THINGS TO CONSIDER WHEN YOU’VE BEEN LIVING WITH CHEMO FOR A WHILE…

Part of thTHIS IS THE MOMENT series

October 29th, 2018

  1. Looking at your face up close in a mirror, like when you’re putting on makeup, you see the small ravages of chemo: the darker skin over your lips that looks a little like a moustache from a distance; the much deeper circles etched under your eyes that cause you to use a concealer stick for the first time in decades; the strange complexion you have that’s like an unhealthy tan but is really hyper-pigmentation caused by the chemo (which has made appearances all over your body too) ; your missing lashes and eyebrows, thinned to match your bald head that is now growing a fluffy, bristly down that’s as white as your mother’s was. The eyes that look back are knowing, and that brings you closer to yourself, and perhaps, to the knowledge that you’re stronger than you thought.
Kim, Jung Hyun; Face; Birmingham City University; http://www.artuk.org/artworks/face-32855

2. With everything that has been stripped away, you have never been more YOU. Accept yourself.

3. When you wear your beautiful, real-hair, expensive and stylish wig, no one can tell you have cancer. But oddly enough, you very often choose to leave the wig behind—which still feels like a disguise—and head out with one of the cool caps or beanies you thought to buy before chemo even started; before you lost a single hair on your head. The other day, at a local tea shop, the assistant greeted you saying: “Oh! I love your new haircut! It’s lovely!” and before you even took a nanosecond to think, you replied: “Oh, thank you! It’s a wig! I’m in chemo!”. You were surprised and a little dismayed to see her turn beet red from discomfort. That wasn’t your intention: it just came out that way !

You find that many things that once frightened you no longer do.

4. Your life is on a brand-new track. Your days have emptied out to make room for chemotherapy treatments and medical appointments, and tests, and rest, and recovery. In exchange for the loss of your ability to work and of such a big portion of your energy, you’ve been given lots of static time—the kind that allows for calmness, quiet, peacefulness, meditation, writing, reading, watching, thinking, listening, and just being. You’re more often alone during the day because you’re home, and you find that this solitude is mostly replenishing. You have never felt so little stress, so at peace. You can’t quite understand how this is so. You know it won’t (and shouldn’t) last. It isn’t life, but it’s your life right now.

Reuss, Albert; Woman in Chair; Newlyn Art Gallery; http://www.artuk.org/artworks/woman-in-chair-14926

5. Being open about your cancer and treatments, especially the way you have, with a series of blog posts, has not made you a pariah. Instead, it has opened channels with people you’ve never met and some you barely knew. It has deepened many friendships. It has given you AND others a different means of understanding cancer and its treatment, and of banishing judgement, isolation and misunderstanding. At least, that seems to be what you want and what others want too. You huddle with them, and it warms all of you.

6. During those low post-chemo days when you sleep, shiver, and drag yourself about, and know that your body is drained and struggling, it’s okay to submit to its needs. Your body is brave and tough and wants to get you to the end of this trial. It’s doing everything it can. Love it back.

7. The future is unwritten.

Munnings, Alfred James; Sky Study; The Munnings Art Museum; http://www.artuk.org/artworks/sky-study-4150

TENTATIVE CHECKLIST: how to best live with cancer, its treatment and its aftermath—some ideas

Part of the THIS IS THE MOMENT series at REEF.

One.  When the impulse comes to isolate yourself, resist it. You can give in at first, because maybe your energy or your blood count are low, or you’re in pain, or because you need the quiet and the rest. But not for long.

Powell, Joanne; Isolation; Royal Birmingham Society of Artists; http://www.artuk.org/artworks/isolation-29704

Humans who love you bring energy of the very best sort. They don’t always know that they’re also bringing the noise of the outside world that can make you feel despondent, or that you don’t feel able to deal with. They almost always mean to bring LOVE and to give CARE—a good meal, a hot tea, a movie watched together. Laughter. Companionship. Being seen and feeling connected. The things that make life worthwhile.

Milroy, Lisa; Doing, Thinking, Speaking; Arts Council Collection; http://www.artuk.org/artworks/doing-thinking-speaking-63895

Two.  If you feel low. If you feel lost in end-of-life thoughts, or fear, or sadness. If you feel purposeless. If you feel sorry for yourself (a totally legit feeling, in my estimation, in small doses). If you feel pulled out of time and unmoored…

READ A MATT HAIG BOOK.

This advice will fit most of the situations you encounter. Matt Haig is a lovely, British human being, husband and father. He’s also a prodigious novelist (7 times) and memoirist. Every book of his that I have read (3 so far) has been poignant and filled with such joy that he has changed the way I think about life. I’m convinced that he writes each one with this intention. The first one I read was The Humans (2013), which delighted me and left me filled with joie de vivre and also left me pensive. The second one was his startling memoir called Reasons to Stay Alive (2016) in which the reader learns about the author’s long battle with depression. The title suggests he was victorious. And, with The Radley’s (2010) waiting next to my bed, I’ve just finished How to Stop Time (2018). Anyone living with cancer will find this beautiful novel helpful. All of Matt Haig’s books leave the reader feeling replete, and of all of them, I think How to Stop Time may be the most touching and most likely to help you to keep thinking and feeling on a path without fear.

Three. Write. Keep a journal. Jot down your soul states or random thoughts or observations about the leaves falling; or the noisy truck that’s getting on your nerves; or how much you miss the real taste of food; or what made you blue just hours before; or what happy thought or insight you just had…

Write about a hobby, or something that interests you.

Make a list of all of the people you love and care about.

Make a list of the things that worry you.

Write about your pet.

Make a list of all of the foods and drinks you’ll gorge on once chemo or radiation are done.

Make a list of what you miss, then make a list of everything you would have missed had you not been on Cancer Hiatus.

Lucas, Caroline Byng; The Yellow Book; William Evans Bequest, Bangor University; http://www.artuk.org/artworks/the-yellow-book-177836

Four. If you’re like me, and tend or tended to wear the same clothes to chemo or radiation treatment all the time—in my case, the tops I wear have to have front buttons so that I can leave with an infuser filled with a chemotherapy drug tied around my waste that continues to pump its meds into me for 2 days— throw it out or give it a vigorous washing and then give it to NOVA or any local charity. I think that once that part of treatment and living with cancer is done, you shouldn’t wear its uniform. Make a fresh start. Buy a few items in new and different colours. Make the outside match the changes inside you, especially the changes in the way you see your life, and the way you see yourself.

Allen, Phillip Macdonell; Small Moments of Little Joy; Government Art Collection; http://www.artuk.org/artworks/small-moments-of-little-joy-27592

Five: Cancer’s aftermath

This isn’t really about the future. The future is unwritten.

This is about how far we’ve travelled so far, what we’ve become, what we hope for or know that we want from life.

Live in the now and try to live without fear.