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.


Tuesday, 17 September 2013

Staples out tonight

A restful day today, temazepam helped me sleep well last night and I woke feeling refreshed.

I had a wonderful roommate from Bruny Island, who provided a shoulder to cry on, a reassuring person to talk to, and a source of signatures for my will, power of attorney, and guardianship orders. Most of all, she was a delightful person, and it was wonderful to meet someone new. We're now Facebook friends, and we're looking forward to visiting her and her husband once this is all over.

I had a couple of rests, not full naps, but relaxing enough. I even did a little yoga. I felt nauseous in the morning, but some odansetron settled that down, and I was able to walk two strong laps of the long hallway tonight with Ben, while the boys watched the Simpsons.

I'm glad I came in here yesterday, I'm feeling rested and well tonight, and quite fine about tomorrow.

I'll be having breakfast at 7, then going down to MRI 815 to get the fiduciaries marked for surgery, which will take place around 2pm. 
Fiduciaries? http://en.m.wikipedia.org/wiki/Fiducial_marker

I have the same bow-tie wearing anesthetist as before, so I complemented him on his lovely manner, he's the nicest person to have ever put me to sleep. I also told him I don't like being woken up in recovery, I'd rather sleep, and that PCA pumps were a nuisance because I have to keep pressing the button. He took my mock grumbles well, and I'm looking forward to seeing him again tomorrow. I'll get my Valium and maxalon around 1pm, and hopefully be getting woken in recovery at around 5pm. At least this time I'll know to expect an oxygen mask, and all the hardware and lines on my hand, arm, and jugular vein. I commented that it will look like I've been bitten by a vampire. He said the double puncture wounds should be healed in time for Halloween, sadly. 

Oh, yippee, I get to practice bedpan technique again! What joy! (better than the uncomfortable tug of the necessary catheter). I hope I recover as well from the second surgery.

I had my staples removed tonight. Only the first one hurt, it was a little bent. The other 14 came out smoothly, they were just like little paper staples. I'm very impressed with the scar, I've never seen a straight one before. My lovely nurse took the photos. 

Only other news - I'm getting to drink a very expensive cocktail at about 10 am tomorrow, so that my surgeon can resect as much tumour as possible. It's called Gliolan, and is being flown down from Melbourne tonight. 

You can read about it at these links:

http://www.btaa.org.au/GliolanFAQ1.htm

http://www.specialisedtherapeutics.com.au/index.php?q=first-australian-patients-treated-with-new-brain-tumour-drug-gliolan.html

Would we have asked for Gliolan for the first surgery, if we'd known about it? I don't know. We didn't know about it,  and everyone was surprised that the big tumour was a glioma. Well, maybe not me. I did my reading and thought it didn't look like an abscess, the capsule was thick and irregular, there were differing levels of intensities within it, and it just looked bad in so many ways. I'll post images of the tumour when I can, and those of you who are familiar with such things will understand why I was worried about the tumour grade. I didn't want to scare you, I felt bad that I already had.

I'm so glad we have private health insurance, and that a combination of income protection insurance and trauma insurance means that we can afford to use this substance. I haven't had many out of pocket expenses this year, time to splurge!  If gliolan improves resection of tumors and therefore outcomes, it really should be covered by Medicare. GBMs are very rare, mighty deadly brain tumours, and spending $4000 to improve resection and outcomes would seem worth it. 

My surgeon feels he got all of the first, encapsulated, tumour out, and also the small tumour adjacent to it. I suppose he will be able to use Gliolan if that tumour grows back, to improve the resection. Let's hope he won't have to.

I won't start to wonder how many times I'll have neurosurgery. Serves me right for thinking it was so fascinating.




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