EEG, strange tastes in my mouth, and making sense of things

It's 930 on Tuesday evening, and I've had a pretty good day. I slept quite deeply for parts of last night, and went with Ben and the boys on the school and work car-ride as I had an EEG scheduled for 9am-ish. I've never had an EEG before, and found the phototic stimulation (a 15x2 cm array of little whitle lights) a little unusual. I had to sit up in an armchair while a very pleasant Croatian technician took my readings, and she said I went to sleep a little by the end. The neurologist saw the EEG readout and said there were spikes in the right anterior temporal area, probably due to scarring from the previous surgery, so I've been started on Dilantin as an anticonvulsant, in addition to the Keppra that I've been taking since surgery.

I'm glad to tell you that the unbidden thoughts of self-harm that had been troubling me intermittently before the surgery on March 1st haven't returned, so I think they were probably due to the tumour growing in my right amygdala and hippocampus, rather than being related to the Keppra I'd been taking for over a year. Although the surgeon in Hobart suggested I change from Keppra to Valproate, I've been taking Keppra twice daily since the last surgery. I still have no memory of the conversation on Sunday when Ben and the boys said I could not remember having had surgery recently. I've been restarted on 3mg of Dexamethasone in the morning, on the recommendation of my medical oncologist, who I will see tomorrow for my first dose of Avastin. There's a risk of protein in the urine, so I have to take a sample in the morning before my treatment, and as far as I know, the treatment regime is still 6 IV infusions of Avastin, one every 2 weeks, for 12 weeks.

I have to see the surgeon in Melbourne on the 14th for a review, and I'll be seeing a radiation oncologist for my first session of stereotactic radiotherapy the next day. I spoke with him today, and he said just one treatment might be necessary.

Things are feeling quite odd this evening. I rearranged the furniture in the sleep-out verandah today, so that the queen-size bed is now accessible from 3 sides, with it's head under the windows to the north, a full view out the windows to the east, and easy access to the powerpoint  and light on the wall to the west, and better ventilation from the heat-duct on the floor on the east. I had a relaxing rest there before and after Ben and the boys came back, even with the sound of the gardeners mowing the lawns and trimming the hedges at the front. I'm bothered by an ongoing strange taste since then, a little like the curries that Ben brought home last night, so I'll take a couple of ondansetron in case the taste is part of an aura. I don't want to have seizures again, in any form.

My body felt warm and relaxed during my afternoon nap, but my sleepy mind was troubled by the realization that I have a condition that could well lead to my demise from this life. I don't want that to happen, there are so many things I want to enjoy and achieve for many years to come. I'm going to list some of them here, in case it makes me feel better.

1. Travel with Ben and the boys, or short trips on my own: around Australia to see family and friends, and to see beautiful spots that we haven't yet visited. South east Asia, parts of India, Ladakh, Nepal, Japan, Europe, South America, parts of the USA and Canada. Some Pacific Islands, and New Zealand.
2. I'd like to do some more paintings. I enjoyed it a lot during my HSC Art in year 12, and it would be good to take up the brushes and canvas again.
3. I'd like to sing with the MSO Chorus again if they'll let me, and if I'm able. It was mind-blowing and inspiring to sing works by Beethoven, Mahler, Brahms, Schnittke, Mozart, Arvo Pärt, and others under the direction of Jonathan Grieves-Smith, with the MSO in front of us for performances.
4. catching up with family and friends who I've known over my life. I love so many of them, it would be good to see them again, to hear the stories of their lives
5. snorkelling over a coral reef. I remember spending about an hour interacting with 2 young and one parent clown-fish under their sea-anenome host at a reef off the shore of the the northernmost beach on Tioman Island on Malaysia's east coast in 1992. The babies would come out and make puffy  and indignant faces at my fingers, and the mother would shepherd them back to the anenome, and would stare at me from her shelter. It was a magical time for me, I felt blessed and relaxed in nature.
6. I want to get on top of sorting out the papers on the dining table for tax and vet insurance forms, and to rearrange our many bookcases and get the boys Lego sets back into their boxes. I put 3 boxes away in wardrobes upstairs today, and realised that if I just do one or two sets a day, it should be finished in a month or so. This is a very positive realisation, because I had been feeling overwhelmed by the volume of work to be done, but I can see that if I just do one or a few tasks each day, I will eventually be on top of things, and will feel the bliss of order instead of the anxiety caused by disorganisation.
7. Time for more sleep. It's 1007pm, and I have to be up early in the morning for my April Fool's Day dose of Avastin. I hope I enjoy being out and about early in the morning as much as I did today. Seeing a variety of familiar and unfamiliar people at the hospital was enjoyable and invigorating. I'm hoping to see two friends at home on other days this week.

