Tuesday, December 16, 2008

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