Ok, we like the guy so far. He was pretty no nonsense– seems like a guy with something to prove and is competitive. To the point, no time for chit chat, but was not the kind of doctor making his way to the door when we said, “we have some questions”….. His nurse was very thorough and helpful as well. He was up front about the fact that there is no established protocol which we knew. He said generally they treat it as a colon cancer type issue which we also knew. 5fu, folofox etc etc, the same drugs and protocols as what we have been reading about, so no surprises.
He asked a lot of questions too and more importantly, didn’t blow off self reported symptoms which both Kath and I really paid attention to. Good stuff, as that could have been a deal breaker. In fact, when we asked how we would know if the treatment was “working” he said there were not any markers we could test for and really it was just patient reported symptoms that would cause specific investigations and would need to be closely followed. So when we mentioned new pain in her upper spine, he said he would order a scan to investigate now. So that was very reassuring he wasn’t going to piss around. There will be of course yearly scans and tests for any obvious return, but he warned us, this type of cancer can be a pernicious little bastard regularly returning….. So, will have to get used to life like that, but better that than no life
Speaking of little bastards, we also got clarity on the pathology report. It’s often hard to tell from the word choices used by that profession. So when they say, “we favor duodenal as the primary” does that mean its a guess? Not sure? Pretty sure ? And considering so much is based on the path report, is this person experienced? Good? Reliable? Yes, very and very. So that bit of info was quite reassuring. When you think of it, everything going forward is based on the pathology report, so if they get that wrong, everything potentially gets messed up.
We had a good chuckle at doctor’s note taking. Her asked about family history, health, longevity and if there was a history of cancer or not. He started to draw a family tree and made a couple of stick figures. He put Elaine on one side, drew her father on the other and said, “well, your mum is here so she is obviously alive and looks healthy. What about your father? ” When kath said he died of cancer, he just put a big violent line (STRIKE!) through the figure he had just made! We both nearly burst out laughing. It’s quite macabre yes, but you really draw on gallows humour to get through this.
There was a really a lot of information today. Good thing the nurse gave us handouts. Side effects out the ying yang. More drugs to manage those side effects. Diarrhea, constipation, nausea, vomiting chills etc…. In other words, just feeling miserable. So, just as she is feeling great, she is ready to get the crap beat out of her. But, on the plus side, she is stronger now and more prepared to give a good fight and she will need her strength. It all start as early as next week. She is a little anxious right now, but hey, who wouldn’t be. Nuclear and chemical war in your guts doesn’t exactly sound like fun, but she is toughing it out.