The hardest thing for me to do

If you know me - you'd know that the hardest thing for me is the drop out of light speed I have experienced in the past few years.

I've been what some would call a 'high flyer' although I'm - in my estimation - a troubleshooter who just uses common sense to sort out problems. I've worked with some of the top 100 companies in the world, I've been right up there - full on - working my bum off and being rewarded accordingly.

What is so difficult about slowing down, going native, doing the 9 to 5 and just doing what you need to do all the time and just being like "everyone else"?

I can't see it :-) Everyone I know can see it and tell me to slow down, take it easy, relax, do what you need to do, do the minimum, you've earned your rest and all the other phrases.

I have to tell you there is nothing quite so difficult as jumping from Light Speed to Impulse Engines only! The sudden stop is totally disconcerting and the idea that at 51 I am scrapyard material is truly one of my concerns. To do a 9 to 5 is again quite alien. To have time for friends and family is also foreign territory. To be in the house in the evenings and not just at night is a bit of a novelty too.

I suppose it is like stopping work and going into Retirement. What am I going to do and how am I going to cope with the change?

Today - I did do just what I needed to do and felt that I had delivered a good day's work - for some time I have felt that I haven't done that.

I am sure that this is just another string of things I need to come to terms with. Gee - 51 years old and wondering where my Zimmer Frame is...

Still not right

But I am forcing myself to be. It is hard work being the office comedian but I keep getting moments of deafness and then clear and I still have tinnitus what a nightmare. This, of course, limits my ability to time jokes or think fast on my feet but we have had some laughs today which is encouraging.

Out tonight with my old school chums and looking forward to having a few beers.

So - work - well it is OK - I am at 75% pace at the moment and that is also OK. I have worked out to take my coat on and off on the train as it is so hot. It is like sitting in your front room with the fire on in all your outdoor gear. I really don't know how people manage it.

I am glad I gave up the Uni thing now though as the pressure is off and I can get my work done and not worry about running back here to do the next stuff. The reason is I am so tired - it really does take it out of - not surprisingly.

I hope to hear from the Hospital tomorrow about what they are going to do to me... I have also decided to take Friday off so that I can ease in rather than go crazy - I have a very busy day on Thursday too so don't fancy trying to drag myself up on Friday morning.

For one minute

I nearly came home this morning - they run the trains at steam bath temperature (it can't be good for you). I had coat off, tie off, buttons undone and thought - I can't go on like this. It was a real claustrophobia moment. However, some deep breathing some music and just rationalising my thinking made it OK. I really don't like trains and being packed in at this time of year. How on earth people get on the train with scarves and hats and overcoats buttoned p the whole journey I don't know.

Coming home was OK as I got a reasonable seat and was able to settle in a bit and also I was going home!

I suppose it was just a blip although sometimes I do feel strange on trains especially underground ones. Maybe I've had enough - I think you probably do - I've lived in and around London my whole life and it isn't really an "old person's city" not that I'm that old but I enjoyed it when I was young and now it doesn't hold the excitement it used to, I certainly cant play hard all week and I'm not certain I'd enjoy it.

See what tomorrow brings I think - I hope the rain stops - it is pretty heavy and persistent out there at the moment.

It saved the best until last

As I got out of the station it hammered down and has been all the way home - lots of little floods around - I imagine with the thaw that will just get worse! So I have arrived home wet through - not good. A quick change and hopefully none the worse.

Funny old day at work part good hearing part bad - managed the meeting and was OK with that - gave the boss an alternative way of employing me so hope that they can do that rather than me taking on a full time and ending up not working half the time :-) If you get three sickies in a row then you are on disciplinary as an employee (which I am not) so I explained that it would mean 1 lot of treatment and they'd have to do that! We agree to find an alternative to this as it isn't fair on either party.

Twas an OK day I think.

It looks as cold and miserable out there

As I feel this morning. I'm wearing my walking gear to work as it is raining and miserable outside.

It will be interesting to get to work and I suppose I'll have the inevitable stream of people coming up to see how I am. So just remember to tell them you are OK and they will go away - let's not bore them with the facts and how I actually feel.

