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 :-)

On being cancelled

My boss's boss said to me that it was disgusting about the Hospital cancelling. He reckoned that I would be resilient but felt most strongly for those who were older or more in need of surgery as it just added to their worries and more so given the time of year and perhaps other thoughts running through their head.

I like him a lot as he is insightful and intuitive about the needs and wants of people. I suppose being the head of a Charity you need to be seeing this as well as all the aspects of running what would be classified as an SME if it were a business. With about 40 staff we are a reasonable size.

It got me thinking this morning that my disappointment is that I wont know where I am so there is some uncertainty. Lets face it, I've been clear for some time now and a reversal would be a lower percentage option than a clear. A reversal would be devastating but controllable. This particular Cancer (the version I have) is slow growing and so a delay of perhaps a month or two is no real issue in terms of the long term outcome of my situation. Last May it could have been as the results would determine a further course of BCG treatment.

So, what about those who had tumours or other things more serious. The anxiety for them knowing that there was something growing inside them that they know to be dangerous (but may not have researched this thoroughly) can only be causing them more worry.

All of this because some Spreadsheet Manager decided to save costs and improve efficiency. In a way you wish the aforesaid Spreadsheet Manager would have been in the next bed waiting for a life saving operation and then seen what the news meant to them. The rest of us are a tick in a box for the moment but I know our Consultant will be going through the roof. I wouldn't want to argue with her - ever. She is brilliant but I wouldn't like to cross her or receive the benefit of her wit...

The cost not to operate means that in effect the Hospital will now have to pay twice for our procedures whereas if they had the beds they would have paid a one off cost. The National Health Service gives great care and whilst it occasionally screws up, you hear far more good things than bad. The trouble is and you can apply this to most large institutions is that you have managers who cannot manage and a bureauacy that would make your head spin, the litigious society (thanks US) that we now have over here and the utter nonsense that goes on under equal rights policies (the underlying stuff not the intent) plus constantly changing Government 'targets' are wreaking havoc and distracting top management downwards. If they could actually put together a vision, get everyone bought into it and execute it we would have the best health service in the world but not whilst some pencil pushing, spotty jerk with an NVQ in spreadsheet pie charting is controlling patients and health care professionals.

I think that is this morning's rant out of the way :-)

Thursday, December 11, 2008

Another Site and another view

This is an interesting site and a thing that I did know but thankfully it doesn't apply to me but, there but by the grace of God go I....

The Blog Site is here


What Urologists Faill to Tell Their Male Bladder Cancer Patients @ Yahoo! Video

Does my bum look big in this?

Theatre Gowns. Why?

Your arse ALWAYS hangs out the back of them no matter what you do. Invariably the cords to do the gown up with are broken or otherwise knotted. The cords are round the back making it impossible to do up anyway unless you do it up at the front and then try and get you arms in the holes! Those who can do them up are hideously deformed or are contortionists.

If you do manage to do them up there are always gaps where your arse hangs out.

It says all over the gown "For Hospital Use Only" For the life of me I have absolutely no idea what on this planet you could possibly do with one other than use it in Hospital, you wouldn't be seen dead in one and frankly and rightly the Style Police would arrest you and lock you away for life just for wearing one. Then there are the DVT Stockings - vitally necessary but again, no fashion statement there :-) The whole thing looks like some bizarre secret ritual and it is played out every day in Hospitals around the world. Not content with having to go through the psyching your self up for the process, the trauma of going into hospital etc, when you are there they ridicule you by making you dress up like a clown :-)

US - Canada - UK differences in TURBT / Cystoscopy

Steve sent me some details of the US and Canadian TURBT regime and I have reproduced these below. HK in Canada supplied the Canada details.

I've added Cystoscopy here as well because, in essence, that is what I have to have the biopsies taken but they use the same tool (I believe) in both because it cuts and cauterises the procedure is similar.

Here is the US:

In the US you go to the hospital as an "outpatient" and do not spend the night. After the surgery you get 1 hour of Chemo (no salt wash) and 3 hours of recovery, then you are sent home with a catheter. You take codeine (lortabs) for a couple of days, and on the morning of the third day, you remove the catheter yourself. By the fourth day you are back to mostly normal movement and should have bladder control with only minimal discomfort.

Here is the Canadian:

In Canada, you need to not eat after Midnight. Next day you need to go 3 hours before the Surgery, they put IV and Antibiotic through IV. Once the Surgery is done, 2 tubes are attached in Catheter ,one to clean your bladder with Sodium Chloride and the other to void through Catheter. Also IV is attached to. Doctor comes and checks in the morning (after 18 to 24 hours), and informs the nurse to remove IV and catheter.

