The calm after the storm

At least I hope it is.

During the night, it must have been about 2, I went to the toilet and there was a large clot and some blood but end of stream. This morning, well it looks clear, possibly some traces, but otherwise OK.

Today is going to be a take it easy day. So far, so good and I hope that it stays that way. I just need to rest and drink plenty of liquids and hope that whatever it was sorts itself out. I can actually feel some palpitations and a very slight soreness which I need to make sure are no more than that or else I'll be taking myself off to A&E pretty smartish.

This has happened before so I am not quite in panic mode but it did get me close yesterday.

I'll be seeing the Consultant the week after next and so I will mention it. However, I know she has always said to expect this. Perhaps I need to be a bit more patient and not to have expected to get back up to the level of exercise I was doing earlier on in the year? I certainly didn't jump on the cross trainer this morning :-)

Well there is a start - at least I got my sense of humour back - they can't take that away from you!

Sleepless Night

I don't think it is worry that is keeping me awake. I've pretty much come to terms with the fact that this is what I should expect given that they cut a number of slices out of my bladder.

Logic and common sense are taking over but of course they make your brain whir and with that keep me awake. It has gone 1 and I've been awake for a couple of hours. I will have another go at getting some sleep in a minute.

What a day!

Revenge of the Black Dog

Well I had written the last blog entry and all seemed OK.

Went to the toilet and a full stream of blood and bits came out non stop, it was horrendous and catapulted me back to the early days. There was blood everywhere and the shock of it rocked me. There were lots of bits of all sizes and dark blood not traces this time. I know that a little blood goes a long way when it is watered down but this looked just like how it had when I first got the symptoms. Ugh!

To say I was in pieces might be an understatement. It was pretty horrible and I couldn't believe it, it was as if the last 15 months hadn't happened. It took quite a while to gather myself together and go back down stairs as we were just about to watch the Rugby World Cup Final and wife and daughters were sitting there. I guess my eyes were a bit puffy and red when I got downstairs and no doubt I looked as white as a sheet - I do when I get a shock or feel ill.

C noticed straight away and I told her privately what had happened. I drunk a couple of pints of water and watched the game. So far everything is clear. I have resolved just to take things very easy for the next few days. I can't imagine that it is anything serious now, given that there has been no repetition and I have been a number of times.

How fragile my mind is though, I was in blind terror when I saw this again. I can't even begin to explain to you what it looks like or feels like.

The Black Dog shook me about and even now I catch myself hesitating to go to the toilet and feel my heart beating a little faster than it should and the tears are subsiding but that really wasn't a great couple of hours to live through.

Unfortunately your brain jumps to conclusions, if it had continued, how long do I wait before taking myself down to A&E etc.

I am off to bed now - I hope I can sleep. Not surprisingly I will not be exercising tomorrow or for a few days as I take things easy. I'll talk to the consultant, my guess is that it isn't particularly unusual and lets face it - I had this sort of thing (on a very much smaller scale than this) before. Maybe they took larger biopsies to be absolutely sure?

Whatever, it brought me back to earth with one hell of a bump and I haven't been this upset for perhaps a year or more. I'm obviously not as mentally strong as I thought I was, I must be aware of that going forward. I still feel a little tearful but nowhere near as bad at the moment. I can feel the slight sting of the blood still but it isn't painful.

Well, lets see how I fare overnight. I really wasn't expecting this sort of day or the shock of that. Take it easy, plenty of drinking and perhaps I can get back on course.

And another

After a few more clears - another one.

I don't think anything to worry about particularly as this has happened before. It just turns you over seeing the sort of thing tat used to be frequent and concerning - again.

Taking it as easy as I can at the moment to make sure that I don't aggravate it.

Spoke too soon

Another scab came flying out with associated debris and blood. It is weird and and disturbing all at the same time. Again, it sort of shook me for a few seconds but then the stream went back to normal and so all is OK. Drinking a lot of fluid today and taking it easy.

I am up to 20 minutes exercise a day - could it be that? I doubt it, just nature taking its course. If I was bleeding then I'd definitely stop doing anything. That happened last year and I took things easy for a day or two and was fine.

Anyway - it is the weekend and I don't feel ill or anything - it is just something to monitor I suppose.

Well that brought me back to earth with a shock

I had two "OMG" moments last night (OMG Oh My God!!)

I went to the toilet and it was strange but I suddenly felt that something had happened and I looked down and there was a bit of debris in the pan and then a small trickle of blood diluted.

Now I "should" know what this is - how many times have I been in Hospital? But the brain doesn't remember that first off does it? Because of the association with what blood actually meant prior to diagnosis - your brain goes there. Quite how it made the leap to think that I could possibly have tumours in my bladder where 18 days earlier all was clear is not certain.

I rationalised this afterwards. The next time I went was horrible as three huge chunks of debris (probably scabs) came out along with lots of little bits and again a diluted rusty coloured urine. This is , believe me, enough to make you recoil in horror.

Of course these are just the scabs from the biopsies coming away and so they are only signs of the bladder wall healing itself. I imagine my bladder has probably had enough of being cut, scraped and generally subjected to pretty awful chemical attacks - bless it!

So it was quite a relief, last night and this morning to have no debris or any colouration in my urine.

What a relief even though I know what this should be.

Too Young to Die

That's a strange thing to say. You hear it a lot. I often want to ask what is the right age then?

English is a peculiar language.

Outlook

I'm still really positive about everything and still feeling on top of it. I need to get a bit more structure back in to every day life and I need to work on work / life balance as I haven't got that right yet. I am actually taking time out to do more things and get out more. I'm off to London to meet some old friends tonight and that combined with a meeting just before that will allow me to get a bit of business done before having a great time out with my mates.

Life gets back to normal but it takes a while to get back into it that's all.

Exercise

Back up to 20 minutes a day now and that stretched my muscles around my stomach a bit. I can feel everything beginning to get tightened up already which is great. It is amazing how little it takes to get you feeling better.

Now to get my diet under control and I can start to improve on this.

I'm reckoning that I can be somewhere around my fighting weight by Christmas if I lose my weight gradually. I must have lost a few kilos already this past 2 weeks. I'm sure I'll have to have a set of treatments before then as well. They may break some of the momentum for me but I hope not too much.

The Ecess of Youth

Well not quite youth but I did have a real blow out meal this evening

Cream os Asparagus soup, Duck in a Cherry sauce (OK boiled potatoes and veg) but then a rather innocent looking pastry but afterwards followed by cheeses that have enough fat in them to turn your arteries into rock!

That is it for a few weeks - I have another one of these meals in a few weeks. However, I hope to have worked off this lot of excess by then!

It is all one big Merry go Round - you do a lot of good things for a few weeks and go and wipe it all out with a massive meal :-) I'm sure it isn't really like that but there needs to be some balance in all of this. I'm just not sure how you balance enjoying yourself with the other need of making sure you are living healthily.

Balance is the answer. Just what is the balance though?

Back to exercising

I felt confident enough today to get back onto the cross trainer and give it 10 minutes on a steady programme. It was just enough to get me back to a regime of exercise and to support proper eating.

I haven't started to go back to doing all of the measurements yet as today is just about the last day I am out and eating a big dinner - 4 courses!! So I thought, perhaps it is better that I start taking measurements of progress next week when I am clear of the excesses of today.

I've gone back to being careful with what I eat, I've not gone overboard this time and I am not going to be doing more than a weekly check as it just doesn't make sense to get paranoid about a daily fluctuation. I am again cutting down on bread intake and having a lot of soup which is made at weekends and used up during the week. I am also making sure I get a proper balance and as my GP told me to ensure that I lose weight gradually not in huge drops.

I feel quite good considering the layoff I've had from exercising. I hope that continues.

Amusing Stories out of Sad ones

At the weekend we went to the Christening of a surviving twin and I took the family to the grave side - very sad.

But it was really a double celebration as besides the Christening one of their family were celebrating their 90th birthday and were with a group of elderly men and women. They asked to see the grave and one of the parents, quite bravely I think said to this little party, "This way, it is a short cut to the grave yard" at which point one of the octagenerians said "That's the last thing I want to hear at my age".

Well I thought it was funny but I do have a somewhat warped sense of humour.

You can read into things what you want

But here was a very strange thing. I got hold of some Orange Advocacy wrist bands which have Bladder Cancer Awareness on them. Well I try and wear mine occasionally - at one time I wore it quite a lot. Well it broke yesterday and I threw it in the bin.

I gave all the rest away so I don't have one now. Perhaps that will be a good ting and I won't remind myself or perhaps I don't need to wear a badge anymore. Or perhaps, I just read to much into these things and it broke because it was time for it to break :-)

Give me a good conspiracy theory any day - I love them.

Still uncomfortable

It has been two weeks since the op and I am still uncomfortable. I don't remember being this bad for this long last time. Perhaps they pulled me about a lot more to make doubly sure?

I suppose I ought to start blaming my age as well :-) Well I am 50. When I was a kid that was well - almost like dinosaur stuff. Of course now I am here it is of course a wonder quite where all those 50 years went to!

Why do simple things still annoy me?

I find some things really annoy me. How about the News. Yesterday, nothing else happened in the world apart from England won the rugby against France. There was obviously so little news of interest that our newspapers and TV screens were crowded out with this world shattering event.