On another matter, it is amazing how people can't get on with one another = I have a dispute between two grown men to try and "manage" - I think banging their heads together might be a way forward. The trouble is - whatever the history that has gone on - I am no party to it and so can't hope to work it out and help them arbitrate. The Reason? I don't have time or patience for that sort of thing anymore. The sort of stuff that is left in my armoury would be "Get a Life", "Aren't you two a bit old for that?" and that sort of gun ship diplomacy.

Right - the dark, cold and damp morning awaits my emergence back onto the real world.

Work - What's That?

It must be close to 6 weeks off work mustn't it? I can never remember being off that long even after the TURBT #1 which was pretty traumatic - I think I was working about 3 weeks after that for sure.

Well - I wonder if I will remember what to do? I don't actually fancy going back at all at the moment. I'm sort of nonplussed by it all and don't have the enthusiasm or energy. Maybe tomorrow I will get the buzz off of my people - they say they have missed me!

We will see I suppose.

One of the strange things about today has been that both girls have been out and so we had the house to ourselves which was quite nice. We went on our circular walk - it looks great in the snow and isn't too slush filled at the moment. Tomorrow could be different.

I;m still up quite late and need to just get my bag ready for tomorrow along with all my papers so that I can be ready to dash off in the morning.

Whew those boys can blow down a Storm

The Scots were on top form - as we left at about 1:30 in the morning the piper was doing his party piece of pretending to be drunk playing the pipes - or maybe he was? No actually he was really funny and a most impressive musician.

I had a GREAT day out. The full Burns Supper, We got in at 1 pm and was greeted with a large tumbler of Scotch - very nice. It was a double double by the looks of it. Then a couple more before the meeting that started at 3 pm. We didn't finish dining until 10:45 and then went on to a club and carried on to about 1:30 as I got home about 2.

I am feeling remarkable well considering the quantity of scotch, beer, wine, port and more scotch and beer I had. My ear is much better :-) perhaps I should have been doing the scotch, beer, scotch treatment all along? and I can hear small noises now like my Vitamin C tablet fizzing in the glass this morning (I'm taking 1000mg daily of these).

SO, apart from missing the Rugby yesterday the meeting and the company more than made up for a really enjoyable day.

I was picked up and dropped off in my friend's Land Rover which is a full off road LH drive vehicle so it was a very strange trip to and from the place sitting in what is normally the driver's side. It was excellent at tackling some of the slush filled lanes.

I feel very much uplifted by the experience and much better today than for some time.

I need to raise my game today

I am off out of here at 12:30 then heading off in this lovely weather (we had a fresh fall of snow last night) to the meeting. We are going early so we have plenty of time for the journey (it is cross country from us up some "interesting lanes") and so my host can set up as he is Secretary of the Lodge.

I just went to check my wallet and I don't have enough money in there!!! Interesting - I wonder if Mrs. F has borrowed some for herself or the girls there was plenty in there earlier in the week! I will have to see what is lying around the house.

I'm certainly not feeling my normal chirpy and chipper self this morning and I'm not sure why. I'm still not much improved - my ears are clicking and popping again in and out of deafness - my stomach feels somewhat strange and I feel weak but that is maybe just coming out of this period of illness.

I need to grab myself something to eat and then go and get ready - we will not eat until this evening and I can imagine I'll be having the stomach rumbles if I do not.

I have no doubt that I will have a good time but I also need to be a sociable animal too. I hope that the Scots will make it down to this meeting through the snow and ice. They "make the meeting" with their Kilts and different Masonic Regalia, and for the meal afterwards. It is going to be a great day but I just need to raise my game.

What's gnawing away in the background

You know what it is? The little voice in the back of my head - you know what it is saying?

It is saying "How come, the last three lots of biopsies were clear and yet this one isn't?"

"Are these atypical cells down to the treatment, to the way they did the biopsies (I still reckon the cleaning lady did them!) or are they the beginnings of a recurrence?"

