Tuesday, October 20, 2009
Injustice
I can't say that I've been a perfect specimen of the species but I have always tried to be honest and true to my beliefs. I wonder what these annoying, cheating, thieving, lying toerags will have to say for themselves, perhaps they will continue to deny that they had ever done anything wrong.
BTW - I'm not that good - I doubt that Mother Teresa will have to move off the bench for someone like me :-)
A Day Off Tomorrow
Work is beginning to get irritating and so many things these days appear to me to be bland and irrelevant. I find most things these days just trivial and inconsequential and if there is a positive side to having had cancer it is that most other things that may have been "important" really aren't when you boil them down. I tolerate most people, I get on with them and yet I'd really love to ask them why on earth they are miserable and sad and whinging when there is a lot to be thankful for just being alive.
It seems to me that you should enjoy the experience and the sensations and yet so many people don't. There was an interesting programme on TV tonight http://news.bbc.co.uk/1/hi/health/8314093.stm all about what makes me, 'me'? There were a few bits that threw me but it was an interesting look into consciousness and I wondered whether having had a critical illness that you become more reflective and more aware and indeed more questioning about yourself, your faith and your confidence and a host of other such things.
I suppose that I might be a bit different to a lot of people anyway in that I do a lot of reflecting and thinking and I don't just get on with things or let things happen. I wonder if I have become a "better person" if there can be such a thing? I feel that I probably have and that maybe only those near enough to me will have seen the change. I know Mrs. F. thinks I've changed. I can't say that it has done me many favours though in some areas and some relationships have fallen apart and some have blossomed and my temperament is so much better. I probably get angry these days but mainly with fools and people who should know better, jobsworths especially hack me off but overall, I am a gentler and more sympathetic person I like to think.
And as Samuel Pepys would say - and so to bed. Tomorrow I hope to catch up on some more paperwork and see if I can get some of this desk tidied up.
One of "those" Days
Another Monday and people's lives everywhere playing out in the way that they do. Where I work in a charity I am always amazed at how those who have money ask to be assisted and those who don't and could do with our help are too proud to ask. Funny old world and a disturbing fact of life. Those who know how to play the system can get an awful lot out of it. Those who desperately need assistance cannot get to it through denial in some cases and inability to articulate their need.
Life is bloody unfair sometimes and it can make you quite angry. I''m really annoyed that one of my colleagues has an angry letter from someone that is bang out of order. It is rude, callously composed, personal and untrue. What can we do about it? Not a lot - the author believes he has a case to go to law and that will be fun indeed. They wont let me go around with a small baseball bat and explain the facts of life to him. He actually stole money from us and when we found out and stopped it, is making my people's lives intolerable through his dishonesty.
Selfishness like that makes my blood boil and no matter what problems he may have - and I think you can probably guess what they are - you don't need to bite the hand that fed you when in fact you are clearly in the wrong and got caught out. I thought it even more amusing that the guy played the Big C card. Well let me come and talk to you about the Big C matey and let's compare notes about it - I'm sure you can tell me why it makes it alright when you have the Big C to go around slagging everyone off and making fraudulent claims! So, when I calm down :-) it might be worth saying that no one took my offer up for me to go and see him or to even chat to him. A shame in my view I really want to face out one of these cowardly ignorant people and just give them a complete broadside. it will do no good as they are generally so ignorant it takes them a couple of years afterwards for them to realise that you've insulted them.
To add to my bad day my Chairman has also managed to p*ss me right off with some transactional analysis nonsense he wants to play through my committee. I'm not having any of it.
So finally I boil down to the worry and that is I am getting too like my old self. I've been here over 18 months now and I'm getting back to my cut loose ways that I used to have in my old job. I really don't do fools, jobsworths and the like and I am surrounded with incompetents, amoeba and other soap dodging, Politically Correct liberal wet good for nothings that in a short period of time I will explode and explain just what a waste of O2 these people are and how Darwin missed out a whole sub species that will never evolve but will continue to maintain their leech like qualities forever.
Other than that - it hasn't been such a bad day.
Sunday, October 18, 2009
I Keep Banging on about being tired
Friday, October 16, 2009
Zombie Day
I have done so much work this week - I am looking forward now to a reasonably quiet time so that I can recover.
Wipe Out
I am absolutely shattered and need to get to bed and then go to work somewhat dressed down to go and clean the place up! It appears to have all gone down well. Let's hope so.
Wednesday, October 14, 2009
Like a hole in the head
Now - everyone knew that it wasn't a good day, that I couldn't make the meeting without a LOT of difficulty but they went a head anyway and they realised that as I was running this huge event that none of the usual rooms would be available - as I am using 4 rooms for the event.
Given that they've had 6 (yes six) weeks to organise this it doesn't bode well for this team binding together to get things done on time which is what the meeting is about really. I hope I get there in a half decent frame of mind!
Whew - what a day - setting up the conference and syndicate rooms the food, the exhibition areas and my "bosses" changing the slides at the last minute after I've printed out the handouts and after the delegates have gotten their packs.
So - tomorrow - the big day - I've got the best punchlines but I haven't got the key note speech this year :-( just some statistics and figures which I hope will be just what is needed. Other than that my job is to "drive" the IT all day long.