Given that only about 25% of the world even know what Rugby is anyway, it just seemed utterly crazy that this merited front page news. Somewhere we must have lost our way if the talk of the day is about a sport, or some people of notoriety (I don't use the word celebrity as that surely is a person who is celebrated), and some Minor B list actors all trying to dance can also grab this morning's breakfast time news.

Dumbing down I can understand but why has the BBC News turned into Hello Magazine?

Of course, maybe it is just me?

A Pleasant Sunday

We went to see my Friend's son christened. This is the surviving twin from the tragic death of the other one in July. I took the family to see the grave - very sad and then we went on to the Christening and a little party afterwards. It was a very nice affair and was enjoyable and another stepping stone for them. He has been told that he is now Cancer Free and they won't need to see him for another year. I think after that - he gets to be discharged - excellent, they could do with some good news.

It was a lovely autumn day, the trees are turning all sorts of great colours and leaves are dropping already. I don't suppose I was taking too much of that sort of scenery in last year.

I need to get out more often I've decided. I've used the house and the fact that I can work from home as a barrier and I need to change things around to force me to break any routines that I have gotten into.

Dreams and Demons

The dreams and the demons appear to have gone away and the Black Dog hasn't visited for quite a while either.

Work has taken a big part in my life this past few weeks and I am really getting "stuck into" getting things moving.

I still have doubts and a few worries but these are nothing like I used to have a year ago. These are more everyday things now and aren't important in the overall scheme of things.

I like to tell people that now when they complain over something trivial. A standard answer is "Well it isn't life threatening is it?" or when someone was seated incorrectly at a recent meal "Did it make the food taste strange then?" It never fails to surprise me how trivial we can all be sometimes.

I'm working out quite how to go forward balancing life and work. It is all a bit new to me and so I reckon, I just need to work at it.

Scar Wars V

Scar Wars V

Scar Wars Episode 5

(Cue Music)
In a Galaxy far, far away.
Our hero has fled from the hands of BCG and Bad Catheter

and once more finds himself trapped in the NHS Death Star.

The Bed Blockers impede the patient army in their quest to attain getitoverwith.

Meanwhile, the remains of the trashed cancer cells are hunted down and taken out in operation Och and Shaw.

Insurgents are hunted down by the BCG expeditionary forces of the NHS Trust’s coalition.

Our Hero faces his greatest challenge, can he overcome the mutating cells once and for all?

Read on if you dare......

No beds – and that on a Monday morning of all things. The waiting – of which I am quite used to wasn’t so bad as there weren’t that many to be admitted. I didn’t really get much time to go through my listening to music ritual as it would have helped me when the next bit of information hit me – that they would be talking me straight into Theatre. That is pretty nerve wracking in itself as you are walked past all the Theatres and prep rooms and straight into the recovery where people in various stages of recovery are coming around from their operations.

I am led to a cubicle to get changed and after slipping into something a little more Chic – well an operating gown and climbing onto the bed – I am check listed – having previously been consented at lunchtime by my Consultant herself. We go through the usual and my bag is tagged as am I with my ID. We go through the checklist again when they come to get me for the Operation and I am in a room with a lot of people this time. It starts with the Prep nurses, then the Anaesthetist and then another and another – this time we actually have quite a good laugh as the Anaesthetist and I have been joking about blunt Cannulas and also going off to Hawaii whilst I am under. The Cannula proves to be a good one – the best yet and I give 10 out of 10 for it as it hurts (of course) but doesn’t make me almost pass out like some have done in the past. We discuss my rather high pulse rate and I explain that whilst I like them – I don’t really find going on for Operations something that I look forward to in a stress free way.

The General Anaesthetic goes in and I get my Oxygen mask and get to breathe deeply. I feel the icy cold threads running up my arm and as the GA reaches towards my shoulder, I lose consciousness.

Coming around is easy this time, no fighting I am told and I get a nice ice cold drink of water through a straw. I don’t feel the need to pee (I have done on every other occasion) nor do I feel sore or pain in anyway. Within minutes of my recovery I am whisked off to the ward were mercifully I am given my own room. I detest being in a room of other people – that’s the trouble with Hospitals – they’re full of sick people, often much worse off than me (for which I am grateful) but I very rarely relax in these situations. So my own room is a luxury.

My consultant pops her head in and tells me that she can see nothing in the bladder, there are some pink marks which she thinks are to do with reactions to the BCG rather than anything sinister. She has taken biopsies and will see me when the results are back. She seems very chirpy and I am very happy to hear the news.

I am brought a meal which turns out to be quite a hot curry for a Hospital anyway. I am drinking jugs of water which I am going through as if there is some sort of water shortage coming. I know that if I can pee twice and that the Nurses are happy I can go home.

My wife turns up and I manage to go to the toilet and have a pee – nurse is impressed and so am I as it only hurt a little and didn’t sting as much as it might have done. I do a whole jug full – and only the tiniest traces of minor blood clots – no red urine at all – that is a massive relief. I expect to see more blood but realise that there has been no work done this time, there aren’t any areas that require it and it is only the biopsies that are causing any bleeding at all.

Shortly afterwards I produce yet another jug of pee – at this rate – I tell the nurse – I could be peeing for England at the next Olympics. They wont let me home and they say I’ll have to stay overnight – I protest weakly as they know best and I am in a room on my own so can sleep and not get disturbed or disturb others.

After two more amazing jugs full of pee – the Nurse behind the Station – which is just outside of my door – states – shame – if you had done that earlier you could have gone home. I smile to myself and resign myself to a night at the Hospital. I no longer need to pee into jugs and can go directly. As I have a private loo as well this helps as I am up and down quite a few times during the night peeing. Apparently the best way to recover from surgery in the bladder is to drink a lot and I was determined to do just that and it works.

After a great shower in the early morning – great because at the crack of sparrows the Nurse takes my readings and then removes the Cannula (thank goodness I can’t stand these things) and I can just stand in the shower and wake up and feel refreshed.

The Registrar and entourage make their rounds quite early. I am told that I can go home later and that all looks fine except that they saw a few red areas in the bladder? I let this go, this is the guy who told me about the biopsies last time and perhaps having a catheter and all that. I decide that the Registrar works on worst case scenarios (as I suppose you should), my Consultant talks from experience and hasn’t been wrong so far. She was though surprised how well I responded to my first couple of operations and she was very thorough about the grading of the Cancer because of that – I feel very safe in her care.

Breakfast arrives and with it, the Ward Sister (or whatever they call them) noticing that I am dressed and ready to go explains that they are Bed Blocking and that they will let me go about 11 a.m. I am somewhat disappointed as I could easily have gone then but the Urology ward want urology patients and not some other sort. So I sit by my bed and listen to MP3s and doze until I am called on to leave.

I call a friend and let the departure lunge people know and head off for the car park so she can pick me up. After a few minutes I realise that I have lost my bearings and am walking the wrong way so I retrace my steps and arrive outside waiting just a few moments until I am picked up and whisked off home.

I arrive home and put my feet up for the rest of the day. Drinking plenty of liquids I do indulge myself with a slightly stronger coffee than they serve at Hospital – they make coffee like my parents used to in the 60s and 70s with half milk half water – I really dislike my coffee like that.

It is too early to say whether I’ll need to go back into Hospital for an Operation. The outpatient appointment isn’t until the 1st November which leads me to believe that I will again get a further downgrading as they do tend to whisk you back in pretty quickly if you aren’t well. So working on that premise, I expect to hear that there is no more cancer, or precancerous areas in the bladder.

I am trying not to build up my hopes too much but, in reality, I am excited about the possibility of being able to have beaten this and to be in a position to be closely monitored and whilst the BCGs aren’t particularly pleasant and make most people you talk to squirm at the very thought of them, you must realise that they are giving me the opportunity to be cancer free, to live and to eventually be finished with it all.

The road ahead may be long but it just got a lot easier to live with and to navigate. The tarmac is smooth and the service stations are spaced out equally, life can fall back into a pattern and more importantly than that – I can get some control back into my life. Perhaps I may be able to draw a line under the hard part of the journey and review that and stick it in my “experience” file. A new road heading off into the west, sunshine, magnificent sunsets, new experiences and more adventures are waiting up the road for me, who knows what they will bring but, I have to be thankful that I can do any of these things as at all given the last 15 months.

Thanks for taking the journey with me so far. Are you ready for adventure? Let’s see what Scar Wars VI holds for us.

Taking a long time to repair

I was considering that I am still not right. Not as I was before the diagnosis, not as strong, not as quick and I have little stamina.

Again, it comes down to how serious it really was I suppose. I'd taken it seriously but perhaps I didn't foresee this particular result. By serious, you probably know if you have followed this that part of the strategy of fighting this was almost to ignore it, or believe it was happening to someone else. So what I am struggling to say is that I took it seriously but part of the defence mechanism I put up was not to. Still doesn't make sense does it :-) Anyway - it appears now more serious than it did then! I think perhaps I got it with that statement.

I was up a lot last night with what can only be called uncomfortable insides. My urethra aches and I'm certain, as I said yesterday, that this is like a bruise coming out or the internal bits all rearranging themselves after being straightened out by the rigid cystoscope.

The upshot is that I feel dreadfully tired today and not particularly upbeat at all. I need to go down stairs and eat something now but even after a shower I am feeling drained physically. I need to put some focus back into exercise, eating and building up my strength. Of course I know that in a month's time I'm probably going to be wiped out for another 3 weeks with the BCG treatments. Ho hum :-)

Drat, Drat & Double Drat

My appointment has come through and it isn't until 1st November - that is beyond 4 weeks.

