Nothing like

A stream of bloody urine to grab your attention is there???

I'm guessing all this coughing and racking my body has dislodged one of the scabs. It wasn't just a scab it was a full on flow for a short while and then afterwards went clear.

Shudder!!! It brings back many worrying memories but I'm certain this is OK and it just means all the scabs are coming away now. I just need to make sure I don't do anything silly whilst that happens.

What on earth was that?

I went out with two friends yesterday to have a few beers and lunch and to edit and review the documents I need to print off for Saturday.

I was really surprised to find that when I got home, I sat down and went into a Flu like series of shivering, hot and cold, headache, legs like lead, sore throat. Where on earth did that come from. I've dosed myself up with drugs and gone to bed and sweated most of it out during a very uncomfortable night's sleep. I still have some of the symptoms in a minor way but it did take me by surprise.

I was going to venture out tonight but it is so cold and I don't want this cold to get worse. What a nuisance.

I think I have also resigned myself to having to give up my course. I just don't have the time to catch up and I haven't been able to give it the concentration and attention that I should do. I will discuss that later this afternoon and probably give that up. It isn't what I wanted but I have been so low with this set of tests and over Christmas and the New Year that I would need to make a supreme effort to catch up and I just don't feel up to it.

Changed Date

I thought so. I sent off an e-mail querying the date for the Out Patients Appointment as late February really did seem too far away.

New appointment is next Monday (will I ever get back to work?) late morning. So at least by this time next week I will know which way the land lies and what the next steps are going to be.

A bit of trepidation around that meeting but maybe I'll find out a bit more about what went on and of course, the answer to the most important question of all - is it clear?

Well you certainly got my attention

Steve K and I have mentioned that awful moment you do your first Pee after biopsies or Peek and Poke and it is as if you are p1ssing Razor Blades or fire.

Well in this case I believe they took this a little too far. We used to say "only in America", but it can now also apply to Australia :-) Enjoy....

http://news.bbc.co.uk/1/hi/world/asia-pacific/7812875.stm

Ventured Out

It is very slippery out on the roads and pavements and a couple of friends very kindly picked my up and dropped me back from the Lodge of Instruction meeting tonight. I have to say that I was really worried walking on the slippery surfaces. However, I managed OK and it was good to get out. I felt a bit cumbersome having to keep getting in and out of my Chair and walking around but I will be alright by Saturday. I need to set myself that target at least!.

I broke the back of one of the documents today and hope to complete the rest tomorrow. I still have lots of little bits to do but must get on with my course work as well. I feel that my time management skills really will come into play tomorrow! They need to.

Oh nuts

Nothing like giving yourself a bit of pressure is there? I just rechecked my assignment dates and they aren't the 15th January when I thought they were they are this Friday - the 9th. GULP. Guess who hasn't even started doing the lesson let alone the assignment.

Damn. I'd better get my arse in gear for that.

On a brighter note, thank goodness I didn't go for today to have the Operation. Knowing what I know now I'd have been lucky to have made it for this weekend's big show. Mind you I might have got my assignment done on time.

No need to panic quite yet - tomorrow morning will do for that :-)

In a Way

Thank goodness I decided not to go to work this morning. We have a thin layer of snow and ice and one slip and I'd no doubt have felt that all the way. I'm still not right. Funnily enough at least my mind is clearer than it has been for ages and I don't have that "heavy head" any longer. My stomach still feels like it needs a few weeks toning to get back to normal. I cannot fit into my ordinary trousers as they feel too tight and that's nothing to do with Christmas either as I haven't eaten huge quantities of food.

I just hope that I can get fit quickly enough to get back to work and to get Saturday out of the way. Also that I can sit at my desk for a little longer than I can now. I can do about 1 1/2 hours at a time now but even then that is pushing it.

Getting Somewhere Now

Thank goodness that I felt good enough and I actually got on and did some work today. A good run at this tomorrow and I'll be happy as I might get to knock this out in time for the weekend. I need to produce about 100 booklets of about 20 pages each.

I also need to do another booklet which is far easier as it is an A4 folded in half, again about 100 of those.

So I'm pleased with the progress and it has been good to sit down and concentrate on just getting this sorted out.

I've passed a few more scabs and bits tonight and so at least the inside of my much beaten up bladder must be getting better and back to what it considers to be normal.

