Saturday, January 31, 2009

Saturday working

Well the committee meeting needs documenting and the paperwork needs sorting out, envelopes need filling and addressing and today is just one endless stream of administration work. I still have partial hearing although I can feel it getting ready to come back to normal - it really is a nuisance as it comes and goes, pops and clicks!

I was talking to someone tonight who is a fellow sufferer and he has finished his treatment but had the 10-12 year cycle and is nice and clear and has been for years. We had a laugh as I was so ill when I sent out the notices that I forgot two of the committee members. It is a bit like a number of other basic errors I made on the Lodge documents. Luckily having reread these I've picked up on them.

Typical to go deaf just as the meeting got going - just what I didn't need really but there you go.

Anyway, as committee meetings go it was a difficult one to run as there was a lot to get through and stuff that needed airing rather than decisions being made. It can be hard work as you can imagine.

Blast it all

I went to the meeting tonight and was partially deaf again. What a nuisance although I could laugh at myself I wasn't happy as it was an important meeting.

Lots of things were decided and I had to keep track of the meeting and write the minutes.

I'm annoyed as I felt I was on the mend and then - bang my ears are back to ringing and noise but no hearing again.

Grrrrrr.

Friday, January 30, 2009

So a Guy from DHL walks up to the door....

And I have a double parcel thing from Ben's Cookies? Well I don't remember ordering anything form a company like that and I wonder perhaps if it is a late order from my online Christmas Shopping or perhaps some IT component.

DOH - no it is hand made cookies - 30 of them - they are lovely - a get well present from everyone at work - what a lovely gesture and they are really tasty. L has arrived from school - she tells me that I am her "Bestest Friend Ever" - "just take a cookie" I tell her. A note in the box says consume within 4 days - I explain to L that it is a recommendation and not a challenge :-)

Mrs F. And I went for a walk - together - thought I'd say that. We live on the edge of the countryside and so in 5 minutes we were walking past the church where we got married (big notice about no refunds??) across the fields and through the woods where the Spitfire Pilot from WW2 is buried. We aren't far from the WW2 airfield of Biggin Hill and I actually hear planes and a Helicopter today and other sounds but somehow I have less hearing on returning from our walk :-( All the signs are good and I feel so much better today, still not right, but a lot better than I have been for days, you can tell in my outlook, the way I talk, think and act too.

On a sadder note, the confirmation of my withdrawal from my University course has come through. I get some credit towards another course if I want to do that. I'd love to but serious appraisals need to happen before then.

What to do with all my spare time. Parkinson's Law will suffice "Work expands so as to fill the time available for its completion". Actually I hope it doesn't - why make a hole in my time if I don't do something with it rather than filling it with stuff I already manage to do - ouch writing that made my head hurt :-)

Off to a committee meeting this evening - should be a laugh - everyone treats these things as being pretty serious - of course it isn't, its like all committees though and I just know I'll have to bite my tongue many times this evening. I'd really love to fire in some SMOL (smart ass one liners) occasionally but perhaps better keep my tongue in check.

Right - Kettle on and 30 Cookies to be eaten before the weekend is out. Somehow I don't think that a mathematician will be needed on that one but I hate to put back all the weight that I have involuntarily lost these past 4 weeks or so! Mind you it is always worth trying.

The healthy diet? Well - you have to indulge yourself sometimes and so that can start again on Monday or when the cookies have run out :-)

Easing of the pressure

Well not only has the pressure eased off my ear - at last and thank goodness but I am also relieved not to be looking at the University work anymore. I was really struggling with it and the thought of having to get that done by tonight - although I can hear today - was concerning. There was no way I could have learnt poetry in a day and then done a 600 word comparison of 2 poems!!

So today, it does feel like a weight has come off me and I'm pleased about that and can move on.

What I'm not massively pleased about is the conversation I had with my successor in the Lodge who has, after 5 years had to withdraw, meaning that I will probably have to do another year as Secretary of my Lodge. No great deal you may think but this job entails a lot of work because the Lodge is one of the largest and has many members, it is quite prestigious, it gets invites around the country so I represent it and it also has to be managed in terms of web site, e-mail, printing, membership and returns etc so no mean feat. I was due to give this up in June and to find a suitable replacement and get them trained and up to speed by then may be possible but it looks as if I will have to do another year, get someone to do a few and then get the understudy to take over.

