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.