The Acentos Review

What to Say

What I have learned over the last year, with the diagnoses of two serious cancers in quick succession, is that I am blessed to have the friends and family members who are present in my life. They don't give up on me and they deal with my despair and surliness. If there is someone in your life dealing with a serious diagnosis, here are some words of advice.

What might be helpful-

Don't stay away. Show up. No, you may not know what to say, but the patient is in the same boat. Knowing you care enough to stumble through a call, or a text or an email, will mean something. Ultimately the people who make a difference in the patient's life are the ones who show up over and over and over again. You can help by supporting the patient to deal with her despair, pain. Her life will never be the same again. She is dealing with that. However awkward it may be for you, it is much worse for the patient. So ask your friend or family member, how can I help, what can I do, should I send you some brainstorming ideas of how I think I can help.

Accept  there are times when the patient doesn't know what she wants. But ask her anyway. And ask often. (Unless of course, she tells you to cut it out.)

Realize what works one day may be the wrong move another day. Give her the leeway to ask you for different kinds of support on different days and some days just deal with her being cranky.

Don't take it personally if she blows you off and doesn't respond. Accept that on some days the patient may not feel well enough mentally or physically to answer you. So be patient. But be persistent. Don't go away. Try again the next day or the next week.

What to talk about with the patient? Yeah, it is hard. Awkward. Painful. But figure it out. Maybe she wants to tell you the details of her health appointments and how awful chemo is but maybe she doesn't. Take your cues from her. Maybe all she wants is to hear about your life and not talk about herself. And other days, she may want you to understand the science of her condition in excrutiating detail.

Devise your own method of staying engaged with the patient. Be it sending frequent, goofy snail mail postcards, sending frequent emails, texting often, or calling on the phone. (This is a no-no for me, I do not want to talk on the phone to anyone but my Mother). But the point is that each person is different, you can keep contact in different ways, and there is no one right way to stay in touch. All the traditional methods might work too: send flowers, chocolates, cookies, cook a meal, send a card. An occasional surprise will tell her that she is in your thoughts often. Text daily haikus, send books that have inspired you or you think she will like, play online word games with her if that is what she likes.

Let her ignore you one day and then send you desperate, frequent and talky texts the next. Her emotions are fragile, labile, ever-changing.

Track her appointments, send her encouraging words. Unless she tells you not to. See if she likes hearing from you the morning of chemo, during chemo, after chemo, two days after chemo, three days after chemo. Ask her, yes, but figure it out with her and be flexible to change. Just keep on telling her you care and think about her and pray for her. And keep the contact going after treatment ends.

Some things that may not be helpful-

It is not helpful to group the patient with others in your circle of family or friends and tell them how you are the 4^th person close to you diagnosed with an awful disease. Yes, you are trying to relate, but how does that possibly help? Hearing that you know of others with serious illness or who died last year at the age of 47 doesn't help. It. Does. Not. Help. It is clueless and demonstrates to the patient that you see the world so tightly from your perspective, that you can't put yourself “in her shoes”. You give off vibes that she is but an additional anecdote in your life.

Don't tell her you know someone who went through chemo and it was a piece of cake. Terrific for them. But unless you know your other friend received the exact kind of chemo drugs she is receiving, it is not helpful. And anyway, each patient reacts to the chemo drugs differently. However, speaking to someone of their experience with chemo (regardless of whether they are the same meds or not), may be helpful.

Don't stay out of touch for months and then get back in touch and explain how busy you have been with work, or the kids, or the amazing vacation(s) you have been on. You may mean well, but the patient may feel like she is but an item on your list, an item to check off every couple of months so that when she dies you don't feel guilty you didn't stay in touch. It doesn't show that regardless of how busy your life is, and messy, and complicated, tiring, exhausting; she matters enough to you that she is on your mind. And you show it by that frequent email, text, or card. But if you have been out of touch for months, that is not a reason to stay away. Contact her. Just tread slowly.

Listen to the patient carefully. Take your cues from her. If you ask about her prognosis and she clearly doesn't want to talk about it (which you should be able to pick up by her silence, mumbling words, changing the topic, or by point blank telling you ”I don't want to talk about that”), then respect that- AND STOP ASKING. She will tell you if and when she is ready. Your repeated questions can come across as ghoulish- there but for the grace of God stuff. It is not helpful to the patient.

Please don't tell the patient that “all will be alright”. No. It. Wont. Yes, she needs to figure out how to live life every day and retain faith and believe in miracles. But she has to figure that out with your support.  It sounds so trite and heartless to say- it will all be alright. You just come off as being clueless, and it can hurt.

This one is darn super important. Don't try to vaguely blame her for her illness. Just don't go there. Don't delicately suggest that being a high stressed individual, or not eating meat or drinking too much diet soda, or not practicing enough medidation might have something to do with her diagnoses. What if they do? What are you trying to achieve? Are you trying to make her feel worse than she already does? She has the cancer(s) now, there is no going back. Do you want to help her? Then see the advice above.