Need to Void in the bottle to check how much urine comes out. Once it okay then you need to go home. If it is not enough then doctor decides either you have a Catheter go home or you stay in the Hospital. Sometimes doctor will come after couple of hours after surgery and he will give Chemo. ( doctors Decision). I hope this will help you .

Doctor will give you antibiotic once you are released from the Hospital.2 to 3 day is very painful. If you bleed a lot , need to go to Emergency that what doctor tells the patient. After 2 to 3 weeks result is given about the Tumour.

Here is the UK:

Typical no eating routine - if you go in for an afternoon operation then no food after 7:30, you can drink small quantities of water up to 11:00 and you go to the Hospital to arrive at 11:30. They take you to a pre-theatre area, get you kitted up into one of those gowns for operations, get your DVT Stockings to put on and you look a right Charlie! They do the usual tests and operations start at 2 pm. You can go any time from 2 to about 4 or 4:30.

You are wheeled to theatre - you would have signed consent forms and they go through a check list. You go to a prep room where they insert a cannula into the back of your hand and it depends whether or not you are awake or not whether they wire you up to the ECG and BP cuff etc. Sometimes it has been done before the cannula sometimes they must do it after they knock you out.

If a TURBT you wake up with a catheter inserted with a couple of large bags of washing out fluid and a bag for that to empty into. This is usually a frame based system to the side of the bed. Later you may get a leg bag to use. Often you will have a drip in the back of your hand and be on Oxygen for up to 30 minutes afterwards.

The Catheter stays in for about 36 hours. Certainly all the next day and the morning after that it is taken out before which they give you a jab of antibiotic. The nurse takes a sample from the catheter for analysis and then drains the bulb part holding the catheter in and she withdraws it - you give a few coughs to get it moving out past your prostate. The relief is short lived - see next para!

The first time you pass urine after this is perhaps the most painful thing and after that it gradually gets better. Passing blood for a short time then after two or three weeks the scabs will be ejected.

With a Cystoscopy for biopsies you go through the same routine as above except you do not have the catheter on waking and you maybe just have the drip. You need to pee in jugs to start with so they can monitor input and output (they do that in a TURBT as well). After the first pee which is every bit as painful as the first one noted above, they monitor you for a while. If they are happy you can - potentially - go home on the same day. Normally they monitor you overnight. In general terms with biopsies you don't pass much blood at all and after a few weeks the scabs come off and you pass them.

On both you wake up with a shaved leg - when I asked about that, it is where they ground the machine that cauterises the bladder as it cuts.

If you feel up to it - this short video shows the process of removing a tumour from the Bladder with the cauterising loop. Not for the feint hearted.



I'm not certain I like the idea of DIY catheter removal. I have not had any chemo with my treatments but I know they load you full of stuff at the time of the operation.

Pain relief is normally with Ibuprofen and Paracetamol tablets. They must give you something when you are under as well of course.

Generally results are 2 weeks - sometimes I have waited up to 4 weeks.

Celebrated like I was clear

One of the office parties. It was really good and I invited those who still stood to come over with me as I had negotiated time off to fulfill my commitments. I daren't even say what the bill at the wine bar came to but what a good evening. Thank goodness I woke up on the train at my home stop!!! I was well away :-)

I have agreed a short working month and to be able to review my e-mails and be in touch. Hopefully this will allow me to get all the planned stuff finished and to have a few days up in town with my work mates. If tonight is anything to go by, it should be most interesting!!!

Wednesday, December 10, 2008

Whoops

I bought some stuff for the staff from Harrods - chocolates, biscuits etc. It was because I wasn't going to be with them and a little thank you for everyone's hard work and friendship.

They arrived this morning which was a bit embarrassing - I had expected them to arrive sometime this week and as I wasn't going to be here....

It certainly was a surprise for them to see me but there you go. We are working out a plan that means I can work at home and come in on the odd day over the next two weeks or so.

I hadn't got a contingency plan for this at all! I should know better being a Project Manager for goodness sake! Mind you, life is a bit too short to plan for everything.

Tuesday, December 09, 2008

A little surprise for my work mates

I'll go in to work tomorrow which will be an interesting meeting with everyone. It is the day of the big United Grand Lodge meeting and so the place will be full of visitors. It is also the President's drinks party in the afternoon and so I may as well enjoy a drink with the staff - I wasn't going to be there of course and gave my apologies.