Feeling tired, waiting for Avastin to start

I've slept a lot nearly every day this week, and haven't achieved much around the house.
I was supposed to start Avastin on Wednesday, but the surgeon said i should start it next week. The following link gives me hope that it will help me start to feel less tired and more able to get things done around the house. http://www.btsurvivor.com/bb/viewtopic.php?t=2166

We're still waiting to hear if we should have stereotaxic radiotherapy for the tumour that the surgeon couldn't take out. This would need to be done in Melbourne, and would only affect the area of tumour that was inoperable. However, the Avastin would limit angiogenesis in the residual tumour, and would hopefully also stop any new tumour from growing anywhere else in my brain.

I've been sleeping poorly at night, and having very strange dreams in which my reality seems to be turned upside down or inside out. I would just like to feel normal again, and to not be bothered by the concern that this thing could kill me, or that I've wasted my life in some way.

I need to sleep now, it's after 930pm, and I've found that I sleep very well in Nathaniel's single bed. I tried sleeping between the two boys in my bed last night while Ben was in Hobart, but it grew too hot, and although they don't wriggle much, I didn't sleep well.

David has rowing at 7 in the morning, I hope I wake feeling energised and refreshed enough to go and watch it, it will be good to see his second experience on the water.

3 weeks and 2 days since craniotomy #4

412pm and I'm back in bed, needing some more sleep after sleeping in until after midday. My face is feeling a little numb and tingly, and I was bothered by a feeling of intermittent nausea throughout the morning. It seems to have passed now, thankfully. I've been having strange cartoon-like dreams in which things don't seem real, or the characters argue or complain that things aren't real. I suppose my existence is a little like that right now.

I saw the medical oncologist yesterday, and he was happy for me to start the Avastin tomorrow morning, but then the neurosurgeon told him to wait until next week, which will be 4 weeks after surgery. The neurosurgeon also said he's looking for a radiation oncologist who can give me stereotactic radiotherapy (radiotherapy guided by brain imaging), so it looks like we might be moving  back to Melbourne. If anyone over there would like to recommend suburbs with good state primary and secondary schools, please let me know by email. Moving house is one of my least favourite activities, but I'm willing to consider it if it helps defeat this nasty form of cancer. Ben and the boys had a lovely time when we were over there for the surgery, and I also enjoyed seeing several of the friends I'd made in the 24 years I spent studying, working, and teaching over there.

Thanks to those of you who have written to me recently (Elizabeth, Caroline, Areti, Barbara), it's nice to be in your thoughts, and I hope we can be in contact again soon.

David loved his first go at rowing on Saturday morning, and will have another session after school today. Nathaniel is off at year 4 camp (at Camp Clayton, near Ulverstone), so we're hoping he returns tomorrow with many happy memories of diverse experiences.

Time for me to snatch a little more sleep and hopefully dream that things are real, not like some bizarre extract from SpongeBob SquarePants, or Adventure time.

2 weeks and 4 days after surgery

I've been quite sleepy this week. Not sleeping well at night because my head is still to tender for me to lie on my right, and dosing through much of the day because I didn't sleep well at night. I spent most of Monday, Tuesday, and Wednesday in bed sleeping, and again yesterday. Today (Friday) my mother came in to visit and we discovered that we both prefer to sort through household items when we have company, so we sat together in the boys' bedroom and sorted through their clothes together. I started to pull out things for Nathaniel's year 4 camp, which starts next Monday, and I managed to get all the boys' clothes sorted and put away this evening.

I had to see  my oncologist this afternoon (20.3.15) to get a patient travel assistance form and some income protection insurance forms completed. I asked him if my remaining tumour can be treated with radiotherapy as well as the Avastin. He's asked for advice from Melbourne, which I hope will come next week.
I was sad to discover more information about my most recent surgery. My brain was reported to be quite swollen when they opened me up, and there was tumour growing along the walls of the lateral ventricle and into the basal ganglia and internal capsule. This sounds more extensive than the residual tumour that the surgeon said was wrapped around a blood vessel and didn't want to remove it in case it left me paralysed.