I am beginning to feel better and hope that a few more days convalescing will have me sorted out and to get me back to some semblance of normality.

Better but some pay back

I managed to go to the party and survive although standing on my feet for the best part of 4 hours has played havoc with my back and so I am resting in my chair with my feet up but also with the laptop so that I can continue to work. Additionally I've started passing the odd scab when going to the toilet. That is to be expected at about two weeks and isn't a cause for alarm although it doesn't sound or is, in fact, pleasant. It is a good thing in a way as I can gauge that I am getting better and can start to do more active things without the worry of starting to bleed again.

At least today I have made a decision not to go to work tomorrow and I feel for the rest of the week. If I am honest with myself, I am not up to it and I'd rather sort this out now than go to work and set myself back as I have managed to do in the past.

I've got so much of a backlog of work built up that I must tackle this starting today and somehow I need to work out a way of getting it all done by the end of the week. I like a challenge - obviously...

Living Beyond Cancer

This is a good UK resource but I reckon as applicable as anywhere else. Interesting that Neil, aged 51, same age as me, felt victimised in his workplace. I felt that people took a very different view of me after diagnosis. Click on the image to go to the site.

About Time Too

At last someone is doing something about the other side of cancer not just the treatment.

http://news.bbc.co.uk/1/hi/health/7752247.stm

Rip Van Winkle

Yes - another 12 hours sleeping and I generally have another 1 to 2 hours in the afternoon too. It is getting kind of strange that I should be this knocked out but then again, perhaps the body is repairing itself. It makes you wonder what on earth they did to me.

It is a friend's 50th party today so I was left to cook some of the cocktail sausages this morning. That surprisingly easy task has left me tired too. What a wimp :-)

At least I don't have all the heavy headed cold symptoms anymore to contend with. Mind you, can I cope with a night out again?

I'm also seriously toying with not going back to work on Monday - I really cannot see myself being ready for that by then. I cannot sit at my desk for longer than about an hour at the moment - what chance of a full day at work?

What the hell did they do to me?

I have to ask quite what they did to me this time. I know they've told me before that as these are biopsies they tend to do a belt and braces approach to the samples and dig far deeper than they would if scraping off a layer or two of cells when doing a TURBT.

But hey guys, I shouldn't be feeling this beaten up almost 2 weeks on? Whether they cut deep, bent me into shapes that aren't normal, strapped me upside down or whacked me with a massive General Anaesthetic only they will ever know I suppose.

I can't believe how lethargic I am, how weak and just washed out.

There is another explanation someone floated. It's like the end of a long race, like a Marathon and you've crossed the line and now you are exhausted and catching your breath. That is another explanation that is plausible. I can see that when you get to the end (or supposed end) of something like this you let your guard down and succumb to fatigue or something like it. It's almost like that - utterly knackered :-)

Anyway - I look back to my last few weeks of posts and find that I am bleating on about how rubbish I feel but other people are far worse off than me. I need to get a grip on this - I'm beginning to turn into a whinger and I don't like that.

Doesn't seem to be getting any more predictable

I again slept for 12 hours or more. I suppose my body needs that to repair and I still feel out of salts and a bit lethargic. I can't believe that my shoulder and the top of my hand still ache as much as they do even 11 days on.

I got my letter from the Hospital today as well. Now here is an even more bizarre thing. I was told that they'd see me in 2 weeks or so given the holidays, so Mid January. Now the 19th February 2009 isn't mid January - in fact it is almost 2 months from when I was discharged. So I've written an e-mail to the Hospital just checking out whether they really meant that or whether they meant the 19th January. It can be read in a good way if it is the 19th February if you think about it. So I'll see what they come back with.

In the meantime I am trying to get myself motivated to get going today and once again I find that I really don't feel up to it.

Hey ho... Maybe later - I work better under pressure :-)

Curiouser and curiouser cried Alice

It's late in the evening, I've just had a lovely call with my relatives in New Zealand which was totally out of the blue.

But what is very strange indeed is that now, I feel fine, my head has cleared, I can breathe normally and I feel much lighter and ready to go and do something tomorrow. How quickly things swing around. It is a bit strange this coming and going of symptoms.

I'll see how I am tomorrow - I do hope that I'll be able to crack on and do some work.

