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

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, 7 May 2014

Twists and turns

Writing on my iPhone from a surprisingly cosy bed in DEM. I didn't expect to be in here again, my bloods were looking good when I saw the haematologist on Tuesday, and apart from a tummy ache and mild constipation that I attributed to a change of diet on our two-week sojourn in Queensland, I was feeling well. My strength had improved from walking to our rooms up the hill on Fraser Island, and I had a great season with the Physio on Tuesday morning. I suppose that spending the day in bed with a heat pack on my tummy on Monday wasn't normal, but constipation can be painful, and it was taking a while for the lactulosee to work. Vomiting up my dinner of vege juice after taking a big glass of water on Tuesday night wasn't pleasant, and I thought I should come in to hospital, but my oncologist said it was unlikely I had a bowe obstruction.

My intuition was right, again.

The pain kept worsening on Tuesday, and did not improve despite taking two baths, two showers, Panadol, clonazepam, and trying to sleep in the spare bed. I couldn't lie stil, my tummy was full of crampy, stabbing pains, and I'd only passed gas in the last two days. I ended up taking a taxi to DEM at 130 on Wednesday morning. An X-Ray showed some sort of obstruction, which appeared to be a pseudo obstruction or functional obstruction on CT. So I'm having a colonoscopy in the morning, to check.

I've only been allowed to sip water since I've been in here, but I'm on IV fluids, and my tummy still hurts so much at times that I don't feel hungry. I've had two doses of morphine for pain relief, which have helped reduce the pain from 8-9 to 2-3 /10, but the pain keeps building when I wake up. Morphine also helps me pass the time in surprisingly deep sleep, though it also alters time perception- I thought it was morning when I woke last night, and asked them when I was having the scope. The lights were on and the staff were so noisy, I was sure it was morning.

They gave me an enema yesterday, which wasn't too unpleasant, and seems to have cleared up any blockages down under. But my gut still hurts. They say these things aren't infrequent, and can resolve by themselves. Itvseems the bowel wall can get weak and constricted. Bloody ouchy though.

The pain, the hour (1235 am), and the iPhone means that I'll be economical with this post. I was writing lots in my head while we were on holiday, but enjoying watching the boys cavort in the pool seemed more important than being immersed in writing.

Time to more morphine, if they'll give it to me. Pain 5-6/10 and rising.