Tonight is our committee meeting so we can discuss that then. I have to organise that too which is a bit of an effort on its own with all the yearly statistics and so on. Because of the nature of the membership of the Lodge it needs to be run properly and administered correctly and it requires attention to detail, planning and preparation and above all time to do the job properly. None of which the incoming guy could commit to at the moment.

So the balance continues, you lose pressure off one side and someone equals it out by putting pressure in to the system elsewhere.

A Good Sleep

My goodness - I had a long and uninterrupted sleep and got about 11 hours worth and feel really quite good this morning. My hearing has popped up a notch more this morning and whilst I still have the high pitched noise in my ear it is a little more bearable and is quieter than normal.

I really can hear a lot more this morning and details like this PC keyboard clicking away and the fans on the PCs whirring are really noticeable.

Steve K in the US has had his first set of maintenance and found out just how strange treatment can be, one day you cannot believe that you have had it done and all seems to be quite bearable and the next you are off the scale. I wonder what mine will be like. I'm guessing as I haven't had the letter that it wont be next Monday for me - just as well - not sure I'd feel up to them but probably the 9th February which is another day in my diary as AndyP will have his rigid cystoscopy and be checked to see how his TURBT went. The strange thing about bladder cancer or any cancer or disease is each comes with its own TLA (Three letter (or more) abbreviations) and glossary of terms. So people talk in short hand about tumour types, treatment, procedures etc. It's no different to the IT world where we used to talk in bits and bytes and K and the M and then Tbytes... RAM, VMS, UNIX MBPs etc. Here is the BC one and some links so you can get the whole list.

Apologies if I do go into BC speak - it isn't intentional - just comes with the territory...

Thursday, January 29, 2009

Lunch With Flocky

Was a good lunch out with young Flocky Bicep. We had a nice Curry, chewed the cud about a number of things and had a few beers which was great and it was nice to get out of the house and have a bit of company too.

Whether it was the Curry itself or the beer I don't know but my hearing improved and my ear has been popping and gurgling all evening and it seems that things are getting louder with each pop. Fingers crossed that it continues as I'd really like to get my hearing back and start feeling normal again.

Decision Made

I came to the conclusion last night that I needed to relieve the pressures I am putting on myself:

Work - trying to get back to work too early and ending up worse and setting myself back?

University - could I really catch up given that I need to listen to poetry and music to complete assignments and can't hear anything but top range anyway?

Health - I can't do anything about this and so have to live with being ill for a while and accept that as unpleasant as it is having to go and do another year of treatments that that is what needs to happen and I just have to live with it. There's nothing I can do about it.

There's other stuff of course but these three are giving me the challenges. I feel guilty that I am off work and yet I know that I can't go back like this, I am a danger to myself and others. My University Work, which I am getting good marks for and I love, is just not happening for me at the moment and I just cannot concentrate or give it the time it deserves. If it cannot be done properly and I cannot do justice to my studies and use my mind properly to achieve what I want then why on earth do it? And health, that's all I have banged on about these past few weeks. All I can do on that front is keep taking the tablets, keep eating and doing the right things gradually build back my strength etc.

So the big decision was the only one I could have made today that would immediately relieve the pressure and that was to withdraw from my University Course. As much as it pains me to have to do that, it really was the only practical way of easing something that was niggling me. We do a subject a week and to have lost what is now close to 5 weeks work is just too much to catch up on even given a 3 week extension on assignments. I did manage to get one of those in but even so, it was a hard slog. I'll miss it but I know that I would never have been satisfied with just a Pass as I am capable of Merits and Distinctions and my pride alone wouldn't let me scrape in or do work that wasn't up to my standards.

Is it the right decision? Of course it is. Logically it takes a great deal of pressure off me and whilst it is disappointing not to complete this. Another 4 months and I have had it licked, it just means that I can look forward to doing it next year or the year after. There you go. Emotionally, I'm upset a little about it but that will pass and I have spare time back to do with what I want. Maybe there is some value in that?