I will keep my ID bracelet on for a laugh. What a crazy thing, I have to now go and negotiate time off and sort out all of the things I was planning to do because I would have been sat at home at my office and spent the time doing it.

I will need to work out quite how I can fit everything in and spend the right amount of time on each. It's just one problem after another :-)

FUBB

So how come I am blogging when I am meant to be in Hospital recovering? No beds. All of us were sent home at 3 pm which was a real bummer. It has completely trashed my week and December for me. They have no idea when I will be asked to go back in, it could be anytime!!

I'm pretty upset as I wont know now for some time whether I'm clear or not, perhaps for some time to come, like January or February.

All the plans I had as well, to spend the down time doing useful stuff is now in deep trouble. I was fully expecting to spend next week doing this 75th History for my Lodge. That is obviously going to have to be reconsidered. On a better note - it does mean that going out on Saturday is going to be back on and perhaps the gig on Friday if there is a spare ticket. There are other things too, like my assignments and catching up on my Open University stuff - I can go to the tutorial on Thursday too now.

So - the Hospital is full of sick people :-) I did feel sorry for the chap opposite me who was to have his tumours cut out but he was reassured that they were low grade and he would be back very soon to have those sorted out.

After all the psyching up and worry and adrenaline expended, it was all for nothing. I walked home and had some soup and a sandwich and I am just settling back down and calming down - if I let it get to me I'd be very upset almost tearful it is just very annoying and just think of the costs of all those theatre staff and all the preparation work that was lost today. In trying to save money you can see how the NHS losses it when something like this happens.

What does Captain Jack Sparrow say at a time like this? "Oh Bugger!" :-) How very British!!

And off we go

Well not we, me. I used to have to go in accompanied but no longer. I don't mind taking myself in and I am OK as I just go into my shell and sit quietly listening to my music. Some people just chat and rattle on and I cannot stand the TV pumping out daytime TV (whoever thought up that needs shooting). So I sit just outside and am quite happy to sit on my own until I am called.

Right - must be off then, adieu.

Awake

That was a good few hours sleep, broken only by a numpty phoning me for something he already knew about!

So now showered and dressed and have an hour and a half to potter about the place and get myself ready, my bag packed, attend to last minute e-mails and then I can check batteries, run through my check list and take myself off to the Hospital.

I'm feeling calm and in control now, it is often the way. You just have to accept that this is it what it is going to be and make the best of it and whilst the worry precedes it, this time tomorrow it will all be over and in fact in less than 8 hours it will be over so it is just like a day at work - the one that seems to drag forever. Waiting at the Hospital can be a real pain as time just drags away. You are almost relieved when the blue coats come and get wheel you down to the Theatre.

So, apart from a slight stirring of my stomach (not sure that is nerves or the porridge earlier!) I'm sort of OK about it now.

That's Breakfast Sorted

That was it - a bowl of porridge and a cup of coffee - and my pills. Going back to bed to lie down for a while and let the chaos that is the morning with 2 teenagers and Mrs F all trying to get ready on time unfold outside and around me :-)

Once they are out of the way I can have the house to myself and then get ready. More later.

Things that cheer me up


There are some really funny Demotivating Posters here at Despair




Monday, December 08, 2008

Here we are again

Preparing for the morning, the early breakfast, the walk into the Hospital (I can walk there in about 20 minutes I suppose) and the other stuff. Waiting, preparing, wheeling, coming around, p*ssing razor blades :-)

I suppose I shouldn't have had a little shot of scotch with my coffee but hey, why not? It all helps to settle me down for the night. Tomorrow will be here soon enough and I'll have my music and breathing and self hypnosis to get me through the waiting.

The back of my hand is throbbing already - I wonder if they'll get the damn thing (cannula) out earlier this time? I wonder if they'll keep me in over night and at the end of the day, well, I suppose what will be will be.

It isn't any use worrying about these things but it does play on your mind. You know what is going to happen and you're back on the Roller Coaster my friend. You don't get off until they say you can. There is nothing worse than being out of control when you are a controller yourself!

Home from work early

I was sooo bored - I finished my work early on, got the check list finished and posted all my internal Christmas Cards. I decided enough was enough and the best course of action was to come home so did an hour early and I'm quite pleased I did. Had a chat and SMS message and a nice comment on previous blog entry and I'm sort of going to keep busy here so as to take my mind off tomorrow as much as I possibly can.

