Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Recovering on Monday

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 June 2014

Recovering on Monday

It's a beautiful sunny day in Launceston, I can see the autumn leaves in the park at St. John's, and can hear the regular croaking call of a crow, against the background of gentle traffic noise.

My tummy is still sore from the surgery, but I was able to sit myself up in bed today(very slowly), had a shower, did two laps of the hallway, and have been sitting in my armchair since then, passing the time by meditating with a relaxation soundtrack on in the background.

I'm allowed to progress up from a clear fluids diet, now that gas is moving around down there, and the surgeon says I'll be in for another 2-3 days, once the pain has settled. I'm feeling very blessed and grateful that they were able to correct my twisted bowel without removing any, and that there weren't any complications.

Mum lost over 12 inches of bowel when hers was twisted from adhesions over 10 years ago. Another cousin lost his father to the condition. It's not just incredibly painful, it's potentially lethal as well.

I just need to sleep on my back, or on my left side, to encourage mine to stay in place. The stitches will appreciate it if I do

I have no idea what I've done to deserve all these health problems. I'm not going to spend valuable time wondering why, or feeling guilty for things I could have done differently. I'm going to take myself and my IV fluids very gingerly to the bathroom, and then I'm going to do two more careful laps of the corridor. Onwards and upwards!