I suppose if it is that late (and not even in the usual Hospital but elsewhere) that it isn't going to be too much of a problem and more likely a formality type appointment. The one thing that I am sure of is that I will end up with a set of three BCGs before Christmas. I think that it is OK as long as they don't start me on the course until the 12th November as I have a meeting on the 5th that I really wanted to attend. Hey Ho!

Funny - being disappointed not to go into a Hospital? I must be "losing it" somewhere :-)

At least I have a date to go in and see them and haven't had to chase this time.

Not as bad as I thought I would be

Only a little bit sore and you don't really want to know where that is. I remember this last time - it is like the bruises coming out from a wound elsewhere on your body but where this is well - how can I put it other than - the wedding tackle aches :-)

Scratching it doesn't help as it is inside - it is uncomfortable rather than painful.

Back Driving today

Well that would have been had I not spent 1 hour in a traffic jam on the M25 that is. It surprises me how much a 100 mile round trip actually took out of me today. I feel quite tired and a little sore.

I must remember to get myself an automatic car next time - having to sit in traffic in town and on the motorway really took it out of me creeping along.

Anyway, I am happy to be back driving again and getting about a bit more - I hope I am not too sore tomorrow morning.

The plot thickens

At work that is. The exciting stage is almost upon us and the business is ready to take off, new challenges are rearing their head every day and what is interesting is the speed at which the business is ready to go at.

I'm pretty much up for this - got to take it a little easy for a few more days but other than that, I can get myself really engrossed in this as it launches. I can see it taking a lot of my time in the next few months but once the back is broken on this, we can get it moving properly.

The Level of Concern

About me is touching. really it is. I went to a Lodge meeting tonight and just about everyone was asking after my health and asking how I was and what was going on.

It was really nice and it was touching that so many people are genuinely interested and feel strongly about my health.

What was very annoying was that one of our members, a Lollipop man (a person who assists school children to cross the road safely) was beaten up by a disgruntled driver - this in front of the school and the children he was helping across the road.

In this instance - for the trauma that person caused not only to our friend but to the children outside the school the culprit should be locked away for years. We know that isn't going to happen as the EU and the bleeding Liberals have decided that people like this are in fact having their civil liberties violated by being found guilty. The Lunatics have taken over the Asylum comes to mind.

I think they injected me with a little bit of right wing last week. Frankly I hope the guy gets 5 years or more and I don't care whether he is a family man and had his kids in the car. This just isn't acceptable behaviour in a civilised country and to beat up a 70 year old man in front of a load of kids is outrageous. Should we bring back stoning? Yes - I'd throw the first one!

Mmm

So if you haven't got bladder cancer anymore but you are being treated for it (to stop it returning) have you still got bladder cancer or have you got something else?

are you a cancer survivor or are you in a precancerous state?

It is all very confusing n'est pas?

What are they treating me for?

I shall have to check this out as I believe the term remission is the proper one for something that is no longer a threat or has gone away. but has the potential to come back which unfortunately this does.

Still feeling very good

I have been feeling very good about things even before visiting Hospital - goodness me, can it really be a week since I came out of there! Where does the time go?

I was trying to examine why I was quite so upbeat given that this was before I went into Hospital and before I knew that things were looking good and yet even now I don't have the bit of paper that says all is OK and I am still upbeat.

I really can't put it down to one thing. i just woke up one morning and decided to get on with it. I'd had all the problems and gone through all the traumas and it occurred to me that just getting on with it, is what I needed to do.

This is of course different to someone telling me that to my face. The last thing anyone actually needs is some smart Alec giving you the "benefit" of their advice like "Pull yourself together" "Are you cured?" (My particular favourite is that one) "Live life one day at a time" What the hell does that mean? "There are lots of people worse off than you are" - that is true but this things is hurting me not them and so on. You really need to know how to say these sorts of things to cancer patients as we have feelings too :-)

So - it is OK for me to tell myself to buck my ideas up but not you or anyone else to tell me. Once decided on a course of "what is the worst that can happen" you do have to then be aware of trampling all over everyone around you who isn't in tune with you.

But I am pleasantly surprised that I am still very upbeat about things and still not letting anything phase me. Perhaps I have the Black Dog repellent on or something?

Internet Problems - Again

A plague on you Virgin Media!

At least I am so used to it these days that I can set a small action plan in motion to get back on line. I left a Little programme running last night that polled the servers every few seconds so it probably hounded the daylights out of them. After a bit of messing around today - I have managed to sort out and get the internet and e-mails back on.

Last night was good although I had a bit of a panic attack in the car when I got squeezed in. I had to sit up in the front. Not sure what all that was about but it was quite scary. I do get a bit of claustrophobia so perhaps that or just feeling cramped with the seat belt tight around me. Don't know. I was quite breathless when I got and and was able to move again - I got into the front seat and I was fine! Strange.

A Bad Night

My stomach area was hurting badly last night. I reckon that was because I spent most of the day on my backside doing nothing! I intend not to do that today :-)

I was up and down for about an hour before things finally settled down around about 4:30. Just a little reminder - if any were needed - that perhaps I ought to be thinking a little more about my recuperation by doing some exercise and not taking what amounted to close to bed rest.

With that said - I need to get myself up to the shops now and so I should get some exercise now.

Later today I am being driven to a meeting with some friends of mine which will be good. Looking forward to getting out and perhaps even having a little celebratory falling down juice too.

Busy Sunday

Up early to watch the Grand Prix and there was motor sport on all day so I had a day being a couch potato but I did actually do a lot - I packaged up some 150 or more envelopes with loads of flyers and agendas, I e-mailed stuff out to close to 100 other people, I wrote a positioning paper for work (2 in fact) and completed a strategy mind map.

Just a typical Sunday really - so typical that I am writing this blog at 1 a.m. on Monday morning - what do I think I am doing!!

At least I get a chance to go out with some friends later on today.

Graft

Saturday has just been a case of grafting through all the rubbish on my desk and in my Office.

There really isn't an easy way around this I just have to keep at it until the pile of paper diminishes and more of my desktop comes into view.

Gradually the area around me is becoming clearer and I will at last be able to spread out a bit more - I was beginning to get very cramped for space.

I do need to stop now though as I have been sitting crooked and can feel my stomach muscles giving me some jip!

Easy to forget that I still need to take it easy.

So the weekend

What to do? I should be relaxing but I have a batch of things that need doing and so I will sit in my office and get that sorted and hopefully clear this backlog of things I have been reluctant to tackle.

I say reluctant but actually, I just couldn't be arsed to do it. I reckoned that the best thing to do was to be able to concentrate on some of these things later as well as I wouldn't have given them my best attention.

So now - all those things are in front of me and now need to be done so I''m setting down to do them and clear them out of the way.

I've decided that I need to relinquish more of the things I do outside of home and work and I am going to be quite active in getting rid of some of the jobs I do and events I organise as frankly, they eat into my time too much. It is about time someone else did them and that I stepped aside - in some cases I have been sorting these things out for 20 years or more. Time for a change.

Facing up to your demons

I got to reflecting today about one of the strange things about these past experiences. That was actually going through with some of these procedures and facing them. You know you have to and so you do them but I never thought I'd be able to.

I'm thinking of the sheer fright and stress prior to these things. It has eased up a lot since hypnotherapy and since I came to terms with it. I was just remembering the utter horror of the X-Ray - some may think that strange but it wasn't so much the X-Ray and the stuff they pump into you it was the laxatives that cleaned you out prior to that - I don't think I have ever felt so miserable and I hadn't long been out of Hospital either so it was a double blow.

Could I do it now? Sure if I had to. I'd probably whinge a bit but I know what the Consultant would say and so I'd do it.

The whole area around what you have to do is the key. These things are done to save you and cure you so you go through them and yet you'd rather not. Before all of this I hated hospitals and operations (who actually likes them?) and now I am resigned to having to go in regularly and to suffer whatever it takes to make me well again. I never thought I'd say that either but that is true.

Finally I never thought I could lie down while someone shoved a catheter into me (no local anaesthetic) and instill BCG into me. However, I have done and will need to continue to do that for many years to come. It is all about what you get used to and knowing that this is saving your life.

That in itself is enough to make you do things that you never thought you could do, go through stuff that fills you with horror and to tolerate far more than you would normally. You know that if you don't it can actually mean your life. I think the stakes are high enough to make you understand why you soon come to terms with things.

I must stop and think

Before I get quite so stressed out that people are not meeting my standards and have my outlook on life.

I would repeat this a 1000 times but you know that I would cheat and just do a cut and paste!

Today

I have sat at this damn set of computers all day now and I really should have been taking things easy!

Such is the buzz I have at the moment that I have totally forgotten that I shouldn't be working until next Tuesday at the earliest.

I am going to desert my post and go downstairs and put my feet up now like I should have done for most of the day.

No wonder people keep telling me to take it easy. the trouble is you don't realise you are over doing it until after you have over done it.

The importance of being me

Yep strange title.

I am strangely compelled to write a note about how important it is to be yourself and to not be anything other than that.

It is easy to change and to put on an act or to become embittered or aloof about having cancer or anything life threatening. Because a lot of people don't understand doesn't make them stupid or somehow of inferior intellect. You mustn't treat them like that and you need to be patient and to explain it (no matter how many times you have to do that).

It is the most important thing to those of us who suffer from such things, it "rules" and "governs" our lives and we don't understand why no one else knows that - just look at my early blogs about why no one dares mention the "C" word.

