Factual and very technical update without all the wishy-washy emotional and domestic stuff

 I've pulled through the surgery really well, and am feeling great, emotionally at least. There's nothing like realising you narrowly avoided a collision with a freight train to make you appreciate life! 

The two craniotomies have left me with some mild sensory loss on the left (face and hand), a well-resolving defect in the right visual field, that started as a partial quadrantanopia but is more like a scotoma now - a wavery patch where the visual input is pixellated, but can be corrected by scanning. I'm a little uncoordinated with my right hand, and nearly dropped the baking dish that I pulled from the oven tonight, but I didn't burn myself. I think this must be visuoperceptually-based, as I have to really think about using uncommon punctuation marks when typing. I know what they should look like, I see them on the keyboard, but I have to think carefully to make sure that they match what they should be. My touch-typing allows me hypens, commas, full-stops, colons and semi-colons, () are ok, but the others just look a little wrong. A kind of alexia (inabilityt to read) symbols, but it's getting better. I also wonder if my proprioception (sense of where my body is in space) was mildly affected, accounting for the clumsiness of previously automatic coordinated hand movements.

The biggest issue has been the side effects of the dexamethasone used to reduce the cerebral oedema, but my postop scans from last week show that the oedema is almost fully resolved. So it's just a matter of slowly reducing  the dose of Dex, and resisting my natural inclination to take on tasks and finish them. I'm getting much better at writing to-do lists, and avoiding multi-tasking. 

I've referred myself  to the Outpatient Rehab Service at the LGH to help me get through the postoperative recovery period, and the 6 weeks of combined chemo and radiotherapy that will commence here in Launceston next week. It will be strange to be a client of my colleagues, starting tomorrow, but I know I'll be in great hands, and it will be interesting to be a patient undergoing rehab :)

I feel that I have a very good chance to be among one of the 1 in 5000 GBM patients who survive for decades. Why the hell not? I have absolutely everything to live for, and am determined to do so. It's only 44 years until I'll be due my 100th birthday greeting from King William (King Charles having died before his 100th birthday by then).  

The only thing going against me was the presence of two tumours, but the surgeon said there were not any flourescent tumour cells left under after he resected the second tumour. He said the Gliodan allowed him to remove 30% more than had been visible with the neuroimaging. 

With luck, he got all of the first, encapsulated, tumour out as well, and my forthcoming radiotherapy and chemotherapy will suppress any remaining GBM cells.  I'm also embarking on major changes in diet and lifestyle in order to optimise my recovery. And looking at existing medications that are bad for gliomas, like Dissulfuram, Cytomegalavirus therapy, an antihypertensive that increases the permeability of the blood-brain barrier, and immunotherapy trials.

If the tumour recurs, I suspect it will be in the right parietal region, where the resection was done without Gliodan. It was probably growing there since 1997, when I first started getting terrible headaches that were attributed to sinusitis. If it recurs, we'll have the Gliodan solution to help the surgeon maximise the resectable boundary. I think I could cope with a bit of hemiparesis, if it came to it. But that's not going to happen.

I enjoy beautiful or funny get well cards (particularly the funny ones), if you'd like to send me one (PO Box 93, Launceston TAS 7250). This event has brought great joy and positivity to my life, and maudlin "get well soon" cards are a bit of a downer :)

I'm also happy to get your emails, and phone calls from old friends would be most appreciated, I'm worried about a couple of you who haven't returned my calls. I have my phone off when I'm sleeping, and have become skilled at knowing when to stop talking.

wishing you all a great week and the very best of everything

Fiona

Dexamethasone and Convalescence

150am on Tuesday. Feeling wide awake, so I'm snuggled up on the couch under my cousin-made quilt, listening to the rain squalling outside, watching Fiddler on the Roof on ABC (I've never seen it before, shame I missed the first 40 minutes, but it will go to 4am, if I do). Ginny is quite happy lying on her bed outside. A little too happy. She loves the sound of her voice at night, so I've brought her in  before the vocal warm-ups become full-throated barks.

I've had a few hours of almost solid sleep - 930-1100, 1145-1 with 5 mg of Valium. Not ideal, I know. I hate the thought of needing benzos to sleep, and valium is one of the worst, but they didn't send me home with any temazepam, and it's hoped that I'll start sleeping better as the Dexamethasone dose is reduced further. I'm feeling good though, and will go back to bed if I feel sleepy. Or end up sleeping on the couch while the movie finishes....

Yesterday was not a good day. I had lost the letter with the neurosurgeon's instructions to reduce my dose of Dex from 2 mg 3 times a day to 2 mg twice a day, which would have sen me on 4mg a day by last Thursday. I had taken 2mg+2mg+1mg on Sunday, after the overstimulation episode, and felt better on Sunday night and yesterday morning. My rad onc had advised to take 4 mg yesterday morning, and 1 mg at 1pm, still a total dose of 5mg, but it totally whacked me for six.

I was up with David for breakfast at 530, took my tablets, and by 730 needed to crash. I slept for an hour, but not well, and when I woke up, my entire upper body was aching and weak, particularly arms and shoulders. I felt dizzy and unsteady and very tearful. I can cope with the slight weakness and incoordination of the legs that Dex causes. I can cope with the wonderful sense of clear-headedness. I quite enjoy the euphoria, thought I hope that it's not just the Dex, I really feel incredibly lucky to be alive. I know I'm lucky to be alive. And I'm so grateful for all the things I have - it's not a chemical euphoria. I have experienced a life-changing event. But I can't cope with the proximal body weakness. It's awful to feel achy all over, and weak, and like you will fall over if you get out of bed. I hate that.

I spent most of the day in bed, thankful the boys were out swimming with friends, and glad for the help of my cousin's husband in the house. He came regularly to help during my breast cancer chemo, cleaning, tidying, cooking, and gardening as required, and he's been a godsend this last week. Just to have someone to do little things for me, with the most enjoyable being moving pictures and small pieces of furniture around the house, and helping me to declutter. It's been so therapeutic to get rid of things hoarded for too long out of sentimentality, and to rearrange our various paintings and pretty things. I can really feel the energy shifting in a positive way in the house, and it's good.

Anyway, the Dex issue is fixed, I hope. I'm going to follow the neurosurgeon's plan, now that I've found it. I will take 2 mg in the morning, and 2 at 1pm for the next four days, making a total of 4mg. Then I will reduce the 1pm dose by 0.5mg for another four days (3.5), then I will reduce it again so that I'm on the 2mg +1mg dose that my rad onc says is the desired dose for my RT, which may cause some cerebral oedema.

It worries me how other patients would cope with this. Imagine if I had cognitive impairment, if I couldn't think things through logically - I suppose I'd have been given more support if I was a more ordinary patient. Not that I'm extraordinary, but I guess I am different. And I wouldn't have gotten into this pickle if I hadn't lost the weaning schedule that arrived last week. I would have been on 2+2mg since Thursday, and yesterday would have been the start of  2+1.5mg dose. So I'm four days behind. Could be worse.

Fiddler on the Roof is quite a nice movie, I'll have to pay attention to it now, lying on the couch, glad for the underfloor heating in our family room, glad for the rain on the roof, for children and husband and dog sleeping soundly, for this wonderful life.

love to you all

x

One view from my bed. 

Oops! the perils of overstimulation.

It was Ben's birthday today, and it started well.

I slept pretty soundly last night, and woke feeling rested. And ravenously hungry again. Thanks Dexamethasone! I'd mixed up a big bowl of bircher museli yesterday (1litre greek yoghurt, one cup quick oats, raspberry and rhubarb compote, blueberries, and one quarter cup each of all the nuts and seeds that Ben had collected for me: almonds, brazilnuts, cashews, pistachios, hazlenuts, pecans, sesame seeds, sunflower seeds, pumpkin seeds, pinenuts). The bircher lasts in the fridge as long as the yoghurt, and I'm eating 2-3 small bowls of it each day, garnished with cold-pressed flaxseed oil.  I figure I'll get at least a few different nuts each time I eat it, and my reading suggests that they're very nutritionally rich foods. Interestingly, nuts are more nutritious if you soak them in water first (about 7 hours or overnight) and then dehydrate them slowly the next day. I have three batches soaking right now, so I can dehydrate them in the oven over tomorrow.

