Coping with a Cancer Diagnosis

Transcript of Episode 1: Coping with a Cancer Diagnosis
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.
[music]
[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.

[music]

Julie McCrossin: Hello, I’m Julie McCrossin and today the thing about cancer is that it can just be such a shock. You might have suspected something was wrong or you might have been feeling perfectly healthy and not had any symptoms. Either way, few people are really ready to hear the words − it’s cancer.

Cath Adams: If we translate cancer into an emotional meaning − cancer is uncertainty. As soon as someone puts cancer into your world picture, they add a level of uncertainty that wasn’t there before. It changes the way you see yourself, it changes the way you live your life, it changes your routine, but no-one will give you a definite answer. So if you say:
“So, will I be alive in five years?”
─“Maybe?”
“Will I feel sick from the treatment?”
─ “Maybe?”
“Will my hair fall out?”
─ “Maybe?”
There’s no certainty, and as human beings, we deeply need certainty. We need routine, we need structure − we have a foot that we put our first sock on first. Cancer takes all of that away.

Julie: We’re talking to Cath Adams, a clinical psychologist from the Hunter New England Area Health Service, Genesis Cancer Care and the University of Newcastle. Cath has helped many people navigate what can be a pretty overwhelming experience.

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 Cancer Council 13 11 20 if you have any questions.

Before we get back to Cath, we’re going to hear what it can feel like to face that initial shock of a cancer diagnosis.

Woman: There was a whole team of doctors and that’s when I found out I had cancer. It was just … surreal. Uh, you have no words to describe it, it just hits you in your face.

Man: I don’t remember what I was feeling that week to be honest because I remember it was a whirlwind.

Woman: It was a real shock and I felt like that I was suspended from the ceiling looking down at this woman getting this diagnosis thinking, “Oh, that poor woman”. [laughs] It was … you really detach yourself from it.

Man: It’s sort of, uh, probably the biggest thing in your life. It affects everything and it’s hugely emotional.

Julie: Look, in 2013 I was given a cancer diagnosis too and I can really identify with that feeling of being overwhelmingly shocked and almost losing my cognitive capacity by about 50% just on hearing those words. Of course, everyone reacts in their own way, but Cath, I’m interested in your initial advice for someone listening to this who’s just had a diagnosis. They’re now feeling it’s an overwhelming, emotional and challenging anxiety-inducing moment − what’s your first advice to people at the very beginning?

Cath: My very first message to people is: just. be. scared. That’s normal. Expect an emotional roller-coaster − that’s normal. You’re not hurting yourself by despairing, by having tears, by being frightened. You’re not hurting yourself by going into denial. We all will respond differently, we just have to allow ourselves to have our response. That’s the important thing.

Julie: Okay, so let yourself feel and give yourself some time?

Cath: Be as gentle with yourself as you would be with someone you care for. If it was your best friend telling you, if it was your child − be compassionate with yourself to that same degree. We are never that gentle with ourselves.

Julie: And is the best strategy to look back at your life and think when I’ve been faced with big challenges or big crises before, what have I done that’s helped? Because it’s likely to help with cancer?’

Cath: Absolutely, you know, if there’s one thing every patient should do, it’s thinking about: “Okay, when I’ve been confronted with tragedy, what have I done? How do I cope in a crisis?” You know, “Do I make a plan?” You know, “Do I enlist the aid of others? What are the strategies I put in place?” Once we identify them, we can move forward. So yes, it’s really crucial. Think about “Who am I? How do I deal with crisis? And I’m just going to apply that.”

Julie: Positive thinking. Does thinking positively once you’ve had a diagnosis of cancer help?

Cath: Look, thinking positively helps. We know that it helps lift our mood, we know that it helps us to engage with our treatment, but some of us are glass half full people, and some of us are glass half empty. And if you were born a glass half empty person, that’s how you will cope. And so, for people that are able to tap into the positive thinking, it’s a very useful strategy, but if that’s not how you cope, it can be really damaging to have all the people around you say, “You’ve just got to smile − just stay positive.”

Julie: I suppose the critical question, if you’re a patient, is: “Will it help me beat cancer if I try to be positive?” Is there a link between one’s own attitude and the actual, your chance of survival and recovery?

