scan results - stable or improved :)

I've seen the report on last night's MRI scan - the largest lesion seems smaller, and the others are either unchanged or smaller. Such a relief - we can go on holiday without worrying that something might be growing in there.
Thanks to everyone who is thinking of me, praying for me, or sending non-secular healing thoughts. According to a rather shonky email I received yesterday, scientists have shown that DNA can be modified in a petri-dish - send loving thoughts, and the double helix relaxes, send negative energy, and the  double helix contracts, and the DNA changes. I didn't have the energy to try to find my way through the email, or to check the veracity of the research, but I figure that being the subject of other people's thoughts and prayers isn't going to do me any harm. I'm very grateful.

Let's keep on making those tumours disappear together!

Walking a tightrope

Back from seeing the physio in Outpatient Rehab. She said I was looking much better than before, and was impressed that I was walking without the forearm crutch - I think I gave it up over a month ago. She said my right foot is catching on the ground a little (it was the left one before), and I've noticed that this is also happening at home an on uneven surfaces, which presents a falls risk. It's not too bad, but it makes me feel vindicated in wanting to bring my next MRI closer - it doesn't make sense for me to have  sensory changes in the right side of my face, or in my right leg, unless something is happening in my left somatosensory cortex. I had the MRI at 4pm yesterday, haven't heard anything about it yet, haven't looked at the disk with the scans - thought I'd save that for seeing the neurooncologist on Thursday. I'm determined to have this holiday with Ben and the boys over Easter, and to make the brain changes disappear through sheer will-power, if I must!

I came up with a good analogy while talking to the physio today: having had two GBMS, and knowing that there may be more gliomas, is a little like finding myself walking a tightrope over a deep gorge with a crocodile-infested river below. I've never walked a tightrope before, I don't know how to do it, but it's where I am, and I know that if I keep my balance and just keep walking one step at a time, I will eventually come to the other side. If I look down and worry about the chasm, or the crocodiles, I may lose my balance and fall, and I won't be taking the steps that I need to keep taking to reach my goal - firm ground on the other side. I have to trust that I will make it. There's nowhere to sit down and rest, my breathing is the only thing I can use to help maintain my balance and focus. Though the view is amazing from up here, and I can hear the wind and the birds, I can feel the breeze blow by my face, and I know it is truly wonderful to be alive, even if there are snappy dogs behind and within me telling me to hurry up, to remember to take my pills, to be less forgetful, to control the children, to tidy up the house, put the laundry away, pack the bags, cook dinner. These things aren't as important as keeping my balance on the tightrope, taking one step at a time, and focussing on reaching the other side. But, oh! the world is so beautiful from up here, even the gorge, the river, the crocodiles - they all have their place in existence.

Ok, better stop there before the gap between being poetic and seeming crazy is obliterated.
Why do I care so much about my reputation (see my last post)? It comes from being acutely aware of other's perceptions when I was a child, of being sensitive to other's opinions and perceived or actual criticism, of not feeling that I was worthy of love. Putting all this out there is a little like disrobing in public - I'm not sure that people have noticed that I feel exposed - or maybe I was wearing beautiful clothes underneath the outer cloak that I didn't know were there. People keep sending me kind and supportive emails, letters, and messages, and I'm not sure what I've done to deserve it - but I'm glad, because I feel appreciative and warm to every one who has.

I talked to the physio about the experience of being a patient, and how being a clinician often makes it hard to ask the questions about that experience. I might have a trial run of talking about such things to our allied health department before putting a conference presentation in - it would be good to test it in front of a supportive multidisciplinary audience before trying it in front of my profession. I suspect that I might have something to offer to help improve clinical practice in a range of disciplines, at least I hope so.

Too much introspection for one day. There's a load of clothes to hang out, sheets to put away, lunch to make and eat, and packing to do. Visualise a healthy brain for me, if you have the time and inclination. There's so much I want to do on the other side of this tightrope.

Holidays approaching fast

We'll be leaving for melbourne tomorrow evening, for our first family holiday interstate since 2011. Time is speeding up as the number of things to do dwindles, and the piles of clean laundry to be sorted keep increasing. 

I have an outpatient rehab appointment at 12, so I can't write for long, but there are a few things I need to get down here so that they stop distracting me.

