Episode 2: What Your Cancer Care Isn’t Giving You (And Where to Find It)

Katherine Froggatt (00:00)

Before we do anything else, I just want to start today by saying thank you. Thank you for showing up today for pressing play. For that small thing that you probably don't even know what motivated you to press play today. But whether you're here because you are going through a breast cancer diagnosis yourself or someone that you love is going through this right now. I just want to say

This is important that you've showed up for yourself, for somebody else, and that you want to understand more about what's going on right now. And this matters that you're here. So thank

Have you ever sat in a doctor's office and heard the words that changed everything? And then been handed a a pamphlet or maybe some congratulations if you're finished with treatments and sent home. The medical system can treat cancer.

But it isn't always set up to treat the whole person. And that gap between clinical care and genuine human support has real consequences for women to heal. Today we're talking about that gap. On how we can help support women through this stage, what needs to be done, and how and when what will actually help. So right now I just would love to invite you

From whatever you're going to take from today, be it awareness, connection, the deep knowing that things can and can do, will get better. Education changes everything. When women understand what's happening in their bodies, we we in treatment or in recovery, we stop feeling like passengers and start feeling like participants. And when we find their people, women who truly get it.

Barbara (02:00)

you

Katherine Froggatt (02:01)

Something

shifts that no medical intervention alone can create. That is exactly why Breastwise Unafraid exists, to bring you the knowledge, the voices, and the connections that make this journey feel less isolating and more possible. You found us for a reason. So let's get into it. Today's conversation is one that I have genuinely been looking forward to. We're going to talk about what community supports.

really looks like after a breast cancer diagnosis where the care system has gaps. What Aratika Cancer Trust is doing about it? The role of art therapy in healing and some hardworn personal wisdom from someone who has been on both sides of this world. So it brings me great pleasure to bring on my interview guest today. She began as a scientist

a Bachelor of Science in Cell Biology from the University of Auckland, where she won both prizes in cell biology and botany. She went on to medicine, specialized in radiology, and trained under Professor Leslo Tebba, one of the world's foremost experts in mammography, completing three levels of training with him. For over fifteen years she served as a clinical director of

Barbara (03:04)

you

Thank

Katherine Froggatt (03:20)

Of breast screen Aotearoa in the Bay of Plenty and she has been a consultant radiologist in Rotorua Hospital since 1999 and that's where I was treated. She teaches at the University of Auckland Medical School and examines for the Royal Australasian College of Radiologists as well. So decades of being on the front line of breast health in New Zealand and she has also walked the path of a patient. She knows this from both sides and that makes everything.

She has to say today, extraordinary. Barbara, welcome. I am so immensely happy you're here.

Barbara (03:55)

Thank you very, very much. It's a very, very kind introduction. Thank you. Thank you.

Katherine Froggatt (04:01)

How are you today, Barbara? I like to start by asking you.

Barbara (04:04)

⁓

well, it's a beautiful day here in Rotorua. The lake is sparkling and, and it's that lovely time of the year where it's actually autumn and, you do hear, it's just a quietening down of the garden. And I think it's a quietening down of our life. And, ⁓ yeah, I, we're also very excited because on Monday,

After some trepidation with flights, we are flying to Germany where we have son and a lovely daughter-in-law and we've now become grandparents and they are over there because my daughter-in-law is an opera singer. She's a soprano and she's employed very much by German opera companies. So we have to do the flight to meet our grandson. So it's a time of ⁓

Katherine Froggatt (04:33)

Mm

Barbara (04:56)

As I say, the earth is quietening down in the garden and we're off on an adventure. Yes.

Katherine Froggatt (04:59)

Yeah.

is so special. And I'm hearing connections and I want to share something before we dive in. This this connection this conversation has been a dream of mine since my own diagnosis, Barbara. and honestly, since we first met at my first retreat back in must be 2017 in Taupo. that was life-changing for me. And I've kept our friendship very close to my heart ever since. So this moment right here.

Feels really special for me. So thank you for being here with me. I just want to start, if I may, by asking you. I mean, you know, you've gone through so much and you've seen both sides. And I believe there was a real passion and desire ⁓ of setting up what would be community support for women after diagnosis. So tell me when when a woman receives a diagnosis from a medical system, once they are activated.

to the appointments, the scans, the treatment plans and what about the human side of those early weeks? how did community support come through and and and tell me a little bit more about that experience for you?

Barbara (06:02)

Well, the reality is that most of our participants at retreats for the Aratika Cancer Trust are very, very late. So you are asking that ideally in that early phase, some of the skills and teaching and techniques could be available. But the reality is that

because I think you're alluding to the shock and the complete bewilderment, most people will say that everything was a bit of a blur, that they felt that they were on a sort of a process. My own sister also had breast cancer as I have had. So I think we, and we have had quite different viewpoints. So what I'm alluding to there is

It's very individual whether people are prepared to even step out and maybe share their experiences and come to an Aretika Cancer Trust retreat. Ideally, it should be, not should, that's a stronger word, it would be encouraged that you come quite early so you start to get some tools to cope with the inevitable anxiety, the lack of sleeping, the body dysmorphism because you're

Katherine Froggatt (07:16)

Yeah.

