Video Transcript

Innovations in Managing Distress & Recovery, Part A

The Head & Neck Cancer Innovations 2020 Video Series is brought to you by St Vincent’s Hospital Sydney & The Kinghorn Cancer Centre. In this episode we talk to clinical psychologist Dr Ben Britton, from Calvary Mater Newcastle and behavioural scientist and researcher, A/Professor Haryana Dhillon from the University of Sydney about innovations in treatment for head & neck cancer patients, including psychological support for patients experiencing distress in the short and long-term. We also hear from three head and neck cancer survivors, Garry Mar, Denyse Whelan and Maureen Jansen. For more information please visit our website or our You Tube channel. The podcast versions can be found on our SoundCloud channel.

Julie McCrossin, Head & Neck Cancer Survivor
Gary Mar, Head & Neck Cancer Survivor
Denyse Whelan, Survivor & Ambassador, BeyondFive
Maureen Jansen, Survivor, Head & Neck Cancer Support Aoteroa
Dr Ben Britton, Senior Clinical & Health Psychologist, Calvary Mater Newcastle
A/Prof Haryana Dhillon, Senior Research Fellow & Director, Centre for Medical Psychology & Evidence-Based Decision-Making, University of Sydney

Julie McCrossin
Hello, my name is Julie McCrossin and welcome to this video about managing distress with head and neck cancer patients. Seven years ago I was treated for stage four throat cancer. Oropharyngeal it is called, but it was in my throat, tonsils and in the back of my tongue. And I was treated with radiation and chemo and I’m still here.

And this video on managing distress is one of a series of videos looking at innovations in treatment for head and neck cancer patients to both improve survival but, equally importantly, quality of life. And these videos are hosted by St Vincent’s Hospital Sydney and The Kinghorn Cancer Centre.

And before we begin, I’d like to acknowledge that we’re broadcasting today on Aboriginal land. And to acknowledge the Gadigal people of the Eora nation, their elders past and present and emerging leaders. And also to acknowledge that many Aboriginal and Torres Strait Islander people are disproportionately affected by the sort of head and neck cancers that we’re talking about today.

So, in just a moment, you’re going to hear just a little bit of the story of three very different head and neck cancer patients. And then we’ll meet four clinicians who, three of whom are working on a daily basis with patients and families, and one of whom is doing important research. So welcome, and thanks for joining us.

Maureen Jansen
Maureen Jansen from head and neck cancer support Aotearoa, New Zealand again. Julie has asked me to talk about mental health and head and neck cancer. And I could go on about this for ages because I’ve had three bouts of head and neck cancer, getting more disfigured and disabled each time but still here.

And I have boiled down my thoughts as a long term patient on mental health issues, and I’ve come up with three things I think are important for me as a patient and to carers who look for the situation with their spouses, partners, etc.

The first one is medication. I don’t know if all patients realize that there are useful medications that can reduce the pain the grief the anxiety and the fear and the panic. There are anti-anxiety medication. Which I have never been offered, never taken. Fortunately, I probably haven’t needed them but antidepressants have served me very well indeed Citalopram to keep me thinking a bit more positive positively not being a net dull, aching panic, anxiety ridden mode long term.

I think they’ve helped, together with my second piece of advice or strategy which is seeing a counselor, a psychologist or a psychiatrist. I don’t know if all patients – especially men – accept that this is just a practical helpful aid to coping with a cancer that is so isolating and disfiguring. So had such terrible treatment over many weeks that can lead you pretty emotionally scarred.

So I think that normalizing psychological help is a very good thing. It’s happening now, the can’t get them fast enough. And I found that I have had free counseling from Cancer Society psychologists and they’ve helped me to sort out what is rational for you from what is exaggerated irrational fear.

And they’ve given me strategies like mindfulness, like things like taking photographs of nature and sharing them and gratitude for the things that are good in our lives. Taking things a step at a time and not catastrophizing, when you don’t need to.

And just do it intimacy of strangers. Your friends and family can’t really deal with all your grief. It needs a stranger to look at it in perspective and help you. Maybe in a, seeing it more clearly perhaps and putting it in perspective of what most patients feel, and what are the best ways to deal with it.

