Happy day

Whoo hoo! I finished radiotherapy today. The sense of relief is like completing HSC, Uni exams, my honours thesis, and my PhD rolled into one. No more cancer, no more radiation, just rest, exercise,  healthy diet, and a few

Cycles of low dose chemo to go. The next half of my life begins today :)

Two zaps to go

Sunday 550 pm, sorry it's been a while, I've had a very sleepy week. My neutrophils finally returned to normal on Thursday, and I've managed to get through this neutropenic episode without getting an infection, or at least a temperature that would have seen me back in Emergency. My temp did get to 37.5 at one stage, but went back down after I packed a bag just in case.

A few of you have written lovely long emails, which I haven't had the energy to respond to - know that it's wonderful to hear from you and your thoughtful responses to my blog, it's good to know who's out there. In response to one question, the fatigue has been pervasive and different to what I felt during my breast cancer treatment. I didn't need to sleep during the day so much then, except when I was in hospital with neutropenia, when a brief morning and afternoon nap sufficed. Since the initial exhilaration of having survived surgery for two brain tumours and the corticosteroid-induced sleeplessness and high energy of the first month after sugary, I've had waves of fatigue come over me, which I've sometimes foolishly resisted, and later paid the price with increased irritability or fatigue the next day. I find it very hard to sit or lie still and do nothing, apart from compulsive reading, which isn't really resting my mind.  I don't watch much television because it is inane rubbish during the day, and I've started to take great delight in muttering comments back to the morning presenters while I wait for my treatment in the Holman Clinic (mutters facilitated by the presence of my cousin Caroline, who helps it become a very funny experience).  I'm loving the Dragon Riders of Berk series on the ABC, and am very excited to find that there are two series on YouTube, so I guess if I get the right kind of programs (funny fantasy or science fiction), I can lie down and watch TV to rest.

There's still the problem of wanting to de-clutter the house, and not having enough energy to do it. I am motivated to do it because I feel a strong sense of stagnant energy from the accumulated clutter in our house (books, papers, boxes in particular). When we visited my cousin's yacht in Hobart, I could see the appeal of going away with only the things you absolutely needed, as there is no room on a yacht for extra things. If I could wave a magic wand and make everything that we don't need disappear, I'd be very happy (thanks, CL, for that idea). From reading my old Feng Shui books, if improving the flow of energy can make a difference to people's health and relationships, then I'm very keen to do it. I know that Feng Shui may sound like superstitious nonsense to some, but I've been interested in it for years as a lot of the principles make intuitive sense to me. Like having a bright and welcoming entry to your home, and not having accumulating unused or broken things, or clutter (are you seeing a theme here?).

I was stressing about the lack of progress on decluttering yesterday, and Caroline said something very wise and helpful: "There's no hurry. You've got all the time in the world to do it. Once your treatment is over, you'll start to get more energy back, and you'll be able to do a little bit more each day." Ben managed to clear out a lot of clutter from our back hallway (shoes, bags) today, Caroline cleared off the dining-room table (a magnet for papers) and Ben found a blue birdbath that looks wonderful in the garden outside our kitchen.

Caroline knows me so well, she sensed that I fear there is some deadline to do all this, that tidying up the house and getting my affairs into order is an important thing to do. It's good to have her remind me that the most important thing I can do is look after myself, get the rest that I need, and not feel annoyed with myself for not having the energy to do the amount that I used to be able to do. I have all the time in the world. I am going to get through this. 

If anyone has looked up GBMs and been a bit put off by all the negative data, here's a great website that should give you hope.
http://www.sarahmamalai.com/

Sarah seems like a soul-sister to me, and I hope she's continuing to live a recurrence-free life. The fact that the webpage is copyrighted 2013 gives me hope that she is.

As for how I'm faring, I'm feeling tired but rested after a pyjama day at home. It's been cold and blustery all day, the kind of day I've always loved for staying inside, reading, pottering around, relaxing. Today was a little different to those kind of days from my childhood, given that I slept from 1030 to 230 last night, found it hard to go back to sleep because my head was stinging from the cold (despite merino beanie capped by crocheted beanie topped by yoga pants grabbed in the dark, a very attractive look), my shoulders were aching,  there's a niggling discomfort in one of my upper teeth that won't go away, and I couldn't remember when I last had panadol. I think I got back to sleep from 330-530, then the birds and David woke me and we got up to watch the 50th anniversary special of Doctor Who (loved it!). I slept again from 1030 to 130, a deep sleep where my body felt like a heavy log, I was having dreams, and the sound of the boys laughing as they played was a welcome music in the background. I would have kept sleeping, but for the irritating need to go to the loo, and the understanding that I should eat some lunch and take my midday medications.

