Life after cancer, coping with fatigue, and maintaining a positive attitude

I don't know if I'm ever going to feel "normal" again.
My life has been turned upside down, shaken around, and emptied out like my son's pockets before I put them in the washing machine. I've seen all the fluff and lint that has collected at the seams, I've seen the grit and grime, I've discarded the used wrappers and pieces of paper. The pockets are empty now,  but the school bag still needs to be dealt with, and decisions made about what to discard and what to keep.

Fatigue is an ongoing issue for me, and an unspoken source of concern for both of us. It seems that I need to sleep for one to two hours during the day for each hour of exertion or concentration, but then my nightly sleep is disturbed, with regular waking around 230 or 3 am, and I sleep in until 830 or even 1030 some days. I get my most solid sleep in the later phases, or when I have an afternoon nap - I sleep so deeply that my mind becomes aware of the fullness of my bladder, or the need to get up and prepare food for the family, but my body just wants to keep sleeping. It doesn't care about food, it just loves the feeling of being deeply asleep, and resents the nagging need to get up for any reason.

I'm told that cancer-related fatigue can last for months or years after treatment, and I'm wondering if it's realistic to contemplate returning to work anytime soon. If I can't find enough energy to get through my daily activities at home, how will I find it to go to work? It will just make me more tired and take away time that I should be spending on looking after myself and my family. My experience has made me painfully aware of how important they are to me, and the only way I'll can put a positive spin on my life as it slowly passes before my eyes is to promise to prioritise my children above everything else. Doing so includes prioritising my wellbeing, so that I can be a more responsive and less reactive person. I haven't been good at doing that, for fear of being accused of selfishness, but having limited energy means that I've learnt to be good at rationing my resources and activities, irrespective of what people think about it.

I'm so sick and tired of the ongoing effort to remain positive and optimistic. I need a good dose of company from my friends in Melbourne, but I'm afraid of spending too long on the phone lest it gives me another brain tumour, or causes a recurrence of the old ones.

A bit of sleep is needed. It's after midnight.

One hour later, couldn't get to sleep. I've done some Tebetan exercises, but they've only made me more alert, and more positive in my outlook.

I've been going through a dark patch since the siege in Sydney and the massacre at the school in Pakistan last week. It became increasingly difficult to feel positive about the future, and the pre-Christmas stress and fatigue in my little family unit has been unsettling. I'm so thankful for Nathaniel's ongoing ability to be cute and adorable, and also sensitive and supportive, and for David's increasing ability to be calm and reflective, despite the unsettling surges of hormones that are affecting his moods and energy levels. Ben is on leave for a couple of weeks, so I'm hoping he'll be able to unwind after a stressful year at work. I know that my health is also a source of ongoing concern for him, and that it must be hard to deal with my fatigue and lack of energy, which often translates into slowed thinking, and difficulty in multitasking, which presents as being distracted and sometime irritable. I try to stay calm and respond thoughtfully to my family, but I don't always succeed, and sometimes get cross with them. I know its unrealistic to expect anyone to have the patience of a saint, particularly after what I've been through, but I have to keep trying to be calm,patient, loving, and non-critical, because my family are so important to me and it breaks my heart for us to bicker with each other. I know bickering is normal in families, but I hate conflict and critical attitudes, and it's hard to stay hopeful and positive about the future when the kids are squabbling. I've threatened to move out or become a nun a couple of times when they won't stop it, they don't understand how much it upsets me. I have fought so hard so that I can be here for them, and when they're nasty to each other I feel despair about the future. I hope they'll continue to grow into kind , compassionate, and thoughtful young men, but I worry so much that this stressful time will affect their development and ability to have healthy relationships. I know in theory what I should be doing as a parent and a partner, and I suppose I shouldn't feel guilty for not getting it right all the time. Trying is the most important thing, I hope.

(A few days later)

I need to take things slowly and not attempt to do too much. I simply cannot do things as quickly and efficiently as before, and I need to prioritise tasks very carefully, giving highest priority to eating healthily, exercising by getting out in the garden or walking, and spending time interacting with the kids. That means most of the Christmas cards still aren't done yet, the tax papers still need to be submitted to the accountant, lots of other papers still need to be filed or completed, but all the bills are paid on time, and the garden is looking lovely. I trust that people won't mind if the Christmas cards are late, and the housework and filing can wait.

I'm exhausted, despite sleeping well last night, and deeply for a few hours this afternoon. I've had good long walks each day for the last few days, and I'm feeling stronger, but I hate this crushing feeling of fatigue,and the sense that I'm losing time through sleeping so much. I know that I need to respect my body's need for sleep,but I also need to feel like I've achieved something each day, that I'm not wasting my life, and this chance that I've been given to live after having a disease that usually steals lives so quickly.

I'm trying not to dwell on my mortality. I'm trying to be positive, but it takes so much energy to generate positivity every day. I need to talk to my friends more than I do, it helps me feel more positive. It's not good to spend too much time in my head. Even blogging is helpful, when I get around to doing it, but I've been reluctant to write recently because of the fatigue and my sense of guilt at not being able to maintain my energy levels and positive outlook. I know its possible to change one's thoughts and perception of the world, and I've done a pretty good job for the last couple of years, but I'm so bloody tired. I wish a fairy godmother would come and look after the groceries, cooking, and housework, so that I could rest and recuperate through gardening, talking to friends and family, and eating healthily.

I must sleep, so that tomorrow can be another good day, like every one has been for the last week. I think I'm just getting sentimental because of Christmas, and the difficulty in seeing everyone I want to see ( which is everyone!).

I promise I'll accept my need to sleep, and to stop worrying that my fatigue means something dire, or that I'm wasting time in doing it.

I hope you've all had a happy Christmas and that the New Year brings good health and much love and contentment to all of you.

OT driving assessment

I passed the on-road test today, after passing the off-road test with flying colours last week. I feel exhausted. It was very stressful to drive again after 15 months, and to be worried about cars, pedestrians, keeping in my lane, and obscure road rules with a driving instructor sitting next to me, and an OT watching everything from the back. 

I'm relieved that I passed, but I know I'll have to be very alert and vigilant when I drive, even for short distances. 

I just want to go home and sleep now, but I need to drag the boys away from playing a computer game called Destiny with their cousin, get them down to the CBD for a celebratory lunch, and take a taxi home. 

Stool feeling shocked and sleep-deprived after yesterday's tragic siege in Sydney. So sad for the families and loved ones of the people involved. So glad to be alive and recovering.

more peripheral neuropathy?

Hi
the pins and needles feeling in my right hand has decreased, but there still seems to be some sensory loss. I'm wondering if it's a new peripheral neuropathy, or if I should just go and get a massage. My oncologist hasn't responded to my email, so I might call him later.

This is very annoying and slightly stress-inducing. I know I have a serious brain condition that could come back and bite me at any time, but I don't want to spend the rest of my life worrying about it. I have so many better things to do. Like planning and taking holidays with my family, enjoying time in the garden (the roses need dead-heading and there's mulch to spread), seeing friends in Launceston after too long a break, talking to family and friends interstate (though I'm now avoiding holding cordless or mobile phones next to my ear, as I don't want any electromagnetic radiation to spur new tumour growth)... A lot of the things I need to do are mundane, like putting the laundry away, but it causes a sense of chaos if they don't get done. Ideally, I'd like to do important, high-impact things, like communicating with the people I care about, getting my students' research projects published (there should be at least 7 papers in total), writing stories for my kids, maybe writing a book - but the mundane things need to be done as well.

