Tuesday, March 20, 2007

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.

Monday, March 19, 2007

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.

Sunday, March 18, 2007

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.

Saturday, March 17, 2007

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.

Friday, March 16, 2007

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.