Sex, Relationships & Lung Cancer

I blush just writing the title to this article. Here we are, well into the 21st century, and many, if not most, of us, still find sex and intimacy a topic that isn't easily discussed. Intimacy problems abound, even among those without cancer, but cancer certainly adds a new dimension to it all. We patients are tired, sick, and terrified. Caregivers are frequently tired and terrified, too. Perhaps when we need the comfort that intimacy brings the most, it is the farthest thing from us. Patients and doctors shy away from the conversation I recently listened to a Webinar that you might also like to hear. It was called "Let's Talk about IT: Intimacy after Cancer" and featured a dynamic speaker, Tamika Felder, who was diagnosed with gynecological cancer in 2001. One of Tamika's favorite quotes is, "I survived cancer. I deserve at least a good orgasm."1 Obviously, Tamika doesn't shrink away from talking about sex and intimacy like many of us do. However, the fact is that, based on the research of Jennifer Barsky Reese, Ph.D., the vast majority of both patients and doctors do shy away from discussing this very important topic.2 In her studies, Dr. Reese has found that the overwhelming majority of doctors say that they are not comfortable discussing sexual concerns with patients and if their patients want to have the discussion, they will bring it up. However, despite the fact that 66% of patients interviewed said that it was important that sexual concerns be discussed, the vast majority feel just as uncomfortable as their doctors in broaching the subject. So, it just doesn't get brought up.1,2 Not having those conversations can be detrimental Sadly, though, not addressing it can be very detrimental. Erin Sullivan Wagner, an anal cancer survivor and founder of AfterCancer.co, bravely discussed a myriad of problems she and her husband faced when attempting to resume intimacy after her cancer treatments. On a Will2Love.com Webinar called "Bring It Up! Talking about Sexuality in Cancer Care," Erin told how intimacy problems after cancer eventually led to the demise of her marriage. I found it a little interesting and somewhat disconcerting that, based on research by Dr. Reese, only 21% of lung cancer patients said that they had received information from their oncology nurse or doctor about how their cancer and/or cancer treatments might affect their sex lives. By contrast, 33% of breast cancer, 41% of colorectal, and 80% of prostate cancer patients said the topic was discussed.2 How to start a discussion with your doctor If this is an area in your life that is causing concern, please don't just ignore it. If you are not comfortable bringing the subject up with your doctor face-to-face, consider sending them an email asking for help. You may want to know about medications that can help or request a referral to a specialist. The Will2Love webinar gave three steps to follow if you want to discuss sex and intimacy problems with your doctor: Request the time to tackle the problem in advance. Go into the appointment prepared. Know what questions you want or need to be answered; help your physician help you. Think about where you are in your cancer journey and exactly what problems you have been experiencing or worry you will experience. Be prepared to discuss what you've already tried that didn't work. Don't leave without a plan. If your oncologist or nurse wasn't able to answer your questions satisfactorily, ask for a referral. Or, maybe the doctor can recommend books or Websites that might be helpful. Just don't leave frustrated that your questions were not answered. Helpful resources for support In the meantime, here are some websites that you might find helpful in addressing sexual or intimacy concerns: Bring It Up! Talk about Cancer, Sex, and Fertility Will2Love Webinars Aftercancer.co Cervivor.com is Tamika Felder's Web site. She said they discuss sexual and intimacy issues frequently. AllofMeIowa.org CancerCare.org [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] A few months back, I wrote an article about how hard it was to meet someone who will accept you as a cancer patient, with no cure in sight. It's extremely hard, especially living in a resort community where the majority of people you meet are passing through for various reasons. The community I live in is also a major golfing community. So, we have plenty of hospitality workers on this island. In fact, you can basically narrow down the main occupations of this area. They consist of hospitality employees, construction workers, and real estate agents. Dating discouragement My article a few months ago was discouraging, to say the least. As a single mom, with stage 4 lung cancer, it is so hard to do things on your own. I was an independent woman before this happened and didn't need a man, or anyone for that matter. Only my daughter was my priority. But meeting someone post diagnosis proved harder than I could have ever imagined. Although I felt lost, scared, and alone, I quit trying. But what if something happened? I had no family here and was simply staying so my daughter could continue to build and sustain a solid relationship with her father. Let's face it, no one knows when the other shoe will drop. A serendipitous, chance meeting After writing that article, I went to court to complete my bankruptcy filing. After my successful day in court, I decided to treat myself. Albeit, I was alone, this is a small town where you can walk into any bar and practically know everyone. I went to a local karaoke bar. I've done this before and seriously sing like a dying cat. Definitely not my forte. Upon arrival, I sat next to a couple I knew from visiting the establishment a time or two. We were having a great time when the lady sitting next