That's the bottom line, that is why I'm a little bit more upset than I probably need to be is that there is the very minutest doubt in my mind that this might be the start of a come back for the Big C. Now before you all rush and tell me it isn't, because it actually isn't, there is no use telling me, you need to speak to the little voice at the back of my head because in the back of everyone's head resides the little voice called doubt, the pessimist, the nuisance maker, the naughty kid in the classroom and all those things rolled into one. A little Sniper, firing off and sowing little seeds of doubt into your sub conscious just when you are about to go to sleep or when you are at your most vulnerable. The little voice tells you - you are going to die or other such niceties :-)

Sometimes the little voice is right and that's why I don't block it out. Sometimes it says that things don't look right, that's too good to be true, it is completely politically incorrect (good for it) and it questions everything and ridicules and challenges most things that I do.

I try not to take too much notice apart from the occasions where it has actually saved me from doing something I may have regretted but at the moment it is quite insistent that why should these results be different from the previous ones unless someone knowing that there wasn't cancer present really went and had a good look.

Mild Atypia it may be but then they use the word Superficial Bladder Cancer and I can assure anyone reading this that it is hardly superficial if you've actually got/had it!!

I think I will have a chat with my Urology Nurse when I next see her or I can e-mail and get an appointment if I am that worried about it. Normally my Urology Nurse will have the answer and she is discussing my case with the Consultant on Monday.

An afternoon full of popping ears

Every few minutes at the moment it is very strange all the pops and gurgling going on inside my head. Crazy times. I hope it settles down. Been in touch with work today and it looks as if my feet will not touch the ground next week there is so much to do.

Must be "something" about my shower

A couple of days ago my ear went deaf in the shower and today it popped back to almost, but not quite, normal. I suppose it is as you move your head around or stretch your head back it loosens up the tubes or something (obviously a technical term) and whilst I still have a bit of tinnitus it is much further away in the background. It is surprising how quickly you grow used to the noise in your ears, it was just downright annoying to start with now I can block most of it out.

I hope that it continues so that I am a bit more "with it" than I have been. I've been terribly slow - things have taken an age to get done and my brain isn't as quick as it used to be and I guess all the usual symptoms you get when trying to work when you have a cold or are ill.

So, the weekend beckons and work next week - that will be a shock to the system as I haven't been since the middle of December. People will wonder who I am.

I am looking forward to tomorrow with a Burns night supper and real Haggis and Highland Beef, a Piper and all the bits. It was great last year excepting that I had to drive myself and so was unable to join in the revelry. This year, I have a lift there and back and so I will be able to enjoy a few drams. It will be a long day - we are leaving here at 12:30 and probably wont be back until the wee hours of the morning.

So, things looking a bit better this morning and I hope that it will continue.

Getting back to work

I have made a commitment to go in on Monday as I have an important meeting that day and later in the week and need to prepare for them.

I actually feel a lot worse tonight than I have for a little while and young A has had to go to the GPs today for a very bad ear ache and is on the same sort of antibiotics I was on. I can only assume it is the same thing. The Doctor spoke to my wife and reckoned if I am not hearing properly in a couple of weeks time to come back and see him. Perhaps I have done some long term damage to my ear - although I have had almost full hearing back with it a couple of times it just keeps clicking in and out.

I hope that this clears up in time to go back though as it is just dragging on and on.

Keep taking the tablets :-)

Might be something else happening now then

I got a letter confirming my mild atypia today - I believe that means the same thing as atypical cells :-)

As it was the first post we have had for 4 days I checked with the Hospital to make sure I wasn't due in on Monday. apparently not. They have been checking to see whether I had undertaken a full one-years worth of maintenance - which I have of course. Based on that, they will be making up their minds what to do with me on Monday.

It is therefore possible that the treatment plan will change given that it is to really rid me of the atypia. I now have to wait and see what they plan to do with me. from what I gathered last time it isn't the maintenance I had before which was 3 BCGs one a week , wait 9 weeks, 3 more one a week, wait 12 weeks, rigid cystoscopy, results back in 2 weeks and next course sorted from there. It sounded like (poor deaf person I am at the moment) that it would be 3 BCG at 3 monthly intervals with a rigid scope at 6 and 12 months.

Whatever it is, it means I don't have to worry about being off work next week on Monday and Tuesday. The week following is a different thing of course.

