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.

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.

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.

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.

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!

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.

The Black Dog

Hasn't been around for a while. The last couple of months haven't been crushingly depressing or emotional to the point of breaking down. It has been very different in terms of how I was affected and what it did to me.

This past few months has been annoying and time wasting where the black dog's visits are disturbing and troubling thoughts and visions and much deeper inside your head than the troubles of the world or actions of a few idiots.

The black dog will make you cry when you weren't expecting it and deliver an unexpected and sad thought into your mind. It will whisper about your disease and make things up; it will torment you and back you into a corner and it gets right at your most intimate fears and twists the knife and doesn't let you go until it wants to. Then it is gone; gone completely until the next time it appears to do its damage to your self confidence and to your dreams.

Until today - I hadn't considered quite how different these were, I thought that the emotions were very similar and yet they aren't at all. I'm sure that the recent ones will go away and I'll be able to laugh about them quite soon. My mate the black dog isn't something you can laugh about or brush off so easily. The black dog is your most pessimistic self somehow magnified several hundred times to bring every fear to its worst possible conclusion. Anyway, he hasn't been around for a while so lets hope he stays away somewhere - or has got hit by a car! :-)

Impacts to health and well-being caused through work

Reflecting on the past 2 months - for it has been that long since the problem came to light, I can see that the impacts on me have been profound. I had been happily working away and doing what I needed to and all was fine until the business (not me) had problems. Since that point in time, I've been angry, very angry, furious, upset and generally pretty damned annoyed with the way that I have been treated.

So what has this done?

Stress - I can actually feel the stress level coming down and my chest isn't as tight as it was
Anger - back under control - I've not been bashing around the house letting off steam or anything - just angry with the situation and thank goodness for this and the other blog as I have been able to rant and let off steam there
Head-games - Loss of sleep, brain whirring and planning and working out all the moves and all the options - it has been a nightmare and how much sleep have I lost as a result?
Physically - I don't think that I have suffered that much apart from the lack of sleep and how slow that makes you. I think that I could now do with getting sorted a bit better physically. I plan to get myself sorted out following the BCGs starting next week.
Overall - tired, irritable and not great fun to be with these past two months and a general depression and malaise were part of the problem too.
Not like I used to be - I'm definitely not like I used to be - in the old days I would have gotten this sorted out quicker and I'd have been far more aggressive. These people had been dealing with me for 6 months or so - all sweetness and light up until the point that things went bad and I was a bit slow in dealing a blow to them immediately. By holding back (as they requested) I've lost about a month in getting things resolved. That for sure is down to me not wanting a harder life and losing a bit of my edge.

The thing is that today I have come out of the shadow I was in a bit and I'm now at the point where I've done everything that I need to sort things out at a business level and I only need to make a few more decisions on that. Everything is in place now. I can go for the throat and bring it all to a head or I can throw it all in the bin and walk away.

Having got to that position - I feel better about myself and in control of the situation again. Whilst I am still thinking about it and contemplating my options - I get the feeling that this now isn't the only thing on my agenda anymore - I have other things to do and I can now get on with those without brooding over this day after day and (frankly) getting nowhere with it.

Impacts? - yes, affecting my health? - yes certain that it has - if not my health then my recovery. at least I am getting out of the rut and getting on and doing other things. Affecting my brain? of course it has, deeply I think, I now no longer care for the industry I have been in for some years, it used to be populated by honourable and decent people - I'm sure there are some still out there but this experience has poisoned that. I thought I wanted to do something should I recover that was different and enjoyable and above all, something I wanted to do on my terms. I have a number of years to go on treatment still and I need a flexible job, I don't really want any stress or having to keep chasing up my money and I don't need (if not me then my family) the instability of these ventures that you work for months at a time only to find they wont pay you.

I finally get to see the light at the end of the tunnel and it isn't the light of an oncoming train! So begins the repair and rebuild phase and I must ensure that I put myself and my health and stability first and build on that.