My third method of dealing with the grief, pain, depression, anxiety of head and neck cancer is peer support. This is maybe shouldn’t be top of the list. When I first got hidden at cancer, I was so worried that I’d be so disfigured that I was so disgusting, I’d be isolated my life would be over even if I survived. That I joined the National Cancer Foundation and America they helped me hugely.

A big pool of experienced patients, some of them with excellent peer support skills and tons of information. And now we have the Aotearoa group, a Facebook group. And for all Facebook CERN’s, this has been a great group for me to help manage. It’s not only getting support from your peers, but giving it that helps ease the troubled soul.

So those are the three things that I’ve boiled down to for dealing with mental health issues, and there’ll be many more and they don’t work for everyone. But I hope that gives some focus for discussion. Thank you.

Denyse Whelan
Hi, I’m Denyse Whelan and I was diagnosed with Squamous cell carcinoma in my upper gums and under one lip in May 2017. But that the news of having cancer actually was a relief in some ways, because it helped answer some of the mysteries of why my mouth have been playing out for so long. And I will admit to that I was quite an anxious person in the months and years leading up to my diagnosis.

In the preceding years to my diagnosis from ages around 65 to my diagnosis time in 67, I was quite an anxious person getting over the, what I would now call the grieving period of transitioning in my life. I had retired from all my education work, which I loved and we had sold a house in Sydney and moved away from friends and family up to the central coast. And yet I was anxious.

I needed psychological help. My husband was a great listener and still is, and I had an awesome GP.

The thing is, though, I needed some better skills to deal with the inner turmoil I was experiencing, and I did find a psychologist who taught me a great deal about my inner strength so I could tap into I guess. And she introduced me via ACT, acceptance, commitment, theory or therapy, and some CBT cognitive behaviour therapy, and I learned about exposure therapy.

On the day I found out that I had cancer in my gums. I was alone, I took a phone call from the lovely oral surgeon who’d done the biopsy the week before, and I think I sensed that the news was not going to be great. So whilst I had a teary reaction, and was able to summon my husband back home from the work he was doing as a volunteer, I actually then my head went into a different space. It went into the organizer that I am the planner that I As I started to seek where I would be having a consultation, in fact, it was the very next day at Chris O’Brien Lifehouse with my surgeon, who was, still is Professor Jonathan Clark.

Getting there, though, was the hard part. You say my anxiety still had a great hold on me. And I was fearful of the drive. It was to Sydney for two hours. I was scared about my IBS that may have impacted me. But my husband, who was amazingly patient, still is, and my GP just said, Denise, you know, going to do it. And in fact, I did do it.

I did it with lots of help. I used some medication. And I got to Chris O’Brien Lifehouse to hear the story of what was ahead, the surgery that would end up taking 11 hours. Once I knew what was ahead of me scared as I was of the idea that I would lose the upper part of my mouth. I had to trust and I did trust in the team that was going to look after me.

As someone who like many wants to be controlling control of everything, I realized this was something I couldn’t actually control, and that the only thing I could control was me and my reactions. So I needed to embed some mindfulness practice, which I was already doing, but I needed to increase it. And I needed to use some distractions, and so on, as I waited the long seven weeks before I finally had that surgery.

As a teacher and a talker and an eater and a smaller, it was incredibly important for me to hope that I could have all the skills that I valued such as talking, eating, drinking and smiling, and in fact, when I recovered from the 11 hours of pretty drastic reconstructive surgery, my first words were, oh, I can talk that was incredibly powerful and empowering.

I then recovered over the next 10 days at Chris O’Brien Lifehouse and each person each medical personnel, each support person who came to see me went wow you’re looking good. By their comments, and by how I felt inside, I knew that I was on my way to wellness, even though it was one heck of a journey, and I knew it would take a very long time.

Using those skills over the next two and a half to actually three years now has become a practice. In fact, my mental health has never been better. I do though, have to keep check of down days and I have to be remain patient as I wait in between surgeries. I’ve now had four.

