My brother generously sent me a book called “Crazy Sexy Cancer Tips”, by Kris Carr. She’s a 31 year old American woman who has a rare cancer (epithelioid hemangioendothelioma). I think it’s rarer than mine – certainly harder to pronounce!
She noticed that there was precious little out there for young women with cancer. Apparently, there’a a lot available for older people and children, but if you’re in your prime, perhaps you’re not supposed to get cancer…?
Well, it happened to her and she decided to make a film about it, and then the book followed – memoir, tips and insights and a whole new career of inspirational speaking, of her experiences, thoughts, revelations, etc. I have to confess, it’s all VERY American and Yeehaw! for me. It’s irreverent and celebrational – which definitely has its merits, but can also be rather annoying.
While I can feel a bit scornful about her new career as a speaker on the back of her experiences, I do quite admire her for doing it too – that does take some doing, especially when you’re dealing with the emotional, physical and other impacts of cancer diagnosis and treatment. But it does make me think how little I feel I have achieved out in the world and I do not have the energy just yet to change that. Hmmm….
The book has a foreward by Sheryl Crow… Did you know that she was diagnosed with breast cancer in 2009? After surgery, she is now in remission. And, did you know she used to be in a relationship with Lance Armstrong, one of the most famous cancer patients?
Amongst other words of wisdom, Kris Carr says: “Cancer is nothing to be ashamed of. You didn’t fail. The big life question isn’t whether we’re going to die. Life is a terminal condition: cancer patients are just more aware of it.” That is so true!
Many of us may wonder from time to time about the manner and timing of our death… it WILL come, you know! For me, unless that no. 79 bus catches me unawares one day, I now have a fairly good idea how long I may have, so it helps to focus – well, on a good day, it does.
I can see how the name ‘Crazy Sexy Cancer’ concerned some people… Was she being flip, disrespectful, inappropriate? She says, “No, I still had a sense of humour, which I wasn’t going to amputate just because there suddenly was this really serious thing in my life. I was still crazy, sexy, curious, silly and struggling. Poking fun at cancer helped me cope with it.” It’s words like these that made me like the book and her attitude.
Then comes the other stuff: “What if we could shift our perception and come to understand cancer not as a stereotypical death sentence, but as a chance to learn, to dive deep, to grow and smash stigmas, to truly live life?”
Sometimes this feels like the most profound and real and totally agreeable-with, inspirational pronouncement. At others it feels like another stick to beat oneself up with. Hmmm….
When I feel rubbish, when I’m lolling listlessly on the couch, aching and drifting in and out of sleep, or getting out of breath just sowing some seeds in the garden, it makes me feel like I’m not doing my bit, not seizing the opportunities for growth on offer. I’m not using this great opportunity to the best of my ability…
I have encountered these feelings before, in numerous self-help books and theories over the years and I’m not about to be taken in again. This is MY journey and I am doing this trip in my own way… hopefully with fellow travellers and companions who support me to do it my way on my personal journey. If they can’t, they know where they can disappear…
I really don’t need any help with self-flagellating, whether over diet/nutrition, exercise, contributing to the world or achieving goals. It didn’t make me happy when I was “well” and “normal” and I’m definitely not taking that stuff on now. That is one thing I do love about this condition, just being ok with stating my needs and wants clearly and feeling ok with letting people go if they can’t support me in that.
I like the idea of a cancer posse that Kris proposes – other women/people going through the cancer experience. So far, I’ve found two other “cancer babes” to connect with. One is my old friend, Rachel, who is now post-treatment for breast cancer and a very wise friend (also a blogger – check out my blogroll). I had a lovely, connecting visit with her last week, chatting on her couch about the emotions and physical issues we each face. The other is Rhiannon, who I met at Horton Women’s Holiday Centre – mentioned in a previous post (another cancer blogger – see blogroll).
It’s actually quite interesting how my identity and sense of connection changes when I connect with other people going through similar issues… Makes me feel much more supported, validated, reassured and real. I may no longer be the life and soul of the party – was I ever? But I feel well supported and connected with my “sick” friends.
So far, I’ve not connected with anyone else with Multiple Myeloma – apart from chatting on the Myeloma UK discussion forum, but as yet no one on there seems to be in a similar space to me, so I’ve not really felt a connection despite it being a supportive space. I did get a comment from another myeloma “babe” on here, whom seemed to share quite a few similarities, but not yet heard back from her.
Actually connecting with people I relate to is more important than a shared disease. So my already-friends with blood pressure/fatigue issues, ME, diabetes, lupus and lung disease, who can relate to being invisibly disabled and for some, having a limited lifespan are exactly what’s needed! It certainly stops the need for a lot of explanation (so wearing), or feeling a tad guilty for not helping with food preparation or washing up when I was visiting friends recently. I didn’t allow myself to feel too guilty!
