Conversations on Cancer is a 6-part mini-series on the Relationship Matters podcast focusing on finding Right Relationship with life-threatening illness. Across the 6 episodes, Faith Fuller and Katie Churchman talk with survivors & caregivers from around the world about their relationship with life-threatening illness. In this episode, Katie talks with Marita Fridjhon and Daphne Taylor about what it means to be in right relationship when one is a caregiver.
Daphne Taylor is ORSC faculty and was Front of Room and certification faculty over a period of 13 years, and is now part of the team producing CRR Global’s new Systemic Supervision program. Her husband, Paul, was diagnosed with terminal brain cancer in 2015 and given 12-18 months to live. They had been married for 34 years and had a strong, loving relationship and were just emerging from the years of child-rearing to planning exciting adventures ahead. Paul lived for 18 months and died in a hospice, just after his 60th birthday in 2017.
Marita Fridjhon is co-owner and CEO of CRR Global and mentor to an ever-growing community of practitioners in the field of Relationship Systems work. Her business and life partner Faith Fuller was diagnosed with stage 4 Uterine Cancer in September 2021. She is currently in remission.
Conversations on Cancer is a 6-part mini-series on the Relationship Matters podcast focusing on finding Right Relationship with life-threatening illness. Across the 6 episodes, Faith Fuller and Katie Churchman talk with survivors & caregivers from around the world about their relationship with life-threatening illness. In this episode, Katie talks with Marita Fridjhon and Daphne Taylor about what it means to be in right relationship when one is a caregiver.
Daphne Taylor is ORSC faculty and was Front of Room and certification faculty over a period of 13 years, and is now part of the team producing CRR Global’s new Systemic Supervision program. Her husband, Paul, was diagnosed with terminal brain cancer in 2015 and given 12-18 months to live. They had been married for 34 years and had a strong, loving relationship and were just emerging from the years of child-rearing to planning exciting adventures ahead. Paul lived for 18 months and died in a hospice, just after his 60th birthday in 2017.
Marita Fridjhon is co-owner and CEO of CRR Global and mentor to an ever-growing community of practitioners in the field of Relationship Systems work. Her business and life partner Faith Fuller was diagnosed with stage 4 Uterine Cancer in September 2021. She is currently in remission.
KC – Katie Churchman
FF – Faith Fuller
DT - Daphne Taylor
MF - Marita Frijon
[Music intro 00:00 – 02:57]
FF – Welcome to Conversations on Cancer. My name is Faith Fuller and I’m one of the founders of CRR Global, along with Marita Frijon. The following is a season of podcasts with different cancer survivors about creating right relationship with a life threatening illness. We want to acknowledge right off the bat that this topic can naturally bring up a wide variety of feelings for all of us. For this reason we want to give a trigger warning about the content of these podcasts before you continue. We’re going to be presenting interviews with cancer survivors or their caretakers and each podcast is a very personal story about one journey with a life threatening illness. Everyone’s story is different and the speaker’s experience may be very dissimilar to any health journey of your own. In the spirit of deep democracy, please honor this person’s experience and also honor your own. Every voice is one voice of the system. Honor what right relationship with illness means to you. Medical disclaimer: these podcasts are meant to share the personal stories of cancer survivors. The stories are not intended to provide medical advice of any kind. Any questions regarding a user’s personal medical condition or their medical care should be directed to their medical care physician. Thank you.
KC – In this episode I’m talking with Marita Frijon and Daphne Taylor about what right relationship means when one is a caregiver. Marita Fridjhon CEO and co-owner of CRR Global and partner or Faith Fuller who was diagnosed with stage 4 Uterine Cancer in September 2021. She is currently in remission. Daphne Taylor is ORSC faculty and was Front of Room and certification faculty over a period of 13 years, and is now part of the team producing CRR Global’s new Systemic Supervision program. Her husband, Paul, was diagnosed with terminal brain cancer in 2015 and given 12-18 months to live. They had been married for 34 years and had a strong, loving relationship and were just emerging from the years of child-rearing to planning exciting adventures ahead. Paul lived for 18 months and died in a hospice, just after his 60th birthday in 2017. My name is Katie Churchman and you’re listening to Conversations on Cancer.
KC – Daphne, Marita, welcome to Conversations on Cancer, this special mini series that Faith has devised as part of Relationship Matters.
MJ – Thank you Katie, it’s always a pleasure to sit with you, and Daphne too, share the table with you , and this one is a different honor and privilege.
DT – Yeah and thank you Katie, you know, it’s such an important topic and it feels like so much honoring in having this conversation and to be able to talk about things that often people find difficult to talk about, so thank you, thank you both.
