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.