Appears to be gone

That was a strange episode yesterday, I don't have too many of the symptoms left this morning, I'm up early and raring to go as usual. I was due to go out last night for a few beers which I had to cancel which was a bit of a shame.

Strange - Flu now gone

How strange is this? I got up this morning got to my desk and felt really tired and all I wanted to do was go to sleep. I've spent most of the day collapsed in a chair and decided to have a few paracetamol this evening and I feel fine again now. Hopefully that is it. A friend reckoned it is something that is going around and lasts anywhere between a day and a week!

Great - Flu!

Just what I needed. I was alright until about 9 this morning and suddenly I felt really awful. Been lazing around all day with some sort of mild Flu symptoms but the worst bit is I just don't feel like doing anything at all. It is too long ago since the treatment to be that. Its bound to be the usual thing, stop work and get a cold!

Everyone is home for the holidays

This should be interesting. Everyone is home and I am normally stuck in the house on my own for hours on end - I wonder what the dynamics of this will be? I'm the only one up at the moment and all is quiet - let's hope it stays that way

What on Earth am I doing here clock watching?

I just caught myself at it! What an idiot :-) I have just been working away cleaning up some files and sitting at my PC and thinking - "roll on 5:30, I can pop downstairs and relax" Then I looked up at the clock and thought "Doh! I'm on holiday this week - what an utter wally!"

Maybe they took my brain out when they operated :-)

Why do I keep doing this to myself?

The trouble with looking stuff up on the web and then reading it is, occasionally, you can take it out of context, don't understand what it is actually saying, or be skilled enough to read exactly what it is getting at.

There is a great deal of stuff out there and I come across new bits of information all the time. What I did today was to follow someone's link to a presentation which was a little depressing as it has figures that looked, to me, far more pessimistic than I'd been led to believe the success rate was for BCG treatment. I certainly don't like the idea of "highly likely" tumour recurrences - that would put me off - but apparently that does happen a lot. I'm kind of hoping that I'll get maintenance but even that doesn't rule out getting more tumours.

The other problem is how do you interpret the statistics - they are probably normalised somehow but who is actually "normal"?

So - try not to do too much of this without putting it in perspective. I do have to admit though that having read this latest one I feel quite down. That won't last longer than an hour or so and I'll be alright again but it can be a shock to the system to read facts and figures. You do need to find out the data behind it and also read some of the things like sample size to start to realise that some is good science and the other stuff, due to the small sample, could be out by a long way.

Perspectives

I was out this morning and talking to an old friend who has to have heart surgery. It was an interesting conversation as the worry is that it is 4 months to get the angioplasty and "I could drop dead tomorrow!" So one of the things he is doing is sorting out all the "dead" things in a "Dead File" - who to contact, what bank accounts and insurances are held where and so on. That brings it home to you having to sort these tings out. I have most of my stuff well organised but I don't have a dead file yet. It wouldn't be a bad thing to make sure that everything was in order and available rather than trying to sift through my office and find it all.

Bit of a sobering thought. I guess if I did it next year as a project it may be useful - not that I am planning on doing anything that would need it but just in case of course :-)

A Real Treat

For the past 6 Mondays I have missed my regular meeting with a bunch of very good friends. So tonight it was brilliant to meet up and have a beer before Christmas and a catch up of all the things that have happened over the past 6 weeks. We put many things to rights of course and once all the problems of the World had been resolved, we went on to discuss the finer points of politics, religion and some of the simpler issues. We had some fun discussing the interesting application methods of my recent therapy (as blokes are inclined to do) of course when it got to anything that may be eye watering or even slightly "below the belt" they gave up on that! :-)

So nice to get out and meet up with my friends again - what a relief to still be able to drink. The only problem is my clothes stink of cigarette smoke - yuk! OK I know I used to but suddenly I am really very sensitive to it. I noticed it with people smoking outside the Hospital - it really makes me feel quite ill these days.

I am off again tomorrow resolving someone's PC problems and I have now managed to track down some legacy equipment for the other problem I inherited this morning. That is my lot for today, I've done more today on my holiday than I would have done if I'd gone to work!! I must be doing something wrong...

A different sort of Monday

Normally I'd be lying down and getting ready for the side effects of my BCG treatment but that finished last Monday. It has been strange today, almost as if something was missing :-) Really though, I don't miss it.

