I may be repeating myself repeating myself

I had a long chat with my mate again today and we were commiserating about our current lack of physical and mental strength and the things we are doing to pull that around.

It isn't crushingly depressing or a feeling of being totally wasted. An imbalance perhaps we felt, listlessness and tiredness. Then there is the get up and go - which has done just that and got up and gone :-)

He is getting a lot of physiotherapy and nutrition assistance. I'm not but it is interesting nonetheless how similar we are feeling and when you consider that we both went through our procedures within weeks of each other, it makes you wonder whether there is a pattern to surviving or perhaps comabtting cancer. We are in a similar state time wise but he had far more radical surgery than I did and he no longer has to worry about whether or not he will get cancer back as there is nothing left there.

And our conclusions? Well - We went through the experience and we have changed (a lot) but no one else around us has changed. It is difficult to carry on as normal when normal is no longer normal to us. It is like entering a very slightly parallel universe. Only you know you've moved slightly out of synchronisation with everyone else (like a badly dubbed movie).

It is a most peculiar thing to explain but it does feel as if day to day there is something not quite right about things - perhaps we feel we shouldn't be here or worse still - we felt we may be "frauds" as we didn't have all the hair loss and bag of bones looks so many people seem to believe that you should when you have cancer?

Anyway - it gives us plenty of reasons for talking and going down the pub so that is alright then! :-)

Further exploration of the dark side

The Black Dog - as my friend explained is now called Toby. The Black Dog visits every now and then and I suppose is his version of the black or dark cloud or the grim reaper or some such thing.

When the Black Dog turns up you can:

• Burst into tears for no reason at all
• Get all choked up watching emotional stuff on TV or Cinema
• Get all choked up when you see someone achieve something (like an athlete winning) you know what they went through in a way
• Go very quiet and hide away from people
• Have to get out of rooms quickly when you get all emotional
• Act less than rationally when confronted with something slightly out of the norm
• Get horrible dreams about things that happened, haven't happened, aren't likely to happen
• Wake up in the middle of the night and cannot get to sleep - then wonder why you feel so tired when you are at work the next day but you still can't sleep when you get home
• Start to worry about what may happen when it hasn't happened and may not be likely to
• Worry that any ailment whatsoever is cancer of whatever area of your body is suffering at the time (this can get tiresome). Have a cough or a sore throat or your arm hurts or you get an ache and immediately it is cancer (I kid you not when you are in this sort of mood everything is like this)
• General malaise

I'm sure there are lots more and the level of these emotions goes from mild to extreme. They can come and go with alarming speed. The Black Dog can get you when you least expect it to.

It happens less these days of course but you get occasional visits which can take you unaware and shake you to your core.

My recent nightmare? I'm being led out to the scaffold to be hung. Preacher and guards and all. My crime? Apparently I survived - that is it. That's a pretty shaky one to wake up to and I've had this one at least 4 or 5 times this past month.

You don't really need that sort of thing but your brain decides that you probably do and torments you with it anyway.

I'm certain that it is quite normal for survivors to go through this sort of stuff and so I'm not worried about it but it is worth saying it happens and it is something additional to watch out for.

On a lighter note

At least the internet hasn't gone down for 6 days now!

Exploration of the dark side - revisited

It was strange talking to my friend last week about how work was running us down and that we weren't as fit as we thought we were. To look at us you wouldn't notice but long term things like stamina both mental and physical aren't there.

It is easy to drop into a state of "being the victim" which I know sounds crude but is meant to be the state of mind you get into sometimes. I think people survive things because they believe they can and there are documented cases on that - not too many on those that just played the victim though I guess. Things like the job the lulls and the disappointment - yes disappointment of getting back to work. Things no longer meet your expectations and that includes work, family, friends, and just about everything else. You've gone through loads of stuff, you want and deserve better. That is what coming out the other end does to you as well. The only person that actually got you through it was yourself (sure there was support - but did you take the shots?).

I said before that there was a lot of "Self" in fighting the disease, a lot of me, me, me and the combination of all these things. It is strange that I'll be beating myself up for not meeting my expectations and I'll be feeling down because something didn't happen as I wanted or expected it to.

This stage of things is quite strange and I'm in this sort of no mans land at the moment. In a month I'll have my pre-op assessment and 5 weeks away is the next operation so I'm beginning to see that looming large on the horizon. I'll have to take it easy all over again and then wait for the results. Those results are pretty important this time as a positive result will get me onto maintenance. We don't want to know what a negative result will bring do we :-) So there's doubt there as well to contend with.