Cath: We don’t have absolute, you know, concrete evidence for that, however, we do know that people who are able to engage in positive behaviours tend to have a more active coping style, they tend to have a better functioning immune system − and our immune system is our best personal defence against cells going wrong, which is what cancer is. You know, so we know that it increases our likelihood of engaging in activity and exercise. Now there’s strong evidence coming out that exercise is a really beneficial thing to pursue throughout your cancer treatment, let alone after. We know that positive mood will tap us into not getting caught in the negative cycle of thinking, of keeping us out of despair. So we’ve got supplementary evidence that suggests that it’s beneficial, but we also know that trying to completely change the way you deal with a crisis is not helpful − that actually puts more stress on the system than anything else. So it’s about being able to think about how I can tap into positive thinking, but not feeling that I have to be that way all the time. I can have a bad day, I can stay in bed, I can cocoon. All of those things are allowed, but I try and pick myself out of that when I can.

Julie: Well, let’s go to the next issue, which is − is it wise, the next day, when I’ve maybe cried or, if I’m lucky enough to have a partner, held on tight, the next day, is it wise to try and find out everything you can about your particular disease and the treatment? Should I go the ton and try and find out everything?

Cath: If you’re an information seeker − if that’s the way you normally cope with things. One of the things we tend to think is that cancer means we should learn new ways of coping − we have to be positive and we have to get all the information, we have to understand things. But if that’s not how you cope with things, then no, don’t try. But if you’re an information seeker, if you’ve got good skills in finding things out, then absolutely! Trying to find information from reliable sources is really important.

Julie: So again, there’s no right or wrong −

Cath: There’s no right or wrong.

Julie: It’s an individual thing. And so if you do feel, I want to understand at least the key elements, what are the steps that you would advise initially to get information so that you can be as safe as possible emotionally and in terms of accuracy?

Cath: Look, I think if you have the presence of mind to be able to ask your doctor that question in the consultation, that’s the best place to begin. Most of us don’t because we’re reeling. So places like going to the Cancer Council websites or Cancer Australia and actually putting in the type of cancer that you’ve been diagnosed with and looking at what introductory information they have − all of the links on those sites are to reliable sources. Because one of the things that happens is that it kicks an enormous need to survive, it flicks a big switch, and so we’re very vulnerable to tapping into anything we see that can cure cancer, and so we can actually put ourselves on a track that’s very separate to the one that our doctors are looking for us to take because we’re desperate to do something now − “I don’t want to wait two weeks to start my chemotherapy or for my surgery. I want to do this now.” So that reliable information seeking is probably a key point.

Julie: I just want to emphasise that most of us see the yellow Cancer Council booklets in our cancer treatment centres and there are reliable websites written up the back of those booklets. And I think some of the best advice I was given, and that I’d give to others, is to stick to only a few reliable websites. If you’re looking for cancer information, you can go to our podcast page at cancercouncil.com.au/podcasts, click through to this episode and you’ll find links to Cancer Council’s online information as well as other evidence-based websites. And you can also call Cancer Council 13 11 20 if you have any questions or to get free copies of their booklets.

The issue of how to tell other people − it can be a real struggle, sort of a pressure to face telling other people. Is it better to hide your diagnosis? Or is that ever an option?

Cath: Look, again it’s an individual option. If you are an incredibly private person, then the thought of the world knowing about your diagnosis can be very confronting, and so it is something that you need to deal with slowly. Hiding your diagnosis from everyone can be very difficult, and it becomes obvious that that’s what’s happening and that can lead to whole gamut of other problems. So, you know, generally it’s important to let those closest to you know what’s happening. We live in an age of information, you know, and the internet is out friend and our enemy, and so it’s very possible to have a reaction where I post that this is what’s happened and all of a sudden, thousands of people know what’s happening to me. That can also be very confronting. So it’s important to think about how we share that information.

Julie: Myself, I’ve just seen so many people now with cancer who get an information coordinator, and it’s either a group email or a closed Facebook page with regular updates, and that can allow for accuracy but also take the pressure off the person and their family to update others. So, is that just basic advice these days?

Cath: Standard advice. Identify five people who then share information on. Sending it through email or a webpage, anything like that, allows it to be contained, but even having a telephone message on the home phone number that says, “Thanks for calling, this is where we’re up to, we’re having a few days off cancer. Leave a message, we might get back.” But just containing it in that way, but providing the same information to everybody.

Julie: And Cath, how soon should you tell your wider circle that you have cancer? Should you gather support really early on?

