Late evening reflection

Well what a day. Of course the headline news is that I am clear. Not only am I clear, but Steve K in the USA is also clear - good one Steve - it is early on and this is his 2nd all clear which really is great news. This is my 4th clear.

We are both off on slightly different regimes now. I am off on some sort of maintenance gig and Steve will now repeat 3 BCGs and then get another Poke and Peek using a Flexible Cystoscopy and I will have 3 plus another 3 BCGs and get a Rigid Cystoscopy and biopsies - if they are clear I get a repeat performance of that. It seems over here in the UK that they favour full biopsies taken from all over the bladder and in the US they are happy to do a visual. The BCG immunotherapy regime is also different too.

The thing that brought me up suddenly was that I needed to go back on the BCG maintenance for a further year. It really is a belt and braces thing and I'm shocked a bit about that but at the same time, that is what the Consultant says ought to happen and if it increases my chances of staying clear and limiting recurrence then hey, I'm all for it.

I suppose it is difficult to communicate the disappointment to anyone unless you have to go through it or have gone through it but imagine, if you will, having it all explained to you that there isn't anything wrong with you, that they haven't actually detected anything wrong with you in 18 months but they are going to treat you as if you did have something wrong with - just in case.

You don't mess around (I would use a stronger adjective there in other circumstances) with Cancer. If they see it, they cut it out, if it can be annihilated with BCG, they do that. In Bladder Cancer country - it recurs with alarming regularity. It is treatable as you can see. If it is caught early and of the right grade you can be treated and cleared of it. So you can see that there is no other choice than but to go through it all again. It is tiresome, more than that it has continued to wreak havoc with my life in terms of tearing up schedules and making work and other thing unpredictable (Steve K is a Myers Brigg ISTJ I am an INTJ) we need to work in predictable, logical and structured ways as we are the planners and managers in the world. Want to upset me - take away my plans or disrupt how I have mapped things out and you'll do just that.

Today didn't go to plan - that was why I was off balance. Things didn't work out the way I had expected them to and what I had in mind for the rest of the year was torn up and lies in tatters around me.

Logically, I need to have the treatment and my work appears to be supportive about it. From expecting to have 2 days worth of Hospital appointments this year (2 flexi peek and pokes) plus a day for tests, I now have the prospect of 24 days worth of BCGs, 10 to 20 days for operations and "normal" recovery, 2 days for pre-assessments and 2 days for consultation off work. That could mean that this year I would end up taking almost 2 months off work and I've almost had the whole of this month off with the fallout of the last operation and the colds and infection that followed afterwards!

That is what I mean by affecting my year. I was planning on doing a lot of things that I couldn't do last year but dates of treatments and operations etc will now all need to be factored in so it makes for an uncertain life. I suppose I could refuse certain days or get the Hospital to avoid certain things but it all has to fit around my treatments and I don't know when they will start now and hence what the knock on is going to be. I've accepted certain appointments now that will probably have to be cancelled too. It is just the fact that you can't plan and that your time is fragmented and a BCG treatment over three weeks seriously messes things up. For example it takes two days out of each week for three weeks. Generally they are Mondays and Tuesdays and sometime, if you are feeling bad a Wednesday too. Travelling isn't easy straight afterwards and you need to time and plan getting to and from work carefully.

Additionally, after 12 weeks you are meant to have your biopsies and yet it can be 10 or 14 weeks it depends on their timetable.

So - that is really what tends to mess up people like me who are planners - it becomes uncertain and the side effects are uncertain and trying to organise anything is a bit of a hit and miss affair. Having always been one for keeping appointments and keeping to time, having milestone dates and targets and hitting them to suddenly not meet those dates and to have this much uncertainty and doubt is difficult to contend with. If I were totally disorganised it would all be so much better as it would appear normal.

I've done enough reflecting for one night and had quite enough of today. It is one of those days where you just can't quite believe what has happened to you. tomorrow, in the light, it may all appear so much clearer.

Oh dear, how sad, NEVER MIND!!

The immortal words of Windsor Davis in "It Ain't 'Alf 'Ot Mum!"

Never mind indeed. Third time cancer free, 18 months without recurrence and that is what I have to remember. The BCGs are tolerable, the operations really aren't good - especially after the last one - perhaps I need to make a fuss about it when I go for pre-assessment this time and see if I can get some sort of dispensation on what they normally do to me.

It's a pernicious disease eating at your body and at your mind and yet I don't have it. I haven't got it, I'm free of cancer and have been for ages. My mind is thinking that there is some sort of set back here or retrograde step and that isn't true. Sure it may not be that you just get scoped once every 3 or 6 months - this way they actually do cytology on you - full biopsies, belt and braces. BCG even though there isn't CIS, TCC or anything else in your bladder.

It is all about preventative maintenance and not about cure. We've done cure, we've had the heavy TURBT and Re-Turbt, the initial BCGs that removed the last traces of the cancer. It is all moving in the right direction. It just isn't moving as fast as I wanted and it was a big surprise that another year's worth of treatment was required. A big surprise.

