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, 18 June 2013

One more cycle to go

Tuesday 18th June, 918pm

I have my last cycle of chemo tomorrow, something I'm anticipating with a mixture of relief and trepidation. 

I have been feeling exhausted for most of this cycle, with only a few odd days of feeling anything like normal. It's as if some alien device has drained all the energy from my body, or as if I'd been prematurely aged. I have energy and fitness of an unfit octogenarian, and it's a struggle to make it up the gentle steps in our park and to walk up our front path. I had a blissful sleep this afternoon, one that I didn't want to wake up from, only I needed to get dinner ready. It was one of our more healthy meals in recent weeks: chicken korma (from last friday's freezer spree) carrots, peas, corn, and fresh bread. Followed by watermelon. There's been too much reliance on takeaways and party pies lately, but I just haven't had the energy to prepare fresh food.

At least I still seem to have my brain. It's the one part of me that isn't completely kaput. I can't multitask any more, I do fatigue easily, but I can still read, understand, and synthesize a wide variety of texts, and I haven't lost my curiosity, so that's good. There is some research suggesting a loss of white matter volume in women after chemotherapy for breast cancer, but I'm hoping it won't affect me, or if it does, that there was a little spare white matter in this big head of mine...

As chemo comes to an end, I'm feeling grateful for all the things my body used to do that I took for granted. My eyelashes used to prevent the shower water from getting into my eyes. My hair used to keep my head and neck toasty warm. My legs used to be able to walk quickly and strongly for hours. My arms used to allow me to sleep on my side without pain. My skin never used to dry out quickly in response to dehydration. My appetite rarely deserted me. My taste buds delighted in a wide variety of foods. My gut was never sluggish in processing things. My left breast managed to keep a 7cm stage2 invasive ductal carcinoma from invading my lymph nodes or the rest of my body. It's been a pretty good body, even though I haven't looked after it as well as I should have, out of misplaced self-loathing for not having great legs, for being chubby as a child, for not being one of the "pretty" girls at school, for the teasing about my imperfect body in boarding school (surprising there weren't more eating disorders there). I am determined to take better care of my body from now onwards, for as long as my soul needs it for this earthly incarnation. Without it, I'd miss out on this wonderful life and all the dear people in this beautiful world.

I had my radiation planning session yesterday. Had to strip off my upper clothes and put on a lovely gown that opened at the front, so that I could lie in position, arms over head, on a CT scanned for them to mark my chest and take CTs to check where my heart and lungs were in relation to the mastectomy. They used a wax pencil to mark the midline, around my scar, and other areas on  my chest and side. Then I got my first and last tattoos, five single ink dots, two in the midline, three on the side. The one over my sternum stung a lot, and I was reminded of the heavily tattooed nurse who told me that tattoos hurt most over bony areas. The tatt over the diaphragm hurt a little, one under my arm hurt enough to make me kick my leg like a dog having its back scratched (but not so pleasurably!), but the last two, near my mastectomy scar on the side, hardy hurt at all. The advantages of sensory loss!

My medical oncologist was concerned that I'd become neutropenic so quickly after the last dose of chemo. He asked the infectious diseases consultant if I should take prophylactic antibiotics, and they said no. So I just need to be ready to go in to hospital on the weekend. Again.

 I've lost count of my admissions. Was it three in the first cycle, none in the second, and one in each of the subsequent cycles? So at least 6 admissions, with two episodes of febrile neutropenia, and missing out on David's birthday and mothers day. It's been disappointing, but my prognosis is good. I had an early tumour, it hadn't spread, the surgical margins were good, and the only reason I'm having radiotherapy in 4 weeks time is because of the size of it. The chemo should have killed any cancer cells that escaped to other parts of my body, and the radiation will blast any cells that stayed in the general location. Then I'll be on Tamoxifen for at least 10 years, to further suppress any possible residual cancer cells.

I was reading a breast cancer newsletter tonight, and am still in two minds about having a reconstruction. I'm told that the recurrence risk for the second breast is low, but I don't want to have to live with that fear for the rest of my life. Having chemotherapy once has been plenty for me. If I have the other breast removed, but not reconstructed, then the two sides might not heal with an equal profile, so it might be better to get a bilateral reconstruction, though I don't like the idea of further surgery and recovery, or the need to have them replaced every 8-10 years. 

There was a story in the newsletter about a woman who had breast cancer who refused to have chemotherapy because she hadn't been ill, and didn't want to be ill from chemo. She said the tumour had been removed, and that was all the treatment she wanted. I hope for her sake that it was a low-grade tumour that was caught early. Having seen relatives die horribly from cancer that spread after surgery but no chemotherapy, I worry about the ability of cancer cells to spread to other parts of the body. In my case, the chance of recurrence after five years with no chemo was estimated to by 50%, or one in two.  Not good odds at all. Having the chemo I've had reduces the recurrence risk to 5%. One in twenty isn't great, but it's much, much better.

So think of me these next three weeks, I could really do with some cards to cheer me up. I'm hopeless at emails at present, but if you don't mind not getting a response, they're fine. Postal address is PO Box 93, Launceston TAS 7250, email: fiona.bardenhagen@gmail.com

I was pretty down at stages during this last cycle, though I found it good to  acknowledge my feelings, rather then suppressing them in an unhealthy attempt to stay positive at all costs. It's natural to feel angry, upset, and miserable when life serves you lemons. And while lemonade tastes great, it takes effort and a lot of sugar to turn the lemons into lemonade.  

Now to sleep, sweet dreams everyone.


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