I felt gutted after reading the surgeon's report - not because he hadn't told me all this, but because it sounds pretty damned serious, and I'm hoping and praying intently that we can do something about it. I'm also counting my blessings that I'm still alive and able to get around, both physically and mentally.
I'll update the blog once I discover if the remaining tumour can be treated with stereotaxic radiotherapy.

David starts his year 7  rowing tomorrow morning (March 21st, 2015). I'm looking forward to seeing him and his friends have their first experience in a mixed 8 (there were 23 boys and girls who put their hands up for rowing as their summer sport, tomorrow will be their first go on the water). I was bow in the first ever girls' 4 at Launceston Church Grammar School in 1985, and was the first girl at the school to ever receive a "half-blue" for contribution to the sport. I'd never done particularly well in any sports before (swimming and netball were the only sports that I contributed to, I was ok at swimming, but pretty uncoordinated for netball)

I'm still feeling gutted after seeing the surgeon's report today. It all feels very surreal, and I just want to feel better and to help my family to be happy and positive with each other, rather than stressed and anxious and argumentative. I'm trying to turn my worries around and to eliminate them, so that I can focus on all the good that has happened in the past, and that will happen in the future. I'm not giving up on anything, even though many things seem quite surreal and unbelievable at present. I'm going to keep giving thanks that I've continued to survive, and to keep working on prayer, visualisation, and meditation to help cure myself and ensure a healthy and happy future ahead.

Must go, time for my nighttime sleep.

Reviewing my MRI from April 2014 in the light of my fourth craniotomy

I took this photo of my MRI in April last year because I couldn't recall seeing the olfactory sulci standing out so clearly on other scans I'd viewed in my 20-odd years of viewing brain scans. It was only after reading the MRI report that I noticed the small circular ring-enhancing lesion in the right temporal lobe, which is on the left in the image. (Remember, left = right on brain scans). The lesion is near the top of my brain stem, and appears to be the bit that the surgeon said he did not remove 2 weeks ago (he was worried that doing so might leave me paralysed because the tumour was wrapped around a blood vessel near the brain stem). I found his candid and honest expression of his reasoning to be very reassuring at the time, and it still is, but I'm developed a growing concern that this little thing might prove fatal. My surgeon and the oncologist in Melbourne were both hopeful that Avastin might be able to counteract this remaining area of tumour. I'm not sure when I'll start taking the Avastin - my scalp wounds from the surgery need to be healed by then, the scars are still a little scabby, and the area is tender. Avastin stops angiogensis (formation of new blood vessels), and may cause old tumours to die. I will need to take the Avastin every 2 weeks for 12 weeks. Ben told the radiation oncologist about the residual tumour, and he said he may be able to zap it with radiotherapy.  I'll see him tomorrow and discuss our options.

 I've recently been bothered by the thought that this thing could kill me, and dreams in which I die. In one cartoon-like dream, a guy with a cartoon-like machine-gun shot me in the chest several times, and started asking why I was still alive because he'd tried to kill me. It didn't make any sense to me at all. I don't want to die any time soon, I'm not finished with this life yet. I'm not giving up hope that I will survive for many enjoyable years ahead, but things seem very odd now that we're back home in Tasmania. I look back on my life and hope I've achieved something valuable with it, that I've contributed to society in some small way. Catching up with old friends and former colleagues and students in Melbourne reassured me that my life hasn't been entirely meaningless. I hope to create more meaning in it once I get over this sleepy phase of my post surgical recovery.

The small dark area at the bottom of this picture, on the right in the image shows cerebrospinal fluid (CSF) filling the area where the second GBM was removed from my left occipital lobe in September 2013. CSF bathes and surrounds the brain in liquid, and appears dark on MRIs because it is low in density. MRI images use pulses of magnetic resonance to spin molecules.  High-density materials like bone or white-matter tracts in the brain, appear brighter than lower density materials like csf or grey matter. The two halves of my brain in this image are not perfectly symmetrical because I probably had my head on a bit of an angle in the machine. If I had been level, then my eyeballs should have looked the same.

 I'm happy to realise that writing this post has made me feel more energised and hopeful than I did before I wrote it. More writing will happen again soon.

