and wheezes of the sick people :-)

Anyway, certainly in a much better sense of humour now that I have had some hours napping and running to and from the toilet all day :-) Keep the liquid intake up!!

Curiously having a catheter in overnight meant no burning and stinging sensation this morning which was a relief when going to the loo for the first and subsequent times - something to be said for that then but I still cannot stand stuff hanging out of my body and I was so uncomfortable with that and the half a mile of piping on my cannula. . They need to make up their minds whether they expect quantity or quality with urination checks. They asked for 2 last night then once I did that they changed their mind and made it three. By now my sense of humour failure was almost complete. The Cannula hurt like crazy and bled like mad when it came out and there was another one stuck in my upper arm near my shoulder which came out with no problems. Never had one of those before either. I wonder if they prepped me for something larger or because of the heightened state I was in did something else to me. I'm sure this wasn't the handiwork of my Consultant perhaps one of her apprentices.

Anyway, I'm back to my normal happy self after having gone through a pretty anxious and unpleasant day and a half. I've never had a set of biopsies like this - it actually felt like the 2nd TURBT in terms of how rough I felt. The cancellation bit was a nightmare and then as I was about to go home to reverse that was devastating, not that I didn't want the procedure, that I had resigned to not getting it done to 2009 in January and then all of a sudden it was panic stations, get the gown on, wow your blood pressure and heart rate are high - "No shit Sherlock!!" :-) I was into Theatre in 5 minutes flat - that from about to put my jacket on.

More when I feel up to it- have sat too long on this hard chair and can feel complaints coming from nether regions :-)

Back in one day

Fat chance. Back this morning. OK but a bit more battered and bruised than any of the previous. I thing they used a rusty drain pipe. Can't believe it I was catheterised overnight too, had bits sticking out of me and had a terrible night's sleep. Home now. I am going to hit the shower and lie down in a darkened room for a while.

Good News = Whilst there is red patches and scarring - it all looks normal. Obviously microscope will determine that. I wasn't impressed that I may need another of these in March though :-( More when I settle down - it was all a bit fraught as I was cancelled almost and then straight into Theatre at the 11th hour - nerves frayed to pieces as is patience in keep changing the goal posts on getting out.

Monday, December 22, 2008

A disturbed night

The dreams were back with a vengeance last night. In one, I waited for hours and hours to find they'd put me in the wrong ward and missed it again. They eventually put me last on the list. In another I met the in-between man - he holds the injection to bring you back from the dead and he'd had two already that morning. Pretty obvious where my brain was in gear last night then?

Have had my tablets and showered and I am packed ready to go. There is about one hour to go now. I'm tired but otherwise relatively neutral at the moment. It seems to be the pattern that the days leading up to the event are more anxious than the day itself. I was doing my deep breathing self hypnosis stuff yesterday but probably heightened my awareness of today's events rather than settled myself down.

I have my MP3 player on me and so I'm ready to get going and get this done and out of the way. I'm also ready for Christmas having sorted all the presents out and everything is wrapped. The biggest problem this year has been the chaos of the last two weeks where I have missed sending out cards to everyone or to some people. I did a lot earlier in the month and somehow I think I lost my list and unlike me, I cannot remember who got cards, who didn't and whether I sent them an e-mail or not. It is very unlike me - I haven't sent out the Company Christmas Cards (I normally do about 100 printed and 700 or so e-cards) either. It is a sign of the disruption the cancellation caused me that a lot of these things are not done.

Sunday, December 21, 2008

Off to bed and guess I ought to get packed

I haven't done that - a bit strange but I just realised that I haven't packed my case. I'll do that now and get off to bed and get a good night's sleep. Some relaxing thoughts and breathing and I should be OK. I need to get up early and get ready - Mrs. F is going to drop me off before she gets on with her day.

I do hope that I get out on the same day this time - it is always much better to sleep in your own bed I reckon and you feel far more comfortable too.

That is food out of the way

I've had my evening meal and I'm having a last coffee and then just drinking water from now on. No more food after midnight (or was that for Gremlins?) I can have water up until tomorrow morning at about 6:30 or so. I'll need just enough to take my tablets and then I can head off to the Hospital. Some breathing and positive thoughts and my MP3 player and off we go again.

