My mom was first diagnosed with breast cancer when I was 19. After more than ten years supposedly in the clear, she was diagnosed with stage four breast cancer where cancer has spread to her lungs and bones. Two months ago – just as her hair was finally growing out – she returned for a fourth round of chemo as one of her tumors had grown by 30 percent.
Since my mom and my family has lived with cancer hanging over our heads for a long time, the dreaded “c” word in my family is not cancer but chemo. Her new round of chemo is already triggering emotional pain not just from what’s happening with my mom, but also from the current (and anticipated) reactions of the people around me.
These are seven things you should not do… ever:
- Don’t express support in religious language – Unless you know the purported religion of the person with cancer do not assume we want your prayers. For instance, “I’m praying for her” or “Sending love and healing prayers” really begs these questions - Who is your God? Do I know your God? Am I even comfortable with you asking your God for help? Your God could be Muhamad, Jesus, Mother Mary, Kuan Yin or one of the thousands of the Hindi Gods. If we know better than to impose our religion on anybody, why would we do so to people who are already in distress? Do ask: “I am a Christian who believes in Jesus. Can I pray for you (or your family)?”. Even better, just drop all religious references if in doubt and things along the lines of “Wishing strength to you and your mom” or “Sorry to hear that dear... hope things turn out fine for her.”
- Don’t use words like “cure” or “recovery” – When one says “Sending prayers of blessing and quick recovery”, do they even know what they are actually saying? Did they recognize the extent of the cancer? And the futility of a complete cure? Did this person think their omnipotent sentence will “cure” cancer? Do they know something the person living with cancer doesn’t? The impossibility of recovery will only frustrate whoever hears this. People with long-term cancer and their families who would have explored, studied and weighed all options, this flippant comment only aggravates – as if we are not trying hard enough for a complete resolution! We can only manage the spread of cancer – but cure? Please just shut up if you don’t know what you’re saying! Do banish all mention of “cure” or “recovery” when you don’t know actually know for a fact that it is on the cards. Do send well wishes instead.
- Don’t expect a pity-party in your honor – It’s incredulous how cancer survivors have this compelling need to tell their cancer story. Their sharing is less about my mom or me, and all about them. They devour our time even though it is not in our interest to hear every gory cancer detail. I am expected to affirm their strength, and reassure them that the worst is over. They need facilitated support or counselling – not “free therapy” from any willing victim, and especially not from already vulnerable families with cancer. What might be helpful is stating why you’re even sharing the story in the first place, and how you believe you are of help. “… therefore, I want you to know I can imagine what it feels like” or “I am sharing this because I empathise and I am available for…”
- Don’t tell other people’s cancer stories – How does hearing somebody’s cancer story help the person in any way? “My auntie just recovered and is recovering after surgical removal.” What is your real intention in saying this? What is one actually supposed to say to this? We don’t know your auntie. Sorry but we cannot afford to care about your auntie when we don’t know her, and especially when we are still the trenches. We have our own issues and we really need to focus on what we can do with the limited time and resources we have – thank you. Do share only what is beneficial. “My auntie found this useful during her treatment. Would you like me to tell you what she uses?”
- Don’t offer unsolicited advice – “Hey, your mom should try….” is a statement not a question. I’ve lost count the number of things people start talking about what ought to be done (or eaten) the moment cancer is mentioning, without even asking what had done or tried before sprouting advice. Almost all of well-wishers never ask for permission before giving advice. During the rare occasion, when they do ask if I want advice, I would politely decline only to have their unwanted advice dumped on me anyway! I wish more people were mindful of how much stress they are actually causing with their unsolicited advice. Do ask: “If she needs advice re diet then I am happy to help” and walk away if the answer is no!
- Don’t assume we know squat – Following the previous point, not everybody reject advice because of their own arrogance, stubborn or ignorance. It has to do with their own assumption that we don’t know, as opposed to the possibility we already know a lot more than you probably will ever want to hear or know. Mom and I don't want any advice (I make no assumptions for her. I've actually asked her before if she wants advice. She explicitly said no and to leave her alone - she really does know what to do!). Mom has made it her business to get educated and knows more about breast cancer and what to do than anybody I know. Do ask: “Would you like to hear about what my uncle found especially useful to him during his chemo?” and do wait for the answer! Sometimes, we may just want a time-out from cancer talk too!
- Don’t give half-ass help – Having asked for permission to suggest, don’t advocate this or that alternative treatment, drug or herb when you don’t have all the information. Why get our hopes up about something only for the lead to go dead or nowhere? For instance, suggest acupuncture but not giving the name and contact of an acupuncturist who specializes in cancer treatment is as good as not saying anything. Do tell us what exactly it does, where to get it, who to go to, and how much it costs. We appreciate having one less thing to handle all on our own.
Much of what I’ve shared above revolves around consent. As a sexologist, I see consent as not applying to sex - it's in everything we do. Yes is yes. No is no. When I shared on Facebook about my mom going for chemo for a fourth time, I had three people give me unsolicited advice. While I am grateful for their concern, they fail to recognize that my sharing what's going on with my mom didn't mean I want advice (in fact, I actually stated in the post I didn’t want any advice).
I hope my sharing this will allow for more awareness and mindfulness when it comes to truly being helpful. Thank you.
Who is Martha?
Founder of Eros Coaching, Dr. Martha Tara Lee is a Clinical Sexologist in Singapore who has a doctorate in human sexuality. She also holds certificates in counselling, coaching and sextherapy. In practice for seven years now, she is the only certified sexuality educator by the American Association of Sexuality Educators, Counselors and Therapists (AASECT) in Singapore. This accolade is only for those who meet the stringent requirements determined by AASECT, which is the leading professional organization for sexuality educators, sexuality counselors and sex therapists in the United States.
Often cited in the local media, Dr. Lee is the appointed sex expert for Men’s Health Singapore, and Men’s Health Malaysia. She was recognised as one of ‘Top 50 Inspiring Women Under 40′ by Her World in July 2010, and one of ‘Top 100 Inspiring Women’ by CozyCot in March 2011. She has published two books: Love, Sex and Everything In-Between, and Orgasmic Yoga.
Martha works with individuals and couples in private coaching sessions, and conducts her own workshops. She takes prides in making sure all her workshops are also fun, educational, and sex-positive. This comes easily to her because even though she is extremely dedicated and serious about her work, she fundamentally believes that sex is meant to be fun, wonderful, amazing and sacred. As such, this serious light-heartedness has shone through again and again. You can read the testimonials she’s received over her seven years of practice here. For her full profile, click here.