We're going to do this differently, normally one of us write something and we add or remove stuff....this has been really weird because I remember everything before, but afterwards is bits and pieces, I've not seen half of these pictures too.....so I have written a bit and Sam has written a small dissertation after, in my defence Sam did English at Uni and I drew pictures and build models:
My turn!!
So, I wasn’t going to highlight it, but it turns out all my family knew and we were all quietly pretending we didn’t!
Aaaaanyway… Tuesday marked the birthday of my surgery. Mazel tov!!
This is more of a “what to expect” post than anything else, because we get quite a few messages from people asking about this bit. And honestly, it’s much easier than it sounds. Not easy, obviously, but not quite the horror film your brain makes it out to be.
My surgery was on 7th July 2025. It was really early in the morning, so I was given a room at Addenbrooke’s the night before, which helped massively.
I was woken up to a really crap breakfast. Basically, it was a bottle of dye that highlights the brain tumour and makes it easier for the surgeons to see what they’re doing. Very clever stuff, but it cost nearly £1,500 a bottle and tasted absolutely awful.
0 out of 10. Would not recommend.
Then I met my new favourite person: the anaesthetist. Or, as I called him, Dr Doom — along with a few other names.
To be fair, he was brilliant, but his job is basically to calmly tell you every horrible thing that could happen in surgery and how they’ll manage it. In the weeks after, I heard him give the same speech to other people, and I had to laugh because it really is his little routine.
Sad little man…
The operation I had is called an awake craniotomy.
It sounds terrifying, but it’s not like being awake in the way you imagine. You’re heavily looked after, numbed up, monitored constantly, and there’s a whole team around you. The reason they keep you awake for part of it is so they can test important things like speech and movement while they’re working near those areas of the brain.
In theory, it means they can be more aggressive with the tumour while still keeping you safe.
The way it worked for me was this: they put me to sleep, cut out a section of skull, then woke me up.
Lovely.
When I came round, my head was clamped in place. In front of me was a neurological doctor holding my hands and talking me through it. Dr Doom was lurking somewhere in the shadows beyond her, and the surgeon was behind me.
The neurological doctor had met me the week before. She’d spent time getting to know me — my family, my hobbies, and even my playlist — so when I woke up, she could talk to me like a normal person, not just a patient.
We spoke about Max and Freya, Sam, Roly, and the fact that Rupert the cat hates me.
In my case, the tumour was in a really awkward place, right between speech and motor areas. During the mapping, they found that my speech stopped at the lowest stimulation, which basically meant removing the tumour safely wasn’t possible. So they took biopsies instead.
Waking up after was probably the hardest part. I had aphasia and apraxia, which meant I couldn’t really speak properly, and my brain and body weren’t quite working together how they should. That bit was scary and frustrating, especially when you know what you want to say but can’t get it out.
But the brain is ridiculous.
Slowly, things started coming back.
So if you, or someone you love, is facing awake brain surgery, I know the name sounds horrendous, but the actual process is much more controlled than it sounds. The team know exactly what they’re doing, and you are not just left there having a casual chat while someone digs around in your head.
It’s weird. It’s intense. It’s emotional. But it is also very clever, very planned, and much more manageable than your imagination makes it.
One year on from surgery, I’m still here. Still annoying people, still making things, still trying to get fit, still trying to get off these steroids, and still very much fighting.
Happy surgery birthday to me, I guess.
Not exactly cake and candles… but I’ll take it.
Yawn, Sam's turn (joking):
No one can imagine the fear of watching a loved one wake up from brain surgery with no ability to communicate. The fear in their eyes looking at you and having to remain calm and comforting to make sure they don’t read the internal panic of – “why can’t he talk, is this permanent, I can see the incision and blood fresh from the operation, how are we going to cope with this”
The hours after, sat beside the bed with Kris intermittently waking up with the same panic and terror each time he realises what he has been through and remembers that he cannot speak and all you can do is stroke his hand until he drifts off again. We sat waiting for the surgeon, consultant, specialist nurse – just anyone – to tell us what the hell has happened because this isn’t the picture they painted of Kris waking up, potentially struggling to find a word or two but the speech impairment would “barely be noticeable to anyone”.
