Ooooopppps don't lift that

Totally forgot tonight. The shopping arrived (the Internet is good sometimes) and I just went to help out (as you do). Picked up a bag and was immediately reprimanded and then I realised quite how heavy it was!

You forget so quickly that you mustn't strain yourself. The trouble is, you just don't feel that you can't!

It doesn't look as if I've done any damage - I'll check tonight and tomorrow.

Things - their transient nature

I was also considering that "things", objects, keepsakes, even photos, videos of my family and things generally don't mean much to me since I have had Bladder Cancer. It may sound strange but I am not so attached to them now as I was before. There are now very few things that I would like to hang on to or keep.

I like seeing my photographs but realised that being there and experiencing the places was better than having the photos - I can always look on line and see where I have been after all?

So maybe there is some sort of switch that goes on/off that takes away the need for nostalgic keepsakes and attachments to inanimate objects?

Again, just one of those things that I have noticed. I really should get out more :-)

It never goes away

Interesting thought I had about this overnight that you never really get closure on bladder cancer in particular. By that I mean that you are always monitored for signs of recurrence. Some people I know are on the second occurrence of BC. I think in their case, if their BCG doesn't work then they will need to have their bladder removed and curiously, at that stage, you no longer have bladder cancer as you don't have a bladder for it to operate in.

By hanging on to your bladder you are always susceptible to BC returning. In a way, you can understand why their is a two part battle going on. On the one hand you do everything to keep well and on the other hand your brain is the other thing you battle against. Keeping on top of it is important, keeping positive.

More Pictures - Copenhagen Opera House

The absolutely stunning sight of the Copenhagen Opera House. 14 Storeys high. The remainder of them? They're under the ground level. The roof is the size (area) of two football (Soccer) pitches. An amazing addition to the City. I really liked Copenhagen - it was great to walk around and see it and the spires everywhere. The Canal sightseeing trip was excellent. As before, click on the image to make it larger.

Harry Potter

A spur of the moment decision this afternoon to go off and see Harry Potter and the Half Blood Prince. It was OK and we went to a place called Bluewater. I have managed to avoid Bluewater since it opened - I thnk it is Europe's largest shopping complex (I could be wrong) . Thank goodness for google maps you can see an aerial view below.

I think I have managed not to go there for 9 years. It looked OK though and there weren't as many people there as I thought there would be.

It was actually quite nice to get out of the heat and into some air conditioned comfort.


View Larger Map

Lazy Day

It is really hot today - they say 30 C later. I am just taking it easy. I ache a bit and whilst I'm not that bad I do feel aches around my groin area - it feels quite tender and so a nice easy time is called for.

I've sat indoors for the morning and will probably go outside as the sun slides around the side of the house. Middle of the week and I hope that I will be fit enough to return to work on Monday, it certainly feels OK so far. i might even give myself a part time week next week to ease back into work.

A Beer with Flocky

That was nice. A couple of pints of beer at lunch time down at my local pub. Very nice too. Beer is OK to lubricate and irrigate the bladder. Just mustn't drink too much so as to bring on a headache of course.

It is a lovely day outside and so I have a couple of beers in the Fridge and will sit outside and enjoy a cool beer in the afternoon sunshine. This recuperation lark is nice....

Each day gets a little better

Of course that's how it should be and each day sees an improvement to the aches and pains from the operation. I'm certainly a lot better than I was last time and whilst I feel that I could get up and do something more strenuous, experience has told me to take it easy this week and do nothing to set myself back.

Because you can't see the internal injuries it doesn't mean they are not there. Mind you it doesn't mean that you shouldn't get back to normal as soon as possible either, you just have to take it slowly.

Flocky Bicep is coming over to buy me a coffee or a beer later today which I will look forward to as he is great company and bound to make me feel good. Not that I feel anything other than positive at the moment. I certainly have my sense of humour back and the depression and gloom of a few weeks ago are long behind me. Clear again means that the possibility of recurrence continues to diminish (but not go away).

