Reflecting on being clear again

Each time I get a clear it means that I am:

• Less likely to get a recurrence
• More likely to continue to be clear
• Moving further away from the horrible stuff that happened to me
• Gradually getting my strength back and repairing my body
• Able to plan a bit further in to the future
• Less plagued by dark thoughts and self doubt
• Building some optimism for the future

I'm still getting to grips with:

• Being quite fragile when it comes to emotional stuff on films and TV
• Getting or feeling angry at people who are self centred and selfish
• What on earth I want to do with what bit of my life remains both professionally and personally
• How I feel about myself

It was interesting to see "how I feel about myself" being on the list because I recognise that I don't feel particularly good about myself at the moment - it is one of those things that you deal with a lot with staff and you need to be sure that they feel good about themselves but also that they feel good about their colleagues or you can get problems.

My low self esteem is really about not having worked in a "real" job for the past two and a half years. I've been 18 months in this job and was messing around for about a year with the lame brained one. It just doesn't feel that I have done much whilst I have been ill and not really been anything other than looking after my own sorry arse. The family are provided for which is a blessing, at least I got that right and had insurance in place for a living death.

I'm just not terribly satisfied with my current life, my current job and many other aspects of my life. I think that it is all part of a major reevaluation you go through when you have a chronic illness. Some probably come to terms with it really quickly or pragmatically argue that it is just something to deal with, get over it and move on. In my mind it is far from that. What sticks in my mind are the regrets and the decisions I took when I was younger that "may" have contributed to where I am now. Like working quite so hard, smoking all those years ago and that sort of stuff. I used to work really hard and drive myself to do a great job. Did it actually achieve anything? Am I reaping the excesses of my youth?

It is a strange dilemma. Someone hands your life back to you after you had been threatened with the alternatives. You get it back, not in quite the same shape your remember it and suddenly you have to decide whether to keep on with the same old same old which you were leading up until the time of diagnosis or go and do something different.

The older you get the more ties hold you in one place. Friends, clubs and organisations, work children, school, their friends and so on all tie you down. I'd be tempted to move further out into the country or to the coast or abroad but that probably isn't going to happen. There is an underlying need to make the most of this "opportunity" but as already discussed on this blog site, there is the fact that the only person likely to feel that way is me, no one else lived through this and what it did to me. Their experiences are likely to be very different and apart from some changes that they have noticed (I'm much more laid back than I used to be) they probably wont understand the desire to make some sort of change. I just wish I knew quite what that change actually was or is!

Stupid Cold

What a nuisance - I've got a streaming cold, a real classic, nose running, sore throat, headache, watering eyes, sneezes that knock your block off and coughs that rattle your ribs.

Bugger it, I really didn't need this and I'm off work - well no one would thank me for catching this. I am trying to do some work at my desk but with little effect really.

I am drugging myself up as I have a meeting I should be in tomorrow. The trouble is, if I am anything like this I will just have to miss it as I don't want to stick them in a meeting room with me coughing and sneezing all over them.

So it has sort of put the kibosh on doing anything for a day or so as I do feel pretty rough at the moment.

Great a cold

Here it comes sneezing and coughing, sore throat and nose. Bloody ill people why can't they keep their colds to themselves :-)

That's the trouble going into hospital - it's full of sick people. If they put ordinary fit people in there it would be better.

I really could do without this right now though. I've got to make a decision whether I go to work tomorrow if I'm like this as I'll give it to everyone else and wont be popular at all.

Bloody typical, I'm not amused - as you can tell.

A new day has dawned

The early up for the Japanese Grand Prix meant a 5:45 start but it was an interesting race but I have to say I wasn't feeling great and Mrs F. and I both have that stinging at the back of the nose and throat that preempts a cold. We think perhaps sitting around in a Hospital waiting room for close to an hour didn't particularly help. So I'll keep an eye on it as it hasn't gotten any worse this morning so far.

I am still pretty neutral over yesterday's result which surprises me still, I thought maybe I'd lighten up overnight or realise how good it is or something like that but - obviously not :-)

I've all day to get myself excited I suppose! Actually I have a load of things to do like stuffing envelopes and sticking stamps on - whoopee! At least I wont have to do it for too long as good old (some say) Flocky Bicep will be take over from me this time next year and have a go at this - it will be a reward for some of his more risque comments :-)

So back to how do I feel and what do I want to do? I really just don't know - I'm just not reacting to it at all neither positive nor negative and somehow that in itself is OK and yet I am surprised by how calm I am. Oh well, I have all day to think about it.

Officially - I'm a Low Reactor

There was no huge smile, no whooping, no celebrations of any kind today. It may sound strange if you haven't had Cancer to think that you would react in a low key way to what is, after all, pretty good news.

Clear of Cancer. I remember the first time I heard that being very emotional and quite shaky but that was tempered with the need for BCG follow up and maintenance.

In a way if I'd heard the word Remission or something similar then that may have caused a bit more of a celebration. To have to go through an operation once again next year is a bit of a blow but I'd rather do that and be sure than to have the half chance that something worse may have happened.

But don't get me wrong about what a major step this is, it is just that I'm not having a party to celebrate or any such thing. The threat of BC coming back is still very real and so a muted response is called for at the moment.

I was interested to hear from my friend last night though that he thought that this year I have started to look well, the strain is off of my face and the colour has returned. Many people have said I looked drawn and some said I look positively ill and grey when I got this and the few months afterwards.

I thought it was a surprising reaction of mine today I was all ready to party and do some deep thinking after this particular result. I think today I am feeling relief and maybe tomorrow I will be feeling a little more upbeat about things.

All Clear

Well it wasn't quite how I dreamt it but it was all clear nonetheless. It was strange because Mrs. F. Wanted to come along for the walk and normally I go on my own. It was suitably blowy and autumnal and there was a 45 minute wait to be seen as my Consultant had been double booked and was apologetic about that.

So all was clear and she remarked that it had been for some time. She wanted a 6 month appointment and toyed with the idea of a 6 month flexi or perhaps even a year but she felt that we should do 6 months, have full biopsies her "Gold Standard" and so a further rigid cystoscopy. They aren't fun but if that is what it has to be, that is what it has to be. Fed up with these? Sure but then it goes with the territory so I have to accept it.

We walked home and I had one beer as Mrs F was with me! I feel tired at the moment, I'm sure I have been in a high state of anxious anticipation and am falling asleep here typing this. I think I will wander downstairs and fall asleep there :-)

Let he who is without cast the first stone etc

It must be me or the new me but why is every one these days straight in with both feet? I just read a post on a web forum (a Masonic one) where an innocuous post about a subject many would find interesting was tirade on by some self styled "politically correct cybersleuth". Frankly the guy should get back to the bathroom and work on his wrist technique!

You can't say anything without some smart arse coming up with some old twaddle about you shouldn't say this or do that. Heaven alone knows what makes these misinformed, misguided half wits mine, or anyone else, judges.

If I learnt just one thing in the recent past it was that life's short enough as it is without all this holier than thou cyber bullying. What I do enjoy is facing these do gooders down face-to-face as they wear a very thin veneer of respectability and are generally extremely sad and worthless people. I suppose somewhere there is a place that they fit into society but I find it extremely difficult to know exactly where that is. Even slime is life.

What brought that about? Just the constant attitude that anything exists to be pulled down and humiliated - it is a pretty sad fact of life that TV promulgates this behaviour and that people who should know better decide to copy it and think it is right.

Well I won the loudest shirt contest

It was Jeans for Genes day today at work, pay a couple of pounds to dress down. It was a bit of a shock to most - I have a hawaiian shirt that can actually melt your eyes so fierce are the bright blues, oranges and yellows. It beggars belief and there were double takes a plenty. I bet with my colleague that I would have the loudest shirt and he turned up in a normal Tee shirt!

Anyway, it was so bad that I daren't take my jacket off on the train in either direction :-)

The fun of it all. Anyway, charity benefited even if my colleagues eyes didn't.

I'm feeling quite good especially as my mate NC is coming over to pick me up and we are going to have a beer and a curry tonight. That's rather unexpected but nonetheless welcome. So I am looking forward to going out in the near future and tomorrow, of course, going to see my specialist to see what the outcome of the last lot of biopsies were. Fingers crossed!

I hope to be imbibing of a few more beers on the way home if the news is good.

Mellow

What a great afternoon and evening I have just had. Lots of people think Freemasons are nasty people and have some sort of weird thing going on. Well tonight I sat next to my host, a few people I have met before and some new people and one of them was a reasonably high up guy in the overall scheme of things but actually I didn't know that straight away at all. The Master was one of my Charity Trustees and he was not only a very nice man but also a very interesting raconteur too.

The common denominator is that we are all similar people - not clones or identical fits - but we all have common moral beliefs and so it is ever so easy even for someone as introverted as I am - to get on and chat to someone as you can talk about anything and nothing and the "rules" and the "borders" of what we can and cannot discuss are part of the understanding we have. That is what is great. Later on I found out that this guy is really high up in the F1 community and he knows a lot of the top people and it was great to ask questions and hear about how F1 started and some of the people this guy knew.

I feel really charged and revitalised now because my friend invited me and because we had such a gas. It was a little cramped at the festive Board (banquet) but there were good reasons (post strike) and so everyone mucked in and got on with it. In fact it just made the evening go with a real swing.

