11

Surviving the "after"

In July, Newsweek magazine published an article on the impact that cancer has on intimacy. It was an insightful commentary on the struggles faced by people whose cancer treatments have left them with marked physical changes, such as the loss of a breast because of breast cancer, or the inability to have an erection because of testicular cancer. And while living to tell the tale is, of course, what anyone diagnosed with this unforgiving disease hopes for, it’s hard to bask in the glow of survival when your sexual identity is in pieces and your intimate relationships are on the brink of collapse.

But it’s not just those whose cancer journey can be traced by physical scars who struggle. People whose treatments have left their bodies intact also grapple with redefining their sexuality, an internal struggle made that much more difficult for others to identify and understand simply because of the absence of tangible clues of illness.

“But you don’t look sick” is one of the most common things said to people living with Chronic Myelogenous Leukemia, a rare blood cancer, and perhaps the most annoying – take a moment to read through the posts on our Facebook page, if you don’t believe me. This comment usually comes from a good place, and yes, we are so, so grateful to have treatments that keep us alive and looking “well.” At the same time, it can lead to feelings of isolation and depression when your outside doesn’t match your inside.

And if your healthcare team is telling you that things are good and you are in the clear, families and loved ones move on – crisis averted – eager for things to get back to normal. After all, if you look well and the doctor says you are well, then it must be so. The thing is, the patient often lags behind, dealing with medication side effects like fatigue and nausea and trying to juggle a mixed bag of conflicting emotions like relief that the treatment is working, feeling grateful to be alive but fearing an uncertain future, and grief over the loss of their “old” life. Because let’s be clear, no matter what the prognosis, a cancer diagnosis changes everything.

It’s not hard to understand then, when the bedrooms of cancer survivors are not the steamy, passionate love nests of the past. Or is it? Not when you are the one trying to keep it together, for sure. But to the person on the outside, it can be very hard to understand why someone who, on paper, has every reason to be on top of the world, is now, as one spouse put it during one of our CML meetings, “an uninspired, non-passionate, boring person in bed.”

It could possibly be one of the biggest, most devastating oversights (besides a misdiagnosis) that can happen in the treatment of people who have had cancer, or are living with it – a lack of psychosocial support aimed at helping to rebuild and reinvent post-cancer lives.

Doctors are really good at having the scientific conversation, talking medication and side effects, explaining x-rays and procedures and comparing outcomes. But ask about depression, anxiety and grief relating to your cancer, and many don’t have the time, or the words to respond in ways that soothe the internal turmoil. Ask about sex drive (if you dare), and well, conversation often becomes limp.

Sure, not all the fault lies with healthcare teams. Talking about sex and intimacy is difficult at the best of times. When your only goal is staying alive, sex drops down the list of priority topics when you see your oncologist. And, when things settle, and you sit across from your doctor hearing about how awesome your numbers/scans/bloods look, erections, vaginal dryness, and loss of libido just don’t seem to fit into the conversation. But they should, especially in these follow-up appointments, when the this-journey-is-about-done-and-it’s-time-to-get-back-to-your-life conversation happens. After all, this is the person who has seen you through from the devastation of diagnosis to a conclusion that you can live with. Surely they have some insights on how you can get your mojo back, and enjoy this gift of life you have been given.

Or at least put you in touch with someone who can.

When I was diagnosed with CML, my oncologist delivered the news in the calm, direct way that only a true expert can. He told me about the disease, the treatment, and what I could expect in terms of side effects. The one thing he didn’t tell me was that, despite an amazing prognosis, living with cancer would change my life forever, in ways that I had not even thought of.

“A heads-up would have been nice,” says a friend who has just finished the last series of radiation treatments for a second go-round with colon cancer. She was well-versed in the seriousness of her cancer and the worst-case scenario, but no one ever talked about the mental, emotional and sexual impact. The reverberations of which will be felt for years to come.

