Friday, January 16, 2009
Productive but quiet day
I can hear occasional sounds and clicks but need to let nature take its course. It is massively frustrating of course. I was due to go to my Family History AGM but really don't feel up to it. Driving without hearing would worry me and I won't hear the lectures or anything else anyone has to say anyway.
I managed to get a fair amount done though today and a lot of preparation work is now completed. If I can just get a good run at it this weekend perhaps I can get back on track and get my Uni work in as well.
I haven't worked out what to do about work yet. I can't go back like this as I'd be a danger to myself as well as everyone else. I can't hear a phone, a fire alarm etc.
At least I can still work a bit from home which is useful. I've actually put up my year wall planner and started to make notes on that about what I am up to this year and all of a sudden, I've got lots of things to do and places to go. Excellent. All the F1 Grand Prix are already marked on, plus all my Lodge meetings as well as some of the visiting I am doing. All in all it looks good so far.
I'll see if I can run the momentum through the weekend.
No - still deaf
I'll be trying to do some more vapour breathing again today to see if I can unclog things. It is beginning to wear a bit thin after a week of this.
Thursday, January 15, 2009
Steam it out
Off to bed early to see if I can shake it off finally and try and get back to normal and then back to work and so on.
What a nightmare. Trying to talk to people is a laugh as I can barely hear what they are saying except when on the telephone. Oh well. Let's see if this works.
Back under control
I keep thinking to myself "what else are you doing that takes up your time" and in reality I couldn't tell you. I just seem to fill the available time with doing things. All effort and no achievement as my boss used to tell me many years ago.
Maybe I just need to hear those words next Thursday? Maybe that is it. Am I putting everything on hold awaiting the outcome and then the next steps? The "missing something" is still there and needs to disappear. Not sure what it is that is missing as of yet, I am guessing that it will crystallise next Thursday or soon afterwards. Could be a spiritual thing, could be a work thing, could be a personal thing, I don't know.
I shouldn't have a worry in the world really should I? What have I got to worry about? Work? I haven't been there since mid December and yet the office still runs without me and things are still getting done. What does that say about my job? Leisure stuff - I can have as much as I want, there is no stress. My friends are all under stress with the recession, where the next order is coming from etc. I don't have any of that. I'm giving up a number of my key jobs in Freemasonry this year. Again, nothing to worry about there. A few more meetings and I retire.
It is as if I don't actually want to put down any roots or make any firm commitments or decide on anything because there is still that little nagging doubt in my head. If it is gone by this time next week (and I do hope it is) perhaps I can get on and release a bit, I'm the only person holding me back.
I'm often my own worst enemy.
Well that's a small step for me
Ho hum, at least some improvement though which I will take. I was getting to the point of wondering whether I'd ever be well again the way it was going.
I am however, going to spend as long as is necessary making sure I AM well before returning to work this time. I have ever expectation that the last 4 weeks have knocked the stuffing out of me.
Wednesday, January 14, 2009
Thump, thump, thump, thump, whine
The head over a bowl of hot water and Vicks Vapour rub didn't quite do it but it brought back old memories of the bronchial tube thing I used to have when I was a kid. It looked like a tea pot that had been pulled up in the middle and the centre bit had a large cork with a plastic mouthpiece on it. You drew breath in through your mouth inhaling steam and this sort of bronchial mixture which had been mixed with the hot water. the outlet/spout was actually an inlet to bring air in to mix with the steam. It was different if you used a bowl as you just stuck a towel over your head and breathed over the bowl but kept your eyes shut as the fumes made the edge of your eyes water.
I haven't used any of these for 45 years or more!!! And where on earth the memory of that evil bit of porcelain came from I'll never know :-)
At least today I was able to do some work and get on with things. Not at a pace I was happy with but at least I could concentrate and there was no extraneous noise to distract me. In fact I got one important document out. Now if I can concentrate and get another finished tomorrow I might just be making some serious inroads into my pile of things to do. Hey there may be an upside to this cold after all.
Well I am going to try and lie down quietly and not wake the house again with this cough. It has the barking sound of a performing Circus Seal and even I can hear it over the deafness so it must be bad.
A good thing the Mayor didn't bring in
However, I don't think radical is needed. I shall try the old fashioned method of a bowl of hot water and some eucalyptus and see if the vapours sort it all out for me!
Here's hoping. It is beginning to drive me wild only listening to my heart and the "bells" :-)
A good Omen?
Guess what just arrived from my Consultant? An Appointment for next Thursday 22nd January 2009 at 11:15.
I hope that it is a happy circumstance and a good Omen that we are all being seen on or about the same time.
Fingers crossed for all of us.
Bad night
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
A moments rest, a sip of water, tickle in throat appears to have gone, lay down:
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
and
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
It wasn't getting any better I did the honey and lemon trick, lasted 5 minutes:
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
I took myself downstairs and after an hour all was under control. Mrs. F. appeared saying I should get back to bed but sit upright.
I did as commanded, climbed the stairs, set up pillows appropriately, slid into bed trying not to disturb. Huge involuntary gulp of air:
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
After 10 minutes of this I again took myself downstairs, double dosed on Honey and Lemon and Benylin and then after a while got it under control enough to realise at 7 in the morning I was being awaken by Mrs. F. who suggested I go up to bed. Pretty good advice, my feet were like blocks of ice and my neck was a bit stiff. I had three hours or so in bed, had a shower, have dosed myself up with various drugs again and will see how today goes.
I'm still very deaf indeed. All I can hear is my heartbeat and high pitched whistle in one ear.
Let's hope that I have broken the back of this cold today - I could do without another night like that or Friday night....
Tuesday, January 13, 2009
All making fun of me :-)
I hope it gets better tomorrow
What to do next
I just hope that I can get rid of this quickly and get back into rebuild mode :-) Things like this, I find, never come at a good time. Of course, is there "ever" a good time??
Hello World
The whole street can hear my TV - sure of it. I have been cheering myself up with the Monty Python TV series DVDs I got for Christmas, watching the odd episode when I emerge for my hour out of the bed. Subtitles on so I can get the gist of the noise.
I'm a little disappointed not to have my results yesterday but then again, I wouldn't have been able to hear what was being said to me and I could have infected the Hospital or got something on top of this. Will just have to wait. I'm sure if it was something worrisome I'd have been informed some other way. Although, my Appointment yesterday was in the Urology Nurse's area which would have been interesting - the site of my BCG instillations!