I don't think it is anything to concern myself about other than what regime I get put on and that it "does what it says on the tin" and gets me completely clean and clear. Whilst this doesn't sound like a big deal having mild atypia, it IS a big deal to me and it needs to get sorted. Hard to bring my mind around to the positives when I know I have to go through some more pretty serious treatments before we can be happy that it isn't the beginning of a recurrence.

Indeed, the fear is that this mild atypia is indeed the commencement of a recurrence although no one has said that or even intimated that to me. It sounds like a normal thing. Let's hope so.

How are you getting on now?

Met a lot of friends last night and each ask how I'm getting along and I noticed that the ones that "would" be interested I could tell them a bit more about what was going on and the other ones I could just tell them that things were OK, I was cancer free and that they were keeping me on medication and observation (that's almost true and enough information to be getting on with).

Steve Kelley puts a very good point here that there tends to be two reactions to people who have cancer and - uncomfortable as this is - they are:

1) You are going to die. Just a matter of how soon and how awful the process.OR
2) It's been removed and won't come back and really the whole thing is over and can be forgotten about.

These would be reactions from people who have never had cancer or don't understand some of the ongoing issues with it.

It is a sort of binary thing, you're ill or you're not. Of course, if this blog and Steve's blog say nothing else it is that the disease itself has far reaching affects on your life and with Bladder Cancer, which is treatable it can come back, it is like that and the biggest threat we live with is every time we go to have an operation or get checked is the worry that it is back. Again, you can treat that, although the thought of having a neobladder or a bag to go pee in for the rest of my life isn't high up on my list of things to do before I die.

It isn't, cut, cut, snip, snip all over and done with, it isn't a cold and that was what amused me last night. Very few people are as clued up about cancer as those who actually have it. I was surprised to find people who have it, although I don't talk to many of them, don't really have a clue about their Bladder Cancer, a lot of people take it all in their stride and get told that they are having this or that and go off and have the treatment and yet probably haven't read up about how it works, what it does, ways to alleviate side effects and so on. I wanted to know everything about it.

So back to the point - 90% of the people at the meeting last night only really wanted to hear that I was OK, over the worst, on the mend, doing well. 10% were interested in the ongoing but, frankly, there aren't many who would be interested in the detail - who would?

If I was to be really cruel - I can recount the stories of the Flexi or the BCG treatments - only a very few of my friends know about the grizzly bits. But it is fun occasionally to drop in a bit about having the BCG and how they instill it with a catheter with no local anaesthetic. You can see the guys curling up, going to grab their groins and going "urggghh" and pulling faces. I do stop it there though as if I were there I couldn't listen to what was going on. Amazing what you put up with and amazing what people don't know.

I shouldn't be fed up

The last post says it all some poor kid under 30 is in deep problems with cancer and there is me whinging on about my hearing and how I'm not at work and how rubbish I feel. I always did say I felt a bit of a fraud just having Bladder Cancer. I still feel that a bit - maybe it is the strange way that I deal with it? How did all those poor kids go "over the top" in WW1? they must have known what was out there but they still did it. Again, that's a strange way of dealing with it too.

Not sure that is relevant but it came into my head after watching "My Son Jack" on DVD - one I got for Christmas. Lots of people worse off than me but I still complain and as a few blogs before this probably note - it is after all - all about ME and perhaps I ought to realise that.

I was out tonight and again, was pretty deaf and it showed and I was really struggling to get things sorted out and then I got a lift near to my house and the walk across the main road and the snow was a whole new adventure! I think that whilst I feel guilty not to go into work, frankly I'd be surprised if I can actually get more than a few hundred yards without losing my footing or losing my balance due to my ears and the affect this is having on me.

Part of me says go to work and the other part is saying - are you an idiot? - How well do you think you actually are and what on earth are you going to achieve by doing this? I'm sorely tempted to go in on Friday if things are OK just to say hello. I may even just go in for a few hours if I can, show my ugly face and retreat. Frankly it is absolutely treacherous outside and they don't pay me enough and it isn't important enough. The snow will have to have gone significantly before I even venture out that far.

