"I want to ask you a question," I said to Tracey. "If it had been you who was in my position, how would you have reacted when the oncologist suggested going back on the full dose of Avastin?'
I asked this because I had seen concern in Tracey's face when he put it to me.
On the way to the hospital I had said, "there's no way I'll ever be going back on a full dose of Avastin. It would destroy my kidneys within weeks."
It's not the first time I've said it and it was something that we've always been certain about. But that was based on the premise that kidney damage was the overriding concern.
"I can't answer that," she said. "Not in a meaningful way."
"Because I'm not you. I see daily what's happening to you, but I'm not on the inside. You have to be on the inside."
She was right. Unless you're exactly the one who thinks the thoughts, wakes with the conscious realisation that you're still alive, feels which limbs move and which don't want to and the cramps when you move, feels the tremors in great waves down the arm and right side, feels pulsations in the left arm, feels the surprise twinges and dull pains in internal organs, feels the seizures and the headaches when they come, feels what it's like to stand unbalanced and what it's like to come crashing down to the floor and lie helpless with broken bones, feels what it's like to surrender bit by bit almost every freedom you had, feel the emotional pain of putting someone you love through a terrible form of hell with no idea how and when it might end – it's impossible to say what decision you would have taken. And those are just for starters.
Certainly it had to be my decision. Yet when it came to it and we discussed the pros and cons with the oncologist, I accepted it immediately. I knew it was right.
So, you might think – it's a no-brainer [I hate that word but it describes it]. Of course you would choose it.
Not so fast. It's not that simple.
It's been interesting – and instructive – for me to see reactions when I said I was going back on the full dosage. They're the right reactions, but I'm not sure if they're for the right reasons. That was my fault.
It was misleading, now I see, when I said the oncologist felt that there was a good chance the kidneys had stabilised. He didn't mean that the condition of the kidneys had improved, or had reached any sort of plateau. We have had only two proteinuria tests done following the cutting to half of the Avastin dosage. A sample of two is far from adequate to talk about stability under these circumstances. What it means is that it hadn't got any worse so far with the half-dose. It's hardly a ringing endorsement.
His point was this. Given that the count didn't change for the second consecutive test, when weighed against the obvious physical decline in other ways, the immediate risk to the kidneys was less than the immediate risk from tumour growth. In other words, although it is still a dangerously high reading, we are tackling the greater of the two evils. That is, the spread of the tumour is the greater risk, against the very serious risk to the kidney.
We now have to think constantly in terms of the greatest risk and trying to counter that. And that could change overnight.
Increasing the Avastin dose to full strength may be a very short-term strategy, given the recent kidney pains and the knowledge that anything could happen. We hope for the best immediate outcome but we really have no way to know what will happen.
We are acutely aware that swelling in the brain indicates an active tumour. Potentially tumour growth and swelling are both revealing themselves in the marked physical deterioration in the last few weeks while on half doses. Some things cannot be reversed by mind over matter. The half doses so far may well have let the tiger out of its cage and may not be checked by a full dose.
We're also very conscious that the increase in Avastin next time around may again increase the protein output of the kidneys. I think it's almost certain. We know that organs other than the kidneys are also being affected the longer I am on it, and we have some evidence of this. So having the full dose of Avastin is actually a huge risk, but so too is not having it.
It is almost a "damned if we do and damned if we don't" scenario. So we don't feel inclined to celebrate whichever strategy seems the best one to take this particular week.
I don't know if you've ever played Blackjack, or what we called in friendly games 'Pontoon' or 'Twenty-one'. A friend of mine, now undergoing chemotherapy, got it right in this mini-exchange:
Me: It's exchanging one set of life threatening dangers for the other. It was a little in favour of the kidneys when the Avastin was reduced to half. Now it's marginally in favour of putting the risk back to the kidneys and tackling the tumour. Does that make sense? The experiment may show after the event that it would have been better to leave things as they are. But I tend favour action.
FRIEND: Yes that makes sense. Sit on 18 or draw another card, perhaps?
ME: Exactly. Drawing the card and hoping for a 3. Or even a 2. We've done a bit of counting of the cards flipped....
"So," I said to Tracey, "leaving every consideration aside that we've talked about, what do you think you might have done?"
"I think I would have chosen the Avastin increase. It could change tomorrow but today, the tumour is the greater risk. For you, you could have said, 'Let's give it one more try on the half-dose, test that, and make a decision based on three tests at that strength.' But that would mean it would be nearly six weeks away from resuming full-strength Avastin if all was going OK, and I believe we'd have no chance of restraining the tumour with any possibility of the quality of life you've got now, declining as it is."
She didn't say it because she thought it was what I wanted to hear. It's not like that with us. She knew, as I do, that we had no real choice but to flip the card.