The boys played beautifully today, lots of laughing, no fighting. The routines and consequences that I've been putting in place are working well - for example, they can't play an electronic game until they've showered and dressed in the morning. They can only play for 30 minutes in the morning or afternoon; if they don't stop before or at the allocated time, they lose playtime in the next play period; they need to read or do chores before they play in the afternoon. Whining, pleading, yelling, and other unpleasant behaviours intended to help them get their own way get counted using the 1-2-3-Magic system, which is resulting in impressive results.

I have much more to say in my head, but need to rest now. Take care, and keep in touch.X

Don't get down over median survival times, the data is skewed!

I've been composing a post in my head for the last week or so about the excessive use of median survival times in nearly everything you read about GBMs. For any of you without a knowledge of statistics who have read about my condition, I am really sorry that the medical literature isn't a little more hope-inspiring.

In fact, I'm quite angry that there aren't enough patient-oriented sites that overcome the pessimism and despair that the medical literature probably engenders in people who do not understand statistics. The excessive use of median survival times when talking about cancer probably contributes to depression and hopelessness in patients and families, at a time when they should be fighting with all their might.

To put it simply,  the median (where 50% of the population falls) is not always the same as the mean (average). So if 50% of people with a certain diagnosis die within 3 months, then 50% do not, and some people may survive for many years later. We call this a skewed distribution, and in my extensive reading about GBMs, being over 60, having an inoperable tumour or one that can only be partly removed, being physically unwell, and male makes someone more likely to be in the first 50%. Many people die because their tumours are caught too late, or are inoperable, some older patients are not even offered surgery - this data shouldn't be used to create outcome data for all people with GBMs, as it will give an overly negative impression for younger patients and those who have surgery.  Ideally, the outcome data should be stratified by age, gender, health status, location of the tumour, extent of surgical resection (full, partial, incomplete), type of treatment given, and should note the duration of the follow-up studies. It's a highly complicated issue, and all patients and families with any kind of difficult diagnosis, like mine, should be able to access educative and hope-inspiring resources, rather the misery-provoking wasteland that's out there.

Luckily, there is an essay by Stephen J Gould that is fantastic, and saves me writing my own. If you don't want to read the whole thing,  I'll quote a couple of excellent passages from his essay here, in the hope that it will give you hope for me.

cancerguide.org/median_not_msg.html‎ 

Gould was diagnosed with intestinal mesothelioma and survived  20 years, despite the median survival time in the literature being only 3 months.

"Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.
…
"The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.
…

"When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

"Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

"The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

O"ne final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age."

the restorative powers of sleep

I'm feeling better tonight after getting lots of sleep from Friday to this morning - even started to dream again! (funny ones, too :-)

My neutrophils up from 0.1 last Wednesday to 0.2 today, so I qualified for a GCSF injection to boost them, as they've been down for so long, even though I haven't been taking my Temodal since Thursday.

I'm very proud that I haven't developed an infection with almost no white blood cells, but I suppose that staying in bed, at home, has been a good strategy. I really didn't have the energy to do much else, and felt quite pathetic. It was humbling and surprising to see how lacking physical energy affected my ability to stay optimistic - I admire anyone who manages to continue on with a chronic illness or chronic pain. It is so debilitating to feel like you have no energy left, and to fear that you won't regain it. I confess I've been a terrible scaredy-cat at times over the last few days, I was worried that my lack of energy might mean I was going to die, so it's really good to have rallied and to feel my energy building again.

Strangely enough, just like after my surgery, I have an overwhelming urge to do further decluttering in our house - the excess of papers and other unimportant things upsets me. I want my environment to be simple and to only have the necessary things, nothing that's being kept just in case it comes in handy one day.

My hair is going to come off very soon, it is looking ridiculous (the spirals have gone, and there are just tufts of hair left). I'm kind of glad that it might never grow back evenly, I don't think I could cope with fluffy curly hair.

Thanks to everyone who has sent messages and emails. I might not be up and about much, but it's nice to be in your thoughts.
xxx

Neutropenia, again

Well, at least I'm consistent. I'm excellent at becoming neutropenic when the doctors say I shouldn't. I was early with my neutropenia on the last three cycles of chemo for breast CA, and people don't usually become neutropenic on Temodal, my current chemo drug.

I've spent most of yesterday (Friday) and today sleeping in bed. My body feels utterly drained of energy (it's an effort to lift my arms, I feel weak and floppy), and I don't have much of an appetite, though I can eat if I put my mind to it. My bloods on Wednesday showed that my neutrophils were down to 0.1, so I was told to stop taking my Temodal, as it's the only chemotherapy I'm on, and it might be suppressing my white blood cells, though it shouldn't.

