How to Help Someone with Cancer

Transcript of Episode 4: How to Help Someone with Cancer
The Thing About Cancer podcast, Cancer Council NSW

[Series intro]
[woman] The very essence of all cancers is a change in the way that cells divide.
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[man] I remember sitting in there thinking, you know, it’s not happening, it’s not real, it can’t be real.
[woman 2] It’s something that we don’t talk about.
[woman 3] This feeling of being overwhelmed − it will get better once you have a plan and you know what to expect and what’s going to happen. It’s not going to be like this all the time.
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW. Information and insights for people affected by cancer.

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Julie McCrossin: Hello I’m Julie McCrossin and today the thing about cancer is that it can be hard to know how to help. When someone is diagnosed with cancer, you might really want to be supportive but it’s tough to find the right words, or you could be worried about intruding, or they might not seem to want your help.

Kim Hobbs: If it’s your friend, or your family member, or your work colleague who has cancer, you want to let them know that you’re concerned and that you’re there for them, and let them lead the conversation then about what this cancer diagnosis means to them.

Julie: We’re talking to Kim Hobbs, a social worker from the Westmead Centre for Gynaecological Cancer who’s worked with many people with cancer as well as their family and friends. Later in the episode she’s going to run through some ways you can offer meaningful support after someone finds out they have cancer.

Just to be clear this podcast contains general information only, so we recommend that you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions. Before we get back to Kim, here’s Suzanne talking about the support she appreciated after her breast cancer diagnosis.

Suzanne: A lot of people say, “Let me know if I can do anything for you,” and you’re just not in the headspace to plan what you need done and then advise people what you need done, so what I found, the friends that just come in and basically do things without even asking. My sister-in-law would come and clean some days she − one day she just arrived with all of the cleaning gear and she just said, “Right where do I start?” and she just cleaned the house, tidied up because the kids were little so there were toys everywhere, and she would just tidy up things, and she used to come once a week and do that and that was what she felt good about doing. And then other friends would just, yeah, come by with cooked things and leave it at the door and text me and say, “I’ve just left something at your door, in case you’re sleeping, didn’t want to wake you”. And so it was much more useful and more meaningful I found to have people just do things off their own bat and I found that was really touching.

Julie: As you heard at the start Kim Hobbs from Westmead Hospital says that when you’re talking to someone with cancer it’s a good idea to follow their lead, but you have to say something. What’s the right thing to say?

Kim: So I think the right thing to say varies according to who you’re talking to, so you need to be mindful of where that person is in the diagnosis process and who they are and how old they are and what their circumstances are. But what you want to do is to convey empathy and concern but not panic and overwhelming fear of what’s ahead of them.

Julie: Just before we go on I guess I’d just like to come back a bit more on that issue of not showing fear. Is it important before you talk to someone with a diagnosis that you sort your own feelings out a little bit and calm down so that you don’t impose your own anxieties on the individual?

Kim: I think that’s ideal. If you know that you’re about to be dropped that bombshell. But if somebody were to ring you at home at night and say, “I’ve just got to tell you that I’ve been diagnosed with cancer,” then your first response will be shock. And it’s a matter of controlling your own emotions then so that what you communicate is: “I’m sorry that that’s happened to you, let me hear from you what it means for you,” and not to make assumptions about what it might mean.

Julie: And is it okay to be lost for words?

Kim: It is and sometimes I say to families in my professional role, “There are no words. Talk to me about what this means for you,” and they might not have the words either.

Julie: Yeah, so ask the person questions and listen.

Kim: Yeah, the platitudes and the clichés don’t cut it.

Julie: What do you mean by that, can you give me an example?

Kim: So, “This must be awful for you how do you feel?” Well of course it’s awful and I feel rotten. They’re givens, they’re assumptions, so let’s not start there. What I want to be able to say to someone is, “Tell me what this means for you?”

Julie: Give me some other examples of helpful things to say.

Kim: “What is it that you want me to know about this experience?” “What have you been told so far?” “What help do you need to deal with what’s ahead of you?”

