Nearly 3 weeks on after tumour #3

1013pm and feeling tired after sleeping nearly all day. My body has that drained feeling it used to get when I had the flu. I didn't sleep very well last night - had some sinus congestion, and woke up with a whopping headache. Panadol and Endone didn't make much difference by 10am, so i tried a decongestant (Sudafed) and 0.5mg of Dexamethasone (which I'd ceased taking yesterday according to the weaning schedule given by the surgeon).

My head isn't feeling so bad tonight, and I feel optimistic that I'll sleep better tonight than last night.

We had a good weekend - I woke up feeling more rested than recently on both Saturday and Sunday, and although I felt a little grumpy, I discovered that feeling grumpy gives me enough energy to feel able to tackle some of the clutter piles that have been waiting for my attention. Getting even a little clutter sorted was a very satisfying experience. 

We bought a fold-down wall-mounted clothesline on Saturday, and Ben and David mounted it to the laundry wall, along with the optional awning, so we now have somewhere convenient and undercover to hang out the washing, rather than the clothes horse that we've been using the last 6 years. There is a removable rotary clothes line in the top garden, but it doesn't rotate properly because it hits some shrubs. We only use it rarely because it's a long way from the laundry, getting to it involves watching out for Ginny's deposits on the lawn, and there is a thick carpet of periwinkles and some blackberries growing under it. So I'm excited about having 24 m of line just outside the back door in a sunny spot, and the prospect of removing the old line, ripping out the periwinkle and blackberry, and converting that patch to a new vegetable garden. It will also give us somewhere to plant the mulberry tree (bliss on a tree!)

I'm wondering if I was getting a little depressed about my GBM diagnosis in the last months of last year. In hindsight, I realise I was beginning to doubt if life was worth living, I was feeling pessimistic about the future, and I was feeling increasingly guilty and self-punitive about perceived failures to uphold the excessively high and obsessional standards I set for myself. I was worried that my children would not have good memories of me if I were to die in the next few years, and although I could understand that I had every right to be angry, irritable, grumpy, distracted, or sad about the crappy luck I've had with health over the past 2 years, I didn't want to make excuses for myself, and wanted to rise out of the quagmire of fear and self-criticism that sometimes bogged me down.

Having had this third tumour has helped me develop a new way of looking at things, and to be mindful and appreciative of the way I've dealt with it.

I've realised that I generally have a very optimistic, appreciative, and positive way of looking at current and future events, and that I need to hold onto the bright, white light that this brings me, and to hold onto the hope and faith that things will always be better in the future.Things are pretty good now, and could be far worse, and there is much to look forward to. I've been blessed with loving friends and family, and with living in a country and an age where health, education, welfare, and opportunities for a fair society are much better than they have been at many times in the past, or in other countries. Filling my heart with gratitude and joy for all the good things in life is helping me keep away from the swampy ground of fear and worry, and I'm hopeful that this year will be the start of many more years of good health to come.

I've also decided to view my GBMs as individual brain tumours, and not to think of them in the context of cancer. Before I had breast cancer and then the first two GBMs, I used to think of brain tumours as being isolated things that grew in the brain, of varying levels of malignancy. I knew the malignant or highly aggressive ones could come back and had poor prognoses, but I didn't realise that they could be multifocal (like my GBMs), and I didn't know that chemotherapy was available for them - I thought they were treated with surgery (remove the tumour) and sometimes radiotherapy. So I didn't really think of brain tumours as being a form of cancer, which was very helpful in dealing with them when I first had them.

Now that I know more about cancer gives me a wider range of options for reducing my risk of recurrence - eliminating sugar from my diet, boosting the health of my immune system, making my body more alkaline, less acidic, and better oxygenated and hydrated will make it a less hospitable place for cancer. Along with the many other dietary and natural supplements that are available, plus exercise, mediation, and other lifestyle factors.

So I'm going to think of my brain tumours as being analogous to thistles in my garden. I need to keep a watchful eye for new plants, and to remove them when they grow. If they're left too long, they can ruin the garden. There are possibly  a number of seeds lying dormant, under the soil, waiting to germinate, so I need to make the growing conditions inhospitable for new growth, and to continue to keep a watchful eye for any changes. I hope I'll be able to keep the garden clear of thistles forever, now that this last one has been removed. I will seek second opinions from other neurosurgeons and radiologists to ensure that all potential seedlings are benign. 

Must sleep again now, I think it will be a good night for sleeping.

plans for a sunny summer saturday

952 am on Saturday - I didn't sleep well last night, too hot between two boys who fell asleep in my bed while we watched Gravity on the laptop, too cold from the window we'd opened to make it less stuffy in the room overnight. I'm feeling sleepy and very hungry, and want to get to the weekly harvest market in Launceston to pick up some fresh berries and almond croissants (for David) before they sell out. I can always sleep later. The market is lovely on a day like this, and we always seem to bump into a few people we know, which is a lovely way to start the day.

