Back in the land of the living

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

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

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

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

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

Watch this space I guess.

How quickly the body/mind forgets

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

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

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

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

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

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

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

Getting ready

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

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

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

Crazy work day

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

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

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

What a Day

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

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

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

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

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

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

Whew clearing up

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

Not a good start to the morning

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

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

No News is

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

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

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

Fed up sort of day

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

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

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

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

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

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

A day on my own

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

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

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

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

Only a 4 day week

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

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

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

FANTASTIC News for Steve

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

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

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

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

Steve's Judgment Day

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

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

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

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

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

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

Nothing like a show of blood to get my attention

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

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

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

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

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

Back to work tomorrow

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

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

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

What am I doing here?

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

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

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

Insomnia and Bad Dreams

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

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

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

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

Bank Holiday and Sssshhhhhh - the Sun is out

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

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

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

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

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

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

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

On reflection

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

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

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

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

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

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

The blood letting

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

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

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

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

Working at Home again

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

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

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

End of the second day

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

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

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

First Day was OK

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

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

Getting ready to return to work

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

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

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

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

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

Crazy Sunday Sport

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

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

Gauging how my recovery is going

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

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

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

A beer an a ruby

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

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

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

Getting There

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

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

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

Ooooopppps don't lift that

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

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

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

Things - their transient nature

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

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

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

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

It never goes away

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

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

More Pictures - Copenhagen Opera House

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

Harry Potter

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

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

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


View Larger Map

Lazy Day

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

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

A Beer with Flocky

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

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

Each day gets a little better

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

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

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

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

Looking forward to seeing Flocky later today.

Boiling up a bit

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

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

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

The Amazing Rock Church - Helsinki

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

Continued progress

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

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

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

I'm Not Dead Yet

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

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

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

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

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

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

Scar Wars VII

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

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

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

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

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

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

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

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

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

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

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

RU1?

RU12?

IM1 n U?

IM12,

U2?

Stupid Droids :-)

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

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

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

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

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

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

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

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

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

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

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

*A creation of Steve Kelley Inc. :-)

Bath and Bed

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

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

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

Home

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

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

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

Another hot one

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

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

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

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

Another Judgement Day

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

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

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

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

Weighing in with the NHS debate

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

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

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

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

I suppose I ought to get to bed

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

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

Good night.

An evening out to distract me

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

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

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

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

Last hours at work

Are dragging by. I've a few things left to do and I am reliant on others to do their bit to release mine. So struggling along with 5 minutes works to do in the next hour and a bit!

I'm still reasonably positive about tomorrow. I know it isn't going to be great but at least I know what is coming and at least in a few weeks I'll know if everything has been successful. I was amazed to hear that a friend of mine is still having the occasional full set of biopsies. He has been receiving treatment for 10 or more years and is on the "old" regime.

Here's hoping that things get moving in the next few minutes or else I will be bored stupid. I also want to get packed up here so I can get home and take L and the family out for a meal tonight. That will take my mind off of tomorrow.

Attitude

My attitude has definitely changed about this particular operation. It IS different to the last one. The last one was to make sure that the maintenance had done its thing and that there was no recurrence. That was 8 months ago and now this one is to make sure that there is no recurrence as I haven't had any treatments since September of last year (or thereabouts), almost a year without the BCGs.

So my expectations are much different to the previous which looked at how treatment had gone. This looks at how not treating me has gone. We now see if leaving things to their own devices has actually left my bladder - clear or not? If this is clear then we cross another bridge, change our roller coaster ride and move to a different level once again.

The whole feeling is different because I haven't just had treatment and need to see what has happened. It makes for a different approach to what you are having done and why you are having it done.

I'm hoping but not banking on this being the last one of these full operations but I do also have to realise that I did have an aggressive form and so I might have to come back for more of these operations in the future if my team and my consultant deem that necessary.

At least I am not as uptight about it as I have been - unless - of course - they turn me away - they didn't think that was likely this time as it is a quieter period.

Perhaps it is just something you come to accept after a while, it is now routine and may be for the rest of my life. You just have to get on with it and accept it. I like the fact that lots of people think I am being quite good about it all and keeping my sense of humour. The answer must always be with cancer, you have to rule it and not let it rule you.