People can be real arses sometimes

It is difficult to know where to begin sometimes but some people are really stupid and lack common sense or indeed any logic or balance to their arguments. I read with some incredulity today a complaint made against our charity ranting on at us about not providing support when it was blatantly obvious that they had cheated the system and we had found out.

It is more unfortunate that I am not allowed to bring my baseball bat out of retirement and do my Charles Bronson bit in explaining to these people not only the error of their ways but the utter waste of time they cause us and the diversion of our good services into some amoeba brained, sub educated, mindless, self centred moron. Believe me, my list of adjectives and scorn have yet to be let loose like the torrent from a broken dam. What an arsehole. Mind you, we do get them and disturbingly regularly. If we could just round all these oxygen wasters up and throw them in the sea we could build a new continent and perhaps save the planet through them being stifled and not allowed to spout hot air. These people should get the hell out of our way and let us actually concentrate on those who need our assistance.

So - you can probably tell I was in a pretty foul mood today as my colleagues are all dedicated professionals for whom this is all in a days work. To me it is an utter afront and an attack on those who are there to help people in the darkest hours.

I was so tired today though and even though I had a long sleep I still awoke tired and had a sleep on the train in and out of work. I hope for a reasonable night's sleep tonight. Tomorrow I will be off to the Guildhall in the afternoon and I am looking forward to a really interesting meeting and to a nice meal and the odd glass of Champagne and Wine followed by a nice Port and some splendid cheese.

A got her Uni timetable today and was up for Fresher's week activities. It looks to be a different time and day each week and so will be challenging for her time management but I really hope she will enjoy the whole experience.

L is happy at 6th form and knows what she wants to do and knows what she has to achieve to get to the Universities of her choice. She wants to teach - an interesting profession, one that I would have enjoyed I think but after 10 or 15 years in industry. Good for her and there is a marked difference in her since she returned from Argentina. It wasn't a huge difference people told me there would be at the time because she is pretty bubbly and the funniest bundle of laughs. No, she has matured that little bit more and under all the usual is a determined and well thought through plan to get where she wants to go. She has got her job (well both have got jobs now) and she is doing well in that and the transition to 6th form discipline, no school uniform and subjects she actually wants to be doing has seen a big change in her in the past month.

Saturday is the BIG day and I am hopeful of a further clear outcome and for some good news on a change in the way things will go from here on in.

Couple of days to go

To find out what my future holds. It is kind of obvious but then again, I didn't get the right answer last time and so I suppose I ought to be prepared for not getting the right answer this time :-)

I'm still tired but I think I broke the back of the work that I was doing today and may well have done enough to ensure that I don't need to be "full on" for the next couple of days.

A hard day again

I suppose that as I am effectively still doing two people's work that it would be hard. I was furiously whacking out stuff today but at least my Welsh and English document was signed off and ready to go to print today.

We now have this big do on the 15th October that I am preparing for and getting scripts and facts ready for all the participants. The weekend really did me some good though and I felt up for the challenge. Tonight we started our Monday night learning session - LOI or Lodge of Instruction starts now and goes to the 2nd Monday in May so I am pretty much booked out every Monday until then.

This Thursday I have again been invited to a rather splendid Lodge meeting in the Crypt of the Guildhall in the City of London. Last year it was a fantastic evening. I particularly like the champagne being poured as you come out of the Lodge and the wonderful feast of a meal we have there in the Crypt. One of my friends from the weekend away will be there for his first visit and I can only begin to imagine how much he will enjoy it. The Master happens to be one of the members of the Charity's Council so at least I will have something to say to him.

I'm feeling OK but I am not sure if I can keep this level of effort up for the next two or three weeks. It is going to be full on.

Saturday's appointment is looming and I am hopeful of a positive outcome. I have announced that I will be carrying some cash with me so that I can visit the pub(s) on the way home. Here's hoping that I DO spend some money then.

Fatigue

I am a little concerned that I am once again feeling tired although I can't say that it is like last week where I was expecting something - didn't get it and then almost out of the blue was laid low. I'm feeling a little run down tonight, slight cough, faintest sore throat and stinging at the back of my nose and what feels to be a cold coming on. I hope that it isn't anything like that though as I really don't need that.

6 days until I find out the results from my tests and I really hope that I will be able to celebrate continued good news.

It was great to get away for the weekend with the lads though. I hope that they enjoyed it as much as I did.

Tired - I should be

Wales was a three and a half hour journey each way. It was a shame that the candidate just didn't feel well enough to come and so finding that out early in the journey I relaxed and enjoyed an interesting day in the car and at the old folk's home in Porthcawl in Wales.

It was very hot in the room we used and so we were all fighting to stay awake. The meal afterwards was really good and they had a brilliant cheese board especially one that had mustard seeds in it. I was home by about 11:30 and so have had a reasonable few hours sleep. I am off in 15 minutes to pick up my passengers and head off to Margate for the Annual Provincial Meeting. No work for me this year - the first time in 10 years and so I can just enjoy the meeting and have fun. Afterwards we will head back to the Hotel, check in and get changed and go off on the town :-) Not quite On The Town (New York, New York) style though!

Fun Weekend Starts in a few hours

My daughter comes and picks me up and one of my friends and runs us up to a Pub in the country to pick up our lift to Wales. We are going to South Wales to one of the Masonic old people's homes. There we will have a meeting and a meal. I am doing a lot of floor work with a chap today who is taking his next step in Freemasonry at the tender age of 94. He isn't wheelchair bound but there is a fair deal of walking involved so he will be in a wheelchair for the ceremony.

We then travel back tonight and I guess get home gone midnight. I then have to get up and pick up the driver of today at 8 in the morning and take him and one other to Margate for a large Provincial meeting there. We are booked in at a Hotel overnight so that we can go out and taste the unusual nightlife of the area. KL and I have been a number of times and have had some of the funniest times.

Poor old Steve in the US had his BCG yesterday and got one of the rogue ones that get you every now and then with all the side effects. Getting hit by a Truck is definately what it feels like. This is the last of the series and in December he will have another poke and peek session to see how things have progressed. If clear, that signals NO BCG which I can assure you is a great relief to hear, even if you have to hear it by letter which I did! There's isn't a lot you can do other than lie down and drink plenty of water and let it take its course.

Another hour and a quarter and we will get going from here. Not sure if I fancy the journey but with three of us in the car it should go quickly enough.

That's different

A bit better today, a few hot flushes and even broke into a bit of a sweat that alarmed the work colleagues enough to tell me to sit down much to my amazement and amusement but apparently I did look like poo and they did look worried bless them.

Oh well, not too much to do in the next few days - Wales later today and back - a 5 or 6 hour round trip I guess and I'm driving to Margate on Saturday which will be fun. I am looking forward to that - it is always a good laugh. I can't believe that it is two years since I was last there though! But then it must be as last year we we were the banner Lodge and did all the hard work! Good grief time does flash by.

My laptop was not fixable but the hard drive has arrived in a new shiny case meaning that I can extract the files from it which I will have to do tomorrow and when I get back from the weekend. I hope to be able to pull off some of the finance files which were backed up but not in a way I can easily work out how to decrypt them!

That was a tough day

Hot flushes, croaky throat, lethargic and tired to name but a few of the things that I went through today. I definately wasn't my usual self although my sense of humour did return later in the afternoon.

It is Council day tomorrow and I hope that I will get a little time with some of my committee to run through stuff. I have worked myself to a standstill today trying to get as much catch up done as I can. It is a crazy place to work at when they are still making changes right up to the last minute. They'd have been surprised if they had ever worked for me as all this would have been done months ago.

It is Steve's last BCG treatment for a while tomorrow and our best wishes for a low misery scale event.

I am off to Wales on Friday for a Lodge meeting where I am an officer who does some floor work for one of the ceremonies. You may recollect that we initiated a 94 year old at the last meeting. I will have the privilege of taking him around the Lodge (in his wheelchair) to do his 2nd Degree. It is a long old trek over there and back in a day and we probably wont get back until quite late, perhaps even the early hours of Saturday morning.

I pick up my colleagues at 8am on Saturday to go to Margate where we have a Provincial Meeting at the Winter Gardens. We are staying overnight on Saturday so that we can have a lads night out. Flocky, KL, GW and myself. KL and I have done this before and had just the greatest ball of laughs imaginable. As long as you take it for what it is then you should find that you have a good time.

I've been tipped the wink on a few more restaurants that may be OK. I am looking forward to an fun night out!

Losing your rudder

I often sit down and wonder "what if" and today, being stuck at home with a brain that is working but a body that isn't I began to consider what on earth I am doing at the moment.

When I got bladder cancer I was pretty much at the top of my game in terms of taking what I had learnt from the industries I had worked in and then gone on to channel that into a pretty unique way of managing (not unique in terms of ways people manage but in terms of a suite of software that actually worked the way companies worked). I had years of experience, I could win work because people tend to buy people and I was setting out future plans and directions for a business that should have seen me retire having built it up to its rightful position. Unfortunately I got Bladder Cancer and then got made redundant.

I went and did something else then, totally out of character but it seemed a good idea at the time. Once I peeled away the thin layer of varnish I knew differently and then I set up the family history business which is still sitting in the back ground here and I've been working on my other start up venture in the background as well as working at the charity.

I'm as competent in my present job as I will ever need to be and having never been an operative doing the same thing year in year out, I am beginning to tire of that quite quickly. As these guys aren't dynamic, a lot of what I have as my core competencies will never be allowed to see the light of day but if they do, and a couple have, they will be someone else's idea.