I am going to venture downstairs now and have a little food and see how I get on with things today. The head cold seems to have gone, the sore throat is less, the cough is worse and the ears are the same as they were.
When you feel this bad, my advice is not to go near a Vet!
Monday, January 12, 2009
24 Hours later
So I didn't go to the Hospital and didn't get my results and they will reschedule my appointment. I'm a tiny bit disappointed but I knew I was going out on a limb for Saturday. I think it was a good day out, a good meeting and that the members and visitors all seemed to enjoy themselves.
I'm paying the price for it now.
Sunday, January 11, 2009
Surfaced for a few minutes
It looks as if, if I can't shake this, I won't be going to the Hospital tomorrow for my appointment. It would be churlish for me to take this into the Hospital or for me to pick up something whilst I am still so ill.
I've just had a bowl of soup and will take my self back to bed again to see if I can shake this off.
Saturday, January 10, 2009
Its over
It appears you get to 50 years old and your body just goes into revolt and body melt down! At least things are better than yesterday and I have had a couple of beers this evening - spaced out as I knew I had my paracetamol and ibuprofen as well earlier and really shouldn't be mixing it up but, hey ho, if I sleep tonight, perhaps I'll feel better in the morning.
It seemed to go very well but I was very concerned that is was a one sided things as I appeared to be doing just about everything. Someone whacked me with a chair accidentally and my foot feels really sore and badly bruised.
It is enough to induce paranoia.
Anyway, much happier than I was last night. Feel a long night coming on though but hope that everything settles down. Lots of decisions to be made and things to consider.
Here Goes
It isn't every year you get to dedicate a banner - the last time was in 1936 and so working on that it would be about 70 years away!!! So I don't want to miss it.
Off in 40 minutes and go and get the place ready. It gives me 3 hours to sort it out.
It got worse
I can now hear in both ears my heart beat but at least the high pitched screeching that was going on had stopped. After an hour of agony, I managed to get everything under control, including myself, with some deep breathing and some calm thoughts. Then it really got nasty about 2 pm and luckily Mrs. F. said to try some Nurofen. I didn't want to take anything having had 4 - the maximum number of cold sachets the day before.
Anyway, a heat pack on my ear and neck and 2 Ibuprofen sorted things out and I eventually got some fitful sleep. I got up at 09:30 and had some toast, I have decided to do the Paracetamol and Ibuprofen mixture to see if I can sort this out. I believe (bit of late night research) that the decongestion sachets actually block the tubes up to your ear. If that is so, no wonder I have had problems - I always do.
So I have just taken a phone call about this afternoon and I do hope that I will b in a fit state to go. I was worried last night as I thought it might have been an ear infection yet I think it must be some sort of congestion related thing as there is no dizziness etc.
Someone said "you're going through the wars at the moment". He isn't wrong there. It's like Arnie has come back and given me "Payback".
"I'll be back!"
Started off OK
I've got the hot flushes coming again now, I will go back downstairs where it is cooler for a while and see if I can relief the pressure.
I haven't felt like this for so long and it really isn't at all pleasant. I know that some of it is nerves for tomorrow but not much. I just need to go and get comfortable and try and get some rest. The trouble with this is the more that you worry about it the worse it gets.
Friday, January 09, 2009
That's Nice
What a nuisance, the pressure behind my ear is making it difficult to hear anything at all. I feel like a total wreck at the moment. I can hardly believe that I am like this. If anything I am worse now than I was at the start of the week :-) If I was a Horse, they'd have to shoot me!!
I've finished my preparation work for tomorrow now so I need to go and drug myself up and see if I can get rid of this cold as much as possible for tomorrow's meeting.
I hope all the effort will have been worthwhile. I am sure it will be.
Better but not much better
I've whacked some Vitamin C and I am having one of these Max Power Lemon Cold and Flu thingies with added honey. Sore Throat tablets and anything else to soothe my throat also being considered.
Another scab and bits came out this morning, this time more reasonably pea sized like normal.
Today, I'm on tenterhooks awaiting deliveries of toner for my laser printer, binding equipment for my brochures and working out all the other logistics for tomorrow. I'll need to ask the lads to move chairs and things around tomorrow (I must remember not to do that myself).
Damn I feel knocked out and just not right at all. I'm sure it will all be fine tomorrow, it always is, but I could have done without the added problems too.
Thursday, January 08, 2009
OMG Ooooooooo YUK!
About 45 minutes later I went and I kid you not, the scab must have been the size of Wembley Stadium. Oh alright then, a bit smaller than that about the size of a 10p piece (size of a Dollar US) I'm guessing, no more blood but hell, if they cut bits that large into me no wonder I feel beaten up.
I've been on the drugs all day for colds and Flu and back into a warm bed in a moment to see if I can sweat the rest out. Sore throat, sneezes and coughs - I'm being paid back for the past couple of years of being cold free I guess :-)
I can't believe this - I'm so unfit at the moment.
Everything I've touched today has turned to poo
I then found that my Laptop hard drive (I bought a new one for it) isn't compatible and then I knocked my coffee all over my desk and the floor of my office!!
On top of that I sent a note quitting the University Course I was doing as there was no way I was going to manage to finish that with all the impromptu stuff going on as well.
I'm just mighty hacked off with everything at the moment.
What else could possibly go wrong
I'm feeling - well, to put not so fine a turn on it - sweaty - I've been sweating this cold/Flu, whatever, out these past few nights and I am now also steaming away inside my jumper and tee shirt. Hopefully I'll get rid of the damn cold thing as I want to be fit for this weekend.
Wednesday, January 07, 2009
End of a Day I'd rather forget
I need to see where I am with things tomorrow morning if I can realistically get my work done by Friday night I will try but I am losing hope of ever catching up now. There is just so much to do that I am not certain I can fit it all in.
I also need to work out what I am going to say in my talk on Saturday night - I haven't even written that yet!! I need to have a flexible talk to do anything from 5 to 15 minutes. It is all again a bit of a rush and didn't need to be as I was going to do this last May and didn't actually do it until last week!!
Back to clear again
I have dosed myself up with cold and flu remedies and will be taking it very easy again tonight. I was going to go off to the Jazz night but couldn't face the cold or the possibility of making this cold any worse than it already is.