It was wonderful to lie in our kingsize bed this morning and watch the sun rise through our bedroom window - just the exposure to morning light that I love. The boys found their way in after 6, and we all lay on the bed together, reading, playing games, dozing. I slept again from 7-830, then had a satisfying half hour sorting through my clothes, not yet unpacked from our move downstairs 4 weeks ago, and sorting the laundry. This frustrated Ben, he wanted me to rest - which frustrated me because I had rested! I needed to find something to wear for our breakfast at StillWater, and because I don't particularly appreciate being told what to do or what not to do (one of my most irritating marital faults, apparently :) ). I kindly reassured him that if I have the energy to do something at the moment, I will, and it gives me a great sense of self-efficacy and accomplishment to be able to start and finish a task, even one as simple as sorting and storing clothes. If I need to rest, I will do it. I just don't like being told to drop everything and rest right now, not when I'm in the middle of something. By the end of the day, I think that we established that I appreciate his concern for my welfare, but that I'd prefer he ask me how he can help, rather than walking in and giving me orders. (Oops! reading that, in the light of morning, and I can see I was probably a little irritable yesterday. Poor Ben. He was just trying to help).

StillWater is a lovely restaurant in the bottom of some old silos at the base of the Cataract Gorge. It is clean and rustic, with picturesque north-east facing windows that fill it with sun in the morning, and the most beautiful views of the water floating by. Ben, Mum and I ate lunch there to celebrate the end of my radiotherapy in August. I ate breakfast there two days later with old school friends Philippa, Jen, and Edwina to celebrate the same thing, and we took Ben there for breakfast for Fathers' Day, which was the week before we found my brain tumours. It was good to eat there again today. I had the big breakfast - poached eggs, relish, baked tomatoes, mushroom, bacon, gluten-free scones, with extra mushrooms and spinach on the side. Their creamed cassia rice with quince is also a treat, but too sweet, and I was craving protein and vegetables. No matter how delicious, I can't live on my bircher museli alone...

Sitting in this lovely place, I soon realised that the cheerful hubbub of conversation was too noisy, especially when combined with the foot-kicking antics of two hungry boys sitting either side of me, competing for my attention, and their tendency to want to keep touching me. It's hard to get them to understand that I need less stimulation, not more, and I very nearly lost my temper with them and created a scene in front of everyone. There was just too much noise, light , and stimulation. I felt like a pressure cooker building up steam, and I desperately wanted all the noise and stimulation to stop. Taking a deep breath,  I moved the boys to the far end of the table, and sat at the head between Ben and his friend Umit instead, which made an immediate difference. Putting my sunglasses on also helped - just toning down the light made things less irritating. I don't care if I looked like a poseur - anyone who may have judged me for wearing shades inside would have noticed the wobbly way I walked to the bathroom with my forearm crutch, the arduous process up the stairs, and my relief to have Ben walk beside me as I came back down. I felt disabled and very vulnerable for the first time in my life. I was afraid of falling over, and was determined not to do so, especially coming down those shiny wooden stairs. It was a relief to resume my seat with my dignity intact. I felt like I'd achieved a major victory, but had also learnt an important lesson. I can't rush this recovery. Resting at home as completely different to going out, and I need to pace myself, and give me at least 4 weeks to recover from the second surgery - that's near the end of October, at least. We used to find that it took around 6 months for our temporal lobectomy patients to feel recovered after surgery, so I need to keep that in mind as well - one step at a time, and I should be feeling back to normal by the end of March next year.

I was surprised at how overwhelming the dining experience was, since we'd had a lovely relaxing lunch after the first surgery at the Revolving Restaurant in Hobart. Then I remembered that we were just about the only ones there, it was very quiet, and we were getting a one-hour scenic view of Hobart. StillWater was just too noisy and vibrant. I will need to do my socialising by having people to come to my place for next month or so, at least.

I rested a little when we returned home, but not enough. David did an excellent job tidying up their lego in our former bedroom upstairs, and then went out with Ben to collect some roast chicken and vegies for lunch. I got Nathaniel to take our Tibetan prayer bell around the house and make as much noise as he could, in a form of space-clearing. I told him to say "All you need is love. Love is all you need" as he rang the bell (seemed as suitable as anything), and he did the task, but didn't enjoy it as much as I had hoped. He then started nagging me for an in-app purchase for Clash of Clans on my phone. I said no, started counting him, explaining that if he got to three, there'e be time out and I'd take the phone. Which is what happened. He refused to do time-out, yelled at me, called me names, hit me, and then proceeded to load a nerf gun and shoot it at my Guardian of Feathered Creatures painting. That upset me more than anything else, and Ben and David came home to find me crying my heart out,

Nathaniel was furious because he's set up 8 P.E.K.K.As to attack another clan and raid its 1240 dark elixir, just before I'd confiscated the phone. He lost one PEKKA and the chance to raid that clan because I took the phone away. I understand his frustration, but he chose to keep nagging me and was warned I'd take the phone. Games on the iPhone and iPad are a blessing and a curse. They can be fun and educational, and I enjoy playing them, so it would be hypocritical of me to not let the boys play at all. But the kids can get so absorbed in them that it becomes  almost impossible to separate child from device. We've found that setting time limits helpful (30 minutes seems best), and limiting access to the devices also helps. Unfortunately, recent events have made me grateful for anything to keep the kids quiet, and they've slipped back into bad habits. Nothing like the school holidays to get them back on the straight and narrow.  

After those dramas, I dosed again, then got up for lunch when Mum came. I really should have stayed in bed. I was so tired, every little thing was an effort. It was a bit rigid of me to force myself out of bed and help get lunch set up. Mum could have done it. To simplify things, I'm trying to get Ben and the boys to stop and listen to my detailed instructions on what needs to be done - it saves cognifite effort for me, but requires them to attend to me, remember what I said, and preferably not have to keep asking me what needs to be done next. I know that this isn't a recommended way to get children to complete tasks, but I'm the one with the compromised brain function here, and having to keep going in to help them adds to my distress. I just need to let go of my need to control, and trust that they will be able to get it right, even if it's not exactly the way I'd want it to be. Easier said than done, but something I will try to do, for everyone's sake.

I slept after lunch, then put some laundry on, then just enjoyed lying in bed for the afternoon. 

We rang my rad onc because we finally found the written weaning schedule for my Dex. The neurosurgeon in Hobart had wanted me down to 2 mg twice a day (morning, evening) by last Thursday. The second opinion doctor had said 4mg in the morning and 2 mg at 1pm would be beter, and my rad onc agreed, so I tried that on Thursday, but I felt awful. Nausea, vertigo.... so I went back onto 2 mg three times a day since then. I really should have told my rad onc that the 4 +2 felt bad, but better late than never. 

The plan is to do the 4 mg/ 2mg dose from tomorrow, and to stay on that for the six weeks of combined RT/CT. Going off it completely isn't an option, as the RT may cause cerebral oedema. Even if I wasn't going to have RT, I'd need to be weaned off slowly.  Dexamethosone is a powerful drug (look up the side effects if you like). The biggest problem for me is the sleep disturbance. I took a 5 mg of Valium at 8pm to try to help me sleep, but that's long gone. I was awake and alert since 11pm, and know that I won't sleep if I go back to bed. I just lie there with my eyes closed, my body resting, but my mind still vigilant and coming up with excellent to-do lists, to foster a sense of achievement and accomplishment in the months ahead.

230 - I think I'll wake Ben and ask if I can have another Valium. It's not ideal, but it's all we have in the house at present. It can't be good for my health to be missing out on sleep, but I let Ben and my rad onc talk about beter agents.

wish me luck, I've written myself to a sleep window. Time to slip through and fly with Peter Pan and the Lost Boys.