I am hoping that through the last 15 months I really was myself and I didn't shun friends or take out any anger on them or be impatient or sarcastic.

Why? Well I'd have hated to have given anyone I know a hard time. I know I upset a few people but more from being frank and honest about what was going on but I don't think I got anything other than that.

It will be good to be able to go back to answering the question "How are you?" with an honest - I'm fine.

I am feeling so much better today. I may be battered and bruised and still have trouble bending down and getting around but I feel absolutely brilliant.

Roll on the 23rd October when I can draw a line under this lot, stop the Roller Coaster and get onto one of the less wild rides for the next stage.

Recovery and the road to it

Well today was strange - I was sleeping in when I got a call from my Mum at the crack of Sparrows - "Have I woken you?" I lied and said I was awake already.

Thereafter getting up was somewhat amusing as I ached just about anywhere it is possible to ache. Having got up I sat down at the PCs and duly knocked out a few hours of e-mails and bits and then I had to sort out a PC problem for a friend. I felt that I should have a sit down which I did after lunch and then sat and watched some DVDs purchased for just this eventuality. Half way through Lawrence of Arabia, I had a call from my friend who sounded very upbeat - which pleased me as he sounded down in the dumps last week.

We chatted about lots of things and a lot about my recent operation and the hopeful results. We both have our problems with the Black Dog turning up every now and then but, as I reported last week, I am feeling very good about myself, my job, my condition and just about everything else at the moment. How long can that last?

Well to answer my own question, at least three weeks and I hope longer than that.

I am now really getting to grips with my job and things that I set in motion two or three months ago are coming to fruition. Some of the long term plans I made are also working out well.

I just hope that I am not like the Ensign you used to see on Star Trek - the one you hadn't seen before - sent on an away mission and stunned by aliens :-)

I am 95% certain that my consultant's words were meant to say - clear - let's go to the next stage. That will be something to hear. Not sure how I'll react to it though. Considering that the last lot was two small precancerous areas that were said to be suspicious and that this time the areas looked pink but are probably a reaction to the BCG are - I am sure - the right sort of words without being completely committal before the lab results.

This isn't the end of the road it just means there is a new fork in it and the way gets easier and a little more pleasant. Maintenance therapy is there to now "prevent" the cancer returning not to remove it. It may seem a strange slant on things but for the present, I don't have cancer. These results should re-enforce that prognosis. Maintenance would then kick in which will last many years but I'll be monitored and receive ongoing treatment which will eventually lead to being clear for a long enough period to know that it wont come back.

I now have to go and do my part of the deal and get myself back into shape. I probably wont get started until next week when I am feeling a little less sore but I must get back to a proper regime of exercise, diet and life style to maintain a healthy body and to ensure that I get fit again ready for the next lot of BCG treatment which could start as early as November (about the same time as last year!).

Anyway - I am very upbeat and I must go and get some rest. I am prone to overdoing things when I should be recuperating.

So How Was It?

Bed shortage - nothing new there but eventually after 3 hours waiting I was taken straight to surgery. That was actually quite stressful as I hadn't been able to relax and do my breathing and repeat my hypnotheapy words to myself and get myself ready. So Blood Pressure was up, Pulse was racing and I did say why I thought that it was so. After a short while it all came back to on the high side of normal.

In the preparation room I was pleasantly surprised to be able to award 10 out of 10 to the Anaesthetist. we made a deal that I'd provide a juicy vein and that they would find a sharp cannula. They were very good - I don't have a larger bruise (unlike the rest of my body which feels like one big bruise). We also had an arrangement that for my Operation (yes they call it an Operation not a procedure) I'd be whisked off to Hawaii in less than 7 seconds.

I did feel very "heady" this time when I came to and I was back on the ward and felt quite well after that.

No blood (a few bits) when urinating was a marked improvement and I was disappointed that I had to stay overnight.

A three week wait now until the results are known. That is going to be difficult as I'd like to start shouting about it now but - if it isn't in writing then it isn't confirmed. Be good if it was though wouldn't it? Brilliant

And so to bed - thanks Sam

Yes off to bed now.

Had an interesting afternoon snoozing in front of the telly and watching - or rather not - some DVDs I wanted to get around to watching which I will have to watch as I dozed off during most of them. I've been taking some Nurofen and Paracetamol and some throat tablets.

They seem to have done quite a number on me and I ache just about everywhere. My legs really hurt - perhaps they were put in stirrups and my back, neck and arms hurt but they are nothing to what my lower abdomen is feeling. That does feel like they have stirred me around a lot.

However, given the suggested good news, I think I will take the pain as it looks like there may be some gain to be had here.

Ever hopeful I am off to bed and hope that I feel a lot better in the morning. These General Anaesthetics really do take it out on you as well and I am coughing too - which is normal. The trouble is coughing hurts my already sore throat and hurts my chest.

Good to be back home though.

Oh yes - and I won an album I have been after for ages on eBay - cool.

Back Home

Shaken and Stirred.

Will post more later as I NEED sleep. All appears to have gone very well. They could see noting in there except for a pink patch or if you listen to the registrar some red spots! I'll take the Pink Patch from the Consultant at the moment.

They think that it is reaction to the BCG not anything else.

I'll know in three weeks time.

On that rather splendid news - I shall take my leave of you and totter back downstairs for a coffee and a snooze in my chair.

2 hours to go

And the countdown is well and truly on. I had a good night's sleep and got up at 6 for a light breakfast and a coffee. I packed down two large glasses of water and I am allowed to drink (although I will only sip) water up until the time I go in.

I'm surprised that I am quite as calm about this as I am. Sure, there is a little apprehension, I don't know anyone who actually enjoys the experience after all.

I managed to sleep after breakfast - had the strangest dream about the cruise we had been on (or part of it). I've woken, had a shower and I'm about to upload some MP3s to my player to take in with me. Going through my head is the Antony & the Johnsons track that was playing just before the first operation - not the brightest of tracks but one that is now connected to the whole experience.

So 15 months (well it will be tomorrow) since discovering this I'll be having my 4th General Anaesthetic and 3rd set of biopsies. So far (touches wood) each has shown an improvement in fortune and so I am quietly confident that this will continue that trend and things will get better.

I am also convinced that this will be a change in emphasis this time and that I can get back to running my life and not having it run for me. Sure there will be deadlines and milestones for this as treatments and peek & Poke sessions will be needed and followed.

I am going to get this over and done with now and I feel better than I did last week going for pre-assessment. The back of my wrist is beginning to twinge a bit as I know the Cannula is going in there but other than that and I can feel some anxiety, I'm OK - I know the drill now, I know how it works, what is expected of me and what will happen (so there is no need to worry about what they are going to do). I know to ask for my water when I wake and to take it easy so as not to pass out like the first time :-)

Curiously I can feel the slight churn in my stomach but that will pass and now it is 1 1/2 hours before I go in.

Fingers crossed that they find nothing this time. If that is so, then we can crack open the "Internet champagne" - if not - it may take some getting used to, but I'll have to re-plan accordingly.

The art of distraction

Going away for the weekend was useful and has distracted me from going in tomorrow. I plan to try and be as busy as I can be tomorrow morning before going in. I'm getting better at actually going in these days and I hope that I'll sleep tonight - never did before. I hope to do something constructive rather than playing endless games of Tetris or solitaire whilst waiting.

No doubt I'll be my quiet self tomorrow avoiding any eye contact and plugged in to my MP3 player.

I had a good weekend albeit the M25 was up to its tricks which delayed getting to the Hotel until late.

The one thing that strikes me is how tired I was when I got back, further proof of the general lack of stamina I have been complaining about.

Getting ready

To go away for the weekend with a few buddies. We did this a couple of years ago and had an interesting few evenings at a well known seaside resort. Of course, we are getting a little old to go charging around and clubbing.

However, it will be very therapeutic for me as I am with a very old friend and we will get some quality time together and chat about lots of things I'm sure.

Anyway, as usual for the UK will have to pack for sun or tropical storms so I'll be taking a rather large suitcase covering either eventuality

The Art of Catching Lobsters

If you ever get the chance to watch this film - do so. http://www.cornwallfilm.com/Article80.htm - it premiered this evening and I was gripped as soon as I started watching it. the "emotional baggage" that goes with cancer isn't all about yourself. The people around you, friends and family and more so your partner and your children go through a life changing event themselves.

You know that they are going through it but you can only watch and if you are rubbish at saying things (like I am) you don't let on you just beat yourself up that you - through your thoughtless actions of getting cancer - have upset everyone nearest and dearest to you. This IS what it feels like and you get a guilt complex about that too. Such is the grip of a nasty disease that not only are you fighting to get well you are also fighting the fact that you are making other people's lives a misery. That is how you feel - I don't think that is the reality.

I so have to choke back the tears when I see my daughter's first photography project around cancer and smoking - set in grainy black and white and half - way through the words "My Dad has Cancer" - there - I'm having trouble writing it.

The film deals with the affect a stroke followed by cancer has on the family and the aftermath of the terminal nature of the disease. It is heart wrenching stuff and, as you would expect, evokes the sort of response these films normally do until you realise that it was the wife who made this film and bares her soul for us to see the pain and solitude of the situation. Time heals all someone said. I just enjoyed the honesty of the film and as you can imagine I was hit many times over with the fears that we all with cancer feel in our hearts and minds. See it if you can.

