Clarifications

The oncologist appointment is done, and I think that’s it for our dealings with St. James’, unless something happens and the crisis leads us to the emergency room. That’s not the plan though, the plan is to be prepared and equipped, and to stay at home or at a push move mum out to St Gemma’s Hospice.

It was a strange conversation, another of those where you aren’t quite sure whether the doc is trying to assess mum’s cognitive capacity, or is actually seeking information. Mum would give her usual glib and inaccurate answers to questions, glossing over or even just forgetting problems she’s been having. We would sit to the side shaking our heads and quietly making corrections. Dr Turner explained to mum in detail, patiently waiting for her patterned replies to end. Eventually we got to the “what happens next” part, and I couldn’t take any more of watching her getting more and more tense and annoyed with his continuing refusal to give her the reassurances she was asking for. I asked if we could let mum sit out the rest of the meeting. He put that to mum who of course was very happy to have Liz and me deal with it, and go out with the nurse for a cup of coffee.

So the net of it all is this: The primary turns out to be melanoma. The site is not known and given a general lack of physical discomfort, irrelevant. The tumours in her brain will therefore not respond to radiotherapy. Wikipedia’s 2.3 month median survival rate is pretty much “on the money”. Mum has a few weeks left most likely.

I asked him about my trip home, and whether I was making a mistake. He explained that several pre-terminal things might happen at any time, but setting those aside, the time to be away is now. If I don’t do it now, I might not get home for weeks.

So I will go home.

The best news is that the likely progress of this disease will be sleep and more sleep. As she loses function, she will sleep more, and the end will probably be just a failure to wake up. Seizure is possible but much worse to watch than to experience. Eventually, she may lose the ability to swallow. In that case, there is no alternative to oral administration of dexamethasone, so the medication will cease and her deterioration will progress much more rapidly from that point onward.

So we’re back home, the hospital bed has been delivered and set up in the toy room on the ground floor. We’re boosting the steroid dose back up to 16mg a day for the next few days, then dropping it back down again.

Mum went out for lunch with her friends, and Liz and I went over to her flat and started sorting through her desk and filing cabinets. There was lots of eye-rolling and exasperated expletives as we found all the dozens of “important information about your account/policy/credit card” leaflets carefully filed away. Years and years of Tesco’s online shopping receipts. Cynically up-sold insurance policies (500k GBP buildings insurance for a 190k GBP flat? Fuck you Saga). Minutes from Friends of the Playhouse meetings going back seemingly indefinitely.

I think I’m going to scan and archive a lot of those mundane items. Not really sure why, but I can imagine meditating on them years from now in the middle of the night.