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Hello everyone. This is Matt Feret, author of the Prepare for Medicare book series, and welcome to another episode of The Matt Feret Show, where I interview insiders and experts to help light a path to a successful retirement. If you enjoy this podcast, I'd love your support. How? Well, it's simple. Please follow, like, and subscribe to this podcast wherever you're listening to it. Leaving honest reviews and 5-star ratings really helps the show thrive. Thanks. I'm very excited to announce my new book and workbook are live. Prepare for Social Security: The Insider's Guide to Maximizing Your Retirement Benefits can be found on Amazon and other major online retailers.

(00:45):

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Helen Bullen's life was all going to plan. She'd put in years as an osteopathic doctor, ran a successful large practice, and had retired early. Right as she was on the cusp of launching her own business, she got a surprising wake up call, an aggressive stage 3 breast cancer diagnosis.

As you're about to hear, Helen very much thinks a positive mental outlook, including large doses of humor, helped her, her family, and her friends all navigate her cancer journey. The book she's written about her experience, Agnes, Bea, Cancer and Me, you'll have to listen to the episode to find out how she came up with that title. And it's pretty funny, is an honest, open, amusing, thoughtful tearful, and as she puts it, kindly blunt account of her journey.

On this episode of The Matt Feret Show, you'll hear Helen's suggested approach to dealing with a cancer diagnosis. How caregivers, family, and friends need a little guidance as well. And above all, how to help others going through cancer treatments. From the type of cancer they have to the multitude of treatments they can receive, everyone's cancer journey is their own, and there is no right or wrong way to do it. This is Helen's journey, and her advice is based on her own experience. And as you'll hear, she very much hopes it brings support, hope, and some laughter to all who listen to it. Enjoy. Helen, welcome to the show.

Helen Bullen (02:13):

Hello, Matt. Nice to meet you.

Matt Feret (02:15):

Nice to meet you. So, tell everybody what you do, how long you've been doing it, and how you help people.

Helen Bullen (02:21):

What I do and how long, that's going to age me. But this is a great podcast to be on I feel for that. So, I am a retired osteopath. I was an osteopath for 22 years, I think. And previous to that, I did some sports massage, and I was very sporty. So, I came from a background of playing national league volleyball, and wanted to be sporty.

(02:40):

So I went into osteopathy, set up my clinic, and got really good at that. And everybody said, "How are you doing this?" So alongside I started to become a business mentor. Lot of it the time for therapists, but actually now anybody that's a small business owner, that's probably one or two in the business who loves what they do but doesn't know how to do a business. They're the people that I adore working with.

(03:02):

And then lockdown came in 2020, and I was due to retire in 2023 in my head from doing the practical work and running a big clinic with 26 people with staff. It was going to be my time to just do the business mentoring. Lockdown came three years early. Well maybe not three years early for lockdown, but lockdown came three years earlier than I thought to retire. And then my husband got early retirement and redundancy. And I was like, "Hang on a minute. I'm not going to go in and be doing stuff seven days a week when you are at home." I couldn't even bear going in on a Saturday when he was off. It was like, "That isn't going to work."

(03:38):

So I just thought, "Actually now's the time." And I managed to talk my way, negotiate my way out my lease that I had on the building. So, I retired. And actually, what I then did was went all online and started being a business mentor, which I love. Well, I say started, I've been doing it for seven years. But I went into it... I was going to say full-time, but I actually still don't work full-time.

(03:58):

What I wanted to do was work when I wanted to work, with who I wanted to work with, and helping people that really needed my help, and it sounds really corny but made my heart sing. That sort of like, "Yeah, this is a worthy sort of job." I'm all for being paid, but I like to know that it's something that people haven't been able to find somewhere else.

(04:18):

So did that. I run retreats. I have the HB box, which if you are on visuals, you can see behind me, which is a stationary box. A lot of branding around the HB. So, Helen Bullen. I have HBClub, which is my membership. I have HBINSPIRED, my mastermind, HBretreats, and the HB books. So when I got married in lockdown... Again, another mistake, chose lockdown after 15 years to get married. That was hard. I didn't-

Matt Feret (04:43):

It probably saved on attendee lists.