At least I'll have something to moan and whinge about for the next year then :-)

Yes I know - honestly I do - I've just got to get over it and work out what to do this coming year and re-plan yet again.

Mixed Emotions

Laugh or Cry, Be happy or sad, rejoice or be sorrowful?

I really not sure what to do. I should be delighted in a way that I am cancer free, have no pre-cancerous cells at all and everything is great and looks fine and "you're doing well and it is a great step forward".

But - there were atypical cells in there. So to be absolutely sure, I'm back on maintenance - not sure exactly but I heard it as 3 BCGs every 3 months with Rigid Cystoscopies at 6 months and 12 months (deep joy!). I'll find out very soon - I expect that I'll commence in February - it might be 3 BCG followed by 9 week then another 3, 12 weeks later rigid cysto.

So I don't know how I am at the moment. I'm a little bit shocked to tell the truth - I thought that I was out of the woods, off the Roller Coaster and on for a life time of observation. As it is, I've another year added to my sentence.

I know I'll feel differently about this later - it is a bit of a downer but it really isn't - it will teach me for being optimistic though :-)

Oh well, life goes on..

Dawn - Judgement Day

Well a bit later than dawn. Had to be shaken awake by Mrs. F. I'm up and showered and knocking back a fist-full of Pills. It is rainy and windy outside which I don't need - I'll walk to the Hospital as there isn't anywhere to park really. I will obviously keep my mouth closed as with these pills rattling around me I could be mistaken as a whistle.

My hearing has improved a little bit. I can certainly hear a little bit from one ear now and a lot more out of the good one. I'll make sure they are aware at the Hospital that they may need to SHOUT at me.

I noted that I had 6 procedures and 24 BCGs in 30 months. So that is something every month for that time if you look at it that way.

In a little over an hour and a half I'll get going off to the Hospital. I was going to take my laptop in to the local PC man on the way to see if they could rescue any of the data but as I can hardly hear myself talking felt it may be difficult to explain what I had done and what I want them to do. Being in the business I don't want them to spend inordinate efforts redoing what I have already done and I also need to set the scene about what I need rescued as most is backed up except a couple of spreadsheets that are pretty important and I hadn't backed them up for a couple of months. If it can't be recovered then it is annoying and means more effort on my part to be creative especially as they were accounts :-)

I've go my list of medication, my questions and I can't really take down a book or music as I need to concentrate on what people are saying so I know when it is "my turn" because of this muffled deafness.

So here I am after a 30 month Roller Coaster Ride wondering whether as it pulls into the terminus this time it will actually stop and let me off? If it does, I can go on one of the lesser rides (please not "It's a Small World")....

More later I'm sure, for the moment I'm looking forward to seeing my Consultant and hearing what the results are and what is going to happen next.

Don't think too hard about it

Off to bed, still not got my hearing back but it has improved (if that makes sense?). In other words I can hear more than I could but nowhere near as much as I probably need to.

I am going to try not to think too much about anything tonight and let it wash over me a bit. Tomorrow - well it will bring what it brings and I hope for good things now. I've thrown off the think of the worst thing and you wont be disappointed to actually daring to think it will be OK. I hope that I am right.

At the same time, I'm going to be thinking about Steve K over in the USA who will be having his Poke and Peek tomorrow. It is a slightly different protocol as he is having a flexible cystoscopy but nonetheless, it will be a big day as a good result is to go on to the next course of Immunotherapy. I'm praying that it will be the case.

I've just remembered, or should I say been reminded, what one of the side effects of antibiotics is. Not pleasant - not for publication. I sure hope they are doing their thing and tomorrow will see another improvement. I haven't had the worries about going to bed tonight. I think that things have just relieved enough - certainly the pressure is off my ear drum now that I can get to bed OK.

I hope sweet dreams to follow and a good day tomorrow. Night all...

Less than 24 hours to go

So how did we get here?

1 Visit to the Doctors
1 Flexible Cystoscopy & consultation/diagnosis
1 TURBT and biopsies
1 Intravenous Urogram (IVU) or intravenous Pyelogram (IVP)
1 Re-TURBT and Biopsies
6 BCGs
1 Rigid Cystoscopy
6 BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy

7 Consultations + visits to GPs when required.
5 Pre-assessments

Of all the procedures, in three cases I was catheterised overnight or longer - the 2 TURBT for 2 nights and the last Rigid Cystoscopy overnight.

A total of 24 BCG, Immunotherapy Treatments - all full dose and each involves the insertion of a small catheter (no local anaesthetic) to instill the BCG and between 24 and 48 hours side effects. For 6 -8 hours after the procedure, the bathroom at home is treated as a hazardous area and is subjected to bleaching and cleaning procedures after passing the BCG out of your bladder.

Of the side effects I had the first few visits to the Hospital saw me get a nasty series of "heat" rashes from the beds and also that both operations and recoveries were on some of the hottest days of the year. The BCGs varied from nothing to complete agony and searing pain to Flu like symptoms, to bones aching and cramps, fevers and chills and anything in between. However, I was told it would be worse than that so in a way I felt that I'd got away mildly as many never go the full course!!

