Making the most of things before brain surgery #4

Waiting for surgery doesn't get any easier, even though I've been through it so many times before. There's still a sense of impending doom, even though I try to keep occupied and to maintain a positive and hopeful frame of mind. Everything is going to be okay, even though I chose a crappy cheap motel that smells of cigarette smoke and is so close to Sydney Rd that I could barely sleep last night. There was lots of traffic for most of the night, including trucks, trams, and at least one car going frighteningly fast. There was a raucous orchestra of crickets playing through the night, coming from the two vacant and overgrown blocks next door. We've closed the windows and the bathroom door tonight, and I'm sleeping with the boys in one room while Ben sleeps alone with the air conditioner on (it's warm, but not that hot).

We managed to find a much nicer place on Lygon St in Carlton, where we've stayed before, and we're going there tomorrow. It was lucky that they could fit us in. This place isn't far from the old Pentridge Prison, where Ronald Ryan was the last person to receive capital punishment in 1972. I sense a lot of unhappiness and suffering in this area, just like I did at Port Arthur in Tasmania whenever I went there before the massacre in 1996. It might just be a fertile imagination, but I can sense wickedness as well as human suffering in the vicinity of this motel, which is why I'm sleeping with the boys in the room by the door tonight.

I'm feeling the cold quite badly these days, particularly around my surgical scar, and my head has been aching quite a lot lately. I hope it's not the tumour growing some more.

I had a pre surgical MRI this afternoon. I had to give some blood for presurgical checks before that, and the nurse had a lot of trouble getting the cannula in. Then I realised it was because she had my arm extended straight out in front of me. When I bent my elbow like they do in launceston, my good vein became visible at once, and she was able to access it without any trouble. She left the cannula in for the MRI afterwards, it was over pretty quickly, and I haven't heard anything about it since, not that I expected to.

Nathaniel just read what I've written, and said I'm very brave not to cry or be afraid. It has brought a tear to my eye, and I have a clutching sensation in my chest. I told him I'm brave for him, and for David. What choice do I have? I can't succumb to fear, to a self-generated tsunami of what-ifs and speculation.

I've been on the phone to several friends tonight, and should catch up with most of them on the weekend. It will be good.

We ate at Lemongrass Thai restaurant tonight, ordering less than the last time Ben and I feasted there, but still walked away feeling like we'd eaten too much. It was spectacular. David wanted gelati, and to get it , we walked past the park where, in 1989,  I sat and ate gelati and fell in love with a boy I'd just met. We also walked along Grattan St, at the southern end of the University of Melbourne, past the building that used to house the English Department, and the school of graduate studies, where I submitted my PhD thesis. I felt a desire to give the boys a tour of the uni, so they could see my old stomping grounds, but it was busy with lots of energetic and confident young people in the first week or so of the new year. I  would still like to take the boys around one day, but for the almost smug  attitude of the students who were obviously congratulating themselves and each other for being bright enough to gain entry to the university.

I had a good time studying there, but never felt like I was particularly bright, and I couldn't relate to the self-congratulatory attitude of many of my peers in the first weeks. I guess I didn't appreciate the competition for places there, having come from Tasmania, where nearly everyone could get a spot at uni.

The crickets are still singing tonight, and the sound is passing through closed windows and doors.
I hope I'll sleep better, and look forward to seeing my nephew Stephen and his girlfriend Stephanie tomorrow morning, plus a number of other friends and family over the weekend.

I wish I didn't have to have surgery again, but the tumour has to be removed before it grows big enough to kill me, or before it seeds more tumours throughout my brain. Nathaniel said he wished there was no cancer in the world, or that there was a cure for cancer, and viruses. He's a deep thinking little fellow, and I adore him, especially while he retains some of the little boy sweetness, while David is developing an adolescent grunt and attitude to match.

Must sleep now. The crickets are going to become a choir of angels, singing healing prayers for the entire world. They sound like crickets because the radio isn't tuned properly. I'll try to adjust it with my mind.