This is another step in the bladder cancer journey, another tick in the box, each time you pass a milestone, a new path opens up and things become less dim, clearer and the path ahead looks more positive. You can start to look wider, higher and towards the horizon. You can begin to plan a bit more and you are less inhibited by your disability for disability it is. Physically and mentally.

Looking forward to seeing Flocky later today.

Boiling up a bit

Not sure what this is - it feels like after the BCGs I had sometimes. If I eat I get really hot straight afterwards and I'm boiling hot now too. I know it is reasonably warm outside but I've felt quite hot since I've come back and have been sleeping with a fan switched on blowing on me for two or three nights now.

Other than that I'm a bit tender and ache a fair amount around my stomach and groin area. It is still a little stingy to urinate but nowhere near the stream of fire of the past.

Getting used to sitting around and attempting to not strain myself is fun. Day time TV is rubbish and perhaps tomorrow I will spend a little time taking myself for short walks to ease the boredom.

The Amazing Rock Church - Helsinki

How about this Church, carved out of the bed rock itself. Quite modern but a most wonderful roof dome above. Click on the images to make them larger and see the details.

Continued progress

I have the usual aches and pains including, now, my arm where they probably pulled me about a bit.

The annoying thing is that I really can't get about or do too much or I risk knocking off the scabs and starting myself bleeding and having to have more time off.

So I am sat around here just taking it easy - I suppose there could be worse things to do?

I'm Not Dead Yet

Those who know me and my sense of humour will be pleased to note that I wore my Monty Python "I'm Not Dead Yet!" Tee Shirt the morning after my operation much to the amusement of some of the medical staff.

I have to say one Doctor gave it a double take and actually walked back in. "It works on so many levels" I told him. And that it does.

I'm not dead yet, I'm very much alive and the news keeps getting better and better.

I learnt tonight that I may have to continue to have these full cystoscopies for the rest of my life but at varying frequencies although one authority recommends them yearly for the rest of life for high grade patients such as my case. I suppose if it means having those and staying alive most of us would come around to that way of thinking. But again, advances in medical knowledge may mean that it will change over time anyway. Who knows, I'm just glad that I'm still here 3 years after I thought I wouldn't be and I'm more upbeat after this operation than I have been in a while.

Anyway, I made my little statement and kept my sense of humour and as someone told me after they rang a few hours after I got out - I was still laughing and joking even though I felt rough. It's good medicine, you should try it sometime!

*** Scar Wars VII - Bladdered & Bruised ***

Scar Wars VII

In a Galaxy far, far away
Our hero Dave-Sky-Nando* has to endure another trial by cystoscope.

Darth Urologist and her team have a plan to flypast the potential moon (don’t drop those pants Dave) to the planet Bl’dar and entering via a narrow well guarded pipe gain access to the inner lining and there search for mutant and militant cells of insurgents of the Atypia, Precancer and Cancerous tribes.

Any cells of mass destruction were to be treated to shock and awe tactics of the allied NHS forces.

The only way to mount this attack and fly the cystoscope through the narrow and tortuous passage is during sleep induced by her evil henchman Darth Anaesthetist. Our hero, overcome by mind bending drugs and sleep inducing chemicals is overpowered once more and the Empire does its worst.....

Dave-Sky-Nando, Jedi Master, Cancer Survivor and all around good guy, entered the concrete and glass citadel and the ward that is the pre-theatre preparation centre. He was pleased to observe that at last, the old surgical operating gowns “for Hospital use only” which – let’s face it are not a fashion statement, aren’t big or clever and didn’t exactly fasten properly leaving the patient to “moon” those within eye shot of the wearer had finally been consigned to the incinerator. The new, rather tasteful gowns are two tone blue, that tie up properly and overlap sufficiently so as not to leave the rear exposed unless you want to wear them that way.

