Tuesday, February 12, 2008

A quick post

Before I go out and meet up with the lads. I deserve a beer, I really do. I need to make sure that I am also quite near the toilet too :-)

No really - it will be good to meet up again - it seems ages but is only a month since the last one. I hope to get some good data out of one of my friends who is self employed. One of the key things I got from the weekend course was that it may be worth me doing that than having a company behind me. Of course that opens you up to liability issues but the business isn't one where I will be buying massive chunks of equipment or owning anyone money so it shouldn't get to that.

Anyway - I'd better go and get ready and make my way over and enjoy a few glasses of warm british beer.

Treatment News

So yesterday was the last of this batch - my goodness I have had 18 of these - I'm sure the Urology nurse has seen my tackle more often than the wife :-)

Anyway - so I asked what the next steps are if all is clear:

Another batch of BCG like this one - which is 3 followed by a 9 week wait and another 3 and then operation and biopsies 12 weeks later. If that is clear, repeat the same one more time. If that is clear - then that is it! No 8 years worth and longer periods in between operations etc. I imagine that there would be some visual scoping and tests along the way.

That was a surprise - I was expecting a lot longer but modern practice appears to be this regimen. I could be finished with all of this around about this time next year in that case. Amazing.

A change in the wind

I am up, I am hurting (you'd better believe it) and I'm feeling good about myself at last.

First, the treatment was instilled quickly and easily and with minimum discomfort - better than the previous two but the side effects this time were immediate and started bang on 2 hours in. I am pretty uncomfortable right now as not only is the area sore but also there are occasional spasms of my bladder and urethra. Interesting and these things are strange - imagine if you have had a muscle spasm or twitch and then transfer that downstairs - a very strange sensation (where do you change the batteries?).

So I am going to leave his PC alone and go and rest up in a few minutes as I know I need some rest - I should have stayed in bed longer but someone put the phone back in my room and someone called about 45 minutes ago so I was awake then.

Other than this - I am feeling a lot better knowing I don't have another one of these next week and that things seem to be changing, my outlook is better and I notice that I am beginning to look outside of my own little world which I've lived in for quite a while. I am not feeling so thunderously depressed as I was and the weekend seemed to do me good - perhaps I had someone who had suffered the same stuff as me and so I was able to get a lot of it off of my chest. It was very therapeutic and I feel like a huge weight is lifted off me. I also think that the course I went on also made me confident that I could make a living at it and that I could be successful (not being nasty but a lot of people hadn't thought it through before they went).

I've written off for details of a BA Hons History Degree that I think I'd like to study and I have the details of the Professional Genealogists course too. If I can make the figures stack up, then I will look at this if the other job that a friend has lined up doesn't materialise.

So whilst I am not feeling great this morning physically I am feeling very positive mentally - more so than for a long time. Long may that continue.

Monday, February 11, 2008

The Unsung Hero - Heroine actually

Is my wife. Today she will run me up to the Hospital and double park to wait for me to have my treatment, she drives me home, keeps an eye on the timings and puts up with all the side effects such as me being grumpy or tired or lazy or sleepy or wide awake or insomniatic and just about everything else. I can't imagine that it is great to see me in the state I'll be in later today or to hear me grunting and groaning every-time I try and move to make myself comfortable.

She has never once complained about it, she has just got on and been there all the time and she has cheered me up when I've needed it too.

I will have to start acting as if I deserved all of this attention.

Right - off to get ready for the last one this session - I'm sure that I'll be back on this stuff again in June or July if all goes OK with the Biopsies.

Suddenly it is all matter of fact

I was just reading the previous post. It sounded more like a press release than me talking. Such is the ongoing normalness of such things like treatment and operations that it is just something that happens to me now.

Before I used to be all wound up about it but it appears to me to be part of my every day life now.

My friend in Canterbury asked me if I feared anything these days? I thought that was a strange question but I was able to answer that no I didn't fear anything now. I can still get angry or anxious but I don't fear things anymore. There is probably a good reason behind his question but there is something quite refreshing about being a cancer survivor. You don't take prisoners anymore and you deal with shallow people in a very assertive way. You don't worry too much about things - what is the worst that can happen?

Having said that - I am pretty bent out of shape by the stuff going on around the Tribunal but again, what is the worst that can happen? The worst that can happen is that I lose the case. Is that fear or just anger?

Anyway, I am just surprised at myself for being so matter of fact about getting the treatment, having an operation and all of that. That is a big change in less than a year.

So here we are - final treatment of this session

Count three months from today - about the 6th May - and I should be in Hospital getting biopsies and we will see just how effective things have been. The longer you go without recurrence, then the greater the chances are that you are winning the battle. There is chart somewhere that explains all of this but, it generally shows that your odds of recovery improve greatly as time goes on and there are no set-backs.

By continuing to treat and then pulling that out over a period of time the treatment continues to renew the bladder lining and so lessen the chances of recurrence.

Anyway, final treatment and in a few hours I'll swing into the usual patterns and rituals to see me through the day. The last time, this third one proved to be the worst of the 3 so I will again be on my guard. You have to treat them all with respect.

Not a criticism - just an observation

When you get Cancer - your friends are too close to you to know what to do about it as they have been hit about as hard as you have (in a different way). SO I don't want it so sound at all as if it is a criticism, in fact, I only realised this the other night talking to my friend in Canterbury. Those nearest and dearest to you get thwacked with your Cancer diagnosis themselves and they have to deal with it too. I'm annoyed now that they went through that and that it has taken me this long to realise.

What was amazing was that those who I knew well but I wouldn't put them into family and friends category came in closer whilst the close ones moved away slightly.

I'm not sure that this post is making sense or being sensitive enough about this. Just an observation that in getting my diagnosis it hurt the circle of my friends and family. It didn't send anyone into misbehaviour (apart from me) - I don't think anyone got angry or bent out of shape about it, we don't do emotion as a family and it is rare that voices are raised or doors slammed etc. My friends have been great but I hadn't thought that my diagnosis and treatment would upset anyone else but me - it does tend to be a personal and selfish experience in my humble opinion. It does affect other people around you and we all deal with it differently.

