Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Vodafone are jerks

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, 21 September 2013

Vodafone are jerks

Vodafone are jerks.

They texted me last week to say I had gone over my monthly data cap, and that my service was at risk of being suspended. I rang and and explained my situation, and paid the $500 owing. Only to get another warning text today, because I've accrued another $200 in data charges in the past week. The plan resets on the first of the month. I asked what to do - they're blocked my net access on the phone, issued me with a $15 top up that will give me up t$80 worth of calls and texts until then, and have changed my plan from a $49 to a$65 one, so that I can make unlimited calls and texts in Australia. But only after october 1st.

I told today's automaton that her colleague should have told me about the date issue last week. I had no idea they'd keep charging me as it was in the billing cycle. He, at least, was compassionate towards me when I told him the whole "oops, I've had brain surgery, was worried I was going to die" story,

I was in tears today to her, and she asked if I would like to have a glass of water!!!

I've never so much wanted to punch someone through the telephone line,

It gave me a chance for a good, angry, cry. To rage against the insanity of systems, of the inflexibility! Against the kind fool last week who did not explain to me what was going on.

She kindly said that I can wait to pay the outstanding $200 when my next bill comes. Yes, she would pass my complaint at the lack of proper communication on to her managers.

I told her I have been a happy and loyal Vodafone customer since 1999, have never had any complaints with them, and haven't even had much trouble with blackouts. Surely I deserve some special consideration given the circumstances I have been going through? "sorry madam, everyone knows that the plan only resets on the first of each month"

Well, I bloody didn't, and they should have explained it last week.

So if I send you an SMS, please call me. I'm afraid to use my phone, which has been a lifeline these last two weeks.

Glad to have a 3G card in my iPad, hope it holds out until we get home to our nice new, freely installed FTTH NBN wifi connection.