Barbara (07:19)

body never feels the same. One of the big things that we hear with people coming is how lonely it is after a cancer diagnosis. It is a very lonely time. You may have a very loving husband or partner. You may have a loving family, but they're often so upset by the implications even that when you have your

Katherine Froggatt (07:41)

Mm.

Barbara (07:46)

dark moments or your anxiety, you don't share it because if you do, you upset your partner or your mother. And that's the lonely part. That's the, you know, and that's one of the things we notice when we have a retreat is people find that they're not alone. That actually what they thought was only them and that it's actually a shared experience. And that's one of the biggest

Katherine Froggatt (07:58)

Mm.

Barbara (08:13)

is people build up their own networks and through meeting other, often if it's breast cancer, other women, but we have opened the trust to all cancers after initially only focusing because of my own involvement with breast cancer, but we've realized that there are many other cancers that have similar paths of being very much feeling that they were the only ones

Katherine Froggatt (08:17)

Mm.

Barbara (08:38)

experiencing. And it can be all the problems of a hospital system, which is good at short term solutions, but not long term. And again, I allude to the fact that we get people very late. It's at a point often where they perceive that nothing more can be done. And that is, of course, a perception.

Katherine Froggatt (08:51)

Mm.

Barbara (09:03)

But it might be a reality that they have been told by an oncologist that no further treatment is available or that, and they are then searching and that's where we are approached. And it is still a little bit, it would be, I think, helpful to have had some of the same skills taught a lot earlier because of the relief.

of finding out that you're not on your own, that you're just not on your own.

Katherine Froggatt (09:30)

Yeah. I have to agree with what you just shared. It's so it feels like even though it's not intentional that we isolate ourselves, but it is a very isolating feeling and experience where nobody else have walked the path of a diagnosis as confronting as cancer and that somebody, even though my husband does absolutely love and would drop the world for me, but

I still felt that need to relate with somebody else who have had that harrowing experience of the diagnosis and facing the mortality up front. ⁓ and I needed all I needed was that confidence and hope that I can get through this, but only through the experience of somebody else who can facilitate that inspiring connection for me. And I'm so with you on that. ⁓ and so interesting that you said this, Barbara, that ⁓

Barbara (09:58)

Hmm.

Hmm.

Yeah, yeah.

Katherine Froggatt (10:21)

People do not feel inclusive in a way that when they go into the hospital and they've been told there's nothing more. But is that really true? I mean that is in itself a a gap in the system. There are things that we can do in and around treatments.

Barbara (10:35)

But I think certainly when I went through my own cancer journey, which also didn't go very straightforward, so despite you could have all the knowledge in the world, and I did have quite a lot of knowledge, there were hiccups, technically there were mistakes, but we won't go there. And I did spend time talking to my oncologist,

sort second and third opinion. And they were actually quite open to some of the suggestions because by this stage, I founded the Aratika Cancer Trust long before my diagnosis. It was prompted by observing through diagnosing breast cancer and seeing the women going through treatment and meeting them often at the hospital for scans because I'm a radiologist. So I read CT

MRI scans and they would then confide in me that they were doing other things and they would ask my opinion about so-called alternative and I find that that is really unfortunate because alternative sounds like it's an alternative to the treatment that is suggested and that makes it like there's just two options

Katherine Froggatt (11:33)

Mm.

Yes.

Barbara (11:49)

And I always figured just from what I had heard and read that I conducted a, a small survey that 80 % of all the women going through breast cancer treatment were doing alternative. And when you looked into it, a lot of it was very shonky and exploitative, you know, making money through the, you know, grasping at straws and families raising huge sums of money to go.

even overseas, and I have to be careful because it's not without some validity, but a lot of it struck me as outright charlatan stuff. And all I would say is, I don't have training in that. And so I started to read more and there are clearly

whole lot of mind body work that has been shown in some cancers to have very profound and there are books and there are groups and it sort of it tends to be a lot of mind body work a lot of meditation nutrition movement we call it movement because it's not so much exercise fitness but about moving because being chi gong

Katherine Froggatt (12:59)

Yes.

Barbara (13:04)

⁓ And then art and music therapy and those were the ones that sort of kept coming up in my reading and that was really actually the instigator was to hope that we could provide a complementary A complementary Toolkit I used to call it a toolkit

and give people the opportunity to experience some of these. Like if you've never meditated, and I certainly didn't understand meditation at that stage unless you really start to get some experience. And I don't want to pretend because there are people who are serious, serious, serious meditate. But even so what I learned from people who meditate regularly,

is a lot of interesting science on what it does do to our telomeres and, you know, health. But my personal block, if you like, was that I saw it as you had to become very religious and, you know, become some sort of, and I found that a block because I didn't want to believe in some religious experience. And then I really learned

Katherine Froggatt (13:59)

Mm.

Mm.

Barbara (14:17)

that it wasn't necessary, but it was a technique that you have to practice so that you are calming the mind. And that's just one example. And the nutrition is an example. I certainly found that Qigong helped me hugely in my cancer journey because you get so, especially during chemo, you barely get from your bed to the toilet. With Qigong ⁓

Katherine Froggatt (14:25)

Yes.

