Overcoming needle phobia and Acute Myeloid Leukaemia: Cathy Koning’s candid reflections

[00:02:36] Kate: Hello and welcome to Talking Blood Cancer. I am your host, Kate Arkadieff. Today, I am sharing my conversation with Cathy Koning whose journey with acute myeloid leukaemia began 14 years ago when she was diagnosed at the age of 58. Now 72, Cathy brings us the precious gift of perspective that only time and experience can provide.

This conversation explores the full arc of a blood cancer journey from those first puzzling symptoms of the unexplained bruising and extreme fatigue to the challenges of being truly heard by healthcare professionals through the intense reality of chemotherapy, stem cell transplant, and learning to live with the chronic graft versus host disease.

What strikes me most about Cathy’s story is her remarkable resilience through an extraordinary period of life transformation. After 37 years together, her and her partner Fred decided to marry, following her near-death experience in 2012. A beautiful affirmation of life and love in the midst of a cancer journey. And just two months after her stem cell transplant, Cathy faced the loss of her mother. A poignant reminder of how life’s major events often arrive in a cluster, demanding our strength when we might feel we have nothing left to give. For those of you currently in treatment, those supporting a loved one or anyone living with the lasting effects of a blood cancer treatment, Cathy’s insight offers both practical and wisdom and emotional reassurance.

She reminds us of the importance of self-advocacy, finding community, and perhaps most importantly, discovering joy and purpose in each and every day that we are given. I am truly grateful that Cathy has shared her story with us today, and I hope her experience brings you both comfort and courage wherever you might be on your own blood cancer journey. Let’s listen to Cathy’s story.

[00:04:35] Kate: Good morning and welcome to The Leukaemia Foundation’s podcast, Talking Blood Cancer. Today I have a very special guest by the name of Cathy, who I will get her to introduce herself just like we do with every other guest. So, thank you, Cathy, for being on today.

[00:04:49] Cathy: Thank you. It’s a pleasure to be here.

[00:04:52] Kate: Oh well, look, as I’m sure we’ve just discussed that you have heard some episodes before and you do know that we usually ask the guests to introduce themselves by letting us know who they are, where they’re living currently, what they were diagnosed with, how old they are, who is in their support network, and what was happening around diagnosis.

[00:05:12] Cathy: Okay, there’s a few things to cover there. My name is Cathy Koning. I’m 72 years old. I live in a small country town just north of Melbourne. And I was diagnosed with acute myeloid leukaemia 14 years ago. And my support network is huge. It’s the Alfred Hospital, my GP, of course, my dear husband Fred, and many friends and my family. I have a fantastic support network and that’s continued all the way along. And I must say have fairly recent connection to the Leukaemia Foundation because I had such great support. I didn’t need the services like accommodation, etc. that the foundation offered at the time. But I am on the um, private Facebook page of the Leukaemia Foundation’s AML site.

[00:06:09] Kate: Oh, it’s such a fabulous resource and I think it’s a place where so many can come together and connect, who are being impacted by specific disease and chat all things and share tips and support and advice with one another.

[00:06:22] Cathy: That’s right. And also you realise, you know, I was in ICU once and thought I was the first and only person who’d ever been in ICU in this situation. And then you read that people have been there more than once with sepsis, etc. And you just realise that we have similar versions of the same disease. But we have such varying experiences of it. Our bodies are going to respond differently.

[00:06:48] Kate: Somebody can have your diagnosis and going through the same treatment, everybody’s different, responds so differently and reacts in a very different way. And I’ve had many people ask, “Oh, how am I going to react or respond or what’s going to happen?” The answer I feel so sorry because it’s such a frustrating answer that I have to give. And it’s that nobody is the same. We can give you a general idea, but it’s not prescriptive and nobody knows exactly what a side effect will be or how your body will respond.

[00:07:19] Cathy: Exactly. And I had to learn that just by going through it.

[00:07:23] Kate: Very true. So can I ask how many years ago was it that you were diagnosed? 

[00:07:28] Cathy: Fourteen years.

[00:07:29] Kate: 14 years, so some time ago. So can I ask you to cast your mind back to 14 years ago to what was happening for you at around this time when you became unwell?

[00:07:40] Cathy:  Sure. I was actually in a job I loved. I was running a sustainability program for two local shires and I was getting towards the end, and it was very successful and it was through a grant. I was just feeling weaker and weaker. And I was getting bruising and I thought to myself, “Oh, that’s a sign of leukaemia.” I didn’t know much about leukaemia.

[00:08:01] Kate: Oh really? You thought that?