Cath: Generally it’s good to wait until you’ve got a firm diagnosis, because when you tell someone, their first question will be, “When do you start treatment? What are they going to do for this?” You know, we all have a little bit of knowledge about cancer, and as soon as someone we know has cancer, we apply that knowledge. And as the patient that can be overwhelming because you have to keep saying, “I don’t know, I don’t know, I don’t know when they’re starting.” That’s really hard. So holding back from the general, you know, spreading of the information is a good idea until you know when treatment’s starting.

Julie: The range of reactions other people have when you tell them that new news you’ve got, “I’ve got cancer”, can you just run through some common reactions?

Cath: Look, there’s so many, but the most common ones are the people that immediately, “Oh yes, my brother had that cancer. This is what you need to do and you need to look at this.” You know − “You should do all of these things that I know.” Another really common one that can be very painful is: “Oh, oh, that … I …” And then people disappear and you don’t hear from them. So one of the things that happens is, you lose friends, and you make new friends from people you don’t expect.

Julie: And you might become less close or more close to members of your family.

Cath: It’s a shift. The person that you are changes from the diagnosis and through the treatment but also your relationships change. Another common response is that very much “Right! What can we do?” And that can be overwhelming because you don’t know what you can do yourself, let alone what anyone else can do to help. So people tend to either smother you or disappear. It’s very rare that someone is able to just put their arm on your shoulder and say, “I’m really sorry. That’s awful.”

Julie: But when I had a diagnosis, it was astonishing to me the number of people who told me the story of someone who died of cancer. And I thought, these are kind, intelligent people, so they’re not allowing the frontal lobe of their brain to control their first impulsive reaction. [pause] Do you know what I’m trying to say there?

Cath: Absolutely.

Julie: Because, good people … you don’t … why share a death story with someone who’s facing a frightening diagnosis?! So because that’s so common, what can I say as a patient to the person I’m telling so they pause and think before they speak?

Cath: “I don’t need you to have an answer. I’ve had some really bad news and I just want to tell you what it is, but I don’t want to know what you think or what your experience of it is.” You know, if we’re honest with people and we tell people what we need; if we fire a warning short, if we say “I’m going to tell you something awful that’s happened to me. Don’t say anything, just give me a hug.”

Julie: Exactly. I think that’s very good advice. “I’m going to tell you something, I’m feeling fragile. Please don’t react immediately, I’ll let you know how you can help me later.”

Cath: Absolutely.

Julie: Just to give that pause … Look, you mentioned that it might be a good idea to hold off telling your wider circle until you have a clearer idea about your treatment. One of the things that can be a surprise is that you’re given this frightening diagnosis but then it can take some time before you have a clear idea of what comes next. This is something that Suzanne had to grapple with when she was diagnosed with breast cancer.

[music]

Suzanne: It is a process and it teaches you patience, because in the early days when you’re getting tested − it’s the waiting game. You wait ten days for this and five days for that and, you know, blood tests and pathology and everything takes so long. And you’re on tenterhooks the whole time waiting for the answer. And, um, so it just … I learnt to just take one day at a time.

[music]

Julie: For the person listening to this who’s just had a diagnosis, there can sometimes be a delay between that moment of diagnosis and when the treatment, starting to get rid of the cancer, is going to begin. Can you just explain − why is there that delay and what can a person and their family and friends do to help the person cope with that?

Cath: Look, it is one of the most difficult times psychologically. We know that because you’re given a catastrophic piece of information, you know, “You have cancer.” So our first reaction, after the “I can’t have cancer, there’s no family history of cancer. I don’t understand, how could it be there? I haven’t got a lump?” That conversation happens and then we say, “What can I do?” And the medical professionals say, “You can wait … You can wait until we’ve got your test results back and we’ve presented them to the multidisciplinary team and we’ll make a decision and that’s going to be at least two weeks − and then we’ll tell you what treatment we’re going to do first and there’ll be a delay before you have that.” Now that’s very easy to say, but to live, it’s awful, because every minute of every day, you’re waiting to know what to do next. So it’s really important to think to yourself: “Okay, I’m coming up to treatment, what could I do to get myself in the best place?”

Julie: Exactly what I was going to ask you! So, give me two or three things I can do to be ready for the start of treatment.