The Silver lining is that we caught my high blood pressure and I am on treatment for that which in a way, much as I hate drugs of any kind, means that I get checked regularly for that and continue to be monitored - which is no bad thing.

Diet - that has changed a bit but I was never one for fast food or anything other than reasonable balanced diet. I now err more towards vegetables and fruit but I'm not freaky about it but did get so at one point about 18 months ago. Other changes. I try every day to have a pro-biotic and prebiotic and use one of those yoghurt drinks. It helps your immune system and there are some reports that it assists during immunotherapy treatment and hence I started then and haven't stopped.

I've cut down on cholesterol but my score on the door was 4 for that a year ago and I guess it will be less this time.

I have done more exercise but haven't for a while mainly I didn't feel great after the last lot of BCG and set myself back after the previous operation and set myself off bleeding again! I will get back to exercising regularly. When I am not laid up as I am at the moment I walk about 3 miles a day to and from the stations at both ends of my journey.

The list above has been since July 2006 - so 30 months of this. That's an Operation every 5 months. A BCG treatment almost every month (24 of them).

It feels to me to have been full on and yet between each set of treatments was a 3month gap before the operation. During Maintenance you had 3 BCGs, followed by 9 weeks in between, then another 3 then the 3 month wait for the operation. It is strange though how it feels you are never free from it and it is great when you can forget it and distract yourself from it.

The amazing thing is that it isn't painful to have bladder cancer. What IS painful are the things they do to you. Painful and uncomfortable. In addition, there's the bit that "messes with your head". That isn't painful but it does contribute towards the way you feel and respond to cancer. If you have a broken leg - you can see it, it is in plaster or some sort of cast, you hobble around on crutches, they take the cast off, you can walk and after a while you forget about it. Your mind doesn't keep wondering if the break in your leg is going to spread across your body or that it is going to get worse, or that they will have to cut your leg off or build you a new leg. In a way that is the added ingredient you don't get with common ailments that you get with cancer.

So - where is all this leading? Well just a retrospective of how I got from there to here and what tomorrow means. I'm hoping it means no more of the above although I imagine it means flexible cystoscopies for a long period to come to follow up and make sure all is OK.

But here is the rub. I should be clear. If I am, I would have been clear officially since November 2007. Yes, 14 months. Unofficially, I would have been clear for almost 18 months. In Bladder Cancer terms, the longer you are clear, the less chance of a recurrence there is. But - and here is the sobering bit - it can recur, it can recur many years later and even though statically I'm on the good side of those stats - age and effectiveness of treatment and recurrence, I did have a high grade tumour in the first place. A clear tomorrow is a major step forward but I still live with the knowledge that I'll need long term observation and follow up and may not be out of it yet!

That's a bit better

Slept in a bit this morning and the noise level and pain in my ear is down about 50% from yesterday. What a relief. I hope that continues throughout today as it has made me feel much better. If anything I am more blocked up and congested than before - perhaps that is part of it. I am continuing to take the other bits and pieces to get rid of the cold elements especially the cough.

Well this time tomorrow I will be waiting to for my appointment and hoping that I hear (no pun intended) good news. If I do, I wont be able to go and immediately celebrate but will have to store that up for after this course of antibiotics are over.

I have no doubt that the outcome of that will allow me to move on and perhaps all these things in my head will stop spinning around and begin to form something cohesive?

I had to hang around tonight as well

I held back going to bed and just chilled out watching the box for a few hours. That seems to have helped me just get a little calmer than I was earlier. It is pretty peculiar I have to say. I seem to have got some slight improvement in my ear - certainly a small pressure reduction but also seem to have a bit more congestion as well.

I'm off to bed now and see how these drugs take on my hearing problem. I could do with having some hearing on Thursday when I go to the Hospital for my appointment.

Somethings not published for the moment

I wrote a Huge blog last night called "concerning mental frailty" and I realised that it was going to be too long and too complex to justify just the one blog or the sheer amount of detail I crammed into it. It sits with a number of other unfinished blogs in the system ready to go out one day when I feel up to it.

In addition it went really deep into the dark side of my mind and what I'd felt over these past few years how the various stages of the disease and treatment, work and losing my job etc., and how each of these affected me.

I was having a very bad time last night - obviously! I just got fed up with being ill (all the time). I suppose I was pretty shook up and frightened too that I'd had the panic attack / claustrophobia - if you have never suffered from it, believe me it really shakes you up. It is like a sort of rising panic and you can't find your way out and that makes you really twitchy. Luckily I know myself what to do and got up and made the situation OK for myself but it did bring back bad feelings and memories. Getting out is always the thing I need to do. Wherever I am I know where the doors are located, the fire exits and so on. I had to get out of my bedroom as there was only one door and I opened the window but that wasn't enough and I had to get down stairs where there were more options. Spooky isn't it - but somehow there are three exits from the ground floor and that's OK!

Luckily it hasn't brought back the very dark and very nasty stuff of 18 months to 2 years ago. The "Dark Dog" stuff which was just horrible and - say it as it was - just downright depressing and black,terrible, frightening and a really nasty place to go.

