Troubled Night's Sleep

Not sure why that was - I was awake every 30 minutes or so, strange half dreams, bizarre things going on in my head. I'm at the office now - got the early train and needed to run off some documents so thought "why not?"

I'll test the lie of the land for slowly exiting from here too as it appears my replacement has picked up the gauntlet and run with it and the boss appears impressed too which is great. It is always nice to have chosen the right replacement, one who should be better and can build on my early work.

I said 2 and a bit years ago that I really wanted to make a difference. I think I can say that I did. I can see the work I am doing now fading down as the guy who owns it wants to be in the limelight and he can't do that if my finger prints are all over it can he? :-)

I am hopeful that I may get some sort of Trustee arrangement with the Charity in future years as I'd be able to deliver something extra that way.

It will be a long day today - pouring over a major framework document that I initially spent a long time editing only for the owner to destroy and chop into bits. Once he and his team have finished today, no doubt, I will be asked to stitch it back together, put back all the indexing and all the cross referencing, colour code and interlink the headers and put back all the fancy stuff they originally wanted and wondered why it had disappeared when he chopped the document to pieces! It's a funny old world sometimes.

My body appears to be functioning normally this morning - thank goodness. I still take a bit of a deep breath and hold it when I go to the toilet just in case though :-) Nothing quite like bits dropping out of your body to keep your attention.

Free sandwiches at lunchtime and drinks with my work mates tonight. Let's hope the meeting isn't boring.

Rather unfortunately it appears

That I've still a little more debris to remove from my system some 3 weeks and 2 days after my operation! I could hardly believe it as two smallish clots made their way out. Luckily it was just before I was about to do some exercise so I killed that idea off for the present. I think I will miss out tomorrow - I'm pretty much enforced to anyway as I have to go into London. I will start again on Tuesday and monitor the situation.

It is a fine balance but I want to get back to some regular exercise to complement all the other stuff I am doing.

I'm in the office tomorrow - must be the first time for a month I guess which will be nice. They are providing the food so that will be good too. I'm off in the evening for a few after work drinks with my colleagues which again I look forward to.

Weight - How do I call it this time?

I shall have to say no loss but the little red needle is below the 16 stone mark but not down by a whole pound. So I think that I should call it that it stays the same....

224 Pounds.

Getting back to exercise will I hope start to improve things a little. Not sure the celebration poached eggs, mushrooms and bacon will have improved things this morning but I'm allowed a little off piste eating every now and then, I'm not a Hermit after all!

Exercise

Well that went a little better than expected.

I dialled in level 3 (the starting level for many of the exercise routines) but didn't choose a programme to run. I then put in 5 km (about 3 miles) and 30 minutes. I can normally do between 6 and 7.4 km in 30 minutes. I was surprised to finish 5 km in 20 minutes considering I haven't been on the machine in 3 weeks!

My blood pressure reading is a tiny but higher than I was expecting but give the exercise a few more days and I'm sure it will dip down once again.

I feel reasonable after this so that's OK. I'll slowly lift the bar over the next few days to get back to my 30 minutes and three peaks exercise.

A clearing out of my clutter

I had no idea that I had accumulated so much clutter. We have a thing called Freecycle (it runs locally on Yahoo Groups) and it allows you to dispose (free of charge) of stuff you no longer want but that may be useful to other people. So I have hundreds of CDs and DVDs of software that I no longer need or want and the associated magazine that can go to a new home. Also some records that were lying around and some other bits of software that I've no more use for.

My shelves in my office look pretty bare now but that's OK - all it was doing was gathering dust.

Interestingly A got an old Kitchen Chair from Freecycle that she is painting up as a summer project. She is still up in Edinburgh at the moment attending the Fringe and L is going up at her sister's expense on Monday and returning Thursday as part of her birthday present. She is 17 on Friday!!! Unbelievable - she will start driving lessons soon and I'm just amazed how quick time has gone by.

I'm still feeling great - really upbeat - really happy - really light and bouncy. I know that I probably haven't beaten Bladder Cancer yet but what I do know is that I'm making every effort to stay clear. I feel the need to get back on to my exercise regime this afternoon as I haven't had any bits drop out of my body since Wednesday so I should be all right to get slowly back - not go mad at it just slowly return to peak.

Losing a stone has made a big difference and I intend to keep on losing weight until it gets back to normal levels and my blood pressure and everything else settles to where it should be.

Early morning or late evening

for me - I've just got back from our Curry night - 17 of us out for a few beers and then at a Curry house for a really good evening meal.

Camaraderie is probably a good view of what it was all about and one guy is staying locally in a hotel having travelled about 80 miles to be with us. We are are ranged in age from 30 to 85 and so a good mix and not a bunch of trouble makers - so Flocky Bicep (who is often seen contributing to this blog or being the recipient of my scorn) was the guy that organised it and it is just a great fun evening. We had a good laugh in the pub, great food and fun at the restaurant and we left feeling we had a good evening and both the pub and restaurant profited too :-)

At the moment life is good, my life is in "re-build" mode and perhaps I can re-build my life with my family and with my friends because now - I am normal again. I'm no longer someone different with cancer, being treated, suffering from and different to them. I'm back where I was 4 years ago and I'm socially acceptable again. It sounds harsh but it is reality and I don't bear any malice in that statement - it is the way it is - I'm sure it would be if it was someone else. My friend KL was saying that his wife is now 10 years clear of Breast Cancer and ready to be signed off. In my world she was clear 12 months after we knew she had it following her treatment. I have altered my view since then but if I wasn't a (I wanted to use victim which is the wrong word) co-sufferer I would have a totally different view.

BCAN Awareness Day

Big shame there is nothing like this in the UK yet. However, kudos to these guys in the US raising awareness etc. I support them with the Orange Wristbands - I must get some more soon I'm running out after distributing them amongst friends.

Bob Schieffer on Bladder Cancer

This is perhaps one for the US audience who will know this gentleman. The graphics are excellent.

Bang and my brain explodes

What a good week it has been. Not only has Tuesday and the good news lifted a weight of my back (whether I knew it was there or not), it has also been a good week for releasing creativity especially after yesterday's meeting when suddenly it all started to fall into place about how we could run this business successfully - then the scary bit kicks in about how many £Ms of finance we need to see this through.

Suddenly it isn't just about the doing and the technology and the business setting up. It is also about raising the capital and making sure that it is available and drawn down at the right times and used properly. Suddenly all of that clicked into place too. It's stuff you know about deep down inside but you need the reality of a serious business conversation to flip the adrenaline switch....

Exciting times as suddenly the most difficult part of the business starts to come together. For 3 years we have struggled to express what we are doing in a simple and straightforward manner. The reasons are that we are solving not one but several issues all at once and describing that in simple language is too difficult. If we reflect what it may look like we start to draw comparisions which is unhelpful.

So after many hard weeks and many iterations we are boiling things down to a point where we can actually call it something other than its working title. I'm firing away on corporate planning, financial forecasts and all that good stuff. I just need to get into it and cut loose. There are too many distractions at the moment. The incentive is that this is our own money we are burning and we wont have customers for quite a long time so the longer we spend on it the more it costs us. Also part of the rush is the reality that we have no income to speak of and need the investment to come in in around 6 months.

How on earth I get all this stuff out of my head and onto paper I don't know - I just cannot type fast enough....

It is fab to get my life back again and have something really exciting, complex and challenging to do.

Something to make your head buzz

Phew - meeting went well - fantastic buzz afterwards as my head went off in to full explode mode. The more we get into the depths of our business the greater the challenge. I thought that our scale and ambition has always been set high and today we started to realise just how high. What came across and perhaps surprised us is the availability of finance options.

I don't appear to have any more bit dropping out of my body today. I think if nothing has happened by Sunday I will get back into light training on my cross trainer. It will three weeks tomorrow and I should be somewhere near the zone.

I certainly don't want to lost the habit or lose the benefits that it appears to have brought so far.

It's a curry night tomorrow which with 17 of us going along should be a great evening.

Blog before Breakfast

Then off to London to meet the new potential financial guy. Jazz was good except when I went to the toilet and passed another huge scab. Obviously not ready to get back onto the exercise bike today. I managed to get soaked as a rogue shower emptied its contents on me. Even with a huge golfing umbrella I was soaked up beyond my knees and my shoes were just about to give up when I got into the hall.

It looks a great day - it will be interesting to see quite what it brings :-)

Jazz

I cannot fault going out the the Jazz evening as I really enjoy a bit of live music a a few pints of Old Speckled Hen to wash it all down with.

I need to wind down a bit as today was full on with the new business and tomorrow we actually get to start meeting and greeting people and perhaps welcome another member to our team.

Today it dawned on us just how big our task actually is and in many respects how far we had already come along the way. It is pretty impressive to see the quantity and the quality of the work done so far.

Get off Monkey

What a huge difference I notice in myself today - the Monkey on my Shoulder's gone and I feel light (the weight has gone) I feel bright and cheerful and ecstatic and all because I don't have to have an operation in 6 months.

