Spitting Feathers

Oh poo,

Now "if only" - actually before I start this - I was talking to someone years ago and (this is relevant bear with me), He reckoned that if his wife hadn't have taken the 3 or 4 minutes longer on this specific night that they would have got into the bingo hall in the queue a little earlier where the person who won the thousands of pound jackpot was because he had worked out where he thought he should be in the queue? I did try telling him that there may have been other reasons along the way why he may have been further back in the queue but there was no consoling him.

So bearing in mind my slight diversion. I got a call today offering me the mother of all contracts. If I could start in a week or so and give it a good crack for 3 months then it would probably grow into something really nice and was such a good fit, if it were a glove - oh hell you know the rest.

So as I know this guy really well and I wouldn't mess up his opportunity, all I could do was point him to a couple of potential candidates and made my excuses as it just wouldn't be possible to commit to it with all this nonsense going on. And if I had of had the operation on Monday I might at least have been given an outline of what was in store and I could have.

I'm a lot more philosophical about it than I thought I'd be - I'm not lividly angry just miffed but resigned that this sort of thing is going to happen. This is why it can be damn difficult having cancer and trying to find a job at the same time. The very last ting you want to do is let down a prospective customer.

Oh well, there will be other opportunities I suppose.

Penultimate Payslip

Yes - the penultimate payslip arrived today and that made me think. I'm guessing that I'll be able to squeeze one more of my mobile and telephone bills in with them and that will be that and I'll have to take those on.

All will change again if I end up working for them - I need to let them know, as soon as I do, what is going on with the Hospital. Unfortunately whatever had happened I'd be in some sort of quandary over what is going on. The Hospital would have taken two weeks to do the path tests and then I'd have got the news what to do next. One of those would be straightforward and I'd be able to plan out my life a bit.

Waiting to get the Blood Pressure sorted out is a real pain as it just delays everything and makes the chances of me working in May difficult to plan unless I dictate the timetable and make the Hospital revolve around me rather than vice versa. I'm not confident enough to do that yet as I'm concerned that the short delay I am on now is going to prove detrimental. Someone did say that the cancer is slow and the Doc says not to worry but even so I'd rather be being treated and monitored than have some sort of opportunity for the cancer to come back or to spread.

The e-mails from those leaving and the leaving parties are coming thick and fast now. I don't intend to have any such thing as a leaving party as there is every opportunity that I'll end back up there again looking at the way staff are hemorrhaging from the business without being pushed then they won't have sufficient people left to do the work which is of course what makes the business profitable.

Watch this space. I'm a bit sad that I'll be history three weeks on Tuesday :-(

After a Long Battle

I'm not sure what to make of phrases like:

"After a long battle"
"Faced bravely"
"Short and bravely fought battle"

And so on. Sure, these are on epitaphs but it made me wonder if you'd ever get anything other than that. I can't imagine anyone with cancer has any option other than to fight it. It isn't like a cold or flu where you can lie around and just recover. Generally Cancer requires radical things to happen, radical surgery, toxic chemicals shoved into you and things that you really don't want to know about I'm sure.

So I think everyone fights a battle. There are the physical battles - dealing with the pain, the surgery, the chemo or immunotherapy and all that is associated with the actual treatment including the tests and the diagnosis. In these cases people do things to you and you suffer. You battle with the results.

Battling may also mean you taking a stance and doing something for yourself. Otherwise you feel pretty helpless. There's got to be something you can do to improve your chances (yes I know not in all cases) but there are physical ways you can help yourself. Looking after yourself better, proper food - a balanced diet, physical exercise, these sorts of things give you the best opportunity of overcoming the physical problems and to some extent the mental problems too.

The brain I find is the most difficult area to work on as it can help or hinder progress. You do a lot of battling with your brain. It would be great if you could just focus on getting well again and positive thinking and to a point it is generally like that but it also has a negative side too. The dark thoughts and the working out of odds and so on. I think that I've been reasonably lucky in having a positive attitude. I look at what happened as the biggest wake up call possible. I'm also certain that I am probably the only person who doesn't think it is as serious as it is.

Cancer is with you all the time when youve got it - barely a day will go past when I don't think about it, get worried about something or the other. Again the brain plays tricks along the lines of if you recover from this then they'll get you with something else. Hardly rational thought but the sort of stuff you have to deal with. Every ache and pain is some other cancer coming to get you as well - less so now but early on it felt like my number was up and I was going to be "got" one way or another.

So is it a battle? Is it a fight? Of course it is - cancer works on a lot of levels and you can't let it get to you physically or mentally. I'm a firm believer in doing everything I can to support the work of my specialist and the larger team that have spent so much time getting me back to where I am today. Keeping fit, thinking fit and giving yourself the best chance are your part of the deal. No one else can do it for you. Cancer isn't something you get rid of in a few days - the fallout can last years and you are always being tested and checked so you could almost say it lasts long enough to be a war.

I'm not certain I'd like the words used at anytime to do with me. Bravery, battles, fights. When you see the words printed it reminds me of defeat. I mean does nobody win out of this? Doesn't it mean you lost if words are used like this (I don't think it does just being provocative).

I'm not sure whether I've come to a conclusion on this or not. I'd not like to be remembered as battling, fighting, brave or any similar thing. I'd far rather be remembered for something else - although to be honest I haven't got a clue what exactly that would be :-)

Anyway, have a think about those words, perhaps they are printed for the living and not for the person who died?

Managed to get through the drudgery

It was a long old day doing mundane things, filling in a large spreadsheet and totalling figures, finishing off a reorganisation of my office and generally tidying up those odds and ends that get left. The odd signature, the renewal of a subscription and all those sorts of things. I might just clear all of that in the next few days if I can just keep my discipline and work through it. I am too easily distracted these days.

Confirmed Date for 24 hour blood pressure monitoring

I don't know if I said this earlier but now the date is the 30th March - tomorrow week to get wired up for 24 hours and get constant monitoring of my blood pressure. At least that is better than the 19th April some 4 weeks away!

I hope that somewhere along the line they can get this sorted out and make a decision one way or the other about it. I really don't fancy taking these pills to reduce my blood pressure and certainly anything to do with kidneys and that really (I imagine) should be avoided considering what your kidneys are connected to.

It will be interesting to see what the results are.

Rabbit Food

Yes - salad for lunch - I am being very good - I've not touched a bit of cheese or processed meat this week and the bread has been the stuff made with 1/2 the quantity of salt and using lo-salt as well. The biggest difficulty is getting from 5 fruit and veg a day to 9 although the salad itself meant that I was able to do 5 of the 9 already. You can't have double portions of one and call it two portions of your 9 each has to be different.

I've started not to notice the lack of salt and the food tastes OK without it now. I was expecting it to take many weeks but it appears to be - what - 5 or 6 days? I am hoping that I will get some good results from all this exercise and eating properly. Whilst I can't see a huge change in waistline yet (and really it should be gradual not sudden) I am feeling a lot fitter and I do feel remarkably well. I could get into my suit yesterday which was a big bonus so I must have lost a fair bit already but I haven't been measuring until this week.

Back to reality

Exercises, diet, work.

Looking at the pile of stuff to finish it looks like it is going to be a long and boring day. I shall just have to blitz my way through it. Even curiouser is that I still keep thinking that I should be working when actually I'm sitting out my redundancy. I keep my eye on the laptop to see if any e-mails come through but the PCs is on but there's no one in. There is a certain amount of guilt I suppose but I really shouldn't complain as I got three months notice.

Now what pile of disinterest shall I start on first :-)

Nigerian Scam

So I got an e-mail tonight from a poor bloke who has been diagnosed with cancer and wants to share his millions with me.

Fair enough. Trouble is - I just told said joker where to get off and used particularly unsavoury language too. I hope my ISP doesn't ban me for double use of the "F" word and other such stuff.

Honestly these sickos - just let me have ten minutes with one of them with my trusty baseball bat and I'll show you one less con artist.

If people weren't so greedy and downright gullible none of this would happen in the first place. Do you realise that there is up to a 5% take up on Spam mail? I rest my case - a lot of people really do deserve what they get.

Like those lottery winners who never bought a ticket yet miraculously THEIR name came up in a draw and the lottery people guessed that your e-mail was the one you got the message on and you fell for it.

Call me an old cynic but - honestly - it just doesn't compute and yet these people happily go and get suckered in all for some stupid return. Frankly they deserve what they get...

The Diet is Shot but

What a great evening I have had - hundreds of people assembled together for an evening out and because I didn't get the Op I could go to this. I'm so glad I did. There were some great people there some who didn't know about my condition but those who did - well it amazed me. They walked the full length of the room to come and see how I was.

I am so pleased that they did that - honestly. It is so nice to see someone recognise you, make their excuses to whom they are with and come straight over and see you.

I have had a lovely evening and it was made special by those who just came and said hello and those who listened to me wittering on about all my troubles. They serve so much those who listen.

Oh and by the way

You get your Prostate checked when you have the flexible cystoscopy (or I did). They cannot do a PSA (prostate specific antigen) because when you have BCG treatment the readings go through the roof.

