Bank Holiday Phase Shifting

That is the trouble with Bank Holidays. I keep thinking that it is Tuesday when it is in fact Wednesday and my whole week is screwed. I have a huge backlog of little things to do and it just seems to be taking me ages to get through them.

I almost certain that by brain is waiting for the appointment with the Hospital next week and the outcome of that before deciding what to do next. Perhaps it is because I have other things on my mind then that I'm not achieving all I want to do in my day. Things do get done but slowly and it tends to take hours rather than minutes to do them.

Once next week is out of the way I can plan again and I will sort out that holiday too.

When now actually means next week

I'd quite forgotten how work is. I am doing some work that should have been delivered on Friday night but wasn't quite ready as there was some data missing.

Yesterday I spoke to everyone about it and it was no worries, not in until the end of the week and it can wait. That threw me a bit as I was fully expecting to have my ear bent that I hadn't delivered it. I'm still waiting for the data of course which I might get on Friday.

The fun of it all. I keep expecting people to work at my speed and throughput and that just doesn't happen.

I'm not sure quite how I am going to return to work as I am sure I am going to get the maintenance treatment and probably another 6 weeks of Immunotherapy treatment. That takes 2/5ths of a working week out for me so I could do with finding a three day a week job for 6 weeks. Perhaps I just ought to set my sights on finding Hen's teeth and rocking horse poo, they'd be an easier ask!

All clear

This morning all is OK and back to normal. I decided to skip the exercises and to take it a little easy as I don't want to antagonise the situation.

I am looking forward to going out this afternoon - I have been invited to a Lodge that meets in the City of London and I don't have to do anything except sit back and enjoy myself which is always an easy thing to do of course. I am also going up to London tomorrow but this time it will be the Central/West End.

I don't think that I have been out and about so much for at least a year and so it is a bit of a treat to get out and to enjoy someone else's company.

Even without exercise the blood pressure readings are good again. I suppose there is a bit of a silver lining after all when you see that other problems I didn't know about have come to light and been tackled.

On Off On Off

I got the tiny little blood spots every other go tonight. Luckily the last two have been clear. It is a little bit frightening when you see this despite knowing that in no way can it be a tumour and it is more likely just to be the scabs dropping off.

What it does mean though is that I just need to take it easy and not overdo it. I was only saying a day or so ago that I thought I had been pretty good about slowly building back to normal and yet today's little warning obviously says I'm not ready for that so I will drop back to medium exercise again.

One of the problems - and I've said this before - is that you can't see or really feel too much wrong with you and so you can easily overdo it. Your body just revolts against this and you get the little warnings and set backs like this.

Forgive the running commentary

About my urination frequency and contents :-)

The last one was totally clear so I am guessing that all that is happening is that the biopsy and the resected area are just releasing their scabs.

Roll on the day when I can just go and have a pee and not worry about it :-) At least the post operative sharp intake of breath just as you are about to pee has gone and things are back to normal now.

Carbohydrates for dummies

I need that book :-)

I just worked out what I was doing wrong on my diet. I cut out loads of things that really I shouldn't have done. The primary one was, as you probably remember, I cut back heavily on bread and just have a little homemade bread now and then - I am no great lover of rice or pasta and so didn't have those and I had potatoes but I doubt I had them every day so it appears that I inadvertently cut down too much and lowered my carbohydrates too far. hence blood glucose levels were shot to pieces.

It also appears that the way I tend to eat fruit, generally all in one burst in the late afternoon or early evening is also not to be done either! I should be spacing that out.

It appears that in my eagerness to get the salt out of my diet, start to get the weight off and ramp up my exercise regime I managed to screw up my bodies metabolism.

So - as of today, I have changed my diet to make sure that I get carbohydrates three times a day and that I spread out all the healthy things to balance those out across the day too.

No one ever said that lifestyle changes were going to be easy.

Oh dear bit of blood

I thought there was a bit this morning and this afternoon another small bit. It could be the scabs coming off I suppose as it looks like tiny little clots and only one at a time not a lot at a time like I've had before.

Whatever, it is quite alarming to see even these tiny amounts. It takes you right back to those early days. Mind you there is a big difference, I actually have a good idea what is going on now. Then - well - I was just in a state every time I went to the loo.

I might have overdone the exercising now that I am using a more strenuous regime and then again, the wounds do need to come off and the bladder repair itself properly. I can't imagine it is anything other than that as these things don't grow that fast at all.

Worrying just the same and I just need to keep my eye on it.

Exercise, Diet and Blood Pressure

I recorded really good blood pressure readings this morning, almost as low as those when I was on beta blockers. It hasn't just dropped to these levels it has been gradually going down over the last three weeks and today I was recording 110 over 70 which is almost the lowest I've ever had. I keep a chart of my BP readings and do morning and evening. It has been quite gratifying to see things dropping down and normalising over time. Mind you it isn't something that is particularly accurate as you can have a high reading one minute and five minutes later it can be normal. You do need to follow a set routine which I now try and do. Rushing to get it done is bound to give you raised readings.

