The Long Distance Pee

I seem to be back to the every 15 minute routine (actually it hasn't been that bad). I can't see that I have drunk anymore than I normally do. Perhaps I ought to keep records. I do on treatment day so I know how many pints of water I have had post treatment and when I went and what the results were.

It has actually settled down now but late this morning I was in and out all over the place.

Navel Gazing

Strange past time. Trying to get people to look up and ahead is interesting. You can warn you can explain, you can talk but you cannot make people listen. It amuses me no end when we get to the point where it has all gone pear shaped and I wonder whether to utter those word "I told you so". The fun part is the person it happens to has absolutely no idea what is coming down the road to hit them and it comes as a complete surprise.

One of my favourite sayings is "I may not always be right; but I am NEVER wrong".

Not a lot better this morning

I can still feel the anger inside me. Whilst I'm not as angry this morning as I was yesterday I have to admit to being quite up for an outburst or two at this moment. It is probably the way I am feeling about myself and what I have and why no one else can see it the same way I do - I think.

I didn't know anything about Cancer before I got it and so it would be difficult for me to understand a colleague or friend with it. In fact, it was only after I got this that I fully comprehended how some of my friends who have gone through other Cancers must have felt, hurt and recovered.

Perhaps I need to communicate more and try and give them some understanding of what it is really like? The trouble is, you tend to sound "attention seeking" or worse "self centred" but you don't really mean to be. My "honest this is how it is" approach also has its drawbacks as it is probably too much detail and quite disturbing?

So perhaps that is it. Work, in contact with real people (face 2 face) looms large and perhaps their grasp of the situation will need managing so that they get it.

Right, that's enough of the deep and meaningful stuff on a Wednesday - time to get on with some work.

An Angry Day

Tuesday has been an angry day. I didn't get done what I wanted to get done. Stuff got switched around and totally screwed my day up. I had a sense of humour failure on a number of things. the Insurance, Work, Projects and generally me being fed up.

I hope tomorrow is a little bit better. Not that I don't feel well, just one of those days. I must be careful not to use the "who gives a s**t" sort of answers when discussing some insignificant point at work. Careful son, careful :-)

I'll bid you good night as I ought to get some sleep and forget about today altogether!

I don't think they got it

Yes, I'm certain that some people didn't really listen when I said I'd be back at work in January full time they have taken that to mean that this is the end of my treatment. In fact that is probably far from the truth. I am expecting that this is the beginning of my treatment. Let me explain:

The Cancer grade meant it needed an operation to get it manageable. The second operation was to attempt to get the grade to CIS which it is. After that - then treatment can begin. This batch of treatments are to stop recurrence of tumours. I thought I had explained that to them.

If this is successful then maintenance is an ongoing thing, for many years to try and control this.

It looks like I'll be explaining it to them slowly again until they wake up and get it.

FUD

Fear, Uncertainty, Doubt = FUD

A Bit Annoying

I received a letter from the Insurance Company. The letter they sent in October hasn't been actioned by the Hospital. Six weeks would seem long enough. the trouble is that it is one of those ticks in the box I want out of the way. Treatment [tick], recovery [tick], holidays sorted[tick], Insurance [Tick], Biopsy Operation [Tick], Diagnosis and future plan [Tick]....

Let's hope that the Hospital get the reminder today and send back the form and we can all move on again. It would get it out of the way and stop part of the FUD that goes with all of this.

Can it be Cured?

I don't think Bladder Cancer is one that gets cured. I think you get remission on this one (I could be wrong I need to check it).

Some Cancers can be cured, some of course get cured as the radical surgery removes the infected organ entirely. I suppose if they do that then perhaps it is cured in Bladder Cancer cases.

I state this only in as much as someone dropped me a line hoping that I'd be cured. I'll have to do a bit more research on this one.

Different Again

Well that treatment was different again to the last one. The instillation was much easier and less uncomfortable. The frequency of going to the toilet was down and so was the pain level. I could be getting used to it I suppose but I doubt it. I again waited until after the two hours to have the Paracetamol and Ibuprofen. I then slept for 2 1/2 hours before waking to go to the toilet this time.

Whilst the frequency was down the level of gunge and clots coming out were more pronounced and this morning quite the largest two I have ever seen.

I am feeling very well again and my body is warm all over which I have tended to notice over the past few weeks.

So an interesting change in side effects. I spoke to the Nurse yesterday about everyone else having colds and I have to let them know if I get a cold especially Flu or Flu like symptoms, additionally if I get a chesty cold too. In the latter cases they would delay treatment - something I do not want at all.

The Urology Nurses are very good and I liked the comment about this nurse needing her sticky labels - I asked if I'd get one for being a good boy? No - these are to put on the treatment syringe which she actually showed me. I still reckon that the syringe and all the equipment hanging off it (tubes and bits), if it were a real injection would make you pass out in fear. It is massive.

I'm up and about early again this morning and fully with it. A little discomfort and that is about it so we will see how the rest of the day goes.

