This terminal diagnosis lark messes with your mind. I negotiated the “oh my god I’m going to die” stage fairly quickly and, I think, fairly well. After all, it was always going to happen at some stage. Indeed, BBC2 at 9pm on Wednesday has a programme about a dozen people in a similar situation to me. I think the phrase “It’s a live sentence, not a death sentence” is used. Yes, I get that.
But that doesn’t stop you thinking about it. I heard once that men think about sex seven times an hour. I think about having a terminal illness more often than that. Hey, the sex thoughts are still there too! I rarely think about death itself or the painful drugged up bit before it comes though. But I am thinking about the now and the next.
I’ve written often about current and possible future treatments. And it’s more than possible that my mind plays tricks with how I’m feeling. My paranoias! That’s not to say I’m running around like a madman screaming. But niggling worries do need to be self-managed to ensure I don’t become a pointless wreck of a human being.
Paranoia A is “how long will the afatinib work for? And will I be able to move onto osimertinib afterwards or will that be the end of my effective treatment?”. It’s the mild one that’s always there and remains. Average survival is 32 months from last December with the drug. But I’ve read about a bloke who came off it after six months. He didn’t post online much longer after that. I’m six months in. There must be a crowd who are well over 32 months to make the average what it is. But I haven’t found references to them.
Paranoia B is “Things are changing with how I feel, is this the end of my afatinib treatment?”. My side effects of spots and diarrhoea eased quite impressively a few weeks back. You’d think that’s a good thing. But it could also be that the effectiveness of the drug is now less. So it’s a bad thing. And that one tumour I reckon I can feel seems to be hurting more. Or am I imagining it hurts more? Or is it actually bone regrowth rather than a tumour? And does it only hurt after I’ve been energetic? And if the drug is less effective and the tumour is growing again then that’s the end of the afatinib treatment.
You get the contradictions in your head. But the monthly X-Ray and quarterly scan should be what triggers the truth. How I feel might not be how I am. The mental games don’t necessarily match the truth.
Paranoia C is where I am today. The side effects are back and have been for a few days. That’s good then, isn’t it? Well maybe. But what if the drug is now working harder because the cancer is working harder? Does that mean that defeat is just around the corner? And what if that interferes with the Boston and Chile trips? That would be a travesty! My face is a greased up zit machine right now.
C is the tough one because I know I’m playing contradictory mind games with myself. It isn’t particularly helpful or constructive because, after all, what will be will be.
I’d rather just be thinking about sex!
I’m also quite happy with my “now” in life. The trips are great. The planned trips are great. I’ve got a social life of sorts and the football season ended well. It’s good and despite knowing it will, I don’t want it to change.