1. The unforseen consequences of creating a new Facebook account. I did this yesterday, and received several alarmed messaged from people who thought that my account had been hacked. I thought that it would be a good way to stop spending so much time reading the news feeds on my main account, and that it would also allow me to reduce my >120 Facebook contacts down to the core people who have been supporting me over the past year. I used a name given to me by a Tibetan lama for advice on mantras and other strategies to help me achieve a long and happy life. I don't have to change my name officially, and don't need to use this name if I don't want to, but the idea is that it will help reduce any ego attachments, remove obstacles, and maybe even purify negative karma. I've been reciting mantras to achieve the same results.

2. The possible consequences of announcing to anyone that I now have an alternative Tibetan name, and that I am engaged in this sort of spiritual practice: I know there will be people who know me who will think I have lost my marbles or gone all hippy, and that this will somehow affect my credibility. People aren't comfortable talking about spirituality, or our souls, or the idea of heaven or reincarnation. I haven't been comfortable to acknowledge my interest in these issues because it doesn't fit easily with science, and I know lots of people who are atheists because they argue it's impossible to prove or disprove the existence of God. I've always felt that there is a loving presence behind all creation, but I couldn't come to terms with a loving presence who would send people to hell just because they did not know about the path to redemption… lots of complicated issues to explore there. The basic thing I'm trying to get across here is that in confessing to having an interest in, or following, any spiritual practices is not something that people seem to talk about comfortably: they seem ashamed to confess to such things, perhaps because of the damage done by fundamentalist Christians in discussion of issues like evolution, abortion, or homosexuality, and because of terrorist attacks motivated by extreme religious ideas. 

I know a mental health professional who was ostracised by members of his field several years ago because he started talking about the importance of acknowledging people's faith or spiritual ideas in clinical practice. It's possible that I will receive a similar reception in my field, and that anything I say may be taken as proof that my brain tumours have affected my reasoning ability. It's possible, of course, that they have in some way, but I seem to be doing ok on logical reasoning. And I'm willing to put the topic of spirituality on the agenda in discussing recovering from illness, because I haven't seen much on it, and it's important that we try to create a safe place for people to discuss these issues without fear of reprisal, or fear of provoking bitter theological debates. I'm not trying to convert anyone. Buddhism works for me, as does the core teaching of every other religion, which seems to be to love one another. All other rituals and beliefs are added on top of that, often in reflection of the culture of each religion. Loving every living thing, extending loving kindness to all sentient beings, are core. And I would add that this includes our precious, beautiful, remarkable environment, which sustains us all.

3. The possible consequences of "going public" with the news of my brain tumours: I announced my breast cancer diagnosis to the Australian neuropsych community, via a neuropsych mailing list, when I was diagnosed last year. I could have kept the diagnosis secret, but I knew that word would have gotten  around, and I didn't feel I had anything to hide or of which to be ashamed. I was chair of the CCN at that stage, so to suddenly stand down due to "health issues" after being very busy with the college and the conference the previous year would have made people wonder why. I prefer to be open, honest, and transparent so that people don't need to resort to gossip and rumours. (It's a pity the Australian Government hasn't kept their pre-election promise to be open, honest and transparent. They seem to have discovered that they can get away with much more by being vague, secretive, and deceitful  - to what cost? But that's another issue).

I didn't make a similar public announcement about my brain tumours until a week or two ago - the time between diagnosis and surgery was only 2 days, and I had already seen how announcing my breast cancer had caused distress to some people. I didn't want to put people through that again. So I waited until I was making a good recovery, and I didn't give any details of the tumours, in the hope that I wouldn't worry anyone. People who'd responded to the breast cancer news already knew about this blog, so they would have discovered the gory details here, and maybe word has got around, it's only a small community (500 CCN members, give or take a few), so people probably talk, if there's nothing better to talk about. 

One risk of being honest about my brain tumours is that I might be perceived to be cognitively impaired, impulsive, or disinhibited by my colleagues, the very people who work with people with brain conditions all their lives. So announcing that I have had brain tumours may be another blow to my credibility in a scientific community where issues of spirituality and subjective experience are swept uncomfortably under the carpet - they're not things that we can measure easily, even though we know they exist. We're far more comfortable with recording symptoms, or observing signs, of changes in cognition, behaviour, personality, mood, affect. We don't have a model for eliciting or discussing the experience of being a patient. I suspect I will be advised by some people not to pursue this, that it will put my "reputation" at risk, that it's not something we should consider, that we should keep collecting our measurable data and following our statistical algorithms to objectify the patient's symptoms, presentation, and achieve greater diagnostic accuracy. And possibly lose sight of the patient in the process.

