Recovering from the laparotomy

Symptoms recurred Thursday morning. Surgeons discussed me at their weekly meeting. Agreed on a laparotomy. Came into st vs private on Thursday afternoon for surgery on Friday.

Friday evening (Facebook status update, was rather challenging to write, could barely read what I was writing)

BAck in room. Sipping water. Tummy very ÿ sore. Feeling dopey, very sore. BP fine.-temp 36.1. Long abdo incision to add to my scars. Hard to talk from dey mouth., good nghts and lovie to all. Appendix gibrc (I may have meant gone, but I don't remember being told that ???!)

Saturday morning fb status update

Oh sweet Jeebers! I fee like my tummy has been skewered. Can hardly move from side to side, the PCA pump is locked for 5- minute doses so I don't overdose, the pressure pump stockings on my calves are good, it hurts my wound to move my legs. Glad I've got a Cather in, getting out of bed would be agony. So glad the kids can't see me like this. I'm going to switch off and spend time with calm thought and happy memories 

Saturday afternoon

My surgeon said that my bowel was twisted on itself at the level of the caecum ( on the right hand side, just where the large bowel begins). This is why food and fluid couldn't get through, and why I was vomiting whenever I drank more than a small amout of water. He described it as having a twisted shirt sleeve- you can't push your arm through. So he untwisted it, and put in some stitches to help anchor it in place. He's removed my appendix because he saidvit would be impossible to access from behind the tethered caecum  if something went wrong with it in the future.

He said  I need to lie still for a day or so while my wounds heal, and only take thin fluids until gas starts moving. I need to lean to my right side when lying down so that gravity takes my bowel in the correct direction, rather than letting it twist on itself again by leaning on my left side (which I'd been doing to protect the infusaport on the right). There was no infection, inflammation, cancer, or necrosis, and he didn't have to remove any of the bowel itself. I have a 10-20 cm vertical scar starting just above the belly button, and now that I'm watching the clock, the PCA is starting to be effective (PCA = patient-controlled analgesia). They've still go me on IV fluids, and IV Panadol has helped too. I will be in here for three or four days, taking it quietly. Not really feeling up for visitors at present, though it was good to see the boys today, they came and held my hands, then sat quietly reading their books.

I am going to be a model of good health from now on.

Time for a sleep.

Sending love and best wishes to all of you. Enjoy the health and independence that we tend to take for granted

Love
Fiona

what patients want: a personal perspective from being a patient for 14 months and and reflections on 24 years as a neuropsychologist In Australia

This last week in hospital, the third week-long admission following a bowel obstruction with nausea and vomiting, has given me another perspective on what patients want from their healthcare experience, particularly in terms of timeliness and time spent by clinicians.

From my experience as a patient over the past 16 months, I've been willing to wait, patiently, to see various professionals and to have tests done, trusting that this is necessary to diagnose and better treat my condition.

I have appreciated the students, nurses, and doctors who have taken the time to take a thorough history from me and to answer my questions and concerns about the relative benefits of colonoscopy, gastroscopy, and laparoscopy in the last four weeks.

I have appreciated their candidness in discussing the pros and cons of various scans and procedures.

I have been willing to submit to invasive procedures that have been necessary in the diagnostic process, and I am glad we decided on not pursuing a laparoscopy when none of the surgeons could see how it would be helpful, even though the cause of my symptoms was still unknown. When they recurred, I had a laparotomy to correct the twisted bowel which was only apparent on the first X-ray in early May. 

I understand that the doctors and nurses did not want to put me through unnecessary suffering or procedures. The care and compassion shown by the clinicians makes unpleasant, invasive procedures, and the waiting times, bearable.

I was fasted from Tuesday to Friday for two consecutive weeks waiting for procedures, first a gastroscopy, then an endoscopy.  The nausea and IV fluids overrode any hunger, I was just grateful that I was being cared for. I wanted answers, and was willing to deal with the waiting and uncertainty in order to get them. Pain relief also helped. Developing a topical allergic reaction to morphine was annoying as it took away a quick and effective form of pain relief. And the pain was bad, worse than being in labor.

My recent experience has made me reevaluate a recurrent topic of debate in Australian neuropsychology. I started my training at Melbourne Uni in 1990, and  the duration of neuropsychological assessments has been a persisting area of discussion and disagreement within the field since then, with many clinicians worried that "long" assessments may cause patients fatigue, frustration, or distress, and some arguing that long and comprehensive assessments were a waste of time for both patients and clinicians. This seemed to be based on the belief that an experienced and competent clinician should know exactly what tests to give each patient, so that the assessment is over in the least possible time. It was argued that assessments should be done as quickly as possible to avoid subjecting patients to the "adverse experience" of testing, and to improve our clinical efficiency so we can see more patients in less time. My preference for comprehensive diagnostic assessments has been called obsessional, rigid, anal-retentive, cruel, inhumane, overly anxious, excessive or a sign of questionable competence. And that's what people have said to my face.

As a patient of 14 months' experience, involving more than 15 admissions and over 150 days in hospital, I can tell you that having a neuropsychological assessment under the care of a compassionate and flexible neuropsychologist would only be perceived as an invasive or adverse experience by the rarest of patients. No blood is collected. No veins are punctured, often repeatedly, in various places, in attempts to take blood or insert cannulas. No disgusting contrast liquid needs to be ingested. There is no risk of life-threatening complications from the assessment. It doesn't cause physical pain. Neuropsychological assessments do not cause nausea, vomiting, or diarrhoea, or fear of dying during surgery. There is always the chance to take a break between items or subtests if fatigue, distractibility, or distress is an issue. There is always the chance to talk about a test if it triggers a strong emotional response, but I've rarely seen that happen, except in patients with a past history of learning difficulties who hated maths at school, or in an anxious patient whose anxiety was heightened by an anxious student who kept apologising for the assessment. Strangely, the most painful procedures I've experienced have been at the hands of anxious or apologetic nurses or medical students. It's better if they just get on with it. 

I suspect that neuropsychologists have been over-sensitised to the risks of causing distress or harm to patients through our research ethics applications that always ask if the research could be distressing to the patient, and in a desire to avoid the bad old days of bilateral ECTs, frontal lobotomies, and the 'deep sleep therapy' investigated by the Chelmsford Royal Commission. We've never been involved in those kinds of procedures, and our tests are standardised on healthy controls, where the Wechsler Memory and Intelligence scales are given on a single day for co-norming purposes. This proves that healthy adults can complete the tests in a single day without adverse effects, apart from the fatigue which often surprises people when the testing is over. Patients often seem to find it an interesting and enjoyable experience, albeit challenging and confronting at times.

The Wechsler Intelligence and Memory scales, since the publication of the WMS-R, were meant to be given together, and this is done routinely in the US, where a full battery of neuropsychological tests can take from 8-10 hours, often administered by a trained psychometrician. I can't recall seeing any concern about this assessment time in my years lurking on North American neuropsychology lists. 

