How Was It For You?

Have you had surgery before the anesthetist asked? My adenoids out when I was little. OK. Not doing things by halves then? And so it began.

In the anesthetics room we chatted about what we would be eating on Christmas Day. There was a team of three anesthetists with one in charge and they were absolutely great. The process is quite variable due to the stimulation and testing. Up to 6 hours was the ball park. My family started to really worry after 8. I don't know exactly how long it lasted but it was between 10 and 11 hours.

Prior to surgery I met with a Neuropsychologist to discuss the process and also completed neurocognitive tests. I was able to ask questions and felt pretty clear about what I would have to do and this helped. Surgery is however unpredictable. I was forewarned that the stimulation of the brain induces seizures in 20-30% of patients but optimistically thought I'd be in the unaffected 70-80%. This proved not to be the case and I had seizures immediately. I was able to tell the team I was having seizures but unable to stop them happening. Ice cold water is poured over the brain to control the activity and it works.  

I have to say that hearing the words "Sorry, but we have been unable to identify a safe route and therefore need to drill into another part of your head" is not top of the list of things you want to hear but I felt no pain. The drill is LOUD.

I’d been nil by mouth, and got incredibly thirsty during the testing phases and each time I asked was given a bundle of wet green swabs to suck on. It was amazingly refreshing!

Once you really understand the rationale for being awake the alternative is probably more frightening. Functional MRIs had indicated there was a margin of safety around the tumour but in reality it was more diffuse and surgery was eventually abandoned as it was clear from the prolonged stimulation and testing removing any more cells than needed for a biopsy would leave me permanently paralysed on my left side. The team did their absolute best.

After surgery I was unable to move my left leg, foot, lift my left arm or hold anything. It took three physiotherapists to support me stand, and yet six weeks after surgery (and three weeks after being discharged) I'm walking!! Yes, I'm slow and need a crutch but to say I'm grateful is an understatement.  If I have to wear my foot-up for the rest of my life, then so be it.

As you probably gathered the treatment journey continues. Not always straightforward, but then perhaps you wouldn’t expect it to be. This weekend I’ll try swimming and see how that goes. In the meantime, at least I’m making a dint in my ever-growing stack of unread books in all the waiting rooms I now frequent.

Thanks ever so much for reading.


The novelty of my practical and comfy Gazelles ordered from my hospital bed is now wearing off a little and I'm starting to lust over other lace up shoes compatible with my foot up like the brogues below (Office). I'm also enjoying stripes as always and jumpers with interesting sleeves (Warehouse & ASOS) - links below.