Barbara (14:41)

I just put on a little iPad, 15 minutes, I think it's called the eight tapestries. They're very old movements that the monks have been doing for 2000 years. Beautiful movement, breathing, stretching. And none of it is going to cure your cancer, but when you are lying there, it all gives you another bit of,

the life force, the life force we have within us. And that gets back to, I suppose, in the trust that some aspects resonate with people and others don't at all. And we've had one or two people who've walked out, very rarely, by the way, very rarely, but they've walked out when they realize that they have, for example, eat a plant-based diet and they have their meat.

Katherine Froggatt (15:08)

Yes,

Mm.

Barbara (15:31)

You it's very rare, most people have never even encountered some of these options. I mean, one of the ones that we explored, which sounds as laughing yoga. ⁓ And, you know, it is an amazing, uplifting experience. You fake it. So it says yoga,

Katherine Froggatt (15:45)

Yes.

Yeah.

Barbara (15:54)

with a form of pretending, I suppose, that you're laughing, you know, how you use your diaphragm and your abdomen to, but you will find that most of the women in that retreat, they haven't been laughing because there's nothing funny about breast cancer. And so they've even not laughed for maybe a year. And just the laughter, which then is a bit

Katherine Froggatt (16:11)

Mm.

Barbara (16:18)

contagious because everyone in the room is starting to laugh at each other because we're all feeling quite silly laughing. It's a really good experience. So I've always thought it isn't harmful to try different options, but getting back to my own journey, when I did mention these two oncologists, at least the ones that I dealt with, they were sympathetic. Nobody said,

Katherine Froggatt (16:21)

Yes.

Silly yeah.

Mm.

Barbara (16:45)

that's bullshit. I don't believe it. Most of them say that sounds really good. It's the sort of stuff we should be doing, Barbara. It's well documented, but we haven't got the time. That was always the answer. We don't have the time. We've got always, you know, to see new patients and, you know, follow up. And so I remember one in particular who is quite, you know, senior.

Katherine Froggatt (16:52)

Mm.

Barbara (17:09)

emailing me later on articles in the oncology literature that sort of supported some of these ideas like I think you're on the right track but I haven't got time to do this.

Katherine Froggatt (17:20)

it's a a reality of what we're facing at the moment, Barbara, and ⁓ the stats are not improving in terms of the diagnosis, and that's probably why the oncologists, even though they have the best of hearts and interests, they just haven't got the capacity. I if I may be honest, I think I know several oncologists who they themselves are burnt out.

I think the dream here is and what I'm hearing from you and personally even from me, a patient, a recipient of the Aratika Cancer Trust retreats and what you've shared with me, I found the most profound improvement in myself was all of the energy and somatic work that I've done. it's been you know, there is there is a lot that we can do obviously to change our diet and nutrition that aligns with the family. You know, I have two teenagers, so I've had to adapt over time.

Barbara (17:58)

Mm-hmm.

Katherine Froggatt (18:09)

and ⁓ and merit to a chef, right? So, you know, it's it's kind of like where's the balance. But I feel like the most profound change for me was really understanding how my body is feeling within myself from a ⁓ from a spirit, not religiously, but from a spirit versus physiological alignment, you know, and I found that I've learned that through the years, and I will never forget.

Barbara (18:28)

Mm-mm. Mm. Mm.

Katherine Froggatt (18:35)

Liz Mulushnick's first meditation session with me and we were sitting in a group and I still remember I think it was ⁓ the location in because I've been twice to the retreats in two different years. I loved it so much. And I think one it was in ⁓ Rotorua for one of them and we were sitting in a room and we were all like kind of wrapped up in our blankets and I was sitting there and she said, You are not supposed to stop thinking. You're supposed to just allow those thoughts to come and go.

Barbara (18:46)

Yeah.

Ha

Katherine Froggatt (19:03)

And I think that moment was a light bulb moment for me because it changes my perspective towards what meditation is really, mindfulness in the practice of it. So that was fantastic It was a huge change and that embarked me onwards into doing all of the other somatic work, which has really elevated where I am. And I have you guys to thank for me getting to ten years, Barbara.

Barbara (19:24)

Yeah, I am. It's very, kind that you say that I do attend the retreats now more in a supportive role because it's 15 years since I started and you know it at the very beginning it was people. Liz was there as our very first because we were trying to follow very strictly the Gala program from Melbourne and the reason for that was that I felt.

Katherine Froggatt (19:46)

Yes.

Barbara (19:49)

none of us had any experience in New Zealand to have facilitators with experience and whilst individuals might be well meaning, what was it that we could be potentially harming people? I mean, I remember the first one at Tauhara with some of the original trustees that are still on the trust now, June Grant, Wendy Lewis,

later on others like Doreen and Susie, Susie joined us actually not quite soon after. they were all part of it. Brita, Britanowski was in the first. And Brita was particularly clear about Gawla and Liz had worked with Gawla. We over years evolved and we're quite comfortable to say that we developed for New Zealand

Katherine Froggatt (20:23)

Yes.

Barbara (20:39)

focused because we have a lot more Māori population. We've incorporated a lot more of ⁓ maybe some of the spiritual aspects. And they are so universal anyway. don't strictly, I feel, Māori, but we've learned and we've incorporated. And so we got our own program not being so much a Guala program, but it was based on Guala.

Katherine Froggatt (20:51)

Mm.