Will all this change the world? Probably not - so it isn't worth worrying about really!

An Interesting Web Site

Recommended by a friend of mine

An alternative take on your health

Mercola

Bladder Cancer Bioinfomatics Research in Australia

Perhaps some hope for future sufferers?

One to grind out I feel

This week that is. I'm a bit better than I was yesterday. It is like walking through treacle at the moment. Business is so slow but it is peak holiday time and so it is to be expected but it would be good to get some momentum going and get something achieved.

It looks doubtful that it will happen this side of the weekend and so I'll keep plodding away and perhaps next week will be better.

So how am I feeling?

I'm not feeling particularly confident or my usual buoyant self this week. There just seems to be so much to do and I really cannot be arsed to do it. I'd be quite happy to take the rest of the week off and start again next week.

SO far just about everything I have touched has turned to poo :-)

I'll probably feel a bit brighter in the morning.

Slow slow week

Some people still on holiday and some back but catching up on what has happened whilst they have been away. It makes for a long hard week of little or no contact, people not wanting to answer phones or call you back.

It is going to be one of those weeks I am afraid.

Crossroads / Decisions / Future Directions

Yes - it is that time already.

Almost three months are up soon and that is the decision point I set myself on this new job.

I need to make and take some key decisions soon as I ought to be thinking whether I want to have an easy life, an exciting one or just "retire" now :-)

Procrastination sets in already and I'd like to give myself a further month because of all the time I lost with the treatment and the loss of Internet service.

Do I need to convince myself, those around me, you or all three?

That sounded worse than it was

The previous post that is. It wasn't meant to read quite as depressed as it did.

I'd had one of "those" days when I wrote that and was on my own most of the time. Today that won't be quite the same as we are all going out later to a friend's barbecue.

I suppose it did expose some of the frustrations of everyone else getting on with their lives around you and sometimes no one knows what you went through. That's my problem by the way - not anyone else's.

The Importance of being Me..

I realised more today than for a while quite how "lonely" I am. I'm far more insular these days than I was whether by design or accident. I long for some attention but if no one understands what to say or how to say it to me then it may prove difficult.

Friends are fine and are great to be with, not being with your family for hours at a time is not so good. I'm normally happy with my own company but today I could have benefited with a few more minutes of seeing the family.

Saturday

Bored stupid today. Everyone doing their own thing, I've given up getting the PC to record a video properly - I have no idea what has happened to it - it used to work fine. I really cannot be bothered to do much about it or to fiddle with the settings yet again.

It is too nice outside to be in so I suppose I could go and sit out there and read a book. It has been one of those weeks I think, I've taken a lot out of myself and I don't really want to do anything at all and yet I've this nagging voice at the back of my head chastising me for having a lazy day.

Further thoughts on the dark side

Strange as it may seem, I tend to get quite long periods of feeling down and equally long periods of being very upbeat. What I also get, and this is the more disturbing, are random thoughts and almost taunting, cruel thoughts at any time of the day or night, without warning.

The darkest and nastiest being things about how that little cough is probably lung cancer or throat cancer or how I've somehow let somebody else down or treated someone bad or that sort of thing. It doesn't sound like much when I write it down but these thoughts are made up in my own head and you'd have thought that I was cursing my worst enemy the stuff I think about.

I think we all think things that are critical of our behaviour or things, that with hindsight, we could have or should have done better at - but this is nasty stuff. Down to "you cheated death" and that sort of level!

I don't know if beating yourself up mentally is part of the normal territory - I think it probably is. It works on many levels of course and flash backs and re-living things is one, putting stuff out of your mind is another and this taunting is another. I'm sure I'll think of some more stuff as well.

Somewhere there is an upside which is the relief at getting over some of the horrible stuff. I'm also feeling that more now than I did at the time, either I need to as I shut it out or I've heard so many people telling me what horrible things happened to me I am beginning to believe it :-)

I'm glad I only did people and work psychology. All this stuff may mean that I need a shrink :-)

You don't get counselled

My friend and I were chatting about this and whilst he was told a lot about his condition and what was going to happen he had plenty of information about the procedure and the recovery but very little about the emotional side. His cancer would produce perhaps a more emotional response as it would affect his life and activities. I had an inkling what was going on but I learnt more afterwards. I was told enough to know what I had and what was going to be done in my TURBT operation and also the IVU. So neither of us received a "here is how this will mess with your brain" talk.