Now - where's the Kleenex?

Sense of Humour needed

It is difficult to make a blog "sound" the way you meant it to. For example the last one was some of my sense of humour which is oblique to say the least.

:-) You can prefix or suffix stuff with a smiley I suppose :-) either that or I need to word things a little more carefully and not as they spill out of my head and onto the blog.

Anyone who knows me can understand that some of the stuff I can come out with can take a while for everyone to get and so please do read this blog with the realisation that not all of it is serious. In fact, the best thing you can have when you have any sort of ailment is to combat it with humour if you can.

Wow - Magic Day

Fantastic - massive progress in where I am heading and a big leap forward in my attitude. I am so confident and so assured and I feel really good about myself.

I'm flying at the moment and I'm in demand. I'm useful and I'm helping people and I am doing all the things that I am really good at.

Tonight - work wise - I am on top of the world.

And yet. Deep inside myself, there is that nagging feeling that there is still more collateral damage to come.

I am a Myers Briggs INTJ personality. That is very rare - perhaps 1 in 100 at best. We tend to be visionaries and what worries me is I can see two outcomes. They are binary outcomes. Armageddon or I turn out to be Bill Gate's benefactor!!! Oh go on - I'm allowed to dream.

The New Me

Well it isn't really the new me at all of course. It is the more positive me. A more aggressive outlook and a more focused use of my effort and attentions.

I am determined to claw my way back to being me and trying not to concern myself too much about the past and concentrate on the future whatever that may hold.

I've made a conscious decision to really tackle my weight and exercise regime in such a way that I can mix work and exercise and not have one cancel the other out. I am also determined to get fit and to re-commence my eating regime. For all sorts of reasons and rightly or wrongly I haven't really done anything in a routine since the BCG treatments. First it was the party then the holiday and then full on with the job and other things and all else went by the wayside.

It is easy to get out of a routine. It is far more difficult to get into one. To do the things you are comfortable with is a human trait. It is doing things because they are outside of that zone which will be setting me my challenges - John F Kennedy's We Choose to Go to the Moon speech pops into my head to do things because they are hard, because they are a challenge and because they push the boundaries. Without setting goals and then achieving them are key elements in the fight back to normality and stopping the roller coaster.

My mate K was there tonight and I have to thank him again as it was his idea that I start this blog. It is everything and more I wanted it to be and it allows me to get stuff off my chest, tell people that it is normal to have whatever is happening to you in your cancer journey and it allows me to look back and realise just how far I have come in 11 months since the blog started and 15 months since I was diagnosed.

So I've had a good day and good evening and I hope that I can just build on that over the next few weeks. I'm used to being the manager and getting my own way and having everything just so - because it isn't has thrown me quite a bit - to get back to "old" (although I don't want old for the sake of it) ways is important as it is my baseline.

Out With the Lads

Went rather well - a bit of a bizarre evening as the sat nav took me to Rochester High Street and Not Chatham High Street. Eventually got where we needed to go and went to the pub and found our mate from Canada already there.

"What beer have you got?" "Sorry we haven't got ANY beer!" "Umm OK what about Guinness then?" - I think they squeezed one out. They had no Cider and some of the lagers were off and the lights in the toilet didn't work. However, that broke the ice and there was plenty of banter going on which was fun. One of the lads had a Video that was 27 years old!! It was made at our old school and is a very early black and white video recording. It is - well - rubbish but has some priceless moments in it, especially a thunder flash that exploded taking the camera off its tripod, deafening the cast, breaking two lamps and two windows in the process. How no lasting damage was done to people we do not know to this day. So the pub sat aghast whilst the lads reminisced about the play, the video, the damage and so on. The guy from Canada and I looked on blankly as we were not in it and were sitting open mouthed at the production quality. We are deciding whether to put it on You tube - it could be the only negatively rated video I feel.

We had a great time and were almost in tears reminiscing. Some hadn't seen each other for 35 years and so it was amazing how we all jelled back together, laughed like drains about the school days and forgot our standard stories or exaggerated them or both!

What a great evening and I thoroughly enjoyed myself - I didn't drink as I gave a lift to one of the guys and it was just a good crack with a nice curry and all for £20 a piece beer and food - not bad.

YOU have control

That is what they say to pilots taking over the controls (especially learners).

The previous blog touched on something that I really hadn't considered recently but did early on. That is that you have no real control over what is happening to you after you are diagnosed. You have Yes/No choices (there aren't many maybes that I was aware of).

So consider that ride - I called it the Roller Coaster that you couldn't get off. As a cancer patient - you are in the hands of a series of people - you have no control over them saving you, your ongoing treatment as, unless you happen to be an Oncologist or Urologist, what would you know about it? The only things you can do are PMA (positive mental attitude), do what you are told and take your medicine and treatment. You can do other things as well, within your power to do, life style changes in diet and exercise and so on, you can get other bits fixed (heart in my case) and so on but these are minor things when compared with everything else.

Now, it has dawned on me that my life was entirely in the hands of other people and that is a bit scary. I had no choice but to do what they said, I took a kick in with losing my job and had the anxious wait for insurances and the like to be reviewed.

All these things are not the way you live day to day - I suppose we all know that we really aren't (if the truth be known) entirely in charge of our own lives but we like to think that we are free and can make our own choice and are in control of our lives.

Well - I haven't been for 15 months now and I think that I'm just beginning to realise that. It is time for me to take charge now. I cannot second guess the outcome of next week's tests but if it is good then life takes a new path. If bad it takes another path but whatever it does, I am aware of what I need to do, I am educated about my condition. I know what effects it has on me physically and what I need to do now is to step up to the plate (as our cousins say).

Step up to what? Well - how about leaving behind the baggage of cancer and making another path for myself? How about stop thinking too hard about it and getting on with it. Stop worrying about what a decision may lead to and go and find out? Lots of things like that perhaps - get control back over my life and live with the knowledge that I have survived a very serious illness and I may never (or I might) fully recover from that. So it isn't that bad. I still have all my limbs, I still feel good, I have my brains (some would argue that), my wit, my eyesight and so on so really there are a lot of people far worse off than me and it doesn't stop them doing things.

I'm not sure how I am going to be "this" positive about this all the time, I feel that I have to break this "victim/survivors syndrome" and get on with life. All the time I stay introverted is time missed from what is left of time here.

Grinding away

Today is one of those days were I am getting stuff done but it is a progression of small mainly boring things that need doing. Each on their own is hardly worth the effort but taken together they will get rid of this pile of junk around my desk and a backlog of things that - unlike me - I have just left on one side of the desk.

I will have to get into serious time management mode once I get out of Hospital next week. There is a part in that which no one likes particularly and that is to throw stuff out that isn't important. I used to be good at that and for some reason, recently, I am putting stuff into piles to "look at later". That pile is driving me nuts and when I look at it now - I could have binned most of it.

The worry is that these things just get left and build up and really I could be so much more efficient, like I used to be. My friend also has the same problem with getting things done - perhaps it was the weeks off work or perhaps something else, certainly the body goes out of equilibrium and perhaps that may account for it.

I need to get some control back again. Up until the illness I was in control and then I got on the Roller Coaster. It probably isn't going slow enough to jump off yet but perhaps I can start to exert some control over this whole thing - perhaps that is it?

The week ahead

It is amazing how quickly all these things creep up on you and how your emotions ebb and flow. I was a little better than I have been at these assessments but even so - the stress was obvious in the raised heart beat and high blood pressure. I'm OK now but feel a bit strange. That is most probably to do with this detachment defence mechanism that I use. This works by saying these things aren't really happening to you.

Now in the main this worked last year because everything was traumatic and pretty horrible and (please let this be so) what I am about to have - if the same as last time isn't quite so bad. Not nice (could it ever be?) but you get used to it. Anyway, I tend to go very quiet and become very inward and yet I was putting on a very brave face and laughing and joking in the assessment clinic.

I don't know - I'm OK - I am preparing myself for next week and tomorrow I'll be all bouncy and my normal self - tonight - I'm a little subdued and a little thoughtful which is no bad thing either.

With that - to bed - goodnight.

Well that's over

Phew!

It took ages this morning as the Doctor was held up in the torrential rain and I arrived soaked.

Blood pressure was high but settled down. I must tell them to take the blood test first and then I'll calm down :-) Everything OK and due in 1st October. At least this time the time is right (checked that) and I have permission to drink so keeping myself hydrated after the awful time I had before. I was suitably impressed that I had remembered to bring a urine sample with a test kit they gave me 3 months ago - I followed the instructions to the letter and you have to make it the 2nd pee of the day. So I was somewhat amused when I got there that they wanted another one. As luck would have it - the delay allowed me to brew one up for them after all :-)

I'm getting an old hand at this - unfortunately.

I am just going to dry out a bit and then dash off to the Post Office. I think I also deserve a small bag of Wine Gums or perhaps Pontefract Cakes.

Assessment looms

Yes - so it does and I'm OK with that - a tad nervous if the truth be known but I should be OK. I won't make the mistake I made last time of almost running there and then wondering why I was in a bit of a state :-)

It is at 9 a.m. so that will give me plenty of time to walk home and take the rest of the day off quietly calming down.

I actually - again - have a lot of work to do and I have procrastinated all weekend. Mind you I was out most of Saturday and got on with a fair bit today so perhaps I'm being a little bit hard on myself with that. But I do need to hit some targets as I am out Monday night, Tuesday up in town, back here, out with some old school chums - some I haven't seen for 5 or more years and then I have some more work kicking off later in the week. Phew - so much to do before 1st October! I'm away for part of the weekend as well.