I had my RT as usual on Thursday and Friday, and asked on Friday if I should be having my bloods done again, but the nurse, who I hadn't seen before, said no. We got a call at 430pm saying that I should have had them done, and could we come down before the clinic closed to do it. Lucky we live only 10 minutes away, and I have Caroline here to drive me. My bloods haven't improved, but I haven't spiked a fever or developed any other signs of infection, so I'm hoping I'll be able to avoid going to hospital for this neutropenic episode. It's much more pleasant to be at home, apart from having to deal with the kids fighting, and Ben getting anxious that I need to get up and go for a walk so that I don't get blood clots, when the only thing that gets me out of bed is the desire not to wet it. I have never felt so feeble in all my life. When I woke up after sleeping today, I wasn't  sure what day it was, or if it was morning or afternoon. At least I know the year, month, and season, and where and who I am, but it's disconcerting to be disoriented to day and time, however temporarily.

I've had some pretty low moments over the last couple of days - feeling so drained of energy makes me realise how much I've generated my sense of hope and positivity from some inner store, and it's hard to get in touch with it at the moment. There's still an ember burning away, and the best I can do is sleep when I need to, walk for short distances outside when I can (once a day) and rest and enjoy the quiet company of family and friends at other times. Pushing myself too hard, or being afraid, is counterproductive, I simply can't do everything I could before. I need to focus on resting and recovering from this 10-month assault on my body.

In January, I described my forthcoming treatment for breast cancer as a surgical strike that would be followed with chemical and nuclear warfare. I had no idea that there would be a second enemy hidden deep within my central command centre that would require two surgical strikes and combined chemical and nuclear warfare, plus a third mopping up with chemicals, just in case. My knowledge of military history is gladly insufficient to allow me to identify a battle of similar stages, but I feel that I have been through a terrible war, and that it will be good to apply the soothing balms of love and peace very soon.

Ironically, my hair, or what is left of it, is growing back thicker, darker, and curlier, than ever before. It could have been fun to have dark spiral curls, though it probably would have driven me mad. Unfortunately, it only covers the back left quadrant of my head now, and will need to be clippered off soon. Even my low level of vanity has limits. I will then become a bald woman, which will make me very easy to identify if I pursue my desired new career of advocacy for people with brain disorders. Nothing like standing out in the crowd.

There are a number of people with different kinds of cancer or brain disorders who have blogs which are public, and which are used to advocate for people with those conditions. I've thought about doing that, and part of me is in conflict about making this blog public now, as I'm told it would be helpful for people going through similar experiences. I have made it private because the initial intention was to help keep friends, family, colleagues, and others updated on my progress. It has been therapeutic for me to be able to write here, and knowing that it's private has allowed me to write more freely than I would if it had been publicly accessible. If I made it public, I would need to edit it, and I don't have enough energy to do that at present. Once I'm stable, I'll start advocating. At the moment, I'll just work on getting better.

Please don't worry about me. They say that the final weeks of brain radiotherapy are the hardest. I'm still here, still very much alive, feeling loved and cherished by so many people. I'm grateful for your prayers and good wishes, and wish I could sit down with every one of you and have a cuppa, or at least a chat on the phone. I just need to get through this last bit and I'll be feeling better. After next week, 3 weeks without chemo to work on diet and exercise, and then the final push. I'll get there.

And in case you're interested, I found that there are two kinds of GBMs: primary and secondary. Primary GBMs are more common in men aged over 50, and are more aggressive. Secondary GBMs arise from astrocytomas or other glial tumours, and may have better outcomes. So if my tumour was growing back in 2009 or earlier, then it may have been a lower grade tumour which changed into a GBM. Still not great, but better than a primary GBM. I'll do some more reading on the marvellous internet, when I get the energy.

Wishing you all love, peace, and health.

Dexamethasone, side effects, and fighting on when you feel utterly drained and like crap.

I've been on Dexamthasone since my dramatic MRI scan on September 4th. It stopped me from sleeping for the first month, the dose was tapered down from 4mg 3 times a day (tds) to 2mg in the morning, and 1mg at lunch until I had the seizure, then I was back on 4mg tds. I'm back on 2 and 1 mg again now, which is possibly why I'm sleeping better, but I seem to be getting an awful lot of the side effects listed on the mayo clinic website.