But I am going extremely well. One thing that I stand by is having a routine. I was pretty routineless in my early years of retirement, but having a routine something to look forward to something creative to do every day, something social to do every day, which is when I go out for a cup of coffee and get myself dressed up to do so, has made the world of difference.

I hope that sharing my story might help others know that having a cancer diagnosis particularly one that’s in the head and neck may not necessarily be all doom and gloom, it may be a chance to grow

Gary Mar
Hello, my name is Gary Mar and I’m a head and neck cancer patient. I had 8 weeks of radiation, chemotherapy PEG tube and the mask, the mask!

Very stressful times I didn’t cope very well. Psychologists, psychiatrists and my own biopsy doctors and keep motivating me, helping me encouraged me to keep going because I gave up many, many times.

I want to talk about the stress the distress, and what to give a suggestion to help people get through. Because the doctors and nurses they kept telling me to do these things, to keep eating, trying to feed myself through the PEG tube and other things and I just could not do it.

And I asked if I could talk to another patient just to get some ideas and help as to how they coped. And their answer was for privacy reasons they couldn’t give me any names of anyone else I could talk to. It’s a very lonely journey when there’s nobody to contact, to relate.

And it’s a very, very difficult struggle.

Later on down the track, couple of years down the track, I found a flyer for a head and neck Cancer Support Group in the Central Coast. And I went to that meeting, and lo and behold, met hordes of people that underwent the same thing as me. And we all shared a lot of good suggestions about how they coped through the scenario of the mask and the PEG tube and feeding all this stuff.

I only wish I had that at that time. And so my suggestion is for doctors and nurses in the cancer center to recommend new patients to get in contact with support groups at the very early stages during the time when they really need it. At least they’ve got that contact and they can go through and talk to people.

And to summarize the differences, is the difference between sympathy and empathy. The doctors, the nurses can give you sympathy. They go through a script of telling you what to do when you throw things back. I can’t do that. I don’t know what to do. They can’t help you. They really can’t.

But other patients have been through it they can give you empathy. And it’s empathy that is really, really valuable. They know what’s going on in here. They know what’s going on in your heart, and they can relate to you.

And they’ve had all that experience that within the group, I can give you so much tips and ideas of how to get through. That’s so so valuable.

So my innovation recommendation is for all doctors to promote and push support groups. They’re very, very valuable. The head neck, beyond fire, they have a whole list of all the support groups are currently available.

And we’ll keep adding to that list as more and more support groups evolve. And for other cancer groups, obviously the cancer center they can definitely help.

Thank you.

Julie McCrossin
So look, let’s begin. It’s my enormous pleasure to welcome Dr. Ben Britton and also Haryana Dhillon. Ben, can I start with you? Do you want to introduce yourself?

Ben Britton
Sure. So I’m Ben, I’m a psychologist. I live and work in Newcastle. And I suppose my experience with head and neck cancer patients has been working clinically for a long time, but also done quite a bit of research. And that tended to be the group that I work with in terms of research.

Julie McCrossin
And I’d like to come to that research later. But we’ve just seen a little bit of the story of three people. My first question to you is, what are some of the sources of distress? The causes of distress for head and neck cancer patients? Just from what we’ve heard so far, what, you know, came to your attention?

Ben Britton
Yeah, I mean, I think what stood out for me is the lady from New Zealand sort of mentioning, and indeed the other lady, talking about changes to what makes their life feel good, meaningful. So talking and eating and socializing. Just that everyday stuff. And I think the impact on everyday living. On what we usually do to cope, what we usually do to enjoy ourselves and make it make life feel worthwhile, is really impacted on by head neck cancer. Both the cancer, but also the treatment, you know, it’s quite a rough treatment in that sense,

Julie McCrossin
Just in a nutshell for someone who might be a new member of a clinical team and they’re just beginning to work with head and neck cancer patients. Just in a nutshell, why is it considered a rough treatment?

Ben Britton
Well, I think both the level of obvious disfigurement, or potential for obvious disfigurement, in the surgery is probably disproportionately high in head neck cancer. And I think also, the changes in functioning, both from surgery and from radiotherapy are disproportionately high.