So - in a way I'm glad I didn't inflict the big scary blog on you or go into some of the stuff I don't want to tell you about for the moment. I just reread it myself and can see why I didn't publish it.

I'm a bit stir crazy being trapped inside my head with this deafness - lord alone knows how Beethoven or anyone else must feel with it - mine is temporary but it must be terrible to live like this all the time.

You can see why some people liken cancer to post traumatic stress disorder when you get moments like this. As usual it rally helped to write it all down last night but exploring the emotions and the fears at such an intimate level may perhaps take me some time to do.

At least I feel a hell of a lot better tonight than I did last night. That was really scary...

That would make sense then

I saw the Doctor - funny how if you really listen carefully you can hear your name despite the inane chatter, doors opening and closing, phones and buzzers (what do those buzzers actually do?) often found in a doctor's waiting room.

Very nice Doctor too. Took one look at my ears and was pleased that they were both clear of wax. Then said that my ear drum is bulging outwards - yes BULGING and red and that he had no doubt it was an ear infection and put me on very strong anti biotics. He reckons a week to get some sort of improvement. I have to keep up with all the other stuff I am doing, pain killers, anti inflammatory and nasal sprays, steam inhalation etc.

As Spike Milligan said "I told you I was Ill"

Blast - let's hope the drugs work - mind you antibiotics = no beer or alcohol either :-(

Off to the Doctors

Enough is surely enough and this cold hasn't cleared itself by the designated time and so far has proved stubborness itself to everything thrown at it. I'm off to the Doctors in a few hours time to see if it can be fixed once and for all.

I don't particularly like Doctors, Hospitals etc but I need to get this sorted out and over and done with. I cannot have another night like last night.

I eventually felt good enough to get to bed about 1:40 or so. At least that was a bonus - I was worried that I'd be up all night or need to go wandering the streets for an hour or two.

Let's see what happens later.

Oh Boy I didn't need that

I had a mild panic attack this evening. I get claustrophobia occasionally - often when travelling or when in very hot confined places - trains are my worst - I've spent loads of time getting off trains and waiting until a less busy one comes along. I don't know where it comes from but I had a small attack a week ago when I was so congested I couldn't breathe properly. I had to get up out of bed and go downstairs and hang around outside the back door.

Well tonight I got myself ready to go to bed and dosed myself up with Paracetamol and did the nasal spray and all of a sudden I was on edge and not feeling quite right. My head was pounding - or rather my ears were and for all the progress I thought I'd made today, it was back to the deafness and sound of my own heart beating out its rhythm. Then I felt hot and breathless and so opened a window, then went downstairs and turned the heating down. After a few moments I was getting quite edgy and decided that the best thing to do was to get up and go stand outside. It is freezing outside but that seemed to help to start off with. Mrs F. Seeing how bad I was helped and we have decided that If I am no better in the morning I am going to the doctors. I feel trapped inside my head. It is the deafness and constant pounding in my ears.

Anyway, I have been in and out of the garden and watched some TV - not that I can hear much and just whacked some more nasal spray into my system. I feel a lot better now - I may even be able to go back to bed without feeling hemmed in.

I normally manage to contain my claustrophobia, its OK as long as I manage it. I can manage trains - I can always get off and wait for the next one. I can always sit without my heavy jacket on etc. I cannot stand the underground and avoid that like the plague.

I firmly believe that I've had so much self-confidence knocked out of me these past few years what with BC itself and the roller coaster you are on and with the job front that it is almost inevitable that you are going to get some sort of issues like this. The mind is a different thing altogether and who knows what things it cooks up.

Most people who know me would say that I am pretty confident sort of person, very much single minded and a bit entrenched even. A very few who know me are acutely aware of my reticence to get on the underground and I'm actually OK if I am on there with someone else because I can distract myself. Few I think would expect me to be quite as bad as I was tonight and last week. The rising panic of last week feeling that I couldn't breathe properly and tonight's little episode show how bad the disorientation is with this deafness. I heard myself saying "Will I ever be well again?" and that isn't like me at all.

Anyway, at least I have got over the panic bit and the temperature feels as if it has gone down to an acceptable level. I am breathing easily and feel much calmer now.

I remember getting into a state when I first came back from the doctors having been to talk to him about the early symptoms of my Bladder Cancer. That was just plain upset and angry and tired and distraught. It is very different to this dread feeling I got tonight very different indeed.

Thanks goodness for the blog, it takes many weights off of my mind and body.

Thursday - Not thinking about it too much

I suppose, there is a bit of me that is a little worried about Thursday but for once, I am actually quite upbeat about the results from December. So far (touches wood) the visual results have always matched the results the microscope confirms.

It is a massively important meeting because it may well mean the end to having to be taken into Hospital and having General Anaesthetic and Rigid Cystoscopies. It will mean having local procedures and a flexible cystoscopy - nothing to be sneezed at but perhaps better than ending up (like this time) knocked about for 4 weeks or more. The other thing is no more BCG Immunotherapy treatments. Will I miss them? Yea for about 30 Milli seconds.....