I'm going to select the symptoms I've experienced, just because I'm obsessional and like lists. I'm also on a lot of other medications, which can produce similar side effects, so the side effects are  probably not all due to the Dex, which I need to take. It helps to avoid cerebral oedema and raised intracranial pressure, which can, in the tenth Doctor's words, be "extremely very not good." Signs of raised ICP include nausea, vomiting, and double vision. If I get them, I need to tell my rad onc, and he'll probably increase my dex dose again.

Side Effects

Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur:

More common

• Agitation
• Anxiety
• Blurred vision
• Dizziness
• Headache
• Irritability
• Mood changes
• Nervousness
• Numbness or tingling in the arms or legs
• Swelling of the fingers, hands, feet, or lower legs
• Trouble thinking, speaking, or walking (mixing up words in my case)

Incidence not known

• Decreased vision
• Dry mouth
• Facial hair growth in females (light hair on sides of face)
• Fatigue
• Full or round face
• Heartburn and/or indigestion 
• Increased hunger
• Increased thirst
• Increased urination
• Muscle pain or tenderness
• Muscle wasting or weakness
• Nausea
• Pain in back, ribs, arms, or legs
• Sleeplessness
• Trouble sleeping
• Unusual tiredness or weakness
• Vision changes

Incidence not known

• Thinning of the scalp hair

Yippee! So many fun experiences! I'm so glad to be relatively healthy, and young. The list sound awful, but I don't experience all of them all the time.

 I do, however, finally understand something that used to mystify me: why some family members with cancer didn't  report new symptoms to their oncologists (symptoms which always signalled problems, otherwise I wouldn't have learned of them).I suspect it's because they just didn't  want to have to undergo more testing, or more hospital admissions, or have more bad news. Denial is a great defence mechanism, unless your health is on the line. But how do you help someone who has been fighting a chronic or life-threatening illness to be keep on identifying and confronting potential threats? I'm so exhausted, and feel so unwell today, it was hard to text my oncologist for advice, but it's not just about me. I need to keep well for David and Nathaniel, which means being vigilant about my health, risking looking neurotic at times, and getting a balance of rest and exercise, and time with family and friends. Something I've been neglecting lately, not that I've wanted to.

PS. My oncologist responded to my test by saying that my neutrophils are down to 1.2, so I need to check my temp every 6 hours, stop taking the Temodal, and follow the same precautions as before. So it's not just in my mind :)

a better day, and an apology

I'm feeling guilty now, after last night's self-pitying post. I've had a number of lovely messages that have made me feel connected, and less like I am writing to a void - I was not trying to make anyone feel guilty - I'm as much to blame for not calling or contacting you. There are so many people I think about who I don't contact regularly. We all have busy lives with family, work, and other commitments, and I don't harbour any resentment against anyone who hasn't been in contact.

It is great to know that there are some people out there, still reading - thanks so much for making contact. I don't get out much these days, and I feel a little like I'm performing an improvised solo act on a stage with the lights too bright to see how many people are in the theatre - I don't like doing solos, especially improvised ones,  and I'm not sure when the performance will end and I can return to normal life. Taking part in an unscripted and unwanted drama is not my idea of fun, probably not anyone's. I just have to make the best of it.

It would be much nicer to be part of the MSO Chorus again, singing a well-rehearsed and magnificent piece like Bach's Singet Dem Herrn (which we did at the Melbourne Recital Centre and Sydney's Angel Place in 2009), under the direction of an inspiring conductor like Jonathan Grieves-Smith. It was so uplifting to sing, I always wanted to start it over when we finished. There are lots of versions on youTube- make sure you listen to all three parts. The first is sweet and cheerful , the second is a delightful fugue, and the Allelulia was so much fun, I never wanted it to end. I hope JS Bach knows how much joy he has brought to the world.

So tonight I prepare for sleep, my face feeling stretched from the Cushingoid effects of dexamethasone, which will be weaned off when I finish my RT in just two weeks. Hooray! I've looked up the effect of Dex, and I seem to be experiencing nearly every one, apart from osteoporosis and shortness of breath. At least it's only temporary, and if I get cataracts, it's a simple operation. I have to laugh about it all, or I'd be bloody depressed. I am so glad to be alive, to have the care and support of everyone who is treating, seeing, or even thinking of me, and I hope that I'll be able to use this whole experience for the greater good - achieving my lifelong desire to help people better understand brain disorders, but not in the way I imagined.

Wishing you sweet dreams and love, wherever you are.

Scintillating scotoma

I found this today when trying to explain my visual changes to mum. The animation in the third image under Presentation is a lot like what I see

http://en.m.wikipedia.org/wiki/Scintillating_scotoma

My pattern is different though- it's the Widmanstätten pattern 

http://en.m.wikipedia.org/wiki/Widmanstätten_pattern

and it's in the right visual field. 