Our recent CCN survey of Australian neuropsychologists found a mean assessment time of about 5 to 7 hours, with mean durations of "short," "medium", and "long" assessments varying from 1 to 20 hours, and the categorisation of assessments into short, medium, and long, varied according to the average assessment time of each responding clinician.

In the 20 years that I have been giving neuropsychological assessments, firstly on clinical placement, then for my PhD research, and then in mental health, neuroscience, general medicine, and rehabilitation settings, I can only recall a handful of patients who did not tolerate a comprehensive assessment with the Wechlser memory and intelligence scales and a number of additional tests of verbal fluency, confrontational naming, mood, anxiety, and premorbid abilities.  The ones that I remember best were the young lady with borderline personality disorder who nearly pushed me over when I asked her to accompany me to the office for an assessment, and the agitated young man who hated maths, storming out of the office when I asked him the first arithmetic question. 

Most of the 2000 patients seen directly by me, my students, and colleagues at St Vincent's from 1994-2009 were appreciative of the time we spent with them in interview, assessment, and feedback, and if any became fatigued or distressed, we gave them the opportunity to take a break, or to complete the assessment another time. Some accepted, but others preferred to complete the testing that day, as they'd often already waited for months to see us. In fact, we probably found the assessments more tiring than the clients, due to the need to maintain our concentration and adherence to standardised administration while recording observational data and attending to the client's needs.

With all due respect to my colleagues who are concerned that lengthy assessments might subjects our clients to distressing experiences, I think we need to compare what we do to other more common health procedures. 

A dental exam, scale and clean is uncomfortable and sometimes painful. A Pap smear or rectal exam is undignified and not the kind of thing we discuss in polite company.   Having bloods collected or cannulas inserted is painful, and can provoke more anxiety the more often you have them, especially if your veins are scarred from being accessed multiple times, or when they start collapsing. 

Granted, all these procedures take less time than a neuropsychological assessment, but competent neuropsychological assessment is not invasive, painful, or undignified. With the exception of a few timed tests and tests of memory, it's always possible to stop midway through an individual subtest. If any of our tests caused significant distress or lasting damage, they would not be published. 

Interestingly, a classmate of mine was asked to review a patient who had been assessed the year before by another student on placement. On seeing the Austin Maze being pulled from the box, the patient burst into tears, and begged my friend not to give it to her. Review of the previous assessment showed that the patient had been made to do the maze dozens and dozens of times in pursuit of the learning criterion of two error-free trials. The finding of a highly significant correlation between the total errors on the first ten trials of the test and the number of trials to learning criterion by Bowden et al in the early 1990s obviated the need to push patients to the learning criterion on the Maze,  but this development hadn't translated into clinical practice, where the ability to achieve error-free trials was seen as evidence of ability to inhibit perserverative errors. The development of the WMS-3 &4 made it redundant as a test of visuospatial memory. 

I suspect that patients are willing to submit to invasive, undignified, or painful procedures because they trust the clinician will not subject them to unnecessary tests and, crucially, will not omit necessary ones either. Omitting necessary tests in the interests of time makes a mockery of the time the patient has spent waiting to see the clinician to obtain answers to their questions and solutions to their problems.

We seem to forget that the word patient has two meanings - one is a noun used synonymously with client. The other is an adjective which describes how a client is willing to behave on the assumption that their interests are being looked after, and that they will receive the answers they desire from the clinicians they go to see. After waiting to see a clinician, clients want the clinician to reward their patience with an assessment that gets to the bottom of the condition affecting their health, and they don't want clinicians to do an incomplete assessment which wastes the time spent waiting in hope of answers. They want us to get it right the first time, even if it takes a number of hours or sessions to do it. They trust us to get it right, and not waste our time on tests that are outdated or insensitive, and therefore more likely to get it wrong.

We've probably all had the experience of knowing that something is wrong with our car, and taking it to the mechanic who checks it over, changes the oil, and says everything is okay, only to drive it home and have it break down on the way, or within the next week. This experience seems to make many people furious. They take it to a different mechanic who runs more sophisticated or thorough diagnostic tests, and discovers that the clutch plates are worn out, the engine is dropping two cylinders, or that the battery is almost dead. Things that should have been discovered if a thorough assessment had been done in the first place. The motorist is understandably angry at the inconvenience, the wasted time and money, and vows to never return to the first mechanic again.

Clients are like car-owners - they are willing to invest time and effort into diagnostic testing when there is a problem, on the implicit understanding that the diagnostician will do everything necessary to get it right the first time. They understand that sometimes things can be missed in even a thorough assessment, and are forgiving of that. It sometimes takes a while for symptoms to develop to the point that the diagnosis becomes apparent. But motorists are less forgiving if a mechanic cuts corners and doesn't fully assess for the underlying causes of the presenting problem, perhaps because of internal or organisational pressures to constrain costs, perhaps because of a lackadaisical attitude, perhaps because of a well-intentioned concern about not charging for unnecessary tests. The motorist sees this as a waste of their time and money. They paid the mechanic to get it right the first time. We clinicians owe our clients the same. They have patiently waited to see us, they are willing to submit to our tests, trusting that we know and use the best tests available. Compared to the painful and invasive procedures that they have experienced as a result of their illness or injury, Spending 5 or more hours sitting with a friendly, compassionate and caring psychologist who provides cups of tea , regular breaks, and is willing to listen to their experiences as a patient is seen as a welcome change. 

Spending time with a neuropsychologist would be like going to a day spa when compared with the often abrupt and starkly clinical efficiency of other medical procedures, where patients and families can feel swept up on an impersonal conveyor belt. 

Unlike motorists, patients are in a very vulnerable position, and often don't feel empowered to ask questions or give feedback to clinicians. If we don't ask for their feedback, how can we improve? One way to get honest and unbiased feedback is to provide a standard feedback form and reply-paid envelope for patients and family to complete anonymously after the assessment is over.

So how can we improve what we do for our patient clients? Firstly, we can ask them what they most want to learn or gain from their interaction with us, so that we can assess their needs and desires, and sometimes  quickly give them what they want without embarking on a full assessment. When I asked to see the dietician prior to my discharge from hospital last week, all I wanted was some advice on how to reintroduce food to an irritated stomach that had been fasted for nearly two weeks. (I wasn't sure what to eat, I was hungry, yet afraid to eat anything lest it cause more pain). She sat down on my bed, and before I could tell her what I wanted, she said that she didn't have time to see me, but would arrange an outpatient appointment for me in a couple of weeks time. Then she was gone. My nurse rang the dietetics department and told the receptionist what I had wanted to know, the receptionist asked the dieticians, and advised the nurse to look up low-fibre diets. If the dietician had simply let me speak, she could have told me the same thing in less than a minute. While I understand the pressure on their time with multiple referrals from around the hospital, it was clinically inefficient to come and tell me she couldn't see me without first clarifying the reason for the referral. She could have answered it in a minute, and saved wasting their receptionists time to put me down for an outpatient  appointment. It turns out that the written referral was completely wrong, and said I'd wanted advice on managing constipation!!!

