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)

Another excellent day, and a surprising visit to the cancer clinic

It was a superbly sunny day today: cold and crisp in the morning, but the sun was so warm, it's lovely to be out walking in the mornings. I didn't nap at all today - I reclined on the sofa and had a long talk to my old housemate, Debbie, for a couple of hours after lunch. We never run out of things to talk about, just like the first time we met in our house in Barkly St, Carlton, where I sat on the stairs and she sat on the floor and we talked for several hours. It's so good to have friends like that, I love to learn things from people who read widely and intensely like Deb does, she's a remarkable woman.

I slept badly last night, thanks to taking too much prune juice in the evening to overcome what Nathaniel once described as "spiky poo". Paradoxically, I woke up feeling refreshed and full of energy, and managed to get through the day without feeling too tired.

I had "overnight oats" with berries at Inside Cafe in Paterson St (there was a fruit compote that was too sweet to eat), and was disturbed by reading the story of the barbaric murder of the American journalist by Islamic State. It's such an atrocity, I can't let the kids watch the news at the moment with all the terrible things that are happening in the world. There's evidence that children get vicariously traumatised by watching news footage of tragic events, and I know that I do too. My dreams are far more serene when my mind isn't polluted with images of violence, mayhem, and tragedy. I pray for world peace each night. Sadly, some people don't share the desire for peace.

I had a haircut in St John St at 9am, then walked all the way up to the hospital, staying on the sunny side of the street. It was a good walk with a slight uphill gradient, and I arrived at my friend Emma's office only slightly out of breath and needing water. Emma has inherited my old work laptop, and I found several of my old files backed up on it. I saved them to a memory stick, and backed it up to my laptop at home. Having those files, along with the ones I'd saved to dropbox, and to our home computer, means that I should have nearly all of the files that I lost with the missing USB sticks in the May holidays. I'd still rather have the missing files, but it seems they're irretrievably lost. The resort where we stayed have not gotten back to me despite three phone calls, the hire care company has nothing matching the description I gave in their lost property, and they're not at my cousin's place. Serves me right for not backing them up somewhere else.

I had to go to the Holman Clinic to get my infusaport flushed at 11. They didn't have any spare chairs in the chemo clinic, so they told me to lie on the bed in one of the rooms to the side. I looked at the bed and felt very strongly opposed to even sitting on it. I've had enough of hospital beds, and I hope I never need one again. So I put my things on the bed and sat in the chair, and Bec, the lovely nurse (they're all lovely down there), got the needle in first try and flushed my port. I need to do it again in 6 to 8 weeks. Hooray!

Sue, the breast cancer nurse, was looking for me (she must check the appointments for any of her patients), so it was lovely to catch up with her. She asked why I hadn't had the second mastectomy earlier this month. I explained that we'd been advised to have another breast MRI first, to see if there was any change. Even though there was a little more calcification on my January mammogram, the ultrasound was normal, and the MRI didn't show anything. So I'm scheduled to have the MRI on October 3rd at the Royal Hobart Hospital. I hope there's nothing to worry about. My risk of getting a recurrence of breast cancer was only supposed to be 2.5% after I completed chemo and radiation.

I went to see the radiation team after saying hi to all the people in chemo. It's nice to visit them, especially when I'm feeling so good. One of the radiation girls said she'd been thinking of me, and they were glad to see I was doing so well.

Walking out through the radiation waiting room was surprisingly upsetting. People who are undergoing radiation have usually either completed their chemo, are too sick to get chemo, or are having it concurrently. When I used to go there, I used to keep to myself and the jigsaw puzzle, and I didn't interact with the other patients. Seeing them all there today, looking tired, stressed and with grey complexions, was very distressing. It brought it all back to me, and made me realise what an ordeal it was to go through all that chemo and radiotherapy. It was a traumatic experience, and I just wanted to escape as quickly as I could. I bumped into Sue on the way out, and told her what I was experiencing, and she wasn't surprised. She said it's a common reaction for people who have been through treatment. It was reassuring to know that I'm not alone. But it makes me more determined to get psychological help to deal with what I've been through. At the time, I was just in survival mode, taking one hour, one day, one week at a time, and it wasn't too bad. But seeing other people going through similar treatments is just too much. At the moment, I don't know if I'll ever be able to go back to clinical work. Seeing people who are ill is just too real, too upsetting. I certainly wouldn't cope well with a cancer support group.