Sleep, drumming, headaches, and anticipating surgery

I slept deeply through most of the day on Tuesday, I was just so tired, I hoped that it would help me feel more energised. It's probably good that I did sleep so much. We went to a Taiko drumming class in the evening, and it was far more physical than I imagined it would be. It reminded me of my old karate days - I trained in Seido Karate from 1992-1994 in Carlton under Senpai Darrel Dodds, and at the main school in Geelong under Sensei Melvyn Nelis. I enjoyed it so much, I used to drive to Geelong a couple of times a week, particularly for the weekend classes. I reached 3rd kyu (3 below black belt), but gave it up because I had just started work as a neuropsychologist at the North Eastern Metropolitan Psychiatric Service (NEMPS), aka Mont Park, Plenty, and Larundel psychiatric hospitals in Bundoora. I had just completed data collection for my PhD, and was meant to be writing it up, but I met Ben that year, and found that I couldn't dedicate myself to karate, work, study, and a new romance. Also, I didn't like kumite (sparring) at the level I had reached. It was supposed to be light contact sparring, not full contact, and if your opponent made contact with you, you were supposed to acknowledge it. There was one woman I sparred who was older and a higher grade than me, but she never acknowledged it when I made contact with her, and she nearly winded me a couple of times (not light or controlled contact at all). This made me very frustrated, and we weren't meant to get frustrated during sparring, so I gave up attending training, and only missed the friends i had made and the discipline and meditativeness of kata (choreographed sequences of movements), After looking at YouTube clips of Taiko drumming, I could see that it is a very physical and very Japanese art form, and that doing it would make us all much fitter (drummers are meant to stand in horse or straddle stance (kiba dachi) and raise their hands high above their heads. It made me feel quite dizzy at one stage, and I had to sit down. African drumming might be more suited to my temperament. I crave peaceful music at the moment, not militaristic themes. 

After all that. I slept like a log last night, and woke after dreaming that a handsome and enigmatic dark-haired man had come and healed me. That has got to be good, doesn't it? While my new neurosurgeon is dark-haired and handsome, it wasn't him. 

I'm still finding the latest turn of events hard to believe, particularly the tumour growing back only 6 weeks after it was removed, and I think that it sucks that I have to have yet another GA (I've lost count in the last 2 years), more time in hospital (I've had over 160 days since January 31st, 2013), and that I'm heading for my fourth craniotomy. But I'm doing it to survive. I don't want to die anytime soon. Still too many important and wonderful things to do in this life, and having surgery is necessary in order to achieve it.
Good to know that my neurosurgeon's colleagues and an oncologist saw and discussed my scans and agreed on the proposed surgical plan.

Wise people say that everything is an illusion, that nothing is real... I certainly feel like I've been thrown into an alternate dimension, or that everything I thought was real or existed has been questioned. Trying to perceive it as if I'm swimming in a beautiful tropical pool, though I don't know how i got here, or where it is. The water gets in my eyes and makes it hard to see things clearly, but I feel safe, at peace, and loved by many souls. It's a nuisance that my old life keeps reminding me of unfinished tasks and projects, though I know now that many of them are trivial and unimportant. My dreams will still be there to fulfil after this next round of surgery. MRI 5 pm Friday, admission 7am Monday, Surgery 2 hours later. An overseas holiday would be far more enticing, though I'm so grateful for our health system that makes this kind of treatment easier to access than in other countries. In the USA, some people don't get surgery because they don't have health insurance. Go, Obamacare!.

I've been feeling a sense of dread or foreboding in the past day or so, but it has dissolved tonight when I remembered that I had the same feeling when I was heading to hospital to be induced when David was 10 days past his due date, and when I was told about the first two brain tumours (although they thought they might be breast mets or an abscess at that stage). I pulled through both events perfectly well, and while an emergency caesarean section wasn't what we'd hoped for, David and I both survived the experience. The pathology on the first two tumours was possibly the worst it could have been, but I've defied the odds, and survived 17 months after the first diagnosis, with minimal cognitive and physical side effects. 