That and to again have found no cancer inside of me too. If I could exhale for a minute or longer I would do PPPPPPPPppppppphhhhhhhhheeeeeewwwwww :-)

I can't tell you how huge a difference it has made to me - I'm somehow really upbeat, optimistic and cheerful all at the same time. My business partner is here today and I'm looking forward to getting stuck in to an uninterrupted 6 months of work. Tomorrow we go and meet the guy who is - potentially - going to be our Financial man. Tonight I'm off for a nigh at the Trad Jazz evening.

The guy that encouraged me to write this blog

Was the chap I met tonight whose dad died last night. They had just moved back in to the village here and just a few weeks later it was all over and his dad died. The new next door neighbours came over to complain that the lights were left on last night.

"That would be on account of the nurse coming over due to "a serious and sudden deterioration of his condition" my friend suggested. Well - "my wife found it hard to sleep and I hope it doesn't happen again?" "I doubt it" my friend said "he died 10 minutes ago, you should get some sleep tonight!"

He and I like my "I'm Not Dead Yet" Tee-Shirt I wear occasionally. Everyone - listen to me - stop being such annal retentive dick-heads and "GET A LIFE"

How dare they come over and complain that a light was left on when at that actual time a human life was going out??? Sometimes, when I see the world's sufferings and man's inhumanity to man graphically displayed on the news and then you get some self centred NMBY (Not In My Back Yard) on - don't you just want to go and drill them? I know I do - but then I'm getting old and far more right wing than I ever was.

I had a little cuddle with my mate as he arrived at the pub. We don't do that sort of thing normally, we are British and that's not the way we greet each other - you should shake hands and all that but my friend just lost his Dad and after all, an arm round your shoulder says a thousand words because - not only don't we like touching each other, we are also very bad at saying the right thing either!!! It's tough being British as our stiff upper lips get in the way of our feelings and we aren't very good at expressing ourselves. I don't think I've ever given him a "cuddle" but I just felt it was necessary and saved me the embarrassment of having to express my sentiments at his father's demise.

I have to say though that KP - he knows who he is - is massively responsible for this blog and so I do hope that he reads it and realises the major part he has played in getting this diatribe out into to the wide world and the benefit for me - if for no one else?

Respect KP - you've played such a major part in my recovery - I just can't express how important it has been to have this outlet available and your support during that time.

Oh Happy Day!!!

Yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes, yes!

OK - I waited 30 minutes to see the Consultant (Doctor), Jo, my Urology Nurse, picked me up from reception and we walked through. "Have you got your stress balls?" she asked. "I hope I don't need them!" I said as we walked into the office. It was smiles all round and my consultant, obvioulsy not in on the joke looked at me. I explained that I was surprised Jo "recognised me with my clothes on" and that when I have the BCG treatment, I carry in a pair or Stress balls. Having sorted that out - we exchanged pleasantries (as you do) and she just said that the results were clear.

"Great" I said. Then the even better news - "we can now go to a check by flexible cystoscopy"

I have to tell you that this is such good news for me, 4 years, 9 operations and an explanation that the reason they had gone for lots more biopsies, especially around the neck of the bladder (where the original tumour was close to) was to allow them to be able to take this decision.

Relief? You're not kidding. I am so pleased that I'm smiling writing this yet I have a tiny tear of emotion in my eyes too. I was hoping so much to move on and this really has let me do that. I can't even begin to tell you what a relief it is. I had a small whinge about the treatment I had received and also asked for the fainting fit to be stuck on the notes so that people knew not to back pressure my bladder next time (if there is one). I'd certainly say something but thought the notes should too!

As I say that, I find that one of my friends from school I am meeting tonight (we meet every month) just dropped me a note with 2 messages. His brother - who I haven't seen for 35 years will be coming over tonight but that their father died last night, of cancer. The other friend who will be there is the one whose dad died just as I was diagnosed causing all sorts of anguish I can tell you. The one who cannot make it tonight, his father-in-law - who I knew quite well died of Bladder Cancer just last year after many years fighting it. I intend that we will celebrate life and to help the cause Ii have already had three pints of Spitfire on my way home. Mrs. F. and L accompanied me at the pub to celebrate :-)

What a strange and fateful day for me. I like the fact that we will celebrate my friend's dad's life - I have no doubt that is what he would want us to do. I only met him a few times but he was a lovely man.

I am so pleased with the outcome - it was the best news I could have had especially after all that trauma of the past few weeks.

WAMU: The Diane Rehm Show Podcast : NPR Podcasts

WAMU: The Diane Rehm Show Podcast : NPR Podcasts

Also HERE

2nd August 2010 - Bladder Cancer. This is a podcast and is about an hour long. It is very interesting stuff and highlights one of the key things about bladder cancer - that is the sheer cost of treatment and its recurrence rates. Some very interesting points here for the US audience and here in Europe too.

I have been trying to explain how different bladder cancer is to people for a long time, about the long term follow up work and the high levels of recurrence but with the frequency of follow up and the slow growing nature - they are able to give us BC survivors a good prognosis. There are still further treatments and things they can do in the future should I get another recurrence. More treatment, surgery and even more radical things can be done to prolong my life.

It was also interesting to hear that as this is the 5th most prevalent cancer in the US and the 4th here in the UK how little attention or funding it gets. Is this because it is a "below the belt" cancer?? Given how much it costs the NHS here in the UK (paid for by our national insurance scheme) and individual's insurance in the US you would have thought there were some long term financial gains to be made by advancing the research into Bladder Cancer.

One of the panellists has been checked for 30 years (she is only 50) and it could be much much longer of course. Imagine if you will what sort of costs that is for a theatre, all the laundry, personnel, doctor, heating, lighting etc and all the drugs and stuff - then multiply that by 30 and you can see quite how expensive it is.

Interesting stuff I think you'll find.

Verdict Day approaches

I'll have a walk to the nearer Hospital tomorrow - at least it has an open out patients area not like the other place which triggers my claustrophobia off nicely as it is hot and over crowded and pokey.

Let's hope for some good news this time and that the lab reports follow the visual one and there is nothing there. It really needs to be given the experience I had this time. I nearly got back onto the exercise machine today but decided to wait until tomorrow and get the SP from the consultant and then I can make up my mind what to do next.

I'm quite pleased with myself as I made my first batch of Cottage (or Curd) Cheese last night and had some for lunch today. It is pretty good and quite different to the pots of stuff you get at the supermarket. It is much finer grained and a little drier (maybe I overdid the draining). You get a fair amount out of a few pints of milk and you get sour milk / butter milk so Mrs. F. made blueberry muffins with that too.

I am toying with the idea of following Steve K's inclusion of the Budwig Protocol in my diet and so will source some Flaxseed Oil (or Linseed as we call it over here) and some Flax Seeds themselves to add to the Cottage Cheese and try out the mixture. If you follow the link above you will see Steve's take on it and I feel I ought to give this a try to add in to my diet. I've been pretty good about what I eat but once again, this week finds me out three times - tomorrow with my school chums, Wednesday at the Trad Jazz night and Friday Flocky Bicep has organised a Curry Club - there should be about 15 to 17 of us out for the night. Each requires me to drink beer (of course) and Friday to have a Curry. However I do tend to go for fish or vegetarian these days so hopefully that will stop me piling on the pounds.

Exercise - I must get back to it and so far it has been two days since the last appearance of scabs and bits falling out of me. I am guessing that I could easily do light exercise without turning on the resistance magnets just to give myself a light jog rather than a workout. As for the weights - perhaps early next week.

I'm trying to get some sleep but for some reason my mind is skipping ahead to tomorrow - even though there is nothing I can actually do about the outcome!

A Grand Place

It most certainly is a Grand Place. I don't remember it being as crowded as this but then I wasn't always there during the tourist season as most of Europe closes down around about now and everyone goes on holiday.

It was a good break and perhaps the only one I'll get away with this year whilst I am working on getting some funding for our new venture. That is proving hard work at the moment as we grind through the tedious stuff of naming the project (we already have a working name). We need to choose something appropriate and that sticks in the mind. It may well be changed later but we need to rally around a flag and start talking a common language. There will be more later but what we are doing is radically different but we are reluctant to use existing language to express what sets it apart as it associates it with existing technologies. We are nearing the holy grail of having new language and new definitions, a sales drill and other things. We are also close to getting the team built now as we have found our "missing link". I'm pretty good at financial stuff and have produced all the finances to date but really needed as specialist. It looks as if we have found that person which is great.

I am feeling a lot better today and I'm getting back to work albeit a bit slowly as I need to catch up on the work my colleague has done whilst I have been off work. Tomorrow I find out what the results of the biopsies are and where my future lies. I was impressed today as I needed a belt to stop my jeans falling down!! I seem to have shrunk around the waist and chest all of a sudden even though I've only lost a few pounds this week. Strange :-)

Denial?

Not a river in Egypt - a thought going through my head.

It could even be not taking it seriously or taking it too lightly. It just appears to me that so many people talk to me and it's the way that they look at you and the tone of their voices that trigger this reflection on whether or not I understand the gravity of the situation that I am in. Sounds funny? Well to me it does as I don't look at it that way.

