I don’t believe anyone is prepared for a cancer diagnosis.
About five years ago, I started getting sick far too often for an otherwise healthy 23-year-old. I was coughing and generally feeling uncomfortable to a point where I was reluctant to go about my daily life. I saw doctors about once a month, and every time it was the same thing: “Becca, here is some medication for your pneumonia (bronchitis/asthma/allergies/flu/cold). You need to lose some weight, drink lots of water, and you’ll feel much better.”
So I did; I followed their recommendations and cut soda from my diet completely, drank nothing but water, I was at my lowest adult weight, and yet I still did not feel better.
After checking WebMD, and not seeing a single thing that couldn’t be healed with some antibiotics, I was completely convinced I was imagining things. Unfortunately, it kept getting worse. I could no longer exercise because I would start hacking every time my heart rate and breathing picked up. I could no longer sleep laying down and had to resort to laying on a pile of pillows to keep me sitting up. I was coughing with such intensity that I was vomiting or urinating, even with an empty stomach and bladder. I no longer felt interested in sex, or spending time with my friends.
At the time, my entire life was spent half-hiding the desperate coughing. My husband and partner were both becoming increasingly concerned about my worsening condition. Then after two pneumonia diagnoses in three months, I finally saw a specialist, and finally got a clear diagnosis: Neuroendocrine Carcinoma, a rare slow-growing cancer that doesn’t often present symptoms like other cancers.
The cancer had taken hold in my lower left lung, blocking access to the bottom of the lung, and restricting access to the top. In November 2012, I had my entire left lung removed in one eight hour surgery. If you do not have a weak stomach, and are interested in the photos from during the surgery, click here.
I was lucky through this process that I didn’t need chemotherapy, and my cancer was totally removed in one surgery. I was lucky to have my partners, family, and friends to help me through it. I learned through this journey a few valuable lessons from being the patient that I’d like to pass on to you.
1. Allow your friend to process what they are experiencing however they need to.
For me, it was all about the black humor. Jokes about being “breathless” were (and still are) funny enough to me to leave me rolling on the ground in tears. However for some people the processing can be a bit more serious. If your friend wants to talk about their diagnosis, let them. Tell them that you would love to talk if they want to talk about it, and be up front in asking them how they would like you to handle the conversation. If they want someone to vent to, let them vent; don’t offer advice on you would handle the problem. While you may have some sound experience and good advice, different people in different stages of handling a difficult diagnosis may not process advice as helpful, but rather as critical, demanding, or as additional stress.
2. Instead of offering to help if they need you, offer specific ways in which you would be willing to help.
When someone lets people know that they have cancer everyone says, “Let me know if there’s anything I can do.” I had so many good and caring friends offer me help, but without a specific idea of what they could or wanted to do for me, despite needing help, I didn’t take them up on their offer.
Offer specifics to your friend that fall into a realm of what you can actually do. Can you cook? Great! Offer to cook up some meals and freeze them for your friend so they don’t have to cook. If you have the ability to, offer to drive to doctor's appointments, or drive their partner to work. Offer to help clean their home, walk their dog, or feed the cat. Offer to sit with them after surgery or during chemotherapy. Do not offer to do something you cannot reasonably accomplish with your current state of finances, time or personal commitments elsewhere.
3. Understand that they may not have been able to tell you about their diagnosis themselves.
Immediately after receiving a serious diagnosis, everything can feel a bit surreal. I felt confused, sad and frightened, as well as a litany of other intense emotions. I chose to call and tell my family, my partners, and my very best friends. Everyone else, I told with a Facebook post. Some people got angry with me because I didn’t tell them directly. Communicating with friends who felt hurt because I didn’t give them a phone call or a text while I was still reeling from the diagnosis made it incredibly hard for me to focus my feelings, and cope with the life-changing news.
4. Do not desert your friend.
I particularly want to emphasize this point. Especially if you’re young, or haven’t experienced much loss, it can be easy to allow yourself to fall out of touch with a friend experiencing something you’re unable to handle, to try and lay low until their problem passes. This can be heartbreaking for the person in crisis, as they may feel abandoned, or simply alienated from previously flourishing friendships because of something outside of their control.
If you’re not comfortable talking about, or dealing with something this big, let them know you are still there for them in other ways. Tell your friend, “I really care about you and your health but I’m not sure how to deal with cancer. I’m not sure how to act or behave around you. Is it OK if I just try to keep things light?” Your friend may actually end up needing someone to distract them with normal conversation after all the talk about cancer.
5. Use Kvetching Circles.
While I was recovering from surgery, I came across this post from the blog Adulting, which is such a useful blog if you haven’t heard of it. It’s about Kvetching Circles, an excellent trauma management technique where you draw a circle, and put the name of the person experiencing the trauma in the circle. Around the original circle, draw a bigger circle and put the name(s) of the people closest to that person. Repeat as many times as needed, until you’ve included all the people most important to you, in your closest “circles.”
The person in the center can say anything they want to anyone. They can whine and complain, and cry about how unfair their life is. Everyone else can say those things too, but only to people in larger rings. It is important to remember that the person in the center has a lot of crying rights, because they’re going through something difficult.
6. Be respectful.
Keep in mind that your friend may not want to talk about their experience. Don’t force it. If they’ve told you that they had cancer, or have cancer, show your support. A simple “I’m so sorry about that. Please let me know if you want to talk about it” can be really helpful. Don’t pester them for information about their treatment plan. Don’t tell them what they should’ve done differently, or tell them their doctor was wrong. Their treatment plan is for them and their doctor to decide, not you.
7. Be understanding of physical changes.
Depending on treatments, your friend may not have the same energy that they did prior to their diagnosis. They may need to take breaks on walks, or stop more often for food. They may not be able to stay at parties as long, or drink as much. They may need a little bit more cautious about being around friends who have colds. Try to be accommodating without drawing too much attention to the situation.
For example, if you’re hiking with your friend and they mention they need to take a short break, tell them you were feeling the same way. It can really suck being the buzzkill that needs to stop more often. Ask your friend before you hug them, and allow them to dictate how tight the hug is.
8. Don’t be afraid to share big news.
Despite having cancer, or living with cancer, we are still people who get excited about things. Often it becomes all doom, gloom, and doctors. If you have big news, don’t be afraid to share it! However, also be understanding if the emotional response is different from what you’d expect. Your friend who can no longer have children is still happy that you’re pregnant, they may just need a moment to get over their feelings (especially if they have a new diagnosis).
9. Treat your friend like the same person.
Be mindful of lifestyle changes, but don’t treat your friend any differently as a person. They’re still the same person you care about, they just have cancer. Having cancer can already leave someone needing to readjust how they feel in their own body, and being treated differently because of a diagnosis can be a very alienating feeling. When someone’s own body feels alien, and they feel singled out in their group of friends, the entire process of healing and moving on can be much harder.
**For more information on Carcinoid Cancer, or to donate to the cause, please visit http://www.carcinoid.org/ **