My head has been aching a bit more lately, but paracetamol usually helps fix it. The surgeon didn't think I needed to start taking dexamethasone when I saw him last week, the swelling wasn't too bad on the scans. We bumped into a group of school parents at a cafe at lunch time, and even though most of their faces looked familiar, I couldn't remember their names. It looks like i might have to get used to asking people to remind me of their names. It's been a growing issue over the past year (though I'm only realising it now), and I used to have a remarkably good ability to match names and faces. I could even put names to faces from school photos taken in the 1970s and 80s. It will be interesting to see if that long-term memory for names and faces is affected by my surgery. I found a website that talked about changes after right temporal lobe damage, and it mentioned visual memory, prosody (intonation during speech), a tendency to be long-winded (I love language so much, I've always been prone to possibly overdoing it), and possibly difficulties with pitch and rhythm. I hope not. I want to sing in a choir again, but I want to live and love others most of all.

Time for sleep again now. We have to rise early in order to collect David from his year 7 camp tomorrow, so that we can fly to Melbourne in the afternoon. I've booked a motel on Sydney Road in Coburg, which will be fairly convenient in many ways. It has a pool (the weather will be hot), it's close to trams and trains, and a multitude of eating options. I'm hoping we'll be able to see lots of friends and family before my craniotomy on Monday morning. Love and light to all of you, and thanks for the love, prayers and positive energy that you are sending my way.

Home again

The post office clock has just chimed 11 times, and it's good to be home in my own bed. Ben and the boys are asleep, and I'm very tired, but not ready to sleep yet.
Coming home and seeing them all, (as well as our house, garden, and dog again) has made me aware of how disruptive it is for me to have to face surgery again, and how much I have to lose.
I want to hold them all to my heart and keep them there as they flourish and thrive in their own lives. I want to be healthy and happy again. I'm never going to give in to illness, and I have to keep reminding myself that resting and taking care of myself is an important part of healing and surviving.
So I won't write more now. I'll succumb to sleep and look forward to a normal week ahead.

multiple opinions, sweet dreams

Feeling very tired after a busy couple of days in Melbourne. Yesterday, a neuroradiologist reviewed my MRI scans with two neurosurgeons, who agreed that I need to have surgery. I'm scheduled to have a right temporal lobectomy at the Royal Melbourne Private Hospital at 9am on Monday, March 2nd, and will need to be there on friday 27/2/15 to have a preoperative MRI. It appears that the tumour has grown back after the craniotomy 6 weeks ago. At least it's not causing major symptoms, other than fatigue, and some difficulties with concentrating and multitasking (which could also be a result of the last surgery, or related to changing from Keppra to Dilantin for seizure control).

This still feels surreal and I find it hard to believe it is happening, but I'm not worried. I believe everything will go well, and I hope to live many more happy and wonderful years. I've had a wonderful life so far, and there's much more that I want to do with it, including seeing all my friends and family again for many more memorable experiences, and to travel to many beautiful places with Ben and the boys..

I'm going to write a little more before I go to sleep. I need to be at the airport by 10am tomorrow, I'm hoping if I get some things off my chest now, I won't be ruminating when I should be sleeping.

The weather has been lovely in Melbourne again. Quite warm and humid tonight. It reminds me of many nights when visiting or living here, where it was sometimes too hot to sleep. We used to lie on the floor in grandma's house in Albert Park, in an attempt to feel less hot. I used to sleep under a sheet with the window open above my head in Barkly St, Carlton. I was lucky to have one of the upstairs rooms in that terrace house, where it was warmer than downstairs in the winter, but pretty hot in the summer. Not that I minded. It made me think of luxurious adventures and travels in south east asia, and I would fall asleep with memories of sleeping in bamboo huts by beaches in indonesia, Thailand, and Malaysia. I would love to visit those places again. It was magic, and the food was sublime. Pineapples and bananas were smaller and sweeter than in Australia, and I tasted lychees, rambutan, longans, and mangosteen for the very first time. A favourite drink in Thailand was lemon and pineapple juice, so refreshing! The same juice here would be too sour with local fruit.