I've managed to finish off most of the brochures for the weekend. I am getting a final proof read done and can then assemble them.
Nothing like
I'm guessing all this coughing and racking my body has dislodged one of the scabs. It wasn't just a scab it was a full on flow for a short while and then afterwards went clear.
Shudder!!! It brings back many worrying memories but I'm certain this is OK and it just means all the scabs are coming away now. I just need to make sure I don't do anything silly whilst that happens.
What on earth was that?
I was really surprised to find that when I got home, I sat down and went into a Flu like series of shivering, hot and cold, headache, legs like lead, sore throat. Where on earth did that come from. I've dosed myself up with drugs and gone to bed and sweated most of it out during a very uncomfortable night's sleep. I still have some of the symptoms in a minor way but it did take me by surprise.
I was going to venture out tonight but it is so cold and I don't want this cold to get worse. What a nuisance.
I think I have also resigned myself to having to give up my course. I just don't have the time to catch up and I haven't been able to give it the concentration and attention that I should do. I will discuss that later this afternoon and probably give that up. It isn't what I wanted but I have been so low with this set of tests and over Christmas and the New Year that I would need to make a supreme effort to catch up and I just don't feel up to it.
Tuesday, January 06, 2009
Changed Date
New appointment is next Monday (will I ever get back to work?) late morning. So at least by this time next week I will know which way the land lies and what the next steps are going to be.
A bit of trepidation around that meeting but maybe I'll find out a bit more about what went on and of course, the answer to the most important question of all - is it clear?
Well you certainly got my attention
Monday, January 05, 2009
Ventured Out
I broke the back of one of the documents today and hope to complete the rest tomorrow. I still have lots of little bits to do but must get on with my course work as well. I feel that my time management skills really will come into play tomorrow! They need to.
Oh nuts
Damn. I'd better get my arse in gear for that.
On a brighter note, thank goodness I didn't go for today to have the Operation. Knowing what I know now I'd have been lucky to have made it for this weekend's big show. Mind you I might have got my assignment done on time.
No need to panic quite yet - tomorrow morning will do for that :-)
In a Way
I just hope that I can get fit quickly enough to get back to work and to get Saturday out of the way. Also that I can sit at my desk for a little longer than I can now. I can do about 1 1/2 hours at a time now but even then that is pushing it.
Sunday, January 04, 2009
Getting Somewhere Now
I also need to do another booklet which is far easier as it is an A4 folded in half, again about 100 of those.
So I'm pleased with the progress and it has been good to sit down and concentrate on just getting this sorted out.
I've passed a few more scabs and bits tonight and so at least the inside of my much beaten up bladder must be getting better and back to what it considers to be normal.
I am beginning to feel better and hope that a few more days convalescing will have me sorted out and to get me back to some semblance of normality.
Better but some pay back
At least today I have made a decision not to go to work tomorrow and I feel for the rest of the week. If I am honest with myself, I am not up to it and I'd rather sort this out now than go to work and set myself back as I have managed to do in the past.
I've got so much of a backlog of work built up that I must tackle this starting today and somehow I need to work out a way of getting it all done by the end of the week. I like a challenge - obviously...
Saturday, January 03, 2009
Living Beyond Cancer
About Time Too
http://news.bbc.co.uk/1/hi/health/7752247.stm
Rip Van Winkle
It is a friend's 50th party today so I was left to cook some of the cocktail sausages this morning. That surprisingly easy task has left me tired too. What a wimp :-)
At least I don't have all the heavy headed cold symptoms anymore to contend with. Mind you, can I cope with a night out again?
I'm also seriously toying with not going back to work on Monday - I really cannot see myself being ready for that by then. I cannot sit at my desk for longer than about an hour at the moment - what chance of a full day at work?
What the hell did they do to me?
But hey guys, I shouldn't be feeling this beaten up almost 2 weeks on? Whether they cut deep, bent me into shapes that aren't normal, strapped me upside down or whacked me with a massive General Anaesthetic only they will ever know I suppose.
I can't believe how lethargic I am, how weak and just washed out.
There is another explanation someone floated. It's like the end of a long race, like a Marathon and you've crossed the line and now you are exhausted and catching your breath. That is another explanation that is plausible. I can see that when you get to the end (or supposed end) of something like this you let your guard down and succumb to fatigue or something like it. It's almost like that - utterly knackered :-)
Anyway - I look back to my last few weeks of posts and find that I am bleating on about how rubbish I feel but other people are far worse off than me. I need to get a grip on this - I'm beginning to turn into a whinger and I don't like that.
Friday, January 02, 2009
Doesn't seem to be getting any more predictable
I got my letter from the Hospital today as well. Now here is an even more bizarre thing. I was told that they'd see me in 2 weeks or so given the holidays, so Mid January. Now the 19th February 2009 isn't mid January - in fact it is almost 2 months from when I was discharged. So I've written an e-mail to the Hospital just checking out whether they really meant that or whether they meant the 19th January. It can be read in a good way if it is the 19th February if you think about it. So I'll see what they come back with.
In the meantime I am trying to get myself motivated to get going today and once again I find that I really don't feel up to it.
Hey ho... Maybe later - I work better under pressure :-)
Thursday, January 01, 2009
Curiouser and curiouser cried Alice
But what is very strange indeed is that now, I feel fine, my head has cleared, I can breathe normally and I feel much lighter and ready to go and do something tomorrow. How quickly things swing around. It is a bit strange this coming and going of symptoms.
I'll see how I am tomorrow - I do hope that I'll be able to crack on and do some work.
Strange
It felt like a small bit of Flu but I reckon my immune system beat it overnight. The problem is that it is another day that I haven't been able to do anything constructive. I've the odd cough and I feel a bit weak - I certainly don't feel up to getting on with some brain work - I can't concentrate long enough. I am just sat here tired and whacked out.
Wednesday, December 31, 2008
Feel Like Poo
I wonder if my Immune system is fighting off a bout of Flu or a cold as it isn't coming out like a normal cold or Flu. Slight sore throat, slight cough and so on. Weird.