It's all rather paradoxical - I can write candidly here, and talk to people about my experiences, but I can't bear the thought of seeing other people who have suffered, or hearing their stories. I think I might be afraid of having a traumatic reaction, like I did today. I've been able to get through the past 19 months without being too traumatised, because I was always staying in the present. But if I encounter something that makes me look back, I'm confronted with the true horror of what I went through. As a result, I don't know that I'll be able to turn this blog into a book - I don't want to write a retrospective account of what happened, but maybe I could collate some of these posts into a book - or maybe I should just make this blog open to the public. I don't want to spend time writing something new at present, I want to have more days like today, when I felt full of energy and enthusiasm for life. It was incredible to feel so good after feeling unwell for so long.

The only problem with having more energy is that I get more irritable and cranky than I used to. I hate being irritable, and I hate finding myself getting annoyed by little things. I liked it better when I was so tired that I didn't have the energy to get upset by things. I thought that I'd achieved a zen-like contentment with the world, but it was obviously related to my energy levels, rather than a rapid attainment of self-mastery. What a pity. I'll have to achieve self-mastery the traditional way.

Must sleep now, perchance to dream

To tell or not to tell others if you have a serious illness?

I had a liberating morning doing some shopping in Launceston. It was -2C this morning, but the sunshine warmed things up, and I managed to find some smart clothes for the boys at quite reasonable prices, including two Pumpkin Patch jackets for Nathaniel at $15 each. Carrying the shopping around made me realise I need to do some upper body weights - my arms were heavy and achy in the afternoon, and I slept deeply from 130-5. I'm still tired, so this won't be a long post.

Ben gave me a ride home from town, and I had one of those lightbulb moments where I realised something I should have known before. If a person is diagnosed with a  very serious illness, like I was, then it's very confronting for other people to be told about it. They'd probably prefer not to know, depending on their own experience of serious illness, and their own coping mechanisms. I've never had a problem with knowing about others' illnesses, though being told by my cousin Marita that she was dying, just after Dad died in February 2012, was difficult to handle. I knew she wasn't well, but she seemed very much alive to me, right up until the last time I saw her. She managed her suffering so discretely, I didn't avoid visiting her like I did with my father, who was miserable and highly dependent on others - it broke my heart to see him like that. (I wrote a post about it on my other blog, neuropsychbookwork, titled "why neuropsychology is important".

The lightbulb moment was understanding that our culture is not comfortable with the idea of death and dying (knew that already), and that if someone announces they have condition that may lead to their untimely demise (like my brain tumours), it makes people have to confront their fears of death, dying, suffering, and denial of our mortality. Keeping in contact with someone who has such a condition can be too much for some people to bear, leading to the common comment after someone, usually someone elderly, suffers an acute health event like a heart attack or stroke "it would be better if it was over quickly, so that they don't have to suffer." This kind of thinking is couched in terms of wanting the patient not to suffer, but it also comes from a place of not being comfortable with the idea of seeing someone suffer, or actually doing it. My father suffered for several years before he died, but he was still able to enjoy music, physical contact, and our presence up until the end. Even people with profound dementia have been shown to benefit emotionally from companionship and pleasant music, having less behavioural issues afterwards, compared to agitation after unpleasant interactions and music they dislike.

I have the chorus of Lenny Kravitz's song "it ain't over 'til it's over" on a loop in my head as I write. Even if someone is on their deathbed, they are still probably aware of their environment at some level. Someone with a potentially terminal illness shouldn't be avoided because they might die some day. If we took that approach, we wouldn't see anyone. We're all going to die some day. People with incurable conditions are just going to do it sooner, and it's an uncomfortable thing for us to face. But should we deny them our company or contact just because we feel uncomfortable? Far better to rejoice in every day that each of us is alive, to accept that death will claim us all in the end, and to seize each day for the gift it is. Carpe diem!