Barbara (21:03)

And where am I going with this? Yeah, so the original retreats were very, well, hugely scary. I remember talking to Britta, who's also a doctor. We went through all the medical histories of the participants, worried about whether we were going to, you know, what responsibility we were taking for their health and whether or not people were going to not sue, that's too strong a word, but would say,

Katherine Froggatt (21:11)

Mm.

Barbara (21:31)

You promised me something. It hasn't worked. What are you guys doing? What is your credibility? Some horrible journalist article. And it's never happened. It's never happened. And I think we have tried to stick to those tools and give people an opportunity. And it's, it's usually been like you saying,

Katherine Froggatt (21:33)

Yeah.

Barbara (21:59)

very encouraging things. And also anyone who like us is like, yeah, so in the beginning I was right there. I was doing all the juicing. I was sleeping at Tauhara, you know, running the program with it. Now I tend to just come and I make some of the food because we try to have, you know, very good plant-based food. I'll already say I do not have an industrial kitchen. So if you want to, I just make it here at home.

Katherine Froggatt (22:23)

Mm-hmm.

Barbara (22:25)

and I bring it to the retreat and I do ⁓ art and craft sessions. What I was going to mention is every time I hear very similar stories at the end that people came, they were pretty withdrawn, pretty closed down, not just pale, that's understandable with treatment, but that very empty eyes, very withdrawn, very shut down. And if you see them on the last day,

Katherine Froggatt (22:26)

Yeah.

Mm.

Barbara (22:54)

when people will do another, they are sparkling. Their eyes are sparkling and they have energy. And I always go away thinking, it's okay, we're doing good. Even though I question and question and question myself at times because it could be flipped on its head and like, what's the data?

Yeah, we haven't got a big scientific journal to prove but your comments parallel. And the other thing I should say is, it is only for the people who jump over their shadow and will come. There are quite a number of people that I know through contact. And I think they really benefit and I may mention it quite gently. then they're not going to. It's

Katherine Froggatt (23:41)

Yeah.

Barbara (23:44)

I think roughly 10 % of people who've had the cancer will do that step of maybe almost asking for help, admitting that they want to know, rather than, I can do this by denial, I can do this by being strong, I can do this by just putting my head down. It doesn't always work.

Katherine Froggatt (24:07)

Mm.

Barbara, this is a very pinnacle point of our conversation because I feel that you and I agree that there is a a real gap. And I think you've just highlighted the fact that the people who are coming to the retreats are late in their diagnosis. How do we actually facilitate that? How can we push that forward for people to just go, hey, maybe that's a possibility?

Barbara (24:26)

Right. Right.

I've had an ideal dream right from the very first retreat and I keep mentioning it, which is that after the diagnosis there should be almost the equivalent of a bus ticket, which doesn't exist anymore because it's all on iPhones, but the idea that you used to clip something and the thing was that there would be a free massage and then there would be maybe a

if it's going to be the chemo maybe for your wig or that you had to your wig appointment and then you had to have your, I don't know, your eyebrows. Yeah, But sort of just getting into the practice and that each one of it had, therefore there was an appointment and the facilities are dispersed around New Zealand. whichever Bay of Plenty or Northland, it would be worked out.

Katherine Froggatt (25:10)

Prosthes bra.

Barbara (25:27)

⁓ So that you kind of got your bus ticket and you worked your way along and then quite early on on the bus ticket prescribed by your surgeon or your oncologist. This is a big buy-in because as you're doing the, well, I don't know what that's all about. And, you know, it sounds like a lot of bullshit if you want to do it, but if they were part of the process, yes, I recommend that you go along to the Aritika Cancer Trust or

Katherine Froggatt (25:39)

Yes.

Barbara (25:54)

if we have spread. By the way, most of our retreat now is not even local because we are providing about the only one it seems left in New Zealand because there used to be one in Wanaka and that no longer takes place. And there was one in Nelson and that no longer takes place. And there was one in the Coromandel and that doesn't. So we are left and we take, although it's always a bit difficult with funding because when we go along, it's our local

Katherine Froggatt (26:07)

Mm.

Barbara (26:21)

like Rotary or other funding providers and they want to know that it's local people and we always do try to prioritize, but we're not going to say no. We're getting so many from Auckland, we're getting from the South Island, they come up, Waiarapa. So it just shows that there's a need. But getting back to my bus ticket idea is that there would be a, oh, and I have to have this one hour with a...

nutritionist and then a one hour meditation and one hour and just literally be guided that it is part it is and then you can choose not to go and do those things but that it is an automatic my surgeon has recommended it my oncologist has recommended yes i'm on my way clicking my bus ticket and then finding that some of it resonates and

Katherine Froggatt (27:13)

Yes.

Barbara (27:13)

That's the resonating. I want to do more of this. Yes, I or else. Well, I did it. I don't know what they're on about. It's not me and okay, but there was something else, but that's not what's happening. And unfortunately, I have a good working relate, in fact, very good working relationship at the hospital. And yet I hear time and time again that this is seen as pretty woo woo. This, this

alternative because the word, you know, we can't seem to get rid of the word alternative. I know how many times do I say integrative, complementary, and there's no, I've never experienced personally any criticism, but it isn't embraced.