730 am - Ben said no more Valium last night. I managed to sleep from 3 to 5, so a total of 5 hours last night. I've been up with David, my perpetual lark, since 5, and am starting to flag again after a very therapeutic blogging session (the stuff about the walk to the loo, recognising my irritability, and the problems with i-games are from this morning, the rest was between 11 an 2 last night). I'm going to cook a couple of eggs, and then head back to bed. The boys are going out with friends to see Turbo today, and I'll have a quiet day at home.

A good day

I managed to sleep quite well last night, and yesterday afternoon, maybe a couple of 2-3 hour snatches. The boys had been at their cousin's all day, and didn't get back until 8pm, when I was just passing between bedroom and bathroom. At 5pm I woke from a restful sleep and, thinking the boys might be home, did my best zombie walk down the hallway, moaning "Brains! Brains!", only to make Ben's friend Umit jump out of his chair in shock. Well, a good impression of someone trying to look alarmed.

So yesterday was a good day. I rested in bed, did a little tidying, slept, and had a lovely visit from Shawn, who brought some yummy nuts from the market. We sat and talked on my bed for a while, it felt a bit like being at school and college again, using one's bed as a platform for talking, and then we went and drank some exquisite Chinese tea that Shawn's parents had chosen for me - tea that brews in less than 10 seconds, and you can get up to 6 rounds out of the one sachet. I'll have to ask what it was called. We discovered that the savoury nut and seed mix goes very well with Blue Castello Cheese....very well indeed. It was a thoroughly hedonistic afternoon.

And Friday night was great too! Umit had come up to stay, I'd had a good sleep in the afternooon, and another one after an early tea, so when I woke at 7pm I felt fresh and happy. David had made his first batch of pancake batter at 530 that morning, but I'd gone to sleep before we could cook it. I felt like partying,  we had batter ready to go (half cornflour, half tapioca flour because I'd run out of regular), and there were oranges and lemons to use, and the Crepes Suzettes we'd had at the revolving restaurant in Hobart were so nice.... I set Nathaniel to juicing 4 oranges and 2 lemons, while I cooked 6 lovely light crepes on two frypans. We all sat down and watched Mamma Mia and ate our crepes, and I felt like I was finally spending a Friday night the way I've been wanting to for the past 10 years. I felt like the old me again.

For a long time, I've felt a slight mental fog in my head, like there's something distracting me, holding me back, slowing me down, making it harder for me to think clearly. I thought it was just a result of 11 years chronic sleep disturbance from David, plus the effects of Hashimoto' hypothyroidism after 2008, plus recurrent sinus headaches, plus being stressed for a number of significant reasons. Dad developing normal pressure hydrodcephalus in the late 1990s but not being diagnosed and treated until 2004, and then his slow decline until last year. Ben's dad ending up in a nursing home in 2005, and his mum coming to live with us so that we could take her to see him each day, the stress of seeing Ben's dad deteriorate over 3 years, and the amazing, selfless devotion that Hannah showed him. The stress of trying to be a good mum and have fun with two young boys while worrying for and caring about older loved ones. The intense frustration that people with brain disorders have been neglected and continued to be neglected in this country while people with mental health conditions can access publicly funded clnical psychology services since 2006 - yet for someone with a known or suspected brain condition, there are not enough neuropsychologists, training programs are under threat, and there is not a Medicare item to cover a neuropsychological assessment. If you have a mental health condition, you can see a cliinical psychologist for 10 sessions, worth about $1300 at the bulk billed rate. If you have a known or suspected brain disorder, and NEED to see a clinicial neuropsycholgist, you either have to pay out of pocket, get seen through one of the scarce public resources, or don't get seen at all, unless you're covered by DVA or a third parrty  insurerer.  The injustice of the omission of neuropsychology from Medicare has been an ongoing issue for me, and one thing where the passion it stirs has not diminished my reasoning abilities. No, thinking about the last ten years, I suspect that my parietal tumour has been slowly growing and sapping my emotional energy, making it hard for me to keep positive, making me more sensitive to criticism from Ben, but I just attributed it all to sad things happening in life, and lack of sleep. Of course, I worried about my brain, but my fMRI research scans in 2001 looked normal, and my recurrent sinus headaches, which had started in 1997, always went away. Well, after a week or two of antibiotics, sometimes.

It will be interesting to find the CD with the fMRI scan, just to see if there's anything  in the parietal lobe. Contrast isn't used for fMRIs, so it wouldn't have picked up anything obvious, but all conrol scans were checked by a radiologist for "incidentalomas" - those spots you find when you'e not particularly looking for anything. Actually, thinking about the scan now, I remember someone remarking that my right parietal lobe was rather well-developed - I remember it seemed a little plumper than the left, though the ventricles were equal. I intepreted it as a sign of my rather good visuopatial abilities...and never asked anyone about it - there was nothing to see, nothing reported.


So maybe the tumour has been growing there for a number of years, and would have declared itself this year anyway.

I'm so glad it's out, and I hope it never comes back.

I've changed the name of this blog, again, after remembering something an astrologer and  Tarot reader told me in 1994. She said that I have an incredible capacity to manifest things, which I just intepreted as the usual tarot astrologer mumbo-jumbo that one would expect in Paddington in 1994. However, given this year's experience of manifesting things that I want, though not usually in the way I wanted, I thought a new title for the blog was crucial. So it's moved from #1 Neuroboob, to #2Neuroboob: the story of a neuropsych who defeated breast and brain cancer in one year, to #3 Neurobooob: loving and living well for many decades after having breast and brain tumours in 2013.

I hope that's specific enough for a universe that seems to want to help me get a year off work (breast cancer) get the chance to move my career towards advocacy for people with brain disorders (by giving me my own); get my house painted and gutters, fascia etc repaired (an excellent, honest, builder who I'd consulted about doing a renovation is able to get started next week), and for me to be able to have people drop by and visit me at home (I can't drive, and walking wears me out, so I'm enjoying lots of visits already). Wow, I'll even be able to indulge my love of baking, to feed all the visitors and children. I think I might be onto something with the blue castello and spicy nuts mix....

"Guardian of Feathered Creatures"  by Lina Kurtschencko
The first painting that Ben and I have ever agreed on. Strangely, most of the art that Ben has bought involves birds., so he had to relate to this one!

"Windswept sisters, Mackay" (1985).
One of my less good HSC paintings, the sisters were a genteel pair who sat near us on a five day rail trip from Brisbanc to Cairns in 1982. This painting and our new one seem quite happy together in my room, and the Guardian in the new painting reminds me of them.

Second postop MRI, spring cleaning, prayer flags

I had my staples removed this morning, a little fiddly for some to come out, but not uncomfortable. I was allowed to keep the staple-removing scissors. David promptly discovered they are good for clipping the leads off pencils...not the most constructive use, but creative. My MRI was scheduled for 3pm, it took about 40 minutes, with lots of noisy clanking and pulsing and a gadolinium contrast. I dozed off on the trolley waiting for the scan, and then dozed off again during the scan, head comfortably rested on a foam pillow, headphones trying to pipe classical music over the machie noise (Vivialdi's Spring put up a particularly valiant fight), headphones clipped into a head brace that stops the head from moving. Motion artefact makes scans hard to read, and I wanted mine to be pristine, as today's MRIs will be used in planning the radiotherapy approaches to my two tumour sites. So I hope I didn't entirely sleep - I startled myself by snoring once or twice, and think I moved my hands, but my head was comfortable and securely fixed in place.

They gave me a CD with the scans to bring home, but we can't open it on any of our devices. No matter, really, we know I have a brain, and it's safe in its cranial vault.

My rad onc will be working on the planning phase over the next few days, and I'm not sure when I'll start the CT/RT combo, but that's okay. Recovering from brain surgery is tiring, and having a delay before treatment starts means that I'm getting lots of rest, rehydration, and nutrition. And delightful interactions with other people! It's so wonderful to hear other people's stories. Nice, simple, everyday tales, or dramas or love strories. or work intrigues. There are so many fascinating stories in people's lives.