Helen Bullen (04:47):

Yeah, It did. It did. I think we had five, we managed to sneak it in July, but I didn't change my name because H Helen Bullen is my branding, and I'm well known in the osteopathic world. I was also a lecturer and an examiner. So yeah, I'll be HB forever. Or a pencil, as somebody said the other day. "Isn't an HB a pencil?" I was like, "Okay, maybe."

(05:08):

So yeah, that's me. I'm an author of two books. I've got a book called I've Got Your Back, which is a marketing book. It actually is a marketing book for therapists, but it would work for any small business owner, where I talk about the sort of commit to achieve principles I work with. So nothing that's anything secret, but things that you can do to put into your working and your home life as well to make sure that you can run a business.

(05:32):

And then recently, I've just written Agnes, Bea, Cancer and Me because in 2021 after a routine mammogram, I got diagnosed with stage 3 triple-negative breast cancer, which I sort of know now, it was fortunate because I'd retired from my bricks and mortar. I couldn't have done the two together. My husband was retired, my kids were all good. So, on the positive side, I try and look at the positive as much as I can. It was a terrible diagnosis. But if it had to happen to me, it was sort of an okay time to happen. And then I just wrote a book about it, and it's sort of going a bit mad. Going a bit mad, the book, which is great. So yes.

Matt Feret (06:08):

So, 2021, things are going along swimmingly. You've got 20 plus years in a chosen profession. You're doing, if you want to call it side hustles, but you're also following other passions outside of just 8:00 to 5:00 Monday through Friday. You're going seven days a week, you're helping small business owners, you're helping other osteopaths. You're running a clinic. And you've done well enough, or you've been satisfied enough to say, "You know what, I'm going to do this other stuff full-time or part-time and I'm going to retire from what I was trained in doing and my passion for 20 some odd years, and go on this new life journey."

(06:44):

And then 2021, life pulled the handbrake, and you get a breast cancer diagnosis. Let's dig into that a little bit because I know a lot of the listeners are of similar age or have friends or family that have gone through breast cancer diagnoses. Let's dig into that a little bit. Talk me through 2021, what happened? How did it start?

Helen Bullen (07:12):

It started great. I did all my New Year's resolutions; it was all going well. And then I was due... In the UK, we have obviously the NHS, so we have a health service. And when you get to 50 as a female, you automatically get a mammogram, and then you get it every three years. So this was only my second mammogram. I didn’t have any symptoms. I felt fine. In fact on the day, I went for my mammogram... And in the UK as well, we tend to go to a trailer in the back of a supermarket car park. Wherever it is, because there's a car park there, and you can get into it. And they're all singing and dancing once you get inside. But it is a little bit weird. We have a Sainsbury's that we have, you pull into your supermarket, and then you go and get in a trailer and get your mammogram done.

(07:53):

So, it was my second mammogram and as I said, no symptoms. And on the day actually my daughter was moving, and I remember saying to her, "I'll just rearrange it." She said, "Oh no, mom, go, but I think you can go to a center that's nearer to where I'm moving to." So, thank goodness my adult daughter did the right thing. And I went.

(08:10):

And it's Covid, I'm standing outside but not allowed inside. But there's other people in there. It's pouring with rain. I'm a person that gets irritated quite easily and I was like, "I'm irritated, this is a waste of my time." And I had my mammogram, thought nothing more of it. And then probably about 10 days later, I got a letter through, and it just said, "Four out of 100 people get recalled after their mammogram. You are one of those people. Don't worry, it's very rarely cancer." And again, my head didn't trigger.

(08:37):

I've always been really healthy. Even if I get a cold, I don't seem to get it as bad as everybody else. I've always worked out; I've eaten quite well. I'd never smoked. I don't drink that much. So in my head, and no family history either, in my head, that was never going to happen to me. And I think probably that's a foolish thing for any of us to think, but "That's never going to happen to me."

(08:59):

So, I went to this appointment where you go to a special center where they've got more things they can check on you. And I didn't take my husband because I thought, "Well, it's going to be fine." So, I drove myself off there, you get taken in. And I did think, "The nurses are being overly nice today." And I was a bit like okay, "Yeah, I'm fine." "How are you? Are you okay?" And I was like, "Yeah, I'm fine. Yep, I'm good."

(09:22):

And then I walked into the radiographers... I suppose she was a consultant; she was a doctor. I walked in. And as an osteopath, I wouldn't read scans and give people results, but I can see a scan and see what's in it. We do get trained to look at it.

