When you’re dealing with cancer, the spotlight is on you. But what happens when your loved one has cancer? For them, it’s just as tough if not more, because not only are they trying to help you and be there for you, they also want to have some sort of normal life, just living from day to day. We don’t get to hear this side of the cancer story. That’s why today you’re going to meet Jill. Jill’s partner had prostate cancer and Jill has some profound insights about what this experience was like for her.
She shares some unique strategies that enabled her and her partner to deal with cancer in a very proactive way, by taking back control, by taking the power away from cancer. That’s what it’s all about, isn’t it?
Here is what we cover in this episode:
- Why it’s hard to bounce back after cancer
- The profound shock when your loved one has cancer
- On dealing with fear and uncertainty
- Having a courageous conversation with those you care about
- Practising gratitude daily
- How some people in your life fade away
- and much, much more!
Joe: I want to start with something we just touched on a few minutes ago. We often have conversations and I feel like we should be recording this, and this was one of them.We were talking about gratitude and how expressing gratitude in the right way can really make you feel better and close the loop in some ways. Can you talk about that in relation to cancer and the experience that you guys went through?
Jill: When Sam was diagnosed with prostate cancer, that was six years ago. It was a huge shock. I think it woke us up. It made me realise that throughout life, we take our loved ones, in particular, for granted. We expect them to be there, we expect them to do things. Sometimes we forget to say thanks. It’s not just thanks, it’s showing your appreciation, that you’re grateful for them, one, being in your life, and two, doing the things that they’re doing and showing you how they love and support you in return. It’s that acknowledgment of their existence, of their experience and your combined experience. It’s making sure that its always at front of mind now.
On a daily basis, I let Sam know how I’m grateful for the things that he does. It’s not being sarcastic or condescending, it’s coming from the heart and it’s like, thanks, I appreciate what you’ve done. It’s showing that type of appreciation. Right throughout life, Sam has always been my rock, he’s been my go-to person. Early in our marriage, we sat, and we had long conversations, as you do when you’re young. We talked about what path we wanted to take as a couple and individually. I always wanted to go on and do study and Sam was interested. That was fine. He enabled me to fulfil my dreams.
He always supported me. We’ve got three kids. When they were younger, Sam became their primary carer at one stage because he was working shift work. It’s like, thank you for doing that, I appreciate that. Sometimes we just forget, and we take it for granted. Yes, this is going to happen and we all get on because we’re all busy living our lives, doing our things, thinking about work, thinking about home, the garden, the kids, finances, whatever. Focusing on the individual and being grateful for them being in your life.
Joe: Exactly. That’s so well put, Jill. I think in many cases, like you say, we forget and start to take things for granted and cancer becomes this big wake-up call. It’s a different modality because all of a sudden, every day is a gift.
Jill: Yes, it is. You actually value the time that you’re having, rather than sitting thinking, “I wish it was next month because we’re going to do this.” Or, I wish it was Christmas time, or I wish it was next year. Yes, it’s fine to look forward to things but still appreciate every day and the gift that you’ve been given. When Sam was diagnosed with cancer, everything became a blur in an instant. Time stopped and all of a sudden, it was like there was nothing there. My whole life flashed before me. One, I was sitting thinking, I wonder how Sam’s coping with this news.
Then I’m thinking, I’m not going to have my life-long partner. That seriously is a wake-up call, especially if you’ve found your soul mate and you’ve built such a strong relationship with each other. To have someone tell you that, “Yes, you’ve got cancer.” While the prognosis is quite good, you’ve still heard that C-word, that stops everything dead in its tracks. All of a sudden, the plans and dreams that you’ve had for the future have to be re-thought. That’s why it comes back to being grateful for each day.
We still have plans for the future, we still look forward to holidays, but we also look at each other daily and say, “Thank you.” It just doesn’t mean the words, it’s by actions and affection and building things together. We’ve built a family, we’ve built a friendship circle. It’s about being grateful for all of that, as well.
Joe: Absolutely. Jill, this is such an important thing, expressing gratitude and living in the moment. How do you do that? Does that come naturally, or did you have to build it into your daily practice?
