Monday, August 09, 2010

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.

Sunday, August 08, 2010

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!

Saturday, August 07, 2010

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.

Friday, August 06, 2010

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.

Thursday, August 05, 2010

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 :-)

Wednesday, August 04, 2010

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.

Tuesday, August 03, 2010

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.

Monday, August 02, 2010

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 :-)


Sunday, August 01, 2010

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.