Cancer Caregiver Stories: Lisa Matthews, Prostate Cancer, Spouse
Lisa Matthews suddenly became a caregiver to a cancer patient, her husband, Bruce. He was diagnosed with stage 4A prostate cancer, Gleason score 8/9.
We had an agreement. When we moved six months before and six months after, there was no discussion of divorce or separation because you’re not at your best. The same thing happened with the diagnosis.
It’s just that tough. It’s scary and difficult, and you need to give each other some space, but also give each other that support and love.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Video: Lisa Shares Her Perspective
Dealing with the Diagnosis
How did you process the prostate cancer diagnosis
Not great. I don’t think anybody with that kind of news processes it. You start thinking about what it will mean to lose them.
I had three kids, three teenagers with him, and I didn’t know what it was going to be.
They told us that he had two or three years. We’re far from that now, yay, but it was terrifying and makes me tear up just thinking about it.
»MORE: Processing a cancer diagnosis
What were the next steps for you
I looked for support and looked for help for me and for Bruce. I found Life with Cancer, a great program in Virginia. It provided all kinds of support.
They have yoga for the patient and the caretaker, and I finally got Bruce to take some yoga classes, and they also had support groups.
Support Groups
Describe the cancer support group and the caregiver support group
I was really lucky and felt lucky having the caretaker group. Many caretakers in the group partners were nearing the end of hope and we were still in the beginning of hope.
It gave me a lot of good perspective on where he was and what was going on in our life. The support was the best thing.
In the prostate support groups, oftentimes I was the only woman in the meetings. We moved to another group and they had a few women there.
I was surprised a lot of the wives didn’t go, but after sitting there listening to the men talk about their procedures, they get really technical and it gets really boring. They’re all about the science! Geeks!
How did you get the conversation and support you needed
Reading the information on treatment was so terrifying, so the first thing we did was contact Bruce’s older sister, who is a biologist. We asked her and her husband to please look for procedures and best practices for his type of cancer, look at what’s available.
We asked them to just do it for us, because it was just terrifying for us to look at that. I imagine, as his sister, it was pretty frightening for her, too.
Her advice was in line with what our gut told us. The next thing we did was when we decided on the treatment, I had his sister come out for his surgery.
I didn’t want to be alone and I didn’t want to put that on the kids either. Our middle child wanted to be there. The other two stayed at home. The oldest was able to drive so if they changed their minds, they could come.
Dealing with Treatment
How did you keep your mind occupied during Bruce’s surgery?
Waiting rooms are horrible. Tense. Everyone in them is worried. It isn’t a good atmosphere for someone who is anxious.
So, his sister and I had a playful time during his surgery. We walked around the hospital with clown noses and we had little buttons, flowers, and kept on moving them, where they were, dressing in hats and things.
I needed to pace so we just walked around. We kept on moving things so we would have this little bit of silliness if people saw us once, and the second time they saw us, we looked different. We did a lot of that. We even went to a lounge area that I knew about and had a yoga session.
We didn’t sit still. We just kept on moving and didn’t sit in the waiting room.
Went to the cafe for coffee and chocolate something or other. They assured me that they could get a hold of us when they needed us, and that we could be there within minutes, where we needed to be, so that’s what we did.
We did not sit and stew and worry. Well, we were worried, but we tried to keep our minds occupied. It was a really great way to deal with the stress.
You gave him space after the surgery
We got news after the surgery that wasn’t great. They said he had a lymph node that was compromised and so they took a lot of the lymph nodes.
So right out of surgery we knew he wasn’t okay, yet. It was at his first appointment that he got the news that it was in a lymph node.
We didn’t share that with him. We knew he needed to have a little time to be positive, himself.
One of our children was with us. We all decided it would be detrimental to his recovery from the surgery to take away that hope at the moment.
Mental and Emotional Support for Self & Family
How did you handle talking about the diagnosis treatment with your children
They were 14, 16, and 18 at the time. They weren’t exactly little and they were proactive and very helpful. We talked about diet changes and what dad needed.
They were very good about helping out with everything. We didn’t sugarcoat it because it’s not fair.
They needed to know and we arranged for therapy for them, if they needed to go see somebody. We encouraged them and told them they could go to the teen support groups.
They chose not to do that, but they did have the ability to see people at our HMO to talk it over, or they would just talk to us. We made sure they knew all the avenues were open for them.
»MORE: Parents describe how they handled cancer with their kids
Importance of caregivers taking care of themselves
Get out of the house if you are really tired.
Bruce was a good patient and his treatment was comparably a lot easier than other people’s might be, but taking care of yourself, getting out.
If you have somebody who’s much more sick than Bruce was, find someone who can be a caregiver in place of you. Give yourself an afternoon or a morning. Go out for a coffee.
It’s so important to take care of yourself. Exhausted caregivers can stress out the patient and you could end up sick too. I know of two friends who were taking care of their partners who were diagnosed with cancer shortly after their spouses passed or finished treatment.
And if anybody asks you what you need, you need somebody to come clean your house. That’s what you need. There are a lot of people who give meals and that’s wonderful, but I felt like I was overwhelmed.
I really needed a maid to come in and just clean the house, do the laundry, and catch me up, because I was exhausted and overwhelmed.
When I hear about someone being sick or being in this situation, I offer to arrange for a maid to come for them.
Guidance on getting through a traumatic experience as spouses/partners
We had an agreement. When we moved six months before and six months after, there was no discussion of divorce or separation because you’re not at your best. The same thing happened with the diagnosis.
It’s just that tough. It’s scary and difficult, and you need to give each other some space, but also give each other that support and love.
