The thing about facebook, friends, and cancer

"Does she not know that I'm dying?"

Those words stung like daggers in my heart. Recently, a cancer warrior told me that her friend stopped being there for her, a friend who she leaned on for support at the very beginning of her journey. She stopped checking in on her, asking if she needed assistance with anything or seeing how she was doing.  As she put it, her friend just "forgot" about her. Despite physically distancing herself from her, Facebook allows for passive communication. Her friend would post status updates and the cancer warrior could see bits and pieces of her life. And vice versa. Her friend felt like going to a movie. The cancer warrior felt like she was hit by a bus. It sounds horrible knowing that sometimes life just gets in the way. And some people just don't know how to divide their time. Still, it makes me wonder, why wouldn't she be there for her during the lowest point of the cancer warrior's life? Doesn't the word "terminal" mean anything? With all the technology we have these days, isn't it so easy to just to send an email or a text to see how she's doing? My heart ached for the sadness she must have felt. She was dealing with the reality of her own mortality, and on top of that, the pain of knowing that someone she counted on seemingly stopped caring. I'm sure her friend does care and feels so much sympathy for what she's dealing with, but actions speak louder than words.

For so many people with cancer, social media can be a godsend. It's easy to update friends about their current condition, find support, and even raise funds to help them with their journey. On the other hand, logging onto Facebook can make them feel even more alone.

As I sit in the hospital room, where I've been since October 6, I admit I get envious of people living it up, going to parties, going on trips, trying new food or recipes, etc. Facebook reminds me of the things I am unable to do. It also reminds me of the friends that simply "forgot." My time is taken up by massaging my mom's arm and legs, and trying to make them less swollen (using a "lymphatic drainage" technique). Whenever she needs to turn over, we have to use the bed pad to help swing her body from one side to the other, while making sure the IVs and catheter don't get in the way. My mom is literally swaddled with about 8 pillows on the bed, propping this limb or making sure she stays in one position. Getting her to the bathroom takes at least 10-15 minutes, propping her up and bringing her to the bathroom, while she's still hooked up to the machine. She gets up in the middle of the night about 3-4 times, so me and my brother take turns being on duty. We try to get her to walk at least twice a day. We try to get her to eat. About 4-5 doctors stop in to check on her and update us on how she's doing. And in between, I try to get my work done. That is my life.

On Facebook, I see people complaining about trivial matters and I think, if only you were in my shoes. I see people use the word "cancer" as a horrible analogy or using it like it's a bad word, and I wish I could smack them. Like someone posting, "Your poor grammar is giving me cancer." Others post about relationship troubles and I think, if only that was the worse thing in my life right now. Most hurtful of all, I feel let down by the people I'm closest to when they seem to have time to post about a recent activity or adventure, but won't text or email me to see how I'm doing. It takes literally 10 seconds to say "I'm thinking of you."

Maybe I'm bitter. Ok, not maybe. I just am. And I struggle to wonder why this hurts me so much. In the grand scheme of things, I should not care about those who are not there for me, and just care about my mom. But I just wished that people who not are dealing with cancer would know how meaningful it can be when cancer warriors and caregivers really feel the love from others, rather than a half-hearted "let me know if you need anything." What's worse is when I actually reach out and I get no response.

What People with Cancer Want You to Know

From the book, Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope. Sadly, the author passed away recently from lung cancer. Here is her obit. 

(I also added some of my own 2 cents).

Six of the “20 things people with cancer want you to know”

- “It’s okay to say or do the ‘wrong’ thing.” [Just don't disappear because you're afraid you'll hurt me] - “I like to hear success stories, not horror stories.”
- “I need to laugh – or just forget about cancer for a while.”
- “If you really want o help me, be specific about your offer, or just help without asking.’
- “I need to feel hope, but telling me to think positively can make me feel worse.”
- “I don’t know if I’m cured, and bringing up my health can bring me down.”

Some of the top 15 things you can do to help (after you ask permission, of course)
- Set up a prayer or silent unity group.
- Bring animals to visit.
- Do research for the patient.
- Rub the patient’s feet.
- Send cards, postcards, and letters.
- Pay to have the patient’s house cleaned [or check out "Cleaning for a Reason"]
- Offer to clean out the fridge or pick up the mail during hospital stays (my .02)
- Offer to pick up food (my .02)
- Do something for the patient’s spouse or children.

Beware: a few of the 26 common words, phrases and questions that can sting
- “What’s your prognosis?” Prognosis is a medical term, and it is often associated with the word “poor.”
“Are you in remission?” Said one survey respondent, “The term ‘in remission’ indicates that the cancer is lurking somewhere in your body, and it is just a matter of time as to when it will return. It makes me anxious just to hear it.”
- “Pray for a miracle!” Although most people like to be prayed for, saying that they need a miracle implies they have a poor prognosis.
- “You’re going to be just fine.” As Dr. Lawrence LeShan said, “Don’t tell me things you don’t know anything about. Don’t tell me I’m going to get better, don’t tell me I’m going to get worse.”
- “You even lost your eyebrows and eyelashes!” Saying that to a person who has undergone chemotherapy can just make them more self-conscious.
- Before chemo: “You’ll have so much fun picking out wigs!” “Fun” is not a word most people with cancer like to hear associated with their disease.
- Don't ask how long I'll be on chemo for. Instead, ask what the treatment plan is. For many people with stage 4 cancer, they're on chemo for life or until they decide to stop treatment. (my own personal pet peeve)
- Don't ask how I got cancer. Just don't. (For the record, my mom did not smoke, drink, have diabetes, high blood pressure, or do drugs -another personal pet peeve)

Some of the 22 things most people with cancer like and want to hear
- “I wanted to hear that people loved me, that they would be by my side through this entire ordeal, that they would do anything at all that I needed, that they would be with me even if I didn’t need anything at all.”
- “Mostly I wanted to hear that they were concerned and loved me, that it mattered that I was sick, that I made a difference in their lives.”
- “I wanted and needed to hear: ‘I’m going to the supermarket. Do you want to come with me, or can I pick up some items for you?’”
- “I would have liked to have heard that it was normal to have feelings of depression.”
- “My husband said things that were comforting like. ‘It’s so horrible what they’re doing to you.’”