Tuesday, December 30, 2008
Things Have to Change
I'm surprised that things are similar to last year and in some way to the year before in terms of outlook and wanting to move on but being unable to decide what moving on actually means. Each year has seen great strides forward and as far as I know that remains true today, if the biopsies are clear then I have been clear for over one year and in reality more like 18 months as I didn't have cancerous cells in April 2007 either. This is a massive positive - I will wait until I am told officially but unofficially (and they haven't been wrong so far) an all clear does make a big difference going forward. Will it be enough to make or even know what changes I think I need to put in place? I suppose I'll need to tackle that in the New Year.
I've been thinking a lot about the next steps and there will be a blog about it when I have completed it. I find it the most difficult thing but perhaps it is the most important too.
For example I am trying to address:
- What do you do when you get your life back?
- Where do you go from here?
- How do you live with the uncertainty that it may come back and you'll have to go through it all again?
- Do you HAVE to make a difference or can you just go back to normal?
Juggling with the various scenarios "does my head in" and so I am spending a fair bit of time trying to rationalise it out. Everything is up for review and options need to be worked through - hence it will take me a while to work through it and eventually blog about it.
Feel worse today than yesterday
The time compacts up doesn't it? I have no idea how I am going to fit all this lot in properly in the next week and a half. I'm sure I'll manage it somehow - I always do.
Monday, December 29, 2008
Only hurts when I cough
I want to be fit and back to normal now but the reality is, it is taking much longer than I remember or want it to be. It sort of backs up my view that two things happened here. My Consultant told me this (if clear) would be the last lot of treatment and, as I understand it, it should be the last set of biopsies taken as an operation under a general anaesthetic. She also told me that in taking biopsies, they go deeper into the Bladder Wall to make sure that things are clear. If they have thought these are going to be the last then I'm sure that they would have gone deep and also there is a possibility there are more than the standard number done if the apprentice had a go and did a partial job.
So whatever it is I've got to get on with it and recover, it is just annoying that I am not quite as well as I want to be and that I just cannot get on with stuff that needs to be completed.
I have so much to do and it is frustrating to find myself unable to do it. I know that I should be happy enough that I'm in a position to moan about it!
Bad Day
I fancied going out tonight but in reality I don't want to be sitting on plastic seats or walking around much as I feel worse today than I have all week. How bizarre - all catching up on me no doubt and payback isn't comfortable at all.
I'm trying to get back up to speed with my studies and the work I was doing before last week. The trouble with that is I still cannot concentrate for long - I get sleepy too and so as much as I'd like to do a blitz and catch up, I am forced to do lots of small sprints to try and get things done.
BCG Tolerance
I reckoned that they were challenging and when I did get a bad one - it really was bad but that was early on when I hadn't worked out what to do. Stupid me was trying to carry on working afterwards and the next day when I should have been lying down. I didn't prepare properly and so on. Once I worked that out things got easier. To anyone who doesn't have to have these it is without doubt the most horrendous sounding treatment to have, especially how they deliver it into your bladder but, as much as you can get used to it, you come to accept it. It is, after all, saving your life and so if you look at things that way then you can deal with it.
It is a strange thing to say that it was OK for me and some people really suffer with it and take a lower dose. I've had 24 all full doses but I'm comparatively young as most people get BC when they are much older and cannot tolerate the sorts of treatments we are talking about here.
I'm just surprised that the Doctors are surprised about the way I tolerate it. I suppose they are told by many patients how bad it is.
I've kept detailed notes about the BCG treatments and the side effects and in a way looking back on them, the first two sets of treatments that were actually killing off the cancer were pretty rough and not nice but I honestly expected that I'd be lying in a heap for days, vomiting and not being able to eat and a pile of much worse stuff, I didn't expect that I'd even be able to walk properly or be up and about but I was OK after 24 hours generally. When I hear of how Chemo and Radio work I tend to think I got away lightly. But again, if you haven't "HAD" to go through it, it still seems terrible.
I think I need to think more about this to do the subject justice. It is, in my opinion, a balance between what is acceptable in terms of cure to you. The IVU X-Ray really made me feel very ill indeed and yet these BCGs made me feel bad for a short time but just look at the results.
1 Week On
I am definitely a lot more tender and can actually feel where they pulled me about. My stomach muscles and that whole area feel strained and tender. I'm not sure how much that is also me getting out and about and carrying on as normal as well of course but I think you tend to notice these things.
I've decided to see what I can do to get my computer sorted out today. I have set up my e-mail on another computer (I have - no sorry had 3 so 2 remain). I need to set up some of my other e-mail accounts and to do a review of what I think is missing. I do tend to back stuff up all over the place and to have files on more than one computer. I also tend to do 2 back ups of everything and so, in general terms I am OK but anything that I have done since the last back up will be lost for sure.
As usual there is the inconvenience of lost messages and files but all my photos and important stuff is always double backed up. I might take a friend's advice and do off line storage in the future.
Sunday, December 28, 2008
You tend to forget
Yes - you forget how knocked about you are until you start to get tired out and also how you sleep for longer and feel like sh1te. My throat is still a little sore and I am still making sure that I am drinking plenty of water. The problem with focusing on anything for a long period is also manifesting itself as I just cannot get the enthusiasm together to go and sort out my broken Laptop. I've tampered with it but it does look terminal to me as I cannot even get the hard drive to spin up!
Oh well - perhaps tomorrow and my head will be a bit clearer and I wont feel quite so exhausted.
Saturday, December 27, 2008
Tired
I'm doing OK with this ongoing stream of events. I find we have another one today to go to but that should be it until the 3rd January. At least I'll have an opportunity to sit down today and rest. I've been keeping going and awake somehow but when I do get home I crash out completely. I think we are out in the evening so at least I get most of the day to sort myself out.
When I reckoned that I couldn't see where they had shaved my leg, I now notice patches of hair gone from my left leg. This increases my assertion that someone other than my Consultant actually did the work on me as it has always been my right leg before. I also know that it was the same Theatre as all the rest I went to.
The back of my left hand is now beginning to ache and bruise up but everything else feels OK. My middle areas stomach, groin etc are tender but not sore - I know I've had something done to me but other than that it is OK.
The dreams appear to have subsided and the only really recognisable difference in me is an anger about the way they went about this at the Hospital. Not my Consultant's fault - just "the System" and the sheer number of sick people in Hospital at this time of year. I do hope that the results are such as to ensure that I no longer need to go in for this level of surgery again.