Katherine Froggatt (27:55)

It's frustrating. It's frustrating even for me to hear that, even for me to have walked that journey six months in the folder of Dr. Anupan Modi, beautiful man. I absolutely embrace him. and when he discharged me, I was like, ⁓ what now? Like, you know. But I've had to figure out the six years myself. And and there wasn't

Much guidance apart from literally Aratika cancer trust retreats that gave me the few days of experience of how my body can feel a different way if I change a different path. that's why I feel sometimes there is a conflict between the clinical need for what we do, ⁓ you know, and and versus what we can substantiate for them to have a buy-in. So it's a big buy-in.

Barbara (28:32)

Mm. Mm.

Katherine Froggatt (28:40)

And I've even sort of looked into looking at a retrospective audit of ⁓ maybe 20 breast cancer ⁓ patients who might be able to substantiate some of their life experience. But this is a long research, it's a long audit of women who have had changes to their lifestyle and what benefits and I will be part of that audit. So it feels like there might be more work for us to do, Barbara, together, you know, to try and get that clinical results and data for people to buy into.

Barbara (29:08)

Well, I think you're right because you mentioned one of my colleagues here and you know, they are kind and they're nice and this is what I mean. ⁓ It's not like that I am working with a brick wall, but it doesn't flow on it. And they just do what they have because there's another patient and they, know, so they, and it's, know, and, the oncology is pretty swamped.

There's always new diagnoses and people do present late. and then there's a shift down as well in the time that I've been medically to much younger people getting diagnosed. So what I was also going to mention is the goals and objective of a 75-year-old woman with breast cancer in no way

less upsetting and disruptive. But her goals are going to be different from a 35 year old woman or 45 year old woman with very young children, all with breast cancer. Very, very, different focus. And that comes across in the retreat we've had more and more young women with stage four breast cancer who have children that haven't even got to school.

You know, their focus is very, different. And I don't have the answer as to why we've had this increasing downward trend of younger and younger diagnosis. ⁓ But it is, it's there with bowel cancer. you'll see it being discussed that there are younger and younger people with cancer. You know, is it dietary? Is it environmental?

Katherine Froggatt (30:41)

Yes.

Barbara (30:45)

I'm not able to answer any of that except to say that they are part of our participants and it's a very challenging group of participants. You feel very taken by their story.

Katherine Froggatt (31:04)

Yeah. I was one of them diagnosed at thirty nine, two young kids, so my oldest was three. ⁓ and it's difficult because, we've got so many other balls that we're juggling and and I find that it's to be increasingly more ⁓ in a vulnerable position with our motility because we've got two dependents for us, you know. And more often than not, we are also supporting the husband and the entire household and

Uplifting everybody else whilst me, while struggling my career, the fear of going back to work, what does that look like for me? And so I guess that that is the reason why I'm deeply passionate about opening up these conversations because I think the awareness of what they name as alternative should be a non-negotiable part of our lifestyle. It is part of lifestyle medicine, and I find that the more we discuss and open up the conversation to

things that are a little bit more joyful to do that we might be able to implement into our lifestyle. So I want to talk about art because I know you brought it up earlier and I know we're so conscious of time, Barbara. But ⁓ I just really want ⁓ you to share. I mean tell me about the art therapy because I r I still got the the the little Christmas wreath that I made with you guys in the art shop and I and I put it up in a separate box every single year and a

Barbara (32:11)

Thank

Katherine Froggatt (32:20)

Christmas is on my door and then I put it in a separate box. It's something I treasure and it's something that I feel pride in because I never knew I was artful, I never knew I was creative until I sat at that table in your house and just doing the art together. So tell me what got you interested in this part of cancer recovery.

Barbara (32:27)

Okay.

Okay.

Well, I've always been interested in arts and crafts as it's called. So it wasn't in some way. It's just burbled along. I've done lots and lots of arts and crafts and I've done it with friends and this, know, celebrating Easter in the European way, blowing out the eggs and, you know, all the dying.

lot of Christmas and a lot of embroidery. But it was very important, which is why I feel very passionate, is that after my diagnosis and after eventually coming out the other end, because it was over a year, because I got very unwell during one of my chemo phases when I had...

zero white cells, just a very normal skin infection got into my bloodstream and I was then very unwell. it's what they call sepsis and it goes right through your body and it goes into your brain. And I was on a lot of very aggressive drugs just to try and get better. And then

Eventually, I'd only gone for a spacer because I didn't have any interest yet in all the other stuff and then everything got taken out and then the radiotherapy got everything. So I ended up very, unhappy. And I went back to work and in the eyes of everyone, I was fine and I was back. I mean, I had almost no hair, but I wore a wig.

But in my own heart, I felt I was a fraud. I felt, I just thought I was acting. I was like an actress. I knew what they wanted, what words they wanted, but I really lost a lot of my own inner. And one of the things that have been really deeply, for me, we get to the art, is that I knew in my original...

Diagnosed the I had a number of biopsies done because I always knew that this was a cancer I saw it right away, but the biopsies kept as normal and So it's a whole thing about questioning biopsies, which I don't want to get into but Yeah, but what happened was that I knew that there were cells Cancer cells that had been in a very widespread area because I actually had four

Katherine Froggatt (34:40)

Yeah. That'll be another conversation.

