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.


Sunday, 15 September 2013

Out of the frying pan

Strange how the worst possible physical diagnosis could also signify the most amazing transformation in my life.

For the first time ever, I feel completely at peace in myself.
I feel like I am at home in my own heart, that I don't have to mind any more about what people might think of me. I believe that I'm actually an okay person.

No more worrying about appearing daggy - I am a dag, I'm ridiculously honest and open and trusting, and I don't care if I'm not cool. I'm me, and it's lovely.

I feel such a sense of bliss. It's like I've been shaken upside down and now I fit within myself for the first time ever. I feel safe in my own heart, and it is singing.

Other people have spoken about breast cancer as the life-transforming event, but for me it was an embarrassing inconvenience. I didn't care about losing my boob or my hair, they were never part of my identity. I blogged to keep people up to date, but I felt guilty for giving anyone any reason to worry about me, and I didn't feel like engaging emotionally over it. 

Breast cancer? Just a flesh wound for me. The support of others was wonderful, but I just wanted the whole thing to be over, and for life to gain some sense of normalcy. It was touching to be told I was inspiring to others, but I wasn't wanting or trying to be. I was just trying to do the best I could in the situation. I still am. Only now I don't feel like I'm letting anyone down if I have a bad hour or day. I'll embrace and nurture myself when I feel sad and scared and angry, and then I'll pick myself up again and keep moving on.

A brain disease? That's what I've always feared. The sudden loss of function, or an insidious decline over time - I've seen people maintain love and dignity throughout all kinds of terrible disorders, including CJD and frontotemporal dementia in a 21 year old girl with a baby, and my own dear father's 10 year struggle with normal pressure hydrocephalus. The loss of function and identity can be heartbreaking, so I devoted my career to helping people with brain disorders and their families and carers. I spent 6 wonderful years on the national committee of the college of clinical neuropsychologists, trying to improve CPD and other resources for my colleagues and students, so that we could provide better services for our clients. I have supervised, taught, mentored, and friended many delightful students in neuropsychology, who enriched my practice far more than I enriched theirs. All along,I was hoping to help us help our patients to the best of our ability. Improving clinical judgment, practice, supervision, and reflection, and hopefully one day getting the desparatley needed funding for neuropsychology training and services.

I didn't expect to become a Neuropsych patient myself.

Twenty years of working as a Neuropsych, and I'd seen a few tumour survivors. Patients who had developed problems after the surgeon had removed the life-threatening tumour. Neuropsych assessments are rarely ordered prior to surgery for tumours, unless there's the luxury of time to ensure the surgeon spares eloquent cortex. Neuropsychologists get to help later, when problems emerge after the life was saved.

GBMs have the power to hush  a room of neurosurgeons. 
I've gone and got one. It was a round, dark thing intruding below my right parietal lobe.. Not posterior enough to give me interesting visuals partial disturbances, not anterior enough to make my personality more delightful. On the somatosensory homunculus, it affects my tongue, lips, face, neck, arm to fingers, and down to my hip ( handy for the heparin injections they give after surgery to reduce th risk of blood clots). My leg seems unaffected, and it's mostly sensory loss. Not inconvenient, except for when I bite my lip while eating (another symptom identified through hindsight).

It's incredible bad luck to become a patient with this. But it's what has happened. And I'll deal with it.

So I'm in the fire now, a second  primary cancer in the space of a year. It's a cancer that kills many people within 12 months, but not me. I've made it through the first round or surgery, and I'll make it through the next. Then I'll recover and receive combined radiotherapy and chemotherapy, and will get to relax in the MRI for brain scans ever two months. If it comes back, we'll cut it out and zap it again. But I have faith that the CT and RT will give me the prolonged life that many people are reporting.

I saw a lawyer this morning and wrote my will, and set up a power of attorney, just in case. I should have done it years ago.

So now I'm lying in hospital, admitted a day early with dehydration, forcing myself to rest (I'm not good at it). 

I've written this post over the afternoon, interspersed with a nap, a good yarn to my roommate, and a visit from Ben and the boys. 

My bloods and electrolytes were all okay, and 2 litres of fluid over two hours fixed the dehydration. My TSH was a little low, so my thyroxine will decrease from 125 to 100 per day. Being a little hyperthyroid would contribute to sleep disturbance, and to feeling wound up. Maybe it also helped me lose 3 kg in the last week! (I hope that weight stays off). The steroids also contribute to sleep disturbance. I slept from 12-2 last night, then read compulsively, then slept from 5-6, when the security company called to say the alarm had tiripped in our place, did I want them to send the patrol?

I cheekily asked Ben to give me breakfast in bed (I've never wanted it before), and then I felt a wave of fatigue pass over my body. So I lay on bed for an hour, mind not turning off. Another hypnagogic hallucination -  a little dog with a red coat came and sat next to me. 

Walking at Salamanca, I felt unsteady on my feet, and my visual acuity wavered, just like it used to after my 36-hour essay-writing spells at Uni. I felt unwell, just like the day before, and thought it prudent to come back to the hospital to get checked out. It's not like I'm having a minor operation at 4pm on Wednesday. I thought it was probably best to get checked out, and looked after. The nurses here do that very well. I've felt so cared for and supported, and they have held my hand and given me hugs that have helped me through this insane series of events.

My neurosurgeon is one of the loveliest, kindest, doctors I've met. Being treated so well is helping me to relinquish my need to stay strong and do everything myself, to calm down the Super Fiona who can run faster than a speeding bullet, be stronger than a locomotive, able to leap tall buildings in a single bound. Its helping me rest the Kimba the White Lion in me, knowing that others can fight injustice and ignorance with love. Being here, and being truly me, I can relent to my need for sleep,  to turn off this anxious vigilance. And I can have two temazepam tonight, if I need to. Luxury!

There's a sleep window open right now. Here I go.



Posted by at