I'll have to wait and see what Thursday brings of course but I'm not really thinking too much about it. I'm really hoping to shake off this damn cold and get my hearing back which would be a start!

Whoa - even heard the morning alarm

Well - what can I say, still deaf but getting better. I can hear the keys on my PC keyboard and I heard the alarm go off this morning. All in all that is a major improvement. I've still got some problems with my "good" ear - it would be the one I don't have trouble with giving me all the problems! Typical.

I can hear muffled sounds from the good ear and I can hear high pitched sounds from the bad ear so all in all I am probably beginning to get to a point where the congestion will be cleared and I can hear again.

I feel pretty weak though I was surprised about that. I have informed work that I probably wont be there for the start of the week. If I am realistic, I doubt they'd see me much before next week the way things are going. It seems to be taking a long time to clear up.

Longest I have ever been ill for

It must be about the longest single spell that I have been ill for since I was a kid. I don't remember ever having had such a set of heavy colds, or their side effects and still feeling rough this long into them. I intend, once again, to get off to bed early and dose up with various drugs and potions to see if I can continue the recovery. It is just so slow. Heard from yet another friend who has this together with the deafness. Her family are yelling at her to make themselves heard :-)

It is infuriating that I cannot get on. I do hope though that I might tackle the University stuff tomorrow and see if I can give that a go and get some work done there.

Some Improvement

Well slowly, slowly is it getting better. I can actually hear sounds in my ears and I can actually hear the odd noise full on and grab bits of conversation. Everyone sounds like robots :-) It is quite a strange thing.

I'll keep taking these decongestants. They do stir up your stomach a bit but at least things are getting better.

It's life Jim - but not as we know it

Always had a soft spot for that particular phrase :-)

Well the drops did their magic in a way - I am going to try another whack overnight. Certainly one ear is clearing up the other not quite yet but they are definitely doing something.

Let's see what overnight brings. Hopefully I can start to recuperate properly tomorrow?

Blimey these are the ticket

Nose Drop decongestants. Wow they've got to work already - it isn't pleasant and my ears are ringing and making all sorts of noises but at least it seems to be doing something to get things moving. Judging from the fall out they certainly seem to be working on clearing out my head of debris :-)

The trouble is that it has increased the tinnitus and drumming - hopefully just whilst it is clearing things out I hope. Will just have to go and sit down quietly whilst it does it.

I mean "No one's going to die!"

One of the phrases that rattles around in my head when someone gets massively upset over something utterly trivial.

A bit like the old boy who was sat at the wrong place for a luncheon and quite indignantly came up and told me so.... He was all puffed up and red faced about it.

I just asked "Did it make you food taste any different?" he said "No"

Case Dismissed!

Nobody died or was about to. How important can it have been? :-)

I like the insight you get with BC but not everyone gets my sense of proportion or humour for that matter.

Small signs of recovery

At least I can hear a tiny bit out of one ear and whilst I still remain deaf I can feel the pressure easing off my ears. Mrs. F. Is going to the Pharmacist to see if they can suggest anything. Apparently lots of people have had this and ear drops seem to be the way to go. I certainly appear to be much less congested and the steam treatment appears to have done its work.

I'll see what today brings. If I can get somewhere with clearing this up then I can work out getting fit, getting back to work etc.

Rationalising what I said Yesterday

I took a bit of a step forward yesterday in as much as I realised that I no longer have the high powerful, full on, pressure cooker of a job I used to have and that I have a quieter, manageable, nicer and altogether pleasant job. The years and years of getting ready for the year's dashing and travelling and arguing and so on are no longer there, the habit of getting wound up ready for it is a problem - I still act in that world even though it is no longer there.

I have to come to terms with no longer "being the boss", no longer doing my own thing whenever I want to do it and in some ways no longer having the rank, position, money, kudos and ego that went with the old me. If you know me, you will gather this is a massive shift if I can actually achieve it.

The "pressure" I 'think' is there probably isn't at all anymore, I don't need to walk around like some coiled spring anymore and I don't need to set all these high goals. That is easier said than done. I've always been ambitious and always been involved in high profile major projects and so, going in to work and doing a 9 to 5 isn't me at all.

AND YET it has to be in a way. Why get a second chance and let it slip? Why go back onto the treadmill of working my butt off and work away from home for months on end. Sure, 4 or 5 times the money I am on now is a good incentive but now there ARE more important things in life than money and perhaps savouring what time my Consultant and her team have managed to buy for me is a better prospect than spending that time working for some Corporate who wouldn't know talent and good value if you branded it on to their arm.

So I was working out what DO I need to do this year?

1. Make the most of being better, exercise, lose weight, improve my health and live well
2. Go to work, sort out whether a contract or permanent position don't overdo it
3. University Stuff - Make time and do it
4. Lodge and all that - giving most of it up this year so pressure coming off
5. Other Business Interests - put in some time and keep the balls in the air
6. Pay attention to family a bit more now you can

So that's my list - not much at all is it? How can there be so much rattling around in my head about what I need to do and when etc. It is all "in your head Mr Tweedy" (Chicken Run). So I just have to work on clearing it out of my head and it is gradually coming together. I certainly don't see this mountainous obstacle I saw two or three weeks ago.