A lot was achieved in our house today. Removalists came to take Hannah's things to Canberra, where she will be living with Ben's brothers Solomon and Jacob. One wheelchair, one bath board, one over toilet seat, three cartons, and one very carefully packed mantle clock. I had packed her things a few weeks ago, feeling slightly guilty for not having the time and energy to sort through all the bills and papers that elderly people accumulate, but knowing that it was the careful packing of sarees and plates and various knicknacks that would matter the most (I hope they are safe!), and I trust that my in-laws will forgive me for not sorting through the papers.

While on site, I had the removalists move some furniture within the house. The old wardrobe that I found and stripped back while living in Carlton in the early 1990s is now in the small bedroom upstairs, and the window that it blocked in my walk-in-robe is in desparate need of a gauzy blind. The treadmill is now in the rumpus area upstairs, fitting perfectly under the slope of the roof until I'm able to start using it again. The little cupboard that Mum's father made is upstairs too, full of sumptious fabrics I collected in SE Asia two decades ago, and items suitable for gifting for others.

The large flokati rug that has never lived under our bed will be finally assuming its correct position tomorrow. Little Popo, our departed Tibetan Spaniel, was a compulsive marker, so it's been kept unused for over 10 years. Now that he's gone, it will spread sumptiously out from under our bed. Bliss!

The old sofa set from Eltham is off to be reupholstered - turquoise, I think, to match a mosaic mirror frame in our family room. And then the dreary brown sofa set currently in the family room will go upstairs to the rumpus.

A few bags of hoarded clothes and jackets have been donated to charity.

It feels great to have moved  things around, the energy in the house is feeling better, and Lord knows we need it.

I was horrified to find a bundle of Tibetan prayer flags in a dining-room drawer the other day. They belong tied up in the air, so that the wind can take the prayers and float them across the universe. I don't know why I'd neglected to put them up when we moved in 2010 - maybe I couldn't find a place? The first place I found was perfect, running across the back of the house, from the kitchen window to the back door.

I feel the desire to buy many more prayer flags and fly them in our garden. It will look like a hippy place on the hill, but I want to fill the sky with prayers for compassion and health and joy and forgiveness and joy and unconditional, endless love for all sentient beings.

(a child of the 70s finallly entering her latent hippy phase.)

All you need is love.

Love is all you need.

My kind removalists

New mantlepiece arrangement. Feeling right, at last :)

Left occipital with staples

staple-removing scissors

Staples

 All gone

Recovering from two craniotomies

This isn't a walk in the park.

Mentallyt, I feel incredibly alert at times, particularly in the long hours overnight where I can't sleep, thanks to the dexamethasone that is reducing the oedema that remains after surgery. I snatch sleep when it comes near me, but often the body is exhausted and my mind is wide awake, thinking of all the wonderful things I want to do with Ben and the boys in the coming years. 

I tried to fool myself to sleep last night by matching my breathing to Ben's deep sleep rhythm, but it still didn't bring on the sleep I needed. It's not that I'm not sleeping at all, it's just that I'm not sleeping as long or as deeply as I need, though that's getting better over time. I could almost swear that I had 3 naps today.

In terms of physical recovery, I'm astounded at how weak I feel. I need to use my arms to stand from sitting on the sofa. I leant down to pat Ginny this evening, and couldn't pull myself up on the door frame. So I crawled to the sofa, rested my forearms on it, and managed to stand from there. It's like the power in my quads had almost completely gone. 

A physio friend suggested that I do three sets of 8 sit to stands at the dining table, with 30 seconds between sets, just once a day. I tried it after my crawl to sofa to stand episode tonight, and found that I almost needed to pull myself up with my hands. My thighs are just so weak! 

This has also affected my confidence in walking - I'm ok if there's something on my right side, and I find myself wanting to hold someone's arm on the right, just in case. The last thing I need is a fall. I'll be borrowing a forearm crutch from the hospital tomorrow, that might help me feel a little more stable. Not that I feel unstable in the house, with its nice straight halls and minimal trip risks, it's just a little less safe outside, with uneven surfaces, and unexpected obstacles (like the vine that tripped me on Tuesday morning).

The visual field changes are tiring. I've lost my fascination with the way my brain is trying to compensate for the missing data, and am instead having to learn how to deal with reading on screens. My iPhone is a little too small at times, and my iPad is annoying because I can't feel the keys. Getting the cursor in the right position is also a pain, and I don't have five minutes to waste on selecting text. 

Ben bought me a macbook air, and I've fiddled with the accessibility options, which is helping me to zoom in and use large font, so I'm finding this more fun. It's especially satisfying to see that my touch-typing hasn't deserted me!

Emotionally, I'm a bit up and down. I still feel a wonderful sense of calm and bliss at being alive, but I get frustrated when others keep acting as if I were normal - nagging kids, husband irritated when he told sofa-seating me to tell child in bath to leave water in for him, me telling him to do it himself as I was resting after just making dinner for everyone (smoked salmon patties with coleslaw and sweet pototoe salad, thanks dear people in Sydney). I know it's a bit much to expect children and husbands to remember that one is feeling under the weather, but it would be nice if one didn't had to remind them. And it would be nicer still if they could cease and desist from their petty bickering. I'm going to watch the 123 Magic DVDs tomorrow and see if I can help increase desirable behaviours in my offspring. Watching a bit of it today has already resulted in the boys doing some furniture-moving upstairs, where one bedroom is going to become the lego hobby room. Paradise!

The only other interesting thing to report is my craving for natural foods. I've made a huge bartch of greek yoghurt mixed with almond, oats, hazlenuts, walnuts, chia seeds, sunflouwer seeds (basically, whatever I could find in the pantry), and I eat it with blueberries and flaxseed oil. It tastes utterly devine, and my body must be craving minerals. I also enjoyed a wonderful haloumi and salad sandwich brought over by Jenny, my lovely neighbour. I've always wanted the chance to get to know her better, she and her husband did the hippy trail through south-east Asia in the 70s, and she practices yoga and other healthy habits, as well as being a delight to know. She's happy to pick things up from the shop for me, and just to drop in, so I'm feeling very glad to be living in a lovely house with a kind lady next door. (Did I mention she makes THE BEST minestrone I have ever tasted?) 

The next 28 weeks of treatment could be very pleasant, socially. And coming into spring and summer is a nicer way to start treatment. The sunshine and flowers always lift my mood.

Oh, and did I mention I plan to go and buy a prosthetic breast from Judy's Body Fashions in Yorktown Square next week? Time to regain some symmetry on the boob front, the skin has healed up now, and summer's coming!

Feeling a little like a spring lamb now. Time to gambol and frolic to sleep.

Handling the interface of personal and professional

As a somewhat prolific poster on an australian neuropsychology internet mailing list, and as someone who had been on the national committee of the College of Clinical Neuropsychologists (CCN) since 2006, serving as Chair from 2011 until my breast CA diagnosis in January 2013, I felt I should be honest and open about the reason for my stepping down as chair when I was diagnosed. I received many messages of support and appreciation, often from complete strangers, or unexpected sources, and it was good. 

I felt bad for burdening my colleagues with my health problems, but I felt worse because the health problems were stopping me from progressing teams to work on a  a number of key projects for the college, particularly to do with access to Medicare, improved training and funding for neuropsychology coursework, placements, registrar conditions; developing competency-based placement evaluation forms; supervision training for supervisors and trainees, seeing if we could use level 1 trained psychological assistants to improve our work efficiency (see more patient by supervising the more routine aspects of our work - imagining the productivity improvements if we could do the clinicial interview, history, and review and interpret the results of an assessment done by a well-trained technician, rather than insist on doing every. single. thing. our. selves. I've always enjoyed supervising students and seeing them develop from novice to advanced skills, and I don't see why a Level 1 psychologist could be trained to conduct certain parts of an assessment under supervision, with video backup as evidence. We are more likely to get funding for psychological assistants in public health settings than we are to get additional neuropsychological positions. And don't get me started on the travesty in NSW, where neuropsychology positions and clinical psych positions are advertised as one. There need to be a clear demarkation from the employer as to what they want.

