1230am, Saturday 16th January. Went to bed around 9pm, woke with a headache. Just took another Panadol Oteo (prolonged release paracetmol) and an Endone (an opiate), 6 hours after I'd taken the last ones. The pain has been pretty manageable on these tablets if I take them every 6 to 8 hours. It is uncomfortable to sleep with the right side of my head down, so I don't. I'm getting a little sick of sleeping on my left side to keep the pressure off the right side of my head, but I've been managing to sleep on my back most of the time.
Fatigue isn't a big issue this time around. Having had two prior craniotomies, I know I need to sleep when I can and to keep physcially active. That means I've been sleeping when I can during the day, and trying get some kind of a walk in a couple of times a day. I did 12 minutes on the treadmill at a comfortable 4.5km/hr with a 5degree incline this evening, I'll see if I can increase that interval to 36 minutes twice tomorrow. It felt safer and more steady to be walking on the treadmill, with the handles available if I needed support, and without the risk of falling or being unsteady that has bothered me since before I had surgery. I was getting my core stregnth back before the last operation on January 6th, but I was increasingly worried about falling over in the weeks before the scan on January 2nd, and I've been feeling a little unsteady since.
I need to remember to load up on at least a couple of glasses of water each time I have a drink, I suspect I'm a little dehydrated, but I know I tend to avoid drinking much in the evenings because I hate waking with a full bladder. This is also affecting how much I drink during the day, since I'm napping so much, so I need to take 2-3 glasses of water each time I have my medications or herbal supplements. Sounds like a boring new years' resolution, but it can't do any harm. I don't need to get constipated again, and they say that drinking enough water helps the body to flush away toxins. I have no idea why I've had a third brain tumour, or why I got brain tumours on top of having breast cancer. My whole medical history since January 2013 seems like an insult on an otherwise good life, but reflection teaches me that I didn't do things as well as I'd like to pretend, and that a little bit of reform will not do any harm.
I've realised that I inherited a wonderful sense of optimism and an ability to take pleasure in the simple pleasures of life from my parents and their families. Growing up in Tasmania was an endless lifetime of drives to visit loving aunts, uncles, and cousins, who welcomed us with great varieties and quantities of delicious foods. Every visit involved home-grown or home-cooked food which was generously provided to two little girls, whose father didn't make them restrain their indulgence in the wonderful scones, cream-cakes, or chocolates that were offered. We were part of the generation who were taught to eat everything on our plates, and were praised for eating well. In hindsight, I often ate beyond the point of satiation, and wasn't very good at knowing when I'd had enough to eat. This means that I ate excessively as a child, and came from a family that scoffed at the idea that too much sugary food was bad for you. Lucky for us that diabetes has never been a problem in the family, but my readings on diet and cancer suggest that everyone should find health benefits in following a diet low in sugars and refined foods. I won't go into the LCHF way of eating here, I think I've covered it before, but I'm redirecting my efforts into following it after the most recent brain surgery.
So, as a quick status update - I've been home since monday the 14th of January, sleeping most of the day each day, but managing to get at least a short walk in each day, and to cook a range of simple, healthy, and tasty meals. The tumour was found on the 2nd, we drove to Hobart on the 6th, it was removed on the 7th, the postoperative MRI on the 8th showed no residual tumour in the operative bed, and no preoperative infarct (blood), so the surgeon was happy with his work. The histopathology came back on the 9th, and showed another GBM, but the surgeon felt that the Gliolan fluorescing dye didn't dramatically increase the amount of tumour removed when compared with what the scans showed and that he could see with the naked eye. This suggests to me that the tumour was fairly encapsulated and not invading surrounding brain tissue, which has got to be a good thing.
We saw the radiation oncologist on the 15th, he will consult with a near-oncologist in Melbourne about the best course of action for my radiological treatment for the most recent tumour. Going on past experience, this means my radiation will start in about 6 weeks after the surgery, as they like to give the brain and bones time to heal. My previous bad response to the chemotherapy drug used for GBMs, which resulted in neutropenia, thrombocytopenia, and then pancytopenia which lasted for several weeks even on daily injections of GCSF, means that I may not get the chemotherapy again.
This makes me sigh.
As I said before, I feel like one of Dad's dear aunts, genteel and elegant women who presented a veneer of politeness and grace, who would have been discretely flustered or out off by the display of impolite or churlish behaviour by others. My ongoing health dramas are unexpected and somehow improper in the mental template I had for my life. I wasn't supposed to go through all this, but I'm glad to have discovered the source of endless optimism and enjoyment of life that has fuelled me until now. Time to embrace it in some dreams, and write a little more in the morning.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
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.