Oh well - no good rattling on here about it - I ought to be asleep and be up early to get assessed!

A Year Ago

I was not too clever of course and I was a bit of a wounded soldier and was curled up for quite a while not exactly feeling great. Wasn't to drive the car for 4 weeks and all that so I missed going to my Friend's installation meeting. Well a year later and I was able to this time and I met up with a friend who I hadn't seen for some time. He had a heart attack the time before I was meant to meet him and so it was great to meet up and catch up with our "conditions", diets and medication - see I'm getting good at this stuff now. We are like a bunch of kids although I'm not sure if having a bigger dosage of a tablet actually means that your condition is more serious than the next?

On a sadder note my cousin is in hospital with heart problems and another Friend is awaiting some tests as he isn't well either. So I wish them well.

Another old friend was telling me about his recent bladder infection (and later kidney infection) and what they had to do to him - a flexible cystoscopy - when I explained what I had done to me and quite how the treatement is instilled regularly and that I'll probably be getting a couple of them a year for the rest of my life I reckoned I'd made my point..

Finally I saw that Marcel Marceau died this morning - the web site isn't reporting his last words though.

Thoughts on just another step

You can understand when people say that they no longer want to have treatment. I can see that it can get to that point. They just want to say that is enough, I've had enough and that is it.

I feel that way now in a way - but I know that actually I need to do what it takes to get well. I'm young enough and mercifully fit enough to keep doing what needs to be done. However it is the stress for me more than anything else - and I hate Hospitals. I'm quite good in that I can now rationalise about this or be philosophical but it isn't nice and it isn't how people imagine it.

When you talk to someone who has been in Hospital all the "yuk" bits are skipped over - we talk about the food the cleanliness the nurses anything but that there was some bugger shoving a lump of plastic into my hand or worse.

Oh well that is a week and a few days away if I get through pre-assessment - just to think last time I went I had to have blood tests, pills and lord alone knows what... Fingers crossed that it doesn't happen again.

Middle Aged Rage

I am still fuming over this idiots e-mail to me. I thoroughly dislike being set up , I hate someone firing rhetoric at me. Now that it is found that it has absolutely nothing to do with me - have I got an apology? Nah!

Some people in high places - as my friend said - have no stature. Perhaps he is right. Maybe I have to hold the high ground and see how I shape up against him.

Life is too short already for this nonsense.

Anyway, I am off out tomorrow and I am looking forward to that and then I can have Sunday at home and Monday in for pre-assessment - yuk!

Oh well, that is just "another step" as someone told me. Each of these things are...

The Return of the Black Dog

My friend and I had a long chat this morning he calmed me down when the Numpty in the previous post had quite simply called my integrity into question. Probably the one thing you should never do to me is to question that.

Anyway, I was telling him that the Black Dog had a visit last night - no doubt caused by all of this and for the first time in a long while it occurred to me that I might not get the answers or result I want out of this next lot of biopsies. That was a shock moment and one that I hadn't got to thinking about recently. Last year - well it was all about survival, if I'd have had to lose my bladder well that was it but now, we have come so far, it would be a shock if things hadn't moved in the right direction.

To combat that, I thought the good thought - that it was clear and I wondered how I'd react to that news. I wasn't expecting to feel quite as emotional about that either. Of course, I can't predict the future or the outcome or indeed my reaction and so it was a bit of a waste of brain power really but that is the Black Dog for you. When you least expect it up it pops and the brain runs riot.

I like talking to my friend - we understand each other when we talk about our mood swings and our hopes and fears. It is really good to hear that it "isn't just me" going through this sort of stuff. The physical side of things is really the thing I can't quite take in. I am no where near as fit as I used to be and it transpires that the body reacts differently in the way it handles this and you handle it. I am intrigued and I will learn more about this but - basically - what used to happen before when your body was "in balance" isn't happening now and there are a number of things that need to happen to get everything functioning the same way as it used to.

More when I know more about it - it does sound intriguing though.

It isn't meant to sound like this but if you have had cancer, it is often difficult to explain some of the more subtle things that have happened to you. Having someone to talk to who has had the same - and is having the same - experiences as you is really helpful.

The Man's a blithering idiot

I have just spent 6 hours trying to respond politely to an e-mail from some blithering idiot who has near as damn it accused me of being some sort of Muppet. I'm not best pleased, I had other things planned for my time and this utter drivel and unsubstantiated accusations have not only upset me but left a very bitter taste as I have been trying to sort out a problem not of my making and suddenly it is my problem and my fault it happened in the first place.

Some people - anyway they have an offer to retract the e-mail by the morning now as I have written a War and Peace response.

Okey Cokey Internet

Has been driving me mad overnight. In, out, on, off, intermittent, mail works then doesn't, web works then doesn't.

Virgin Media are to the Internet business what Enron are to Accountancy and Audit firms!

No matter how much care you take

Some amateur can undo all your hard work. Like a barrack room lawyer some dick has trashed some work I have done and all hell broke loose when I got home this evening! Strewth

Heads will get cracked and arses kicked tomorrow. The trouble with this sort of customer is that they believe everything some raving lunatic tells them and I end up having to go and sort it out. If half (no make it more than that) if 90% of the people actually stopped and thought about things before shooting their mouths off and creating a crisis out of nothing things would be a hell of a lot better.

Planning

Started already, lining up things for the week I am going to be knocked out for.

So many things I have on at the moment and I need to make sure that I have all areas covered properly!

Close to the edge

Not only a brilliant track by Yes but also a close resemblance to the way I feel.

I could say on the brink but let's say close to the edge. Of what you may ask?

Tears - constantly I feel and have felt very emotional and perhaps for the past year or more. Things that never upset me before, wipe me out these days. So sad things, early death, parents grieving for their children, starving people and that sort of thing now tend to get me "close to the edge". I have always managed to brass out any such emotion as it is important (in the way my personality works) to be the steady hand and the emotional rock. However; since having all this happen to me, I am as likely to blub as to be able to explain what is going on, how it affects the world and all the diagnostic and analytical stuff I used to do.

Part of the territory? It must be, stuff triggers me these days that would never have upset me before. I have to walk out of rooms or hide my face even for film endings where I know what is happening and I've seen before.

Long Day

Still at my desk and I have to be out early tomorrow. I'm mindful that I mustn't overdo things, I'm also now firmly of the opinion that I need to shed even more of my voluntary workload stuff. Frankly I should have dumped some of this years ago but no one else would do it and perhaps now is as good a time to find replacements. I really can't do everything and I expect that now the job has ramped up, I won't be in a position for a year or two to do as much as I do.

I pretty surprised that I somehow managed to continue to do it through everything else really. Crikey, I hadn't really thought about that. I missed doing some things this time last year - I am reminded only because this year I am doing them. Organising things and sorting out accounts and admin stuff really are beginning to give me trouble as I don't have sufficient time to do them. I'm sure I am missing something along here :-) like an appointment or some such thing.

Probably for the first time in my life I am having to plan more than I ever did as for some reason, recently, I just appear to forget things like dates and meetings although - so far - I haven't missed any - I just keep getting this "out of control" feeling. I hope I fix that quickly I am normally extremely good at remembering what people say and keeping appointments and doing actions.

The trouble I am having

Getting stuff done is just crazy. I have a pile of things to do here and I did reasonably well today getting most of them done but there are just so many distractions to cope with. I've noticed that I can get things done when I really put pressure on myself to do them but I cannot do what I used to do prior to all of this - which is just blitz through work and give myself thinking time and space.

Everything just seems to drag and take longer than it should and I think it because I haven't worked properly in an office environment for a while and also that this job has some many facets.

Anyway, I made a good start today and I hope that I can give a bit better tomorrow but I have a meeting screwing that up first thing in town.

Tension rises

I'm very conscious that it is just one week to my assessment and two weeks to my "procedure" as these things are called - it is still an operation as far as I am concerned - if they knock you out and cut lumps out of you what else can it be? No don't tell me, it is if they have to cut you open you can call it that I suppose.

Anyway, a year ago I was getting ready for biopsies when they redid the resection. Since then I've had the BCG treatment and another operation and some more treatment and so this is the next 6 monthly one. I really hope that this is the last one though. It is just one of those things but I don't fancy having this every 6 months from now onwards. Of course if results are good then it does mean a change in the way things will happen. Again, not sure if the alternative is any nicer, just quicker and I have had it before and whilst the after effects aren't particularly nice - I think I know how I could deal with them. The other thing is that the treatments gradually take longer and longer between them meaning that you don't have to screw up your short term plans.

So 1 year and it is interesting to reflect back on how stressed out I was then to how I am now. Don't get me wrong I still have a lot of respect for what I have/or had - it can kill you let's not forget that. The difference now is that things are under control, I am being monitored and if we find that it is licked now - then we can really go and celebrate. I'm still not convinced that everything is exactly as it should be and perhaps this time I can get the answer that I want and that means I can get on with things.

Hope I can stay awake

Off to my Friend's 50th party tonight - luckily I am not driving or I think I'd have pulled out - I am absolutely knackered after last week's training sessions up in Scotland. Just more proof to me (if no one else) quite how much all this has taken out of me. Tuesday is the anniversary of the 2nd operation which could be called by some to be a re-bore of my bladder they scrapped so much of it away.