Tomorrow is a good distraction

It is Ls 16th birthday which is very special and a milestone for her. She can now have her ears pierced with our blessing and that is lined up and I am taking the family out for a meal tomorrow night. It WILL NOT be entitled the last supper either.

I am most impressed with her finances in that she saved well over £4,500 to go on her trip to Argentina and almost all of that is money from work, paper rounds, bag packing, boot fairs and sponsored events as well as birthday and Christmas money etc.

I'm feeling quite laid back about Friday, noticeably so this time and I can't imagine why that would be. Even on Monday my blood pressure was reasonable (considering) and I wasn't quite as bad as I normally am. I'd hate to say that I am getting used to it, although I do know the ropes and I am an old hand knowing most of the Urology nurses by their first names as well as Audrey who is the pre-assessment nurse. All of them are just great.

I surprise myself with how relatively calm I am writing this and I hope that I will continue to be able to keep this level of calmness for the next few days. I doubt that I will come home on Friday but if I do I have assurances that the party will be dispersed early. I'd actually, on this occasion rather not be a party poop-er.

Mrs. F. told me that my next door neighbour isn't well again. He had a lung removed with Lung Cancer and looks as if he may have some sort of infection but he is going in for X-Rays. Fingers crossed for him.

My Open University colleagues dropped me a line - it seems many of them passed and they are arranging for a meet and a drink which I do hope I can make as I was disappointed not to complete the course. It would be nice if the Hospital actually don't beat me up and I can make it. They all sound very proud and excited about it - which they should be it was a great looking course and I just wished it could have turned out different.

Getting Ready for the Operation

I must remember to sort out my MP3 player and get myself set up with a book. Last time I wasn't expecting to be in overnight and I ended up with a catheter and an overnight stay. Depending on who performs this one and what they find when they peek inside will determine how long I am in for. I really don't want to be waking up to see myself all plumbed in to a load of bags as that will mean either they've puncture my bladder or they found tumours and cut them out.

I remain quite positive about this still. I like it that most people think that I am being very brave and good humoured about it all. I suppose I am - and I have to, there isn't really any other way of looking at it is there? You have to take it as it happens and I can't do anything about what they find inside.

I see that HK in Toronto had his Cystoscopy today so good luck to HK for a good result. It is nerve wracking and a bit like waiting to see if your lottery ticket has come up except that in this case you desperately hope it doesn't come up :-)

Liked the last one of the Gold Room? How about a Golden Roof

Click on images to make them larger:

This is the entrance to the Peterhof Palace some 40 minutes drive out of St. Petersburg on the Gulf of Finland. If you think this is amazing, wait until you see the fountains. I think I can see after just a few palaces like these why the had a bit of a revolution! Just amazing and these aren't all the fountains either, there is a whole park full of them.

Another Photo - The Gold Room in Stockholm City Hall

Adjacent to the Hall where they hold the Nobel Dinner is this wonderful room. It is made up of 19,000,000 individual mosaic tiles. The picture just cannot do it justice another place that was close to awesome. Consider how long it would take you and a team to assemble and set 19,000,000 mosaics. I have enough trouble with a 5,000 piece jigsaw :-)

Did I mention that the dreams were back?

It seems to be that the brain goes into overdrive just before an operation. I had a dreadful night's sleep last night and loads of strange dreams. None stick in my mind apart from the hanging in the woods the other day but these were just unreal things going on.

At work at the moment, just waiting to go out for a drink with friend and catch up on his news.

Contact from our on board party

It was nice that we had a nice bunch of people at our table on the cruise and one of them sent through some photos this evening so I have printed those off. Finally I get a photo of myself on holiday. The on board photographer took a few but they were pretty contrived things and not at all what I'd have liked and Mrs. F. no longer takes photos!!!

So a few of us on at our dining table and up in the night club. That's nice as at least I may have a few photos for my mother who likes that kind of thing.

