Saturday, February 28, 2009

2 in the morning

In fact well gone 2 - about 20 past as my back ups for the PCs have begun. I have finally pulled together the bits for tomorrow. Not sure about the sneezing fit I am having typing this though - blimey, I nearly blew my head off with the last one!

So it has taken me the best part of four hours or more to plan what will happen tomorrow. At least I am well prepared which is the main thing. All the paperwork is now done and the bags are packed ready to go. All I need to do now is set my alarms to a little later than normal, make sure I get up and arrange to be back at the Hall by 9 tomorrow morning.

I will be so knackered tomorrow (today) evening when I get home....

Friday, February 27, 2009

A bit of a RANT earlier

I needed that - I almost ended it with "I've not been well you know" or other such sickism :-)

You really can't believe the bare faced stupidity of some people. I wouldn't mind, we all pay subscriptions and it is all voluntary and yet somehow it is as if life depended on it.

Whilst it IS in my nature to fire off a smart ass one liner, it isn't in my nature to not sort this out. I suppose only another year of this and I can relax a bit.

Roll on retirement in June 2010.

WTF? Disorganised people

Really hack me off. I have been out today at a meeting and there is a meeting tomorrow that I am Secretary for. How can it be that people are ringing my house and leaving messages for me on the eve of the meeting when they have known about the meeting for weeks and weeks and in fact the date is fixed by the week in a certain month so it isn't difficult.

So why phone me on a Friday night and then expect me to phone before you go to bed when I actually wont get in until you've been curled up for an hour or two. Of course, your message then means that I have to resolve some situation or other and I end up working way into the early hours to mitigate that and you turn up in the morning all fresh faced and I've had about 2 hours sleep - no wonder I look like sh1t sometimes.

It makes you mad that this sort of thing continues to happen and I thought I would retire from this in June but have another year to run.

I think it is 8 messages in the 4 1/2 hours I have been out.

Tempus Fugit

By heck - where has the day gone? I've been thrashing away at my PC and paperwork all day and it still isn't done yet.

I can see a late night coming on yet again. The trouble is that there is a sudden rush of people who realise at the last minute that they haven't done something and I get a hail of phone calls all wanting me to sort it out. The fun part is, I am not around tonight to take their calls or sort it out for them.

Oh well an emergency on their part should not create one on my part.

Feeling OK today, still not heard anything from the Hospital which is nagging away at the back of my mind. It would be nice to know what is going on. They have written to my GP saying they are going to re-do maintenance but that was before they realised I had already had that last year.

Home a day off

Tempered with the fact that I have a pile of my own work to do is the fact that if I am honest, I really don't have a lot to do at work at the moment anyway.

By that I mean - everything is under control and the work that needs to be done is planned out. I have a good day coming up on Thursday when I will be presenting the work of the Charity to a number of people. There are a number of projects that I am starting that will see the year through.

The current discussions, which the Hospital by not telling me what is going to happen, are making a mockery of, will determine the next year's arrangement. I started at the beginning of April last year. I was actually looking at the original advert from a year back last night :-)

The arrangements are that, given they want to stick me on maintenance and not on observation, that I would have close to 50 or more days off this year. That's about 2 1/2 months and that it would be unfair on them to have to pay me sick pay for those. In addition, even though I might be deemed a "special case" the way that the contract of employment works is on three sicks you go on a sort of disciplinary procedure. Short of going around the office and telling everyone what is wrong with me (some know) that too would cause issues.

The best way forward is some form of contract or potentially to go part time but even that might prove hard to manage. I have put forward a document, contract and prices which are based on what I know from my last consultation. If that doesn't materialise then it would look a bit strange if I have priced not to be at the office and then I am.

For all sorts of reasons, not knowing complicates my life and I'd really like it all to be simple and straight forward from now on? :-)

Today is full of strange things for the Lodges like accounts, sorting out paperwork and checking on things. I need to sit down and get on with that without to many distractions. It is always unfortunate that this meeting and tomorrow's come one after the other like this.