Day3 & 4 after surgery #4

Day 3 
My tall, dark and cheerful surgeon just said I can have a shower and get my hair and dressing wet, as long as they put a new dry dressing on top. Up to now, they've been reluctant to use a waterproof dressing, and I didn't want to shower if I couldn't wet my hair. I was so delighted when he said I could shower and get the dressing wet, I told him I could kiss him, then quickly said that I wasn't being frontal. He said "neuropsychologicaly, you seem perfectly fine to me." He also said that days 3-4 after surgery are usually the worst for pain, fatigue, and emotional lability after anterior temporal lobectomies. He removed a golf-ball sized tumour along with my hippocampus , amygdala, and the anterior (front) third of my right temporal lobe. There's still a little nodule of tumour wrapped around a blood vessel near my brain stem or cerebellum. He said he didn't want to take that out and leave me with paralysis (sounds reasonable to me).  I'm hoping the Avastin will stop it from progressing, and maybe some radiotherapy too, if I can have it at that site. He's sent off my tumour sample for some extra tests that may help with planning other treatment options. The histology results aren't back yet, but he said it looked like a GBM. I'm hoping it was a lower grade tumour. Ding! Round 4 of the big fight has begun. I don't know who put me up for this fight, but I'm going to give it my best shot. Love to all, and thanks for wishing me well. Prayers and healing wishes can't do any harm, and are probably helping in a umber of ways.

Day 4. 
I was in a lot of pain last night, it made it hard to sleep, just like the night before, but at least I wasn't woken by noisy nurses happily greeting each other in the nearby nurses' station. I'm glad they like each other and enjoy working here, but I do appreciate it when they keep the volume down. I said that to one of them, and they've been better tonight.

All my neurological functions have remained normal, apart from some mild incoordination with the left foot, but I can walk unassisted, though every step I take causes an uncomfortable thudding sensation through my heels, up my body, through my chest and to my head. I feel like a giant human tuning fork. No-one can tell me why. Another physio assessed me and gave me more exercises to do. My BP dropped a little today (90/something), but I hadn't been drinking enough water. My neutrophils are down to 0.5 (Low, but not the worst they've ever been)., and my other bloods are normalising. My temperature is being taken 3 times/day just in case I get an infection (no more febrile neutropenia, please! I've had more than a fair share). As a precaution, I'm not supposed to handle flowers, and I'm going to avoid hugs and kisses for a while.

I was visited by three neuropsych friends today  - one, my PhD supervisor and long-term mentor and friend, another, a friend I used to work with at St Vincent's, who I met when she was a student, and the other, a student I supervised for her research project at Victoria University. She was excited to tell me that a Monash student wants to replicate and extend her research into cross-cultural neuropsychological assessment of elderly Greek Australians. She me her first supervisor had told her not to tire me out by staying for more than 20-30 minutes, but I reassured her that I am usually revitalised by all my visitors, even if they come when I'm somewhat tired.

I've been more sensitive to light and sound after this surgery, it makes me a bit irritable, particularly when the kids muck around. My eyes have started to sting when they check that my pupils are equal and reactive to light (PEARL), and I feel my heart slowly breaking when the kids do things noisy or active that irritate me. David has relearnt his favourite game from when he was 2: hiding behind the curtains and spinning around.  He even says things like (where am I? or "you can't find him") Very cute regression in a boy who will soon be 13. 

We watched the Second Best Exotic Marigold Hotel together on Sunday evening (the night before surgery), and he held my hand most of the way through the movie. It's the first time I've ever held a 12 year old boy's hand in a cinema. It was very special because he's my son and is growing into a compassionate and thoughtful young man, and I realised that I should be able to hold his hand at the movies for many more years to come, until he prefers the company of girls or his friends. And Nathaniel's hand will be there for me too. I've never held two teenage boys' hands at the movies before, and Ben doesn't particularly like movies or fiction (poor thing), but the boys do enjoy both, and I read all the Harry Potter books to them when they were young, and the 'How to train your dragon ' series a few years ago. They're developing a strong appreciation of fantasy novels, and have been having a ball with their father in Melbourne. They did a  'behind the scenes' tour at the Aquarium, and couldn't stop telling me details about it for a day  or two later. They also went rock climbing at a place called Hard Rock in the city, and will go to a place called clip and glide (or similar) with some other friends on Monday. So they're having an educational time, even though they're missing school. I'll see if I can get a refund on school fees for all the weeks they've missed when I've been in hospital (7 or 8 weeks by now, since 2013).

My neck is very sore along the spine, hopefully from having weird pillows and needing to sleep on my left side with the bed head at a 45 degree angle. I might ask the resident about it. I've discovered that GBMs can migrate to the spinal cord, though it happens rarely. I hope and pray that it's not the case. I've had more than my fair share of tumours (though no tumours are fair, they are evil mutants).