Jill: Well, Sam and I have been married for 40-odd years, and because we’d gotten into such a routine of expecting each other to be there, you nearly go into automatic. We did have to retrain ourselves to think about bringing it to front of mind. Doing that whole mindfulness thing. Being in the moment rather than thinking, while I was sitting next to Sam, “I wonder what the dog’s doing?” It’s fine to have those thoughts but come back and focus on the person that you’re with and the experience that you’re having at that particular time. It’s those memories that you build as you’re going through are the things that you hold onto that give you hope.
Joe: Absolutely. I even noticed in my own experience, being in the moment and becoming a part of, for example, if I was there with my son, if I was with Michael, when I stopped myself from checking the phone or thinking about other plans and just going crazy with anything, I would have a huge pillow fight. It gave me such a tremendous lift. Life, it became such a totally different experience. Or when I would be with my wife, with Olly, when we would be sitting down having conversation and when we were fully engaged and not thinking about anything else. It just gives you so much clarity into everyday life. I think cancer just wakes you up and shakes you out of things and you go, no, this is what matters and it makes you feel so much better, right?
Jill: Yes. When you’re diagnosed with cancer, it’s like some people look at it as a life sentence, whereas, we looked at it as we had opportunities. We had choices. We could sit and be sorry for ourselves and spend the rest of our days worrying about what was on the horizon, or we could choose to experience life and be grateful for the things that we’ve got and the experiences that we have. That’s what we chose. It’s not easy, it is very draining. I see it from two different aspects, one from the cancer sufferer.
All of a sudden, you’re faced with your own mortality and that’s hard because we’d all like to think we’d live forever. It’s like especially if you’re young, you’ve got your life ahead of you. When Sam was diagnosed with cancer he was in his mid-50s, and it’s like we still had a lot of living to do. He was faced with that and he turned around and said, “I don’t want to die.” From a carer’s point of view, I didn’t want him to die either. We both had this mutual agreement that we were going to live for the moment, without be frivolous and silly, rather than saying, in ten years’ time we do this, we do it now. It’s like, we also learnt that lesson from Sam’s dad. Sam’s dad was a really hard worker all of this life. He worked shift work, he sacrificed everything for the family. We kept saying to him, “Why don’t you take a break? Go on a holiday.” He said, “When I retire, I’ll do that.” When he retired, he was diagnosed with lung cancer and died within a year. He never got that opportunity.
That was a wake-up call for us back then, that was 30-odd years ago, that never put anything off, always do things as you’re going through. Our kids have grown with us and experienced things with us over the years. We’ve got some amazing memories. They’re the things that keep you going in the hard times. When you face the black tunnel sort of thing, where you feel like you don’t know how you’re going to get through it, we draw on the memories and that gives us strength again. Thinking, we’ve actually done and achieved some amazing things with our kids, with ourselves, with our friends and work colleagues.
Joe: That’s very powerful, Jill. I just want to pick up on what you said about choice. That sometimes pain in mandatory but really, that suffering is optional. That we choose the experience and how we deal with tough times.
Jill: Exactly. We sat back and said, okay, it’s not Sam’s fault that he got cancer, but we’re responsible for our emotions and feelings. We’ve taken responsibility for that, rather than putting the blame on we didn’t eat properly or there are too many chemicals in our environment, or whatever. We’ve taken responsibility for our emotions. We’ve got those choices. It’s about taking that responsibility. While cancer at times can dictate how you have to live, you can still choose how you do live. It’s having that support and that friendship around you.
Joe: Absolutely, Jill. In terms of, obviously, from the time of diagnosis to treatment, to the reality of now, there’s a lot of ups and downs that happened. This everyday reality of how you were dealing with it, mentally, emotionally, has that changed over time?