Under my second year as CCN chair, the plan was to improving access to neuropsychology services in regional, rural, and remote Austraila; improving student particiption in the CCN and development of a greater collegiality in the CCN so that people would share their ideas and inspirations, to the betterment of the whole profesion. I had a brilliant, enthusiastic group on the CCN National Committee, and I was so looking forward to working with themon the various projects. We were going to have fun with these things in 2013, strengthening existing ideas and inititiatives, and developing new ones to strategically plan for the future.

Then the rug got pulled out from under me by the discovery of a 7cm invasive ductal carcinoma of the left breast. I had to have a mastectomy with secondary lymph node clearance on January 31st, followed by 6 cycles of chemotherapy and 6 weeks of radiotherapy. 36 weeks of treatment included 5 episodes of febrile neutropenia requiring hospital admission and IV antibiotics for up to 5 days at a time. 
It wasn't fun. It was tiring. I wanted it to be over. I lost the desire to shop (quelle horror!), and the though of scheduling celebrations to mark the end of the treatment phases just demanded too much energy. All I wanted to do was take the boys to Queensland for two week's school holiday, catch up with my beloved cousin Caroline and her family, and meet up with my wonderful CCN family at the conference in Brisbane on Ocober 3.

Just when I thought it was all over, just after my last radiation treatment on the 22th of August, just after having celebratory meals with family and friends, just after handing out chocolates and cards to the Chemo and Radiation teams at the Holman Clinic (writing that I was glad I'd never have to see any of them in a professional sense again), just after thinking that my treatment was behind me, and that I would be able to start getting fit and strong again....Just then was when I discovered a second rug had been pulled out. Not one, but two, masses were growing in my brain. A large, ring-enhancing lesion in the right parietal lobe, with surrouding oedema and mild mass effect; a second, smaller lesion, slightly dense, no ring-enhancement, mild oedema, at the end of the lateral ventricular horn of the left occipital lobe. The initial differential diagnoses were breast metasteses or cerebral abscess, but they turned out to be gliomas. Nice, high quality, high grade, aggressive gliomas. Grade IV. Aim for the top! Get the best quality you can!

I know I should have sought assistance for my tendency to be an overachiever. I didn't realise that a behavioural trait could manifest physiologically....

I have great faith that I will get through this okay, relatively unscathed. My post-op symptoms from the craniotomies on the 6th and 12th of September are mild. Just a little weakness on the left , and a resolving visual field defect on the right. Some proprioceptive change on the right - I need to be careful when pouring drinks, or the counter gets wet, and I need to watch where I'm walking so that I don't slip and fall like I did the other day. I also need to be sure to be aiming my derriere at the correct chair, lest I land on the footstool again, like I did the other day. I have to avoid swatting on the floor to pick up low items, as my calves and thighs need assistance from my arms to get me upright again - or I crawl to a bed or strong chair where I can pull myself up. The corticosteroids weaken the long muscles, apparently. And make it hard to sleep. And suppress cortical oedema, which, untreated,  causes drowsiness, irritiability, photophobia, nausea, vertigo, and a general sense of maliase. I'm being weaned off the Dex, but slowly, I don't paricularly enjoy the nausea et al, and I so desparately want to sleep! 

I'm young and healthy. The lesions were resectable, and the Stupp CT/RT protocol should stop them from recurring. It's not a curable form of cancer, but it is treatable. And at this stage mine is eminently treatable.

So, knowing that some word would have got out among our small neuropsychology community (<500 in Autralia), I wrote and sent the following email tonight. I haven't been brave or honest enough to say exactly what is going on, because I know GBMs are much nastier affairs than breast cancer. I don't want to upset anyone, I'm not doing it for attention, but I'd rather people know the truth. In all honesty, the email doesn't contain the truth like this blog, but it's the best I could do. I worry that people will think I'm being a attention-seeking drama queen, though I know that's just not true. I've seen some pretty unpleasant things happen to people in my life over the years, and have given up on trying to make sense of it. Far better to "gather your rosebuds while you may, for summer days are flying, and that same flower that shines today, tomorrow will be dying". Or, Carpe Diem.  Seize the day.


Dear colleagues

If, like me, you have always been interested in knowing about the brain, you may have found some conditions too horrendous to contemplate because of their reputation for rapid and terrible suffering and mortality. For me, these conditions included CJD (which I saw rapidly consume the 48yo mother of a beautiful Indian bride) motor neuron disease, advanced Huntington's disease, behavioural variant Frontotemporal dementia (especially heartbreaking to see it steal a 22yo new graduated mother, and how it destroyed the family of a loving 36 man, who had taken sides on what appeared to be a pending divorce before the diagnosis became clear. Aggressive brain tumours are also in my feared conditions list - they have the power to kill rapidly and efficiently, and median survival outcomes seem dismal. 

I've been thinking about these conditions where we rarely seek to tread, and how our fear gives then power beyond reason - and the patient can get lost. At worse,they sense is that something very bad is happening, and that things are dire. At best, they are informed and supported and given hope that not all is lost. Look at Stephen Hawkings! still going strong with MND. Look at the late Christopher Reeve. Look on the internet, and you'll find heartening tales of survival and hope for people with all manner of terrible diagnosis. Act as an informed clinician, ignore the awful what-ifs, and enhance the quality of life of the person who has a very unfortunate diagnosis.

To help demystify one of my top  scary brain disordrs, I would like to recommend the following article to you.

http://neurosurgery.ucsd.edu/glioblastoma/

It is excellent. It provides hope through the use of calm, factual, plain English, without the emotive drain of survival statistics.

Good for cutting though the fear of death and disability.

We need to cultivate hope in our patients and their families. Even if a diagnosis is grim, there is always hope. There will always be love from family and carers. There can be dignity in disability. That is, unless we put our fears in the way, then we minimize the potential of the patient and family to make the most of the situation they are in. We're not helping the patient in such a situation, we're dealing with our own fears of death, loss and suffering.

Not a very technical neuropsych email, I know, but I need to use my insomnia productively :)

I wish I could join the many of you who will be celebrating the CCN's 30th year at the conference up in Brisbsne on the 3rd! I'd strongly encourage any swinging voters to register before the deadline, as it's going to be a great program, and will give you all the chance to see Brisbane, which has a charm of its own.

My favourite ID card of all time. An inadvertent "glam" shot from my postdoc fellowship at BUMC and VA Jamaica Plain. Taken in 1997,  I'd just completed my PhD, turned 30, got engaged to Ben, and was doing a 6-month stint in Boston  with Marlene Oscar-Berman.  I met a lot of wonedrful people over there, including neuropsychological legends like Edith Kaplan, Howard Goodglass, Laird Cermak, Mieke Verfaille, ...and that was just in Boston. I was a total fangirl at the 1997 NAN, and introduced myself to everyone who's name I recognised. I'd been reading their stuff for so long - Munro Cullum, Kerry Hamsher, Robert Mapou, Wilma Rosen, John Courtney, Paul Lees-Haley, Graeme Senior  :)... it was a blast!
It was fun living and working in Brookline, though lonely.  I loved going over to Harvard Yard and Cambridge on the weekends. Seems so long ago now.

Recommended reading

http://neurosurgery.ucsd.edu/glioblastoma/

This is excellent.

Calm, factual, plain English.

Good for cutting though the fear

 I refuse to attribute my euphoria to the dexamethasone! It's like when my gynaecologisf said that my post-delivery europhoria was due to opiate analgesia! Smug bastard!

Home again - a tiring and busy day

It's so good to be home! 
The house is silent. 
No dinging of bells, no shuffling of feet, no rattle of observation trolleys. 
No visitors to check my obs.
No chance to ask for obs to be taken.
No need to worry why my temp might be up, my BP down.
Hardly a sound from outside.
The silence is perfect.