Thursday, February 26, 2009

Hanging around waiting for something to happen

Strange as it may seem, I'm worried about NOT having any treatment. I've psyched myself up to have it and nothing has happened. It really is a strange old feeling because - in a way - I'm not missing getting whacked with BCG Immunotherapy treatments but at the back of my mind is the worry that if they wanted to do the precautionary stuff, why aren't they doing it?

It would just be nice to know what they have planned for me so I can also plan my future a bit better.

Uncertainty isn't great and I'd rather get any "shocks" out on the table now. If they are going to wait and scope me or biopsy me or treat it, just let me know - please :-)

It may sound silly but planning out your life around how well you might feel is actually quite difficult. I know what to expect so that if I know a start date I can work out that I am going to be better travelling and attending meetings than others. If I don't know I have to keep putting things off, just in case. I've been ruled too long by BC and was hoping that perhaps I'd dictate some times and plan things this year. looks like I am wrong.

Oh well - what will be will be I suppose!

Got to work

Felt somewhat worse for wear but managed to just about scrape through the day. I was nodding off at many points during the day and took myself out on a walk about a number of times. Thank goodness Friday is a day off as I'm just not sure I could have hacked another day of it.

Interestingly that is three Fridays off in three weeks but, I have had good reasons. The boss realises that I am struggling and is OK with it. He can see that work gets done and I am working as hard as I can but I just don't have the stamina for a full week.

We instigated a diet change today - shed loads of fibre and the like. That will now continue and I will try and get my body back to working properly and then try and get back to the balance.

Incidentally this was published today - it isn't rocket science - surely everyone should know this? However, eating properly reduces your cancer risks CLICK HERE.

I still think that it is all about balance and achieving what is right for you. It is difficult to find the balance that is right. Exercise, diet and not living like a hermit. Easier written than done, I can relay the problems and the issues with body balance that changing what you are used to or trying to eat what you may think is healthy without doing your homework. The near scare of almost being diabetic was more of a shock to me than the cancer! At least I pulled back from that one. The trouble is if you overdo it you have to wind back and sort out what didn't suit you and build again.

Anyway, I'm just going to have to get on with it and muscle on through it. You just can't do subtle when your fighting this one :-)

Wednesday, February 25, 2009

Try again

I will try and see what tomorrow brings. It is one of those things I suppose - I read with disbelief that I am likely to get an attack of the "Chalfonts" now I am over 50 but that wasn't at all funny I have to say. Just because you are 50 doesn't mean your body can take unilateral strike action whenever it wants and without my brain's permission! :-)

I think that I will just have to work out a strategy to deal with everything going on and to alter my diet yet again to cope. I obviously need to continue to change my lifestyle gradually to help build me back up to being a fit person again. I think Homer and the Duff man have been leading me astray all along :-)

Right, bed, rest, sleep.

A beer with Flocky Bicep

My Facebook message gave it away and Flocky knew I was at home (Facebook isn't encouraged at work). We met up for some beers and grub at one of my local Public Houses.

It was quite civilised and we had a few beers and some food and generally chatted around the usual, life, the universe and all that.

It was nice to get out. I cannot believe how run down I am. I still have the outward appearance and energy levels I used to but instead of being able to work full on for weeks, it could possibly be measured in hours these days.

If things weren't difficult enough with my ears still ringing and the deafness clicking in and out, the onset of an outbreak of the "Chalfonts" was the last thing I needed.

I feel that I just never seem to get well. I just get myself up and fit from something and thwack, something else comes along and knocks me down. Whether it is getting old or just the fallout from BC or a bit of both - who knows?

I just wish I could have a week where I felt good every day.

That wasn't good

After I wrote the blog things got a little nasty and I ended up feeling pretty crook. I didn't go to work today and my ears are ringing again. It is one of those stupid things and just demonstrates that I am still run down and still not quite right. I won't say too much about what then transpired but it rhymes with Farmer Giles!!