So, if I could do it again - I probably wouldn't tell many people how serious my brain tumours might be. I feel like I've marked myself with a big target, and that some people are avoiding me like the plague because they're uncomfortable with my frankness. My school friends used to say I was the "biggest brain in the maths class without a calculator, but has no common sense."I think that still holds true. My tendency to be open and honest in sharing information with others has made people uncomfortable, and I'm feeling a little alone and foolish. It's hard to stop being open and honest, it would be suppressing part of my nature, but maybe I should have been more discreet. Oh well, I've learnt and developed from the experience, and maybe others have as well.

A sunny weekend and some spring cleaning

I've been feeling pretty good the last few days. It helps that the weather's been sunny, and that I've had Ben and the boys home for company, but I've managed to get through two days without napping, and have eaten well without any nausea or appetite loss as well. We stopped using Disulfirim (Antabuse) because it may have been causing the nausea. I was taking it because in experimental studies it causes GBM cells to absorb copper, which can help kill them, though I'm not sure the evidence for efficacy in humans is there yet. It's part of the "cocktail" approach to GBMs, where people take a whole range of treatments that might help control the spread and progression of the cancer. The problem with this approach is not knowing which treatments are effective or not, and that one ends up getting sick of taking multiple tablets each day. Keeping track of everything can almost become a full-time occupation.

I won't write for long tonight, as it's 920pm and my jaw is getting that slightly numb, slightly twitchy feeling that I get if I'm overtired (the same feeling that preceded my two seizures, only without the aura). I'll take half a clonazepam as a precaution. I don't want to have another seizure, it will delay my return to driving from January until later next year. I think you used to have to wait 6 months after a seizure until you could drive again, but I've heard that it might now be 12 months.

I saw the optometrist yesterday because I lost my multifocal glasses in Queensland last school holidays, and because my vision feels blurry. He said my vision is almost 20/20, but that I'm more short-sighted in my right eye than I used to be, and that the feeling of blurriness is due to "posterior crystalline lens opacity" - i.e., the beginnings of cataracts. Bugger. I'm only 47 - he said it's not unusual for people to start experiencing this at my age. I asked if using sunglasses helps prevent cataracts, he said the evidence is mixed. No wonder it feels like I'm looking at things through a tissue at times. He recommended getting glasses for clearer distance vision, if I want them, but thought I should not get multifocals again, as I was hardly using them.

We took the boys for a bike ride down at Royal Park this morning. It was a glorious sunny morning with lots of happy walkers and their dogs enjoying the warmth. The tide was lower than I've seen it in ages, and the silt that remained in the river was fairly stinky. We had lunch at Mee Wah, for want of not knowing a better chinese restaurant that was open, and the boys both did a good job with their chopsticks and table manners. They were even engaging in decent conversation, which was better than yesterday, when they strenuously objected to being driven to Evandale for dessert. When I was their age, I used to nag mum and dad to take us out for drives, because I hated being stuck in the hoist, and I loved seeing the countryside and spending time talking to my parents. Dad didn't mind, he loved going for drives, and he always had interesting stories to tell about the different towns and people who lived there. Our kids are happy to stay home all weekend, they're too comfortable with their electronic amusements, and they're missing out on a diversity of experiences as a result. I felt exhilarated and alive again from the drive down to Perth and then across to Evandale, where we found a great cafe in the old Municipal Hall, called Ingleside Bakery. It's a grand old building with a very high ceiling and fancy Victorian cornices, fireplace, and ceiling rose. The colour scheme was dramatic - olive green on the cornices and ceiling rose, and a plum-like purple either side of the chimney, and a more neutral cream on the other walls which served as a backdrop to a good selection of paintings by local artists. There was a wide range of local foods and gift items for sale, and it reminded me of the kind of places I've loved going to before I got ill - quaint country towns, eclectic cafes and gift shops, if Tasssie had a bigger population, Evandale could be like Daylesford in Victoria, or Montville/Maleny in Queensland, or Amherst in Massachusetts. To be fair, Tasmania has a decent number of pretty country towns with quaint old buildings, but it is rare for any of them to have more than one or two good places to eat. There just aren't enough local customers to sustain them.