Julie: I’d like to come back to this question of unhelpful things to say. Tell us other examples you could give of just be very wary of saying this sort of thing.

Kim: “Oh I know how you feel” − because again, unless you’ve had exactly the same treatment for exactly the same cancer, you don’t know how they feel, and even if you have, your circumstances are different to them. They don’t want to hear the war stories of people that you know who’ve been through this treatment. They don’t want to hear that you have them dead and buried already. They don’t want to hear either, “Don’t worry, you’ll be okay, I know you will.” It’s that middle ground that we need to tread and avoid either the platitudes or the horror stories that people aren’t going to find helpful. What people tell me isn’t helpful is the person that says, “Gosh, you look well,” when you know you look anything but well. “Don’t worry about losing your hair, we know you’re the same person” − because when that person looks in the mirror, they are not the same person, and so acknowledging that is quite important and to say, “Tell me about how it is”. Not all the, you know, jokes about gosh you’ll save on hairdressers and shampoo − people don’t want to hear that, they want to be able to say it really does matter that my hair has fallen out and I don’t care that in six months’ time it’ll be back. Right now it’s horrible.”

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Julie: When Suzanne was diagnosed with breast cancer, she got a range of reactions from the people around her.

Suzanne: Yes some people didn’t know how to talk about it, so they would skirt around it and ignore it and that was just as difficult to deal with as the ones that just wanted to tell you about their Aunty Flo who died of it. And you think to yourself, “Really? Did I really need to know that?” But some people are just very awkward, they don’t know how to manage through when someone has cancer and manage through the conversation. So what I found the most helpful was frank people, the people who were just happy to say, “How are you feeling? Where are you up to with your treatment?” and then move on to other things. I didn’t like to dwell on it, but it needs to be acknowledged, otherwise it’s the elephant in the room. So that was what I found most helpful, happy to talk about it but let’s not spend the whole time talking about it.

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Julie: So Kim you started by saying it’s important to show empathy. Are we talking things like cards, flowers, images on Facebook that are in encouraging if you’re into Facebook. Are they important?

Kim: Yes and thinking about this interview I was thinking about how the art of letter writing has been largely lost and so in the overwhelming chaos that happens to someone who’s been diagnosed with cancer, when they can’t take on board absolutely every well-meaning message, a card in the mail, or a letter, or a note left at the doorstep, or a digital communication − email, texts, tweets, whatever it is you do − is a meaningful thing to do. With a message that says, “I’m thinking of you. Please get in touch when you’re able and if you want to.”

Julie: I’ve also heard that it’s important not to try and fix things for the person. What’s that about?

Kim: Yeah, so I can’t make it better, nothing I can do or say will make the cancer any better. What I can do or say is, “Let’s focus on how we’re going to get through this, whatever it is, in the best shape we can.”

Julie: I’ve had a cancer diagnosis and one of the things that happened to me was people would tell me an enormous array of things that could fix me on the health front.

Kim: Yes.

Julie: What are your thoughts on that approach?

Kim: It’s a really common thing to do for family members and friends and I think it comes from a place of helplessness, but I think the efforts to fix and to make better and to tell you about the wackiest new things you’ve seen on the internet come from a place of good intentions but aren’t always well received.

Julie: Why not?

Kim: Well, partly because they’re overwhelming, partly because they create confusion and mistrust. Sometimes we have people who come to their oncology appointment and say, “My family member’s given me this printout from, you know, a really reputable journal and why didn’t you tell me about this treatment?” So it can undermine the trust of the oncology treating team in a way that may not be helpful.

Julie: Should you share stories about other people with cancer with the individual who’s got a diagnosis?

Kim: I would seek their, permission’s not quite the right word, but I would ask them if they wanted to know about that. So I don’t think it’s very helpful to talk about the horrendous chemotherapy experience of your next door neighbour’s mother’s best friend, particularly if that was 20 years ago and for a different sort of cancer. So what I often say to people is: people will tell you lot of things about the experiences of them or of someone they know with chemotherapy and radiotherapy and surgery. Unless they had exactly what you’re having, and even if they did you’re a different person, try not to take too much of that on board.

