What It's Like Having Brain Surgery While You're Still Awake

Imagine waking up from a heavy sleep with the top half of your skull missing. You're in an operating theatre, surrounded by nurses and doctors busily organising sharp instruments on trays. These people are asking you questions about your life as if everything is totally normal. You feel very little pain and can both speak and think. Soon, part of your brain will be removed and, temporarily, the words you can still hear will make absolutely no sense.

This procedure is called an awake craniotomy. Typically taking around ten hours, it's a common practice in the removal of brain tumours. Incredibly advanced, the risk factors in standard awake craniotomies are relatively low, despite the terrifying realities of the operation. The responsibility entrusted to the neurosurgeon, however, is enormous. The brain contains over 10 billion nerve endings; a surgeon's blade misplaced by a millimetre can render a patient entirely paralysed.

I spoke to five young survivors who have allowed a surgeon to drill open their skull and cut into their brain while they were awake, to enable them to survive.

My initial memory of discovering l had brain cancer was almost like it wasn't real. I was initially informed I might have six months left to live because of the location of my tumour, which was the size of a grapefruit and located in the left insular lobe. I was immediately sent to see a top neurologist, Dr Fredrick Lang, and was still in the phase of "non-reality" – I saw the fear on my husband and family's faces, but it wasn't registering with me. When Dr Lang said the words 'awake craniotomy', I went into extreme stress mode. Never google it if you're going to have the surgery.

I was 27 at the time of my surgery and subsequent radiation. The day of the awake craniotomy surgery seemed to go by incredibly fast. IV lines, nurses, doctors and even surgeons flew down from New York specifically for my surgery

I was slowly woken up to my anaesthesiologist saying my name. I had no pain other than from the position I was in on the metal table. I burst into tears, not from the craniotomy, just from the position I was in. There was absolutely no movement allowed during the procedure, so the pain from that was excruciating. The anaesthetist slowly brought me to, making sure I knew what was going on and for me to tell him anything I was feeling or thinking. I had a nurse trying to help with the pain in my body. I'd been under anaesthesia for four hours before they woke me up for the testing. I was shown cards that either had a picture on them or a name of something I had to read aloud. I was emotionally exhausted and in tears, but knew I needed to stay connected to get through it all. I was awake almost two hours before they put me back under. The procedure itself took ten hours to complete. They weren't able to remove the entire tumour due to my speech and physical abilities, and I have to go back to the neurologist every three months for an MRI to check on regrowth on the leftover tumour. I'm currently on two different seizure medications. I have my speech back, which is great, but having to take steroids for brain swelling.

I want people to understand how amazing they are for undergoing this procedure. You are an amazing warrior and will come out strong at the other end. You will change the way people see you – and know that you will be an awesome example of human strength!

l was 24 when I was diagnosed with a low-grade slow-growing brain tumour, and 25 when I had surgery.

I remember getting told off for giggling [during the surgery], and I was asked to sing rhymes and tell fairy tales. When the speech therapist left, I asked her to call my husband to let him know I was OK, and recited his number for her to write down. I felt sleepy and like I couldn't concentrate on much. I didn't feel distressed at all, and I wasn't in any large amount of pain. The sensation is like you're in a deep sleep and you've been woken up by someone asking you what a caterpillar and butterfly have in common and what's the process called and more questions like that. I wasn't aware that my head was open. Every now and then I'd remember, but I know I thought it was so funny at the time.

Post-operatively I've had issues with jaw pain where they cut the muscle to access my skull and brain. I've mainly had issues with how the diagnosis affected my life. I can't get life insurance, I couldn't get travel insurance, I can't drive for a year and I couldn't give blood until my histology results came back

I was supposed to be off work for 12 weeks, but I was back after six. The most noticeable change was how happy I was. I felt so free! I'm a lot more grateful for my life than I was before, and I'm determined to make it a good one. I'm more aware of people around me. I know now that when someone says they will be there, it's not fair to hold them to that, and it's not always personal when people let you down. Life is hard when you have cancer, but it's equally as hard when a loved one is ill and you cannot do anything to fix it.

I remember the surgeon looking very business-like. "I'm sorry to say this, but you have something called a glioblastoma-multiforme, and it is a high grade malignant form of cancer."

I already knew this type to be the most aggressive and deadly form of brain cancer, with survival statistics being very low.

My first and most impressionable memory of my awake craniotomy was of me awaking and suddenly crying my eyes out. I was affixed to this operating table and the neurologist was right in front of me. I remember being in pain and feeling very uncomfortable. The most frustrating thing about the ordeal is that you are basically screwed to the table by a clamp; the experience was horrendous! By the time I'd calmed down, the operation all went very smoothly and successfully. I passed every single physical and mental test and I was getting high praise from the surgeon for managing so well. Time doesn't really matter when your mind is numb but your body is able. I felt probably the most confused, yet more aware than I've ever been in my life.