My surgeon came again when my last visitor was here this evening. He gave me a printout of the pathology report, which included, for the first time, the immunohistology results. These results will tell the oncologists which therapies are likely or less likely to work for me. It was MDMT positive, meaning that Temodal mightn't work, so we don't  need to worry so much about my bad reaction to it in December 2013, and we can try a couple of older chemo agents this time, as well as Avastin, which should commence in about 3 weeks time.

I'll be able to leave hospital when my pain is well-controlled, and then we should be able to fly home on the 14th of March.

I had a lovely pathology nurse called Gracie this morning. She was born in Penang, and said her father named her after his favourite singer when WWII ended. "Gracie Fields?" I asked. "Yes", she said, deepening our instant rapport. I told her I want to take my family to Malaysia and Penang one day, and she said she could show us around. We had a good talk about corruption and compassion and buddhist philosophy, and she told me she would prey for a miracle for me, and that I'd already had a miracle in surviving this long after the first brain tumours. She was delightful, and it would be good to see her every day.

My surgeon also said that being young and female is a good prognostic indicator for my tumour type, and said something about 20% of people surviving 10 years without tumour progression or recurrence, which is better than a lot of the other stats I've encountered for this cursed disease, which is the most common form of brain tumours in adults.

Our poor dog Ginny (10 year old Tibetan mastiff) is at the Vet after she started vomiting at the kennels. The vet did some tests and ended up doing abdominal surgery - found nothing terribly  sinister, though the pathology isn't back yet. There was some pus in her uterus (we never got around to having her neutered, so Ben told them to do it), and there was a tumour on the adrenal gland (not discovered by ultrasound when she first developed Cushings disease about 8 years ago. They thought the Cushings was caused by a pituitary tumour, but she didn't have any other hormonal imbalances). The vet told ben than removing the adrenal tumour might not  be good for her. There were other issues in her abdomen, but I can't remember all of them. I'm a little worried, because the last female dog we had (Dolma) died unexpectedly after surgery to remove multiple lumps under her nipples. That was on March 3rd 2002, the first day of my maternity leave before I had David, and my sister's birthday. Then poor little Popo (Patrul) our 15 yo Tibetan spaniel, succumbed to cutaneous and cerebral lymphoma the week after my first craniotomy in 2013.  I hope that Ginny fully recovers from her surgery and loses the discomfort in walking that has been bothering her for the last few months. I've asked my mother to go and visit her and give her cuddles and treats for us. It's strange that I've met 2 gentle and kind women this week with names like Ginnys: a 22yo nurse called Gilly (short for Gilman, an arabic name chosen by her grandmother), and Ginnie (pronounced with a soft 'g'), a former nurse who brought me a little gift from the city, and who's husband needed surgery for spinal stenosis. I'm doing well with remembering names and faces, even though my visual memory should be affected by the surgery. Maybe my visual memory is bilaterally represented? (verbal memory is more in the left temporal lobe).

It will be so nice to go home to my own bed. The boys have a big weekend planned with cousins and friends, and I'm hoping to see more friends before we go home after the 13th.

Time for bed and a chat with the registrar.

PS I'm not on any dexamethasone this time, because there's no oedema, but I've started having wakeful dreams like I did after the first craniotomy. They are quite pleasant. My body is asleep, my mind is active, I try to still it and meditate, and then I drift into a dream-like state that I can't remember fully afterwards. I hope I see and sense the golden light again.

PPS. They say we should pay attention to our intuition. I hope that meeting so many nice people with names like Ginny's augers well for her, and that Gracie's sunny prayer for a miracle is also fulfilled.  I had a good feeling about the surgeon when I first met him, and it's persistent. He's open and honest and gives detailed explanations, and doesn't appear to be freaked out by having a talkative neuropsychologist as a patient. The anaesthetist was also excellent, very candid and concerned to improve my postoperative recovery symptoms by giving me less medazolam than is usually given (he said it causes confusion). His name was Ben, like my husband, and the theatre nurse's name was Elizabeth, like my sister's name.

I'm feeling peaceful and well-rested tonight. Writing here often has that effect on me.

