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.