Cath; Look, for some people it is very much about, “Okay, I need to look at making sure I’m having a healthy well-balanced diet and I’m going to start going back to the gym.” You know? So for some people it’s stepping into very physical things. For other people it’s saying, “Okay, I’ve been saying for years I’m going to learn to meditate. Maybe now is time to do that.” What you do is… what’s so important is identifying the things that you know will help you, and then telling the people around you, “This is what will help me. This is how you could support me to do it. Come for a walk with me once a week. Come and do a meditation class with me?” If we learnt to tell people what we need, we would actually get our needs met more often. But we tend to expect them to know.

Julie: And also we may not know ourselves … Is it partly important too though to keep up a regular routine? I can understand doing life-positive things that you haven’t done before or lately to get ready for what’s a kind of job, or work, fronting for treatment and giving myself the best chance. But why is routine also important?

Cath: Because … structure comforts us, you know? So being able to still do our normal things is actually an important part. How we cope with that diagnosis and the initial part of it is avoidance – “I don’t want to think about it” − and we can’t think about it all the time. So if I can still go to work, if I can still take the kids to school, if I can still meet up with my friends for coffee − I still have a semblance that my life is okay … You know? So it’s reassuring − we need to be able to still do those things. It’s about tapping into the things that help me most. Some people will work longer hours at work … and that’s partly because they want to be ready for when they have to stop − if they have to stop. But sometimes it’s just about, “I’m going to step into a world, because at work I don’t have cancer − I am my professional self.”

Julie: [agreeing] Mmm … And it may take some weeks or even months before the person may discover − it’s not true for everyone − that life is actually never going to be quite the same again and that will include work. But you can’t come to those realisations in a few weeks?

Cath: No, no, you can try and force yourself [laughs] but you can’t actually know until you experience it. And so part of it is just maintaining life as normal, identifying some things that help me to feel I’m preparing myself. If you’re an avoidant coper, though, it will be about doing nothing, changing nothing, living exactly as I have lived, and I’ll deal with it when it happens. You know, we’re all different, so there’s no one right or wrong way.

Julie: One of the things I’ve heard that’s very important right from the beginning is to start a folder and to keep a record of your appointments and copies of your tests and so on − almost to begin to case-manage yourself. Why is that keeping of records so important?

Cath: I think the easiest way to think about it is − within the medical system there is no one person that is as interested in your outcomes as you are. And so you are the person that has access to all of that information − you may have to ask for it − but you are your best advocate. And when you’re travelling, particularly in between hospitals, never assume that that information will travel before you get there. So if you’ve got that information there, you can go in to every appointment prepared. It’s also really helpful psychologically to allow you to feel that you’re doing something in your care. So it’s actually stepping up and saying, “I have a role to play here, I’m not a passive subject that is at, you know, the whim of whatever my treating doctors decide. I’ve actually got my information, I’m in control, I’m taking it with me.”

[music]

Julie: You’re listening to The Thing About Cancer − a podcast from Cancer Council NSW. I’m Julie McCrossin and I’m talking to Cath Adams, a clinical psychologist from Newcastle, about some strategies that might help you cope after a cancer diagnosis. If you have any questions about this topic or you just want to talk to someone about your concerns, you can call Cancer Council 13 11 20. For links to more information or any of the services we mention, or to listen to more podcasts, visit cancercouncil.com.au/podcasts.

In a moment I want to talk to Cath about how to find support, but first we’re going to hear from David and Suzanne, because when they were having cancer treatment they found it really useful to talk to someone who’d had a similar experience.

David: I think there’s a whole lot of support out there. I think places like the Cancer Council offer that if you ring up and make a phone call and ask what’s available − they’ll direct you. And, um, when I was going through treatment, around the same time I had a cousin and a good mate diagnosed with cancer, so we’d often just call people, call each other, see how we’re going. “Oh, alright, so you’re having your PET scan next week? Yeah, I had that last week.” Well, you know, and they give you a bit of background about what it’s about and ask about the nauseousness, “What are you doing for that? What are you doing for this?” And so, I found that really helpful, and I think that’s one of the great things that Cancer Council offers, is Cancer Connect, which is what I’m on − peer support where you can call Cancer Council and they’ll give you, line you up with someone who’s been through the same − if not, really similar − sort of treatment and you can just have a chat to someone who’s been through it and is out the other side.