There are just a lot of things going on in your head. And there’s a lot to be affected. So eating, breathing, talking, swallowing, communicating. There’s just a lot that happens in there. And it’s very hard to spare the remaining bits, the non-cancerous bits.

Julie McCrossin
You know, I’ve visited your hospital Calvary Marter in Newcastle north of Sydney and I have been pushing you get quite a lot of head and neck cancer patients. We’re talking about managing distress. How do you know if a patient is distressed and needs extra help? And given the nature of this tough treatment? Does everybody need help to some degree?

Ben Britton
Do you know, what, my response I think is, it doesn’t matter if you know, you’ve got to deal with whoever’s in front of you in that moment. So we have screening programs.

Julie McCrossin
What does that mean?

Ben Britton
What does that mean? What that means, let me tell you. We have we have screening programs that are designed to pick up people who meeting sort of clinical levels of distress. And that might lead to an anxiety disorder or a mood disorder, depression, some of those.

But one of the things I think is really important, and one of the things we’re trying to do, is train everyone, not just the psychosocial people, to be able to deal with whatever distress they’re presenting with in that moment. Because I think, as you say, probably everyone needs to at least have their distress addressed. And that doesn’t necessarily mean everyone has a mental illness or even needs to see a mental health professional.

But I think one of the important things, and this really is the other thing that struck me was the gentleman, Gary was saying, you know, the doctors and nurses, they can’t empathize with that stuff.

Ben Britton
I think, you know, it’s one of those things that a lot of the technical specialties can get so caught up in the job that they’re trying to do, which is very important and they do need to concentrate, but sometimes they can give the impression they can’t empathize. And can’t connect. And can’t deal with distress, even when it’s sitting right in front of them. So groups like the doctors and nurses, or radiation therapists and all of allied health…dieticians, speechies are particularly important in this group…there’s a lot of stuff that can be done where they don’t have to be specialists in mental health to deal with someone’s distress in that moment. And that that will be almost everyone.

Julie McCrossin
Can I now turn just to you. Give us two or three brief examples of what you actually do, as a senior clinical psychologist, if someone is referred to you by a speech pathologist, a dietician, a radiation therapist or nurse? Just concisely, what’s the sort of help? Someone could be watching this, should I go to the clinical psychologist? You tell me.

Ben Britton
Yes, yes, they should.

Julie McCrossin

Ben Britton
We are problem solvers. And so what I do is, first…well, broadly what our job is, is to help people build a better or worthwhile life. And so what you do is, initially, find out what is getting in the way of that. Why do they feel that their life is somehow really hard as Gary said? You know, is it becoming too, you know, beginning to feel not worthwhile to them? And then using all of our background and all of our knowledge, build something for them specifically. So…

Julie McCrossin
Be specific, give me an example.

Ben Britton
Well some people do really need that social support. And some people, you know, as Gary said, a support group is the key that unlocks everything. Some other people, though, are very, very private. And iit might be something about eating in front of the grandchildren. So they don’t want to scare the grandchild. And so I had one lady that was an issue. And so it was about overcoming that. And that was very much a very behaviorist approach, which is literally exposure. Practicing a little bit at a time. Starting with small things. Moving up into something more difficult, more challenging for her and noticing that their reaction wasn’t to run away from Grandma,

Julie McCrossin
Could I just check I understand that you encourage this person to eat in front of their grandchildren, something easier and then getting harder and harder, so it could be potentially more messy, or more dribbling, and just get more confident about eating in front of the grandchildren?

Ben Britton
100%. If that is the issue. Okay. But the real difficulty with psychological strategies is that nothing works for everyone. And so, anything that works for one person may not work for everyone. And so really, you know, the way to see this is we’re just tradies. And you need to come and see the trade person and if it doesn’t work, the first thing doesn’t fix your problem, you need to keep going and have another solution. And try something else. Because not everything works for everyone.

Julie McCrossin
I just want to ask you , there’s both the help you might need during treatment. I personally, when I had radiation therapy, 30 sessions, saw a psychologist to help me cope with the panicky feelings I had inside the mask by giving me something to think about. But there’s also people who can be distressed some years later. So again, just briefly, how available is the psychologist in the cancer team, wherever people watching this are getting their treatment? Is it just in the first few weeks? Or can we have access to you later? What’s the what’s it like in your centre?