So that's what my sparkly scotoma is called - scintillating! It is due to the damage to my left occipital cortex from tumour being removed, is present all the time, and is not associated with migraine.

It's nice to be scintillating at something ;)

3am blues

In an effort to sleep better, I tried something different last night. I banished my apple devices from my bedroom, read a book by electric light, and stopped when my eyes grew tired, at about 930. I went to sleep straight away, and woke in the last hour. 930-230. 5hours continuous sleep. Better than snatches of 2 or 3, and if I returned to bed now, I might get another 2 hours before the boys come for their morning autopilot cuddles. But the reason I'm blogging now is the reason I'm out of bed - I'm feeling so alone, waking in the wee hours, and it troubles me. 

When I'm reading other people's posts on Facebook until 10 or 11 at night, I feel connected to others, even just through knowing what they're doing and seeing the parts of their lives that they're sharing. Not doing that last night has made me aware of how I'm getting less contact from people who were contacting me regularly when I only had breast cancer. Now that I have had a grade IV  brain tumour, things are different, I get that. People who were able to kindly share their own experiences with surviving breast cancer probably feel they have less to offer. My neuropsychological colleagues are probably in shock, because this is the worst kind of tumour, the one we all fear, the one we don't want to learn about because it might be tempting fate, the one that makes neurosurgeons and neurologists drop a tone in their confident exuberance and take on the manner  reserved for very serious diagnoses.

May I repeat, I am not my diagnosis.

I have had two tumours removed from my brain, I am having treatment for them, I am going to fight as hard as I can to stop them recurring, and I am very much alive right now. I need to sleep a couple of times during the day, I'm irritable at times, my body aches in the knees, wrists, and ankles, my legs and arms feel like jelly, but this will pass. There are only 10 radiotherapy treatments left, then 3 weeks off to recover, then 6 cycles of chemotherapy (5 days on high dose Temodal, 21 off). My bloods are behaving right now, people say I'm looking well, and I'm making more dietary changes that should banish cancer from my body.

I need to figure out how to feel connected to others again. It seems pathetic to be awake at 3am and feeling miserably lonely, though part is a fear that people find my diagnosis too hard to deal with, and are avoiding me because of it. There's also the problem that a lot of my social interacting has been via email in recent years, and I haven't been a good correspondent lately. I know the truth is that people are probably giving me time to get through the treatment, or busy with their own lives, or sick of my blog. If you're reading this, and have the time, please send me a email, just so I know you're there. I might not be able to send a lengthy reply, but it will help me feel less alone.

I'm trying to make the most of each day, enjoy it to the full and all that, it's just hard to do it consistently, and I miss the people I used to work with and interact with regularly. Old neuroses that they're avoiding me because they didn't really like me anyway are surfacing, which means I really should go back to bed and get some more sleep. Things will be better in the morning.

Something poignant found while cleaning up my Facebook profile

a good day with mum and dad.

29 January 2011 at 23:20

PublicFriendsOnly meCustomClose FriendsFamilySee all lists...NeuropsychQueen's UniversityvuUniversity of Melbourneclose friendschoralesvhmqueensschoolFamilyQueen's College - The University of MelbourneSt. Vincent's HospitalLaunceston, Tasmania AreaLaunceston Church Grammar SchoolDHHSAcquaintancesGo Back

I had a lovely few hours at home today, uploading songs for mum while dad sat in his wheelchair, while I played some of his favourites for him ('night and day', 'unforgettable', and 'jeepers creepers' being a few of them. I love them too). He seemed a lot calmer than usual, and seemed to just enjoy sitting silently, watching me work at the computer. The thing that melted my heart, though, was him telling me I had beautiful hair - the first compliment I can remember him giving in a very long time. Compliments didn't come easily to him, though I always knew he loved me, that was one thing he told me regularly.

Make sure you compliment your children regularly, and tell them how proud you are of every good thing that they do, and express your delight in the simple joy of their existence. Probably wouldn't hurt to try to be similarly appreciative to your significant others as well....

Found this nice photo of mum and dad from 2006, 2 years after he was diagnosed with normal pressure hydrocephalus. I'm so glad we had him treated, it gave us 6 extra years of having him at home. And although it's hard to see him declining, I'm so glad he's still around to love and cherish.

HDB and NLB on their 40th wedding anniversary, 2006

Pyjama day

925pm, Saturday 9th November.

