In this conversation, Lauren Hulsey shares what it was like to support her husband, Tom, after his prostate cancer diagnosis. From initial shock and fear to becoming his advocate and steady source of support, Lauren reflects on the challenges of helping him talk about his diagnosis, navigating difficult treatment decisions together, and why caregiver support is so important for both patients and the people who love them.
Well, when Tom came to me and told me that he was sick and he had prostate cancer, he'd been to the doctor. And when he told me that for the first time, first of all, I was stunned. And for a moment, I thought they must have gotten something wrong because if there's anybody who couldn't be in better health, it's Tom. And he's so over obsessed with health and these are the kinds of lifestyle that we've always had. But what he told me was the PSA was trending high. And all of a sudden, when he's talking through this, I could just see the raw seriousness of his face. And I knew right then that it was serious. And we were just going to have to move together and work together and learn together. But he had just seen his best friend die from prostate cancer and I think that's what hit him the most.
And it was a matter of for me to learning what was happening to him. My goodness, there's so many acronyms and language that people speak that I just didn't know. And I thought the best thing for me to do was also learn those terms so I could help and support him. And it was more about doing some research on my part. The only way to be able to support him is to be there and to be present.
Even if it's just taking notes from the doctor, a lot of times I would even record the conversation so we could listen to it back what the doctor said, which that really helped us to be sure that what we heard. I was trying to be there the whole time, but sometimes he would get completely bottled up. He just didn't want to talk about it anymore for a good while and that was hard for me.
But I finally had to put my foot down and tell him I can't help him if he can't tell me what's happening. And eventually he came truthful and told me how that he was feeling about it all. It was just his natural way. He just wanted to just to bottle it up and not talk about it. He thought maybe it might go away, which we know that doesn't happen. So I was just glad he opened up about it to help me too.
Back then, this is 10 years ago, we did not have advocates. We didn't have a caregiver support. And that was really kind of hard on me not knowing what... I didn't know what I missed, but now that I know this, I would highly suggest to anyone that is going through this at this point to please connect with the caregiver's group, a care survivor. It's just the most important thing because they will know how to help and guide and support you the most.
But that was probably the most important thing that Tom was going to be very comfortable with his new doctor and he was. Well, he decided with his doctor, the plan was to do a robotic remove of the prostate. Tom was at a point where he just wanted the cancer out, didn't want to have to go through radiation.
I was there with him when he met the doctor, and it was very important for me to be there as well. Again, taking notes and learning things and asking just as many questions as he did, it was important for me. But we landed on what we thought would be the best solution. He just wanted it out. If it's the prostate that needed to come out, he was all good with it, and I supported him 100%. A lot of discussion beforehand.
There definitely were some side effects. He was very uncomfortable. And I had to put my stone face on and put my foot down and say, "Look, I would rather have you the way you are than not being here at all, so you have to fight. You have to change your mindset and you've got a family to take care of and we're not going to let you go any earlier than when you're supposed to." So it was a little bit of a fight.
Navigating for myself, I just had to go on my intuition about things and make sure that we had, when trying to navigate something you haven't done before or what to do next, I did some research and looked it up online and things like that, but it wasn't really the same. It's just about the way I felt what I needed to do or what I felt would be a good help for him.
But I have to say, honestly, sometimes you don't think about yourself. You've got more things to deal with and make sure that they're comfortable and getting all the things that they need. Sometimes we do come second, but I knew when it was to move back for me. I knew exactly when it was time to take off. And when he was doing well and everybody's going to have good days and bad days, but I wanted to make him feel safe and comfortable. And then I would take a little time and do some reading and things like that.
The most challenging part was the recovery. No doubt. This is, I think, mentally for him and physically, this was very difficult for him. Tom is the one who's out running 10 miles a day and eating always very well, which we've always had a very healthy home life with our food and the things that we choose to eat. And that's why it took me so aback when he told me that he was sick or this is what was happening to him.
Actually, for me, what impacted me most was for my own anxiety, I think, because I didn't know what was going to happen next. I didn't know what was the next step after the surgery, if he's going to get better. That was one of the things that sort of kept me in the loop. I mean, I just got a little more anxiety than... So I just had to talk to myself and do some more reading or read something that was always going to be very nice and light or things like that and just keep talking to him. But I can see how for so many women that might really be so tough.
Well, this journey has been long, but also fulfilling to a degree because I watched Tom when he was not well go through the anxiety and the nervousness and everything else that goes with it, along with his best friend who passed away right before our eyes.
My advice for somebody that's just now realizing what's really happening with husband and wife on the prostate issues, I would highly suggest finding a care group, a care support group. I think that was... Because you're going to hear different things from different people, but you have to really take it all in and then you'll have more questions and then you'll come to meeting or meet somebody, even if it's for coffee, but you also have an opportunity to get it out and talk and learn at the same time.
Not everybody's situation is going to be the same, but having somebody to talk to who's been through it would have been wonderful for me because I was holding all of this in, but at the same time, how do I release it? I'm just going to keep a stone face. I'm going to act like a robot and get things done. Well, it takes its toll on you, the caregiver, the co-survivor, but being able to talk about it to somebody else will really give you a good opening to how you might feel. And then you'll know things will open up even further once you start talking about it. Very happy that Tom's still with me and now he's also an advocate and writing articles and things about it. And people ask him, he'll come and do a talk to a group or something. And I love that he does that because it makes him feel good that it was all worth it.