I blogged about wanting or perhaps needing to get out of the Jet Stream life I was in before I had Cancer and I needed to as it would have been difficult to maintain my work rate given the issues I have had both those I knew I might have and those I actually had.

At the moment I just seem to be in the middle of nowhere. I'm not the industry leading, powerful, energy ball that I was and what I do now I know I will find will not interest me for much longer. I find 9 to 5 and commuting on the same train and same seat and seeing the same people is grinding away at me. I still enjoy the job but I can do so much better than this.

The crazy thing is, I don't know what I want and I've got a good 13 years to give to some industry or other. I don't fit into many organisations because I'm not trained to do that, I go in and fix tings, set them up properly and then walk away and into the next trouble spot. Damn, I miss that cut and thrust and then again, I think to myself that perhaps I just ought to take the pay and take things easy.

There isn't an answer to this at the moment, it is a quandary that I've had to live with since I got BC. There probably isn't a right answer. I know other people have an opinion but this job doesn't hold the responsibility or the opportunity to do much in the way of improving the organisation or myself for that matter.

Let's see what news I get on the 3rd October as that will probably help me to build some ideas.

A 2nd Day off

I cannot even begin to tell you what this fatigue is like. My head works fine but my body just will not do much more than the basics. Sure, it carries me around but don't ask me to run or jump or do anything active. I'm not out of breath but I am unbelievably tired. I have a dull headache and the feeling that I've been indoors for too long and not out in the fresh air.

The symptoms are very much those expected of post cancer fatigue. The thing is there just isn't anything left in the tank. There's fuel and air and everything else but when you put your foot on the accelerator the engine hasn't got any power.

Reading up on it, it is all about hormone imbalances, problems with things like your adrenal gland and therefore not enough adrenaline when you need it and a whole batch of things that don't mean an awful lot to me. The answer is it takes time to get back these things and to be prepared for these odd days of fatigue.

I know it happens and I know I've had them before. I guess I could fight my way past these and go and try and get to work but who am I kidding? I couldn't get to sleep last night and when I did get to sleep it felt like a very short time until the alarm went and once again I couldn't get up and about.

I am just going to have to live with it. I do curse the fact that I cannot put in long hours and keep a sustained piece of work going. Then again, perhaps I wouldn't be in this situation if I hadn't been like that in my earlier years?

Fatigue again - where did that come from?

Out of the blue, this morning, someone turned on the gravity switch and I woke from a fitful night's sleep (it has to be said) with a headache, slight dizziness and the feeling that someone had super glued my body to the bed.

I don't feel a great deal better now at lunchtime and the headache is still here and the dizziness is slight, the tinnitus which is often part of my everyday life these days has ramped up and is quite loud and I feel completely out of it. I purposefully didn't do anything yesterday as I realised last week that I ought to take Friday off and preempt any of this fatigue feeling. The driving and a few late nights were ringing bells in my head (not the tinnitus other bells).

Also this morning my appointment for the Hospital has arrived. 3rd October. Yes, that's a Saturday which is very unusual. However, it is local so I will be able to walk there easily enough. If it is good news I have to walk past two pubs (at least) to get home so that could be interesting.

I can't believe that I feel quite as rubbish as I am at the moment but there you go. It used to happen like that but hasn't for a long long time. Just a little reminder from my body not to overdo things or to remind me that I'm not out of the situation yet.

An Anniversary Missed

15th September, last Tuesday was one year to the day that I had my last BCG instillation. I am amazed that it is that long ago but it was. The next anniversary of note is in October when this humble blog turns three years old.

Things move on again and I notice that I'm gaining more confidence that perhaps this can be put behind me a bit now. It is terribly difficult not to live with this every day as there are reminders every day. Every time you meet someone you haven't seen for a while they ask you how you are. this blog, my general state of health, going to the toilet (yes you still look to see if there is blood every time), the daily tablets and other such reminders.

The other issue is still the most difficult one to live with and that is that whilst I'd like to make the most of my good fortune, no one else really realises what it actually means to be alive when you thought you might not be or perhaps felt that you'd be ill for the rest of your life.

I continue to work on how to square that problem and so far none of the solutions I've come up with are actually that palatable. I know that those around me have no real idea of what I've gone through and I've probably no real idea what they have gone through either. I'd like to go off and do something different and I'm not certain they want to do what I want to.

Straightforward simple explanation

I found this little gem online all about Bladder Cancer HERE. I wished I'd have found that one earlier on. I dared look up when they call you "in remission" as I'd really like to hear those words in a few weeks time it would be more than 2 1/2 years since they found anything cancer related inside my bladder.

I want a bit of respect

Every now and then it would be nice not to end up getting it in the neck for stuff that I haven't been involved in. I'm going to be obscure here. Imagine if you will that something happens, I have possibly heard about it but no one has spoken to me, asked my advice or asked me to do anything and then, when they are half way through a problem arises and suddenly, it's my problem? Worse than that, I get talked to as if I knew all along it was my problem and to say the least, tonight I got pretty pissed off with it.

I'm happy to help but the problem doesn't need to be fixed tonight as the delivery man who has to pick said problem up hasn't been contacted but time is running out and no one has done anything about it and now the instructions which (in my humble opinion) are simple enough to follow haven't been followed. In addition, rather than asking for help they've gone off and solicited someone else's help and that is my problem too as they haven't got back to them. despite me saying that I'll look at it in the morning things still aren't right about that either.

So, in no uncertain terms I've expressed the view that it ain't life threatening, that it can wait as DHL or UPS or FEDEX aren't exactly going to turn up at midnight if you haven't even called them with a reference number either and obviously, as I'm a bloke, that is wrong too.

It really pisses me off and it doesn't matter who it is, when the accusational tone of voice is used towards me if it isn't even a problem under my ownership or even on my radar as this particular thing isn't. I live and breathe the world of body language and tone of voice and talking to me as if I were some naughty child or misguided adolescent is hardly going to gain my unqualified assistance and help me to look favourably on working out their problem for them.

I very much doubt that a good tone has been set for the weekend but I should be getting used to no one talking to me these days or even being here. At least if they aren't here they aren't accusing me of not doing something that through some clairvoyant level I should have picked up when I was at work.

So, that's my little rant over for today let's hope no one tries talking down to me again this weekend or they may well regret that. I was in such a good mood too during the day.

A bit better frame of mind today

I wasn't greatly impressed with work and also my other colleagues on my other venture who I felt were not gracious about the lack of progress when they had in fact not made any progress either. So I am looking forward to sorting them out after I had a go last night.

Today I had a sleep in and the nice thing about that is that I MUST have been tired as I am in a much lighter mood now. I also managed to get a lot of things done this morning and al my various admin tasks are now done. I now have to do my financial stuff though and hope that I can find the back up of the file I did as my other laptop died on me!!

It seems that Steve's 2nd BCG has gone well and so there is just the one more left next week.

The weekend beckons and I am looking forward to getting a load of things sorted out especially these financial things.

One of 'those' days

Well yesterday was one of those days where my sense of humour took a bit of a pounding and even I failed to see the funny side of whatever control freaky thing they have here that means you have to change everything when it is put on your desk even if it was changed according to your wishes last time it was on your desk.

It is the worst kind of management and I very rarely did that to anyone who worked for me. I may have made one set of comments and suggestions as a peer review or actually questioned the technical or commercial content of a document but I never felt the need to fiddle around for the sake of "being the boss" or any other anally retentive reason either :-)

That is what I employed the person to do, as I often reminded them about making decisions and managing their time and projects. If I wanted to manage it myself I would have done it myself and not employed someone to do so. These days it is so easy if you don't want to make a decision you can email or text the boss who makes it for you and then you aren't to blame if it goes wrong.

It was also funny that a small presentation I prepared was remorselessly added to over the past week and became massive. When in discussion I asked how on earth did they expect me to deliver the presentation in 10 minutes, the penny clicked that the original was exactly right in terms of content and timing!!!

Anyway, that's me ranting away this morning - everything takes twice as long as it should. There's never enough time to get it right first time but there's always plenty of time to go and correct it afterwards.

I'm busy as you like today though, I have two appointments and will be home late and I am seriously contemplating taking tomorrow off to catch up on my paperwork and get away from here for a few days :-) I think I have convinced myself that I'm taking it too seriously if I'm not enjoying the work.

Steve is having his 2nd of 3 BCGs later today and as I will be meeting some colleagues for a few beers this evening I shall raise a glass of beer or similar. Steve will no doubt be lying in a darkened room taking it as easy as he can and letting the BCG do its amazing thing. Only one more after this one and hopefully a good length of time off until the next poke and peek to see how he has got on. Good luck Steve. I don't know where the thought just came from but it occurred to me that Steve is "Taking one for the Team" today so as most of the BCG brigade will know what it is like we should, as a team, see if we each can remove a little of the discomfort and share it around a bit. I have to say I felt quite a twinge just writing that last bit.

Testing my sense of humour

My boss, bless him, left a changed document on my desk that had been finalised and signed off and that I had produced, set and published but he changed it - AGAIN!!! Now it isn't unusual in our place because we are committee driven and have to be politically and legally correct in all we do. however, it is normally funny but I wasn't amused this morning as it just was so unnecessary to do it. It was changed for changes sake. As are many documents unfortunately.

Then the Welsh document arrived and we had to work on that and loads of other stuff that I'm good at but really "aren't my job" if you get my meaning.

So it was all a bit fraught and a bit wearisome today and didn't need to be.