[00:08:02] Cathy: Yeah. I did. And I just felt odd things like mosquitoes didn’t want to bite me anymore. And I thought, “Oh.” And I tasted my blood because I’m an avid gardener, oddly. If I scratch myself, I’ve got no taste really of iron in my blood. Something’s wrong. I must be getting it just because I was nearly 60. And I went to my doctor and she says, “Oh, no, you’re fine. It’s probably just, you know, you’re getting older.” And I must say, as someone with needle phobia, you’re very good at avoiding blood tests. And somehow you can start to work this psychology onto other people. Your fear, yeah, they don’t want to make you upset, subconsciously. So anyway, I was getting sicker and sicker. And it took a while for me to be diagnosed. I went to the doctor a few times, different doctors in the clinic. And no one said, “Oh, we’ll give you a blood test.” And then I went to outpatients, to emergency, and they said, “Oh, you might have a UTI.” And I was actually coughing up blood, I mean like rice and I could hardly walk from the shop to home. So I thought, “Oh, this is really serious.” So I just kept trying. I went back to the GP, finally got a blood test. And then they rang me in the middle of the night, said, get yourself straight to emergency. You’ve proven likely got leukaemia. And I went, “Ah, okay, right” 

[00:09:29] Kate: And did it make sense at that point? ‘Cause you said you already had this somewhat knowing that it potentially could be.

[00:09:36] Cathy: Yes, it did make sense.

[00:09:38] Kate: Wow. And for you to get that call in the middle of the night. Were you at home alone?

[00:09:45] Cathy: With my husband.

[00:09:46] Kate: Mm-hmm. And then, so you had to pack the bag.

[00:09:48] Cathy: Yep.

[00:09:49] Kate: And head into town and you said at the beginning of this that you were in regional Victoria. So were you able to..

[00:09:55] Cathy: Well, actually at that time my husband was working at Monash University and we were in an odd situation, but actually it was a fantastic situation in the end. He was at Xavier College, had a flat and in exchange for looking after the students when he wasn’t at his job, he got accommodation. And I had just finished my work with the Shires, so I was living at that flat. We were both there. And so, that’s where I recovered. Which is an unusual place, because there are hundreds of students around. But it was a private, and it was actually very comforting to hear the kids going off to school, and just hear them, and just being there.

[00:10:40] Kate: Life to happen around you.

[00:10:42] Cathy: Yes. But I didn’t have to be part of it. I could just recover.

[00:10:46] Kate: Yes. And so it is a very interesting and unique situation to be in, and to be in a boarding house, well, school I should say. So you went to the hospital. It is so foreign and it’s so new for people that I, don’t, haven’t ever experienced a medical event before. How was that, turning up to the hospital going I think I may have leukaemia, I’ve been told this. Did you understand the seriousness of it at that point?

[00:11:11] Cathy: Very much so, and it was the Alfred Hospital. And it’s funny because I had known other people who’d been there and treated well and, my husband had actually been there too. And so although, where was it going to go? I thought I’m going to the Alfred. It just was something instinctive. And so, when I was there, it was surreal.

[00:11:33] Kate: Was it? I can imagine. And in what way, what was surreal about it?

[00:11:39] Cathy: Well, because all of a sudden my life had totally changed. I was a pretty healthy person through my adult years. And I thought, it’s come. And so, got the diagnosis very quickly once I was in the hospital. And then we go, “Okay, now, where do I go from here, and what’s life going to be from now on?” Is there any more life coming, maybe this is the end? And I was thinking, not ready. I want more, I just want more life because I had a good life, and so I had to deal with that.

[00:12:14] Kate: I really appreciate you sharing that because I think that so many people, they do share that initial thought of, “Oh my gosh, is my life ending? Is this it?”

[00:12:24] Cathy: Yes.

[00:12:25] Kate: And it can be a really hard thing to voice. Because sometimes you don’t want to voice it because you don’t want it to be true and then also you don’t want to voice it because you don’t want to hurt your people that are around you. Did you grapple with that?

[00:12:39] Cathy: Not really, because in some ways I’m sort of a realist except the reality and maybe that’s partly to do with my family background, having Dutch migrants. They had to face a lot of realities to do with living through the occupation and also the depression. Both those things really affected, especially my father’s life. And they saw things in a sort of a realistic way. They weren’t dreamers, dreaming of, “Oh, it could be positive.” No, they were doers and hard workers.

So, I was.. Look well I’m not going to keep this secret. That wasn’t going to use any energy I didn’t have to just keep it to myself. My husband, Fred, supported me the whole way. And what we did, which I think some other people might do too, do an email train. I was actually incapable of even speaking to anybody. All I could do was just get through what I had to get through in those early days. And he made an email train so he didn’t have to repeat everything. And my father had died already, he would send contact to her every day. I wish I could have done this, but I couldn’t cope in newer days with anybody visiting me except for Fred. So I feel bad about that now, but it’s all I could do.

[00:13:58] Kate: It’s a lot, you know, you feel that you almost have to entertain that person. You’re holding space for that visitor. Sometimes, it can be awkward because they don’t know what to say, you don’t know what to say. And purely you’re exhausted and you don’t want to have to leave the social interaction.

[00:14:15] Cathy: Exactly right. And you see sometimes it’s in a room on my own, but sometimes with someone else. And everyone would come in and just go, ”Oh, how can they cope?” I couldn’t answer one question. Because I was always answering questions for the hospital staff. How am I feeling? Do I need a Panadol?

