ICON9 Trial - check up the eighth

Didn't publish the previous month's draft till just now because it felt too much like unfinished business.  I talked to one of the Macmillan people after my appointment with Dr M last month, about that niggly  mind worm I was getting at pill time and we agreed that I was someone who tried to get on with things and tried not to get too anxious and tried not to think too much about the difficult side of all this and tried to do reasonably normal things and she said that this was hard work and took energy and I had a little weep and realised that the problem (or at least part of it) was that I'd got to a point where I no longer had a good view of 'the path ahead'. 

The last thing had been getting on this trial and reaching a modus vivendi on the trial and learning to live with another astonishing bit of modern medicine, but I didn't know what came next and I hadn't asked the questions or if I had I'd forgotten the answers - all through the Covid times there's been no Christopher with me at appointments to hear the bits I don't take in. Into a lacuna like that slinks an undercover raiding party of the unwanted stuff. The magic time when you thought it might have been banished for good is long gone because you've relapsed once and it can happen again; you might only get three goes or even only two goes at chemo and you've already had two; you've already had three years and three months of the five years average life expectancy from diagnosis; just how much time does olaparib buy you? What's the point of planning for this, that or the other? And so on and so on. 

I clearly needed to fill the gap with something a bit more evidence-based and that could be supplied by Dr M  the next time I saw her.Which was earlier today. And was all much more reassuring than the covert raiders had been whispering. 

Yes - I could relapse again but some people from the first olaparib trial (where they were testing how well it worked alone) are still taking it, without having relapsed. If it comes back, I can have more chemo starting with a platinum-based one again as it has been platinum sensitive before (better the devil you know). There's no limit on the number of chemo bouts you can have as long as they work and you are well enough. I had a longer than average remission period until relapse which is good. The average life expectancies given to me at diagnosis (5-6 years) include people who sadly didn't even get surgery. Dr M went back to the idea of it being a chronic disease which would sometimes (always) need treatment.

Well, that victory over the raiders felt worth a celebration. So I had Itsu sushi and miso soup for lunch while reading the Cazalets Vol. II, then the nice Macmillan lady made me a cup of decaff and pressed Bourbon biscuits upon me.

After that it all went a bit pear-shaped. I meant to walk a good chunk of the way home, not having cycled due to midday heat, but it was one of those days when something went wrong or bloods didn't get analysed in time or someone didn't sign something so it took ages for the next lot of olaparib to be ready, by which time it was too late to get all the way home in time to get the shopping from Tesco Click and Collect, and anyway it had been a long day. So I asked Christopher to meet me by the Zoo in the car, so I could shun the rush hour tube. And then I  had to shelter under a Euston Road doorway and then a giant plane tree in the park while the heavens opened twice - no hat, no brolly,  no coat and I realised, too late, not even my best Tilley sun/rain hat as I'd left it in the Macmillan Centre loo. 

Nothing like sheltering from rain on the Euston Road to remind a person that they hadn't paid the congestion charge from the day before. (The day when after a warm evening drive across central London to deliver stuff to dear daughter, we got home to find the freezer had been beaten by heat and humidity again and had to be taken apart and given the hairdryer treatment to melt the ice that had formed all over the heat exchanger - took until 1am...) And then, when my patch of dry ground under the plane tree was taken over by water and I started walking again, those little bits of plant life that end up everywhere after a deluge kept getting in my sandals.

And then, driving to Tesco, the car was so low on fuel that that was all it would say on its little screen - thank goodness it doesn't talk - it wouldn't even tell me how fast I was going. The petrol pump was good though - until I shifted my view slightly, I thought it was going to cost 66.66 - either 6p or 60.00 more than the number of the beast. Which reminded me of the best T-shirt slogan - "667 - Neighbour of the Beast" - hee hee hee hee hee.