How else can neuropsychologists improve what they do?

• Respond to new referrals as soon as possible for both inpatients and outpatients. Get a brief idea of what the patient wants to learn, don't assume the referral question is correct, and do a brief screen for untreated mood or anxiety issues that may add unnecessary caveats to interpretation of your assessment. Unless there is an urgent clinical need, do not assess a clinically depressed or anxious person who has not had treatment. Explain the reason for this to the referrer.
• Educate the patient about what to expect from the assessment by attaching a brochure about neuropsychologial assessment to your appointment letter.
• Be brave and evaluate what we do at present, and see if it is necessary for each patient. If a patient and their family have a clear and stable diagnosis with no questions about ability to return to work or study, or concerns about symptom progression,  perhaps they just need education on their condition, rather than automatically progressing to a full assessment. 
• If they have a condition that may change over time, they need a baseline assessment that will provide a good point of comparison improvement or deterioration in future functioning. Such an assessment would use measures with high test-retest stability, which is best obtained by using the composite scores provided by the Weschler Memory and Intelligence Scale Index scores. Individual subtests of the Wechsler Scales rarely have the same stability over time in healthy people as the index scores do, meaning that it's harder to detect true change on subtest scores alone. So if you're seeing someone with an acquired brain injury who may want to return to study or work, or someone with a progressive neurological disorder who may lose the capacity to function independently, it is going to be more helpful for them if you assess them with the full Wecshler scales so that you can determine the degree of change over time, presuming they aren't so severely impaired at baseline that formal assessment is impossible. 
• Unless you try to formally assess someone, you can't presume that they are too impaired to be assessed. I have seen patients who were severely impaired on baseline testing, who improved over time. Even people with significant sensory, motor, or expressive problems, including blindness and deafness, can get subtest and index scores ranging from extremely low to superior. If we don't assess, we will never know.
• Of course, if someone is severely ill, in considerable pain, confused, or still in the recovery phase of an acquired brain injury, the test results will not be as valid or reliable as when they are clinically stable. It's okay to delay an assessment until the patient is well enough to do it to the best of their abilities.
• We can stop being embarrassed and apologising for what we do. We have the best tests available to test cognition, memory, mood, and behaviour, and we are the experts in understanding the impact of brain disorders on the whole person. People come to us for answers and assistance, we need to acknowledge where we can and cannot help.
• We need to regularly evaluate the tests that we use according to our ethics code and code of conduct, and to ensure that every test we use is measuring what it is supposed be measuring. We need to be experts in the clinical applications and importance of reliability, validity, sensitivity, and specificity. Practically speaking, it's like checking that your grandmother's kitchen scales are as accurate as a modern digital scale, and keeping it for decoration purposes only if it is not. Or if her scales are accurate, but scaled in outmoded imperial measures, then printing out a conversion chart from imperial to metric so that you don't miscalculate the amount of sugar you use in your macaroons. In baking, accurate measurements are vitally important, as they are in science and neuropsychology. 
• Give up on tests that you feel you can interpret accurately based solely on years of experience and your clinical intuition. This approach can result in widely divergent impressions both between and within clinicians. It's a little like rapidly measuring a pinch of salt with your hands vs standard measures, or guestimating one cup of flour. Too much salt will ruin your macaroons. Too much flour will make your sponge cake dry. How can we bake to consistent results without consistent recipes and standardised measures? Our assessments require precise measures, just like baking sponges or macaroons. They're not casseroles and curries that can be seasoned to taste and adapted to available ingredients.
• We should consign unreliable, invalid, old and outdated tests to the bookcase rather than continue to use tests that provide results with a standard error of measurement big enough to drive a truck through. Anything with a reliability of less than 0.7 is considered unacceptable. From memory, this means that we should dispense with Trails A& B, the RAVLT, the L'hermitte Board, Colour form sort, and the Wisconsin Card Sorting test. We have better tests for psychomotor speed, verbal and visual memory, and fluid intelligence. Surely it's worse to make a patient spend time on completing inaccurate and uninterpretable tests than to make them spend a few hours on a battery of highly reliable and well-standardised ones that were designed to be used together?
• Purchase and use tests like the BRIEF or BRIEF-A, or the FRSBe to get patient and informant reports of a range of frontal-system behaviours that can be compared to age and gender-matched norms. These inventories reveal if their are problems with impulsivity, dysinhibition, inappropriate behaviour, planning, organisation, if there has been a change from premorbid levels, they are much more revealing than relying on the WCST and Trails to measure frontal function;  they save time on the clinical interview, and can help reveal lack of insight, over-reporting, protectiveness, or underreporting in patients and informants.
• Be honest in obtaining and reporting test results. If the patient comes to you in so much fatigue, depression, anxiety or pain that you think it will invalidate the test results, do not proceed with the assessment. Reschedule it for when they feel better, or see if pain relief or a warm drink can alleviate their discomfort and start the testing a little later. If the testing is affected by the development of fatigue, reductions in concentration, or increased anxiety, discontinue the assessment so you can get the patient's best performance at another time, and note the details on the record forms and in the report.
• If a comprehensive assessment is not obtainable, detail the reasons in the report, and any caveats that may place on the interpretation.
• Don't be embarrassed or apologetic if you're not sure of what to make of the assessment results. Describe what you found, and list the possible interpretations. Human problems are highly variable and and complicated, and it's not always possible to be sure of the answers. Better to acknowledge this rather than to put on a cloak of false confidence in your conclusions. Better to lay your decision-making cards on the table - "it could be one of these things, but I'm not sure. It seems more likely to be a, b or c, and less likely to be z. On an outside chance, it could be xyz". Don't assume primary responsibility for arriving at a diagnosis - your effort is just a part of a multidisciplinary assessment. As important as it is, it's just one cog in the wheel. By putting your differentials in the report, it allows others to consider your hypotheses and may help clarify their own. 
• Remember your first duty of care is to the patient. Ask what they want to learn or achieve from seeing you, and try to give that to them if it is possible, or reformulate their questions and desires into a form that is possible for you to address.
• Don't let bureaucrats dictate how long your assessment should take based on the "time is money" premise, which is offensive and demeaning to patients, and disrespectful of clinicians who are the experts in their field. Each patient will need a different amount of time to be assessed. Some will skim through everything in the minimal time, others will take longer, due to a multitude of factors including personality, impulsivity, fatigue, concentration, motivation, or other things. Each patient deserves to get the best assessment for their individual circumstances, even if it takes a little more time. We wouldn't accept half a brain scan because it was taking too long, would we? If the patient was allergic to the contrast medium, then we might not get an MRI with contrast, but the reason would be documented and  the absence of the data taken into account when interpreting the non-contrast scans.
• Remember to give and elicit feedback on the assessment process once it's over, and keep records of the feedback you receive, so that you can continually improve on the service that you provide.
• Make time to meet with the primary carer individually. They often find it hard to express their needs and concerns in front of the patient, and often don't know what to ask for in terms of education and supports
• Refer on to a multidisciplinary allied health team if the patient isn't already linked to one, so that the patient can benefit from the range of professional services that are available.