Tuesday, October 13, 2009
Luxuriate in my wording
Nice words:
"I saw Mr. Ferdinando in the clinic today. I am happy to say his recent bladder biopsies showed no evidence of malignancy or carcinoma in situ. He remains well and had no problems post operatively. We will continue to monitor his bladder and I will arrange to see him in six months for a general anaesthetic cystoscopy and biopsy with urine cytology beforehand. Yours sincerely etc"
I am reminded of the words in the film Blazing Saddles where Taggart says to Hedley Lamarr after a particularly interesting soliloquy where he said "My mind is a raging torrent, flooded with rivulets of thought cascading into a waterfall of creative alternatives." Taggart then says "God darnit, Mr. Lamarr, you use your tongue prettier than a twenty dollar whore. "
I have no idea why that drifted into my mind at all but there you go randomness is as randomness does.
Monday, October 12, 2009
You did what? You used your own initiative!!!
I was asked to make a reporting framework so that everyone reported the same and I could do some analysis. In fact most of the people who asked me were those sending data in. I spent a long time doing that, designing the input forms, preparing the presentation slides and ensuring that there was a level playing field for all. Not only did these guys get the stuff in late they completely changed the way the figures are reported and totally screwed the data set!
Thanks guys - no - don't worry it only means hours more work for me to put it right - no go on - sit on your arses whilst I do it for you.
I'm less than amused with just a few days left to go and all the other spanners thrown in the works, the last minute minor changes that will mean there is bound to be a cock up on Thursday. 11 months I've been working on this and three days before the day they want to change their bloody minds! It surely can't be me can it?
Rant over!
Tired, Tired, Tired, ZZZzzzzzzzzzzz
It is probably the biggest single difference I can say that I have physically wrong with me (YES - I know my head is pretty damned screwed up). :-)
Whilst I am out of condition I feel I can now spend some time getting myself back to a level of fitness and weight that I am comfortable with. I just need to work out some sort of schedule in a life that isn't particularly good at fitting around a schedule. I could do with a few months free of working up in town and just concentrating on perhaps training every day and making sure I get out and about in the fresh air rather than on over heated trains and in airless offices.
I'm not particularly upset about the tiredness but I do notice it as it invades so much of my time and now - when I should be in bed I'm here wide awake which messes up my sleep patterns and throws the rest of the week out.
Luckily this week sees an end to the full on effort I've been involved with and takes me into a slowing down period towards Christmas. i have a lot of holiday available which I ought to take so I did a schedule today to find that I haven't actually got one week that doesn't have me doing something in it.
As for my mental state - I'm sort of neutral at the moment. I haven't had a disturbed night of strange dreams and what ifs for a little while and whilst I'm still not certain what I want to be doing with myself for the future, some of the immediacy of the want to decide has gone away and I'm content for the moment. I'm sure that will change as I have a meeting later this week on my other business venture which may dictate the way the future will pan out.
Saturday, October 10, 2009
Nice - Pleased about that
I've spent a lot of the day sorting out my stuff and have only just realised that on Tuesday I need to have my accounts ready and they are just lying here in bits at the moment - oops. Tomorrow will have to do for them.
It is the beginning of a very busy week for me and I'm hoping to get through this and just relax a bit afterwards. There is a pretty heavy Lodge meeting coming up in a few weeks time that I need to keep an eye on but other than that I should be able to start to settle down as the rush will be over until the New Year. As someone reminded me yesterday - it is only 11 weeks to Christmas. I couldn't even begin to tell you where this year has gone!
Friday, October 09, 2009
Poor Brain and other Dilemmas
Work was OK and I got on and was happy to get the day out of the way.
I got home to find an email from someone I know and who is also one of our volunteers at the charity. He has been operated on for Bladder Cancer and had a pretty hard time of it. I've offered whatever help I can give to him as I think he could do with a bit of support and seeing a survivor. he knows me although we are good acquaintances not friends. He says he will soon go on Chemo so I'll check that out and see.
On my brain - well it can't have escaped your notice that I'm pretty much unsettled at the moment. I have a potential opportunity coming up that should excite and motivate me but will mean leaving or altering my current job. I'm so under utilised in the job that I am in that it wouldn't be a problem to move on or to perhaps split my time accordingly.
I can't quite get to the bottom of exactly what it is that is troubling me, it is the whole thing not a single area to put your finger on. I'm not depressed and neither do I feel the need for seeing a shrink either as it isn't (or I think it isn't) the sort of thing that warrants that. It is some massive jigsaw puzzle of cause and effect scenarios to work through each action having some other knock on effect on some other part of the problem. The solutions vary from the simple to the hideously complicated, the plans from the weird to the just plain off the wall, the various scenarios for what I could be doing with the "opportunity" I have and the experiences I have been thorough play around in my head all the time.
I really don't know what I want and to rely on serendipity isn't my style it needs to be planned and considered and tested and then executed.
Thursday, October 08, 2009
Oh boy - one of those days
Wednesday, October 07, 2009
What a difference a day makes
You may perceive that I feel 100% better than I was yesterday and almost my old strange peculiar self! Yowsa.
I had a good evening but my friend is looking very old now and perhaps rather than him giving me a lift home I should be giving him a lift there and back! He is 80 after all!
