It’s been a while…..
So I haven’t blogged for a while. First there was a lot to say, but it was hard to say it. Then there was little to say. So here I am.
The “lot”, first. The results from the op. On the good side: Genghis was smaller than the original estimate. It weighed in at 35 mm compared with the rough 4 cm estimate when I was first diagnosed. So not only was it a bit smaller, but it also hadn’t grown rapidly in the four weeks from diagnosis to excavation. Also good: the doc got clear margins around Genghis so no need for a further op to remove any more of my boob tissue. And Genghis was entirely triple negative, so no need for Tamoxifen (which brings on an early menopause) or Herceptin.
On the bad side: the lymph node had Genghis bits in it. Not just a few random cells but a 2 mm lump. 2 mm is apparently on the dividing line between micro and macro. And then the doc used the scariest word in the English language. It turns out that the scariest word isn’t “cancer” or “malignant”. The scariest word is “metastasis”. The 2 mm Genghis bit was a metastasis.
That was very hard to hear and talk about. You’ll hear some people say that it doesn’t count as a metastasis as it’s only local and not distant. But trust me – if a doctor uses that word, in whatever context – it sounds bad. Really bad. It took me several days to get over that body blow. It was definitely a low point.
The doc wants to take out all my lymph nodes as a result but wants chemo to happen first. So we had a very speedy referral to an onc. We met the very nice Rob Stein the next day. We had a long chat and started planning. Only at that point did it become clear that he will only treat in Harley Street. Big “computer says no” moment. So he got on the phone to the other onc who works with my breast surgeon and the next day we trot off to see Onc 2. He will treat me locally so it’s much more practical.
They say everything happens for a reason and this was no different. Stein wanted me on a chemo regime called Accelerated AC Taxol. It’s a fast and furious course, harsh but done in 16 weeks. Onc 2 turned out to be the fabulous David Miles. Miles offered me a choice between his usual regime, a more bearable but longer course (24 weeks) and the regime Stein had offered. I went for the latter. If I hadn’t seen Stein first I would have had the 24 week course. So despite the schlepping between the 2 of them, it worked out well.
But the other good bit was Miles himself. He has the most wonderful personality and an obviously excellent brain. We hit it off. And for those who believe in Fate, how about this – his wife is the geneticist who we saw in connection with Joey’s deafness. Joey is now doing brilliantly. I hope the gods (and Miles) will do the same for me.
We set a date to start and talked about all the practicalities. And then I was free to go. Free to go on holiday. Free to have some family time.
And that’s the “little”. Little to say because the past week has been gloriously free of doctors. We are soaking up the sun and relaxing in the Algarve. I never thought we’d be able to come but here we are.
I wish I could say I’m able to forget about Genghis while I’m here. But I suspect that will never be the case. But at least I can relax and spend time away from the doctors. And that in itself is something.