Friday, December 26, 2008
Not good
Oh well, it is a bit of a pain in the ass though as I just realised that I had put a list of people on it but can recover that from a friend.
Life without IT can be a challenge.
Wednesday, December 24, 2008
Merry Christmas
I am just waiting for everyone to come home and to start celebrations with my family, my neighbours and my friends. My Nephew has just arrived from Luxembourg and he has been cheering me up with his stories. Soon Mrs F and L will be here and we can start to celebrate and enjoy ourselves together. I can start to lubricate with beer - which is a bonus!
It is a time of celebration and happiness but also a time of reflection. This year I look back to some of my friends who will not be here at this time, who didn't make it and I will spare a moment for a few who face that very challenging journey soon. I hope that they will have time to find peace and solace and the courage to face their very difficult journey ahead. This Christmas for them I hope will be full of hope and laughter and joy and not one of fear or bad reflections.
This year has been a turning point in my fortunes both in my health, my career and personally and I will be thinking about how lucky I am to have such good friends (with their remarkable senses of humour) and so many people near and far interested in and rooting for me.
It makes me feel very special and very privileged and it demonstrates that in this world where there can be so many ills and terrors, disease and disasters there is an island of hope that is called humanity and the care for (and of) your fellow citizens. If nothing else that I take away from this year it is that charity, friendship, trust and honour are all things that set us apart from the rest and I hope that we continue to demonstrate that in 2009.
Thanks for all your kindnesses and good wishes, prayers, black humour, toilet humour, bringing me down a peg or two, building me up, helpful suggestions and ideas, silent strength and just for befriending me, I cannot even begin to tell you how much it has meant to me this year to have so many people rooting for me. I appreciate it SO much.
Have a great Christmas - mine starts in 5 minutes :-)
Scar Wars VI - Return of the Bed - I?
Darth Urologist and her evil henchmen having failed to operate last time are keen to get our hero on to the table? "Do you expect me talk Darth?". "No I expect you to cry 003 and a bit" (thanks Flocky - I'll never get a girl friend now!).
Having starved, as instructed and arrived shaken, not stirred at the Hospital, our hero was led immediately to Theatre Preparation but was told, as were the others in the area - "don't get changed as we don't have any beds and you may be cancelled." "Deja Vu" thought our Hero Nero! "What did you say?". "Deja Vu" "Wow I thought you were about to say that". Time ticked by and our hero practices deep breathing and self hypnosis and listens to music and generally brings his blood pressure from off the boil to slightly above having your head squeezed in a vice.
Then the inevitable happens, the Registrar walked in and said that we are cancelled but asks me alone to stay as I am a priority and it might be possible to find a bed. The chap opposite gets dressed and goes off to enjoy Christmas and new Year without his Prostate being bored out. The other chap, who has been very nervously waiting decides to pay to go private and within 15 minutes he is signed up and gowned and off to Theatre giving me a nervous look and a thumbs up. I smile and wave reassuringly to him. He looks like I feel - poor fella, I know what he will feel like in the morning. Bless his cotton socks, on the way down to Theatre he tells the Nurse that he is worried that I may get cancelled again. I tell the nurse that I was feeling for him too as he has been having a terrible time and was really anxious.
I am told that it is now looking very doubtful and I am getting to a point of having not eaten for 16 hours or so and not having drunk anything for 6 or more hours and Mrs F. turns up and we discuss going home.
Suddenly all hell breaks loose and they want me to change and get ready to go to Theatre now. The urgency in their voices can only lead to complete adrenaline switch on in my body as they rush to get me prepped for the Op. The Porter arrives as I try to put my music in to calm myself down as it was such a shock to the system. I cannot listen to music, my BP is off the scale and suddenly I am really anxious as if in shock.
I arrive at Theatre and suddenly there are about 10 people around me all talking at once and I am now getting quite upset as they are all gabbling on about something and I can't seem to answer one at a time and get them to ask questions slowly. Eventually I get some sort of sense and we go through the check list, someone almost gets a smack in the mouth for some garbage question but I just give an angry retort back to whoever that was over my left shoulder - I can't remember the question now just that it was stupid. Calm descends on the room when my consultant comes in and leans over and smiles at me, she notes my heightened state of anxiety, apologises and says they will try and make things calm for me. From then on, only two people talk to me - it must have been their lunch break - The cannula goes in and hurts a little and they start prepping other areas but this time with little urgency and not roughing me up as they were doing earlier. The last words I hear are "a little pre-med and it should feel like a gin and tonic without the hangover".
I awoke in recovery and had a drink of the best water in the world, poured from the purest fountain of mountain glacier water (or probably from the cooler) however it is the best coldest water and tastes absolutely fantastic. Then I found I was catheterised. I was not happy, in fact, it must have been obvious as the registrar was called over who mumbled something about it and how all looked OK but didn't really answer me why on this occasion but on none of the other I had this bloody pipe and wash out attached to me. As is usual in recovery you come in and out of consciousness. I went in and out the washout bag was removed and when I came to next I was going to ward 5 - they were impressed that I knew where I was going as they had to look it up and then said I was right :-) They told me as they gowned me up where I was going.
I was on Oxygen and a drip, I came off those shortly after 2:30 in the afternoon but they kept the Christmas tree of valves and bits on the cannula which meant it was cumbersome and liable to get caught which it did on a number of occasions. The catheter was (thank goodness) a smaller one than I have been used to and so it was uncomfortable but manageable. I started drinking lots of water. I was less than impressed when I asked for water to be told that it could be got from any of the taps. I did explain that as they had connected me to a bag on the side of my bed and that the tube passes between the guard rail and the bed that even Harry sodding Houdini couldn't have escaped, finally did they realise that perhaps they would do it. Eventually Mrs. F arrived and she got me some water but the same thing. On the last ward we were not allowed to get it yourself as they needed to work out liquid in and out. On Florence Nightingale's ward, the war wounded and other miscellaneous ill people obviously didn't have that sort of problem and I yearned for the Urology Ward where at least they understood such things.
The General Surgery ward - what can I say, lots of very ill and very frail people with stuff connected all over them. Two guys opposite were almost bed ridden both had made successful expeditions out of bed on their Zimmers to the door and back. They were delighted with progress as they should be, they had made a distance of about 12 feet each. I'm not detracting from their efforts, just to highlight the sort of ward I was on. I was fitter than some of the nurses on there!