I also had a nice surprise on the scales. I haven't put on weight but neither did I lose any either. However, I was convinced that I should have put weight on given the excesses of last week.

Unfortunately this week I have two more meals to go to and I am certain that these too will put the weight on or keep me where I am.

Working on a Bank Holiday

I finally got all the important paperwork out of the way about 5 minutes ago.

I now need to tidy up my desk again which looks as if a mischievous Elf has ruffled the papers and put them in to all the wrong piles.

I still didn't manage to get the little bits and pieces done - you know those odd e-mails out to people that aren't really important but never get off your "to-Do" list. I need to make a concerted effort tomorrow to get a little more focused on this.

Unfortunately (or fortunately) my lunchtime appointment has been cancelled tomorrow. I was actually looking forward to getting out for a short while and so I can probably put a lot more effort into tomorrow to get things done.

The trouble with doing too much

I have given up a lot of things, not necessarily through having Bladder Cancer. However, like a lot of things you do, you end up running things because nobody else will or because they do it so badly.

It is difficult to walk away from some of the things that I've been instrumental in building up but I don't want to be seen as interfering and in all reality I would far rather not get involved, leaving things for the new man. Like all clubs I suppose those who actually do things end up doing them.

The trouble with doing too much is that you don't get time to yourself (I am doing admin on a bank holiday) and you don't get much time to yourself. If I had disappeared I wonder what would have happened?

Good News

We made £3500 on Saturday at the old people's home. That will allow us to finance the new garden furniture. They have a lovely garden area where we also hold the Easter Egg Hunt and the existing parasols are beginning to get worn out and we need decent ones as they get so much usage.

I didn't think we could make that sort of money on the day and it is easily the most we have ever made.

To think that this time last year I hadn't even heard of Bladder Cancer!

Changed the Exercise back upto the next level

I have been working my way back up to the levels of fitness I was at prior to going into hospital. It may surprise you just how much a short procedure like I had takes out of you.

It has taken me close to 3 weeks to get back to where I was. Today I upped to a 30 minutes straight routine on one of the harder programmes. I normally do 3 lots of 10 minutes on a relatively simple 3 peaks of effort in each 10 minutes. The one I did today takes you gradually upwards 3 times to three plateaus of effort.

There are a few reasons that you cannot do exercises straight away - one is that you have a number of cuts inside your bladder and they are healing, the other is that you are pretty sore from the pulling around and you feel a bit groggy from the anaesthetic. When the use a rigid cystoscope they also stretch you out internally. Your urethra - now ladies, your transit is a bit better than us lads is the way they get in to undertake the procedure. If you imagine the lads urethra goes up then bends down and back up through the prostate and then into the bladder so a sort of "S" shape. Well sticking that pipe in you straightens everything out and believe me, whilst it isn't painful particularly but it is uncomfortable and this also sort of limits your ability to climb Mount Everest or even do a little off road cycling. You can imagine that the bladder being balloon shaped means that the pipe needs to be viewed from some pretty odd angles and be twisted and pulled into place. Thank goodness you are knocked out during this procedure. You certainly don't want to start exercising before a week is up - I think that I waited for a week and a half.

Anyway, so almost three weeks after I started again I am back to where I was and ready to go on a bit further. It is surprising how much it takes out of you. I can see why I was so weak last time I had the more major procedure.

It still amazes me that people think I am cured

Casting aside that meat can be cured of course! Yes, it is strange that the downgrade has implications like "So that is it and it is all over?" and I have to politely explain that well, it really is the next part of the journey - I've only just begun if the truth be known.

Interestingly phase 1 is over and miracle of miracles, downgrading means that they got rid of the Carcinoma in Situ in the lining of the bladder and it looks like (I'll know soon) a small tumour that perhaps was seeded last time - who knows. After the next little cycle of treatment I expect to start to get back to "normal" although I very much doubt that anything can be considered normal anymore.

The trouble with bladder cancer is that it comes back and it can come back years afterwards - it is the most costly of diseases because of that. The good news is that you get constantly monitored (it ain't nice but you do get monitored). The other good news is that they can control it and that when you get it in the format I had it in, you can cut it out, treat it and in 80% of the cases you can halt it and regress it (like they have in me).

But you don't actually get cured this soon, nor does it mean that you are at any less risk. 2/3 rds of people get a recurrence. So I also need to temper the excitement and current elation so that should I get it again it will not be a crushing disappointment. As you can imagine, to have to go through the operations again would be pretty soul destroying but if that is what needs to happen then so be it.

So now I am telling people that it isn't cure, it is downgrading, it means ongoing treatment - perhaps for up to 10 years and then, and only then, if I have been clear all that time, they may say that it is cured. Gives you something to mull over with your cornflakes & coffee in the morning that I'll be seeing a lot more of the Hospital in one way or the other, that I'll be continuing the BCG treatment regimen and that they will still be sticking little cameras into me for a good few years yet.