Of course the other reason they do this is how close the bladder and prostate are so also a good reason to be extra cautious it is only a very short distance for the cancer to metastasis to so you can imagine that it needs to be checked.

The DRE (digital rectal examination) or "finger up arse" as my mate calls it. Isn't that bad. Considering what they had just shoved up the other opening a finger up my bum was nothing believe me. But really it didn't hurt nor did it last long either - all very quick and over and done with in seconds.

The DRE is also pretty quick for diagnosis too. Anyway for those of us with bladder cancer it is part of the territory and rightly so but for everyone else do start to think about getting yourself checked out even if it is a PSA on your next blood test - just ask them to tick the PSA box. At least you'll know.

Ladies - you have nothing to worry about of course :-)

Prostate

I was annoyed when I heard Hugh Grant saying on Top Gear how much his DRE Prostate examination hurt him. Thanks Hugh, how many people have you put off getting checked? Actually, it doesn't hurt and so it may be a little disturbing or slightly embarrassing to have done but as Prostate Cancer is overtaking Lung Cancer to be the most commonly diagnosed cancer in men in the UK perhaps it would have made sense for him to have thought about the cheap laughs and actually got it home that 10,000 men in the UK die of Prostate Cancer each year - that is one an hour. 32,000 are diagnosed with it.

The good news is that on diagnosis they can do something about it and if you are under treatment you are more likely not to die of this at all.

Cancer isn't funny and men are notoriously bad patients and don't go and get checked - the last thing they need is someone telling them how bad it is when it isn't and it may well save your life. There is always the PSA blood test as well so it just annoys me that for the want of a bit of education people could be diagnosed and treated.

More information is available here

Don;t put stuff off like this - Whilst it took me a few days to convince myself I wasn't well, the best thing I ever did was to get to see the doctor fast.

Whoa - not yogurt as well

I was about to try some cereal with yogurt on this morning and I thought - check the pack...

Blimey - a small pot contains 0.1g of sodium which of course equates to 0.25g of salt. Has nothing escaped - I suppose it is used as a preservative or taste enhancer.

Needless to say I didn't have that on my cereal. It just stuns me how much salt you find and in the most unusual foodstuffs.

Keep your eyes open it is everywhere :-) I sound paranoid now don't I?

Whew - Exercise Buzz

Now I haven't experienced this for years - in fact when I used to exercise regularly and play badminton and squash. I'd play for an hour or more and there would be this real buzz throughout your body and you'd feel great. In those days I could do exercise and then go into the bar and have 4 pints of beer and smoke away quite happily! I imagine that really helped :-)

Anyway - today I did my 30 minutes but this time I used two other programmes I hadn't before, one where you dial in a maximum heart pulse rate and the computer thingy sets the resistance to keep you as near to that for 10 minutes. The second was 3 peaks in 10 minutes but starts much higher on resistance than the one I tend to use most of the time. That was really good and I noticed on all of the that my distance is increasing and so are the number of calories being burnt off. So after this not only did I feel great but also it was as if I could easily carry on for another half an hour so I'm feeling quite fit - which is pleasing. I'll be pleased to see what happens over the next few weeks with this.

Of course today I'll need all the calories burnt off I can as I am out tonight for a meal and there will be wine and cheese and all sorts of stuff I really shouldn't have - I shall try - very hard to be good and only eat small portions. I don't want to undo the good work but.....

The Fear of a Relapse

It is one of those things that you cannot contemplate unless it has happened to you.

To go to the toilet and just see a stream of blood coming out and into the pan is so utterly repugnant. It shakes you to your core and also you get occasional bits like small clots firing out too. Then after three or four weeks they repaired that although there was still a bit of blood and bits it went away. The relief is palpable - believe me. Additionally there is a mild almost background feeling like a very distant stinging goes with this - like very mild cystitis. That goes too I am pleased to say.

Later, during the treatment, I'd get this again but only on the night of the treatment and perhaps a little the next morning. I'd been warned and prepared for it. It was a different feeling as it meant that the BCG was doing what it should and (frankly) it was bits of my bladder lining getting passed out of the system. I also knew it was going to be "here today and gone tomorrow" something on the initial symptoms that didn't happen it just got worse day after day.

So what is the trouble now you might ask? Well, it is that with the delay in the operation, I'm acting as if I almost expect the blood to start flowing again and there is this almost, I suppose, anticipation this slight holding of my breath and then relief when I don't pass blood. I'm thinking that this is just my brain concerned about the delay in proceedings. I'm sure that if things were time critical, knowing how quickly they dragged me in the first time they saw me, that this isn't so.

Anyway, it is just one of these things that add to the worry of waiting. Whilst I say it doesn't worry me - like stressing me out. It is a little nag at the back of my mind.

I'm beginning to realise that "Cure" is a long long way away and that I'm going to have to learn to cope with two hospitalisations a year as a minimum even if things have gone right, more if they find the treatment hasn't been successful.

I must also work out how to write things down in such a way that they are what I feel but don't lead to people thinking I am depressed. I'm a reasonably "up" sort of person most of the time and wear my heart on my sleeve (more so recently) - you'll know when I'm down and you'll know how to cheer me up. Good company not sympathy are my pick me ups.

Diet progress

I think today has gone extremely well so far. I am jotting down everything that I eat and the timings as well. It means that I can see when I last had a coffee or something to eat and it keeps me in check.

The low salt bit is also interesting and no margarine on my bread was OK - so I will be interested to see what things are like this time next week.

Take Someone With You

When you go to see the Specialist or Consultant. Not just for the car park.

I found that when I was told that I had Cancer that I hadn't really got any questions to ask about it. It was a bit of a shock, not unexpected, however, any questions I had I hadn't written down either.

So write down any questions you may have. If you get hit with bad news you may not know what to ask anyway, so ask what to do if you have questions when you get home. Whoever has come in with you may well be able to start asking questions giving you enough time to ask your own or to seek clarification on the next steps.

I was better on the second meeting and on the third but there were still some questions I missed or glossed over. As the person diagnosed - your mind is in a spin and not functioning as you'd expect it to - take someone with you and let them do some of the thinking for you.

Read the literature they give you and try not to look up some of the stuff on the Internet unless it is from reliable sources (Other NHS departments have stuff online for example). As I've said before some of the forums can be especially worrying but they are generally full of people far worse off than you are. Those who survive and get treated and cured have no reason to stay in those forums so be aware of that.

Here endeth the lesson!

Subtle Changes

I again did my three 10 minute workouts this morning on the cross trainer. Gradually the mileage done is creeping up as are the calories burnt so I must be making progress and getting stronger. I was pleased with that as there is about a 10% improvement on speed and distance and calories of course.

Having wiped out any gains made on the diet and exercise with a few beers last night, I am going to try and be sensible this week. Then I realised that I am out eating and drinking tomorrow and later in the week too. I will just have to avoid the obvious traps I suppose.

Hospital Parking

I am indebted to one of my regular readers for this LINK to an article in the Daily Telegraph and HERE to the BBC article.

I've been complaining and so has he that you have to pay and display. All very well if you know for sure that your appointment will be on time. In my limited experience of appointments, only the 6 BCG treatments were on time as they HAD to be delivered within a certain time. Now I'm not knocking the staff but the system. If I have an appointment at 2 pm and I put in an hours worth of parking that would seem appropriate. At 2:50 I'm darting around wondering if I am going to get called or not and then having to go and feed the meter. It means that if I am on my own I have to go and tell someone - if not, the other person who I have brought with me to make sure I am asking the right questions or not forgetting any, has to run out and feed the car park ticket. You know what happens next, as soon as you get up, your name is called and you can imagine the scenario of wondering if you'll get out in time or whether the £30 fixed penalty will be slapped on your motor for they have people going around all the time looking.

This is of course if you can get a car parking space at all as like many Hospitals there is less than enough space, the local supermarket has taken the majority of it and on all 6 occasions that I had BCG treatment my wife had to circulate and double park in the car park until I came out.

And as a final whinge this morning - the last part of the article about charging for bedside phones and TV is absolutely true, they want you to buy a card - minimum charge of course applies that you can't give to the bloke next door when you leave and you can only get free radio. worse than that the screen is full of adverts and "wakes up" and starts playing the adverts. Mine just gets pushed face first to the wall. They try and turn it back out but I push it firmly where it belongs. There is some spotty little kid comes around and checks the TVs and also puts them in front of yor face. You don't want to hear what I said to him.

Why Hospitals need to resort to this sort of cheap commercialism is obvious and I'm sure some minor Government official will be telling me it is for my own good. I can walk to the hospital but that may well have contributed to my high blood pressure episode last week considering that exercise raises your blood pressure.

Fighting Alone

I firmly believe that.

I fight this alone even though I have loads of support and good wishes etc. Only I know how much I am kidding myself or encouraging myself. Only I know how much I am glossing over the cracks.

I think that you need to convince yourself first that things are alright. It is pretty glib if anyone who has never had it or similar says it to you - what do they know. Words from a professional are always welcome and sympathy is great but it empathises and doesn't psyche you up for the next thing you have to face. Mind you there is also a difference between friends, family and those closer to you - mates I suppose (not sure what you'd call them - confidants perhaps).