So, I wasn't happy and the poor old nurses were running about with lots of sick people to clear up after and so I got left to my own devices. then I found out I was staying in overnight and the catheter was coming out at 6 in the morning and I had to pee twice after that to go home.
I remonstrated with the nurse about it and she said how did I know what this was all about and I did explain that as this was the fourth time I had had this particular procedure I believed I was qualified to know what normally happened. I didn't win any friends. I was getting, by this time, pretty hacked off with it all.
My consultant arrived and she could see that I wasn't my normal cheery self. She explained why I was catheterised after I asked her why in a voice that was scathing and unbelieving at the same time. Apparently she felt that peeing would be too painful on this occasion and decided to do this. Me? I think she let someone else do the operation and they were less than gentle with me and she had to make that decision. I also asked her why I had this thing drilled into my upper left arm/shoulder. It was an Analgesic needle apparently in case I needed pain killers. I asked if it could come out as I wasn't using it and am normally prescribed oral pain killers. Sure was the answer but the nurses wouldn't take it out until I was leaving which again mighty pissed me off. By now the Cannula was also beginning to hurt a lot and they wouldn't take that out either.
Frankly - bollocks to the lot of them was my attitude by this late time of afternoon - about 5 pm. I was in a really foul mood by now and the other guys were really chatty in the ward. I spoke briefly to them but then stuck my MP3 player on and tried to calm down. It didn't really work and I had a meal, and Mrs. F. and L came in to see me with a pack of Wine Gums (for medicinal purposes only). Mrs. F. was pleased that I was a little happier than when she had left me. Not much gets past her and L is a very funny girl and so we had a lot of laughs and L and I destroyed a large bag of Wine Gums in the time they were there.
After they left, it wasn't long before lights out was happening and I was happy to have my light out at 9:30 and try and get some sleep. I was still too angry for sleep and the MP3 player did its best. I got perhaps 2 or 3 hours of fitful sleep but the chap diagonally opposite wasn't at all well and coughed and wheezed and was constantly being attended to. In the ward across the way at about 2 in the morning all hell broke loose as the lady in the bed was horribly ill and they needed to do a major clean. There were bangs and metallic crunches and rings as people clattered about to control her condition and to make the bed fit for her to return to.
In fact, that is the thing about Hospitals - you don't get any rest there are always people walking past you or along the corridor and dropping things and banging into doors and people taking measurements and all that. It is worse before you go to Theatre as every footstep could be the one coming to get you.
The Hospital experience is not my favourite. I am hoping that this was the last time that I need to go through all this. The mental preparation and the dread of it hasn't gone away, in fact I am better at this than I have ever been because I have prepared myself for it.
I suppose the best news about the whole thing is the fact that the bladder looks OK, it has a few phaser blasts and light sabre marks to the walls where the BCG and surgery have done their thing and in reality, I am most grateful to the team of people who have done this for me. Whilst I may not have enjoyed the "customer experience" the outcome looks to be the one that I've dared to hope for. Another few weeks waiting around to find out the results and I hope to have a good reason for mindless celebrations.
So, after a horrible night in the ward, at 6 the nurse came and removed the catheter and joy of joys no bloody injection before hand - they fill you full of antibiotic and blow me if they don't come along and whack you with another lot - but this time, out came the catheter and all was well with the world apart from the leaking you get for the first few hours. I duly filled myself up with water and made use of freedom from the bed - on reflection I should have done a Mel Gibson at this point, stuck on some blue paint and screamed out "FREEDOM!!!" at the top of my voice. I doubt anyone would have awoken and it would have been met by coughs, wheezes and the odd fart no doubt!
I asked if they would NOW take off my cannula and the device on my shoulder so I could have a shower. "Have a Shower with it on" These people are taking the p*ss I thought. In fact I thought of harsher words than that and at one time, I was considering coming home and taking out said Cannula and device myself - how difficult can it be? I was desperate to get home. I managed to sort out a good pee in a jug for them and they recorded that, had breakfast and delivered another "good" one and then got the news "just one more" I thought they were "F" joking. When I said that "you're moving the goal posts" I was told it has always been "three". "It wasn't last night" and neither had it been at anytime before. Apparently now it is as I asked two or three people. I then decided to divide and conquer by getting all the nurses involved. Having done the third pee and it being of good colour and consistency, quality and quantity I could go home. out came the cannula which bled like you cannot believe. I was surprised I had that much blood in my body. The other thing in my shoulder just came out - it didn't seem to be in a vein or anything but there was a needle dug in me :-( YUK.
So I got dressed and we re bandaged my hand after staunching the blood. I said goodbye to my fellow patients and got out as fast as I could. Rang home and Mrs. F. came and got me.
The Registrar told me that if I got any infection (Cystitis) or any thing like retention I must get back into Hospital A&E (ER) straight away. He then informed me of the possible scenario - again he said that it all looked clear but that lab tests would confirm. Then said they would need to look inside my bladder again at 3 months.
Dread - I don't want another of these in 3 months. I really hope what he means is a Flexible Cystoscopy. Now these aren't particularly pleasant things to have but in terms of keeping their eye on you they are a lot better than the preceding I can tell you. My first and to date only Flexi was 2 1/2 years ago when I was diagnosed. The pain afterwards was excruciating but I feel I can probably deal with that now and it will be done locally not miles away as it was then. I'll find out in a few weeks time what comes next and I will try not to get too excited just yet about being clear. If I am what celebrations we will have.
That's Better
My brain is still a little fuddled as I can now see from yesterday's e-mails and blogs :-) No wonder they won't let you drive home after a GA!
I'll try and piece together Scar Wars VI later and post it up here.
The main thing is that I'm certainly in a better sense of humour than when I left the Hospital yesterday. I am glad that I didn't fire off any smart arse one liners to the nurses - they have a difficult job as it is. I was almost about to accuse them of bed blocking but thought better of it. It is amazing how you can turn from being a nice rational happy guy into a monster in short order. I have to remember it is a system failure, lots of people are very ill at this time of year and whilst I was a priority patient (you are because you have been cancelled once already) it wouldn't have mattered if these had been done in January really. It is amazing how stress and frustration makes even the mildest of us into angry people.
Tuesday, December 23, 2008
Sleep
Crikey Christmas Eve tomorrow. I shall be taking it very easy tomorrow I can tell you.