I try to turn household tasks into Zen meditation sessions, where I become absorbed in the task at hand, and eliminate worry and ruminations from my mind. That's easier said than done. My life is running in slow motion before my eyes, and I keep getting stuck on things I could have done differently. Like not spending so much on renovating our house in Melbourne. I need to re-route the tracks so that I think about things that I did well, but I don't get much pleasure from that. I prefer to remember enjoyable experiences, like holidays or catching up with people. I can't change the past, I can only affect the present moment, and hope not to repeat mymistakes in the future.

It doesn't help that I have become painfully aware of my personal foibles in recent months. I've realised that I can be not that pleasant to live with, but I'm trying to practice patience, loving kindness, and mindfulness so that my perfectionistic tendencies don't have a negative impact on anyone, especially my family. It's a struggle! As a friend said yesterday, there are mental scabs that we can keep on picking, but if we want them to heal, we have to leave them alone.

Half the day is gone already. I've printed out the school reports, had some breakfast, and prepared a pet insurance claim form to send off. I've collated all the terminal illness forms, but need a bigger envelope for sending them, and someone who is not my spouse to sign as witness.

I need to keep focussed on the to-do list, and forget that my time on earth may be prematurely cut short. That's how I functioned before the GBM, it's how we all function. We know that we'll die some day, and that it could be sooner than expected, but we pretend that we have all the time in the world. If I acknowledge that I may not have all the time in the world, I start to feel a bit like Chicken Little ("the sky is falling!"). I need to take a deep breath and file thoughts about the unknown future away, and just keep focusing on what I need to do right now - especially with school holidays and Christmas coming!

I'm at peace with the thought of dying, whenever it happens. I know that Ben and the boys will be okay if it happens in the next few years, and that I will always be in their hearts. I'm not in any hurry to do it, and while I'm grateful for being alerted to the finite qualities of this life, I also think that fate was a little rude in making me so acutely aware of my mortality. I just have to make the most of the opportunity, and navigate a serene path through the mundane and meaningful aspects of experience.

Off to post that claim form. I have the first part of my OT driving assessment on Friday (the off-road, driving simulation component), and the on-road test on Tuesday. Fingers crossed that I pass, and that I'll be driving again for Christmas

Pins and needles

I've been getting pins and needles in the little finger and ring finger of my right hand since yesterday. There seemed to be similar sensations in my right foot and jaw/lower face. I've emailed my oncologist to seek his advice.

It's hard not to be a little paranoid about it, but better to be alert than to leave things unchecked. 

I hope I've just pinched a nerve through sleeping awkwardly, but I'm not in any pain. I'm due for another MRI in January, I'm hoping it will continue to show improvements.

This is all very ironic because I read a bedtime story to the boys last night about some sailors who were shipwrecked on an island inhabited by beautiful women who fed them wonderful food. When they asked the women why there were no men on the island. The women said they'd all gone away. The sailors never wanted to leave,until one night,a sailor heard someone talking outside his room, and he looked outside to see some goblins, who were saying they needed to feed the sailors until they were nice and fat, and then they'd feed on them. 

The sailor told his shipmates, and they all prayed for help from the gods, which came in the form of a winged horse, who was to carry them all away. One sailor didn't believe that the beautiful women were really goblinsin disguise, so he refused to leave, no matter how much his friends pleaded with him. As the giant horse was flying them away from the island, the sailors heard their friend calling to them. He had seen the goblins preparing a big pot for their feast. He wanted to be rescued. 

The moral of the story, conveniently included in the book, was that it's sometimes hard to see that you're in a difficult situation, but that you can't fix it if you don't acknowledge the reality.

It would be nice if a winged horse would come and take all my problems away, but all I can do is keep meditating, staying grounded in the present, and hoping for good health and happiness for every sentient being. As well as eating healthily, exercising, maintaining contact with friends and family, and taking my medications on time.

I'm hoping this tingling is just transitory, will see if I can fix it with a massage.

Take care, and thanks for reading.

Life after the conference, a summary of dietary tips, and reflections on looking back

I think my presentation went well, and I hope I managed to cover the key points that I wanted to make. It was such a rush to trying to convey something meaningful in 30 minutes, even though I used the "less is more" approach in doing my sides.  They had to bring extra chairs into the room, and people were standing at the back. The audience gave an enthusiastic round of applause, and a number of people said very kind and reassuring things afterwards.

I felt exhilarated for the first day or so, but then was hit by a bad case of post-presentation doubt. Even though I tried to stay on topic, and didn't include many details of my treatment, I felt like I'd exposed myself and done a metaphorical naked lap of the quadrangle back at Uni, with friends, colleagues, and strangers looking on. 

I felt so compelled to give the talk and share the insights I'd gained as a clinician-turned-patient, that I didn't anticipate how I'd feel afterwards. I was simply focussing on getting through it, and not what would happen next. A bit like having treatment for cancer, really. 

Looking back has made me realise that I was very ill last year. I was talking to a friend who is a GP yesterday, and she winced when I said I had pancytopenia at the end of last year. Her expression made me wonder exactly how ill I was. I'm not going to do any reading about pancytopenia (when all of your blood counts, including red blood cells, are low), but I guess that my need for four or more blood transfusions, a three-week hospital admission, insertion of a new infusaport for administration of all the blood, fluid, antibiotics, magnesium, potassium, and whatever, suggests that I was pretty unwell. I was a little worried when they did a bone marrow biopsy to exclude nasty haematological disorders like leukemia, but I didn't have the energy to research things, or even to worry very long. It seems that the Temodal, used for my brain cancer chemotherapy, caused a prolonged and severe pancytopenia, probably because my bone marrow had already been weakened by the six cycles of breast cancer chemo beforehand. 

Don't take your immune systems for granted, gentle readers. I didn't nurture mine enough before or after my first diagnosis, I kept thinking that cancer wouldn't happen to me. It happens to one in three men and one in four Australian women. Pretty rotten odds of getting cancer sometime.

Educate yourselves about what you can do to reduce the risk, and don't be overwhelmed by the amount of information out there. The basic facts seem to be that cancer thrives in an acidic, oxygen-depleted, glucose-laden environment. Many sources recommend steps to make your body more alkaline (less dairy food, apart from fermented dairy products; lemon juice or apple cider vinegar in water each day), plenty of water and regular exercise to maintain hydration, remove toxins, and have a well-oxygenated body; and go for a LCHF (low carb, healthy fat, ketogenic diet). Eating lots of green vegetables, beetroot, cruciferos vegetable (broccoli, cauliflower, Brussels sprouts) and limited fruit (fructose becomes glucose in the blood). 

I'm not an expert in this, and not qualified to recommend specific strategies to reduce cancer risk, but these are suggestions that appear repeatedly in the reading I've been doing. Such dietary changes are difficult to achieve for many people, but they are worth it if they help keep you healthy.

This link, from Brain Tumour Alliance Australia, includes an unofficial summary of a recent brain tumour conference. The notes on life after brain tumours and rehabilitation were particularly interesting to me. 

http://tinyurl.com/lmdcf7c 

Yet again, I realise how fragile life is, and how lucky I am to be relatively fit and well and free of major cognitive or physical impairments. I'm not going to allow myself time to look back on what happened and what could have happened. I need to focus on enjoying the present and setting some new goals for the future. It doesn't help to think about what happened, or to wonder exactly how sick I was. That time of daily injections to boost my bone marrow function, and twice weekly blood tests, is over. I'm getting healthier and stronger each day. I'm going to be here for my boys for as long as I can.