I had a baked blackberry cheesecake, a sweet indulgence that hopefully won't encourage glucose-promoted growth in any remaining GBM cells. I've been avoiding sugar and fructose for nearly a year now, in an attempt to starve the little blighters. I've felt so good the last few days, it was almost like my pre-GBM recovery from the breast cancer treatment, when I imagined a future with a very low chance of breast cancer recurrence. It's annoying that my jaw gets twitchy, and that I stumble over my words at times - it makes me realise I may always have to be vigilant for signs that unwanted things are growing in my brain.  I must be due for another MRI soon. I'll have to check.

Walking down at the park today, I noticed a number of young women striding out in summery dresses, and I wondered if the tendency of young, fertile women to wear revealing clothes in sunny spring weather is associated with hormonally-driven mating behaviours, and if a similar thing is responsible for the desire to embark on spring-cleaning when the weather starts to improve - a kind of nest-building activity? I haven't noticed older women stripping off their warm outer layers with such wanton abandon as the young, and I remember how it felt to be a teenager and young woman in the springtime - there was almost a compulsion to wear light and subtly revealing clothes, seen en masse in the boarding house, where we would sit outside in the sun with our skirts subtly hitched up, less subtly so if there were any boys around. There could be an observational study in this for someone.

One last thing before I go - I asked Ben if he could tell me why I feel reluctant to go to the conference this year if I'm not presenting a paper. He thinks it's because I'm worried about having to tell multiple people how I'm doing, which would be more traumatic than presenting a paper on lessons I've learned from being a patient. I think he's probably right. The problem with having been open and honest with my colleagues about my health issues is that it might be uncomfortable to attend a conference with those people. Giving my presentation would have allowed me to decide on what I wanted people to know, and would have allowed me to illustrate that I'm doing pretty well for someone who has had two brain tumours removed, not to mention hopefully imparting some insights that might be helpful to the clinical practice of others. Not having a role at the conference would make me feel lost. I can't recall attending the conference without a defined role, either as a committee member, organiser, or presenter. It would be strange to attend and listen to presentations. I don't really want to do that - I have no need for PD points, and conferences were exhausting enough before I had cancer - I just want to go and see old friends and colleagues again. I miss them.

Feeling normal again - I hope it continues

I felt like my old self this afternoon - raked up 4 wheelbarrows of leaves in the back garden, walked Ginny down Hill St and back, cooked a healthy dinner, made silly jokes and teased the kids, and I'm still not tired (well, not much, anyway). I don't know if it was staying in bed until midday that did it, or the carrot/apple/beetroot/spinach/celery/pinapple juice that I had for brunch, but I hope I have more days like this (without the staying in bed so long, I prefer to get up and out in the morning, especially when it's so sunny). The juice and gardening is going to become part of my daily routine (I haven't been allowed to garden for over a year because of the risk of infection, but now my neutrophils are ok, I'm going to darned well do it). I felt like invincible, indominatible, super-Fi-Fi again. It feels so good!

Ophthalmology exam

Some of you might be interested in the results of my recent ophthalmology exam. 

They said my eyes were healthy, which is reassuring, but the reason I had it was to see how bad my visual field defect was, and if it would prevent me from driving. 

The results were as I expected - testing of each eye alone showed a pretty complete loss of vision for the lower right visual field (also known as a lower right quadrantanopia). This test was pretty demoralising. I had to put my chin on a chin-rest and fix my gaze on a central light in a white array, where white lights of varying brightness and size would flash. My job was to press a button whenever I saw a light. There was a small sound before every light that I saw, and also before lots of lights that I didn't see. I resisted the temptation to press the button anyway, because I knew these machines keep track of false positive responses. After testing the individual eyes, they got me to do it again with both eyes, which was more encouraging. The results showed that I could see reasonably well in the periphery of the lower right quadrant with binocular vision, and that there was only a small area of loss in the centre. The ophthalmologist said that this should continue to improve over a number of years, and that the current results would not prevent me from driving, though I will need to do an OT driving exam first. He recommended repeating the assessment in 4 to 6 months, and doing the driving exam after that. The OT driving assessment involves a brief cognitive screen, driving simulation tests, and if I pass, an on-road assessment with a driving instructor in a dual-control vehicle.