Julie: One of the things I’m hearing from you is ask the person whether they want to know things before you start blurting at them and that’s probably a good guiding principle because it does give some control back to the person with the diagnosis in a time in their life when there’s so little control.

Kim: And cancer is a unique experience for everyone and so what you felt if you’ve cancer yourself is not necessarily what your friend or your work colleague is feeling. So perhaps the better approach is, “As you know, I’ve had this experience myself, let me know if you’d like to talk about it.”

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Julie: You’re listening to The Thing About Cancer a podcast from Cancer Council NSW. I’m Julie McCrossin and I’m talking to Kim Hobbs, social worker from Westmead Hospital, about how you can help someone with cancer. In a moment we’ll hear more from Kim about the cancer diagnosis roller-coaster. If family and friends want to get a general understanding of current cancer treatments or find out more about Cancer Council services, they can call 13 11 20 or read the information online. We’ve got links on our podcast page at cancercouncil.com.au/podcasts − just click through to the episode there. You can also go to that page to listen to more podcasts.

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Julie: You’ve emphasised, Kim, that the response of an individual with a diagnosis is very personal and that it’s important to ask questions and listen without interruption, and I take that on board. But is it possible to give us a summary of common reactions of people who get a cancer diagnosis, I guess particularly on the emotional and psychological side. Are there some features that do occur again and again?

Kim: So the roller-coaster analogy is good and we hear it all the time. So people who feel initially devastated by what they’ve heard, and then hopeful when there’s a treatment plan, and then terrible while they’re going through the treatment because it’s just awful. So what might help from someone who’s wanting to provide assistance at that time is that thing of, “Tell me how it is for you now, today,” knowing that it might not be like that tomorrow. And if the response is a negative one and you get loaded down with a whole lot of negative vitriol about how awful this is, then being able to take that and see that it’s not a personal attack on you is really very important. And so if someone has chosen you as the safe person on which to unload their anger and their distress, that’s important.

Julie: What if you’re in a situation where you’re reaching out to a friend with a cancer diagnosis, you’re offering them help, but they don’t seem to respond or they don’t respond to your invitation to ring back or see them. Should you take that as a message to “leave me alone” if someone’s just not responsive to your offers of help?

Kim: I think there are probably two factors in that. One is that generally speaking people aren’t very good at asking for help and I think that applies particularly to women. So we are usually the helpers within our families and it’s an uncomfortable experience to be the one who’s asking for help, so that’s one aspect of it. The other is that people are just overwhelmed with offers of help and so what I think is a more helpful approach is to communicate in writing or digitally, “I am here to help. Please get in touch when you’d like to.” If they don’t respond, then there’s a lot going on right now − there might be operations and chemotherapy and radiotherapy and a lot of family readjustment to be dealing with, and so I would, in a non-intrusive way, even saying those words: “I don’t want to intrude but I am thinking of you and please get in touch to let me know what I can do”.

Julie: You know this conversation is all about helping people and what we can do to help people, but some people withdraw. Is there a problem with that kind of isolation? How do you respond when the person with the diagnosis just wants to be alone?

Kim: I think there’s a real sense of isolation that comes with the diagnosis even when you’re surrounded by support and your hospital room’s full of flowers and you’re exhausted by the number of visitors − people talk to me about that sense of being alone in a crowd. So you’re there and you’re in the experience but it’s like nobody understands what it’s like for you, and so what you need is some space, and that’s okay if you can communicate that to the people who care about you. So − “Please don’t call on Sunday, I’d like to have the day to myself” − is okay.

Julie: I’ve also heard it said that it’s good to offer specific help.

Kim: Absolutely.

Julie: Could you run through some of the common helpful things that people really do appreciate?

