thoughts from the front line - 5

On Wednesday last week when we had the appointment with the renal specialist I left my phone in the car proudly displayed in it's cradle for all to see. Me stupid. It was just 5 minutes before my appointment time when I realised it so I asked T if she could go and get it for me or rather I said yes when she asked if she should go and get it. Luckily a smashed window was not found and the phone was safely retrieved. So yesterday, results day, I parked the car in the hospital car park and went inside to register at the outpatients clinic and, yep, I'd left the phone in the car again! Me double stupid. But I blame the cancer so that's all right then :-). Can't remember someone's name, I blame the cancer. At least it's a get out of jail card when needed. But, being male I couldn't admit to my phone stupidity two days running so I kept quiet. It added to the tension of the results meeting but I'm sure nobody noticed. We cancer patients get pretty good at hiding emotions... But I'm getting ahead on myself. Driving to the appointment I had my list of my five or six questions I needed to ask in my head. T had her 37 detailed medical, technical, emotional and comprehensive list written down in a reporters notebook with spaces under each question for the answer to be written. Men and women are different! :-). And as we drove to the hospital chatting two further questions were added to her list and mine was now totally redundant!! Arriving we booked in. Corridor C first on the left. It sounded like instructions for a move in a new type of chess game. Wii chess perhaps? Anyway, walking into corridor C we see a sign announcing my consultant's clinic. I handed in my appointment letter and the nurse started to look through about 50 sets of hospital notes spread over many piles on the table in front of her. She couldn't find my notes. "Oh your seeing Krystina, I remember now as she turn to a different table against the wall behind her where she found my notes. It wasn't difficult as my notes were the only ones on the table. Alone, totally alone, my medical notes had been selected to be separated from all the other patient details. I did wonder why but as requested we went to sit in the waiting area. Bloody hell, a room of about 40 chairs with 38 people sitting and waiting for their appointments. We sat down and, as you do looked around at my fellow sufferers and their other halves, friends, mothers etc. We, of course, were some 20 minutes early for the appointment so I took out my selected reading matter and engrossed myself in escapism and humour. At about 5 minutes to appointment time I see Krystina go into my consultants office "Won't be long" I tell T. I tried to continue to read but gave up. It was nearly crunch time when I would find out what my cancer was, how aggressive it was and what treatment they would recommend. I was, as they say, a tad nervous. We were called in. My consultant introduced himself to T as they hadn't met before. Krystina sat on the table to the side, very relaxed. I put the umbrella, my reading supplies and car keys on the floor next to my chair - it was something to do and I know that sitting with them on my lap would look strange. My brain was now working at 100mph. Why were we in with the consultant? The meeting was just going to be with Krystina our had I misheard - no, I know that they said that my appointment was with Krystina so why the big man himself? "Well, it's not good news. You have a very aggressive cancer as we thought but it is rare. In fact very rare. There are only about 40 reported cases in the world, ever." "So, I'm special" "Yes, you're special" Cool, my consultant thinks I'm special. :-) "It's what we call "clear cell adenocarcinoma" usually, but still rarely, in the kidneys but in the bladder is very very rare so we have no idea of prognosis really" The funny thing about this news is that it made 17 of our questions redundant as they were linked to the cancer we thought it was. But T rattled off the remaining 20 and the consultant answered with confidence. Never phoned a friend or asked the audience. He did good, top marks. Especially the one when he confirmed that he would be doing the op himself. Subsequent research has now indicated that I am even more special. Of the cases reported worldwide less that 10 of the 40 have been men. Only 4 cases seem to have been reported in detail, two in America, one in Japan and one in Italy. If there is a secret database with more information we couldn't find it! So my prognosis is?? Don't know. A bit like it was before the cancer came. Could be just a few months or another 45 years (I have a plan to get to 100 - you'll all be invited if I do!) So how do I feel? Strangely very good but realistic. The op date has been chosen for the 13th August and no chemo (no point apparently as clear cell cancers do not respond to it) and the timing is just brill as we have a great weekend already booked up for the weekend before the op and we have now decided to bring forward our engagement party to the Sunday rather than the bank holiday weekend as planned. At this point you can say "Aww, that's wonderful" :-) I'm not looking forward to the op but I am looking forward to getting home after it. Minimum 8 days in hospital, 3 - 6 months recovery time after, tubes, pain, learning a new life style with a bag being strapped to my leg but hey, I've got a whole future to plan and I'm sure that my medical team will be following my case with great interest as I'm "special" :-) If you're going to the Banstead booze up next Saturday I will be signing autographs... Keep smiling folks :-) A xx