…but what does it say, and why are there so many walls with different words, down so many different dark and light pathways? At least that’s the situation I feel like I’m in as I write this, which is Christmas eve, although it’ll get posted later. I’ve been out of hospital after my second seizure for three days now, we’ve had the first update on the MRI scan and are waiting for the meeting with the multidisciplinary team to get confirmation of the results and an update on the plan for next steps. It’s unfortunate timing this all happening over the Christmas period because we’ve got some clarity, but at the moment lots of uncertainty. If our medical team are going to get any time with their family over Christmas this is inevitable and not a criticism, just a reflection. 

To cut to the chase, the MRI scan taken after my seizure shows that the tumour is returning. It’s putting pressure on my brain and is what is causing my current problems. This is far from the result we were hoping for; what we wanted to hear was that the swelling in the brain was because the immunotherapy was working. 

So the mental, uncertain maze I’m trapped in at the moment is one of decisions about what the next steps in treatment are going to be. The writing on the wall, which makes up this blog’s title, is that it’s going to be surgery and secondary chemo. The current uncertainties, the other routes in the maze I feel trapped in are, for me at the moment:

  • What does this mean for the immunotherapy in Cologne; is this paused or does it stop? 
  • How effective is the surgical and chemotherapy route – is it worth it? It wasn’t exactly fun the first time…

The image in my head is very confused. It’s dark, most of the passages are indistinct, I can see writing on every wall, but it’s not possible to read. At the same time it doesn’t feel like the end. There are also light passages leading outside, or at least to brighter vistas. 

All this is leading to a mix of emotions. I can feel lots of other words bubbling up and a desire to write more. I’m not going to yet, I’ll do this mental check-in after the appointment with my oncology team – I want to try to be authentic without becoming all maudlin or negative; my feelings are very mixed. But for now, it’s Christmas, I’m surrounded by my family, lots of love and support and know that there’s a community of people around me wishing me the best. Confused images aside, I’m in a good place and there’s not more I can ask for.

Picture description: Bright coloured graffiti tag on a grey wall. Main tag primarily in light and dark blue. Indistinct words in black and red behind main tag Picture credit: DJIMison on flickr