I must sleep now, I'm tired after getting the groceries with mum, and the boys will be home from school soon.

Fatigue and niggling thoughts

One week to go until the conference in Adelaide. I'm supposed to submit my final powerpoint slides by tomorrow, they've asked all the presenters to do it so that the technicians can load the slides on the computers before the conference.

Over the last two weeks, I've spent 4 mornings sitting with my laptop in coffee shops, writing down thoughts for my conference presentation, trying to organise and condense my experiences into a 30 minute presentation. I spent another morning at home working on a first draft of a powerpoint presentation, but I wasn't happy with it. My "cheer squad", as Ben calls them, gave useful and mostly positive feedback, but I'm still feeling quite overwhelmed by the task that faces me. There's so much I want to talk about, and so little time to do it. I thought I'd found a solution:  giving a powerpoint- free presentation; so I spent another morning writing a talk that I can stand up and deliver, with no visual aids at all. I wrote some good paragraphs, but it was hard not to get sidetracked, and then an old friend said I should include references to validate my experiences, which made me feel even worse. I don't have the time or energy to look up references, and I have deliberately avoided reading other patient experiences because some are very confronting and distressing to me. And I only have 30 minutes. Other friends reassured me that I don't need to provide references, that my experience is real and valid in itself, and that people will want to hear my story and unique perspective and experiences,  that the audience can find references for themselves if they want to.

No wonder I've been feeling utterly exhausted each afternoon -  I think I'm using a lot of energy in the concentration required to sit and write, and the struggle with working out how to give the best talk I can in 30 minutes. I've found I need to do my Lumosity training in the morning when I'm fresh. Doing it in the afternoon or evening results in lower scores on most tasks, but particularly the ones requiring speed and attention. I don't think that Lumosity has improved my cognitive abilities over the 5-6 weeks I've been doing it. I've got better at most of the tasks with practice, as most people would with repeated practice on task. The only benefit I can see in it is that it might give me advance warning of any tumour-related decline in cognitive functioning if I'm diligent about doing it the same time each day (i.e., in the morning, after breakfast, without any distractions).

The problem with having had a GBM is that I worry whenever I feel excessively sleepy, when my face tingles, when I drop things, when my walking still feels a little uncoordinated, when my head aches (not often), when noise is irritating. My last MRI was in October, so the next one will be due in January if we stick to the 3-month schedule. I might be able to get one in December if I continue to be worried by the symptoms I mentioned above.

I need to see my radiation oncologist soon, anyway, so he can fill in the specialist's report section of my Income Protection Insurance. I'm also going to lodge a life insurance claim, as my policy covers me for terminal illness. Because GBMs are not curable, they probably meet the definition of terminal illness, and although I hope not to die in the next 12 months, it's impossible to say when it will happen. Our financial advisor said the insurance underwriters will probably prefer to pay out the policy now, because it will cost them less to do so now than it would for them to pay it in a few years' time when the payout will increase in relation to the CPI. Better to be able to benefit from the payout sooner, while I'm alive, rather than later. It's a dismal thing to think about, but the good thing is that they don't ask for the money back if someone diagnosed with a terminal illness gets a payout and then  survives.

Damn, I'm tired. I need to get some sort of slides together to email tomorrow - maybe just a title slide,  a couple of photos, and a link to this blog, so that people can read my detailed rambling musings in their own time.

I've been getting a weird feeling at the back of my nose/top of my mouth, a little like I'm going to sneeze. It's been coming and going for a few weeks now. I don't know if it's an aura or something more sinister. Time to take half a clonazepam and go to sleep. If I have another seizure, I won't be able to drive for another 12 months.
Goodnight

Choosing life

I've been loving the spring weather lately, and feeling a bit like I'm wagging school whenever I go out in the garden. This is the time of year when I remember struggling to stay inside and study for final exams at school and uni, it is just so beautiful to sit in the sun outside, and studying outside isn't helpful, because the sunshine induces a wonderful languorous sleepiness.

I've been doing really well lately, my appetite is back and I've had the energy and inspiration to cook healthy meals for the family each day, and I've been doing exercises on the fit ball to improve the strength in my legs - all that time in hospital left me deconditioned and feeling a little uncoordinated when I try to run (I felt like a jerky string puppet). The fit ball exercises have been surprisingly effective, and tiring, and I managed to semi-run to the front gate this morning to catch Ben as he drove the kids to school (they'd forgotten some paperwork).

The dining table still isn't completely cleared off - I plan to organise all the tax stuff and do the salary packaging claim forms today, just so I can get a longstanding task off my to-do list. There are lots of other things to do to tidy up and declutter around the house, but I'm trying to do a balance of things (phone calls, exercise, reading, housework, gardening, healthy diet) so that I have a sense of achievement rather than boredom. I'm hoping to return to driving and to work next year. I have to live as if the GBM isn't going to come back. The most recent MRIs show further shrinkage of residual tumour around the two surgical sites, and reduced enhancement in the right hippocampus and left temporal lobe compared to previous scans, so the tumour hasn't completely disappeared, but it's not progressing. It was a nasty shock to realise that it may always be with me, but I can't live each day in the fear of recurrence. Having GBM has been a stark lesson for me in the delusion of immortality that helps us all to function and waste time on irrelevant, unimportant things. Like that blasted Bejeweled Blitz game that sucks me in on my phone each morning. I enjoy matching up the coloured gems and seeing them explode, but it can easily consume 2 hours of my time playing "just one more" one-minute round. I try to recite healing mantras and sit on the fit ball while I do it, but I know that's cheating, I should be concentrating on the mantras and not using the game as counting beads for each recitation. I'll report on my progress in quitting it next time I write.

Have you heard about the 29yo woman with GBM who plans to end her life on November 1st? I find it very sad and very disturbing. Read the story here and watch the video.

http://www.smh.com.au/lifestyle/life/brittany-maynard-scheduled-to-die-this-saturday-fulfills-bucket-list-wish-20141030-11dzdh.html

Her blog http://www.thebrittanyfund.org/?nlb=1#about-brittany gives a little information

The image of her brain scan suggests the tumour was in the left fronto-temporal region, but it's not clear if she's been offered surgery, only "whole brain radiation" and chemotherapy. It seems from my reading elsewhere that some surgeons are reluctant to operate on "eloquent cortex" - parts of the brain required for speech and comprehension - this may be why she hasn't had surgery. Her puffy face suggests that she's on steroids to reduce the brain swelling, and if her tumour has been judged as inoperable, she may be having ongoing headaches (the steroid-induced puffiness and headaches are confirmed on her blog). She seems to be speaking very fluently for someone with damage in that region, but I can understand her fear of losing the ability to speak, or that a natural death would be slow and painful for her.

It saddens me that surgeons may deny people surgery because they don't want to make them aphasic: strokes and head injuries cause aphasia and a range of other physical and cognitive deficits every day, but people learn to live with it, and there is usually some degree of  recovery, and strokes and brain injuries aren't aggressively invasive, not like GBMs. Denying someone surgery to remove a GBM because they may not be able to speak or comprehend language afterwards is consigning them to a more certain, more rapid demise from the beast. It's not giving them the chance to make any kind of recovery, or to benefit from the available treatments. It's saying that life isn't worth living if you're aphasic. I've seen many people who've become aphasic after strokes or brain injuries who have lived happy and fulfilling lives. It hasn't been easy for them, but a damaged brain isn't like rotten fruit, to be thrown out because it isn't pristine and perfect. The 'Compassionate Choices" people advocate dying with dignity as a choice for those with terminal illnesses whose "suffering has become too much." Is having a puffy face and weight gain from the steroids too much? Headaches, neck pain, might be hard to deal with, but it's not clear what her current clinical status is. She's chosen November 1st to die, but says she can change her mind if she wants to. I hope she does change her mind. There is still hope.