I think that there is some measure of truth about being in denial or not taking it seriously as I am certain that it doesn't actually accomplish anything for me to be thinking like that so it is a bit of kid-ology attached to it. I think that bladder cancer is also "a little different" to other cancers in as much as it is very treatable in the way that I've had it. In other words, whilst it is nasty and we all know it is a killer, in bladder cancer terms, caught early, non-invasive and low/medium grade as mine was - is controllable. After they've gotten rid of the offending tumour, treated the bladder with BCG, they keep their eye on you at a minimum yearly.

Bladder Cancer is slow growing and so they can quickly whip any new tumours out or identify any areas of concern. That's happened to me already with a minute recurrence but this time all looks clear. The downside is that I'll be being checked regularly for the rest of my life by the looks of it and possibly that will be yearly (I don't know what the future is on that) I assume. It may be different with advances in treatment over what's left of my life.

Because I am comfortable (might be the wrong word) that they can catch any recurrence in a timely manner and that they should get this before it has an opportunity to harm me, then I feel a certain level of confidence about the disease I've had and feel I should convey that by being positive and optimistic to people I meet. I guess we are all, deep down, frightened of Cancer and perhaps that is what people don't quite get when they meet me. I have a pretty healthy respect for it but I also think that you must also communicate the good stuff too. I survived, modern medicine boosted my immune system to fight the cancer and these days you are more likely to survive. All of these things are worth communicating and I like to consider that I am being a mini ambassador for the disease and for the advances in treatment that mean I survived.

I don't think I'm in denial and I'd like to consider that I know pretty much what has happened to me, why it happened and what I can do to improve my survival chances. All these things are actually good news and deserve to be communicated. I imagine that generally things are negative and such things as hair loss and the loss of loved ones to Cancer sets people's behaviour so that they see my attitude as unusual and the opposite of what they expected.

Denial? Maybe but only for self protection - I never ever want to go look down the abyss again and I surely don't want my old friend the Black Dog to come visit again.

Weight this week - a pleasant and unexpected surprise

224 Pounds or 16 stone. Good grief - I thought I would have put on a lot although I have eaten sensibly and done plenty of walking. That's about 1 stone since I've started my "health kick". Still more to go and it is a good feeling to start noticing my clothes being loose on me.

Perhaps I should complain to the Belgian Beer Companies that their beer isn't full of enough carbohydrates :-)

Talking of Belgian beer - I did enjoy a few (as you do) and still like Duvel (Devil) as it is quite strong but not like the Trappist beers. There are some bars in Brussels that sell around 200 beers and there is a different glass (shape, logo etc) for every beer. One of the more amazing ones is Kwak which comes in a wooden handled mini "yard of ale" type glass. I recommend a visit to Belgium just for the beer alone.

As for my ongoing recovery - overnight I've been visiting the toilet every hour or so - which is to be expected as I have been drinking a lot to ease the pains I was getting. This morning, after several more bits have fallen out or been passed out I am a lot better and peeing is less painful. I'm still quite tender around my bladder / stomach area but that is only to be expected I guess. I'm going to take it easy again today - plenty more water to drink and hopefully I'll be fit enough to return to exercising later this week.

And some more

Yep - the yuk bit has just gotten under way - it happens every time but at the moment - I can now see why I'm as badly beaten up the large scabs/clots dropping out of me are anything to go by.

It is amazing that this much drops out of you - who would have thought your bladder was that big in the first place?

I've only to now wait until Tuesday to find out what the results are and what they are planning to do with me next! Gee - I hope that it has been worth all this messing around and that they don't want to do this all over again in 3 months. I guess I could live with a 6 month Cystoscope but I ought not to second guess their verdict.

That could be why

I just went to the toilet and a huge scab/clot was passed and I'm just wondering whether this is part of what I was told would be "a little more painful than usual" as my consultant warned me?

Certainly it appears to be larger than usual and I'm glad that I am taking my own advice and taking it easy today. I imagine there'll be a bit more of this to contend with over the next day or so and that should be it. It is, after all, 2 weeks since the Operation.

Tourists

Are funny aren't they? Waiting for the train (or even at an airport) why does everyone queue up when the train or plane isn't even called yet but an official walks towards the doors?

Me? I travelled for a living at one time and so am used to hanging around waiting and knowing a few golden rules about such things. You have a seat number for a reason and if you aren't there, they'll soon call for you. And why queue to get onto a train that still has 30 minutes before departure?

So it was amusing that the lady who stepped up to examine the door suddenly found about 400 people queued up behind her. We let the queue go down for 10 minutes and ambled to the train and got on our seats without hassle. They don't knowingly leave anyone behind...

I suppose it must be me but it is so simple to travel hassle free and well planned. I must say, I find A is great at planning and knowing where she is - probably because she is quite a traveller herself. She is back off to Edinburgh on Monday for a couple of weeks. For her sister's birthday she has given her a return ticket to Edinburgh and some tickets for the Comedy Festival - which I am sure she will love. She will be travelling on her own and I'm sure that she will be fine if she observed A's map reading and organising abilities.

I'm feeling a little better at the moment but urinating is a bit painful. It is strange, it is more of an ache than a stabbing pain. It is similar to many of the early issues you get after a rigid cystoscopy without the violent stinging that sometimes accompanies that. I just need to make sure there is no retention. So far there hasn't been any but I need to be aware that it can happen.

I'm no Jean Claude Van Damm

Obviously! The first day in Brussels and I was keen to show the family around. The wonders of high speed train travel - especially as we had to wait years to get the high speed line itself built. We left at 5 in the morning and by 09:30 CET (08:30 BST) we were arriving in Brussels. A brisk walk to the Hotel and depositing our luggage I took the family on a guided tour of Brussels. Not bad as I hadn't been there for 12 years.

We walked for miles and miles doubling across the capital and seeing all the major sites before arriving back at the Hotel to check in and then we went and did a large circuit around the canal area. By the time we got back we must have covered 6 to 8 miles I reckon.

Out in the evening for a meal and then it began to dawn on me that I wasn't quite my usual self and I could feel that I'd pulled myself about a bit. I think I've just managed to pull around my bladder / groin area and urinating was becoming a bit difficult - and a tiny bit painful. The next day we went to Heysel and the Atomium in the morning - that was all by Metro so not too much walking involved and then we stopped off at Louise for some brief shopping and then got back to the Hotel. As it was mid afternoon - I volunteered to stay propped at the bar whilst Mrs. F. A&L went out chocolate shopping, visited the Cathedral which we had only spent a brief time at before and had a wander around.

The next day we went to Ghent which I had last been to 18 years ago. I had to admit - I barely recognised any of it apart from the centre. It was very quiet when I was there last and they have had a huge building project since - I didn't recognise the 2.5kM walk into town and we had a canal tour and pottered around in some pretty impressive churches they have there. We had the most wonderful lunch and by then I was beginning to get a bit tired again so we headed off and got a tram back to the station and headed back into Brussels. I still managed to slightly overdo it but I suppose you do a bit. I feel a lot better than I really am.

The train home was fantastic and we were home in a little under 2 hours from Brussels which is great if you think about it - I guess we were travelling for 3 hours in total from the Hotel. The tickets are valid for travel anywhere in Belgium so we reckon we could be in most of the good places in 4 hours! Incredible.

So at the moment I am sitting down, taking it easy and wondering when I can get back to some level of exercise that doesn't damage me. Tuesday is results day and with any luck I might get a 6 month reprieve from the Cystoscope machine :-)

Ran out of words

On that last blog. The flash backs were pretty painful and I'm pretty amazed I'm still here after all of that.

At the time, you really haven't had time to research properly and to sift out all the dross and nonsense and snake oil from the facts. We didn't know how bad things were at the time but they got me into Hospital in record time. As I recall I was diagnosed on the 21st (Friday) and was having the operation around 3 pm on the 25th (Tuesday). It was really hot, I remember that. I remember being absolutely terrified of what they would find in the results. Things were OK later when they let me know that they had got the tumours out etc. My journey had begun. It is a long way on since then - a return to health in many ways after a seriously low point in those early months and now I'm very much under observation and control but there has been a huge piece of the old me ripped out and lost. To balance that there is a slightly better me in certain areas and a slightly more cut throat renegade me as well.

I can't say that I am happy with those changes - they've made me a different person and not being in the greatest of health I've come to realise that I'll never be the full on person I once was. Not a bad thing either - I probably worked myself into ill heath if the truth be known and burning the candle at both ends may be exciting and rewarding but to affect my health like this was not what I had gotten in mind. Better to find out 4 years ago than later I reckon.

Brussels tomorrow - I am really looking forward to that - although it looks as if the weather has turned so no al fresco eating which would be a shame. Fingers crossed it doesn't rain too bad.

4 years ago

It was this very day 4 years ago that they chopped out the tumour(s) and I started recording what things were like. First in emails and later on in this blog. A lot has happened and I'm pretty sure that it has been a healing process.

Weight

Not unexpectedly I've gone back a pound so I'm now 226 pounds. I'm still pretty tender and took a look at the exercise cross trainer and decided against it. I will have plenty of chance to exercise in Brussels - the only real way to see that wonderful city is by foot. Every turn leaves you with just another glance of this enigmatic city and you can't see that from the metro - although the tram is a bit of a gas.

