Wednesday 17 June, 1138am.
This will be a quick update to while I sit in the sunshine on my bed. I spent 10 minutes on the treadmill last night, in the hope that it would help me to sleep well. I'm not sure if it did, because Nathaniel kept moaning in his sleep from the room next door, and I ended up going to cuddle him in the hope it would help him sleep more soundly. It was lovely and warm in his single bed, probably because he had two donnas and a quilt over top of him, and there weren't any dramas about him getting up and off to school on time. I slept a little longer, have had my beetroot, celery, and pineapple juice for breakfast, but I still feel the urge to sleep some more.
A new realisation has hit me this morning - I'm hoping that writing about it will give me the energy I desire, and also provide something useful on this forum.
I never had any inkling of what it was like to be unwell until I've experienced it myself in various forms over the past couple of years, first with the breast cancer (mastectomy, chemotherapy, 5 episodes of neutropenia during the 6 cycles of chemotherapy). Then with having brain surgery 4 times, first for the first two tumours in 2013, then twice again this year for the tumour that appeared and then grew back.
In my training and professional career, I worked at several different facilities in Melbourne, Boston, and Tasmania. I know what it's like to enter a new facility and to start work there, and to become familiar with the various treatment teams over time. Each time, I understood that the patients were going through a range of experiences, which were sometimes distressing to them, but I had no inkling of what it actually felt like for them. Perhaps that's because as a neuropsychologist, I'd been taught to focus on taking a history from the patient, and perhaps also their family/spouse/carers, in order to understand the symptoms of cognitive, mood, or behavioural change that had affected them, followed by me doing an assessment to obtain a comprehensive and impartial understanding of their wellbeing in a range of domains, including cognitive functions like memory, attention, problem-solving, reasoning, language, processing speed, their mood/emotions/behaviour, and other traits or abilities. Sorry, I don't think I've ever described neuropsychology like that before, though it's not totally incorrect. It all seems very pedestrian after what I've been through. The sun is shining on my face through our bedroom window, and I would dearly love to lie down and take a nap to restore my energy levels, like I did for much of the day, to no avail, yesterday.
I will force myself to write some more now, and then maybe I'll write another post later about these revelations.
Having a brain condition like I've had has been very confronting. I'm determined to do my best to get through it, and to live at least another 30 years in a life filled with enjoying the company of others, especially family and friends, and nature. I know that we will all die one day, but I have no desire to do it for a long time yet. Life is definitely worth living, and my life has been wonderful up to now. I love the feeling of the sun on my body, the sound of the wind in the trees outside, and the calls of the birds. I even enjoy the sound of the dog in the back lane. I love walking barefoot on the sand, and to feel the sun, shade, and breeze as I walk outside. I want to do much more of that in the many years ahead. I refuse to give up or give in to anything.
I don't recall discussing thoughts on life with any of my patients when I worked as a neuropsychologist. I only remember seeing three who had rapidly progressive and potentially terminal illnesses. One of them had been diagnosed with Creutzfeldt-Jacob disease and was declining rapidly in body and mind in the months before her daughter was to be married. One of them was a young nurse who had just finished her training, and who had surprised her family by having a son. The other was a man in his 30s who had suffered a deterioration in his marriage after his behaviour started to decline. Both he and the young nurse were diagnosed with early onset frontotemporal dementia on the basis of neurological, neuropsychological and neuroimaging results, and neither had much, or any insight into their conditions. I tried to help their families as much as I could through education and recommendations, but I don't know what difference it made. It was just too hard to do, especially when the neurologists were also struggling to help the families deal with the rapid and unexpected change in their loved ones.
Ok, I'm glad I still have some insight into the things that have happened to me, and that I can sit here in the sun and write about what it's been like to be a patient, and to hope that my blog will help others to think about the effect of brain conditions on individuals and their family. I really wish this wasn't happening to me. I wish I could just lie down, take a nap, and wake up feeling refreshed and ready for a new day ahead.
I don't need anyone to sit with me and give me a neuropsychological assessment at the moment. I know that my memory isn't as good as it once was. I know that my attention and concentration aren't as strong as before. Repeated sounds from the television, or the roadworks outside, can be very irritating to me, and it's very hard to focus on cooking in the kitchen with the sound of the television in the background, or to deal with the food preparation and repeated requests from the kids for food or drinks. I spend a lot of effort staying calm and focussed on the tasks at hand, and it's very sad when people get annoyed with me, because, apparently, I frustrate them when I forget things, or don't think as clearly as I used to.
The experience of having had brain surgery twice this year has taught me something new and unexpected about what it's like to have a right anterior temporal lobectomy. Our focus in the epilepsy surgery program was on "material-specific" memory problems after temporal lobectomies. Past research on epilepsy surgery patients had shown that left temporal lobectomies often resulted in verbal memory problems, and right temporal lobectomies resulted in visual memory problems. I wonder if conceptualising them in this way depended on the tests of memory used by neuropsychologists? Our tests usually measure visual or verbal memory functioning. I vaguely recall reading some articles about autobiographical memory. I don't recall having any tests that measure it. There were some tests that required people to remember faces, but I can't remember what they were.
I know that sitting down with a colleague and going through any versions of the Wechsler Memory Scale (versions I, Revised, III, or IV) would be very frustrating or alien to me at the moment, just like it was to many of the patients I saw, because those carefully designed, constructed, and standardised tests do not reflect what it is like to have memory problems in real life. Sure, neuropsychologial tests like the WMS can tell neuropsychologists how a person is performing compared to others of their age, and if they are performing in the manner expected from their age, education, and occupational background. I guess a neuropsychological assessment can tell a patient that they're performing in the expected range, or if there are particular strengths or weaknesses. But that's only limited information for the person sitting on the other side of the desk who knows that they're not remembering things as well as they used to, because they often have to ask their children or families questions about cups of tea or if they've seen that show or movie before. None of that is tested in neuropsychological assessments.
Darn it. The sun has gone behind a cloud, the road-work machine has started grinding away at the gutter and drains outside, and Ben has gone to get something fixed on the car. I still want to take a nap, and to wake up feeling refreshed and ready to get through the many things that I need to do in the house.
I might write some more later, probably on another post. I feel like I've done okay with this one, and that I may have shared some novel thoughts or insights that could be helpful to other patients, their families, and to neuropsychologists who work with them.
Oh, the other thing that I forgot to mention, is the importance of considering psychological or psychosocial well-being in every patient. I was taught to evaluate mood and anxiety as a routine part of my work, and to consider psychosocial factors in every patient I saw, but it was done as a way to evaluate the effects of anxiety, mood, and other factors on test performance, and in order to develop recommendations that were suitable to the patient. I don't think I was very sophisticated in doing that, even though I developed a degree of proficiency in using the MMPI-2 as part of a comprehensive neuropsychological assessment, followed by individually targeted feedback and recommendations.
Sheesh! That roadwork machine outside makes a truly irritating sound.
Now it's cutting though something, maybe to get at the stormwater drains under our road. Again. I wish it would just go away, or that I had gone out with Ben when he left 15 minutes ago. I just want peace, tranquility, warmth, and quiet. Heavy-duty meditation session about to start.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
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.