An anonymous person commented on the feedback to the 2012 CCN conference that I was pushing an agenda  of "testing until the cows come home." This was in response to my comments on a student case presentation where I expressed concern about the apparently common practice of omitting core subtests of the WMS-IV and to assume that only giving logical memory or verbal paired associates provides a reliable measure of verbal memory. I felt bad about getting sidetracked on that issue in that session, and immediately apologised to the presenting student, and to the two students who subsequently had less time to present their cases, after the session was over. I think we parted on good terms, and I would like to apologise to anyone present who was offended by my passion for high-quality data. 

For the information of the one or two people who said on the survey that the early scheduling of the session was disrespectful to the students, the previous student case conference in Melbourne in 2009 received feedback that students did not attend to support their peers because they did not want to miss the parallel sessions, and that they did not want it to be a stand-alone session during the day because that would have made them feel too exposed. In response to that feedback, the 2012 conference committee decided to schedule the student cases as an early stand-alone session. We tried to get it right, but we couldn't satisfy everyone.

In terms of testing, despite my preference for comprehensive assessments using the best tests available, I don't believe in over-assessing anyone, just in doing the best assessment possible for the individual. I'm not completely rigid in my approach, which has developed on neuropsychological measurement research from the past 30 years. I am concerned about arriving at a false positive or negative diagnosis, and am not motivated by a desire to complete an assessment with the least tests possible in the shortest available time, or by the misguided assumption that more testing is better - we have to recognise the overlap and associated redundancy of some of our measures.

What I have written above basically summarises my approach to neuropsychological assessment, developed over 24 years of reading scholarly articles, research, practice, case-conferences, and supervision. It's an approach based on doing the best assessment possible, using the best tests, for each patient, and not taking short-cuts unless it is clinically necessary. I don't see it as "testing until the cows come home," and my patients and students haven't seen it that way either, though I can understand that it is a different approach to that described in Kevin Walsh's books of the late 1980s. 

My patients and their families have appreciated the time I've taken with them, and the students I've supervised have said that taking a routine and standardised approach to assessments with each patient allows them to get a better idea of the variability of test performances between and within patients, and to spend their time concentrating on the patient and the qualitative aspects of performance, rather than worrying about missing out on crucial tests.

The student comments were reassuring for me, because I trained at a time when every supervisor had a different set of favourite adult tests which wasn't necessarily made explicit (we were told to choose them ourselves, and that we'd learn "through experience"). On placement, in trying to assess what I thought was important (and also take a history) in less than two hours, I was often embarrassed to find I'd omitted at least one test that my supervisor thought were vital, like digit span, digit symbol, arithmetic, vocabulary, similarities, comprehension, or information. On the one hand, I was admonished for leaving "vital" tests out, on the other I was admonished for wanting to do a thorough, standardised assessment rather than a brief screen based on a hypothesis-testing approach. The former  was seen as a waste of time, even though it affected my confidence in my interpretation of the test results.Then I went to the RCH where my supervisors encouraged me to do comprehensive assessments, both for the benefit of the children and their families, and as a learning experience for me as a student. I learnt that the WISC-R and other intelligence scales available at the time gave similar results from slightly different perspectives, and that it was probably over servicing to do two or three different cognitive batteries with the one child (like the WISC-R, K-ABC and Stanford-Binet), no matter how sweet and compliant she was. Sometimes our tests don't give us definitive answers on subtle problems.

I decided that adults deserved the same degree of thorough assessment given to children, particularly with work, study, and independence to consider, and that it was more consistent to administer the tests of the Wecshler scales in the standardised order and procedure than to pick and choose based on clinical intuition, or to invalidate the norms by "testing the limits" or otherwise violating standardised procedures on an ad-hoc basis for each patient.

Embracing the well-normed, stable, and reliable WMS-R, WMS-III and WMS-IV indices saved me wasting patients' time on the poorly normed, less reliable and less stable tests like the WMS, RAVLT, or the norm-free L'hermitte board and colour-form sorting test. And better still, by using the WAIS-R and WMS-R in combination, there were tables to look up to see if memory was in the range expected from intellectual functioning, rather than the guesses and clinical intuition available to users of the WMS. This has only improved more with the co-normed third and fourth editions of the Wechsler scaless, and the conforming with the WTAR.

Using this approach, I could settle into a well-rehearsed process of assessment that is more time-efficient and standardised than wondering which test to give next. It allows the clinician to act like a well-oiled conduit for the tests on one level, while being simultaneously aware of the patient's mood, concentration, and other qualitative features on the other.  I couldn't justify sacrificing robust tests for flimsy ones. Which is why I prefer composite scores to subtest scores. The principle of aggregation shows that the reliability and stability of composite or index scores is greater than that of the individual subtests that contribute to the index. 

I have no idea who called my approach "testing until the cows come home," I find it personally amusing, but rather offensive to our patients. Since I've been likened to a dairy farmer, I'm proud to say that I'm  willing to take the time to bring all the cows home by dusk, rather than rushing it and leaving old Daisy, or the calves, out in the river paddock on a stormy night because I'd rather be inside, dry and warm by the fire. It is the farmer's responsibility to be patient and to make sure each and every one is home safely. It is the clinician's responsibility to err use their duty of care to their patients. We may all choose to do it in different ways, but we all need to sleep comfortably at night, knowing we are practicing ethically, and within accepted guidelines for our field. 

In the early days, I may have been a little over- inclusive in applying the same approach to every patient, especially when they needed education and information, rather than a diagnostic assessment. But  I learnt that being clear on the objective of the assessment and the patient's needs allowed me to refine and tailor a consistent but individualised and responsive approach to each person. I feel more comfortable with that than trusting that a brief assessment will tell me everything I need to know to get a clear and reliable picture of the situation.

I understand the need for brief assessments in acute hospital settings or in screening or triage assessments for cases of possible dementia - if someone fails a brief screen like the MMSE or Addenbrooke's, there's clearly a problem, but depending on the case, it still may be necessary to do a more comprehensive evaluation, and I would never interpret a normal score on a brief battery as showing no evidence of impairment. Rather, I would say that there was no evidence of impairment evident on the brief and incomplete assessment conducted, and that further testing would be recommended if a more complete or detailed cognitive profile was desired.

I'm sorry if this post has been a little repetitive, I wrote the initial draft for over five hours when I should have been sleeping, but I needed to get it written so that I could stop composing it in my sleep.

PS. I'm not trying to be brave or inspiring or anything. I just want to get healthy again, so that I can enjoy being with my family and friends, and participate in society in a meaningful way. I'm incredibly grateful to have survived for 8 months after being diagnosed with two grade IV gliomas. I intend to keep improving until I'm fully recovered, and to live another 40 years so I can see my children grow up and enjoy cuddling their children.

home at last

Home in my own bed, after a good night's sleep and pain control. The surgeons weren't keen to do a laparoscopy without a good clinical indication, and I tended to agree. So the plan is to recuperate at home and have a review in the surgical clinic next Monday.