Jill: I still get neurotic. When Sam was first diagnosed, I mentioned that I saw my whole life go in front of my eyes. It took us a little while to come to terms with it. It’s nearly like if we eat this and if we do that, it might go away. It doesn’t go away. It’s there. It’s like, okay, we need to now deal with this. Sam went through treatment and every three months he had to go in and have tests. Leading up to that test, I get really scared, Sam gets really worried. Until you actually get the results from those tests and you go, “We’re okay, we’ve passed this” and you get onto the next one. Leading up to that again, you still get scared and you still get neurotic and you still worry. That even happens today. Sam’s now at 18-month check-ups, which is really good.
I’m always vigilant. With prostate cancer, it can turn into metastatic cancer in the spine. If Sam comes and complains of back ache, the first thing my mind does is go to, “Has the cancer spread?” Yes, it is an emotional rollercoaster going through that, but you have to keep going. I haven’t felt the support from external organisations. I’ve felt the support from the bond that Sam and I have. We sit, and we talk about it. Then, once again, we plan. Well, if it’s this, we can do that, if it’s not, then, yes, let’s go and do something different. It’s around that taking control and responsibility for how your life ends up.
Joe: I love what you say about taking control because I think that’s such a huge thing. For me, it was a big moment when I accepted cancer, because when I had my first initial diagnosis and I had my procedure and I thought that maybe this is it, maybe it’s going away, and I pushed this reality away. When it came back, and I had to go for chemo and all this stuff, it really hit me over the head with it. I realised that it happened because I was denying the reality of what was happening. I was hoping that maybe it’s going to go away, but it doesn’t. It’s about acknowledging that it’s happening and starting to deal with it, having an action plan and executing, right?
Jill: Yes, exactly. Like I said, you’ve got choices. Initially, when Sam was diagnosed, we went through denial and it was like, “This is happening. This can’t be happening.” Then we were really angry, well, why has this happened to us? We’re good people. It takes you on a whole journey of exploring what your values are as a person. Denial, anger, and then you think, “Well, if we eat this way, maybe it’ll go away.” It’s that bargaining. That was really bizarre. We got quite caught up in having to eat organic foods.
We’ve now gone back to eating normal foods. It’s like you try and grab hold of anything that you think is going to make this cancer go away, rather than acknowledging that it’s actually there. It’s not letting it consume your whole life. It’s like, okay, the cancer is part of me, but it doesn’t define who I am. My family, my friends, and the things that I do, and my values define who I am. It’s being authentic to yourself. I think that takes a while to work through. I know it did with us. While Sam was on his three-month checks after his procedure and everything, it took us quite a while to work through it. We were very fortunate that we’ve got a close family circle and we’ve got really close friends. Some of our friends dropped off along the way. They didn’t know how to do it, that cancer word is really scary. What’s going to happen?
Are they going to disappear out of my life? Stuff like that. Some of our friends couldn’t face it and couldn’t talk to Sam. That was really quite sad for Sam, but then the thing that kept him going and me was our close-knit family and our close circle of friends.
Joe: Yes, that’s fantastic. I want to touch on the friends bit. You said that it’s because they were afraid, you feel that they didn’t know what to say, or is that what it is? Is it just the awkwardness of dealing with it?
Jill: It’s awkwardness, they didn’t know what to say, they didn’t know what it really meant. We all hear cancer and immediately we think of death. None of us like to think of death. It’s like they were avoiding the issue. it’s like, I’m not angry at these people, it’s just where they were in that point in their lives. We need to be able to talk about death, dying, cancer, and not feel bad about it. It’s like, it’s a fact of life.
Joe: If you can’t talk about it, then what are friends for?
Jill: Exactly. It’s finding that strength and it’s having that courageous conversation. For Sam to sit down with our close circle of friends and especially our kids, and say, “I have been diagnosed with cancer.” That was like putting it in concrete. It became real at that point. Whereas, up until then, it was like, there was that denial. It might go away. That anger that, why did it happen to me? Once he actually could sit down and verbalise it and say, it’s like, okay. The kids would say to us, well, what’s going to happen? It’s thinking about it, to having a goal, and then that action plan and working through it. Then you actually start to feel like you’re in control again.