Before the third tumour was found in January, I sensed that a new tumour was growing, and I was right. I was increasingly sleepy during the day, I had episodes of dizziness, headache, and some trouble with visuospatial memory for my home town, and increased urinary frequency and an episode of urinary incontinence. I was developing an increased desire to write my autobiography (a wonderful life), and to write letters to my children, and to see people in case the end was nigh.  I don't feel those compulsions now, though I want to see people because it's been far too long in some cases.

It was awful to hear my Aunty Betty in tears on the phone yesterday when she rang to see how I was. Mum says that Betty has been tearful quite often lately because she is in pain (and possibly worried about uncle George, who used to be her full-time carer, until he fell and fractured a wrist). It's awful to hear other people in distress (one reason why I did neuropsychology rather than clinical psych - a supervisor in my basic counselling skills course said I tended to "over empathise" with clients in role plays, and didn't offer m any solutions. the good thing about neuropsych is that you explore the patient's symptoms and history and try to answer questions about their brain function (it's a bit like being a detective), and while some patients have very unpleasant and distressing symptoms or incurable conditions, dealing with the patients through supportive interviews and treating the assessment as a therapeutic intervention suits my philosophy of wanting to help people understand themselves better, and to give them suggestions on how to deal with their problems, which are identified through formal assessment, rather than purely on self-report. (A formal and comprehensive assessment allows us to give more detailed and individually-tailored recommendations, to both the patient and their family or  caregivers).

I'm going to start a list of good things to say to people with cancer. One that I got today was "Hang in there". It recognises that I've been hanging in there, unlike the all-too frequent "be positive" or "be strong", which always causes an involuntary and subvocal "WTF do you think I've been doing?" I suppose that I like statements recognising the effort put in by a person with cancer to get up every morning and not give up on life when it's often too cruel and unfair (e.g. stay positive, stay strong). I've been incredibly blessed and lucky to have survived what I've been through, and I'm never going to give up hope. there is always hope, and our souls are eternal, so we'll all meet again in other dimensions. Love is the most powerful force in the universe, the creator of all things, and love unites us all across time and space (one of my oncologists should be happy about my spiritual development in the past couple of years. It would have been nice to have experienced some form of spiritual development without the cancer, but I'm feeling blessed and grateful, and hope that my experiences might help others.)

Time for bed and a chat with the registrar. My neck is still crackly and stiff.

313am. I woke up crying after a surreal dream involving cackling witches dressed in black and riding broomsticks in the wind outside my windows. My head was hurting, but not too badly, and when I pressed the call bell, the nurse came quickly, heard me crying, and asked why I hadn't buzzed earlier. I said I'd just woken up, and wondered if my endone was due. When she and her colleague came back, they didn't want me to say my name or birthdate (as everyone else does), before giving me the tablet. I said I needed to go to the loo, and they said I needed to swallow the pill before they left, because they had to see me take it. I don't know why they couldn't have waited. I wasn't going to take long, and they didn't ask. I don't recall meeting either of them before. They're the first impatient and dismissive nurses I've met dring this admission. The one who answered my initial call seemed concerned that I was crying at first, but didn't mention it when she came back with the Endone, leaving me feeling like I'd inconvenienced them, and that it would have been too much effort to enter into a discussion about why I was crying. (a contrast to a couple of other nurses who said they'd be there for me if I ever needed a shoulder to cry on).  It's hard for me to cry about what I'm going through. I wish, in a way, that I'd gone to the loo and had a good sob before I had asked for the pain relief.

The moment has passed now, and I need to tell you some good news. Last night, before I slept, I successfully completed a large crossword puzzle,  a word search, another work puzzle, and a brain teaser: " A teacher is giving her class lollies to reward good behaviour. If each child gets three lollies, the teacher will have two lollies left. But if she only gives each student two lollies, she can keep 18 for herself. How many lollies does she have, and how many students/" (my first simultaneous equation since HSC maths in 1984, and I had to work out how to do it again on my own). I felt triumphant. And I'm not making any errors now that I'm typing on my laptop instead of my phone, which one person interpreted as a sign of visual and cognitive impairment.