I'm not too concerned with a small weight gain - in the old days it could have been worse as I hardly ever graze and snack - apart from on fruit or vegetables these days.

I still have a long way to go in the weight loss project. Considering I was at least another stone (14Lbs) lighter 4 years ago and possibly last year I was a lot nearer that mark - I still have a long way to go.

A Year

Since we were on our Cruise - a year!!! It doesn't seem possible that at this time last year we were in St. Petersburg.

I am looking forward to being in Brussels later this week as a tourist this time though. Even though I spent weekends there, I was still with colleagues some of that time and it isn't the same. It will be good not to have to rush to see everything and who knows I may actually get to the Atomium this time having only ever driven past it before.

Stop Draining MY Energy

The one thing that you really notice about surviving cancer is the lack of energy it leaves you with. I suppose Stamina is the missing bit. I can attest to this as I can suddenly just lose my energy very quickly these days and can just feel myself switch down and slow up. This is par for the course and exercise and eating properly begin to recharge your batteries.

What the title is about is this - people can rob you of your energy and it is like someone just turns you to drain. Where before I could listen to people's troubles and woes - now - I find it just drains me and I can't do more than a short time now as I just wilt and can hardly manage more than a few tens of minutes.

At some point in time maybe your energy levels returns after cancer but I haven't seen it, in fact it just seems to get worse. I think I might just tell these people to leave me alone as talking to them (no listening to them) just drains the energy out of me.

I Glance at my watch

Exactly 7 days ago at this very time I was waiting to go into the Operating Theatre and everything was OK with the world. I would have gone home on the Saturday morning or perhaps the same day.

After Flocky turned up this morning I have to say I am feeling a lot better than I have done this past week and I hope that I can quickly recover my brain power which still feels affected by the Anaesthetic.

I did however have a "moment" thinking about my situation and invariably, the one thing that balances all of this is that, I'd rather be alive and have gone through all of that nonsense last week than the alterantive. I'm a lucky guy - I'm alive 4 years after being diagnosed with cancer. I'm still here and I still have my bladder etc. I can only speculate that the mauling I got this time was for a specific reason and my Consultant decided, on the spot (we hadn't discussed this before the Operation), to go for a full set of biopsies for some reason.

Knowing that invariably I am going to have some more of these operations does give me some concern but I am planning on discussing this fully and quite frankly and explaining my concern that the explanation of the procedure and the documentation they give you is nothing like what actually happens to you and that I am quite prepeared to have gone through all that nonsense if I knew it was coming. If I knew that I'd end up like that with extra tests and the other stuff - nasty though they may be - I could prepare for them and cope with them.

Best Medicine

I feel SO much better this morning. Amazing what a couple of beers and a nice Curry with good company can do. It was ever so reasonable too as they have a special banquet offer. Very nice food it was too.

Flocky Bicep is on his way this morning to buy me a coffee which will be good.

What is still a bit of a worry is the side effects of the General Anaesthetic this time - I am still having memory problems and cannot find the right words to complete my sentences. It is OK writing like this as I can take my time but the lads were laughing as I would be half way through explaining something and then lose a word - they were probably laughing at my getting angry with myself.

Looking forward to

A pint and a curry tonight. It will be good to get out of the house and meet up with a few friends. I am looking forward to getting a bit of work in tomorrow and going away for a few days next week.

Thursday

And I am still sore - my middle, and bladder area are decidedly weak and twinge giving and it still stings a little to pee. My hand is bruised as are my legs just below the calf muscles and I'm still a little "slow" in conversation - I just cannot choose the right word in a flowing conversation which amuses others but frustrates me :-)

Another quiet day today - a little walk around the block again and I am out with a few friends tonight for a curry. I'm getting driven there and back which is a godsend - I could have got there and back by bus easily enough though - I would normally walk it but it feels out of range.

This is definitely the worst I have felt after an operation for biopsies. It isn't as bad as Scar Wars I and II but it isn't far short of them either. They did predicate a need to be inactive for some weeks due to the serious nature of the TURBT work they did. Here though, there was plenty of evidence of lots of activity. The debris and blood have stopped some days ago and now it is a matter of about another week before the scabs come off and I can feel confident of doing some serious exercise once again. Sitting around doesn't really help me feel any better but anything too energetic can set you off bleeding again so it is a balance.

4 years to the day

That I was diagnosed with Bladder Cancer. I remember that day. Gee the after sting of the flexible cystoscope and the matter of fact way my consultant told me I have cancer stick with me long after the event.

Appointment Through

Already - that is pretty fast - 3rd August I get to hear what the results are and what the next steps might be.

It occurs to me that this sudden need to take lots of biopsies in lots of places including the neck of the bladder (slightly below where the tumours were) might be some precursor to something. Otherwise - why do it? No good second guessing but I sure hope there was some sort of point in going through all of that nonsense last weekend.

I'm looking forward to a few days off with the family and to practice my French again. Belgian beer is pretty good too and their seafood (Moules et Frites or Fruites de Mer) well - what can I say - I'm really looking forward to that.

The dreams are back

Last night was like being stuck in a cinema such were the nature of the dreams I had. Amazing train sequence and one set in a warehouse and school (I know they don't make sense) but these were just amazingly clear with relatively crisp narrative and even a moral story in one of them.

Each was a waking event dream which pre-empted a visit to pass urine - all that liquid I've been drinking to irrigate my bladder has to go somewhere of course. I've missed these dreams for a while, perhaps all those films yesterday and the train could be to do with the Eurostar to Brussels - who knows?

It is another hot day today. I ought to take some fleeting steps out into the real world. Maybe I will wander around the village and see how I get on. As long as I take it easy it should be OK.

A lazy day

I've only done a little today and watched a few films - some of the Tour de France and written Scar Wars IX. I've also managed to book a short holiday with the whole family. Finally - and I mean that finally - after weeks maybe months the girls have managed to find a slot so we can all go away. Of course there were many caveats and ifs and buts so eventually after judging these on merit we booked a short break to Brussels. I haven't been there for about 12 years when I worked with Pfizer. Before that I did work there with AT&T and Banque Paribas and it is one of the nicest cities in Europe in terms of getting around and the multitude of things to do.

I doubt the night clubs I used to visit are still there or some of the restaurants but it will be nice to go back there and see how it has changed but I am looking forward to it. We are lucky in that there is a new International Station just 10 or so miles from us and so we can drive there, park up and catch a train to Paris or Brussels or loads of other places.

So perhaps our last holiday together. A has bought L a ticket to Edinburgh and the Festival so they'll both be out and about, plus other Festivals and trips they will not miss out by any means. L has her Provisional Driving License which is pretty amazing. The first time I went to Brussels on business she wasn't even born!

Scar War IX - A Nick in the Neck

Scar Wars IX
A nick in the neck
A long time ago in a galaxy far, far away
Our hero Dave Sky-nando once again tackles Darth Urologist and her henchmen (and henchwomen)
An attack on Bl’dar with Cystoscope and Cauteriser once again threatens our hero’s sense of humour and builds further character. The battle may have been lost but is the war entering its final stages and will the evil empire be defeated? Read on…..

Things had started so well. Exercise, low blood pressure, packed and ready to go, a slow walk and get to the Hospital just after the time required meant no waiting around and straight into operating gown and curtained off area. Plugged into my MP3 player I was off and in to the zone I use to protect myself from the Evil Force of Darth Urologist. I saw the Deep Sleeper Anaesthetist and the Registrar before seeing my Consultant and chatting through the “just having a peek and a few biopsies” stuff we normally do, what to expect and as I’m an old hand at this we agreed that I knew what was going to happen and all that stuff.

I signed the consent form (I must remember to take my glasses next time) and all was fine with the world. At 1:30 the man came to collect me, I jumped on the trolley – we checked my name and birthday, he said “You’ve done this before” and he wheeled me off to the Prep room – for the first time it was the nearest Operating Theatre not the far one but they did say as it was Friday there wasn’t much on.

Prep was easy – my heart rate was high – it always is and my Blood Pressure was high but not as much as some of my previous visits and the cannula was in by 1:40 but there was no Consultant and so we waited. The Registrar said he was going to have to wait as my Consultant “Knew my bladder and what it looked like”. My Consultant arrived 30 minutes later and I was relieved to see she was all OK and that I was ready to get this sorted. I wasn’t too worried – I knew things would take their time I knew this as I had programmed myself to let them do this in their own good time and not mine. I was still pretty early into Theatre and I was in front of everyone else in the room so all appeared fine. The Anaesthetist got me to hold the Oxygen Mask on my face and blow me that’s the last thing I remember until finding myself in recovery.

I came to not knowing where I was or what had been going on. After a few seconds I clicked in where I was, where I was in the recovery room and then when I looked up to my horror I was wired up to two huge wash out bags alongside my plasma bag. I was breathing Oxygen but asked whether I was cathetered if so why? I had to wait for my Consultant to turn up and explain it to me. I wasn’t happy but then shoved up to the eyeballs with General Anaesthetic and other drugs – I doubt I was in any position to rationalise what was going on. No, I had two possible permutations. I was connected to all this gear like I was when I had my initial TURBT and my Re-TURBT (Scar Wars I & I). That could only mean one of two things – a major recurrence and therefore lots of cutting and debris to get rid of or a perforated bladder which is a risk albeit a low risk. I was hoping for the latter of course but knowing there had been a recurrence 3 months ago I feared the very worst.