It is a strange thing but I have almost completely turned myself off sentimentality now. It is most bizarre but it isn't important anymore to have photos of when I was younger or any of the history stuff that I treasured before BC. I watched a few old videos of the girls the other day and it did nothing other than upset me and whilst it was nice to see and remember those times it all seems like another world to me now. Some huge lump of my life got ripped out and thrown away when I got cancer. I hope that it is transitory and that all these things I have cluttering up the house and gathering dust - for that is what they actually do - make come back to mean something to me later on. Nostalgia not being what it used to be perhaps? :-)

When I say upset me - it actually means that I beat myself up about almost anything that I see. I wasn't a good father; I didn't spend enough time with my kids; dah de dah de dah.... You know anything to beat myself up and that, at the moment, is the way it is. If I do look back I find myself giving myself a hard time for drinking, smoking and all the other excesses of my youth and some of my adult life too. I argue with myself that this is what you do and that everyone smoked and all of this sort of thing and I blame myself for my situation and for not having achieved some sort of imaginary high ground that my mind tells me I should have done. It is a strange thing n'est pas that your brain which belongs to you actually comes out against you and beats you up with such painful thoughts and vicious accusations. My brain is far worse than any bully or masochist :-)

I'm not sure why any of this should be, it just struck me that the photos I have don't do anything for me like they used to. Almost as if the past is the past. Perhaps things have changed so much that what they old things represent isn't important anymore. If these things aren't important anymore, I still have to find what is important of course. That perhaps is the next part of the journey and one that will be made easier if the results are good after Friday's operation.

The answer I think is that I am important but I can't easily live with that. I can't easily accept that I am the centre of my own universe. My family and children are important - but they have all just proved they can go off on their own and even at a young age have planned, worked for and undertaken journeys and adventures of their own.

It goes back to the recent dreams (they have returned pre-operation - including the nasty ones) and my own review of what "value" I am now to my family unit? It is a wrestle with my own self belief and self confidence and it relates to where I am in terms of living, treatment and what has happened to me in just three years. I'm in no doubt that this is just another phase you go through when you survive BC. The old survivor syndrome and why did you spare me question?

A few days at work and then Friday beckons - I hope that my surgeon will once again be able to tell me that things look clear and that we can plan the next steps in my journey. That being the case I hope to drown my brain with beer (Thanks Homer) and start to sort my life out - it really can't be that complicated :-)

Well that was OK

I walked up and got seen as I walked in which was good. A quick new set of swabs, urine sample and it was on to having a laugh about my blood pressure which was good as I had measured before going at 131 over 85 with a heart rate of 82. They got me at 150 over 95 with heart rate of 108. But Audrey knows me and that's OK.


Doctor was great and all tests etc were OK so I go in on Friday. I was finished in less than 30 minutes. I think I ought to just get dropped off next time (if there is a next time) so that I am not quite so hot. It is a 20 minute walk at my normal speed but I did it slightly slower at 25 minutes. Even so, I was a little sweaty when I arrived.

It was a completely routine thing today. I knew exactly what to do and when to do it, the ECG machine behaved itself and I managed a couple of pints at the pub on the way home as a reward for having my blood test which, as regular readers may know, is not my favourite thing on the planet.

So all is now set for Friday. the Doctor said that I might go home straight afterwards. I said that if they managed that it would only be the second time and that the butcher who did me before meant I was catheterised overnight which had been a first. Hopefully he took note of my comments. I bet that they will let me go as it is Friday and it is about the only time with L's party that it would have been good for me to be in overnight :-)

Not long now

Do I walk up there or get a lift this time? Not sure but a slow walk may be useful. As long as I don't sprint up there and get all out of breath again! I can always walk back via the pub :-)

I just went to do the MRSA swab tests and the liquid that they suspended in has hardened so I cant get the swab into the tube!! So much for making things easier.... Doh!

Now I'm feeling a little bit deep breathy - exhaling long and hard. I don't suppose I'll ever get used to it, its just the way I am.

Further Images

This is St. Petersburg and the Church of the Spilled Blood built over the spot where Tsar Alexander was blown up by a terrorist. It is a truly remarkable place. The Photos just don't do the place justice - for some of the places the word awesome can be applied and almost made to work.... The Mosaic work inside and the stone marquetry are unbelievable.