Post has just arrived - no word from the Hospital. No news is good news? Sometimes I suppose. I'm not sure what this means though. It is 5 weeks since I was there. Perhaps they are going to do the three month wait before treatment? I wish they'd tell me one way or the other.

Tuesday, February 24, 2009

You both can't be right

So I met up with two guys - one at lunch and one in the evening. One says I look pale but a little better than last week when I looked positively cr@p and the other that I look great. One saw me last week the other in November.

Mmm?

Actually I'm a bit miffed as I ended up not getting home until 10:30 or so and have just eaten at 10:30 and I'm catching up with the day's events.

No word from the Hospital - I can't say that it is helping keep me steady at the moment - I really like to know what is happening.

On to p of that I am not feeling particularly great right now - I feel very tired and in need of hours sleep. I'm sure my body is screaming at me to go to bed for a week and I'm not giving in to it. Who will win the battle? Time will tell.

Monday, February 23, 2009

Of course

Now it is near midnight I am wide awake. Surely your brain knows when it is time to switch the lights on and off?

Obviously some malfunction in my mind on that one.

I was rattling away today to sort out my treasurer's notes now I have my files back - it is quite funny in a way as it appears that the file is a week or so younger than the crash - it is still good but wasn't saved where I thought it might have been so perhaps it is a version before the crash. At least I have managed to recover to today's position and my bank balances actually balance - phew!

Off to bed now to see if I can get a reasonable amount of sleep for tomorrow - I am out lunchtime which will be nice. I can do with a bit of a laugh and a joke.

Back to work and tired again

About 2 pm this time, I could barely keep my eyes open it just hits like a wave from nowhere. Asleep on the train on the way home so managed to get some rest. The thing is I don't feel physically tired - I feel really quite good walking to and from the station at both ends of the day. It just seems to be when I am sat at my computer at work.

Interesting week as I am taking Photos of the team and at the end of the week have two Lodge meetings one after the other on Friday and Saturday. The Saturday one is a biggie so I am taking Friday off to prepare.

Off out tonight and glad to say I can catch up on my accounts as the spreadsheets were recovered - yippee.

Sunday, February 22, 2009

Late night

I tend now to find that if I have a few naps during the day that I lay awake at night. I have experienced this problem, along with others, since the trouble began. I'm still suffering some tinnitus and ears that keep going pop and clicking in and out of deafness. It seems to be OK one minute and not the next but is gradually getting better.

Tomorrow - the start of another week and I will take Friday off as a matter of course I think. I just found I have a batch of holidays to take off by the end of March and if the treat me too then I wont have many days to try and do that with.

Additionally I dropped a note to the Hospital today to see what has happened on my treatment. It has all gone very quiet at their end and whilst no news is good news - I am now wondering quite what they are going to do with me. I was certainly expecting to be in for maintenance by now although the note I got last time did question that after I had already had a year's worth.

So - off to bed and to see if I can actually sleep this time.

Cancer Buddies

I thought that THIS was interesting in today's BBC News.

A quote "People say they know how you feel, but they don't" from Ray Bryant kind of summed it up. No matter how you imagine it to be, it isn't anything like you thought it would be.

I still go back to the frequent catheterizations and explain that it isn't like you think it was going to be. In fact a number of the experiences just aren't in your every run of the mill day experience.

The buddy scheme and to some extent I hope recording what goes on in this blog - even the dull and boring - gets us away from the stigma and prejudice attached to cancer. Life goes on for more of us these days. Also, how you cope with treatments and what you do may be useful to someone else. No one told me at the hospital and tricks to combat the side effects. I devised that myself. That is the sort of thing that needs to be recorded so that others don't have to go through the same problems.

Combating tiredness

I still find it surprising quite how much energy has been sapped out of me these past 31 months. I struggle to do a full days work at full speed unless I am really into it and excited by it. In the latter case, there is every possibility that I will pay for that with a day off work at some point in time. I get home so tired that I just about get a chance to eat and if I sit down, I sleep.