So I have an idea. How about widening the diagnosis/treatment/prognosis conversation to include the other side effects of having cancer – anxiety, depression, fear, loss of libido. Let’s give people with cancer a “heads-up” about how much their life is about to change and then get them the tools to cope and overcome by hooking them up with solid psychosocial support.

The Newsweek story says that, “at least 60 per cent of cancer survivors experience long-term sexual problems, with less than 20 per cent getting the help they need.” Those are pretty crazy numbers. Substitute sexual problems with emotional issues, and I bet that 60 hits the high nineties.

It’s time to honour the science and research that is helping more and more people survive cancer by recognizing that for many, the journey does not end with remission, or a clear scan. In fact, it’s the what-comes-after that often can be the most life-affecting part of having cancer. So let’s start talking about it.

Don’t we all deserve that?

 

Lisa Machado is a former financial journalist who, after being diagnosed with a rare leukemia in 2008, now writes about the patient experience, and the challenges of living with a serious illness. She is the founder of the Canadian CML Network, and the author of the award-winning “Living Well with CML: What you need to know to live your best life with Chronic Myelogenous Leukemia.” She can be reached at lisa@cmlnetwork.ca

 

 

 

 

 

Please share:
Email this to someoneShare on FacebookShare on LinkedInShare on Google+Tweet about this on TwitterPin on PinterestShare on StumbleUponShare on TumblrShare on RedditPrint this page

Comments 11

  1. Thank you!
    I have been struggling with this problem and I can’t talk about it because apparently I’m fine and people thinks I’m just making a big deal of LMC

    1. Post
      Author

      Hi there …
      Yes, it can be very frustrating when nobody “gets” it. A great way of being heard and understood is to find a community of people who share your experiences. Talking to people who know what it is like can be very helpful and freeing … we have an awesome community here in Canada. Check out our Facebook page – we are also working on a private chat forum where people with CML and their families and friends can share their thoughts and experiences in a safe environment. I will let you know when it is ready. Perhaps you can join!!
      Take care of yourself… and get in touch anytime. xxo

  2. This is a brilliant article explaining what so many of us go through. Thank you for bringing it to the open with wit, humour and candour too. Dealing with loss of libido (your own or your partner’s) is a difficult process, it would be wonderful to have a safe non-judgemental place to discuss this and get advice. Thank you for starting the process.

    1. Post
      Author

      Thanks for sharing your thoughts, and your kind words. The response to this story has been overwhelming, which just goes to show that there is a need for people with cancer to be supported in new ways. Thanks for taking the time to write.

  3. I am a 38 year old breast cancer survivor, one year out of treatment. Chemo out my body into early menopause, and the physical side effects on my sex life have been devastating. My oncologist is a wonderful doctor who has done her best to help me deal with the physical aspects, but I still strughle, particularly from a lack of sex drive. Losing that part of our relationship has definitely been a strain. I am fortunate to have an amazing, patient fiance who tries to understand what I am going thru. But too many women are not informed of these side effects and the impact they have!

  4. Post
    Author

    Ellen, thank you for writing and sharing a bit about your story. You are so right when you say that we aren’t old about potential side effects and the potential impact. I know that some healthcare professionals try not to overwhelm patients with the possibilities (think of those drug commercials that spend what feels like forever listing the potential terrible things that could happen). That said, it does put the patient in more of a position of power when they know of what “could” be. And if you aren’t going to tell the whole story, then let’s make sure that the right safety nets are in place for when something does happen. I am very passionate about psycho-social support. While I know it isn’t for everyone, I think that it would be so incredibly helpful if as part of your cancer appt, you were given the opportunity to sit with a therapist who was knowledgeable in your disease, or even another patient, who could have these conversations in a way that made you feel that you had not lost all control. And also have the conversation before your life is falling apart. I wish you all the best. And keep talking about it!!!!