The Countdown Begins

Not the Final Countdown I hope :-)

In a little over 4 hours I have to have my pre-assessment and Friday I have to go in late so that means an afternoon operation. Not sure a Friday is a great day to do it. One minor blessing is that L has her 16th Birthday party that day in the garden here and so at least I don't have to be around for that. Last year it was a nightmare to sort them out and get them out of the house/garden. Apparently she was none to pleased about the way I spoke to and ordered people out but then - it's my house and I don't take kindly to having to tell anyone more than three times what I expect them to do.

I'm reasonably calm at the moment however and I feel OK. Whilst I may not be looking forward to going in, I've managed to rationalise it in my mind and I suppose that I just have to accept that this has to be done to be absolutely certain that things are progressing well.

I remember being quite put out that it wasn't last time I had it done as I was certain that it was going to be the last operation and that I'd be having the flexible cystoscopy done. As it is I am having the rigid cystoscopy and so they have to knock you out for it.

I am hoping that if this is clear, the next steps will be to move onto that observation stage. At the moment they are checking because of the Atypia found last time. Better safe than sorry.

I also wonder if, because of my age, they are making sure that things are OK and also that I can probably handle yet another operation. I still can't remember how many this is - so perhaps I ought to tot them all up and stick them in some sort of league table so I can remember. Maybe I'll just do it when this lot are finished.

Another Photo - Alexander Nevsky Cathedral - Tallinn

Alexander Nevsky Cathedral is a rather nice Orthodox Church right up the top of the hill in Tallinn. Tallinn is a lovely place spoiled only by us tourists :-) it was Sunday, there was a service going on and being quiet isn't too much to ask out of respect. Unfortunately a number of our European cousins on their tourist bus trips didn't think so. People can be pretty rude sometimes.

As you can probably see from the photos so far - we did get some pretty good weather overall.

Limbo State

Tomorrow is the pre-assessment and I can't say that I particularly like it. So familiar am I with the nurses there that I have a swab kit here to pre do some of the tests for MRSA so I just need to hand those in.

I suppose it can't be helped that I am a little heavier than the last time I went in. Other than that I will just have to see what tomorrow brings. Friday just needs to be over and done with and I hope that by this time next week I will be able to be sitting here writing some good things about the procedure - unlike last time.

To tell the truth I have now forgotten how many times I have actually been into Hospital for biopsies and TURBTs - I think this makes 7 times but I'd need to go and check that out.

I'm trying to be balanced and tell myself that I'd have settled for going in every 6 months for the rest of my life if they cured me - that would make me shudder but you can probably see that the act of reminding myself that the treatment has been life-saving brings some perspective back to the situation. I forget (like most people do) that through all the horrible things that have gone on the undeniable truth is that I am here still, I am in good health (although not great health) and that I need to count myself privileged to be in a position that the next operation is to check that things are OK not to remove tumours or anything else worse than that.

I've been quite down this past week and pretty downbeat, pessimistic almost (and many who know me would realise that isn't my usual state). Today I'm in a different mindset and I'm beginning to think things through more - rationalise it all out and make sense of what is going on. I did get a bit of a shock when I daydreamed of going to the woods and saw a picture of myself hanging from a noose on a tree - that snapped me out as well. I hasten to add, it (suicide) doesn't enter into the equation but it was a vivid representation of the depth of last week's depression. If you are wondering, I wouldn't because of what it does to those who know or knew you and those who found you and all that sort of stuff. I can understand why but not why you would upset loads of people by doing it (train jumpers for example - and I saw one just the once and it did upset me too). Yes, a daydream and a warning painting - the brain is a complex thing.

I have to face facts sometimes that I'm working with the cards I've been dealt and worrying about things beyond my control. Worrying doesn't change things but it is so much part of the territory (the Doctors don't tell you about) that I should be getting used to it by now. In some ways, maybe I am that I can work it through and know that it is transitory in nature. The whole Cancer trip is a fairground ride where someone has tampered with the rails or half sawn through the wooden supports of the roller coaster you're on. To your Doctor it is a tumour to be removed, treatment and checking and best care for a cure or remission. if it is worse then there is no doubt a protocol to follow in terms of whether they have time and ability to slow or stop metastasis. They have a matter of fact approach whereas you have to live with the dread of the boogie man coming back all the time. Someone likened it to Post Traumatic Stress Disorder and along with the massive fatigue that can also bring is the constant worry that something is about to happen to you. On a tour of duty service personnel have huge amounts of stress for long periods - whether they'll take a bullet, an IED or die, every hour or every day for the whole tour of duty. In Cancer it is that every twinge, anything out of the ordinary any slight change is a return of the cancer. There is always the worry that it will come back and that it will come back and get you next time. Your brain doesn't help you with this, it just adds fuel to that particular line of thought and makes things worse unless you spend time equalising out and in almost a right hand, left hand brain way think through the whole thing.