I spoke to my neurosurgeon yesterday - he said I'lll need to have a CT scan in before flying anywhere - he said that airlines are increasingly requiring CT scans for his patients before flying, to exclude the possibility of air in the skull. I guess the pressure changes during flight could cause one hell of a headache, or maybe other things, which I don't want to know about. So I won't be able to book a last minute trip to visit Caroline and her family in Queensland for the last week of the school holidays (School resumes on February 2nd), well, not until I've got that CT scan. Ben's grumbling about not wanting to expose my brain to any more radiation than necessary, but I thought the radiation from a CT scan was minimal, and similar to that experienced during air travel anyway. Besides, I need to go to Melbourne to see the neuro-oncologist in February, so I'll need the scans for that trip anyway. Yes, we could take the ferry from Devonport to Melbourne, but I'd rather fly there in 1 hour than go through the tedium of the ferry journey (1.5 hours driving, up to 2 hours queuing before a 12-hour journey, then up to 2 hours to disembark, often after an awful sleepless night being tossed around in narrow bunk beds on one of the world's roughest stretches of water).

Ok. Ben's out of the shower, I'm going to follow him through, get dressed, and get us all out of the house before it gets any later. Time to grab an opportunity for a normal morning. I'm going to act as if I won't need to be back in bed again today before this evening, and see where the day takes me.

Looking forward to pretending that this is a normal day, that my life is normal, and that it always has been. I've been taking a careful approach for a bit too long now. I feel like being a little reckless again (wicked chuckle)

17 days after surgery

It's Friday the 23rd of January. 17 days since the right temporal lobe tumour was removed. My staples were taken out last week (not too uncomfortable), the wound has healed well, but it's not comfortable to lie on the right side of my head. I've been getting by okay with one Endone and one panadol every8-10 hours for pain relief, and have been managing a decent 10-20 minute walk each day, though I feel a little unsteady on my feet, and nearly took a tumble in a gutter yesterday while walking with the boys.
I think I'm sleeping ok at night - the Dexamethasone doesn't seem to be disturbing my sleep as much as it did after the first two surgeries in 2013, but I seem to be sleeping a lot of the time during the day. Like now - 1152 am, and I feel like lying down and sleeping, only I'm waiting for my neurosurgeon to call me back from his spinal clinic - I want to ask him if this amount of fatigue is normal, and if I can take the boys to Queensland for the last couple of weeks of the holidays. My cousin has asked if we'd like to visit. The thought of family, puppies, swimming pool, someone else's cooking, and warm weather is very enticing.

I'm trying to stay hydrated, because I'm feeling dizzy a few times a day, and quite often have a strange sense that my body is moving even though I'm sitting or standing still - I'm not sure that it's true vertigo, but it's very disconcerting. Many things seem strangely unfamiliar - from television shows to webpages that I've visited before, not that I'm watching much tv or reading much on the web. Things just seem not quite right - familiar, but not as I remember them. I've often read of people having a sense of deja vu before seizures, and sometimes a sense of jamais vu ("never seen"), but I haven't had any seizures since the last surgery, nor any symptoms of auras, only this niggling sense that things aren't quite right, that I'm not sure what day, or time of day it is, and a day when Nathaniel insisted that I had gone upstairs to buy a new computer game for him, but I have no recollection of it at all.

When we started to do pre- and post-operative neuropsych assessments on epilepsy patients at St Vincent's in the mid 1990's, we decided to do them 6 months after surgery, based on patient reports that it took them at least that long to get over the fatigue and headaches. I think we might have also found some research evidence backing up the need for 6 months to recover. My nursing friends tell me that it takes 3 months to recover from every hour of general anaesthesia, and that 6 months to recover from a 2-hour brain operation is in the ball park.

Six months seems like an awfully long time when I'm the patient. I'm not enjoying the fatigue, the sense of being easily overwhelmed by excessive noise or drivel on the television, and the effort it takes to maintain my concentration.

I wonder if rehabilitation services are routinely offered to patients after brain surgery by any public or private services in Australia or elsewhere? We accept that rehabilitation is needed after stroke and acquired brain injury, but I'm not aware of it being offered after surgery for brain tumours. I had to refer myself for outpatient rehab after my two surgeries in 2013. I've been very lucky that none of my tumours have caused me major focal cognitive or motor deficits, but I'm wondering if a spot of allied health input might help me get through this recovery phase. I can probably do a little of my own rehab, but I found the team input very helpful last time, and it was good to have others to refer to help me structure my time and set achievable goals.

