Thursday, February 26, 2009

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.

Blogging mid afternoon - on a work day?

Yes, I finally had to give in and leave at 2 pm. I went for a walk and still kept falling asleep at my desk. That's dangerous for me but also other people so I decided to come home. It took all my concentration to stay awake on the express train as I might have ended up 60 miles away in Hastings if I'd have fallen asleep. I played loud music but still managed partial snoozing!

I am home and had a call just as I got here so I am in this sort of half life at the moment. I have that "stuffy head" which is screaming for sleep but not right this minute. I actually plan to wander downstairs and hit my favourite chair and have a snooze there after writing this. I am yawning away.

Andy P has hopefully had whatever it is by now and is drinking that nice cup of clear fresh water and fingers crossed all is working out well for him.

Me - that is it - I HAVE to go and get some rest - I have a big day tomorrow and must be ready for that.

Wednesday, February 18, 2009

Dog tired - again

4pm and I was nodding off again at my desk, I had a double espresso - it did nothing! So I stood at my desk - making the place look untidy. I got my train, promptly slept all the way home (hope I didn't snore) missed a few phone calls too - I don't think my phone went off it may have gone to answer in one of the tunnels.

I see Steve K in the US is also suffering from tiredness. It is the one thing that I noticed either post BCG or Post operative. Strangely enough last year I was having massive fatigue and wasn't even able to get out of bed. I used to have to have the day off as I could sleep for hours.

I put it down to Post Cancer Fatigue and also that you whole body after BCG is out repairing cells, kicking out old ones and I think that the analogy to having post traumatic stress disorder is also - in a way - true too.

I think the only way out of this is to exercise, continue to eat properly and to ensure that you don't try and do too much. I certainly noticed that a few late nights and the payback is a few days afterwards as I can hardly keep my eyes open.

Andy P is due in to Hospital tomorrow and I have dropped him a line. He has had his TURBT and is going in for the 3 month check up. Lets' all wish him well and hope for a good outcome. Andy's staging is a lighter grade of cancer (can there be such a thing?) and he had a TURBT to get rid of it. Tomorrow he will find out the initial visual details and perhaps in a few weeks time hear what the next steps are.

For us all it means long term care, review etc. Which also begs the question - what on earth is happening to my treatment. I went to the Hospital on the 22nd January and it will be 4 weeks tomorrow and I haven't heard anything??

Tuesday, February 17, 2009

Tuesday - are you SURE it isn't Friday?

By 4 pm I was nodding off at my desk. I managed to hold off until 5 when I met my friend and went for a few beers and had my first Burger for what must be a year or more - Good Old Burger King!! We had a few beers and a burger, and got the 9 O' Clock train hence I am writing this at 9:45. My friend's wife also dropped me off home which was very nice indeed.

We had a long and interesting chat tonight and it was nice to get home at civilised hour. We often only just make the last train home! I suggested that we must be getting old if we were home by 10!

I cannot believe it is only Tuesday - so tired am I. I hope I manage the rest of the week :-)

Monday, February 16, 2009

A first

This year - I actually drove my car for the first time in 2 months I guess. Was a bit surprised how fast it was and managed to out score the traction control at one point. Ooops. Nice to be back in the Cat though even if on a local journey.

Dear oh dear though I have been yawning all the way through the evening and the tinnitus is driving me mad today. I got to my destination in time for my ears to switch into "muffled in a tunnel" mode! Great - it made conversation very difficult indeed.

I can see that by the end of this week I will be having to have another rest as I am also out tomorrow night now too.

There is an underlying fatigue to just about everything I do these days. The utter fatigue can just switch on and you hardly know it is coming as you tend to feel tired all the time. Tonight - I just kept going and I am through it but there will be pay back somewhere and it will turn up when I least expect it.

I've started to have mild cold symptoms again today but so far it is just a runny nose - I want it to stay that way if possible. Not sure if I could cope with a second cold this year.

Still nothing in the post

It is getting to be a bit of a waiting game. They haven't done this to me before and I am a bit surprised but perhaps it is that there isn't too much urgency and they will fit me in when they can. The later it gets now the nearer the operation will be to holiday time though so not sure about that.

I can only guess they are also catching up after the backlog caused by the weather too.

Whatever they are doing it is leaving me a bit in "no mans land" and I'm not a great lover of being hung out like this as I can't get on and plan things.

Work was a bit flat today - I couldn't get into my normal wit and repartee - I have been told to try harder tomorrow, so I will!

Sunday, February 15, 2009

I wonder what the hold up is?

I heard from Andy P and he will be having his procedure on Thursday, in the morning and I'm glad that his BP has returned to normal.

Steve K has finished his BCG instillations on the day that this was published. It describes a "danger receptor" that may kick-start an immune reaction to cancer in the body has been uncovered by UK researchers.

Well Steve and I can tell you all about that with out BCG treatments because that is just what it does. Perhaps this will help us in the future and treatments will become more effective? Let's hope so for future sufferers. It would be nice if the could prevent it in the first place of course but the ongoing research certainly seems to be getting somewhere.

A bust week ahead for me - not sure if I will feel quite so keen come tomorrow though! I feel I could do with a break and I've only worked 4 days!!