Testing my sense of humour

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

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

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

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

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

Well there's your problem

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

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

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

High Profile Deaths

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

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

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

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

Work from home

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

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

Back in the land of the living

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

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

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

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

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

Watch this space I guess.

How quickly the body/mind forgets

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

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

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

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

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

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

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

Getting ready

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

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

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

Crazy work day

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

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

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

What a Day

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

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

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

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

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

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

Whew clearing up

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

Not a good start to the morning

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

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

No News is

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

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

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

Fed up sort of day

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

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

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

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

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

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

A day on my own

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

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

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

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

Only a 4 day week

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

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

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

FANTASTIC News for Steve

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

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

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

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

Steve's Judgment Day

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

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

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

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

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

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

Nothing like a show of blood to get my attention

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

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

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

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

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

Back to work tomorrow

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

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

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

What am I doing here?

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

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

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