It is possible to love and be loved with a brain that's not working, and the end stages of brain disease are usually characterised by increasing sleepiness and reduced ability to walk and self-care. Medications and supportive care can usually help manage pain (I haven't read of pain being a major issue in the end stages of brain cancer), and although becoming completely dependent on high-level care isn't something that anyone of us would wish for ourselves or for others, I don't think that Brittany's story is a dying with dignity issue. Her decision seems to be more related to a fear of death and dying, and to the ridiculously concrete prognosis she was reportedly given. Her age, gender, and level of functioning mean that her prognosis should be better than that for older, sicker people with GBM. Her choice of an arbitrary date to die (it's after her husband's birthday), before she becomes severely impaired, is hard to fathom. I wouldn't make the same decision, but I have two children who I don't want to leave, and I've seen enough people die from progressive diseases to know that it's hard to predict when it's going to happen, and that life is too precious to terminate early just because you cannot bear to see them suffer. Of course, if someone is actively dying and has unbearable pain or nausea that doesn't respond to treatment, then I can understand their desire for relief from suffering, and the desire of others to help them end it. But choosing to die on November 1st because you've been told you have an incurable form of brain cancer, and when you've been well enough to go to the Grand Canyon the week before with your family.... the fear of getting worse seems to be driving the decision to die.  She could have many years left ahead of her. And even if it's only one year, there are still many things she can do to enjoy life, and to enjoy the love of her family and friends.

I don't know Brittany, I don't know all the details of her case, but I do feel very saddened by her story, and by her decision to end her life. There is always hope. Even for GBMs. And we all have to take our last breath one day - why hasten it because you've been told it's likely to happen soon? I'm going to keep inhaling the scent and joy of life for as long as I can.

MRIs looking good, and the joys of gardening

My latest MRIs looked good - nothing new or worrisome on the brain scans, and the breast MRI looked okay as well, though the report wasn't available when I saw my oncologist, so we have to wait to be certain that the lack of bright spots on the scans means that everything is okay. I'm still considering having a prophylactic mastectomy, so I don't need to worry about it any more. The thing that's holding me back is the desire to avoid any further surgery if possible, and the ongoing daily discomfort from my first mastectomy. It feels like all the tissue under the skin on my right side has been scraped out, leaving a constant sense of tightness that is most uncomfortable at night if I try to sleep on my left side. The same discomfort shouldn't happen with a prophylactic mastectomy on the right side, because there won't be removal of the lymph nodes on that side, which is why it feels uncomfortable on the left. These seem like minor and insignificant issues compared to the GBM, but I can't be complacent, breast cancer is still a serious and potentially life-threatening condition. Given my bad track record with immunosuppression from chemotherapy, I probably wouldn't be able to have chemo again if there was a recurrence of breast cancer, so it would be pragmatic to get the remaining breast off as well. I just need to prepare myself for that. I've been doing so well lately, I'm not keen on going to hospital for anything.  I'm so grateful that my GBM hasn't progressed, and there's no sign of it spreading or recurring, I must be doing something right.

I won't write for long today, it's already 9:41am and I'm going to work on sorting through all the papers on the dining table today, including getting our tax things ready for submission. The house also needs a lot of tidying: clothes to be sorted and put away, kids' things to be put away (I'm tempted to put them all in boxes and leave the boys to sort them), and four boxes of my books from work need to find homes, but all our bookshelves are full. Maybe some rearranging will create more space. I get a greater sense of accomplishment and stress relief from doing the garden - pulling weeds and pruning are gloriously therapeutic activities, though the garden is littered with old rose prunings and a thorny bush that mean I have to be very careful when pulling things out. I'm going to go out there now, before the rain starts, and remove the sticky weed that has escaped our weekend efforts. I wish housework was as invigorating and satisfying...

Anger

I'm going through an angry phase at the moment, where I find myself shouting at trivial stories on the television. I've also been angry with myself for perceived failures in bringing up the children - a painful and futile self-loathing because I've probably done the best I could in the given circumstances. But I worry that I've failed them, and myself. I feel like such a hypocrite, getting angry with other people on television for complaining about their seemingly minor problems, finding it hard to feel compassion for them, even though what they've suffered was probably unbearably hard for them.

The case I'm talking about was a woman talking about how medicinal cannabis helped her deal with the "unbearable" nausea and metallic taste from her breast cancer treatment. My response was "get over it, sister! It happens to everyone. There are treatments you can take to deal with it. If medicinal marajuana works for you, fine, but stop complaining!!! Be glad that you're alive, that you have a curable cancer, that you didn't have febrile neutropenia with nearly every round of chemo, that you didn't then develop an aggressive brain tumour, possibly because your immune system was so severely compromised by the breast cancer treatment." I understand that chemo makes people feel like crap, but they should be bloody grateful that there's something that can help reduce the risk of their cancer recurring. I wasn't even able to complete all the recommended chemo for my GBMs  because my blood counts fell too low. So I have to have faith that I will get through this on the treatments I'm on, and the diet and lifestyle changes I've made - though giving up dairy and meat is proving difficult. I can't see the point of complaining, and I feel very impatient with those who complain about relatively minor things. And then I feel guilty and hypocritical for feeling angry and finding it hard to find compassion for them. Angry. Angry. Angry. I feel like digging up the garden, throwing out boxes of papers, ripping out the gutter guards on the shed and violently cleaning the gutters. If I could run, I'd run for miles until I collapsed from asthma or the exertion. But my legs are still wobbly and uncoordinated, despite my daily walks, and if I try to run I look like an uncoordinated puppet, and I can only go a couple of steps.

Ben tells me it's normal to feel anger after all that I've been through, but while it's reassuring to know I'm not a total freak, I don't like feeling like this. I hate it. I want to be peaceful, calm, and loving towards other people. I don't want to shout at stupid things on the television. I don't want to get impatient and upset with my kids when they play happily at night and I just want peace and quiet. I'm sick of the daily effort involved in staying calm, to stay positive, to be grateful for being alive and physically healthy, to trust that I will survive cancer for many decades to come. It seems incredibly rude to be given such a strong reminder of my own mortality. But maybe I needed it to turn my life around, to focus on my children more than on my career, to stop trying to "save the world" as Ben puts it, and to work on saving myself.