Settled down a bit now
Anyway, certainly in a much better sense of humour now that I have had some hours napping and running to and from the toilet all day :-) Keep the liquid intake up!!
Curiously having a catheter in overnight meant no burning and stinging sensation this morning which was a relief when going to the loo for the first and subsequent times - something to be said for that then but I still cannot stand stuff hanging out of my body and I was so uncomfortable with that and the half a mile of piping on my cannula. . They need to make up their minds whether they expect quantity or quality with urination checks. They asked for 2 last night then once I did that they changed their mind and made it three. By now my sense of humour failure was almost complete. The Cannula hurt like crazy and bled like mad when it came out and there was another one stuck in my upper arm near my shoulder which came out with no problems. Never had one of those before either. I wonder if they prepped me for something larger or because of the heightened state I was in did something else to me. I'm sure this wasn't the handiwork of my Consultant perhaps one of her apprentices.
Anyway, I'm back to my normal happy self after having gone through a pretty anxious and unpleasant day and a half. I've never had a set of biopsies like this - it actually felt like the 2nd TURBT in terms of how rough I felt. The cancellation bit was a nightmare and then as I was about to go home to reverse that was devastating, not that I didn't want the procedure, that I had resigned to not getting it done to 2009 in January and then all of a sudden it was panic stations, get the gown on, wow your blood pressure and heart rate are high - "No shit Sherlock!!" :-) I was into Theatre in 5 minutes flat - that from about to put my jacket on.
More when I feel up to it- have sat too long on this hard chair and can feel complaints coming from nether regions :-)
Back in one day
Good News = Whilst there is red patches and scarring - it all looks normal. Obviously microscope will determine that. I wasn't impressed that I may need another of these in March though :-( More when I settle down - it was all a bit fraught as I was cancelled almost and then straight into Theatre at the 11th hour - nerves frayed to pieces as is patience in keep changing the goal posts on getting out.
Monday, December 22, 2008
A disturbed night
Have had my tablets and showered and I am packed ready to go. There is about one hour to go now. I'm tired but otherwise relatively neutral at the moment. It seems to be the pattern that the days leading up to the event are more anxious than the day itself. I was doing my deep breathing self hypnosis stuff yesterday but probably heightened my awareness of today's events rather than settled myself down.
I have my MP3 player on me and so I'm ready to get going and get this done and out of the way. I'm also ready for Christmas having sorted all the presents out and everything is wrapped. The biggest problem this year has been the chaos of the last two weeks where I have missed sending out cards to everyone or to some people. I did a lot earlier in the month and somehow I think I lost my list and unlike me, I cannot remember who got cards, who didn't and whether I sent them an e-mail or not. It is very unlike me - I haven't sent out the Company Christmas Cards (I normally do about 100 printed and 700 or so e-cards) either. It is a sign of the disruption the cancellation caused me that a lot of these things are not done.
Sunday, December 21, 2008
Off to bed and guess I ought to get packed
I do hope that I get out on the same day this time - it is always much better to sleep in your own bed I reckon and you feel far more comfortable too.
That is food out of the way
Let's hope that this time there are beds available and I can get this over and done with. It means a lot to me to get it out of the way. Each of the steps you take along the way are major milestones in getting cured and moving on. This could just be the last of the "heavy" steps along the way. Diagnosis, TURBT, BCG and Biopsies plus the IVU X-Ray (my personal worst experience of all time) can all be consigned to the experience and the "in my past bin" I hope.
Only present I want this year? Yes you guessed it. Fingers and everything else crossed that it all gos to plan tomorrow.
Mumbo Jumbo?
Steve in his excellent Got Bladder Cancer Blog advocates using a breathing technique SEE HERE
I use something similar to the second technique:
- Find a little space preferably where you are not disturbed
- Get comfortable
- Long slow deep breath, hold for mental count of 4 as you exhale slowly close your eyes
- Silent mental count 1 to 10. Count each number as you breathe out. Between each breath say to yourself "one..Deeper Relaxed..Two..Deeper Relaxed.." etc
- By the time you reach the number 10 you can go deeper by visualising:
- Counting again from one to ten
- Going down one escalator after another
- A beautiful spot in nature, noticing the sights, sounds and smells (or somewhere you feel at ease)
- Skiing down a mountain
- Walking downstairs
- Swimming in the sea or lying on a sunny beach
- Floating gently on a cloud
When you are at a level of trance at which you feel comfortable, give yourself positive suggestions. Give each suggestion at least 10 times - be passionate about it; feel it, believe it
Emerge yourself silently and mentally by counting from Ten up to One and then open your eyes. As you are emerging yourself, give yourself suggestions that you will emerge "full of confidence, energy and vitality for the rest that you have just had, feeling marvellous in every way"
The suggestions I was given are below:
Every day in every way I am getting better and better
I am in control, I create my own reality
Negative thoughts have no power over me, I am in control
I create my own reality through the power of my mind and this is so
I persistently think and act in the direction of my good and my goal; to be a happy, healthy, relaxed person
I am love. I am loving, loved and beloved
I am healed by the Creative Force within me
My body knows just how to keep me well and I pay close attention to its signals. I obey those signals, I relax, I let go and stay well
My body systems are co-operating with the surgical procedure, we are all working together to create healing
My blood pressure is normal and will stay that way
My lungs breathe easily and effortlessly
Every day in every way I am getting better and better.
Now - you may think it is all Mumbo Jumbo but for me - it worked really well and this, together with music (all types work for me although thrash and heavy rock don't really soothe the mind in a Hospital - they are OK post Op though) help me to calm down. I can take myself into Hospital and not need anyone with me anymore and I can and have managed to see off the 3 previous lots of biopsies and 2 previous TURBTs plus 24 BCGs this will make 6 visits for General Anaesthetic procedures on me in 2 1/2 years. Sure - no one likes it but if you can control yourself then you begin to get to the purpose of what this is all about. It is about curing you and making you better. Sometimes it doesn't feel like that and yet at the end of the day it IS what this is all about.