KC – And I mentioned this is Faith’s special podcast and yet she’s not going to be here for this episode and yet as we know she will be very present in this conversation, as will Paul, your partner Daphne.
DT – Yeah, and that’s part of the honoring. They are the reason we’re here and having this conversation so it feels really special that we can actually talk about it and bring to life some of the things that people are not always aware of what we deal with.
MF – I also think, previously in the conversation just before we started talking, Katie, you also talked about that Faith will be a ghost here because she initiated this when the universe initiated something with her, called cancer, and that impacted all of us and so the whole term of ghost is something that I want to revere in this situation because it really is that presence of somebody that is really important, so important. And in essence they’re still with us, even when they’re gone, even when she’s not here in this call right now, in essence you bet your last dollar she’s right on my shoulder, she’s here.
DT – Yeah, I almost have that sense of oh thank goodness, I’ve been wanting you to talk about this for such a long time and now you’ve found a place to have your voice so, you know, thank you to Faith for being such an initiator of this.
MF – That’s so interesting Daphne and I want to also honor the difference in our journey as we sit in this now, in this moment, where your journey with Paul as care giver is completed, and you had a wonderful story in which, that I will leave to you, about becoming his wife again and mine is not completed so we’ve just had good news and there’s a next layer of the journey that we’ll find is near start. But I just, I’m aware that we’re sitting in different chairs and I so appreciate sitting with you in the chair of having completed that journey.
DT – Yeah. Thank you, Marita. I mean that story was such a precious one to me because I had pretty much got to the end of my tether when I rung the McMillan Cancer Care nurse and she did say to me well I know it must be bad because you never ring me. And she said right, we need to get Paul into the hospice, she said then you can go back to being his wife and you don’t need to be a caregiver anymore. And that was such an emotional precious thing because I’d sort of forgotten the role of wife being left behind and that is part of the shift when you become a caregiver, you know, there’s so many different layers as you alluded to Marita, the shifts and changes with treatment, with testing, with change in circumstances, it’s a constantly moving thing to be dealing with so it’s never still.
MF – That sentence, it’s never still, touches me as well because for me, and I don’t know what that meant for you really but for me there is something about, on some level on a constant alert.
DT – Yes.
MF – Because you’re not sure. It’s not because, I think we also had a long conversation between Faith and myself about the difference between caretaker and caregiver, it’s not about taking over as in caretaker, there’s aspects of that that shows up sometimes, but it is from that caregiver perspective, it is being aware and on the lookout because what happens next is not predictable and I think that is part of the stress.
DT – Yes. And what you’re talking about Marita is the fundamental change in the relationship with the person that you’re a caregiver for. So if it’s a spouse or a life partner, that is a changed relationship, it’s no longer the same relationship.
MF – I’m curious because I know your journey was very different as well Daphne, and you know Faith better than I knew Paul, but what I knew of him was he was an amazing man. And I’m curious about how the journey was slightly different because one of the things I am aware of is in the third entity that is Faith and Marita, in the profiles, Faith is a contributor, she contributes, that’s her why, is to contribute. And when disease like cancer hits, it pauses the contributor. And then there’s something that starts in the dynamic between us, that becomes part of that 69% perpetual issue of this part of the journey is how do I give care without Faith, the contributor, feeling like she isn’t worth anything. It’s a dynamic that happens there that is something that we often talked about and it was easier in the first 5-6 days post chemo because there really was kind of response and reaction to chemo that takes some of that away because there really is no ability. But then there’s a catch up after that as well, yeah, I’m ok, I can do this. So you can see how it plays out differently and I’m talking about a different phase from where you are but I’m curious about how some of that played with you.
DT – Well, a very similar experience Marita because Paul was a provider, that’s what he did in our family, he was a very traditional male provider and his disease was brain cancer and so this is the challenge of being the caregiver, how much did I allow him to carry on providing? And I quickly realized that as much as possible I would let him do but we had some hilarious situations where I can laugh about them now. He was sort of living his bucket list life so he would be booking tickets online to, you know, Bruce Springsteen concerts, Rugby world cup, everything, and we went to see Rod Stewart at an arena, he booked the tickets, he booked a dinner, he’d organized it all and all I had to do was drive but when we got there we walked in and he’d booked some very expensive seats and they said oh you’ve missed the meal and I go what meal? Because I’d let him book it and he’d forgotten. I didn’t check the tickets. So it created some hilarity but in some ways I still allowed him to do as much as he could. But we turned up once to a restaurant booking in London and they didn’t have the booking and I’m like oh, ok, he told me he’d booked it. And I’m trying not to say but he’s got brain cancer, you know, because that’s one of the things that you realize it’s just what’s happening and we roll with it.