So it was helpful to find these things about cancer anger
http://www.wherewegonow.com/debbies-blog/coping-cancer-anger

http://www.wherewegonow.com/debbies-blog/survivors-nest-five-tips-coping-cancer-anger-home

http://www.dailymail.co.uk/health/article-2003214/Cancer-survivors-Depression-exhaustion-anger-downside-beating-disease.html

And this article about the relationship between physical and emotional pain

http://sanlab.psych.ucla.edu/papers_files/Eisenberger(2012)CDPS.pdfhor

and to get this practice from Rick Hanson (author of Buddha's Brain) on being at peace with the pain of others. I need to apply it to myself

---------- Forwarded message ----------
From: Rick Hanson <news@rickhanson.net>
Date: Sat, Sep 13, 2014 at 8:14 AM
Subject: Being at peace with the pain of others - Just One Thing

Hello, One of the most challenging things to do in our relationships is to be both caring about the pain of others . . . and in one's core be at peace with it. This is a tricky path to walk, threading your way over uncertain ground between indifference or dismissal on the one hand and enmeshment and overwhelm on the other. And for me personally, lately I've needed to try to find this path for myself. So I hope you will enjoy this week's practice:being at peace with the pain of others. Warmly, Rick #143 | 9/12/14    Just One Thing Just One Thing (JOT) is the free newsletter that suggests a simple practice each week for more joy, more fulfilling relationships, and more peace of mind. A small thing repeated routinely adds up over time to produce big results.  Just one thing that could change your life. (© Rick Hanson, 2014) Click the button above or text JUSTONETHING to 22828 to subscribe to Just One Thing. (You can unsubscribe any time.) Gohere for an archive of past JOTs.     This comes from Rick Hanson, Ph.D., neuropsychologist, New York Times best-selling author, Advisory Board member of the Greater Good Science Center at UC Berkeley, and invited lecturer at Oxford, Stanford, and Harvard universities. See Rick'sworkshops and lectures.  Taught by Rick Hanson, PhD, this yearlong program uses the power of positive neuroplasticity to hardwire more happiness, resilience, self-worth, love and peace into your brain and your life. Register today!  Can you stay open to the pain of others? The Practice  Being at peace with the pain of others. Why? Humans are an empathic, compassionate, and loving species, so it is natural to feel sad, worried, or fiery about the troubles and pain of other people. (And about those of cats and dogs and other animals, but I'll focus on human beings here.) Long ago, the Buddha spoke of the "first dart" of unavoidablephysical pain. Given our hardwired nature as social beings, when those we care about are threatened or suffer, there is another kind of first dart: unavoidable emotional pain. For example, if you heard about people who go to bed hungry - as a billion of us do each night - of course your heart would be moved. I'm usually a pretty calm guy, but when I visited Haiti, I was in a cold rage at the appalling conditions in which most people there lived. On a lesser scale but still real, a friend's son has just started college and is calling home to tell his mom how lonely and miserable he feels; of course she's worried and upset. But then - as the Buddha continued with his metaphor - there are the second darts we throw ourselves: rehashing past events, writing angry mental emails in the middle of the night, anxious rumination, thinking you're responsible when you're not, feeling flooded or overwhelmed or drained, getting sucked into conflicts between others, etc. etc. Most of our stresses and upsets come from these second darts: needless suffering that we cause ourselves - the opposite of being at peace. Our second darts also get in the way of making things better. You've probably had the experience of talking with someone about something painful to you, but this person was so rattled by your pain that he or she couldn't just listen, and had to give you advice, or say you were making a big deal out of nothing, or jump out of the conversation, or even blame you for your own pain! In other words, when others are not at peace with our pain, they have a hard time being open, compassionate, supportive, and helpful with it. And the reverse is true whenwe are not at peace ourselves with the pain of others. So how do you do it? How do you find that sweet spot in which you are open, caring, and brave enough to let others land in your heart . . . while also staying balanced, centered, and at peace in your core? How?  Keep a warm heart Let the pain of the other person wash through you. Don't resist it. Opening your heart, finding compassion - the sincere wish that a being not suffer - will lift and fuel you to bear the other's pain. We long to feel received by others; turn it around: your openness to another person, your willingness to be moved, is one of the greatest gifts you can offer. To sustain this openness, it helps to have a sense of your own body. Tune into breathing, and steady the sense of being here with the other person's issues and distress overthere. Have heart for yourself as well. It's often hard to bear the pain of others, especially if you feel helpless to do anything about it. It's OK if your response is not perfect. When you know your heart is sincere, you don't have to prove yourself to others. Know that you are truly a good person; you are, really, warts and all, and knowing this fact will help you stay authentically open to others. Do what you can Nkosi Johnson was born in South Africa with HIV in 1989 and he died 12 years later - after becoming a national advocate for people with HIV/AIDS. I think often of something he said, paraphrased slightly here: "Do what you can, with what you've been given, in the place where you are, with the time that you have." Do what you can - and know that you have done it, which brings a peace. And then, face the facts of your limitations - another source of peace. One of the hardest things for me - and most parents - is to feel keenly the struggles and pain of my kids . . . and know that there is nothing I can do about it. That's a first dart, for sure. But when I think that I have more influence than I actually do, and start giving my dad-ish advice and getting all invested in the result, second darts start landing on me - and on others. See the big picture Whatever the pain of another person happens to be - perhaps due to illness, family quarrel, poverty, aging, depression, stressful job, worry about a child, disappointment in love, or the devastation of war - it is made up of many parts (emotions, sensations, thoughts, etc.) that are the result of a vast web of causes. When you recognize this truth, it is strangely calming. You still care about the other person and you do what you can, but you see that this pain and its causes are a tiny part of a larger and mostly impersonal whole. This recognition of the whole - the whole of one person's life, of the past emerging into the present, of the natural world, of physical reality altogether - tends to settle down the neural networks in the top middle of the brain that ruminate and agitate. It also tends to activate and strengthen neural networks on the sides of the brain that support spacious mindfulness, staying in the present, taking life less personally - and a growing sense of peace.

Cleveland Clinic videos and an article on patient experience and empathy

Ben sent me this link today. The LGH are moving towards patient-centred care, and is distributing this video on empathy to all staff

https://www.google.com.au/search?site=&source=hp&ei=E6gHVNS5HIWD8gWKwIGoDg&q=cleveland+clinic+patient+experience+video&oq=cleveland+clibic+patient+&gs_l=mobile-gws-hp.1.1.0i13l5.3527.14361.0.18141.26.26.0.4.4.1.913.13444.3-12j4j4j6.26.0....0...1c.1.52.mobile-gws-hp..7.19.6284.0.8g3BwbRVp_c

This second one brought tears to my eyes
https://www.youtube.com/watch?v=1e1JxPCDme4

This article, summarising a patient experience and innovation summit,  has some great ideas and insights:

http://www.beckershospitalreview.com/quality/innovating-the-patient-experience-with-empathy-a-recap-of-cleveland-clinic-s-summit.html

And the two links within this article are also great
http://www.communicatewithheart.org/Newsroom.aspx

This is a powerful and touching video.

https://www.google.com.au/search?site=&source=hp&ei=E6gHVNS5HIWD8gWKwIGoDg&q=cleveland+clinic+patient+experience+video&oq=cleveland+clibic+patient+&gs_l=mobile-gws-hp.1.1.0i13l5.3527.14361.0.18141.26.26.0.4.4.1.913.13444.3-12j4j4j6.26.0....0...1c.1.52.mobile-gws-hp..7.19.6284.0.8g3BwbRVp_c

I used to think I empathised with patients and practiced
patient-centred care before I became a patient myself. The perspective
is completely different on the other side, as many of you know from
your own experiences. When you're very unwell, or in pain, or in
shock, or worried about your known or unknown diagnosis, or simply
exhausted, it's very hard to take in all the information you're given
by well-meaning clinicians. I discovered that my familiarity with the
conditions I saw as a neuropsychologist possibly made me less aware of
how unfamiliar, frightening, and overwhelming the experience of being
a patient was for my patients. I maintained what I hoped was a
supportive and empathic yet cheerful and encouraging  disposition, not knowing that I would
experience being on the receiving end of similar approaches, and
finding that it made it harder for me to express my feelings and
concerns, and to ask questions. I didn't want to be a difficult
patient. I found the cheerful, competent clinical facade, and the empathetic one, difficult to
penetrate as a patient.  I still do, and I'm reasonably well-informed
and assertive. Imagine how it is for people with poor health literacy,
cognitive impairment, ESL, acute illness, pain… I didn't realise just how hard it is to say what you're feeling, to ask the questions that you really want answered, but don't have the courage to speak. I can't tell you how many times I have felt frustrated because I didn't say exactly how I was feeling, or asked the questions that were bothering me. We're so used to being polite and answering the question "how are you?" with the socially correct "fine, thanks." It's only rarely that people say that they feel awful - I sometimes corrected myself and said I felt like crap, but that invites a longer interaction, and as a patient, you're aware of the demands on clinicians time from having other patients and administrative duties, you don't want to waste their time on you. But of course, patients are the reason why clinicians are there, and they won't get the best possible care if they don't have the chance to say how they really feel.