Joe: Yes, Jill, I feel that with cancer, and something you just mentioned, when Sam was breaking the news to your kids, what often happens, and I know that this was in my case when I was going through treatment, I think that my mom and my wife were under more pressure than I was. They were really struggling with it more than I was, because the way I see it, if you have cancer, the spotlight is on you. If you, for example, are the partner, not only do you have to be the rock who supports your partner through it, you also have to deal with all of this daily life, and you have to try to maintain some sort of resemblance of normality. How was that experience for you and how did you deal with this all?
Jill: It was very draining. As you mentioned, the cancer sufferer is in the spotlight, and rightly so. They’re the one who’s going through the treatment, but I felt I didn’t have the support. Up until Sam was diagnosed with cancer, we used to share responsibilities. Like, finances, cooking, cleaning, all of that. When Sam was actually first diagnosed, I took over the finances, I took over all the cleaning, I took over all the cooking, I went to work full-time. That was a strain on me. There really wasn’t anywhere that I felt that I could turn. I had to be the strong one because I had to support Sam.
Even now, I’m forever vigilant for how he is. It’s like it’s always in the back of my mind, it’s something that you never forget. It’s like, “How are you? Are you okay? Thank you for being there”, sort of thing. It’s like the carer needs as much support as the person with the cancer, the sufferer. I didn’t feel that there were many organisations or much information for me going through this. When Sam was first diagnosed, the way I deal with things is I read about it and I study. Then I can absorb the information and I can think, okay, well, this is the direction I need to go in. There was very limited information for me on prostate cancer within Australia. I found American sites and Googled all of that.
Is it relevant in Australia? I had no idea. It’s like, the statistics that they were giving, are they the same type of statistics in Australia? Possibly not, I didn’t know. I still don’t know. You can get caught up too much in, yes, you’ve got a life expectancy of five years, or ten years. The percentage of people who die within those times. If you let that dictate, you’ll miss the life experiences as you’re going through. It’s like, okay, I need to be responsible for myself and how I can be strong. I do, I breakdown every now and then, but I’ve got, like I mentioned, that family support, and our close friends. Being able to talk about it with somebody helps share the load.
Joe: How do you talk about it? Sometimes it’s a hard thing to bring up. How do you talk about it? What do you do?
Jill: When Sam was initially diagnosed, when we sat and told our kids, we were sitting around the dinner table, as we do every week. We’ve got this relationship with our kids, where everything is open and honest, and we discuss the good, the bad, and the ugly. We sat, and we said, we’ve got some hard news to tell you. It was, like, take a deep breath, here we go. Sam actually told the kids. It was coming from him and I was there. Then we all sat and cried. All gave each other a hug and said, “Okay, what are we going to do about this?” It was getting that support initially. Having that courageous conversation and then having that support around. When I’m having a hard time, I sit, and I talk to my kids. They’re all adult. I talk to my friends.
I do tell them that when Sam is coming up for his next round of tests, I get really worried. I do tell them that if Sam has aches and pains in his body, I do think, “Has the cancer spread?” Our friends now do the same thing for him. If Sam is saying, “I’ve got a really bad back today”, and I say, “Have you had that checked?” What can we do to help? Do you want us to come around to do the gardening and stuff like that?
Joe: That’s the way.
Jill: Yes. It’s sharing the experience.
Joe: Another thing you made me think of, and I’m no expert, but I was watching a documentary one day, and I saw this antelope or a zebra, it ran away from the lion, and as soon as it escaped, it started shivering, it literally started shaking. They said that this is how this animal processed all of this fear and tension that was inside it. I think that as human, they don’t really do that enough. What you talked about, it’s okay to break down and cry because you have to let it out, right?
Jill: You do. You need to be in touch with how you’re actually feeling. You need to be able to express those feelings. I’m sad, I’m scared, because once you’ve shared it, once you’ve verbalised it, it helps you deal with it. Or at least that’s what we found in our experience. Initially when Sam was diagnosed with the cancer, I was really run down because my whole focus was making sure he was living. I took on the responsibility for everything initially. I found that I got colds and flu and bronchitis that I had to take a step back and say, “I need to look after me, so I can care for Sam.” Now, he wasn’t an invalid, and he’s not an invalid, but it’s that whole mentally draining experience.