This morning and it is all different again

I feel quite good - in fact I do most mornings. I've blown my nose and got some pops and some more hearing back together with associated whistling in my ear. I suppose that's a good sign. I feel clear in my head and just seem to get trouble towards the end of the day and especially the night.

I imagine that I am still, in reality, reeling from having to do another year's worth of maintenance and the disruption that will cause. I am also second thinking about all the others things I do and pressure I put on myself and wondering whether I really need to consider dropping things off of and concentrating on getting fitter and healthier and concentrating on me a bit more?

It would be nice to have two weeks off lying by a pool soaking up some rays and having cold beers arrive at a set frequency. That's not actually going to happen right now but perhaps some such distraction might be useful after my first batch of treatment.

These are all classic signs of depression (there I've said the D word again) and need the usual activities to get rid of them including proper diet, exercise and so on. Of course, given how rough I've been feeling many of the normal things you'd do aren't easily achievable. They might be soon though.

At least there are some small signs this morning that I might actually be recovering although the whistling/ringing in my ears really isn't helping me concentrate too well.

Me Again - A Late Night and

I feel dreadful I can't get to sleep and I almost got into one of my silly little panic attacks again. Heaven alone knows what is wrong with me? I got to thinking that I was never going to be well again and stuff like that so got myself up and dressed in light clothes to keep myself cool as I am burning up again.

I don't know what it is, it is SO unlike me to be quite so negative about things or to being feeling so up and down all the time. It is almost as if I am afraid to go to sleep in case I don't wake up or perhaps I will wake up and feel worse or unable to breathe properly again.

It makes me annoyed when I haven't control over the situation and I know that these things aren't sensible but it seems like my head is all messed up. I'm beating myself up because I am not at work but I know that I shouldn't be going in. I know that I am not 100% - probably not even 50% and I'm coming around to thinking that I should perhaps just drop loads of things that I'm pressurising myself to do - do I really need to try and do this studying when my head isn't taking it in and I can't hear the audios - I mean I'm doing Poetry and music in the next few weeks and I can't hear the stuff to learn what I have to. GGGGrrrr :-)

I just want to be well again and I don't feel well and I can't get much enthusiasm up for doing anything and on and on it goes. The biggest rut you have to climb out of is the rut you are in of course, but I don't see the way out at the moment.

It is very unsatisfying and I'm powerless to help myself to sort it out at the moment, I don't have the answers and I appear to have lost a huge chunk of my self confidence too. Where is the guy who proudly sported his "I'm not dead yet!" Tee Shirt when he was diagnosed and has met all these challenges and been through all of this stuff to sort out his Bladder Cancer? Looks like he's run away and is hiding behind to sofa!

I know I'm bumping along the bottom and I know that things will get better and that they will take as long as they take but if you are not used to being "ill" then you just can't believe how ill you actually get. Maybe I'm still not owning up to how ill I am?

Anyway, whatever it is and whatever spin I put on it, it still keeps me up late at night and into the early hours, it still upsets me and sets me off worrying. If I am like this now I can't imagine how I would cope with something more serious than this. The feeling of terror and the crushing feelings of claustrophobia really are unpleasant and I'm feeling this even though I can actually breathe OK.

I'm sure I'll be OK soon once I get to normal temperature again and once I am breathing normally and bang some sense and common sense back into my thinking.

I think it is more unnerving because I'm not normally like this, which makes it more worrying and you just spiral downwards from there :-)

These things teach you how you take your good health for granted.

Maybe it was just being run down

Someone reckoned that I must have been well and truly thwacked at the Hospital and just really low to pick up these colds and to still feel unwell.

I suppose that is a real possibility. I didn't have the greatest experience in the Hospital and it's been a month that things have just happened to me. I feel a right wreck and even now still don't feel at all well. I still can't hear properly, I still have blocked up nose and whilst I don't have the thumping in my ear I still have tinnitus! I am doing my Vitamin C and pro and prebiotics and eating properly etc. I just don't seem to be shaking this off and what recovery there is, is taking ages and ages.

