Everything Changes - The Guide to Young Adult Cancer

Most of us need insurance, money, and love to make it through cancer.  But what about the smaller, less conspicuous items that helped you through the medical and physical challenges of surgery, chemo or radiation?

On my blog I often write about the emotional impacts of cancer, but today I’m all about the practical physical side. Most patients discover small must-have items, clothing, food, or paraphernalia that helped us to physically manage daily life. Here are mine:

1. Zip-up hoodies – I couldn’t lift my arms over my head to put on a shirt after surgeries for thyroid cancer

2. Paper cups and straws – During surgery they dug around in my neck and shoulders. So sore in that area, I couldn’t lift a glass or mug to drink but paper cups and straws saved the day.

3. Pillows – A mountain of pillows, even big couch cushions, were great for propping me up in bed and taking pressure off my neck.

4. PB Sandwiches – Unable to eat packaged or restaurant food while on a low iodine diet (pre- radio-active iodine treatment),  a friend baked loaves of no iodine bread and I popped zip lock bags of peanut butter sandwiches into my purse whenever I left home so I wouldn’t be stranded without food.

5. Friends’ Old Clothes – There are strict protocols for washing clothes after radio-active iodine treatment because sweat makes them contaminated.  Friends gave me five days worth of old comfy clothes they would have donated to Goodwill anyway.  I chucked them in the trash after wearing them. No laundry and no clothes with bad memories.

Pick your top five items (or more if you’d like) and leave them in the comment section, noting the kind of cancer you have and what your treatment or surgery was.  Don’t worry if someone already mentioned one of your favorite items – duplicates only reinforce how necessary and helpful the item is.

For more practical tips on coping with cancer, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

In the midst of radiation treatment my home was like grand central station with visitors coming and going all day long. I needed the help and the company, and was grateful to have people stopping by.

But for some patients, having visitors isn’t as easy or welcomed. Many folks don’t want anyone around when they look and feel like crap. Others want privacy and alone time. And lots of guests just don’t know how to behave in the best interest of the sickie.  So, I’ve come up with  a list of  tips for both patients and visitors:

For Patients

- Nobody is a mind reader. Email friends and family about your wishes.
- Think about who you are willing to have see you at your worst.
- Let people know if it is not okay to visit at the hospital or at home.
- Clearly broadcast your energy level and the length of visit you’d like.
- Demand people stay away if they have germs.
- If you’ve got a roommate or partner get clear with each other so if you have different desires you don’t send mixed messages to guests.

For Visitors

- Have awareness. The goal is to be helpful, even it means staying away.
- While visiting, ask what you can do to help out around the house.
- Sometimes help without asking. If the trash is full just take it out.
- Never stop by unannounced.
- Don’t overstay your welcome.
- Silence can be comforting. Offer to sit together without talking.
- Think about visiting with the sick person’s kids, partner, or caregiver allowing the sick person time to just rest

What are some of the best and worst stories you have about people who visited you when you were sick? Do you have any tips to add to the list?

Check out more about the dynamics of family and friend visits in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I spent my first month of cancer trying to weasel my way onto COBRA. (Check out the podcast from my interview on yesterday’s Fresh Air with Terry Gross, where I talk about this and other young adult cancer issues.) One of my tactics was pulling the cancer card with COBRA phone representatives: “I’m 27, I have cancer and no insurance, pity me.” It was life or death and I was shameless.

Pulling the cancer card so early on in my diagnosis initiated me into the world of asking for help from others. And I got pretty good at it. But, most other patients I interviewed in Everything Changes told me that asking for help crushed their pride and amplified their lack of independence. Listening to these other patients, I started feeling guilty over not feeling shameful about asking for help.  Had I spent my whole life as a louse in disguise? Was cancer the ultimate chance for me to be waited on while I ate bon-bons?

Hardly. When I was diagnosed I lived in an isolated studio apartment in a rough neighborhood with no amenities. My laundry was down three steep flights of stairs in a garage that looked like a crime scene from Law and Order. There were no quick trips to the grocery store, no roommates, partner, or next door neighbor asking to pick up prescriptions for me. The only way I could get my needs met was by asking people to go out of their way to help me. There was a familiarity to it all: I had spent my childhood watching my grandmothers shuttle chicken soup across town to whoever was in need.

My second radiation treatment was the height of my helplessness. I was so weak I asked a guy friend to walk me to the bathroom. He had to prop me up on the toilet as I peed. While my extreme illness sucked, there was a small benefit to being humbled in this way: it reminded me that I’m human and I cannot make it alone.

What is it like for you to ask for help from others? Have you ever refused to ask when you really needed it? How do you handle it when people cop out, say no, or don’t show?

For practical resources on how to build and manage a your support system, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My healthcare motto as of late is quit bitching and start thinking.  Yes, the health care system sucks and we need to vent about it big time.  But, we also need to learn how the system and its players work so we can use them to our advantage.  We cannot do this if we think patients are never to blame.

