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.


Friday, 30 May 2014

Recovering from the laparotomy

Symptoms recurred Thursday morning. Surgeons discussed me at their weekly meeting. Agreed on a laparotomy. Came into st vs private on Thursday afternoon for surgery on Friday.
Friday evening (Facebook status update, was rather challenging to write, could barely read what I was writing)
BAck in room. Sipping water. Tummy very ΓΏ sore. Feeling dopey, very sore. BP fine.-temp 36.1. Long abdo incision to add to my scars. Hard to talk from dey mouth., good nghts and lovie to all. Appendix gibrc (I may have meant gone, but I don't remember being told that ???!)
Saturday morning fb status update
Oh sweet Jeebers! I fee like my tummy has been skewered. Can hardly move from side to side, the PCA pump is locked for 5- minute doses so I don't overdose, the pressure pump stockings on my calves are good, it hurts my wound to move my legs. Glad I've got a Cather in, getting out of bed would be agony. So glad the kids can't see me like this. I'm going to switch off and spend time with calm thought and happy memories 
Saturday afternoon
My surgeon said that my bowel was twisted on itself at the level of the caecum ( on the right hand side, just where the large bowel begins). This is why food and fluid couldn't get through, and why I was vomiting whenever I drank more than a small amout of water. He described it as having a twisted shirt sleeve- you can't push your arm through. So he untwisted it, and put in some stitches to help anchor it in place. He's removed my appendix because he saidvit would be impossible to access from behind the tethered caecum  if something went wrong with it in the future.
He said  I need to lie still for a day or so while my wounds heal, and only take thin fluids until gas starts moving. I need to lean to my right side when lying down so that gravity takes my bowel in the correct direction, rather than letting it twist on itself again by leaning on my left side (which I'd been doing to protect the infusaport on the right). There was no infection, inflammation, cancer, or necrosis, and he didn't have to remove any of the bowel itself. I have a 10-20 cm vertical scar starting just above the belly button, and now that I'm watching the clock, the PCA is starting to be effective (PCA = patient-controlled analgesia). They've still go me on IV fluids, and IV Panadol has helped too. I will be in here for three or four days, taking it quietly. Not really feeling up for visitors at present, though it was good to see the boys today, they came and held my hands, then sat quietly reading their books.

I am going to be a model of good health from now on.

Time for a sleep.

Sending love and best wishes to all of you. Enjoy the health and independence that we tend to take for granted
Love
Fiona
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