MF – That’s fascinating because you talk about bucket lists, I think there is nothing like the threat of death or cancer that scores up bucket lists because we have this, we have a similar situation with Faith as well who’s the bucket list of all the things that haven’t happened and we haven’t done, and then that whole thing with sometimes I can’t do anything because I’m still fulltime engaged in the company and she’s not, you know, you could see how… it just changes the relationship dynamics enormously. That, I think, is one of the most challenging parts of the caregiver role, in my experience, is how to meet, we’re all terminal, but how to meet the dying partner where they are.
DT – And it’s an unknown, it can change from day to day and that could be because of the treatment they’re having or the type of disease they’ve got or just their emotional state and how they’re dealing with it so I think that is one of the really challenging things, it’s today it’s this and tomorrow it’s not this, it’s something else and when you’ve sort of been in a settled relationship with someone for quite some time, you know, it just has it’s rituals and it’s norms and the way it flows and suddenly that’s sort of all gone, really. There might be glimpses of it. And so it’s quite unsettling I would say, it sort of sometimes feels like the rug’s been pulled from under your feet, you’re not quite sure where you are.
KC – I’m sure the rug and then the floor beneath the rug feels like it’s gone and I’m just starting to realize that the caregiver role isn’t just a functional role in terms of the outer role, it’s very much an emotional role to and it seems like cancer snatches so many other roles of who you were and how you feel as a person, those parts are gone suddenly.
MF – I think that’s a really good observation, that both you’re pulling the rug out but the floor underneath is not quite there either. And then the roles that got changed. It was such an entity piece that I realized there was something that you said that I really wanted to respond too and now I can’t remember what it was – that’s part of what happens.
DT – You know, I started to think about some of the roles that shift and you know, one minute I’m allowing Paul to be the provider, as we said, let them be a contributor, provide, it’s important to them to have as much of that. The next minute I’m protector because he’s a bit frail and we’d walk down the street and he had a walking stick and people would knock him over! So suddenly I have to muscle up and be protector which was not a natural part of our relationship, he was always the protector of me so, the shifting in roles and the adapting. And one thing I did want to say is, maybe a slight shift in topic, but it’s just come to me – there is something about the acceptance of the diagnosis. So the relationship with the diagnosis, and in my situation Paul was sort of in denial for most of his illness. Or at least he thought he could beat it and he was determined so for me, I had already lost a sister from brain cancer so I pretty much knew what the outcome was likely to be and I knew medicine hadn’t changed that much, so I found it really difficult to live with his version of the diagnosis because I had a different version of it and it caused a lot of tension between us.
MF – That’s so interesting Daphne because I think that’s a critical observation, is how do you…. there is rank, what we talk about is rank, you know power, in being caregiver, but there’s also rank and power in being the terminally ill partner because it’s when is it that we allow the protector in us, because I have a pretty strong protector, I call it my Mama Lioness. When do I allow my Mama Lioness to come out and protect and when do I calm her down and take a step back and allow full execution of what Faith wants to do or work with it, or come to terms with it? Because the coming to terms with the diagnosis, it really is a third entity journey and we cannot be at the same, we’re not at the same places. We can’t expect to be.
DT – No. And so what you just spoke about, Marita, to me it sort of encapsulates the role of the caregiver or the relationship with being a caregiver, it’s shifting sands, it’s trying to navigate it with the third entity and feeling your third entity now feels completely different, and navigating these roles that are suddenly being… you know, do I bring this role up, do I hold it back and allow that? So, it’s like this constantly moving thing that you’re navigating almost minute by minute some days.
MF – I think that’s the fatigue, we haven’t talked about fatigue for caregivers and I think that there is a deep fatigue that is this piece that is the constantly navigating something, what is here now? Because I cannot anticipate that it will be the same in the next moment. And how to manage that in me, myself, so that I don’t overdo that and drive both of us crazy, just exhaust myself to a place that I can’t be of no help. That’s not an easy call for any is it?
DT – But it sort of brings me to the place of, you know, how are your relationships, our relationships with being caregivers? How does that allow or encapsulate allowing people to take care of us? Because in some ways there almost isn’t space. You say you’re running a business and you have a role of caregiver, you know, where do you find space to say let someone take care of me? Or even the bandwidth for it because there’s such fatigue that unless people are very skilled at just showing up with something and quietly taking care of something for you as the caregiver, it becomes too much to kind of say I need help, I need help here, I’m too tired.