Barbara (34:54)

breast cancers. So I had this thing about cancer cells and I started to paint them. And I then would paint them, this is all late at night, and then I would cover them all with white paint to make it look as if it was gone. And then I would scratch it to find them again. And in doing so, I thought this is actually looking quite nice. my husband for help, who's an artist that I wanted

I wanted to somehow paint the cancer cells but then nuke them and I thought this was like meditation. I was going to see them and then I was going to completely wipe them out and so he helped me by finding something called alcohol inks. So these are bright colors called alcohol inks and you can draw beautifully with them but then if you use alcohol you can you can completely wipe it.

Katherine Froggatt (35:33)

Mm.

Barbara (35:43)

And I really got into this and I would go up at 11 o'clock at night when he would go to bed and I would create these really very interesting paintings. And as a joke, I might say to people, well, maybe it was the alcohol fumes that were getting me happy because you do inhale a bit of the, it's just ink. But I would feel a lot calmer

Katherine Froggatt (36:02)

Yeah.

Barbara (36:06)

and a little bit more joyful after my painting sessions. I just did because I was seeing it, visualizing it, and then nuking it, and then visualizing it. And so I started to read about it, and there is a lot of data on, and a lot of data on, it was actually in the recent listener about two weeks ago about art therapy. You know, people who,

are in depression, people who are struggling with divorce. So it's not just, what happens is you're ruminating and your brain is just going round and round and round, just can't get off that. And so something about this creativity where you're probably refocusing your mind on your hands and trying to make something

Katherine Froggatt (36:37)

Yeah.

Mm.

Barbara (36:58)

read as a wreath, those thoughts just can't keep doing this because you're focusing with your hands. And it briefly, I think calms the mind, plus you get a joy out of what your hands have done. And it's a little bit like writing a diary because you can see some pages of your work. And then some of it I will put away because it reminds me of more sad times and then some of it I'll pull out.

And so then I got the courage to offer it to women going through cancer here at home. And we usually just use tiles so that it's that because then they can and it's very, much about you'll find that some women will just use, you know, red blood, you know, they're just visualizing what they're feeling. And then they'll start wiping that away. And then gradually,

maybe some yellow comes in because the sun is shining or they might put green in because they're going to grow something. And it really happens. I never ever comment. One lady I remember put tape around because she was going to contain her cancer by the tape and then ripped it off and then

She got rid of it again. And I was amazed by this because it was really doing what the books are talking about. It's a visual way of connecting. And I ran one for the trust for the Aoteke. We were actually out at Lake Okitaena for one of the and I ran it outside and just as they're doing it. So to keep them really, really quiet because I tried to totally discourage talk.

Katherine Froggatt (38:25)

Mm.

Barbara (38:34)

because we talk all the time. But this is not talking. This is really just what you're feeling, what your eyes and what you're painting. And so I bring this, I'm looking up, but I've got this Canadian flute. It's used by North American Indian. And it's a pentatonic scale. It's just very quiet. And I started just quietly playing it because I was saying, you know, this just, just

Katherine Froggatt (38:36)

Yes.

Barbara (39:01)

focus on where the music takes you. And we were outside and I know this sounds so schmaltzy and the two of started answering. So I was playing my flute. At first I thought it was a fluke, then I practiced and he just talked and everybody was enjoying it. So there's a lot more to it, but there is a whole lot of work with music therapy, but I am not qualified. ⁓ That is a training.

Katherine Froggatt (39:12)

wonderful.

Barbara (39:30)

both music and art are both well recognized for mental health. And I again would highly recommend it. Highly recommend.

Katherine Froggatt (39:39)

Yeah.

Yeah, and it's almost like we gotta get ourselves out of our own head and just try it because that's exactly where I was. I was at the retreat, I had no choice but to participate, and I had to get out of my own head and go, I can do this. And if we give us ourselves a chance to just try it with no expectations and no judgment about being perfect, about

Barbara (39:45)

Mm-hmm.

Mm.

Yeah, yeah, yeah.

Katherine Froggatt (40:06)

having to create something wonderful or an artist impression. We're not, we're just it's a form of expression. And that is exactly what you guys have achieved for the people who are the participants of the retreat. It it's a memorabilia that I've kept for the rest of my life. So I just want to say let's get out of our own head for anyone who's listening who thinks I'm not creative or I'm not artistic or just try it. Just try it for size. You may not like it but hey

Is worth doing it.

Barbara (40:35)

And I really emphasize it's not about copying the still life and having a perfect vase with flowers. This is not it. It is. It's really just how you feel at that moment. And then you get the joy, particularly when you see the colors flowing and then you can remove them and then get rid of it, which is interesting.

but you don't have alcohol inks. can use, you can use watercolors. You can use acrylics. you know, you can doodle, do zen doodling. I did that all whilst I was having my chemo. I used to bring in my zen, zen doodling is where you, well, there's lots of ways of doing it, but you, you, you usually use very small sheets of paper. So it's not big and you can start having some areas that you

Katherine Froggatt (41:01)

So

Barbara (41:27)

And then you just start doodling into the areas and you just start doodling. And again, it's about, I'm not noticing that my arm is getting all this poison, you know, I'm just focusing on my doodles. And ⁓ yeah, I did all that because I'd learned about it. How much does it help? Well, I still had and I continue to have sometimes, because the radiation in my case left a lot of

Katherine Froggatt (41:40)

Yeah.