Let's hope that this time there are beds available and I can get this over and done with. It means a lot to me to get it out of the way. Each of the steps you take along the way are major milestones in getting cured and moving on. This could just be the last of the "heavy" steps along the way. Diagnosis, TURBT, BCG and Biopsies plus the IVU X-Ray (my personal worst experience of all time) can all be consigned to the experience and the "in my past bin" I hope.

Only present I want this year? Yes you guessed it. Fingers and everything else crossed that it all gos to plan tomorrow.

Ho Ho Ho

A Good Reason Not to eat Ice Cream
Very funny - I saw this - it is too late for my Christmas List but how about coming home from Hospital to see this on the Toilet???

Mumbo Jumbo?

I used to think that Hypnosis was just that Mumbo Jumbo - I'm the sceptic (not septic) and the enemy of Snake Oil and all that stuff but I did go for Hypnosis and for me it did work. I was a bit tense the first time and a bit worried about it. I needn't have been and it worked really well on tackling some of the very serious anxieties I used to have going into Hospital. My blood pressure would go through the roof (it still goes up but not as much) and I'd be in pieces. Fears from my childhood of painful procedures, being wired up for days to rigid bits of kit and spending days recuperating at home made for me, after 11 or so operations, with up to a month off on each occasion have a childhood and education interrupted by what today are minor procedures.

Steve in his excellent Got Bladder Cancer Blog advocates using a breathing technique SEE HERE

I use something similar to the second technique:

  1. Find a little space preferably where you are not disturbed
  2. Get comfortable
  3. Long slow deep breath, hold for mental count of 4 as you exhale slowly close your eyes
  4. Silent mental count 1 to 10. Count each number as you breathe out. Between each breath say to yourself "one..Deeper Relaxed..Two..Deeper Relaxed.." etc
  5. By the time you reach the number 10 you can go deeper by visualising:
  • Counting again from one to ten
  • Going down one escalator after another
  • A beautiful spot in nature, noticing the sights, sounds and smells (or somewhere you feel at ease)
  • Skiing down a mountain
  • Walking downstairs
  • Swimming in the sea or lying on a sunny beach
  • Floating gently on a cloud

When you are at a level of trance at which you feel comfortable, give yourself positive suggestions. Give each suggestion at least 10 times - be passionate about it; feel it, believe it

Emerge yourself silently and mentally by counting from Ten up to One and then open your eyes. As you are emerging yourself, give yourself suggestions that you will emerge "full of confidence, energy and vitality for the rest that you have just had, feeling marvellous in every way"

The suggestions I was given are below:

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.

Now - you may think it is all Mumbo Jumbo but for me - it worked really well and this, together with music (all types work for me although thrash and heavy rock don't really soothe the mind in a Hospital - they are OK post Op though) help me to calm down. I can take myself into Hospital and not need anyone with me anymore and I can and have managed to see off the 3 previous lots of biopsies and 2 previous TURBTs plus 24 BCGs this will make 6 visits for General Anaesthetic procedures on me in 2 1/2 years. Sure - no one likes it but if you can control yourself then you begin to get to the purpose of what this is all about. It is about curing you and making you better. Sometimes it doesn't feel like that and yet at the end of the day it IS what this is all about.

How can I be of a cheery disposition and (normally) be positive? I often consider this to be a number of things:

  • A wake up call
  • A blessing (perhaps not quite the right word)
  • A turning point
  • Time to reappraise what IS important

I wouldn't say that you get some sort of deep and meaningful religious insight or suddenly the meaning of life pops out and bites your bum or anything but you do start to see things in a different light. Seeing the operations as steps to getting better and the treatments, which are challenging to say the least, aren't there to be horrible or to hurt you they do actually make you fight and get rid of (to a great extent) your Cancer. You just have to mend your thought processes around to the positives in all the horrors that are done to you. I still subscribe to the old adage that there are people far worse off than you and that I am lucky to live somewhere that not only has the ability to cure me but has the staff, resources and know how to make it happen. In some places in the world, I'd be dead by now, that is why I shouldn't be angry anymore about having got cancer and that is why I should be positive all the time.

