25 October
I watched the first episode of "Jai'me, private school girl" yesterday, on ABC iView. It was horrifyingly true to life, like a distillation of all the awful things I saw and experienced in boarding school, from 1980-1983. The way she bullied the boarders, the definition of "quiche" (thighs mustn't touch) - it's horrible, and not at all funny. Thankfully, the nasty words about lesbians were not something on our radar back then, though there was a term when the favourite silly word was dildo - until a housemistress told us what it meant, and it was dropped like a hot potato. The show was like watching a train wreck in slow motion, and makes me so sad that girls are still cruel to girls, when we should be kind to each other. It wouldn't be funny, but it also makes part of me hope that the Jai'me character gets publicly humiliated, drawn, and quartered, as punishment for all the creatures like that who have inflicted such nastiness on other human beings. Interesting, I thought the rage at the bullies had gone away. Obviously not. Part of me still wants to turn into the incredible Hulk and smash them, but then I'd feel ashamed for losing control, for not turning the other cheek. Better to say "No, this behaviour is unacceptable." and walk away. And, on sleeping on it, I'm not sure that girls like Jai'me are fully aware of how destructive they are. They seem to come from a place of supreme self-righteousness, supported by the shallow image-based values of magazines, music videos, and popular culture, and have no insight into how destructive it all is on their self-image and self-esteem. Putting other people down is a good way to make you feel good about yourself. A bit like what the government is doing with asylum seekers (I feel another post developing about that whole issue).
If our society stopped putting do much value on superficial things like appearances, maybe we'd be kinder. Even media portrayals of cancer focus on the superficial, including the infuriating "Look Good, Feel Better" ads which simultaneously glamorise cancer while trivialising the seriousness of all cancers. They suggest that If you put on some makeup, you'll feel better, even if you're nauseous and fighting for your life. Yeah, sure. If you're lucky.
It was fun to go to the LGFB program before my treatment started. I felt okay, I'd only just started to lose my hair, the whole affair was like a girly learning to apply makeup function. Most of the women were in the early stages of treatment, few had lost their hair. But after 9 months of cancer treatment, I'm so tired, and I'd be pretty irritated to go now. I didn't have the energy or inclination to do the makeup thing during my breast CA chemo - it's pretty hard to put mascara on 7 eyelashes ;) I didn't even have the energy to juice the vegetables that I was supposed to be juicing each day.
It's nice to have eyebrows, eyelashes and hair again, it feels good to put on mascara again, but my hair is falling out in a big mangy patch above my right ear, and my scalp is sensitive there, and at the back. There's only so much that makeup can do. Clothes help, but I'm worried about spilling food on them with my new clumsiness and visual changes, so I'm being careful about wearing light colours when I might end up eating in them. I feel like I need an apron to eat in..
It was fun to go to the LGFB program before my treatment started. I felt okay, I'd only just started to lose my hair, the whole affair was like a girly learning to apply makeup function. Most of the women were in the early stages of treatment, few had lost their hair. But after 9 months of cancer treatment, I'm so tired, and I'd be pretty irritated to go now. I didn't have the energy or inclination to do the makeup thing during my breast CA chemo - it's pretty hard to put mascara on 7 eyelashes ;) I didn't even have the energy to juice the vegetables that I was supposed to be juicing each day.
It's nice to have eyebrows, eyelashes and hair again, it feels good to put on mascara again, but my hair is falling out in a big mangy patch above my right ear, and my scalp is sensitive there, and at the back. There's only so much that makeup can do. Clothes help, but I'm worried about spilling food on them with my new clumsiness and visual changes, so I'm being careful about wearing light colours when I might end up eating in them. I feel like I need an apron to eat in..
There's no such thing as a good cancer. And the promotion and services for some cancers means that other cancers get less attention and the patients feel like they're missing out. Sure, breast cancer is common, but all the focus on it in the media is annoying. It almost makes it glamourous - Kylie Minogue, Olivia Newton-John, Kerry-Anne Kennelly. They all survived, you can too!
The McGrath breast cancer nurses are a nice idea, but why shouldn't people with other cancers have dedicated nurses as well? Maybe they do in capital cities, but not in Launceston. It should be part of our standard oncology care. I've noticed deficiencies in coordinated care in the past few months, in terms of linking patients with available services. For example, it's up to us patients to investigate the new Cancer Support Centre. If they had given me an appointment, I'd have been there already, but I was so damned tired after my breast CA RT, there was no way I was going to go over the road to see what they might have for me.
I've heard of patients having melt-downs in waiting rooms because there isn't a specific nurse for their kind of cancer. There should be nurses, or better still, multidisciplinary teams comprising medical, nursing, and allied health staff, who follow patients with cancer from diagnosis to end of treatment. I appreciate that each kind of cancer has different issues, and that specialised nurses may be needed for lung/colorectal/breast/head/neck/other cancers, but they should be available. Even in regional centres. It's easy to feel lost in the system, to not be sure of what happens next. And I'm someone who works in the system! Imagine what it's like for a lay person.... It's not that hard to set up a system that provides education to patients and their families, links them in to available services, and also provides continuity of care through a central team to answer questions. It would just require some funding. The perennial problem - but this is where cancer fundraising efforts should go. Get rid of the pink ribbons and all the other colours, raise funds for support for all cancers, improve quality and continuity of care for all patients. It shouldn't be dependent on cancer type or gender.
My two oncologists have been fantastic, but I have felt like I've been pestering them at times, and I hate that. The staff in the emergency department and the oncology ward, and the chemo and radiation clinics have also been fantastic, but it's awful being a patient. I'm sick of getting sick, of needing other people to look after me, of being vulnerable. It's really making me swallow my pride and realise that I'm just as needy and vulnerable as everyone else, and that it's okay to need other people to look after me. It's not a sign of weakness to ask for help. Refusing to do so puts me at risk of adverse outcomes, and I want to avoid them at all costs. So I have to eat humble pie and rest when I need to, ask for help when I need to, and let go of my need to feel in control. That's hard for someone who has tried to do everything for herself since she was a toddler.