I'm annoyed with myself for not seeing this until now - sure - I've had lots on my plate but it isn't at all like me - I am pretty good about this sort of thing. Some would say that I was superficial but they'd just be scratching the surface!

All is OK now - I think that it is just an interesting subject to explore a bit deeper when I get time. I never asked anyone else how "they" felt about it as it seemed to be so personal to me.

Sunday, February 10, 2008

I've been so often I didn't know the half of it

I have been to Canterbury a lot of times. For the Cricket - for work but not since I was a youngster have I been in the centre or in the wonderful surrounding streets.

I was a lovely walk to the IHGS offices through some period streets, buildings all out of square and regular shape as they sag with age and display a character new buildings just cannot. I shall have to take myself off to Canterbury again, armed with a camera and a good guide book the streets should come alive and tell me their history. It looked marvellous and I eaves dropped a number of tourists and their guide talking about one building. Fascinating stuff.

It isn't that far from me but takes a good 1 1/2 hours on the train. It takes that long by car too unfortunately. However, the whole town looks great - the traffic has always been a problem and I think I have spent more time on the ring road than in the town.

So there you have it - another wonder explored and a place to go on my to do list.

The course was a useful one I thought - you needed to contribute and yet not too many people did. I felt that a number hadn't really thought through their business strategy and were somehow hoping that by a miracle it would all come clear and they would go home and start trading in Monday. In reality I actually felt I could start trading on Monday as I have already covered off most of the bases. I Won't of course, as Monday and Tuesday are probably going to be spent in a darkened room with the last of my current batch of treatments.

Anyway, having met A's mentor and had a longs chat and having done the course and seen those who I am up against as potential competitors (and having met those taking the course) I can see that there is a market to be achieved out there and it just needs a few more major decisions to be made as to whether to incorporate or not or whether to trade in my own name (self branding no corporate branding) that needs to be decided. Having an interchangeable or two businesses is also a possibility but then there are two set up and admin costs and split equipment charges etc. All very confusing and perhaps the most difficult decision to make.

Thought Provoking

An interesting day and lots of information that I can say I already knew - perhaps 80% of what i heard was as I had expected. The 20% though was interesting. Afterwards I spent a great evening with someone who I have a lot of time for and that I am growing to like more and more. A's mentor in the photographic world. A lovely guy and a kindred spirit. Isn't it great when you meet someone you can relate to and share similar experiences with?

A good day out in Canterbury and I'll say more as it sinks in - for now - it is late and I need to go and get my beauty sleep!

Treatment day on Monday and that is the lot for a while - yippee!

Friday, February 08, 2008

Looking forward to tomorrow

Off to bed now as an early start and I am looking forward to having a day of working out whether I ought to be doing family history research or not. It will be interesting to hear what others have to say about it and whether there is a living to be made or whether it is all just so much wishful thinking.

Well - I'll find out tomorrow.

Come on Brain!

The one thing that I have noticed is how "slow" and forgetful I am these days. It could be the treatment it may be the Statins it may be just old age but blast it all, I forget things that I never used to forget before! Like making a phone call that I should have done this morning - my alarm went off but that isn't a lot of use when I wasn't even anywhere near to hear it go off! I've just recalled that I should have been doing something. I thought perhaps I should be out somewhere or doing something and when I went to look, there it was a missed phone call. Blast it!

If there is one thing I miss it is my previous ability to have all my tasks worked out and to tackle them - these days I write out the list and promptly forget where I put the damn thing!

Anyway - I am looking forward to tomorrow so much. I am off to Canterbury to go on this course and I will see how I stack up against the competition and what the "experts" reckon on taking up a researchers role. I have printed off some business cards as a temporary measure so I can hand those out and start networking early. I just need to check train times and get my stuff together for the morning and I can go off and enjoy myself. After the meeting I am going to be going out for a few beers with a very nice guy who is helping my daughter with her photography and lets her use his studio and facilities. As he wont allow us to pay for the materials I ought to at least buy him a slap up meal and a beer!

Friday again

Where did the week go to again? It is Friday and suddenly another week has gone and I couldn't tell you where the time went.

I fixed my CV up this morning and whacked that off to my friend. Let's see what they make of it? It is amazing how many really interesting and complicated projects I have been involved with over the years. I was quite impressed once I wrote down a list of some of my achievements. I haven't put them on m CV as they aren't recent and yet - these are all household names and well known businesses and buildings. These days, the recruiters tend to go on the first page only of your CV - you could turn water to wine or make gold from lead and they wouldn't notice it :-)

It will be interesting to see quite what they make of my experience and also what sort of value they put on that level of experience and expertise. There aren't too many have sat on both sides of the fence or who fully appreciate the needs of the builder and the IT personnel too.

Way over left field

Well that was a bolt out of the blue. An old friend of mine just called - they are looking for someone who has a good background in construction and computer room design and implementation and also has good IT skills too. Strangely enough, there aren't too many people can do all the building work and understand the IT piece too. Can I send my CV in tomorrow? Well I suppose I can and see where that goes. It is a bit strange as there have been a number of e-mails and phone calls with people after my services.

I ought to follow this one up as it is a massive corporate and household name and that in itself would be interesting to me. It wouldn't do any harm I suppose to go and look at it at least. Perhaps that is what I need in the short term - someone to think for me?

I got a lot done yesterday - I am still up because the oldest has been out to a concert in London and has just got back! She seems happy enough as the band gave away some freebies and she got a handful of them - the freebies that is!


Still no news about Chicago although the registration has now commenced there is no program published either as of yet. I hope I hear soon as that will also determine what I do this year too. I can then get to and plan what I will do about holiday/vacation in and around Illinois. Buffalo/Niagara and Rochester are all within striking distance so perhaps spend some time driving around the lakes.

Anyway - it is late and I need to get off to bed as I have to get myself ready for Saturday and my course and work out train times and so on.

