Stories That Inspire: Caregiving as a Prostate Cancer Spouse

By: Janessa K., Washington

In 2014, Janessa went with her husband, Will, to the doctor to receive his prostate cancer diagnosis. He was diagnosed with stage 4A prostate cancer, with a Gleason score of 7/8. They have two children together. She shares their story and how finding support as a caregiver helped to keep her, and her family, together in all of the chaos.

“Caregiving is tough. There really is no easy way to manage, other than to simply do your best and work through it as it comes. It is scary and difficult, but remembering to give each other space, along with lots of love, understanding, and support- and you will both make it through to the flip side.”

Janessa K.

How did you first take the news?

Janessa: I didn’t take it well. I had never really dealt with a close-to-home cancer diagnosis, and I didn’t know where to go, or which way to turn. My mind immediately went to what our family stood to lose if Will didn’t make it- and I couldn’t take those thoughts. We still had kids to raise and a life to live. He was given two to three years to live, which made things feel like there was an expiration date. None of us really liked that. Will took the news very hard but vowed to keep a positive mindset for his family.

What were some of the first steps you took as the caregiving spouse?

Janessa: After the initial week of panic and terror, I tried hard to fall back in to my “normal” routines with the kids, and work. The first step I took as a caregiver was to research every possible opportunity to get us both help and support. I first found a local prostate support group for Will to attend in hopes he would meet other men going through similar situations. I then found a yoga group for myself that supported spousal caregivers and their families through their cancer journey.

I really enjoyed the caretaker yoga class and group. There were so many other caretakers in the group whose partner was close to their end, or in various stages of cancer- yet their hope was immense and palpable. This helped to give me the honest perspective I was seeking and the knowledge and empowerment to know what was to come. They gave me tips and tricks to maintain our family unit, myself, and to help my husband through this battle.

Did the support group help to sway the way you and your husband handled treatment plans?

Janessa: Yes. We were able to hear so many different stories, methods of treatment (both Western and holistic) and we met so many people that had “connections” we could check in with. This ultimately helped us to determine which treatment would be best for Will, and our family. We were lucky in that one of the group attendees was a holistic doctor there to support their partner, which gave us a look into all aspects of types of treatment.

What were the worst and best parts of going through Will’s treatment?

Janessa: The waiting rooms and being in the hospital while his surgery was taking place was the worst. It was heavy and filled with anxiety. I had Will’s family and my own sister stay at the hospital with me while the surgery was happening, and thankfully, my sister is a clown- and brought clown noses to lighten the mood for the family, and others in the waiting room. It worked wonders, and even drew up some laughter.

I found that moving around a lot was helpful during the times of waiting, especially when he was back in surgery. We did a lot of laps in those hospital halls and I was grateful to be able to do so. Looking back, those walks through the hallways were just the start of my “perpetual forward momentum” through this entire ordeal. His news after surgery was not great, in that many lymph nodes were also affected and needed to be removed.

The worst parts of his whole ordeal were the treatment side effects themselves. The sickness from the chemo, the body pain from the radiation, and host of side effects from all of the support meds he needed to take. We could never tell from one day to another how these side effects would hinder his days, making every day a surprise. At first this was hard to deal with, as I am a planner- but after a few months we both fell into the new routine of never knowing which way was up.

The worst part for our relationship was the sexual dysfunction, which happened on both of our parts. His due to loss of function from the cancer, surgery, and treatment, and my own from being so exhausted from running our lives that there was just nothing left for intimacy.

The best parts of the treatment happened with each milestone- whether good or bad- and seeing the light in Will’s eyes. We decided soon after his surgery, that each and every moment would be met with positivity. That wasn’t always easy to achieve, but we got better at it, and communicating as time went on. And of course, years later hearing that he was cancer free- I’ve never smiled so much in my life.

How did you both work through the changes- mental, emotional, and physical- before, during and after treatment?

Janessa: The first thing I did was to give him space. Space to accept the situation, accept the cancer, accept the body changes, and accept that I was not going anywhere in this journey. That I would be there when he needed me, and maybe even when he didn’t. I wanted to make sure I was there for him through the good, bad, and the real ugly.

Mentally he worked hard to keep his spirits up with support groups, time with friends, family time, and meeting with his own therapist. By working to keep his mental spirits up, this helped to keep him level emotionally. Other than diagnosis days, or the super hard recovery after surgery days, he was often peppier than I was.

The physical issues and ailments were the hardest for him. Losing part of his testicles along with the sexual dysfunction that began instantly with his treatment were difficult for him, and myself. Thankfully his surgeon was very open about these things, which is not typical in our current medical system. He was told about prostate massage after he was released after surgery, and he began doing this therapy immediately. While there were no instant changes in his loss of ability, it gave him hope to keep moving forward.