[00:14:34] Kate: Have you gone to the toilet today? What did you eat? What’s your fluid?

[00:14:39] Cathy: Yeah, and all the tests, all the time. I wasn’t interested in any social interaction at that time.

[00:14:46] Kate: Yeah. and you know what? I think it’s a really beautiful display that everybody does it differently and that it’s okay. And did you find you needed to communicate that back to your social group and your support group to say, “Hey, look, this is where I’m at and this is what I need. But I know you, I’m supported by you, but respect this request of no visitors. Etcetera?” 

[00:15:10] Cathy: Yeah. Yes. And I did that through Fred and through the email and everyone was totally understanding. It was not an issue at all. I got total support and they would communicate in all different ways. Well, I mean, one day I’d have real flowers, but gifts and cards and emails were coming and just realised, “Oh, my goodness, I’ve got such an amazing group of family and friends.”

[00:15:37] Kate: And so, with all of that, knowing you had those people behind you and you having to go within yourself whilst treatment was going on, how was treatment?

[00:15:48] Cathy:  I dealt with it. I mean, the chemo, I had to have two rounds of chemo. Put the AML into remission, but those cells were still hanging about. I ended up in ICU through sepsis, because the second round, I got an E. coli. Because actually what I was amazed at, when chemo knocks out everything, your good cells, red, white, platelets, whatever. How come you’re still walking around? How come you’re even thinking and alive, I don’t understand. I was still functioning under those conditions. And then E. coli got in. But luckily I was in the ward, about to go home, dressed ready to go home, and I cracked a fever. And the nurse, she was spot on, said, “Hey, this isn’t right,” then I became unconscious. Before you knew it, I was downstairs. So if I had have gone home. And then just my friend who was picking me up left me there. I might’ve just gone to sleep, and Fred comes home, and I’m in a coma. So there was so much luck there. So I immediately was intubated and in a coma for a week, and I was in ICU for three weeks. And what I thought ironic is that. Okay, I’ve gone through all this, but it had no effect on the leukaemia. I’ve still got those cells running around. Anyway, got through it.

[00:17:14] Kate: And I think there is that message in what you’ve just said. It’s how the scary thing about this disease and treatment is that things can change quite quickly, completely without your control. As you said, you were sitting on the bed, ready to go home, dressed, feeling relatively okay. And then things changed very quickly and very seriously in a matter of moments.

[00:17:38] Cathy: Poor Fred was brought into the special room to say she might not make it through the night. Everything failed and interestingly too, as I came out of the coma, I had incredible hallucinations and the nurse said, “You won’t remember any of this.” And I remembered all of them.

[00:17:59] Kate: Really wow.

[00:17:59] Cathy: Yeah, and they had one theme, they’re very surreal, of course. That I was trying to get to a point of reality. I was trying to get over a wall or a gate or go somewhere, make a journey to get to this other place. And it was really interesting.

[00:18:18] Kate: It could have had so many meanings.

[00:18:20] Cathy:  Yes.

[00:18:20] Kate: For that. Um.

[00:18:22] Cathy: Yeah, that was the core of it.

[00:18:24] Kate: But it goes to show where your potential, your subconscious was at, and what you were internally fighting, even though you’re fighting every day. But to know that’s where your brain is sitting at every moment.

[00:18:36] Cathy: I worked out a little technique which might be helpful for others. A long time ago, flying from the States to here, home on Pan Am, coming through Hawaii, we went through a massive cyclone, huge. And what happened was, it was incredibly rough and bumpy. Then it was quiet in the eye, and then it was rough again. And remember the pilot saying, as we landed, “Oh my God, these jumbos are incredible. We really were in a big issue. And we made it through.” And I thought, I’ll use that, to go okay, I’m going to be in the cyclone. Then I’ll get the peace of being in the eye and resting, and then I’ll have to go back into the cyclone again. And I found that incredibly useful.

[00:19:27] Kate: Wow, that’s really powerful. Did it give you almost a sense of control over your thoughts to go, and a loose-ish kind of plan as to what the next period is going to feel like.

[00:19:41] Cathy: It did. And I used it whenever I needed to. And that was a bit of a lifesaver. And also, I had the thought that I wasn’t in a battle with my cells, those cells were me. And in some ways, I wouldn’t say I love them, but my body had done this for some reason and I wasn’t going to hate those cells. I’m just going to try and with the doctors and nurses and everybody, try and work out a way where those cells were no longer doing what they were doing to me. Which was actually my white cells were multiplying on an immature level and just flooding my body. It was, they weren’t turning.

[00:20:23] Kate: Much like a cyclone.

[00:20:24] Cathy: Yeah, weren’t turning into the right cells, stopped work. So I thought, “What’s going on?” but I didn’t hate them and I thought, I’m not in a battle. I’m just in a situation and let’s see if there’s any way of changing this.

[00:20:41] Kate: So much like you surrendered to it.

[00:20:43] Cathy: I didn’t go through all those grief stages. I just accept it. Alright, this is what it is. Now what? I’m in the best place I can be. Got the best care maybe in the world with the Alfred. And had the best haematologist in the world. And he’s still my haematologist. 