I won't be able to change overnight but I can make a start by clearing out the times I have here and dumping the baggage of the past etc. Still not sure how I will battle the work gremlin who tells me I should be working elsewhere but I think I can sort this out somehow - I may just need to be creative and hope that the employer's can also be creative and flexible as the last thing we both want is for my creativity to be lost in the process.

I just hope that I can keep remembering to keep focused on the "few" things I have to work at. It isn't much, there is no need to worry about the scale of these things either. It will be interesting seeing how I cope with this "simpler life" I cannot imagine it will be easy for me but - as a good friend often tells me "you've done your bit - you may as well have a rest".

There is more of this to run - I'll try and revisit it as I work at it.

Productive but quiet day

I finally have the recipe for getting on with my work. I can't hear anything so no interruptions. It does feel a little strange to be this badly deaf. I often get this with a heavy cold but not this bad. I have just had a 20 minute session over Vick and Hot Water breathing in the steam under a towel.

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

Cannot believe that it was all so close and then all so far again this morning. I was quite encouraged yesterday as I felt I was gradually beginning to get the odd clicking sound in my ears but overnight I had to revert to the hot bag to sooth my neck and ear which were aching. I wonder if the decongestant powders aren't actually doing what I need and are working to actually restrict things and not free them up.

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.

Steam it out

A long hot steamy bath with eucalyptus oil and the hope that it will free up my poor decongested head and in turn mean I can hear again.

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

What a funny old month it has been. As I suggested earlier things would get done that needed to be done. I am not certain whether my University work can be saved but I might be able to do that if I put a BIG effort in this weekend. If I can do that, they will let me delay my assignments by three weeks which would allow me to catch up and get back on track.

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

Up early, clear head and can actually breathe quite nicely. Still got the cough that isn't actually doing anything and the profound deafness.

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.

Thump, thump, thump, thump, whine

Grrrr. All I can hear in my head. I don't remember ever being this deaf with a cold before. Apparently they tell me this one, if you are prone to that is a real bugger for it. I can just start to hear my right ear clicking in and out and catching high pitched noises.

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

An extension to the congestion charge - it would have cost me a fortune by now! No really, I feel completely bunged up. The easiest thing to do would be to chop my head off and immerse it in paint thinners for a day to clear it all out.

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?

Steve K and andyp both have dates with their GP/Consultants next week and I think both on the 22nd January.

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.

"Dave Sky-Nando - It IS your Destiny"

Bad night

That wasn't nice, it all seemed to be going well as I got myself to bed about 9:30 and sorted tablets, syrups and all that good stuff out. Mrs. F. got to bed and then it started:

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....

All making fun of me :-)

Family - great - they don't actually do sympathy do they? All I get is smirks and smiles as I can't hear what they are saying and I have difficulty knowing IF I AM SHOUTING or not as I can't hear myself talk properly either.

I hope it gets better tomorrow

What to do next

Bit of a quandary. Do I head off to the doctors as most people I know who have had this have complained of the deafness? Do I stick it out for a few more days? Don't know. It is a nuisance of the first order and not being able to hear things makes it all very disorienting. All I can hear is my heart beat in my ears all the time plus the high pitched tinnitus. No wonder it drives people mad, it is very annoying, you need to distract yourself from it.

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

I have crawled out of my pit in the late morning this time and can't hear anything that is going on around me :-) It is very surreal, especially if people start talking and then walk away from you or change their voice to quiet half-way through. I have to keep asking "what did you say?"

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!

24 Hours later

I still feel very ill, I got up about 2 hours ago and decided to come downstairs and I suppose I have been in bed about 36 hours or so. The cough is horrible and the deafness is profound. I hope that it isn't infection but viral and "keep taking the tablets". Some say that not hearing the wife is a good thing but to be this deaf is not at all nice, I can only just about hear and the TV is playing rally loud. Thank goodness for sub titles!

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.

Surfaced for a few minutes

I have been in bed and not at all well. I guess I HAD to pay for yesterday's meeting. I had to be there and loaded myself up with drugs and just bludgeoned my way through it. Of course, that strategy meant that when I got home I went to sleep and didn't wake for 12 hours. When I did, I was looked at and told you aren't getting up today and have been asleep since then as well. The cold is pretty horrible and my ears are still blocked and I can't hear much.

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.

Its over

It went really well so everyone told me. I could hardly hear a thing and I am concerned that my ear has some serious damage to it as I detected blood leaking from it this evening. Will my troubles never just stop.

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

Well - I have had a shower - quite civilising I always find and found that my left ear was filled with some clag that I have removed - I am still getting tinnitus but I think that I can get over these but not sure what sort of mess I will be in when I get home.

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

Just after I wrote the blog - the lamp in the toilet had gone and I couldn't work out how to change it such was the headache and pressure build up. My ear was in bad order - I had trouble with my right ear when I was a kid but that one doesn't get all the grief when I get a cold it is the left. This time the pressure kept building and then I could hear all sorts of bubbling, popping and creaking sounds followed by a large crash and bang as whatever it was gave way and my ear started leaking clear liquid and the tinnitus was the worst bit.

