Thursday 11th June 456 pm
just a quick post to say how I'm feeling. I have a few drafts waiting to publish from the last couple of weeks, but I can't work out how to get to them just now.
I'm propped up in bed to write this. Ben's gone to get David from his hockey practice at 5pm, Nathaniel is sitting in the family room watching tv. Ben said he'll buy some takeaway food for dinner. I've been doing reasonably well preparing our evening meals the last couple of weeks, but I'm utterly exhausted today, despite spending most of the day in bed asleep, and despite sleeping reasonably well last night.
I thought I'd been affected by the virus that's been going around, causing reduced appetite and diarrhoea, but I haven't been feeling achy, just drained of energy, and I'm finding it hard to concentrate on things that used to be straightforward. For example, we got a letter from the bank saying that an online payment to the chemist had not been processed because I'd given the wrong account number. I could see on internet banking that the payment hadn't gone through. Then a letter came from the chemist saying that we owed them over $11,000, so I looked at our internet banking, and it seemed that some of the payments I thought I'd made hadn't gone through. Ben went to the bank and got a printout of our statement, and it seems that a number of payments to the chemist hadn't been successful. A letter from the chemist also came, saying we owed them over $11,000, so I've written a cheque which we've delivered today, and I've transferred the money to our cheque account.
The Avastin cost $3477 each fortnight, and I've had 5 out of 6 treatments so far, so I'm glad my income protection insurance is still coming through each month, and that we were well-insured in other ways. We were told that 6 cycles of Avastin usually costs about $20,000. It's not covered by the pharmaceutical benefits scheme here in Australia, but my private health insurance may give us something. It would be very hard to deal with the cost of treatment if I hadn't received a payout for trauma insurance when I was first diagnosed with cancer, and it would be even harder if I didn't have the income protection insurance. Ben has recently stopped working at the local hospital in preparation for our move to Melbourne, which is being done primarily to benefit my health, as there is a greater number and range of treatments available in Melbourne, and if I need to have brain surgery again (god forbid), or other treatments, it means that the boys will be able to keep attending school rather than being dragged around with us. Ben will be able to start part-time private practice in Melbourne almost as soon as we get there, where we plan to live in his sister's vacant but furnished house, at least for the short term. I don't really want to move back to melbourne, I like living here, but we need to do the best for my health and ongoing wellbeing, and I have lots of old and dear friends in melbourne who have kept in touch since we've been here.
Oh dear, I don't want to put too much personal information up here. So a little less about the move, and more about how I'm feeling.
I spoke to one of my oncologists on the phone today and told him I've been feeling increasingly low in energy, and am finding it hard to focus my mental energy on things. I've been sleeping a lot in the day, each day for the last couple of weeks, and I'm worried that there may be new trouble ahead. My right hand was twitching a little last night, but there aren't any new neurological signs that I'm aware of. He suggested I take 4mg of dexamethasone this evening, and another 4 in the morning, each morning for the next few days, as the fatigue may be related to the stereotaxic radiosurgery I had recently. I hope he's right. I don't like feeling like this, and I keep telling Ben I'm not doing it on purpose. He has to fly interstate in the morning for a peer review session tomorrow, and won't be back until Saturday. I'm trying to call my mother to see if she can help me until he returns. I'd rather not be alone when I feel at such a low ebb. Even now, having Nathaniel in the family room while I sit up in bed typing this, I'd rather have Ben around for company, because I really feel completely overwhelmed and drained of energy. This isn't me. I used to like to sleep in as a treat in my hedonistic days before I had children. It's not something I've done wilfully since then. I'd far prefer to get out and do things in the garden, walk around the neighborhood, or catch up with friends and acquaintances. It's just been so hard to summon the energy to do that lately.
I had a period of feeling energised and refreshed for a few days after the first session of stereotaxic radio surgery, followed by an unscheduled session of Reiki from a friend in Melbourne, but that feeling seems like a dream, or a distant memory. The urge to rest keeps building up in me. Ben will be home with David soon, and I'm hoping that a quick nap will help me summon some energy to do things around the home tonight.
This is all a little bit scary, but I'm not allowing myself to succumb to fear or my imagination. I'll post this, turn of the laptop, lie down and rest, until Ben and David get home.
Love and thanks to all of you for your ongoing support
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.