Thursday, February 07, 2008

Breaking the bonds

Gradually I can feel myself making positive progress forwards. I'm not quite as focused on the baggage dragging along from the past at the moment, maybe because I have done something about it? This morning feels a lot better and I don't know, perhaps as I actually talked to someone about it last night or that in a week their response to the tribunal should be through and things can move on. Production of some hard evidence would be useful I suppose.

It was a good night out last night - I really enjoyed myself and the only thing is that this morning I still ave this sore throat and very very slight cold. It is just there in the background - I expect the immunotherapy is beating it up as we speak!

Lots of things to get on with today and I've already sorted out one batch of letters and posters to send out for the Easter Egg hunt which is looming large this year.

I now need to get cracking on a load of labels and addresses for a mass mailing I have to do - thank goodness that most of the stuff now goes out by e-mail.

Well - I'd better go and get stuck in to that I suppose.

Wednesday, February 06, 2008

So many things to do, so many excuses not to do them

I got the table plan and dining cards sorted out and then two people cried off so had to re-do the lot. It is too late now - if they can't get their act together then so be it! They will just have to be sat where I put them and tough luck.

It was quite amusing some time ago when someone forgot to tell me until the day he was dining and I put him out of order with his rank and position - after the meal he was quite indignant. To which I used the now famous words "Did it make your food taste any different?" and "Well, it was hardly life threatening now was it?" I believe he may have complained about me but who gives a toss! Life's too short.

Talking of which, I still cannot get my a**e in gear. It is just so easy to get distracted or lose time over the day - it just bleeds away - a bit here and a bit there. I've been mucking about with this dining plan for about 3 hours. It should be a 45 minute job at most. I've spent time reading some blogs, looking at a few web sites. OK I did a little bit of research on shopping carts for my potential new business too but as my old boss used to say "Never confuse effort with achievement".

Mind you, I'm not feeling that bright and have been yawning most of this afternoon and have taken tablets for this sore throat which doesn't seem to be going away although (touch wood) it isn't getting any worse either.

At least the meeting this afternoon will cheer me up.

Slightly Empty yet Overloaded

I saw a blog post from someone also with BC who was in "burn out". They'd got to a point where they had information overload about their condition, had lots of recurrences and more procedures than you could count on two hands. The upshot was that they were just staring at loads of paper, reports, and their job was messed up as there was no continuity through the amount of time off. Finally, they had been concentrating so hard looking inwards that they had forgotten everything else that was going on around them. That's about the time I reckon I'd just go and lie down somewhere or try and get a break.

it made me stop to think and consider that this is a lonely disease and quite an introverted one at that. I have this blog - it has been really good for getting stuff off my chest no matter how trivial it may appear. This is an outlet for much of the anger, aggression, sadness and minutiae of the things I go through. I can see that there is a build up of negative energy in the way things have panned out for me. I'm particularly disappointed that I never really got to celebrate being given the all clear and that I cancelled a lot of things for the business (and I use that term in its loosest possible meaning) that I worked for. I had a lot of focus last year on that and it took my mind off of what was going on here. I was busy and up until the end part enjoyed that. I don't have that enthusiasm at the moment nor can I get that sort of enthusiasm for this new venture. It is as if that spark has been extinguished.

What am I getting at here? Only that I begin to recognise the barriers in my way and the things I now need to overcome to get myself back on form and back to somewhere near my old self. I presently have too much time to think and analyse rather than getting on and doing. I hope that this weekend will convince me to either go or drop my business plans. Whatever way the decision goes, at least another hurdle can be navigated and things can move on.

I don't feel like I'm burnt out, I do feel like I am overloaded with detail and fact and that I am taking ages to come to decisions (not surprising considering the thought that went into taking the last job and the outcome so far). I am probably doubting my own abilities and I am still coming to terms with things round the disease, even now!

More as I work my way through this. It isn't new information, it is what I have been struggling with since December in reality. Oh well - another set of things to overcome and without my magic wand none of them will go away easily. Perhaps knowing what all these things are will make it easier to deal with - I certainly hope so, I'm not enjoying life at the moment, it is full of conflict (real or imagined) and I don't need that. I guess some of that will iron itself out in the next few weeks - let's hope so.

Dawn Breaks

The sore throat is still here but hasn't got any worse and the sneezes are at bay at the moment. I shall take a few pills to see if I can shift it as it is quite annoying.

I'm up early as I set my mind to it and I have a stack of things to do today - not least of which is to work out how to do some partial labels in a mail merge. That will be fun.

I'm off out tonight and have to do a table plan and sort out the dining and so that is also something to get on with.

I've been OK so far this morning - I still feel sore around my middle but no debris falling out of me so far today.

I will not overdo it today though - nice and easy with the recovery. Only one more to go and this time next week I should be looking forward to a couple of months rest before the next phase!

Onwards and upwards

Certainly - I have been taking it easy today and tomorrow I intend to get cracking at last and get some more off of my to do list sorted. Today I have taken it easy but i needed to as I have been having quite a bit of debris falling out of me and whilst things are a lot less sore than last week the debris tends to give off a little stinger every now and then.

I spent quite a bit of time on the new business plans today. I'm looking forward to the weekend when I go on the course run by the IHGS - Institute of Heraldic and Genealogical Studies. I think this will give me the "acid test" that I need to determine whether this really is a viable business opportunity or whether I am off on some dream. I tend to think that I can put myself to this, I certainly hope so and I really want to make a success of it if I do. After the course I hope to meet up with a friend and have a few beers and perhaps grab something to eat too.

I'm a bit worried tonight as I have been sneezing a lot and have a slight sore throat. I don't think that I have had a cold since July 2006! All this immunotherapy has seen to that. I need to be careful as it can be one of the side effects or, if I do have a cold, I have to be certain that they will let me have the last treatment - they don't want to confuse the side effects with a cold that looks like flu that is! Fingers crossed it is just me stirring up the dust in my office :-)

Tuesday, February 05, 2008

Ongoing Treatment

I was told a bit more about this as I explained that I was due for a Flexi but cancelled it (the right thing to do). Apparently, in the short term - no flexi at all!