Reintroducing food after so long without more than a couple of tablespoons at a time will be a bit of a challenge - half a banana made me feel nauseous just now - but I'll take it easy and slowly get back to normal.

Fasting and IV fluids for a week has resulted in a loss of 3kg, but I don't recommend it as a weight loss strategy. I feel weak in my legs and generally lacking in energy. Thanks to everyone for your support, via emails, texts, and Facebook. it's stopped me from feeling alone.

In appreciation of nurses

The nurses I've encountered in my time as a patient are the most remarkable people. They deal with countless difficult tasks and situations  - from gently washing malodorous bodies and pressure wounds, accepting stool samples, reassuring confused, agitated and paranoid patients, in a calm and compassionate manner that is not judgemental of the patients and has to help patients feel accepted and cared for. 

I feel sad that I never appreciated how well they do their work until I've had the chance to see it first-hand, as a patient. They're unsung heroes of the health system, who get less appreciation than the doctors, perhaps because people don't understand how much they do every day, behind the scenes. 

I am so grateful for the wonderful care I've received over the last 14 months, from everyone who has looked after me, but especially from the nurses. Their kindness and acceptance has helped me suppress feelings of guilt and anxiety at needing others to help me, and has helped me to focus on getting better, rather than feeling bad for being unwell and a burden to others.

I am eternally grateful to nurses for the care they've given me, and I will staunchly defend them if I ever hear people criticise their justified and reasonable claims for better wages or working conditions. Without them,our hospitals wouldn't function, our ill would not be cared for.

Feel free to share with a nurse you know, so they know that at least one other health professional holds them in awe and respect. It's crazy that there is often competition for funding allocation between nursing, medicine and allied health services. We need them all in order to provide the best possible care and outcomes. Big hugs to all the nurses I know. And thanks.

Public vs private

Pooh! Literally. 

I declined the laparoscopy this morning because I was feeling better,all the surgeons seemed dubious about the chance of it detecting anything, it's more invasive and has a longer recovery time than the other scopes, and I figured I could always come back if the pain, nausea, and vomiting returned.

I was all packed and ready to go home this evening when my bowels suddenly started working, my tummy started cramping, and the nausea returned. I've decided to spend another night in here rather than risk going home and have to come back in via emergency again, which would mean waiting for a bed. If things don't improve overnight, I'll have the laparoscopy tomorrow.

I feel very disappointed and sooky. I want to go home, I don't want to stay here, but I don't want to go through the pain, nausea, vomiting admission again, and the waiting in emergency for a bed. 

Soneone made  a comment on Facebook last week that they chose to be treated in the private health system because they "didn't want to hog a public hospital bed." I've been puzzled by that comment all week. We all pay for public hospitals through our taxes, and they're here for us to access when we get sick.  How is it "hogging" a bed to use one when you need it? I always elect to be admitted as a private patient when I come here because it means the hospital gets money from my private insurer for my admission. (And it gets me a paper each day and free tv- it doesn't guarantee a private room, as they're allocated on clinical need). I've never had to make a copayment due to an arrangement between my hospital and insurer. And while I can choose my admitting doctor, I have also been seen by several other members of the medical and surgical teams - something that wouldn't be as available in the private hospital.

I think it is misinformed and rather insensitive to imply that someone with private health insurance who goes to a public hospital is hogging a public hospital bed. 

Elective surgery is the only exception I can think of right now, where private insurance helps take the weight off the overburdened public system by diverting joint replacements and other non-urgent procedures to the private system. That's why i have private insurance, to help get non urgent things done quickly, to cover dental expenses and new glasses, not so I can have a fancy room and menu when I'm truly ill. Private hospitals often don't deal well with serious or complicated health issues, and we all have the right to be treated in the public system through being part of a tax-paying society. To disagree is akin to saying that those who can afford to pay should have to send their children to private schools, this depriving excellent state schools of funding and diversity, and further entrenching a class-system in Australia. I regret sending my kids to a private school for primary school, I think they have missed out on a more diverse and enriching experience than they would have received at the local state school.

Gastroscopy normal

Gastroscopy this afternoon was completely normal. No ulcers, no hernia, no gastritis. Ben looked at the photos and said I had a sexy stomach. I'd feel happy if the pain was gone and would never come back. Just eating lightly tonight has me all crampy again. I wish I could go asleep until the pain goes away.

 Laparoscopy tomorrow. I'm fed up with being a complicated case, and if the woman in the bed next door doesn't turn her tv down soon, I'm afraid I'll get cranky. She has it on all day and until after 930pm. It wouldn't be a problem if I liked football and home and away. Maybe I can change my personal tastes? Or ask if she listen to my preferred shows for the next few days? Problem is, I don't have any. I prefer the sound of silence.

Second admission for severe abdo pain.

Tuesday 20th may

Slept poorly due to abdominal cramping and pain, vomited twice overnight. Just can't seem to keep water down. Ben came home to check on me after taking the boys to school. He ended up taking me to emergency, where I was given morphine, X-rays, and fluids. My infusaport was accessed, but not successfully- they had to reneedle it. I was too tired and preoccupied but the tummy pain to notice.

Wednesday 21st may

Another night in DEM after another night of severe abdo pain and vomiting up water as soon as I drink it. Rapid but not recommended way to lose weight. X-ray's normal, doctors mystified, but white cell count is elevated for the first time in ages. It's good to have neutrophils. And morphine really kicked the pain. At home, both boys have finished all their homework early (first time ever) and Ben's doing a marvellous job. Cubicle 10 in the LGH DEM is pretty good too, nice happy nurses station opposite, with wonderful nurses. It would just be nice to know what the problem is.

Thursday

Haven't eaten since Tuesday morning. Waiting for an endoscopy. And waiting. At least morphine eliminates the pain.

Friday

Looks like I now have a drug allergy: morphine. It caused localised redness and a small welt last night. Today, it caused redness and lots of welts, and a feeling of tightness in my chest. The surgical registrar came running, worried about anaphylaxis. I Took ventolin, they've got me on oxygen, ECG okay, need to have blood tests. This is all so surreal, just wish I was completely well. And I'm definitely having a gastroscopy, not a laparoscopy, some time this afternoon. Time for some intense meditation or sleep. After they stop tending to the bed bound woman with pressure sores in the bed next door. She's not happy.

Saturday morning. The scope didn't get scheduled yesterday, there was some dispute over a gastroscopy vs a laparotomy. CT abdo last night was clear, despite awful cramping, stabbing pains that had me writhing in agony. Buscopan helped settle the cramping, endone, tramadol, and Panadol helped with the pain, which is starting again now that I'm awake. I'll ask about pethedine today. Was too uncomfortable to be very assertive. I'm Hoping to have a shower and a walk this afternoon. Sick of being in bed all the time, but when even sipping water causes cramps, and drinking quickly makes me vomit, I don't feel too brave about walking too far. Did I say they don't give pethedine often? I can't remember why.

