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!

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!

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.

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 :-)

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!

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.

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.

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.