Innovations in Managing Distress & Recovery Part B
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 psycho-oncology social worker, Teresa Simpson and radiation therapy clinical nurse consultant, Michelle Roach about innovations in the treatment of head and neck cancer patients, particularly ways to help people with distress, the long-term side-effects of treatment, patient support groups, pre-treatment clinics and specialist nurses. 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
Teresa Simpson Psycho-Oncology Social Worker, Liverpool Hospital.
Michelle Roach, Radiation Therapy Clinical Nurse Consultant, Liverpool Hospital
Julie McCrossin
Now we’re joined by two people who work with patients on a daily basis at Liverpool Hospital in southwest Sydney. And it’s my great pleasure now to welcome a nurse, a clinical nurse consultant, and also a psycho-oncology social worker. Can you introduce yourself and in a nutshell tell us what you do?
Teresa Simpson
Hi, everyone. My name is Teresa Simpson. I’m a psychosocial oncology social worker and I’ve worked in Liverpool Hospital since1998.
Julie McCrossin
And what do those words mean a psycho oncology social worker? What is it in plain English? What do you do?
Teresa Simpson
Well, it’s predominantly working with cancer patients and we are a team of psychosocial professionals, to provide for people who have, you know, psychological issue, or social issue, when they are in their cancer journey,
Julie McCrossin
And Theresa, I know that you’ve worked with head and neck cancer patients for many years and you have, I feel, a very deep feeling for this group of patients. Talk to me about the longer term impacts on patients and the sort of challenges, you know, that make your heart still crack a little bit even after all this time?
Teresa Simpson
I think, you know, as cancer treatment is getting better and better result and we no longer say cancer is a life-threatening disease, but more is chronic illness. And people surviving longer, or living longer with cancer. And with some of our head and neck cancer patients, because of the side effect of the treatment, because of how cancer is affecting their daily life, and to live a long term, it take effort.
You know, it takes effort to learn to live with side effects.
Julie McCrossin
Give me some examples of ones that you’ve noticed people find really tough?
Teresa Simpson
Well probably change of their appearance. Change of their body image because it is predominantly in this area and all these vital organs that is being affected. They might be dribbling a little bit. They might have dry mouth because of their medication or the radiation. They might have hearing problem. But there is that hidden disability or changes in their life that they have to continue to live day by day.
Having a cancer diagnosis is not all that negative because it actually, for some people, it opens a door for them to grow. Yeah to grow positively, you know,
Julie McCrossin
And Teresa, can I say, you yourself live with a significant health issue. So when you say that, you’re drawing partly, aren’t you, on your own experience? Do you mind just telling us what you live with and what insight that gives you into what some head and neck cancer patients go through.
Teresa Simpson
I have spinal cord trauma back in 2009 and operated on. And it’s amazing that I didn’t end up as a full paraplegic, but a partial paraplegic. So I live with a disability. I have gone through, you know, surgeries and physiotherapy, occupational therapy. I live with pain despite the surgery was successful.
So I know how our patients feel, as being the patient, you know, and also living with a chronic condition, or me, living with a physical disability. So I can understand that when the patient talking about that they’ve been sad. They could not communicate properly.
For me, being migrant, you know, and English is my second language. It is not my native language. So, I understand there are times that you feel really resentful what’s happening to you. But there are other times that what happened to me, or my disability, is open another door for me. Because since I find, after my surgery, I feel like that I really understand how some of our patients feel.
Julie McCrossin
In the stories of the patients we saw at the beginning of this video. People spoke very emotionally about grief and depression, and anger. And they talked about some of the things that they do. Routine . Peer support. Going to support groups. Getting up and doing something social. Wearing clothes and having a cup of coffee, or whatever.
Teresa Simpson
Yeah.
Julie McCrossin
In a nutshell, based on the many head and neck cancer patients that you’ve worked with over the years, can you give us three or four tips for people watching this and saying, you know, “What can I do to lift my spirits so that I can enjoy my life as best I can?”
Teresa Simpson
And I think probably the first tip is, thank you for the advanced health care we have that we are survive. We are surviving another day and we can continue to live on. And we can make choices of how we live with this chronic condition or disability
Julie McCrossin
What sort of choices?
Teresa Simpson
Positive choices. And I think there’s a balance. You know, life is not all about good things or happy things. You know, there are a lot of up or down and nobody can be positive at all times. And I think if having that balance, you know, rather than say to yourself that I’m fine. I’m doing well. This is good. But also acknowledge your loss and grief, you know.
