25 November 2013
The only downside to the weekend: the realisation that my idea of being able to comfortably be a bald-headed woman in public is possibly a fantasy. We had Nathaniel's birthday party on Friday, and my hat was too hot for the venue, so I took it off, exposing my recently clippered scalp. Most of the kids (9yo boys) didn't give me a second glance, one or two looked curiously, but they all came and thanked me at the end and gave me lovely smiles. The mums who I knew were fine about it, and we conversed normally.
I spoke with two of them about a set of homework projects that had been set for Year 2, and confident that I now had spoken to more than 5 parents who have issues with it, I asked a new mother what she thought, making the mistake of saying what I thought first, perhaps a little too passionately. She said that she and her husband had found it required a lot of work, but that it was interesting for their son, and allowed him to bond with his father. I silently envied her non-working mum, healthy family situation, and then had the sense, for the first time in my life, as being looked at as someone who was somehow disabled - the passion and intensity that I have applied to so many things over my life seemed to be interpreted as signs of a dysfunctional brain. She avoided me for the rest of the party. Caroline (my cousin) later said I seemed to come on a bit strongly, which brought tears to my eyes. I don't want to scare people away - I've spent all my life trying to be kind to people, and to engage them, and make them feel safe. It feels like a failure to have stuffed up - I should be able to ask someone for their opinion and not get too passionate in expressing a contrary one.
I've become more passionate about a whole lot more things lately - climate change, asylum seekers, and political corruption in particular. Perhaps because I'm not working and I'm thinking of the future for my boys.
I've always been good at unintentionally reducing my mother to tears over silly little things, and now that I've had brain surgery, I'm trying hard to avoid it, but not successfully. Old pattens are hard to break, and I worry that people will see any irritability on my part as a sign that I'm cracking up or mentally unstable.
Writing that, I worry that I'm becoming paranoid. But I don't think people are out to get me, I just worry that people won't understand that my irritability or poorer concentration are because I am so tired, I can only focus on one thing at a time, that I'm painfully aware of how fragile life is, because I'm undergoing radiation and chemotherapy, because I'm on steroids. I'm worried, like many of my patients before me, that people will think I'm crazy.
How ironic! The neuropsychologist who prided herself on giving feedback and educating patients and families is anxious that others will think she's crazy. She knows she's not, but there are so many people to educate.
When I mentioned the bald headed thing to Ben tonight, he told me that I shouldn't bare my head in public, that it's too confronting for people, that I shouldn't let my ideology (that people with disabilities should be able to be accepted in public) override social sensibilities. Unfortunately, that irritated me just a little, and I had to remind him that men often make the mistake of giving women solutions to problems when women just want to talk to men about their feelings, which helps them to come up with their own solutions. Which is why I blog. I think I might need to talk to someone at the Cancer Council about this though, they'll have experience with it.
Maybe it's the scars on the head that do it. People are used to puffy faces, hats and scarves in cancer patients, but for women to reveal the bald head is possibly too confronting. One of the radiotherapists said she used to get funny looks and even calls of "dyke" from passing cars when she shaved her head for charity. I've had some funny looks when I've been walking with my forearm crutch - at times I can get along at a good pace, but at others I'm so tired, I need to lean on it. I won't be walking outside with a hat off, because it's either too cold, or I have to keep the sun away. But why can't I be bald inside? Why should I be ashamed of my baldness and scars? I feel fake wearing wigs, and if we hide disabilities, it just stops people overcoming their fears and recognising that all people are the same.
An interesting lesson in how much courage it can take to accept one's changed appearance and capacities and to not be afraid of showing it to the world.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
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.
