Rights

(photo courtesy Archives.gov, one of my favorite websites)

Social Rights for Cancer .... People 

(one woman's perspective) 

Once you are diagnosed with cancer, you immediately inherit a brand-spanking new group of inalienable rights. At least, you should. Here are some thoughts from someone who has been a caregiver/patient/advocate/observer/concerned friend for a good bit of time. 

You get to choose your title. 

Probably not "Tsar" or anything like that, but now that I mention it, sure. You can call yourself a Tsar. Or patient, survivor, thriver, pink, warrior, hero, fighter, flower mama, fragile patient, stalwart trooper, pink power mom, angry advocate, sparkly unicorn cancer princess - it doesn't matter.  You can call yourself wizard for all I care.  This is your trek, you own the rights as if you are a member of the Plantagenet dynasty.

Scars.

Show them. Have them photographed, gloriously, and put on giant canvases for a world-wide gallery tour. Because, beautiful! Or hide them, cover completely and make your cancer your own business, for no one else to know. Your path, your choice, your decision. Social media should bow to your options if you choose to share pics of these bad boys, too - remember, you are now fully titled. 

Hair.

 Rainbow Afro Wig? Yes, please.  Bald with a henna tattoo?  You betcha. Scarf, ballcap with little fake bangs, motorcycle helmet, skullcap, lace doily? Okey dokey. Not one single thing except your shiny head? Yep. The general non-title cancer society is permitted to say only one thing when observing your new choice of headware: "you look amazing!".  That is all. (Please note: when you compliment us on our wig by saying something like 'gosh you can hardly tell that is a wig' you automatically identify the fact that we are sporting a horrific wig, like some gaudy toupee. So stick to the 'amazing' line.)

Treatment.

Are we making morning smoothies with magic pond scum from Madagascar as part of our holistic therapy?  Maybe.  Our decision, not yours. Do we know that chemotherapy/radiation/everysinglething under the sun is toxic?  Yep.  Do we want to hear it from your mouth? No, unless you are an oncologist.  More specifically, our personal oncologist. Have we tried yoga, did we know that your sister/aunt/cousin's step-dog became miraculously cured after visiting a special doctor in Mexico?  Good on 'em, but really, unless we specifically say 'hey, can you tell me everything you've ever heard about cancer', please don't.


Friends, we've really tried to talk to our docs and nurses about everything. The icky, hard, awkward and downright embarrassing things.  Sometimes we even email them at 2 am if we hear about some new miracle drug and want to learn more.  We live this stuff, so there are very few things you might tell us that we haven't heard before.  BUT please know, we love that you try. That you want to help.  And we understand that you might just not know what to say, or how to help.

For that, I respectfully guide you to a handy-dandy list of things to do to help us.

Sincerely,

Heidi.  (my title: Pink Floyd)

TIRES

I had very little time to spare this morning.  Very, very little. Conference calls, meetings both online and in person with fellow cancer warriors, grant requests, you name it; busy day.  You know what I didn't have time for?  A flat tire.

And yet, there it was, in all of its deflated, morose glory.  I searched around for any suspicious compliments to get to the root cause - I'm a set of rubber gloves away from becoming a forensic specialist on this tire.  WHO did this, WHAT did they use, HOW can I enact swift justice? I'm now arguing with myself, as is my daily habit. Who cares, Heidi, just fix it you-have-a-10:30 call so move it!  As my self contained arguments are just that, it appears from the outside that I am just quizzically looking at my tire.   Which prompts a sweet lady to come over and say, "You know, don't you, that you are 1/2 a block away from a Canadian Tire?  And while you wait, you could go to the Tim Hortons in the same centre.".  Poof, just like that.  Tires and donuts to the rescue.

Off we limp, me and the atrophied tire.  Both of us feeling sorry for ourselves and quite put-upon for the inconvenience (speaking on behalf of the tire). Canadian Tire, for those of you not in the 'know', is a cornucopia of retail, including items far beyond the simple tire.  You could peruse for hours and not see it all.  Socks! Frying Pans! Vacuums, boats, car seats and Giant Posters of Jonathan Toews! (yes, of course I bought one of the items on this list.  Don't be ridiculous.) But the tires are the big draw.  I can tell you this due to the wait line at the tire counter.  "You're looking at a good 2 hour wait", says the helpful young man with an impressive set of fuschia gauges in his earlobes "but there is a Tim Hortons right across the parking lot".  I'm now mentally noting that I need to research the cross-corporate investing connection between these two behemoths. 

