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.