Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Father's day

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.

Sunday, 1 September 2013

Father's day

1/9/13

I'm having one of those evenings when i just feel like crying, without really knowing why.

It's the second father's day since dad died, and memories of his gentle, smiling presence kept coming back to me today. I felt guilty for the 24 years I spent in Melbourne, away from him and the rest of his wonderful family, who seemed to excel at getting old and sick and dying. I knew I was avoiding facing my fear of death and seeing loved ones suffering by staying over there, but it stopped me from spending more time with them and creating more memories. It's as if I didn't want my glowing childhood memories of loving uncles and aunts, and cousins, corrupted by seeing them getting old. I know now that dying often takes a long time, and that the person isn't lost while they're dwindling, though the memory of seeing aunts and uncles struck down by dementia, delirium, and cancer, still breaks my heart. I still loved them when they were suffering, I just felt impotent that I couldn't help them. I know that remembering them, visiting them, made a difference. I feel guilty for avoiding them because it upset me to see them like that. I don't feel like this all the time, just periodically, when I think of them.

I feel exhausted, despite sleeping for two hours this afternoon. I'm feeling lonely, now that the daily interactions involved in attending treatment are over. I've given up on thoughts of renovating the house this year, I can't imagine having the energy to do it in the next year or so. I still have 6 months worth of paperwork to file away, and I don't have the energy or inclination to get involved in any CCN projects that would have previously been inspiring and exhilarating.

I would love to take ben and the boys away on holiday, but we can't go anywhere while our old dog clings to life., And I'm told its bad karma to wish a speedy, natural end to his suffering. I am having serious trouble imagining a normal future tonight. They say that the fatigue will pass, that things will normalize in time, so I have to believe it, though it feels like my whole life has been turned upside down.

Am I getting depressed? Feelings of guilt, worthlessness, sadness, pessimism and anxiety about the future, anxiety about mixing with large groups of people, irritability, sleep disturbance, intermittent tearfulness. Yep, lots of symptoms of depression there, but luckily it's not pervasive, and in the sunshine of an early spring morning, the days after Father's Day, I'm feeling rested and optimistic again. And determined to see f I can improve the cancer service in my home town by helping them set up a coordinated multidiciplinary cancer recovery and rehab Service. If I'm feeling set adrift now that my treatment is over, how would other patients be feeling?