MF – That’s such an important piece, I don’t know how often people talk about that. Because I think that, something that you just said, the most valuable friends or colleagues or whoever they are, are the ones who don’t necessarily call to have a conversation but who shows up with something. We have an amazing neighbor who, every now and again she would just say we are ordering takeout from bladiblaa and remembered that you both like this and this so just expect something will show up at your door or I will bring it across, it’s that kind of thing, it’s the forward thinking in terms of what is needed and that, I don’t…. I’m aware of how often we take our friends and neighbors for granted but in a moment like these, experiences, how precious that is and how much privilege that is to accept an experience.
DT – Yes, so there’s almost like another role of caregiver of caregivers.
MF – I notice I get shy when I hear that, it’s like yeah, absolutely please! Yes.
KC – I wonder if there’s something also about the person with the illness being in the spotlight, I’ve not thought much about the caregiver role if I’m completely honest and actually it’s a whole, it’s a whole role switch for you and I wonder, and this might be the wrong question so apologies if it’s unskillful but did you feel like you lost a part of yourself during that time, either of you?
DT – I certainly did. It took a long time for me to find myself again afterwards. Part of that was because of the grief process that I was in. But I had very little sense of myself because so much of it was about doing or protecting, I was keeping certain people away, I was listening to my husband tell his mother on the phone that he was absolutely fine when we’d just met the consultant who said his tumors had grown and I was like ahhh. Giving family medical updates. So there’s just not a lot of space for yourself. And I mean, for a while I certainly carried on doing some work because that was the place that I knew me. It’s very grounding to know yourself, but there came a point ultimately where I wasn’t able to carry on doing that, I needed to give more time to the caregiver role.
KC – How long Daphne were you in that role?
DT – 18 months really. So he had 18 months and he was quite well at the beginning but then, you know, he would have a lot of seizures in the middle of the James Bond film and 5 minutes from the end when all the lights go on and call an ambulance because then lots of people are trying to kind of say oh I think he’s had a stroke and I’m saying that’s part of the protector role, but he’s got brain tumors. Oh no, I think he’s got signs… and I was fighting for him and then they wanted him taken to a more remote hospital and I knew they didn’t have a neurology ward so that brought up, even quite early on, I had to suddenly do the fighting bit when he wasn’t well. But then I had to step back very quickly because suddenly he’d be well, he’d be doing work calls and booking another concert somewhere. But it’s that sort of navigation of one day to the next that we mentioned earlier.
MF – Wow, that’s so powerful and it really, you can also see how the caregivers journeys are so different depending on the diagnosis and where you are in that journey.
DT – Yes.
MF – So when there is a little bit of what your journey, as you describe it Daphne, there was in the beginning in Faith’s diagnosis that it looked a little bit like that. And then other research and different pieces showed up and we are now sitting in a situation that is known as NED – no evidence of disease – and now it’s a different part of the caregivers journey is will it come back? When will it come back? Where will it come back? And how do I not allow any of that to now take hostage of something which can be and is a return to something that is a little bit more like what we had and deeply, deeply appreciating that and enjoying it whilst we have it. So it’s a very different journey depending on diagnosis and for everybody sitting in these chairs.
DT – And I think that’s really key because, you know, there’s so many different disease out there. But I think the other thing Marita is that it depends on your relationship with the person as well, you know, not all of us will have the same relationship, however long you’ve been with that person. And so it will evoke different things in us when they have a life threatening illness.
MF – Yes, and well, again, I think the piece that you’re talking about is how each one of us has our own history with death and with what it means. SO it’s like the myriad of internal selves of me, the caregiver, meeting up with the myriad internal selves of the patient or my partner and that by itself is chaotic, and that is the place where how do I ensure that I have support and space in which I can work that stuff. And at some point you don’t have it because it’s too critical but I think for anybody that sits and thinks it’s not, we all have a version of it’s not going to ever happen to me, it’s going to happen to all of us when we are either side of the coin, it’ll happen. And there’s something about planning, I know from my years as a medical social worker and I think that it’s my history with death and family that had me become a medical social worker and work on terminal wards for 5-6 years, is that piece about how do you prepare? How do you make sure that by the time you sit in that there’s enough support and there’s enough that you’ve already completed that you don’t have to do in crisis. It’s a whole other piece.
DT – I think what you’ve reminded me as you were speaking there Marita was also the sort of concern of family and friends and people around and how you navigate the multiple channels of people enquiring and wanting to be there, that requires another role from the caregiver, navigating and managing the care that people want to throw to the ill person. And now there are so many channels that these messages arrive in…
MF – I know, I know.