I'm sitting up in bed, after a mixed day. I slept well, David and Nathaniel on either side of me again (Ben was in Melbourne for a conference, I'm afraid to sleep alone after having had the seizure), but sleep was also enhanced by having deliberately left my phone and iPad in the kitchen, so there was no opportunity to engage in my compulsive reading activities. Yes, I know, I'm blogging now, but it's therapeutic for me, and there's things I want to write. It will help me sleep…

I have 11 RT sessions to go - 5 next week, 5 the week after, and one the week after that. My last Full Blood Counts (taken on Monday) were fine, so maybe all the vitamins and herbal supplements I'm taking are making a difference. My dose of Epilum is nearly down to 500mg twice a day, & I'm on 500 of Keppra, and I'm feeling less sedated than when I was on 1000mg of Epilum twice a day. I just get very fatigued, and find it hard not to get cranky if overstimulated. It's so hard to try to stay calm with kids who are just being kids, testing your limits, pushing boundaries, when part of your is worried that you mightn't get to see them grow up,  and you don't want them to remember your losing your temper with them, which you're more prone to do because your fuse is so much shorter.

Of course, no parents are perfect, and I'm not beating myself up about that, it would just be easier if my kids were perfect! I'm not making excuses for them, but they've had a difficult year - coming to Melbourne with me in January for my diagnostic tests, seeing me in hospital with tubes coming out of me after my mastectomy, seeing me go to emergency and have needles stuck in me 6 times during my breast cancer treatment, and being admitted 5 times, having me in hospital for Mother's Day and David's birthday, then getting the brain tumours and having to have two lots of surgery for that, having a seizure that saw me back in hospital, and now going through combined chemo and radiotherapy that has made my face puff up like a bull-frog. I'm surprised they're not acting worse than they are - poor things have every right to be anxious.

Establishing routines, chores, and clear boundaries/consequences seems to be helping with the boys, but sometimes, especially when I'm alone with them, it's easiest to let them play on electronic devices just so I can get a nap. Unfortunately, then we end up with hyper-stimulated kids who have a boss to fight or who don't want to finish at the allotted time because they have some quest to finish, and I'm the bad guy who let them play the devices in the first place, so it's all my fault that they're being difficult. At least they seem to be responding to my new strategy: I tell them that if they turn off before the allocated time (10 minutes away), then they can play again tomorrow. If not, then I'll hide the devices and they can't. It worked tonight.

From my side, part of me is coping okay, trying my hardest, part of me is scared. I realised today that I'm afraid of being alone in case I have another seizure. All those years of working with epilepsy patients at St Vs, and I never really got it. Having a seizure is really scary: I lost control of my body, I could feel it happening, and afterwards I couldn't recall everything, and all my neuropsych knowledge added  layers of risk - people can   choke on their own vomit during a seizure, or can die (Sudden unexplained death in Epilepsy phenomenon, or SUDEP).  

That's unlikely to happen to me, I've only had one seizure, probably because I took a double dose of Valcyte the day before.  But part of me is afraid that it might, and I'm worried that stress will lower my seizure threshold, despite the anticonvulsant medications - i.e., that if I get too stressed, or sleep-deprived, I'll be more likely to have another seizure, and seizures beget seizures. People often curtail their activities because of fear of  seizures - though not being able to drive and my general fatigue stops me going out pretty effectively. I need to stop thinking about all the things I know, all the risks, and start doing things that can reduce the risks.

I have been confronting my fear of seizures by having at least two naps a day, one after breakfast, one in the afternoon, and sometimes one before lunch as well. I start the naps by doing a progressive relaxation exercise to a great app called calm.com - the sound of heavy, steady rainfall helps me to relax and fall asleep very quickly. If I don't nap for too long, it doesn't disturb my nocturnal sleep too much, but I can feel that it's getting late now and I need to take some paracetamol and get to sleep (it's now 10:14). My head aches all over, my face feels tight and puffy, and it will be nice to turn off my thoughts and succumb to sleep. I feel so much better when I do.

Tomorrow the boys will ride their bikes if the weather is fine, and I might get my remaining hair clipped off, though it's so soft and curly, it would nice to keep what remains. If my hair doesn't regrow over the radiotherapy site, I'll be bald for the rest of my life - I don't have the gumption to go with a weird half-bald hairdo, unless it grows in some beautiful sculptural shape. And then it would have to be very short, and I wouldn't like people to stare. I always liked Sinead O'Connor's bald look from 1990. Damn! another case of careful what you wish for… But hey, I also liked her gutsy song, Troy, from The Lion and the Cobra - particularly the chorus: "I will rise, I will return, the Phoenix from the flame." I will get through this. It will not destroy me. I will rise and live each moment as fully, calmly, and mindfully as I can, so I can be a good mother to my boys, and maybe a voice for people with brain conditions and their families. I'm starting to focus my energies now.

