I'm feeling really unhappy and frustrated at the moment. It's 10 weeks since chemo started, 13 weeks since I had my surgery, 15 weeks since the ultrasound detected a lump. There are 9 weeks of chemo left, and then six weeks of radiation. So I'm half-way there, mathematically speaking.
Emotionally, the next fifteen weeks seem like an aeon. I'm getting increasingly tired of having to go through this treatment. I'm starting to dread having my port needled, and going near the hospital. I'm getting lonely from limited social contact (thanks for the recent emails and phone calls, it has made a difference - you know who you are). I'm frustrated by well-meaning people who tell me I should focus on my health and shouldn't take an interest in what is happening at work, and shouldn't want to be involved in my profession. Just because I'm having a fatiguing and nauseating treatment for a life-threatening illness doesn't mean I'm incapable of thinking or making decisions for myself! I want to be intellectually stimulated and challenged, I just need to be in a comfortable resting position...
There are some people who continue to work throughout chemo, either through choice or necessity. I don't know how they do it. I'd find it too difficult to try to do my work, the fatigue makes it hard enough to look after myself and my family, let alone contemplate doing neuropsych assessments and writing reports. But I'm still passionate about advocating for people with brain disorders, and for improvements in early diagnosis and interventions, something that can be done from the comfort of the couch.
My current experience is teaching me the importance of empowering patients to make lifestyle decisions for themselves, to listen to and honour their wishes and aspirations, and not to patronize them with platitudes about putting their health first, and with recommendations to "let go" of other things they care about. Emotional wellbeing has a significant effect on physical wellbeing. If an ill or disabled person is told they can't do something they love because they need to put their health first, I imagine they would feel frustrated and resentful at the all-encompassing health issue that prevents them from pursuing their dreams. Far better to listen to what makes them happy, what they would love to do, and to see how they can do it, rather than shutting them down with the words "you need to focus on your health." Of course we shouldn't neglect our health, but there needs to be a balance.
People may imagine the sick role involves languishing on a chaise-lounge like a breathless corseted Victorian woman, but that's not my reality, not often. I like to walk outside, I love to talk to people, to hear their stories.. I need to monitor and ration the energy I spend on things, but I don't need other people to tell me what I can and can't do. I've got much better at saying No, and in asking people for help, but I'm still the same person I was before. I'm better at recognizing what is important. I'm not letting cancer take over my life. I'm not making it my career, even though it takes up a lot of time. I'm trying to improve the way I deal with stress and anxiety, and although my recent insights have been distressing, it's good to find out that one of the things I fear losing the most is the ability to help, educate, and inspire, and to contribute to improving the lives of others. It's good to recognize the fear that a lack of contact with others means that I am somehow invisible, irrelevant, or that I don't exist. It's nonsensical, of course, but it shows me how much joy and excitement I get from interacting with others. In articulating this fear, I will make sure that I get the contact with friends and family that I need, rather than becoming a hermit, afraid that people have forgotten me or don't care.
Is that enough introspection? I'm feeling better for sharing this, albeit a little vulnerable. But sharing is also making me stronger - My friends Libby, Anne and Liz have formed a Neuroboob team for the Mother's day walk in Melbourne, joined by Will, Sarah, and Josh, the junior Neuroboobs. So I'm feeling loved and supported, very amused, and glad that this blog is keeping family and friends informed of how I'm doing. It means that we can talk about other things when we do catch up, and I don't have to repeat the boring details.
Thanks for reading, and for keeping in touch.
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.