I'm beginning to formulate a plan to take myself forward from here and I reckon the thing that holds me back all the time is I test in my own mind about the impact my actions will have on others around me. Every time I per-mutate the odds and the different ways things could pan out if I made this or that decision. I'm not quite as worried about what people think about me as I used to be but I temper all decisions with that very criteria and acid test.
You see - going through my mind is to take myself off (on my own) for a week or two and "test" myself. Do I really want to walk away from here and go off and do something radical? Do I want to try and reengage with my family and friends. Am I living the life I really want to? Did I choose a life that I now regret and just want to change? And so on and so on go the questions bouncing about in my head. It is a constant assailing of my senses and there are no right or wrong answers nor logic to the way that the questions materialise and affect the way my next pattern of thoughts and plans are formulated.
It seems that I am just open to all ideas and all avenues of thought and action at the moment. I think I need to explore them all the sane and the insane, the logical and illogical, the bright and the dim, the planned and the unplanned serendipitous.
I am toying with the idea of taking myself off for a week or two - I have no idea where - to go and find myself. I'm a "late 50s" child so don't have the "benefit" of any drugs or alcohol background to play on my mind. I do have a brain that is constantly giving me grief about survival, normality and the nagging question of "Just what do you want to do with your life?" thrashing away in my mind many times a day.
Given that so much is going on in my head all the time, I find it very difficult to imagine that any deliberations are going to want me to settle back down to the Status Quo prior to Bladder Cancer.
I always thought I knew the answer and yet I find that it is still too difficult to look at straight in the eyes and to do what is right for everyone. To do what is right for me and me alone seems to be self centred and selfish to say the least and yet, by doing the ting that appears to be the most selfish and hurtful may it in the long run be the right thing to do? the short term hurt can be worked through. To continue the way I am going cannot be good for those around me in general or myself in particular.
I fear the collateral damage that bladder Cancer has dealt out so far and will (more so I have no doubt) into the future. It may be an inevitability of how my past was built that will be the undoing of the past but it may lead to a new future. I dread the collateral to other people and not to myself.
Cancer ripped up my rule book and threw away the index. All that I built and saved for was torn apart in short order. Things - material things - aren't so important really, if the house had burnt to the ground but everyone had escaped then that would have been a result. Life - not things - is important. I get that, I want to live a different life (or I dream I do). I don't live a different life because domestics haven't changed as I have changed, they have been constant (and may have needed to be so to continue "normal" house whilst I was ill). Now the house is the same as it was before BC and to me, nothing has changed but I most certainly have.
It is all a big heap of dung at the moment and whilst I'm enjoying life, am back to my old happy go lucky self and all that good stuff, I feel incomplete, a huge piece is missing and the next part of the journey is to discover (or rediscover) what the spark was or is, will be or what I want it to be. The brain nags me that I haven't gotten away with this, that it is going to come back and "get me" and that I had better live this next 10 or 15 years that I may have to the full. Only those that want to come along will come along. I know that many will not want to. That is my dilemma.
Off to my Jazz Night
I hope to get a few beers down my neck and enjoy some trad Jazz prior to returning to the mad house at work tomorrow.
The alarm
Luckily I can work from home and I have plenty to get on with. My sense of humour might need a day to be repaired though. It does get me quite angry when no one actually makes a decision and sticks to it. Not my style. Sure, find something that doesn't work and change your mind but as usual, we spent hours in pedantic semantics and ended up with exactly the same message but worded in a different way.
It is my Dad's birthday today - I need to give him a call. It is also Jazz night and I'm looking forward to going to that and having a few beers and some good honest entertainment from talented musicians.
Tomorrow, as they say, is another day. All hell breaks loose this next week as we run up to one of our major events of the year that somehow, I have ended up arranging and organising. It isn't my job to do it but somehow I have inherited it. I've been trying to get the guy who owns it to actually own it. He doesn't and I'm worried he will seriously affect his job by not doing it and me doing it for him but I can't get him to see it by being subtle. He has even told me that I'm best suited to the Job (which IS true) but you can delegate the tasks but not the responsibility. Bless the lot of them, there aren't too many "managers" in the place and so maybe they don't know what I'm on about.
Well - I suppose I ought to go and do some work.
The Girls at work
The train journey was a laugh this morning as all the lights went out and stayed out so we couldn't read our newspapers - a very strange experience.
I've definitely gone over and beyond the call of duty today though and I hope that they appreciate it. Mind you I couldn't believe the committee changing everything with just a week to go. Unfortunately I wasn't at my normal temperate and joyful self on a couple of occasions and told them so. The trouble with a committee of more than one is that they wish to discuss it. The Roman conquest did not have meetings and networking events they killed anyone who disagreed with them. I cannot imagine that being quite that radical will work with my people though!
Monday, October 05, 2009
Working out
Your faith
Your family
Your lifestyle
Your ambitions
Your friends
Your location
Your social life
Your hobbies and pastimes
Your real needs
Your dreams
Your desires
Your attitude
Your risk profile
Just a few of the things that are churning around in my head. It is interesting to jot these down and think to yourself how important things are to you now and before and how they will be in the future.