(09:37):

So, I walk in and I flippantly said, "That doesn't look good." And she said, "No, it's not. Sit down." And I just thought, "No, no, no, you're not supposed to say that. You're supposed to say, 'You're wrong.'" As an osteopath, a little bit of knowledge has been dangerous or something. But she didn't, she agreed with me. So that was the first bit of shock.

(09:57):

But then I was still in denial. And then she said, "Right, we need to get an ultrasound. It looks like there's something going on. We don't want to send you for another mammogram yet. We went to ultrasound. And there's a biopsy team waiting outside." So suddenly it escalated from being, "I'm fine, I drive myself, nothing going on here," to trolleys being wheeled in an ultrasound. And then she said to me, "It's in your lymph nodes as well."

(10:22):

And at this point, I didn't know what type of cancer I'd got. Obviously, breast cancer, but I didn't know what type, or what stage it was. They just said, "You have got it, we're going to be straight with you." And I remember thinking, "Okay," but my body physiology wise was shaking. It was obviously a trauma.

(10:38):

And I was more interested in that. I think that comes from the lecturer, pathology person than I am. And I was like, "That's really weird. My sympathetic nervous system is definitely kicking in here and my head doesn't think it should be." So I'm doing a lot of apologizing. I'm shaking, typically, going, "I'm so sorry to be in pain." All that sort of stuff.

(10:56):

Anyway, I then get taken through to a little room and they go, "Okay, we do want to sit and check you're okay. You need to ring your husband." I was like, "Well, I'll be all right." They're like, "No, no, no, we need you to"... It's very British to say, "You need to have a cup of tea and sugar." Well I don't like sugar too much or a cup of tea. So, I was like, "Well I'll have a black coffee if you get me one." So, they got my coffee, but some biscuits. So, I've got these biscuits and a black coffee and they said, "Call your husband." So, I just rang him. I said, "Hi Ed, yeah, I've got cancer. I'll be home soon." Put the phone down.

Matt Feret (11:28):

It almost sounds as if you're having a pseudo out of body experience.

Helen Bullen (11:32):

It was really weird. It was like, "Well I've got cancer, it'll be fine though. Because I always am." I was still on that brain wing wave. I have to put a little thing in there that my husband has had cancer too. He's had testicular cancer. So, I sort of knew he would get it. I knew he'd be worried. But at that point, there was no time for me to think of anything else to say. And all I was actually doing was trying to get out of the room with that nurse. She was being so nice to me, but I wanted to run off. It was like, "I need to go now because then I don't have to think about this."

(12:03):

Anyway, I managed to get out. I had to eat three Bourbon biscuits, which are little chocolate biscuits in the UK. Then she let me out and I got let out the back entrance and I thought, "They think I'm going to make a scene or something."

(12:13):

Anyway, drove home. And then you get on a cascade of tests, and eventually I got told that I'd got the stage 3. And I remember being told that. And that was probably the day that it all went a bit belly up because I remember listening to her, but I couldn't really hear what she said after she said that. They say that you don't really take it in. And my husband was there, and a nurse was there. And I remember coming out the room and saying, "That's it, I'm dead." And they went, "She didn't say that. She said it's an aggressive cancer, but she said that there is chemo and a mastectomy." And I was definitely on a pathway for that type of cancer. There's no talk of lumpectomies or anything like that. It is like right; the boob has got to go. And I call it a boob or Agnes in the book, call it my boob.

(12:58):

And that had to go and I had to have some strong chemotherapy because that's the protocol they do. Triple-negative, I think it's about 20% of all breast cancers. So, it's quite an unusual one. And it tends to come with people that have got a BRCA gene. You've probably heard of the BRCA gene that genetically people have got it pre, but I hadn't got any history of that. And actually, after genetic testing, I don't have that gene, or they've not found a gene that they think would cause it.

(13:25):

I wasn't in the age group and I wasn't, normally, the ethnic circles that it would happen in my age. I didn't fit any of the criteria. And actually, she didn't say, "You're going to die." She just said, "This is not good, but we are just going to attack it." But that was the first time. But then I have a husband who has a really good sense of humor.