It is funny that last week wasn't "The Black Dog" I described earlier or even its puppy :-) It was just an uneasy state of being "stuck in a rut" or if "I hadn't got cancer?" or perhaps a bit of the old self-pity or the down after the holiday and returning to work. Who knows. Cancer just amplifies this and I it plays on your own fears and it magnifies them.

It is a nice sunny day outside, as usual it looks as if I am the only one in the house and so I will set up outside with a radio (Test Match is on) and a shade and have a relaxing day.

I do have my health and I have family, job and yada yada so I ought to be thankful that I have those.

Another Photo - Our Cruise Ship

A nice enough Ship P&O Artemis. At 25 she shows some signs of age but is a bit like an old pair of worn in faded jeans - comfortable and familiar.

I thought I could take photos

We did the family photos - not mine just A's and L's photos. They both had a great time and L's shots of Argentina are amazing. A's Venice and Rome ones were also quite stunning. We didn't have time for mine but as my photos amount to theirs combined - over 1,800 photos and the best part of 2 hours video it would be a bit too much just for one sitting. Tomorrow maybe.

Kind of dreading this time next week - I'll no doubt be stuck in Hospital overnight - I do hope though that this time it is in the Urology ward where they actually know how to look after you!

TGIF

Just got home and will be spending quality time (as they say) with L to hear her stories of Argentina, Paraguay and Brazil. I just glimpsed some of the photos and it looks to have been a brilliant trip.

Work was a bit hectic. The Boss's one day back and everyone wanted a piece of him. I got in early but he is off for 3 weeks to Canada. I have my own worries with the pre-assess on Monday and the operation this time next week. I don't feel good about this one at all and I think that I've already touched on why that should be.

Anyway, at least I can look forward to a warm weekend so they say and perhaps we can get the barbecue out and we might even drag my screen and projector outside and have an open air movie of our holiday slides and videos :-)

Plane has arrived at Heathrow

Just waiting to get the call and I will order the take away Chinese which L has ordered along with being me with a Yorkie Bar (a large UK chocolate bar advertised as "not for girls").

I got home a bit early and have set up the kitchen ready and am tracking the flight. Very much looking forward to seeing her as it has to be the longest time apart any of us have ever had.

L comes back from Argentina

In about 18 hours time. I am really looking forward to seeing her. I do miss her - she is so funny and so "off the wall" - I don't know where she gets it from.

I'm so proud/pleased etc. I just want to hear about everything she has done and to reinforce in her mind that she did this almost entirely herself - she raised almost every penny/cent and I am hoping that it will be a real life changing experience for her. We will have a big party tomorrow night and unfortunately I need to be in work the next day as it is the only day the boss is in!

I imagine she will sleep the whole of Friday anyway and so we can have a great family weekend and just listen to her adventures.

Nice night out

At the Jazz evening. Been going since 1988 so a bit of an old hand. I'm still the youngest one there though :-)

Feeling kind of maudling at the moment and just not my normal happy go lucky self. Sure it will change once all the crap is out of the way.

Guess what? My PC which was terminal I thought - is back with me and working. How cool is that? The PC man tested everything and it all worked, which is biz are as when I did that everything was dead. Anyway, glad to have that back and my car which cost a king's ransom to sort out this time. I suppose at 6 years old it needed all it brakes, tyres and bushes sorted. It is now looking like a real cat as it sits glistening on my driveway - Grrrrr!

Well there's your problem

On the way in to work it struck me that I really quite resent having my life changed and it adds to some of the reasons I'm currently unhappy.