To protest my self-pity, I punish myself by NOT going to Tim Hortons, even though I can see it is cheery, sunny and I can see them taking out fresh muffins as I stand in the tire line.  My mea culpa takes the form of sitting in the Tire Waiting Room.  So I park it in a wicker lawn chair (on sale today!) in the waiting room and attempt in vain to connect to the wireless.

And in comes Rosa.  She see the other 10 vacant seats, but decides to park her walker right next to me, and enjoy the other wicker chair.  Clearly, we share a mutual love for sturdy outdoor seating.  She starts to talk to me, and I realize this is yet another moment to just sit back and let the goodness that is about to unfold just wash over me.  It happens to me now on a fairly regular basis, I'm pleased to report. Once I stopped to truly witness the beauty in the world, it's as if I am incapable of not seeing it everywhere.

So Rosa doesn't even put the parking brake on the walker before she tells me her story.  She's 87, and left Italy during The War.  There was a bad, bad man ruling her beloved country during that time, did I know about him?  Yes, I reply.  My family is German; we, too, had a miscreant running the show for awhile.  She liked that answer, liked it a lot.  She reaches over and grabs my hand. "I'm going to hold your hand because you are a very good girl, I can tell".

She: "My daughter, over there, is getting tires" Me: "Ah, me, too"  She: "You know, she has The Breast Cancer." Me: "Ah, me, too" She: "It makes her very tired, but every day keeps fighting." Me: "Ah, me, too" She: "We thought she might die, but she was sure she wouldn't - not yet anyway". Me: "Ah, me, too". She: "You know, my daughter says that its not her, but Jesus that is doing all the fighting really".

So it's at this point that I ask Rosa if I can take a photo of her hand.  "Why?" she asks.

Because, sweet, wonderful Rosa.  Because you have lived through inconceivable hardship.  You fled a country at age 11 after watching family members die.  You persevered though fear, intimidation, poverty, and loss.  You lived a strong, beautiful and faithful life and gave the world 2 beautiful daughters.  You support and love your daughter through her cancer journey, and you are unashamed to say the words "I love Jesus" in a tire store. To a stranger.  I want to take your photo, I told her, because of those things.  I want to tell people about you.  When I feel like I don't have time to appreciate the little everyday things, I want to look at this and remember you.

And remind myself that even a flat tire can provide great joy.

VOICES

I don't remember my mama's voice. That doesn't sound like much of a big deal, does it...but I can't just pick up the phone and call her; she's been gone now for quite some time. I have a little teeny tiny bottle of her perfume, and when life gets just crazy awful, I take it out and just take a sniff. She didn't wear it often, as it was quite expensive and came from Germany. She used it sparingly, only when she went out on rare occasions with my dad. I have some photos, of course, and she's always the one who looks like Laura Petrie (google that, young ones). But I don't have her voice anywhere, on anything. We didn't own a video camera or movie recorder at that time, so nada. The now constant stream of emails, phone calls and various other communications I receive from people saying 'I have a sick friend, what can I do to help?' now includes a little paragraph that says RECORD THEM. Yes, they will probably get better, but do it anyway. I recorded myself singing for my children, all the songs I usually do a bedtime. Well, I still kicking around here, but let me tell you, those little cds get a lot of play. When I travel, my kids use them to go to sleep. There are gobs of things you can do to help someone in treatment. But please keep this in mind: treatment isn't just chemo infusion. Patients struggle for YEARS afterwards, physically, financially (!!) and emotionally - they could use this help at any time!! Here's my hand-dandy-go-to list for helping any kind of illness, but it's been specifically tailored for breast cancer. Please let me know what you think!

CAREGIVER SUGGESTIONS

Mastectomy aftercare:

· Button-front pajamas, long sleeved (she will be sitting up in bed quite a bit, so will need to stay warm on top. Won’t be able to lift her hands, so pulling on a shirt over her head isn’t an option.)