At no point though did anyone one talk to me about "living with cancer" or what it means to me or what I ought to be aware of. It is different to other things you get as I've mentioned before, it isn't as if you have one operation or two and that is it. There is something far deeper going on. The dark side (OK I sound like Darth Vader) but there is a lot of mental stuff to deal with. It isn't like those movies you see. There is the healing process of the body and the mind. However, you just get on and deal with it. In fact - I'd have liked to have known a little more. I knew enough to know what I was going through at the time but not what I'd go through afterwards. All of my knowledge has been gleaned from the Internet and downloading some very good NHS and other pamphlets.

But nowhere have i found the bit to deal with how you react to this yourself and how you affect others around you by your behaviour.

It is almost as if it is an elitist club - unless you have had cancer you have little idea what someone has actually gone through. I couldn't imagine what it would be like to have gone through what my friend had but some parts were common and not nice. To have had any of these things happen is bad enough but to experience the dreams and thoughts and dark moods are a part no one tells you about.

I've always viewed "counselling" suspiciously but having now been forced to sit on the other side of the fence I can see why it can be useful.

Here we go again

The Internet went down again last night and I eventually managed to get things restored about midnight. The disruption this causes is amazing as so much of my work centres on having a stable IT environment to allow me to do my work. Whilst I have a number of PCs which I've logically separated into various businesses and personal the effect of not having the internet on the way I use my applications and the way not having the internet destabilises those applications does make me acutely aware of how much we or perhaps I rely on technology to be able to do my job.

Maybe I should pack it all in and go back to being an electrician? Mind you I'd probably need digital test equipment and a PC to do the work there as well :-(

It could be an interesting deterrent for people - if you do anything wrong they would take away your satellite TV and PC connection and mobile and land phone!

Cheered a little

I went out with a friend who also had surgery for cancer at about the same time. He is still recovering from the actual operation but has no cancer now.

It was a nice lunchtime meeting in this dismal weather but I was interested that he is also having a bad time at the moment, dreams and nightmares and lots of concerns and worries.

It must be something to do with cancer and how last year we both refused to believe or worked out that all the nastiness was happening to someone else. Perhaps now - it is dawning on us that we had pretty serious things happen to us which were a lot more than we made out.

We also concluded that we were quite different people now, less tolerant of stupidity and time wasters and less worried about things in general. The trouble was that we were probably beginning to show that to people and were becoming quite dismissive of some of them.

We sort of concluded that you probably wouldn't have thought like this unless you had been through the stuff we had. Expecting anyone who hadn't had cancer to understand what we were feeling was quite difficult.

Not having the greatest week

I have to admit to being somewhat down in the dumps these past few days. I'm concerned that the job isn't going as well as I'd like it to but it is holiday season and people aren't around and no one wants to make a decision.

Additionally I'm sure that the sheer frustration of my PC problems and also the phone went on the blink yesterday also contributed to a pretty dismal August - the weather isn't helping either.

Getting things done is like walking through treacle at the moment. A bank holiday weekend coming up and so perhaps I should just abandon all of these problems for a few days and come back "refreshed" ready to sort it out on Tuesday?

6 hours

It is 2:30 or so in the morning and I have been waiting 6 hours for my PC to burn a DVD - that is not how long it took to put the stuff into the program it is how long it has taken to encode it and finally burn it. However, feeling the heat coming out of the fan I decided that I couldn't let it run unattended.

I hate IT sometimes.

Who would have thought

That in this day and age it would be so difficult to get things done? So far today it has taken some 6 hours to download 40 minutes of digital (digital) video, convert it and burn it to a DVD. I have enough computing power at my disposal to tackle most thing but (apparently) digital video manipulation is different. I've had codecs interfering with converters and I've got AVI and MPEG files all over the place.

I'd like to tell you what the DVD actually looks like but so far it has taken an hour just to encode it!

You certainly don't want to hold your breath on these. It used to be easy with VCR - plug in the camera, turn on the tape - job done. DVDs need chapters added and encoding and converting and all that good stuff.

It never ceaes to amaze me just how difficult we can make easy things. Perhaps it is the IT industry doing a "Jobs worth" on us?