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

Now it is a night of utter frustration. I don't know what to do with myself. I've had a few hours sleep, I've had all the recommended medicine I should have to day and I am up with ear ache, headache, coughing and on and off congestion plus the hot and cold sweats. To cap it all the light bulb in the bathroom just blew and all of a sudden, I can't get to sleep, I'm anxious and just don't know what to do with myself.

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.

That's Nice

The University have offered to allow me a 3 week gap to see if I can catch up with my studies. I'll think about that over the weekend. If I can just shake off this cold which has moved to the one deaf ear, hacking cough and sniffy nose stage now, I should be able to get onto that I hope.

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

Now I've got the blocked nose and sore throat and headache from hell. Great :-) I've got lots of talking to do tomorrow in a large hall with about 100 people in it and it would be my luck that I'll have a voice of a shy 5 year old instead of one everyone can hear. Add to that I also have the sneezes - that took me by surprise as I was typing this too. I'm also a bit concerned about the throbbing around my bladder area - it could be palpitations - perhaps it is the bladder flexing to get rid of the other scabs. Whatever it is, it is noticeable and distracting too.

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.

OMG Ooooooooo YUK!

Oh boy - could it get any worse. Went to the loo about 8 pm and had a long load of debris and blood and bits firing out and thought Oh no! It was horrible and of course a little blood goes a long way when watered down but this was loads of bits and pieces. I thought someone had been up with a Chimney Sweep's broom :-)

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 have had "one of those days" today. The Printer gave out, suddenly I'm expected to sort out the Table Plan for Saturday - as if I haven't got enough to do on the day. In addition to that, they can't find my next day delivery that should have been here on Tuesday and can't even tell me where it is until tomorrow which will be too late by then.

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

Well, how about my laser printer for one. It gave up the ghost about 10 minutes ago just as I was trying to complete a run of brochures. That has left me about 30 short of the target number. It is just the cartridge but what a nuisance.

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.

End of a Day I'd rather forget

Mind you I did get stacks of things done but I still feel like poo and I have this irritating cough that sends a shudder through my chest and stomach and groin which is really uncomfortable.

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

Back to clear this time which is a relief - I guessed it wasn't a problem but you never know with these things.

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

A stream of bloody urine to grab your attention is there???

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 went out with two friends yesterday to have a few beers and lunch and to edit and review the documents I need to print off for Saturday.

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.

Changed Date

I thought so. I sent off an e-mail querying the date for the Out Patients Appointment as late February really did seem too far away.

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

Steve K and I have mentioned that awful moment you do your first Pee after biopsies or Peek and Poke and it is as if you are p1ssing Razor Blades or fire.

Well in this case I believe they took this a little too far. We used to say "only in America", but it can now also apply to Australia :-) Enjoy....

http://news.bbc.co.uk/1/hi/world/asia-pacific/7812875.stm

Ventured Out

It is very slippery out on the roads and pavements and a couple of friends very kindly picked my up and dropped me back from the Lodge of Instruction meeting tonight. I have to say that I was really worried walking on the slippery surfaces. However, I managed OK and it was good to get out. I felt a bit cumbersome having to keep getting in and out of my Chair and walking around but I will be alright by Saturday. I need to set myself that target at least!.

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

Nothing like giving yourself a bit of pressure is there? I just rechecked my assignment dates and they aren't the 15th January when I thought they were they are this Friday - the 9th. GULP. Guess who hasn't even started doing the lesson let alone the assignment.

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

Thank goodness I decided not to go to work this morning. We have a thin layer of snow and ice and one slip and I'd no doubt have felt that all the way. I'm still not right. Funnily enough at least my mind is clearer than it has been for ages and I don't have that "heavy head" any longer. My stomach still feels like it needs a few weeks toning to get back to normal. I cannot fit into my ordinary trousers as they feel too tight and that's nothing to do with Christmas either as I haven't eaten huge quantities of food.

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.

Getting Somewhere Now

Thank goodness that I felt good enough and I actually got on and did some work today. A good run at this tomorrow and I'll be happy as I might get to knock this out in time for the weekend. I need to produce about 100 booklets of about 20 pages each.

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

I managed to go to the party and survive although standing on my feet for the best part of 4 hours has played havoc with my back and so I am resting in my chair with my feet up but also with the laptop so that I can continue to work. Additionally I've started passing the odd scab when going to the toilet. That is to be expected at about two weeks and isn't a cause for alarm although it doesn't sound or is, in fact, pleasant. It is a good thing in a way as I can gauge that I am getting better and can start to do more active things without the worry of starting to bleed again.

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...

Living Beyond Cancer

This is a good UK resource but I reckon as applicable as anywhere else. Interesting that Neil, aged 51, same age as me, felt victimised in his workplace. I felt that people took a very different view of me after diagnosis. Click on the image to go to the site.

About Time Too

At last someone is doing something about the other side of cancer not just the treatment.

http://news.bbc.co.uk/1/hi/health/7752247.stm

Rip Van Winkle

Yes - another 12 hours sleeping and I generally have another 1 to 2 hours in the afternoon too. It is getting kind of strange that I should be this knocked out but then again, perhaps the body is repairing itself. It makes you wonder what on earth they did to me.