Friends are great - they all react differently - some are so concerned that I am worried for them not vice versa :-) Such concern is really touching if not a little too much for me to handle - I like being liked but I'm not sure I like THAT much attention.

Family are strange - they are very worried despite my assurances. I spend more time telling them that I am alright and giving them the considerable benefit of my understanding of my disease. They don't like to hear all the gore and stuff so get more upset the more I try and convince them that I am alright.

Mates - tell you to shut up when you are being stupid - great - no change there then - they know the score, they feel for you, ask the questions but also bring you back to earth when you need it as well. It is really uplifting coming away from an evening with them as you feel so much better and yet you could have had the ultimate in greetings - "quick shake his hand - he could have died last year". Black comedy is also fully acceptable as is anything to do with putting people - including me - in their place. I am also not treated like something or someone special.

Finally - fighting alone, the title of this piece - is about the time you spend reflecting on what you've got, how you deal with it, the regrets, the upsides and the down, the anger, frustrations, angst, humour and depression that you get. this blog was set up to share all of that and yet, I admitted to a mate of mine tonight that the problem is I still haven't gone to the darkest side nor have I shared the inner most fears, the horror and the sheer fright of going into Hospital. I haven't explained the massive strain on the family - but believe me that is there and I haven't shared some of the extremes the other way - the flights of fancy, the miracle cures, the snake oil and the implausible. Neither have I fully explored the upside. There is something almost spiritual and uplifting, something that brings some sort of balance to life, some understanding and a level of tolerance. It also brings the dead opposite and intolerance and a speedy reversion to anger are also part of the territory. We have so much further to go on this journey - its exciting n'est pas?

I'm hoping that I can open up a bit more but I'd rather do myself damage than damage those about me so my writing has to be kept to the 80% or so I'm prepared to share. Only my mates will probably get to hear the next 10 to 15% and even then I cannot imagine that they will be comfortable or remain undisturbed by what I'd have to say.

This is one of my dark blogs but I didn't start off that way. I hope that you will understand that there are many dimensions to having this (and I imagine) any nasty illness? As one of my mates said tonight - if you read between the lines there is far more to what you are writing even more than what you say. That is of course absolutely true. Don't confuse me with the facts.

Anyway, time for bed - early hours of the morning again and I really should have been in bed and hour or more ago.

As if on cue and to prove me a crashing bore

This article from the BBC CLICK HERE

All about salt and sodium - don't forget 1g of sodium is about 2.5g of salt!! Yep - that's what I thought to.

One of those pre-made Italian sauces - you know the ones full of healthy stuff like mediterranean tomatoes, olive oil and all that stuff? Well it had 4g of salt in the jar which normally would have done 4 portions. So check that one out next time you buy one of those. 4 grammes what the hell is that all about.

Right - I'll stop boring now about sodium and salt intake you can go and see the Government web site all about it HERE.

Right About Now

I should have been having or just had my operation if I had been allowed to go in. Instead I am stuck here looking at the first of the snow falling and getting on with some work that I should have done a few weeks ago. At least I have been released a bit and can get on with some of the backlog I have.

It is surprising quite how much preparing mentally and physically takes out of you and the major impact is on day to day work and general lack of concentration and applying yourself.

I'd hardly get any work done as I'd be easily distracted and also interrupts would completely knock me off my stride (this doesn't happen normally).

The list of things to do then gets longer and it is then back to the old chestnut of prioritisation and that then sets you off thinking you have to much to do and not enough time left to do it. Anyway, that weight has lifted off me and I got stacks done this morning and with a bit of luck I'll be able to sort out the vast majority of my stacked up work this week.

I'm not sure if behind each dark cloud there is a silver lining is the apt phrase here and now but it is all I can think of.

Catch 22

Do you remember the book or the film?

Well it is a bit like my present situation I think. I go into the Hospital or the Doctors and my blood pressure goes through the roof. They cannot do anything with my BP so high so they send me away and my BP normalises and then I go back again and my BP again goes through the roof again.

Apparently stress does have an impact short term on your BP but it cannot account for long term high blood pressure. So they can perhaps see why it is high on admission and the goes to normal thereafter - I remember them looking at one set of results but as I said to them they were just about to remove the Catheter and the Cannula and anyone would be a bit worried about that - now if you had taken the BP reading a few minutes afterwards then I'd have been in a state of relief.

My recent readings taken at home have not been good but a wrist monitor is apparently not accurate enough it should be an arm band one. It shows prehypertension results hovering around the 140/90 mark.

No need to worry about it at this moment I suppose as the 24 hour monitor will provide the results and I can't do much about it anyway.

I Hadn't realized

That I wouldn't be fully recovered by now. The Doc reckons that I shouldn't be so worried about the additional weight, it is easy to put on given that I had to sit on my arse for the best part of 16 to 20 weeks. I'm still healing and I've had some serious work done on me.

I'm concerned that the weight has pushed up my blood pressure and also makes other complications possible.

I worry too much apparently :-)

I am also getting the impression that just because there aren't a row of stitches across my groin area doesn't mean that the surgery was not serious.

well that told me then!

Getting Serious

The Kitchen has battle plans drawn up and blue tacked to the walls. A clipboard and pen with chart await me for anything I eat during the day. I am going for points and points make? Prizes - oh no that's some TV show. No - points mean that I can ensure that I am eating enough to keep me healthy but not too much to put on weight. Well that is the plan.

The exercise regime burns about 150 - 200 calories every morning and I need to limit my intake to less than 1800 calories. In addition I need to get down that salt intake and go from 5 fruit and veg a day to close to 9 if I can manage it.

If I can get this bit right then I should be able to steadily lose weight over a period of time and also get fitter - although I haven't felt this fit for years and years. Additionally if I can lower my blood pressure through being fitter and cutting back on salt then that should allow me to be fitter for treatment and for the ongoing fight.

Diet, Salt, Exercise etc

I am getting to be a bit of a bore on this now but I worked out that I am overweight but not obese and so I need to lose weight. I knew that but I now know what my target weight drop is. I need to lose about 20Kg to get myself back to where I should be. 10 or so would get me back where I was I think before all of this happened.

Ideally, if I can get a good run at it then 25 to 30 Kg would make me very happy indeed although not back to my fighting weight of about 65Kg - but then I was 19 and as fit as anything in those days.

I have downloaded a chart that I shall put on the wall to help me get my weight down and to maintain that as well.

I am hoping that I will be able to get weight, blood pressure etc down to reasonable levels and then to use my new found fitness to help recovery from the bladder cancer - for example being fitter will help me when it comes to the treatment and also to hasten my recovery from that.

I know the theory - now to put it into practice. Oh yes - coffee is OK you just mustn't do anything to excess.

Found some of my early notes

On bladder cancer. After I had the second operation and was told I had CIS - Carcinoma in Situ I foolishly mumbled that "that was good". Well, after having a couple of tumours cut out you'd have thought that having CIS - which in most cases such as skin cancer is relatively easily treated, should be great.

The notes I made at the time are:

• Aggressive disease (worse than a tumour)
• poorly defined
• difficult to gauge
• Often recurrences (can be 3 or 4 per year - tumours that is I think)
• 3 monthly checks
• If past 1 year and no recurrence then you halve your chance of recurrence.

I then wrote BCG in the best cases is 60-80% effective. I'm young I hope so.


I am so disappointed at not being able to find out about this for perhaps another few months. I know I have to get whatever is wrong with me now sorted first. Perhaps I should have popped a few Valium before I went in to the Hospital - they are good, they could of cut my arm off and I'd have helped them :-)

I also found my treatment notes that I kept when I had the BCG treatment. I don't think I will share them on here - they are pretty boring and I think I covered most of the things I learnt at the time. I might just type them up and present them the next time I see the urology nurses so they can add them to my file.

The Grand Prix was good - the atmosphere not so

I enjoyed watching the Grand Prix - the first of the season and although a tiny bit predictable it looks as if things could be close in the future so that will be good. It was getting a bit boring a few years ago. Let's face it, it was terrible and they needed to do something. I also like Moto GP and Motorbike racing as that really is close stuff.

Mind you, for some reason I was in the bad books later on. Don't ask me, I'm a bloke and I don't pick up on these sorts of things. They - the wife and apprentice human beings had been out shopping. I had said that I didn't want to go (so perhaps that) but that isn't unusual. There are only so many fashion shops that I can get dragged around without my temper flaring.

So - obviously some sort of thing I did wrong, which when questioned gets the answer that it "DOESN'T MATTER!!!!" - and so using that information I just dig myself deeper and deeper into it as I explain that "you told me that it didn't matter".

Anyway, it is late, all is quiet and they are all out tomorrow. I retired to my office at 9 pm to get out of the way!

Vacation / Holiday

On the basis that I haven't been on holiday since the summer of 2005 and every chance of getting away at half-term disappeared what are the chances of getting away at Easter?

As usual, I have some commitments some that I can probably delegate but others that I cannot. The Apprentice Human Beings are planning something for a birthday party and something else as well involving sleep overs (which rarely involve sleep), shopping and cinema visits.

