I forgot to buy a toothbrush, and my electric one ran out of juice half-way through. It is testament to my pathological behaviour patterns that I have never in my life before heard an electric toothbrush run out of power.
Today was the toughest day so far. Not because of any particular piece of news - we had the results from the body scan back, and a recommendation from oncology, but nothing definitive. It’s really about the gradual transition to reality that’s going on. We’ve been in a state of crisis, and now we’re moving toward banality. On the way, there are incremental information updates, and a process of acceptance of the truth by mum, and many many bureaucratic obstacles and aids. There are expanding puddles of cat piss and shrivelling property values. There are bank accounts and some unknown number of forgotten investments. Mouldy fridges and buckled doors. Cryptic garbage schedules and pension credit savings credits.
The scan highlighted only one interesting item, an enlarged lymph node in her groin. This is apparently not a prime suspect for metastasis to the brain. Prime suspects include breast cancer and melanoma. It’s possible that the lymph node is doing something fairly normal and is not cancerous, but oncology recommends a biopsy, which has been booked for Monday. I’ll come back to that.
When the doc mentioned melanoma, I remembered that many years ago mum had a melanoma removed from her leg. The doc was all over this, and noted that it may well be significant. She said she would pass on the information to oncology, and see if they still wanted a lymph node biopsy.
But this is all incremental to this narrative, this surreal tale that’s spewing out across our lives. The thing here is that it was the first time I’ve been with mum while she’s had the situation spelled out to her. We’ve been generally pussyfooting around the details when we talk to her, using “diplomatic” language which will make sense to her only if she’s already on the same wavelength, somehow trying to play to her state of mind but really playing to our own need to avoid the hard conversations. Today, we sat and listened and talked, and clarified so mum fully grasped the meaning of the words being used. While she struggled to find a natural reaction, my mind seemed to speed up and slide around the place, as if I was trying to correct for a slippery road, always overcompensating slightly.
There’s something about this, beyond just an urge to avoid difficult things. Like a child losing some piece of innocence, or just a parent finding out that it was lost long ago and having to accept that the delusion was on his part, not his daughter’s - his own need to infantilize his child, blown apart by the realization that the child moved on to the next level, without clearing it with ground control.
I’m wandering, I know. But this has been a tough day.
One of the most important things which was communicated today, and which we discussed later, giving me some confidence that mum has retained this information at least for now, is the notion that our focus now is palliative care, not a cure. There is no coming back from this, but there are people who will help us plan for the best possible death. I’m confident that mum knows this today, even if she won’t know it tomorrow. By the time I left, she wasn’t freaking out about it. That’s blowing my mind. Maybe because I’m not ready to have her be better at this than I am.
Another important revelation is that there is no medical reason for her to continue to be in hospital. Since her nights there are so desolate and horrible, and the prospect of another night alone has been plaguing her and causing her to fall apart as the end of visiting time approaches each evening, I think the very least we can do is get her out of there. So tomorrow, all being well, she is coming home to Liz’s house. Clearly this can’t be an open ended situation, so we will engage the palliative care team at the hospital tomorrow and get the ball rolling for a move to a care facility of some kind, tbd.
I’m finally beginning to grasp the scale of the work ahead of us, and it’s quite frightening. We are going to need to find something on the order of 25k GBP per year to pay for care (I have no idea for how long). We’re going to have to take apart her cat sanctuary of a flat and rebuild it, to either rent it out or sell it. We’re going to have to dispose of furniture and carpets, and go through her stuff to find all her assets and income. And I’m running out of rope at work. Next week I have to start working again, I really do. I will need to write a project plan, down to the hours and the minutes, I think.
Last of all, we need to decide whether to go through with the biopsy. We have to decide if we care about the results, and this is a new way of thinking which is difficult to accept. If there is a primary cancer in her lymph node, is that knowledge worth the discomfort and the atmosphere of medical progress the procedure will generate? If it turns out to be treatable, do we even want to be confronted with the decision about whether to treat it? Chemo and radiation are a horrible prospect, and will not bring about a cure of any kind. Why even go there?
One possible answer is that there are many kinds of brain cancer, and we don’t currently have any information about the kind living in mum’s head. Knowing more about its origin may help us understand its likely progress. This is valuable knowledge, to be sure. We have a few days to check our thinking, to make sure this is a rational decision.
It’s a strange way to have to start thinking. How do we judge that we’re being too rash, trading off too much life expectancy in the hope of short term comfort? What kind of fucked up calculus can we use on this?
Forgive my incoherence. I guess I’m just incoherent at the moment. I was born on a Wednesday, as it happens.