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, 15 July 2013

Positive thinking

What do people mean when they tell someone with cancer to "stay positive"?

It's the most common homily I've encountered since January, and while I appreciate the good wishes behind it, it's really starting to irk me. 

Imagine you have been diagnosed with a life-changing, potentially life-threatening illness. You feel worried, even scared at times. You wish it hadn't happened, you keep reviewing your life for all the things you could have done, should have done, differently: More exercise, more vegetables, less sugar, less alcohol, less stress, more fun, less work, more family. You keep these ruminations largely to yourself because you feel foolish engaging in such a futile exercise. You keep your fears to yourself because you worry about becoming overwhelmed if you speak them out loud. You do your best to present as normally as possible to others, even though it feels like things will never be the same again.

Then someone asks how you are, and you let a little of what you're feeling or going through slip out. It's taking a risk - will they listen and empathise? Will they pity you? Will they slowly clam up and avoid you studiously afterwards? Will they come out with the positivity mantra, which is coloured by the rest of the interaction?

If a person listens well, they rarely say "keep positive". They ask questions and seem genuinely interested in hearing the response. They might provide embarrassing praise for how well you're coping with everything, even though you feel, at best, like you're just getting by, or at worst, like you're not sure how you're managing to even feed yourself some days. 

Being told to stay positive sometimes makes me feel like I'm being reprimanded for talking about the difficult stuff (if only the listener knew the half of it!). Other times it feels like a plea from the listener for me to shut up and stop complaining (not knowing how guilty I feel for burdening others with anything). Other times it seems like they're implying that I'm not being positive about anything (this makes me really angry- do you know how much effort it takes at times not to succumb to self-pity and anger at the unfairness of fate?). And at other times its as useless as being told to drink water and breathe.

The problem with being told to stay positive, for me, is that it doesn't help one iota. Maybe I'm weird in that I've grasped the importance of positive thinking for most of my life. But in case it helps you when speaking to people going through difficult times, this is what I'd prefer to being told to stay positive: I'd prefer to feel that I am being listened to, that my concerns and experiences aren't being dismissed, and to receive some validating comments, like "you've been going through a hard time, it's great that you're hanging in there and not giving up." Or "wow! That's tough/unlucky/awful. Can I come over and cook for you/take you out for lunch/take you shopping some time?"

Speaking for myself, I don't want to be told to stay positive. I'd rather feel listened to, valued, appreciated, and then engaged in a conversation about broader things. Cancer is just something crappy that's happened to me, it doesn't define me.