It is not looking good at all. I am wondering whether to just take myself off somewhere and please myself as at least I can make a decision even if the rest of my family cannot.

I must remember that next time

I haven't tried a couple of the programmes on the exercise machine - one is a long burn one and the other is a steadily increasing resistance. I tried that one today - I was absolutely knackered after 10 minutes. It took the machine to maximum resistance and held that for about 3 minutes. I'm glad I only did the 10 minute programme. I went back onto my normal three peaks in 10 minutes one twice afterwards.

Whilst it was a hard workout I feel alright afterwards so I might mix this one in every other time from now on.

Well, today I thought that I was going to be getting ready for going into Hospital. Obviously that isn't going to happen and so I am going to spend the day watching out for the F1 Grand Prix and re-planning the next couple of weeks.

The New Food

Horrified was the verdict. So many food stuffs are laden with salt. It took ages to do the shopping and they returned with lots of healthy looking stuff including some nice fish. Mind you I'll have to prepare that as the heads are still on? Crazy, it never worried me but obviously they don't like it.

Certainly plenty of things to try out and the revelation of the bunch has been making fruit smoothies using some frozen berries - very nice.

I've had one coffee so far today which isn't bad and I've kept my intake of salt down to about 1.0g today - I'll be cooking the fish tonight and so I'd expect to perhaps do 3.0g in total for today. I'm happy that I'm getting that level down to somewhere reasonable. I'm just amazed quite how much I ate before.

Oh yes - one of my favourite things is back on - F1 car racing so that is me settled for tomorrow watching that. Nice.

Tasting the difference

What a difference no salt makes to things. I fired up the soup I made yesterday and added some lemon juice and a dash of worcestershire sauce - you have to be careful there is salt in that too. It still tasted bland and yet I know it is full of good stuff.

The low salt bread we made was OK with the soup but I was just so surprised how bland the food tasted. Apparently after a few weeks this doesn't happen as you become used to less salt.

I can imagine tomorrow's roast meal will be interesting as I won't have any salt on the potatoes, no gravy and nothing on the veg either. At times like this you wonder whether it is worth all the bother but I am going to stick to this as far as I am able to. Meals out may be a struggle but again, you can choose not to add salt at the table - it all depends if the chef has added any at cooking time.

Stepped up the Exercises

The 30 minutes a day seems to be the right amount now. The required state of out of breath, warm to sweating is easily achieved and I feel good a little time afterwards.

It isn't going to be possible every day but if I can do it whenever I am at home then I should be OK. If I have to go away I'll have to go out for walks or something.

Instead of a 30 minute programme on the trainer it looks better to do 3 x 10 minute programmes as you get more changes in resistance (3 or 4 in 10 minutes as opposed to 3 or 4 in 30 minutes) so you get a better and more interesting workout.

Things don't taste the same

I decided that I would make myself some soup. Vegetables, water, pepper (NO SALT) some herbs and some pulses.

The strangest thing is that as soon as I tasted it - it needed salt to make it work. Tomorrow should be interesting, shopping for alternatives and herbs and other things to make food taste flavoursome with out the salt bit.

I eventually had just the one cup of coffee after my no salt soup :-) and I've eaten plenty of fruit and I don't feel the least bit like going out and swapping the car for a Citroen 2CV or some such so I should be alright.

I'm wondering whether to go the whole way on this and go and live in the woods and dye my hair blue and get a good few body piercings and a couple of tasteful tattoos.

Yee Gods - Salt again

I've been through the cupboard and fridge checking out the amount of salt / Sodium in foods.

What a shock. My healthy tomato juice, baked beans, sardines, cheese, marmite (you don't want to know - no really), soup, cook in sauces and so on. Just go and look for yourself. Remember that the recommended daily allowance is about 6g for adults and 3g for children and then add it together it will shock you quite how much of this stuff you eat.

Check your bread, your bread spread and then what you put in it like Ham or Cheese and you will be amazed. I was. I reckon on most days I would have gone over 6g by lunchtime just on cereals and sandwiches.

So far today has gone quite well. I've managed to not have any coffee and I've kept my salt intake down to about 2g so far. Evening meal is yet to come and so I'll probably double that but, it is probably fair to say that for the first time in years my salt intake will be lower than the 6g recommended.

It is a concern that this is normal in most of the everyday foodstuffs we have lying around the house.

Nice Lunch

Phew

The sun was out and we sat outside for the first time this year enjoying the Spring sunshine. A good couple of beers (lord alone knows what that did to my Blood Pressure!) but I didn't have any food there. I had some of the home made bread before leaving with some Tuna and some low fat cheese. OK - I didn't avoid salt but just had to do the best I could.

I got a call from the Doc. April 19th was the earliest they could do for the recording equipment. He "had words" and the 30th March is now the date. So another 2 weeks before they can even begin to see what might be wrong and he has only just received my blood test results so he hasn't looked at those yet. I'll have to wear some get up for the weekend and then they can decide whether or not I am alive or dead and so do something about it.

I am resigned to this delay now and perhaps there is something else wrong. As usual it moves at its own pace and not mine.

Anyway, the beer and company were good so that is what really matters.

Today without salt or coffee

Thank goodness for the bread maker - we made a loaf last night with half the amount of salt in it and I had some of that this morning. I have had no coffee at all - I've decided to see if I can cut that down to reasonable amounts. I'm thinking that about 10 cups a day isn't so good for you but that is instant. I don't do the 6 or so double espressos a day anymore now. So I will probably just have the odd cup of real coffee every now and then. So far I haven't bitten anyone's ear off or behaved badly :-)

The next thing to work on is limiting things like cheese and processed meats and I am going to have to make my own soups as the ones in tins, packets and cup-a-soups all contain relatively high amounts of salt as well. If you think making soup is easy then go and have a look at how much salt is in a stock cube. This isn't going to be an easy trip at all.

Additionally, alcohol taken in moderation can help blood pressure. OK, that is fine - I can do that. This week has been a bad one though - I realise that by tonight I would have been out every day for a beer! That was a bit startling but then this week I pulled all the appointments into so that I'd take my mind off of next week and going in.

Which reminds me the Doctor said he'd ring yesterday and it is half way through today and he still hasn't rung me.

Raising the bar

I decided that today would be a good day to up the exercises from 20 minutes a day to 30. The only thing I have noticed is that the computer thingy on the cross trainer doesn't give you more peaks and troughs on the exercises the more time you put in so after 10 minutes I went back to doing 2 more 10 minutes sections each one peaking 3 times in the 10 minutes. It is a much better workout - or appears to be - than the long version of the same programme.

Now I have got to see whether I can keep this going - it always seems to be that you lose some part of your day. What I need to do is make it part of my routine and not look at it as a time stealer.

I often look at people who have just been out for a run or after doing some work down the gym and when they are all red faced and barely able to breathe wonder whether this exercise stuff really does do you good -everyone i see always looks unfit and totally knackered at the end of it :-)

Salt

I started looking up about hypertension and whilst I know that most of my BP readings (the ones that I do myself) are prehypertension or normal it helps to think about these sort of things.

I was pretty much horrified at how much salt I have a day. Not from me sprinkiling it on but from the actual food itself. Bread and some cereals being very high and even things like tinned fish (Tuna) and cheese. These are all staples of my diet so I've set myself a mission to see if I can reduce the amount of salt I eat now.

I've already changed my lifestyle to some extent and tend to eat a lot more fruit and veg so this is only extending that. The other thing is to get some of this weight off which - happily I appear to be doing as I fitted into my suit comfortably last night and I didn't three weeks ago so that is something. I now need to ramp up my exercises as well.

A lot calmer today

I've now got over the bitter disappointment of not going in on Monday to have this operation. You can probably understand that what I really want to know is whether the treatment has worked or not. 3 months waiting was bad enough - another 2 months (could be) just adds to the uncertainty of it all. I know that it is small consolation but the GP did say that it was pretty effective stuff but of course what happens if it hasn't worked - will I have to start all over again. Something I definitely do not savour.


Ho Hum.

No Phone Call

Doc was due to call at 9:00. Asked if I would be here at 9, checked my phone number and took my mobile too. MMmmmm. So is it no news is good news? I doubt it :-)

Busy Evening

I went to a local business club meeting which was nice. A great talk on Health and Safety and then some grub and some coffee. Got home. swapped the cars around and had a phone message and some of my friends were at my local - I almost pulled in for a beer on the way home too - how strange. So I dashed around to the pub.

Anyway - always good to see them and we had a couple of beers and a long chat which was good and let me get some more of my angst off of my chest.

Call from Docs in the morning so I suppose I ought to get to bed early to take it!

Feeling much better and a lot calmer now. What else can they throw at me?

Scar Wars IV - A Scrape in Time - Delayed

Critics are having a field day as the producers of Scar Wars IV - A Scrape in Time announced a 6 to 8 week delay in premiering this long awaited for next episode of the award winning and box office smashing Scar Wars series.

