Background and overview

I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.

My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.

If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.


Tuesday, 10 June 2014

Post-script to my recent post on what patients want from a Neuropsych assessment

I neglected to mention other types of patient who may be distressed by a Neuropsych assessment.  Firstly, there are some patients who have insight into their cognitive difficulties, and who find it confronting to not perform as well as they expected on formal testing. I've seen a few patients who came wanting to know that everything was okay, despite their history of neurological injury or disease.   Being presented with evidence of minor weaknesses with things like memory or concentration, was sometimes hard for them to tolerate. In hindsight, the referrals weren't clinically necessary, they were more to satisfy the patients own curiosity or to allay their anxieties. Two patients were dissatisfied with results that confirmed their fears of cognitive weaknesses, they had convinced themselves they were okay, and they'd hoped the assessment would prove others concerns were unfounded. This outcome might have been circumvented by being clear on their reason for the assessment, and talking through the possible outcomes of an assessment before commencing it - how would they feel if the results were worse than they expected? Are they willing to proceed knowing that the assessment might reveal unknown difficulties? Of course, if an assessment is required for return to work purposes, or capacity assessments, the results of our testing are often not welcomed by the patient, but the patient is often not the client in these third-party cases, which creates a totally different dynamic to the curious self-funded or public patient who essentially wants to hear that there is nothing wrong with their memory or cognition despite a history or ABI or MS. Accepting referrals without a clear clinical indication puts the clinician at risk of having a dissatisfied patient who is angry with the clinician for their test results. 

 Secondly, some patients who get distressed have struggled with cognitive issues for some time, and find relief and validation through having an assessment. I recall an elderly woman with epilepsy who burst into tears after struggling with the WMS. She said she wished her husband had been there to see how hard she had found it, because he didn't believe her memory was as bad as she thought it was. For her, the experience of being tested and finding it difficult validated her everyday memory problems, and her distress was from years of being harangued and berated by her husband for not trying hard enough. She was grateful to finally have independent evidence of memory impairment, and to receive education and advice about the causes and strategies to deal with it.

Finally, there are people who have had brain conditions who may be distressed by our assessments because it makes them more aware of the difficulties they have been having. Sometimes these assessments are necessary, other times they are not.  I'd put myself in this category. I know I'm not as sharp as I was before, and I don't want to know how much function I've lost. There is no clinical need for me to have an assessment at the moment. I am on extended sick leave from my job, and my oncologist writes reports for my income protection insurance every three months to say I'm not yet ready to return to work. Having a neuropsych assessment would only make me anxious beforehand, and possibly depressed afterwards. There is not clinical need at present. 

I know my working memory is not as good as it used to be.  I find it harder to multitask and find it easier to focus on just one thing at a time. Being distracted from something before I've finished it is like mentally slipping into neutral while going up a hill and trying to re-engage the gears. I get easily rattled by multiple sources of noise or flashing lights. Music in cafés really annoys me sometimes, and I'm glad to have a bottle of clonazepam in my bag - it's meant to prevent me having more seizures, but it's been useful once or twice in loud and noisy settings. If I can't maintain a peaceful environment, I sometimes get quite irritable, especially if I'm hungry, nauseous or tired, or more recently, in pain. I have only had a couple of memory lapses, where I forgot things completely, like having been to the school auditorium after my surgery last year, only to have the memory slip back into my awareness later. I don't think I'm more disinhibited than I was before (I was always a bit open free with expressing my thoughts), though it's different now, and not the kind of insightless disinhibition seen with brain injuries. Having dealt with a number of life-threatening conditions over the last 15 months, I'm less inclined to hold back when I feel I have something important to say to the people I care about. I'm aware that I sometimes disclosing more personal information than other people might do, but it helps keep me sane, and if we hide away how illness affects people, how are they ever going to understand what people go through? I realise this is probably confronting for some people, and  upsetting for others, or both. Writing is a way for me to process my experiences, and to deal with the social isolation imposed on me through being unable to work or to drive, from living in a town with more aquaintances than friends, and having had six or seven weeks in hospital this year. 

Having gone through all of this has been a transformative experience. I'm more aware of the important things in life, more exasperated by the trivial - and more adept at ignoring them, and more appreciative of the preciousness of family, friends, health, happiness, and existence. I'm acutely aware of my own mortality and hope I still have much to share with people, and much time in which to do it. 

Perhaps I should be exploring all these thoughts with a counsellor or pastoral care worker? I've seen someone a couple of times, but end up feeling exhausted and more lonely than I was before. It's probably time to see a psychologist. I'm finding it increasingly hard to deal with the changes, losses, and uncertainty about the future on my own. Being deconditioned and in pain doesn't help - my sadness is more a state than a trait at the moment, which was given temporary relief by calling some friends.  I feel like I'm violating societal taboos by writing about all this, but I'm not forcing anyone to read it, you're presumably here by choice. Thanks for your support.

Time for some lunch and more pain relief. and a nap before the kids come home. 
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