A quiet day

L - who is off to Argentina next year on a World Challenge Expedition - is out again today and for the next three days bag packing and hoping to get some money from shoppers so that she can raise the money to go. She is meant to raise as much as she can herself and she has done really well. She needs about £3,500 to go and perhaps £1,000 for equipment. She is over 1/2 the way there.

I found out that Mrs. F didn't tell A that I was going into Hospital although I think that A probably knew as I'm sure I would have said something. She will let A know after I come out. Mind you not that A would be particularly worried about me going in anyway.

There is little left to do except for me to pack for tomorrow and I must catch up on my studies and on writing up this 75th History which, I am pleased to say looks to be nearing some sort of shape as I have all the information and the general layout sorted out now.

I'm trying not to think about being uncomfortable next week :-)

Sorry - it still cracks me up every time I see this photo - OUCH :-)

Saturday, December 20, 2008

This time tomorrow

I actually hope to be asleep and getting ready for Monday's Op. I have managed to do a pile of work today but need to consolidate that somehow and to catch up on my Foundation course work. I am actually 2 weeks behind which is a worry. Mind you - quite how I could have studied Plato last week and Poetry this is beyond me - my head just wasn't in it.

I also need to work out quite how I go about doing my two assignments. All of this can wait as there is always bags of time over Christmas and the New Year when I am at a loss as to what to do and so I need to make sure I do it then. it can all be done sitting down and I have a Laptop so it isn't as if I will hurt myself???

I have to remember that next week - don't lift or do anything too strenuous. We just realised that I cannot walk over to me in-laws on Christmas Day - it is just too far and there are a couple of up hill stretches that would for sure mean I'd start bleeding. The number of times I've done stuff and regretted it afterwards!! I just need to remember that they do dig much deeper with these biopsies and I have to be careful for a good three or four weeks.

You know, the main thing is to hear the words all clear in the New Year. It wouldn't quite be re-birth but it could be damn close I reckon.

Soon be over and done with

I have plenty to do over the next day and a bit of what's left today. I have to get my head back into going into Hospital mode again. Christmas can start on Tuesday I think. It will be strange going to our "traditional" Christmas party on Christmas Eve. Our host has been in Hospital and just out having been diagnosed with Diabetes and now has to inject herself - she and I share the same "love" of needles. I imagine the food will be curtailed but the girls will no doubt muck in as she and I lay there recuperating and relating Hospital stories to each other.

A will not be there but I hope all the other children (well two are 18, one is 16 and one is 15). We have been having this party for 17 years I think. It is nice - Church and then down the road to have a great evening. All three families used to go on holiday together and we went to Portugal a number of times and France and were able to hire large Farm Houses and Villas. All that is now changing with 2 of the oldest having been away at University, two at College and one left at School. It is like a switch - once we are there and the food and drink start to flow we know that Christmas has started.

While we were out last night meeting A's boyfriend's parents - a very nice meeting I have to say - L decorated the House, put up the Christmas Tress etc and so it looks Festive now. We don't tend to do this until a few days after C's birthday which was on Tuesday.

I've started pulling out my Christmas CDs and I'll see if I can cheer myself up a bit :-) Not that I'm down, just that yukky feeling prior to going into Hospital the sort of dread feeling - difficult to explain but as if you were about to go into a difficult meeting where you were going to get roasted by everyone. Anyway, sure I'll find plenty to distract me as I go on during the day.

Friday, December 19, 2008

Last Day

My little baby is off skiing in the morning and I wont see her over the Christmas period. Mixed emotions about that. I'm really pleased she is off doing things herself and doing something I have never done (well only for minutes have I ever skied in Finland years ago). I think that is commendable and I am sure she is going to have a great time. That leaves Mrs F and L to be with over Christmas. It will be a massive change - after all we have had 18 years together as a family at Christmas.

So tinged with a little sadness I'll see her off tonight and also with some satisfaction that she is getting and gaining her independence. It is hard to let go but you must.

Not a great lover of Chili

I think I woke up every hour to have a sip of water last night. I don't like chillies a lot well at least not like they were presented in the food last night. My throat certainly knows it has had some and quite how people eat really hot ones is beyond me. I like spicy but not chili hot food.