In fact that was some period during my life when I think about it, I really did take a battering then. Anyway - it isn't happening in a few weeks - I will have to look back to my blog and see what I was thinking might be happening to me in a year.

The Journey Continues

Entering the countdown for the next milestone in my journey and it is just coming up to two weeks to go.

The "nag" at the back of your mind says this will carry on - treatment, biopsies - until a decision is made, the hope part which is much larger reckons that this will be the proof that we can move on to the next stage of the treatment.

I don't mind saying that I really hate going into Hospital and all that stuff - it has to be done but I'm always amazed how some people treat it so matter of fact and work wise, sat there reading their newspaper and just getting on with it. I hate every minute of it but then I've had my fair share of Hospitals when I was a kid and in those days the stuff they did to you was enough to put anyone off.

Right - back to work - I'm not getting paid to talk to you lot :-) Oh of course, I'm not actually getting paid anyway!

So Who Won?

Traveling in my own country I need a passport, I have to be fully x-rayed, my laptop checked, my shoes scanned, my belt has to go through separately. Check in needs to be a long time before the flight as it takes an age to get through.

Of course I don't get this on the overground or underground (despite the attacks a few years back) and yet the airline industry must be losing passengers to this extra security and their inability to check you in and out fast enough. The train (which is now so over priced you cannot believe it) takes almost as long to get where I went and you can plug in your laptop and actually work on that.

So 9/11 - who won - everyone flying and there are millions of journeys give a constant reminder of the day where we said we would fight these acts by carrying on life as normal.

Yeah - right!

Other than this I had a great time.

Marking the beginning of the venture (proper)

It has been three months since I started the job and this week the whole thing has started to gain some momentum as we all head up to Scotland and get the partners trained in rolling out the service. We have a gala awards dinner in November which we are sponsoring part of so that we can start to get national exposure, more partners are signing up and customers are wanting us to get going as soon as possible.

There are still a few things to be put in place so that we can get going full steam ahead. It is getting very exciting now with the prospect of getting the service out there, some national exposure and a controlled ramp up of the business.

So I'm off to Scotland a little later today so that we can start the training and get everyone using the systems.

I doubt I will have internet access up in Scotland so it could all go quiet here for a while.

Surrounded by Lovies

You know - marketing types this morning. Trying to organise sponsorship and awards ceremonies etc. It was quite interesting.

Not sure I'd like to be in that market myself as it was all a bit artificial.

Mind you the Bucks Fizz was pretty good and the food was exceptional so it does have its upside - I imagine the diet is blown but it will be anyway this week as I will be at a Hotel. Who can resist a cooked breakfast?

Superstitious

I am flying to Scotland tomorrow.

11th September!

Oh well not to worry eh

I wouldn't normally do last minute

But tonight I suddenly realised that I am out tomorrow morning off to London and hadn't even printed off my notes or addresses!

Just doing that now at 1 in the morning.

Oh the fun of it - I'm normally very good at doing this sort of stuff too. Just recently have I become disorganised.

Getting nearer

It is getting nearer and nearer. The thought about going back into hospital again is not a good one but I am nowhere near as bad as I was about this before. I think the session I did with my Hypnotherapist really made a massive difference. I'm not getting as bad as I was about this last time and in fact I believe that I might even be looking forward to the opportunity that this will be the last hospitalisation.

The results of the tests, if clear, will mean that the next time they need to check me - it will be under a local anaesthetic. OK that isn't pleasant and it stings a bit for sure! However, it will be preferable to the trauma of Hospital and it shouldn't involve all the other stuff - like injections and cannulas and so on.

It has been a funny old journey to this point. Strange that I have hope that this is a turning point coming up. Hope that I can get on to maintenance no matter how grizzly it sounds to have the BCG treatment or how the side effects kick in. You'd rather have that than the alternative.

I spoke to a friend who has 12 tablets a day and he asked the Doctor could he possibly give some of them a miss - the Doctor replied "If you want to die, yes".

We agreed that this was a pretty compelling reason to take the tablets! Even I - who hates any drugs at all - now take my tablets.

Reflections on the week

Well it was a good week - I suppose anything would be compared to the last few weeks. Things finally started to come good and so work looks a lot better. I'm away later this week off to Scotland for a few days which will be interesting as it marks the launch of the business into the public domain.

This should also mean that I start to get some cash flow into the business as well - always useful.

However - the downside is that I am so tired. I had been out 5 days out of 6 and so that probably didn't help things. So overall I am getting far more positive (despite the fact that it is less than three weeks before I go back in for biopsies) but I am feeling quite tired.

I am surprised (still) how much it has taken out of me.

Tired

I've been out to Dover and back today and last night I was with another perspective partner for the business.

I am as tired as you like this evening. I had a few minutes snooze earlier - an early night is in order.

I'm still surprised quite how much stamina I have lost. I can't keep going for long periods of time working as I used to nor can I recover as quickly. I'm hoping that keeping well will help and exercising just add to that.

Out with the old school chums

Last night, that was good except we have a new barman who put brandy in a scotch glass and vice versa. That made for an interesting first taste!

A good evening - I do get really tired these days - it never used to be like this and whilst many have less sleep I appear to be sleeping longer.

So how do I tell someone

To go and stick their asinine problem where the sun don't shine.

You go and do a batch of voluntary work only for some idiot to start digging you out.

I can't believe this guy - I've sorted out bucket loads of problems for him/them in my own time and all he can do is wag the finger at me. I ought to break that off and shove it up his - oh well you get the picture.

Never teach a pig to sing - it takes ages and upsets the pig :-)

Just like a Pro

Met up with some "older" folks at the Jazz night (as you do). We were chatting about how they haven't seen me since April and what had happened etc.

We were rattling off drug names, side effects and Mg taken etc., like no ones business. Gee it is going to be great getting old as long as you can pronounce (or even remember) what medication you are on, how much you are taking, what the side effects are, how you react to them and how many doctors you know.

I couldn't compete - in a drug filled Olympics for how many tablets consumed in a day I am just a young upstart a mere amateur! LONG may it remain so.

An evening out

On my own - well with some friends - but on my own (without the family).

Off to a Jazz night - I used to be a regular but missed a lot of these because of the treatments.

Looking forward to some decent beer and music - in that order.

The Okey Cokey ISP

In - out - in - out.

All day long the internet is there and then it isn't - what a way to run a business.

Another 2 hours worth of mucking about and finally I am re-connected.

Back to Normal - almost

Wife and girls out of the house. All quiet, no shouting up and down the stairs, no opposing music styles being played in different rooms.

Finally peace and quiet and what happens? Yes, the internet ups and dies and I've spent the past couple of hours sorting that out again.

Virgin Media - pile of poo more like...

Jane Tomlinson

When I said a few weeks back that my friend and I were sitting talking and using the word fraud about ourselves and how we had survived our cancer, I hadn't got an example but today with the sad news about Jane Tomlinson's passing - you might better understand what I mean. This was one feisty lady when told she hadn't got long to live - she spent her last years cramming in a lot of fund raising and awareness work.

Her obituary is HERE. An ordinary mum and housewife who went on to do extraordinary things and to raise over £1.5M.

Looking up

This week has been a little better than I could have imagined. At last some movement on the partners for the business.

At last some people who are actually aware that they have got to put some work into an idea to get some money out the other end.

Signatures going onto paper and after all is said and done a healthy number of enquiries as well.

You know you are getting old when

Your daughter calls you in the morning to tell you that she just passed her driving test! Good grief - she has just dropped her mum off at work and is driving home on her own - brave girl. I wouldn't have fancied doing that (driving solo) less than an hour after passing my test.

A New Week

Let's see how we get on. Businesses should be back at work this week, kids back at school or college.

It has started already so perhaps I'll get some work done after all.

See?

1:30 in the morning and I can't say I'm wanting to be awake but I am. I'm thinking of nothing much in particular. I've decided to get up rather than disturb and I've found my way in here to see that one of my PCs has seized up - only the one running an overnight batch job (of course) so I'll have to do that another day.

I'm annoyed about some of the petty things that happen in life and I guess there is a bit of me realising that the kids are growing up - oldest has her driving test on Tuesday!

I'm just getting old and don't want to. I also am having the mid life bit - you know - I've probably lived for longer than I'm going to live :-)

I have a very bad brain for that sort of thing :-)

Anyone want to say pull yourself together or anything equally crass - get in line!

What the hell is wrong with me

Having got the last bit off of my chest - perhaps I ought to get back to the reality of the situation and that is I am beginning to use the "D" word and recognising that I am actually quite depressed at the moment. The euphoria of being out of imminent danger has worn off. The huge life style change hasn't really happened.

Nothing is quite as I want it to be. It is all somewhat of a let down at the moment. Don't give me any of the old, your lucky, you survived and all that as it isn't that. It is a whole combination of things and events all happening at once. It is the realisation that things move on. That I probably won't change the world. That so many things that may have appeared important actually no longer are. It is the realisation that perhaps I've taken a turning off of the road that my friends and family are travelling along and I'm now lost somewhere.

Whatever it is - I know I'm here and I know when to ask for help, the trouble is it is very personal. It is also a spiral thing in that you get worse when you try to pull yourself out of it. I'm not in a bad one, don't get me wrong, I'm just having difficulty keeping everything together, in some sort of perspective and in some sort of order based on how "really" important or urgent each of these things to be done or sorted out actually are. It is also to do with the next hospitalisation and how inconvenient that is.