Saturday evening:Panadol, endone. Buscopan, and tramadol are keeping the pain down, mostly. Ate some overcooked carrots, two fruits, and one piece of dry tinned tuna for lunch. It's hard to start eating again after 5days with  only two serves of custard, one tapioca pudding, and a cup of salty broth. Gastroscopy will happen on Monday, if that shows nothing, then it will be followed with laparoscopy. While I wait, I'm meditating with my eyes closed to block out the distractions, and often fall asleep. Until someone wakes me to do obs, change my fluids, or give me pain relief. Hoping to have a shower and a walk this afternoon. Sick of being in bed all the time, but when even sipping water causes cramps, and drinking quickly makes me vomit, I don't feel too brave about walking too far. Did I say they don't give pethedine often? I can't remember why.

Sunday

Gastroenterology have ordered 

Over a dozen blood tests, half of which even the nurses haven't heard of. I'm so glad for my infusaport, it makes all the transfusions and blood tests painless. I'm sick of being in a shared ward, people leaving their TVs on, volume up, while they're asleep. Nurses coming in to take other people's obs throughout the night, and speaking loudly all the time. It makes it hard to get a decent sleep, even without the tummy pain, and my abdomen becoming distended like a helium balloon last night. There's lots of gas in there, and it doesn't want to come out. 
I hope the blood tests show something, my liver function tests have been getting worse, and they don't know why- I haven't had any alcohol in over a year, so it might be one of my medications... I'm glad I asked for a gastro consult, at least they look at the big picture, where the surgeons just look for a surgical solution. Gastroscopy should be tomorrow afternoon. Fingers crossed

Sunday evening 

Ben's bringing the boys to visit me each day, it lovely to see them, but I don't like them visiting for too long. I don't feel like talking, not that I have much to say. It's good to hear what they've been doing, until they start telling tales on each other. I feel bad for being impatient and snappy with them- it's not me, it's the pain and discomfort, and not knowing what is wrong. it makes me withdraw and save my energy, and end up looking and acting grumpy. 

God I hope I get over this soon, and that it never comes back. All I can do is keep meditating on being well, and being surrounded by healing love. And sleeping when I can

Any allergies?

I have been lucky to be allergy-free until now. Sadly, it Looks like I now have an allergy to morphine. It caused localised redness and a small welt last night. Today, it caused redness and lots of welts, and a feeling of tightness in my chest. I had some ventolin, and they've got me on oxygen. My ECG was okay, need to have blood tests. The resident was relieved that it wasn't the anaphylactic reaction that it sounded like on the phone.

This is all so surreal, I just wish I was completely well. And I'm definitely having a gastroscopy, not a laparoscopy, some time this afternoon. There was some confusion about it. My surgeon rang last night and said gastroscopy, but laparoscopy was written in the notes. The surgeon has confirmed the former. I don't have the energy to get irritated about it. Just want to feel warm and pain-free.

Time for some intense meditation or sleep.After they stop tending to the bed bound woman with pressure sores in the bed next door. She's not happy. I had to leave the room last night when two orderlies helped two nurses to turn and wash her. It smelt like an adult-sized nappy change, poor thing. At least our rather stuffy room has fans, and I got to do 5 laps of the corridors.

the lost USBs

Major stressor. I can't find the purse in which I've kept the two USB drive which have all of my important files - work documents, powerpoint presentations, data, personal documents - everything.

I'm sure I looked at some old presentations last week when musing about doing something later this year, and, rather than putting the purse away in the inside zipped pocket of my handbag, I must have put it somewhere safe. And now I can't find it.

This is possibly the most stressful thing that has happened to me in the last two years, since Dad died.   Those USBs hold most of my life's work. Some of them are backed up on dropbox, I found some others on a different USB, but I'm going to have to go through my old laptop, our desktop mac, and turn the house upside down to try to find the purse. It can't have disappeared.

Talk about a lesson in attachment being the root cause of all suffering. I'm remembering to breathe, and will not let this stress me. It must be somewhere.

another mother's experience of having cancer

A touching story that I can relate to

I don't want to be a mother today

Facebook experiment

While we were on holiday, I noticed that I was spending at least a couple of hours each day checking Facebook for status updates. I have to do something when stuck in the house by myself, and I don't feel like reading novels or watching TV.  I'm a compulsive reader, and Facebook was giving me lots of status updates from sites such as the Australian Greens, Australians for a Progressive Society, Wixxyleaks, Australians in Support of Asylum seekers, the Australian Conservation Foundation, and similar sites that share information about the things that matter to me: a society that is compassionate and inclusive and that recognises the urgent need for action on climate change. Unfortunately, given our current government, the news from these sites is overwhelmingly depressing, and I'm going to start blocking them, so that I don't get increasingly depressed about the future of our country, society, and environment, and the fact that a pack of lying hypocrites were voted into power by a gullible Australian electorate who believed the lies of the LNP prior to the election. I can't believe that everyone who voted  for this government supports the actions of this government. I can't believe that my fellow citizens believe in punishing the unemployed, the poor, the disabled, the old, the sick, and people fleeing persecution overseas.

It just makes me incensed, and I don't need the stress it's causing me.

So I've deleted the Facebook App from my phone and iPad, and will henceforth only access it from my laptop. In the week since I deleted it from my phone, I've had more time to meditate, recuperate, and concentrate on being calm (apart from being upset by last night's federal budget).

BTW, having a bowel obstruction is a quick, but not recommended way to lose weight. I lost 2kg in the week that I spent in hospital, bringing me down to 83kg - nearly within the recommended weight range for my height, which will reduce the risk of further cancer. That's a loss of 11 kg since I was diagnosed with breast cancer in January last year. Since October, I've been following a diet low in sugar, refined carbs, and processed foods, lots of vegetables, moderate protein, and healthy fats. It's resulted in a gradual weight loss (helped when I got off the steroids that made me ravenously hungry), and I'm feeling healthier each day. But damn, I need to have a nap.

My response to the federal budget - and a listing of all the treatments, procedures, and investigations I've received in the past year, largely free of charge, thanks to Medicare

Treasurer Joe Hockey at the National Press Club today: "Australians need to take personal responsibility for their health"

Dear Joe

I spent most of the day after the budget in tears at the cruelty and lack of compassion displayed by your government. If we didn't have Medicare in its current form, Ben and I would probably be bankrupt by now, and I'd be dead, leaving my two children without a mother. This is because I was diagnosed with early breast cancer in January last year, and the was found to have two aggressive brain tumours after the breast cancer treatment finished last August. 

When you say that we need to take personal responsibility for our health, what do you mean? Do you mean that we're not doing that already? Don't you understand that people generally try to get their health problems sorted by going to the GP, which is essential in early diagnosis and treatment, in preventative health and in management of chronic disease. 

In regional centres like Launceston, there is already a shortage of GPs, and very few bulk-bill. The ones who do bulk-bill are taking a pay cut because they understand the financial pressures on their patients - now you want to punish the patients for having compassionate doctors?