[00:21:02] Kate: Is he?

[00:21:03] Cathy: Yeah, and that’s with other hospitals too I’m sure. They try and keep the same person with you the whole way. And he’s still my haematologist yeah.

[00:21:13] Kate: Because the energy, you’re already fighting for your life and the energy then that you need to draw on to be angry at the situation. I think absolutely like we don’t want to flood it with toxic positivity. But the energy that you need to draw on to be angry is. At times, I think it’s great to experience those emotions and emotions that feel uncomfortable about your situation, but they’re really draining. Like it’s really draining to fight against the tide, all the time. And at times of course you come across the moments when you can be really annoyed and you can be, why me, what’s this, and you’re frustrated at the process. But as you’ve said and explained, surrendering to it allows you to flow through, just that little bit more.

[00:22:03] Cathy: I never ask why me? I sometimes ask why not me? I guess this sort of thing has helped. Okay, why shouldn’t I get cancer? I’ve lived a life of nearly 60. Who knows? I’ve got some ideas of what might have caused it. I can’t prove it. But living that long, why not?

[00:22:25] Kate: Yeah, and the answer at times, although it’s really important to our brain, because sometimes I believe our brains don’t settle until we have an answer or something that makes sense. Finding the answer as to why or why you, it doesn’t change or get rid of the situation that you’re in. Maybe will click a play, a puzzle piece into place, but it doesn’t change the circumstance and the diagnosis and what is in front of you.

[00:22:52] Cathy: No, I thought, I grew up on an orchard, and we had peaches, pears and apricots. A big orchard behind our house, our water tank was open. And dad was spraying all the time. And this may still go on, but one of the products he used was not DDT, but it was a, like a cousin of DDT. And some of the stuff he used is banned now. And when he sprayed, and it got into our water supply and also got right over our house. And that could have been a reason. I also thought I used to also love to dye my hair. Was it hair dyes? But you just don’t know. I had a gardening business that had a diesel ute. And I think benzenes, was it driving around all the time in my diesel? As my haematologist said, they actually don’t know. So, there are some things that could be a problem.

[00:23:48] Kate: Some indicators and some factors.

[00:23:50] Cathy: Some indicators, yeah.

[00:23:51] Kate: As I said, you wonder if you did know the actual answer, what would it do? And what would it change? At this point in time, it would be nothing because you still have to go through the disease and treatment.

[00:24:04] Cathy: Yes.

[00:24:05] Kate: You mentioned at the beginning of this podcast, which I think was really interesting and I’d love to dive into it a bit more. You said that you had needle phobia.

[00:24:15] Cathy: Oh, yes.

[00:24:16] Kate: Blood cancer and needles, they go hand in hand. So tell me about that?

[00:24:22] Cathy: It wasn’t just out of the blue, and I think for most people who have it, it’s not out of the blue. It was due to childhood experiences, when I was not even four, there was a terrible fad of taking out your tonsils, if you had infections. I don’t know why I have good memories of medical things, but I..

[00:24:39] Kate: It’s sometimes trauma, that’s why.

[00:24:41] Cathy: I remember being held down and fighting for my life as they put the ether, they used ether, onto my nose. And I remember the doctor saying, “Here little girl, have a blanket,” and I kicked him hard and I just tried to get away because I actually was under threat. 

[00:24:59] Kate: You’re in flight mode.

[00:24:59] Cathy: Yeah, I was in flight mode then after that I was not feeling too good. And then a few years later I got pneumonia from measles. And thank goodness for penicillin, because I might not have made it. I ended up in hospital, and they gave giant penicillin needles in the bottom. And as they came with that little kidney tray and the huge needle, I’d be crying before. God, because it really hurt.

[00:25:27] Kate: They do. They’re very thick.

[00:25:28] Cathy: Yeah. And then school needles where we queued up and there was no subtlety to it. You know because he had to process a lot of us. But that always is a horrible experience. And so from then on I did everything I could to avoid blood tests. And I mean, I had all my vaccinations and all that. I remember having a tetanus needle when a dog bit me as an adult. 

[00:25:55] Kate: Clearly not by choice.

[00:25:56] Cathy: But I was, no, Fred didn’t force me to the clinic. But he said, come on, you’ve got to have that tetanus needle the dog’s bitten you. Yeah, I was never looking for anything to do with any sort of needle.

[00:26:12] Kate: So how did you go about it? Because you can’t avoid it in blood cancer.

[00:26:15] Cathy: That’s right. So, I would talk about it with anybody from an old record, to say, I am frightened. Like, when I had Hickman put into my chest, I had to say to the radiologist, I’m terrified. And, basically, everybody went, sort of didn’t say too much, but they go, yeah, okay, we’ll look after you, but we have to do it. So basically, okay, I’m terrified, but it’s too bad. I did get a bit of help with the therapy aversion, but I just had to manage it. I just had to deal with it, and I just had to take it. And it’s even now, because I have blood tests, quite regularly, just to keep monitor where I’m at. 