I think a number of people were startled that I wasn't going to come back to work before the New Year but hey, maybe if I feel good I will go back if I can face the long walks either end of the station. That really is the test of how it will be. There are some staff parties, not least of which on Wednesday which would have been great to attend but needs must and this is far more important to me than missing a party. There is another couple in a week and a half time. Maybe those ones?

We will see how I get on. It was sad to say goodbye to some of my colleagues - I don't think they knew I was going but I didn't broadcast it. Some people know. At least they'll get their cards soon and I have laid on a nice surprise from Harrods for them a little later in the week as a thank you for being great people to work with. I'd liked to have spent some time celebrating with them but again, that can wait. Who knows I might have some really good news to celebrate and wouldn't that be fun if I did. We could start 2009 off on a positive note. I really hope so.

Sunday, December 07, 2008

Dreams and schemes and things to do

I haven't mentioned the dreams for a while. They are still around and still as real as ever. It can be a bit difficult to distinguish what on earth is going on with these as they are very realistic and generally quite plausible. The bizarre thing is that I'm placed in a different setting most of the time but with people I know well.

As Tuesday approaches so I grow more anxious, I can feel it growing and it is controllable but I know I will be a bit less my normal self tomorrow. It is a dread feeling and who amongst us looks forward to actually going into Hospital? I can control much of the feelings and the fear and in many ways I can convince myself to go through with it and with the little self hypnosis stuff I have done before it will be OK. Of course there is still the nagging doubt at the back of your mind, a general anaesthetic, even if it is for a short while.
There are still things to do and I hope to have worked out how I am going to do them considering I wont be leaping about much or be driving the car for a week or a bit more. I have to complete sending out my cards and newsletters and to do a few mass e-mailings. This time of year is always so busy and I normally have a bit of time on my side but this year - it is all slipping away :-) I'm sure it will all get done somehow. If it doesn't - well tough I suppose. No one is going to die!
I'll just have to see how I feel after I come out I suppose. Oh well no use worrying too much about it for the moment, just get on and get ready I suppose. More later I'm sure...

Sword of Damocles or something else

This next stage is all a bit strange. If it is clear and you are being checked it is because unlike actually having the cancer cut out you have cured it and it has gone away. They check you with decreasing frequency as long as you are doing alright.

What it means is that this is with you all the time then. You are effectively clear and the cancer hasn't returned and the longer you are clear the less likely it is to recur. So the odds diminish but the thought of having to go through this lot again is a sobering thought.

We were out on Friday and they have, most unusually a Cigar bar - up on the roof of the restaurant, it has heaters, blankets and all sorts and I was really tempted to have a cigar but did very well I thought not to even have a puff. It is a powerful deterrent to remember that there was every possibility that smoking in the past may have contributed to my bladder cancer in the first place.

I am hoping that all is clear as it means turning over a new page, yet again, in this ongoing treatment and recovery process. Perhaps I can turn back to some long term goals and to shake off some of the baggage that goes along with it. Life has been put on to pause for 2 1/2 years so far and things really need to move along a bit. I wonder whether the worry of recurrence can be overcome. I suppose with time it can but I have a feeling that there will always be a nagging voice in the back of my head. At the moment any little ailment is cancer! That is just the way your head works.

Saturday, December 06, 2008

MP3 player locked and loaded

I've loaded up my tunes for the Hospital and they are ready to go. I put some of the original ones I had as CDs on here. By that I mean the ones I took in with me the very first time I went into Hospital.

I need to remind myself that things were a lot grimmer then than they are now and to get some balance into my way of looking at this. There are some other new ones on there too. I normally end up playing the whole lot in two sittings before and after the Op and at 1Gb of tunes - about 3 or 400 that takes some doing.

Need a laugh - this cheers me up EVERY time!

NOTE - This contains some "Adult Content" ie swearing so be warned...

Friday, December 05, 2008

Blimey

What a day - fantastic meal - toss pot of a waiter - "we are too busy to do this and so booked we can't do that". Bloody idiot - exactly who is the customer and pays your wages?

Don't start me on that. Had a great day - friend with arm break was there but nasty two place break - yuk. We had a lovely meal which could have been better had the head up arse waiter hadn't been quite so anally retentive. I almost asked him during the quiet periods ahead where he felt the custom might come from. The food was great, the company was brilliant and then I got the train which, half way home announced a body on the line which held us for a while, reversed us back up the track almost back to where we had come from and then after 30 minutes messing around to go the other way reported that said "body" had been removed and we recommenced our journey home wards. The strange thing is that the trains from this particular London terminus always seem to be filled with the loonies and left overs. Tonight was no exception. At least I got home in one piece.