Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: July 2015

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.

Saturday, 11 July 2015

on having memory, attentional, and problems

It seems supremely ironic to me that I'm having some difficulties with my memory, given that I studied neuropsychology to better understand the functioning of the human brain, in order to help people with brain conditions and their families or carers to understand and deal with the changes they were experiencing. I've been surprised by my recent experiences with fatigue, regular distractibility, reduced concentration, reduced tolerance of noise and bright lights, memory problems, and their impact on my family.

I'll try to write more tomorrow. I need to turn in.

Back in Melbourne (Saturday11 July, 934pm)

Feeling a little overwhelmed at being back in Melbourne, staying at Ben's sister's furnished but vacant house in Thornbury. This is the house where Ben was living with his sister when I met him, their parents were staying with their oldest son, Solomon, in Canberra.I finally met them when they returned, and was impressed by their kindness, hospitality and welcoming attitude, not to mention their willingness to let me stay here during the week and work on writing up my PhD thesis on the days when I wasn't attending the nearby psych hospital where Ben and I met in 1994. I found it very helpful to work on writing my thesis here, Ben's mum would regularly ask if I wanted a cup of tea in the mornings and afternoon, and would tell me that lunch was ready after she'd finished cooking. It helped me to focus on writing my thesis, and to feel accountable for getting something done each day. I found that I was less distracted here than in my flat in Ivanhoe, or in my share-house in Carlton, or in my office or at the lab at uni. So this house has many happy memories for me, and Ben. It's a shame it's smaller than our place in Launceston, otherwise we'd have packed everything up and brought it over here. Instead. Ben packed one of our cars with clothes and other personal effects, and came over on the ferry. The boys and I packed a suitcase each, and flew over the next day. We'll start looking for a house to rent near the boys' new school tomorrow or monday, and I hope we find something soon. It's not that I'm highly attached to our home in Launceston, I honestly would like to keep it as somewhere to stay when we go back there in holidays, or to see Mum, but this place just isn't big enough for the four of us to live like we did in our old place

the whole point of coming over here from Tasmania is so I'll have easy access to specialist opinions and treatments if my brain tumours ever grow again. The boys (10 and 13) are getting a bit too old to be missing out on school when I need to travel to Hobart or Melbourne to see a specialist or have treatment. I hope, and pray, and meditate, each day, that I will continue to stay and function well each day, and that I'll no longer be burdened by the fatigue that's been bothering me recently.

Ben's been regularly irritated and frustrated by my fatigue, and predicting that I'll become an invalid if I keep attempting to overcome the fatigue by sleeping during the day. I certainly don't want to become an invalid, and I'm not happy about how my thighs feel weak and wobbly. I need to walk at least 30 minutes each day and to do some core strengthening work to fight the de-conditioning that has increasingly bothered me the last couple of weeks.

A very good thing about being in Melbourne again is about having access to many old friends, and to Ben's family. I'm hoping we'll catch up with at least one friend and one family member each week. We've already seen two of each, and we will see more family tomorrow, including Ben's mother who lived with us for 8 years, so there is much to anticipate happily here.

It's getting cold now, sitting in the lounge room, even though the gas ducted heating is on. I'm heading off to bed to get warm. I hate feeling cold.