[music]

Suzanne: The lady that I had been assigned to for Cancer Connect, she was wonderful and she was only a couple of years older than me, had children a few years older than mine, and she was a few years out of treatment. So our lives were very parallel, I was just a few steps behind her. So she got me through the really down times I had when my husband was at work and the kids were at school and I’d be home on my own − my mother was terrific, she was around a lot − but those times on my own where your mind just runs wild. She, one day we were having our scheduled call, and she could tell in the tone of my voice I was not feeling terrific − it was about the second or third time she’d called me − and she said, “Now, I want you to do me a favour … open up your curtains, get out of the darkened room, and go for a walk around the block.” And I said, “How do you know I’m in a darkened room?!” And she says, “Because I can just tell by the tone of your voice! I’ve been there!” And I said, “Oh … okay,” and she said, “Go for a walk. I’m going to call you back in half an hour.” So I got up and I got dressed and I went for a walk around our block and it was, I was … really depleted of energy, but I made myself do the block, got back, she rang me and I felt sooo much better. And I said, “Thank you! That’s exactly what I needed!” But see, you need somebody who’s walked in your shoes to tell you that, because everybody else that tells you, you go, “You don’t know how it feels!” So yeah, there was a lot of help, a lot of help came from that Cancer Connect lady.

[music]

Julie: You know, talking to someone − some of us are, by nature, private − it is important that we try to reach out in some way to other people whether face to face, online, whatever − what are your thoughts there?

Cath: Look, I think … It really is something, we tend to feel, and we did a study in, um, gynae-oncology where we gave women who were diagnosed with a gynaecological cancer a distress thermometer − so a very simple instrument that asks about their levels of psychological distress. And of the women who … their levels of distress were high and so clinically we knew they were probably anxious or depressed or both, they were offered an appointment with the psychologist. Of the women who refused the appointment, when we asked them why, the most common reason was, “I feel I should be able to deal with this on my own.” Cancer is really hard, it hurts your heart, it’s scary. It is important to try and reach out. And that might be through support groups, that might be online, it might be talking to a psychologist or a social worker − there’s lots of different ways that we can do that. It might not work, and that’s okay, but we should open ourselves to trying to tap into some of that support.

Julie: Yeah, it’s a team sport. It’s a team sport for the professionals and a team sport for yourself.

Cath: One of the things that can help: often the people that don’t want to access support, even from people that are around them that love them – “I don’t want to be a burden” − if you just think to yourself how lovely it is when someone you love asks for your help, what a gift that is! We can actually support the people who love us by allowing them to help us.

Julie: And, I think we can support those closest to us, a partner for example, by also asking for help from others. Because I think perhaps we’ve all known someone who just can’t bear to get help from anyone but their wife or husband, and that can put an enormous burden on that person.

Cath: It can. Caring is a very difficult thing in and of itself. It is really important that we acknowledge that for carers this is really difficult, and let’s share that burden.

Julie: Look, just practical issues in that very, very beginning part of a diagnosis of cancer. We’ve talked about keeping records and keeping appointment records, possibly approaching someone to come with us to appointments and so on. But some of us have to get on with life, we may have children, we may have a job, we may have a mortgage to pay − so, what are sources of help and advice for the practicalities as you work out how cancer’s going to impact the rest of your life?

Cath: There’s a lot of support out there that we tend to push away. It’s actually easier to accept support while we’re still feeling well. So trying to understand what support is around and just asking − and look, I think talking to the treating team at the hospital that you’re at, finding out what’s available through the hospital is important. The social workers that have enormous amounts of knowledge around what’s available and the supports that you can access are a really good resource at that time. But then also, I think the Cancer Council 13 11 20 number is really important. They’ve got the answers for your local support sources, so just tapping into that. There are resources that you can take into your workplace to say, “Look, this is what’s happening to me. This is how you could help.” You know? There’s information in those resources around how colleagues can help support you, what’s useful, what’s not. Talking to bosses about reduced hours, you know, all of those things. It’s really difficult, but the onus for taking control of that does fall onto the patient, but we often feel like we have to do that without seeking help and support.

Julie: We’ll put links to those resources about work on our podcasts page at cancercouncil.com.au/podcasts and just click through to this episode. You’ll also find links there to the ways that Cancer Council can help you with other practical issues that might come up − things like financial issues, legal issues, transport to treatment, accommodation, home help and lots more.