I didn't have a lot to drink either, a few beers at the pub and one with the meal and that was it, so I cannot blame that for waking every hour.

This morning all is OK with the world, the sun is out and I'm at my desk working before 9. It's the day of the Office party but I'm not tempted to go, lovely though everyone is at work.

I'm catching up on e-mails from friends and find mixed news from them. One has had a Brain tumour and is undergoing treatment, another is recovering from a nasty disease that threatened to stop him working. It didn't but the recession has done that and he gets made redundant today. Judging by the news coming in, quite a few think their jobs are at risk. A couple are getting odd contract jobs here and there. It depends where you look as I still get a steady stream of offers for Program Management work and yet certain retail and manufacturing work is at a standstill. Goodness knows what the banking sector is like but my colleague last night reckoned that it was currently a bit of a "blood bath" and hard work to make a living working in. He may have to lay off some of his people having already gone to short time working and instigated other cuts. He wasn't happy about that but has to face the reality of the situation.

Anyway, the rest of the day beckons and I need to get on top of this history research.

Thursday, December 18, 2008

Useful Videos

There are a couple of useful videos on YouTube about Cystoscopy

Here is the male version



Here is the famale version

Time to go out again

I am about 1/3 of the way through the research for this history I am writing and that has taken the best part of the afternoon and now I need to go and get myself fed and ready to go out and meet a friend of mine and take him for a beer to his local. I am kind of looking forward to a chat with him. He is a lovely guy and we just need to make sure we don't drink too much - we are prone to doing that occasionally :-0

Finally I get down to working

It has been a long time coming but I finally started to get organised and managed to clean the office up and not get distracted by other things.

I sent an apology e-mail out last night to many friends as I have been so disorganised this year that I haven't sent out cards, newsletters or any sort of correspondence. At least I got an e-mail out to most!

I am writing a History of the Lodge - luckily only the last 25 years of our 75 year history and it is a bit like watching paint dry at the moment as I am trawling through the minute books and taking information from there to use in the document. There is a lot of going forwards and backwards in time to cross reference things and it is time consuming and rather dry work. I hope to be able to keep interest levels up or I'll never finish it.

Discretion

I keep getting invited to the Office Party on Friday but I am reluctant to go as I have a meeting with A's Boyfriend's parents in the evening and the very last thing I want to do is turn up after a few beers to that. It would make for a good script in a sitcom though!

I'd love to go to the Office Party, it would be a real hoot and I know that a number of people want me to be there (I can be quite amusing and almost charming at parties). The trouble is that I know I wouldn't just want one beer and if I have an audience, then the actor - well stand up comic - comes out and we would have a good laugh and joke.

I think discretion is definitely the right thing to do. I must be on my "best" behaviour at least to start with on Friday as I have never met these people before and I am not the easiest person to deal with especially if you don't get my sense of humour or my attitude to life. With a light lubrication of beer I can imagine that it would be a very one-sided conversation. They are all off skiing in the morning as well so I imagine it wont be a boozy affair.

Technology

I've been in the High Technology sector most of my life and computers still are a pain. I have three of my own in my Office and each is a specific machine. This one is a large powerful desktop, large monitor 19" and keyboard and mouse. I have a tablet PC which is very light, portable, touch screen that folds over and it has hand writing recognition - it is very nice. Also I have a semi laptop with a 17" screen which is more a desktop replacement but has everything I need if working away from home.

This morning, with an urgent MS Update required, two of my machines were playing silly buggers as they were updating themselves (I'm sure I turned off that feature a few weeks ago) and hence I lost a number of configuration settings. The other PC just refuses to work properly this morning and whether it has been updated or just given up the ghost I now have to find out. It is typical that this particular machine is the one I need today as I was working up a few documents on it last night.

I cannot believe that in this day and age we cannot do better. I'm lucky, I can generally fix stuff like this but Joe Public must wonder what on earth is going on.

Hopefully after I have this fixed I can get on and tackle the pressing parts of my growing to do list.

Wednesday, December 17, 2008

What's important

Yep, it is important that I get this done and it is good that my friends are rallying around and will cover for me. I get worried about letting people down but that's just my nature. the quicker I get sorted out then the quicker I can get back to a "normal" life whatever that may be.

