Over the past month or so things had started to look more positive. I’d started to have more energy. So, I started back to work, making my way up from an hour or so a day to four to five a day. I was feeling positive about how the treatment for the cancer was going and really enjoying getting stuck back into my job. Two weeks ago, however, I took a number of steps backwards, or at least into uncharted territory. It was a scary experience, which I’ll describe below, but right now I’m in a relatively positive frame of mind, albeit with a significant level of uncertainty clouding it. This post is going to explore this uncertainty, which takes two forms: uncertainty about whether I can trust my body not to let me down; and uncertainty about the progression of the tumour. 

Just over two weeks ago, I was on a zoom call with a colleague, catching up on a project I’d been working on before going on sick leave over a year ago. I started to feel odd, numb and cold on the left hand side of my face, my left arm and left lower leg and foot. Then I started to slur my words. My colleague noticed and asked how I was. It’s a bit of a blur from this point, but I got myself to our neighbours while Sarah, my colleague, called Pam who was on the train up to Scotland to see her mum – I was home alone. 

My neighbours were as brilliant as Sarah. They called 999. The ambulance came quickly and I managed to get myself into it, shaking violently and slurring my words. I remember the blue light and siren going on, but that’s it. Two or three hours later I woke up in the Emergency Resuscitation Unit with a needle in my arm, and electrical monitoring patches stuck all over my chest. I’d had an epileptic fit and, though very confused and tired, was basically fine. My stay in hospital was three nights and involved lots of monitoring, another MRI and an increase in number of different pills I’ve got to take. 

We had another trip to Cologne for more immunotherapy coming up and I was declared fit enough to do this, which was a real relief. 

Can I trust my body?

This is the first epileptic fit I’ve ever had, although I have had a couple of episodes of random numbness over the past few months. The experience of standing at my neighbour’s front door without complete control of my body has knocked my confidence; will it happen again? Hopefully the anti-seizure medication will mean it won’t, but I’ve found myself regularly watching from inside and second guessing whether I’m tired, hungry or the odd feeling is another seizure about to start. 

Three days in a hospital bed, plus the feeling of full tiredness has also knocked my fitness. I’m going to have to rebuild to get back to where I was and this feels like a real blow. 

What caused the seizure

As I understand it, there are two possible causes of the seizure. 

The first is that the tumour has started to grow back and is pressing on my brain. This was the source of the auditory and visual hallucinations I experienced before I was first diagnosed with the tumour. We’re obviously hoping that this isn’t the case the seizure was, instead caused by….

… the immunotherapy doing what it’s supposed to be doing, attacking the remaining tumour cells. This will mean that there’s localised swelling or edema at the site of the tumour. This is pressing on the healthy brain and causing the seizure. Despite the scary side-effects, this is definitely the result we want. 

We put the horrible rash which I experienced nearly three months ago down to an allergic reaction to one or more of the pills I’m on. However, the Cologne team thinks that it might be a sign that my immune system is working, that it’s one of the side-effects of the immunotherapy. Again, if this is the case then it’s definitely a positive sign. 

The question is how to distinguish between these two potential causes of my fit. The team in the UK have looked at the MRI scans as have the team in Cologne. At the moment the jury is out, but this is one of the challenges we’re facing by seeking novel treatment not available in the UK. 

We have two, very competent medical teams, with different specialities. It may be hard for us to judge their conclusions and it’s possible we’re going to be faced with two different recommendations for the next phase of treatment. These will be to go back to second line chemotherapy (possibly with surgery if the tumour is big enough), or to continue with the immunotherapy. Hopefully the MRI in a month will give a clearer indication of what the cause of the swelling is and this decision will be easy, but for now the best we can do is cross our fingers and hope that this unfortunate episode is the consequence of the immunotherapy working. Hopefully, the cancer cells have got nowhere to hide from my immune system and the swelling is their last gasp before they’re gone.

2 December 2023

Picture description: an old school children’s playground roundabout at the edge of a green field. It’s rusted metal with grass growing through the bottom.

Picture credit: Duncan