I get the operation for biopsies and then further treatment and then another operation for biopsies and on we go until they are happy. The reason is that they need to look at the cellular level for the tests. The flexi can only give an overview of what is going on. So - whilst I wasn't happy that it will continue to be operations I am glad that they don't take any chances on this.

I was wondering whether there ought to be a customer rewards scheme for the Hospital - I go there often enough I could collect loads of points!

Anyway - all I need to know now is the ongoing treatment regime so I can understand that as the period between treatments slowly extends. The nightmare would be to get this to recur and have to start it off again! Let's not go there shall we :-0

Recovery from treatment 2

Well I certainly know I've had this treatment. It wasn't anywhere near as bad as I was expecting and was less than last week's in some ways. The treatment definitely worked though and there were some large bits of debris which were really the only eye watering moments. The catheter this time was OK - you'll never get used to it but it was much quicker and nowhere near as painful as last week.

I'm pretty sore around my middle - I would have said feeling like I had been "Kicked by a Mule" but I have no idea what that feels like so let's just say it feels as if someone has punched me just below the stomach and just above the Crown Jewels :-)

I intend to get a day of rest again. I could sit here and start to "do things" but I'd only put a strain on my middle and I don't want that. All I want is severe thumb strain from using the remote to dodge day-time TV - whoever invented that ought to be cathertherised and made to watch it with lots of fizzy drink!!

Anyway, only 1 more to go and then I can relax for 3 months. Then I have to have an operation. More of that next post!

Monday, February 04, 2008

Here we go then

Off now to turn off Phones and PC and then it will be a shower, loose clothes, get the MP3 player ready, the pills are there, the notebook and hold onto the rails and strap myself in for he free roller coaster ride!

Here we go treatment day 2

Well the Giants won but I really couldn't stay awake long enough to watch that.

Even now, despite getting off to bed early I still feel a bit tired this morning. As usual I feel OK if not a little tentative about going to get the treatment. As you may recall the 2nd one is often the one that gives me the most side effects and that in itself is the bit that is most difficult to explain to people in the suddenness and ferocity of them and also how quickly they go too.

And it is just like that - for a few hours afterwards everything is OK and it creeps up on you and all of a sudden it is as if you are aware that just about every bit of you is having some sort of trouble. It is that quick and I think that it normally comes on about 4 to 5 hours after treatment. It tends to last for a good 4 hours after that and then subsides. Overnight you know you've had the side effects as it is almost as if you are getting after-shocks from then to remind you as they finally subside into your memory as you subside into fitful but later deeper sleep.

Typically side-effects include being very sore, difficulty urinating (you need to go, you can go but it feels like glass or emery powder is included), aching legs, arms and lower body, sweats, generally hot sweats, occasionally cold ones too! Urgency, wanting to go every 5 or 10 minutes which is not the right thing to do you need to try and hold back if possible otherwise it just hurts more. Unable to get comfortable; this is caused by the aches and sweats and you just cannot get into a comfortable position. When you finally do get somewhere near bearable - you guessed it - you want to go to the loo again!

Anyway - we will see how I get on. I have most of my standard pills ready by my bed so I will make more use of these today if I need to.

Other than that today feels relatively normal although I need to remember to eat early and hopefully I wont get harried by phone calls which used to happen a lot - perhaps I shall just let them ring this time.

Superbowl Tiredness

Sorry - got to go to bed - too early and not even half way through the second quarter.

And yes - we do like the New England Patriots over here, or the Dolphins, or the Giants. The trouble is - it is on when it is live too late for us :-(

Come on Patriots!

Right - off to bed - treatment in 13 hours!

Sunday, February 03, 2008

Countdown

Just 24 hours or so until the next treatment and the countdown starts now really. A number of phone calls and e-mails arrive that wish me well for tomorrow. I am - or feel I am - recovered enough to go for treatment and so the worry I had about being too sore to go is no longer there.

I've a few e-mails to review and some paperwork. Tomorrow I intend to get 2 major postings completed and some more of my to do list completed. That will allow me to have a few days off recovering. This one, the second, is generally the worst of the lot although you may recall that the third one from the last series took that particular spot last time!

i shall be taking the rest of today off and just sitting down and getting myself ready for another hectic week ahead. I am gradually making inroads to my to-do list so who knows, perhaps next week will be the week I can see what the original colour my desktop was!

Saturday, February 02, 2008

Now I thoroughly enjoyed that

What a great evening. I met up with a nice group down from Scotland for the meeting and one of them handed me a Mark Token - a penny because we had never met. How nice was that? It is a specially struck coin that is handed out to candidates normally (in England) and so I have a lovely memento. I imagine it has similar uses in Scotland - someone I know has his penny always on him. I have a nice collection of these now and this one is very special because of the meaning behind the giving. A token - wondrful, charming and memorable.

The meal was great as it was part Scot and Part English - Scottish Beef for roast beef and a Haggis - piped in and addressed properly in the old tongue. Then slashed up ready to eat. It was fantastic and I have to admit (don't tell the wife) to having two extra portions! We had Neeps and Tatties and gravy (whisky) too.

So I had a great day out and it was a lovely meeting and a lovely meal Great company and a shame that I could only have a little to drink - they are off out drinking until the wee hours tonight.

Well - I am cheered up a lot by that and it is nice to get out - I do sometimes find that it takes me a while to get out of the house - but once I do I generally feel a lot better for it and for making the effort.

Where does the time go?

Getting ready to go out in a minute and that will be Saturday done for. I hope an interesting and enjoyable day as I won't be doing anything. That is the plan anyway. It is the first time that I have been to this particular Lodge and centre - it is a bit of a drive and a bit out of the way which is great.

Anyway, I'm looking forward to that but I didn't get half of what I wanted done this morning again although, having said that, I have managed to get rid of a stack of unwanted e-mails. I also have one of my old e-mail accounts closing down so I have taken the opportunity of removing it from my e-mail systems and hey presto - spam e-mails are down to perhaps 1 or 2 a day now. Excellent.

I am working my way through about 6 months of "to Do" lists and I should be able to return about half a Brazilian Rain Forrest into recycling by next week!