Silly things like I used to like cooking but I barely do that now
I can draw and paint I don't do that now
I can play piano, guitar and trumpet and have those here - I don't play them now
I like music but I on;y have that on in my MP3 Player going to and from work and at the Hospital
I used to like family History and I hardly do any of that now
I read books but nowhere near as prolifically as I used to
It worries me that these are just a few things that I realised that since BC I no longer actually do. My piano, guitar and trumpet all gather dust and I'm just no longer interested in things that used to be my hobbies. Worse than that, it isn't important to me anymore even though I strongly believe I should go back to doing them. My photography is restricted to holidays only now as is my video camera. I no longer enjoy driving although I do have a nice car to drive around in.
This is why I am searching out what has changed and trying to understand why I no longer do these things. Nothing really replaces these but I don't seem to have much time to myself. perhaps a bit of Parkinson's Law creeping in and me filling the available time.
I was considering what I might like for Christmas (Well A has asked me for a list as she needs to save up - she is a planner like me) and I could hardly think of anything I actually want. material things now don't mean that much. It seems strange to me at the moment to go out and see something that I actually want to buy and own.
I used to love cooking and these days I just don't enjoy doing it or just don't do it.
My faith took a severe pounding as I don't get the "Why?" bit at the moment nor do I understand how it can be a test either as some say. Maybe that answer will materialise during my deliberations on what it means to survive. Who knows?
It sounds all doom and gloom but I'm not like that at all. Somewhere there is a nagging in my head that is looking for reasons and for piecing together all that I've learnt this past 3 years. You know that everything has changed but outside of my reality, perhaps it hasn't changed at all? My family hasn't seen any changes or have they had to make too many. No one has said that "you don't cook anymore" or anything like that - I doubt it was really noticed by them.
It is the other dimension to Cancer and the way it messes with your head. You want to go and tell people you are special and share your insight but only a few people are genuinely interested. You want to change the world but you don't know where to start. You'd like to escape and run away but you are frightened that you'll lose your friends and your family and die a lonely man.
I've been trying to figure a lot of this out for a long time and I'm gradually getting to the point where parts of the jigsaw are coming together. All the pieces are sorted out but I don't have the picture on the box to help me put it all together.
I hope that I do work it out soon as the list of tings I used to like doing but do no more is growing and it isn't being replaced by anything.
Fighting a cold
I'm wondering whether I take myself off somewhere for a while and just work on what I want to do and where I go from here. No one seems to have the same time off, A has different term times to L and Mrs. F. which also clash with things I am doing so perhaps I will see if I can go somewhere and chill out for a while.
I need to sort out my diary to do that of course because I have loads of meetings and things already penciled in.
I hope to get back to work tomorrow if I can get rid of this cough and sneezing cold.
Reflecting on being clear again
- Less likely to get a recurrence
- More likely to continue to be clear
- Moving further away from the horrible stuff that happened to me
- Gradually getting my strength back and repairing my body
- Able to plan a bit further in to the future
- Less plagued by dark thoughts and self doubt
- Building some optimism for the future
I'm still getting to grips with:
- Being quite fragile when it comes to emotional stuff on films and TV
- Getting or feeling angry at people who are self centred and selfish
- What on earth I want to do with what bit of my life remains both professionally and personally
- How I feel about myself
It was interesting to see "how I feel about myself" being on the list because I recognise that I don't feel particularly good about myself at the moment - it is one of those things that you deal with a lot with staff and you need to be sure that they feel good about themselves but also that they feel good about their colleagues or you can get problems.
My low self esteem is really about not having worked in a "real" job for the past two and a half years. I've been 18 months in this job and was messing around for about a year with the lame brained one. It just doesn't feel that I have done much whilst I have been ill and not really been anything other than looking after my own sorry arse. The family are provided for which is a blessing, at least I got that right and had insurance in place for a living death.
I'm just not terribly satisfied with my current life, my current job and many other aspects of my life. I think that it is all part of a major reevaluation you go through when you have a chronic illness. Some probably come to terms with it really quickly or pragmatically argue that it is just something to deal with, get over it and move on. In my mind it is far from that. What sticks in my mind are the regrets and the decisions I took when I was younger that "may" have contributed to where I am now. Like working quite so hard, smoking all those years ago and that sort of stuff. I used to work really hard and drive myself to do a great job. Did it actually achieve anything? Am I reaping the excesses of my youth?
It is a strange dilemma. Someone hands your life back to you after you had been threatened with the alternatives. You get it back, not in quite the same shape your remember it and suddenly you have to decide whether to keep on with the same old same old which you were leading up until the time of diagnosis or go and do something different.
The older you get the more ties hold you in one place. Friends, clubs and organisations, work children, school, their friends and so on all tie you down. I'd be tempted to move further out into the country or to the coast or abroad but that probably isn't going to happen. There is an underlying need to make the most of this "opportunity" but as already discussed on this blog site, there is the fact that the only person likely to feel that way is me, no one else lived through this and what it did to me. Their experiences are likely to be very different and apart from some changes that they have noticed (I'm much more laid back than I used to be) they probably wont understand the desire to make some sort of change. I just wish I knew quite what that change actually was or is!
Stupid Cold
Bugger it, I really didn't need this and I'm off work - well no one would thank me for catching this. I am trying to do some work at my desk but with little effect really.
I am drugging myself up as I have a meeting I should be in tomorrow. The trouble is, if I am anything like this I will just have to miss it as I don't want to stick them in a meeting room with me coughing and sneezing all over them.