When his incontinence started, he sought out help with his pelvic floor (after I had read that this important exercise was not only for women!) that ended up helping him to have better control- which in turn helped him feel more human. In 2019 he ended his chemotherapy and radiation treatments again and was declared cancer free. At this point we reached out to our oncologist for help with his quite severe erectile dysfunction.

He did not want to take more medications or have more surgery immediately, so opted to try penis pump therapy, which uses vacuum pumping systems to help restore function. He was leary, as his ED was severe, but after one year of using various pumps (he had a variety of styles) he can now achieve an erection that is capable of penetration. This has changed his entire outlook on life and helped to strengthen our marriage even more.

This is why I wanted to share our story with Reclaiming Intimacy. Not enough people know about the sexual side effects and dysfunction that is sure to come with any sort of cancer treatment. We learned that many of the men in his support group had no real support in this department, and when we learned of RI in late 2020, it was the first thing he shared with his group. We are grateful to see Reclaiming Intimacy not only cover sexual dysfunction in such a respectable and personal way, but also to help spousal caregivers learn how to stay connected or re-connect when needed.

Where there is a Will, there is always a way!

How did you handle this with your children?

Janessa: They were entering their teenage years when this began and were thankfully old enough to understand the basics. We gave them their space to digest and take it all in as well. We encouraged them to talk, communicate, and ask questions whenever they had them. We did not push for them to help out extra- unless they willingly wanted to.

More often than not, one of them was the first to beat me to whatever their Dad needed when he asked. At times it was very hard for them to see him, and myself struggle, but years later they tell me they are stronger for it. One of them has since faced their own medical crisis and handled it so well- that I can only thank their Dad’s cancer and treatment for showing them how to handle such chaos.

As a caregiver, how did you work to take care of yourself?

Janessa: I’d like to say first that I think I had a pretty great patient. He always listened to his doctors, and thusly me backing up their orders. He kept himself in a positive mindset 90% of the time and continued on with things he loved- even when exhaustion tried to beat him.

I learned early on that taking care of myself was key. Immediately after Will’s surgery, I fell ill with bronchitis. It took me away from caring for him for over a week and I hated it. It is so important to take care of yourself first. Exhausted and burnt-out caregivers do absolutely no good for their person and can in fact make things even worse and more stressful.

I learned that when people asked what I needed, instead of my usual, “oh, I’m fine!” answer- I would be honest and tell them exactly what I needed, or how they could help. It was amazing, because for the most part, they did just what I asked! In the moments when I felt overwhelmed and overworked, I would reach out for “household assistance” and family members and friends would show up for the day to help with anything I needed- laundry, dishes, cleaning, errands, a nap—anything!

When I felt my mental state start to shift or decline, I would immediately reach out to my therapist (every caregiver should have their own, and another they visit with their patient) and set up a few appointments to get me back on track. It was also in these moments that my support group family would step in with extra texts, calls, or bring me my favorite caffeinated beverages.

It took me months to finally be comfortable with asking for help and accepting it, but once I did, it really smoothed some of the last remaining “bumps” we faced on Will’s road to recovery. Now when I hear of friend’s or family becoming sick or being diagnosed with something life-long, I step up and offer help and meals before they have even asked.

I also learned about self-care, and how much I lacked at knowing how to do this being a mom and wife. I never took time for myself- my time was always spent on my kids, husband, work, and family. I had no real balance for myself and that was not pointed out until his diagnosis. Now I take time to hike, be outside as much as possible, and I’ve taken up natural harvesting and learning all I can about natural plants and plant-based living.

What is your best advice for other spousal caregivers?

Janessa: While this road will be tough to travel, don’t give up. You are your partner’s best support system, and vice versa. You are their best advocate. You know them like only they do. The emotional and physical aspects can be very challenging, but with patient and understanding, anything is possible.

I would also suggest immersing yourself in knowledge- about caregiving, about your person’s cancer, about their treatment, and the sexual side effects that will surely arise at some point. Do not fear the dysfunction that is to come but be ready to learn new ways to find and get you and your person’s intimacy needs met. There are SO many options out there!

Learn your methods of self-care and do them. Do them as often as you can. Do NOT tell yourself that you are exempt from needing self-care.

You will be exhausted in ways you did not know possible. Find your support system- your groups, your people, and those you feel comfortable asking for help of. Understand that caregiver burn out is a real, real thing and can wreak havoc in any relationship if left to fester. Taking care of you means that you can be the best caregiver for your person.

Most importantly, do not give up on yourself or your person!

Reclaiming Intimacy would like to thank Janessa for sharing her caregiving story and wish she and Will along with their families the absolute best going forward! Parts of this interview have been edited for story sizing and length only.

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