Now Cath, I want to ask you about two more possible sources of support. First of all, spiritual beliefs and then creative outlets. Let’s start with the spiritual or religious, your observations there about that as a source of support?

Cath: Look, I think it can be an enormously powerful source of support for people, and certainly, within the psycho-oncology field, the recognition is that if people have a source of belief and they tap into it, that will help them get through. There was a beautiful study done in San Francisco about 20 years ago where they actually got a list of the names of people who were diagnosed with stage 4 cancers, they divided those people up into an experimental arm and a control arm. The experimental arm were put on the prayer lists of different religions, and the list that you were on didn’t necessarily relate to your belief in any way. So they had Islamic, Buddhist, Christian and there was another… Zoroastrian, I think? And the really interesting thing they found was that people whose names were on those prayer lists lived on average three to six months longer than the names of people that weren’t on prayer lists. Now this was a randomised study − what was the effect? We don’t know. Was it knowing that I was being prayed for? We don’t know, we just don’t know. But there’s … it’s important that we tap into what helps us. If something helps us, it helps us! If something doesn’t, if it hurts us − we should stop.

Julie: And what about creative outlets? Knitting, crocheting, whatever?

Cath: Absolutely. Often, anything like that is actually a form of meditation − it’s a form of stilling our mind, our mind that is overwhelmed with fear, with anxiety, with all of the associated emotions. You know? If I’m sitting crocheting, I’m just crocheting, I’m just focused on what I’m doing. If I’m painting, I can actually express a lot of my emotions through what I’m painting.

Julie: Woodwork? I’m trying to think …

Cath: Absolutely! Woodwork, we’ve got some fantastic tables that have been made by local men’s shed cancer support groups, you know. It’s about turning yourself to one thing that’s not cancer and allowing yourself to be immersed in that. So for any of those activities − very, very beneficial.

Julie: So for people who’ve just had a cancer diagnosis or might be part way through their treatment − is there anything else you can think they should be aware of?

Cath: The other thing that it’s really crucial to try and understand as a patient and as a carer, and as anybody involved, is the cancer journey doesn’t finish when treatment finishes. In a sense, that’s the beginning of the emotional journey for cancer.

Julie: Can you explain that?

Cath: When we’re having treatment − we come in, we routinely see people, we’ve got contact with our professional medical team, you know. Particularly if we finish our treatment with radiation therapy, we’re coming in every day for five or six weeks for every weekday. There’s lots of contact, lots of support, we get to the end of that treatment, our doctors say, “Look, everything looks okay, can’t really tell you anything for a few months, so we’ve made a follow-up appointment for three months’ time and we’ll see you then!” You walk out the door and think, “Well, what do I do … what do I do in that time?”

Julie: Look, if I go to the “What help can there be for a person at the time of disorientation at the end of the treatment?” − that may well be when you want to ring the Cancer Council, when some peer-to-peer counselling or being involved in a group or an online group, you might want it then rather than in the intensity of treatment. It’s hard to predict, isn’t it, when you’re going to need support?

Cath: It’s really difficult and, look, through the treatment phase, you’ve got something to do. You’ve got a structure, you’ve got a plan, you’ve got a routine. When treatment finishes, all of that is gone and the primary question that you have is, “How do I know that it’s gone? How do I know if it comes back? I don’t understand. What … who do I ask?”

Julie: And we should say that there’s often tests several months later that allow them to see the degree to which the treatment is effective and you can get a reasonably secure answer at some point but you’re living with ambiguity. In a sense, someone listening to this who’s just had a diagnosis, they are on the beginning of a new experience and the word “cancer journey” that you hear − and I think it has some merit myself − but what’s the metaphor or story that helps you to understand what a patient is about to begin when they get a cancer diagnosis?

Cath: So, often when I’m talking with patients, I’ll talk about being diagnosed with cancer as being similar to waking up on a beach that’s unfamiliar with a strange man standing next to you and he says, “Look, hi, I’m Dr So-and-so, I’m really sorry but you have cancer. I’m going to be coming up with a plan for your treatment and that treatment will happen on the island you can see just over there. I’m just going to hop in my boat and go over there and plan your treatment. Meanwhile, you get to that island using this coracle.” Now, a coracle is a little shell-shaped boat that you stand in and you have to balance and paddle yourself. So it’s a whole new experience − and that’s what cancer is. It’s not something we know, and we can’t know until we actually experience those words directly applied to us. So we manage to get to that island, we get our plan, we have our treatment, we get through that with a lot of support because there’s a team around us, and then it’s the next stage in our treatment. And so, Dr So-and-so says, “So, that will actually be on that next island. So I want you to pop back in your coracle. I’ll be taking the rest of the team in a cruise liner to get there, but we’ll meet you there and we’ll have a plan.” So again, you know, you’re back on this little wobbly thing, trying to get through the rough seas and the uncertainty of not knowing how big the next wave is going to be.