Ben Britton
With us, it’s unlimited. So if you if you’ve ever had any contact with the Mater, the psycho-oncology services available to you, including your family carers. Even after someone passes away. So it’s a very open service and very supportive. I’m not sure, I can speak for others, but I think it’s worth asking wherever you are, it’s worth asking. Because you might be surprised how available it is.

Julie McCrossin
Should this be the single most important message out of this video for patients at the moment , or people who are recovering, ask for help? If you need it, find out what’s available. Ask.

Ben Britton
100% Yeah, yeah, I think, you know, see it as, as problems to solve. And, you know, one of the ladies mentioned, you know, blokes being reticent to speak to someone. But, you know, as I say, if you’ve got something wrong with your toilet, you get a plumber. So say it is a problem to solve. Do you know what I mean? And that can be really helpful for blokes to just say, Well, look, I’m feeling this way, or I’m having trouble with this. You know, I’m avoiding that. And it’s getting in the way of living a good life for me. So do something about it. And that’s the trade to see.

Julie McCrossin
Come to Haryana Dhillon now but I love the idea of a tradie. It’s I think that’s a very helpful analogy and you’ve got a toolbox with help in it. It’s very interesting. But Haryana Dhillon, can you introduce yourself and tell us what you do?

Haryana Dhillon
Sure. So I’m a behavioural scientist at the University of Sydney. And I work only in research. But most of my research is really around what are the experiences of people with cancer, and including head neck cancer, and how we might, sort of, help them deal with that and live the lives that they want to.

I guess a lot of what I do is around putting the patient, the person with the illness, at the centre of the problem and trying to work out how we make the systems work better and also to support those people.

Julie McCrossin
Before I ask you about a couple of bits of current or recent research that you think offers us some insight into this managing distress, I guess I’m interested In your sort of overview of, do you think our health system gives equal attention and care to the emotional impact of cancer as it does to the physical?

Haryana Dhillon
It’s a great question, Julie. And I think the short answer is no. So we’re very focused on disease sites and the diseases that people have and where that happens in their body. And we’re not looking at that as a whole of system problem. And really, that’s the impact of the illness on people emotionally, on their lives and how they live them. And I think, you know, we really need to look much more holistically at how different illnesses and treatments have an impact on all of everyone’s life, all of those aspects and they’re all equally important to the person living with illness.

Julie McCrossin
Tell us about a couple of bits of research that you think will inform both the patients and the family, and also the clinicians watching this, about head and neck cancer and distress?

Haryana Dhillon
So I think there are a couple of things that we are really very focused on at the moment, and a lot of the work that we’re doing, around the impact of the mask. And how we try and minimize that impact, because it’s obviously, as you heard from Gary in the video, how distressing having to have that mask, which is really there to keep him safe, but also actually meant that he couldn’t move during the treatment, and what that felt like for him. So…

Julie McCrossin
Could I just say, just for anyone who might be right at the beginning of their cancer experience that the mask is a personally-created way to hold your head still, while you have radiation therapy, to tumors that might be in the head and neck. So it’s really a safety mask to keep you still. But for some people, it can be a claustrophobic experience, to varying degrees of intensity, whereas other people aren’t bothered by it at all. So that’s the mask but Gary kept going “the mask” you had a sense that it was hard for him. But yes, go on and tell us about the work.

Haryana Dhillon
Really interesting, you know, and people don’t necessarily know what their reaction to the mask is going to be until it happens. And it can vary over time. And we’re not very good at actually predicting, or working out who is going to find the mask difficult to deal with when they first start the treatment, or the people for whom it’s going to get more difficult over time. And so I think we need to be much more aware of that.

So actually being able to screen for the kind of experience that people have. To ask them about how they’re finding it? And what the what the experience is? Rather than waiting until someone who’s in, you know, extreme distress, and really finding it very difficult to cope with treatment, before we start to help them with that.

Because as Ben’s already alluded to, we’ve got lots of tools that we think can help with that. And they’re going to be different for different people. And it might be different at different stages.