[00:26:58] Kate: Yeah of course.

[00:26:58] Cathy: Because with graft versus host disease I have side effects. It’s chronic, I have it chronic, nothing is affecting, oddly, I still have a normal life. But I live with graft versus host disease, which affects in quite a few different ways. So, I just manage.

[00:27:16] Kate: So did you think that by voicing, like I hear and reflect on what you said as a child and your experiences. And what I see about those situations, is that you weren’t emotionally safe. And was you being able to voice it when you were diagnosed with your blood cancer? Like, hey I’m really frightened and it’s not just a fear of, oh, I don’t want to do this. It’s this situation scares the living daylights out of me. Did that help set or change the energy or the experience at all?

[00:27:53] Cathy: Absolutely. Because it’s better, as in my philosophy, to face it and if I could voice it, I knew it wasn’t going to stop anything. You know, if I say, oh, we won’t give you a blood test today because you’re scared. No, you’re having it. But just to be able to say, okay, I’m scared. And then, it’s out there and it’s like the fear is much bigger than a reality. You know, you’re sweating, you want to run away, you’re terrified, but the actual needle or whatever. It’s like when I have COVID, I’ve had five COVID vaccinations, it doesn’t hurt much. It’s not that, the fear is bigger than the actual reality of having, not always too, because some of it can really hurt. But in the end, you just manage and it’s what that moment to the cyclone, you know, you’re in it. Okay, it’s done. Calm.

[00:28:47] Kate: Yeah, so true. And it’s, I think by voicing it as well and health professionals and that is their world. They see this medical space. Well, It’s their job, but it’s also their daily world. So things aren’t very foreign to them, getting a Hickman or getting an injection or seeing a bag of chemo or bag of blood. That’s so normal, but for the everyday person who is stepping into this world and not only stepping into this world. But having their life, as you said, turned upside down and then add in fear of an injection. It’s a heck of a lot and I think sometimes it’s, as you said, voicing, “Hey, I’m really frightened.” It helps remind the healthcare professional that, hey this is new to this person or brings you back, that healthcare professional back into the emotional space with that patient..

[00:29:40] Cathy: Exactly. And also, facing it is really important. And also, getting a Hickman or a PICC line. Oh my God, thank you to the people that invented that, because it’s a lifesaver. I don’t know if I could have coped, without that Hickman, it was a blessing.

[00:30:02] Kate: And sometimes they’re a curse with infections, but I absolutely, I can see how that they’re life changing and it’s treatment changing.

[00:30:11] Cathy: Yes. When I was in ICU, I didn’t have either of those. But then I had a huge bulge on my arm for where they’ll put, because I was a pin cushion. But the rest of the time I had them. And I can highly recommend that process.

[00:30:28] Kate: Yeah. I think, yeah, thankfully it’s very stock standard within many treatments and definitely within that acute phase anyway. You mentioned graft versus host, so I’m guessing you then had to have a transplant?

[00:30:41] Cathy: Yes.

[00:30:42] Kate: Did you know your donor or?

[00:30:44] Cathy: No, I uh, had the two chemos and now she said they didn’t quite work. And then I had a donor, anonymous, from Australia. She was 40 at the time, and I sent her cards. But I didn’t know she wanted to communicate with me, and I wasn’t sure, so I just thought we’ll just leave it at that. Some people, especially after a long time, can ask to meet them, but I thought, after such a long time, that’s what it is. And she is the most special person in my life in that way, because she saved my life. And it’s interesting that, you know, we were compatible and not a hundred percent, I guess it being someone I wasn’t related to. My two brothers were not compatible, but I think now they can even do a half. Maybe now I could have had one or two of my brothers as a donor but it wasn’t available then. So she’s very precious to me. And it’s funny to think I’ve got cells of someone else in me.

[00:31:50] Kate: Absolutely.

[00:31:50] Cathy: So weird in some ways.

[00:31:53] Kate: Exactly. And that your body, you said you’ve got your challenges with graft versus host, that your body has, in a way, effortlessly accepted those new cells and has kept you in remission for all this time.

[00:32:07] Cathy: Yeah.

[00:32:08] Kate: It’s done its job.

[00:32:09] Cathy: I don’t call it remission. I call it cure. 

[00:32:12] Kate: A cure, yeah.

[00:32:13] Cathy: Doctors, because I engrafted well, it was slow. Everything was so slow in there, but it slowly but surely worked. Nothing dramatic happened. And I don’t feel very good, but it worked. And you think, wow, that’s an incredible process.

[00:32:32] Kate: Wow. It is, it is an amazing process and it’s, like you mentioned, you had graft versus host, so you still deal with some side effects, even though it was many moons ago?

[00:32:43] Cathy: Yes, I do. It’s part of my life. With, through these steroids of prednisolone, I got diabetes too. And the thing is, it runs in my family, so I might have got it anyway. But managed that with tablets. I have fibrosis on my lungs, we can hear I’m a bit, throaty. That’s minor. Things like probably my kidneys and my liver. They don’t perform 100%. They never have since the whole process. And I think maybe being in ICU for three weeks and, with everything collapsing, that probably affected everything as well. Also, skin things sometimes. That’s not major. I just live with those things.