I also believe that you'll only understand this if you have gone through something similar - it won;t make sense if you've had your tonsils out or some such thing,

Things that make your blood boil

I have a guy at the moment who wanted to know about partnering with my new business. Now - remembering that this is a business that has been invested in for 2 years by a number of people who haven't seen a return yet and are therefore - what I term - real entrepreneurs. This arse is upset that I've sent him a document where he actually has to invest some capital to get money out the other end.

I am SO looking forward to this "entrepreneur" calling me tomorrow. As you can imagine I will be my charming and considerate self.

OK - maybe not. There is no such thing as a free meal. People who think that they can make money by not putting in any effort need to go back to their day jobs. It is a sad fact that 80% of the people I meet who call themselves entrepreneurs don't even have standard Employers and Employees and Public liability insurance. None of them know about basic health and safety at work, legal and statutory requirements or anything else but have the damn right audacity to tell me that they are entrepreneurs. I wouldn't trust many of them to sit the right way up on a toilet (thanks Rowan Atkinson).

There are so many people you meet who are just a total waste of Oxygen. Unfortunately what I'd like to do to them is illegal but a Vet would get away with it if it were an animal!

Getting towards "that" time

Almost a year ago when I was told I'd have to go in again. That was about now but the Op was 18th September I think. That was the one where I should have been in for a day and when I woke up they'd turned me into RoboCop :-0 well, maybe not.

That was the one that prompted this blog but, if I am truthful about it, that was probably the defining operation and meeting as it showed that the cancer was limited to the bladder, showed the kidneys were OK and the operation got rid of nearly all the really nasty stuff that was in there. I then had the treatment, the next operation and this last lot of treatment. It is amazing to me that a year has gone by already and that I am going to be back in for yet another operation. It seems a lot shorter time than that but the dates don't lie.

So heading towards anniversary two - that operation was a complete surprise to me but - it is standard practice so I understand to re- do the area and whilst I was somewhat beaten up after that - at least I was given every opportunity to survive. You can't ask for much more.

I'm nowhere near as worried about going in this October. I'd rather not but there is no option. It now becomes a matter of fact going in for operations. If anything, it gets slightly easier because you know the worst is over (unless they find something nasty you wont have to go through the hell of the first two ops). There's still the stress to deal with but that is probably manageable now and again, because you know what to expect, you can work your way around that too.

It will also be fun trying to find out what "rules" they will apply this time before they let you go home! I must remember to ask what the rules are so I can cover that one - they changed each time so far depending who was in charge. Inevitably, once I do get home I'll be laid up for a week anyway but let's hope that it is good news and this is the last time I need to go in under general anaesthetic. Mind you - having this sort of thing done under a local is no fun either.

Having said all this - you do start to get stressed out a bit as you get nearer the date.

Same old same old

Had my mum phone up yesterday saying that I sounded a bit down on Thursday - which is true. I'm a bit better now than I was but it is a combination of things that are working all at once.

Not enough time - but when I do get time it gets wasted on trivial things like PCs which are still irritating the hell out of me especially as I can;t get pictures off of my video camera onto the PC - heaven alone knows what is going on with the PC as I can hear it whirring away and there are no programmes active! Then there is the unofficial help desk - another friend needs their PC sorted out - that takes time and I don't say no often enough.

Somewhere along the line I have got to put my foot down and also drop off some of the things that I am doing.

At least some good news on the job front with my first partner signed up on Monday and with a bit of luck my second later in the week. That will be a relief.

I may be repeating myself repeating myself

I had a long chat with my mate again today and we were commiserating about our current lack of physical and mental strength and the things we are doing to pull that around.

It isn't crushingly depressing or a feeling of being totally wasted. An imbalance perhaps we felt, listlessness and tiredness. Then there is the get up and go - which has done just that and got up and gone :-)

He is getting a lot of physiotherapy and nutrition assistance. I'm not but it is interesting nonetheless how similar we are feeling and when you consider that we both went through our procedures within weeks of each other, it makes you wonder whether there is a pattern to surviving or perhaps comabtting cancer. We are in a similar state time wise but he had far more radical surgery than I did and he no longer has to worry about whether or not he will get cancer back as there is nothing left there.

And our conclusions? Well - We went through the experience and we have changed (a lot) but no one else around us has changed. It is difficult to carry on as normal when normal is no longer normal to us. It is like entering a very slightly parallel universe. Only you know you've moved slightly out of synchronisation with everyone else (like a badly dubbed movie).

It is a most peculiar thing to explain but it does feel as if day to day there is something not quite right about things - perhaps we feel we shouldn't be here or worse still - we felt we may be "frauds" as we didn't have all the hair loss and bag of bones looks so many people seem to believe that you should when you have cancer?

Anyway - it gives us plenty of reasons for talking and going down the pub so that is alright then! :-)

Further exploration of the dark side

The Black Dog - as my friend explained is now called Toby. The Black Dog visits every now and then and I suppose is his version of the black or dark cloud or the grim reaper or some such thing.

When the Black Dog turns up you can:

• Burst into tears for no reason at all
• Get all choked up watching emotional stuff on TV or Cinema
• Get all choked up when you see someone achieve something (like an athlete winning) you know what they went through in a way
• Go very quiet and hide away from people
• Have to get out of rooms quickly when you get all emotional
• Act less than rationally when confronted with something slightly out of the norm
• Get horrible dreams about things that happened, haven't happened, aren't likely to happen
• Wake up in the middle of the night and cannot get to sleep - then wonder why you feel so tired when you are at work the next day but you still can't sleep when you get home
• Start to worry about what may happen when it hasn't happened and may not be likely to
• Worry that any ailment whatsoever is cancer of whatever area of your body is suffering at the time (this can get tiresome). Have a cough or a sore throat or your arm hurts or you get an ache and immediately it is cancer (I kid you not when you are in this sort of mood everything is like this)
• General malaise

I'm sure there are lots more and the level of these emotions goes from mild to extreme. They can come and go with alarming speed. The Black Dog can get you when you least expect it to.

It happens less these days of course but you get occasional visits which can take you unaware and shake you to your core.

My recent nightmare? I'm being led out to the scaffold to be hung. Preacher and guards and all. My crime? Apparently I survived - that is it. That's a pretty shaky one to wake up to and I've had this one at least 4 or 5 times this past month.

You don't really need that sort of thing but your brain decides that you probably do and torments you with it anyway.

I'm certain that it is quite normal for survivors to go through this sort of stuff and so I'm not worried about it but it is worth saying it happens and it is something additional to watch out for.

On a lighter note

At least the internet hasn't gone down for 6 days now!

Exploration of the dark side - revisited

It was strange talking to my friend last week about how work was running us down and that we weren't as fit as we thought we were. To look at us you wouldn't notice but long term things like stamina both mental and physical aren't there.

It is easy to drop into a state of "being the victim" which I know sounds crude but is meant to be the state of mind you get into sometimes. I think people survive things because they believe they can and there are documented cases on that - not too many on those that just played the victim though I guess. Things like the job the lulls and the disappointment - yes disappointment of getting back to work. Things no longer meet your expectations and that includes work, family, friends, and just about everything else. You've gone through loads of stuff, you want and deserve better. That is what coming out the other end does to you as well. The only person that actually got you through it was yourself (sure there was support - but did you take the shots?).

I said before that there was a lot of "Self" in fighting the disease, a lot of me, me, me and the combination of all these things. It is strange that I'll be beating myself up for not meeting my expectations and I'll be feeling down because something didn't happen as I wanted or expected it to.

This stage of things is quite strange and I'm in this sort of no mans land at the moment. In a month I'll have my pre-op assessment and 5 weeks away is the next operation so I'm beginning to see that looming large on the horizon. I'll have to take it easy all over again and then wait for the results. Those results are pretty important this time as a positive result will get me onto maintenance. We don't want to know what a negative result will bring do we :-) So there's doubt there as well to contend with.

Will all this change the world? Probably not - so it isn't worth worrying about really!

An Interesting Web Site

Recommended by a friend of mine

An alternative take on your health

Mercola

Bladder Cancer Bioinfomatics Research in Australia

Perhaps some hope for future sufferers?

One to grind out I feel

This week that is. I'm a bit better than I was yesterday. It is like walking through treacle at the moment. Business is so slow but it is peak holiday time and so it is to be expected but it would be good to get some momentum going and get something achieved.

It looks doubtful that it will happen this side of the weekend and so I'll keep plodding away and perhaps next week will be better.

So how am I feeling?

I'm not feeling particularly confident or my usual buoyant self this week. There just seems to be so much to do and I really cannot be arsed to do it. I'd be quite happy to take the rest of the week off and start again next week.

SO far just about everything I have touched has turned to poo :-)

I'll probably feel a bit brighter in the morning.

Slow slow week

Some people still on holiday and some back but catching up on what has happened whilst they have been away. It makes for a long hard week of little or no contact, people not wanting to answer phones or call you back.

It is going to be one of those weeks I am afraid.

Crossroads / Decisions / Future Directions

Yes - it is that time already.

Almost three months are up soon and that is the decision point I set myself on this new job.

I need to make and take some key decisions soon as I ought to be thinking whether I want to have an easy life, an exciting one or just "retire" now :-)

Procrastination sets in already and I'd like to give myself a further month because of all the time I lost with the treatment and the loss of Internet service.

Do I need to convince myself, those around me, you or all three?