I am meant to be on holiday, so far I've fixed three PCs today and I've another to do tomorrow! None of them mine I hasten to add. Trouble is I'm not really a PC technician - I know about it of course but that is about all.

Glossary

Rather Than re-invent the wheel (I probably could but it may not be round or circular) here is a list of sites that have a glossary of terms that may be of use:

From MedicineNet

M D Anderson Center

From the Bladder Cancer Web Cafe

A brief set from the latter site:

TCC =transitional cell carcinoma--most common form of bladder cancer
TUR= transurethral resection--minimally invasive surgery performed via the urethra, also known as TURBT-transurethral resection bladder tumor
IVP= intravenous pyelogram--test for checking the kidneys and ureters
CYSTO =cystoscopy, inspection of the bladder with a lighted instrument.
RESECTION =(surgically) cutting out.
CIS =carcinoma in situ (flat tumor)
BCG=-Bacillus Calmette-Guerin -immunotherapy for superficial Bladder Cancer
TURB, TURP = TransUrethral Resection of the Bladder or Prostate
RC = radical cystecomy (surgical removal of the bladder and prostate in men, bladder and reproductive organs in women)
MRI= magnetic resonance imaging, diagnostic test
CT= computerized tomography, diagnostic test

End of Treatment and a difficult question

Has the Treatment worked?

Difficult - I am not going to know until late March at the earliest. I'm not sure that my feeling well and feeling great actually means that much, it may be a state of mind but has no basis in fact I think.

So it is really difficult to answer and again if you think about it you'd expect a treatment to work pretty quickly especially as you have finished the course.

I have to explain both the above of course so that people understand that whilst I feel well, the treatment doesn't really kick in until about now and that I have the anxiety of three months to wait until I get to find the results of this work.

I'll start exercising as soon as I get into shape

I have started doing a lot more now. We are going out every Sunday for a family walk and I am beginning to get out and about a bit more. It is actually quite difficult to put a regular period of time aside for exercise as I often find that I work away from home or I am travelling. I think I am going to start with taking 30 minutes walk each day and see where that leads.

I am blessed with having the countryside just 5 minutes away and a large choice of footpaths and bridleways so at least I won't be trudging around built up areas.

Just realised something

I suppose some people must have a real problem with people who have cancer either from some past experience or perhaps not knowing enough.

Why do I say that? Well, I have had to cancel all sorts of engagements and meetings and I have always sent apology notes explaining why I cannot attend and giving a very brief update of where I am now and how I hope to attend again in the New Year. Not one person has dropped me a line back acknowledging that I have sent a note or apologised, asking me how I am or anything like it yet they still send the invites. I'm not particularly worried about that but it crossed my mind this morning when I saw an invite to a meeting and it can only have been last week I wrote and told him that I would make January onwards.

There's none so queer as folk (North Country Saying)

Big day today

My wife is 49 years and 365 days today. My parents and my brother and his family are making a long journey down to be with us, later more friends will arrive and I thought I'd better blog now as I won't have time during the day.

I hope everyone concentrates on the birthday and not how I am. I imagine for those around me it must be pretty tedious for me to always be the centre of attention. Right off to blow up some balloons, get breakfast on for everyone and generally get myself prepared for non stop catering.

Set E-Mail to auto respond

Telephone diverted, e-mail "not in office" auto responder on, I'm outta here!

Demob happy

Yes, only an hour to go and I'm off on holiday (vacation) for the next two weeks - fantastic! There is a celebration in the house tomorrow - someone is 50 and it isn't me :-) So we will have a party running almost all day.

As a celebration of making it through the 6 BCGs I have put a bottle of Champagne in the fridge with the intention of marking the end of this year's treatments.

My daughters and I will be preparing the house and the food from early tomorrow and I am sure that we will have a great day with family and friends. If there is no blog tomorrow - then you'll know why.

Strange old night

Yes that was strange. I'd been out for a few hours and just couldn't get to sleep. Nothing particularly on my mind just couldn't sleep hence the late blogs and conversations with the US.

Anyway, it is my last day at work today and I then finish for Christmas. I can take a few weeks off, the treatment is behind me and I can concentrate on other things for a while. I might even take a break from blogging for the odd day

Learning a New Language

Yes - it IS going to be a long night - I am wide awake at 2 am. I just had a chat online with a buddy in San Francisco and it occurred to me that there is a whole new language to learn when it comes to bladder cancer. I was looking on the bladder cafe web site and the contributors regularly rattle on about grade 2 tumours, invasive, TCC etc. It takes a while to get exactly what everyone is talking about.