Must go print out the booklists for the coming school year, need to drop them off today when we get David's new blazer. The boys are due to start back at school on February 2nd

The wonderful optimism of being alive.

1230am, Saturday 16th January. Went to bed around 9pm, woke with a headache. Just took another Panadol Oteo (prolonged release paracetmol) and an Endone (an opiate), 6 hours after I'd taken the last ones. The pain has been pretty manageable on these tablets if I take them every 6 to 8 hours. It is uncomfortable to sleep with the right side of my head down, so I don't. I'm getting a little sick of sleeping on my left side to keep the pressure off the right side of my head, but I've been managing to sleep on my back most of the time.
Fatigue isn't a big issue this time around. Having had two prior craniotomies, I know I need to sleep when I can and to keep physcially active. That means I've been sleeping when I can during the day, and trying get some kind of a walk in a couple of times a day. I did 12 minutes on the treadmill at a comfortable 4.5km/hr with a 5degree incline this evening, I'll see if I can increase that interval to 36 minutes twice tomorrow. It felt safer and more steady to be walking on the treadmill, with the handles available if I needed support, and without the risk of falling or being unsteady that has bothered me since before I had surgery. I was getting my core stregnth back before the last operation on January 6th, but I was increasingly worried about falling over in the weeks before the scan on January 2nd, and I've been feeling a little unsteady since.
I need to remember  to load up on at least a couple of glasses of water each time I have a drink, I suspect I'm a little dehydrated, but I know I tend to avoid drinking much in the evenings because I hate waking with a full bladder. This is also affecting how much I drink during the day, since I'm napping so much, so I need to take 2-3 glasses of water each time I have my medications or herbal supplements. Sounds like a boring new years' resolution, but it can't do any harm. I don't need to get constipated again, and they say that drinking enough water helps the body to flush away toxins. I have no idea why I've had a third brain tumour, or why I got brain tumours on top of having breast cancer. My whole medical history since January 2013 seems like an insult on an otherwise good life, but reflection teaches me that I didn't do things as well as I'd like to pretend, and that a little bit of reform will not do any harm.

I've realised that I inherited a wonderful sense of optimism and an ability to take pleasure in the simple pleasures of life from my parents and their families. Growing up in Tasmania was an endless lifetime of drives to visit loving aunts, uncles, and cousins, who welcomed us with great varieties and quantities of delicious foods. Every visit involved home-grown or home-cooked food which was generously provided to two little girls, whose father didn't make them restrain their indulgence in the wonderful scones, cream-cakes, or chocolates that were offered. We were part of the generation who were taught to eat everything on our plates, and were praised for eating well. In hindsight, I often ate beyond the point of satiation, and wasn't very good at knowing when I'd had enough to eat. This means that I ate excessively as a child, and came from a family that scoffed at the idea that too much sugary food was bad for you. Lucky for us that diabetes has never been a problem in the family, but my readings on diet and cancer suggest that everyone should find health benefits in following a diet low in sugars and refined foods. I won't go into the LCHF way of eating here, I think I've covered it before, but I'm redirecting my efforts into following it after the most recent brain surgery.

So, as a quick status update - I've been home since monday the 14th of January, sleeping most of the day each day, but managing to get at least a short walk in each day, and to cook a range of simple, healthy, and tasty meals.  The tumour was found on the 2nd, we drove to Hobart on the 6th, it was removed on the 7th, the postoperative MRI on the 8th showed no residual tumour in the operative bed, and no preoperative infarct (blood), so the surgeon was happy with his work. The histopathology  came back on the 9th, and showed another GBM, but the surgeon felt that the Gliolan fluorescing dye didn't dramatically increase the amount of tumour removed when compared with what the scans showed and that he could see with the naked eye. This suggests to me that the tumour was fairly encapsulated and not invading surrounding brain tissue, which has got to be a good thing.

We saw the radiation oncologist on the 15th, he will consult with a near-oncologist in Melbourne about the best course of action for my radiological treatment for the most recent tumour. Going on past experience, this means my radiation will start in about 6 weeks after the surgery, as they like to give the brain and bones time to heal. My previous bad response to the chemotherapy drug used for GBMs, which resulted in neutropenia, thrombocytopenia, and then pancytopenia which lasted for several weeks even on daily injections of GCSF, means that I may not get the chemotherapy again.

This makes me sigh.

As I said before, I feel like one of Dad's dear aunts, genteel and elegant women who presented a veneer of politeness and grace, who would have been discretely flustered or out off by the display of impolite or churlish behaviour by others. My ongoing health dramas are unexpected and somehow  improper in the mental template I had for my life. I wasn't supposed to go through all this, but I'm glad to have discovered the source of endless optimism and enjoyment of life that has fuelled me until now. Time to embrace it in some dreams, and write a little more in the morning.