DT – It’s a kind of whole other job in itself and working out that you can’t answer every single message. Sometimes, one of the things I worked out is sometimes you’re actually trying to comfort people who have been triggered themselves by the diagnosis or illness and it’s triggered, like you said, some history with their relationship with death. And there is a limit, well there was certain a limit to my capacity to deal with other people’s triggering and trauma arising. I began to lose compassion, a little bit, because of the fatigue.
KC – Sure.
MF – You talk about something that I don’t think any of us talk about enough and that is how to, that part of caregiver that is the navigating other people’s response and the impact of the news and the information on other people that now don’t want to go to the patient, comes to you. And that’s a whole, and that is a place where caregiver becomes caregiver also to other people and sometimes that feels a little bit more like the caretaker role other than the caregiver role.
KC – I wonder about this caregiver of the caregivers and Daphne, I wonder if you could talk more about? I remember we were talking offline and you said some friends changed during the time because they weren’t the same with you during that. So if it’s alright…?
DT – Yeah. It’s quite amazing, remarkable indeed what a life threatening illness can throw up in other people and I haven’t expected that. So some people are very uncomfortable with it, some people were so uncomfortable that they sort of disappeared which surprised me, and some people just found the perfect place to do what your neighbors do and just showed up with something quietly, effortlessly and appeared. But there were other people that perhaps thought I was too negative or, I was quite happy to talk about death, for me that was a given, like Marita said, we’re all going there so… it was just coming sooner. And in fact, Paul had planned all of his own funeral. He disappeared off one day, I thought where’s he been, I had him on a tracker because that was a really good way of allowing him to go off and be free but if he didn’t reappear for a couple of hours, and he didn’t, so I was tracking him on my computer. I was like what’s he been doing at the church? Oh I’ve just been chatting to the vicar and organized my whole funeral, I thought oh very good, that’s wonderful. So I could have that sort of conversation with some people but other people would llike talk round the subject, like how are you really? And if I said I’m absolutely terrible, I’m exhausted, I’m fatigued and I don’t know if I’m coming or going, they didn’t know what to say. It wasn’t the answer they wanted. They wanted me to say oh yes I’m managing fine thank you and I’m like no, I’m not actually. I’m not managing fine. And one of the people that I had the best conversations with was Faith. Faith just showed up for me and said let’s talk about death, dying, illness, whatever you want to talk about. And that hour I had with Faith every now and then, well, regularly, was just so precious because that was a real conversation.
MF – I’m so glad that you mention that because I do think particularly in our Western world it’s almost like we had a God-like complex that we’re not going to die or something and that tender conversation that is about sitting in the consideration of my own finiteness and our finiteness together, is a very different conversation when you’re sick with a diagnosis and you’re sick with a final awareness of the reality of the final life stage journey.
DT – I think, Marita, one of the things, I mean, it can sound a little petty when you say it but I got fed up of hearing about people’s cats or mothers that were dying. You know, it’s like there is no comparison. I’m not measuring people but it doesn’t help me to know that your cat’s just died, it doesn’t make me feel any better thank you. And I realize that it was people’s sort of ineffective ways of trying to show some empathy with me, but at the time I didn’t feel that because, again, the fatigue and the exhaustion means you’ve got no bandwidth, or at least I didn’t. So I would actually get really grumpy and just like ergh, do they think I want to know about their mother dying? She’s 90, you know? If I’d had less tiredness I would have been able to understand and certainly in retrospect I understand what their intention was, but it was hard for me to hear that. I felt as if it wasn’t really meeting me where I was.
MF – You know, I think that one of the things I so agree with you there is, for anybody else who’s listening also and are on this journey, it’s ok to be grumpy. It’s ok to be fatigued. And just pick the people and the places where you can do that. Because I think that… one of the things I would say to my team or to Faith and I had to be careful because I couldn’t do it during the time that she’s on chemo, but there are times where I could say ‘I’m not fit for human consumption. I’m going to go out and take the dog with me and just get out’. Because I’m not fit for human consumption and if I stay it will become about Faith or the colleague that I’m talking too or whatever, so it’s like in that place of… I’ll never forget Kubler-Ross, a session that I was in with, we were training on the stages of grief and we talked to her and actually said one of the things that was so difficult for her is that patient, the family, how often people are screaming at God and that’s just not ok. And Kubler-Ross looking at the person and say let them scream, God can take it, it’s us that can’t. Also that permission, let yourself scream, God can take it, they can’t. It’s just that place where authenticity is to know what I can do and what I can’t do.