Julie: So, what are you conveying with this metaphor? What is the message in a nutshell?

Cath: It’s an unknown thing. We expect you to get yourself, to navigate, the most difficult parts psychologically, without necessarily giving you much guidance. Because once we’ve finished your treatment, we say to you, “So now, we think it’s worked? It all looks good. We’ll do some tests in three months’ time. So we’ll meet you, it’s on an island, it’s just over the horizon, you can’t actually see where it is. But you’ll find it!” And off we go. And you’re left with that sea of uncertainty, you know? And that’s what we forget. Psychologically, cancer is a sea of uncertainty that you have to navigate.

Julie: Now, most of us with family or friends or one or two discussions with a member of the multidisciplinary team, or perhaps a visit to the clinical psychologist referred to us in the team, will muddle on and get to all the islands and get over the horizon and recover. But some people may get very, very distressed indeed, and I suppose I wanted to hear from you, if you’re having a lot of intrusive thoughts, a lot of distress, a lot of anxiety, it’s interrupting your capacity to manage your family affairs and so on − what’s the help I should get?

Cath; So if you are able to talk about that with someone on your team, it’s a good idea to either give the team a ring or to talk to someone while you’re in the hospital. But if you’re at home and you don’t have that access, picking up the telephone and calling 13 11 20, the Cancer Council Information and Support, there’s health professionals on the other end of the line. But if this is an actual crisis point, where you are overwhelmed and you don’t know what to do, Lifeline is always there − there is always someone on the end of the phone you can call and say, “This is what’s happening.” Because often in that situation, we just need someone to hear our experience.

Julie: So Lifeline is 13 11 14. And of course, I guess, your general practitioner, you may have clinicians in your life you can go to. When should you say, “Oh, I really do think I need to see a psychiatrist or a psychologist.” How do you make that call?

Cath: Well, I guess the first thing is, if someone suggests it to you, not to have that initial reaction that says, “Well, I’m not crazy.” But just ask why they think you might need to do that. If you feel that your anxiety, that your worried mind, that your fears are actually stopping you from doing things − and that might be stopping you for coming into treatment − then that is a time to talk to someone. There are very simple strategies that we can use. You know, one of the simplest things we can use to still our anxious mind is to disengage from the story and focus in on one simple thing. And that might be our breath, just taking three big, deep breaths − breathing in, breathing out and holding it out; breathing in, breathing out and holding it out. That helps to calm us. It might be identifying five things I can hear. It might be sitting − and this can be a really useful one if you’re sitting, waiting for chemotherapy to be administered − focusing on your toes and just moving your two big toes together and then your two first toes. And only moving those toes on each − it focuses us in. We can’t worry when we’re focused on a single point or thing. Simple strategies.

Julie: I’ll just share one thing that helped me. I was advised to keep a little diary and to write some feelings down, and then I could show them to a clinical psychologist who was giving me some help.

Cath: Exactly, and often those things are the most powerful things that you can share with the team because the treating professionals often lose touch with what’s happening in your heart, and if you don’t share that with them, they can’t know. But they want to know! So we do need to do that − but don’t ever be surprised by what appears in your diary [laughs].

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Julie: That’s it for this episode of The Thing About Cancer. Thanks to Cath, David, Suzanne, Maria and Len for sharing their knowledge and 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 useful, you might be interested in our podcast on how to help someone with cancer. We talked to Kim Hobbs, social worker from Westmead Hospital, about what to say and how to offer meaningful support when someone you know has been diagnosed with cancer.

Kim: 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: Look for that episode, How to Help Someone with Cancer, on our website at cancercouncil.com.au/podcasts

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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 you’ve been listening to “The Thing About Cancer”, a podcast from Cancer Council NSW, produced by Jenni Bruce and Miles Martignoni.

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