I must be getting used to it as blood pressure and heart rate were high but not out of bounds like normal. An MP3 player with classical and easy listening music assisted the 3 hours between admission and being wheeled to theatre to go reasonably quickly.

The ritual of going through your details many times to ensure they have the right person and the other various checks are undertaken at this time:

• False Legs or limbs?
• Metal work in body?
• Jewellery?
• Loose teeth, crowns, caps?
• Mobile phone, hidden camera?
• Picture of the Queen, comic or other publication?
• Sharp wit?
• Uncut toenails?
• Aircraft carrier, space station?
• Criminal record (Mcfly, Robbie Williams etc)?
• Machine gun, IED, tank?
• Any drugs, cigarettes or alcohol?
• Any scissors, water, lipstick, packed lunch or other dangerous stuff you can’t take onto aircraft?
  

Once you have convinced them that there is just you under the operating gown they finally leave you alone after you have signed your consent form.

This time and probably for the first time, I let things just happen as it is going to happen at their speed and not mine, I can’t influence anything including their schedule and the way they do things at the Hospital. I see my consultant who has a quick look at the notes and assures me as the anaesthetist checks me over that it is the usual inspection and do I have any questions. I don’t except that when I finally find out that the Registrar did me last time and I look into the eyes of the butcher who gave me such a rough set of biopsies then. I don’t know at that time, but I soon find out that he did me again this time. His trademark being that you end up with a catheter for his cystoscopies. A lesson from some of my Jedi friends might be in order....

Wheeled to theatre the procedure is run through again, checking who you are, if you have any contraband secreted about your person. I’m Ronnie and I’ll be preparing you. He did well and the cannula went in easy enough and the check list was mechanically run through whilst we waited for the theatre to become empty and for the anaesthetist to come in and deal with.

RU1?

RU12?

IM1 n U?

IM12,

U2?

Stupid Droids :-)

A guy who looked like Yoda tipped up and he was the head anaesthetist – I had met the junior who was also there. “”Sleep dreams sweet put you this will” said one, the other added “holidays nice you think now of”. “Ouch” I said as he started doing something nasty with the back of my hand where the cannula was and I could feel quite sharp pains in the vein there. They then stuck a mask on which was a first and so a combination of things eventually saw me off to sleep.

The next thing I remember was waking up, oxygen mask on and being really pissed off that there was a catheter in me again. It makes you feel as if you want to urinate all the time but can’t. It is annoying when before you haven’t had one and then you wake up and find that they’ve pulled you around enough for a second time to do it again when before it hadn’t happened. You also know that you aren’t going home that night like they told you – many times before - that you would. I was already pretty much sure that I’d be in overnight as it was an afternoon slot.

Two hours after going down to theatre, I was in a ward, without my belongings which were somewhere else as I wasn’t in urology where I should have been but another surgical ward. At least it wasn’t the one I was in last December which really was the ward from hell. Here the nurses all seemed very nice and after the two others patients I had shared the pre theatre ward appeared, our belongings turned up. Mind you, as I was all bagged up I could hardly move, another reason I hate catheter is that you are really limited in your movements. I had to wait until Mrs. F. turned up to get my stuff out of my bag especially my MP3 player.

The automatic bed was working well but again I had real difficulty trying to adjust my posture as I had this bloody tube hanging out of me.

It was on return to the ward that the full horror of the next 15 hours or so became blindingly apparent to me. The chap next door to me was obviously struggling. He wasn’t a urology patient but had just had a violent reaction to morphine and wasn’t allowed to eat or drink. However, he had what I can only describe as tourette’s syndrome. Up to 4 or 5 times a minute for all his waking hours he would be moaning, groaning, sighing, ooowwing, arrring, coughing, spluttering and so on. Now the nurses realised and tried their hardest to sort it out and tried medication etc. However, on and on it went. I used my MP3 player to best effect that I could without making a nuisance of myself and finally at 2 am he finally fell silent. I managed to lie on my side, deaf ear up, and get a few hours sleep. At least at about 4:30 when he started again I was sufficiently with it to turn on my MP3 player and try listening to that. I must note that my MP3 player gave up the ghost at about 9am and so if there is a next time I ought to take both players as this one needs a USB port to recharge it.