DT – And I think what we’re sort of saying is that managing other people is an extra layer that really you don’t have, mostly you don’t have the capacity to deal with. And part of that is the culture that many of us have grown up in and the way our Western culture has encouraged us to sort of sanitize death and grief and terminal illness and all of that. So it becomes deeply uncomfortable for people and we’re not educated in having the conversations. I mean it’s wonderful to know that there’s things like death cafes, death doolas, sort of becoming a little bit more present in the conversation, but I think much more is needed and wonderful that we’re able to talk like this now.
MF – I think one of the other things, we keep on talking about friends and I don’t know what your experience was but one of the things that I’m aware of is that Faith and myself, we have such a strong third entity out in the world. And for me sometimes, in my own puniness, I’m sitting as the caregiver in something where it’s like so if I yell at people who love the both of us and now it feels like I unfriend them and Faith is gone, will I then be totally alone? So it’s that place also where as a, if you think of yourself as a survivor and who knows, I might not be a survivor because a car can hit me down the street. It’s that place of your own self care is what is it that I protect so that I can stay relatively whole post this? And what is it that, if it’s just… even if I say it and as I say it now it feels like a selfish statement, but there is a place where I’m in touch with my own mortality. And sitting in the same awareness with the person close to you, my partner, doesn’t take my awareness of my own mortality away, it makes it real. And those are difficult places to be in and it’s been one of my top places, sitting as quote unquote ‘survivor’ or caregiver, whatever the role is.
DT – It really brings it starkly into your awareness, is your own mortality when you’re watching somebody else having treatment and life threatening illness. And however it turns out, that has come present into you and it’s, you know, it’s another thing that we have to navigate, deal with, work out. And I remember for a while I would walk around the house going oh well, when I’m dead someone will need to sort all this house out so I’d better start doing it now and I was like hang on a minute, but I do have moments like that.
MF – Yes. Yeah. Absolutely, absolutely.
KC – I just realize how really quite isolating, thinking about your land and how this cancer bomb comes in and obliterates so much of normality, but then people not even willing to step in, even if they have no sense really of what it’s like, they’re not even willing to try. I think that’s what struck me from, particularly Daphne, you were saying. Is isolated the right word?
DT – Very much so, Katie, because it’s not within a lot of people’s experience, a lot of people haven’t had the experience and so they don’t really know how to be with it. And one of the memories I have is Paul’s family who I’ve always loved dearly, but they were actually frightened of his disease, it did change his personality and that was difficult because I was ultimately living with someone that wasn’t the same person that I’d married and knew so well. But they would come and visit when he was in the hospice, and I thought they’d come to help out, give me a break because I was spending 12 hour days at the hospice and not really having time to do anything else, and they wouldn’t go on their own. And I said oh well you go and visit him, and I’m thinking… and they hadn’t come for that and they would not go and visit him on their own, and even sitting in the room with his brother and his sister and his mother was so uncomfortable, they just talked at him the whole time and I was like oh, gosh, it was shocking to me at the time but of course, I’d probably, well I’d sat with my sister dying of brain cancer so I had a different experience to them and of course it was deeply uncomfortable for them, but it was shocking because we hadn’t discussed what they were coming for. You know, I thought they were coming to see him and made an assumption that I would get a break from it and so when we’re talking about caregivers of caregivers, I don’t assume that people are comfortable and know what to do because often times they don’t.
MF – One of the things that you make me think of is families can be a challenge and I think one of the things that happens when we’re in the caregiving situation as well is, part of the fatigue is the rehearsing. We’re rehearsing what to anticipate when so and so comes. Rehearsing what to anticipate when that treatment is happening because the week after chemo, it’s like, a little bit like you say, it’s not the same person. So there’s a, in rehearsing there’s a powerful… we all rehearse, all the time, it’s a powerful piece but it can also be fatiguing because there’s a planning that needs to come from that, that if you don’t do it then you, you know what you’ve just described is some of that, I’d rehearse one way and then it shows up completely differently and now it’s even more fatiguing.
DT – Yes, and all that rehearsal and each piece that you’re rehearsing is another unknown and you’re trying to navigate it. One of the things that just struck me is we’ve both be, are in relationships and I feel I’m still in a relationship with Paul in some ways, that are very, very strong, they’ve got a very strong third entity, and I’m also aware that for some people they might be in the middle of a breakup or in a very difficult relationship and then one partner gets a life threatening illness, and then navigating that, it’s not something I have an experience of but that’s a whole other relationship with someone. Some people will look after an ex-husband who developed a life threatening illness and some people are like I need to be out of here, I can’t do this. So that caregiving role could be the thing that tips them over the edge.