Whilst next week isn't going to be easy it really is the best way forward, I know it is and whilst I feel a little uncomfortable about it, it isn't the end of the world if some of my tasks don't get done.

I just need to convince myself - if I repeat it often enough perhaps I will :-)

That kind of day

I wasn't meant to be working.  there is nothing for me to do but today, I got a small stream of minutiae that just beggars belief.  Surely it would be as easy for someone to pick up the phone and do some of this themselves? 

I have wasted and frittered away almost the whole day on little stupid bits of work that are total distractions to what I am doing.

In addition two massively long phone calls and suddenly I find that it is towards the end of the day and hardly any of MY stuff has got done.  I've saved lives everywhere else and sorted out stuff that you'd hardly need to think about and most people obviously didn't.

Now it looks as if Thursday and Friday night are also accounted for and suddenly the pressure is on to make a real impact into the growing pile of things to do before Monday.  The most annoying thing about this is I used to be the most organised and structured person and these days all of that has disappeared and things just pile up.  I just don't seem to be able to concentrate on the job in hand but I am also working with people that all I do is fire fight for them all the time.

22nd December or 5th January

Good old e-mail.  Just got one in offering me the procedure next Monday or in early January.  Typically none are convenient but the 22nd is the only one I can go for as I have a very important meeting of my Lodge on the 10th January and I do a lot of work in that and I need to be fit.

The trouble is that I screw up most of my colleagues and they will have to take the brunt of the enforced absence during our practice sessions.

Needs must and suddenly my attitude has changed and so has how I feel.  My stomach is churning just writing this.  I just want it out of the way now but how strange that I feel this different from reading one e-mail and making a decision to go in on the 22nd.  It is a sick feeling way down and far away in my stomach and at the back of my throat.  It must be the suddenness of it all I really do feel most strange.

Disappointed

It has been just over a week and by now I should have been suitably recovered to go out and start to enjoy myself but not really drive or do anything too strenuous as they do cut deep with these biopsies - deeper than when they actually did the TURBT so they say.

In a way I'm pleased that I am off work but also disappointed as it would "all be over" by now apart from the results of course.  I temper that with the fact that the system looks to be in some difficulty at the moment with a vomiting bug sweeping the country and the Hospitals and many people ill with winter ailments and a number who have been injured with falling over in the ice etc.  They, of course, need those services rather than me.

We are coming to terms to what Christmas is going to be like without A who is off to France skiing.  I think she is also beginning to realise that it is her first Christmas away from us.  It will be a bit strange but there you go, inevitable really.

Today it looks as if I may actually get some work done and so I ought to sign off the blog and go and do it!

As a by-the-by it was interesting that Steve's and my blog both now rate highly on a Google search for "bladder cancer blog" we are on the top two pages - that's impressive.

Tuesday, December 16, 2008

So Mrs F came back from work

And we went out for lunch.  My next door neighbour who has had (and is now clear) of Lung Cancer - they cut one of his lungs out! turned up and so we had a drink for that.

So nothing got done this afternoon at all.  So much for thinking I had finished going out and drinking/eating etc.   

Was interesting talking to my next door neighbour and his brush with the Big C.  Gee, they just whipped out a lung and he got the all clear yesterday!   Less than a year but as he said - a lucky year in that way and it is amazing how we think like that isn't it.  He then went on to tell me that it was next to nothing compared to what I had gone through???   That kind of shocked me.  I still don't think I have gone through that much or that is the approach I am taking.  I suppose that to anyone who hasn't had it, it looks pretty bad.  Maybe I'd better not dwell on that, I've asked myself that question a number of times.

I'll ask it again though - I wonder if it is a lot worse than I have experienced it to be?

Too Much Time on your hands?

Someone obviously has:


Hardly worth the effort

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

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

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

I've been here before - before :-)

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

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

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

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

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

Monday, December 15, 2008

Ward Size

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

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

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

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

Some Additional Data

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

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

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

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

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

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

Sunday, December 14, 2008

Three down one to go

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

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

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

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

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

A quick journey home

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

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

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

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

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

Saturday, December 13, 2008

Well I enjoyed that

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

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

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

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

Friday, December 12, 2008

The Upside is

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

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

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

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

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