Barbara (41:53)

pain, restrictions, scar tissue, having to have all the scar cut out because I ended up not being able to breathe on the side because of the intercostal muscle. But that was my story. It's not everybody's story. yeah, I mean, all I'm saying is you're never quite the same. always, you know, you in my case, you're always aware of your body being different.

Katherine Froggatt (42:07)

Mm.

Barbara (42:17)

And then you have to just, as I said today again, you go and go, what an amazing day and we are well and we can enjoy it. was it over diagnosis? Was it over treatment? All this I hear medically. Well, everybody has a different journey.

Katherine Froggatt (42:33)

I'm so with you on that, Barbara. And I wanted to just really acknowledge, what you do and how you are elevating from your own experience and even developing whatever that you were trying to develop to create for other people, other women, even before your own diagnosis. I really just want to acknowledge the work that you do. And if we can go back and sit with yourself, if there is one thing from your own experience.

⁓ what would you say to yourself and what would you say to another woman who's being diagnosed today?

Barbara (43:01)

Wow, that's a hard one. Well, the first thing I would say is don't be in a big rush from hearing the news and feeling that you need the surgery tomorrow because in fact, you've probably had this cancer for quite a while. And why I mean like that is it's a good time to look for.

and maybe get a second opinion and just look around so that when you make a decision to go for a mastectomy or a wide local excision or having a tram flap or not, you've actually thought it through. Because I've certainly noticed that a lot of people, women, from the moment they get told, it's got to come tomorrow. And it actually doesn't.

you're going to the same. It's just you need to know what is your, what are your options? Because there are about 12 different types of breast cancers, which most people don't know. And they behave very differently. And when I lecture, I used to say, you know, if you think of a dog, what sort of dog are you thinking of? You know, and you might be thinking of a very big

golden retriever that just lolls around. It's pretty big, but it's never going to bite anyone. I mean, I'm not a big dog person, but I know that they're very gentle and whatever. And then you can have little tiny ones that are all yappy and bite everybody. so size isn't the thing sometimes. You some big breast cancers are not as aggressive as little, little ones.

And they're all called dogs and they're all called breast cancers, but they do behave so differently. So you need to know what is your breast cancer and you know, even the, the, the genetics is coming into it and the, yeah, the whole gene stuff, which will happen probably after my lifetime, you know, is going to get more and more and more specific, but that's saying what are your

or happened to the lady next, that's the other thing is that people love telling you stories once they know you've got cancer. And whatever happened to them or their mother or their grandmother, particularly their grandmother, when things were pretty aggressive, is not your It's not your story. Your story is your story and it needs to be

Katherine Froggatt (45:11)

Yes.

Barbara (45:28)

based on that whole myriad of size, grade, tubular, non-tubular, DSCIS versus, know, it's all very, you know, lymph node involvement, no lymph, all that has to be packaged. And, sometimes it's overwhelming as you said, so you need someone with you, you need to have a pen and paper, you need to write down what's being said, you need to ask questions maybe two or three times. And most people,

Katherine Froggatt (45:54)

Yeah.

Barbara (45:55)

will be understanding. You the breast nurse should be able to guide you back to talking to the surgeon if you still are not sure. So that when you make the decision, you've made the decision. And then get your support group. And it's not the people you thought would be your support group. You'll find people will quickly fade away who you thought were your friends. It's either for various reasons.

Sometimes they just can't handle it. And you might find that it's an unexpected person who supports you. People ask stupid questions like, how are you and how are you feeling? Which just makes you roll your eyes because, so don't, if you're in that situation, ask how are you feeling? You can just say, I don't know what to say, but I really.

Katherine Froggatt (46:42)

Mm.

Barbara (46:43)

and I'm really, really sorry that I wish I could help you. Maybe would you like me to come and clean your windows or cook for you? Even the cooking can get a bit tricky. I I all these casseroles and after a while, know, the casseroles are just, hmm. But I certainly remember the group that they cleaned the windows, they brought firewood in for

Katherine Froggatt (46:53)

Or cook for you. Yeah.

⁓ yeah.

Barbara (47:11)

it was getting into winter, they repotted my pots for me. I was in tears over their generosity. And they all settled down on the deck outside and had a lovely morning tea as well. And just hearing the laughter and hearing, you know, I was in the bed. But it's nice to hear people laughing and life carries on, but they were there. They wanted to help. Of course, they did bring food, of course. It's practical things, just practical things.

Katherine Froggatt (47:24)

Yeah.

Barbara (47:38)

Yeah, things. I keep coming back, it's everybody's journey. There are some basic overarching similarities, but it's not the same. And also, don't know the background. I mean, I've over the years had women with exactly the same breast cancer, size, everything that I've diagnosed and been involved in the diag, telling them.

Katherine Froggatt (47:38)

Mm.

Mm.

Barbara (48:01)

their reaction is completely different. It can be they see themselves in a coffin because that's what happened to their mother and you can't get them out of that thought pattern or else they're very practical and they'd ask for advice and they accept the surgical option and they know that they they're needed back on the farm. ⁓

Katherine Froggatt (48:24)

Yeah.