Going Home today?

Monday 12th January, 845am
Siting out of bed, hoping that we'll be driving home later today.
we had lunch with friends down in Blackman's Bay yesterday - their house was on a ridge overlooking the broad expanse of water, and the experience of being able to sit in a sunny dining room overlooking the Derwent River was wonderful. The vastness of the sky and the blue water made me feel like my soul was expanding, as did the joy of eating simple, home-cooked food and finishing up with some indulgent triple-cream brie. It was the first time I've felt full after a meal in recent weeks - the steroids aren't making me ravenously hungry like they did in 2013, but I felt nurtured and well.
I had a good sleep when I returned, and slept mostly well last night. I could probably sleep a little more now, but I haven't used up the internet access that I purchased, and I don't want to waste it.
Yesterday gave me a wonderful epiphany: I realised that I was blessed to inherit or acquire a strong sense of optimism from my father, or extended family, and that this tendency to be able to look forward to pleasant events and opportunities in the future has been a wonderful resource for me over the past few years. Yesterday's visual and gastronomic pleasures made me aware of the hedonistic basis of much of my optimism, and I was reminded of many times when enjoying food and company were intrinsic to the sense of pleasure we had as a little family unit. Dad always seemed to be taking us to aunts, uncles, and cousins who had well-stocked larders and kitchens filled with fresh fruits, jams, and biscuits, which made visiting these loving and indulgent people a wonderful and delicious adventure nearly every time. My epiphany yesterday made me realise how growing up in that environment made me feel so cherished and optimistic that there would always be good things around the corner for us.

I'm a little cross that I've gone and grown a new brain tumour, but I hope that this is just a hiccup in my recovery, and that I'll recover well after this one. I'm determined to stay fit and active this time, and hope that my recuperation will be better with the benefit of the lessons learned from the first two tumours.

I want to write a lot this time, but I need to sleep now, before Ben and the boys come to take me away from this place. I would like to be mostly awake on the trip home.

More words from me when I'm home again.

Funny dreams and not so funny pathology

254am Saturday

New body art and hairstyle, taken while fantasising that they'd removed a small cauliflower from my brain. Sadly, that wasn't to be the case, the pathology report was the same as before. 

I've been repeatedly woken by dreams in which I'm trying to cheer myself and other people up about the new GBM, and in which my surgeon keeps running away when I ask about the possible left temporal neningioma, the one that he thought was nothing to worry about. 

I'm going to pester him about it tomorrow. I'm sure his job is difficult, and that brain conditions like mine are very depressing, but I don't want to hold onto something that could be benign without him taking a little biopsy to be sure. 

It's kind of nice that he said he thinks I'm brave, not that I feel brave, I'm just doing the best I can and trying not to get overwhelmed by fear or probabilities. Staying strong and determined to fight this thing is the best I can do in the circumstances. 

Despite the admirable persistence of my dreaming mind in keeping positive and pursuing answers to my questions, I need more sleep so I can do it when I see him tomorrow. Trying to sleep again now, with instructions to self to relax and trust that all is well. It's tiring to have to create a standup comedy routine in my dreams every night. But it also makes me laugh when I wake up and realise what I've been doing. Some of my dream comedy is totally surreal and bizarre, and I never knew my dream self was so agile and graceful, or that I coiid dance better than Michael Jackson! Very amusing to remember. Thanks mind of mine, you're doing a greet job. Hugs and love to everyone I've ever met, even the ones who were jerks at school and Uni, you made me stronger than you'll ever know

Facebook progress notes

Monday 5th January
The surgeon looked at my scans this morning and his rooms rang at midday to ask me what time we could get to Hobart. We arrived after five, and I was admitted straight away. The surgical wards are full after the holidays, so I'm relaxing in ICU, waiting to see the anesthetist. Feeling great, a little tired, happy to have seen Dionne after 30 years. Don't be alarmed by the ICU thing, I think it's just a bed allocation issue. I'm feeling great, thanks to the 4mg of steroids I've been taking each day since Friday. My presurgical MRI is booked for 7am, and surgery for 830. Thanks to all you darling people for your concern and support. Love, hugs and light to everyone.