I'd better go and get myself ready now - Time flies.

Now I remember

Why I unsubscribed to a number of Fora (I suppose that is the plural of Forum) some years back. These are great places to find researchers or people who share similar interests to you. So genealogical fora are good places to find out about other research and get hints and tricks but, and here is the big but, there are so many posts that are not of any interest to anyone else but the person who posted and perhaps one or two other people around the world so you have to trawl through pages of stuff to find a snippet of good stuff.

It reminds me of a story someone told me about a Princess trying to find the right man to marry - "You have to kiss a hell of a lot of Frogs until you find the right one!" I like it - not kissing frogs you understand - the story!

I actually see that these fora are going to be good for me in the future if I pursue the genealogy business. Consider where else you could get captive audiences for your words of wisdom? Let's say there are 20,000 on a single forum, I only need 1% of them to remember my name and pass it on to a punter to start getting a "reputation" and building a network from there. So you have to be there but separating the wheat from the chaff is the difficult thing. Ho hum.

Friday, February 01, 2008

There may be trouble ahead

But while there's moonlight - oh go on - you get the picture.

I'm feeling - TGIF right now. What a week. I still haven't quite recovered from Monday's treatment - I hope that I don't end up going to get the next shot on Monday tingling like this or it will be "interesting".

As for the tribunal stuff - well, we will have to wait and see. Apparently there is no chance of arbitration and they are submitting their counter and so what will be will be (Thanks Doris).

I have an interesting weekend - I am out tomorrow for a Lodge meeting and I am looking forward to that immensely. I am also beginning to get on top of understanding what I want to do next or think that I am getting there. So the plans are crystallising in my mind about what I want to do, how I want to do that and I need to flesh that out some more. I have the training course next week which will help me get to that decision faster.

So I am going to have a bit of a relaxing weekend and try and forget all about the nonsense of this week and move on.

The Centre of Attention

No longer is everything revolving around me, I've got the clear diagnosis and only every now and again does it comeback and remind everyone - like now - under treatment with quarantined bathroom and me lying in a darkened room etc.

Normality is something we have always strived to maintain in the house and I think that we succeeded but things are back to normal now - it is just I haven't caught up with that yet!

I must try harder to tune in to what is going on outside of and around me, I have become very insular and very self critical and inward looking. I try to be normal here, at home, I struggle to do that elsewhere.

I feel a need to redefine myself, reinvent me and yet I cannot do that whilst I am still analyzing what has happened, what I feel like and what I want to do. Frankly, I'm not sure what I want to do.

Further thoughts

Is being given the all clear an anti climax? Do the things you've told yourself to help your recovery mean you will actually ever go out and do them? What is it all about?

Interesting isn't it? I'm readjusting to the fact that - in reality - life hasn't changed that much. I'm both stronger and weaker from the experience and that in both the mental and physical side of the meaning.

Let's take the physical side - I'm feeling a lot weaker in terms of strength - I don't know, let's say to put up a shelf or do something that is exerting. Also stamina - I can't do things for any prolonged amount of time. The only thing that I would say is that I do seem to be able to manage to walk for a long time or exercise - albeit I need to get back to some routine in that area after this batch of treatment. Where I feel I am stronger is my ability to take the treatment and ability to handle the hospital and things they do to me. I couldn't imagine them doing that before. So what is that? Physical pain is easier to handle than it used to be.

Mentally the roller coaster ride I go through most days is the obvious outcome. I go through huge mood swings daily. These used to be weekly if you look back across the blog you'll see the ups and downs. A lot is caused by FUD (Fear, Uncertainty, Doubt). These seem to be things that I was never fearful of before - work, what people think of me ,has my judgement really gone, do I mightily p*ss people off these days, paranoia, edginess, nervousness etc. They are little things that gnaw away endlessly undermining your self confidence - and that is the last thing I need eroded.

Before BC, these things were still around of course but afterwards they are magnified and are like huge barriers to get over and just when you get clear and are in an upbeat mood - along comes something else to send you back from whence you came. I'm not overly worried about these things, I know they are here and I have to deal with them. They arrive generally one at a time and you have to get over them one at a time. You can clear one only to have it get back into your head a few hours later. Such is the position I find myself in now that just when I get on top of something or try and finish something off - an event happens that tumbles me back down again. These are like ongoing disappointments, they are annoying and niggling but not like a wall of despair or anything like that - just like splinters really.

A lot of this still has to do with how shabbily the people I worked for treated - and continue to - treat me. Their posturing and white noise and general venom take their toll on me but I should know better. These aren't "reasonable" or "normal" people and yet as with all of "their sort" they are the "bully" and their tactics are those of under the surface terror. Sorry to sound dark about it but - real business people don't act like this. At the risk of sounding like "the victim" - it did get to the point of me asking myself whether I actually deserved this or not :-)

So, each day at the moment is a constant fight to keep on top of and above all this negativity and to try and get back the real me and whilst I know I can never be what I was before, I wouldn't mind getting back my drive and enthusiasm as well as my motivation and to kick this constant procrastination into touch. Oh yes and at least some of my phsical stamina as well please.

Deep and meaningful? Perhaps - I'm sure some reading this would advocate bringing back National Service - it never did them any harm :-)

Thursday, January 31, 2008

Setting goals and targets

That is my next task. I have some high level things I want to get done and I have a number of "to do" lists lying around and not everything is getting done. The trouble is that interrupts are coming in thick and fast and trying to keep all of the balls up in the air at once is proving a little difficult for me these days.

I'm just not getting on and doing things. I think that it is brought about by this lack of stamina and this inability to break away or to get clear of where I am.

I said that I thought that there is perhaps some anti climax in the way that when you are ill you use your imagination and your sights are set on things - "If I pull through this, I will sail around the world" or "I will climb a mountain" or whatever. The reality is that you are still you, changed a bit, with most of the stuffing and self confidence knocked out of you. You feel things that before you never did, you are over sensitive, over reactive, soft! You don't go and do those things - you get back to living your life and sometimes, that can be a let down (not in a depressing or phone the Samaritans way - so don't worry about that - in case you were - I know you lot!) :-) You know, job, money, house, kids etc.