Solicitors' papers and forms arrive

That is quick. I now have the pack for the next lot of actions. I am waiting to hear what, if any, actions the business are taking now - they have gone very quiet and as I'm almost certain that they have removed me from the mailing lists although not terminated my contract it is all a bit strange at the moment.

I'm going to review the procedures and decide whether to go and pursue them for the money owing. The trouble is, of course, you can spend more time and money than you are actually owed and if they decide to liquidate the business then only a small percentage of the money will be available.

I see that one of the major causes of disease is stress from business HERE. It is surprising - quite why there are so many dishonest and untrustworthy people around. Perhaps it is because they are all selfish b*stards? It is also highly probable that they are allowed to work like this and it is tolerated. I imagine that they would be up in arms about it if it were them.

I'm not feeling as bad about this as I was earlier - now the paper work is here, it is just a matter of deciding whether or not to go down this route. That is strange, I was quite choked about it earlier and now, I feel that it no longer holds the "fear" it did before. I don't feel at all emotionally filled up about it which is good I think. I'm also pretty certain that if these guys defended anything that they would actually just dig themselves a bigger hole. They have a few more weeks to defend the first action I have taken. Perhaps by then their true colours will be found.

So I wondered what impact this has had on my health and I think it has had a significant impact on my well being. I'll explore that in the next blog.

A good evening out again

It is amazing just how an evening out that you enjoyed buoys you up for the next day. I'm up early and I'm feeling good. I was in great company and we had a thoroughly enjoyable time and got back home at a decent hour too.

So I reckon based on that I need to not watch TV or work late at night on the computer and perhaps I can get to sleep quicker and be more ready for the day afterwards.

Now to see how that translates for the rest of the day.

It is beginning to come back

I can feel that I am slowly turning the corner now. I'm still mightily angry about the treatment I received at the hands of the imbeciles last year and I am still not sure that everyone quite gets how badly treated I was and some people close to me are also annoying the hell out of me with their rather monotonous replaying of their point of view of the situation.

Of course they haven't got the disappointment of being shot as the messenger and a loss of most of last year's time and money to contend with I suppose. They are stretching the limits of my patience and I allow them the latitude of a rather spoilt child at the moment because they are friends. I hope the novelty of pointing out my "short comings" wears off soon or there will be more collateral damage to deal with.

The irritant factor then is still there and the anger is more controlled now and more focused. The want to get it out of the way is huge. I know it is holding me back and that is so annoying as well If only I could get it behind me. When I do manage to do this - I get things done, I move on and I feel better.

Having said that, I am feeling a little lighter and getting a few more things done and beginning to be less lethargic. Today I can feel that things are just beginning to move quicker, that I am getting on with my work and beginning to tackle the list of things that I have set myself to do.

I want things to be like a light switch - on or off and I should have learnt by now that it just doesn't happen like that. Last year I tried too hard to change things and get a quick payback. Of course change tends to happen gradually and I can't expect to be depressed one day and next day Mr. Successful and Mr. Cheerful and Happy! It would be nice for that to have happened of course but it isn't and it is still going to be the same tomorrow and perhaps it may just fade away over a period of time?

Someone said that hard work and taking your mind of it works - well actually it doesn't seem to. I can imagine that the distraction does a certain amount to take your mind off it but you do have to get past the initial hurdle in the first place. Just how do you get started or psyche yourself up for another go. There are only so many times you can dust yourself off, pick yourself up and get going again. I'm no quitter but it does seem to be that there is a build up of past disappointments and events that sit you at the bottom of your rut and each time you get up knock you straight back down there again. I feel like I am in a Hamster Wheel - I'm running like fury and not really getting anywhere fast at the moment. I don't feel like sticking a stick into the wheel either quite yet :-)

Anyway, getting there slowly and far too slowly for my liking. I suppose it is an inertia thing, once you get going you can build up some speed and then it gets easier. The difficult bit is getting going and not having traction control to assist me!