Tuesday 6th January
1240 am. Looks like it's going to be a long night. I said a full cycle of over 24 different mantras before a wonderfully cheerful and competent ICU nurse called Matt expertly needled my infusaport, getting it right and perfectly sterile, the first time.. He took some bloods for tomorrow, and has me on a slow 10ml drip overnight. I've slept a little, but the aircon is noisy and gentle alarms keep sounding. And they'll be waking me at 5 to give me the gliolan to drink, so that the tumour cells will light up bright pink under a fluorescent light during surgery tomorrow morning. The surgeon is still as wonderful as he was last year. He has a gentle and reassuring seriousness about him. Good news is that he doesn't think we need to worry about the possible neningioma on the left temporal lobe, but I'll interrogate him about that after tomorrow. Time to close my eyes again for 4 hours.this all feels very surreal. I'm strengthened by the love and support of you wonderful people. Eternal love and gratitude and blessings to all of you.420 am. I've slept 2-3 hours since my last update, and just talked for an hour with my nurse when I accidentally pressed the call button rather than turning the telly on, as I intended. Talking to him was far better. He used to be a neuroscience nurse in NZ, and has been an ICU nurse for over 20 years, so he had lots of fascinating stories to share about various brain disorders. We had a very animated conversation, and I feel like he was the perfect nurse for me to have tonight. Talking about the many, varied, bizarre, and sad presentations of brain disorders makes me so glad that I found neuropsychology for my career, though it's been more of a passion and vocation, and I'm looking forward to being able to contribute to professional and public understanding of brain conditions in a meaningful and helpful way once this surgery is over. I'm feeling exhilarated, like I've just caught a great wave and body-surfed it in to the shore. I trust that the surgery will go well, and that I'll body-surf with my body and mind many times in the future. When it's all over, I want to be laid to rest in the cemetary on the hillside in Lilydale, with many other bardenhagens. But that won't be for many years yet, I want to live to 102 like my great aunty Olive, who lived at home until the end, and who saw a hand coming through her window one night. She whacked the would-be burglar on the knuckles with her walking stick, and told him to get out of it!
I'm feeling so energised and enthusiastic about everything, it's a wonderful way to face surgery. And, no, this isn't steroid-induced, I haven't had any since yesterday morning.... Okay, maybe there is still a little in my system, but I truly feel more happy to be alive than I have since the first time around. I find it hard to believe it's just the dex giving me this exhilarating adrenaline rush. I'm so lucky my tumours grew where they did, that they've been detected early, that they've all been operable, and that I have an excellent surgeon. I know I'll be a bit muddle headed and probably fatigued and irritable after surgery, but it's only temporary, I'll get through it again, like I did before.
15 minutes to the Gliolan. 2.5 hour to the MRI, 4 hours to surgery. Maybe 8 hours to my next update. Love, thanks, and blessings to you all.
6am. Clean and gowned after a shower with chlorhexidine presurgical body wash ( the pack says to avoid eye contact, but failed to mention not to talk while rinsing it from hair. Tastes bitter.) have had my morning meds and the Gliolan, it tasted salty this time, I thought it was sweet last time. Right now the synthetic giant scorpion venom will be getting absorbed by my tumour cells, and they will glow a fluorescent pink under the blue light used in surgery, allowing the surgeon to better visualise the tumour and remove more than would have been visible with the naked eye. Time for one more hour of sleep until the MRI. Have a great day!

624 PM. Surgery went well, with "no surprises"
I have a cracking headache, it feels like someone has cut into my skull with a bone saw 

Feeling drowsy, Panadol and endone are helping reduce the pain levels. Time for some green sugar-free jelly, and a nap. Will get to see Ben and the boys again later. Xxx

wednesday 7th January
1123am Ben and the boys are here, I'm so in love with all three of them. The bandage is off my head, the ouchy arterial line is out, and I'll be having another MRI at 245. Time for more sleep. Pain is well-controlled, and all neuro obs are good: pupils equal and reactive to light every time they test it, and my power is good, though I'm not out of bed yet, though the Physio has seen me and I'll be safe to wander when the urinary catheter is out. Xxx
Thursday 8th January
230 am How's this for a title for a book on my experiences? "Saved by music/Beethoven"?
It's impossible to succumb to fear or give up when I have the choral music of beethoven,
Mahler, orff. Brahms, and Vivaldi running through my mind. Particularly the B9, his Missa Solemnis. And Orff's carmina burana. The power and pathos and slow
Sections of those works, and the hours
spent rehearsing and performing them, has prepared me for the different sections of my recent experiences. If Beethoven could
compose such amazing music. I can get through all this.
Time for more sleep. It's been a good night for sleeping,
The endone, panadol.and fentanyl have helped dull the pain. Sweet
Dreams.

Thursday 1142 am
I'm in a single room after a somewhat noisy night in a shared room. The man diagonally opposite me had severe sleep apnoea, poor thing, he must be chronically tired from all that snoring and snorting.. I managed to sleep well though, and now that I'm set up in my new room, I'll be able to write properly and hopefully sleep better. They rescanned my brain yesterday, we were a little concerned about the staples that are still holding my scar together, but they didn't grow hot or fly out in the MRI machine, and the surgeon said he's looked at the scans, which seemed okay, although they hadn't been fully loaded at that stage. We still don't know know what the histopathology report says, and I'm not going to worry about it until I see the surgeon with the report in his hand. 