I can't see me attending the Hospital until October now and I suppose that isn't such a bad thing. I had an interesting conversation with a chap last night as his friend has cancer and he was explaining just how tired he was and I was assuring him that this is indeed the case. I hope I reassured him and gave sound suggestions as to how he could assist his firend.

Tomorrow is Steve's second of three BCG treatments. 2/3 rds of the way through as I liked to look at these things and just one more left after that. I need to make sure, as I am out tomorrow (again) to raise my first beer to him. It is a year since my last lot of them and I am hoping that I will never need to see them again but you never know.

Well there's your problem

Apparently my appointment got missed and so I have to wait a while until my Consultant, who is just off on holiday, returns to let me know the ins and outs of the results. I've said that is OK as I am sure if it had been anything else I'd have been in at light speed like the first couple of times.

Working at home today is not going as well as it should do as the emails are coming in thick and fast and I am having a little trouble trying to concentrate on what I should be doing - minutes of my meeting!

With a bit of luck things will calm down in about an hour and I can get on and finish it off. It is a miserable day outside and I hope it cheers up a bit when I go off to give this talk later on.

High Profile Deaths

Such as that of Patrick Swayze from cancer really feel like body blows. I'm not saying that other people you know don't but so well publicised are these particular deaths and Patrick was no great age either (as if age makes it alright - it doesn't of course). Suddenly you are confronted with news of so and so's death from Cancer and the level of exposure means you rarely miss it.

You then get the standard 'cancer phrases' wheeled out "bravely borne" "courageous fight" and all that stuff.

For me, it just reminds me how lucky I am and how pleased too that I don't have to be facing my mortality right now although we all know that it could come and visit us at about anytime.

The more you look around, the more stuff can kill you or make you seriously ill without all the stuff we manage to inflict on ourselves!

Work from home

Well eventually I convinced everyone that me going into work and returning a few hours later and then having to travel again would actually mean the best part of 5 hours travel as I am due out tomorrow to give another talk this time to a Lodge in deepest Kent. Kent is a funny place it doesn't look big until you actually have to drive somewhere. If you are on a main road it isn't so bad but on some of the side roads progress can be slow.

I haven't driven down to this particular place for many years but it will be nice to go down, almost to the coast to give a talk. I feel quite harried and slightly stressed out as I have a lot of work to do of my own but also have other stuff leaking through that really isn't mine but it needs to get done. My colleague is back in Hospital I am told which isn't great news. I spoke to him on Thursday and he wasn't great but it appears that on Friday he ended up back in Hospital once again. They need to sort him out but if it is what I think it may be he will be off work for a long time. Fingers crossed they actually find out what is wrong with him.

Back in the land of the living

Got to Lincoln and had a nice day there and then off to my parents in beautiful sunny weather and we had a good day out on Friday.

Things are moving on a bit and the years are beginning to tell. Still no news from my Consultant so I will write to them and see if I can speed things up a bit.

I'm pretty tired even though I didn't do a lot but then I haven't driven the car for any great distance for quite a while (apart from going on holiday which wasn't a long journey anyway). I was close to 5 hours in the car on Thursday, 2 on Friday and 3 yesterday.

Start of a new and chaotic week here at work. Steve Kelley in the US has survived the first BCG of this session but got a delayed reaction so things started late and finished late. I had a few of those myself when nothing appeared to happen and then in very quick order things changed. Thoughts and prayers for Steve's next two treatments will be great and this Thursday and the next and that will be that batch over for him.

I'm busy as you like here. My colleague isn't well again and I can see us having to get on without him for a fair old time if it continues. That will mean adjusting my workload significantly.

Watch this space I guess.

How quickly the body/mind forgets

I saw Steve Kelley's blog this morning and he is about to get another 3 BCG treatments (1 a week for the next 3 weeks). Steve hasn't had these for 6 months and so was reviewing his notes and getting himself prepared for the treatment.

It takes a fair amount of courage to mentally prepare yourself for having these treatments and a lot of the routines I used to do were all about building yourself up for the treatment itself and being prepared for the inevitable side effects when you returned home.

Now I can look back and state what a great thing it was as I am clear. I feel well and I feel that the treatment was in no small measure responsible for this. Mind you, try telling yourself that at the time and it is often difficult to be thinking positive thoughts as the nurse inserts a catheter into you to instill the BCG.

But back to the title. Until Steve posted his blog, I really hadn't thought much about the treatments - I am certain that my mind just put that set of experiences in the "Too difficult to deal witth" section of my mind. It brings it all back to me especially the one that really pulled out every side effect in the books. They say that efficacy cannot be measured by the strength of the side effects and yet these first treatments really did a lot in terms of stripping out the old bladder lining and encouraging new non cancerous growth. I still marvel that someone ever considered that sticking BCG in your bladder may have such a profound outcome.

I am also glad that I was young and fit enough to take the side effects too.

I suppose I ought to be glad that the mind puts a lot behind you. When I do get to think back on my time with BC I do realise what I went through and can get upset for myself, more so than I ever did when I lived through all those things.

Anyway, I'm off this morning to go and give a talk about the charity and then I can head off to my parents and spend a few days with them which I am looking forward to.

Getting ready

Still no news from the Hospital and so I can only assume as it is 4 weeks this Friday that things are OK and they don't need to see me until they can fit me in.

Not sure what to do when I hear the results this time. Last time I was sort of disappointed almost but this time, well, lets see what happens this time. All Clear would be a good set of words to hear. See you in a year would be nice too.

Must get off to bed and get packed ready for tomorrow's sojourn up north...

Crazy work day

I had to get all the exhibition stand stuff out and off to loading bay, on my own and then it was Grand Lodge day so hundreds of random Masons wandering around the building whilst I was trying to finish off my presentation for tomorrow, prepare all the committee papers and then found out that some finance papers were being worked on when I needed the photocopier and then my chairman came and sat with me for about an hour of pre meeting briefing and eventually we had the committee meeting which just made more work for me!

I wasn't amused. I have just got my stuff together for tomorrow and will be heading off to Lincoln to talk to about 100 Charity Stewards and Almoners and so I need to remind myself to just be slick and to talk slowly as my presentation runs at about 20 minutes at break neck speed and 25 as it should be delivered. It is really good (it is totally different from anything they have ever done before) and it is interesting in that the research I did for this and the talk next week should really make people sit up and take notice. Our charity is in the top 1% of all charities in England and Wales! Wow. We are quite large but have a small staff ratio compared to others so some of this stuff will come as a great surprise to many. I hope that I can implant in their minds just how impressive we are in terms of the work we do.

Things appear to have settled down at the moment - not sure how a 160 mile trip up the motorway will affect me but let's see. Will be great to go and see my folks on the way home and show them I am still alive!

What a Day

I ended up having some interesting urination issues - blood in the morning a couple of times and not nice - a full on experience - yuk. Followed by a sort of mid day well you can see blood there but it was OK. Just before I went home I passed a small ferry sized clot which really turned me over and then when I got home all was OK again.

Tonight with beer to lubricate the pipes, all signs are gone which has pleased me a lot!

It was another great evening with my friends. You know where you are with your friends and you can get away with many politically incorrect things and laugh at silly stuff and know that we aren't being bad, just enjoying a night out and what today people think are insults (bunch of wet liberals that they are) is actually to do with all the things that hold friends together and keeps us being what we are after 40 years or more.

I thought it was really quite amusing that my "wedding tackle" and bladder and urinary equipment are made fun of and light of in the company of my friends. My friends CAN get away with these "low shots" and none too subtle innuendo. That is what friends do - we laugh at our problems and we make light of some of those things. One of my friends lost his father the week I was diagnosed and yet we worked our way through that and bad as I feel for not attending his funeral we can look on it now that I came out of it and I'm here. His Dad who was such a great friend of mine when I was a very young guy, taught me so much and we all know that had I have been well enough to attend I would have done. Unfortunately it was when I was bleeding all the time and on my way home from Yorkshire, stopping at every service station that the news arrived that he had died.

It is one of my regrets and yet also a big bond between us that as his father died, I was being diagnosed with something as serious as....

It sounds like a serious night but actually we just had a lot of fun and for old people, we seemed to be getting many laughs per minute in!

Whew clearing up

That was a relief. Not exactly clear but not claret either. Just a hint of what was there this morning and I'm feeling a little bit better. It does stir you up no matter if you know that it was expected and what it was.

Not a good start to the morning

A bladder full of claret and clots came flying out and the second go wasn't a lot better. That got my attention this morning. It is pretty revolting as you can probably guess but I didn't need that. Mind you it has been three weeks I suppose and that is still time for the wounds to sort themselves out.

I'm going to get ready to go to work but will see how it goes as to how long I stay there. I ought to be lying down flat I think.

No News is

Good news as they say and I still haven't heard back from the Hospital so I can only assume that the results are OK and that they need to see those worse off than I am.

I was interested that 2 years without recurrence may be considered remission. That would be nice to have I think. I can't say that I am exactly where I thought I'd be. I feel that it is all a bit of an anti climax at the moment and that I'm not arriving at some place I had thought I would.

Mind you I've been saying that for years. I am still having the most vivid dreams and they aren't exactly inspiring, they seem to picture a dreary future, caught in a dead end job and not really doing anything coming out and away from BC when I think that all I have learnt and experienced should be helping me do or be something.

Fed up sort of day

I spent most of yesterday on my own and it looks as if I will repeat that today. I have stacks of Admin type work to do and so stuck in front of this computer really is the last thing I wanted.