Strange

I had enough medication to make it to see in the New Year but went straight to bed after watching the London fireworks on TV. I slept for 12 hours. I felt better when I got up and I have been taking it easy today. I've had a little bit more medication.

It felt like a small bit of Flu but I reckon my immune system beat it overnight. The problem is that it is another day that I haven't been able to do anything constructive. I've the odd cough and I feel a bit weak - I certainly don't feel up to getting on with some brain work - I can't concentrate long enough. I am just sat here tired and whacked out.

Feel Like Poo

I have had a really bad morning and this afternoon have had to admit defeat and just sit in a darkened room. It felt fine this morning and this afternoon I feel all Flu like again but not enough to go to bed with it but certainly enough to take some medication and have a few hours sleep in my chair.

I wonder if my Immune system is fighting off a bout of Flu or a cold as it isn't coming out like a normal cold or Flu. Slight sore throat, slight cough and so on. Weird.

Things Have to Change

I looked back at this time last year and the year before to see how I was feeling and actually the same theme runs throughout. This time last year I at least acknowledged that I was clear and about to have another lot of BCG with a biopsy operation in April. The year before, I completed my first lot of treatment and still had CIS as far as I knew then - in fact it was downgraded to precancerous (ie not cancer but deformed cells).

I'm surprised that things are similar to last year and in some way to the year before in terms of outlook and wanting to move on but being unable to decide what moving on actually means. Each year has seen great strides forward and as far as I know that remains true today, if the biopsies are clear then I have been clear for over one year and in reality more like 18 months as I didn't have cancerous cells in April 2007 either. This is a massive positive - I will wait until I am told officially but unofficially (and they haven't been wrong so far) an all clear does make a big difference going forward. Will it be enough to make or even know what changes I think I need to put in place? I suppose I'll need to tackle that in the New Year.

I've been thinking a lot about the next steps and there will be a blog about it when I have completed it. I find it the most difficult thing but perhaps it is the most important too.

For example I am trying to address:

• What do you do when you get your life back?
• Where do you go from here?
• How do you live with the uncertainty that it may come back and you'll have to go through it all again?
• Do you HAVE to make a difference or can you just go back to normal?

Juggling with the various scenarios "does my head in" and so I am spending a fair bit of time trying to rationalise it out. Everything is up for review and options need to be worked through - hence it will take me a while to work through it and eventually blog about it.

Feel worse today than yesterday

I've been out a week and I feel worse now than at any time. I slept in until 11:30 when my Mum, bless her, phoned. I can't sit here much longer - I've done 30 minutes and the space inside my pelvis is re-arranging itself back to where everything should be in order before they stirred it around with a big stick. It is the strangest feeling, not uncomfortable or painful, just strange. Having said that, I still don't want to be sat at my PC all day - even though I should. I think I will go downstairs and use my laptop and try and do some studying or catching up with the history document I am writing.

The time compacts up doesn't it? I have no idea how I am going to fit all this lot in properly in the next week and a half. I'm sure I'll manage it somehow - I always do.

Only hurts when I cough

I have an occasional cough which really rattles me about and hurts my stomach and groin area. I'm guessing it is the general anaesthetic and my body getting rid of it - there is no cold to go with it. I've taken a few cough sweets which has temporarily relieved that. It has been a strange day as I've been trying to get up to speed with my work and yet I can't sit down at my desk for more than an hour or so and I managed to fall asleep again ts afternoon for a couple of hours even after having plenty of rest last night.

I want to be fit and back to normal now but the reality is, it is taking much longer than I remember or want it to be. It sort of backs up my view that two things happened here. My Consultant told me this (if clear) would be the last lot of treatment and, as I understand it, it should be the last set of biopsies taken as an operation under a general anaesthetic. She also told me that in taking biopsies, they go deeper into the Bladder Wall to make sure that things are clear. If they have thought these are going to be the last then I'm sure that they would have gone deep and also there is a possibility there are more than the standard number done if the apprentice had a go and did a partial job.

So whatever it is I've got to get on with it and recover, it is just annoying that I am not quite as well as I want to be and that I just cannot get on with stuff that needs to be completed.

I have so much to do and it is frustrating to find myself unable to do it. I know that I should be happy enough that I'm in a position to moan about it!