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, 2 July 2013

coming out the other side (in defence of chemo)

Tuesday 2 July 2013, 927pm

I'm starting to feel better. Not sure how I know this, as I'm still exhausted, I have to partially pull myself up the stairs, and my gut is grumbling obscenely. I've gained 8 kg in the past 5 months, and my new jeans are tight. I barely slept last night, my head was cold, my legs too hot, and I had to keep running to the loo every 60-90 minutes thanks to the lactulose, which apparently ferments in the gut and causes bloating and gas. I tried sleeping on the couch from 430 to 530, but ended up having a shower and preparing the boys' lunches, sleep has eluded me all day. But I'm still feeling better - the end of chemo is in sight.

So yes, I should be turning out the  light and sleeping now, but I want to make my eyes so tired that I can't keep them open, and I need to write in defence of chemo, now that I'm emerging from 19 weeks of treatment.

My biggest fear in writing this blog has been that it will make people more afraid of cancer, that it might deter people from seeking a diagnosis and help because chemo has been such an ordeal for me. I have had some revoltingly low times over the last five months, but it's all temporary, and the end goal - of being cancer-free and able to see my children grow up and have children of their own, and to contribute to the world in some meaningful way - is worth it

Breast cancer affects one in eight women over their lifetime. If it's caught early, the prognosis is very good. Even though I had a whopper of a tumour, at 7 cm, it still hadn't spread to my lymph nodes or anywhere else in my body, so my prognosis is good. Or, as my radiation oncologist said this evening, I've whipped it.

If breast cancer is detected earlier, people can be treated with a lumpectomy and different kinds of chemotherapy or radiotherapy alone. I know people with more aggressive tumours than mine who have coped better with treatment. The nurses in the Holman Clinic tell me I've just been very unlucky, that other people have sailed through my treatment schedule with minimal complications and sidecrffects. I suspect that I may have had a more torrid time than some because I came into this year feeling burnt out after the death of my father from dementia early last year, and the loss of my 51 year-old cousin to cervical cancer just before the neuropsychology conference that I organised. Not to mention the stress of belonging to the 'sandwich generation' that has involved caring for my 89 year-old mother-in-law from 2005 to late last year while simultaneously trying to raise two young boys and lobbying for better access for neuropsychological services for people with brain disorders. I feel tired just thinking of that.

So, I haven't had the best of times, but my cancer should be eliminated once all of this treatment is over.

Having seen a few people dying of cancer, I think going through chemotherapy is a far better option. It's a little like having a baby - while it might be nice to have a natural labour with minimal interventions, the important thing is having a healthy child at the end of it (Thanks, Caroline, for the analogy). So while there are all kinds of alternative to chemotherapy touted on the web, and conspiracy theories to suggest that pharmaceutical companies are suppressing evidence that natural therapies are better than chemo, I'd rather have gone through the last five months than put my faith in vegetable juices, frozen lemons, yoghurt and flaxseed oil, or any of the other non-chemo "cures" that are out there. I don't mind having them in addition to conventional therapies, but with my longevity on the line, I'm not willing to gamble and lose. I accept that death is going to happen to all of us, but I'm going to do my best to not die of cancer. There's still so much I want to do, and I want to be around for my wonderful boys.

I'm not satisfied with this post - I still worry that people might be deterred by my experience. 

I hope that everyone who reads this will look after their health - eat, sleep, exercise, drink, socialise, think, and love well. And that you'll all ask questions and seek advice if you're worried about your health, so that any problems can be detected early to give you the best possible outcome.

Sometimes, of course, shite happens. I hope that sharing my experience will help people to keep going, to not give up, even when it seems things couldn't possibly get worse. These last few months have shown me that nothing is permanent, and that impermanence doesn't matter. Love for and from family and friends, and kindness from unexpected people, has helped sustain me and will make me stronger in the years ahead. It's the most powerful force in the universe, and we all need to cultivate it, every day.

(oh God, I hope that doesn't sound like a Hallmark card - forgive me!)

Next up - 28 radiation treatments, and 10 years of tamoxifen. And I think I might get me some perky new boobs next year. I will be feeling better then. Just look at our 15yo Tibetan spaniel. Patrul (aka Popo). This time last year he was hairless and having treatment for cutaneous lymphoma. Now he's a sleepy old man with fluffy puppy hair :)

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