I've become used to the field loss - I don't get the scintillating scotoma as much as I used to, and the field loss is like an itch in my eye, particularly my right one, as if something is missing. This doesn't make sense to me while I write it, but I suppose that not being able to see things reliably in that area manifests as a sense of something being missing, unless I move my eyes from side to side, or move my head. It doesn't affect me dramatically in daily life. I have a tendency to bump into things in that area, or knock over small things on benches, but this happens rarely, and I don't like the kids standing behind me and to the right when I'm sitting down. It doesn't bother me when they stand to my left, but standing on the right gives me the sense that someone is creeping up behind me.

I used to find it more comfortable to read things on the small screen of my iPhone, as I could keep the text in the left visual field, but I've become more comfortable with larger screens over recent months. I used to also feel more comfortable watching TV or movies with my head tilted to the right, so that everything was in the left visual field, but I don't need to do that anymore.

All in all, I feel very blessed to be alive and free of tumour recurrence 11 months after they were discovered. I hope to continue doing well for many years to come.

Both eyes: Test of peripheral vision - all ok for driving. The blackest dots show a <20% loss of vision in that area

Left eye: dark area in lower left quadrant represents normal blind spot

Right eye: Showing lower right quadrantanopia, which includes the area where my blind spot would normally be for that eye

The best and worst thing about having had cancer is the gradual realisation that many of the activities we engage in are fundamentally meaningless (e.g., acquiring possessions, cleaning up those possessions, watching television, listening to the radio, going to repetitive meetings at work that rarely result in any real change, reading the news, spending time on Facebook). These things fill time, but aren't as important to me as real human interactions. Without real and meaningful interactions with people, either in person or on the telephone, I feel a sense of futility and emptiness. It's not that people don't care about me, I know they do, but to motivate myself to get out of bed and eat and exercise well each day is increasingly difficult. Being unable to drive is a big impediment to being able to engineer unplanned social contacts. I shouldn't go near the hospital where my workmates are because of the risk of infection. Going shopping or out to eat on my own just reinforces my sense of isolation. Posting this will result in messages telling me to keep my chin up, that I'm not alone, that I'm valued and appreciated, but they will only temporarily help distract me from the reality that I'm the one who has to keep creating the energy to do something each day, and that I spent much of my life defining myself by helping others or sharing knowledge through my career, something that I'm not sure I'll be able to return to. I hate being on my own each day

The problems of wanting to talk about one's health experiences to other clinicians.

I discovered last night that my abstract for a one-hour lecture at a conference had been recommended for a poster presentation by the two reviewers in the blind peer review process. In hindsight, I thought that my abstract might have been a bit too tongue-in-cheek and hadn't explained the aims of the presentation in enough detail, and that this explained the recommendation that it be accepted as a poster. I drafted an email to the chair of the scientific committee, asking them to reconsider, and offering to rewrite the abstract. I haven't sent it yet, and am not sure that I will.

Then I checked, and this was the title and  abstract that I submitted:

Improving patient-centred care: lessons from the real world

Abstract

Patient-centered care leads to a higher sense of patient engagement,
which can improve perceived health outcomes. This presentation reports
on the results of an unplanned experiential single-case study
involving a neuropsychologist who underwent multiple surgical and
medical procedures and admissions over an 18-month period.  The
qualitative data collected illustrates some of the known issues in
clinical judgement and decision-making such as confirmatory bias,
pattern recognition, and rapid diagnostic foreclosure (jumping to
conclusions). Retrospective analysis reveals how routine clinical
practices might result in a perception of impersonal, rather than
patient-centred, care. The presentation considers ways for clinicians
to avoid common pitfalls in decision-making processes, and discusses
how to achieve better patient-centred care in clinical practice.

It was a little tongue-in cheek, but it explained what I meant to talk about, and while confessing to an unplanned, informal, retrospective analysis of qualitative data collected from a single-case study may have made my abstract seem of less scientific merit than that from all the other more conventional hypothesis-driven, planned, quantitative research involving groups of clinical samples and controls, I had hoped that the reviewers might see some merit in engaging in discussions about clinical practice, and that they would appreciate the difficulties of presenting and sharing such information in a poster format.