It just goes to show what many neuropsychologists know - the brain is an amazingly resilient organ, and people can still function quite well after strokes, tumours, and other forms of acquired brain injury, including congenital defects. The biggest mistake that family and friends sometimes make is to jump to conclusions about how well the brain is functioning after any acquired injury. The problems with untrained people making assumptions about brain function include the fact that there are many factors that influence cognitive function and dysfunction, including age, education, gender, ethnicity, mood, motivation, alertness, illness, pain, drugs and medication, sensorimotor function (vision, hearing, coordination), rapport with the person making the observations or doing the testing, psychosocial issues that may distract people from the task at hand through ongoing inner conversations, and many other factors. Neuropsychology is a highly specialised and research-based area of psychology, and it takes at least a 2-year master's degree involving at least 1000 hours of supervised clinical experience, plus coursework and a research project, then 2 years in a supervised registrar position, for people to become neuropsychologists in Australia in this decade. While it is good that people are increasingly interested in how the brain works, a lot of common knowledge about the brain is actually rubbish or mythology, including the 'left-brain right-brain' nonsense. Everyone is born with two cerebral hemispheres, they are very rarely disconnected, and they communicate with each other through an extensive network of fibres that run from left to right. Some people may be better at, or prefer, visual or verbal tasks, but that doesn't make them 'right' or 'left' brained. If I had any hair left, I'd be tearing it out in frustration at these thoughts.

I hope I'll be able to help improve community understanding of brain disorders, and reduce ignorance, pessimistic, and prejudiced attitudes towards people who have had brain injuries of any sort (including alcohol-related brain damage, meningitis, encephalitis, abscesses, anoxia/hypoxia, stroke, traumatic brain injury, brain tumours, and stroke). Our brains are very special organs that allow us to remember, imagine, create, communicate, move, dream, and feel emotions. It distresses me that someone presumed my recent lack of proofreading of my Facebook posts was a sign of newly acquired visual and cognitive impairment. My attention is fluctuating because I have a lot on my plate at present, and I have just got through my 6th major surgery in 2 years. Before the 5th surgery, in January, I was still recovering from the CT and RT for the first two tumours. The most recent operation went for 6 hours, and a tennis-ball sized portion of my brain was removed along with the golf-ball sized tumour within it. If you don't realise, I am bloody lucky to still be alive and able to type at 3am. It could be far, far worse. (my eyes still hurt from looking at the screen while editing this post on my laptop 2 weeks after surgery)

I do not want or need a neuropsychological assessment. I have full insight into my cognitive strengths and weaknesses, and know what I need to do about them. Luminosity gives me the chance to check various cognitive abilities, and magazines give me an entertaining and fun sense of accomplishment because I now have the time to do crosswords and other puzzles, and I found them easier last night than I had in years, because my mind wasn't preoccupied with the study, work, or household tasks that I was putting off.   I need to work on processing the emotional impact of this condition and the way my life has been turned upside down in the last two years. I need to interact, in person, with people I love, and I need to focus on enjoying life, one day at a time, rather than trying to plan too far into the future.

I wish the blasted wind would stop whining by the windows. I'll block it out with some music on my iPhone, and remember the lovely conversation I had with mum tonight.

Making the most of the day before surgery

I'm about to sleep after a wonderful day in melbourne. Our hotel in Lygon St (The Downtowner) is much more pleasant than the seedy joint in Sydney Rd, Coburg, where the other residents smoked, argued, and swore nastily outside our room. It's peaceful here, and fantastic to be so close to everything on Lygon St. We had breakfast at an italian place over the road, and were joined by my old housemate Debbie and her family. Matt took our boys and their son Jasper down to the park on Lygon and Argyle St to play for a while (Nathaniel said they were there for 2 hours), while Deb and I chatted and devised a plan to check out our old place in Barkly St Carlton. We thought we'd write a letter to the residents, including some photos taken when we lived there, and asking if they'd mind if we came to visit some time. I found that house with a couple of friends in January 1989, and lived there until 1995, when I moved to 202 Waterdale Rd in Ivanhoe (some of you may remember my elderly landlady, Del, who used to keep her oven stocked with Chivas Regal, which she drank every night. A lovely house to stay in, I had a flat at the back, she lived at the front, and whenever I came home and popped in to see her, she said "Oh, my wandering star! Where have you been?" 