I'd like to talk about this at our conference in November. Are any of the neuropsychologists reading this blog interested in these thoughts, or the other insights I've had into how being a patient can make us better clinicians? Please use the contact gadget on the right of this blog, or email me, with your thoughts about what I should include in my conference submission.

Thanks for being a silent, supportive audience. The thoughtful emails, and lack of trolling or negative feedback makes me feel safe here, even if I'm at risk of being perceived as a left-leaning unscientific hippy loony.

Fiona

Counting down to the school holidays

I slept all day yesterday, and most of the day before. Today, I stayed awake all day, didn't feel the need to sleep. High five to myself! I missed out on my walk today, but had a lovely long walk with Charmaine and Brenton in Invermay yesterday, and I walked quite a lot on Monday. I thought I was having a massage at 930, so I walked over to the cancer support centre in the morning, only to find the appointment was for next week. I'd written the wrong time in my diary and phone.. So I walked back to the hospital and reactivated my Outpatient Rehab referral - my legs feel like The Wrong Trousers from the Wallace and Grommit movie, only they don't allow me to walk up walls and across ceilings, and they're not particularly strong. Probably lucky, as all that hanging upside down would probably make me dizzy.

I've been quiet on the blog lately because of the need to catch up on sleep, my attempts to sort through the pile of papers on our dining table, the never-ending laundry, and my attempts to meditate and say my mantras (which often ends in sleeping). The boys are sleeping in their beds most nights now, which is helping me to sleep more deeply, and taking Panadol Osteo is helping to suppress the bone aches from the GCSF injections (still every other day).

Time passes slowly and quickly while on leave like this. I've finally realised how many hours I waste reading various interesting posts on Facebook, and I'm working of being more mindful of how much time I spend reading different news feeds. I'm a compulsive reader, and the internet makes it easy to read all day, but not necessarily deeply.

Ben says I've been a bit morbid lately - I dreamt that I was dead the other day, and it wasn't too unpleasant. It was one of those dreams where you wake up and become aware that you're sleeping, but I felt I was floating above my body and that I was dead. I felt still, calm, and peaceful. I think I'm starting to accept the inevitability of my demise, and have stopped worrying about it (though I haven't stopped being worried about changes in symptoms, if they occur). Death will happen when it happens, and hopefully not too soon for me. Ben's family suffered an unexpected loss yesterday, with the death of a 32 year-old who went to work in the Indian town of Poona, felt unwell, and died of a suspected heart attack in the ambulance on the way to hospital. Their shock and grief of his family must be overwhelming. I met Raoul in 1998, he was a lovely young man, who should be living a long life with his family, not sleeping in his grave.

I feel grateful for this opportunity to come to terms with my own mortality - it's a fact of life that we often avoid confronting. Quotes from The Tibetan Book of Living and Dying  by Sogyal Rinpoche keep popping up in my Facebook feed, they all seem particularly pertinent. I'm going to get ours off the bookshelf and read it, I didn't finish it when I first delved into it in the late 1990s.

There is so much that I want to write about, stories for my boys of my wonderful childhood, stories about my family, insights I've gained over the past year… but taking my medications, supplements, and dietary regime can take a few hours each day. Exercise and rest are important too, so there's not much time for writing. Until I extract myself from my reading addition. A friend recently deleted Facebook from her phone - a drastic step, but one I'm considering.

Being aware of my reading addition, I used the home phone to book our hire cars for our holiday (one in Melbourne, one for Queensland), and texted some friends in Melbourne to let them know we'll be there from the 17th to the 20th. We'll be staying in a Quest apartment in Kew from Good Friday to Sunday, and I've invited people to drop in to visit, hoping that will minimise our travel time and maximise the number of people we can see. It will be a little like holding court, which seems appropriate in this new era of Knights and Dames.

If you didn't get my text and would like to drop in while we're in Melbourne, please email me and let me know. I'm hoping that my excitement at seeing people will keep me awake during the day, and that I'll sleep well each night.