Given a little time it is easy. TURBT sometimes TUR = Transurethral Resection of a bladder tumour. CIS = Carcinoma in Situ and so on.

I will get around to pulling together a glossary of terms as otherwise no one is going to know what is going on. The problem also is that a TURBT is specific to the subject although you can get something similar in Prostate Cancers. So when most people would have heard of a tonsillectomy you really need to find your way around a bladder and all the various stages to understand what is going on. I'll try not to use any buzz words but if I do I will ensure that I explain what they are before hand.

Further Stages of Kübler-Ross Cycle

The normal state is steady

Then comes:

• Shock - Initial paralysis at hearing the bad news
• Denial - Trying to avoid the inevitable, disbelief
• Anger - frustration and an outpouring of pent up emotions
• Bargaining - Seeking (in vain) for a way out of this
• Testing - trying out different scenarios and solutions
• Acceptance - finally finding a way forward and eventually back to a steady stage again.

This can be applied to not only grief stricken people (loss of a loved one for example) but also to those who are diagnosed terminally ill, it can equally apply and be used for change in a business context - someone losing their job or their job changing. I think it applies equally well to being diagnosed with a disease like Cancer too. If you read this blog you'll know that I am newly diagnosed and under the first set of treatments. I think that I have come through shock and denial although I'm not sure that denial lasted long enough or whether I had enough time to do that. Anger - well yes but not a long period of this, I have more trouble in small things making me angry (looks like a bit of denial there doesn't it? :-) ). I'm not sure if bargaining comes out of this as it is out of my hands to some extent. I have to do what is right and my Specialist advises me and I take their advice and keep my side of any treatment regime. Testing - this blog is a way of testing and people like my guardian angel drop the odd note back to me to tell me what they read that I said and how they read it (if that makes sense - they may see a hidden meaning or signal and let me know). Acceptance. I am definitely not there yet but I think that you may have to accept a number of different things here:

• Accept you have Cancer
• Accept what that means to you and your life
• Accept what that means to your family and friends
• Accept the treatment and the various routes that it could take (good and bad) - this will take some time I think.
• Accept that inevitably you will have this for the rest of your life or be watched over (in and out of Hospitals with things stuck in you) for the rest of your life. I haven't quite got the measure of that yet
• Accept that it isn't a short term fix and you will have to adjust your life etc to live with it
• Accept that it just may kill you - got to get to grips with that - I saw the demons when I was diagnosed and I don't want to go there again.
• Accept that I may not be able to tell some of the people who are nearest and dearest to me my darkest fears and worries as I'll probably hurt them more than any benefit I'll get for off loading those. I'm not sure what I'll do about that. The blog can only go so far, the dark places are very dark indeed and perhaps a trained counsellor or a support group although I don't feel the need for that yet.

So a lot to do before you get there but I do think that I am making progress, that I am working my way through but more than all of that and importantly, I feel that I do know that I am going through these phases and I have enough people around me to help me if I get in trouble with any of them.

Still Awake - Thinking

My guardian angel dropped me a line and as always, made me think differently about the anger I was feeling. Interestingly enough, I know about this and from my Consulting days - especially when undertaking major cultural change or business change, staff can go through one or all of these stages.

It is based on the Kübler-Ross Grief Cycle albeit that no one actually dies. It Has a series of stages:

• Shock
• Denial
• Anger
• Bargaining
• Depression
• Testing
• Acceptance

It is actually quite a complex subject and no one size fits all. Some people get stuck in the stages, some get the stages out of order and flit backwards and forwards between them, some miss out stages altogether. It was (and indeed still is) my job to ensure that staff going through a change at work were mentored through the change and that things like the shock itself was softened, that there was good communication that we could use the bargaining time to get acceptance and buy in and by minimising any time in the depression phase we could make the cycle as short as possible. The reason we were trained in this technique was that some people got to the depression or anger state and just got deeper into them without coming through the cycle. We also had to make the cycle as fast as possible and as manageable as possible as we would inevitably lose production. In the early 90s we were going through massive changes and huge losses of jobs and so we had to be careful about how we communicated, managed and delivered the changes.