I don't think there's one answer to the problem - perhaps one solution
would be to sit beside the hospitalised patient, rather than looking down
at them, and asking them how they really feel, what they're
experiencing, and if they have any questions or concerns that haven't
been addressed yet. And asking the same questions for all our patients. Our
efficiency and expertise and need to remain dispassionate and
objective with our patients can inadvertently create distance between
us and the patients we are trying to help. Maybe we need to remember
to break down that barrier with every patient we see, to create a
bridge that allows them to convey their fears, hopes, and questions,
so that we can inform and reassure them from their space as a patient,
not ours as clinicians who have seen it many times before. Simple things like sitting on the bed or at the bedside, making prolonged - not cursory - eye contact, can signal to the patient that you have the time to talk to them, and are willing to hear what they have to say. Even appropriate physical contact can make the interaction more human and less impersonal to patients, particularly inpatients, whose bodies are regularly treated as impersonal objects to be probed with thermometers, pricked with needles, and compressed for blood pressure readings. I remember my anxiety literally falling away when my neurosurgeon sat on my bed and put his hand on my shin, the gesture was so reassuring, even though what he had to say wasn't the best: "you had a grade IV glioma. It can't be cured, but it can be treated." 
Many clinicians  are probably doing some of these things already - I thought I was, but being a patient
was a big wake-up call to realise all the things I could have done better. Like sitting down at the bedside every time, and gently touching someone's hand - I remember some patients holding my hand in theirs if I did that, and when I was an inpatient, I would sometimes reach out to hold a nurse's hand - I felt like a prisoner trapped in a dysfunctional body, and craved some human contact that didn't involve   instruments of any sort. 

I feel like these resources from the Cleveland Clinic cover many of the things I wanted to say at the conference, and more - so if I share them when I give my presentation, it will allow me to focus on any unique insights or experiences that might be left for me - like what it's like to be a neuropsychologist who had a brain tumour, how damned frightening it was to see that initial scan, and how ecstatic I was to get through two craniotomies with life, cognition, and sense of humour intact. I was looking at the photos taken around that time, one year ago (September 4th to 14th, 2013), and it was wonderful to be reminded of how happy we were, once the surgical treatment was over. The combined chemo and radiotherapy was rather torrid, as was the resulting pancytopenia and cancer-related fatigue, and all the other dramas I've experienced, but I've been feeling full of energy these past few weeks, and the bad times seem like a distant memory.

I must walk Ginny and hang out the laundry before the boys get home. I hope you're all having a wonderful Spring day.

Superman challenge (wear your undies on the outside)

I've just set up a fundraising page at Rare cancers Australia - information on my Superman challenge and rare cancers here.

http://www.rarecancers.org.au/my-fundraising/69/superman-challenge-wear-your-undies-on-the-outside

Basically, just wear your undies on the outside (you can be creative if you're shy, e.g., on your head), take a photo, share it on Facebook, and challenge your friends to do the same. Or just donate. The money goes to Rare Cancers Australia

Your ideas, please

Hi to everyone who has been reading.
I'd really appreciate your assistance in helping me identify the main themes or issues that I should try to address in my 30 minutes at the conference.

I'm wondering if I should do it in three parts - 1. the experience of being a patient (the good, the bad, and the ugly?), 2. the experience of having cancer and all the complications and what it's like to be a patient, 3. the experience of having  a brain tumour or two

What have you learnt from my experiences that would be important to share with other clinicians?

On the earlier post where I brainstormed ideas, which of the numbered points do you think are most important to cover?

Please email me using the contact form at the side, or via normal email if you know my email address already.

I can talk about what I've learnt and experienced for hours, but I need to condense it into the most important issues and cover them in 30 minutes.

Thanks in advance

Fiona

Giving a talk on what I've learnt in 30 minutes - what I really want to convey to my colleagues

Good news. The conference committee have offered me a 30minute spot to give the talk that I wanted to do in 60 minutes (a three-hour workshop would have been better, but I didn't ask for that because I didn't want to commit to a lengthy presentation in case it tired me out too much)

I spent most of the day yesterday rewriting my title and abstract for the 30 minute talk.

Title:
Role reversal: on being a patient.

Abstract
Patient-centred care enables patients to be active participants in

their clinical care, resulting in improved perceived healthcare. The
two models of care were experienced by a neuropsychologist who became
a patient. Traditional care was generally characterised by supportive
attitudes and practices, but was perceived to be driven by standard
procedures and protocols. It was reassuring and appreciated during
periods of significant illness when the ability to actively engage in
treatment decisions was low. A patient-centred approach to
rehabilitation gave a sense of engagement, motivation, empowerment,

and achievement. This approach would have been difficult to apply

during times of acute illness or postoperative recovery. Consumer

experiences of receiving healthcare services can provide valuable

insights for clinicians, perhaps particularly so if the patient is
also a clinician.


It's very formal, and a bit boring to read, I wasn't entirely happy with it, but my confidence has taken a battering from this whole thing, and I wanted to play it safe.

Then inspiration hit this morning, and I came up with this new title and abstract

Surviving Glioblastoma Multiforme: a neuropsychologist's experience.

Abstract
Glioblastoma multiforme (GBM) is one of the most aggressive forms of
brain cancer, with a median survival rate of 3 months, and a 5-year
survival rate of only 5%. Recent research has resulted in
significantly improved survival times for GBM patients treated with
Valgancyclovir, an antiviral drug for cytomegalovirus (CMV)
infections. CMV is involved in nearly all high grade gliomas, with the
viral load of the tumour sample being related to prognostic outcomes.
Treatment with Valgancyclovir was commenced along with standard
chemotherapy and radiotherapy shortly after two craniotomies for
multifocal GBM (left occipital, right parietal) in September 2013.
Regular MRIs have shown overall improvement, with no tumour
progression or recurrence. This presentation will briefly summarise
the research on Valgancyclovir and GBMs, discuss a neuropsychologist's
experience of having had GBM, and explore the implications and
opportunities for neuropsychological practice.

Ben said it sounded like I was going to focus the talk on me (well, what else is a patient's perspective about?), and another friend (who hasn't read the abstract yet) said that it sounded like a significant deviation from the original proposal to talk about patient-centred care from a consumer's perspective, and was dubious about the validity of the research (I think I can evaluate research for myself reasonably well, I didn't spend 7 years on a PhD for nothing). I reassured them that I would still attempt to cover everything in the available time

So I'm wondering if I should try to combine the two titles and abstracts (abstract should be about 100 words long):

3rd Title:
Surviving GBM: a neuropsychologist's experience of patient-centred care

3rd Abstract

This presentation will discuss a neuropsychologist's experience of traditional and patient-centred care in the context of treatment for GBM, and explore the implications and opportunities for neuropsychological practice. Traditional care was generally characterised by supportive attitudes and practices, but was perceived to be driven by standard procedures and protocols. It was reassuring and appreciated during periods of significant illness when the ability to actively engage in treatment decisions was low. A patient-centred approach to rehabilitation gave a sense of engagement, motivation, empowerment, and achievement. This approach would have been difficult to apply during times of acute illness or postoperative recovery. Consumer experiences of receiving healthcare services can provide valuable insights for clinicians, perhaps particularly so if the patient is

also a clinician.