You take a series of quite major blows to your physical and mental capabilities and you doubt yourself and your abilities. Many will say that isn't like me. I don't have the personality and the bravura that I used to have at all now, I am losing sleep over some idle threat about winning or losing my case. I know deep down inside that I have all of the documentation to fight this. Years ago I'd have loved the fight now I don't fancy it at all. It is actually stressful and it never used to be that. I'm certain that this is part of the healing process and that you don't regain equilibrium for a long time - perhaps years.

You can recover in some way to the physical stuff you go through the operations and the inserting things into your body but you don't seem to get over that they did it to you. It is as if someone got a large spoon and shoved it inside my body and just stirred everything up so that it no longer balances out.

I think I have probably said enough tonight but the holistic must be looked at sometime and perhaps I still treat it like any other illness still. How else can you treat it any other way? That's all you've known?

Thursday Evening

And still there is an urgency about needing to go to the toilet and whilst it isn't pain I'm feeling, it is certainly a tingling . I am SO glad that I didn't need a flexible cystoscopy tomorrow - I'm not sure that I could have managed that or if not me a certain part of my anatomy twice in one week. It sends a shudder down me just to think about it.

I hope that next week isn't as bad as this - I think that the catheter snagging on the way in is a bit to do with it this week. I hope that the lubricant does it stuff next week and hey guys, if you want to get the willies or make your eyes water - there is no local anaesthetic - just a very sharp intake of breath as it travels around the "S" bend and past the Prostate.

As I keep saying though, better this than the other outcomes and other people suffer far worse things than this, far worse so I shouldn't complain and I should be thankful that they are treating me with same stuff they cured me with!

Wednesday, January 30, 2008

Settling back down again

I find this whole thing far more traumatic than I ever used to before. It does mightily p*ss me off the way people behave these days. Far more these days than it ever did before. It is their bare faced lying and defiance of common law and the norms of society that I cannot get to grips with. What gives people "the right" to try and make money out of you and turn you over is just beyond me.

I'm just getting back down off of the ceiling and realising that these guys will need to produce documents to back the case that they are making. If I remember my case law they actually need to have something signed by me to state that I didn't want them to pay me - I must go and look that up now.

It just doesn't seem to go away.

That's better

A lot better. At last I've actually managed to get on and do some things this morning and get letters and files sorted and to begin to clear things. It isn't as fast as I want it to be but gradually I am coming free of the mud so to speak. I must remember that it is all small steps as I expect a lot of myself. Small steps, a bit at a time and I'll get there.

It is amazing how pleased you become with yourself once you get things done and achieve even small goals.

Off to tackle the next bits now.

By the time

I got to sleep it must have been 3 or later. I'm up this morning and feeling a lot better than yesterday and ready to tackle the ever growing list of things to be done.

I'm going to have to make a start at moving things around, by that I mean adjusting where things are in my office. The PCs, printers, scanner and files have been in the same place for 10 years and perhaps a change around will make it look and feel new. I also need to work out ways of being productive where the current setup of three PCs on an "L" shaped desk doesn't give me much room to manoeuvre.

So many things to do, so little energy to want to do them :-)

Wide awake

At 1 in the morning and it is probably down to the extra long lie in I had on Tuesday.

I'm still quite sore - it almost feels as if it were post operative than post BCG - such is the difficulty of urinating at the moment - it is a grab the washbasin and have a little scream ordeal. Whilst it is getting a little less painful - it brings back into sharp focus how good your brain is at forgetting the last time or the true amount of pain you were in. If you did remember, maybe you wouldn't do it.

I spent the afternoon just relaxing in my comfy chair and watching TV and doing some research into the new venture. I think that I have convinced myself that there is a market out there and there are a lot of amateurs (in the nicest meaning of that word) who are doing research as sideline or for pin money. Reviewing the state of many of their web sites, I wouldn't be tempted to even contact them - only for the usability and rather pompous terminology they use. So I think that there is a market there and I think I can improve on the amateur quality out there. The next bit is perhaps a bit more difficult as I try and work out what market share there is and what value to put on the work. Not easy as again the amateurs have set wholly unrealistic targets and the profession appears to be one that undervalues its worth.

Anyway, - 1 am and awake - I had better go and work out how to get to sleep as I need to be up and working tomorrow.

Tuesday, January 29, 2008

One down two to go hopefully not like that

Ouch, the catheter hurt or rather stung this time and it was a little eye watering to say the least - it leaves you slightly bent over and with quite a stinging feeling.

Apart from that it was much as usual, the routine kicked in and there was sufficient blood and bits to show that the treatment worked. I slept for 12 hours or so which was good and although I feel a bit slow and a bit aching and a little bit delicate - I'm OK. I am absolutely certain that the side effects are getting more noticeable the further down the treatment track I go. Perhaps that is why many give up later on. I can see that this isn't something you would want to continue to do as each one progressively beats you up. It actually feels a bit like that, parts are swollen and and it feels as if someone has punched you all around your lower body.

On the positive side, I am not working and so that isn't making me want to rush back or try and overdo things so I am, at last, taking things easy.

Monday, January 28, 2008

Preparations are over

now I am ready to get going to the Hospital. The good news about that is that it is very close by and so it doesn't mean that I am hanging around. They have to administer the BCG in a small window of time and so I am usually in and out quite quickly. Let's hope so.

a few final things to do before we are ready to go and that is just powering down phones and the like. I need to make sure that towels and things are in place so I am not searching for those on my return too.

It is a bit like baking a cake when we get back. My wife looks after the timer and calls up after 15 minutes so that I can turn to either my side or front or back (as needed) to let the BCG hit every part of the bladder.

I'm not as jittery as I was earlier.

TTFN

Next steps

I've got my appointment letter and my stress balls ready to go and my tablets are by my bed along with my MP3 player and notepad and pen. Now to go and sort out the bathroom which is off limits from 4 pm to 8 pm today to everyone but me! Luckily we have a downstairs toilet otherwise it would be a nightmare to have to keep things as clean as possible.