Next week is going to be busy - even more so because I have to pick up work that isn't mine over the first two days, then have a meeting which will need actions and I'm then out for the last two days of the working week up in Lincoln giving a presentation and then over to see my folks which isn't so bad.

As I am hardly around I need to fit about a weeks worth of work into today so that will be fun!

The flip flop of my moods, I suppose, shouldn't take me by surprise any more but this is me these days, one day I am my usual happy energetic self and the next I have no energy and no real desire to do anything. All my get up and go got up and went.

I still maintain my sense of humour but today it is at its most sardonic and acerbic so it is best not to get in my way on a day like today.

I'm sure I'll be OK later on during the day, it doesn't last long. Having a bad day is just part of the experience; I don't like it and I wonder quite how long it takes those around me to realise that patronising is not the ideal way to make my mood change. In many cases that may well have been the reason it got darker in the first place.

A day on my own

It is 100 years since Girl Guiding was started and so Mrs. F. who runs a thing called Rainbows (pre Brownies) but has been involved in the Guide movement for many years, is off to the 100 year celebrations at Crystal Palace with another 6,999 Guides and leaders. There are events all over the UK. When I was a youngster I was in the honour guard for Lord Mclean (I think) at the Diamond Jubilee also at Crystal Palace.

Both A and L are young leaders in the Guide movement too so another thing to be pleased about as they are both making a contribution to these movements voluntarily. As I also tell them, it is also a useful skill and prospective employers are always interested to know that you actually take some responsibility and not sit on your arse and play on your PlayStation all day!

I have loads of admin work to do so I am sat in my office working my way through that and listening to some old 70s music - if you remember the Strawbs and Lindisfarne - then I am listening via spotify (http://www.spotify.com/) on line which is fun seeing if I can remember all the lyrics. Sad git that I am, I can :-)

As for my health, I'm feeling a lot better but still tired. I feel a little bit sore around my groin area but other than that and the occasional throbbing on the back of my hand - all is well. I still don't have an appointment to see my Consultant. I feel an email to her office coming on if I haven't heard by later this week.

Only a 4 day week

But I am tired all the same. It hasn't helped my colleague being off and so I have been playing catch up with his things. everything is a rush at the moment and yet I thought I had most of it pegged. Unfortunately the biggest bottleneck is the boss. He knows it and we did have a laugh today as he actually left us to do some work, we had packed loads of envelopes ready to go when lo and behold, he had to come back and have a look but I reckon it was a wind up.

Next week I am off to Lincoln to do a talk which I am really looking forward to. The whole week is filled with preparing for my committee meeting and then I have to get my presentation sorted out go to Lincoln and deliver that and then go and see my folks which will be nice.

The week after that I am off to another meeting to give a different talk to a Lodge about the 4 main charities (I just work for one of them). All hell breaks lose the week after that as we prepare for our annual forum. It is all good fun but I'm sure if I sit down I will fall asleep tonight in my chair.

FANTASTIC News for Steve

A great piece of news for Steve in the US as he is all clear and his 4th Judgement Day means 3 more BCGs and another tick in the box to keeping clear of Bladder Cancer. It is 15 months for Steve and 28 months or so for me.

It never gets easy to go and have these as there is always a nag at the back of your mind about what they might find but thanks to everyone for thoughts, prayers and whatever you managed to cross today.

I had a nice day, a good meal, curiously enough with a really nice man who originally came from Manhattan - he is a Shriner which is almost unheard of over here but he hopes to be setting up that venerable institution here in the UK and Europe. It was interesting to hear how much these guys do over in the US, Mexico and Canada and the difference their 18 Hospitals make. I'm looking forward to meeting him again soon.

I am really pleased that Steve's results are good though and that the ongoing treatment is doing its thing.

Steve's Judgment Day

3rd September 2009 and Steve Kelley is about to have another Judgment Day. This involves a Cystoscope inspection and if that looks good, a further course of BCG.

It would seem strange to say make it clear so I can have the treatment - if you know what having the treatment is like but actually, that is just what Steve needs to hear so that he can move on to the next base and take the next step in his recovery.

Steve and I have never actually met or spoken and yet I have this really good feeling that we would hit it off brilliantly. For a first, all cancer survivors have a unique bond with their fellow survivors and also those warriors who may not be as lucky as us. Unwritten rules and we "just know" what we have all been through and what we have achieved. Secondly, sense of humour and sense of stoicism about what we have, how we deal with it and also camaraderie in as much as we both blog about what it means to survive.

We both tackle things differently, we both write differently about it but I am really buoyed by having other sufferers touch base and share their stories and experiences and our unique club (which none of us sought to become a member of voluntarily) holds some wonderful anecdotes and experiences which give hope that this vile, bully of a disease can eventually be defeated.

If you pray - please do, if you subscribe to fingers crossed then keep them so on the 3rd September. I will be at a meeting of like minded people enjoying a nice lunch and comradeship tomorrow when - I guess - Steve will be being examined. I will ensure that I raise a fair number of glasses during that time :-)

I still haven't heard when they want me to go in and see the consultant - no news being good news - I can only imagine that I am on the slow back burner of appointments - if it was serious - they'd have seen me before now (they did early on).

Nothing like a show of blood to get my attention

In a way I had an inkling that it was about to happen as there is a very slight tingling sensation and you kind of know what is about to happen. Even so - it wasn't nice when it did happen but it was just one clot and the associated port coloured urine to go with it. It always unsettles you because it is just so unnatural to see it.

They realised that something had happened but in fact worse was to occur as my colleague had the opposite trouble and was retaining urine and ended up at A&E again being catheterised which was a relief for him. He didn't get septicemia this time but even so - he needs to go talk to his consultant tomorrow about these recurrences.

What that means is that I may end up taking on even more work if he is out of action and I hardly need that as I have plenty of work as it is now.

I'm not at all comfortable with life, the universe and everything at the moment. I don't know quite why that should be? I suppose that I am bound to feel like that a lot in these coming months as I work out what everything means now that I appear to be getting better etc.

Jazz night tomorrow - which will be nice apart from the appalling weather.

Back to work tomorrow

Not looking forward to it but then again I have lots of other meetings to chop up my week into bite sized chunks. I need to try and work out how to get stacks of work into a few days as well now that I have days out coming up.

I didn't get much done today, went for a walk, bought some beer, sat in the sun, drank some beer and that was my day done really.

Still not convinced about what I want to do next though.

What am I doing here?

A question we may all ask ourselves from time to time I suppose? Recently it is one of those questions that invades my mind when I let it and then I can't get rid of the damn thing. Last night it must have been 2 am before I finally went off to sleep as my mind was racing around trying to work out what on earth is going on at the moment.

I actually started for a very short time to feel sorry for myself or more like it started to realise what I'd been through these past three years. Then I considered that what I thought might be a sort of freedom isn't actually that at all. Just remission (maybe "just" isn't the right word in that context). Any sort of remission is good what I meant was that it would be a constant for the rest of my life and that is when I wondered if I'd be strong enough - for the rest of my life - to continue going into Hospital, having operations and so on. There must be a point when you say "enough is enough"?

Anyway, it appears to be the time for reflection and formulating plans to go forward. My mind is full of crazy stuff like give up work, go on a year's sabbatical, see the world, do something locally, give up anything that smacks of organising other people's lives and so on. It's just a feeling to get away and get some me time and try and re assess, re prioritise and re arrange my life and my brain. The plans that I had three years ago that had been formulated over many years had a different direction. I've done lots of short term tactical things to live through the last three years and swerved in and out of ideas and schemes and as a previously well organised person, I'm living a less than organised life (although perhaps a little more settled routine wise). I think I'm through that now and suddenly there is the opportunity of having the last 1/3 of my working life doing something different to what I've done before.

Insomnia and Bad Dreams

Interestingly for some reason the dreams I tend to get appear to be memorable only around about the time I go into hospital or have treatments. I suppose my mind is going ten to the dozen at such times.

It is the early hours of the morning and I was dozing away and suddenly there were flash backs of the time the children were small and trips we did then and some flash backs way before then to a place I cannot have been to for 40 years or more, just remembering the heat and smells of a late summer day on a walk when I was young. Now I'm saying they are bad dreams and now describing them they don't appear to be that bad but they have stirred up questions that I don't like the sound of much. Big doubting questions about what I've done with my time here on the planet and whether those good times with the children could have been better, could I have done more, did they enjoy it and a raft of other strange feelings about the past.

Now the trouble is that the past is the past and in general terms whilst there are some regrets, in reality, what is done is done and I can't change any of it and I'm not normally troubled too much by the past once I've dismissed it and moved past it. A bit like I was saying a week or so ago that the holiday was about the experience and not necessarily the photographs I brought back. The moment was the thing.

Anyhow, not that it matters much as I'm sat here at my PC in the early hours and I'm wondering quite what on earth all that lot was about. I'm sure there is some strange lesson in all of this but I'm blowed if I can work out what it is. I'm guessing it is just another part of the territory. Perhaps it has something to do with the series of cancer programmes that have been running this week on the TV or perhaps it is something else in my subconscious trying to make itself heard. Well I suppose I've heard it - I just need to interpret it and understand it next I guess.

Bank Holiday and Sssshhhhhh - the Sun is out

Well how about that - it is the Bank Holiday weekend and the sun is out and whilst it isn't overly warm it is quite pleasant out there.