And remember the achievement you make every day because it takes courage to live with a medical condition or a disability. Because sometimes it’s so draining, you know. Every few sentence you’re dribbling. You have to wipe your mouth, you know. But being brave and getting yourself out there is the best thing you know.
It’s like me using a walking stick. Me in a wheelchair that people will be staring at. Keep going. If people staring, then smile because usually they just curious, you know. But it takes guts and at the same time is very draining. So having that balance, you know, is important. So, if you feel you need to cry, then you cry, you know.
It took me three months to cry about my disability. And I not just having tears, I was bawling my eyes out and crying like baby for 15 minutes. And there are days that, you know, it’s particularly hard. And I’m sure for our head and neck cancer patient, you know. But if we don’t do something, that like depression, being sad, feeling that, “What’s the point to go on with my life, my life is gone,?” Then your life will be gone.
Julie McCrossin
So if you have, if you have those feelings of depression, why go on – because we know there is, for head and neck cancer patients, we do have a higher level of taking our own lives than other cancers – just in a nutshell, what is your advice? If you’ve got those very dark feelings? What should people do?
Teresa Simpson
Spit out. Expose. Go and ask for help. There’s heaps of information on the website. Go to your doctor. Go to your GP, you know, speak up or even call Cancer Council.
Julie McCrossin
13 11 20.
Teresa Simpson
That’s right, you know, and they will ask you a question. Their staff is very well trained and will refer you to the clinician that you can get the help.
Julie McCrossin
Look thank you so much Teresa. And I come now to our clinic nurse consultant Michelle, can you introduce yourself and tell us who you are and what you do?
Michelle Roach
Hi, Julie. I’m Michelle. I work at Liverpool Hospital in the cancer therapy centre and I’m obsessed with radiotherapy. I am [laughs]. So I’m a Clinical Nurse Consultant in radiotherapy. So all things radiotherapy, I’m your woman.
Julie McCrossin
And we’re going to have a whole video in this series, which is looking at innovations to help people who’ve experienced head and neck cancer, a whole program that’s just on radiation therapy. But today we’re focusing on managing distress. And I think I’d like to hear from you about the pre-treatment clinic you have and what you do there that particularly goes to the question of finding out if someone might need emotional support?
Michelle Roach
Okay, so we have a clinic at my place at Liverpool and it’s called the Head and Neck Pre-Treatment Clinic. No doctors allowed. So a patient has to meet a certain criteria and our care coordinators, or our cancer care coordinators, or our doctors might highlight that this person is appropriate for our Head and Neck Pre-Treatment Clinic.
And the people involved in that are a speech therapist, a dietician, a social worker, and me. If they’re a surgical patient, they’ll see our Head and Neck Clinical Nurse Consultant. And one of us will phone that patient, and invite them along to an appointment with us. And we make it quite clear that doctors are not involved in this appointment.
And it’s just the foundations of that clinic are to provide education and support for a patient before they start their treatment. And the hope of that is, that is, “forearmed is forewarned”. Education. The patient has an understanding, somewhat of an understanding, of what’s going to happen throughout their treatment.
Julie McCrossin
And isn’t that in a way the beginning of a relationship with the nursing and allied health team? Just as a patient myself seven years ago, the nurse in particular, she was almost like an air traffic controller. You know, that all the team were airplanes and she’d land the right plane for me when I needed it. So is it the beginning of a relationship?
Michelle Roach
That’s a beautiful way to put it. Because until we’ve spoken about that, and until you’ve said that, it actually is exactly what it is. Because if the patient had started their treatment, or they see a social worker like that, they’re in the treatment mode.
If we can do that beforehand, hopefully it gives the patient some confidence. Some education. And some understanding of what we’re there for and who they can contact if they’ve got a problem.
Julie McCrossin
And do you give them a telephone number?
Michelle Roach
Yep. So all of us give them our own contact numbers. So they may walk out of that appointment with four contact numbers. And I’m one of the last speakers to go in and meet – we do it individually – and I’m one of the last people that goes in. And I acknowledge that potentially that person and their support person may be quite overwhelmed.
So my whole role there is to get to know you and say, “Hey, listen, this is who I am”. And you get a feeling for what if they want to know a lot of information? Or, if they go, “You know what? Too much, I need to go”. Here, who are you gonna call? Call me.
I may not have every single answer for that person, I may not have been in there when the social worker was talking to them. But I know how to get in contact with these people. So I can traffic control.