My consultant came out and saw me visibly upset and explained that after she had started the procedure she had decided to take a lot more biopsies and to take some around the neck of the bladder. By doing that she would have caused trauma to that area and there was a possibility that it would restrict the flow of urine and be painful and she had therefore put in a catheter and wash through. She had also taken some samples from where she did the work last time. I forgot to ask the question but she may have said all was OK but I missed that. I was transferred to ward 8 (another first) and was hooked up to the oxygen and offered some water. I know what to do and so started drinking for England but I have to say I have never been this thirsty either, my throat was incredibly dry.

I managed to see my Consultant and ask the right question. It was amusing as she at first thought I’d forgotten what she told me in recovery. No I hadn’t I just hadn’t asked whether it was clear. The answer was pretty good I guess “whilst there were some pink areas, they appear to be from the past operation biopsies.” She went on ”The bladder looks clear and I would be surprised if the Lab reports come back with anything different.” It was then that she dropped the bombshell that I would be in until Sunday. Such were the nature of the cuts inside my bladder apparently that it meant it would have to be.

I found that they seem to allow mobile phones in the ward these days and so when Mrs. F. arrived she found my bag for me and I was able to text out to the world that I wasn’t going to be home Friday night or even Saturday but that it should be Sunday.

About this time it starts to get to the point where I lose my sense of humour. When the nurse took my blood pressure which was low for me and average for everyone else, they left my table, with water jug and glass and things on it pushed away from the bed out of reach. WHY do that – surely you must realise with all the stuff strapped to me I can barely move???? Numbnuts! I eventually see a nurse and ask whether it would be possible to assist me. They do but no apology! Attention to detail people – attention to detail – how hard can it be to work out that I can’t move? Damn, I was going to be in until Sunday and the girls and Mrs. F were doing the Race for Life run in London so how was I going to get home etc…

That night I managed to fire off some SMS messages from my phone and I settled down to some mince and mashed potato which was about all that was available. There isn’t a lot to be said for Hospital food at the best of times. The people were nice but I just seemed to feel that they weren’t paying close attention. As we shall see it comes down to you looking out for yourself.
I was particularly not looking forward to a night inside and with lights out at about 09:30 I started to listen to my MP3 player but gave up. I also hate being in Hospital as I am prone to snore if I sleep on my back and I don’t like disturbing other people. As luck would have it, I know how to sort this out by wedging myself over on my side. Easier said than done with a catheter and more piping than BP used to cap an Oil Well!! Luckily, as the nurse came down to check my urine bag he decided that the wash through bags were no longer needed and they were removed and a bung shoved into the Catheter and so I was able to turn in bed and in fact become free enough to move around. Carrying my bag I was able to have a wash and brush my teeth but how sore I was already was apparent and of course, you cannot freely move with a tube shoved up your penis and into you bladder (no DON’T TRY THIS AT HOME).

The night passed quite well – I was able to hook myself over to the left and hang with an arm on the rail and propped with a pillow so followed a night of fits and starts as the poor two chaps opposite me (Kidney Removed man and Appendix Man) had various treatments done, Morphine shots and all sorts. I was awake early and at 5:30 they came around and start the ongoing process of Blood Pressure and Temperature taking, giving out pills etc. The long Saturday had started. I got up, sat on a chair and plugged in my MP3 player and waited for breakfast at 8.

What happened next sort of started the whole thing off for me as one of the Doctors turned up to take my blood. “You must be joking I said.” “No, we need to check your white cell count”. “I’ve been in 9 times and this is the first time you have ever taken blood from me here.” I was obviously pretty put out and made it known that I was pretty pissed off. Its not as if I’m a real Jedi and needed my Midichlorians sorted out for pity sake. I find the whole thing tiresome and in normal circumstances it would not have been necessary as I wouldn’t even be there. Again, one of my problems is that it isn’t in the plan I had for how it should all go. I kind of said something along those lines that if they hadn’t carved me up so bad none of this would be necessary. Those who know me may suddenly realise that this is me at my worst – I don’t do all this fluffing about stuff and if I’m in that sort of mood you get both barrels.

As is usual, just as Breakfast starts so my Consultant shows up! Luckily she tells me to continue eating whilst she sees Kidney Removed Man and another chap out of sight of me who has some sort of blockage. Then my Consultant looks at my urine bag and says “That’s looking nice and clear”. “You really want to go home don’t you?” I guess the Doctor who was with her had explained quite how bad my reaction had already been to them wanting a blood test and she knows me and my ways “I’d like to I half pleaded.” “Well we can take the Catheter out now and see how it goes but if there is any restriction we would have to reinsert the Catheter.” Now I know what you are thinking, you’d have taken the chance but my eyes are watering just writing this and so I thought for about 2 milliseconds and replied that “I wasn’t brave enough to consider having a reinsertion (having only had treatment ones before) and that an extra day would be fine given the ‘risk’”. Also it made sense that like normal, it would be out at 5:30 the next morning and I’d be home by lunchtime. There was the little matter of an anti-biotic injection if a catheter is in for more than overnight but that was a small matter and once that was done it was just a matter of banging out 3 good samples of urine in jugs before they let you go.

Saturday was the most boring day ever – it was hot and airless and I managed to drink my way through too many jugs of water apparently. The TV requires paying for and at the cost they wanted I could have bought the TV. On and on the day went, visiting came and went and meals appeared and were eaten. A bag of sweets kept me sane and finally at about 8 pm my MP3 player decided enough was enough and stopped working. Luckily I have a back up MP3 player and spare batteries so I switched over and used that one.

Night again proved awful as it was hot and sticky. Somehow, around 2 in the morning I must have managed to go over onto my back – easy enough done with a catheter hanging out of you – it hurts like hell if you pull, push or rest on it. I was awoken by a nurse saying that I was snoring – apart from frightening the daylights out of me she asked the dumbest question of all time. Are you ready for this? She asked “Do you snore this loudly at home?” My answer? “I don’t know, I’m always asleep when I’m snoring!”

With that out of the way I managed to get sorted and spent what was left of the night in a fitful sleep making sure to lie on my side. Kidney Removed Man and Appendix Man managed to get on and off to sleep with some heavy doses of pain killers.

5:30 came and they did the usual vital measurements – again – low for me. However no catheter removal. Was it on the list? Yes it was but no one was acting on it until my Consultant came along. The Doctor came along again with her blood stuff but not for me – she probably saw the scowl I had on my face by then. Everyone else got tested though – maybe this was a new thing?

At this point in time I was a bit concerned as breakfast arrived and my Consultant hadn’t shown up. They weren’t going to remove the catheter without her and so at 9:30 I was relieved to hear her say that it all looks good that can be removed and you can go home. I remind you that this was 09:30 Sunday morning. At this point in time, I fully expected that by 10 things would start moving. I spoke to the nurse who knew nothing about it but had to find the nurse who was walking around with my Consultant. Then at 10:30 there was a break through – they agreed that my catheter can come out but they needed to make up some anti-biotic – I looked strangely at the nurse – “make it up” – “We haven’t got any it will take half an hour”. Now I looked surprised as you’d have thought that they’d have anti-biotic on a surgical ward. An hour later 11:30 or thereabouts she tells me she has got the anti biotic and turns up with a saline bag that has had the anti-biotic stuck in it. Now I often wondered why they kept cannulas stuck in your hand if they didn’t use them? She sets it up and then says – in a sort of absent minded way I forgot I need a urine sample from your catheter. OK so she does that and here’s where the trouble started I reckon. She didn’t get a clean go at it and charged the syringe number of times which really hurt my bladder and started it bleeding as the resultant blood in the syringe showed. Then she said that my cannula was gummed up and she need to clear it. So she disconnected the saline drip and shot this large syringe of cold fluid into my cannula - it felt cold and sort of made its way up my arm.

OK so I’m sitting there really pissed off now this slow drip is going to take ages, she’s hurt my bladder and I can see blood and bits coursing down the pipe to the urine bag and then I feel it. I start to feel a little nauseous and a little hot, then my breathing started to quicken and my ear drums started throbbing. Oh no, I realised exactly what was happening. My chest started to heave and I managed to get my MP3 player off and push the nurse emergency call button. I grabbed the arms of the chair and braced myself – the next thing I knew was I was coming around and mumbling and my legs and arms were thrashing about everywhere. The nurses looked pretty scared – I spoke to one of them and said I’d fainted (obviously) and they laid me on the bed, got me completely flat and this must have been around 11:45 as lunch arrived as I was lying down.

I explained that I was almost certain it was the flush of the cannula or the back pressure on my bladder. I explained that this was exactly what happened to me the first time I came in (Scar Wars I) when they tried to correct a blockage in my catheter and with a similar outcome.

