Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: scary diagnoses and patient education

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.

Wednesday, 4 December 2013

scary diagnoses and patient education

an email I sent to my neuropsych colleagues on a listserve a couple of months ago.

Dear colleagues

If, like me, you have always been interested in knowing about the brain, you may have found some conditions too horrendous to contemplate because of their reputation for rapid and terrible suffering and mortality. For me, these conditions included CJD (which I saw rapidly consume the 48yo mother of a beautiful Indian bride) motor neuron disease, advanced Huntington's disease, behavioural variant Frontotemporal dementia (especially heartbreaking to see it steal a 22yo new graduated mother, and how it destroyed the family of a loving 36 man, who had taken sides on what appeared to be a pending divorce before the diagnosis became clear. Aggressive brain tumours are also in my feared conditions list - they have the power to kill rapidly and efficiently, and median survival outcomes seem dismal.

I've been thinking about these conditions where we rarely seek to tread, and how our fear gives then power beyond reason - and the patient can get lost. At worse,they sense is that something very bad is happening, and that things are dire. At best, they are informed and supported and given hope that not all is lost. Look at Stephen Hawkings! still going strong with MND. Look at the late Christopher Reeve. Look on the internet, and you'll find heartening tales of survival and hope for people with all manner of terrible diagnosis. Act as an informed clinician, ignore the awful what-ifs, and enhance the quality of life of the person who has a very unfortunate diagnosis.

To help demystify one of my top scary brain disorders, I would like to recommend the following article to you.

http://neurosurgery.ucsd.edu/glioblastoma/

It is excellent. It provides hope through the use of calm, factual, plain English, without the emotive drain of survival statistics.

Good for cutting though the fear of death and disability.

We need to cultivate hope in our patients and their families. Even if a diagnosis is grim, there is always hope. There will always be love from family and carers. There can be dignity in disability. That is, unless we put our fears in the way, then we minimize the potential of the patient and family to make the most of the situation they are in. We're not helping the patient in such a situation, we're dealing with our own fears of death, loss and suffering.