(13:44):

So, we got in the car. So, he's 60. Well, he's probably 59 then I was 53. So, this is a couple of years ago. We get in the car and he says to me, "Do you think we should freeze your eggs?" Now we both have three children between us. And it's just so funny. We're far too old for kids, but it was the humor I needed. I remember just bursting out laughing. Of course, you wouldn't say it if somebody was in their twenties, but it was such a ridiculous proposal or thing to say, that actually it just cut the ice as it were.

(14:14):

So, he's great at doing that. And he's had testicular cancer, so he too can't have any children now because of that. And we do laugh that we are now a matching pair, that he is one balled, and I am one boobed. I mean you couldn't get a better matching pair, could you?

(14:30):

And I think what's happened all the way through it, there's been points where I've been in tears, and I call it snot and slobby, messy crying. I'm not a pretty crier, lying on the floor, saying it's not fair. But there's also been a lot of times that I can't help but put humor.

(14:49):

The consultant, she was great, my surgeon. But she was so intelligent, she didn't get my jokes. So, I would make little quips and I'd say to her, "Wouldn't it be good if you did a little sewing thing on your wall so I could see what your stitching's like when you do the operation?" And she'd go, "Would you just like to take a seat?" And I'd think, "That didn't work."

(15:08):

So, I used to call her the headmistress because I felt I was going to the headmistress office. And I have to say she has very neat stitching, so always good. But I just brought humor into it. The oncologist became a superhero, and he was good with his sense of humor. He got me. And I kept saying to him, "You need to wear a cape." And he would say to me, "You're making jokes today. That means you're okay to go for your chemo next week." And I'd be like, "Oh damn, okay."

(15:30):

So yeah, that's the story. Agnes and Bea. I name my boobs A and B, Agnes and Bea. Agnes for agony, and Bea, because my grandma was called Beatrice. I thought that was a nice name. I name my lymph node Larry the lymph node. The PICC line, which is the line you have in your arm, and I'm really squeamish, but I called it Percy the pig.

(15:48):

And in the UK, we have a sweet that's like a pig shape sweet that's called Percy Pig. So I was like, "That's an excuse to eat those sweets. I've got a Percy Pig." I don't know really how my brain works. How do I run a business? I have no idea.

Matt Feret (16:04):

So from my viewpoint, your personality defaults to a sense of humor, perhaps in the face of incredible odds. But that's the way you react. And not everybody does. But it sounds an awful lot like humor really, really did help your mental outlook, which I'm sure really helped healing or the way you attack these things. Do you think a sense of humor... I know people either have it or they don't, but how important was that sense of humor?

(16:36):

And also, how important was... Your husband you said as a sense of humor, the people around you and the support network around this. I mean obviously, a cancer diagnosis, I wouldn't be chipper all day long. And there'd be very, very deep moments of reflection, and sadness, and fear. How did those things work out? If you got an upbeat personality, a positive outlook, what was that balance like? Did you find yourself forcing yourself to be happy or people around you? How did all that work?

Helen Bullen (17:13):

Yeah. Well first, a little caveat. There was a lot of crying as well. So there was a lot of moody, irritated, crying days. And I do mention those in the book. I go that direction.

(17:22):

But for me, every day I used to smile in the mirror, because I had chemotherapy, I lost my hair. I put on two and a half stone of weight with the steroids. Everybody tends to think people lose weight when they've got cancer. But if the cancer hasn't got into the cells and it's destroying that area, then it's not a problem straight away.

(17:40):

But steroids, number one, make you hungry, make you put on weight. And as a woman, I didn't like that look. I didn't like not having hair, although I did like the hats that I used to wear. But I used to look in a mirror and I used to smile, and I've got a really cheesy smile. I'm known for doing selfies, like that, it's a cheesy smile.

(17:58):

And when I smiled, I could sort of see the inner me. And somebody said it's quite a triggering word, fighter in cancer, but I did take it on as a fight. Not particularly to win or lose, but to take action with it. And I do that with business.

(18:13):

So, it was interesting that my first book I wrote, I write about my commit to achieve principles. And I just applied them. And the reason I came up with those principles originally is because that's just naturally how I would run a business in my life. So, it naturally became that I would think about my own health. So I would make sure I tried to go for a walk every day. Some days, I couldn't get in my pajamas. But other days, I might be able to walk down the road. Some days, I could walk three miles. I would walk.