So it has sort of put the kibosh on doing anything for a day or so as I do feel pretty rough at the moment.
Sunday, October 04, 2009
Great a cold
That's the trouble going into hospital - it's full of sick people. If they put ordinary fit people in there it would be better.
I really could do without this right now though. I've got to make a decision whether I go to work tomorrow if I'm like this as I'll give it to everyone else and wont be popular at all.
Bloody typical, I'm not amused - as you can tell.
A new day has dawned
I am still pretty neutral over yesterday's result which surprises me still, I thought maybe I'd lighten up overnight or realise how good it is or something like that but - obviously not :-)
I've all day to get myself excited I suppose! Actually I have a load of things to do like stuffing envelopes and sticking stamps on - whoopee! At least I wont have to do it for too long as good old (some say) Flocky Bicep will be take over from me this time next year and have a go at this - it will be a reward for some of his more risque comments :-)
So back to how do I feel and what do I want to do? I really just don't know - I'm just not reacting to it at all neither positive nor negative and somehow that in itself is OK and yet I am surprised by how calm I am. Oh well, I have all day to think about it.
Officially - I'm a Low Reactor
Clear of Cancer. I remember the first time I heard that being very emotional and quite shaky but that was tempered with the need for BCG follow up and maintenance.
In a way if I'd heard the word Remission or something similar then that may have caused a bit more of a celebration. To have to go through an operation once again next year is a bit of a blow but I'd rather do that and be sure than to have the half chance that something worse may have happened.
But don't get me wrong about what a major step this is, it is just that I'm not having a party to celebrate or any such thing. The threat of BC coming back is still very real and so a muted response is called for at the moment.
I was interested to hear from my friend last night though that he thought that this year I have started to look well, the strain is off of my face and the colour has returned. Many people have said I looked drawn and some said I look positively ill and grey when I got this and the few months afterwards.
I thought it was a surprising reaction of mine today I was all ready to party and do some deep thinking after this particular result. I think today I am feeling relief and maybe tomorrow I will be feeling a little more upbeat about things.
Saturday, October 03, 2009
All Clear
So all was clear and she remarked that it had been for some time. She wanted a 6 month appointment and toyed with the idea of a 6 month flexi or perhaps even a year but she felt that we should do 6 months, have full biopsies her "Gold Standard" and so a further rigid cystoscopy. They aren't fun but if that is what it has to be, that is what it has to be. Fed up with these? Sure but then it goes with the territory so I have to accept it.
We walked home and I had one beer as Mrs F was with me! I feel tired at the moment, I'm sure I have been in a high state of anxious anticipation and am falling asleep here typing this. I think I will wander downstairs and fall asleep there :-)
Friday, October 02, 2009
Let he who is without cast the first stone etc
You can't say anything without some smart arse coming up with some old twaddle about you shouldn't say this or do that. Heaven alone knows what makes these misinformed, misguided half wits mine, or anyone else, judges.
If I learnt just one thing in the recent past it was that life's short enough as it is without all this holier than thou cyber bullying. What I do enjoy is facing these do gooders down face-to-face as they wear a very thin veneer of respectability and are generally extremely sad and worthless people. I suppose somewhere there is a place that they fit into society but I find it extremely difficult to know exactly where that is. Even slime is life.
What brought that about? Just the constant attitude that anything exists to be pulled down and humiliated - it is a pretty sad fact of life that TV promulgates this behaviour and that people who should know better decide to copy it and think it is right.
Well I won the loudest shirt contest
Anyway, it was so bad that I daren't take my jacket off on the train in either direction :-)
The fun of it all. Anyway, charity benefited even if my colleagues eyes didn't.
I'm feeling quite good especially as my mate NC is coming over to pick me up and we are going to have a beer and a curry tonight. That's rather unexpected but nonetheless welcome. So I am looking forward to going out in the near future and tomorrow, of course, going to see my specialist to see what the outcome of the last lot of biopsies were. Fingers crossed!
I hope to be imbibing of a few more beers on the way home if the news is good.
Thursday, October 01, 2009
Mellow
The common denominator is that we are all similar people - not clones or identical fits - but we all have common moral beliefs and so it is ever so easy even for someone as introverted as I am - to get on and chat to someone as you can talk about anything and nothing and the "rules" and the "borders" of what we can and cannot discuss are part of the understanding we have. That is what is great. Later on I found out that this guy is really high up in the F1 community and he knows a lot of the top people and it was great to ask questions and hear about how F1 started and some of the people this guy knew.
I feel really charged and revitalised now because my friend invited me and because we had such a gas. It was a little cramped at the festive Board (banquet) but there were good reasons (post strike) and so everyone mucked in and got on with it. In fact it just made the evening go with a real swing.
Wednesday, September 30, 2009
People can be real arses sometimes
It is more unfortunate that I am not allowed to bring my baseball bat out of retirement and do my Charles Bronson bit in explaining to these people not only the error of their ways but the utter waste of time they cause us and the diversion of our good services into some amoeba brained, sub educated, mindless, self centred moron. Believe me, my list of adjectives and scorn have yet to be let loose like the torrent from a broken dam. What an arsehole. Mind you, we do get them and disturbingly regularly. If we could just round all these oxygen wasters up and throw them in the sea we could build a new continent and perhaps save the planet through them being stifled and not allowed to spout hot air. These people should get the hell out of our way and let us actually concentrate on those who need our assistance.
