Thanks to everyone for their support. Yesterday was a good day with lots of bucket collections going on at the match and the profile of this disease was definitely raised.
To answer Lyn, work are aware about what I am doing, everyone is supportive. Another guy in my team had PC last year G7 and had his removed, took a year out. For me I think that despite my bravado they know that it is very hard and at this moment it is not so much about the physical side of stuff (although it's there in some form most days) but it's the mental side of my prognosis that is more disabilitating. The running is just about the only thing that distracts me from that and makes me think normal. I wake up 5+ times every night, have not slept more than 4 hours non stop since October and am very absent minded at random times during every day. After any kind of sustained effort eg running, going to the shops, sitting to watch football etc I need to do nothing for a couple of hours to recharge. My journey to work is over an hour of trains and tubes then the meetings are more trains/ tubes to client sites so I could not suddenly duck out in the middle if I needed to as am often 3 hours from home, I would not make it back home in one piece. Work is also a haven of grabbing fast food or no food in between stuff which again would have negative outcomes for my overall ability to cope with treatment. Add to all that lot that I spent 3 days at hospital last week, 2 in the coming week etc then my usefulness would be questionable.
I think if I was at work I would be far less healthy and as such be off sick however I do get how some may feel who are not aware. Fortunately I have worked for the same employer for 33 years, been a top performer, am relatively senior, know my direct line managers almost to the top who are all male, older than me and who no doubt are just thankful it is me not them who has this bugger of a disease.
Once I have run the marathon I sense that my body may slow a little bit as the constant semi adrenalin and focus is definitely helping me right now( although it's possible that I will be given a last minute place in the London marathon 2 weeks later if I can handle it!).
I guess I am lucky re my employer is the bottom line as Lyn I think would be spot on for many so a good point for everyone in my situation to consider before being too extrovert about what they are doing.
Kev