[00:33:24] Kate: And how do you live with those things? Cause a lot of people sometimes think that transplan’s done. I’ve heard the word that I’ve reached the hundred days and I can go back into life. But it’s not as simple as that.

[00:33:37] Cathy: Oh, I know. The thing is and I’ve been feeling lately, I’m really over it. But it’s a matter of regularly, you’ve got to keep on top of it, and everyone will help you with that, but you have to commit to your side. And I remember going into hospital, I thought well, if I’m going to go through this process. Because I do know people who take the, oh well, I’ll do alternative medicine, and hopefully that will cure me. I thought I’m here I’m for the chemo, I have to commit to this, because why fight it if I’m here? Same with the whole process. People are there to help me, but I’ve got to help myself. If they say, I think you need to, you better test your kidneys, just to see where they’re at the moment. Okay, I’ve got to go and do the blood test, go and have the appointment, see where it’s at. And a lot of things you cannot change, you’ve just got to live with. But, you know, the monitor to see if it’s going to get worse, and there might be drugs you can take. Like with the lung thing, I take a drug, it just helps settle it down. But, you know, it might get worse over time, I’ve got to, it’s monitored. And the kidneys, they do a scan, just to see if they’re functioning okay. And the liver, that’s fantastic that I have those resources, so I’m going to use them. Oh, I know more about my body than anybody else in the world, you know, it’s, uh, a lot of people pay big money..

[00:34:53] Kate: Yeah.

[00:34:54] Cathy: To know about all these tests you just got to keep on top of it, know it’s there. For instance, yeah, with diabetes I take a tablet and I monitor my sugars every now and again and, you know, I have had insulin when it got really bad. You know, after the stem cell transplant, I was on a hell of a lot of drugs, and they will have side effects. And then you’ve got to manage the side effects, and it’s really tedious at times. But you’ve just got to do it. 

[00:35:24] Kate: It’s the commitment to yourself, isn’t it? You know, you fought so hard through treatment to live. And although life looks very different as it was pre-diagnosis it always is. And if, whether it’s physically, mentally, or spiritually, or all of them it’s the commitment to yourself to turn up every day and live as best you can. And that in itself isn’t easy. That’s a, I would say, and I know for anybody, it’s a daily commitment and it’s a choice. It’s a mindset.

[00:35:55] Cathy: Yes, and I never would call myself brave. Bravery doesn’t come into it. I am resilient but I just had to go through what I went through my own way. And it wasn’t bravery. That word doesn’t fit. It was more resilience, I think.

[00:36:14] Kate: No, I do like that. Resilience is sometimes also bravery sometimes can be seen as a choice you’ve entered into that situation. Where that’s not what happens with a blood cancer. But resilience is what you get in that, it’s almost like for me and I explain it to my children, it’s like that muscle that’s constantly tested and used and stretched and it gets bigger after every knockdown.

[00:36:37] Cathy: I like that, and also I find that there’s a level you reach. You might go through a really hard time, a physical thing or even mental, but then somehow you reach this sort of equilibrium. And you’re in there, you know, you’re back to this place which is, it’s not normal, but it’s I guess your version normal, and I rely on that. I’m feeling miserable at the moment or on this and that, but I’ll get back to another; this won’t last. And the one thing has happened too over the times that my husband’s had cancer.

[00:37:13] Kate: Before or after?

[00:37:15] Cathy: After. Twice, and it’s been in the last few years, he’s had prostate cancer. And then he had bladder cancer, and he’s had surgery for both those things and they’re successful. And he’s now just about 77, so he’s had to manage that and in his own way and he’s had an incredible experience too. And from what I’ve been through, I’ve of course been there for him, but that may have helped. And sometimes you make a joke, “Oh, you think you got that cancer, well I had this cancer.”

[00:37:52] Kate: They always say competition is healthy a little bit, but look, it always is in marriage but how is that? Changing roles from a patient to a carer, although Fred’s cancer is very different, but I mean, you still, as we know. It’s life living blood cancer and its side effects. So how did you manage that? That’s very interesting.

[00:38:10] Cathy: Well just day by day, I became a version of a carer. And yeah, so there it is, and..

[00:38:17] Kate: What lessons did you learn in that? Cause I think it’s a really, some people do, they unfortunately do get the sides of both coins. But what did you learn from being a patient to a carer?

[00:38:29] Cathy: How he approached it is a bit different to how I approached it. 

[00:38:33] Kate: Okay. In what way?

[00:38:34] Cathy: He’s more impatient, wanting to get better more. I was more like, I will go day by day, and won’t look too far over there. He was like, oh, I can’t wait to, oh, go on, I’m sick of this. I said, look, settle down. Ha, ha, ha, ha, ha, you know, you’ve just got to cope with it now. But no, he is actually fantastic. And he’s like me, he’s actually very proactive with his care. And you know, you have to be with something like bladder cancer, where there’s a whole new reality of dealing with your life and also prostate. Yeah, these are serious operations. And he’s had them over like, two years so he’s had a lot to deal with. But somehow, too, he finds that level of resilience and where he’s in a place where he’s, having a good time, finding some happiness he hasn’t let it knock him down permanently.