My perceptions of a gap in care might because Ben and I are being very proactive in seeking help and because we have a high degree of health literacy. I realised the other day that if I wasn't a neuropsychologist and able to read the medical literature, I think I'd be in a deep depression right now, worrying about my vision, my fatigue, my irritability, my sensitivity to light, sound, overstimulation, my confusion. I'd probably think I was sure to die in the next 12 months. No bloody way, unless I get run over by a truck. Which could happen to any of us.
I wonder how much outcomes are affected by patient perceptions of prognosis, and how well they're educated about their condition?. Research shows that mood and anxiety affect outcomes after stroke and other acquired brain injuries. I'm sure the same would apply to cancer. If you felt that your outlook is futile, then it would be so easy to succumb to the fatigue and nausea and to give up hope. I'm not going to do that. Fatigue, sedation, confusion, nausea - they're all temporary. They can be treated, or avoided with rest and other strategies. Giving up hope - that's a more difficult issue. My month of Dex-induced sleep deprivation gave me enough of a trippy experience to make up for a lifetime of avoiding all recreational drugs. Whether valid or not, I now have great faith in the divine golden light of love that is the common source of all life and creation, and I know that we are all unique souls who are connected by love and the light. The whole experience gave me a sense of calm, contentment, wonder, and bliss, and I relax into that feeling every time I have my treatment, and when I try to sleep. Sorry if I've lost the lot of you here, but I've seen the source of life, and it's non-denominational, non-cultural, non-religious. It's just love. It connects us all. All is going to be well, whatever challenges life throws at us, we will all be okay and united in love, as we are every day. We're just not that good at seeing it most of the time.
better go now before someone calls the men in the white coats :)
The McGrath breast cancer nurses are a nice idea, but why shouldn't people with other cancers have dedicated nurses as well? Maybe they do in capital cities, but not in Launceston. It should be part of our standard oncology care. I've noticed deficiencies in coordinated care in the past few months, in terms of linking patients with available services. For example, it's up to us patients to investigate the new Cancer Support Centre. If they had given me an appointment, I'd have been there already, but I was so damned tired after my breast CA RT, there was no way I was going to go over the road to see what they might have for me.
I've heard of patients having melt-downs in waiting rooms because there isn't a specific nurse for their kind of cancer. There should be nurses, or better still, multidisciplinary teams comprising medical, nursing, and allied health staff, who follow patients with cancer from diagnosis to end of treatment. I appreciate that each kind of cancer has different issues, and that specialised nurses may be needed for lung/colorectal/breast/head/neck/other cancers, but they should be available. Even in regional centres. It's easy to feel lost in the system, to not be sure of what happens next. And I'm someone who works in the system! Imagine what it's like for a lay person.... It's not that hard to set up a system that provides education to patients and their families, links them in to available services, and also provides continuity of care through a central team to answer questions. It would just require some funding. The perennial problem - but this is where cancer fundraising efforts should go. Get rid of the pink ribbons and all the other colours, raise funds for support for all cancers, improve quality and continuity of care for all patients. It shouldn't be dependent on cancer type or gender.
My two oncologists have been fantastic, but I have felt like I've been pestering them at times, and I hate that. The staff in the emergency department and the oncology ward, and the chemo and radiation clinics have also been fantastic, but it's awful being a patient. I'm sick of getting sick, of needing other people to look after me, of being vulnerable. It's really making me swallow my pride and realise that I'm just as needy and vulnerable as everyone else, and that it's okay to need other people to look after me. It's not a sign of weakness to ask for help. Refusing to do so puts me at risk of adverse outcomes, and I want to avoid them at all costs. So I have to eat humble pie and rest when I need to, ask for help when I need to, and let go of my need to feel in control. That's hard for someone who has tried to do everything for herself since she was a toddler.
My perceptions of a gap in care might because Ben and I are being very proactive in seeking help and because we have a high degree of health literacy. I realised the other day that if I wasn't a neuropsychologist and able to read the medical literature, I think I'd be in a deep depression right now, worrying about my vision, my fatigue, my irritability, my sensitivity to light, sound, overstimulation, my confusion. I'd probably think I was sure to die in the next 12 months. No bloody way, unless I get run over by a truck. Which could happen to any of us.
I wonder how much outcomes are affected by patient perceptions of prognosis, and how well they're educated about their condition?. Research shows that mood and anxiety affect outcomes after stroke and other acquired brain injuries. I'm sure the same would apply to cancer. If you felt that your outlook is futile, then it would be so easy to succumb to the fatigue and nausea and to give up hope. I'm not going to do that. Fatigue, sedation, confusion, nausea - they're all temporary. They can be treated, or avoided with rest and other strategies. Giving up hope - that's a more difficult issue. My month of Dex-induced sleep deprivation gave me enough of a trippy experience to make up for a lifetime of avoiding all recreational drugs. Whether valid or not, I now have great faith in the divine golden light of love that is the common source of all life and creation, and I know that we are all unique souls who are connected by love and the light. The whole experience gave me a sense of calm, contentment, wonder, and bliss, and I relax into that feeling every time I have my treatment, and when I try to sleep. Sorry if I've lost the lot of you here, but I've seen the source of life, and it's non-denominational, non-cultural, non-religious. It's just love. It connects us all. All is going to be well, whatever challenges life throws at us, we will all be okay and united in love, as we are every day. We're just not that good at seeing it most of the time.
better go now before someone calls the men in the white coats :)
