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.


Monday, 25 November 2013

Two zaps to go

Sunday 550 pm, sorry it's been a while, I've had a very sleepy week. My neutrophils finally returned to normal on Thursday, and I've managed to get through this neutropenic episode without getting an infection, or at least a temperature that would have seen me back in Emergency. My temp did get to 37.5 at one stage, but went back down after I packed a bag just in case.

A few of you have written lovely long emails, which I haven't had the energy to respond to - know that it's wonderful to hear from you and your thoughtful responses to my blog, it's good to know who's out there. In response to one question, the fatigue has been pervasive and different to what I felt during my breast cancer treatment. I didn't need to sleep during the day so much then, except when I was in hospital with neutropenia, when a brief morning and afternoon nap sufficed. Since the initial exhilaration of having survived surgery for two brain tumours and the corticosteroid-induced sleeplessness and high energy of the first month after sugary, I've had waves of fatigue come over me, which I've sometimes foolishly resisted, and later paid the price with increased irritability or fatigue the next day. I find it very hard to sit or lie still and do nothing, apart from compulsive reading, which isn't really resting my mind.  I don't watch much television because it is inane rubbish during the day, and I've started to take great delight in muttering comments back to the morning presenters while I wait for my treatment in the Holman Clinic (mutters facilitated by the presence of my cousin Caroline, who helps it become a very funny experience).  I'm loving the Dragon Riders of Berk series on the ABC, and am very excited to find that there are two series on YouTube, so I guess if I get the right kind of programs (funny fantasy or science fiction), I can lie down and watch TV to rest.

There's still the problem of wanting to de-clutter the house, and not having enough energy to do it. I am motivated to do it because I feel a strong sense of stagnant energy from the accumulated clutter in our house (books, papers, boxes in particular). When we visited my cousin's yacht in Hobart, I could see the appeal of going away with only the things you absolutely needed, as there is no room on a yacht for extra things. If I could wave a magic wand and make everything that we don't need disappear, I'd be very happy (thanks, CL, for that idea). From reading my old Feng Shui books, if improving the flow of energy can make a difference to people's health and relationships, then I'm very keen to do it. I know that Feng Shui may sound like superstitious nonsense to some, but I've been interested in it for years as a lot of the principles make intuitive sense to me. Like having a bright and welcoming entry to your home, and not having accumulating unused or broken things, or clutter (are you seeing a theme here?).

I was stressing about the lack of progress on decluttering yesterday, and Caroline said something very wise and helpful: "There's no hurry. You've got all the time in the world to do it. Once your treatment is over, you'll start to get more energy back, and you'll be able to do a little bit more each day." Ben managed to clear out a lot of clutter from our back hallway (shoes, bags) today, Caroline cleared off the dining-room table (a magnet for papers) and Ben found a blue birdbath that looks wonderful in the garden outside our kitchen.

Caroline knows me so well, she sensed that I fear there is some deadline to do all this, that tidying up the house and getting my affairs into order is an important thing to do. It's good to have her remind me that the most important thing I can do is look after myself, get the rest that I need, and not feel annoyed with myself for not having the energy to do the amount that I used to be able to do. I have all the time in the world. I am going to get through this. 

If anyone has looked up GBMs and been a bit put off by all the negative data, here's a great website that should give you hope.
http://www.sarahmamalai.com/
Sarah seems like a soul-sister to me, and I hope she's continuing to live a recurrence-free life. The fact that the webpage is copyrighted 2013 gives me hope that she is.

As for how I'm faring, I'm feeling tired but rested after a pyjama day at home. It's been cold and blustery all day, the kind of day I've always loved for staying inside, reading, pottering around, relaxing. Today was a little different to those kind of days from my childhood, given that I slept from 1030 to 230 last night, found it hard to go back to sleep because my head was stinging from the cold (despite merino beanie capped by crocheted beanie topped by yoga pants grabbed in the dark, a very attractive look), my shoulders were aching,  there's a niggling discomfort in one of my upper teeth that won't go away, and I couldn't remember when I last had panadol. I think I got back to sleep from 330-530, then the birds and David woke me and we got up to watch the 50th anniversary special of Doctor Who (loved it!). I slept again from 1030 to 130, a deep sleep where my body felt like a heavy log, I was having dreams, and the sound of the boys laughing as they played was a welcome music in the background. I would have kept sleeping, but for the irritating need to go to the loo, and the understanding that I should eat some lunch and take my midday medications.

The boys played beautifully today, lots of laughing, no fighting. The routines and consequences that I've been putting in place are working well - for example, they can't play an electronic game until they've showered and dressed in the morning. They can only play for 30 minutes in the morning or afternoon; if they don't stop before or at the allocated time, they lose playtime in the next play period; they need to read or do chores before they play in the afternoon. Whining, pleading, yelling, and other unpleasant behaviours intended to help them get their own way get counted using the 1-2-3-Magic system, which is resulting in impressive results.

I have much more to say in my head, but need to rest now. Take care, and keep in touch.X


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