to me pointed out a man at the end of the bar, by himself. He kept staring in our direction. She "dared" me to tell him to buy me a drink. So, I did. Approaching him I said, "Since you keep staring, buy me a drink". And, he did, so we began talking and I found out he was supposed to be meeting a girl that night. It was the second time he would be seeing her, but she didn't show up. We spent the night talking and when the bar closed, we came back to my house to hang out longer. Finding my rock No, I did not sleep with him. When meeting guys, I don't do one night stands, thus I did not sleep with him. I found myself incredibly intrigued by him. I'm sure he probably thought he was in for a good time that night, but I wanted company, not sex. So, he obliged and stayed up with me most of the night talking. I revealed my diagnosis to him, as well as the worst stats I could think of. If he was going to run, I wanted it to be then. Surprisingly, he didn't run. In fact, he asked me out to dinner. A few nights later we were eating a fabulous meal overlooking the marina. We've been inseparable ever since. This man came into my life just as I was losing hope. He makes me laugh so much that I forget about cancer when I'm with him unless I'm having a bad day. You have to keep living Someone commented on my first dating post, something to the effect of, "This is a joke, if they had stage 3 or 4 cancer, the last thing they would care about was dating". Well, that is true in the beginning, when your world is turned upside down. But, after living so long with it, I needed the companionship and help. And I'm so grateful for this man I randomly met. You have to keep living. Worrying will do nothing for you. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] My cancer journey began in 2002... that is 16 years ago and 5 cancers later. I've given up on finding someone who will stay with me through the long haul. Instead, I have found "friends" who will share emails and coffee dates but nothing serious. I do dream of the white knight coming to rescue me, hold me, and share the joys of life. But the reality is that isn't going to happen so I have learned to settle for what they can give. And yet, although I realize the odds are against me, I cannot help but secretly hold out hope that there really is someone out there crazy enough to want to be with me through the long haul. More than sharing the cancer journey, I dream of someone who can live with the focus on the great joys that are in my life instead of the cancer. I am not being unrealistic; although cancer is part of my life, I am not the cancer, I am a real human being who has the same needs to connect with another human on a higher level. They just need to be crazy enough to accept my limitations and fight with me!,By now, all my family and friends know about my lung cancer diagnosis. Even acquaintances are aware since I frequently post on social media about my journey and advocacy work. Every now and then I am in a situation with people who have no idea about my diagnosis, however. While I don’t just start talking about lung cancer to everyone I chat within a grocery store checkout line, I do consider it part of my identity and I often wish to share my diagnosis and involvement in advocacy work. Our recent trip to a small town B&B Recently, my husband and I went away to a small town B&B in Wisconsin overnight. I love staying in B&Bs; although my husband doesn’t like them as much as I do, he humored me this time since it was Valentine’s Day! As anyone who has stayed in a B&B before knows, there’s often a “group” breakfast in the morning with all the overnight guests sharing the same table. I love talking to people and have always found this a fun part of the experience, but it’s one of the reasons why my husband doesn’t particularly enjoy B&B stays. Chatting over breakfast At this B&B, we woke up early for breakfast and there was only one other couple eating at the same time as us at the central table. After a little bit of small talk, the woman in the other couple asked what kind of work my husband and I both did. While I was gulping down my much-needed first cup of coffee of the day, my husband quickly jumped in and said he works as a statistician for a logistics company and I am a stay-at-home mom. I was kind of taken aback by the way he described me and not especially pleased. I felt that he ignored a huge part of my identity by his comment and I wasn’t sure why he felt it necessary to speak for me. I spent the rest of the breakfast stewing over this and not saying much. Those of you who know me personally understand how much I like to chat, so that really tells a lot about how I felt. To make matters worse, the other woman, who was very sweet and almost young enough to be my daughter, kept going on and on about how wonderful it was that I was a stay-at-home mom and how her mother did the same while she was growing up. Now, of course, there’s nothing wrong with being a stay-at-home mom. I left the workforce when my older son was born and I was a stay-at-home mom for years while my boys were young. However, since my diagnosis and involvement in lung cancer advocacy, I usually answer any questions about what work I do by relaying that I was diagnosed with lung cancer over 5 years ago and I now advocate for lung cancer awareness and research. I feel that this is a pretty simple and straightforward answer and leaves others free to ask more questions or not, however they please. Acknowledge my diagnosis and advocacy As soon as breakfast was over, I confronted my husband (with somewhat of an annoyed tone) and asked him why he said what he did. He was actually surprised that I was upset and told me that he thought I wouldn’t want to get into my whole story with strangers at a B&B