Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: The long wait

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.

Saturday, 3 January 2015

The long wait

Last time around, the tumours were discovered on a Wednesday, we drove to Hobart and I was admitted the next day, and the first one was taken out the following day. This time, the scan was on Friday, I won't be able to speak to the surgeon until Monday afternoon, and it looks like surgery might happen on Wednesday. The waiting is agonising.

I'm trying to keep busy, but it's not an entirely efficient strategy to ward off the feelings of panic that started to rise this morning.

Ben gave me some Valium before, I don't think it's made much difference. I feel like smashing something at the moment. Hanging out the washing wasn't as equivalently cathartic as smashing something would be. It's 30 degrees outside and too hot for pruning the roses.

I'm going to write a brief post now, and have a nap. One of Nathaniel's friends is coming over, but I don't feel like talking to anyone. I'm angry that I had to get brain cancer. If it had only been the breast cancer, I'd be all better by now and would have been back at work for a year.

Now I look around snd see all the possessions we've accumulated, the books, the towels, the linen, the clothes. The beautiful things that have no sentimental attachment for anyone else.

I wish we'd spent time accumulations experiences and memories, not lovely things that are pleasant to have, but which don't make life more enjoyable.

I'm tempted to sell all the unnecessary stuff and donate the money to charity.

I'm bloody angry that gbm cells can migrate through the csf, which surrounds the brain and the spinal cord. The little bastards can potentially pop up anywhere. I'm going to find an immunotherapy trial so that my immune system can identify and attack the glioma cells, while I still have a brain left to preserve.

I've received lots of well-meaning posts from friends and family on Facebook or email. It's nice to know people are thinking of me. It's less helpful to be told to "stay positive". It takes an incredible amount of energy to do so, unless I just switch into denial mode. It's easier not to dwell in the potential negatives, to keep busy with constructive or pleasant activities. Being told to stay positive isn't consoling in any way. I know people who say it must mean well, but it starts to make me think that people think I haven't been positive enough do far. How much more positive do I need to be? Should I sing and dance and record it to post on YouTube?

Trala, Tralee, I'm so happy,

I have an aggressively malignant tumour in my brain,

I best it once, it's come back again.

I worked so hard to make it go away,

but it liked me brain and still wants to play.

I'd rather it didn't, I want it out.

It makes me went to stamp and shout.

Maybe I'll win, maybe I won't

This thing in my head ought to catch a boat.

I need to sleep, I need to weep.

Don't tell me what to do or how to feel.

Just tell me you care and that your support is real

Remind me of times when we laughed in the rain

When we drank too much, I won't do that again.

Be with me now, I'm here and I'm well

Don't think of the future, we never can tell

The weight of predictions that I will beat this thing is heavy to bear.

Let's not worry about the outcome, let's make the most of the journey,

The endpoint is unknown, I'd rather focus on enjoying the way, without the burden of possibly impossible expectations

Do I seem like a grinch? Ungrateful, unkind?

I am glad for support, it's just hard to know that people are expecting so much of me. I'll do the best that I can, I just need you to sit with me, walk with me, talk with me. Enjoy every moment and not think of the futures. It will look after itself.