I expressed my distress on Facebook last night (I wrote that I felt shattered by the rejection - not a cool, or professional confession to make).  I don't want to write to the scientific chair of the conference because we'd previously discussed my ideas by email and I thought they were receptive. My Facebook buddies thought the presentation sounded invaluable. While a conference presentation would be more cost- and time-efficient for me, I might offer to give it as a professional development activity to small and receptive audiences around Australia. That would give me a chance to interact more closely with the audience, as well as giving me a reason to travel interstate. However, I don't fancy the prospect of offering my presentation and being rejected again. I've already suggested it to my state colleagues about a month ago and received no response in return. It's safer to share it my thoughts on my blog.  

Yes, it's good that the abstract wasn't rejected outright, but I think it would be difficult to give the presentation in less than an hour, and almost impossible to present what I wanted to talk about as a poster. Posters are more suited to data that can be presented through the use of figures and tables, and succinct text summaries of introduction, aims, method, results, and conclusions. My presentation isn't suited to this format, it's intended to share the insights and experiences I've gained as a conversation with my colleagues. I can easily talk for two or three hours about what I've learned, it would be hard to condense it into 30 minutes. If I had to, the best way to summarise it in a poster would be through the use of headings and graphics.

1. The Fantasy: Idealised image of the patient at the centre of clinical care. 
2. Reality for common conditions: patients as anonymous boxes on an assembly line. 
3. Reality for patients with highly aggressive and incurable conditions: patients in open coffins on assembly line, with surprised doctor asking "so you're still alive then?" 
4. Reality for clinicians who want to share their personal insights into the healthcare system with their peers: people in an auditorium, or a room full of people looking uncomfortable, with their backs turned on the speaker, with only a few facing the speaker with interest.

I hate to say it, but the root cause of this sense of disappointment that clutches my guts is the fact that I've recently been described as a "long-term survivor of GBM" 10 months after my surgery. Ten months doesn't seem very long to me, protected in my hopeful bubble of optimism that I will survive for decades. Normally, one could resubmit a paper for future conferences, but  being objectified as a a "long-term survivor" makes me realise that I don't know if I'll still be around next year, or if I'll be able to consider any form of presentation at that time. Of course I want to be here, and I hope to be even stronger and more capable than I am at the moment, but this whole thing makes me confront the reality that my future is uncertain, and that while I can plan for future events, like any normal person, my brain tumours mean there's a greater possibility that my future will be prematurely truncated. Which makes me all the more eager to share my knowledge and insights while I can.

So rather than attending a conference and presenting a cartoon-style poster that is more punchy than a one-hour oral presentation, I'll continue to write this blog, and consider offering my presentation to small groups who are interested in learning from my experiences. I'd like to go to the conference to catch up with old friends and colleagues, but I don't have any need for the PD points because I am on a non-practicising registration. 

The discomfort of clinicians in hearing first-person accounts of experiences in the healthcare system is a major symptom of the discrepancy between ideals and reality of patient-centred care. Clinicians are taught to maintain an objective distance between themselves and their patients, it's vital for emotional survival and self-care when confronted with illnesses and distress, and for establishing and maintaining professional boundaries in our relationships with clients. Clinicians may believe that they're engaging in patient-centred care even if they don't seek or obtain feedback on their practices from patients. My experiences have taught me that what I thought was client-centred care was probably a poor approximation. Clinicians' training doesn't teach us how to deal with patients who step out of their boxes and express their thoughts, perceptions, and desires without invitation. We listen with surprise or astonishment, try to deal with their statements, and then close the files as quickly as possible, glad that most patients don't attempt to violate the rigidly constrained roles that we give them. Clinicians who step out of the boxes assigned to them as patients are violating two of the boundaries that have been developed to help clinicians maintain their sense of dispassionate objectivity.  It's probably very confronting for clinicians to be exposed to fellow clinicians who want to share their first-hand experiences of being patients, or even to feel comfortable around those who have visible signs of illness or disability. It's as if we hope that being a clinician will somehow make us immune from disease or impairment, which we can only deal with comfortably in the clearly defined roles and scripts of the professional setting. To be confronted by a professional colleague who wants to talk to their peers about their personal experiences does not compute in the highly depersonalised, objectified world that we expect patients to inhabit. It's a boundary violation on two fronts.