My friend and I stayed in an upstairs room in a place on Monkey Forest Road in Ubud, where we had views of Bali to the north, east, and west (the bathroom was to the south). It was a pleasure to learn how to bathe using the mandi - a tiled tub of water in the corner of the bathroom, with a jug to scoop up water and pour it over oneself. I had some grapefruit body wash from the Body Shop, and the fresh smell and the cool water were more perfect than any means of bathing I've experienced since then. I've heard that Ubud has been overdeveloped since then, with buses and hire cars clogging the roads. Back then (at the end of 1989), there weren't any large tour buses, and it was possible to walk most of the streets without seeing many vehicles at all, apart from motorbikes carrying individuals, couples, or whole families (with small children). We travelled to Lombok by ferry and stayed on Gili Air and Gili Trewangan, spending our days swimming and snorkelling in the clear water. We then explored the area around Kuta in southern Lombok, where we stayed in an A-frame building overlooking the beach. Mice or rats chewed at the mattress while we slept, so we had to ask for a downstairs room the next day. There was a small cafe next door that served fantastic food - bananas, pineapple, papaya and pancakes for breakfast, freshly caught fish in the evenings. The fish was fried and bathed in a sweet and sour sauce made of tomatoes, pineapple, and some chilli - it tasted so good and we were so hungry, we ate it with our fingers before we were given cutlery. I developed a taste for a local drink that was a mixture of beer and apple cider, it was sweet and refreshing in the constant heat. One day, a storm came over while we were swimming at the beach opposite our accommodation. The water remained flat, and the rain fell in cold pellets around us. It was magical and serene, and I've never forgotten that holiday. I'll remember all the tropical holidays I've had before I sleep this hot Melbourne night, and will devise plans to take my family to places like that. I don't like very hot weather, but I do enjoy warm and humid nights. I want to enjoy swimming in warm tropical waters  and  sheltering in the shade of coconut palms.

I'm glad my brain is still able to access these memories. I could write a book about that holiday, when I was young and thought that anything was possible. I'm older now, and still hope that anything is possible, although I haven't always achieved everything I wanted to - but who does? It's a learning experience to be frustrated in achieving one's wishes, and I'm a stronger person for it.

Sweet dreams, wherever you are. 

New scans for February (written 1/2/15)

Leaving Melbourne, 8846 steps and 6.4km of walking in one day ( thanks to fit bit Xmas present from myself). Feeling uncomfortable after seeing neurooncologist. He was candid without being condescending, but isn't sure if I should have radiotherapy again, and he recommends Avastin as the next line of treatment. I should be able to have it in launceston, but it's administered IV every couple of weeks, which will limit our ability to take the long holiday I'd like to have. We'll have to settle for multiple short holidays instead, I hope the school terms line up for us. I want to take the kids around Australia this year. Would have preferred Singapore, Malaysia, Thailand (NOT PHUKET), Burma, Ladakh, and Europe, but we'll have to wait for that. I should be back in Melbourne for a meeting in a couple of weeks.

11/2/15

11 February, 2015 Feeling a little miserable after seeing my second neurooncologist. It turns out that I've been very unwell the last couple of years, and although I've done my best to stay healthy, hopeful, optimistic, and to enjoy life, I'm finding it hard to keep my spirits up today. I may have overdone the walking in Melbourne yesterday,as I feel drained of energy today, and I'm hoping that another nap might help me feel better. It takes lots of energy and focus to stay positive in the face of everything I've been through and what may be ahead. I'm not ever going to give up on this marathon, but I wish I could have some time out. I don't know how I can do that with so many other important things to do that give me a sense of purpose and achievement. Be greatful for your health, dear friends, and do everything you can to enhance it. Now I understand why I felt like crying during an acupressure massage last weekend. Onwards and upwards!

The neurosurgical second opinion

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. 

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

Waiting to see another neurosurgeon (written 18 Feb 2015)

I'm writing at 1020pm on Wednesday February 18th after travelling to Melbourne to see visit to a new neurosurgeon for a second opinion tomorrow. I've been awake since 3am, so I'm feeling extremely tired, but I feel compelled to write, and able to do so because I'm sleeping in a room on my own at a friend's house.