After 6 hours from instillation - I am apparently no longer liable to leave BCG lying around anywhere. The bleach and wipes and soap mean we must have the cleanest bathroom in the village come the end of a Monday session.

Just under 2 hours to go and I'm relatively calm about this. I can feel some flutters already as the time nears but - pottering around and organising everything "just so" will make the time fly and I can then get sorted ready to go.

Here we go

I have to have eaten and had my last drink by midday so that I can "last" 2 hours with the BCG inside me. So lunch will be around 11:40 or so. I then go and get myself ready - shower and get into some loose clothes - turn off the mobile phone - that won't be turned on until tomorrow.

I have my notebook ready to record all that goes on and I will then go and get other stuff ready including the bleach, cleaning stuff, old towels and so on. The timer in the Kitchen does for the 15 minutes a side turning regime and the telephone will be moved out of my room once I have completed my 2 hours wait and can go to sleep. One of the key things is to get plenty of bed rest with this and not to feel you need to start leaping around just because you seem to feel OK.

Two weeks today I'll be preparing for my last one. It must be psychosomatic as I can feel myself aching already :-)

Time to move on

I really did fancy lying in this morning but got up anyway and decided that somehow and someway I need to move on. Now that sounds a strange thing to say as, given any stretch of yours or my imagination, the past 15 months of this blog and 20 months of my life have HAD to see me moving on but what I mean is slightly different to that.

I've talked about the rut I'm in, the desire to change but the ordinary sensibilities and the situation you are in - think to yourself if you have wife, family, house, commitments etc quite what could you do to break out of that without there being some sort of impact to those around you and perhaps you'll see what the problem is?

The trouble is that there is a huge desire to do something different to go off and do something life changing or something selfish (perhaps) and a lot of this has to do with common perception (I'm sure) and this is that- if you've survived something like this then you go and climb a mountain or run a marathon or do some good works etc. in reality, of course, you just survive and carry on as normal.

I don't think that I really know what I want as my head and my heart cannot make up their own minds whether the life of a freelance researcher and writer would be what I want or whether to stay and earn some money doing what I have done for 30 years or quite what to do. I'm certainly not planning any mountain climbing or marathon running or anything quite so out of the box as that though.

Whatever - it isn't going to get done either way whilst I sit here stewing about it and I'm getting to the point of trying to work out whether future treatments would impinge on going abroad or even if I get the chance to go to Chicago. It hasn't happened yet and such things are distracting and getting in the way of moving on and making a decision possible.

So this morning, I made a decision to start to put things in order and to start to adjust the way I am tackling things. It isn't going to be easy to change it around as somehow what I despise most at the moment happens to be the habits and routines I am presently in and they need to change as things just don't get done. It may sound trivial but if you can imagine that some days I can sit in front of my PC and start a letter and end up some hours later still working on it, you may see what I mean. I may start to tackle some papers on my desk and end up sitting reading something I picked up rather than dumping it in the paper bank. I'm far too easily distracted and I'm not being efficient and sorting out the things I need to do. perhaps it is some self conscious thing, perhaps some wish not to want to move on.

At least this morning I have gotten three letters completed, and made a start. I doubt that I can continue at that pace for the rest of the morning as I'll be sorting out stuff for my treatment - but at least I'll have made a start.

Sunday, January 27, 2008

it's all a matter of routine and being prepared

Tomorrow will be a build up of a series of routines that I commenced when I first started having the treatments and the things I learnt about them. I will be sorting out my music, my Ibuprofen and Paracetamol tablets and getting my note book ready by my bedside. I write down the things that are going on in case I need the notes - or rather anyone else needs them - whilst it is pretty rare you can get anaphylactic shock although, I haven't so far I am very glad to say. Additionally, if I get violent side effects then at least there is a timetable of what has happened so far. If help were ever needed to be summoned there would be a blow by blow account of what I've done, drunk, swallowed, passed etc!

I tend to record all the gory details I'm afraid including what I observe falling out when urinating or as they call it "voiding". Whilst that doesn't sound a particularly pleasant thing to do, I have a system to do that without having to keep a constant eye on proceedings by voiding onto toilet tissue placed there for that purpose. Whether or not this is clinically useful - who knows but it helps to pass the time of day and certainly lets me know that the BCG is working :-)

In a way I'm now going into slightly unknown territory as the last three I had appeared to me to give me more violent reactions than any of the previous ones when I had Bladder Cancer. Of course it may also have been down to the fact that I was working like crazy at the time too. At least that worry is no longer with me and I can take time to recover properly on each treatment.

Hopefully I will sleep properly tonight - I want to be as relaxed as I can be tomorrow and a good night's sleep will certainly help to start that off properly.

So back to the routine, the preparation and ensuring that eventualities are covered.

Build up begins

No matter how many times you go through the treatments and how routine they become there is still the matter that you know they are coming and you know how you are going to feel (or think you do).

Tomorrow I have the first of 3 BCGs and, to tell the truth, I'm not looking forward to it but I know that it is because of that and the early surgeries that I am here to be in a position to not like them. This is the last three of six and I've had my nine week break in between.

I met a few people who were having their BCGs and they were a last resort and that if this treatment failed they were going to "lose their bladders". These days you don't have to have a bag (I learnt all this early on in my diagnosis and first recovery period). They can build a bladder from bits of intestines but for a man the operation is as serious as having a prostate removed as the results can be a loss of function. It was a big worry to them and I can understand that so I temper my feelings about the treatment with the knowledge that I am here and well because of the treatment. For some that isn't such a bad option - the reason? If you don't have a bladder, it is unlikely that you'l get bladder cancer again (if you think about it).

No doubt I'll get back to some of my habits and routines tomorrow. For today - I have a stack of work to do and not much time to do it. I will be distracting myself a bit as well as it doesn't help me to dwell on thinking about this stuff too much.