Must go now, I'm very tired, but feeling good after a shower and change of clothes, and for having amy beautiful boys here with me.

Sleeplessness

Having trouble sleeping tonight. Wednesday seems so far away, yet time is passing quickly. Had a good long talk with a friend in Sydney yesterday, and with a school mum. Feeling blessed to have such supportive family and friends. All will be well, whatever happens. 

If this cancer gets me in the end, I don't want to be described primarily as someone who battled cancer. There's been much more to my story than that. 

I'm going to start writing more for my boys, so that they'll have something to cherish if I get defeated by probabilitiesdown the tracks,  and so we'll have something to share when I don't. 

It might be a little confronting to ask this, but it would be great if friends and family could share their favourite memory/memories of me so I can collate them into a resource for myself in the days ahead, and for the boys to read when I'm old and grey and this is just a distant memory. Please write them to me, not about me. I'm planning to be here for the long haul and don't particularly fancy reading things that sound like an obituary.  (Crap, that sounds awful). If we don't know each other personally, even some words on how my blog has affected you, and a little about yourself, would be lovely.

I hope you're all slumbering peacefully in your beds, unless you're on the other side of the world, where I hope you're having a great day.

Love, blessings, and appreciation to all of you.

The long wait

Last time around, the tumours were discovered on a Wednesday, we drove to Hobart and I was admitted the next day, and the first one was taken out the following day. This time, the scan was on Friday, I won't be able to speak to the surgeon until Monday afternoon, and it looks like surgery might happen on Wednesday. The waiting is agonising.

I'm trying to keep busy, but it's not an entirely efficient strategy to ward off the feelings of panic that started to rise this morning.

Ben gave me some Valium before, I don't think it's made much difference. I feel like smashing something at the moment. Hanging out the washing wasn't as equivalently cathartic as smashing something would be. It's 30 degrees outside and too hot for pruning the roses. 

I'm going to write a brief post now, and have a nap. One of Nathaniel's friends is coming over, but I don't feel like talking to anyone. I'm angry that I had to get brain cancer. If it had only been the breast cancer, I'd be all better by now and would have been back at work for a year.

Now I look around snd see all the possessions we've accumulated, the books, the towels, the linen, the clothes. The beautiful things that have no sentimental attachment for anyone else. 

I wish we'd spent time accumulations experiences and memories, not lovely things that are pleasant to have, but which don't make life more enjoyable.

I'm tempted to sell all the unnecessary stuff and donate the money to charity.

I'm bloody angry that gbm cells can migrate through the csf, which surrounds the brain and the spinal cord. The little bastards can potentially pop up anywhere. I'm going to find an immunotherapy trial so that my immune system can identify and attack the glioma cells, while I still have a brain left to preserve.

I've received lots of well-meaning posts from friends and family on Facebook or email. It's nice to know people are thinking of me. It's less helpful to be told to "stay positive". It takes an incredible amount of energy to do so, unless I just switch into denial mode. It's easier not to dwell in the potential negatives, to keep busy with constructive or pleasant activities. Being told to stay positive isn't consoling in any way. I know people who say it must mean well, but it starts to make me think that people think I haven't been positive enough do far. How much more positive do I need to be? Should I sing and dance and record it to post on YouTube? 

Trala, Tralee, I'm so happy,

 I have an aggressively malignant tumour in my brain, 

I best it once, it's come back again. 

I worked so hard to make it go away, 

but it liked me brain and still wants to play.

I'd rather it didn't, I want it out. 

It makes me went to stamp and shout.

Maybe I'll win, maybe I won't

This thing in my head ought to catch a boat. 

I need to sleep, I need to weep.

Don't tell me what to do or how to feel.

Just tell me you care and that your support is real

Remind me of times when we laughed in the rain

When we drank too much, I won't do that again. 

Be with me now, I'm here and I'm well

Don't think of the future, we never can tell

The weight of predictions that I will beat this thing is heavy to bear. 

Let's not worry about the outcome, let's make the most of the journey, 

The endpoint is unknown, I'd rather focus on enjoying the way, without the burden of possibly impossible expectations 

Do I seem like a grinch? Ungrateful, unkind? 

I am glad for support, it's just hard to know that people are expecting so much of me. I'll do the best that I can, I just need you to sit with me, walk with me, talk with me. Enjoy every moment and not think of the futures. It will look after itself.