You would have thought that someone would have come around to see me after 15 minutes or so wouldn’t you? No it was 30 minutes or more later that they came around and saw me – I then asked permission if I could get up and have my lunch as it was getting cold. “but its salad said the nurse” “I know” I said. So I managed to eat my lunch and then lay back until gone 1 pm when the drip finally finished. The Doctor wanted to keep me in and in no uncertain terms I explained to my nurse why she wasn’t going to keep me in and exactly why. This seemed to work and finally at 1:30 the catheter came out. Could I have the cannula out? No apparently not. I went for a shower and then of course had to do the obligatory 3 pees in a jug. I managed those at 2:10, 2:30 & 2:55 at 3:15 they finally came and ultrasound scanned me and I was free to go at 3:20 at 3:30 I arrived home.

Nine times in the past four years I’ve had operations, seven of them have been rigid cystoscopies and like travelling in parallel universes there is not one that has been the same as another – not one! What is that all about? Somehow I would have thought that there would be some sort of commonality as suggested in all the literature you ever get from the Hospital before you go in – but as in the Corporate World that’s just the advert – the real thing is often a lot different to how you expected it to be. Let that be a lesson to us all.

Swelling

Yes - marked swelling where my bladder is - and sore too. Not pleasant but bearable and I have to temper everything with the knowledge that if I had the offer of those three days versus a clean bill of health then I would have taken that so I can only be grateful that it is my health and not them having found a cancerous growth or some other thing to worry about.

As always - I need to work out some way of not losing my equilibrium when it doesn't go the way I thought it should go. I had even planned for the unexpected and the possibility that there may be another tumour - oh well - I think that I need to try once again to work on a way of letting these things happen without me getting myself all in a twist.

The trouble is being a control freak doesn't help. Being out of control doesn't do a dyed in the wool Programme Manager any good whatsoever.

Weight

Well I weigh this morning - before breakfast and after perhaps draining myself with the three or four trips to the bathroom last night - an amazing 16 Stone and 1 lb. That's 225 pounds.

I ate very little in Hospital and in fact even yesterday I only really had soup and fruit with Spaghetti Bolognese last night. The portions I eat are much smaller I notice and I no longer snack - well that's not true - I snack on fruit and celery sticks if at all.

Crickey - 225 is pretty good - my waist isn't good at the moment as I'm sure it is swollen from the beating it has just taken under the cystoscope and cauteriser thing.

I doubt I can keep this sort of loss up although I'm still 14 pounds or so heavier than I was 4 years ago so it must be possible and I'm still 2" around my waist and 1" around my neck larger than this time last year - none of my shirts bought for the cruise fit me at the moment so I'm probably getting back towards where I should be. When I was a young guy I was just 11 1/2 Stone but amazingly fit and that was when I was working on site and leaping around scaffolding and doing all that manual labour an electrician does. I've filled out a bit since then :-) obviously :-)

Good thing I wasn't in Hospital longer or I'd be my target weight in no time!!

Up Early

Surprised me but I am up at just gone 5 this morning. No idea why although I did go to bed early yesterday and Hospital means you are normally lights out around 9:30 or so. I feel quite well and generally my skin is now returned to warm from clammy.

I'm probably as beaten up as I was the very first time I went in and had the TURBT. I'm not as weak and in generally as bad a way as I was then but I was also dealing with the diagnosis and in some respects the shock of it all. I also firmly believe I had been ill for some time and that finding out it was cancer can going through such a traumatic experience over what seemed like an age (but was less than 4 weeks total) was a major event.

Talking of major events, Mrs. F, A & L took part in Race For Life on Sunday - they went to the big one at Hyde Park in London meaning that I had to have alternative means of transport home on Sunday. I probably don't want to think too deeply about why they and all their friends do it but they had a lovely time all dressed in pink and I've yet to see their photos. I'm sort of humbled that they'd take part.

Today is another rest day for me. I intend to take it relatively easy and maybe work up some ideas for Scar Wars IX. I can still feel stinging in my urine which means there is blood present although I can't see it at the moment. I must weigh myself and publish that for Steve too.

Yuk, yuk and double yuk

She wasn't kidding when she told me that there'd be a lot of debris and blood as she had taken loads of samples. Today was gross out day and detritus was a constant stream in my many, many trips to the toilet. I'm an old hand at this - you drink constantly up to 5 pints of water a day - I reckon I've done more than that to get a 15 to 20 minute frequency going. The more you pee the quicker you get the healing process going and the less painful it gets.

Pain was the least of my worries the gross out bit never fails to make you cringe. Lots of large bits were falling out but have now stopped.

I'm feeling a little better yet still slightly angry at the 3 day sojourn rather than the in and out.

Off to bed now and feeling quite good after a shower and a shave. Tomorrow I hope to spend a little more time up and about - I lazed around and watched DVDs, Avatar, Kill Bill Vol 1, Catch me if you can and Papillon - all of which were good value I felt. The last one was a bit like the Hospital - especially the food :-)

I was all set to

Burst into tears - I was close to it, I admit. I was so utterly frustrated at the pace things were going at a stupid pace and then a pretty serious set back in my recovery which basically meant I fainted or passed out late this morning got me quite rattled with the doctor who wanted me to stay in. After "a few words" I got my way and managed to get home but the trouble is, after all my saying about "things will take their own time" and "what will be will be" you can hardly expect as it passed 48 hours after the time of my operation that I still actually wanted to be pleading to go home. However, I can be pretty persistent and pretty persuasive when I want to be.

Well I am off to bed and will have to sort myself out tomorrow for a weigh in. A quick look tonight shows 232 pounds, but I'm weighed down with a good few pints of water in my system to get me irrigated and so seeing how little I actually ate these past few days I'd think there is some loss but I have to wait and see.

For someone who likes to be in control and let's face it, I've had 8 of these Cystoscopies, not one of them has been the same as the other. There is no pattern, little logic or rhyme and reason behind them. The leaflet is straightforward and states a series of facts and not one of them is correct for this particular visit. The problem comes when you set yourself up for the obvious answer to facts and factoids (I love that word) presented to you and you make a "logical" assumption only to find that you are WAY wide of the mark. I woke and found myself cursing the fact I had a Cathether stuck in me but worse that that two huge saline irrigation bags alongside my plasma bag and I really thought that they'd found a tumour and TURBT'd me. What else could it possibly be - the only experience I have ever had of that sort of set up was the original TURBT and the first Cystoscopy that turned in a Re-TURBT (Scar Wars II - has many of these traits too). How wrong was that? Way off beam, no tumours at all, no funny things that looked like tumours. So how come I ended up with all the gear? Biopsies in the neck of the bladder and as they were there they re-did the areas from last time and another lot as well, in fact they just went to town and used my bladder lining as an open cast mining town!

Anyway - bed - I must get some sleep. However, fear not, there was also plenty of humour along the way....

I have just re-read this post - this is why you should not sign legal documents, drive a car or do other things (like write a blog) after a general aneasthetic. I will leave it as it is to serve me right in the future :-)

Sunday Afternoon???

Yes Sunday afternoon and I finally got back from my Cystoscopy. Wait until you read Scar Wars IX for absolute details - let's just say "It's been emotional!"

The good news out of all this utter turmoil is that it looks clear and my Consultant said "It looked OK, a little pink where we operated last time" (3 months ago) and "I would be surprised if the lab results show anything different"

The comedy of errors and the sheer amount of work they did mean that Scar Wars IX overran Scar Wars I and Scar Wars II by more than 4 hours!!! So this is the longest of any of the procedures to date and it was just a check up :-(

More later - I'm OK that's important. I'm pretty sore, very p1ssed off and quite emotional but other than that - fine :-)

You've been here before

I certainly have been here before. I am now plugged into my MP3 player, listening to Supertramp as it happens. Just doing some odds and ends, updating Facebook, updating here, getting myself into the zone as far as I can and just preparing myself for the rest of the day.

I'm pretty much neutral on outcome - by that I mean I haven't prejudged it this time. I wait to hear what they say and I hope for the best but may have to accept second best. I really hope that they can just get on with it and get me out as soon as possible. I just want to be on the other side as soon as possible.

I need to do a trawl around the house and check everything and then wander up to the Hospital. Scar Wars IX here we go.

That's a little better

Crashed into the exercise regime and did a 30 minute burn. Took my mind off what is going on later, brought my blood pressure down and with a bit of luck will allow me to potter about until 11 when I need to head off to the Hospital. In fact I might go 10 minutes later to arrive just after the time they want me there. This will save waiting in that awful waiting room I hope and let me get straight to my curtained off area to get ready and into my zone.

Floods of Dreams

They are strange things dreams, my Dad was in a few last night, chatting away to this chap who is actually seen on TV and we were in some old fashioned shop chatting away about some cycling down to the coast or some such thing. A fitful night, as you'd expect and a nervy feel this morning. I can feel my heart thumping away and my Blood Pressure reading is reassuringly high, so high that I am not going to record it on my chart until after I've done some exercise. I've made a decision to do that this morning - more as a distraction than anything else with the possibility it may just get my breathing and Blood Pressure under some sort of control.

Light breakfast has been had and I am now on water only until 11 and nothing after that until after the operation. My MP3 player is charged up and ready to go but I'm not packed yet - I will do that in a minute or two once Mrs. F. and L go off to work and school. I then have the place to myself and can sort myself out accordingly.