Overall, I'm feeling calm and content at the moment, and hope that the Valcyte and all the supplements I'm taking will stop any more glial cells from mutating and becoming cancerous. There's so much to do!

Brain tumours are better than breast cancer because...

(Black humour alert)

April 3, 2014

In case I ever feel like doing a stand-up comedy routine about the pros and cons of breast vs brain tumours:
Brain tumours are better than breast cancer because:

Brain tumours rarely spread outside the brain - so no need to worry about metastatic disease in the rest of your body, only spread or recurrence inside your brain.  Breast cancer mets can pop up in bones, liver, or other organs, including the brain.

No need to worry about prophylactic surgery or reconstruction after brain surgery. No-one can see that you've had brain surgery, once the scars have healed and the hair grows back. If you choose to stay bald, you can have some impressive battle wounds to display to people who are into scarification and body-piercing.

No need to feel annoyed that pink is the colour for your cancer- grey is much cooler.

You can blame lack of energy, need for naps, fatigue, tuning out, irritability or emotional outbursts on your brain tumour or the after-effects of radiation. You can even have a convenient excuse for memory lapses or tactlessness (warning- use sparingly, or people may start to think you're impaired, and treat/accommodate you accordingly)

There are less treatment options to choose from with brain cancer- basically, there's surgery, if they can operate without killing you, and combined chemotherapy/radiotherapy. Although the chemo (Temodal (temozolamide)) causes nausea and vomiting, that's usually fixed by taking an anti-emetic (pleasant-tasting ondansetron) one hour before the chemo. But don't schedule your radiation for first thing in the morning: The chemo works best if taken one hour before radiation, and needs to be taken on an empty stomach. So you'll need to be up at least two hours before radiotherapy to take the anti-emitic and the chemo. Then you can have breakfast. This is still better than getting chemo infusions for breast cancer, sitting in a big clinic with other people hooked up to brightly-coloured liquids, trying to pretend to enjoy hospital sandwiches. With infusions, you need an infusaport - a titanium disc topped with silicone, inserted under your skin so that drugs can be directly infused into a major vein (sublcavian, or jugular). No infusaport = no more discomfort when sleeping on your side with no port positioned conveniently between your collarbone and shoulder, no need for the port to be flushed every 4-6 weeks, no risk of infection in the port, no painful needling of port to access it.

With brain cancer, your hair doesn't fall out all over your body, rather, it falls out according to the entrance and exit paths of the radiation. Ask your radiation oncologist to give you the most creative pattern they can. Spirals worked well for me. Much better than losing your eyebrows and eyelashes to breast cancer chemo. I missed them more than the hair on my head.

Brain cancers are rare, so you won't be offered endless stories of how people either experienced it themselves and survived. Rather, you'll discover an amazing ability to make people fall silent and change the topic of conversation without really intending to do so. Then they'll get back to you with news of a clinic in Germany, the US, or Israel where clinical trials are being conducted to treat people with brain tumours, not knowing that clinical trials usually have a placebo (no treatment) group, and have exclusion criteria for people with a prior history of cancer (they don't want to contaminate the results of the treatment trial with people with complicated histories).

Brain tumours give you an intimate perspective on how amazing a healthy brain is, and how adaptable brains can be to damage in certain areas.  They make you appreciate every moment of your life before you knew you had one, and to regret not exercising more, reducing your stress or using your mobile phone prior to your diagnosis. Brain tumours also makes you regret ever banging your head in a college drama production, drinking too much at uni, and not having enough sleep or a healthy diet over the previous decade. Having a brain tumour removed successfully makes me appreciate the advances in neuroimaging and surgery that allow this to be possible, and has made me determined to live, love, eat and sleep well for the rest of my life, no matter how long that might be.

I used to think that if I ever got dementia, or a brain injury, it would be good to have no insight into my deficits. I thought it would be more pleasant to be unaware of memory problems or tactlessness, but now I'm not so sure. As someone who has always enjoyed a good memory, and who has been worried about offending or upsetting people, a lack of insight doesn't seem such an easy way out. At least with insight, I can try to support my memory with notes and other strategies, and I can apologise if I offend someone. Losing insight into how my behaviour affects others would undermine a fundamental part of how I see myself…. Having insight allows me to hope and plan and strive to be better, and to silence my inner critic.