I'm getting quite worried about it really as I want to be fit to get back to work and yet I just don't feel well enough to go. I'm certain sitting on the train with all the coughs and sniffs that are normally on there wont do me any good either!

I suppose another couple of days and see how I am if it is still this bad I will go and see the Doctor again and see what we can do to build me back up. I certain that if I have the BCG treatment in this state I'll suffer more than I would normally as I am run down.

Wednesday, January 28, 2009

A good night out

It was a great night out - I was ribbed mercilessly by my friends but the main thing was that I felt so much better when I got home. A few beers, lots of laughs and I was cheered up no end.

This morning I feel a bit better but am still deaf in the one ear and - I have no idea how I have this pain between my shoulder blades unless Mrs. F. was hitting me there or inserting a knife last night :-)

I feel an utter wreck at the moment but I am sure that things can only get better. Whether I will be fit enough this week to go back to work I don't know. With my hearing this bad I am not so sure.

Tuesday, January 27, 2009

I am really looking forward to going out tonight

Just up to my local Pub in a few minutes to meet my old school chums. I've known these guys for 40 years or more and we have a great time once a month reminiscing, taking the mickey out of each other telling jokes and just having a good evening out.

I am so looking forward to it as I really do need cheering up and a boost to my system and these guys will do that without a doubt. I remember moving down this way from London and these guys being some of the first I met. My parents to this day say what a nice group of friends I had.

So - a few beers, some laughs, crikey we all need some of that as I think we are all going to feel the squeeze this year and hopefully refreshed batteries for tomorrow. It is amazing how feeling good in itself is good medicine.

Patience is a virtue

And something I need to get used to. I cannot believe that I am still deaf but not too bad. I suppose it will now come back gradually but once again the tinnitus is back which is just so annoying. I am going to go out tonight and meet up with my school chums. We normally meet on the second Tuesday but I was too ill and everyone else was disrupted this time too. It should be fun and take my mind off things. It's great to have supportive friends around.

At the moment I'm just sitting here at my PC staring at it and wondering what to do next. I really should get on with my coursework but when I tried that earlier my lack of hearing is making it a bit difficult to grasp the subject properly. I am on poetry and it never was my favourite subject. I would have skipped this module but I have an assignment on it. I listened to the first few tracks and as people's voices kept scrambling in and out of robot speak I gave up it just isn't going to sink in that way!! I think I will just have to give it up as a bad job today and go at it again tomorrow and hope that my ears are working better.

I cannot remember a time when I was just like this and just not 100% - it really is such a bind and it makes doing anything difficult or complex when it isn't.

Frustration

Having always been someone who does things and is out and about and worked (and played) really hard the past 30 months and the last 6 weeks or so really wears thin. I'm still here today, sat at my desk with my ear buzzing and hissing away. I can hear out of it but also have all the background noises to contend with as well.

I'm in that in between stage of being ill. Not quite well enough to return - as I know I'll just end up back here again. I can actually feel that I'm not up for doing more than a few hours work at a time, I do feel weak and I do feel tired.

I've got to give it time to get back to normal (heads them off at the pass by also stating that there is no way I'd ever be normal!!!). Again, it is one of those things that you have to accept. It reminds me of my Father who, a couple of years ago, had a "funny turn" and quite unlike him, we got him to a Doctor, to undertake a series of tests and they shoved a needle and got blood out of him (I was amazed he hates these places more than I do). So after all the tests and all the checks he goes to the GP who informs him that for a man of his age he is fine, Heart OK, BP OK, Cholesterol OK and so on. It is a mystery why he had the "funny turn". Then my Dad tells the GP and my Mum who is sitting beside him that it might have been lifting the 1CWT bag of sand out of the back of the car :-) . The GP then explained calmly to my Dad that he was 73 years old for goodness sake. Dad said he still felt as if he were 30... I still feel that too. There's no way I'm 51 - but I am :-(

Perhaps I'm really not admitting to being older than I think I am, I'm no longer indestructible, no longer as fit and healthy as I used to be and given the length and severity of this cold, no where near as recovered as I felt I was. I suppose I also have to admit that the BC and the treatments have taken it out of me. I suppose thinking back on those Post Cancer Fatigue days might also give me a clue about being run down. It would be churlish to think that having - what - 24 treatments and close to 6 Operations wouldn't have managed to take their toll somehow on me.

