*** 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 :-)

Last hours at work

Are dragging by. I've a few things left to do and I am reliant on others to do their bit to release mine. So struggling along with 5 minutes works to do in the next hour and a bit!

I'm still reasonably positive about tomorrow. I know it isn't going to be great but at least I know what is coming and at least in a few weeks I'll know if everything has been successful. I was amazed to hear that a friend of mine is still having the occasional full set of biopsies. He has been receiving treatment for 10 or more years and is on the "old" regime.

Here's hoping that things get moving in the next few minutes or else I will be bored stupid. I also want to get packed up here so I can get home and take L and the family out for a meal tonight. That will take my mind off of tomorrow.

Attitude

My attitude has definitely changed about this particular operation. It IS different to the last one. The last one was to make sure that the maintenance had done its thing and that there was no recurrence. That was 8 months ago and now this one is to make sure that there is no recurrence as I haven't had any treatments since September of last year (or thereabouts), almost a year without the BCGs.

So my expectations are much different to the previous which looked at how treatment had gone. This looks at how not treating me has gone. We now see if leaving things to their own devices has actually left my bladder - clear or not? If this is clear then we cross another bridge, change our roller coaster ride and move to a different level once again.

The whole feeling is different because I haven't just had treatment and need to see what has happened. It makes for a different approach to what you are having done and why you are having it done.

I'm hoping but not banking on this being the last one of these full operations but I do also have to realise that I did have an aggressive form and so I might have to come back for more of these operations in the future if my team and my consultant deem that necessary.

At least I am not as uptight about it as I have been - unless - of course - they turn me away - they didn't think that was likely this time as it is a quieter period.

Perhaps it is just something you come to accept after a while, it is now routine and may be for the rest of my life. You just have to get on with it and accept it. I like the fact that lots of people think I am being quite good about it all and keeping my sense of humour. The answer must always be with cancer, you have to rule it and not let it rule you.

Tomorrow is a good distraction

It is Ls 16th birthday which is very special and a milestone for her. She can now have her ears pierced with our blessing and that is lined up and I am taking the family out for a meal tomorrow night. It WILL NOT be entitled the last supper either.

I am most impressed with her finances in that she saved well over £4,500 to go on her trip to Argentina and almost all of that is money from work, paper rounds, bag packing, boot fairs and sponsored events as well as birthday and Christmas money etc.

I'm feeling quite laid back about Friday, noticeably so this time and I can't imagine why that would be. Even on Monday my blood pressure was reasonable (considering) and I wasn't quite as bad as I normally am. I'd hate to say that I am getting used to it, although I do know the ropes and I am an old hand knowing most of the Urology nurses by their first names as well as Audrey who is the pre-assessment nurse. All of them are just great.

I surprise myself with how relatively calm I am writing this and I hope that I will continue to be able to keep this level of calmness for the next few days. I doubt that I will come home on Friday but if I do I have assurances that the party will be dispersed early. I'd actually, on this occasion rather not be a party poop-er.

Mrs. F. told me that my next door neighbour isn't well again. He had a lung removed with Lung Cancer and looks as if he may have some sort of infection but he is going in for X-Rays. Fingers crossed for him.

My Open University colleagues dropped me a line - it seems many of them passed and they are arranging for a meet and a drink which I do hope I can make as I was disappointed not to complete the course. It would be nice if the Hospital actually don't beat me up and I can make it. They all sound very proud and excited about it - which they should be it was a great looking course and I just wished it could have turned out different.

Getting Ready for the Operation

I must remember to sort out my MP3 player and get myself set up with a book. Last time I wasn't expecting to be in overnight and I ended up with a catheter and an overnight stay. Depending on who performs this one and what they find when they peek inside will determine how long I am in for. I really don't want to be waking up to see myself all plumbed in to a load of bags as that will mean either they've puncture my bladder or they found tumours and cut them out.

I remain quite positive about this still. I like it that most people think that I am being very brave and good humoured about it all. I suppose I am - and I have to, there isn't really any other way of looking at it is there? You have to take it as it happens and I can't do anything about what they find inside.

I see that HK in Toronto had his Cystoscopy today so good luck to HK for a good result. It is nerve wracking and a bit like waiting to see if your lottery ticket has come up except that in this case you desperately hope it doesn't come up :-)

Liked the last one of the Gold Room? How about a Golden Roof

Click on images to make them larger:

This is the entrance to the Peterhof Palace some 40 minutes drive out of St. Petersburg on the Gulf of Finland. If you think this is amazing, wait until you see the fountains. I think I can see after just a few palaces like these why the had a bit of a revolution! Just amazing and these aren't all the fountains either, there is a whole park full of them.

Another Photo - The Gold Room in Stockholm City Hall

Adjacent to the Hall where they hold the Nobel Dinner is this wonderful room. It is made up of 19,000,000 individual mosaic tiles. The picture just cannot do it justice another place that was close to awesome. Consider how long it would take you and a team to assemble and set 19,000,000 mosaics. I have enough trouble with a 5,000 piece jigsaw :-)

Did I mention that the dreams were back?

It seems to be that the brain goes into overdrive just before an operation. I had a dreadful night's sleep last night and loads of strange dreams. None stick in my mind apart from the hanging in the woods the other day but these were just unreal things going on.

At work at the moment, just waiting to go out for a drink with friend and catch up on his news.

Contact from our on board party

It was nice that we had a nice bunch of people at our table on the cruise and one of them sent through some photos this evening so I have printed those off. Finally I get a photo of myself on holiday. The on board photographer took a few but they were pretty contrived things and not at all what I'd have liked and Mrs. F. no longer takes photos!!!