We didn’t speak to anyone until the day after. In some form of cruel irony, the surgeon came to see Kris when no family member was there and he couldn’t communicate back what was spoken about. Kris not only couldn’t speak, but struggled to understand a lot of what we said. He filled social cues because that is who Kris is – a people pleaser – but we knew he only understood maybe 20% of what we said. His motor skills were severely impacted. He couldn’t move his right side at all and to this day there are still issues with that. He also couldn’t process instructions – if you said touch your head then your nose, he would touch his head and then stare at you confused and then the look of utter despair across his face when he realised he had lost so much of himself and his ability to do anything.
The first two days were Kris in and out of deep sleeps. He couldn’t eat or drink because he felt so rotten and because the surgery had weakened the right side muscles in his oesophagus . Which meant he developed a chest infection very quickly after aspirating water.
Kris had to learn to talk, learn to swallow foods and water, had to learn to use his right arm again, had to be watched by occupational health while showering to prove he could look after himself. He lost everything that made him Kris – those that know him know how chatty he is. Slowly he recovered his right arm and could write very small amounts but it was tiring and hard.
We have been told to praise the NHS for all that they do, but every step of Kris’s journey I had to advocate for him, ask the nurses to put a note up to say he had no speech as every nurse came in and asked him his date of birth and if he was allergic to anything. He would nod to fill the social cue, but I would have to say, he isn’t allergic, he has no speech, he can’t answer you. I had to hold his drip bags when they were changing them, I had to help him to the toilet, I had to bathe him because he hadn’t been taken care of – they just put a pile of towels at the end of his bed and not one person thought, he can’t walk well and he can’t use his right arm so how is he going to shower. At the same time, cognitively, he was very impaired so it didn’t occur to him to ask for help, so the towels sat there until I asked him if he had been washed, he said no, so I had to hunt for bowls of warm water and physically move him around to help him feel a little more human. We are lucky to have a system we do not have to directly pay for, but equally, we should be able to express disappointment and upset when we feel like basic care is being missed.
There is a huge gap between caring for a patient by doing hourly obs and administering medication and then actually proactively thinking about what that patient needs, e.g. he can’t use his dominant right hand, so placing a tray of food at the end of the bed when he is semi conscious and cannot pull himself up might not be the best level of care. Allowing the tray to be taken again with not a drop eaten 3 days in a row. I then had to approach the nurses and ask if it was normal for him to not eat and is it ok for him to not have eaten anything for 3 days. “It can happen but equally I didn’t realise he hasn’t eaten for 3, so we need to consider putting a feeding tube in, that will significantly delay his discharge”. At that point, Kris had a tray of food in front of him, soft foods that he could swallow easily. I woke him up, looked him square in the eye and said they are going to put a tube in to feed you if you don’t start eating. I told him he would not come home for weeks if that was the case. He looked back at me, nodded and pointed to his food. I fed him a quarter of the plate of food. It was so straight forward – he just needed to be spoken with and helped. But for 3 days he had been left to sit with no help and no advice. That level of dynamic thinking, in a neurosurgery ward where they are aware of post op complications, was severely lacking. But if you looked at NHS process, this nurse had done her obs, the other nurse had administered medication, the head nurse had signed off all these actions – everyone completes their processes but the cracks that form in between are now being filled by family members who have the confidence to stand up and say “I do not think this is right” with the very real fear that you will be branded abusive or the care for your partner will be different as a result of highlighting something that is wrong.
Aside from the advice of what to expect if you or someone you love has the misfortune of having to have this surgery, we want to help everyone understand that it is ok to say if you feel something has been missed, it is ok to speak up if you do not feel the level of care matches what you expected. We should be able to leave our loved ones knowing they are being entirely cared for, not wondering what has been missed by me not sitting there and advocating.
Kris was told he would be in a few days maximum. He came home 9 days later with no speech, still struggling to process longer instructions and struggling to eat and drink without aspirating. The next day we went back to hospital to be told he was terminal and we had maybe 14 months to ‘make memories’. Since being diagnosed terminal, the NHS doesn’t see the need to build quality of life for him. We get told to weigh up if it is even worth treating ailments that normally would not be hesitated to treat. There is a huge gap between treating a terminally ill patient to extend life and then allowing that patient to be treated with the feeling their life and physical quality of life still matters even though the time is limited. Our treatment in Germany has shown us the lack of concern and belief the NHS has when you are given a short expiry date. This is something I will personally push to change no matter how long it takes.
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