People say that cancer changes everything. But the biggest surprise to me was how little it changed things with my husband. There is a period of crisis, of course, when you’re clutching each other’s hands and can’t bear to think of the “'til death do us part” vow actually coming true. It seems almost unspeakable. But then, possibly out of necessity, you just keep on with the familiar: Tuesdays are garbage night, a leaky faucet needs fixing, eye exams and dental appointments need to be made. My husband and I squeezed out a few date nights to the movies or to dinner, which helped us pretend for a little while that nothing was changing. The marriage marches on, from the mundane to the magical and back again.
Hopefully your partner will be there to hold your hand during appointments, or make you laugh when the time is right, or sit quietly when you just want someone to sit with. But they might not, and that’s normal. They might want to take a walk or a bike ride or just drive around and have some time to themselves. What few people talk about is this: Even with cancer, you will still nag your spouse about taking out the garbage. There will still be moments — weeks, months even — of an ordinary marriage. Cancer doesn’t mean a rosy glow on everything, sweet smiles at every turn. A cancer diagnosis merely adds another element to the otherwise complicated act of marriage.
Making sure your partner or spouse gets time off is important. Their life has been turned upside down, as well. And they might be the one with the health insurance, so they simply must go to work every day to keep the insurance and the income. If you, the patient, are the breadwinner, that pressure will undoubtedly be even worse. (And that might require a financial-planning meeting.) I can say from the other side that it’s best to get your feelings out; this isn’t the time to let resentment build. Talking to a therapist or marriage councillor, even if it’s once or twice, can be a lifesaver. If your spouse or partner’s family is able to visit, that can provide some relief and comfort for them. Your partner’s in Cancerland, too, albeit on a different level; they need someone to turn to as well. Allowing them to lose it and cry — in front of you, or alone, or with whomever they trust — is so important. They need that space, particularly if you’re facing a prolonged treatment. (One caveat here: If your in-laws create more stress for you, the patient, plan accordingly so your partner can have time alone with their family.)
What I felt most those first three months of my cancer road trip was anger. This was totally unexpected. It stemmed from so many places: anger that there might be a life without me being present, anger that my husband didn’t understand my emotions and exactly what I was going through, anger at this life interruption that might possibly be longer than a pause. Knowing ahead of time that there might be a level of anger would have helped me. Being able to tell your partner that it’s cancer you’re angry with, rather than them or the over-scrambled eggs they made you, is imperative.
Your partner or spouse also might not want to talk about your diagnosis and everything that goes along with it. There might be more silence than you would like. Not everyone is ready to talk about the same things right at the same moment. It was too hard for me in the beginning to talk to my husband about my concerns, so I wrote him a letter instead. Do whatever feels right for you, but get the words out. To me, it was important to get the words down, and even if we didn’t have to face the unspoken right then, I knew at least I had said what I wanted to say. Ignoring the obvious and not addressing certain realities only adds to the frustration, disappointment, and anger over your illness.
There might be more silence than you would like.
Once I had finished the worst of the treatment, my husband and I went away for one night to a hotel 10 minutes from our house — we were literally away for 25 hours. It was hard for me, emotionally, to leave the kids, but we needed the time to reconnect. The reality is that your partnership gets put on the back burner when you’re in the thick of treatment, with or without kids. From the outside, we looked like a regular couple, but I was different: breast expanders, no nipples, no ovaries, in menopause, exhausted — you are not the same, surgery or not, and it’s important to discuss that. Added to that, I had no sex drive, so talking about anything related to sex was very uncomfortable and felt awkward, even with my husband. The time together turned out to be a wonderful escape, but it took effort and big emotional leaps I never would have anticipated.
Reduced or a complete lack of sexual intercourse is also a reality of cancer. It might last weeks, months, or even years, and it can greatly affect couples. Physical and emotional changes make sex a low priority, or impossible for some patients. If intercourse isn’t possible, try snuggling or just hugging. Try to keep some form of intimacy going, even if it’s just holding hands. I felt like less of a woman without my breasts, and I also felt a certain amount of shame in front of my husband; he had seen me in some unimaginable moments. How could he look at me in an intimate way after seeing me bloated, vomiting, and with drains sticking out of my chest? I could barely look in the mirror after my double mastectomy, much less imagine baring all in the bedroom. Male cancer patients may feel uncomfortable with missing parts or lack of sexual desire or the physical inability to have sex due to treatment. If you’re diagnosed with tongue cancer, your salivary glands and your tongue itself may be affected, which makes kissing difficult. It might help to view these as setbacks, not roadblocks. The scars and feelings that left me shaking and vulnerable are now distant memories; a lot of talking and a lot of self-acceptance (and a few cute nightgowns) helped me see myself as a woman again.
And remember, your partner may feel just as nervous with you. They might not know what feels good to you, or they might be afraid to hurt you; this isn’t a one-way street — it’s a two-lane road, and you both have to start talking. If you can’t bear to bring it up, consider talking to a sex therapist or councillor or attending a sexual health program at a hospital or medical centre; having a third party might make the topic easier to discuss and address.
Excerpted from This is Cancer: Everything You Need to Know, from the Waiting Room to the Bedroom by Laura Holmes Haddad, published by Seal Press, an Imprint of Perseus Books, a Division of Hachette Book Group.