We had a good run up from Hobart. I sat between the boys in the back seat, Nathaniel dozing against me, David reading a Simpsons comic and wanting to chat. I don't believe that I slept, but I had my eyes closed and I was resting for most of the trip. Ben played the Nawang Cechong Tibetan Flute CD that I grabbed when we left - music that kept me company when I flew back and forth from my postdoc in Boston in 1997, and something that was just right for the car riide today.

We grabbed some Hungry Jacks for lunch (I was ravenous), and Ben took me straight to the Holman Clinic, where I lay under a warm blanket on an examination couch while my rad onc dictated referrals for second opinions and other consults. He cracked me up by describing me as a lifelong heavy smoker - I have never, ever, smoked, or had any interest in doing so. It still makes me laugh to think of it.

From my bed, I could see the pre- and post-operative MRI scans coming up on his screen. A very satisfying experience, like a game of peek-a-boo. Tumour there, tumour gone. Tumour there, tumour gone!

The round black mass that had haunted me is no longer there. The brain that had been pushed to the side by the invading tissue has moved back to where it belongs.

The midline between the cerebral hemispheres is nice and straight, as it should be.

My lateral ventricles are bilaterally symmetrical, and no longer compressed.

The dark shadow of oedema in the right parietal lobe is much diminished.

It looks like a healthy brain.

It feels so good to write those words. My brain looks like a healthy brain.

I'm so happy, I'm crying.



I spoke with an old friend tonight, a neuroradiologist who looked at the scans for me before the first operation. I had left him a message asking if he thought it looked like a glioma, and he emailed me this response:
 I admit that Glioma was the first thing that flashed across my mind when I looked at. I didn't mention this for two reasons. 1) pre test probability of mets so much higher that it should have been a case of "uncommon presentations of common things being more common than common presentations of uncommon things (in this case two diagnoses) and b) diagnostic biopsy would be approached the same for both and c) enough anxiety about the abscess question without raising more uncertainty. I think proceeding on the basis of mets was the right choice. 

I asked him how long he thought it might have been growing there, as my impression was that it must have been there for a while, given the thickness and lobular quality of the vascular rim. Blood vessels don't just grow in an organised way like that in the brain overnight, at least not in my understanding of how things work. He said that given the size of the tumour, and the lack of dramatic mass effect and oedema, it's probably something that has been growing there for a number of years, and had only just made it's presence felt. Just like my breast cancer. A slowly growing tumour that eventually reached a size big enough to have an effect.

It's strangely reasuring to think of it this way. It helps me understand my longstanding "sinus" headaches, my sleep problems over the last few years (trouble staying asleep through the night, not feeling rested, which I blamed on co-sleeping with the kids), my chronic sense of fatigue and occasional mental lethargy. All year, I've been wishing they'd done a brain scan, not that I thought anything was wrong with my brain, but I just wanted one for completeness. And I was so fatigued. Just thought it was the chemo.

If my big GBM has been growing away for a number of years (it wasn't evident in 2001 when I was an fMRI control), then that explains why I managed to grow a second baby in the contralateral hemisphere. Those cells get around, they got around, and thought that the left occipital lobe seemed like a nice home. But we've got them out now, and the CT/RT combo will mop up the remainders. There could be other GBM cells in there, but 28 weeks of temozolomide should put the damper on them deciding to gather together and party.

I just have to be vigilant for any strange neurological signs, but we know  we have the tumours out.. And mine was slow-growing, albeit high-grade. You see, no-one knows how quickly these things grow. Once they get to the size and mass that causes effects, you can't look at the cells and say that it grew quickly - you can only say that it's an aggressive tumour type, and it's the luck of the draw as to where it was growing. Superficial and resectable like mine are better than deep and inoperable. The latter are going to be fatal, the former can be survived.

I'm talking without an evidence base here, of course, I'm not brave enough at the moment to delve into neuropathology texts, but I am speaking from what I've learned in listening to neurologists, neurosurgeons, neuropathologists, and neuroradiologists over the last 20 years. Some tumours grow quickly and cause gross oedema and mass effects, some grow slowly and take a while to have an effect, and can be treated if caught in time.

This isn't to understate the seriousness of brain tumours. They're horrendous things, stuff of nightmare, and shouldn't be allowed to exist.

I had my planning session today, where they made the frame for my head that I will wear for each of my RT sessions over the coming weeks. They asked me if I was claustrophobic (no), and I had to lay on a tray in the CT scanner, and they put a lovely warm frame over my face, it felt like having a facial. Once they were happy with how it fitted my head, they put cold towels on it to set it. I kept my eyes closed the whole time, so got a surprise to see what it looks like - I had been wondering how I was finding it so easy to breathe - there are plenty of air holes, and I'll be able to see.

The technicians explained that the RT will be given on the same linear accelerators as my breast cancer treatment, only this time I get to wear my head frame, which I can keep at the end. Patients do find the treatment tiring, and sometimes there can be skin changes, though not as bad as it was for the breast cancer, because this time they'll be aiming inside my head.

I've asked for morning appointments  again, so that I can rest up before the boys come home from school. It's going to be strange not driving, but I'm sure I'll manage with lifts from friends or Ben. Just need to get adequate rest, nutrition, and exercise. I'll make it through.

Overalll, the treatment will take 28 weeks, from diagnosis to end of chemo. The breast cancer treatment took longer from diagnosis to end: 34 weeks! So I'm telling the boys that we'er getting a six-week discount on time. 

I'm hoping that we'll be able to do nice things each weekend as a family throughout the treatment. I've already asked the boys to choose some friends who they'd like to see in the holidays, hoping that the kids can go off and have fun with their friends while I have my treatment and get the rest that I need.

It's good to have an end-point mapped out: I will be finished my treatment by the 11th of March 2014. Two very important family birthdays occur in that week. I hope both Elizabeth and Caroline will be able to be here so that I can celebrate their birthdays, and they can celebrate my end of treatment. Strange that the chemo nurses who rushed to see me today are called Fiona and Caroline - it's like my own little sisterhood of nurses (and makes remembering names easier). I told them it was good that I'd given the RT and CT teams their chocolates and thank you cards before I was diagnosed, so that they'll have to treat me extra specially well now. They laughingly agreed, and Fiona said they had been pigging out on the chocolates and felt terrible when they heard the news.

It was good to feel supported and engaged at the clinic today - though I was wondering how I would cope with the pity response. I'm working on a simply story - I had breast cancer and a couple of brain tumours, they're gone now. I just don't know how I'd cope with an emotional response from someone overwhelmed by the unfairness of it. I don't have the time or energy to indulge in that. Crap happened, we'e moving on. I'm going to do everything I can to enjoy every moment of this life, and to share that with my loved ones. I have a strong sense of faith that I will get through this and emerge stronger than before. It's just going to be a bit tiring.

Apart from my brain getting cut open and zapped at the start, I have a feeling this treatment regime won't be as bad as the breast CA was. No infusions of chemo drugs withe the accompanying nausea and  neutropenia. Radiotherapy fatigue will be out of the way at the beginning of the treatment (the first 6 weeks), did I mention no infusaports or infusions or IV antibiotics? Blood tests every three weeks only, to check for thrombocytopenia, a clotting condition, which can be treated.
  
We're seeing another oncologist on Wednesday for a second opinion, so it will be good to sit down and listen to somebody new. I'm going to try to be different for a different doctor - I feel like I'm always asking questions and making assumptions and jumping in and trying to work it out. It will take great self-control and discipline, but I want to just sit and have someone ask me the questions and tell me what they think.

As I have had more than enough cancer cells in my body this year, I hearby declare my body a camcer-free zone. The naughty bits have been removed, and they won't be growing back. Anywhere.

My radiotherapy face mask, to keep my head positioned perfectly.

the GBM treatment plan, and a healthy desire to shop!