I have no idea what tomorrow will bring. I haven't heard anything about the results of yesterday's MRI, and I don't want to see the images until I'm sitting with the neurosurgeon who can interpret them for me and give me advice on what to do next.

I had a miserable day yesterday, when my attempts to share some of the things I've learnt about life with a close family member were interpreted as complaining about another family member. It may have been the stress of anticipating the scan, or everything that we've been through, but I became quite distraught, as I felt I was being criticised for what I'd been saying, when I'd been trying to help share knowledge and insights that I wish I'd known when I was younger.

A day of misery helped me develop some insights into myself:  I realised that I sometimes perceive raised voices, frustration, criticism, or irritation directed at me as a sign that the person doesn't care about me (not a rational response, but an automatic one, and something I'll have to work on rewiring).

Also, there have been a number of times in my life when I have felt particularly unhappy, and each one was associated with a sense of social isolation and reduced sense of purpose.
1. The first of these was when I travelled from Tasmania to Melbourne to begin my undergraduate studies in 1986. I only knew one person at the residential college where I stayed, and I felt unsure of my identity being so far from family and familiar people. It was liberating to be away from people who'd known me before, but it was a strange, male-dominated environment where several senior guys enjoyed inventing multiple versions of my surname as a nickname (cries of BargainHunter! BagelHeater! BeagleBunter! would greet me as I crossed the quadrangle or entered the dining hall some mornings). I felt like Melbourne was a big black hole, and that I was being sucked to the bottom of it. Thankfully, a kind medical student listened to me when I wandered the corridors in distress one night, and I  was able to attack my studies with a sense of purpose.

2. The second unhappy time was in 1992, the year I began full-time PhD studies, and the year after I completed my coursework and placements in clinical neuropsychology. The cohort of students who I'd known over the previous 2 to 6 years had moved on to work or study elsewhere, and I felt lost without them, and I wondered if I was doing the right thing by doing a PhD. I hoped it would give me more practical experience (through testing clinical subjects and healthy controls for my research), and thus make me a better clinician. I chose a pragmatic but dry experimental topic that allowed me easy access to people undergoing rehabilitation for alcohol dependence, but I wasn't passionate about it at all. I cured my malaise by flying to Singapore to visit an old school friend and her husband, and then backpacked up the east coast of Malaysia by myself for 3 weeks. It was a fantastic holiday, and I returned to Melbourne feeling recharged and invigorated.

3. 1995 - moved out of Barkly St  to Waterdale Road, living alone, missing Deb

4. 1998 - moved into Eltham - less able to see friends  than before

5. 2002 - after David was born. No friends in Eltham, no luck with mother's group, had to drive to SVH or elsewhere to see friends

6. 2005 - after Percy's stroke. Trying to work, mother, and help Hannah

7. 2013 - socially isolated, particularly when unable to drive after brain surgery.

Note: particular difficulties of not driving for mothers (social isolation, limits after school activities, grocery shopping). Stress of memory/attentional issues on relationship. Lack of patience/tolerance or frustration from spouse.

New scans (written 3rd February, 2015)

3/2/15
I had a CT brain scan last week, in order to check for postoperative air in my head,which might prevent me from flying to Melbourne to see the neuro-oncologist. The CT scanner isn't as noisy and doesn't vibrate as much as the MRI machine ( which makes a noise like a slow jackhammer or industrial pounder, and shakes around as much as a truck on a heavily corrugated gravel road). The head cushion on the MRI is very comfortable foam, but the CT headrest felt uncomfortable, as if there was a metal band across the middle of it. I asked the radiographer about this, and she said there are actually some metal clips in my skull, probably a remnant from my left occipital craniotomy in 2013. If the surgeon used clips or staples to secure the skull sections after surgery in 2013,  I suspect that explains why my head had been feeling a little lumpy and tender to touch before the last surgery.