It is the end of August and a strange thing happened this morning when my mail arrived and there is an investigation into a potential pension pot that I knew nothing about although the company rang a bell. I wonder if it is my old company that was bought out and that I was made redundant from about 3 years ago? It is in the same area and it was owned by a number of local businessmen. Perhaps it was - it will be interesting to see what will become of the investigation.

September looms large and that must mean it has been close to a year since my last BCG treatments - in fact I think they started a year ago Monday week as they missed the Bank Holiday Monday. It doesn't feel like a year has gone by though.

This week sees Steve Kelley having his next Judgement Day - a Poke and Peek cystoscope and some BCG to follow. We are hoping for a Hat-trick and that we all get to keep clear, move on and progress in the right direction.

My boss returns on Tuesday and somehow in the next two months we need to fit loads of work into the time. Unfortunately - my colleague is off on holiday which is OK but it means that I may have to pick up his work when I have a full workload myself. I have plenty of visits and presentations to write and deliver. It will be a challenge and I'm sure I'll be whinging about it.

L got a Sunday Job but the day she starts was the day we were meant to be at my parents which means they will have to come back a day early so she can start work. Its all complicated stuff, she passed all her exams and at the right sorts of grades and starts 6th form next Thursday. A is looking for a job and off touting her CV around at the moment. Her University doesn't start until the end of September and that is preceded by Freshers Week. I think we also have managed to satisfy the funding people that the company I used to work for (see above) no longer exists and so that, after months and months of messing about, looks to have cleared the way for A to get her funding. Crazy system and an utter nightmare to work through the intransigence of a poorly thought through business process - they should get a professional in there and sort out the exception process.

It is looking so good outside that I think I ought to get out there and grab some rays rather than being sat at my PC. Bye!

On reflection

I've been doing an awful lot of reflecting lately. The premise that this could be clear really is another step in the right direction. There aren't any treatments on the horizon as I've had my maintenance and finished that around about September last year. This set of biopsies they said looked clear and this time there was no red patches or angry marks left in my bladder (that they actually mentioned - normally they do) and so the out patient appointment should be something that I will actually enjoy going to.

There remains what is the next steps in the ongoing observations stage and whether or not these full biopsies (which I read the other day are the "gold standard" for staging, grading and observing) are going to continue and if so at what frequency and for how long. I'm bracing myself that these are for life until they find some other way of sorting this out.

So what's changed? Well it is most peculiar really as I've now got a bit of a hole in my life where bladder cancer used to be and I'm suddenly getting back to my old self in terms of getting things done and getting back on top of my time management. Stuff that I thought had changed a long time ago for good is returning and most markedly the want to shake off the apathetic part of the changes I've had and get back to being a little more organised and a little more proactive.

Additionally there is this urge to do something again. I considered going back and finishing off my University Course but that can wait I think. Whilst I really enjoyed it, I can't see that I want to have that level of commitment right now. I'm getting involved in more getting out and about. I'm off to Lincoln soon and can drop into my parents on the way home and then off down to the depths of Kent/Sussex a week after that. I actually fancy a 6 month vacation but I doubt that will happen. I don't feel like making my working arrangement permanent in fact I'd like to cut back and only do a few days a week although I can't think why.

Yes - a very strange period indeed as everything feels OK but isn't. I feel that I could quite easily just walk away from here and go off and do some wandering for a while and additionally other stuff that used to be important just doesn't seem to be so now. There's an opportunity to go crew a boat through a friend of mine - that would be 6 weeks or so and all I have to do is find my food and beer money. I was sorely tempted to go and do that - it just seems a great thing to do at this moment, just get away from everything and just take some time to myself and redefine what is important and what I now want to do.

I have to say that I find this quite an unexpected outcome after all, it has only been 2 weeks since my operation but the news that perhaps the worrying part is over may just be what has triggered this next phase off. It will be interesting to see if it is just a set of feelings or whether I do actually end up doing something about it?

The blood letting

Well not quite. The scab ejecting is perhaps more accurate. It sends a shudder down my spine and gives me the willies just thinking about it and so passing a rather large scab and associated port coloured urine this morning really didn't get my day away on the best footing.

I decided not to go to work so as not to aggravate the situation - you may recall a couple of operations back - I managed to really make myself bleed a lot through exercise and a couple of miles waking to and from the station either end of this morning made me reconsider whether it was a chance worth taking.

When you have blood in your urine there is also a very slight tingling that goes along with it inside your urethra which also isn't pleasant - it doesn't actually hurt though.

So I will continue with my work from home today and give myself a chance to get shot of all the biopsy scabs today.

Working at Home again

I bit off a bit more than I thought with this document. It is turning out to be a major undertaking. I thought a day would break the back of it but it is day two (and half way through) and still I am crashing my way through without much in the way of a result - just loads of pages that need to be aligned into a coherent story. At least I have the Internet radio going www.spotify.com is impressive.

It is GCSE day here so L is going to find out how she has done in her exams. We will know later on today how that has gone as they have all disappeared off to the school to get them.

I appear to be fine and glad I am not having to go up and down by train to work. I will probably go in tomorrow but again, the strange part of this is that I add 3 hours to my day to do what I can do sat in my home office! Bizarre as that may seem it is still the mindset of most businesses these days - it is a crazy scenario as I don't get as much work done at the office as I do locked in my own office here.

End of the second day

Yesterday we had a reunion - at the last minute - of the 3 families. Not a script for the Godfather but the 3 families who have all grown up together, holidayed and meet up a number of times a year including Christmas.

I got to sleep about midnight and I was dog tired. Today, the family came up to see my building and have a tour and then as they left after lunch a friend called and we ended up drinking all afternoon and getting home after a curry in London way gone 9 pm. I am working from home thank goodness tomorrow. I am going to bed early tonight as I can barely keep awake.

It was interesting when I said that I felt I needed to get away on my own to think things through. Interesting why? Well my mate said he'd come along with me - which kind of defeats the whole object really :-)

First Day was OK

Kind of. It was very tiring and I kept forgetting that I must not stretch so. I was quite tired so I left early and got home about an hour early. That was just right - perhaps I'll keep that along for the rest of the week to ease myself back in.

It was nice to see my colleagues again though and there was much lively banter going on. Nice to be back.

Getting ready to return to work

I ought to be grateful that I can actually go back this time after the last time and my close to 6 weeks off.

It will be a bit rude getting up at 5:30 tomorrow again but hey, I need to get back to it. I now need to wait to find out when my appointment is due. Hopefully not to clash with my trip up North and then on to see my parents.

I'm wondering also whether to take myself off for a week or two just on a sun holiday even if just on my own. I just fancy getting away and having a long think about things.

Things? I think that the news is pretty good from the biopsies. I think that this can be a turning point in terms of getting beyond the serious bladder cancer bit and on to living with it. I'm probably not making much sense about this at the moment. I think that this is a threshold, a change in the journey and it means that I can feel a change in my mood, a slight lightening perhaps but also a void that may need to be filled - I just don't know yet.

Anyway, just something I'm becoming aware of. Things change all the time and this next set of results will, I hope, allow life to move on. Let's face it, it will never get back to "normal".

Crazy Sunday Sport

The Ashes are returned, the World Championships finish and F1 is back. It's been a non stop day of channel hopping, internet watching and trying to coordinate it all. Luckily a few pints of beer to steady my hand on the remote and all was well. It cannot be said for my notebook which has again given up the ghost.

Back to work tomorrow but I do think that I might need to consider doing some work at home or only doing a few days this week. I do feel surprisingly weak considering I've had a week off to recuperate. Anyway I will see how I feel when I get to work.

Gauging how my recovery is going

I went out last night and was home at about 11:45 - I had a few beers and a nice curry with great company. However, this morning I didn't get out of bed until close to noon. I was really tired. I knew that I was struggling a bit when we were at the pub. It was an interesting sensation as I had walked down there. It is a fair walk but not particularly long or arduous. I just felt slightly light headed - and yes - that was before I had a beer :-)

I am taking it easy again today. I think I will go into work on Monday but will probably just do a few days and do some days working at home to make sure that I recover properly - I forget quite how much these procedures take it out of you.

The weather is behaving itself today and so it is quite pleasant being at home and just lazing around.

A beer an a ruby

A Ruby Murray (Curry) to be exact. This time last week I was cursing my luck in my ward, unable to reach my MP3 player, eating my Jacket Potato and Baked Beans and trying to get comfortable.

Tonight, our local Curry House has provided discount vouchers and so 4 of us are going out for a few beers and then a nice curry. I am going to walk down as it is about 20 minutes away and downhill so not too strenuous.

I am looking forward to it and just hope the showers have passed by now. Thank goodness it is a lot cooler (less humid) today than it has been.

Getting There

Well I feel a lot better and do so everyday. A has departed for the V Festival this weekend - it looks to be a good one weather-wise and a good line-up of bands including Oasis - so I'm sure she will enjoy the experience.

Formula 1 is back and I'm just watching the first practice session, the Ashes cricket is on, the World Athletics too so there is plenty going on. Somewhere along the line I was meant to be doing some finances and a little work but what I might end up doing is spending a day or two next week doing that and go back part time.

I continue to take it easy remembering that on one of the earlier occurrences I managed to set myself back quite seriously through driving and exercising too quickly.

Ooooopppps don't lift that

Totally forgot tonight. The shopping arrived (the Internet is good sometimes) and I just went to help out (as you do). Picked up a bag and was immediately reprimanded and then I realised quite how heavy it was!

