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!

wives

I met a woman last month who shared a story with me that she couldn't seem to forget, no matter how hard she tried. She had no idea why it was sticking with her, she said, but it haunted her every day. I know exactly why it haunts her, and you might, too. The woman who told me this story had already provided all the clues necessary for me to know why it disturbed her so - and she didn't even know it. We were in a little gift shop in the midwest, I was there for work, she was there for fun. She didn't come to the store alone that afternoon; her husband was there with her. Sometimes, he comes in alone, the shop owner told me. Just once or twice a year, when we wants to surprise her with something special. He never knows what to choose, so we always spend as much time as he needs to help him out. :) They are both in their late 70's, they had obviously been with each other longer than they hadn't. She had a slow pace to her walk, and I believe it was a bit painful for her to navigate the narrow aisles of the shop. She did so slowly, deliberately, enjoying each little display and item. Behind her, however, was the true heart of the story. The reason that what she simply could not forget what she had seen and was so desperate to tell me. The answer was her husband. I talked with this woman for at least 40 minutes, and had seen her in the store for well over an hour before that; but I never once heard his voice. She did, of course, as every conversation was a quite and personal chat, heads close together. They laughed together when they were looking at some little plaques with funny messages, and they delighted in pointing out the particularly sassy ones to each other. She obviously thought the world of this quiet man, and often would take her hand off of her cane just to touch his elbow. When she came to talk to me, he stood right behind her. At one point in the conversation, he tucked in the tag to her coat and then gave her shoulder a quick rub. That said it all, to me. That little motion said everything I needed to know about both of them. She exuded confidence, serenity, peace. Part of that, maybe most of that, came from him. The way he treated her, the way he looked at her, smiled at her. She never even turned around when he tucked in her tag - most of us would have spun around to see who was touching us - but she didn't. The little way he ran his hand across her shoulder immediately told her who was helping her out, although I'm sure there wasn't much doubt anyway. I'm pretty sure he had been on her six for decades, quietly taking care of the woman he so clearly valued so highly. Here is the story she told me, and she did so with tears in her eyes. They had taken a day trip to another state to see an old church. A friend told them that it was an historic and architectural gem, really worth seeing. They spent an hour or so admiring the building, then went to the gift shop to get a postcard. 'We don't take a lot of photos that our kids won't want to plow through when we're gone', she said. 'We just like to get post cards and write something on the back that tells them we thought of the place. Plus, sometimes postcards go for quite a bit on the Antiques Roadshow!'. At the post card display they met another woman, they had assumed she was alone. The woman was about their age, and told them she was going to get these for her grandchildren. She had four of them in her hand, and they were ten cents apiece. Four. They had been talking for just a few minutes when a man stormed into the shop and over to their new friend. He demanded to know exactly what she was doing, why she was still in this church. 'I just want do get these for the grandbabies, they love old buildings', she told him. He told her that, in fact, she was not going to get them. They don't spend money on stupid trinkets. No one wants her gifts, anyway. She was to get in the car, right now. Then he ripped the purse from her hand and marched to the car. She was left alone. Humiliated. Without recourse. Sad. That's why the first woman could not forget this story; because she didn't know that people like that existed. We all read the papers and see things on the news, but for a few people, that is the only time they see true evil. They don't encounter it quite so closely, and for their sake I am thankful. The lady talking to me couldn't even fathom what the other had been through. Years, decades actually, of humiliation, shame, constant grief. Did she start that way, we wondered, from childhood? Or had he eroded any sense of worth over time? My lady lived in a world so far from the other, it might just as well have been a fairy tale. She will never know what it's like to wear that abject pain like a daily sweater. To know when you wake up that there is someone right beside you who feels you are a liability and not an asset; yet somehow feels she had just enough worth to do menial labor for him the majority of her life. So forty cents worth of postcards brought this sweet lady over to me to chat. I was so blessed to have met the woman who's husband stood beside her and helped her make her forty cent selection, but my heart still aches for the woman who wasn't 'permitted' to get hers. I have three daughters, and I know exactly which husband I pray they find. I have one son, and I also know exactly which husband I pray he will be, too. I want them to have those little gestures in their lives, the knowledge that their spouse is right behind them, tucking in their tags and then a quick pat on the shoulder so they know they aren't alone and all is well. That they don't have to be afraid to trust them completely, that they can go forward in confidence because they are being supported. I am sad for the lady in the church, and now I can't forget her, either. I'll never meet her, never see her, never be able to give her money so she can buy those postcards. My heart aches for her perpetual heartache. But I am thankful that I met my lady in the gift shop. That she felt compelled to share her story with me - and I don't mean the church story. I mean the story of her life; the one he shared with me by not even saying one word. :) clothe yourselves with compassion, kindness, humility, gentleness and patience...Colossians 3:12