Rumours that the star of the show had been booked into Rehab were firmly rebuffed by a company spokesman. "The franchise will go on with our hero as planned". It was confirmed that he "Does do all his own stunts" this accounts for the realism and gritty dialogue :-)

The Director was not available for comment and no one would further explain the plot but it was rumoured to be something to do with a scrape in the space time continuum! The company spokesman refused to be drawn into any gossip about what the next episode would hold.

Meanwhile, fans all over the world will be disappointed to have to wait longer for this latest episode.

What a difference a day makes

This time yesterday I was quite happy to take myself off to the Hospital (first time ever I think I've gone on my own). I was even relatively calm, I listened to the MP3 on the walk over there - all good classical stuff. The rest, as they say, is history.

I even managed the blood test (What a whole armful?).

Right - move on.. Re-planning version 3 and it is only Wednesday :-)

I Still Can't Plan of course

As I now have to wait for a letter from the Hospital and the extra appointments. There was me planning stuff out for the next 6 weeks and I can't do that again as I might have to change those dates.

Knowing my luck they'll want to monitor me when I least want it. It is all out of my control again. Damn I hate that.

Health comes first but at what cost? I should stop moaning as I'm still getting paid I suppose well at least until April.

Resignation

Can't do anything about it I suppose so have to live with it. Sods up my life for the next 6 to 8 weeks and all the psyching myself up for today and next week has to be re-done.

I just want to know if I still have the cancer or not and whether I can get onto maintenance or not. Much of the anger has subsided, it wasn't directed at anyone in specifically. I think the family got a bit of it but not much - I did try and keep myself to myself a bit but occasionally bit off heads when rhetorical questions were posed!

Early night, back on the exercise bike in the morning and then re-plan and re-schedule everything. I wouldn't mind I've rescheduled so many things and apologised for not going to loads of things and now don't I look the arsehole?

Enough - go to bed.

I wouldn't want to cross me tonight

Talk about Mr. Angry. Strewth. I am fuming about today. I said to someone about it being the 13th as well.

It is the total expectation that you can drop everything for all these extra appointments and tests and goodness knows what else. No problems delay this, move that and I suppose I'm lucky as it doesn't make a lot of difference to me but imagine you were hanging on to your job or actually desperately needed a job and this happened to you.?

Drat, Drat and Double Drat

Been to the GP - Nothing to worry about - well that's OK then.

Got to have a scan thing and then take it from there. I guess when they said blood test and I went sort of white and stammered something like I just had one - they did phone the hospital and get the results.

So 6 weeks delay to the Operation but hold up - it will be Thursday before they can do anything and up to two weeks before getting a monitor thing I will have to wear for 24 hours. Lets see how quickly they can pull this one around. Remember that BP and Kidneys are linked and so what every they do there may have an affect on elsewhere.

Great

SNAFU

Go On Punk... Make My Day!

Well that didn't go quite as planned at all. BP through the roof, it came down slowly over the time but all that pushing and poking and stuff.

Upshot - 6 weeks delay. Go to GP, go directly to GP, do not pass go, do not collect £200!

Oh sh1t. I was actually swearing a bit more than that when they told me.

I actually cannot do 6 weeks so It would have to be 7 at least. The F word has been uttered all the way home from the Hospital. I was very angry to start with but I suppose if they see any risk they won't operate. The nuisance is I now have to go and get something else done and then go back and repeat this old sh1t again.

I've completely altered schedules so that I could do this and now all those short term plans have turned to pooh as well. Back to the drawing board.

In all the excitement I can't remember if I wrote 5 blogs or 6. Seeing this is the most powerful blog in the whole world and likely to blow your head clean off you have to ask yourself whether you feel lucky?

Well? Do you feel lucky punk?

Nuff said - going to go and get angry at the pub now :-)

Not Too Bad

I'm just settling down to a cup of coffee. I've done 20 minutes on the exercise bike, had a shower and just relaxing. I've checked the letter about 5 times already in case mysteriously the date or time have changed - they have not!

I'm a lot calmer than I have been leading up to this. This happens as you get near to the time and there is nothing you can do to affect the outcome so you accept it and get on with it.

Still some nerves but this is only pre-assessment and I can only guess what they are going to do based on what happened last time I went in. Scans, tests, questionnaire (I must remember to tell them about the eczema type stuff both times previous). I just hope they keep to time, that can be the most annoying thing to deal with. Of course Hospitals now make easier for you to increase your stress levels by allowing you to park on an hourly basis (for which you have the privilege of prepay) and then making you wait until just before your time is up. Then what do you do? Go and feed the meter, get a new ticket or go and have your appointment. The little twerp who thought that one up ought to be hung, drawn and quartered!

Switch off and survive

Is I think how I get through this stuff.

"It isn't actually happening to me"

I find that I go into these places numb now. I remember the scan being the most horrible thing that happened - only because when it happened and probably the trauma and post operative realisation of what I had as well.

Now, I switch off. You lose your dignity and your personality and you are wheeled in and out on the meat wagon. It's a factory and doesn't fit what I would have thought of as "care". It is a numbers game and you are in and out in double quick time and they push and pull you around and you are just so glad to get home. I feel like I have everything punched out of me after a few hours and I go with the flow and ride the roller coaster until it stops and I feel well enough to get off, I stop feeling sick and can balance again - then I can go home.

The whole thing just appears to be a patients go in one end and patients go out the other sausage factory.

Oh well, I will turn off my brain and body as I get there and turn on my human being features as I leave. At least I have a lunchtime appointment tomorrow that will cheer me up!

A touch of the dramatics

Out this evening with some good friends and brain kicks into life - saying "this could be the last time you see them". I say nothing to anyone as I deep down inside do not believe that.

I liked a later conversation about how much I loath going in. How tomorrow I am taking myself in on my own as I ought to face it myself. I've always had someone go with me. Tomorrow it will be different. I'll also take myself off on my own for the operation as well. It is something I need to do, in future I could be taking myself in and taking myself out.

Anyway, the interest was that we were talking odds. I reckoned that CIS is one of those things that is difficult to stage - hence they are doing biopsies. It is 80:20 on success of the BCG. Those are pretty good odds considering and given my age and levels of relative fitness, they are odds in my favour. If that fails, they can re-do the treatment and give you 50:50! All in all, if you were given those odds you'd take them and be pleased. So I'm feeling a little better about things but what it did highlight is the fundamental reason I'm so apprehensive. It's the lottery principle. Will I be a winner next Monday? If you had a 4 our of 5 chance would you take it? You see I'm not a gambler and the odds whilst stacked in my favour still mean that 1 in 5 times it would have failed - see my point?

It is the introvert and pessimist in me coming out. Many who know me would be very surprised to find I am quiet and in a room full of strangers more so. I over compensate for this later on. But the whole Cancer thing has been rather humbling. Suddenly I'm no longer in control.

Tomorrow I am going in for the assessment tests and I'll get through that one way or the other. After that I shall be able to work out if I can manage this on my own in the future.

Could be back at my old company again

It is strange how things move. I just had the conversation and agreed to go and do some of the stuff that I think I am good at :-)

It will allow me to get over this next period of uncertainty and also to be able to work part time which is probably what I need. The work probably wouldn't start until May which fits very nicely if I have to have maintenance - even if things are pretty bad - at least I'll have something to go for.

It just needs careful managing and ensuring that dates are managed between us.

Strange how these sorts of things happen. I'll be replacing two guys who left of their own accord rather than being made redundant. The funniest bit is that I'll probably be installing for the people I used to manage - how funny is that?

Time Stealers and Time Wasters

It is one of the problems in management that you find your time eroded. Today, I managed to get on really well whilst I was here on my own. Since that changed progress has been slow and stop start. It drives me nuts under normal circumstances - today I am just getting nowhere fast (or rather this afternoon). The to do list has actually got two tasks longer than it was this morning and whilst I've knocked over some key stuff - more remains.

Yelling at this blog may well take some time away again but it is better than getting angry in the house.

Deep breath, let me see what I can get done in the next few hours as they will all be out again soon.

I know that

Just had the letter shoved under my nose saying when to turn up tomorrow and all the details about what I should and shouldn't do, and I if I feel feint then call.

I know that, I can read! Didn't shout, didn't say much other than I knew that. Now I feel quite queasy about it.

I am managing quite well to distract myself and keep busy but occasionally it comes right back and gets me thinking and feeling bad.

3 times in 8 months - a record even for me to be in Hospital. When I was younger I managed to rack up 12 Operations in 19 years. The last 11 between the ages of 13 and 19. You can perhaps understand why I dislike Hospitals so much. It disrupted my schooling and left me with the sounds and smells of wards imprinted on my brain. At least the wards don't smell of Ether any more. I suppose that is a bonus.

1 Week to go

But who is counting? Well me for one. This time next week I'll be in bits, the clock will have slowed to a crawl, I'll be hungry and thirsty as I won't have had anything since 5 in the morning and I'll probably be on this PC playing tetris and solitaire and such things to kill time.

My MP3 player will be ready to go along with a book - I think I'll take Long Way Round by Ewan McGregor and Charley Boorman with me, it is an easy read. My case would have been packed since Sunday.

I can walk to the Hospital which will also burn up some time and some mental energy.

No doubt more fears and revelations down the week.