So a few of us on at our dining table and up in the night club. That's nice as at least I may have a few photos for my mother who likes that kind of thing.

It is a strange thing but I have almost completely turned myself off sentimentality now. It is most bizarre but it isn't important anymore to have photos of when I was younger or any of the history stuff that I treasured before BC. I watched a few old videos of the girls the other day and it did nothing other than upset me and whilst it was nice to see and remember those times it all seems like another world to me now. Some huge lump of my life got ripped out and thrown away when I got cancer. I hope that it is transitory and that all these things I have cluttering up the house and gathering dust - for that is what they actually do - make come back to mean something to me later on. Nostalgia not being what it used to be perhaps? :-)

When I say upset me - it actually means that I beat myself up about almost anything that I see. I wasn't a good father; I didn't spend enough time with my kids; dah de dah de dah.... You know anything to beat myself up and that, at the moment, is the way it is. If I do look back I find myself giving myself a hard time for drinking, smoking and all the other excesses of my youth and some of my adult life too. I argue with myself that this is what you do and that everyone smoked and all of this sort of thing and I blame myself for my situation and for not having achieved some sort of imaginary high ground that my mind tells me I should have done. It is a strange thing n'est pas that your brain which belongs to you actually comes out against you and beats you up with such painful thoughts and vicious accusations. My brain is far worse than any bully or masochist :-)

I'm not sure why any of this should be, it just struck me that the photos I have don't do anything for me like they used to. Almost as if the past is the past. Perhaps things have changed so much that what they old things represent isn't important anymore. If these things aren't important anymore, I still have to find what is important of course. That perhaps is the next part of the journey and one that will be made easier if the results are good after Friday's operation.

The answer I think is that I am important but I can't easily live with that. I can't easily accept that I am the centre of my own universe. My family and children are important - but they have all just proved they can go off on their own and even at a young age have planned, worked for and undertaken journeys and adventures of their own.

It goes back to the recent dreams (they have returned pre-operation - including the nasty ones) and my own review of what "value" I am now to my family unit? It is a wrestle with my own self belief and self confidence and it relates to where I am in terms of living, treatment and what has happened to me in just three years. I'm in no doubt that this is just another phase you go through when you survive BC. The old survivor syndrome and why did you spare me question?

A few days at work and then Friday beckons - I hope that my surgeon will once again be able to tell me that things look clear and that we can plan the next steps in my journey. That being the case I hope to drown my brain with beer (Thanks Homer) and start to sort my life out - it really can't be that complicated :-)

Well that was OK

I walked up and got seen as I walked in which was good. A quick new set of swabs, urine sample and it was on to having a laugh about my blood pressure which was good as I had measured before going at 131 over 85 with a heart rate of 82. They got me at 150 over 95 with heart rate of 108. But Audrey knows me and that's OK.


Doctor was great and all tests etc were OK so I go in on Friday. I was finished in less than 30 minutes. I think I ought to just get dropped off next time (if there is a next time) so that I am not quite so hot. It is a 20 minute walk at my normal speed but I did it slightly slower at 25 minutes. Even so, I was a little sweaty when I arrived.

It was a completely routine thing today. I knew exactly what to do and when to do it, the ECG machine behaved itself and I managed a couple of pints at the pub on the way home as a reward for having my blood test which, as regular readers may know, is not my favourite thing on the planet.

So all is now set for Friday. the Doctor said that I might go home straight afterwards. I said that if they managed that it would only be the second time and that the butcher who did me before meant I was catheterised overnight which had been a first. Hopefully he took note of my comments. I bet that they will let me go as it is Friday and it is about the only time with L's party that it would have been good for me to be in overnight :-)

Not long now

Do I walk up there or get a lift this time? Not sure but a slow walk may be useful. As long as I don't sprint up there and get all out of breath again! I can always walk back via the pub :-)

I just went to do the MRSA swab tests and the liquid that they suspended in has hardened so I cant get the swab into the tube!! So much for making things easier.... Doh!

Now I'm feeling a little bit deep breathy - exhaling long and hard. I don't suppose I'll ever get used to it, its just the way I am.

Further Images

This is St. Petersburg and the Church of the Spilled Blood built over the spot where Tsar Alexander was blown up by a terrorist. It is a truly remarkable place. The Photos just don't do the place justice - for some of the places the word awesome can be applied and almost made to work.... The Mosaic work inside and the stone marquetry are unbelievable.

The Countdown Begins

Not the Final Countdown I hope :-)

In a little over 4 hours I have to have my pre-assessment and Friday I have to go in late so that means an afternoon operation. Not sure a Friday is a great day to do it. One minor blessing is that L has her 16th Birthday party that day in the garden here and so at least I don't have to be around for that. Last year it was a nightmare to sort them out and get them out of the house/garden. Apparently she was none to pleased about the way I spoke to and ordered people out but then - it's my house and I don't take kindly to having to tell anyone more than three times what I expect them to do.

I'm reasonably calm at the moment however and I feel OK. Whilst I may not be looking forward to going in, I've managed to rationalise it in my mind and I suppose that I just have to accept that this has to be done to be absolutely certain that things are progressing well.

I remember being quite put out that it wasn't last time I had it done as I was certain that it was going to be the last operation and that I'd be having the flexible cystoscopy done. As it is I am having the rigid cystoscopy and so they have to knock you out for it.

I am hoping that if this is clear, the next steps will be to move onto that observation stage. At the moment they are checking because of the Atypia found last time. Better safe than sorry.

I also wonder if, because of my age, they are making sure that things are OK and also that I can probably handle yet another operation. I still can't remember how many this is - so perhaps I ought to tot them all up and stick them in some sort of league table so I can remember. Maybe I'll just do it when this lot are finished.