As I often say to myself, it will all be over this time tomorrow. I hope that is the case. More importantly, it is whether there are any recurrences and if there are, what grade and stage they are at and what to do about them. If things are clear, that will be good. I feel pretty good although I have sympathetic pains in and around by bladder and the back of my hand - strange sensations both.

I feel pretty good - albeit I know I'm a bit stressed. I'll see how a bit of exercise and a shower and shave make me feel. Hopefully that will burn away some of the hours.

And so to bed

Well I will do once I've sorted myself out for tomorrow. I need to be up early for a light breakfast and then I can do some checking before taking myself off to the Hospital. I'm charging my MP3 player and have spare batteries for the other one. This time I am taking ordinary music - not particularly soothing classical like normal to see if I react any differently to some rock, progressive, pop and general music.

I didn't do any exercise this afternoon - I really just couldn't be bothered and the golf was on and I spoke to my business partner around about 3 pm and realised that I wasn't concentrating on doing my work and I was going "into the zone". By that I mean going through my rituals and beginning to go into a shell like existence where I'm in myself - I'm sort of safe there and lost in my own little world that protects me from myself and builds up this shield when I have to go to the Hospital. The roller coaster will start tomorrow and I have little or no control over where it stops and how things will work out. Ideally I'd like for it all to be over in 5 minutes and then to be home in an hour after going in but that isn't going to happen.

Experience has told me the best thing to do is to just let it roll and go with the flow, it will happen in its own good time and it is no use getting all het up about it, what will be will be and that's all there is to it.

What they find will be what they find and I can't do anything about that either and so it isn't worth the worry and when I think about the past I begin to realise that this is the way of it from now on. I am being well looked after and monitored closely - I'm young and so they want to make sure. That sounds a bit callous but I think that is what I read between the lines.

I hope that I'll manage to get some sleep tonight just in case I am kept in overnight tomorrow again. I hate that - really hate it and so I will hope to "challenge" my Consultant to get me out on the same day like last time. If I have any wish at all it would be that - there is nothing worse than trying to sleep in a busy Hospital ward!

I had to laugh a minute ago though when I saw Steve K's Blog - he and I are having a friendly weight loss competition - what made me laugh was the thought that maybe I was only going in for biopsies to lose more weight. It only hurts when I laugh - or will do for two or three days anyway. Well at least that brought a smile to my otherwise serious face this evening - thanks Steve :-)

Well I had better be off and get my bag packed ready for tomorrow.

Here it comes

It is difficult to describe the feeling to you. it is a heavy feeling, clawing and at the same time it also has a distinct taste to it and it is stress and a bit of fear all rolled into one. It has just gripped me and the reason is that in about 24 hours I'll be wheeled down to theatre for another set of biopsies and whilst I'm uncertain of the outcome - I do know what to expect throughout the day.

It is strange this feeling, breathing is a little more laboured and suddenly no real interest in or ability to do much in the way of work. It is just as if a switch has been thrown and I just feel down although in reality I keep my upbeat thoughts - my body refuses to be as cheerful as I think it should be.

Oh well - here we go again, much as before I just have to get myself into the zone and go with the flow. It is going to happen at their speed not mine and I just need to remember that I'm not in control tomorrow, much as I'd like to be. It is however Friday so maybe they'll push things through a bit quicker so they can get home.

Exercise - the upside

I guess you have to grasp on to anything if you have to do exercise. So here's my upside. My blood pressure is way down and still going down which is just great - so there's the upside. I also do feel much better and a lot fitter plus my weight is coming down gradually which is great too.

Breaking the habit of regular exercise in the next week because of my operation will be hard I think but perhaps I can do some light walking so as not to disturb the scabs that will be in my bladder. We will see I guess.

Run in to Friday

Well - here we go - it's half way through the week and just a few days away from my operation. I'm struggling to keep focussed on my day job at the moment as there is just so much to do. The need for a schedule is pretty key and that is down to me to refine and complete. I hope to spend time after the operation doing that as I won't be mobile and can sit down and just crack on with that.

So much research and work to do it is mind mending stuff. I hope that I can spend my recuperation time in getting some more of that cracked too.

I've some DVDs arriving in the next few days to keep me occupied as well - I'm looking forward to getting my hands on those as it can be pretty boring hanging around doing nothing for hours at a time and whilst I'd like to think I can do some work - I won't be able to sit at my desk for long periods of time for a few days at least.

Run Down to Friday

I am on the run in to Friday and I was out with my friends tonight. It suddenly dawned on me that my friend's father died around this time 4 year ago and I was unable to attend the funeral mainly because of my need to visit the toilet around every 20 or 30 minutes.

I wrote a letter to him and his mother and I remember the guilty feeling I had that I got cancer just as his father - who was such a lovely guy and massive friend to me - was losing his battle with Colon Cancer. It was about this time 4 years ago. I have to admit to being quite upset that I caused even more upset to my friend at that time. He lost his father and I remember calling up to see how things were going and to explain my situation and then realising that my situation could only add to my friend's problems. Suddenly I felt guilty for having contracted my cancer at the same time such a close friend's dad had died of his.

Compliment

My business partner turned up today and took a step back and said "Blimey, you look really well" which is a nice thing to hear. I haven't seen him for 2 weeks and I suppose Ii must be looking a bit tanned after the weekend away and I must be 4 or 5 lbs lighter. It is funny how, all of a sudden, you look slimmer - my stomach is just a belly now not a near full term pregnancy!!!

I went back to exercising tonight and my blood pressure is now way down on even a few weeks ago at 120 over 75 for goodness sake. I used to have 125 as a lower reading (well almost - only kidding). However, it is staggering to see how much it has dropped down in just about 5 weeks or so. I am hoping to continue to slowly drop weight and to get back down to a reasonable weight and I hope that I can achieve really good results by September or October.

Work continues apace and we were bashing out more plans and bits today. It is hard grind and can be quite boring too so it is good when we get together and share out some of the work and see how far we each have got.

I am out tonight with my old school chums. At least I wont be getting any rubbish off of them like I got last week. We shall be enjoying a few beers and I'll be wishing my friend well as he goes off on his Baltic Cruise and follows - roughly - what we did last year.

That was nice

I haven't been to G's Lodge since the day he was initiated and that's a combination of things including my own Lodge of Instruction meets on Monday and I'm relatively senior and have to be there. My treatments, when I had them, happened on a Monday and I was generally in no fit state to go and a million and one other reasons. However, I made it at last. A little early but that was good. Very good as I had to travel by tube in this hot and muggy weather.

As regular readers know I happen to suffer from a couple of worrying character traits and phobias. The phobia that is the worst is claustrophobia and so as you can imagine - a trip on an Underground train is right up there on my list along with drilling a hole in my own head, plunging my body into boiling water and a few other things I could think of. But as I got away from work early I was able to catch the train early and so spend a nice quiet few minutes in a pub in Tufnel Park drinking a rather cheeky Red Beer from Cornwall - Mmmm. It was boiling at the meeting and I managed to get a job to do which I did enjoy. A vegetarian meal was provided and so that also made for an interesting evening. One of G's mates drove me most of the way home which was great he dropped me at a railway station and after 2 minutes wait I caught a train to my local station and a further 2 or 3 minutes later the bus turned up so I was home by 10:30!! which is great. A good result all around.

Pleased that I didn't have any travel issues on the Underground at all - not even shortness of breath so pretty impressed. i did though notice my behaviour about where I sat and how I get on and off these trains, how near I sit to doors and windows etc.

That's strange

My ears are getting longer, my nose has started to twitch a lot and I've taken a rather strange like to carrots. Time to move into the Hutch....

Out all day tomorrow - time to face the wrath of my co-workers for not turning up on Friday after the crazy afternoon of credit card cancelling and all that jazz! What a day Friday was. This Friday coming will also be one of those days too. Scar Wars IX breaks the horizon and I'm trying not to get all emotional about it. In a way, it frightens me that I got a recurrence last time and perhaps there will be something worse there this time. That's why they've brought it forward 3 months so they can check that out. I hope for the best but this time I need to be a little less optimistic about the results so that if it is worse than the results I want, it doesn't come to me as big a shock as it did last time.

Diet will be blown off the rails tomorrow as I am back in the office and they are providing lunch for our meeting and then I am off to a meeting in London, which will be great as I haven't been there for a long time. I just hope they finish at a decent time so I can get home OK. Last time some nice chap gave me a lift back as I was in danger of missing my last train. As I recall - I got a really late bus home - almost the last one!! I have been assured that this time it will not be a late one. Fingers Crossed.

Weight

16 Stones and 3 lbs - which in real money is 227 lbs.  I suppose I shouldn't be surprised about that as the Hospital measured me lower than that on Wednesday and this week I have actually noticed things like my trousers being really loose, my jackets are no longer tight especially around my stomach.  Even my thighs look thinner - if that can possibly be :-)

I'm very pleased - I reckon the weather must also have a lot to do with it - I've been eating (except last night's barbecue) rabbit food all week and just a little fish or meat.  Generally, I eat salads with some sort of fish or have baked potatoes with baked beans and Tuna and some low fat cheese.  I'm still thwacking back cottage cheese and taking my pro-biotic yoghurt drink every morning.  I'm eating lots of fruit and also have dried fruits too.  I have no sugar or sweet things, no crisps, no cakes or anything like that - if I want a snack I go and get a piece of fruit or a stick of celery or some such.  It is slightly more than my target 2lbs a week but I'm sure there are anomalies with the measuring equipment and some sort of plus / minus thing that goes on.