At 5:30 I had my vital signs done and good grief, 139 over 89 and 86 heart rate – amazing almost normal for me when at home where I try and keep 130 over 90 as a maximum. They then took out the Catheter which was a relief but it was a large catheter not the small one I had last time so I felt quite sore. I had been bashing the water back since 4:30 and so was ready to start to show them 3 clear urinations for which they leave a bottle. I was able to do two before breakfast and one afterwards. However it took over 1 ½ hours between sorting that out and actually getting discharged from the Hospital. I had to slightly force the issue but I was pleased to get out and get home.

The best news of all really is that it all looks clear, no red patches or anything else unusual they still took a full range of biopsies though. The lab reports I hope fully support that and even more than that I hope that this really is the last time I have to go through these full biopsies and cystoscopy again. Mind you, I thought that the last time until I saw my consultant. They also said they wanted me to do more BCG but then changed their minds. I’ll find out in a few weeks when I see my consultant.

There’s a bit of a mess where the cannula went this time and I am a bit tender today – I guess they smack you full of pain killers and today is the first day that bruises are coming out and that I am actually feeling sore in all the places you really don’t enjoy being sore in.

This time I knew the drill and what was expected of me and in both pre-assessment and the main operation itself, I expected things to go at their pace and not how I wanted them to, I drank plenty of water before arriving at the Hospital and all the time (when I was allowed to) which meant passing the tests and irrigating the bladder was assured. I was still slightly put out that they managed to end up sticking a catheter in and one of the big ones too. If I never have another one it would be too soon.

In terms of how do I feel about it now – well – I am still taking in the fact that it is clear and I am not absolutely certain what that means. I mean it looked clear last time but they found atypia. But if it is clear then I think that I go onto a maintenance holding pattern. I am hoping that this is flexible cystoscopies but there is a nagging doubt in the back of my mind that thinks it may mean I have to continue to have these full versions for many years but with greater periods between each one.

My continued thanks to my family and friends both online and offline who continue to look out for me and send me best wishes and prayers.
I hope that there won’t be a Scar Wars VIII.

*A creation of Steve Kelley Inc. :-)

Bath and Bed

See if I can soothe away these aches and pains where they throw you around in the operating theatre.

All good fun but my back and groin area hurt as do my arms which they no doubt shoved somewhere. Where the cannula has come out looks a right mess too. Mind you, not as bad as the last time - at least the staff knew what they were doing and were pleasant and civil.

A good night's rest without the tourettes wittering of the guy in the bed adjacent to me tonight thank goodness.

Home

Tired, slightly sore, did I say tired :-)

However, after all of that, little sleep, catheterised (again) and delays getting home the upshot is that things look good inside Mr. Bladder and they still took biopsies and still pulled me around a lot. However, I am comforted by "We don't want to second guess the lab results but it looked clear" will certainly be something to hold onto until the out patients appointment in 2 or 3 weeks time.

Oh yes - and I'm tired - Scar Wars VII will explain all :-)

Another hot one

Another day likely to reach 27 C and the hospital will be like an oven. Hopefully they will have some fans around this time. It is at least air conditioned in the theatre and corridors.

Just got the MP3 player all loaded and I am now plugged into some music which is nice as that relaxes me.

Still not too bad although my blood pressure readings and heart rate are all up - what a surprise :-)!!!

I'd better go and do my packing and pretend that I want to go and get this done. At least the music is sorted out. I have a book that I can actually read without hurting my head and I just hope that I don't have to hang around there too long today / tomorrow.