Before BC I was on 4 times the money and every day was a challenge; I had responsibility and autonomy and status. Now I don't have any of those or, perhaps it is more accurate to say, I don't realise if I have any of those. I think I might have respect/status but the problem with taking a job lower down the food chain is that it doesn't push or challenge and it has now got to be routine - which I think is a better word than mundane. I easily exceed expectations as expectations are set for someone at the beginning of their career, not with a 1,000 year's knowledge and experience like me :-)

Getting up and going to work is mechanical and not exciting although I enjoy the people. It is funny that I'm feeling this at a time when, if everything is clear, I will be able to negotiate a permanent role. I suppose in this day and age having a permanent job can be looked on as a good thing.

Anyway, so I've pinned down one of my current issues. I know the other one is just reeling from having to go in for full biopsies again and realising that I will have to continue this sort of thing for whole of life, it isn't going away - or isn't likely to in the next several years.

Perhaps there is also the uncertainty about what they'll find - it has been 8 months since the last operation and I've had no maintenance since that time...

A combination of things then but it is all about coming back to the reality of what you have - a manageable acute disease that can recur when you least expect it.

Occasional Images of the holiday

CLICK on the image to make it much larger.

Why not I thought put a few images up. this one is pretty damn spooky. In Copenhagen we looked over by a bridge and saw these statues staring out of the water at us. I hope you can see them - oh for a filter to be at hand but, of course, A has all my lenses and filters :-)

Doom and Gloom Mood continues

Actually it was lightened a little as some more of my colleagues were in today and so that lightened me up a bit. I realised that I didn't actually tell them that I was due in next week - I'll tell them tomorrow.

We are getting ready for L to return on Thursday night. My car got serviced today and at close to £1K for the work needed I might need to start thinking about my little luxury :-) however, Mrs. F. is going off to Heathrow on Thursday to pick her and her friend up so there will be a massive welcome home for her then. I have to go to work on Friday which is a nuisance but I reckon L will sleep for 24 hours anyway so we have the whole weekend.

I can't say that I am looking forward to the next few weeks. Perhaps it may be the last invasive work on me, perhaps it wont, we will have to wait and see the results.

there was a series of programmes on last night about Cancer - very interesting and I'm getting my head back around the fact that as ordinary as I appear and as much as I'd like this all to go away, it isn't going away and it will come back at decreasing frequencies (I hope) for the rest of my life.

You don't really understand that as you hope that you'll just get discharged and that will be it. It may be with some cancers but not, it seems, with bladder cancer at the level I had anyway.

I'll see if I lighten up a bit more tomorrow. At least it is Jazz night tomorrow and I will enjoy going to that and spending some time with my friends.

Funny mood

I've been in a funny old mood for a couple of days now. I'm not sure I understand all the reasons why - I can guess that it is a combination of things and I'm sure it is coming back to "routine" and I really don't do routine at all well. I couldn't hack a job that was the same day in and day out. This job has got a bit "samey" now and I suppose from being someone that had to walk into everyday and tackle whatever turned up, this can get quite dreary and like walking through treacle to get something done that, frankly, should only take a few hours.

I'm neither one thing or the other at the moment and it isn't depression although it is close, it is perhaps coming back to normality and the day to day trudge of life. Things just go on much the same everyday and it would be nice for it to be different occasionally.

No one likes an Operation

Least of all me. Not my usual cheery self today at all at work. Was a bit grumpy and a bit annoyed with just about everything really. Annoyed with the stuff left on my desk; annoyed that I feel not so great about my holiday and annoyed that I have to go in for a full blown operation and the needles and the other baggage that goes with the territory. I can see how some people just give up and finally refuse treatments and so on.


Interestingly enough, I just haven't convinced myself this time that this is necessary. I thought that the December Operation was it and that all would be over and every time something happened to me, I convinced myself that it would be the last time that I needed to have a cannula in my hand, go to theatre, wake up from a strange sleep, argue with the nurses about my inability to walk around a ward when I was connected to the bed and all the other "fun" things that happened to me last time. At each stage, it was my defence mechanism. This is the last time you'll need to do this or that I'd tell myself.


Obviously not then!