MF – That’s so interesting. Because I do think that’s a piece that happens more often than we think because very often the dynamic is not present to the outside world and somebody will be in that situation and it just makes me think of how, this is when I want to scream at the universe because I hate insight like this, where even in all of this I, we, still have privilege because we could stay in our stay with somebody who is our beloved and will remain the beloved, during and after. It’s a different caregiver journey that has a different privilege that I’m grateful for.
DT – Yeah, me too.
MF – I’m aware, Daphne, Katie knows this and you know some of this as well, Grito is a little bit, you may not here him because he’s further away but he’s snoring and I know both you and I speak dog. I’m curious about, because I also know how present your dog was for you, and I’m curious about the impact and how you experienced.
DT – It’s so funny you should ask that Marita because my dog and I had an interview at the hospice where Paul died a couple of weeks ago, to become their therapy dog and he…
MF – Oh wow!
KC – That’s brilliant.
DT – Yeah, so he was just a one year old golden retriever when Paul went into the hospice and was allowed in the room and would just curl up, I would put a mat down and he just knew he had to lie down and be quiet so it was just really amazing for me, I mean it was comfort for me but also occasionally he would have his paws on the bed and Paul would stroke him, and he would just stay still for half an hour without moving and I was absolutely amazed but it was sort of a wonderful support for me, so he was in that hospice for 35 days, every day for up to 12 hours I would just have to take him out for a quick break every now and again. So when we went back for our interview, last week, he trotted in like ooh I know which room I’m going too! Which room where we were going.
MF – Oh that must have been so touching as well, oh, that must have been a whole other memory experience.
DT – It was and he sort of conducted the interview himself pretty much and he got us the job so there we go. But, you know, the other thing I should say Marita, there were times where we had to go for emergency treatment at a hospital and didn’t know how long Paul would be in. I would just have to drop the dog with anybody and I’d have a couple of friends and I’d ring them up and say I’m driving to so and so, can I drop the dog off? And you know, that was so important to me. Very important for that support of me as the caregiver.
MF – That’s great. I have the same with our next door neighbor as well. And just talking about hospitals makes me also think of something else. The caregiver role is also different during and post Covid. Because I couldn’t go into any of Faith’s chemo sessions with her.
KC – Wow.
MF – I couldn’t go into any of her oncology conversations with her… I can’t. That has been one of the most difficult parts for me, is that I couldn’t be there. I couldn’t be part of hearing the news. I couldn’t be part of navigating what’s going on. That suddenly has me emotional.
DF – Oh, Marita.
MF – That’s huge during these times.
DF – That is so hard, so hard because those are the moments where you’re having a conversation about something when actually the person may or may not be taking it all in, so in some ways I saw it as a crucial caregivers role but I was sitting taking notes and listening and you weren’t able to do that, that’s so hard.
MF – No. And I know so many people who, you know, everybody, it’s a little bit easier now but now we’re also in a situation where because of immune compromised you have to continue to be extra careful post, even now with mass band aids banned and all of these, all of these have an impact on the role of caregiver. And that’s one of those places where I’ll never forget one evening, we were going to celebrate I think, Faith insisted we celebrate my birthday and we sat, ok there was a place we thought we could go to but because of what is happening with her, I, it was the worst birthday celebration ever because when you’re sitting at the table you take your mask off to eat and I was like let’s just get out of here because it’s, that where the Mama Lioness comes in again and goes no, get the F out of here. So there’s a whole other piece in the presence of a Covid streak that’s going to be with us for a while.
DT – Oh that adds such a level of difficulty, Marita, my heart goes out to you, to both of you because Faith would want you there by her side. And then just the awareness of the environment, wherever you are, you might be trying to do a few bucket list things and then you’ve got to be aware of the environment.
MF – That’s right. That’s a rehearsal again. Yes, indeed.
DT – I can hear Gito snoring. Tell me how he’s been your third entity through this.
MF – Well, the same. He’s my tactile, you know, I want to say hand on my back but because when I have my hand on his back it’s like he has his paw on my back, so he’s that. It’s also fascinating to watch how you know, we’ve got a special sheet over our bed because Grito will want to be on the bed, and how he will jump up and he will insist on making it virtually impossible for Faith to find a straightened out position because he goes and he insists he’s going to go and curl up with her, then I go what am I, chopped liver? And he just looks at me. So it’s that whole piece as well and the same with couches. It’s like he would insist to go where Faith is and she denies it, she says he just thinks I’m going to take him for a walk but it’s like nope, there’s a whole different way in which he knows and he goes and curls up.
DT – Yes, and it is very comforting, you know, because the animals do, they’re so sensitive and they do know that something’s different.