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?

I have to ask quite what they did to me this time. I know they've told me before that as these are biopsies they tend to do a belt and braces approach to the samples and dig far deeper than they would if scraping off a layer or two of cells when doing a TURBT.

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.

Doesn't seem to be getting any more predictable

I again slept for 12 hours or more. I suppose my body needs that to repair and I still feel out of salts and a bit lethargic. I can't believe that my shoulder and the top of my hand still ache as much as they do even 11 days on.

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 :-)

Curiouser and curiouser cried Alice

It's late in the evening, I've just had a lovely call with my relatives in New Zealand which was totally out of the blue.

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

I had enough medication to make it to see in the New Year but went straight to bed after watching the London fireworks on TV. I slept for 12 hours. I felt better when I got up and I have been taking it easy today. I've had a little bit more medication.

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.

Feel Like Poo

I have had a really bad morning and this afternoon have had to admit defeat and just sit in a darkened room. It felt fine this morning and this afternoon I feel all Flu like again but not enough to go to bed with it but certainly enough to take some medication and have a few hours sleep in my chair.

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.

Things Have to Change

I looked back at this time last year and the year before to see how I was feeling and actually the same theme runs throughout. This time last year I at least acknowledged that I was clear and about to have another lot of BCG with a biopsy operation in April. The year before, I completed my first lot of treatment and still had CIS as far as I knew then - in fact it was downgraded to precancerous (ie not cancer but deformed cells).

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

I've been out a week and I feel worse now than at any time. I slept in until 11:30 when my Mum, bless her, phoned. I can't sit here much longer - I've done 30 minutes and the space inside my pelvis is re-arranging itself back to where everything should be in order before they stirred it around with a big stick. It is the strangest feeling, not uncomfortable or painful, just strange. Having said that, I still don't want to be sat at my PC all day - even though I should. I think I will go downstairs and use my laptop and try and do some studying or catching up with the history document I am writing.

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.

Only hurts when I cough

I have an occasional cough which really rattles me about and hurts my stomach and groin area. I'm guessing it is the general anaesthetic and my body getting rid of it - there is no cold to go with it. I've taken a few cough sweets which has temporarily relieved that. It has been a strange day as I've been trying to get up to speed with my work and yet I can't sit down at my desk for more than an hour or so and I managed to fall asleep again ts afternoon for a couple of hours even after having plenty of rest last night.

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

Obviously it is too early to sit at my office desk for as long as I did this morning. My stomach is hurting, as is my hand and also where that thing came out of my shoulder. In fact, today I've felt as bad as I did this time last week as I was coming around. My shoulder aches and my urethra - well it is probably trying to settle itself back into its normal position :-)

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

Interesting thing, thinking back on it and chatting to the Registrar last week. He, and in fact many of the Registrars, Doctors and my own GP, were really interested in how I got on with the BCG. I was told early on that it would be pretty severe, not to travel, not to fly etc. I was doing long journeys at the time but was warned off.

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'm still feeling it - gee they must have pushed and pulled me around a fair bit last time. It feels as if they gave me a TURBT not a Cystoscopy for biopsies.

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.

You tend to forget

How knocked about a General Anaesthetic makes you. I went out last night and again it was a nice do and lots of party food and beer etc. The trouble was I was really noticing it yesterday. The thumping pain on the back of my hand from where the Cannula was inserted and the bruise coming out now are reminders as is the very slight stinging whenever I go to the toilet.

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.

Tired

Dazed and Confused. I succumbed to a long lie in yesterday before finding the Laptop had expired. A bit of a blow is that as under normal circumstances I'd have backed it up recently. It is my main e-mail client so I've lost my e-mails for the past 2 months at least.

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.

Not good

My Laptop Computer appears to have died. That will make life interesting as I was about to do its back up earlier this week and didn't get around to it. I'm trying to work out what is on there that I need and I think that probably includes all of the latest work I completed on the history I was working on. I now need to check whether I put that in a share and where that shared area was. It could make next week very interesting indeed if I am trying to complete a document that I have already written and lost.

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.

Merry Christmas

To all my fellow sufferers and warriors and survivors - have a wonderful Christmas. As a friend of mine who survived his cancer calls us The League of Extraordinary Gentlemen (its OK Ladies you are included too). We are indeed that - it is a club none of us wanted to join but now we are here, we are all extraordinary n'est pas?

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?

Scar Wars VI

Return of the Bed - I

In a Galaxy Far, Far Away

Our Hero returns having been trained by Yogi (sorry Doug it fitted)

Our Hero has lost his sense of Tumour

All that is left of the Carcinoma in Situ has been blown away

The BCG and its Forces of Good have smashed the remaining cells of resistance

Once again the bladder functions as it should

Our Hero, keen to ensure no further outbreak of hostilities goes once again into the NHS

Filled with Trepidation (and other mind bending drugs) he enters the Theatre of Operations

Just One More Time!

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.