After being diagnosed, Dr Karabatsou then gave me 3 options.
- Open up my head with a small incision and take a biopsy of the tumour cells to determine the exact grade of the tumour. This would then require further surgery to “de-bulk” (remove) the tumour, as described by options 2 and 3, below.
- I could have brain surgery where I would be asleep and the neuro-surgeons would remove 95-99% of the brain tumour, although this option would almost certainly remove parts of the brain which I would require to function. I could and would lose my cognitive ability to a certain degree to speak, read, write, calculate, parts of my short term memory, complex reasoning and processing situations in my head.
- I could have an “awake craniotomy” where I would be awake for the operation. This would be the best approach so that I could retain as much of my cognitive ability as possible, whilst de-bulking majority of the tumour, allowing me to function normally without affecting my quality of life.
We quite quickly agreed that we would go with option 3, the awake craniotomy, and set the date for the operation for 3 April 2014. Over the proceeding 2 weeks I went for further scans, tests, met the team of neuro-surgeons, my anaesthetist, and met the neuro-psychologist several times.
The day before the operation I met with my neuro-psychologist, Dr Jacki Bambrough, and went through word association testing, a new image every 4 seconds. During the operation, she would sit by me to ensure I was awake and to determine how I was doing with the ongoing word association testing.
On Thursday 3 April 2014 I was the first patient booked in for the day, a 9am start. I met the operating and supporting team and was set on my side in an odd contraption of a bed. They rigged me up so I was comfortable on my side, my right arm falling through a big hole in the bed, my head resting on a large foam pad and a brace set around my head. After I was comfortable and warm, the anaesthetist put me under general anaesthetic and they wheeled me into the operating room.
They kept me asleep while they opened up my head and got through my skull. I was told that took about an hour of being under general anaesthetic before the anaesthetist woke me up. They allowed me to get familiar with the environment of the operating room, to wake up and to start chatting with Dr Bambrough and Dr Karabastou and the other neurosurgeons. I had a pin holding my head in place, a blue sheet over my head extending forward so that I could only really see Dr Bambrough and the laptop with the word association images.
The list of images was essentially objects and animals etc nearly 2 pages long and all I was given was one image at a time on the laptop on 4 second intervals. Once the images reached the end of the list, it was repeated over, and over, and over! If I struggled to pronounce the object or struggled to speak, Dr Bambrough would advise the neuro-surgeons (mainly Dr Karabatsou) not to resect the brain tissue where she was touching, as I would need that for my cognitive abilities.
During the operation I was under local anaesthetic and other drugs or painkillers so that I was comfortable. The brain does not have sensory receptors for touch or pain. Because of the local anaesthetic, I couldn’t feel what the neuro-surgeons were doing while operating through the large triangular shaped hole in my head that they had cut out. I was able to speak to the neuro-psychologist, the anaesthetist and the team of neuro-surgeons. Although I couldn’t feel what they were doing directly, I could feel the pressure against the skin of certain movements, the cold distilled water to constantly clean the area and the suction pump removing fluid/water. They constantly gave me encouragement throughout the operation, especially when I felt any pain or was getting fatigued. I think I even tried to give some back and to say they were doing a great job of the operation!
After several hours of operating, Dr Karabatsou was happy she had resected as much of the tumour as possible without removing what was required to have a good or near normal quality of life, and she was off for her next operation. The remaining neuro-surgeons then cleaned me up, replaced the skull bone they had removed and stitched me up. Going under general anaesthetic is always a risk so they try to avoid it if possible. I was feeling good enough with the help of local anaesthetic and morphine to keep going so the anaesthetist and surgeons decided not to put me under general anaesthetic and kept me awake while cleaning me up and applying the sutures.
In all, I was unconscious for around an hour, and was awake for the remaining 5 hours of the operation. A long 6 hour operation in total!!!
I was then wheeled out of the operating room and into the short-term recovering unit for a few hours. I had constant supervision, testing and checks. After the nurses were happy I was on the road to recovery they wheeled me to my new ward for the next few days. I didn’t sleep for 4 days after surgery. I would have an hours sleep here, an hour there possibly 2-3 hours on one night. I was told later by a friend who is also a neuro-psychologist that the trauma my brain had undergone was massive as you would expect, like a truck hitting a car, and that it was no wonder I couldn’t sleep for several days. The nurses in my ward at Salford Royal Hospital were always really nice and they couldn’t do more to help me! They put up with some grumpy patients and bad situations and take it all in their stride, always so patient and calm. When you show them some respect, have a laugh and a chat with them, it makes their day and their job so much easier and it shows in the mood throughout the ward.
After the 5th day I was discharged, on Monday afternoon 7th April 2014, and was home to recover, to sleep in my own bed and to eat some amazing home cooked meals!