That wasn't so bad

Apparently I have a tight urethra hence it is a little more painful for my treatment. I was hoping they wouldn't mention size at all really :-)

Actually, I can't put my hand on my heart and say that it hurts. It is unpleasant and uncomfortable and you get a sharp gasp as the catheter passes the Prostate but other than that it isn't like thumping your thumb with a hammer or cutting yourself. I'll not mention pricking yourself as I know that the audience for this blog has a strange sense of humour :-)

It is brilliant to know that I only have one more of these to go.

More later - off to lie down now I have done my 15 minutes a side routine.

5th Treatment

Here we go - 5th treatment of 6 looms large today. I had a much better night's sleep than I normally do before these. The Appointment is earlier too. I am going to re-run last week's timetable which ensured I had an easier time of the side effects.

I only hope I don't crush the stress ball too much

Exercise

I managed to get out a couple of times down the week and so far I have been out walking every Sunday. The muscles around my stomach are where the problem seems to be and I am hoping that as I increase the exercise I can get them working better and tightening back up. Also I need to lose some more weight. I've lost a little but I really need to lose some more. I am eating sensibly now and not snacking as I'm not just sitting around anymore.

I suppose putting on weight could be viewed as a good sign but really I need to be back down to where I was beforehand.

All Around me are ill

This will be fun. The rest of the family have various colds and Flu like symptoms and I've got to get my treatment tomorrow and report any "Flu like" symptoms which could be serious side effects :-)

I'll have to have a chat with the Nurse tomorrow and see what that is all about.

Downhill from now on

Yes,

2 more treatments to go - one tomorrow and then just one left after that. Something to look forward to leading up to Christmas.

You feel with this treatment that you just get back to feeling great again the day before the next one :-)

Life is like that don't you think? No doubt the specialists worked out that it takes roughly a week to recover and so this was the best frequency for treatment - clever aren't they!

Beginning to get back to "normal"

As I said yesterday, I am beginning to notice long periods of time where I don't think about or act as if I have the disease. I think that this is a good sign as I am coming to terms with it and I am beginning to manage it and not it managing me. A lot of people talk about having a "state of mind" about cancer. I'm sure there is something in there about that.

In this instance I think that you do get a very big shock to start with, you don't believe it for a while, you tackle it with denial (or however you tackle it), you then get to the point of acceptance. I think you get to acceptance and then you go through a stage of depressive acceptance and grow out of that. I think I have now got to that part which is I've got it, I've gone through the treatments and I'm recovering and feel almost fully recovered, I don't have anything on my near term radar like tests and operations to cope with, Christmas is coming, things like work are getting back to normal, my day to day is getting back to normal and very soon, I hope that I'll be going a day at a time without thinking too hard about what I have got.

I'm going to be making sure that I eat and drink the right things still but these are becoming habits now so that should also help me to think less about these things.

Well I am pleased about this, I was beginning to worry that all I'd ever think about was how I am, measuring everything I was doing in terms of what effect it would have on me etc.

Not so bad

I have just finished the majority of newsletters and Christmas Cards and notes to those who don't know. It wasn't as bad as I thought it would be apart from one - someone I should have told a long time ago and completely forgot to. Other than that - nowhere near as bad as I thought it was going to be at all.

Hope it stays that way.

Beginning to think less about it

I'm beginning to think less (all the time) about what I have now. I can go for many hours without my thoughts turning to the facts and that is beginning to help a lot. I can concentrate on things and it is only seeing the paperwork and other reminders that take attention away.

Today is going to be difficult not to think about it all day as I am doing my Christmas Cards and inserting newsletters or writing notes to people.

Silly Season

1st December - no one wants to work, no one wants to make meetings, meetings that have been planned get canned and moved to next year.

Here we go, it is Christmas and all the crazy behaviour that goes with it. For once - this year I'm going to take extended time off and I am actually going to spend time to myself. I've often taken time off but hardly ever have I done what I want to do. I have absolutely no idea what I AM going to do yet but I'll have fun thinking about it. Two more treatments and two more weeks left and I can relax up for a while. Nice!

Friday - Time for a laugh

When I got my Outpatients Appointment letters they arrived in six envelopes over two days.

Now, you'd have thought that someone booking these knew they wanted a recurring appointment, on the same day each week for 6 weeks (albeit not all at the same time but near). How difficult would it have been to make 6 appointments and put them all on one letter? Everything would have been in one place, the cost of letters, envelopes, handling and postage alone would have (you would have thought) paid for the difficulty of doing that.

I reckon though that the computer system cannot do this and each appointment once made automatically generates a letter.

Perception of the treatment

I had a funny chat today. Someone thought that - the treatment I was having now would be the lot, you know, I'd be fixed and that was it. I'd probably say that my impression would be the same if I didn't know all about my disease and the treatments available.

I will have to do some educational work I suppose to explain what it is I'm having done and what it really means.

I was disappointed to read today that this disease gets a lot of recurrences. I don't like the idea of that at all. The operations are stressful things to cope with and to imagine having to have a number of these again in the future is worrying. I hope that the treatment will get me as near to OK as is possible.

It's not that I don't like you - it is just that I could be writing this blog for a number of years!