Kris Carr gets on the wagon of healthy eating, nutrition, vegan, wheatgrass and other green concoctions, etc. I don’t disagree with it at all, and am quite sure that a healthy, enzyme-filled, alkaline diet is most beneficial. But when I’m struggling to put each morsel of food into my mouth, then the idea of raw food is just too hard right now. I’ll stick to my morning melon and chocolate ginger biscuits, followed by handfuls of pills!
Trouble is, while I do like salads for example, they need to have a good dressing and my taste is so badly affected these days that I don’t enjoy the taste of vinegar, so that spoils the whole salad scenario. 😦
However, I have added turmeric, Vitamin C, Vitamin B complex and chlorella to my daily mountain of pills. Turmeric has great anti-cancer properties; Vitamin C is a good antioxidant; Vitamin B is just for general well-being particularly given my poor appetite; and chlorella is a tiny algae which amongst other benefits is known to strengthen the immune system. Most of these recommendations came from my friend Debbie, who successfully self-treats lupus with diet, nutrition and supplements. (Where’s your blog, Debbie? LOL!) I sure as hell am not going for an enema or colonic irrigation, with or without a wheatgrass implant, as recommended by Ms Carr!
I found that as a less-than-young woman, a lot of what Kris Carr discovered through her cancer diagnosis, I had already encountered by maturing through life. (Some might say otherwise! :D) Things like making the most of life, being brazen and as my mate Simon (yet another blogger!) calls me “a gobby cow”, not always following the rules – especially if they don’t fit! Well, those of you who know me will know I’m a natural rebel and that’s not changed over the years or with this diagnosis.
Here is one review of the book:
“When I had cancer, I too, was 31. I didn’t go through a decision-making process about whether to tell my esthetician about my illness. I didn’t go on a “cancervation” with my “posse,” because I was working to pay my bills and keep my health insurance. I didn’t attend retreats and trainings and buy hundreds of dollars of goods from Whole Foods on shopping trips and make a documentary about myself. People deal with trauma and heal in different ways, and spending freely seems to have been beneficial to Kris Carr’s personal journey.”
Another young woman commented:
“Page after glossy page, it makes cancer seem like more fun than it really is. Crazy sexy beautiful cancer babes? I’m all for empowerment, but cancer treatment makes you feel like utter garbage. I can imagine coming home from a chemo-vomit-fest at the hospital to open up a book filled with beautiful, thin, made-up, well-coiffed women (who, of course, have dashing, heroic boyfriends and husbands who always make them feel better) – only to feel that I don’t measure up. What, now I have to feel sassy and sexy when I’m being poisoned by intravenous drugs? How about a book for the rest of us, with our imperfect bodies and hairdos and our romantic partnerships with fallible human beings who don’t always save the day?”
This same reviewer said “There are plenty of reviews that rave about this book, and even those of us with lots of qualms and misgivings will concede that there are lots of good ideas and resources. But the last thing we need is to feel we don’t even measure up as cancer patients.”
I know what she means… There are a lot of good ideas and inspirational thoughts in the book, but I think I could have appreciated an occasional morsel of “and this is how it is on a very bad day”. Maybe that’s what my friend meant when she called me Pollyanna…? Perhaps at that time, I was only perceiving the good stuff…?
Finally though, I had to laugh when I read a review which simply said… “And it’s okay to be a Crazy, Cranky, Cancer Bitch!” Abso-flippin-lutely!!!!
Anyone interested can visit: Crazy Sexy Cancer
If I did a blog, I think it would end up silly!
When first diagnosed with a variant of Lupus, I totally freaked but then I got used to it. However, this getting used to it process involved a mass of on-line and book research. I even e mailed a bio chemist in Thailand and got a useful reply. From this I developed a personalised self-help regime. I’m not big on touchy-feely stuff – but any way to avoid stress is crucial. My self help is largely a mixture of vegan diet, vitamin regime and a bit of amateur chemistry chucked in for good measure. When doctors told me that the drug they recommended me to take for ever (pharma companies cheer) may cause blindness – but they did not really know how it worked anyway – I figured I could do better than that myself. Lots of info and choice – that’s what I like.
If you did a blog and it ended up silly it would be absolutely perfect and no less than what I would expect from you.
Maybe the times and trials of a Hectic Egg? You could drop in the odd bit of lupus-induced self-treatment and teaching anecdotes…?
Go for it! x
I am honoured to be counted among your posse! It’s invaluable having understanding confidantes to share the ups and downs with. I love reading your blog. It’s a fantastic contribution to make at a time when many would feel totally stuck for words.
Lots of love, Rhiannon
I’ve not got it, but Mike my husband to be (tying the knot June 14th.) has. We have found the support given by other Myeloma sufferers and their carers invaluable. One friend we have made is Paula, she has a blog here: http://feresaknit.wordpress.com which you might like to have a look at. 🙂
Im really glad you liked the book Jet.
I met Kris and her husband in 2005 and for a while we wer talking to them about co-producing her film.. it didn’t happen that way possible for the best as she has really done very well in terms of getting her message out and I feel it’s done a lot of good.
glad it was well received.