(18:42):

I would make sure I looked after my mindset. So, I listened to quite a lot of positive podcasts, and read, and connected with people. I had a really great friend, my friend Jackie, she actually gets a chapter in the book. And she was great because whenever we walked, she'd walk however far I was going to walk. She'd come and find me or pick me up. And it was Covid sometimes. So sometimes we had to go separately and walk. And we had all sorts of rules. You got to walk three meters apart. We do that.

(19:09):

And she was great because she listened, and she didn't really expect me to be anything other than what I wanted to be. So, if I wanted to talk about it for the whole walk... I remember one walk; I think we did four miles. And at three miles I turned her and said, "Would you like to talk now?" Because I had just told her everything.

(19:26):

And she was great. She just listened, she asked questions, was interested, and generally, didn't expect me to be anything other than how I wanted to be. And I think that's a great way to be with people.

(19:40):

And I am quite a strong character. I think as well I'm quite competitive. As I said, I used to play national league volleyball. I like team sports. So, my friends became part of my team. They were cheering me on, and not necessarily saying, "You can do this." Because I didn't like that platitude very much. Because at that time, my oncologist didn't know I could do it. So, when people said to me, "You can do this," I'd be like, "Well how do you know that?" So it was better when people said, "How are you?" And listened, or, "What was your chemo like? Tell me about it."

(20:15):

And I think probably the message to people is if you've got somebody going through it and you think, "I don't know what to say," ask them how they want to be treated. Just ask them and say, "Do you want to talk about it, or do you not want to talk about it?" Because both of those are right.

(20:30):

I was at a book signing last night and I remember saying, and everybody laughed, unfortunately I said, "I just couldn't keep it in." And you can probably tell, I can talk. I talk fast, I wave my arms, but my therapy is to sort of say it how it is. And writing a book was part of that as well. But some people don't want to tell their story, and that's perfectly okay as well.

(20:49):

So I think it's gauging the person and saying, "How are you? Do you want to tell me about it or do you want to talk about something completely different? What do you want?"

(20:58):

I'd go for coffee meetups. I've got a group of girls. They said, "Right, we're going to have coffee." And I said, "That's great." And we used to sit outside. I said, "But you talk about all the daily things you're doing and I'm just going to listen, because I'm too poor to join the chat, but I really want to listen." And that was really good too.

Matt Feret (21:14):

So your support structure, it only sounds like you were supporting your support structure a little bit with your infectious attitude and sense of humor. For people that don't approach it like that, or can't, or don't have that in them and they're feeling all the emotions I'm sure people feel, fear, trepidation, regret, anticipation, all those things. What would somebody do or what's your advice for people to do? What's your advice for people who necessarily didn't have at least that medical background and don't know what to do? Where do people start? I mean, you've got this diagnosis. You've got these steps ahead of you, you've got chemo, your hair's falling out. Where should people start in terms of how to prepare themselves, their bodies, and their brains for this?

Helen Bullen (22:08):

I think again, it's listening to how you work. And I would say everybody from today, work out what makes you happy. Because I always know there's certain music, if I listen to it, it makes me feel good. I know that seeing a sunrise makes me feel good. But it may be that it's complete silence that makes you feel good. It may be just getting stuck into a fiction book. It may be talking to a really specific friend or somebody who's gone through it.

(22:35):

But sometimes if we know before the bad things happen what our positive things are, then we can sort of go to them. You can always write it in a notebook. If I feel down today, I'm going to get myself for a walk, I'm going to down tools and phone a friend, I'm going to send a letter to somebody." There are things that you can do.

(22:54):

But as to if you've got the diagnosis, I'm going to speak from the UK, but I know it'll be the same for you and your healthcare. There are support groups out there and charities and reach out to them. And there's normally phone numbers you can ring, and there's, "I'm in a group at the moment, and although I've survived my cancer journey, I'm in a group for triple negative."

(23:14):

Breast cancer, some are going through it, some are getting occurrences. And I enjoy being in that group, because we are like a little band of people that get it. We get the story. And it's like anything in life, isn't it? Until you've been through it, you will never get it.

(23:30):

I remember my midwife saying to me, I have my second child, she said, "I want to apologize about when you had the first." And she was fine. She said, "I hadn't had a baby then." She said, "I have now. I'm a slightly different midwife." And I think that's the thing. You think you understand, and you can do as much as you can, but you've got to live it.