· Tall, reusable thermal cups with lid and straw (again, lifting hands to any degree will be difficult initially. This will make sipping drinks a bit easier)

· Serving tray (to sit beside her on the bed and hold remote, cup, glasses, phone, etc)

· Pashmina or light sweater (one size larger then she would normally wear)

· New movies for her to watch – make them funny! She’s got plenty of serious stuff going on, she doesn’t need to see it on her television.

· Childcare. She will be out of commission for anywhere from a few days to a few weeks. If you have a group of people helping with little ones, make sure she has a detailed copy of the schedule and what you have planned. Have it printed and right beside her in bed so she always knows everything (i.e., Mary Smilth taking kids to the movies at 4:30, then out for pizza. Will return home by 7:30). Needless to say, these should only be people she trusts implicitly and that they get pre-approval for all activities. Dietary restrictions for the children, movies that might be too scary, things at the zoo that she would prefer they not do, etc all should be discussed while creating the schedule. Mealtrain.com and carecalendar.com

· Animal care. Don’t forget her pets, if she has any. Cats and dogs (especially dogs, of course J ) might have a very strong reaction to a member of their family being so ill. Make sure that the same kind of schedule as suggested for the kiddos is maintained and available for her to see. If the pets are quite young, they might be tempted to jump up on the bed with her and that just can’t happen. If a little sleepover time with a dear friend is required, then so be it. Just as long as they are cared for with love, she will be happy.

Chemotherapy/Radiation care:

· Warm, tight fitting (soft!!!) knit cap. Being bald at night makes you more cold than you can possible imagine. She will need to cover up that noggin to make sure she stays toasty.

· Silk scarves, or hats - pretty. Bald is hard. Help her out.

· Thick, warm socks, pashmina, sweaters, etc. Chemo makes you cold, too, so this will help her not only during infusion but for the rides to and from. Does she have good winter boots, if applicable? She will be moving slowly and getting in and out of the cancer center might take more time, so make sure she has proper gear for snow, rain, etc.

· Unscented lip balm and lotion. These treatments are very harsh and drying , but she wont be able to tolerate heavily scented items. Unscented is best!

· Tote bag. She will be given so many items every time she visits the center and for check-ups, this is quite important.

· Journal. Not for her thoughts, but for practical reasons. Have her write out ALL questions she has for the doc, and then leave room for the answers. Memory will be a slippery commodity during chemo, so this will be a great reference point. Have her use the first for pages for her specific diagnosis, treatment plan, doctors info (including emergency number), etc. This will be a handy guide for anyone lending her a hand as well – a pick up and go reference with all you need to know.

· Emergency card. Her specific diagnosis, doctors info and all medication she is on, including infusions, should be listed on a small card. Have 2 copies laminated, one to carry with her always and one to have taped to the dash or window of her car. If she is in an accident, this will be helpful for the medical staff assisting her at the site.

· Meals for her family, child and pet care. See Mastectomy post care. Mealtrain.com and carecalendar.com are free resources to help get it all straight!

· Housekeeper. For the DURATION of her treatment and, by golly, maybe a year afterwards. She might say no, but force it. She will be exhausted and will have to spend more time than usual just doing chores.

· Powder room in her house – how does it look? I know it seems like an odd question, but she very well might be spending many hours in there during the rough parts of treatments. If it needs to be spruced/repaired/updated, see if your group of friends and handymen can help out with that. A nice teak seat for the shower is a blessing that she doesn’t even know she’ll need!

· Tell your community what’s going on, and think about her needs. This might be a financial devastation for her and her family; so look at what might help. Does she need a new washer, dryer, vacuum cleaner, oil changed in her car, new tires, coats for the kids? Talk to your local stores and ask if they will help donate or give a discount. Throw a fundraiser dinner for her bills, local churches should be willing to lend you their locations and perhaps even more. Auction items would be great, but ask them for 2 of each, one for the patient and one for the auction.

· RECORD HER/HIS VOICE. This is kind of crucial; odds are in their favor that they will recover and live a long, fun life. In the event that this is not the case, however, think about the people that are cancers ‘leftovers’. The ones who wake up everyday and wish they could just hear their voices one more time. Record them, video preferred, reading a book to their kids. Singing their favorite song. Telling their favorite joke – just being totally silly. It might help everyone!