It's sad and ironic that clinicians all have family and friends who have suffered ill health, and we can talk comfortably to them in private,  but we don't know how to deal with a colleague outing themselves as having suffered illness in a professional situation. I'm not just talking about myself here. I've seen it in other settings We're even uncomfortable with having "consumers" attending professional meetings. Where consumers are invited to mental health meetings, they are often given a chaperone to ensure that they stay on topic and don't derail the agenda. High-functioning consumers with dementia who attend dementia conferences cause a flurry of silent diagnosis-checking amongst the clinicians, who can't help but compare the presentation with the patient's self-reported diagnosis. I know, I've been guilty of it myself.

Self-disclosures from fellow clinicians are uncommon, unexpected and probably violate unspoken social norms and mores. For such a colleague to want talk about what they've learned about their own clinical practice from their personal experiences might be doubly confronting, and challenges the very foundations of professional behaviours that allow us to maintain a protective sense of distance between ourselves and our patients, the distance that we think is necessary to maintain our professional objectivity. It's unfortunate that such self-disclosure creates cognitive dissonance between how to perceive the clinician/patient. They are still a clinician, but they're voluntarily disclosing their health issues to other clinicians, without the required referral letter. It's like the person asking for a professional opinion at a cocktail party - we try to be polite and informative in a general sense. We don't have a defined professional relationship with that person, so any advice we give has to be given cautiously and with a disclaimer that they should talk to their doctor about it. Or maybe I'm overgeneralising here, and assuming discomfort? My allied health colleagues have seemed fascinated and receptive to hearing my story and the insights it has provided me when I've spoken to them. I don't know what the reviewers were thinking in evaluating my abstract.

  

How would we deal with patients who walked in off the street and wanted to talk about their experiences, who are offering to help us, rather than requesting our assistance? We have no model or training for dealing with such a situation. It would be even more confronting if the patient was a colleague who wanted to share the insights they've gained with us. It reverses the roles in the standard clinical interaction, and any previous professional relationship that may have existed. The clinician is being offered the chance to reflect on their own practice and to develop insight into what they do and how it affects patients and carers through hearing about the insights of another practitioner, who they may have previously known and respected. This challenges the nature of the former peer relationship. I'm not a clinical psychologist, partly because I could see that not many people would voluntarily seek to develop insight into themselves unless they were suffering considerable distress or anxiety from life events, or disabling mental health problems, and that the work of a clinical psychologist would therefore be time-consuming and difficult. (many people in my philosophy class had problems with Plato's proposal "that the unexamined life is not worth living.")

Neuropsychology appealed to me because it was based on brain structure and functioning that can be measured and understood with scientifically validated and reliable assessment tools. I wanted to help people afflicted by stroke, dementia, head injury, or other neurological conditions to understand the nature of their conditions and the extent of their difficulties, and to help them cope with their changed circumstances through education, individualised recommendations, and support. Neuropsychology doesn't usually focus on or involve much of the messy business of acknowledging and dealing with psychological defences and dysfunctional coping styles, although much of our work involves identifying mood and anxiety issues that the patient may now be aware of. The interventions we use are largely based on the person's cognitive and behavioural strengths and weaknesses, and the majority of Australian neuropsychologists refer to clinical psychologists for assistance with complex psychological issues, though some of my colleagues are also involved in other forms of psychological interventions.  In neuropsychology, there are differing degrees of certainty about  the presence and degree of cognitive  or behavioural impairment or change,  and the patients and their carers want understanding and answers. Fairly objective, achievable, and straightforward for the neuropsychologist, who doesn't generally have to worry too much about engaging the patient in self-reflection, development of insight, or recognition of defence mechanisms or maladaptive behaviour patterns that have developed over a lifetime. I guess it's shouldn't be disappointing to me that a neuropsychology conference doesn't know what to do with a presentation like mine that proposes we examine how patient-based care seems to a clinician going through the health system. (Oh no, she might talk about what it's like to recover from brain surgery! How can we ever look at her the same way again if we know what it was like for her  to be disoriented, confused, forgetful, and irritable? Too much information, cannot compute. Delete, delete!) Or, perhaps I'm over-thinking this, I cannot know what the reviewers were thinking.