I had a good talk to my rad onc tonight, and took lots of notes. Did I mention that he was the first doctor I met when I started at the LGH?  A friendly chap who I spoke to in a lift when I was going through an adminstrative hiccup over having the title Dr on my ID badge. They'd given me a brown-rimmed badge because I said my title was Dr, but I wasn't allowed to have a brown badge because they were only for the medical doctors. Allied Health professionals get green-rimmed badges, and no title.

I enjoyed the sardonic exchange with him, and frequently delighted in his sense of humouri, as well as the friendship of his wife, who is a remarkable and beautiful person. Ben also gets along well with both of them, and our kids are the same age. Part of me wants to keep him as my rad onc, because we have such a good rapport, and part of me thinks I should change, as he has offered, to another rad onc with whom I have no personal relationship whatsoever. I guess we'll make that decision in the next few weeks.

I hope to sleep well tonight. We drive back to Launceston tomorrow. I need to go straight to the Holman Clinic to get  measured up for my radiation (something about making a cast of my head). It seems that I will be able to have my radiotherapy there  because the surgeon took out my second, occipital tumour this last week. He mentioned having been dubious about doing it, but glad he did - there must have been some backroom chatter of which I was unaware. If the occipital lesion had stayed put, then I would have needed stereotactic radiotherapy, and that would have been in Melbourne. So, for all of you who were looking forward to the chance to catch up (albeit in less-than-ideal circumstances), I won't be flying over Bass Strait any time soon. But you're welcome to come and visit! We have plenty of room, I just mightn't be the most energetic host for a while

So, I will be starting 6 weeks of combined chemo and radiotherapy in 10 days time, at the earliest. Followed by six 3-week cycles of chemo alone (14 days chemo tablets, 7 days off).

Being someone who likes to have things mapped out, I sat down and worked out the dates.
I used to do it for uni, for work, for holidays. For our wedding (June 1998 buy house, August 1998, move in, October 1998, get married in said house). I work better with structure and dates laid out.

All being well, I will have had my last dose of chemo for my GBMs on March 4th, 2014. There will be MRI brains every two months after the combined CT/RT treatment. I'll get my right boob MRI'd in January, just to make sure she's behaving herself, but I think she's going to be okay. Only a 2% chance of breast cancer recurrence after the treatment that ended 4.5 weeks ago, but seems like it was on another planet.

It's going to be a long haul, but we will get through it. No neurtropenia this time around, just a risk of thrombocytopenia (beautiful sounding word, not something I want to get).

Best thing - no infusaports, blood tests only every 3 weeks, brain scans every two months. And if the GBM comes back, I'll drink some more Gliolan and they'll get it all out. But it's not going to come back, we are going to defeat it.

Things just seem to be lining up so neatly. A new hurdle arrives when we think we've finished with a major one.

Steroidss have made me zippy tonight. Need to rebut eyes and sleep again  before 2.5 hour drive home tomorrow.

I'm going to do some SERIOUS declutteiing when we get home. No more hanging on to things just in case we might need them, or because we've had them forever. There's too much stuff in our house, too much holdling on to old energy. So it will be Out with the sofa, arrmchair, and ottoman that we kept from previous owners of our house in Melvourne. Funky and and 60s yes, but we don't use it or  need it. It takes up space. Out with the suitcase of my classic late 1990 suits, with their long pencil skirts. I got much wear from from them from 1997 to 2004, but I don't need them any more. Heck, i need a new way to dress, now that I'm the bald Amazon from Lauceston (right-handed, left boob off). Xena, warrior Princess? Too much leather. Gabriel, her offsider? Too rustic. I'll find something comfy and me - long-sleeved linen tops, comfy capris, long skirts, scarves, and eminently sensible shoes for all the walking that will make me fit. No driving for at least 3 months. Lucky the hospital is i15 minutes down the hill. Probably 30 up again.  Out with the summer sandals I haven't worn for years. Out with all the old things from the old Fiona, who was holding on to old clothes out of sentimentality.. There's a new, comfortable Fiona in town.

All I need is the love and support of my family and friends, which already surrounds and sustains and nurtures me. Other possessions consume too much time and space. Aparrt from text books. I'm going to start devouring them, then sharing them with my colleagues. 

It's got to be a good sign, I'm interested in buying beautiful things to enhance our home. I had mo such desire after finishing my breast CA treatment. I will be ordering a very special armchair for our bedroom, it goes nicely with our new painting...and I do need somewhere nice to sit in my own bedroom...

Love and light to all, from the Infinite dimensions of my heart.

David, me, Nathaniel

Pride, falls, all that

I felt awful this morning. My head ached, it was cold here today, and the first day I've needed to wear a beanie since last week.

Having a cold head is very uncomfortable. Beanie feels better

http://www.ncbi.nlm.nih.gov/pubmed/20628665

This article is excellent, and should be required reading for all neuropsychs. Visual field defects are something we learn about in undergrad days, but it's purely abstract and intellectual, all about wiring. I don't think I've ever sat down with a patient and asked them what it's like to have a field defect, but in my largely diagnostic work in Melbourne, I didn't see many people with strokes or other focal neurological syndromes. And I can't recall any of the stroke patients at the LGH having field defects. If they did, it wasn't something I concerned myself with. Disturbances in cognition, memory, behaviour - they were the things that I prioritized, where I could make an unique contribution.

No, the only two patients I recall with field defects were an Aboriginal elder, who was able to drive with accommodating lenses some time after her stroke, and a young woman who had an homonymous hemianopia after resection of a meningioma growing in her left lateral verntricle. She described the defect as a nuisance, because it made her bump into things on the right, and she had been getting some nasty comments from elderly people in her small town. These stopped when she got her "vision impaired" badge and a cane from a support group. She wore the badge with pride, and spoke with glee about the potential of the cane to whack the ankles of any sour old biddies who might doubt her impairment.

I now know that in not talking to people about their experience of field changes, I missed out on potentially hearing about an incredibly fascinating brain phenomenon.

I was exhausted today, but found it very hard to sleep. When I lay down after lunch and closed my eyes, it was like the lights were still on. I kept seeing fleeting images in the lower right side of my visual field - the rest was quiet and dark. But the lower right was moving and spinning, all kinds of beautiful shapes. As I sit here in the dark, typing right now, if I keep looking straight ahead, a human figure stands and jiggles next to me. I can make it go away if I look directly at it - it's as if my brain is trying to make up for the missing data input by itself.  I'm glad I have a creative and friendly brain, the images it makes are pretty and fun.

For example, my cousin Stephanie was sitting in front of some yellow flowers, and it looked like a piece of gold wrapping foil appeared out of her hair and rolled itself into a ball next to her ear. Looking at magazines becomes beautiful - my mind creates little patches and patterns coloured like the images that are really there. Or when I am on the ipad or computer, the bottom filed looks corruy.ypted, like the screen is smashed or dirty. Right now, because it's dark, a shadowy man is moving his arm next to my bed - but it's only the arm of the chair. If I focus on reading with my left hemifield, all sorts of shenanigans are happening on the right - sometimes two characters. This afternoon, it was Prince Charles and Lady Di, dressed in the nude colour of the chair that was there in reality.

It all sound totally bonkers, I suppose, but I know I'm not hallucinating, it's really as if   my brain is trying to make sense of corrupted data, and doing it in an whimsical way. I almost enjoy the woman in the red skirt singing and dancing next to me right now - now a dancing baby has come and gone- though that part of the room is in blackness. Shift my vision, and the illusion vanishes.

Readig is effortful, though I can manage if I keep looking to the left. It's so much easier to touch-type on this little laptop that Ben bought me than it was to type on the iPad. The marks on the keys help me anchor my fingers, I can see the text coming up fine, and I don't have the strange experience of not quite being sure about the different punctuation marks. If I wanted to use a  slash, I have to look for it as it's not in my touch-typing repertoire. So I look.... and there it is under the ? - but earlier today it was difficult to know if it was the right position, or was the right symbol at all, like a kind of alexia for symbols - I also wasn't sure how to activate the other keyboard symbols.