(23:49):

So sometimes... And again, it's really specific. It's really subjective to the person. Some people want to connect with people. When I was going through my cancer, I actually didn't want to hear anything about cancer.

(24:01):

So, what happens, it's a bit like seeing a red car and you're going to buy one, and then every car down the street seems to be the red car that you're going to buy. So once I knew I had cancer, every advert... There's still a tune on one of the charity adverts on the TV. And when I hear it, I'm like, "I don't want to hear that." And yet it's a charity and it's all doing good.

(24:19):

So I think just be aware. If it triggers you, cut yourself away from it. And nothing is wrong. There is no wrong way to handle cancer. That's what I think everybody needs to know, is do it your way. And if you're somebody that's helping somebody, just ask them. Say, "How do you want to do this?"

(24:37):

And sometimes as well, if you're offering to help, I found people would say, "If you need anything, ask." Asking actually specifically is quite hard. But the people that really helped me, the person said, "I've just made two lots of lasagna. I'm going to drop one off in an hour." They looked after Eddie. That was quite good. I didn't have to worry about him. They said, "We're going to feed Eddie. If you don't want to eat, that's fine. But there's some food there."

(25:04):

Somebody came around for a cup of coffee one day, she said, "I'm coming, and I'm bringing three girls so you don't have to chat too much. And we're all bringing our own coffee so Eddie doesn't have to get up and do anything." So sometimes it's just doing stuff that makes life easier for somebody. But really, it just boils down to listening. Listen to what they want. I'd hate people to think my story is the right way to do it. It was my way of doing it. And I'm pretty vocal that, I'm kindly blunt, I will tell people if I don't like it. Or I think my eyes roll sometimes. It's the giveaway, and they sort of go to the back of my head, I think.

(25:38):

Somebody one day said to me, "Keep your pecker up." And in the UK I think that means keep smiling. And I was like, "You try smiling." And I think I was on number 14 of 16 weekly chemotherapy. I was like, "You try smiling when chemotherapy knocks you out for 10 days and I'm having it every seven days." So, you just have to be a little bit careful and if somebody does roll your eyes go, "What should I say instead?"

Matt Feret (26:04):

You said there's no wrong way to do it. And I've personally been there when I've been on a group text, or my wife and they've said, "So-and-so has cancer." It is obviously a trauma for the person and their family. And then there is I think a sense, or at least there has been a sense of, "Oh gosh, what do I do?"

And you're right, the default mechanism is, "If you ever need anything, let me know." And you don't know how much to push or how invasive you are. If it's a very close friend, that's a different thing. If it's people that you go to school plays together, they're the parents, their kids are in the play, you go, "Hello, how are you doing?" Or you go to someone's house and a party and there's 20 people there, and you've seen them. They're friends but they're acquaintances.

If they're not close and they're acquaintances, I know you've already said a little bit of this, but what is the right way? Or what's the most helpful way, when you're not necessarily best friends but you do want to help but don't know how? What's your advice or your experience for people in that scenario trying to say, "I feel for you, I'm empathizing, I don't know what to do. "What's your advice, at least from your perspective, for those folks?

Helen Bullen (27:20):

Well, you probably could say that to somebody. "I'm empathizing and I don't know what to do. Tell me if there's anything specific." But for me, actually, you'll probably find most people, if you're on the outer skirt of the friendship group, the closer friends are already in there doing the stuff they need to do.

(27:40):

So for me, the people that really helped, the people that sent me a message. And they worked out that when you have chemotherapy... Day one, I used to get a lot of messages when I had it. And actually day one, it's okay. The anti-anti sickness stuff these days is great. You don't really feel that ill. You might feel a bit drowsy, a bit odd, but you don't feel terrible. But what chemo does is it destroys the fast-growing cells because that's what cancer is. It's cells that are multiplying really fast.

(28:08):

But when you have chemo, it not only does the cancer cells, hopefully. It's also doing all the other fast-growing cells. So hence you lose your hair, your nails go. But you get mouth ulcers, you get bowel problems. I mean the side effects are horrible, but they don't come on until about day three.

(28:25):

So the really cool people were the people that suss that out. And I'd get a message on day three, day four, day five, "How are you doing? Is it terrible? Do you do want a cold drink dropped off? What do you want?" And people would say on day one, one of the worst things that they would say to me... And please, I only think this is worse because I've been through it. I think if anybody's listening, don't think, "I might have said that" because I think I've said all these things to people. But the worst things people did was say, "Another one done."