At least my GP doesn't need to see me for a month and by then I hope to have this blood glucose problem fixed. One of the major things I think I did was to come off the carbohydrates so suddenly and so completely. Apparently I ought to just get that balance right which I intend to do. I made the first steps with that today and will be ensuring that I get that right in the coming weeks.

A late Sunday again

Perhaps it is just me getting towards the end of the week but it was again a lie in Sunday today - I was awake but really just didn't feel like facing the world and so just lay there day dreaming. I appear to pay for it later - like now as I am wide awake.

Maybe exercising late on a Saturday night didn't help either.

After two nights out this week and today's indiscretion

I should have expected the scales to tell a tale! They did, I've put a kilo on by the looks of things although the scales were hovering around a bit.

I had a four course meals on Tuesday, a three course meal on Wednesday and of course a burger and some sausages today!

As many people have said before it is easier to put weight on than take it off. Mind you I am still heavier than I was this time last year by a good 6 kilo.

I do like my GP's words though - he was saying about not living like a hermit and to vary food and to do things in moderation. I heard someone discussing a lady of 100 who reckoned that she had lived that long through moderation in all things. She had in fact decided to give up smoking when she was 95 :-) Brilliant.

Saturday Night - Nothing on TV and you did what?

NO - Not what you were thinking! Or at least I don't think it was thinking what you were thinking.

No I decided to get onto the exercise machine and punch out 30 minutes worth of exercise on a slightly higher setting. That will make up for the burger I accidentally ate at the Spring Fair - oh and the Pork and Leek sausage, well when I say sausage I really ought to say sausages. Well they were going to get thrown away otherwise and so I helped out - they were tasty though.

I have part repented by overdoing the fruit this afternoon but then again, I accidentally had two pints of beer on the way home too. As you can imagine, they needed to be forced down me :-)

Who am I kidding :-)

It was a bit cold

I don't think I want to trust the weather man again. Said that the cloud would burn off by 10 and it would be a good day so I turned up in a tee shirt and froze as I was on car park duty! After freezing away all morning - you've guessed it, when I got home the sun came out and it has been lovely this afternoon.

I've escaped upstairs as they are watching Borat and - I'm afraid it really isn't to my taste.

It quite took my mind of everything else today which is great and it is only now that I have even thought about things. Long may that continue to happen.

Are you really a fraud because you survived?

It is a strange thing. I spoke to someone else who mentioned that he felt that his cancer was fraud as he recovered and is healthy again. I think I felt a bit "strange" about it at first - having cancer - I mean you cannot take that sort of information in easily. The first reaction is normally two sided - one - a relief at least you know what it is or what you guessed it was, you knew you were pretty ill but hadn't grasped it all and of course then you get home and you go through the "I'm going to die" bit. Now frankly that isn't nice. A little later on you begin to get used to the fact that (in my case) you have a pretty good chance of surviving this.

When I speak to most people they say I have been through a hell of a lot and I suppose, looking back at some of the stuff I've written, I probably have but you don't really have a choice in this. well you do I suppose but I chose to have the treatments. So given that the treatment isn't comfortable or by any means over yet, people wonder why I think sometimes that I'm a bit of a fraud.

I think I guessed why that is today. It is because I survived it, because you expect to get cancer and die and in reality that isn't the case (I at least know that now). However, when you see people going through far worse, or getting a terminal prognosis you kind of feel guilty. Yet, knowing people who are getting the all clear and being discharged - I am so happy for them. It is all a bit strange but then that is the disease all over. The common misconception about cancer is that it kills you - if it doesn't you feel there is something wrong with you! How stupid is that :-)

I find the logic of some of the things I think utterly bizarre - cancer makes you far more inward looking and thinking perhaps I think too much and don't let things just happen to me.

So - enough of the deep and meaningful stuff for the moment - a bank holiday weekend beckons. Tomorrow I am off to help the annual Spring Fair - I do the Car Park duty which is OK.

Oh - That's Alright Then

That's good. The Doc called and whilst the readings are high, the trend is only recent and there is no trace of these problems in the past (apparently you can tell based over some months back!). Meaning that I need to go and see him in a month - yea - I bet I'll have to have another blood test :-( however. the kidney function hasn't changed and so I'm back on the Ace Inhibitors.

The concern is still there that there is some glucose intolerance but that is going down and so at least I can be observed. It is possible it is to do with the pulling and poking around at the Hospital and I've no doubt that is so.

I would imagine that my body wonders quite what the hell I've done to it as well, it has had a complete change in diet in the past month and a half - I imagine it is traumatised and shocked! Poor old thing...

It is all go today

This working for a living is a bit of a drag isn't it?

I suppose someone has to do it and it might as well be me!

Actually it is quietly quite exciting doing this sort of stuff again. Don't tell anyone that I like it though.....