Julie McCrossin
You’re a point of contact. The other message, I think that came through very strongly from some of those patients we saw at the beginning of this video, was a cry for peer support. A chance to be part of a support group. And we’ve already heard from Dr. Ben Britton, the clinical psychologist, that not everybody wants a group.
Some people prefer their privacy. But at Liverpool Hospital over about seven or eight years, for quite a bit of the time, there has been a support group. Just again, in a nutshell, tell us what sort of things do you do at the support group and how do you think it helps people?
Michelle Roach
So the Head and Neck Support Group was already established when I came to work at Liverpool about six years ago. And the philosophy of the support group is just to be there for each other. So any patient, whether they have just been diagnosed, during their treatment, or they’re five years after treatment, they come along. We have it at the same time every month. And we have some people working behind the scenes that send out 300 letters every couple of months.
It’s amazing what happens behind the scenes. And we have education sessions on the new advances in treatment. And sometimes I say to my patients, you’ve passed your treatment. But we still have these radiotherapy and they go, we just want to know what’s going on. Like, it’s really interesting.
So, patients, no matter what stage they are along their journey, their treatment, their survivorship phase. They come. They touch base with each other. One of our patients thinks he’s a chef. He’ll make food.
So we have the formal session of the day where it’s education. We have an invited speaker. And then we have the social part where the patients just sit around. And one of the speakers earlier today mention that tips and tricks. We’ve actually produced a “tips and tricks” based on the feedback from our group. What we got them through.
Julie McCrossin
So sort of advice from fellow patients? Look, thank you so much for that and I have attended that support group as a speaker. And I was very moved to be with my peers. There is something about being with people who’ve been through the same challenge, difficulties. It’s very, very special. It’s very, very comforting.
Julie McCrossin
But just our last thing. One of your passions, as I understand it, is the training of nurses to particularly understand neck cancer patients and to have specialist head and neck cancer nurses. And I think we’re aware that there are specialist breast cancer nurses. I think the gentleman who’ve had prostate cancer, we’ve got now well over 40 prostate cancer nurses nationally.
What’s your dream? If I came back in five years-time? What’s the dream for you with specialist head and neck cancer nurses?
Michelle Roach
It is my dream to have specialist head and neck cancer nurses. Our speakers this morning, and I think Ben said, “It’s so visible.” If somebody has had a laryngectomy and they breathing through a hole in the neck, you can’t hide that. If somebody has a big graft over their face, you can’t hide that.
A lot of other cancer sites you can hide it and you can walk down the street and nobody knows. Our head and neck cancer population, particularly during their treatment and just after, it’s so obvious. Eating and drinking is so social. Come to my place and the first thing I say is, “What do you want to drink?” Some of these people can’t eat and drink so they’re relying on a peg tube.
Julie McCrossin
Just explain a peg tube because it hasn’t been mentioned yet.
Michelle Roach
A tube which goes into your belly to help you feed because of your reactions or your treatment. You can, or your surgery, you can’t swallow food at the moment. Mostly it will improve. Sometimes people have feeding tubes for the rest of their life. But eating and drink thinking and talking at such a social theme.
And for a head and neck cancer patient that is so impacted. I used to say you can pick a head and neck cancer patient a mile off, because they’ll always have a bottle of water. If we’re there, there saliva is an issue. So to have head and neck cancer nurses that are trained in that, that can, not walk with the patient, that that I don’t mean that to be contrite, but to educate and support and tips and tricks.
And understand that, I believe personally that the head and neck population, they’re extremely complex. Lots of issues. Hence why we have a head neck support group and why you’re here doing everything.
Julie McCrossin
Thank you so much, Michelle, and thank you so much Teresa, It’s been an absolute pleasure to hear about your work at Liverpool Hospital.
Teresa Simpson
Thank you.
Michelle Roach
Thank you
Julie McCrossin
And I want to thank you too, for joining us to watch this video on managing distress with head and neck cancer patients. It’s one of a series on innovations in care for both survival and quality of life.
It’s hosted by St Vincent’s Hospital Sydney and The Kinghorn Cancer Centre. And remember, if you’ve got any questions and you’re in Australia, ring Cancer Council Information and Support line 13 11 20.
Also the Beyond Five website, https://www.beyondfive.org.au. And we’ll put other contact points, including for New Zealand, on whatever site you’re watching this video. And thank you very much.
Transcript ends