I was expecting a quiet week

It's the early hours of Monday morning and I have just looked at my diary/wall chart and see that I don't have a free day this week at all! Somehow I have managed to be out every day and for someone that doesn't actually have a job, I have stacks of things to do. I'm going to have to prioritise all this in the morning as I just don't know how I am going to fit it all in.

Nice to be busy I suppose?

Can you admit that

You are absolutely sh1t scared of what is coming up? I don't think you can really let it all out. There's the bloke bit - you don't show emotion. There's the family bit - you don't show that it could be worse than it is (not sure if this makes any shock situation worse or not?). The other thing is that you put on a "brave face" - it's all very British and "Stiff Upper Lip" etc.

However, I've had three months to stew over this - I should have been in on Monday so a week late sort of adds to the tension but, at the end of this really is that I am sh1t scared this time. I actually think I don't need to be. I know what is going to happen to me. I know the drill, I know how to get out of hospital quicker than the first time and I know my way around but that isn't what is getting to me. It is this:

1st Time - all a rush, emergency surgery - cut the cancer out and evaluate the problem. 2 days after diagnosis - wow what a rush!

2nd Time - in for biopsies (what should happen this time) wake to find heavy surgery and cleaning up previous work, lots of other wok and some retrograde stuff. Hurts like hell, feel like sh1t and really mauled about this time. BUT - halted the problems, reviewed the diagnosis and hey, actually better prognosis than after first go.

3rd time - is that real? Did the treatment work? Is the cancer contained? Oh please that it is (if it isn't - we really don't want to go there). What happens next? Is it serious or is it maintenance?

I feel that it is all going to be good news and I feel well although I can feel my body starting to get ready for the hurt.

If it isn't good news, I'll be devastated of course but I WILL get over it. I just haven't factored that into my life plan at the moment. If it is good news then that is great but it will still impact my life in such a way that I will need to find flexible employment.

Anyway, I think it is totally natural to be so scared and apprehensive. I bet they look at my BP readings on Tuesday and comment about them. I mean - knowing what I've got to go through and expecting me to be calm, rational and reasonable about it just isn't going to happen. You can rationalise a bit but you can't fight your emotions with logic all the time.

I draw the line at

Taking bets on the outcome of the tests. Come on guys. that is blacker than my Tee Shirt.

However, if there is still room I'd like £50 on................................

Just Plain Weird

I think that you have to acknowledge that if you know me - you'll have to come to this conclusion sooner rather than later.

My taste in films and music alone floor most. The absurdity of MY humour will get you if the former does not.

Tonight, I was considering the fate of the dinosaurs. Sat there eating their meal at their favourite restaurant (McDinos) and one turns to the others and asks whether they saw "Horizon" last night. "I mean, what are the possibilities of being wiped out by a gigantic asteroids and a caldera?"

If you thought that was funny - welcome to my world.

If you think that I should be locked up then join the others petitioning for that right now.

No I'm not going to tell you where to sign up of course. If I knew I'd sign up myself :-)

Cut Price

My friend's son is working in the urology department at the moment!

Should I take his kind offer and meet him in a lay-by and get the job done real cheap?

It's tempting n'est pas? Drive out for the evening. Park up in some country lane, Headlights flash in synchronisation with theirs. A quick move to park cars next door to each other. A movement of passengers from one car to the other (and equipment). Windows steamed up and suspension creaking.

Just as you are about to get your cheap cystoscopy, a rap on the window from the local constabulary and you end up being warned for indecent exposure - no matter that you were halfway through some complicated medical procedure! Damn....

Wag tells me that they charge for Catheterisation by the inch. For me they'll make an exception and do it by the millimetre. I don't know whether to be insulted or not?

Interesting e-mail

I got an e-mail or rather a private message which was rather nice - someone I don't know wishing me well. It puts a little smile on your face when you get one of those - RAOK - a Random Act of Kindness. Nice one!

Actually it has quite made my day thinking about it.

Selfish Streak

I said it before I think. You can be awfully selfish and awfully grumpy, awkward and downright instransigent. At least I find myself being like that. Not all the time just occasionally and I catch myself being a real pain in the arse sometimes.

Selfishness comes with the territory I feel. The rest is the anger working its way out. Bag man on the doorstep wants to sell me something - this time I didn't even give him the time of day. Told him straight that I knew what he had in the bag and that as far as I was concerned he'd be wasting his time trying to sell me stuff from it. I've seen these guys congregating in the local pub afterwards. Making a living - perhaps but they were banging back the beers at an alarming rate.

The flashes of utter rage and also prolonged anger get channeled elsewhere and confrontation and making your point forcibly are other occasional events. I've always had a bit of a sharp tongue anyway - these days I have to bite it really hard to stop myself launching into stuff and situations that just wind me up. I get far more wound up than I ever used to before. My high level of tolerance, even with people who defy the gene pool has evaporated.

Well you have been warned.

Someone Said that I was brave and

That they wouldn't know what to do if they had to go through what I am going through.

I don't think it is brave particularly. I think that you have an option to make the best of it, take the pragmatic approach. Attitude and positive thinking (of course you have doubts too) are all things you can lean on to get you through.

You learn to live with things pretty quickly I find. The key thing is to understand what you are being told, accept it (that is a hard thing) and then get on with it.

Each step is a little bit more of the story.

Day one - you have cancer but it isn't known how bad
Day two - we think it is bad
Day three - it isn't as bad as we first feared
Day four - we can do something about this now we have you under control

and so on. That is how it goes and it isn't brave it's just life. And that is the thing to celebrate. Until they threaten that it is going to go away from you - you really don't know how much of the time you have had you've wasted.

Blimey that was creepy

I just read that last post - creepy lyrics indeed

Anyway, if I wasn't worried enough about going in that time I don't suppose that made things an awful lot better.

I still have so much stuff to get done before I go in and suddenly next week is full up in the diary again.

I have no idea how I am going to get everything done but I suppose it is better that way.

Those Lyrics

Yep - I actually quite like this song now - I hardly think I needed to be hearing these words just before being wheeled in. :-)

I don't suppose I'll worry too much about that this time however.

Anyway - here you are for what it is worth


Hope there's someone
Who'll take care of me
When I die, will I go

Hope there's someone
Who'll set my heart free
Nice to hold when I'm tired

There's a ghost on the horizon
When I go to bed
How can I fall asleep at night
How will I rest my head

Oh I'm scared of the middle place
Between light and nowhere
I don't want to be the one
Left in there, left in there

There's a man on the horizon
Wish that I'd go to bed If
I fall to his feet tonight
Will allow rest my head

So here's hoping
I will not drown
Or paralyze in light

And godsend
I don't want to go
To the seal's watershed

Hope there's someone
Who'll take care of me
When I die, Will I go

Hope there's someone
Who'll set my heart free
Nice to hold when I'm tired

Music

I used to take in a number of CDs to Hospital and a book. I've bought myself an MP3 player now.

I find that listening to the music allows me to deal with the stress reasonably well. So what music do I take in?

Ludovico Einaudi
Antony & the Johnsons - I am a bird now
Classical - relaxing classics (Classic FM version)
Yann Tierson - Sound track to Amelie
Michael Nyman - best of
David Gray
Colin Bluntstone

It is all very middle of the road stuff except I suppose Antony & the Johnsons. For those in the know the track I was listening to just before I had the first operation was "Hope there's someone" and if I find the lyrics I'll stick them up here. It was pretty spooky listening to that track and then opening my eyes to see the porters there ready to wheel me down. Of course at that time, everything was a blur and we had no idea if the cancer was localised or not - sh1t scary stuff - believe me. Anyway, I quite like this track now :-)

The Scary Factor

I was chatting to a friend this morning about the forthcoming operation and the assessment. The last time I had an assessment they completed that and the next thing that happened was I got wheeled down to theatre so this will be a first.

I really can't stand having blood taken so I definitely don't look forward to anything to do with needles or syringes (as you may recall from the BCG syringes they use!).

So I can only imagine that my Blood Pressure will be through the roof and I just hope that they don't keep me waiting as it won't get any better doing that either.

It is the 0.1% that will get you

I just saw an advert on TV. Some domestic spray you can use that kills 99.9% of household germs including a whole host of named nasties.

The worry is the didn't mention what the 0.1% was that it didn't get rid of? Not that I should worry that much about it I suppose.

Choices

So my old company would like me to work for them based on a contract rate. I suppose that isn't such a bad idea really. I could certainly do part time and I suppose it would fit nicely with the uncertainty of the outcome of Monday week's tests.

At least this way if I have to take time off it isn't going to mess up a new employer's area.

I find it amazing that they are having to look to get me back. I don't think that they realised the aftershock of the redundnacies would have been to make those who were thinking of leaving take the decision for themselves but you can imagine if you have mortgage and you are not sure where the next penny is coming from you have to make those sorts of decisions.

What that means is that because I can do the whole piece - I could go back and be managed by the people I used to manage - which is very funny as they will make me do what I was making them do :-)

Brilliant Evening

I heard some great news from a friend of mine that his wife is getting better and making a great recovery and I feel really lifted. He has been really kind and called me on the odd occasion just to see how I am and to offer me his support and all the time his wife hasn't been at all well. Every now and then your faith in human kind is restored.