I am, again, incredibly lucky, not to have had a worse outcome. The visual symptoms are resolving, and I will manage with what's left.

Vodafone are jerks

Vodafone are jerks.

They texted me last week to say I had gone over my monthly data cap, and that my service was at risk of being suspended. I rang and and explained my situation, and paid the $500 owing. Only to get another warning text today, because I've accrued another $200 in data charges in the past week. The plan resets on the first of the month. I asked what to do - they're blocked my net access on the phone, issued me with a $15 top up that will give me up t$80 worth of calls and texts until then, and have changed my plan from a $49 to a$65 one, so that I can make unlimited calls and texts in Australia. But only after october 1st.

I told today's automaton that her colleague should have told me about the date issue last week.  I had no idea they'd keep charging me as it was in the billing cycle. He, at least, was compassionate towards me when I told him the whole "oops, I've had brain surgery, was worried I was going to die" story,

I was in tears today to her, and she asked if I would like to have a glass of water!!! 

I've never so much wanted  to punch someone through the telephone line,

It gave me a chance for a good, angry, cry. To rage against the insanity of systems, of the inflexibility! Against the kind fool last week who did not explain to me what was going on.

She kindly said that I can wait to pay the outstanding $200 when my next bill comes. Yes, she would pass my complaint at the lack of proper communication on to her managers.

I told her I have been a happy and loyal Vodafone customer since 1999, have never had any complaints with them, and haven't even had much trouble with blackouts. Surely I deserve some special consideration given the circumstances I have been going through? "sorry madam, everyone knows that the plan only resets on the first of each month"

Well, I bloody didn't, and they should have explained it last week.

So if  I send you an SMS, please call me. I'm afraid to use my phone, which has been a lifeline these last two weeks.

Glad to have a 3G card in my iPad, hope it holds out until we get home to our nice new, freely installed FTTH NBN wifi connection.

Counting my blessings, and strange visual illusions

I am sooooooo lucky to be alive. Last night I heard two completely different GBM survivor stories.

The first story: a woman who was diagnosed 6 years ago, and who is still going strong, though with a bald patch on her head. Ben and Nathaniel don't agree, but I quite like having very short hair, so if radiation leaves me with bald patches, no biggie. I'll be the shaved-headed Amazon of Launceston (sans bow and arrow. My only weapon is love).

The second story:  a man in his middle years, head aches, mild visual changes, GBM in the basal ganglia (deep midbrain structures with reverently beautiful names like the thalamus, hypothalamus, caudate nucleus, globus pallidus). On of my first neuropsychology lecturers, Michael Saling, had a medical lecturer who told them it was "Tiger country. You cannot cross it with impunity." Surgery was attempted to debulk the lesion, there was a haemhorrage, the patient ended up in ICU. I don't know the outcome, or when or where it happened. But that's the kind of GBM that makes them so deadly.

My night nurse (where do they keep finding all these angels? I wonder if it's in their position description)  said that men get GBMS more than women, and that their outcomes are often worse. Don't know why. She said that some patients do just give up in the face of the diagnosis, agreed that the costs in the US probably add to the mortatlity rates, but said that we do everything we can in Australia.

Biziarre thing happening in my right hemifeld as I type right now - a little man is singing and danding aroudn in a slow circle. Has a good sense of rhythm!  I'm focussing on looking on my left hemifield and trusting my intact right touch-typing skills - it seems to be working well. Now the flesh-coloured figure has his hands behind his head, is scratching his chin, feeling his tie - stroking his nose - and disappears if I look directly at it. Mmm, interesting, there's a flesh-coloured chair over there, is seems my visual cortex was trying to make sense of missing data.

It's been  fitful night for sleeping. I can see things when my eyes are closed - not the hypnogogic hallucinations brought on by last week's sleep deprivation. This time its my brain trying to fill in missing details. I'm finding it ok to ignore it while I'm typing here  (thank goodness for this little macbook air that Ben bought me yesterday, I can feel where my keys belong on the keys) (good lord! is that Richard Nixon lying on my right arm? and someone walking to the window and back? It looks more like rubbery figrures of Prince charles and Lady Di in riding clothes - I never knew my visual cortex had such a sense of humour. Diana is reading my blog and talking to others - I wish they'd just keep still, I have serious words to write here!

So yes, fitful sleep. Midly febrile (37.6) and hypotesive (89/70) at 930. Slept 930-1130, then wide awake, had a good talk to night angel nurse, after even better talk to a friend in Sydney who I could see was awake and on Facebook! Slept again 1-2, after taking digesic and temazepam, bolt upright again. Felt like the room was moving, like part of me was getting up and riding a donkey down the room. Slept again 3-5ish, but then bolt upright again, feeling like I was jiggling in bed. I wasn't.

I've been for a walk up and down the hall. Legs feel strong, but gait feels unsteady. Definitiely the Wrong Trousers, and they've gone wrong. My angel has written me down to see the physio today (right pheriperal companions doing a slow boogie dance while I write. At least they're happy).

Will I have to deal with this visual disturbance for a long time?

who knows? It's only early days yet, though I'm not impressed with what looks like a giant turtle head or Dr Seuss creature where my right arm is typing. It's probably going to be temporary, if there was a bad field loss, I'd not be able to see anything at all on the right side of space. Now it ranges from looking like a broken ipad screen through to these fully formed 3D illusion...

Sleep is coming back, time to grab my pillows and jump through the window Wish me luck in Neverland

PS if you haven't already, please subscribe to blog updates via email, there's a widget on the side of the blog. That way, you'll get my posts straight in your inbox, and I won't feel the need to share links to each new post on Facebook. I will be busy for the next few months, and this will allow us to keep in touch without me having to announce new blog posts on Facebook, which I'd rather not use as a town-crier facility for life's dramas. I want a quiet, healthy, happy, life from now on

Day two, craniotomy 2

1am

I'm mobilizing ok, legs felt strong, but wobbly last night - a little like the Wrong trousers in the Wallace and Grommit animation. I never thought I'd get a chance to experience neurological dysfunction first hand, the things some people do for science!

My nurse walked beside me, worried that I might fall, but apart from seeming slightly pneumatic, my gait was fine. I put myself to bed to assuage her anxiety about fall-related paperwork 

530

Wide awake

730

Ravenously hungry. When will breakfast come?

8am

Feeling tired, Need to sleep.

9am

Having a quadrantanopia is rather disconcerting, I keep getting vertigo, which is forcing me to stay in bed, like I should be! 

I needed some ondansetron  and maxalon for motion sickness. Then I lay in bed and rested with my eyes closed, pretending I was in a sublimely comfortable first class seat on the way to a tropical paradise.

A dear friend came and visited, with the most beautiful-smelling flowers from her garden. It was a joy to hear her recent stories, and to be treated to a hand and foot massage (mmmm)

1230

Lunch

Still feeling ravenous. Devoured everything off the hummus wrap. Had a shower.Tried to sleep, lay in bed, room spinning, heart pounding. Stemetil and Valium helped, until Ben and then boys came after 3.

4 

Nice long visit from my cousin Stephanie, great to hear about her recent trip away. Even better to be hearing about other people's stories again. Far more entertaining than mine!

730-830

Visit from cousin Chris. I could see both her eyes when I looked at her!

All day, I'd been unable to see people's left eyes. Now I can even see mine in the mirror! So the field change is resolving quickly! I'm not sure that i can see my right hand as I type this, but it's Betterr than it was.

11pm

Time to sleep 

355am

Faces look good, lower right quadrant looks like someone has partially peeled off d grey sticky screen saver. very strange, 

I'm ravenous again!

While the diagnosis and pathology are a shock, I'm feeling remarkably well, and lucky that I had superficial, operable tumours. Ben and I are now researching all that we can about GBMs, and possible treatments that may help in addition to the standradical combined chemo and radiotherapy. I plan to be a long-survivor of this condition, which doesn't have rapidly fatal consequences for every single sufferer.

Tall ships in Hobart