I imagine that most Australians have little understanding of how wonderful our universal healthcare system is. I've worked in public health for over 20 years, but I didn't appreciate the excellence and efficiency of the service provided until I was diagnosed with breast cancer in January last year.

In the past year, I've had: a mastectomy and 6 cycles of chemotherapy for early breast cancer; about 12 admissions to the emergency department of the local public hospital (each triage in emergency costs about $600) and have spent about 100 days in hospital, each acute bed day costing about $1700 per patient. Six of those admissions were with life-threatening febrile neutropenia requiring treatment with IV antibiotics. I've had 5 operations requiring general anaesthesia (including 2 rounds of neurosurgery worth about $26,000 each); another requiring a local anaesthetic for the removal of my first infusaport that got infected; another GA to insert a second infusaport. I've taken countless medications largely covered by the PBS; more than a dozen chest x-rays; several CT scans; innumerable blood tests; over 50 injections of GCSF (to keep my bone marrow working and prevent further life-threatening infections) that would have cost us $2000 each in the US (50 x $2000 - do the maths yourself). There have also been two mammograms and 3 ultrasounds; 2 breast MRIs (costing us over $1000 in total because they're not covered by medicare); 7 MRIs of my brain (worth about $600 each but free thanks to Medicare); a bone marrow biopsy to try to work out what was wrong with my blood counts; & three private hospital admissions (for the mastectomy and two rounds of brain surgery). I have also needed several blood transfusions, and went through radiotherapy for my breast and brain tumours. I've just been discharged from hospital following a bowel obstruction, requiring a colonoscopy to rule out adhesions or bowel cancer. And my most recent mammogram suggests that I may have more cancer in my other breast. The MRI suggests it's non-invasive, but I 'm not keen on taking the risk. My body can't cope with more chemotherapy, so I'm planning a prophylactic mastectomy when I'm feeling strong enough. While Medicare would cover the cost of bilateral breast reconstruction after breast cancer, I've had more than enough surgery for one lifetime, so I won't be getting new boobs, even if they are free. All the costs that I'm aware of is at least $337,400, but I don't know the cost of the surgeries, the X-rays, CTs, mammograms, biopsies, pathology, and medication.

Thanks to our universal healthcare system we have hardly had to pay anything - just a small amount for PBS-listed medications, and for private physiotherapy for lymphedema in my left arm. It means we don't have financial worries on top of my health problems, and my income-protection insurance means that we are incredibly lucky to be able to afford $1174 per month on a non-PBS listed drug that has been shown to significantly improve survival rates in my highly aggressive and incurable brain cancer. (And that cost is half-price, thanks to Roche giving it to us on compassionate grounds)

This kind of care and lack of financial hardship has been available because of Medicare,  which allows for people to access the healthcare they need, when they need it, at minimal cost. You can't predict when people are going to need healthcare like I've received (I hope no-one goes through my experience), and it should continue to be available to everyone, irrespective of their ability to pay.

In saying that we need to take personal responsibility for our health, are you saying that the 1 in 3 women and 1 in 2 men who will develop cancer in their lifetimes are somehow responsible for it, or that they should have to pay for their treatments themselves? I guess it will be cheaper for the government if they do, as they won't be able to afford to, and won't live as long.

My doctors were astounded when I was found to have two primary brain tumours after my breast cancer treatment was over - no-one could have predicted it. And my frequent neutropenia was unexpected as well. Are you saying I need to be responsible for all of this? We pay our medicare levy and private health insurance, I've worked as a neuropsychologist in public health for more than 20 years seeing people with acquired brain injuries, stroke, epilepsy, dementia, and other neurological conditions. Are you saying they should be responsible for their health, when getting through the day is an enormous struggle for many of them. How much more responsible do people need to be?

I've been unlucky to have had all this happen to me, but I count myself very lucky to be still be alive and around for my boys, and to be living in a country where this kind of care is available to everyone, irrespective of their ability to pay.

I've been watching successive LNP governments all my life, and I am convinced that your ultimate aim is to dismantle Medicare and our universal healthcare system, replacing it with a user pays system like the cruel and ineffective one in the US. Why do you think Barak Obama has tried to set up a universal health care system like ours over there? (Hint: their system is broken.) People who can't afford to pay don't get treated, resulting in poor outcomes or death. This is clearly unacceptable, unless you have no compassion for your fellow Australians. People In the US  with private insurance face hefty copayments and wrangling with insurers for payments for various services. Medical expenses are the largest cause of bankruptcy in the US, just as they were here before the introduction of Medicare. This is why I'm writing, I see the copayments in the budget, and the axing of funding to states in health and education, as the thin edge of the wedge when it comes to dismantling universal healthcare in Australia. We can't allow this to happen, the costs to individuals, families, and society will be too great.

I imagine you have various insurance policies for your family, just in case you need elective surgery in a hurry, have a house fire, crash your car, get diagnosed with a critical illness, or are unable to work for a period of time. You expect your insurers to look after you if the unexpected happens. Being uninsured would be too much of a gamble even for someone on your salary.  This is what our universal healthcare is for, to cover every Australian who needs it, despite their level of income or personal wealth. It is paid for by the community, and the government's job is to strengthen and protect it for current and future generations. Not to undermine and dismantle it.

If you want to raise more money for Medicare, raise the Medicare levy by a small percentage - this will be less painful than hitting poor people with copayments. If you want to raise more money for the state-administered hospitals, axe the private health insurance rebate and stop making it compulsory, and put the savings into hospitals. 

I'm sorry Joe, but either you don't understand that our universal healthcare system is the envy of the developed world, or you are an idealogue with no compassion, apart from caring for the handouts to your party from Rinehart, Murdoch, and other big businesses who don't care about the welfare of other people. Even Gina and Rupert would probably balk at the true cost of treatment for cancer if they knew what it was.

It galls me that so many in your party claim to be Christians. Your budget is the kind of behaviour that Jesus spoke against. Take a good hard look at yourself, LNP, and leave universal healthcare, Medicare and the PBS alone.

BTW, history shows us that recessions always follow the introduction of austerity measures - take Thatcher, Regan, Bush, Bush and the european countries. It's a shame that our distance doesn't give you a sense of perspective.

Going home tomorrow, I hope

I'm feeling great right now. It's a rainy day in launceston, my favourite kind for staying indoors. I've just walked for at least 10 minutes up and down the hallways, and felt strong and confident. I even used the Physio stairs in the hallway to practice. I stopped at 4 rounds because they were a little noisy, and I didn't want to add to the racket at this end of the hallway.

The surgeon came and saw me this morning and said my abdomen was noticeably less distended than on Thursday, and that I can go home tomorrow if my bowels are moving. I had tomato soup for lunch, and it seemed like the most perfect food I've ever had: not sweet, not too salty, warm, but not too hot. I loved that soup! I hope I get it again tonight.