  5. Thanks for this article, it really hit home. I had vulva cancer and not only do i have all the after affects of medications,surgeries and treatments to lower my sex drive, I am also trying to deal with part of my vaginal area being gone (vulvectomy). I feel mutilated and less of a woman. I don’t feel that the oncologists talked enough about how this would effect me, don’t get me wrong I have a wonderful oncologists, I just feel I didn’t get enough information on how I would feel after all was over and done. I have a wonderful husband who has been so patient and understanding, thank God.

  6. Post
    Author

    Rebecca! These stories that I am hearing since posting this story are so heartbreaking. I agree. There are wonderful cancer doctors out there, but their job and primary focus is to save your life. When that is accomplished, I think that the ‘win’ is so great (and it really is!!), that little thought is given to the “after.” Even for patients, myself included, the relief and happiness that comes from being ‘ok’ is so overwhelming and delicious that you figure that if you can survive cancer, you can do anything. Until a few days, weeks, years after, and you realize that you can’t. The ‘after’ needs to be a conversation that happens before, during, and after, for as long as we need it. We deserve to be given the opportunity to manage expectations, not only our own, but also those of our loved ones. Thanks so much for sharing … and yay to your husband who has stayed supportive during what I am sure has been an incredibly difficult time. You reminded me of comment that another woman made about how she resents that she feels like she is always apologizing to her partner – saying sorry for being tired, sorry for being emotional, sorry for being scared, sorry for worrying, sorry for being angry, sorry for feeling unattractive, and it goes on. That’s not a great feeling. We have faced cancer and gotten through to the other side. The time for living is now, for us and for our loved ones. How do we get there? Now that’s a whole other thing, isn’t it?

  7. Beautiful piece. I worked for eighteen years as a GPO at the H Bliss Murphy Cancer Centre here in St. John’s Newfoundland. I started seeing patients discharged earlier and earlier in their aftercare course and saw the deer-in-the-headlights look on their faces when we were saying good-bye to them. That’s why, four years ago, I left the HBMCC and opened up an aftercare clinic in the academic family medicine unit at Memorial University. The emotions you expressed are the ones I am trying to provide some help with. Your piece really resonated with me. I hope more people hear it and take it to heart.

  8. This is so timely for me, I was just lying here very early this morning thinking about how we hardly even touch each other now.
    I had breast cancer 3 years ago that has left me with minimal external scaring or disfigurement. However my libido was really low and sex felt like an effort. Then just 1 year post treatment our 15yo son was diagnosed with an osteosarcoma . This is. Fear I have never felt before, one that I just can’t move past. When my husband & I tried to be intimate I would just sob and sob. He is NED now for the past 2 years thankfully. But we still don’t have sex, I feel we have both given up now, it’s just too sad. I could live without sex but not even touching or hugging is tough.
    I’ll show this post to my husband, hopefully it will at least start the conversation.

    1. Post
      Author

      Oh Lee. You sound so sad. First, let me say a very LOUD YAY for your son!!! I can only imagine the pain that that diagnosis must have brought you and your husband. No evidence of disease is the best news!! At the same time, you have had a ton on your plate – it makes perfect sense that sex falls by the wayside. It is such an emotional act – and when you are at capacity in terms of how much you can emotionally handle, which you most certainly sound like you are, it is virtually impossible to pull it together in bed. In fact, I would even go so far as it is impossible to even fake it.
      A therapist once told me that if you don’t use it, you will lose it. I sort of snickered at that one, but years later, I totally understand what she meant. You just stop trying. And when you stop trying, it becomes too much effort to start again (and how do you even do that anyway?), or it just becomes weird. And then it is just gone. As I mentioned earlier, the response to this story has been overwhelming. You are not alone in this. I am working on an idea that will see us all be able to talk about this openly and safely. Hang in there. And please get in touch whenever you want. lisa@cmlnetwork.ca

Leave a Reply

Your email address will not be published. Required fields are marked *