During my month of sleep deprivation after the brain tumour diagnosis, when the high dose of steroids prevented me from snatching more than 1-2 hours of sleep a night, I had the most amazing experiences where my body was asleep, but my mind was wide awake and felt more clear than it ever had in my life. I felt I could see across time, space, and all eternity, and gained a deep sense that life is beautiful, that we are created by a divine golden light of love that unites all of us, and that this love binds us together across time and space and all dimensions, and our existence doesn't end when our consciousness leaves our mortal bodies. Love, in short, is the most powerful force in the universe, is the source of all life and awareness, and It gave mefaith that I will get through this, that I will be able to do some  good from this experience.

Of course, some people may think this is all hypomanic, euphoric, steroid-induced thinking, or that a month of sleep-deprivation on steroids was like taking recreational drugs. You're possibly right, but maybe we're both right, and my experiences are legitimate, and that I'll be able to do some good from them. It's certainly been a transforming experience, and the sense of being able to see love stretching across the universe as this beautiful, all-encompassing love, is something that fills my heart whenever I summon it to heal, cure, and protect me, and to protect everyone I love, and also every sentient being, so that all fear, hatred, and suffering might be gone.

Time to sleep.

The fascinating effects of cranial irradiation on hair growth, and ofsteroids on faces.

Post-chemo hair getting long between first and second craniotomies. Pose inspired by having had my right jugular vein accessed twice, once for each surgery, as if I'd been bitten by a vampire. The anesthetist said it was too early for Halloween (6 & 18 September 2013) 

Hair starting to grow back after meeting the #1 clippers in the first week or two after craniotomies

Dex face developing

Post-RT golf-ball face (caused by dex face under RT mask, 14/10/13)

Sorbolene protects skin and makes interesting curls..

Could almost get used to this hairstyle, if it would stay put.

Starting to thin (25/10/13)

Getting weird

Getting weirder

Smooth as a baby's bottom. Not sure about the sideburn.

Nathaniel's 9th birthday - 7 November.

22 out of 34 RTs down, 12 to go. I'm not wearing this look out in public - too cold,  my hair blows away, and I'm not allowed to let the sun on it. It's also probably a bit too radical for Launceston ;)

I've been feeling extremely tired, and find I need to nap up to 4 times a day. Short naps (30-60 minutes are best). My body feels like a rag doll, very weak and wobbly, and I need to be careful when moving from sitting to standing (nearly rammed my head into a toilet door on the weekend). It feels great to walk on level ground. I tried walking without my fore-arm crutch the other day, but felt like I was wobbling like a drunkard. Using the crutch gives me something to lean on when I'm tired, which is better than leaning against a wall, and also causes people to give me a bit of space when I'm walking, though I get funny looks, possibly because of my age, lack of obvious gait disturbance, or general amusing appearance.

almost looks deliberate.

My radiation oncologist may be a frustrated artist. 

Sleep, routines, music, and friends

I'm feeling relaxed and rested tonight after a lovely day where I caught up on sleep, ate well, and had a few short walks on flat ground where I was able to set a brisk pace and really enjoy feeling my legs moving. A big improvement on yesterday where I felt like a rag doll, nearly launched myself headfirst into the toilet door when I tried to stand up at the kids' school, and needed to hold Liz's arm as we walked up the road to where we'd parked the car. Sleeping for an hour before lunch, an hour after lunch, and two hours before dinner have made a huge difference.

Having the pantry half-emptied and rearranged also feels good, as does having the boys into a better routine - they're eating ravenously with all their trampolining energy expenditure, and going to bed quite happily. Ben took them bike-riding today (and realised he can leave the bikes on that car permanently, as we don't need to use it at other times, now that I can't drive).

Liz (my companion from Wednesday until tomorrow) and I went to the Harvest Market today and picked up some lovely fresh produce for breakfast tomorrow, and then I went to Judy's Body Fashions and finally bought my first silicon breast prosthesis and bra ($429 for the former, claimable on Medicare; the bra may be claimable through my private health insurance). I tried out a few different silicone prostheses, none of them sat exactly the same as my remaining boob, but no-one is perfectly symmetrical anyway, and it's better than undergoing surgery to have a reconstruction. I want my body left in peace. It turns out that Judy, who owns the shop, went to school with, and is best friends with my cousin Keverell's wife Elaine - Tassie is such a small place, it was lovely to meet her.  Makes me realise I need to see my extended family more often, they're lovely too.

