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, 25 May 2014

Second admission for severe abdo pain.

Tuesday 20th may
Slept poorly due to abdominal cramping and pain, vomited twice overnight. Just can't seem to keep water down. Ben came home to check on me after taking the boys to school. He ended up taking me to emergency, where I was given morphine, X-rays, and fluids. My infusaport was accessed, but not successfully- they had to reneedle it. I was too tired and preoccupied but the tummy pain to notice.
Wednesday 21st may
Another night in DEM after another night of severe abdo pain and vomiting up water as soon as I drink it. Rapid but not recommended way to lose weight. X-ray's normal, doctors mystified, but white cell count is elevated for the first time in ages. It's good to have neutrophils. And morphine really kicked the pain. At home, both boys have finished all their homework early (first time ever) and Ben's doing a marvellous job. Cubicle 10 in the LGH DEM is pretty good too, nice happy nurses station opposite, with wonderful nurses. It would just be nice to know what the problem is.
Thursday
Haven't eaten since Tuesday morning. Waiting for an endoscopy. And waiting. At least morphine eliminates the pain.
Friday
Looks like I now have a drug allergy: morphine. It caused localised redness and a small welt last night. Today, it caused redness and lots of welts, and a feeling of tightness in my chest. The surgical registrar came running, worried about anaphylaxis. I Took ventolin, they've got me on oxygen, ECG okay, need to have blood tests. This is all so surreal, just wish I was completely well. And I'm definitely having a gastroscopy, not a laparoscopy, some time this afternoon. Time for some intense meditation or sleep. After they stop tending to the bed bound woman with pressure sores in the bed next door. She's not happy.

Saturday morning. The scope didn't get scheduled yesterday, there was some dispute over a gastroscopy vs a laparotomy. CT abdo last night was clear, despite awful cramping, stabbing pains that had me writhing in agony. Buscopan helped settle the cramping, endone, tramadol, and Panadol helped with the pain, which is starting again now that I'm awake. I'll ask about pethedine today. Was too uncomfortable to be very assertive. I'm Hoping to have a shower and a walk this afternoon. Sick of being in bed all the time, but when even sipping water causes cramps, and drinking quickly makes me vomit, I don't feel too brave about walking too far. Did I say they don't give pethedine often? I can't remember why.

Saturday evening:Panadol, endone. Buscopan, and tramadol are keeping the pain down, mostly. Ate some overcooked carrots, two fruits, and one piece of dry tinned tuna for lunch. It's hard to start eating again after 5days with  only two serves of custard, one tapioca pudding, and a cup of salty broth. Gastroscopy will happen on Monday, if that shows nothing, then it will be followed with laparoscopy. While I wait, I'm meditating with my eyes closed to block out the distractions, and often fall asleep. Until someone wakes me to do obs, change my fluids, or give me pain relief. Hoping to have a shower and a walk this afternoon. Sick of being in bed all the time, but when even sipping water causes cramps, and drinking quickly makes me vomit, I don't feel too brave about walking too far. Did I say they don't give pethedine often? I can't remember why.

Sunday
Gastroenterology have ordered 
Over a dozen blood tests, half of which even the nurses haven't heard of. I'm so glad for my infusaport, it makes all the transfusions and blood tests painless. I'm sick of being in a shared ward, people leaving their TVs on, volume up, while they're asleep. Nurses coming in to take other people's obs throughout the night, and speaking loudly all the time. It makes it hard to get a decent sleep, even without the tummy pain, and my abdomen becoming distended like a helium balloon last night. There's lots of gas in there, and it doesn't want to come out. 
I hope the blood tests show something, my liver function tests have been getting worse, and they don't know why- I haven't had any alcohol in over a year, so it might be one of my medications... I'm glad I asked for a gastro consult, at least they look at the big picture, where the surgeons just look for a surgical solution. Gastroscopy should be tomorrow afternoon. Fingers crossed

Sunday evening 
Ben's bringing the boys to visit me each day, it lovely to see them, but I don't like them visiting for too long. I don't feel like talking, not that I have much to say. It's good to hear what they've been doing, until they start telling tales on each other. I feel bad for being impatient and snappy with them- it's not me, it's the pain and discomfort, and not knowing what is wrong. it makes me withdraw and save my energy, and end up looking and acting grumpy. 
God I hope I get over this soon, and that it never comes back. All I can do is keep meditating on being well, and being surrounded by healing love. And sleeping when I can
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