Second thoughts on my last post

It's 5am and I'm wondering what I hoped to achieve in my last post. Then I found two beautiful emails from my sister and a dear, precious friend who isn't in Boston. My insides feel all warm and musty from the love, and my eyes are wet from the bewildering mix of gratitude for their concern, and for feeling sad at having felt compelled to share the news. 

I'm sorry that the news isn't all good, but if I hid it from people, I would feel deceitful, and I'm sharing this journey with people in the hope that they will share it with me. 

I'm still very much alive, and I cherish life more than ever before, and it ain't over 'til it's over. (Cue Lenny Kravitz, but only briefly. Now cut back to Vivaldi's Gloria: "et in terra pax hominibus", then all the rest of that marvellous suite, on continuous feedback.)

Time to lie in bed and listen to the birdies waking up and greeting the day.

New year, new scans, new challenges

We've had a pleasant Christmas with family, and a fun New Year with friends. We had Christmas lunch at Alex and Marita's place, sadly missing Marita who was taken by cervical cancer two years ago, but it was good to see Alex and his mum, and the kids played in the pool with their cousin David. It was also lovely to spend some time with my mother and sister who was out from Hungary for a month. We saw her three or four times in all, never enough for me as her proud big sister, but it's good to see her looking happy and well. I hope I'll get to see her again this year. We were very close when we were doing our undergraduate courses, her in Hobart, me in Melbourne, but it became difficult to maintain that level of closeness as time went by, and after I got married and had the boys. If you're reading, Lizbet, I love you to infinity and beyond, I always have and always will. I'm sorry we've drifted apart.

After Christmas, My old housemate, Debbie, came over with her partner and their son, Jasper, who is 6 months younger than Nathaniel. The three boys got on very well together, and had a ball playing outside every day at a holiday park called Gumleaves, just south of Swansea, on Tasmania's East coast. It was our first holiday away with another family, and I hope we'll have many more, it was very relaxing and the kids hardly played with their iPads at all. David even read an entire book in two days.

I had some good walks and tried to eat well, but fell off the no carbs, no sugar wagon a little bit, and was troubled by right-sided headaches and the need to sleep for 3-4 hours each day, even without much physical exertion beforehand. Looking back over my recent blog posts, and thinking about things again, I realise that I can't remember the last time I felt refreshed on waking. I often wake up feeling the need to go to the loo, but my body is so deeply asleep, I wonder if I'm dead or alive. The need to pee suggests that I'm probably alive, which is a relief, but I had a disturbing dream last week in which I was dead.

I think my intuition has been trying to tell me something, which was verified by the results of the latest MRI scans from this afternoon.

I'm sorry to be sharing the news this way. I've vowed not to do it by mass email or text message, or on Facebook. I would prefer to be making personalised emails and phone calls, but I'm saving that for my closest family and friends. It looks like I'll be having surgery in Hobart on Wednesday, with the same surgeon I had before. At least I'm not as scared of having surgery as I was the first time, I've even wondered if I can have prophylactic mastectomy at the same time, but that's probably the least of my worries.

The little area of enhancement in the right hippocampus that was visible in April last year, which wasn't evident in July, but had reappeared, only smaller, in October, has come back. It's now about 2-3cm long, 1-2 cm thick, and is causing oedema (swelling) in the right temporal lobe, with a bit of compression of the medulla and mild effacement of the lateral ventricle. I'd asked the radiographer if I could view the scans with the radiologist, who was happy to do it, though he apologised that I was the second Dr Bardenhagen he'd had to give bad news to. The first was Marita, when they found a metastasis In her liver. I reassured him that I've already survived well beyond predictions for someone with multifocal GBMs, and that if I was going to have a new tumour, then the right hippocampus is better than the left. Our extensive pre and postoperative neuropsychological assessments of patients with surgery for temporal lobe epilepsy showed poorer cognitive outcomes for removal of the left hippocampus,with changes in verbal memory and confrontational naming. People rarely suffered major impairments in memory or language after right temporal lobectomy, apart from one poor girl who had a GBM in her right temporal lobe. Her visual memory was very poor. All this may explain why I haven't been able to improve on the visual memory and attention tasks on lumosity, despite lots of practice, and why my Lumosity attention and processing speed scores have been dropping off a bit lately. Before Christmas, I mentioned my lumosity changes to my radiation oncologist, and wondered if all his brain tumour patients think about this. He laughed and said it was only his neuropsychologist brain tumour patient who did. I told him I planned to use lumosity as a way of tracking my abilities over time, and he laughed again, saying I was the only patient who thought of such things.

It's a bloody nuisance to have this happen, when I've been doing so well, and when I've only just been cleared to drive again. I've only driven twice since the OT gave me the all clear, both times were nerve-wreaking. But not being able to drive is the least of my troubles.

