I slept all day yesterday, and most of the day before. Today, I stayed awake all day, didn't feel the need to sleep. High five to myself! I missed out on my walk today, but had a lovely long walk with Charmaine and Brenton in Invermay yesterday, and I walked quite a lot on Monday. I thought I was having a massage at 930, so I walked over to the cancer support centre in the morning, only to find the appointment was for next week. I'd written the wrong time in my diary and phone.. So I walked back to the hospital and reactivated my Outpatient Rehab referral - my legs feel like The Wrong Trousers from the Wallace and Grommit movie, only they don't allow me to walk up walls and across ceilings, and they're not particularly strong. Probably lucky, as all that hanging upside down would probably make me dizzy.
I've been quiet on the blog lately because of the need to catch up on sleep, my attempts to sort through the pile of papers on our dining table, the never-ending laundry, and my attempts to meditate and say my mantras (which often ends in sleeping). The boys are sleeping in their beds most nights now, which is helping me to sleep more deeply, and taking Panadol Osteo is helping to suppress the bone aches from the GCSF injections (still every other day).
Time passes slowly and quickly while on leave like this. I've finally realised how many hours I waste reading various interesting posts on Facebook, and I'm working of being more mindful of how much time I spend reading different news feeds. I'm a compulsive reader, and the internet makes it easy to read all day, but not necessarily deeply.
Ben says I've been a bit morbid lately - I dreamt that I was dead the other day, and it wasn't too unpleasant. It was one of those dreams where you wake up and become aware that you're sleeping, but I felt I was floating above my body and that I was dead. I felt still, calm, and peaceful. I think I'm starting to accept the inevitability of my demise, and have stopped worrying about it (though I haven't stopped being worried about changes in symptoms, if they occur). Death will happen when it happens, and hopefully not too soon for me. Ben's family suffered an unexpected loss yesterday, with the death of a 32 year-old who went to work in the Indian town of Poona, felt unwell, and died of a suspected heart attack in the ambulance on the way to hospital. Their shock and grief of his family must be overwhelming. I met Raoul in 1998, he was a lovely young man, who should be living a long life with his family, not sleeping in his grave.
I feel grateful for this opportunity to come to terms with my own mortality - it's a fact of life that we often avoid confronting. Quotes from The Tibetan Book of Living and Dying by Sogyal Rinpoche keep popping up in my Facebook feed, they all seem particularly pertinent. I'm going to get ours off the bookshelf and read it, I didn't finish it when I first delved into it in the late 1990s.
There is so much that I want to write about, stories for my boys of my wonderful childhood, stories about my family, insights I've gained over the past year… but taking my medications, supplements, and dietary regime can take a few hours each day. Exercise and rest are important too, so there's not much time for writing. Until I extract myself from my reading addition. A friend recently deleted Facebook from her phone - a drastic step, but one I'm considering.
Being aware of my reading addition, I used the home phone to book our hire cars for our holiday (one in Melbourne, one for Queensland), and texted some friends in Melbourne to let them know we'll be there from the 17th to the 20th. We'll be staying in a Quest apartment in Kew from Good Friday to Sunday, and I've invited people to drop in to visit, hoping that will minimise our travel time and maximise the number of people we can see. It will be a little like holding court, which seems appropriate in this new era of Knights and Dames.
If you didn't get my text and would like to drop in while we're in Melbourne, please email me and let me know. I'm hoping that my excitement at seeing people will keep me awake during the day, and that I'll sleep well each night.
Overall, I'm feeling calm and content at the moment, and hope that the Valcyte and all the supplements I'm taking will stop any more glial cells from mutating and becoming cancerous. There's so much to do!
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.