Ben and the boys came in with some massive, healthy burgers from a local shop- wholegrain bread, lots of vegetables, including beetroot, which I finished off. It's a pity that veggie burgers often have an unpleasant patty, this one seemed fried, so I didn't eat it. I'm still feeling tentative about eating, despite the magical powers of tomato soup, and I don't want my bowel to obstruct again. If I take things easy and slowly, it should be ok, I hope (no one has told me any different)

I didn't sleep well last night, had a pesky headache that didn't respond to Panadol. The nurses keep saying "don't be a matyr to pain", but it seemed a bit excessive to take morphine for a persistent headache. I relented this morning and found myself pleasantly drowsy and pain free, but woken every half hour or so by people coming to take blood, give medications, do obs, bring breakfast, take the tray away, ask if I wanted a drink, bring the paper, and then Ben and mum called. I ended up turning off my phone. 

I managed to have three or four naps where I dreamt I was tucked warmly in a bed on a boat, or a sleeper carriage in a train, with the rain pouring down outside. Bliss! I'll try to go there again this afternoon. 

Four more glasses of water to drink before I sleep- my BP was 90/68, low again, and rather than accepting that some people tend to have BP in the lower ranges, they tell us to drink more water. I'd prefer to sleep, but I'll be good and drink up, it will have to be beneficial to my bowels.

I can't believe that in one year I've gone from being independent, healthy, and the delusion of being bulletproof to being so familiar with hospitals, cannulas, surgery, bloods, infusions, and how to try to get decent food off a hospital menu. I'd rather not have had 14 admissions to the Lgh, I'd rather not have experienced any of this, but what choice do I have? I can't give up trying to get better, I gave birth to my beautiful boys in 2002 and 2004, I want to be there for them as they traverse through adolescence and enter adulthood. I want to be around for Ben, who is trying so hard to support all of us.

I asked mum if she could come and stay a few days when I get out of hospital. She said she might be able to, but she's very busy at home, trying to tidy up the 46 years of odds and ends collected by our family. She said she doesn't know if she has 2 or 17 years left (she's 83 in June), but she doesn't want to leave it for  my sister and me to clear up. It's the first time I've heard her talk like that, and it makes me sad that she's spending time and energy on worrying and decluttering rather than enjoying life. 

I understand where the desire to tidy up is coming from: when grandma died in 1993, it took over a month for mum and aunty Betty to go through her things and distribute them amongst the family, and Mum said she didn't want to put Eluzabeth and I through that. I still regret not taking the large box of letters that Pa had written to grandma when they were courting. Caroline, Elizabeth and I never knew him, and it would have been one way of getting to do that. My aunt insisted on throwing them all in the bin, she wouldn't even let me read more than one of them, it only spoke of daily activities  and family news. I'd never seen such steely determination in her before.

I had planned to spend a day each week at mum's place after my breast cancer treatment was over, but events got in the way. She's always relied on us girls to help with sorting and decluttering, but with me sick, Elizabeth in Budapest, and Caroline in Queensland, she's on her own. I'll see if I can hire someone to help her, and help me with my place too. I just haven't had the energy to sort things and put them away since September, when recovering, managing my fatigue, and keeping well has been my priority. 

Like mum, I feel a desire to have my things in order, to not leave a mess for others to clean up. I'd like to keep the meaningful relics of my life, identify and sort the photos so they're not lost in a digital void.  But I don't want to devote all my time to doing it, there are far more important things to do, like sharing pleasant events with family and friends, accumulating experiences and memories, not possessions.

 If we didn't accumulate so much, hold on to so much, it wouldn't be a problem. Another example of attachment causing suffering!

 If we could just let it all go, there'd be no need to worry about all those unseen slides of our childhood, those  photos of my aunt and mother as beautiful young women exploring the world. I want to have them all collated and printed, to share with my family, because seeing them reminds me of all the hope and potential in each life, and helps suppress memories of arguments and silly things that obscure memories of the love and goodness in our families.

I've found at least one person who offers the services I need in launceston, I'll  call her next week.

Mum has been looking very tired lately, I hope she's ok. I'll encourage her to get her health checked, even though she doesn't like me doing that. She's very independent, doesn't like asking for help, doesn't like being encouraged to seek help.  I'm probably a bit like her. I find it hard to ask people for specific help, and feel ashamed to admit to difficulties.

Four glasses of water and an hour later: BP 120/96. Headache is back, but I'll put on my Calm.com app (thanks so much, Dionne!), and get some rest before dinner. 

I wish you all love, happiness, and pleasant memories to take with you every day of your lives

Colonoscopy all clear

I can start eating and drinking again today, there was nothing sinister on the colonoscopy. My tummy is still a bit sensitive, so I'll take it slowly- some bland soup or custard and stewed apple would be good for starters. If the kitchen has any. My BP is a little low, so I have to drink water and keep my legs up. I just want to sleep. Hope my tummy feels better soon

Twists and turns

Writing on my iPhone from a surprisingly cosy bed in DEM. I didn't expect to be in here again, my bloods were looking good when I saw the haematologist on Tuesday, and apart from a tummy ache and mild constipation that I attributed to a change of diet on our two-week sojourn in Queensland, I was feeling well. My strength had improved from walking to our rooms up the hill on Fraser Island, and I had a great season with the Physio on Tuesday morning. I suppose that spending the day in bed with a heat pack on my tummy on Monday wasn't normal, but constipation can be painful, and it was taking a while for the lactulosee to work. Vomiting up my dinner of vege juice after taking a big glass of water on Tuesday night wasn't pleasant, and I thought I should come in to hospital, but my oncologist said it was unlikely I had a bowe obstruction. 

My intuition was right, again. 

The pain kept worsening on Tuesday, and did not improve despite taking two baths, two showers, Panadol, clonazepam, and trying to sleep in the spare bed. I couldn't lie stil, my tummy was full of crampy, stabbing pains, and I'd only passed gas in the last two days. I ended up taking a taxi to DEM at 130 on Wednesday morning. An X-Ray showed some sort of obstruction, which appeared to be a pseudo obstruction or functional obstruction on CT. So I'm having a colonoscopy in the morning, to check. 

I've only been allowed to sip water since I've been in here, but I'm on IV fluids, and my tummy still hurts so much at times that I don't feel hungry. I've had two doses of morphine for pain relief, which have helped reduce the  pain from 8-9 to 2-3 /10, but the pain keeps building when I wake up. Morphine also helps me pass the time in surprisingly deep sleep, though it also alters time perception- I thought it was morning when I woke last night, and asked them when I was having the scope. The lights were on and the staff were so noisy, I was sure it was morning. 

They gave me an enema yesterday, which wasn't too unpleasant, and seems to have cleared up any blockages down under. But my gut still hurts. They say these things aren't infrequent, and can resolve  by themselves. Itvseems the bowel wall can get weak and constricted. Bloody ouchy though.

The pain, the hour (1235 am), and the iPhone means that I'll be economical with this post. I was writing lots in my head while we were on holiday, but enjoying watching the boys cavort in the pool seemed more important than being immersed in writing. 

Time to more morphine, if they'll give it to me. Pain 5-6/10 and rising.