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!

Bad Day

Obviously it is too early to sit at my office desk for as long as I did this morning. My stomach is hurting, as is my hand and also where that thing came out of my shoulder. In fact, today I've felt as bad as I did this time last week as I was coming around. My shoulder aches and my urethra - well it is probably trying to settle itself back into its normal position :-)

I fancied going out tonight but in reality I don't want to be sitting on plastic seats or walking around much as I feel worse today than I have all week. How bizarre - all catching up on me no doubt and payback isn't comfortable at all.

I'm trying to get back up to speed with my studies and the work I was doing before last week. The trouble with that is I still cannot concentrate for long - I get sleepy too and so as much as I'd like to do a blitz and catch up, I am forced to do lots of small sprints to try and get things done.

BCG Tolerance

Interesting thing, thinking back on it and chatting to the Registrar last week. He, and in fact many of the Registrars, Doctors and my own GP, were really interested in how I got on with the BCG. I was told early on that it would be pretty severe, not to travel, not to fly etc. I was doing long journeys at the time but was warned off.

I reckoned that they were challenging and when I did get a bad one - it really was bad but that was early on when I hadn't worked out what to do. Stupid me was trying to carry on working afterwards and the next day when I should have been lying down. I didn't prepare properly and so on. Once I worked that out things got easier. To anyone who doesn't have to have these it is without doubt the most horrendous sounding treatment to have, especially how they deliver it into your bladder but, as much as you can get used to it, you come to accept it. It is, after all, saving your life and so if you look at things that way then you can deal with it.

It is a strange thing to say that it was OK for me and some people really suffer with it and take a lower dose. I've had 24 all full doses but I'm comparatively young as most people get BC when they are much older and cannot tolerate the sorts of treatments we are talking about here.

I'm just surprised that the Doctors are surprised about the way I tolerate it. I suppose they are told by many patients how bad it is.

I've kept detailed notes about the BCG treatments and the side effects and in a way looking back on them, the first two sets of treatments that were actually killing off the cancer were pretty rough and not nice but I honestly expected that I'd be lying in a heap for days, vomiting and not being able to eat and a pile of much worse stuff, I didn't expect that I'd even be able to walk properly or be up and about but I was OK after 24 hours generally. When I hear of how Chemo and Radio work I tend to think I got away lightly. But again, if you haven't "HAD" to go through it, it still seems terrible.

I think I need to think more about this to do the subject justice. It is, in my opinion, a balance between what is acceptable in terms of cure to you. The IVU X-Ray really made me feel very ill indeed and yet these BCGs made me feel bad for a short time but just look at the results.

1 Week On

I'm still feeling it - gee they must have pushed and pulled me around a fair bit last time. It feels as if they gave me a TURBT not a Cystoscopy for biopsies.

I am definitely a lot more tender and can actually feel where they pulled me about. My stomach muscles and that whole area feel strained and tender. I'm not sure how much that is also me getting out and about and carrying on as normal as well of course but I think you tend to notice these things.

I've decided to see what I can do to get my computer sorted out today. I have set up my e-mail on another computer (I have - no sorry had 3 so 2 remain). I need to set up some of my other e-mail accounts and to do a review of what I think is missing. I do tend to back stuff up all over the place and to have files on more than one computer. I also tend to do 2 back ups of everything and so, in general terms I am OK but anything that I have done since the last back up will be lost for sure.

As usual there is the inconvenience of lost messages and files but all my photos and important stuff is always double backed up. I might take a friend's advice and do off line storage in the future.

You tend to forget

How knocked about a General Anaesthetic makes you. I went out last night and again it was a nice do and lots of party food and beer etc. The trouble was I was really noticing it yesterday. The thumping pain on the back of my hand from where the Cannula was inserted and the bruise coming out now are reminders as is the very slight stinging whenever I go to the toilet.

Yes - you forget how knocked about you are until you start to get tired out and also how you sleep for longer and feel like sh1te. My throat is still a little sore and I am still making sure that I am drinking plenty of water. The problem with focusing on anything for a long period is also manifesting itself as I just cannot get the enthusiasm together to go and sort out my broken Laptop. I've tampered with it but it does look terminal to me as I cannot even get the hard drive to spin up!

Oh well - perhaps tomorrow and my head will be a bit clearer and I wont feel quite so exhausted.

Tired

Dazed and Confused. I succumbed to a long lie in yesterday before finding the Laptop had expired. A bit of a blow is that as under normal circumstances I'd have backed it up recently. It is my main e-mail client so I've lost my e-mails for the past 2 months at least.

I'm doing OK with this ongoing stream of events. I find we have another one today to go to but that should be it until the 3rd January. At least I'll have an opportunity to sit down today and rest. I've been keeping going and awake somehow but when I do get home I crash out completely. I think we are out in the evening so at least I get most of the day to sort myself out.

When I reckoned that I couldn't see where they had shaved my leg, I now notice patches of hair gone from my left leg. This increases my assertion that someone other than my Consultant actually did the work on me as it has always been my right leg before. I also know that it was the same Theatre as all the rest I went to.

The back of my left hand is now beginning to ache and bruise up but everything else feels OK. My middle areas stomach, groin etc are tender but not sore - I know I've had something done to me but other than that it is OK.

The dreams appear to have subsided and the only really recognisable difference in me is an anger about the way they went about this at the Hospital. Not my Consultant's fault - just "the System" and the sheer number of sick people in Hospital at this time of year. I do hope that the results are such as to ensure that I no longer need to go in for this level of surgery again.

Not good

My Laptop Computer appears to have died. That will make life interesting as I was about to do its back up earlier this week and didn't get around to it. I'm trying to work out what is on there that I need and I think that probably includes all of the latest work I completed on the history I was working on. I now need to check whether I put that in a share and where that shared area was. It could make next week very interesting indeed if I am trying to complete a document that I have already written and lost.

Oh well, it is a bit of a pain in the ass though as I just realised that I had put a list of people on it but can recover that from a friend.

Life without IT can be a challenge.