March 17, 2014

Cancer Etiquette

Cancer changes you. My career is on hold. Future plans have to be more carefully thought out.  My diet has completely changed. A lot of my free time is now focused on cancer. I live my life with uncertainty.  I have learned to accept all of the above. But what I wasn't ready to accept was the loss of my privacy.

I have always been a private person when it came to my health. Shortly after I was diagnosed, I informed my family, circle of friends and coworkers. I received an email, not long after sharing our news, from an old coworker-someone I had not spoken to in years. As much as I appreciated her kind words, I was upset because I knew the news must have spread through my small local professional community. That one situation was quickly rectified; I made it clear to this person that I did not want my news to go any further.  But realization set in; if she found out, my news was spreading from other sources too. Over several more weeks, we continued to hear from distant friends and acquaintances about my cancer diagnosis.  A friend requested permission to share my blog on Facebook.  I didn't really know how to feel. I understood that my friends needed to seek comfort from their friends and family, and share my story. I appreciated the well wishes from everyone, regardless of how they found out.  But was I ready to share my cancer diagnosis with the world?

As I continued to mourn the loss of my privacy, I came across a discussion thread about a woman whose sister-in-law decided to share her cancer news, while the woman was away, with their common commuters.  The woman returned to a train full of strangers asking how she was.  Another person wrote about a coworker who was absent; the rumour of cancer and dying spread through the staff room.  When the man returned, he was angry to hear his coworkers whispering behind his back despite recovering fully from an early stage cancer.  After reading so many more stories, I decided to write about "cancer etiquette".  This is from my perspective, from a cancer patient to anyone else touched by cancer. These are the lessons I learned from personal experience and/or reading and hearing about others:

1. Everyone is different when it comes to sharing cancer news. Some are very open.  Some only share with a few.  For those diagnosed with cancer, if you want your news kept secret, be sure friends and family know your preferences right away. For others, if someone shares a sensitive diagnosis, it's best to ask their permission and respect their decision about sharing the news.

2. If you are sharing news, share in the best interest of the person with cancer  (eg. someone who can help you or them, someone who could benefit like other cancer patients, etc). Do not share for the sake of gossip.  Make sure who you share with does not negatively impact this person (eg. professionally, socially, etc). 

3. Sometimes, I just want to be "normal". For every person who finds out (who I may encounter), I lose another opportunity to be a normal person. Not all of my colleagues or acquaintances need to know. 

4. I get tired of hearing "How are you?" (in that serious tone) especially if I just saw you, spoke to you or texted you yesterday.  If I look and sound happy and healthy, don't ask how I am. Don't pry for details. I will let you know if there is bad news. Hopefully, I don't have any more bad news to share.

5. Reach out to a friend with cancer only when you are ready.  Of course, we would eventually want to see or talk to you but only if we don't end up having to comfort you. 

6. If you heard about the cancer news from someone other than the person affected, don't pretend not to know. Be honest. Be brief. It reduces any awkwardness from both sides. 

7. Sometimes we want you to listen. Sometimes we just want to forget.  Unfortunately, it's not always easy to tell the difference. Do your best.

8. Cancer treatment has changed over the years. People expect to see a bald, frail person. New targeted drugs, like Iressa and even some chemo drugs, do not cause any noticeable changes in appearance.  Don't be surprised if you see a seemingly healthy person in front of you.

9. Never assume that someone with lung cancer is a smoker. 15-20% of lung cancer affects never smokers. More importantly, smoking does not make anyone deserving of cancer. But if you are a smoker, quit now! 

10. Don't see us for our disease. Do not make us ashamed of our disease.  Do not label us by our disease. Do not isolate us. Do not pity us. We are still the same person after cancer.

I did not write this to make anyone feel guilty so please do not feel guilty. I could have handled it better by clearly telling our friends, family and coworkers to limit my news at the start. That was my fault. I appreciate everything that everyone has done for us (thoughts, prayers, gifts, cards, food, kind words, etc) since this journey started... Thank you so much!

But everything happens for a reason. I have accepted the loss of my privacy because I am ready to be a lung cancer advocate and sharing my cancer journey is the first step to raising awareness. So, go ahead, share this blog and my lung cancer story.  But also add: 

• Anyone with lungs can have lung cancer; you don't have to be a smoker. 

• Lung cancer kills more people each year than breast, colon and prostate cancer combined, yet lung cancer research receives the least amount of funding. 

May we all become more aware of how cancer impacts those affected. May we do what we can to make a better life for everyone around us. Don't take life for granted. Cherish time with those you love because life is indeed short. 

Update July 2014:
Here is a great article on how to avoid saying the wrong things to anyone undergoing a traumatic event or illness. 

http://www.latimes.com/opinion/op-ed/la-oe-0407-silk-ring-theory-20130407-story.html