The radiographer spotted something that looked like a meningioma in my left temporal lobe. A neurosurgical friend has looked at my scans and said it could be a meningioma, that it seems to arise from the dura mater. Heaven knows why it's happened. He said it's possible for GBMs to spread through the CSF, which bathes the entire brain in fluid, so maybe the little devils are taking a fluid way of getting around. The right temporal lobe lesion seems to arise from the lateral ventricle, as did the left occipital tumour in 2013.

I'm trying not to think "I'm stuffed", but things are looking a little grim.

We told David and Nathaniel that I'll need to have surgery again. David cried a lot, and was angry, Nathaniel was more quiet. Tonight he told me he wants to bea doctor when he grows up and to find a cure for brain cancer. Bless his dear heart.

We told them that we always knew there was a chance that it would come back, and that we hadn't told them before  now because we didn't want them to worry unnecessarily. We explained that I've already survived 13 months longer than 50% of people who get this terrible disease, and that we hope that I'll continue to do well after we deal with this new challenge. We told them that there are a number of stories of long term survivors on the internet, including Cheryl Brogan, Ben Willams, and Sarah Malamai. Cheryl was diagnosed in 2005, has had surgery for several recurrences, and is still hiking and camping with her sons and climbing mountains. If they, and others, have survived, then why can't I? I'm never going to give up fighting.  

The new tumour could have been in a much worse position. On the left, I'd be having language and verbal memory problems. I'd rather not have it at all, of course, but I have to be grateful that it's operable and not in a worse position. I'm also grateful that we've found it before it got any bigger, and that we have some steroid (dexamethasone) from last time which I've already started to reduce the swelling and the headache. I probably won't be able to have chemo again, after the last lot made my pancytopenic (all my blood counts dropped perilously low, and they were worried I might have had a bone marrow disorder). It still remains to be seen if I will be able to have radiotherapy for the new tumour. I need to ring my neurosurgeon's rooms at 4 pm on Monday, and he's ordered the fluorescing dye (gliolan) for surgery on Wednesday. I'd rather have it out sooner, but my oncologist said it's important to have it done optimally, and trying to have the surgery in Melbourne or Sydney wouldn't necessarily get it done any sooner, or better. 

At least I don't have to worry about my income protection insurer getting impatient about me returning to work. Even if I recover well from this new development, I don't know if returning to work is a good idea. I'll focus on my family and be a writer and an artist instead.

We might even move back to Melbourne, where there are more services, more neurosurgeons, specialist neuro oncologists, and friends and family. I don't want to move away from this town that I love, or my mother, who will be 84 in June, but we need to do whatever is best for my health. The opportunity for getting involved in clinical trials is greater in Melbourne. 

Again, I'm sorry I can't call or email you individually, but I'm thinking of you, and welcome your phone calls,emails, or prayers to the deity of your choice. Ben will also benefit from your support.

I don't know why this is happening to me. Maybe I committed multiple atrocities in a past life, maybe I haven't learnt enough yet from the challenges I've already faced. I told my oncologist that I'm thinking of converting to Judaism, which would make me a Buddhist-Christian Jew, and might be the source of several more jokes (a Buddhist,a Christian, and a Jew walked into a bar, but they were all the same body. The bartender said "oh, you're that Tasmanian who had three heads!" Boom boom!?!?)

I must try to sleep now, the Dex is already keeping me awake. However, as a final word for those of you unfamiliar with reading brain scans, structures on the left appear on the right, and vice versa. Dark areas represent less dense tissue, or fluid, or swelling. Bright areas represent dense tissue, like bone,blood vessels, or the vascular edge of a tumour. Tumours can look bright in some scans because they take up the contrast medium. The large white area in the lower left of the third image represents swelling. No wonder my head was aching and I was getting tired.

Blessings and love to all of you. May we all have a wonderful new year. I was born in the Chinese year of the sheep, and we're about to enter another year of the sheep, so it has to be good for me, I hope.

PS not ready to cry deeply yet. Have to be strong for the kids, and to see what the neurosurgeon says.

PPS prayer to White Tara for healing: "Om Tare Tuttare Ture Svaha" 

Recite the mantra for all who need healing - there are some lovely images of Tara on the web, it helps to visualise her while reciting the mantra.

PPPS I hope I haven't just been excommunicated from the scientific community of psychologists and neuropsychologists for declaring a hope that spirituality might be helpful. If I have been excommunicated, I don't care. We need to recognise that spirituality is an important part of wellbeing for many people, and that we fail to look after people holistically if we let logical positivism and science make us blind to spirituality. 

The Tibetan Buddhists have been studying the mind and consciousness for thousands of years, and are far ahead of much of western knowledge and philosophy. I'm going to start studying these things seriously, as they are more important than mundane domestic chores.

Peace and love to all.