Good news from the CT scan is that there was no air in the skull, so I should be able to fly. And despite finding it hard to concentrate over the last month, I have evidence that I'm not an airhead (a very bad joke, but it helps to laugh about something)

I'm less happy about the report mentioning residual tumour in my right parietal and temporal lobes, and associated oedema. Our GP is going to contact the neurosurgeon tomorrow, and I will too. My initial reaction to reading the CT report was an angry expletive, and it's been difficult to keep myself from worrying about it over the weekend. I was told the MRI on the day after surgery showed no residual tumour, so the enhancement on this more recent CT could be residual tumour, or something else. Oedema might be there because I've been weaned off the steroids (it's not good to be on dexamethasone for too long, look it up). I'm worried that the "residual tumour" might be tumour regrowth, but I'll file that possibility in a box until I've had an MRI which will give a better idea. (more angry expletives arising from my mind)

The boys go back to school tomorrow, David is starting high school, so today was spent labeling new clothes and school books. I slept for a few hours this afternoon, after helping Ben and David put some slow dripping irrigation pipe around the date palms in the front yard. The heat and bending over made me feel quite unwell, so it was good to sleep. We had hard-boiled eggs for lunch, and Ben and the boys kept themselves busy while I slept. I kept getting woken this morning during dreams involving blueberries covered in chocolate. David woke me this afternoon asking about dinner, and was perplexed when I told him I'd fried some potatoes and covered them in chocolate. I was sure that I had, and he was sure that I'd been sleeping. I hope that he'll learn the folly of waking me when I'm sleeping deeply- it makes me grumpy ( though this dream was funny). We had sausages and salad for dinner, followed by mango, kiwi fruit, and passionfruit. I was cooking better things last week, but the new supermarket we visited last weekend sold us meat that was marked "best before 26/1/15" and that was the date I bought it. I won't be going back there again, it's a darned nuisance and waste to find expired meat when you're about to cook it.

It's generally been a good weekend, but I'm wondering about the effects of my right temporal lobe oedema on my mood, both before and after the surgery. Before the surgery, I had a handful of very disturbing episodes where I felt that life wasn't worth living any more (even though I do not want to die and I want to live many more years from now), and when I was troubled by the desire to cut off my left hand- something so bizarre I just don't and didn't understand it. I was upset about something at the time, but I had no desire to carry through with the action, or to talk about it. I wonder if it was some strange activation of my limbic system, some misfiring of my hippocampal-amygdaloid complex in response to emotional triggers, and in the context of the tumour and related oedema.  I'm relieved to report that it's only happened a couple of times, once before surgery, once after surgery, and that it hasn't happened since, and that I have no plans or desire to hurt myself. It has made me wary of getting overwhelmed or upset, as it's disturbing to find such impulses arising in response to emotionally laden situations. 

I used to work in an epilepsy program in Melbourne, so I'll ask one of my old colleagues about my experiences. I know that Keppra, the anticonvulsant that I'm taking, can cause mood disturbance or lability, but I don't think my experience fits with what I remember about Keppra-related symptoms. I'm glad to have a bottle of clonazepam around to use if I start to feel overwrought, even though I'd prefer to get off the emotional roller coaster myself, rather than resorting to medications.  I'm quite fond of my left hand, I have no idea why I would want to hurt it. I understand now why it's so difficult for people to report thoughts of self-harm to others, it feels crazy, but I know that I'm not crazy. It was just a momentary and disturbing impulse to hurt myself that I wanted to go away, and which I dealt with by removing myself from the situation, and doing something pleasant and constructive like gardening or tidying the house (pleasant because of the sense of accomplishment and getting a tidy house or garden - what an exciting life I lead!).

I wondered in an earlier post if I'd been getting depressed, but in hindsight, I think the symptoms were related to the growth of the tumour, and it provides a good illustration of the need to rule out organic factors before diagnosing mood disorder. The mood symptoms lifted after I had surgery, suggesting that the tumour and associated oedema were contributing to the sense of lowered mood, and energy, and also to my irritability, anhedonia, pessimism, worry a out the future,  guilt, ruminations, and self-doubt.

