Thursday 19th February
I saw the neurosurgeon today for a second opinion. His receptionist loaded my mulitple scans prior to the appointment, and I was strangely relieved to discover that I still have a brain, and the fatigue, headaches, and concentration difficulties might be because there is still a tumour in it. My intuition has been right again. There was something wrong. There is still a tumour in my right temporal lobe, in my amygdala. There is still some oedema, but he doesn't think I need to take steroids at present.
The scans taken on Monday (17/2/15) were almost identical to the ones that identified the tumour on January 2nd. The neurosurgeon today recommended a right temporal lobectomy, saying there was no need to do it urgently, His first available date is Saturday the28th of February, at the Royal Melbourne Private Hospital. I've booked myself in for that date. I'm feeling incredulous, it's all very surreal. I know I had surgery on January 6th, I have the scar and bone pain to prove it. It's not clear to me if the tumour that's there is still the old one, or if the old one has regrown.
He's going to show my scans to his colleagues, including other neurosurgeons and the oncologist I saw on the 10th, and will let me know about the recommendations from that discussion. He was a very pleasant and affable clinician, who didn't seem put off by a very talkative patient who identified herself and her companions as neuropsychologists at the start of the consult. He indicated it was good to have a patient who understood the brain, scans, and associated terminology, and I imagine it was an unusual experience for him to have a patient who was relieved to discover they had a brain tumour and that they needed surgery for it.
It was good to take a neuropsychological friend along to the appointment with me. She took notes and we were able to dicuss the things he said afterwards. We also had a very animated discussion in the waiting room about the benefits of brain training programs. I could sense the other patients and companions taking an interest in our discussion. I showed her some games on Luminosity, and told her I thought they had poor ecological validity, were frustrating when I can't improve with repeated practice, although they may provide people like me with a baseline and ability to track deterioration over time. I told her how joyful I felt when I was able to complete a crossword puzzle recently, and how i'd prefer to spend my time with friends, either in person, or talking on the telephone, or doing crosswords, or writing, rather than playing games derived from neuropsychological research. These games are intended to measure cognitive function, they're not intended to be fun, and many of them aren't. Some of the Luminosity games are fun initially (like penguin pursuit, pet detective, the barista game, and other tests of flexibility and problem solving), but I find them discouraging when I can't improve, even with repeated practice.
I now understand exactly what patients mean when they say our tests are meaningless to them. I usually used to reply that the tests were normed on healthy people of different ages and backgrounds, so that they allow us to tell if a person is performing as would be expected for their age, education, gender, and ethnic background. It doesn't matter how interesting the tests are to the clients, though I empathise with patients who dislike the tests, because it must be hard to give one's best effort when a test is irritating and seems pointless and unrelated to the concern that has brought you to see the psychologist.
It was good to take a neuropsychological friend along to the appointment with me. She took notes and we were able to dicuss the things he said afterwards. We also had a very animated discussion in the waiting room about the benefits of brain training programs. I could sense the other patients and companions taking an interest in our discussion. I showed her some games on Luminosity, and told her I thought they had poor ecological validity, were frustrating when I can't improve with repeated practice, although they may provide people like me with a baseline and ability to track deterioration over time. I told her how joyful I felt when I was able to complete a crossword puzzle recently, and how i'd prefer to spend my time with friends, either in person, or talking on the telephone, or doing crosswords, or writing, rather than playing games derived from neuropsychological research. These games are intended to measure cognitive function, they're not intended to be fun, and many of them aren't. Some of the Luminosity games are fun initially (like penguin pursuit, pet detective, the barista game, and other tests of flexibility and problem solving), but I find them discouraging when I can't improve, even with repeated practice.
I now understand exactly what patients mean when they say our tests are meaningless to them. I usually used to reply that the tests were normed on healthy people of different ages and backgrounds, so that they allow us to tell if a person is performing as would be expected for their age, education, gender, and ethnic background. It doesn't matter how interesting the tests are to the clients, though I empathise with patients who dislike the tests, because it must be hard to give one's best effort when a test is irritating and seems pointless and unrelated to the concern that has brought you to see the psychologist.
I'm glad I'd planned to got to St Vs tomorrow to catch up with my old Neuropsych, neurology and neurosurgical mates ( I worked there as senior clinical neuropsychologist from 1995 until the end of 2009). I called the friend who I met when he was a neurosurgical registrar, and who has looked at some of my scans over the past couple of years, and who put me in touch with today's neurosurgeon, who was his registrar, 10 years ago, I asked where I'd find the neurosurgeons tomorrow morning, and he said they were having a joint meeting with the neurologists early in the morning, He suggested I bring my scans so they can see them and discuss what to do at their meeting. The thought of being able to benefit from the collective knowledge, wisdom, and experience of my former colleagues is very reassuring. And it will be wonderful to see them again, I've missed them and the intellectual stimulation of their company very much.
I have a meeting in the city on Saturday. Would love to see my Melbourne friends while I'm here, or after the surgery. Xxx