Bruce: I think it was harder on you than on me because I felt and I think we agree that our bond got stronger because now we were going through something together, it wasn’t me off at work or her off at her work or volunteering. This was something that wasn’t fun, but we were in it together. I made it through because of her.
Lisa: And baseball! Washington Nationals saved him. They really, really did, because he came home from radiation and sat and watched a game every day. The announcers just made him laugh every day and that made a world of difference. Whenever he felt well enough, we headed out to the ball field. So find something fun to do!
Bringing fun and humor into the situation
Bruce: When we were at NIH, something Lisa did was during radiation treatment in the waiting room with a whole bunch of other guys waiting for the same thing, they weren’t looking too happy or too fun, and she just couldn’t let that happen. So she brought in cards, we had card games there, puzzles, building blocks.
Lisa: Unfortunately, sometimes children needed radiation, too. So they had a whole children’s area and I’d pull out the toys and get people to play them with me. I’m very playful.
Bruce: It really changed the entire atmosphere. People, later, would comment to us how grateful they were when we were in there. Time was passing a lot easier because instead of waiting there staring at the clock, waiting for their turn, we were laughing and having fun, playing cards. We made it fun. Lisa made it fun. It was quite the time.
Lisa: Bring your impish self with you!
Bruce: In this prostate cancer support groups, having the opportunity for these men to take some of the women off to the side and let them meet at the same time but separately to discuss the caregiver part of it, would be useful.
Changes in Lifestyle
The importance of diet
Once we figured out the treatment, then we needed to figure out what we could control. Diet and exercise are the only things you can control. Everything else is out of your hands.
We added kale salads, green smoothies, and more cruciferous vegetables to our diet which are recommended by both authors. We have changed to plant based “milks” as well. Increased organic foods in our diet. Decreased the amount of foods with nitrates and nitrites in them. (I really miss ham).
We stopped eating as much processed food as we did before. Sadly, we have slid back a bit with our recent move and staying home with Covid. It is easier to eat fast foods when you are busy or feeling lazy but not very healthy. We must get back on the mostly vegetarian bandwagon soon. The Flexitarian Diet suits us the most.
Interestingly, I made appointments with a couple of dieticians and have spoke to other dieticians and none of them feel that changing your diet can help you fight cancer.
Their advice was a bit weak. Many of the support participants also attribute their regimens to their continued survival. There doesn’t seem to be enough research on diet and cancer though many lay people can point to the success in improvement in their partners due to changes in diet.
It may be that many patients are not willing to go completely vegan which seems to be the best of anti-cancer success.
It certainly made a difference for Bruce. I worry that our recent diet is detrimental to both of us. It is hard to keep cravings away right now with the pandemic. We have definitely been wanting comfort food. The problem is, it could kill him or us.
Book recommendations
Dr. Serban Schrieber wrote his book after he was diagnosed. His story is unique. He had an aggressive form of brain cancer and was able to manage to survive for a long while due to his research on his and other kinds of cancer.
He looked into what exercise you should do and what foods to eat and what to avoid. For us, we saw Bruce’s PSA stop rising before his surgery.
Sadly, he stopped his regimen when he was on an extended book tour. His cancer advanced. He wrote a great book on end of life. He took care of his readers all the way through his life.
Kris Carr was given the worst type of diagnosis. No hope. She fought back. Some of her advice is woman oriented but still rings true for men.
Her advice on how to keep track of the cancer treatments is so valuable. Her dietary advice, well, we were able to take some of it. She went completely vegan and we haven’t managed that. But truthfully, it has saved her life. Check out her website too. We have three of her books. One is a cookbook.
These authors are inspiring.
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Prostate Cancer Stories
Lonnie V., Prostate Cancer, Stage 4
Symptoms: Urination issues, general body pain, severe lower body pain
Treatments: Hormone therapy (Lupron), targeted therapy (through clinical trial: Lynparza, Zytiga, prednisone), radiation
Paul G., Prostate Cancer, Gleason 7
Symptom: None; elevated PSA levels
Treatments: Prostatectomy (surgery), radiation, hormone therapy
Tim J., Prostate Cancer, Stage 1
Symptom: None; elevated PSA levels
Treatments: Prostatectomy (surgery)
Mark K., Prostate Cancer, Stage 4
Symptom: Inability to walk
Treatments: Chemotherapy, monthly injection for lungs
Mical R., Prostate Cancer, Stage 2
Symptom: None; elevated PSA level detected at routine physical
Treatment: Radical prostatectomy (surgery)
Jeffrey P., Prostate Cancer, Gleason 7
Symptom:None; routine PSA test, then IsoPSA test
Treatment:Laparoscopic prostatectomy
Theo W., Prostate Cancer, Gleason 7
Symptom: None; elevated PSA level of 72
Treatments: Surgery, radiation
Dennis G., Prostate Cancer, Gleason 9 (Contained)
Symptoms: Urinating more frequently middle of night, slower urine flow
Treatments: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Lupron)
Bruce M., Prostate Cancer, Stage 4A, Gleason 8/9
Symptom: Urination changes
Treatments: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Casodex & Lupron)
Al Roker, Prostate Cancer, Gleason 7+, Aggressive
Symptom: None; elevated PSA level caught at routine physical
Treatment: Radical prostatectomy (surgery)
Steve R., Prostate Cancer, Stage 4, Gleason 6
Symptom: Rising PSA level
Treatments: IMRT (radiation therapy), brachytherapy, surgery, and lutetium-177
Clarence S., Prostate Cancer, Low Gleason Score
Symptom: None; fluctuating PSA levels
Treatment:Radical prostatectomy (surgery)