Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: One week post radiotherapy

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, 2 December 2013

One week post radiotherapy

A brief update, just to let you know I'm feeling better each day, and that my silence hasn't been because I've been unwell, I've just been sleeping, a lot.

How much, you ask?

Well, David still wakes me up between 515 and 6 am, and if I'm lucky, I get back to sleep for an hour or so, but if I can't, I get up and have breakfast, and all my morning medications (thyroxine, Epilum, Keppra, nexium, Tamoxifen, Dexamethasone), and by the time I've finished doing that, I'm ready to lie down again. Just making and eating my own breakfast of porridge and eggs is exhausting. Last week I was sleeping for 2-3 hours in the morning, Caroline had to wake me for lunch (can't miss the lunchtime Dex), and then I'd sleep for another 2-3 hours in the afternoon, often feeling too tired to eat dinner (I'd have to force myself), or to stay up and talk with her and Ben in the evening. It was wonderful to have her around for three weeks, she went around helping with housework, laundry, and the kids in a calm and loving manner, and gave Ben a companion for conversation over a glass of wine each night (no alcohol for me any more). I felt able to relax and get the rest I needed, to let go of my need to direct things in the house, and to trust that everything was being looked after. I'm grateful to Cressida, Libby, Liz, and Farah for their earlier visits that helped me gradually learn to be cared for.

The result of all that sleeping, and perhaps the radiation finishing, is that I am now starting to feel normal again. I've got a cold (runny nose, sore throat, sinusitis), but it's the best cold I've had in my life! It's so good to feel my body mounting an immune response to an infection, and the sleep I've needed in the past couple of days has felt normal, like the kind of sleep you need for a cold, not brain irradiation sleep.

While it's limiting to be prohibited from driving, I'm enjoying being driven around, as long as the driver is slow and steady! Launceston is so pretty at this time of year, and I'm enjoying looking at all the lovely old houses and the beautiful spring flowers. I naughtily moved one of our cars in our back yard last Friday so that Mum could park out the back (I didn't leave our property), and it was satisfying to find that I was able to back a car as well as ever. However, I'm not in any hurry to return to driving. It's very tiring to pay attention to visual stimuli for any length of time, and I often end up closing my eyes during drives if I'm feeling tired.

It's just so good to be alive, things like losing my hair, not being able to drive, needing to sleep, having had a mastectomy, not being able to work - they all seem irrelevant. If my GBM hadn't been detected when it was, if it hadn't been operable, if there had been complications during surgery, I could well be six feet under right now, resting with the other Bardenhagens in the lovely hillside cemetery in Lilydale, Tamania. Not a bad final resting place, but not for me for many years.

I have made it past the 3-month median survival time (a meaningless figure that destroys hope in people who don't understand statistics), and I'm now moving into the long tail of the skewed distribution for people with this condition. In case I haven't said it before, don't despair over the median survival times, if you've read about GBMs. Median means 50% of cases, and 50% of people die in the first 3months for a number of reasons: the tumour is so aggressive, it may not have been detected in time; the tumour was in a position where it could not be operated; complete resection of the tumour was not possible; there were complications during surgery; the patient was old or sick at diagnosis; the patient could not afford treatment (yes, this happens outside Australia); the patient/family or the treating team decided that treatment was futile, or, I suspect, some people just give up hope. These multiple factors result in a right-skewed distribution (see http://www.dummies.com/how-to/content/how-to-identify-skew-and-symmetry-in-a-statistical.html) with 50% of cases falling in the first 3 months, but 50% of patients surviving for years or decades after that. I'm at the start of the longer end of the rskewed distribution, and am doing everything I can to make the years ahead as healthy and happy as possible.

I have so much to do with this gift of life that I've been given. First, to heal myself and share this gift of love with Ben and my boys, then to try to give hope to others.

Love and light to all of you.