I've only received two emails about the GBM-focussed abstract, one supportive, one wondering if I was going to give a totally different talk. I'm probably being a nuisance to the conference committee, but I have so much to say, and I don't know how I'm going to do it justice in 30 minutes. Also, I want the talk to be interesting to neuropsychologists, and I know the GBM angle will be more appealing than a pure Patient-centred vs traditional care approach.

If I didn't have a life-threatening condition that may prevent me from presenting next year, I'd just cancel this year's talk, and plan for a 3-hour workshop next year. I'm not going to do that, I'm going to harvest the hay while the sun shines, or carpe diem, but it's a bloody difficult task to condense everything into 30 minutes. if I only had 10 things to say, and spoke on each one for 3 minutes, my time would be up.

Apart from all the things in the two abstracts, here are some of the other important things I wanted to share:

1. Neuropsychologists rarely get to see patients who have had brain tumours, but it should be a routine part of care. Patients and carers need education about the sequelae of brain tumours, from the effects of the steroids, to cancer-related fatigue, concentration difficulties, and specific impairments that arise from focal brain damage. I understood the cognitive and concentration issues from being a neuropsychologist, but I had to research a lot about cancer for myself. How hard would this be for less informed patients and carers?
2. There was little continuity of care after my combined CT and RT was over. I have to keep asking when I should see the consultants again, and nothing has been provided to me in writing. I've had to take the initiative to write things down, and to request written copies of imaging reports. Again, how would lay people know to do this?
3. the acute medical model simply sweeps people up into a rather impersonal treatment schedule, which would be rather bewildering for cognitively intact patients. For those struggling with concentration, fatigue, and other cognitive issues, it would be very difficult
4. all brain tumour patients should be advised to get a Webster pack from their pharmacist, reducing the chance of taking medicines incorrectly, or in my case, accidentally taking a double dose, which resulted in my first seizure. Having to organise medicines requires good concentration, and is a considerable burden on carers.
5. Having to take many tablets each day eventually results in an aversion to medications, even in the most rational and motivated patient.Regular medication review to ensure only essential medications and supplements are taken might help reduce the development of medication noncompliance.
6. patients and carers should be seen separately by clinicians as a matter of routine practice. There are important things that patients and carers don't feel comfortable talking about in the presence of the other, and as the patient's wellbeing is affected by the wellbeing of the carer, it is vitally important that the carer is also supported
7. Experiencing nausea, pain, and fatigue, and difficulties with memory and concentration have taught me how the first three can affect motivation and ability to engage in conversations, assessment, or treatment planning. Being berated for forgetting things, repeating oneself, or having lapses of concentration affect self-esteem, and perceiving an irritated response from the patient as being irrationally irritable only makes matters worse.
8. Small doses of clonazepam, prescribed to help reduce the risk of seizures, can work wonders in reducing overstimulation in noisy environments
9. Most doctors are good or even fantastic, but some can come across as tactless and dismissive. This doesn't help a patient who is trying to be involved in discussions about their condition or clinical care.
10. My time as a patient for breast cancer and brain tumours has taught me that clinicians should respond promptly to referrals, even if only with a brief visit or phone call, because patients have to wait a lot for things to happen, and not knowing when things are going to happen increases anxiety
11. Clinicians should routinely ask patients what they would like to gain from the clinical encounter, whether it is information, advice, support, or guidance on possible treatments and other strategies. 
12. The question "how are you feeling?" can be answered on a number of levels: physical status (in pain, nauseous), mental status (muddle-headed, anxious, angry, upset…) - A clinician has to allow time for a patient to answer the question honestly, and needs to show that they are comfortable with the patient revealing their distress
13. It can be very difficult to disclose emotions when denial and repression are such effective defensive mechanisms. If a patient is coping using these defences, respect that it is a form of self-protection, and offer them other practical strategies to cope with their situation, like tip sheets, and focussing on the present, or finding the good in the current situation
14. Routine individual psychological support should be offered to all cancer patients. Support groups are not suited to everyone, and may be traumatising for some
15. The internet is a blessing and a curse. It can provide useful fact sheets and information for dealing with health conditions, but it can also provide too much information on prognostic statistics that would cause despair in people who are not trained to understand them.
16. Keeping away from sad consumer stories on support websites is a good idea if you want to avoid getting depressed about having a serious condition.
17. Information about survivor stories or new treatments can be inspiring and allow a sense of hope and optimism.
18. Being chronically ill saps one's energy and makes it hard to maintain optimism about the future.
19. Neuropsychologists usually don't get asked to see brain tumour patients preoperatively, as many tumours are classed as medical emergencies, requiring surgery as soon as possible. But there is an important role for neuropsychologists to provide postoperative education and support, and assessments for return to work or study. Cancer services are usually well-funded, so neuropsychologists might find that funding is available for sessional neuropsychology services to provide assessments, eductation and support for people with brain tumours

There are probably 20 more points I could make, as well as the observations raised in the first abstract. I don't know how I'm going to do it justice, but I'm not going to let it get me down, I want to try to do something valuable, even if I only have 30 damned minutes. I wish I'd got the abstract right in the first place, and had been given my hour spot. This would have been impossible to cover properly in a poster (it would have looked like a better organised version of the list above), but it's also a big task to condense it into 30 minutes. I want to give a talk so that I can share what I think are valuable insights with my colleagues - it's not about big-noting myself, or reporting on myself as a single case study, or even to talk about GBM. However, Valcyte  may revolutionise treatment and survival for people with high-grade gliomas, and open up a new field of practice for neuropsychologists, who need to learn about patient-centred care and to benefit from consumer perspectives on healthcare. I think I'll have to write an article that covers everything I want to say, it will reach more people and have a greater impact than a single conference presentation.

Wish me luck. I'm going to walk the dog and do some gardening tomorrow as therapy.

Tears

Visiting the radiotherapists yesterday to tell them that I'm feeling fantastic  seems to have unblocked the tears that I haven't been able to cry for so long. I mentioned in my last post that I felt surprised at how upsetting it was to see patients waiting for their radiotherapy. I didn't think about it much afterwards, but I woke up in tears in the wee hours of this morning, grieving for all the things that I've lost: 19 months of my life are documented in this blog, but for me it seems a dream-like state, punctuated by admissions to hospital, occasionally seeing friends and family, one holiday, and endless scans, blood tests, and IV therapies. I was also crying for the loss of my secure identity in my career. I've loved neuropsychology and being a neuropsychologist since 1990, but now I don't know if I'll be able to do it again, well, not until I've had some therapy to make me brave enough to see patients again. I can't stand to see people suffering. The news images of James Foley, the US journalist brutally beheaded by Isalmic State this last week, got me sobbing for the cruelty of these extremists, and for every single person throughout history who has had their life taken from them cruelly and abruptly through murder or war. There has been so much suffering throughout history, people are still suffering now, and I can't bear to think of it. But I'm finding it hard to stop. It's making me cry properly for the first time since Dad died, something I've needed to do, but haven't been able to, because I had to keep it together, to get through each day without upsetting the children, without upsetting Ben. I had to keep strong to survive, because I couldn't fall down, I couldn't give up, and now that I'm feeling well and energised again, it's like the dam of suppressed emotions is bursting.