(28:51):

Now I had 16 chemotherapy sessions and 12 of those were weekly. That was intense. So another one done on the first day was not done, because I had five or six days, normally six, nearly even seven. Normally when I was still going into chemo, I was still short of breath because it affects your blood cells, your white blood cells. It destroys your red blood cells. Everything that's fast growing.

(29:17):

So to say, "Another one ticked off." It's like, "I've got another five days of this, you have no idea." And that's what I did in the book is I write about how I'm feeling on the days of chemo, because I wanted to educate people, because why should people know? But actually, it's very easy, isn't it, to say, "You're going in for chemo today. Oh good, how are you feeling?" And then forget about you until you go for the next one. And I think actually, it's about day four I could do with a bit of cheering on, because today, I actually can't even get out and move. My red blood cells are so low that I may have to go in for a blood transfusion. There are all sorts of things that happen, you're out of breath. It suddenly kicks in and you're like, "Actually day one was a breeze."

(29:59):

So, I think it's just maybe being in contact, sending a little message, and doing it for... One friend sent me flowers every month. She got a subscription going. So every month, I had flowers arrive with a little message from her. Perfect.

(30:12):

Another friend, every time I went to chemo on day three or four, or normally both, she'd say, "How you doing today? Tell me honestly. And if you want something I can pop it over." That was really nice. Somebody sent me cards. Somebody in America sent me cards saying, "I'm really proud of you." I quite like that. I think I reverted to a child. I was like, "Well, you're proud of me." But again, that could trigger somebody else. So it's not necessarily right. I just felt like it was my mum talking to me again, "I'm proud of you." Whereas all my mum said to me was, "My friend is sick. She's got it and she's fine." I went, "Okay."

(30:47):

Because people tell you that a lot as well. They try and tell you stories of other people they know that have got cancer that made it through fine. And that is great. But when you're in a place that you don't know, it's quite hard to listen to those stories. All the worst one was, "My aunt had that, and she died." I was like, "Thanks." But I laughed at that one. That one was quite humorous really.

Matt Feret (31:08):

In the dark days and the times when you were alone, or even with your husband, did you go through what if? "What if I don't come out on the other side of this alive?" Did you do end of life planning? What was that process like? The not so, I guess proactive side. I mean I guess it's proactive, but I'll revert back to the original line of questioning. What did you do? I mean, there's this optimism. And then there's, this could happen, and it could happen very quickly. How did you handle that and those emotions?

Helen Bullen (31:46):

Yeah, I mean I did have some really black days, and I wrote about it in the book. People say in the book that they're laughing one minute, crying the next, and then going, "Oh my goodness." I had really dark days.

(31:56):

Normally actually when I was going through the chemo on about day four or five, I'd felt so ill and I was a bit like, "Is this worth it?" And I wouldn't say I was suicidal, but I used to think this is me. So I thought I have life insurance, and if you take your own life, they will not pay out on it. I mean that's not somebody that is suicidal because you wouldn't think those thoughts. But that went through my head. I was like, "I've paid all these years into my life insurance. If I go, my family are damn well going to have a lot of money." And my kids were something I thought about as well. They're grown up, but I was like, "I can't be sad for my kids." So, I tried to keep that bit private.

(32:37):

I would say my poor husband saw it all. I mean he saw it. And I was at a talk last night and I did say to him, "If you really need to know what it was like, ask Eddie." He just went, "I don't think I can tell the whole story."

(32:49):

But I did have dark moments. And I got more why me. And I write on those days, almost I felt like I was selfish, and that was the wrong thing to say. I'd say, "Why me? Why did it happen to me?"

(33:03):

And I used to go to the hospital. And it's typical of a hospital on the outskirts because you're not allowed to smoke inside, there's everybody in their hospital robes, even staff having a cigarette. And I would get really angry with that to the point that we'd drive around, and Eddie would say, "Please make sure the windows are shut." I'd be like, "You're killing yourselves. I haven't done anything, and I'm going through this."

(33:24):

Which wasn't really very rational, but there were the times that I didn't really like myself. I wasn't quite me. Normally I'm quite like, "Do what you want to do but don't involve me. And if you're not going to be healthy, don't involve me in it," type thing. So, I think more, I felt sorry for myself.

