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.