Another Judgement Day

Arrives and I have got up early, had a shower, had my light breakfast and I am now on water up until 11 when I will head off for the Hospital for my 11:30 appointment.

A little churning in my stomach, a few nerves of course but not bad. This time tomorrow it will all be over and I then have to wait for the outcome. I might get a progress report based on the visual. I want to hear that everything looks alright of course. I'm not sure how I would feel if it were a recurrence, I'd have to take that and think about it.

I'm loading music to my MP3 and I have decided not to have any of the stuff I had when I went in the first and second times as when that happened I had cancer and of course I don't now. There are a series of songs that I associate with that time and whilst I like those songs they do make me feel quite strange these days. So searching for other sounds to listen to. Plenty of classical and less rock and roll.

It is just 3 hours away until I go in and I haven't packed my bag and I'm going to leave it so I have things to do in the next few hours. I'm going into my quiet, lock me away, don't talk to me mode right now and I lock myself down into myself and become quite monosyllabic in responses as I'm just not feeling like entering into a conversation. I'm sure that outwardly I will be pleasant enough but in reality I am just shutting myself down and keeping within myself.

Weighing in with the NHS debate

Interesting the debate over our NHS in the USA. It appears that, as in every argument, the lobbyists have been hard at work and fact and fiction abound. The report I just saw was meant to be representative and yet it portrayed those interviewed as just plain bonkers. I'm sure the editor felt that it was in our interests to see these poor confused Americans who had no real idea of what our system was really like and quoting spurious figures as facts about death rates. If they were true none of us would be left on our little island.

Sure the NHS has problems but no one needs to fund insurance and everyone can have treatment. There may be some issues with how it has evolved and inefficiencies and costs and budgets are all over the place, it doesn't mean that people die or that it is somehow third rate. What I'd suggest everyone does is look at the UK and other European systems and see how they work. Some of the French Hospitals are fantastic. The Scandinavian countries also have an incredible record in this area.

The argument shouldn't be about whether you want an NHS in the US it should be whether the way it provides equality for all can be used as a model. If you have ever read Steve Kelley's blog you will see that there are fundamental differences in the way healthcare is delivered and in the US there is more choice and things are just massively different. However, we both survived and we are both on different ways of being treated. None of us is saying which treatment is the best as the results are the same and despite my pointing out the issues that I have with the system, it doesn't mean, as some were stating on the TV that there are massive problems at a grass roots level.

Anyway, as I'm about to go into hospital today it was perhaps going to be on my mind. I'd just wish someone would deploy some facts to the US citizens so they had accurate information to base their decisions on. It appears that those who have most to lose are providing only one type of bullet and the opportunity to have a balanced argument cannot happen with only part of the story provided for the debate.

I suppose I ought to get to bed

It is after all 30 minutes past midnight. I just feel asleep downstairs and came up here after a nice meal out and a few (not many) drinks. Just about to turn in and I must be up early to have something to eat before 7:30 I can then get myself ready for my 11:30 appointment.

Feeling OK, quite mellow about things really. I'm quite impressed that I am quite so chilled about it this time. I just hope that it lasts and I look forward to getting this out of the way as soon as possible.

Good night.

An evening out to distract me

Just what I need a good evening out with the family and celebrating Ls 16th birthday. I will eat well, have a few drinks, sleep well and be ready for tomorrow. I am also distracting myself loading up my MP3 player and pottering around getting ready tomorrow.

Not too worried about it really this time. I know the score, I've done it before. Worrying isn't going to help me and I'm back into the right frame of mind.

It looks like all of the BC warriors are going to find out their fate in the next few weeks. HK is clear - brilliant news and has three low dose BCGs to contend with. Steve is due up for his scope poke and peek in about 3 weeks time.

Anyway, it looks as if we will be out of here in 20 minutes or so and I had better go and get ready - or as ready as I will ever be. The Bank of Dad and my credit cards are all I need :-)