I've experienced two types of seizures as a result of my tumour. One is known as focal seizure, where it's just partial body movements and I start to shake uncontrollably down my left side and my jaw goes mental. It's like a hiccup, but continual… on my left side. To control it I have to breathe and calm down, or it transforms into a mal seizure, which is where my left arm tries to go over to my right side, my eyes start to roll into the back of my head and my head is dragged to the right with no ability, on my part, to control any of it, not even my breathing. A seizure feels like being in a place of no time or space, but knowing you are trapped there for eternity. Then everything goes dark and you are released from this formless time and space and you lose consciousness.

This experience of illness has taught me to love wholeheartedly. To forgive in the moment. To allow things to be. Never give up. The mind isn't everything. The heart acts like the mind and can guide you to your own truth. Sometimes your greatest fear can show you your biggest truth and change your perception of reality. This "body" isn't me and that tumour was never even a part of me to begin with. It has always been my experiences that have guided me to this place, but right now my experience is guiding me towards peace. So I can feel emotions but not react to them. The ego is still trying to resist and I am still learning this, but I'm always sobered by the reality that I could die at any moment, and that if it is meant to be my "time", then it is my time.

Contribute to Pablo's GoFundMe here.

About 20 years ago, when I was 16, I found out I had cavernous angioma [a tangle of vessels that resemble a blackberry, a benign tumour]. I fell in a soccer game and the following day I went to the emergency room and I found out I had a concussion, along with multiple cavernous angiomas – three, to be exact. Being so young, I was scared and confused.

Since then l've had three brain surgeries and the awake craniotomy. l may have more in the future. The unknown is terrifying. The one specific cavernous angioma which required the awake craniotomy had bled multiple times previously. It was situated in a risky area in my brain, the Broca's area [the area of the brain that controls speech]. Years ago this would have been considered inoperable. Multiple cavernous angiomas can grow at any time and bleed. Doctors don't know why or how, but the only way to remove them is through actual surgery. So really, it's a waiting game and you don't know what the outcome will be. This is the most frustrating part about it.

On the day of my awake craniotomy I walked in the operating room, climbed on the table, and the next thing I remember my name was being called. I opened my eyes and I just thought, 'Is this really happening?' Your head is in a clamp. The brain feels zero pain, so you can't feel them operating on you. The neuropsychologist was asking me questions, similar to ones you would answer in the MRI test. I spoke about a recent holiday I went on and I answered questions that they asked. I'm sure there are things I don't remember saying. At one point I thought I was falling asleep and I felt like I was answering the questions but I couldn't hear myself saying anything. I learned from my neurosurgeon that this was because there was an area of my brain they had to go around so I didn't lose my speech – this was the whole point of me being awake. If I wasn't speaking to them, there is a very good chance I wouldn't be speaking today.

A week after the surgery I would mess up words; l would say a word, but meant something completely different. That happens, and it did go back to normal quickly. Dr Steig, who's been my neurosurgeon since 2011, completed my awake craniotomy. I trust him with my life; I feel certain that my quality of life is better because I have such a remarkable surgeon.

Today l recognise that life is not always fair. Life is too short to be angry or get discouraged. I love myself. No matter how hard some days are you must live life to the fullest and never give up. I've found being happy, strong and positive is most important.

The earliest moment of discovering the tumour I can remember was giving a lecture to a classroom in North Carolina about my artwork. I wanted to speak certain words but I couldn't find the words. I literally had to speak around those words. After that there were small moments like that with my language. Then I had a seizure. I never had a seizure before. My girlfriend saw me having a seizure through facetime while I was at home and she was at work. I don't remember any of it at all, just before and after. I went to the emergency room after that.

My initial reaction to learning about the awake craniotomy surgery was wondering what effect it would have on me. Would it affect my creative side? Would it affect my language? When the procedure was explained to me, I thought, 'They are basically going to have me opened up like the movie Hannibal.' But on the serious side I understood it was the best option to make sure my language was intact after the surgery.

I remember almost everything about that day. It still feels unreal. I remember standing outside the entry door of the surgery room with a nurse, just me and her. Me holding a prayer that my girlfriend wrote on a small card that my grandma told me to repeat before the surgery. I asked the nurse if we could take a second; I'd never had surgery before, so you can imagine how the idea of someone working on your brain while you are partially awake sounded to me. She told me to take as much time as l needed. I stood there before the door and prayed. After that I remember speaking with the neuropsychologist after they partially woke me up to remove the tumour. We went over a couple of object cards, where he would hold a card with an image on it and I would have to say what the image was. I also remember starting to talk about paintings and art; the neuro pronounced an artist's name wrong and I corrected him. Physically, I didn't feel anything; I remember looking underneath some kind of cover or paper that was lifted every time someone wanted to speak to me. Emotionally, I just focused on what I was supposed to do. I didn't think about what was going on beyond the sheet, just the conversation I was having.

Today, I'm grateful for every moment that I have, and I'm making sure I'm working hard because of this experience. I believe I'm more positive than before, and I try to find beauty in everything.

Thanks to Brain Research UK. To donate to the charity, visit their website.

@MillyMcMahon