My old workmates at St Vs in Melbourne sent me two tickets to see David Helfgott in concert at the Princess Theatre on Thursday night - Liz was a willing companion, and we thoroughly enjoyed the performance, seated right in the middle of the second row in the stalls, where we were able to hear him talking out loud - "crescendo", "more intense", "this is a hard bit", "my hand is nearly falling off here" - it was so wonderful to see someone enjoying making music so much, and he is so talented. I can plod things out on the piano, but could never play anything as well as he did. We were seated next to a couple with very short hair who I had noticed going into the theatre before us. It turns out that she had an astrocytoma removed 4 years ago, and we had a fascinating conversation. We exchanged phone numbers because it just seemed too much of a coincidence to have sat next to each other to not meet and talk again.

The concert inspired me to try to play the piano again. I found that I can play the things I'm very familiar with, but if I need to read the music, I can only see half of a bar at a time, and it's very hard to scan forwards, which you need to do in order to prepare for the notes that are coming up. At least I can still sing. I had some fun with Gilbert & Sullivan's "with cat-like tread" from Pirates of Penzance this morning, plus the "a lady fair of lineage high" song from Princess Ida, and Lady Jane's  song from "Patience" (I was cast in the role in year 12, but the teacher who was to direct it was sacked, and I never got to perform it - I'll paste the words below, as they seem rather prophetic of the current comings and goinng of my hair, and the steroid-induced changes in my figure. If you want the music, you know how to find things on youtube).

I'll start playing Mahler's 8th symphony and Beethoven's 9th again - I can sing the latter from memory, and the former near enough, so it won't matter if a visual field problem stops me scanning ahead. I'll have a good sing and immerse myself in the music. Has to be therapeutic.

Liz is leaving tomorrow, and Farah, one of my friends from boarding school, is arriving around the same time. The time has gone so quickly - Liz was preceded by Libby, and Farah will be followed by Caroline, my dear cousin/sister, who will be here for 3 weeks, up until the completing of my radiotherapy. I've completed 19/34 RTs now, I only hope I don't get more tired, I don't want to be asleep the whole time they're here, though I feel so much better for having slept well today. And for eating my cousin Stephanie's divine apple crumble. Everyone benefits from routines, it seems. And if I just get enough sleep, maybe I won't be so irritable and cranky, which makes me feel guilty, which just makes me more irritable and cranky...

Off to sleep now, perchance to dream.


G&S "Patience"

Recitative- Lady Jane

Sad is that woman's lot who, year by year,
Sees, one by one, her beauties disappear,
When Time, grown weary of her heart-drawn sighs,
Impatiently begins to 'dim her eyes'!
Compelled, at last, in life's uncertain gloamings,
To wreathe her wrinkled brow with well-saved 'combings',
Reduced, with rouge, lip-salve, and pearly grey,
To 'make up' for lost time as best she may!

SONG – JANE

Silvered is the raven hair,
 Spreading is the parting straight,
Mottled the complexion fair,
 Halting is the youthful gait,
Hollow is the laughter free,
 Spectacled the limpid eye –
Little will be left of me
 In the coming by and by!

Fading is the taper waist,
 Shapeless grows the shapely limb,
And although severely laced,
 Spreading is the figure trim!
Stouter than I used to be,
 Still more corpulent grow I –
There will be too much of me
 In the coming by and bye!

This second song, from G&S's Princess Ida is just fun - I got to sing as a solo it in year 11, in the set of musical numbers before doing the second act of the Pirates of Penzance. I'm not a brilliant singer, prefer to sing in choirs, but I sing better than I play piano.

SONG – PSYCHE
A Lady fair, of lineage high,
Was loved by an Ape, in the days gone by.
 The Maid was radiant as the sun,
 The Ape was a most unsightly one,
  So it would not do –
  His scheme fell through –
For the Maid, when his love took formal shape,
 Express'd such terror
 At his monstrous error,
That he stammer'd an apology and made his 'scape,
The picture of a disconcerted Ape.

With a view to rise in the social scale,
He shaved his bristles and he docked his tail,
 He grew mustachios, and he took his tub,
 And he paid a guinea to a toilet club –
  But it would not do –
  The scheme fell through –
For the Maid was Beauty's fairest Queen,
 With golden tresses,
 Like a real princess's,
While the Ape, despite his razor keen,
Was the apiest Ape that ever was seen!

He bought white ties, and he bought dress suits,
He crammed his feet into bright tight boots –
 And to start in life on a brand-new plan,
 He christen'd himself Darwinian Man!
  But it would not do,
  The scheme fell through –
For the Maiden fair, whom the monkey craved,
 Was a radiant Being,
 With brain far-seeing –
While Darwinian Man, though well behaved,
At best is only a monkey shaved!