Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: The charity call

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, 2 October 2013

The charity call

The most absurd thing just happened, which has given me a good laugh.

I slept for 9 blissful hours last night (so good, after not having slept more than 2-4 hours each night since the 3rd of September, thanks to Dexamethasone). I primed myself for sleep by having a bath with lavender oil and ABC classic FM, hot milk, a temazepam at 9 and again at 1230). It worked well the night before, and I'm looking forward to it tonight.

I've had a busy morning (visit from a friend who took me to the OPR physiotherapist at 11, where I learnt efficient ways to roll over and sit up from lying down; how to sit to stand safely and efficiently; pause before walking; walk with my forearm crutch at all times (like Jake the Peg, with his extra leg); put down the crutch before sitting, and not pick it up until standing; make sure to swing my right foot up when walking (the toes were tending to catch, DK why); and to do gentle gluteus maximus raises to engage those muscles each day. I basically need to curb my natural tendency to do everything quickly, and I need to be as slow and careful as a turtle for the next two months, until my RT/CT is over. Then we'll look at rehabilitation.

I am feeling quite exhausted from all that, so I had to sit down at the dining table to make the sandwiches, but that was fine, and better than trying to do it leaning against the bench in the kitchen. David was an excellent butler, bringing me the ingredients and putting them away.

So there I was, brushing my teeth after lunch (food is tending to collect on my teeth on the left, and my dentist advised me to brush more often when I saw her yesterday). The phone rang - one of those irregular rings that suggest telemarketing. David races to bring me the phone.

Male voice "Hello. I'm calling on behalf of a Kids with Cancer Charity fund"

Me: "Hello! Can I tell you an unusual story?"

Him: "Yes."

Me: "Well, I was diagnosed with breast cancer in January this year. And then, just after I finished my treatment for that, I was diagnosed with two brain tumours, completely unrelated to my breast cancer. I've donated to a bowel cancer charity since 2005, I also donate to Greenpeace, the Red Cross, and a number of other charities. While I fully support your organisation, I think I'm donating to enough charities at the moment, and I'm busy working on surviving, so I'm sorry, I won't be able to help."

Him: "Well thank you very much for your time."

It struck me as so absolutely absurd, I laughed for a good few minutes about it. I feel sorry for the poor man, he was probably gobsmacked, and maybe it was cruel of me to do it, but we have a silent number, I hate calls like that, and I think I do support enough charities and other organizations already (not that he'd know that).

Now to sleep, perchance to dream.....