I've been cranky and irritable the last few days, and that upsets me - I don't like taking out my frustrations on others, I feel so bad for doing so. For example, I got angry with Ben for telling me he didn't want me to get my hair cut. It was getting fluffy and curly and unmanageable, and the only way I could deal with it was by wearing a beanie all the time. I told him (with more emotion than was necessary) that it was my hair and I didn't care if he doesn't like it short. I never liked its fine texture and the difficulty I had styling it, and now that I know that very short hair suits me, I never want to have it long again. Besides, growing it out will drive me crazy. He doesn't cut his hair the way I want him to, so why should I have my hair the way he wants? I had it cut yesterday, and he said it looks good because it was straight. He doesn't understand that the hairdresser could making it straight because she has the skill and the tools, but for me to do it when it's only an inch long is very difficult - the hair straightener won't work on such short hair, and the hairdryer makes it stick up if I'm not careful. I've had to put a lot of styling wax in it to get it to sit flat, and I'm using my beanie to try to suppress the errant curls at the back. If this hairstyle doesn't work, I'm going to go much shorter. I have enough things to bother me without my hair making me feel ugly.

(Big sigh) Gosh, writing helps me process my emotions so much, I'm feeling calmer now and more centred, though the tears start to well up again if I think about the patients I saw yesterday, or that poor journalist and his family. I find myself hoping that the barbarians who did it get blown to pieces by a missile, and that distresses me, because I usually find the death penalty abhorrent. But I can't find any compassion for men who will murder innocent people, kidnap a thousand women, trap families on a mountain, force people to convert to Islam or execute them. There is no love or compassion in their hearts, just pure evil, and I want to see it obliterated off the face of the earth. Which isn't a loving thing to wish. I should be able to find compassion for them, for the society and conditioning that transformed them from innocent, perfect babies into monsters. (Sigh) This helps: Imagine them as beautiful newborn babies, with love and hope in their hearts, and feel compassion and sadness for the process that turned them into what they are. Feel sadness that they think they should behave this way, that their belief system supports this kind of behaviour. Grieve for their mothers and sisters and grandmothers, who loved them as babies and infants and have seen them transformed into monsters. That's much more comfortable than wishing for the monsters to die, doing so makes me similar to them.

Oh God, I'm feeling awful. I'm glad we're going to Melbourne this weekend to see Ben's sister and her family while they visit from Vienna, and to catch up with a few friends. I'm still feeling disappointed that the reviewers recommended that my 1-hour presentation be downgraded to a poster, and that the chair of the scientific committee followed their advice. I know that at least 20 people think my presentation would have been valuable, and that a wrong decision was made, but it still saddens me. I'd been thinking about the presentation for months, planning what I would say, thinking about the insights and awareness that I wanted to share with my colleagues so that they could benefit from my experience.
I'll have to write it up instead, which will allow me to share with a wider audience. I'm still disappointed though, because I love my profession and felt like it was one big family, and I want to keep sharing things with them. The thought of attending the conference without being able to do a formal presentation that would legitimise my attendance (I have an irrational need to feel involved when I go to the conference) makes me feel very self-conscious. I've shared my experiences on this blog, and in far less detail via email to the neuropsych mailing list, and I feel very exposed. I know that I have lots of friends and supporters, but I'm afraid that some will think I'm an attention-seeker, that my tumours have made me disinhibited or somehow impaired. My greatest impairment, right now, is not knowing what I will do in the future, what role I could have as a professional, how I'll be able to earn an income if I can't see patients. I could work part-time and offer part of my position to a neuropsych registrar - with some therapy, I should be ok to supervise a registrar or students - but hearing patient stories second-hand might still be upsetting.

My manager at work suggested that I might need to get medical clearance and a neuropsych assessment before returning to work - I'll check on that with my oncologist. Finding someone to do an assessment would be difficult - I couldn't be assessed by someone I know, I'd probably have to see someone in America or New Zealand. The thought of being assessed is perversely hilarious, given my familiarity with our tests. I nearly had all the digit span sequences memorised, I can still recite them now. I suppose the assessor could make up new sequences of random numbers, but I don't see what the point of an assessment would be. I know I get cancer-related fatigue, I know I can't multi-task like I used to, I know I get emotional when faced with the suffering of others. I'm aware of the problems I might have if I do direct clinical work. My left occipital tumour has caused a quadrantanopia, my right parietal tumour may have affected my visuospatial abilities, but I don't need them at work. I'll ask my oncologist what he thinks when the time comes that I might be consistently well enough to return to some sort of work. For the moment, I need to work on dealing with my previously suppressed emotions, and sending out love, light, and peace to all sentient beings, past, present and future. There's a beautiful story in a book I can't find right now, about Avalokitesvara, a bodhisattva who reached enlightenment, and on seeing the endless cycle of suffering, death and rebirth in all sentient beings, promised not to go to the glorious Buddha-fields after her death, but to keep returning to a human form until every sentient being had been relieved of suffering and all its causes. In the story, she transmitted the Heart Sutra: gate, gate, paragate, parasamgate, bodhi svaha (Other stories say that Avalokitesvara was male. The Dalai Lama is an emanation of this being). I like the idea of a female incarnation.

Unlike my friend Debbie, who has been studying Tibetan Buddhism very seriously for years, I've only dabbled around the edges, and haven't begun to practice properly, but I find that everything I read makes me feel calmer and more optimistic about the world and our collective future.

There are lots of resources about the Heart Sutra on the internet, if you're interested. I found this version of the story here: http://www.wildmind.org/mantras/figures/gategate

Repeating the Heart Sutra always makes me feel as if my heart is expanding and growing lighter, less troubled by whatever concerns me. I chanted it to myself yesterday as I walked from the city to the hospital, and I'll do it again now as I pack for a brief trip to Melbourne.

Avalokiteshvara Bodhisattva,
when pursuing the deep prajñaparamita,
recognized the five skandhas as completely empty
and passed beyond all vexations and distress.

Shariputra, appearances are not different from emptiness,
emptiness is not different to appearances.
Appearances are emptiness,
emptiness is an appearance.

Impressions, thoughts, associations
and knowing too, are also like this.
Shariputra, all dharmas are empty of appearances,
are not created, are not extinguished,
are not defiled, are not pure;
do not increase, do not decrease.

For this reason, amidst emptiness there are no appearances,
nor are there any impressions, thoughts, associations and knowing,
There is no eye, ear, nose, tongue, touch, ideas.
There are no colors, sounds, smells,
tastes and touch dharmas.
There is no eye-element up to no imagining nor knowledge element.
Neither is any non-understanding,
nor is there any end to non-understanding up to no old-age and death.
Neither is there any end to old-age and death.
There is no suffering, cause, extinction or path.
There is no knowledge nor anything to find.

Because there isn’t anything to find,
the bodhisattva is free because of relying upon prajñaparamita:
a heart without any obstruction.

Because there are no obstructions, there is no fear.
Abandoning, overturning dreams and concepts,
finally reaches nirvana.

Because all the Buddhas of the three times have relied upon prajñaparamita, they have found anuttarasamyaksambodhi.

For this reason, know prajñaparamita is the great spiritual mantra.
The great understanding mantra.
The supreme mantra.
The unequaled mantra, able to cut through all vexation
because in reality there is no emptiness.

Speak the prajñaparamita mantra, speak the mantra’s words:

gate gate paragate parasamgate bodhi svaha.

(Chinese to English translation, by Willam J. Giddings, 2003)