It goes back to your way of thinking that the only person who doesn't think that Bladder Cancer is a pretty serious thing to have is ME. If the words are "fighting your cancer" then that is what I've been doing but I've not felt myself getting weaker - I felt that I was getting stronger - this series of colds obviously shows different.

The Frustration is pretty obvious and the way out of it is just hard slog and letting time take its course. I can't see me shaking the cold off for a few more days and I can't see me being fully recovered for quite a while. Just as I am about to recover I'm sure that I'll end up on BCG treatment - that's bound to happen.

Oh well, life and time march on and I ought to attempt to get things done.. It is the last day of my antibiotics for my ear problems. It appears to have worked well enough that I can hear - but I can't hear music and listen to the TV properly as I still have this sounds like a robot hearing. I'll give it a few days more and if it isn't gone I'll have to go back to the Doctors and get something else. The trouble and complication being that BCG and certain antibiotics don't mix so I have to be careful on that front. Also, you shouldn't have a cold when you have the BCGs - this is because the side effects can give Flu like symptoms and you need to be aware of them. If you have already got something like that you could miss anything going wrong.

I see that this is going to - take as long as it takes and I'm just going to have to resign myself to it taking as long as it takes. Not easy for me but I know it is what I should do. It's just frustrating that's all.

Monday, January 26, 2009

Monday Evening

I went out on Escort duty tonight and MRs. F. - isn't she great - drove me there and picked me up so I wouldn't have to drive my "indulgence". In fact I haven't driven my motor for about 8 weeks or so which is a bit sad as I bought it so I could compensate for getting BC. Piccies below.
Anyway, I digress - much as I like driving the cat - I was saying that Mrs. F. Dropped me off and I had a lovely time. I won a litre of Scotch in the raffle - always useful for medicinal purposes only you understand and the company was very pleasant. The food was great, Smoked Mackerel, Roast Beef and all the trimmings (plus seconds), Jam Roly Poly and Custard (which I missed I have to say) and then a cheese board with Stilton, Brie and Farmhouse Cheddar. Mmm - great. As always happens on these sorts of occasions - yesterday Mrs F happened to cook Roast Beef too :-)
Before I went I checked whether or not I could have a beer with the tablets I am taking and, joy of joys, I could have a "moderate" amount of alcohol. So I have had a few pints of beer and a couple of glasses of red wine too with the meal and all in all, I feel great apart from one thing; my hearing is shocking. I thought it was OK and up to going out but in a room full of people I was having real difficulty due to background chatter and noise. On a one-to-one basis it was fine. Later on the deafness returned even more but even so - I have to tell you it was great to be out and about again.
I realise that I am not ready for a whole day out but perhaps a day here or there might be OK. I'm not sure about going up to town in the next few days but I might try later on in the week and see how I get on, even if for half a day. It will be so good to see my work mates again and I am missing them more than I dared thought I would.

My Indulgence. I bought this between the first and second TURBT and the only regret I really have is that it isn't an automatic as I do notice it in traffic when I have to keep pushing the clutch in especially if I have recently had BCG or an Op. Other than that though, it goes like stink and is probably the 2nd best car I've had. The best was a 2000 GSi 4x4 Vauxhall Cavalier. Lord alone knows how I never lost my licence driving that, it was so fast, held the road as if on rails but more than that - you could never tell how fast you were going until the anti-matter reactor started nudging the red line. The Cat is just effortless and cruises away and I haven't been in a situation yet where it hasn't had the ability to stop, steer or accelerate to do what I wanted.



Significant Difference

As today has gone along I've been steadily improving. Sure, my hearing isn't anywhere near back to normal but my whole body feels less constricted and my head is clearing out at last. I was finding it difficult to concentrate on anything that needed brain power and now I can actually set to and do somethings.

I've sorted out the PC and got that cleaned up, backed up and working properly. I've sorted some of my diary and calendar out for the year and I've got a clean desk - well this desk is clear - the other one has a load of paper to be shifted on it!!