Tomorrow, the plan is to take the boys to school with Ben for their first day, meet Nathaniel's year 4 teacher, maybe have coffee with one of the mums, do some walking, and come home to call the neurosurgeon about the CT scan and hopefully schedule another MRI. I'm hoping the CT scan is nothing to worry about, and that there's no new surgery on the radar. At least, if there is, it doesn't sound like the recurrence would be inoperable. There's always radiotherapy if it was...

There's much that I want to do in the next 43 years until I reach 100, including lots of travel, and spending time with friends and family around Australia and overseas. I refuse to let any form of cancer get the better of me, and I'm confident that I'll be able to regain my fitness and energy in the next few weeks, so that I'll be able to contribute meaningfully to society and my loved ones in some way.

I've discovered that i feel good when I've had deep sleep, exercise, interacted with people outside the family, or achieved things around the house, so I'm going to start scheduling and logging my activities to make sure I do these things, and to keep track of my progress.

Wishing you all a happy February, and a stress-free return to school/work/uni, or whatever it is you do in February. 

Despite the ups and downs, I'm feeling well and getting by okay. Some people seem to have the impression that I'm very unwell, but I'm not. I've experienced a couple of things that have made me unwell, but I'm doing fine at the moment, and people always comment on how well I'm looking.

Remember this with anyone you know who may have been affected by health problems of their own. 

We need to give each one of them a chance to say hello and to interact with us, and not assume that they're very unwell even if they have a particular illness. People have an amazing capacity to thrive and enjoy life, or at least get by, despite serious illnesses or disability, and we need to see or talk to them and interact with them to give them the opportunity to enjoy the important energy generated by contact with others. 

Sending positive energy and good wishes to you and  your loved ones.

Strange experience after first craniotomy

I'm not sure if I've written about this before, but I've spoken to a few people about it, and they all say I should write about it as well.

After my first craniotomy in September 2013, I was having trouble sleeping because of the dexamethasone I was having to reduce swelling in my brain. I was offered a benzodiazepine (Temazepam) to help me sleep, but I tended to decline the offer, because it felt like it was cheating to not go to sleep on my own. I desperately needed and wanted to sleep, but just couldn't. I think I blogged about the sleepless nights, but I don't think I wrote about this experience because I worried what people might think.
One night, while my body was asleep and my brain was still ticking away, I sensed a divine golden light that connected all living things across time and space. The light was love, and I sensed that it came from the creator of all things. The creator and the light were one. They were without gender or religion or denomination. The light had created, and was infused in everything. I was actually aware that time and space and distance were all illusions, constructed by our minds because we find it hard to comprehend that time and space do not exist as singular entities. I perceived that every point in time and space exists concurrently, at the same time; that every soul is eternal, and has existed, and will continue to exist, thoughout eternity; there is no endpoint in time and space, it is infinite, and the divine golden light sends beautiful tendrils throughout time and space, and connects all of us.

I would try to visualise the golden light whenever I had radiotherapy after my first two brain tumours were removed. I hoped that it would help to cure me. I'm reaching out for it again as I prepare for another MRI scan, 47 days after the New Year's Eve scan that showed a new tumour growing in my right temporal lobe. I'm seeing a young neurosurgeon in Melbourne on Thursday. He has specialised in brain tumours, and I'm feeling hopeful that I might be able to have a reassuring conversation with him.

I've been reading various articles about spirituality on the web lately, and haven't seen anything like the experience I had. One friend laughingly suggested it was all due to the Dex playing tricks on my mind. I wondered if the sleep deprivation had also contributedit felt like the most real experience I'd ever had, and I was so grateful for it, I'd been so afraid of dying during surgery, or due to the tumour after I saw the pathology report.
I have searched the Internet once or twice for golden light. The most interesting discovery was theSutra of the golden light. I will search again tonight, then bathe myself in it before I sleep.