So - you can probably tell I was in a pretty foul mood today as my colleagues are all dedicated professionals for whom this is all in a days work. To me it is an utter afront and an attack on those who are there to help people in the darkest hours.
I was so tired today though and even though I had a long sleep I still awoke tired and had a sleep on the train in and out of work. I hope for a reasonable night's sleep tonight. Tomorrow I will be off to the Guildhall in the afternoon and I am looking forward to a really interesting meeting and to a nice meal and the odd glass of Champagne and Wine followed by a nice Port and some splendid cheese.
A got her Uni timetable today and was up for Fresher's week activities. It looks to be a different time and day each week and so will be challenging for her time management but I really hope she will enjoy the whole experience.
L is happy at 6th form and knows what she wants to do and knows what she has to achieve to get to the Universities of her choice. She wants to teach - an interesting profession, one that I would have enjoyed I think but after 10 or 15 years in industry. Good for her and there is a marked difference in her since she returned from Argentina. It wasn't a huge difference people told me there would be at the time because she is pretty bubbly and the funniest bundle of laughs. No, she has matured that little bit more and under all the usual is a determined and well thought through plan to get where she wants to go. She has got her job (well both have got jobs now) and she is doing well in that and the transition to 6th form discipline, no school uniform and subjects she actually wants to be doing has seen a big change in her in the past month.
Saturday is the BIG day and I am hopeful of a further clear outcome and for some good news on a change in the way things will go from here on in.
Tuesday, September 29, 2009
Couple of days to go
I'm still tired but I think I broke the back of the work that I was doing today and may well have done enough to ensure that I don't need to be "full on" for the next couple of days.
Monday, September 28, 2009
A hard day again
We now have this big do on the 15th October that I am preparing for and getting scripts and facts ready for all the participants. The weekend really did me some good though and I felt up for the challenge. Tonight we started our Monday night learning session - LOI or Lodge of Instruction starts now and goes to the 2nd Monday in May so I am pretty much booked out every Monday until then.
This Thursday I have again been invited to a rather splendid Lodge meeting in the Crypt of the Guildhall in the City of London. Last year it was a fantastic evening. I particularly like the champagne being poured as you come out of the Lodge and the wonderful feast of a meal we have there in the Crypt. One of my friends from the weekend away will be there for his first visit and I can only begin to imagine how much he will enjoy it. The Master happens to be one of the members of the Charity's Council so at least I will have something to say to him.
I'm feeling OK but I am not sure if I can keep this level of effort up for the next two or three weeks. It is going to be full on.
Saturday's appointment is looming and I am hopeful of a positive outcome. I have announced that I will be carrying some cash with me so that I can visit the pub(s) on the way home. Here's hoping that I DO spend some money then.
Sunday, September 27, 2009
Fatigue
6 days until I find out the results from my tests and I really hope that I will be able to celebrate continued good news.
It was great to get away for the weekend with the lads though. I hope that they enjoyed it as much as I did.
Saturday, September 26, 2009
Tired - I should be
It was very hot in the room we used and so we were all fighting to stay awake. The meal afterwards was really good and they had a brilliant cheese board especially one that had mustard seeds in it. I was home by about 11:30 and so have had a reasonable few hours sleep. I am off in 15 minutes to pick up my passengers and head off to Margate for the Annual Provincial Meeting. No work for me this year - the first time in 10 years and so I can just enjoy the meeting and have fun. Afterwards we will head back to the Hotel, check in and get changed and go off on the town :-) Not quite On The Town (New York, New York) style though!
Friday, September 25, 2009
Fun Weekend Starts in a few hours
We then travel back tonight and I guess get home gone midnight. I then have to get up and pick up the driver of today at 8 in the morning and take him and one other to Margate for a large Provincial meeting there. We are booked in at a Hotel overnight so that we can go out and taste the unusual nightlife of the area. KL and I have been a number of times and have had some of the funniest times.
Poor old Steve in the US had his BCG yesterday and got one of the rogue ones that get you every now and then with all the side effects. Getting hit by a Truck is definately what it feels like. This is the last of the series and in December he will have another poke and peek session to see how things have progressed. If clear, that signals NO BCG which I can assure you is a great relief to hear, even if you have to hear it by letter which I did! There's isn't a lot you can do other than lie down and drink plenty of water and let it take its course.
Another hour and a quarter and we will get going from here. Not sure if I fancy the journey but with three of us in the car it should go quickly enough.
That's different
Oh well, not too much to do in the next few days - Wales later today and back - a 5 or 6 hour round trip I guess and I'm driving to Margate on Saturday which will be fun. I am looking forward to that - it is always a good laugh. I can't believe that it is two years since I was last there though! But then it must be as last year we we were the banner Lodge and did all the hard work! Good grief time does flash by.
My laptop was not fixable but the hard drive has arrived in a new shiny case meaning that I can extract the files from it which I will have to do tomorrow and when I get back from the weekend. I hope to be able to pull off some of the finance files which were backed up but not in a way I can easily work out how to decrypt them!