In my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, I write a lot about how I and other young patients have wrangled the system, fought like hell, and got the care we needed. You can’t win these battles by only thinking like a patient; you sometimes have to think like a doctor.

Last week, Kevin MD posted about patients who annoy their doctors.  A commenter complained about cancer lit that suggests patients bring a friend or family member to appointments because it turns the appointment into “a side show.”  Instead of getting in a defensive-patient tizzy, brewing up an us patients vs. the rest of the world rivalry, I thought I’d try to see if there was value in the comment.

I want my doc to absorb my medical history, perform a good hands on exam, and answer my questions, all in 10 minutes. So maybe the maxim shouldn’t be ‘bring a friend to appointments’ but bring a friend who is medically astute and a skilled communicator. Is it really helpful to have a flighty chatterbox with me in my appointment, who will distract and annoy my doc?  I think not.

Tonight on the Stupid Cancer Show, Matthew Zachary and I will be interviewing Wendy Harpham MD, a mom of three and general practitioner diagnosed with cancer at 36.  Her great new book, 10 Seconds to Care: Help and Hope for Busy Clinicians, helped me better understand the pressure cooker in which my docs work and the ways in which I can actually make their jobs easier.  Considering that their job is to save my life, I’d like to help them all I can.

Are there times when empathizing with your docs works to your advantage?  Do you ever read doctor blogs?  Have you ever brought someone to an appointment who actually made the process more complicated rather than easier?

For more stories about how to be an effective, proactive patient, check out my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, available wherever books are sold.

“What’s the right way to thank friends for their help and to show my appreciation?,” asked Garnet, a survivor, in the comment section of my last post (Cancer and Friendship). Her question evoked the words of Richard Acker, a 36-year old stage 4 colon cancer patient in my book.

“When we receive help, it is clearly benefiting us, but it also gives some benefit to those who are helping us. They feel good, it makes them happy, it helps them to express their love for us in a concrete way.”

I agree and believe that when you receive help while you are ill, you don’t have to do anything other than say, “Thank you.”  I haven’t always followed this rule though.  Especially after treatment, when I made big thank you gestures - mostly in the form of dinner parties where I unleash my inner Barefoot Contessa.  My desire to thank came not only from my genuine gratitude, but also a bit from the guilt of feeling like I was an imposition, and a tad bit from shame that I needed help to being with.   Thank you gestures made the help I received into something reciprocal, which made me feel less like a sick cancer patient.

But I’ve come to think of that attitude and the need to do something thankful as bullshit.  Why?  Because I AM a young adult cancer patient and I WAS sick. This is not an equal, reciprocal exchange.  When we are down and out we need help.  When I graciously accept assistance without reciprocating, I am humbled and reminded of how helpless I am sometimes.  This is not a bad thing.  In my eyes, this is part of getting real with what it means to live with cancer.

When I do something for someone else in need I don’t do it because it makes me feel good or because I want something in return.  I do it because I love someone or care about helping to alleviate suffering in the world (that sounds kind highfalutin but it is true.)  When someone helps me, I hope this is also their motive.  Now, when I’m sick and need help, I simply show my gratitude by saying “Thank you,” it feels really right.

What is it like for you to accept help?  Do you ever feel guilty doing it?  Do you feel like you have to give back and do something?  Does it make you feel weak to accept help or does it empower you to recognize your limitations?  Have you ever done something for friends and family to thank them for helping you during an illness?

As young adult cancer survivors we big time need to kvetch about our friends who say stupid things to us (like: “In a way you are lucky you have cancer because now you don’t have to worry about whether you will getting it.”) But do we also spend enough time praising and gushing about our friends who totally understand us?

On Monday, Tara Parker-Pope referred to an article from the Journal of Clinical Oncology March 2006, which studied 3,000 nurses with breast cancer and showed: “Women without close relatives, friends, or living children had elevated risks of breast cancer mortality compared with those with the most social ties…. Neither participation in religious or community activities nor having a confidant was related to outcomes.”

When I was diagnosed, I sat on my bed and told my friend Nicole.  She shed all pretense and sat and cried with me.  It was the best response to my cancer I ever had.

During my treatment, Rachel, a casual acquaintance, adamantly wanted to help me with my mounting housework. A busy woman, she multitasked and on a first date brought the guy with her to my apartment to wash dishes. She threw a dishtowel at him and told him to dry.  They were not together long,  but she and are now close friends.

My friend Heather is amazing. Once when I was having a weird cancer period, she let me show her my used pad so we could talk about the color of the blood. Friends don’t get better than that.

Lifting loads of laundry to keep our staples intact, scrutinizing doctors for us, letting us cry into the phone so we can sleep better at night and fight our fatigue. This is what good friends do. I don’t know if in every instance friends help reduce our mortality rate, but the good ones sure as hell can improve our quality of life.

What great things have your friends done for you during an illness? Who has made you feel less lonely, more loved? (Do I sound like Delilah yet?) Who is by your side when your health is grizzly and you are freaking out? Has your support ever come from unlikely friends, or people who you weren’t that close to before cancer?