You forget so quickly that you mustn't strain yourself. The trouble is, you just don't feel that you can't!

It doesn't look as if I've done any damage - I'll check tonight and tomorrow.

Things - their transient nature

I was also considering that "things", objects, keepsakes, even photos, videos of my family and things generally don't mean much to me since I have had Bladder Cancer. It may sound strange but I am not so attached to them now as I was before. There are now very few things that I would like to hang on to or keep.

I like seeing my photographs but realised that being there and experiencing the places was better than having the photos - I can always look on line and see where I have been after all?

So maybe there is some sort of switch that goes on/off that takes away the need for nostalgic keepsakes and attachments to inanimate objects?

Again, just one of those things that I have noticed. I really should get out more :-)

It never goes away

Interesting thought I had about this overnight that you never really get closure on bladder cancer in particular. By that I mean that you are always monitored for signs of recurrence. Some people I know are on the second occurrence of BC. I think in their case, if their BCG doesn't work then they will need to have their bladder removed and curiously, at that stage, you no longer have bladder cancer as you don't have a bladder for it to operate in.

By hanging on to your bladder you are always susceptible to BC returning. In a way, you can understand why their is a two part battle going on. On the one hand you do everything to keep well and on the other hand your brain is the other thing you battle against. Keeping on top of it is important, keeping positive.

More Pictures - Copenhagen Opera House

The absolutely stunning sight of the Copenhagen Opera House. 14 Storeys high. The remainder of them? They're under the ground level. The roof is the size (area) of two football (Soccer) pitches. An amazing addition to the City. I really liked Copenhagen - it was great to walk around and see it and the spires everywhere. The Canal sightseeing trip was excellent. As before, click on the image to make it larger.

Harry Potter

A spur of the moment decision this afternoon to go off and see Harry Potter and the Half Blood Prince. It was OK and we went to a place called Bluewater. I have managed to avoid Bluewater since it opened - I thnk it is Europe's largest shopping complex (I could be wrong) . Thank goodness for google maps you can see an aerial view below.

I think I have managed not to go there for 9 years. It looked OK though and there weren't as many people there as I thought there would be.

It was actually quite nice to get out of the heat and into some air conditioned comfort.


View Larger Map

Lazy Day

It is really hot today - they say 30 C later. I am just taking it easy. I ache a bit and whilst I'm not that bad I do feel aches around my groin area - it feels quite tender and so a nice easy time is called for.

I've sat indoors for the morning and will probably go outside as the sun slides around the side of the house. Middle of the week and I hope that I will be fit enough to return to work on Monday, it certainly feels OK so far. i might even give myself a part time week next week to ease back into work.

A Beer with Flocky

That was nice. A couple of pints of beer at lunch time down at my local pub. Very nice too. Beer is OK to lubricate and irrigate the bladder. Just mustn't drink too much so as to bring on a headache of course.

It is a lovely day outside and so I have a couple of beers in the Fridge and will sit outside and enjoy a cool beer in the afternoon sunshine. This recuperation lark is nice....

Each day gets a little better

Of course that's how it should be and each day sees an improvement to the aches and pains from the operation. I'm certainly a lot better than I was last time and whilst I feel that I could get up and do something more strenuous, experience has told me to take it easy this week and do nothing to set myself back.

Because you can't see the internal injuries it doesn't mean they are not there. Mind you it doesn't mean that you shouldn't get back to normal as soon as possible either, you just have to take it slowly.

Flocky Bicep is coming over to buy me a coffee or a beer later today which I will look forward to as he is great company and bound to make me feel good. Not that I feel anything other than positive at the moment. I certainly have my sense of humour back and the depression and gloom of a few weeks ago are long behind me. Clear again means that the possibility of recurrence continues to diminish (but not go away).

This is another step in the bladder cancer journey, another tick in the box, each time you pass a milestone, a new path opens up and things become less dim, clearer and the path ahead looks more positive. You can start to look wider, higher and towards the horizon. You can begin to plan a bit more and you are less inhibited by your disability for disability it is. Physically and mentally.

Looking forward to seeing Flocky later today.

Boiling up a bit

Not sure what this is - it feels like after the BCGs I had sometimes. If I eat I get really hot straight afterwards and I'm boiling hot now too. I know it is reasonably warm outside but I've felt quite hot since I've come back and have been sleeping with a fan switched on blowing on me for two or three nights now.

Other than that I'm a bit tender and ache a fair amount around my stomach and groin area. It is still a little stingy to urinate but nowhere near the stream of fire of the past.

Getting used to sitting around and attempting to not strain myself is fun. Day time TV is rubbish and perhaps tomorrow I will spend a little time taking myself for short walks to ease the boredom.

The Amazing Rock Church - Helsinki

How about this Church, carved out of the bed rock itself. Quite modern but a most wonderful roof dome above. Click on the images to make them larger and see the details.

Continued progress

I have the usual aches and pains including, now, my arm where they probably pulled me about a bit.

The annoying thing is that I really can't get about or do too much or I risk knocking off the scabs and starting myself bleeding and having to have more time off.

So I am sat around here just taking it easy - I suppose there could be worse things to do?

I'm Not Dead Yet

Those who know me and my sense of humour will be pleased to note that I wore my Monty Python "I'm Not Dead Yet!" Tee Shirt the morning after my operation much to the amusement of some of the medical staff.

I have to say one Doctor gave it a double take and actually walked back in. "It works on so many levels" I told him. And that it does.

I'm not dead yet, I'm very much alive and the news keeps getting better and better.

I learnt tonight that I may have to continue to have these full cystoscopies for the rest of my life but at varying frequencies although one authority recommends them yearly for the rest of life for high grade patients such as my case. I suppose if it means having those and staying alive most of us would come around to that way of thinking. But again, advances in medical knowledge may mean that it will change over time anyway. Who knows, I'm just glad that I'm still here 3 years after I thought I wouldn't be and I'm more upbeat after this operation than I have been in a while.

Anyway, I made my little statement and kept my sense of humour and as someone told me after they rang a few hours after I got out - I was still laughing and joking even though I felt rough. It's good medicine, you should try it sometime!

*** Scar Wars VII - Bladdered & Bruised ***

Scar Wars VII

In a Galaxy far, far away
Our hero Dave-Sky-Nando* has to endure another trial by cystoscope.

Darth Urologist and her team have a plan to flypast the potential moon (don’t drop those pants Dave) to the planet Bl’dar and entering via a narrow well guarded pipe gain access to the inner lining and there search for mutant and militant cells of insurgents of the Atypia, Precancer and Cancerous tribes.

Any cells of mass destruction were to be treated to shock and awe tactics of the allied NHS forces.

The only way to mount this attack and fly the cystoscope through the narrow and tortuous passage is during sleep induced by her evil henchman Darth Anaesthetist. Our hero, overcome by mind bending drugs and sleep inducing chemicals is overpowered once more and the Empire does its worst.....

Dave-Sky-Nando, Jedi Master, Cancer Survivor and all around good guy, entered the concrete and glass citadel and the ward that is the pre-theatre preparation centre. He was pleased to observe that at last, the old surgical operating gowns “for Hospital use only” which – let’s face it are not a fashion statement, aren’t big or clever and didn’t exactly fasten properly leaving the patient to “moon” those within eye shot of the wearer had finally been consigned to the incinerator. The new, rather tasteful gowns are two tone blue, that tie up properly and overlap sufficiently so as not to leave the rear exposed unless you want to wear them that way.

I must be getting used to it as blood pressure and heart rate were high but not out of bounds like normal. An MP3 player with classical and easy listening music assisted the 3 hours between admission and being wheeled to theatre to go reasonably quickly.

The ritual of going through your details many times to ensure they have the right person and the other various checks are undertaken at this time:

• False Legs or limbs?
• Metal work in body?
• Jewellery?
• Loose teeth, crowns, caps?
• Mobile phone, hidden camera?
• Picture of the Queen, comic or other publication?
• Sharp wit?
• Uncut toenails?
• Aircraft carrier, space station?
• Criminal record (Mcfly, Robbie Williams etc)?
• Machine gun, IED, tank?
• Any drugs, cigarettes or alcohol?
• Any scissors, water, lipstick, packed lunch or other dangerous stuff you can’t take onto aircraft?
  

Once you have convinced them that there is just you under the operating gown they finally leave you alone after you have signed your consent form.

This time and probably for the first time, I let things just happen as it is going to happen at their speed and not mine, I can’t influence anything including their schedule and the way they do things at the Hospital. I see my consultant who has a quick look at the notes and assures me as the anaesthetist checks me over that it is the usual inspection and do I have any questions. I don’t except that when I finally find out that the Registrar did me last time and I look into the eyes of the butcher who gave me such a rough set of biopsies then. I don’t know at that time, but I soon find out that he did me again this time. His trademark being that you end up with a catheter for his cystoscopies. A lesson from some of my Jedi friends might be in order....

Wheeled to theatre the procedure is run through again, checking who you are, if you have any contraband secreted about your person. I’m Ronnie and I’ll be preparing you. He did well and the cannula went in easy enough and the check list was mechanically run through whilst we waited for the theatre to become empty and for the anaesthetist to come in and deal with.

RU1?

RU12?

IM1 n U?

IM12,

U2?