A dear friend who is married to a general practitioner told me that the best part of medical conferences is often where a doctor gets up and talks about their experiences of being a patient in the healthcare system. My friend said such presentations are often uncomfortable and confronting for the audience, but that they can also be the best events in the conference, and evoke valuable self-reflection and evaluation amongst the audience. It seems that this kind of presentation is uncommon at neuropsychology conferences, where we are still more accustomed to scientific papers, literature reviews, and workshops designed to update skills and knowledge.

Maybe I was corrupted back in Philosophy 1A, when we studied Plato and debated his proposal that "the unexamined life is not worth living." I've been comfortable with a certain level of self-reflection since then, but never had the courage to see a therapist to take it to a higher level when things weren't working out well, and I've never offered to share my self-reflections with my peers before (other than sharing my 'musings of a neuropsychologist with too much time on their hands' via email list and on my neuropsychbookworm blog earlier this year). When I was a lecturer, I used to reflect on my own clinical practice quite regularly in my presentations, and feedback from the students suggested that it  gave them useful insights into clinical practice, and was a valuable modelling of self-reflection. 

At least blogging allows me an unhindered forum for altruistic self-disclosure. I believe I have much to share that will be of value to other health professionals, and I want to share it for the benefit of everyone. Attempting to do it probably makes me more uncomfortable than it would make an audience, as it involves risking to my professional reputation in deviating from the clearly prescribed path of scientific objectivity, and it also involves risking feelings of rejection, even though I know that rejection of my proposal isn't a rejection of me as a person. So I'm so grateful for blogging. It allows me to share my thoughts without the need for blind peer review, and to reach an audience who are interested and open to being exposed to ideas that may cause discomfort. I've put myself out in the open. I'd appreciate any constructive comments or feedback via email at fiona dot bardenhagen at gmail dot com  - I won't necessarily be able to respond to every email, but each one will be appreciated.

activity scheduling and the importance of mobility, occupation and social engagement

I've been feeling progressively better over the last couple of weeks. The improving weather helps enormously. Compared to last week, when there were gale-force winds and cold nights, this week has felt like spring time - cool mornings, but lovely sunny days, and the sweet smell of daphne in the air. I did some very therapeutic pruning of the lavender and old hydrangeas on Tuesday, and walked at least half an hour every day from Sunday.

I've made a deliberate attempt to go for a walk each day, after realising that snuggling in bed when it's cold outside and you have no plans for the day could be a quick route to despondency. Appointments with the Outpatient Rehab dietitian and occupational therapist have inspired me to use my paper diary as a record of regular activities, including fluid intake, meals and snacks, exercise, rest, energy levels, mood, social activities (face to face or telephone), and bowel motions (don't want to get constipated ever again). It isn't something I've ever mapped out so explicitly for myself, but it's important at the moment, when my days are so unstructured and socially isolated. I have friends and friends acquaintances in Launceston, but I need to initiate contact with them as they all work and have busy lives. The benefits of having mobility, regular work and contact with people through that work has become increasingly apparent to me since September last year. Being unable to drive since then has removed my ability to have unplanned social interactions at school drop off and pickup, or through visiting the hospital and catching up with old workmates (though Ben doesn't like me going near the hospital because of the risk of infection - an irritating situation that causes friction between us. I know he thinks he's being careful and protective, but it feels controlling and restrictive to me. Besides, my neutrophils are staying around the 1.7 mark, which is high enough to not take the gcsf injections for the last two weeks)

It looks like I won't be able to return to driving until early next year. The OT who I saw yesterday also does the return to driving assessments, and she thinks the regulations have changed to require drivers to be seizure-free for one year before resuming driving. I don't want to spend $350 on the driving assessment (involving driving simulation plus on-road testing in a dual control car) until my vision has recovered further and until I'm likely to pass. I want to do it when I'm most likely to pass. It would be demoralising to sit it and fail. The OT agreed it's best to wait until I'm most likely to pass it.