So it may be things like one of the studies, where we had interviewed people who had an experience with the mask, they told us about the things that they did, while they were having the treatment to help them cope with that. And for some of them, it was singing songs that they knew, or listening to music that they knew was the right duration for how long their treatment would take. It might have been counting the number of times the machine had clicked over. And just, kind of, sometimes very simple things like that, but enough to take the focus away from what they’re feeling and in actually in the mask and distract them from that a little bit.

Julie McCrossin
In that research did people talk about asking for mild sedation, Ativan or Valium or something of that nature?

Haryana Dhillon
They sure did. And for some people, they used that all the way through their radiation treatment because they didn’t feel that they could cope with it without it. But that has other knock-on effects for their daily life and going into radiation every day. It means that they then cannot drive themselves home most of the time and, and things like that.

So it has an impact on the support that they need, in practical terms. Other people were fine to start with, but really felt that, as things became more challenging, because they were experiencing more symptoms, they actually needed more support then. And other people used it for one or two sessions, and then actually felt that they’d adjusted and they knew what was going to happen.

And they felt that they could cope with it without that. So, you know, it’s not the same pattern of use of any of these kinds of tools that you’ve got to for any one individual. It’s going to be different for each person.

Julie McCrossin
I think you’ve done research as well into a clinical staff working with head and neck cancer patients and the mask. Can you tell us about that and key lessons?

Haryana Dhillon
Yeah. So I think some of the work that we’ve done there is really that people feel very under-prepared to deal with what the response is. So that they know that some people are going to have difficulty, but the systems that they’re working in, In terms of the time constraints, and that they’ve got a backlog of people who are waiting to come into treatment, means that they don’t feel that they’ve got the time to take to deliver the support that perhaps they think people might benefit from.

And also, just a lot of the time, many of our allied health and medical colleagues are not trained specifically in dealing with emotion and communicating with people and responding to those sorts of situations. So I think the work that Ben was talking about, actually helping everyone else in the team to develop the skills to respond appropriately, you know, in that moment can make a huge difference to people. And they was certainly some of the things that came through very clearly when we talked to health professionals.

Julie McCrossin
I’d love you to talk about whatever research you feel is most relevant but the question I have, because I really only have time for one more example, unfortunately, is longer-term survival. People these days talk about “survivorship”. You very rarely hear the term “rehabilitation”. Whereas in some other medical areas, if you have a stroke, people do talk about your emotional rehabilitation, as much as your physical rehabilitation.

So, where are we up to in our thinking about rehabilitation? And what is this word “survivorship”? Where are we going in the future? The research, you want to see the change you hope to see?

Haryana Dhillon
So you’ve hit on one of my pet topics, Julie. So I could talk about this for hours. But I think survivorship really is referring to what happens after your diagnosis. And we’ve kind of had this very limited perception of survivorship as being when you finished your treatment.

And that’s changing quite significantly, particularly because we have people who are in lots of different tumour groups who are living longer-term with metastatic disease, so advanced cancer. And what that has tended to do is then start to make us think more about what’s needed to support someone in their environment.

And so rehabilitation is not a word that you hear very commonly in cancer. We talk about you, you treat the cancer and you manage the cancer, but we don’t then rehabilitate the person. So this is really a new area for us a new way of thinking. And I think we need that focus on what does someone need in the first month, the first three months, in the first six months after they’ve finished a particular type of treatment?

To help them get to the level of function that they had previously, or to be as well as they can? And the other thing that I think is really interesting about survivorship, often you’ll hear this term, “the new normal”. And that’s one that worries me quite a lot. Because I think sometimes the implication is, when you talk about the new normal, that people take away and go, “well, this Is what my life is like now”.

And they think that things cannot be improved and then it can’t get better. And what I think is really important is that we make it clear that, whatever situation you’re in now, there are things that we can do to deal with whatever the problem is that you’re experiencing. Whether that’s a physical problem or an emotional problem. You know, we want to pull out Ben’s tools and apply those to make someone’s life as, you know, the best that it can.

And I guess the other area that I think is really worth highlighting in relation to that is the fantastic work that the Cancer Council does. And so again, the Help Line number 13 11 20, is a place that you can go to find out about a range of different sorts of interventions that are available in the community.