Oh well, I'm tired and I need to get some sleep. A has heard from L that she is alright and relaxing back in Buenos Aires ready to come home later this week. Goodness she has been away a whole month.


Talking to A tonight was interesting, it appears that she was one of only a very few who got Distinction in her exam. Some only got passes and there were very few merits awarded either. She really does work very hard and just looking at her notes and research you can see how much effort went into the project at the end. Good on her. It looks as if she has got her place secured and will travel up from here every day. Good on her I say.

The wake up call

The brain is great at forgetting things and also I have that sort of personality that throws bad experiences away and moves on. Enough sh1t happens that you need to dump it and move on. I'm relatively lucky to be able to do that and once it has happened and is over and the short term disappointment or whatever other experience I had is thrown away and only referred to when needed.

I'm just feeling a bit down at the moment as I know what is coming and I just need to get over this phase which looks at the downsides of what is coming. The upside should be that the results will prove where we go next. The positive side could be that this will be the last operation and that I'll go onto the challenging but probably better flexible cystoscopy...

In the overall scheme of things, I just have to go through this operation and then see what happens next. I forget, or I quickly forget, the fact that I have had a very serious condition and this is the territory. This is all for my own good but it still isn't great and it isn't something you'd choose to do.

So there you go - it is, I suppose, the shock of coming back off of holiday and finding the letter there telling you when you are going to get done.

Feeling quite low

Probably as a result of coming back from holiday, realising that the operation is less than 2 weeks away and remembering the mess I was in last time. Then there is the perennial "what am I doing?" question coming along. I'm back on my mid life crisis stuff. You know the sort of thing, "surely there is something I should be doing?" "Why am I not happy with things the way they are?" There just seems to be a cycle to this which at the moment finds me in depressed mood. I'm also going through the everything is cancer phase again. There is a small swelling in my mouth, some of my moles look dark, I had a bit of a cough the other day, my throat feels dry. Everyone of them is cancer but probably aren't. You just react to every little thing like that and yet I'm in good enough health really. I think it is just a phase again and the pattern is much like this as I get highs and lows all the time.

I don't consider myself to be a hypochondriac but just recently I've been given to this train of thought. Of course it is now well over 3 years since the first operation and my goodness how time has flown and how things have progressed on since then. I had the funniest moment on the ship when someone mentioned getting off at Tallinn and visiting the cigar bar. I almost felt like going along and sitting there and lighting one up as if to defy the cancer gods and sneer at them. What a bizarre thought.

I do hope I snap out of my current malaise. I really don't care to want to go to work or do anything at the moment and when I'm like this I am at my most destructive as I don't tend to do what I'm good at and that is think logically and measure my thoughts and actions. I am likely to go and do something stupid like quit my job or bark at someone.

Off to bed now and hope to shake this apathy for tomorrow.

Tired from all that walking

For the second day we have laid in and got up late. No problems with that - but pretty much as we felt that the holiday was going to be quite exhausting even though they missed two ports. I note that they also managed to do that on the previous cruise too. Some can't be helped due to the weather but a mechanical breakdown meant that in reality out holiday didn't actually have an end point and so was left in limbo. Unfortunately the people at P&O don't have that sort of mindset and the poor old Captain was left without much to calm down the passengers.

Some of the dyed in the wool types who actually haven't been on any other holiday or with any other company thought this was a reasonable stance - we missing 25% of the ports we were expecting to see didn't. Some poor soul was actually due to get off at Gothenburg but ended up trapped on the ship like we were. Mind you at least they were compensated properly and were able to fly back there. We had hardly enough compensation to get us to the airport. I still await a response to my complaint that I made on board. However, given their inability to inform us of anything in a half decent manner I'm not holding my breath on that.

It makes it sound like a bad experience which it wasn't really but we were amazed that they were so unprepared for something that appears to happen quite regularly with P&O. It was that their customer service and communication stank. I thought their strap line "Everyday is different" was a load of bollocks especially when stuck on the ship for 2 days longer than you planned to be as everyday was "the same".

I can't say that I am particularly looking forward to getting back to work on Monday or to getting myself prepared for the next lot of biopsies given the awful experience I had last time. I think I'll make the point this time when I go and see the pre-assessment people.