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.