And I think one of the challenges for health professionals is actually being aware of all of the things that are happening in community. And so I think that’s a really important thing for people who are living with the disease, or living beyond it, to actually understand. This is where you can go to, sort of, tap into some of the things that you may not hear about otherwise.

Julie McCrossin
Thank you. I’m just going to make a comment. And then I’d love to hear from you, Ben. And then from Haryana about it . Before we move to other people, who are also working with the head and cancer patients, to try and help them manage the stress. And I’m seven years since treatment, I’m immensely grateful that I’m alive and I was treated with radiation and chemo and I don’t have external scarring. In that seven year period,

I’ve come back to this building we’re in, because this these videos are hosted by St Vincent’s Hospital Sydney and the Kinghorne Cancer Centre. And we’re sitting there now. I’ve come back here many times. I’ve had all sorts of tests. I’ve had things called PET scans that check if there’s cancer in me.

But I haven’t had a single person ask me, “Have you managed to have a sexual life again? Have you managed to kiss?” And I haven’t had anyone say, “How are you coping with the fear of recurrence? You know, the fear that it will come back?”

I’m actually not, I’m not meaning to complain. I’m more astonished by it. Fortunately, I do know about Cancer Council 13 11 20. And I have rung them and I have got help. But it’s what will it take to change the mindset of our multidisciplinary teams – most of us are so grateful for their work – that they deal with our emotional and sexual life as much as our physical recovery?

Ben Britton
That’s a very good question. What will it take? I believe…So part of the problem is specialization. Everyone has got very specialized. And I think a lot of the teams feel that that’s, oh, that’s Ben’s job. Ben will ask those questions. So I don’t need to. And that’s fine. Except I don’t see everybody. And they do.

So I think it’s about generalization, less specialization. And the way to do that, you’re saying what will it take? This is just my opinion. But I think, and we’ve had some good gains in this area, is if you can show how understanding about the patient’s mental state. Understanding about their sexuality and any other elements that make their life feel really worthwhile and important to them, how they impact on the very narrow medical thing they’re interested in, because we know it does.

If you can make that therefore part of looking after this narrow thing, suddenly they have to widen their view and say, I also need to look after and ask about these other things. That’s, I think, how, when you’re asking what will it take? I think it’ll take that – to share responsibility via linking to the thing that they already feel responsible for.

Julie McCrossin
Thanks Ben. Thank you. What about you?

Haryana Dhillon
Well, I think I would largely agree with what Ben’s been saying. And I think I would really add that the best person to deal with a particular problem for a patient and to help them find the right tools is the person that the patient connects with about that problem. And so that sometimes is not going to be Ben or me or someone from the psycho-social team. It may be the radiation therapist. Or it may be the nurse, or, you know, the dietician who is dealing with that problem.

So trying to make sure that those people are confident in their skills to respond to those questions is really important. And then also giving them a pathway. So if they find that that someone is asking them about a problem that they are not confident to deal with, or they’ve kind of reached the limit of their knowledge, then they’ve got some way to say, “Well, actually, this is beyond my skill level. So let me take you to the next person and make sure that referral happens. So those kinds of clinical pathways are incredibly invaluable for providing really practical guidance to people in their own hospitals and systems about what’s available.

Ben Britton
Both takes confidence, doesn’t it? Because either you have confidence to have the conversation, or the confidence not to just close your eyes and pretend it didn’t happen, and do something about .Yeah.

Haryana Dhillon
And I think, if I can just add, one of the big challenges for us is that we’re, you know, as professionals, we’re all wanting to know the answer to the question. And there’s some of these things we don’t know. And again, I, I don’t know that I can fix this problem for you, but we can certainly help with some tools around that.

And sometimes there isn’t a solution, but most of the time, there will be something that we can do to alleviate it a little bit. So having the confidence also to say, “Actually, I have no idea. But let’s let me find out.”

Julie McCrossin
Look, Ben Britton, Haryana Dhillon, thank you so much. And I’ll just let you know that we’ve got two more very interesting people who work directly with head and neck cancer patients coming up shortly.

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