breakfast. I realized that he meant well and was actually trying to protect me in his role of caregiver! We had never discussed before how I would want to answer in such a situation, so he just said what he thought would be best. This incident led to an open discussion between us about how important it is for me to acknowledge my diagnosis and my advocacy work if directly asked in order to avoid feeling as if I am hiding a major portion of my identity. An open conversation about sharing my diagnosis For any of you who might be feeling sorry for my husband and think I am “throwing him under the bus” with this article, please know that I DID ask him if it was ok for me to write this story. He agreed with me that sharing our experience might lead to better conversations between patients and their caregivers about how much to share when meeting new people. Since my husband and I had never really talked about this in over 5 years, maybe our misunderstanding about what to say might help others discuss this issue and figure out a way to be on the same page. My husband promises that he will no longer try to protect me by answering for me in the future! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] In cancer terminology, there is a lot of very loaded language. Terms like "survivor" have become so ingrained that patients even worry about when it is okay to use the term for themselves -- and some of us debate whether it is even a term that should be used at all. The power of words Words define our experiences in many ways, shaping how we express our condition, defining how we are understood by others. Words impact our treatments, our options, the very nature of our existence. And they can have a profound effect on those close to us, language subtly shifting the dynamics in a relationship. This is why, in our household, we use neither the term "survivor" nor the term "caregiver." I even avoid referring to myself as a patient unless I am directly addressing my relationship with my doctor. Instead, we speak of ourselves as "partners" in this ordeal of cancer treatment. Not relating to cancer labels To both of us, the term "caregiver" always conjured images of a bedside nurse tending to an invalid. Or it makes us feel chained together, perhaps out of societal duty, in a way that makes one feel in servitude to the other. I realize that for many people, being a caregiver may mean something else entirely; it may even feel like a term of endearment, I imagine, or it may be worn as a proud badge. But my point is that these labels do not universally fit, and using them as though they did is potentially hurtful. If we defined ourselves as Survivor and Caregiver, there is an immediate dynamic set up that raises the status of one while potentially diminishing the status of the other. There is an ingrained stigma that evolves, as well; caregivers, in general, have very difficult jobs that frequently lack the support offered to survivors. They are not offered the Purple Hearts that Survivors metaphorically brandish, though their emotional endurance may be forced to exceed that of their more physically suffering counterparts. And they are expected to remain steadfast throughout, frowned upon if they complain or wish for a life like the one they had before the cancer. When a Caregiver wants to get away from the Survivor, it is selfish. Society does not like a person who turns away from the brave and noble Survivor, never mind that the Caregiver has likely been hammered into the ground by the heavy blows of constant stress, sleep deprivation, dramatically increased workload and household responsibilities, and quite probably having to deal with the erratic mood swings of the Survivor throughout changing treatment protocols. And then there is the Caregiver overcome with sadness, unable to handle the burden of watching a loved-one struggle. Our always shifting roles This is not to diminish the situations that we sometimes find ourselves in through the machinations of fate. Sudden shifts occur in all our lives that reframe how we exist, forcing roles upon us that perhaps we never envisioned possible. Sometimes we rise to new heights, sometimes we feel trapped. While some couples may settle comfortably into the roles of caregiver and patient, it is not a dynamic suited for every relationship. I would have no trouble being the caregiver to my child, for instance, because it is a natural progression of our existing relationship. And I would have no problem hiring a caregiver for myself if the need arose and I had the financial ability to do so. But in my personal relationship, I have always felt that we functioned best as partners. Certainly, we cannot always be on equal footing, but we recognize that it is a shifting paradigm, one in which we must try to care for each other, regardless. Support from my partner I may be a patient, but being a patient does not define me in terms of my relationship. And there may be times when I require care, where I cannot make my own meals or tend to any household duties or even get out of the bed -- but until I am calling in hospice and preparing for my final days, I want someone who is focused on propping me up the same way that I will focus on propping up my partner. This is all about teamwork, and for us, this kind of team works best with equal footing. Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

Sex, Relationships & Lung Cancer

S-E-X and Cancer

Relationships, Dating, and Stage 4 Lung Cancer 2.0

Anyone Who Wants to Date Me Must Be Crazy

Do You Tell Everyone You Have Lung Cancer?

Dating with the Big C

The Burden

My Partner Is Not My Caregiver

Building a Network as a Single Person

Cancer's Effect on Relationships

Celebrating the Gift of Life with Lung Cancer

Lessons from Love and Loss