KC – They’re so intuitive, aren’t they? They read the emotional field and lean into it in a way that often humans can’t. Amazing.
MF – There’s a lot here.
DT – There is a lot! Who knew there was so much. Yeah.
KC – And I guess there’s no one answer when we talk about what it means to be, what right relationship means as a caregiver but I wonder if you both have advise for someone who’s navigating this in whatever stage they’re in. What adice you’d maybe offer out from where you sit.
DT – Well, I think you used the word navigate Katie and I think it is a sort of over and over, navigating new things, new experiences, and probably I think the thing that would be most helpful is the tiredness and the fatigue makes the navigating harder. So any way that you can find to, you know, just have some hands on your back, some of those people, you know, this does have to be your sort of sanctuary of the few people that will just show up and deliver something without fuss, without words, without need for a response. And actually it reminds me, I had one friend who would send me messages but she’d finish them with NNTR which meant no need to reply. That was just perfect. So that would perhaps be my advice if you want to offer help to a caregiver, send whatever you want but no need to reply.
MF – I think for me the thing that shows up is, like it or not, one of us, if you’re in a relationship, is gonna be the caregiver. Unless we’re lucky enough to go together in some unexpected way. I think that the conversation with one another about what is it that when I am the one that is on my way out, what is it that I want and how do I want to go? And what would be helpful from you who might be my care, there’s a conversation, you’re not going to get it right because none of us know what will show up and how we’ll show up in that situation. But I think the thing that you’ve alluded to too Daphne is that in our society we just talk about this enough. It’s real, it will happen and if we can be in earlier conversations about wow, what if we only have a year left. Don’t just go to the bucket list. Go to what needs to be in place if we only have a year left, then we can do some bucket list things as well. So it’s that kind of conversation that I think we’re just not comfortable enough with and that’s where I think we have this God-complex where we think it’s not going to happen.
DT – Yeah. That is such an important conversation, Marita, if we could all do that with our partners.
MF – And with family. And again, like I said, I don’t think we’re going to get it right but I just watched now, with Faith, because of this serious car accident that she had 6 years ago or whatever, and the brain trauma that came with that and that was a rehearsal for me with family, her family. And I had a better access point in terms of what to anticipate and expect from whom and how to dance with that. So I think, and it’s been hugely helpful. So I do think there’s been something about it’s one of those conversations that nobody likes to be in but make it part of your intentions to go there.
DT – Yeah. That’s a fantastic tip. That’s so important.
KC – I think that’s so right.
MF – I think we listen to any of the podcasts, Katie, that you have done. Just also, if anybody listens to us here from a care giver rehearsal or from sitting actually in the caregiver role, it would be useful to listen to those podcasts from the ear and the hat of caregiver, when you listen to other cancer people. I hate to say patients. But people who have cancer and people who are, like all of us, will have to navigate a journey at the moment. Listen to them from that caregivers perspective because it’s different for everybody.
KC – You’re so right, we are all in some way, shape or form in denial and this isn’t just a conversation to have if, when cancer shows up but just in life, and it’s not just right relationship with our partners, it’s right relationship with ourself and this big topic of death.
MF – Yeah, it’s so interesting Katie, you’re beginning to say, I think, it’s so interesting how this one, unlike so many podcasts, it feels like it’s ongoing, there isn’t quite an end to the conversation because it’s an incompletable conversation. So, thank you for sitting in the dialogue and noodling with this, Daphne, from our very different experiences that I just want to honor you and the third entity of you and Paul that remains in essence. So present.
DT – Yes, thank you, thank you, thank you Katie. And having, knowing you and Faith as well as I do, Marita, it feels so precious to actually learn from the way you’re navigating this.
MF – Yeah, and I have to say, you are one of the people that I had wanted to bring this out of me, that I didn’t want to do it because I would just be in tears. But you were somebody I could do that with, I know.
DT – Yeah. Exactly.
KC – Thank you both for letting me sit in on this conversation, it’s been a privilege. And I want to thank you both but I also want to thank Faith and Paul, they were a big part of this conversation too.
MF – Yes, thank you, thank you. Thank you Katie, as always.
DT – Yes, very precious conversation and I feel really, really good for having had it, actually. It kind of felt like it’s been an unspoken thing that’s not quite this sort of audience that I can go chat about it to people, so it feels really lovely to be able to express some of these experiences, thank you.
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FF - Thanks so much for listening to this episode of Conversations on Cancer. We hope you’re finding these talks as meaningful as we do and, because every individual is unique, we know that every cancer journey is different. These podcasts may or may not reflect your own experience. We encourage you to honor whatever your own journey is with illness in your life.