I have been trying to work out some sort of habit to get into that would involve some serious exercise to see if I can combat the tiredness with physical activity, losing weight, generally getting fitter, lowering blood pressure and so on. All the good things that exercise, added to my careful (but not Hermit like) diet already do. I had worked out that getting home from work would be a good time to do this. First thing in the morning should be avoided - it does more harm than good I am told. Anyway, it seems only logical that as I leave for work early that when I get home is the right time.

Why don't I? Because I am tired and listless and yawning and ready to fall asleep straight away. Before, when I was exercising every day (in the morning) I was actually working from home which made a big difference to me. Of course I wasn't doing myself any favours :-) I used to get up and then go do my exercise before Breakfast and then had a Shower. Then I could crack on with work, do my BP measurements and stats etc.

Working like I do now doesn't give me the personal time I had back then and I am often out - I was out three nights this week! That is irregular and so schedules aren't really going to work even though I need them for getting the habit of exercising.

I need to come up with something creative. One of the guys at work goes to the Gym, three times a week and in the nicer months, also goes running at lunch time. I don't fancy that at all as it would break my day up too much.

I'm sure I will come up with something.

Saturday, February 21, 2009

Still not a word

I suddenly thought that I haven't received anything from the Hospital. I think I'd better drop an e-mail over to them if I haven't heard later this week. It seems strange that there isn't anything and it will be 5 weeks since I was told to go back onto maintenance.

A quick e-mail halfway through the week should suffice I hope.

Nice to have my old laptop back and with a new hard drive it has a new lease of life. It is actually my favourite machine as it has a big screen and is wide screen which I bought because I was away and could watch DVDs on it.

I have re-built it this afternoon - no great issues - lots of updates and patches to add and miracle or miracles, the man in the shop managed to save my files from the hard disk - which is great and so I don't need to try and do three years work again :-)

Mind you - let that be a warning - the hard drive is dead and yet he managed to pull off all my old files. Impressive stuff indeed.

To have or not to have that is the question

I re-read some of my posts and also noticed that Steve talks about having Bladder Cancer.

I wonder whether either of us actually do? I suppose it is pedantic semantics but they cut mine out and it hasn't come back for 18 months. Sure I'm still suffering from the after shocks and still being treated to keep it away but do I have it? I suppose it is as easy to say to people that you are "suffering from Bladder Cancer" as that is what is actually happening?

I still think that I AM suffering from Bladder Cancer even though the Cancer itself isn't there anymore. Of course, we all have the possibility of it coming back though, that really is the fear factor on this one.

I'm a little less buzzy today thank goodness. I am getting pretty excited about this business venture I have been working on for some time and it is all coming together and taking shape and finally we realise that there is a real leap forward and we can go and do something now - as we are, off the drawing board now.

Still - exciting times are ahead on that.

Friday, February 20, 2009

Friday - A Good Day

You know Andy P's news was great and it encourages all of us who have this funny old disease called cancer to look towards that day when we can say goodbye to the Hospital and the Doc for good.

Until that day - triumphs, like Andy's, makes it all more bearable.

Today I have been on a buzzzzzzzzzzzzzzzzzzzzzz. Yee Gods, have I ever been on a high caused through a meeting of minds on our business proposition and I was centre stage for a half an hour.

Tonight the curry club crew went out - 7 strong we were - and the most marvellous curry and good company was enjoyed by us all.

I was a little bit lively to start with but managed to suppress my adrenalin fueled buzz from the previous meeting thank goodness.

We had a great day business wise.

Just a good day - I am now home - very, very tired. Off to bed in a minute - I doubt I will need a nightcap to sleep!!

Thursday, February 19, 2009

Time to Celebrate

Just had an e-mail from Andy P. It is great news - the best. He woke up without all the usual paraphernalia, and was told that all looks clear and he didn't need the biopsies, he has to go for a flexi in 6 months.

So:


WELL DONE ANDY - WAY TO GO (whatever that means?)

That is the best news possible and I suggest choosing numbers on the Lottery immediately he is able.