Stupid Droids :-)

A guy who looked like Yoda tipped up and he was the head anaesthetist – I had met the junior who was also there. “”Sleep dreams sweet put you this will” said one, the other added “holidays nice you think now of”. “Ouch” I said as he started doing something nasty with the back of my hand where the cannula was and I could feel quite sharp pains in the vein there. They then stuck a mask on which was a first and so a combination of things eventually saw me off to sleep.

The next thing I remember was waking up, oxygen mask on and being really pissed off that there was a catheter in me again. It makes you feel as if you want to urinate all the time but can’t. It is annoying when before you haven’t had one and then you wake up and find that they’ve pulled you around enough for a second time to do it again when before it hadn’t happened. You also know that you aren’t going home that night like they told you – many times before - that you would. I was already pretty much sure that I’d be in overnight as it was an afternoon slot.

Two hours after going down to theatre, I was in a ward, without my belongings which were somewhere else as I wasn’t in urology where I should have been but another surgical ward. At least it wasn’t the one I was in last December which really was the ward from hell. Here the nurses all seemed very nice and after the two others patients I had shared the pre theatre ward appeared, our belongings turned up. Mind you, as I was all bagged up I could hardly move, another reason I hate catheter is that you are really limited in your movements. I had to wait until Mrs. F. turned up to get my stuff out of my bag especially my MP3 player.

The automatic bed was working well but again I had real difficulty trying to adjust my posture as I had this bloody tube hanging out of me.

It was on return to the ward that the full horror of the next 15 hours or so became blindingly apparent to me. The chap next door to me was obviously struggling. He wasn’t a urology patient but had just had a violent reaction to morphine and wasn’t allowed to eat or drink. However, he had what I can only describe as tourette’s syndrome. Up to 4 or 5 times a minute for all his waking hours he would be moaning, groaning, sighing, ooowwing, arrring, coughing, spluttering and so on. Now the nurses realised and tried their hardest to sort it out and tried medication etc. However, on and on it went. I used my MP3 player to best effect that I could without making a nuisance of myself and finally at 2 am he finally fell silent. I managed to lie on my side, deaf ear up, and get a few hours sleep. At least at about 4:30 when he started again I was sufficiently with it to turn on my MP3 player and try listening to that. I must note that my MP3 player gave up the ghost at about 9am and so if there is a next time I ought to take both players as this one needs a USB port to recharge it.

At 5:30 I had my vital signs done and good grief, 139 over 89 and 86 heart rate – amazing almost normal for me when at home where I try and keep 130 over 90 as a maximum. They then took out the Catheter which was a relief but it was a large catheter not the small one I had last time so I felt quite sore. I had been bashing the water back since 4:30 and so was ready to start to show them 3 clear urinations for which they leave a bottle. I was able to do two before breakfast and one afterwards. However it took over 1 ½ hours between sorting that out and actually getting discharged from the Hospital. I had to slightly force the issue but I was pleased to get out and get home.

The best news of all really is that it all looks clear, no red patches or anything else unusual they still took a full range of biopsies though. The lab reports I hope fully support that and even more than that I hope that this really is the last time I have to go through these full biopsies and cystoscopy again. Mind you, I thought that the last time until I saw my consultant. They also said they wanted me to do more BCG but then changed their minds. I’ll find out in a few weeks when I see my consultant.

There’s a bit of a mess where the cannula went this time and I am a bit tender today – I guess they smack you full of pain killers and today is the first day that bruises are coming out and that I am actually feeling sore in all the places you really don’t enjoy being sore in.

This time I knew the drill and what was expected of me and in both pre-assessment and the main operation itself, I expected things to go at their pace and not how I wanted them to, I drank plenty of water before arriving at the Hospital and all the time (when I was allowed to) which meant passing the tests and irrigating the bladder was assured. I was still slightly put out that they managed to end up sticking a catheter in and one of the big ones too. If I never have another one it would be too soon.

In terms of how do I feel about it now – well – I am still taking in the fact that it is clear and I am not absolutely certain what that means. I mean it looked clear last time but they found atypia. But if it is clear then I think that I go onto a maintenance holding pattern. I am hoping that this is flexible cystoscopies but there is a nagging doubt in the back of my mind that thinks it may mean I have to continue to have these full versions for many years but with greater periods between each one.

My continued thanks to my family and friends both online and offline who continue to look out for me and send me best wishes and prayers.
I hope that there won’t be a Scar Wars VIII.

*A creation of Steve Kelley Inc. :-)

Bath and Bed

See if I can soothe away these aches and pains where they throw you around in the operating theatre.

All good fun but my back and groin area hurt as do my arms which they no doubt shoved somewhere. Where the cannula has come out looks a right mess too. Mind you, not as bad as the last time - at least the staff knew what they were doing and were pleasant and civil.

A good night's rest without the tourettes wittering of the guy in the bed adjacent to me tonight thank goodness.

Home

Tired, slightly sore, did I say tired :-)

However, after all of that, little sleep, catheterised (again) and delays getting home the upshot is that things look good inside Mr. Bladder and they still took biopsies and still pulled me around a lot. However, I am comforted by "We don't want to second guess the lab results but it looked clear" will certainly be something to hold onto until the out patients appointment in 2 or 3 weeks time.

Oh yes - and I'm tired - Scar Wars VII will explain all :-)

Another hot one

Another day likely to reach 27 C and the hospital will be like an oven. Hopefully they will have some fans around this time. It is at least air conditioned in the theatre and corridors.

Just got the MP3 player all loaded and I am now plugged into some music which is nice as that relaxes me.

Still not too bad although my blood pressure readings and heart rate are all up - what a surprise :-)!!!

I'd better go and do my packing and pretend that I want to go and get this done. At least the music is sorted out. I have a book that I can actually read without hurting my head and I just hope that I don't have to hang around there too long today / tomorrow.

Another Judgement Day

Arrives and I have got up early, had a shower, had my light breakfast and I am now on water up until 11 when I will head off for the Hospital for my 11:30 appointment.

A little churning in my stomach, a few nerves of course but not bad. This time tomorrow it will all be over and I then have to wait for the outcome. I might get a progress report based on the visual. I want to hear that everything looks alright of course. I'm not sure how I would feel if it were a recurrence, I'd have to take that and think about it.

I'm loading music to my MP3 and I have decided not to have any of the stuff I had when I went in the first and second times as when that happened I had cancer and of course I don't now. There are a series of songs that I associate with that time and whilst I like those songs they do make me feel quite strange these days. So searching for other sounds to listen to. Plenty of classical and less rock and roll.

It is just 3 hours away until I go in and I haven't packed my bag and I'm going to leave it so I have things to do in the next few hours. I'm going into my quiet, lock me away, don't talk to me mode right now and I lock myself down into myself and become quite monosyllabic in responses as I'm just not feeling like entering into a conversation. I'm sure that outwardly I will be pleasant enough but in reality I am just shutting myself down and keeping within myself.

Weighing in with the NHS debate

Interesting the debate over our NHS in the USA. It appears that, as in every argument, the lobbyists have been hard at work and fact and fiction abound. The report I just saw was meant to be representative and yet it portrayed those interviewed as just plain bonkers. I'm sure the editor felt that it was in our interests to see these poor confused Americans who had no real idea of what our system was really like and quoting spurious figures as facts about death rates. If they were true none of us would be left on our little island.

Sure the NHS has problems but no one needs to fund insurance and everyone can have treatment. There may be some issues with how it has evolved and inefficiencies and costs and budgets are all over the place, it doesn't mean that people die or that it is somehow third rate. What I'd suggest everyone does is look at the UK and other European systems and see how they work. Some of the French Hospitals are fantastic. The Scandinavian countries also have an incredible record in this area.

The argument shouldn't be about whether you want an NHS in the US it should be whether the way it provides equality for all can be used as a model. If you have ever read Steve Kelley's blog you will see that there are fundamental differences in the way healthcare is delivered and in the US there is more choice and things are just massively different. However, we both survived and we are both on different ways of being treated. None of us is saying which treatment is the best as the results are the same and despite my pointing out the issues that I have with the system, it doesn't mean, as some were stating on the TV that there are massive problems at a grass roots level.

Anyway, as I'm about to go into hospital today it was perhaps going to be on my mind. I'd just wish someone would deploy some facts to the US citizens so they had accurate information to base their decisions on. It appears that those who have most to lose are providing only one type of bullet and the opportunity to have a balanced argument cannot happen with only part of the story provided for the debate.

I suppose I ought to get to bed

It is after all 30 minutes past midnight. I just feel asleep downstairs and came up here after a nice meal out and a few (not many) drinks. Just about to turn in and I must be up early to have something to eat before 7:30 I can then get myself ready for my 11:30 appointment.

Feeling OK, quite mellow about things really. I'm quite impressed that I am quite so chilled about it this time. I just hope that it lasts and I look forward to getting this out of the way as soon as possible.

Good night.

An evening out to distract me

Just what I need a good evening out with the family and celebrating Ls 16th birthday. I will eat well, have a few drinks, sleep well and be ready for tomorrow. I am also distracting myself loading up my MP3 player and pottering around getting ready tomorrow.

Not too worried about it really this time. I know the score, I've done it before. Worrying isn't going to help me and I'm back into the right frame of mind.

It looks like all of the BC warriors are going to find out their fate in the next few weeks. HK is clear - brilliant news and has three low dose BCGs to contend with. Steve is due up for his scope poke and peek in about 3 weeks time.

Anyway, it looks as if we will be out of here in 20 minutes or so and I had better go and get ready - or as ready as I will ever be. The Bank of Dad and my credit cards are all I need :-)