I had a wonderful Thai massage in cardigan st, the best massage I've had in 25 years. I could cope with treatment like that every day. I felt like I was floating down the street as we walked to the museum afterwards.
While on Lygon St, I also caught up with my former VU student and current friend  Nancy Salton, and we discussed getting her D.Psych research project published. It was so good to see her again, though I was sad that little baby Patrick stayed at home  I haven't met him yet.  I then met some other former students and current friends of mine at the museum.  Cressida MacCuspie reminded me that she is Nancy's cousin, she brought her daughter Ava who went off with Ben and our boys for an excited tour around the museum. I also caught up with a couple of former students-turned friends, Alexia Pavlis (VU) and Chrisitne Canty (who nursed David when he was a baby and I took did some sessional lecturing at Melbourne Uni. Alexia brought 4yo Killian, who remembered me from last week, and who David helped climb the ladder to the slide in the playground. Christine brought Jack and Len, who were as happy as Killian to give me little boy hugs. Chris and Alexia did locus at St Vs when I worked there, and Cressida had two placements there in the mid '90s, so it was like being with neuropsychological family. Another neuropsychologist who did a placement at St Vs, Sara Fratti  came with her husband Fede, their toddler Agostino, and her father. If we move back to Melbourne, I'm going to learn Italian, and practice my conversation with Sara and Fede. When I'm well enough to travel overseas, I asked Sara if she could advise me on good places to visit in Italy, places where we wouldn't be surrounded by tourists or excessive busyness. I want to see how real people live, traditional towns and villages. Taking to my Thai masseuse today reminded me that I hate overdeveloped, overly busy, tourist-infested places.  

There are a number of very long sofas just inside the entrance to the museum, which were perfect for sitting and talking to friends with toddlers. We then went back to Brunettis where we saw one of Ben's friends with her daughter. and I couldn't resist seeing a movie at Cinema Nova (for old times' sake). It still had the purple velvet walls and seats from 20 years ago. David and I saw The Second Best Exotic Marigold Hotel, and it took me on another trip down memory lane, being set in Jaipur, which Ben and I visited in 1998. David held my hand for most of the movie, so sweet. We found Anne Sculthorpe and her partner  Mal waiting outside for us (David is now taller than Anne), and they showed us a great burger shop where I bought a delicious salad (pomegranate, goats cheese, and grilled chicken), and David wasn't hungry, but was happy to have chips. I'm feeling full and satisfied with catching up with so many beloved friends today. I must sleep now, we're waking at 6 tomorrow, taking a taxi to the hospital at 640, I get admitted at 7, and surgery is scheduled for 9am. I have to fast from midnight, which won't be a problem, because I don't think i could eat another thing.

I'm glad I wasn't admitted to hospital today. It was wonderful to be able to catch up with friends and have pleasant experiences today. I hadn't planned to see a movie or have a massage, but doing so allowed me to relive some of my favourite experiences from my early adulthood. Keeping so busy has prevented me from worrying. I suspect I will sleep deeply tonight and dream of massages in bamboo huts on tropical shores, and of laughing with friends over fine food and champagne. I also hope to dream of being fully recovered, and of all the holidays and wonderful experiences we'll be able to have as a family. 

I explained to someone that my tumour is a little like a patch of mould in the centre of a piece of bread. If you just cut out the mould and leave the bread alone, the mould might grow back because it had sent tendrils out through the bread. The planned anterior temporal lobectomy is akin to removing the mould and a larger portion of  the surrounding bread, leaving the crust and some of the outer bread. The treatment with radiotherapy and avastin will be like putting the bread in a sterile container in the fridge, to reduce the chance of the mould growing again. Cancer isn't a fungus, by the way, but I found another article about the role of cytomegalovirus (CMV) in GBM, which suggested that other therapies might become available soon. http://youcancatchcancer.com/2015/02/28/cytomegalovirus-in-human-brain-tumors-role-in-pathogenesis-and-potential-treatment-options/

There is always hope. I will be looking at going somewhere overseas where we can pay for immunotherapy treatment that will help my immune system to recognise GBM cells and attack them. There's also a wearable electronic device by a company called Novocure which has been approved by the FDA in the US, and has been shown to improve outcomes for people with GBM. We'll be looking into that as well in the next couple of weeks.

I am so tired now, my eyes are beginning to ache.

I'm looking forward to posting an update sometime tomorrow. God bless all of you, and thanks so much for your comments and messages. My life is so rich for knowing you all. Don't be shy about keeping in touch after surgery.

For those of you in Melbourne, I probably won't be ready for visitors until Tuesday or Wednesday, and visits will need to be brief (20-30 minutes), as I've been very tired after past brain operations. A brief text message might help me to coordinate visits You don't need to bring me anything but your company, or maybe send me a card if you can't make it. I'm thinking of all of you, and look forward to seeing many of you some time soon. Sending you  love and wishing you all a long life, good health, good fortune, and much happiness.