I fully intend to go to work next week - treatment - if we ever get any post and it is planned for me - permitting.

Anyway, I don't know, I'm just p1ssed off and annoyed and find this whole "being ill" stuff very difficult to deal with. I've said before that up until 30 months ago - I hadn't really been ill for 30 years and so coping with being ill, having a condition that could have (and still might) end up killing me are all new things to experience alongside, long periods of illness and all the other associated cr@p.

Saw this which amused me

Apparently this is a real photo:

These workmen are installing bollards to stop nurses from parking on the pavement outside the Royal Hospital in Belfast. They are cleaning up at the end of the day. How long do you think it will be before they realise that they can't go home?

My Topsy Turvy World

Had a shower this morning and POP - deaf in my left ear. Not water in there - I'm very careful about that. So I'm back to being partially deaf again this morning, there isn't any pressure on the ear and it is crackling and popping away in there :-) it just means that I'm still not fixed yet.

On a sad note I see that a young "celebrity" here in the UK has got major problems now with her cancer and it has spread and has been described as "Aggressive" which I imagine is another one of those words you really don't want to hear when you have cancer. Like "Riddled", "Inoperable" and so on. In a way, whilst it is a tragedy for her and her children and she is only in her late 20s, it is a wake up call for me. My goodness, how would I cope with any of that, I'm really lucky in that it is under control and that brought my upcoming treatment into some sharp focus. What this next lot of treatment does is very much a belt and braces approach to the situation. It takes the approach that whilst we all probably have atypical cells, the ones they found in me ought to be treated as potentially nasty and so lets Zap them anyway.

Topsy Turvy world? Choppy Waters and back on the Roller Coaster - it will be OK in a few weeks when I get the timings of my treatments, get back into the flow of that, sort out my exercise and eating regimes and get fit again and begin to feel well and good about myself. This last month's turn of events has really laid me low and whilst I sound fed up and annoyed I'm still optimistic and looking forward - I know it will all change and sometimes, with something like this it can be in a few hours and the colds gone, your hearing is back and you feel good again. It just seems to be taking a long time to come along.

Medium Depressed

I'm in a sort of no mans land at the moment. I haven't quite fully recovered from this illness, the hospitalisation (I swear I still feel tender in and around my bladder area) and the sluggishness that being stuck inside brings.

It isn't massively depressing and it isn't upsetting as such. It is draining and dragging. I've rapidly moved on from having stopped my University course and had some good comments back on part of my last assignment but also (and I must have been ill) I missed a part of the second question out - which is so unlike me. It was good that I left that and walked away when I did. It was weighing down on me.

Health really is my biggest concern at the moment. Just getting back to being fit again would be good and I need to plan out quite how I want to do that. Like many I hate exercise - it is repetitive and boring and just feels utterly pointless. I'd far rather do long walks and be doing something to get fit but you cannot structure those too easily where I can with my cross trainer. It is far easier to get in the habit of not doing exercise than doing it. I learnt that I shouldn't be doing exercises first thing in the morning and that ideally I should have some food inside me and so this really means I need to consider doing exercises in the evening when - of course - I get in from work after 12 hours out of the house. You can see the problem here. When I was exercising before I worked from home and was able to do 30 or 40 minutes a day every day. Well, if I am serious about getting fit then I need to schedule it and I need to ensure I do it. I remember to take my tablets, my pre and probiotics and my Vitamin C all the time now and so to stick in 30 or 40 minutes of exercise must be possible? To stick to it might not be. Of course then there is cooling down and having a shower as well so I need to put aside an hour at least and perhaps 3 to 4 times a week would be reasonable.

I used to do a lot of cycling but again, I haven't gotten around to that in a while and walking is OK but you really need to do a good distance and the light and weather are against me. It is nice for walks here but country walks in the fields and lanes where there is little light at all at this time of year.

Diet also needs to be looked at a bit more seriously too as I tend to eat well at home but with meetings out I do tend to have quite a bit of food like three or four course lunches, wine and beer, port and a cheese board - a bit like this week coming! A big meal tomorrow and another on Saturday.

I'm certain that I'll need to get onto the heath kick again if I am to drop my blood pressure and lose some weight but more importantly just to get my fitness levels up.