How can I be of a cheery disposition and (normally) be positive? I often consider this to be a number of things:
- A wake up call
- A blessing (perhaps not quite the right word)
- A turning point
- Time to reappraise what IS important
I wouldn't say that you get some sort of deep and meaningful religious insight or suddenly the meaning of life pops out and bites your bum or anything but you do start to see things in a different light. Seeing the operations as steps to getting better and the treatments, which are challenging to say the least, aren't there to be horrible or to hurt you they do actually make you fight and get rid of (to a great extent) your Cancer. You just have to mend your thought processes around to the positives in all the horrors that are done to you. I still subscribe to the old adage that there are people far worse off than you and that I am lucky to live somewhere that not only has the ability to cure me but has the staff, resources and know how to make it happen. In some places in the world, I'd be dead by now, that is why I shouldn't be angry anymore about having got cancer and that is why I should be positive all the time.
A quiet day
I found out that Mrs. F didn't tell A that I was going into Hospital although I think that A probably knew as I'm sure I would have said something. She will let A know after I come out. Mind you not that A would be particularly worried about me going in anyway.
There is little left to do except for me to pack for tomorrow and I must catch up on my studies and on writing up this 75th History which, I am pleased to say looks to be nearing some sort of shape as I have all the information and the general layout sorted out now.
I'm trying not to think about being uncomfortable next week :-)
Sorry - it still cracks me up every time I see this photo - OUCH :-)
Saturday, December 20, 2008
This time tomorrow
I also need to work out quite how I go about doing my two assignments. All of this can wait as there is always bags of time over Christmas and the New Year when I am at a loss as to what to do and so I need to make sure I do it then. it can all be done sitting down and I have a Laptop so it isn't as if I will hurt myself???
I have to remember that next week - don't lift or do anything too strenuous. We just realised that I cannot walk over to me in-laws on Christmas Day - it is just too far and there are a couple of up hill stretches that would for sure mean I'd start bleeding. The number of times I've done stuff and regretted it afterwards!! I just need to remember that they do dig much deeper with these biopsies and I have to be careful for a good three or four weeks.
You know, the main thing is to hear the words all clear in the New Year. It wouldn't quite be re-birth but it could be damn close I reckon.
Soon be over and done with
A will not be there but I hope all the other children (well two are 18, one is 16 and one is 15). We have been having this party for 17 years I think. It is nice - Church and then down the road to have a great evening. All three families used to go on holiday together and we went to Portugal a number of times and France and were able to hire large Farm Houses and Villas. All that is now changing with 2 of the oldest having been away at University, two at College and one left at School. It is like a switch - once we are there and the food and drink start to flow we know that Christmas has started.
While we were out last night meeting A's boyfriend's parents - a very nice meeting I have to say - L decorated the House, put up the Christmas Tress etc and so it looks Festive now. We don't tend to do this until a few days after C's birthday which was on Tuesday.
I've started pulling out my Christmas CDs and I'll see if I can cheer myself up a bit :-) Not that I'm down, just that yukky feeling prior to going into Hospital the sort of dread feeling - difficult to explain but as if you were about to go into a difficult meeting where you were going to get roasted by everyone. Anyway, sure I'll find plenty to distract me as I go on during the day.
Friday, December 19, 2008
Last Day
So tinged with a little sadness I'll see her off tonight and also with some satisfaction that she is getting and gaining her independence. It is hard to let go but you must.
Not a great lover of Chili
I didn't have a lot to drink either, a few beers at the pub and one with the meal and that was it, so I cannot blame that for waking every hour.
This morning all is OK with the world, the sun is out and I'm at my desk working before 9. It's the day of the Office party but I'm not tempted to go, lovely though everyone is at work.
I'm catching up on e-mails from friends and find mixed news from them. One has had a Brain tumour and is undergoing treatment, another is recovering from a nasty disease that threatened to stop him working. It didn't but the recession has done that and he gets made redundant today. Judging by the news coming in, quite a few think their jobs are at risk. A couple are getting odd contract jobs here and there. It depends where you look as I still get a steady stream of offers for Program Management work and yet certain retail and manufacturing work is at a standstill. Goodness knows what the banking sector is like but my colleague last night reckoned that it was currently a bit of a "blood bath" and hard work to make a living working in. He may have to lay off some of his people having already gone to short time working and instigated other cuts. He wasn't happy about that but has to face the reality of the situation.
Anyway, the rest of the day beckons and I need to get on top of this history research.
Thursday, December 18, 2008
Useful Videos
Here is the male version
Here is the famale version
Time to go out again
Finally I get down to working
I sent an apology e-mail out last night to many friends as I have been so disorganised this year that I haven't sent out cards, newsletters or any sort of correspondence. At least I got an e-mail out to most!
I am writing a History of the Lodge - luckily only the last 25 years of our 75 year history and it is a bit like watching paint dry at the moment as I am trawling through the minute books and taking information from there to use in the document. There is a lot of going forwards and backwards in time to cross reference things and it is time consuming and rather dry work. I hope to be able to keep interest levels up or I'll never finish it.
Discretion
I'd love to go to the Office Party, it would be a real hoot and I know that a number of people want me to be there (I can be quite amusing and almost charming at parties). The trouble is that I know I wouldn't just want one beer and if I have an audience, then the actor - well stand up comic - comes out and we would have a good laugh and joke.
I think discretion is definitely the right thing to do. I must be on my "best" behaviour at least to start with on Friday as I have never met these people before and I am not the easiest person to deal with especially if you don't get my sense of humour or my attitude to life. With a light lubrication of beer I can imagine that it would be a very one-sided conversation. They are all off skiing in the morning as well so I imagine it wont be a boozy affair.
Technology
This morning, with an urgent MS Update required, two of my machines were playing silly buggers as they were updating themselves (I'm sure I turned off that feature a few weeks ago) and hence I lost a number of configuration settings. The other PC just refuses to work properly this morning and whether it has been updated or just given up the ghost I now have to find out. It is typical that this particular machine is the one I need today as I was working up a few documents on it last night.
I cannot believe that in this day and age we cannot do better. I'm lucky, I can generally fix stuff like this but Joe Public must wonder what on earth is going on.
Hopefully after I have this fixed I can get on and tackle the pressing parts of my growing to do list.
Wednesday, December 17, 2008
What's important
Whilst next week isn't going to be easy it really is the best way forward, I know it is and whilst I feel a little uncomfortable about it, it isn't the end of the world if some of my tasks don't get done.
I just need to convince myself - if I repeat it often enough perhaps I will :-)