I was at a Jazz night this evening and it was one of those magic ones. A few guests turned up and they jammed along brilliantly and there were some great solos, really good musicianship and with Speckled Hen at £2.40 a pint - you just can't go wrong really.

Fantastic night and good company. I feel much better - better than I have for a couple of weeks and it isn't the beer doing that - it is the "high" of hearing that my friend's wife is so much better and on the mend and for enjoying a good night out.

So they'd like me to work with them again

How about that. Possibility of going back to work with the company that are laying me off.

It often happens that there are a round of redundancies followed by some major people leaving followed by some key people leaving and suddenly you are struggling. These guys now don't have people available to deliver! Hey ho, what do I know?

I need to think about this. It could work to my advantage in that I need part time work and they need me.

Decisions, decisions, decisions.

It has been a busy old day again

I am off out again soon to listen to some live music - Trad Jazz. It is a nice evening out, I'm probably the youngest one there :-) The beer is cheap and the company is good and the music is always played well - wit occasional variances in quality but normally it is good fun. I also get a good walk there and sometimes back as well.

Talking of which I ramped up to 30 minutes exercising this morning only to have a phone call at 20 minutes. No I couldn't be bothered after the call to reset the machine for a further 10 minutes - perhaps tomorrow.

So I've had three meetings face - to - face and a couple of phone call meetings and a few e-mail exchanges too.

At least it keeps my mind off next week and the week after.

I am encouraged by

The occasional note I get saying keep on with the blog. I often feel that it is just mundane stuff but was "told off" for that. I suppose it is important to know that life goes on pretty much as normal and that actually your emotions go on a roller coaster ride. You can't get off the Roller Coaster until someones says you can, you have to ride it until the journey is over. The cruel bit is just when you think everything has settled down - off you go on another circuit, bend and loop the loop.

I think that I play down how serious this is. I read my consultant's notes again the other day and she told me in no uncertain terms what this disease is all about.

Anyway, I am rambling off the subject - which was that I am going to keep on doing the blog and hope that it doesn't get too boring. Sometimes all that does happen is I get up, do some work and go to sleep - life as normal - I'm beginning to be more and more thankful for that.

A good evening out was what was needed

It has again been a busy day as I was trying to get my paperwork sorted. Tomorrow I have to go and sort out some financial stuff (I can't get my head around balance sheets) and so I am going to have my work checked to make sure that I am right.

I was out this afternoon and this evening with the person who has bladder cancer but is a few years in advance of me and on the BCG maintenance regime. It does me good to see him looking so well and so I am feeling much better.

Later on I have to meet some guys about web sites, servers, domains and all that.

After that I am out to a Jazz night so that will take my mind off things for a while.

In between times I need to complete some minutes of meetings and to redo a terms of reference and a re-planning document.

Thursday I will again be out and then, with any luck things will settle down for a short while. At least being busy is taking my mind off you know what so that is good.

Disrupting my life

I know I shouldn't complain about it but it really disrupts your life having Cancer. Simple things like going out on a Monday night in 6 weeks time become uncertain events. I cannot commit to anything in case all is good and I go straight back on maintenance therapy. That then takes out the Tuesdays and my life is dictated by the uncertainty of the outcome and the treatment regimen that will put me on. I have had to turn down a number of things "just in case" and people are sympathetic of course but when things suddenly move and I could have been there it takes on another connotation.

I suppose because I have always had a planned and organised life (being a project manager it tends to fit to some sort of plan) that this uncertainty and short notice changes in plans really does knock me sideways. It takes a lot to get myself back on track and I just know that something else is going to happen to mean I've got to re-plan again.

Calmed Down a bit now

I am having a very up and down time at the moment some days I am OK others I am dreading the coming event. It is less than two weeks away now - it is only a week to assessment and by this time next week I hope that that is over. At least I won't have to go through assessment and having the Op a few minutes after they finished that.

Whilst I am in this mood I ought to get on and work my way through my list of "to dos" which still doesn't appear to be getting any less.

After a long battle

What does that mean? We use very aggressive words with cancer, you beat cancer, you defeat it, you win the battle, you battle cancer, you fight it.

I always feel for the obituary that says "after a long battle against cancer" It implies that cancer somehow "won". Pedantic semantics I may have but it is an unusual choice of words but what else could they be?

Cancer is an enemy
Cancer is aggressive
Cancer needs to be tackled aggressively

I don't think I am in a battle. I feel that I am approaching recovery different to say, a cold. You have to change your lifestyle and so you "manage" the disease and try to ensure that it never gets to a point of managing you. Whatever control you do have is focused on beating the disease so you can see how quickly I slipped back into the fighting vernacular.

Anyway, the next time someone had a long battle against cancer you'll perhaps give some thought to how long that battle was and what it meant to that person.

Dream Time revisited

It can be quite a shock waking up these days to find that actually you aren't just coming to in your hospital bed but you are actually at home. The dreams are all about the hospital but not on anything specific at the moment. Mostly this is reliving things and complaining about blunt cannulas and replaying different scenarios of the outcome. The Surgeon comes over and says hello but that is it. They smile at me and it looks good news. However path results take a couple of weeks so it isn't going to be over the day after the Op.

Perhaps the dream will pick up a bit in intensity nearer the time. Despite knowing what awaits me my mind is still occasionally running wild about it.

This time, as I understand it, they will knock me out and will take a series of biopsies around the bladder. Last time they were going to do this but actually re-re sectioned and resected another area and did some retrogrades and then took biopsies as well!

These biopsies will be around the original area of the tumour and also at intervals around the bladder. These are then mounted in a wax substance and thinly sliced and examined under a microscope. They can then determine what affect the BCG has had and what the next steps may be.

Best case is that I get to go on to maintenance therapy and get 6 monthly hits and 3 weeks a time (I believe). At 6 months afterwards a flexible cystoscopy and if all looks OK then another 3 lots of BCG and so on gradually the intervals increase but the dosage I believe stays the same.

The more often you have these BCGs apparently the more severe the reaction can get and some people don't finish the course. I really haven't had such a severe reaction that I'd have wanted to give up the course but I did get a seriously bad reaction to one that shook me and I can imagine if I had had a series of those I might have thought differently.

Another person I know with Lung Cancer

I heard tonight that someone else I know has lung cancer. That is three in as many years and two this year alone.

I wonder whether it is an "age" thing - I remember being told that you know you are getting old when your friends and acquaintances start dying.

It could be that I am getting to that age where my peer group are beginning to get cancer, serious illness and dying. Not trying to put too much of a downer on proceedings you understand. I think there is also a fair amount of being sensitive to people with cancer. There is a"not just me then" attitude. Also and perhaps a it more disturbing is ranking your cancer and severity against them. It is only natural to compare and I keep coming up with an answer that mine isn't as serious as theirs. However, it probably is, it is just (thankfully) I am not on chemotherapy, I haven't lost my hair and (hopefully) things are getting under control.

I'm meeting up with the person I now know has bladder cancer and who is on maintenance therapy - he will have completed his latest course and so I can see how he got on. He did have a very bad turn with the BCG once. Far worse than the turn I had. However, he is three or four years on from his original diagnosis which I remember being quite something. I knew it was cancer but not how bad it was. So that will be tomorrow - or in fact looking at the time later today.

Right - must dash - better get some sleep.

Connecting the dots

All I need now is confirmation that I can disappear from my employer's radar, hand back the equipment which would make it difficult to contact me and to free up a third of my desk and allowing me to draw a line under that.

I have some work to get on with, well three concurrent bits of work and I need to concentrate on those. This would allow me to do that. I can then sort out my plans and get to work free from the encumbrances of the bits and pieces I have been doing.

That would tie in the dots about winding up my employment, setting up the business again and earning some part time money through that. so that would be work.

Then there are the dots in the insurance claim. Gee 5 months that has been dragging on for and I'm still not sure what to make of that. It would be nice to connect that one and not have that to worry about.

I suppose get the 19th out of the way as well. I've got to hope that it is good news and that I'll get stuck into the observation and bcg maintenance regime. That would join those dots up.

If all three could come together then perhaps I can get some control back into my life. I can also plan this holiday that I haven't had since - 2005! That was the last one in Summer 2005!

I am wondering whether to take myself off on my own - I'm pretty good at that and have travelled extensively on business on my own and made the best of it. Sometimes it can be difficult - taking a photo of yourself always looks sad :-)

Anyway, I do hope that these loose ends can just get tidied up quickly and I can get on my way again.

Mainly Successful

I think that was it. I've handed over all of the document sets along with whatever knowledge that isn't in the file systems. Everyone seemed OK with what I gave them and I've given assurances that they can contact me should there be any problems.

I've completed a note back to the boss and hopefully we can arrange to get the PC and equipment handed back so that I can walk away from it at last. Like many of these things - trying to get a clean break point is always difficult and this - which I thought would be easier than most - is still a little difficult to extract myself from.