Wednesday, September 23, 2009
That was a tough day
It is Council day tomorrow and I hope that I will get a little time with some of my committee to run through stuff. I have worked myself to a standstill today trying to get as much catch up done as I can. It is a crazy place to work at when they are still making changes right up to the last minute. They'd have been surprised if they had ever worked for me as all this would have been done months ago.
It is Steve's last BCG treatment for a while tomorrow and our best wishes for a low misery scale event.
I am off to Wales on Friday for a Lodge meeting where I am an officer who does some floor work for one of the ceremonies. You may recollect that we initiated a 94 year old at the last meeting. I will have the privilege of taking him around the Lodge (in his wheelchair) to do his 2nd Degree. It is a long old trek over there and back in a day and we probably wont get back until quite late, perhaps even the early hours of Saturday morning.
I pick up my colleagues at 8am on Saturday to go to Margate where we have a Provincial Meeting at the Winter Gardens. We are staying overnight on Saturday so that we can have a lads night out. Flocky, KL, GW and myself. KL and I have done this before and had just the greatest ball of laughs imaginable. As long as you take it for what it is then you should find that you have a good time.
I've been tipped the wink on a few more restaurants that may be OK. I am looking forward to an fun night out!
Tuesday, September 22, 2009
Losing your rudder
When I got bladder cancer I was pretty much at the top of my game in terms of taking what I had learnt from the industries I had worked in and then gone on to channel that into a pretty unique way of managing (not unique in terms of ways people manage but in terms of a suite of software that actually worked the way companies worked). I had years of experience, I could win work because people tend to buy people and I was setting out future plans and directions for a business that should have seen me retire having built it up to its rightful position. Unfortunately I got Bladder Cancer and then got made redundant.
I went and did something else then, totally out of character but it seemed a good idea at the time. Once I peeled away the thin layer of varnish I knew differently and then I set up the family history business which is still sitting in the back ground here and I've been working on my other start up venture in the background as well as working at the charity.
I'm as competent in my present job as I will ever need to be and having never been an operative doing the same thing year in year out, I am beginning to tire of that quite quickly. As these guys aren't dynamic, a lot of what I have as my core competencies will never be allowed to see the light of day but if they do, and a couple have, they will be someone else's idea.
I blogged about wanting or perhaps needing to get out of the Jet Stream life I was in before I had Cancer and I needed to as it would have been difficult to maintain my work rate given the issues I have had both those I knew I might have and those I actually had.
At the moment I just seem to be in the middle of nowhere. I'm not the industry leading, powerful, energy ball that I was and what I do now I know I will find will not interest me for much longer. I find 9 to 5 and commuting on the same train and same seat and seeing the same people is grinding away at me. I still enjoy the job but I can do so much better than this.
The crazy thing is, I don't know what I want and I've got a good 13 years to give to some industry or other. I don't fit into many organisations because I'm not trained to do that, I go in and fix tings, set them up properly and then walk away and into the next trouble spot. Damn, I miss that cut and thrust and then again, I think to myself that perhaps I just ought to take the pay and take things easy.
There isn't an answer to this at the moment, it is a quandary that I've had to live with since I got BC. There probably isn't a right answer. I know other people have an opinion but this job doesn't hold the responsibility or the opportunity to do much in the way of improving the organisation or myself for that matter.
Let's see what news I get on the 3rd October as that will probably help me to build some ideas.
A 2nd Day off
The symptoms are very much those expected of post cancer fatigue. The thing is there just isn't anything left in the tank. There's fuel and air and everything else but when you put your foot on the accelerator the engine hasn't got any power.
Reading up on it, it is all about hormone imbalances, problems with things like your adrenal gland and therefore not enough adrenaline when you need it and a whole batch of things that don't mean an awful lot to me. The answer is it takes time to get back these things and to be prepared for these odd days of fatigue.
I know it happens and I know I've had them before. I guess I could fight my way past these and go and try and get to work but who am I kidding? I couldn't get to sleep last night and when I did get to sleep it felt like a very short time until the alarm went and once again I couldn't get up and about.
I am just going to have to live with it. I do curse the fact that I cannot put in long hours and keep a sustained piece of work going. Then again, perhaps I wouldn't be in this situation if I hadn't been like that in my earlier years?
Monday, September 21, 2009
Fatigue again - where did that come from?
I don't feel a great deal better now at lunchtime and the headache is still here and the dizziness is slight, the tinnitus which is often part of my everyday life these days has ramped up and is quite loud and I feel completely out of it. I purposefully didn't do anything yesterday as I realised last week that I ought to take Friday off and preempt any of this fatigue feeling. The driving and a few late nights were ringing bells in my head (not the tinnitus other bells).
Also this morning my appointment for the Hospital has arrived. 3rd October. Yes, that's a Saturday which is very unusual. However, it is local so I will be able to walk there easily enough. If it is good news I have to walk past two pubs (at least) to get home so that could be interesting.
I can't believe that I feel quite as rubbish as I am at the moment but there you go. It used to happen like that but hasn't for a long long time. Just a little reminder from my body not to overdo things or to remind me that I'm not out of the situation yet.
Sunday, September 20, 2009
An Anniversary Missed
Things move on again and I notice that I'm gaining more confidence that perhaps this can be put behind me a bit now. It is terribly difficult not to live with this every day as there are reminders every day. Every time you meet someone you haven't seen for a while they ask you how you are. this blog, my general state of health, going to the toilet (yes you still look to see if there is blood every time), the daily tablets and other such reminders.