I will have to be careful after I come out of Hospital as I tend to "boredom eat" if Ii am just sat or lying around all day recovering.  If you've not had a Rigid Cystoscopy the main thing is that they insert a large tube up your urethra  which leaves you pretty sore for 24 to 36 hours and uncomfortable for about a week I suppose.  Because they normally take out 6 biopsies from your bladder to examine, and these are cauterised wounds, they scab up and you must be careful to let them heal and they tend to take a few weeks to clear up completely.  Unfortunately you do tend to pee a bit of blood and the odd clot for a few days afterwards and then perhaps up to 2 weeks later can pass some bits.  It isn't painful just unnatural and therefore disturbing.  So as you can imagine, leaping around, doing exercises or any other over exuberent activity is seriously frowned on.  I did some and set myself back - this was probably in early 2007 and I was told just to take it easy.  Things like driving especially a heavy old clutched manual car like mine are also not advisable for the first week or so.

Well, I am pleased with my progress to date and I am pleased that I've changed my eating habits enough to continue to lose weight with the help of my exercises.  I am not expecting too much in the way of loss in the next 3 weeks though.  

Thing are a little cooler

The weather has broken down a bit and with a bit of luck we can spend a day in warm but not humid conditions. Yesterday was almost getting to unbearable and doing anything was difficult. Exercise was right out and so that meant 2 days without doing any. I am out all day tomorrow and so it may not be until Tuesday that I can get back to doing any and then only up until Friday and my operation. I might even consider doing some exercise before going in to hospital - at least my Blood Pressure will be low :-)

I need to go and check out my weight etc in a short while and publish that. I'm hot expecting great things this week especially with a few days missed through the heat.

Too hot to exercise

Saturday was so warm today that it was difficult to do anything but hang around indoors with fans blowing air around. It is too hot to do anything and there was no way Ii was going to tackle any exercise today in case I overdid things.

Feeling OK, a little p1ssed off with yesterday's nonsense with the on-line fraud stuff. An me after all my years in the business too.

Other than that - an easy day just everyone is boiling hot.

So that blew my Exercise and going to London

I spent half the afternoon sorting this out and doing the usual changing passwords and all that good stuff. What a nightmare.

It is boiling tonight and the fans will be working overtime in our rooms to keep us cool. The humidity is through the roof - we just aren't used to it. Hopefully we will get some sleep but it will be difficult.

Come to think of it - doing exercise in this would have been pretty meaningless I cannot imagine it would have been comfortable or constructive.

Roll on the weekend. I need to just enjoy it after the annoyance of today and the brain work I've done and - of course - getting ready for Scar Wars IX next Friday. At least by this time next week it will all be over. I hope it isn't as hot as it is today....

Bugger

Identity theft - what a dumb ass. A long day, it's very warm and I fell for it. At least I knew as soon as I hit the button what it was and blow me - at least we were able to call it in and stop the credit cards straight away. Clever - really clever and I even did some looking around first to see what it was all about. They've been very clever by using a system that points people to their site.

Dear Lord please give me one minute on my own with one of these low life good for nothing waste of oxygen wasters - oh yes - I need a baseball bat - and I can so something about it. Ripping them a new rectum seems somewhat appropriate. So I didn't get to go up to town and have a few drinks with my work colleagues I have gone through all my email accounts and everything else on-line and changed the passwords.

So, let us hope that something very nasty happens to them and they get caught and locked up with the big boys in prison.

One Week Away

This time next week I will be going into shut down mode ready to wander off to the Hospital to have the next procedure. Nine times in 4 years I'll have to set out a chart one day to see the pattern of these visits. I hope my Consultant is there and can get me out on the same day again like last time. It made a big difference to my general well-being. If I can get home on the day I feel 100 times better and can sleep in my own bed rather than in a noisy Hospital Ward.

I hope that this time they bring my bag to me quicker so I can listen to my music if I have to hand around. There is nothing worse than having no book to read or nothing to take your mind off the clicking of the clock on the ward.

Suddenly I feel a bit melancholic about things and I just let out a huge sigh. The thing I have to keep saying is that there was only a pin-prick of a tumour in the bladder which they took out - it was low grade and everywhere else was clear, no cancer, nothing else, just clear. So a minor setback is all it is, being called back in 3 months is a precautionary thing. If they find nothing this time then we move on, if suddenly we have more of a recurrence then another course of action will be needed. Quite what that is has yet to be determined and until something is found isn't necessary.

I expect my mood to get slightly worse over the next week as it draws nearer. Let's hope that it all goes well.

Happier things before then of course, the F1 Grand Prix is at Silverstone this weekend, the World Cup plays its last two games, the Tour de France is under way - only another 2 weeks to go on that. The Open can't be far away either. L has her provisional License ready to tackle driving once her 17th (yes 17th) comes around in August. A is getting ready to go on her 3rd holiday of the summer (poor students) and she is planning on taking us somewhere, not that anyone has actually told me when they are available.

Being a control freak really does have its problems. Talking of which I found this trawling around the Internet which I thought summed it up pretty well:

Makes your blood boil

I can't believe the utter mess this guys has made of a document I spent at least 20 hours making nice after the last time he tackled it. Now he's split it into three documents - 3 - what is he playing at?

I've just delivered the bad news like - if you want my time you really ought to book it and let's face it, he cancelled a whole day of my time last week (or was it the week before). So I didn't get paid for a day that was booked and now I'm doing MY work he wants me to drop that and help him out.

So I've fired off a late email with the news but honestly, we have people needing to review and comment on it by Monday and it may not even be published until late tomorrow night if I can squeeze in trying to repair all the damage done to my original.

Hopefully he will realise that I can't just dangle around waiting for his every whim?

Thrashed on with exercise tonight and got rid of much of the anger that this incident had caused. I hope that I can report a loss of weight on Sunday but A is angling for a barbecue as it is going to be a hot weekend and she bought me 4 beers which are chilling in the fridge. That would utterly kill my diet which again has been mainly rabbit food. I do like though mixing up the salad with fruit and nuts and dried fruit too. Today we had peas in their pods to shell. So lunch was a can of vegetable soup (yes even in this hot weather) a small bowl of peas followed off a little later with a really nice ripe Green Fig. I even had a few cups of tea today - which is very rare for me. I'm a bit of a coffee nut but today it just made a change. With salad this evening with some Mackerel and a few shredded crab sticks, I reckon that I've probably only eaten 1,000 calories at the most maybe less that that. I'm certainly much better with intake of food now and a salad takes me 15 minutes to prepare and I can take at least that long to slowly eat it. It's all about not snacking and filling you face too quickly and eating the right things etc.

I'm still seeing improvements in my Blood Pressure readings and I did jump on the scales tonight to be disappointed that they don't appear to have moved much since Sunday but they didn't read what the Hospital ones did. Maybe I ought to invest in a more accurate weighing device :-) Anyway, I try to only look at my weight on Sunday when I record that, along with my measurements - waist, chest and hips which I enter into a BMI calculation. It shows a gradual decrease in weight but not much discernible in the other measurements excepting that my waist must be getting smaller as my trousers are noticeably looser and my belt is one notch tighter.

I'm feeling a lot better in myself and that's also a good sign I reckon. If you feel good about yourself then your self esteem is up and you start to feel that much better.

I have to sort out tomorrow morning whether to go and sort out this set of documents or not. If I do I set a precedent (which I also do if I don't do them I suppose). He will just have to learn that I am not a resource which you can throw a switch and I'm there.

So let me get this straight

I send you the document I've worked up into great shape 3 weeks ago and you've destroyed it and cut it in half. Then you've damaged all the functionality and the sections and the headers and footers, destroyed all the page numbers, the indexing and we now have two documents because you "think" that is the right thing to do?

We have a meeting on Monday and you really expected me to put it all back together by this evening so it can be issued to the team? Oh and you want to send me the 2nd half of the document to tidy that up too. Of the 120 odd pages that need to be reviewed by the team prior to Monday (and It's Thursday late afternoon now) you felt it was then fair and reasonable that they'd get the document tomorrow some time? Yea right your having a Giraffe (that's laugh in your language).

I have my own business to run and so I may deem to answer this at about 10 tonight and ask why? I was meant to issue the document not spend all my time repairing it tonight. I won't budge either, I've got my stubborn head on as I have been working all day on researching where we can get funds from. It is hard work mapping out all the people you know and where you can get introduced to go and get some finance. The trouble is that we need a lot of money invested in a controlled manner. We have specific requirements and reading some of the hoops you need to go through it makes you wonder how anything actually gets off the ground. The personal costs involved in agreeing terms seem to amount to the actual cost of doing 6 months work - again, they're having a Giraffe too in my estimation.

Right - I've done enough work for now - off to do some exercising and get ready for a relaxing evening.