Kim: So: “I don’t work on Wednesdays I’d be happy to take you for an appointment if you’ve got an appointment that day.” “Do your children need to be taken to soccer training, or ballet classes or swimming lessons, my kids go on Tuesdays can I take yours?” “Would you like them to come for a play-date next Saturday afternoon? That would fit in with our family arrangements.” “Can I do the shopping? I’d like to come over and have a coffee with you today. Is there anything you need at the shops on the way?” Whereas the “Can I do something for you, what do you need?” is likely to be “No thanks, we’re okay”. But “I’m going to come over with coffee. Can I get something at the shops?” − “Yes you can get the milk, and the bread and a few bananas” − is a more helpful response.

Julie: Also perhaps going to appointments and offering to take notes for the person. One of the things that was helpful for me and I’ve seen it work for others is to offer, if you’re a good friend, a close friend or family member, to coordinate the offers of help and to coordinate group communication, either by group email or a closed Facebook page. What are your thoughts on that?

Kim: I see that happening much more often with − I work in gynaecological cancer so clearly all the people I see are women, and the younger women where they’re very comfortable with that technology and so where the sort of head cheerleader will take on the responsibility of saying, you know, this person’s going to make your meal on Tuesday, this person’s going to take the kids to soccer, and this person will come for your appointment on Monday − and that’s communicated in the digital format, they don’t have to talk on the phone, they just know who’s going to turn up on what day to do what and I think that’s really helpful. Again if you have the permission of the person to do that so that they don’t feel that you’re taking away any little bit of control that they still have.

Julie: Yeah, there’s also some apps and some websites that can help with coordinating when lots of friends want to do something. We’ve put links to a couple of those on our podcast page at cancercouncil.com.au/podcasts and then you just click through to this episode. But Kim there can be such an encouragement to be positive. While that can be useful psychologically, there is a certain coming to terms with the gravity of the diagnosis that’s essential.

Kim: One of the things that I say to carers and families, who I often refer to as the cheer-squad, is that relentless positivity is simply not possible, that it is okay to say that it stinks. What isn’t okay is to wallow in that and not get out of it, but it’s okay to let it out. We’re not very good as a society at expressing negative emotion and, as I said, it is your family’s job to make you better. So sometimes what the health professional can do is to be that safe place to express the less than positive things that are happening.

Julie: But as a good friend or a good family member being able to sit with the expression of fear and anxiety in silence and not leap to reassurance could be a gift too, that could be helpful as part of the conversation.

Kim: Yep, just being there, just sitting, is a very active way of helping. So the person who can sit for hours in the chair next to the chemotherapy seat and knit, or read a book, or, you know, not have to have conversation but just a physical presence of being there is very active.

Julie: The person who, if the person with the diagnosis has a husband or a wife or a primary relationship or a primary carer, your thoughts on supporting that carer as a means of helping the person with the diagnosis?

Kim: Terribly important. So there’s a lot of burden, physical and emotional burden on the caregiver that doesn’t get acknowledged by health professionals in particular and I think sometimes by family and friends as well.

Julie: So really if you’re wanting to help, actively offering to help the carer is crucial.

Kim: And they even more than the patient will feel that they shouldn’t ask for help. Because after all I’m not the one who has to go through this horrible treatment, so they feel as if they should be silent and not express their own needs and anxieties about their situation.

Julie: Just on another area of help. You mentioned I think financial challenges and I’m just thinking if someone has means and is a close friend, the offering of interest-free loans may be useful in some circumstances. It’s a side of cancer that isn’t discussed very much but it can be an economic challenge. You even see people on the GoFundMe sites on the internet, raising money for their friends to cover expenses. What are your thoughts on that?

Kim: Yeah, I think that if people are reluctant to ask for someone to drop the kids at school or to do the shopping, they’re even more reluctant to disclose financial stress. Social workers like me talk to people about that and talk about official channels through which we can get assistance, including the Cancer Council, accessing superannuation funds, Centrelink and so on. I think that most people would feel very reluctant to take financial help from someone except immediate family. So the parent who says, “Well look, you’re going to inherit my money anyway, so here’s a bit of a boost to your account now,” is probably well received, but a good friend who says, “Look, we’re fairly comfortable and we feel terrible about what’s happening for you, so we want to do something to help and here’s some money,” probably isn’t going to be well received. But I’ve seen a few families where a well-to-do friend has said, “I’d like to send you on a holiday, so here’s airfares and accommodation” − that sort of thing will probably be well received. But I think in terms of actual cash, we’re better off helping people to look at official channels.