[00:39:29] Kate: Yeah, it’s interesting what you said about him wanting to run and I think, you know, and get better and go through it. I think that, it’s sometimes, it’s a very common thing for people wanting to do, they just wanna get this over as quick as they can and, move through it. Carer, you have that knowledge that you can’t do what you did. And you do, as you said, you need to take it day by day. And it’s, as a carer that can be really frustrating and draining to have to reiterate that message for someone.

[00:39:56] Cathy: That was okay. I just thought I’m here. I just didn’t try and let it worry me that, I was there to help. And that being sort of a rock, that is stability. So he can heal and get through it as in his own way. And I do, I think it works really well. And you realise as you’re getting into your seventies. Any time is a real bonus. So, sort of making the best of time, but it doesn’t mean that you’re going to be Miss Happiness all day. That’s not the reality. You just try and have the best life you can. And once more, all of our family and friends came to the fall. He’s had fantastic support and the hospital is, he went to is wonderful as well, but it’s ongoing. It’s almost like, you know, we’re retired now but it’s like, you should see our calendar. It’s so full of appointments.

[00:40:52] Kate: Do you mix it with social and joy? How do you balance that? 

[00:40:57] Cathy: Just do it. You just balance it. If you’ve got an appointment, okay, we do it. If we’re meeting friends for lunch, we do it. I’ve also been overseas four times since I’ve been sick. We’re average people, I don’t have children and we just make it happen so that we can do some trips.

[00:41:17] Kate: What I love about having this conversation is how much I really believe your perspective and outlook has really shaped the way you’ve handled this situation and life. It’s quite incredible to do that. And even as you said, like living in survivorship. I don’t know if you like that term, some people don’t, but I think you like the word cure. Living in that cure, that cured stage of a diagnosis and balancing the joy and the travel. It’s such a great message because some people think that’s never going to happen again.

[00:41:50] Cathy: Oh no, and as I mentioned to you in an earlier conversation, I’ve become a writer out of this. And I’m finishing my third book. I know. And that was amazing because it started with an archive of theatrical memorabilia of my husband’s great aunt. That we are caretakers of, because I had time I couldn’t work anymore. So I went through all that archive and wrote her biography and I made a website later and put that as a free book for anyone to read. And then I thought, now what’ll I do next? I’ve really got this writing bug.

It really helps me. So also I was a gardener, I had a gardening business so gardening is incredibly important. But I wrote a book on my cancer. I thought this might help people and out of that there was two letters in the archive written from Borneo to a nameless Dorothy Rudder in 1919. And they were like love letters. Who’s this man? And he turned out to be one of the biggest con men in history. He was American. And I researched him. I’ve been doing that on and off for seven years. And I finished it now and I’m going to self-publish this book. And I found the most incredible story. Just amazing. We’ll see where that goes. But this keeps me going.

[00:43:17] Kate: Yeah. What a different life from gardening.

[00:43:21] Cathy: Well I’ve also been at school teaching photography and publicity. And that’s been a bit of a lifesaver for me and I kept gardening, but of course I didn’t have the energy, but I did keep it going. I have an acre garden, and it’s totally organic, and there’s a lot of indigenous and native plants. And that’s been a lifesaver for both of us, Fred and I could sit on the back deck and the bird life has increased incredibly, been this, looking after this garden. But the town I live in is called Pyalong. It’s in granitic sand country. It’s pretty rough, but you can work it and get beautiful soil and beautiful plants. So you just got to go with what’s there. Don’t try and plant a beautiful little English garden that needs watering every day. And you know, we’ve got heavy frosts, so just got to use what’s available that fits.

[00:44:17] Kate: Got to merge within the environment. I think that, yeah what a message. Almost in that, in itself, it’s about, you can’t create something and have an outlook and try and hold that persona of an English garden when the environment just isn’t serving or going to serve that. It’s just going to fail you and it’s what you can do, what you can control, what makes you passionate and adapt to that.

[00:44:41] Cathy: And that’s what I found too with my writing, because with things like publicity and being a teacher and going to university. You know, you’re using writing but it was always there in me as a kid, I made a little newspaper. It only lasted two editions, and so doing this writing and doing this research, I found out that I am a natural researcher. And with this work, you’re training your brain. Lateral thinking, I’m using more of it, and you realise too that sometimes you’re totally the wrong track because you’ve been given, especially with a con artist who was a trained liar when you’re reading a newspaper article you’re going on that line and you go, “Oh my God, that’s totally wrong.” And then you go somewhere else and it’s a lot of enjoyment in that. You are also taking a risk, when I put it out I’m gonna have to say, disclaimer, look, this might not be hundred percent accurate as far as I’ve gone with this. 