Glad that

I didn't go into work today it looked horrendous, people falling down as the roads and pavements weren't gritted - ludicrous and the hospitals now stretched because of all these falls! With the slight balance problem I have it would have been murder getting to the station as there are two bits of the path and pavement that are steep and I can guarantee they would be like sheets of ice (doh!) well they would be of course.

Despite getting cold and that the trains aren't working properly and with everything else I'm sort of glad, in a way, that I still have problems with my ears and still slightly blocked up.

I do hope to get out of the house tomorrow afternoon and evening if I possibly can as there is a Lodge meeting and I'd like to attend that and do "my bit" in that. At least it will get me out of the house and talking to some adult company rather than being stuck in here.

I am going to a Lodge meeting on Saturday where we will have a Burns Supper and I am really looking forward to going to that again. I went last year but was unable to drink as I had the Cat with me. This year I am being driven there and back which is great. They have Haggis, Neaps and Tatties and Gravy (whisky) the ode to the Haggis is done by some Scottish Masons who come down especially for the weekend. After we have had the meal we go off to another location and have what they call a Harmony which consists of singing and tales and jokes mixed with some more drinks of course - it is a lovely meeting.

It still is all about me then?

Anne posed a question or perhaps provided a thought that's pretty important to realise. Here is the quote:

"It may help to realise that the desires of those around you are less about you and more about themselves - their fears and what the 'new you' means for them. In reality all you can do is be courageously yourself and invite them to address their own issues with that. They have their own journey to the acceptance you have found and it's not your job to make that journey for them."

Those who read this blog and actually know me, may well see what problem I'd have with this straight off. That is that by my actions I've set off something that I didn't want and that I have no control or influence over. Those around me having to deal with something that I have makes me feel guilty that it has happened and that their lives are affected. It's OK to mess me around but not those who I know and love - that isn't fair is it? Mind you what is fair? Cancer isn't fair anyway and just look at this - it affects loads of people even if they haven't got it! Nasty pernicious disease.

Balance that with, I had no control over getting Cancer (and we can argue whether it was self inflicted at another time) and the quandary becomes clearer:

In my way of thinking - I have affected the lives of those around me. They have to live with that and the consequences of something that I have caused. In my normal day to day life I would be mortified if through my actions I did something, anything that would detrimentally affects others. I feel somehow responsible.

Anne's point is that actually, I can't do an awful lot about that, it is what it is and whilst I can empathise and do whatever I can I can't experience their journey for them, feel what they feel about it (if they feel anything at all about it that is) and do much about it at all.

If I accept that, then it tends to ease some of the pressure I put on myself and explain some of the concerns I've expressed in my blog. I think it also reinforces the feeling I've had for sometime that whatever is going to happen will and there isn't a great deal I can realistically do about that.

In a number of posts going right back to 2006 I've often said that I thought it was all about me, that it is a selfish thing, that only I have to go through the treatment, only I have the mental anguish, only I am sick etc. Then I counteract that with concerns for all the people that are affected by my illness and so the fight goes on in my head about this. Is it me, is it the family, is it my parents and relatives, work colleagues, friends and so on.

You can't help what has happened to you, if it had been the other way around and it had been someone I know, then what would I have felt like? I have a number of friends in the same boat as I am and whilst we all speak the same language and outwardly project the same sorts of issues with our disease, I don't have a relationship issue with them in the way that I think I would with someone in my family getting it.

I think though that Anne is indeed right about one thing. If I hadn't actually had cancer then I probably wouldn't see what all the fuss was about and I'd be getting on doing my own thing as apart from sympathy and empathy, what else could I actually do? I'd know about the treatments and the operations but not have to live through them and so they would be out of my experience and in some way distant from me, it would be a wholly different thing to live through.

It's all about me still but it is less about trying to solve everyone else's problems. I cannot do that - neither can I change their thoughts, their feelings or anything else.

Well it has given me an interesting way of looking at things and I think I have to agree with Anne's statement. Whether I like it or not, it's probably exactly what IS going on and everyone else happily gets on and does their own thing here anyway.