Julie: Another aspect of this can be that there’s an enormous amount of help offering during the immediate period of diagnosis and treatment, but for many cancers treatment may spread across years, intermittently. Or indeed the physical and psychological impact can extend across time. So how does one manage that as someone who wants to help?

Kim: Yeah, so that’s exactly what people tell us − that their freezer is full of casseroles, they can’t fit anymore in, there’s flowers that are a real nuisance now because they’re dying and you have to do something about them, but then the treatment ends and as we understand more about the survivorship concept…

Julie: Tell us about that, that’s a word you hear a lot now in the cancer world.

Kim: So it’s a big buzz-word at the moment and it’s a real thing. So people finish their treatment and there isn’t this sense of wow I’ve beaten the cancer and I’m such a wonderfully strong and improved person and I’m going to get out there and take on the world. There can be that experience and hopefully there will be, but there isn’t always. And so the person with cancer who’s been treated for cancer and those close to them have this sense of “What now? What’s ahead? Finally I’ve got time to process all of this,” and in fact that can be a time when depression really sets in. And that’s also the time when the offers of support drop off. So the mums at the school gates see that you’re now, your hair’s grown back and things are good and they’re wanting you to be good and they’re wanting to cheer you on and tell you what a terrific person you are for having gotten through all that and then not wanting to acknowledge that there’s still worry and anxiety and fatigue. Post-cancer fatigue is really very real, so you might need just as much help with the ironing and running the kids around and cooking meals as you did when you were having treatment.

Julie: So if you’re someone who wants to help someone who’s had a diagnosis, you might make a note your diary every six to twelve months to just say, “How are you going? Is there anything I could do at this point? Or is there anything you’d like to talk about now?” Not to assume recovery is a tidy, neat package.

Kim: And even to say that “I understand that the effects of treatment go on for a very long time, how are you feeling? What’s it like?”

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Suzanne: One thing that I always look back on is the practical help that friends and family can offer. Like, for example, my cousin, she lives quite a distance away and she couldn’t be around − she had very young children at the time, much younger than mine, and she couldn’t be there to physically help, so she used to send like six to eight movies at a time and I loved it. So once every couple of weeks I’d get this pack of movies and I’d just pop in the DVDs and have like a little movie marathon on the days that I felt up for it, and I found that was so great and so useful. And she always said to me, “I feel so bad I was never around for you,” and I said, “What you did was so fantastic.” So you don’t have to be with that person to be helping them out, so it’s just those, those little things that people thought of that really meant a lot.

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Julie: That’s it for this episode of The Thing About Cancer. Thanks to Kim and Suzanne for sharing their insights.

If you’re looking for more information, you can ring the Cancer Council 13 11 20 Information and Support Service from anywhere in Australia or go to cancercouncil.com.au/podcasts. If you have any feedback on this podcast we’d love to hear from you, so leave us a review on iTunes or on our website. If you’d like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app.

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Julie: If you found this episode helpful you might be interested to know we’re doing a podcast about how a cancer diagnosis affects the carer. In that episode, I talk to psychologist Ben Britton about how carers need to practise self-care to help them get through what can be the long haul of cancer.

Ben Britton: You can’t always put someone else’s needs above yours, because eventually you won’t be able to care for them if you’re not able to care for yourself. These things that are sort of the bare minimum just to keep you ticking over have to become one of the jobs of being a carer. So a little bit of self-care is part of being a carer. Even if you don’t want to leave your loved one to go on a walk or something, if that’s what works for you sometimes have to do it for them, in the sense that this is part of the job of being a carer.

Julie: Look for the Cancer Affects the Carer Too episode on our website at cancercouncil.com.au/podcasts.

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Julie: The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only, and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals.

I’m Julie McCrossin and this has been The Thing About Cancer, a podcast from Cancer Council NSW produced by Jenni Bruce and Miles Martignoni.

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