April 3, 2014
In case I ever feel like doing a stand-up comedy routine about the pros and cons of breast vs brain tumours:
Brain tumours are better than breast cancer because:
Brain tumours rarely spread outside the brain - so no need to worry about metastatic disease in the rest of your body, only spread or recurrence inside your brain. Breast cancer mets can pop up in bones, liver, or other organs, including the brain.
No need to worry about prophylactic surgery or reconstruction after brain surgery. No-one can see that you've had brain surgery, once the scars have healed and the hair grows back. If you choose to stay bald, you can have some impressive battle wounds to display to people who are into scarification and body-piercing.
No need to feel annoyed that pink is the colour for your cancer- grey is much cooler.
You can blame lack of energy, need for naps, fatigue, tuning out, irritability or emotional outbursts on your brain tumour or the after-effects of radiation. You can even have a convenient excuse for memory lapses or tactlessness (warning- use sparingly, or people may start to think you're impaired, and treat/accommodate you accordingly)
With brain cancer, your hair doesn't fall out all over your body, rather, it falls out according to the entrance and exit paths of the radiation. Ask your radiation oncologist to give you the most creative pattern they can. Spirals worked well for me. Much better than losing your eyebrows and eyelashes to breast cancer chemo. I missed them more than the hair on my head.
Brain cancers are rare, so you won't be offered endless stories of how people either experienced it themselves and survived. Rather, you'll discover an amazing ability to make people fall silent and change the topic of conversation without really intending to do so. Then they'll get back to you with news of a clinic in Germany, the US, or Israel where clinical trials are being conducted to treat people with brain tumours, not knowing that clinical trials usually have a placebo (no treatment) group, and have exclusion criteria for people with a prior history of cancer (they don't want to contaminate the results of the treatment trial with people with complicated histories).
Brain tumours give you an intimate perspective on how amazing a healthy brain is, and how adaptable brains can be to damage in certain areas. They make you appreciate every moment of your life before you knew you had one, and to regret not exercising more, reducing your stress or using your mobile phone prior to your diagnosis. Brain tumours also makes you regret ever banging your head in a college drama production, drinking too much at uni, and not having enough sleep or a healthy diet over the previous decade. Having a brain tumour removed successfully makes me appreciate the advances in neuroimaging and surgery that allow this to be possible, and has made me determined to live, love, eat and sleep well for the rest of my life, no matter how long that might be.
I used to think that if I ever got dementia, or a brain injury, it would be good to have no insight into my deficits. I thought it would be more pleasant to be unaware of memory problems or tactlessness, but now I'm not so sure. As someone who has always enjoyed a good memory, and who has been worried about offending or upsetting people, a lack of insight doesn't seem such an easy way out. At least with insight, I can try to support my memory with notes and other strategies, and I can apologise if I offend someone. Losing insight into how my behaviour affects others would undermine a fundamental part of how I see myself…. Having insight allows me to hope and plan and strive to be better, and to silence my inner critic.
Brain tumours are better than breast cancer because:
Brain tumours rarely spread outside the brain - so no need to worry about metastatic disease in the rest of your body, only spread or recurrence inside your brain. Breast cancer mets can pop up in bones, liver, or other organs, including the brain.
No need to worry about prophylactic surgery or reconstruction after brain surgery. No-one can see that you've had brain surgery, once the scars have healed and the hair grows back. If you choose to stay bald, you can have some impressive battle wounds to display to people who are into scarification and body-piercing.
No need to feel annoyed that pink is the colour for your cancer- grey is much cooler.
You can blame lack of energy, need for naps, fatigue, tuning out, irritability or emotional outbursts on your brain tumour or the after-effects of radiation. You can even have a convenient excuse for memory lapses or tactlessness (warning- use sparingly, or people may start to think you're impaired, and treat/accommodate you accordingly)
There are less treatment options to choose from with brain cancer- basically, there's surgery, if they can operate without killing you, and combined chemotherapy/radiotherapy. Although the chemo (Temodal (temozolamide)) causes nausea and vomiting, that's usually fixed by taking an anti-emetic (pleasant-tasting ondansetron) one hour before the chemo. But don't schedule your radiation for first thing in the morning: The chemo works best if taken one hour before radiation, and needs to be taken on an empty stomach. So you'll need to be up at least two hours before radiotherapy to take the anti-emitic and the chemo. Then you can have breakfast. This is still better than getting chemo infusions for breast cancer, sitting in a big clinic with other people hooked up to brightly-coloured liquids, trying to pretend to enjoy hospital sandwiches. With infusions, you need an infusaport - a titanium disc topped with silicone, inserted under your skin so that drugs can be directly infused into a major vein (sublcavian, or jugular). No infusaport = no more discomfort when sleeping on your side with no port positioned conveniently between your collarbone and shoulder, no need for the port to be flushed every 4-6 weeks, no risk of infection in the port, no painful needling of port to access it.
With brain cancer, your hair doesn't fall out all over your body, rather, it falls out according to the entrance and exit paths of the radiation. Ask your radiation oncologist to give you the most creative pattern they can. Spirals worked well for me. Much better than losing your eyebrows and eyelashes to breast cancer chemo. I missed them more than the hair on my head.
Brain cancers are rare, so you won't be offered endless stories of how people either experienced it themselves and survived. Rather, you'll discover an amazing ability to make people fall silent and change the topic of conversation without really intending to do so. Then they'll get back to you with news of a clinic in Germany, the US, or Israel where clinical trials are being conducted to treat people with brain tumours, not knowing that clinical trials usually have a placebo (no treatment) group, and have exclusion criteria for people with a prior history of cancer (they don't want to contaminate the results of the treatment trial with people with complicated histories).
Brain tumours give you an intimate perspective on how amazing a healthy brain is, and how adaptable brains can be to damage in certain areas. They make you appreciate every moment of your life before you knew you had one, and to regret not exercising more, reducing your stress or using your mobile phone prior to your diagnosis. Brain tumours also makes you regret ever banging your head in a college drama production, drinking too much at uni, and not having enough sleep or a healthy diet over the previous decade. Having a brain tumour removed successfully makes me appreciate the advances in neuroimaging and surgery that allow this to be possible, and has made me determined to live, love, eat and sleep well for the rest of my life, no matter how long that might be.
I used to think that if I ever got dementia, or a brain injury, it would be good to have no insight into my deficits. I thought it would be more pleasant to be unaware of memory problems or tactlessness, but now I'm not so sure. As someone who has always enjoyed a good memory, and who has been worried about offending or upsetting people, a lack of insight doesn't seem such an easy way out. At least with insight, I can try to support my memory with notes and other strategies, and I can apologise if I offend someone. Losing insight into how my behaviour affects others would undermine a fundamental part of how I see myself…. Having insight allows me to hope and plan and strive to be better, and to silence my inner critic.