The other issue is still the most difficult one to live with and that is that whilst I'd like to make the most of my good fortune, no one else really realises what it actually means to be alive when you thought you might not be or perhaps felt that you'd be ill for the rest of your life.
I continue to work on how to square that problem and so far none of the solutions I've come up with are actually that palatable. I know that those around me have no real idea of what I've gone through and I've probably no real idea what they have gone through either. I'd like to go off and do something different and I'm not certain they want to do what I want to.
Saturday, September 19, 2009
Straightforward simple explanation
Friday, September 18, 2009
I want a bit of respect
I'm happy to help but the problem doesn't need to be fixed tonight as the delivery man who has to pick said problem up hasn't been contacted but time is running out and no one has done anything about it and now the instructions which (in my humble opinion) are simple enough to follow haven't been followed. In addition, rather than asking for help they've gone off and solicited someone else's help and that is my problem too as they haven't got back to them. despite me saying that I'll look at it in the morning things still aren't right about that either.
So, in no uncertain terms I've expressed the view that it ain't life threatening, that it can wait as DHL or UPS or FEDEX aren't exactly going to turn up at midnight if you haven't even called them with a reference number either and obviously, as I'm a bloke, that is wrong too.
It really pisses me off and it doesn't matter who it is, when the accusational tone of voice is used towards me if it isn't even a problem under my ownership or even on my radar as this particular thing isn't. I live and breathe the world of body language and tone of voice and talking to me as if I were some naughty child or misguided adolescent is hardly going to gain my unqualified assistance and help me to look favourably on working out their problem for them.
I very much doubt that a good tone has been set for the weekend but I should be getting used to no one talking to me these days or even being here. At least if they aren't here they aren't accusing me of not doing something that through some clairvoyant level I should have picked up when I was at work.
So, that's my little rant over for today let's hope no one tries talking down to me again this weekend or they may well regret that. I was in such a good mood too during the day.
A bit better frame of mind today
Thursday, September 17, 2009
One of 'those' days
It is the worst kind of management and I very rarely did that to anyone who worked for me. I may have made one set of comments and suggestions as a peer review or actually questioned the technical or commercial content of a document but I never felt the need to fiddle around for the sake of "being the boss" or any other anally retentive reason either :-)
That is what I employed the person to do, as I often reminded them about making decisions and managing their time and projects. If I wanted to manage it myself I would have done it myself and not employed someone to do so. These days it is so easy if you don't want to make a decision you can email or text the boss who makes it for you and then you aren't to blame if it goes wrong.
It was also funny that a small presentation I prepared was remorselessly added to over the past week and became massive. When in discussion I asked how on earth did they expect me to deliver the presentation in 10 minutes, the penny clicked that the original was exactly right in terms of content and timing!!!
Anyway, that's me ranting away this morning - everything takes twice as long as it should. There's never enough time to get it right first time but there's always plenty of time to go and correct it afterwards.
I'm busy as you like today though, I have two appointments and will be home late and I am seriously contemplating taking tomorrow off to catch up on my paperwork and get away from here for a few days :-) I think I have convinced myself that I'm taking it too seriously if I'm not enjoying the work.
Steve is having his 2nd of 3 BCGs later today and as I will be meeting some colleagues for a few beers this evening I shall raise a glass of beer or similar. Steve will no doubt be lying in a darkened room taking it as easy as he can and letting the BCG do its amazing thing. Only one more after this one and hopefully a good length of time off until the next poke and peek to see how he has got on. Good luck Steve. I don't know where the thought just came from but it occurred to me that Steve is "Taking one for the Team" today so as most of the BCG brigade will know what it is like we should, as a team, see if we each can remove a little of the discomfort and share it around a bit. I have to say I felt quite a twinge just writing that last bit.
Wednesday, September 16, 2009
Testing my sense of humour
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.
Tuesday, September 15, 2009
Well there's your problem
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
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
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.
Monday, September 14, 2009
Back in the land of the living
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.
Thursday, September 10, 2009
How quickly the body/mind forgets
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.
Wednesday, September 09, 2009
Getting ready
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 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!
Tuesday, September 08, 2009
What a Day
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
Not a good start to the morning
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.
Monday, September 07, 2009
No News is
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.
Sunday, September 06, 2009
Fed up sort of day
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.
Saturday, September 05, 2009
A day on my own
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.
Friday, September 04, 2009
Only a 4 day week
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.
Thursday, September 03, 2009
FANTASTIC News for Steve
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.
Wednesday, September 02, 2009
Steve's Judgment Day
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).
Tuesday, September 01, 2009
Nothing like a show of blood to get my attention
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.
Monday, August 31, 2009
Back to work tomorrow
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?
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.
Sunday, August 30, 2009
Insomnia and Bad Dreams
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.
Saturday, August 29, 2009
Bank Holiday and Sssshhhhhh - the Sun is out
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!
Friday, August 28, 2009
On reflection
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
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.
Thursday, August 27, 2009
Working at Home again
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.
Tuesday, August 25, 2009
End of the second day
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 :-)
Monday, August 24, 2009
First Day was OK
It was nice to see my colleagues again though and there was much lively banter going on. Nice to be back.