At this rate, I could be back to normal in a few days which will be just great. It is amazing how quickly this is coming on. I'm impressed.

My Yearly Planner

I have actually managed to set up my yearly planner and start to populate it with things that I am "meant" to be doing. I have just realised though that I have a potential problem if my treatment starts in the next week or two with a clash on meeting dates.

As treatment is on a Monday it usually takes Monday and Tuesday for me to recover properly. That means that a meeting on a Tuesday afternoon (and I have one of those) may well be a problem for me. I've asked a friend if he can cover for me.

It is surprising just how many things are happening this year and also how many are going to clash with Mondays and Tuesdays.

February looks busy as does May and as soon as I get back to work I have to do quite a bit of work to get things ready for major meetings coming up in April and June - it sounds a long way off but believe me - it soon rattles around.

I'm rocked back on my planning because I've got to go back onto maintenance and I haven't been thinking things through properly but in a way my cold and deafness hasn't allowed me to. Today seems a good day and I'm in a bit of a quandary as to what to do this year. I had great plans to get myself off and doing things and I find myself wanting to make plans but being reticent about doing so. It comes back to knowing when your treatments are going to happen and then when the operations will be and so on. I know I have 3 BCGs coming. In my view they could start next Monday or the Monday after.

Either way there are a series of issues with trying to plan anything although I know that they can move appointments just look at the routine operation I had before Christmas. - it is now over a month since I had that and I still feel like poo. In fact you could almost say it is 6 weeks due to the disruption of being cancelled. You know if you planned a holiday for a week after biopsies or something like that you wouldn't have confidence (now) that you'd enjoy yourself and to my mind, the major thing I need this year are breaks and holidays to recuperate a bit and recharge myself, I feel really run down and out of it. I need to build myself back up again so that the treatments and operations don't knock me about as much and so I can recover faster.

A new week and a better outlook

I felt much better this morning than I have done for weeks. Whilst I wasn't as fresh as a daisy I still felt much better and almost, but not quite, had a clear head. I've still got the ringing in my ear and I can still hear pumping noises but it appears to be getting a lot better. It sounds as if someone has let a bowl of Rice Krispies off in my ear :-). There are lots of noises and pops coming through so perhaps it is getting near to a point when the large pop happens and suddenly I can hear again.

Interestingly enough, I can hear the fans on the PCs in my office today which I couldn't yesterday so a marked improvement. I hope it continues.

Sunday, January 25, 2009

Jeepers

I was working out roughly how much time I'd have off this year from being ill and treatments and all in all it works out to about 3 months off work!! That is a 1/4 of this year - gulp. Add some holidays to that and - well - I could just show my face next week and probably not see everyone for another couple of months :-)

Strewth.

As I head off into my 3rd week of deafness

I can't even begin to tell you what a bloody misery it has been with my tinnitus giving a high pitched screech in my head all the time and the muffled sound that I can't work out where they come from and the feeling of claustrophobia and being trapped inside my own body. Dreadful few weeks and just added to the way I felt after they banged me about in the Hospital too. Two weeks so far I've had this!

Added to that my electronic equipment committing Harakiri and 2009 has gotten off to a start that I want to forget.

I am due out tomorrow on Escort Duty but I wont touch any beer or wine and will have to be very careful of what I eat as the Antibiotics are also ensuring that what little food I am eating doesn't hang around long!

I am keeping my spirits up though - not sure how I am doing that - and just working my way through it. I actually think that I am taking my own advice in saying it is no use rushing back to work if you are ill and it is no use worrying about it either. What will be will be and where I used to be upset about missing work or anything like that well - what is the worst that can happen? As I've said before "no one dies" so it is OK.

I think it is just so frustrating to be sat here, behind in my University work, repairing PCs when I could be doing something else and so on.

Tomorrow takes me in to week 3 and the last week of January. If I'm brutally honest, I can't see myself being ready to go back to work much before Thursday or Friday and that is if the whole of my body cooperates to let me.

Oh well, thank goodness for the blog to let off a bit of steam now and then.