But with the book I wrote on my cancer Life Blood. I could just talk about my history and actually what I went through. And it’s funny because a few of my friends, and they’ve read it, they had to stop reading. They got upset. They said, “Oh my God, I can’t read what you went through. I’m so upset” and they’ve had to put it away. So this is one person’s experience and I think you hear often, that the doctor’s side and that the medical side. But here was one patient who, this is what I went through, but it’s not necessarily what anyone else will go through. But there’ll be a lot of comments because treatment has changed since that time, but there’s a lot that hasn’t changed, I imagine.

[00:46:17] Kate: Yeah. And I think the emotional adaptation to what a diagnosis does to one’s life and, although it’s so different for everyone, there’s common threads within it. That essentially what was what this podcast was born of. It was born of having spoken to so many patients saying, I just want to hear somebody else. I just want to talk to another patient. And it’s not always as simple as to pair people together and they would always be “I just want to hear somebody else who has the exact same disease and same treatment.” And as we say it doesn’t matter who sometimes you talk to. Although yes, can be similar, but in whole, everybody’s experience, you can always draw from something you can always take a little piece away from somebody’s journey and apply it. And give it a go and be a perspective or someone may share a hint and it changes the way you view your disease.

[00:47:12] Cathy: Exactly. And I actually find that with reading, it doesn’t matter what I read, even if it’s like maybe it bored me silly, a lot of it, it’s always get something out of it, something valuable. And I think these podcasts are really good because they show all the different people with their different experiences that yet we’ve all got a core of going through something very challenging. The Leukaemia Foundation has created these podcasts, I think it’s brilliant.

[00:47:42] Kate: We’re very proud of them and we’re always thankful for the people that come on and share their story. Because as we say in the pre-meeting of this podcast is that this is your patient audio archive and we respect that. And just like you said, like sometimes people share things on this podcast where their friends and families and support networks have never heard before or had never heard their inner thoughts or their struggles or even how they’ve approached something. Just like your friend did in your book and it’s really insightful for so many people. It doesn’t matter, I guess what position you hold in the blood cancer diagnosis for someone or yourself. There are really interesting insight for so many.

[00:48:25] Cathy: That’s really good to share insights.

[00:48:28] Kate: Yeah. And nearing the end of the episode, we’re near close to the hour. We do always ask people actually for insights, golden nuggets to share with the listeners and you have beautifully shared so many tips. But can I ask you, are there any, anything in particular, or three things in particular, even one or two, that you would want to leave with the listeners of this podcast today?

[00:48:54] Cathy: Yes. One thing I said in my book was, I call this cancer, the little c, I said, because I refused to let it have that much power over me. It’s the little c in my eyes, not big cancer. Also AML is one of the most challenging of blood cancers, isn’t it? If you’ve got AML, you really got to be careful. Because I know that I was nearing to death by the time I actually got help. And I’d say, a big tip is, if you are feeling unwell, don’t try and dismiss it and say, “Oh, it’s just me getting older, or I’ve been working too hard, or that bruise is, probably because I got bumped or something.” Go and deal with it. And if you don’t get a first diagnosis that, if you’re still worried, keep going. That’s what I had to do. Because you’ve got to look right into your heart. Is this really something that’s not normal? Is it not just normal tiredness? Is there something going on here?

And I think often you’ll be, oh, if you really admit to yourself, you say, oh, this could really be a problem, you know, I’ve got to investigate further. So there are two things and also we are so lucky with our medical system. I am so grateful and still am, always am for what we have. And if you have some issues, just bring them up. It’s not perfect because you know who’s perfect? No doctor’s perfect. No nurse is perfect, no diagnosis might be perfect. And also sometimes I’ve seen in the hospital someone will complain, oh I’ve got to pay, 7 dollars 50 for drugs. I think, hello, just be grateful, we are so lucky to have what we have. It can be better and we have to support it. Very grateful for what we have.

[00:50:57] Kate: There’s some really beautiful points and it’s also really important I think what you highlighted too, like how you can call up. And if there’s something that’s not sitting right with you, don’t sit on it. Because things can change and it’s not to be alarming or fear-mongering, but it also helps empower you take control of your own health. And to you be that active participant in your disease. Don’t let the disease dictate you in a sense. But you be that active participant and unfortunately you usually need to be that Sherlock Holmes of your own body. Nobody knows your body better than you. And doctors and nurses only learn your body by you communicating with them.

[00:51:38] Cathy: Exactly right, Kate. Exactly right.

[00:51:41] Kate: Well, Cathy I can’t thank you enough today. I can’t believe the time has flown and we’re near on an hour. And what you have left within people’s ears today is some beautiful messages and a really great outlook and perspective and how one has control to do that. So thank you again so much, Cathy, for your time. And we thank you and wish you all the very best.

[00:52:03] Cathy: Oh, thank you so much, Kate. And I appreciate the talk. It’s really helpful.

[00:52:09] Kate: Oh, my pleasure. Thanks, Cathy.

[00:52:11] Cathy: Thank you. Bye.