Wishing golden light, healing, and love to all of you and your loved ones

Another second opinion (written Valentines day, 2015)

Feeling mournful. I've had a wonderful life, and I don't want it to end. I hope the new MRI scans on Tuesday and seeing the new neurosurgeon in Melbourne on Wednesday or Thursday gives me a renewed sense of hope. I haven't given up hope that I'll survive this, but the neurosurgeon in Hobart said he hadn't been able to completely debulk the tumour because it was in my lateral ventricle, and he hadn't wanted to cause me any impairment. He said it was up to the oncologists to treat it with chemo and radiotherapy, and thought that maybe I could have a lower dose of Temodal than before, given that I had a bad reaction to it last time.

The oncologist in Melbourne said such bad reactions to Temodal are rare, but they do happen, making people very seriously ill (his last one ended up in ICU), and that he didn't think I should have it again.

 He said that the issue of radiotherapy was a technical one. We already knew that I couldn't have radiation again if it was in an area previously irradiated. My radiation oncologist will look into it, but one problem with the new tumour is its proximity to the top of the brainstem,  which they don't like to irradiate. So I'll see a different neurosurgeon next week, in Melbourne) to see if there's anything on the scans that can be safely removed. If there is, I want it out. If there isn't, I'll be starting Avastin, one infusion every 2weeks for 12 weeks, as far as I know. I'm determined to take our little family on lots of short holidays over that time, I just hope I can get over the tired feeling that's been affecting me each day since we started changing my anticonvulsant from Keppra (which can cause unpleasant thoughts and other side effects like panic symptoms) to Epilum (sodium valproate, which can be sedating). I'm going to push through the fatigue and do something in the garden, it usually seems to help lift my spirits

scan results and bizarre dreams

My neurosurgeon has looked at my recent CT results and compared them to the postop MRI scans. He told my GP that he's not convinced that there's any change between the scans, or that there's any more residual tumour on the CT compared to the MRI images. He suggested I start taking steroids again if I'm troubled by headaches, but I'm not going to do that yet, as I'm getting by on paracetamol once or twice a day. I'll see if I can talk to him tomorrow though, because I've been having some very weird dreams, and bizarre thoughts involving my left hand _ I wonder if the oedema is contributing?

I woke this morning after dreaming that I was trying to teach the boys long multiplication (176x 52, don't ask me why - at least I was getting it right), and last night I had words running through my mind that were in the wrong order, as if someone had printed out sentences and cut up the words and jumbled them up.  The meaning was apparent, but it was a little like listening to Yoda from Star Wars. (e.g.    Listening meaning it was like apparent Yoda Star Wars was a little Star Wars)

It was like a kind of subvocal word salad - I was worried that I was having a stroke, so I asked Ben if I was talking normally, and he said I was. I slept reasonably well, and today was okay. I went with Ben on the school drop-off and had breakfast with one of the other mums, who brought me home afterwards. I did a little in the garden, but not much in the house, and slept over lunch time because I was exhausted from being out in the morning.

I had a sense of tightness in my chest this morning, and anxiety without any thought associated with it. It was strange and concerning to feel a physical sense of anxiety or mild panic, and I found it hard to clear my mind, or to relieve it with breathing exercises. I started to feel angry at the unfairness of life, but realised that no-one said life has to be fair, and that we just have to make the best of the cards that life deals us, and hope that better ones come along. That's a clunky analogy, I know, but it helped at the time, as did going back to sleep.

It's time for sleep now, I'm going to think of the jacarandas growing happily near our little dog's grave outside the front porch. Someone told me that jacarandas don't do well in launceston, but these two are flourishing on either side of a small weeping Japanese maple with dainty leaves, and I love their rich, green, dense but dainty foliage. Can't wait to see them flowering in a year or two.

Wishing everyone wonderful dreams and reality.

New tshirt

This anonymous gift arrived in the mail today. Thanks to whoever ordered it and had it sent from a company called zazzle in the USA. (Sheldon cooper would approve of the name). It will give me something better than pink to wear if I do the cancer council's 5km walk/run in March. I'm having a great day, and feel very zazzy in my new tshirt! :)