What it looks like in a plan

Click the image to enlarge it.

I decided I'd map out what the last 5 years have looked like in terms of Operations and Treatments and Flexible Procedures and the one IVU. I added some traffic lights (it's not my fault - I'm a Program Manager and I need these things to show I can do my job! :-) ).

It's a busy old time and if you consider that in 2007 when I was trying to help set up that other business - I was having BCGs and 2 operations. In 2008 I started at the Charity and even then my schedule was pretty bad - good grief I had no idea it was that disruptive. If you consider that for 24 hours after BCG you really can't do anything and even a day after that you are unlikely to be at your best you can see how quickly time off work would accumulate. There are a total of 24 BCGs so that's close to 24 days off but quite likely to be close to 36 in total as it would be a half day on the Monday and most of Tuesday. Each operation and there have been 10 would have meant around a week off but in two cases it was close to a month (the first TURBT), 2 weeks (Re-TURBT) and last years Operation took me out for about a week and a half. That's 4+2+7+1.5 = 14.5 weeks in terms of operations and time off. Add to that 10 out patient appointments of half a day (5 days) and the IVU (1 day) and then the 3 flexis at half a day (1.5) and that adds up to around

36 days + 72.5 days + 5 days + 1 day + 1.5 days = 116 days or 23.2 weeks. If you add the days that I didn't go to work because of Post Cancer Related Fatigue - it could easily top 25 or 26 weeks - around about half a year in total. In 5 years, 10% of my time has been used up in some sort of procedure, treatment or recovery.

It will be 5 years this Saturday since that fateful day in 2006 when my life altered for ever. What a Roller Coaster Ride. I'm actually pretty glad I made it to the 5 years - I didn't think that was going to happen - or I wasn't sure it was is probably the right way of looking at that.

It hasn't all been a negative experience though. I'm a quite different person now and I have different values and a different outlook on life. It's not quite been an epiphany but it has changed the way I look at material things and life in general. In a way I wished there had been a more painless way of finding this all out :-)

Bladder Cancer may be a bit different to other cancers (but I don't know). You would find it difficult to know you had it - you can't actually feel it as such. However, the treatment they give you (and I'm sure this is pretty much the same for other cancers too) is the thing that makes you ill, fatigues you, and dare I say it makes you feel ill (of course it is making you better - therein lies the great irony of treatment - it DOES make you better but at the same time makes you feel ill).

So I'll leave you with the chart to ponder. Now work out what all those visits must have cost? 10 Operations, theatre staff, anaesthetists, nurses, cleaners, caterers, porters, drugs, equipment, heating, lighting, back room staff etc. 24 BCGs, the drugs, the throw away equipment, the nurse(s), the bio hazard precautions and the disposal costs. That's why bladder cancer is the most expensive of them all. I could be being monitored for another 25 or 30 years - I'm in my early 50s so it is possible, now think of the cost? I'm rather glad that I'm not paying directly for this myself, rather my NI payments over the years are.