Barbara (48:24)

You get all sorts of stories. mean, we have had women here because I'm in a rural area who have to help with carving or whatever. they won't do radiotherapy because they can't be out of the system so long. And you think, this is terrible, but that's their choice. They they'll have the mystique to me. They want to get it over and done with. they, they just need to, and you think, is this abusive? Are they being abused? But

No, that's a farmer's wife and she's making that decision and it's different for someone else. So all I'm saying is it's a very personal story.

Katherine Froggatt (49:00)

Yeah. So what I'm gathering, slow down, make the decisions, there is no rush because sometimes the system wants to allocate us quite quickly. ⁓ so slow down, we do have options, right? How empowering is that, Barbara? That we do have options, we can ask a hundred questions. And I remember Dr. Modi entertaining all of my questions, like after we've gotten to know each other, he says, Right, Katherine, I know you've got questions, so I'm here to answer them, you know? And he was always listening. So form my own team.

Barbara (49:07)

Hmm.

Yeah.

Katherine Froggatt (49:28)

⁓ and it's absolutely right. There'll be people that are surprisingly going to just drop into being your team and there'll be some people who won't be my team. And I always find this journey quite interesting after coaching several women is that they've realized some friends just distance themselves. They they just kinda leave the circle and then they become a little bit awkward. and I tell them this this is the life detox that we're going through at the moment and I've I I've gone through that because there are some people who will

Barbara (49:44)

Mm, mm.

Katherine Froggatt (49:55)

freely give you unsolicited advice which sent me into depression which happened for me and so I realized I had to formulate my own team from scratch. and give ourselves permission to do so. I'm so with you on that Barbara. It's like we're all so different in our journey. What's happened in the past to my grandmother is not gonna be the same for me. And so I found that very empowering hearing from you especially when you've got the the clinical hat on and

Barbara (50:00)

All

Katherine Froggatt (50:18)

And the lived experience hat on as well, Barbara. So I have I have I have so much respect for what you've gone through and thank you so much for your generosity and your time today. any any last or final words for ⁓ any of my our listeners and tell tell us how we can find you and the Aratika Cancer Trust retreats.

Barbara (50:20)

Mm.

Well, yes, just Google Aratika Cancer Trust. And we're based here in Rotorua. We have a wonderful manager, Shelley Garden, and we are very closely aligned with the Cancer Society, which I'm really glad about because unfortunately sometimes

You get lots of different providers who want to look after you with cancer, but they're all fighting for ⁓ funding, because we've got Breast Cancer Foundation, which has its own big funding. But we, as I say, although we do have predominantly breast cancer patients, or they're not patients, they're our clients, participants, we do have other patients as well.

Katherine Froggatt (50:58)

Mm.

Barbara (51:19)

So we're based in Rotorua. Shelly will answer the phone. She will be able to keep in touch, fit you in, tell you what we're doing. We have, as well as retreats, we have workshops. I think, in fact, there's one just coming up by a yoga person who's talking specifically about yoga in cancer. ⁓

Katherine Froggatt (51:43)

Mm.

Barbara (51:43)

And they'll be on the website and, and yes, people who do come here from out of Rotorua have often enjoyed our retreats because they are in a very peaceful location. We're starting at the moment to use more Lake Okarika through Susie Brown has got some wonderful connection and is able to get us ⁓ very lovely Airbnb's that are peaceful on the lake.

just a very special place for people to stay. And we still have our wonderful facilitators. And I think it does evolve, the trust is evolving, but some of the core trustees are still there, which I think is a reflection that we have been authentic.

Katherine Froggatt (52:28)

Yes.

Barbara (52:29)

not had ⁓ Well, these trustees pull up their sleeves and they help with all volunteers. We're all volunteers.

Katherine Froggatt (52:34)

Mm.

Barbara (52:37)

And in some ways that is the biggest strength is that we are volunteers. And probably the dream I'll finish off will still be to get that bus ticket, just to get the equivalent. when Mr. Modi saw you, I know he's lovely. He would have answered your questions, but if he could have given you the bus ticket that gave you now you've got to do the med the meditation and the neutral.

Katherine Froggatt (52:48)

So with you.

Barbara (53:01)

then you just sort of work your way through it and be feeling that all these options are there for what will be your journey. Although I find the word journey is overused.

Katherine Froggatt (53:12)

Yeah.

I yeah, I know. Yeah. Yeah,

we need to create another word. But thank you, Barbara. It is so fulfilling to know that I've got some people in my corner who is always going to offer me something new and you guys are upfront with what you do. The mission is very clear and you want to help people. And I think I'm absolutely on that journey with you to have that bus ticket to offer to every single person that is going to be diagnosed with whatever type of cancer.

But knowing that there is something else out there that they can kind of embark on as part of their recovery is not just a one pathway. There's several other opportunities. So thank you.

Barbara (53:53)

And

they are, the other last comment is, and they are in control because that's what I heard before my own diagnosis, that all control is taken. You know, others are making the decisions all the time that you don't have control. And it's a big, that's the criticism. You know, the nurse, everyone's telling you what

Katherine Froggatt (53:59)

Mm.

Barbara (54:16)

to do, but you have lost control and you feel like you're a sausage factory. And I remember this very clearly being told to me that there's a degree of anger as well that, you know, being told all the time. Well, through all the things we've discussed, we take that control back.

Katherine Froggatt (54:33)

Yes,

Thank you,

so much. Thank

thank you, Barbara.

Katherine Froggatt (54:36)

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