Saturday, January 26, 2008

Living with something dangerous

Not the wife! Worse than that :-)



No really, I'm still not sure that it ever sunk in how downright dangerous this all was or how close it all came to being a lot worse than it was. A few cells deeper and that was radical surgery time. A few cells further and that was curtains. Well perhaps not curtains straight away but I think if it had of spread we would be calling last orders within a year or two.



The truth is that I read all the statistics and stuff early on and it was so distressing that I decided that I wasn't going to be one of those statistics and the majority of people you meet online are in a far worse state than you are. It is hardly encouraging stuff but it is a very survivable cancer compared to some of the other ones. Being young probably helped me out as well.



Why think about this now? A friend looks as if he has a nasty one and it isn't going to be easy for him to cope with. He will have to go through a bit more uncomfortable times than I did. As it isn't the same I'm not sure that I can help much but I'm "living" proof that it can be a positive experience and with a good outcome too. Let's hope he takes that on-board.

That's much better

A good night's sleep and I'm back to my usual self. I need to make sure that I'm not doing that again in a hurry. I suppose that I should be considering getting my fitness levels back. I had no idea that I am still lacking stamina and fitness to such a level. But then again, I still don't know how ill I have been either!

I'm bit worried about it but not overly so, I just need to do something about it and build back gradually. It is just a surprise quite how much has changed in say - the last 2 years.

Friday, January 25, 2008

A Lot better now

Thank goodness for that - I felt so tired. I had another hour and went to the meeting which, fueled by Adrenaline, meant that I got through that and everything went fine.

I'm back home now and looking forward to going to sleep as soon as my daughter's friend have departed! A nice bunch of youngsters planning their holiday together at the end of their exams.

Well that is the committee meeting over and done with for another year.

Not as young as I used to be

All very well to be up in town and to go out to a number of nice and not so nice places but, oh dear - getting back in the early hours wasn't so good and getting up and getting going again - well - lets put it like this - I've been asleep for a couple of hours this afternoon already and I need to probably go again in a minute and get another hour if I can as I am due out tonight and I feel so tired.

It is just amazing how little stamina I have these days.

Thursday, January 24, 2008

Enough of the deep and meaningful

I'm going to head out a little early to London so I can have a long walk and see some of the sights and take it easy rather than rushing about to get to places.

I'll enjoy an evening of getting away from it and spending some time with some old friends and laughing about some of the things we got up to and some of the good guys and some of the idiots we encountered too. We have been involved in some "hairy" jobs and deadlines and had all sorts of adventures along the way. More surreal moments have come when during a meeting two of us delivered a calm review of progress that so upset the main contractor that he stormed out of the meeting! As he walked out (and it wasn't me) my mate said "Its a bit early to be leaving. The Pub isn't open and most of your drinking chums haven't arrived into work yet!" What the chap said is not printable on here :-)

On another occasion whilst trying to get the builder to give me a clue where he was going to set out the walls so that I could start to get the services installed, when he refused again, I asked him to build the building from the roof downwards and that way I could project a line down with a plumb rule. He was nodding agreement for at least a minute before it sunk in and no one else could hold a straight face either. I got my setting out points the next day. This was the same guy who called a huge meeting to answer a list of queries we had (although we didn't realise that was what it was for until we got there). On entering the meeting there must have been 15 senior people there - architects, surveyors, engineers, consultants etc. He told the meeting that he had called the meeting to answer our queries. My colleague and I looked at each other in amazement and produced a large letter we had got from the Main Contractor himself answering all of our queries. We produced the letter at the meeting and showed him - he denied he had written it - strange indeed. we had a lot of fun going through the answers and asking everyone if they were happy with the answers we had been given. Most of them agreed that these were the answers they had given to the main contractor! It was only him who didn't acknowledge his own letter to us.

Ah, good days - enough to write a book? Perhaps :-)

A reunion of sorts

Last October we met up and decided that we ought not to be rushing to get home late at night the next time we meet. We all used to work for the same business and where our office was (or maybe still is) they turned it into an Hotel which is pretty ironic as we used to treat it like one when we worked there!

so I will go back and visit a building I haven't stepped foot in since 1980 - wow. I hope my room isn't where my old office used to be :-)

It will be a very nostalgic evening. We had some great times and worked on some massive projects and have remained firm friends ever since.

I am really quite looking forward to seeing if we can remember let alone find some of our old haunts from years past.

It doesn't get more sad than this- trying to relive our youth - except in those days we could drink all night and get an hour or twos sleep and be back working next day. We will probably want to be back in the Hotel by midnight in case any of us change back into Pumpkins!

Wednesday, January 23, 2008

Kubler Ross revisited

Elizabeth Kubler Ross and the model for death and bereavement counselling, personal change and trauma.

I've made notes about this before and it is as if I have gone through this once again or actually never got up the final slope and fell back down again.

The stages are:


Denial - Denial is a conscious or unconscious refusal to accept facts, information, reality, etc., relating to the situation concerned. It's a defence mechanism and perfectly natural. Some people can become locked in this stage when dealing with a traumatic change that can be ignored. Death of course is not particularly easy to avoid or evade indefinitely.


Anger - Anger can manifest in different ways. People dealing with emotional upset can be angry with themselves, and/or with others, especially those close to them. Knowing this helps keep detached and non-judgemental when experiencing the anger of someone who is very upset.


Bargaining - Traditionally the bargaining stage for people facing death can involve attempting to bargain with whatever God the person believes in. People facing less serious trauma can bargain or seek to negotiate a compromise. For example "Can we still be friends?.." when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it's a matter of life or death.


Depression - Also referred to as preparatory grieving. In a way it's the dress rehearsal or the practice run for the 'aftermath' although this stage means different things depending on whom it involves. It's a sort of acceptance with emotional attachment. It's natural to feel sadness and regret, fear, uncertainty, etc. It shows that the person has at least begun to accept the reality.


Acceptance - Again this stage definitely varies according to the person's situation, although broadly it is an indication that there is some emotional detachment and objectivity. People dying can enter this stage a long time before the people they leave behind, who must necessarily pass through their own individual stages of dealing with the grief.

I see all of these in my writing.