Last bit of work for employers

I think today could mark the last piece of work I have to do for my old employers. I'm going to walk them through all of the documentation I have left them (my legacy) and make sure they know what it is, what state of readiness it is in and so on.

Hopefully that will be an end to that, I can hand back the laptop and can put the whole thing behind me. It is baggage that I just don't want, after all I was made redundant and that is fine but to carry on working for them during the notice period is downright depressing - both parties need to move on.

I'll see if I can get that to happen in the next few weeks and then I can forget being available for them and get on with my own things.

I think it is fair to say that

I am getting quite wound up now. 2 weeks to go, I know what is going to happen as lets face it - it's the same as before but I won't be in for so long. I find the whole thing totally dehumanising and like being wheeled around in an abattoir.

I think that the worry is whether they'll find anything and what will happen then. It's not something that is cured and it can go one of a couple of ways. The ideal of course is to go onto maintenance - when will that start and finish? If it is bad news then is it something more drastic?

I don't want to wake up with the 4 weeks off work bit again but if that is what it has to be then that is that.

As I've said before the problem is recurrence and that is the worry, they can scrape away, treat and monitor but there is always the possibility that you've got an aggressive little disease and all it wants to do is get you!

That is enough for tonight. I can't imagine I'll be fun to be with for the next couple of weeks, I really notice how scared I feel. I am pretty frightened and I didn't have time to think on the other ones. This time I do and I've known for a long time that I'd have to do this.

No doubt I'll be moaning on about this in the next few weeks so forgive me for that - I keep hearing "Its got to be done" but most people who say it to me don't have to have it done to them.

Stop Talking About it

I wish everyone here would stop talking about the day I am going in. I just get relaxed and forget about it when I get "Do you want me to come in with you?" Sensible enough question but how many times do you have to ask me?

Red Moon

My goodness what a great view we had of the eclipse. It was probably the best one I have ever seen. We have the telescope set up in the back garden, video and ordinary cameras too.

It was well worth waiting up for. Combating the freezing conditions was easy with mugs of hot soup and a nice shot of brandy when I got in.

Full Moon at the Eclipse

tonight and I have the telescope out and ready. Not often you'll get to see a clear look at a reddish moon. I'd like to live somewhere away into the country as the light pollution is pretty bad and also most people would probably wonder what on earth I am up to at night with a telescope in my back garden! This is not a small telescope this has a stand and all that - it needs 30 minutes to acclimatise to the temperature and so on.

At least it something we can all do this evening I suppose.

Letting off some steam

Yes, I feel like going outside and yelling or screaming for a minute but what will the neighbours think? Situation Normal some of you dear readers may think but no!

I need to go and let off some steam somewhere - not sure where or how yet. The alternative is to go and blacken some eyes or beat the stuffing out of someone or something.

I may just have to up my exercise machine to go for an hour workout instead of my 20 minutes normal and see if I can work it out that way.

If the Rugby is on I could just go and shout at the TV - neat - problem solved!

The Dreams are back

Either side of the Operations last time and now this.

Strange stuff. Last night arguing that I wouldn't need to be kept in for four days just for biopsies. It was very strange indeed. Doctor consults his paperwork and nods sagely. I need to take my mind off of it somehow as it tends to surface more times a day than I'd like and always in my dreams.

I can do without the constant reminders about my condition. The term "coming to live with your condition" takes on a different meaning as I feel that I probably haven't still. May be it takes a lot longer to get used to it.

A bit Deja Vu

This going over old ground and worrying about things (when you can't really do anything about it). Concerns over the insurance and the ability to plan, worries over what the results will be and all that.

I'm not 50 yet and my body decided to pack it in at 49! I feel like I've been filled with some of that contaminated petrol that has been ruining people's cars this week!

I think I will turn in early tonight and see if I can achieve a good night's sleep. I haven't managed that for a long time and I could do with getting some shut eye even if only to allow me to stop this incessant yawning. I realise now that on three occasions over the past week I have been awake at 3 in the morning but still up by 8.

End of the "Working" week

What a week of ups and downs and changes of fortune. Lots of things have been sorted out but I need to get to the post office - I have loads of envelopes all loaded up ready to go, cheques to be paid in and all sorts of odds and ends to clear up.

I will be glad to get some sort of rest this weekend. Not too much though as I have to complete some planning documents and finish off some minutes of a meeting too.

That is what is nagging me

It is the inability to plan anything that annoys me. I can plan to go out next week but beyond the Hospital date then I am stuck as I don't know what will happen next. It puts me out but that really isn't the annoyance either. I could live with that but it also makes it very difficult to go and get a job at the moment. How could I start a job until after we know what the BCG has done or what the next steps are.

Typical Project Manager - Normally I can tame the unknown a bit but at the moment I have no control over my future at all. It's all very disconcerting.

What also happens is that you find it difficult to get motivated to do things and then stay motivated. I have a number of things that I need to do and each time I have to psyche myself up, plan and then run with it and I have to finish it. If I don't I know I will just leave it.

If I feel good is it a good sign?

Someone said that if you feel good then that is a good sign. I do feel very good and I still need to lose some weight so based on that he reckons that I should be OK. Is he a Dr? No, but he is someone that I'd trust to be right about this.

It is a strange thing as I suppose you cannot feel your internal organs - well I don't think you can. I can't feel my bladder or what it is doing etc. So if there was something going on in there I'm not sure how I'd tell but I'd subscribe to the fact that if something was wrong you would notice it.

I'm still reeling a bit from the nature of the disease and possible high likelihood of recurrence. None of which I like the idea of much. Some people have had a number of TURBTs and some have gotten away with just the one.

Same for everybody

I suppose the fear of going into Hospital is the same for everyone - not just me. It feels like it is just me. I really can't stand it and find it thoroughly upsetting.

I don't suppose anyone knows someone who actually likes going in then?

Confirmation

Letters for Operation and pre-flight checks (assessment) are through. 13th and 19th so at least that is something I suppose.

It still turns me over just thinking about it...

A bit? No - a LOT better

It is always refreshing to meet someone who has a completely different way of looking at the world to you. I enjoy being sold ideas that are well thought out, constructed and well delivered.

Over a few pints of bitter - and some very welcome seafood (you hardly see seafood vendors these days - he was most welcome) I learnt the finer points of business intelligence. What a delight to hear a 25 year old explain in easy terminology and to speak about the sort of returns and the avoidance of risk the approach had as a benefit.

But then, after three pints it didn't matter anyway and we spoke a load of tentacles! (Look up earlier posting for explanation).

Well I am cheered up and we both managed to get all our frustrations and annoyances about work aired! Job done, happier than I was earlier so the day ends well - and just before midnight too!

A Bit Better

I have finally sorted out some financial figures that have been bugging me for months. That cheered me up no end as I can now see where the problem was. I fixed someones PC and I am going out for a beer with my Nephew so it is a better end to the day than the rest of it.

Tomorrow I have a meeting in the morning and then I can get on and get some more work done.

So I am a little bit happier than I was earlier on in the day. I hope that lasts

Come On, Cheer Up

I'm having quite a miserable day today. I'm getting on quite well with what I have to do and trudging through a treacle of paperwork but dear oh dear, I just don't feel my normal cheery self. That will probably change when the household arrives back from work and school /college I can probably put my stage face on and sort that but I'll probably still be a little sad inside.

I want everything to be sorted out, normal, back the way it was, like it was about this time last year. Of course that isn't going to happen but that is what I feel like right now. I feel about of "why me" coming on again :-) I know well enough why me - stupid sod! It is amazing how occasionally you feel like this. Ah - there's the front door. time to put on the grease paint and put on the show.

TTFN!

Routines

I hope that having to go in for operations isn't a routine thing. I really hope that after this it moves on to something more manageable and planned. I hate the flexible cystoscopy but I hate the Operating theatre even more. Also at least you get it over and done with pretty quickly - it may sting a bit but at least you don;t end up catheterised and feeling like sh*t.

Stomach churning is just kicking in when I think about it too. I know it has got to be done though. If all is clear then it is less operations, more BCGs and scopes every 6 months. As I convince myself each time. This is better than the alternative.

Slipping the date of the op

Now means that if all is OK that there is potential that the treatment will slip into Easter and I have things to do during Easter. On top of that, it is possible that treatment may hit May and I definitely don't want it to do that as I have a once in a lifetime day out in early May and the last thing I want is to have had a BCG treatment the day before. It is possible to go out the day after but you are always conscious of the need to (possibly) dash to the bathroom something that will not be possible.

It sounds strange that you wouldn't want a treatment - I suppose if I have to have it done then I will just have to give up the opportunity knowing full well it won't come again. Decisions, decisions. As I've said before it makes planning anything an utter nightmare.

Exercise Revisited

I am continuing to do my exercises and 20 minutes 3 or 4 times a week. I tend to do my exercises first thing in the morning before breakfast and occasionally I will do exercises in the evening. 20 minutes is quite good and I have now tried out some of the more strenuous exercises which vary the loading a number of times and simulate hill climbs and descents etc. I also tried the one that works on your pulse alone adjusting the load to suit your heartbeat.

OK, OK, I can hear the mutterings - yes I DO have a heart so there!!