I do. I look after myself. I have to make sure that I’m well. I mediate. I do, and I get stressed. I’ve got work pressures, I’ve got family pressures, financial pressures. All part of life that I’ve got into the habit, where I mediate before I go to sleep each night. I sit, and I have ten minutes, just for me, to clear my mind. Sometimes I even go through an action plan in my head, because I can’t help doing that.
Joe: I’m not surprised.
Jill: Then it helps me relax and once again, I’m responsible and I can be in control of how I act and how I deal with things. It’s really important, especially for the carer, the sufferer needs to find something that will give them hope, so that they can hold onto that. The carer needs to find something to give them support and calmness to be able to deal with the things that you’re going through.
Joe: That’s very profound, Jill. Especially the part about putting yourself first and finding a way for you, first and foremost as the carer, to find a way to deal with it, to deal with pressure. You mentioned meditation. How did you get into that? I think mediation and mindfulness are some of those things that we all hear about, but they can be hard to put into daily practice. How do you go around doing that?
Jill: I do a lot of reading. I’ve done study on all sorts of things. That when I find something that I think might be of interest, I’ll explore it even further, then I will try it out. I’m the sort of person that I need to take the theory and then experience it. It becomes practical for me. Mindfulness, that was really an interesting topic for me. I did, I read about it and I’ve tried to do it. You need to be disciplined in yourself. It’s like I keep having to remind myself to be present in the moment. You don’t know when the next moment will be, and cancer is that wake-up call. I think people generally today are so caught up with living and busy lives that we forget that you need to be in the moment.
You do, you need to be disciplined. I read a lot, so that helps me explore different things that work for me. Like, when I say I do mediation, I’m not some strange hippy that goes off and sits naked in amongst trees, but if I’m really stressed, I find being outside gives me solace. It helps calm me down. Sam and I, each week, make sure that we go out and experience parks or trees or nature or the beach or something like that. There’s a calmness, a stillness about it. It reminds you that things just go on. That’s part of the mediation, as well.
Joe: Yes, absolutely, just making it part of your everyday experience.
Jill: Yes, experience.
Joe: You touched on having practical things that fell on you. I think you said that you didn’t really have much help as you would have liked. Do you think it’s okay to ask for help? Would you have done that differently if you had the chance?
Jill: Looking back, yes, I would do it differently. We’re all very proud. No one likes to think that my partner, my husband has got cancer. Have I failed as a wife because he’s got cancer? You become introspective and you think, “What can I do? I need to do something to make this right.” Whereas, looking back, I should have reached out more. I’m sure there are resources out there, I still haven’t found them. I’m sure they’re there somewhere, but it was me that didn’t reach out.
I could have gone back to our oncologist, and I did a couple of times, and what I got was, “Don’t worry about it.” That is superficial. I needed more information so that I could understand, so that I didn’t have to worry about it. It’s overcoming your personal inhibitions to be able to say, “I need help.” From a carer’s point of view, you’re so focused on the sufferer that you don’t want to have to see that you’re needy, so you don’t necessarily say, “I need help.”
Joe: That’s so true. I remember that we had friends saying to both my wife and myself saying, “Just let me know how I can help.” I remember that was such an infuriating experience because you kind of go, “Well, I wish you would be a little bit more specific and offered something helpful and practical.” I’m not going to just come up with a favour to ask you. At the same time, I guess people want to help but they really don’t know how. They really need to be guided sometimes, right?
Jill: They do. You need to find the inner strength to be able to say, “I need somebody to help me do the gardening. Or I need somebody to take the dog for a walk. Or I need somebody to help me with the cooking” or stuff like that. It’s finding that inner strength. As I mentioned, your pride gets in the way, because we all like to think that we’re able to do things and you struggle to say, “I need help.”
Joe: I really want to thank you for your time. It’s been absolutely fantastic.
Jill: Okay. Thank you, Joe.
Joe: Thank you.
Jill: Good luck on your journey.