The (absolute) State of Things

Hi everyone,

It's been ages since I've written on here, but thank you to all who have posted much more frequently. It is an enormous comfort to know we are not alone.

Well, S (F37) is still going, 18 months post diagnosis. It's been a hell of an 18 months and feels like another lifetime that we were approaching Christmas last year in similar circumstances. To recap quickly she was diagnosed in June 2023, inoperable due to a pre-existing lesion adjacent to the tumour. She had a course of brachytherapy through last summer which led to an improvement by September which was quickly reversed by November when she fell ill again. She spent most of last Christmas with severe headaches and undergoing several courses of proton therapy and radiotherapy as well as some chemo. By April she was having an allergic reaction to everything so they advised to stop all treatment. A visiting investigative oncologist decided to try her on some gene therapy (CrispR) as a last resort, which seemed to slow things down and she was able to lead a full and active life through most of this year.

A few weeks ago she started to feel very poorly again. Scans have shown that the tumour is spreading again but unfortunately she has some other serious complications. She has been having trouble with her bowels and it was confirmed a couple of weeks ago that she also now has colon cancer. The old lesion has also opened up again under the pressure and she is now slowly haemorrhaging into the Cerebrospinal fluid in her spine. This is serious and life-threatening in itself, reducing her chances even more, if that were possible.

She had her latest round of meetings with the various specialists this morning and they have connected a catheter to her femoral artery with a view to trying to patch the haemorrhage through that route, though they have warned that its unlikely they would get away without a craniotomy. They have also booked her in for surgery on the colon for the 23rd December.

She continues to be incredibly tough and until this point has refused to give up. She is starting to lose feeling in her hands and is feeling generally unwell but is still on her feet and its all but impossible to get her to lie down most days, until she pushes it so far she knocks herself out for a full 24 hours.

The more noticeable effects have been on her personality. She has wild mood swings and moves from euphoria to despair like a pendulum. In between, we get bouts of uncontained rage, I have very few plates or wine glasses left in the house as they have mostly been thrown at me by now. She continues to be  paranoid that I am carrying on affair with my ex-wife even though I haven't seen her all year and we have barely spoken. She has also recently started to slur her words and gets lost in conversations frequently.

After her meetings this morning she has decided that she wants to cease all further treatment for the haemorrhage and colon cancer, she hasn't been having any treatment for the cancer since this Spring. I'm not sure how much to push her to continue to be prodded and poked beyond this stage to be honest. She has been in denial for so long that as heart-breaking as it is to come to terms with losing the battle I would like to see her take things a bit easier and slow down. The biggest worry now is that the brain haemorrhage is more of a ticking time-bomb than a slow decline so we will have to just take each day as it comes.

I know many of you will also be approaching the coming festivities with dread rather than joy, so want to send my best wishes to all of going through this. Hang in there!

Simon