(33:42):

But I remember reading something once and it said, "Let yourself have a breakdown, but do it for five or 10 minutes or do it for half a day." And I came up with a quote years ago for my business group, and I'm going to give you a cleaner version. It's, "Negativity feels awful." Obviously, I was going to do the shit word, but, "Negativity feels awful. It will never make anything better, so don't do it." And although that's really simple, actually that always has helped me. It's like, "Well I could be really miserable over here. Or if this is going to be the end of my life, I may as well enjoy, I may as well try and get some joy out of what I'm doing, because there's no point lying in a place feeling terrible."

(34:27):

And I would say coming back to my medical background, if somebody feels really that bad and terrible, please see your GP, if you're in a black place you can't get out of. That is not where I was. I was in a place where I could say, "Right come on, get your butt up." Even if we just go out the door and sit on the wall at the end of my garden, I'm just going to get some fresh air, and I'm going to listen to some good music.

(34:47):

And I don't mean business either. If something goes wrong, I'm more likely to close my computer down and go for a walk down the road and come back. And by then my head has settled and I can sort the problem out, rather than somebody who wants to throw their computer. I know I spoke earlier with you about your computer. You want to throw it, but that's never going to make it better. It's just going to break the computer.

(35:10):

So, I think I had a lot of that. And I definitely worked through my own principles of looking after myself, believing in myself. That was the smiling in the mirror. Learning about what I was doing. What did chemo do and how could I alleviate it? And I found some research that said exercise would help it. Now whether that research, I didn't really care at that time if it was good research. I figured it wasn't going to hurt me. So, every day I was going to go for a walk, and I got some of these walking poles, and I would just get out the door and try.

(35:38):

And I had a little route that would be either, I think it was about a mile, but I could tip off at any point down little roads and make it shorter. So, if I was like, "Today isn't the day." And there was also a little brick wall that I could sit on as well at one point that I could just have a little rest. So, I dread to think what those people in that house must have thought. I should go past again and ask them, "Why were you sitting on our wall?"

(36:01):

But even one day I went on... I filmed this on my social media, and I was in a park because I used to wake up really early. And I went to this park, and it had one of those zip slides. Now you are probably imagining a really high zip slide, but it was like a zip slide for six-year-olds. And I sat on a swing first, but I thought, "I'm going to get on that. I'm going to get on it." And I videoed myself coming off it. The funniest thing is I can't get off the thing while I'm videoing it. So I nearly fall off. But that made me feel good.

(36:27):

So yeah, I don't know, I think it's just trying to live life, and we should all do that. You shouldn't need a diagnosis to do it. None of us know what's around the corner. You just don't know what's going to happen. You don't know who you're going to see again or not see again.

(36:41):

So, I definitely now see more of my friends than I used to. I make an effort to meet up with people that may be with me once a year. And I think, "Just call them, go and meet them. Send them a letter, do something."

(36:54):

Because I think that woke me up a little bit. Sometimes I think I was getting through life, not living my life, but I'm now milking it. So I'm now telling my husband, we've been to Paris just recently, because I've never been to Paris. I'm coming to New York next week, and there is a program in this country that used to have a van. It was like a market trader, and it was New York, Paris, and then Peckham.

(37:20):

Well Peckham, it's not so much now, but it used to be quite an unsavory place in London. So apparently, I've got to go to Peckham as well. So, I've been to New York, Paris, and Peckham. So we do laugh about that, but I keep saying to him, "We need to do another holiday because I'm trying to live life." And he's like, "Okay, okay, we'll do another holiday." But there you go, I think everybody should do that.

Matt Feret (37:40):

So 2021 was the diagnosis. How many months, how many years of chemo? And then clean bill of health, when did that happen? And what's your schedule now for mammograms and self-care and going to your primary care physician or your GP in the UK? What's that just from a timeline?

Helen Bullen (38:05):

So my timeline from seeing the medics, every six months I have to go in for an infusion. I haven't got the hormonal type of breast cancer, so I don't have to have the hormones afterwards, but I do have to have something to keep my bones strong. So, I have to go in for an infusion. Back to the chemo ward unfortunately. And I do that every six months for three years.

(38:24):

I finished my chemotherapy. So, 2021, I was diagnosed in June, started my chemo in the August. And as I said, I had 20 weeks of almost weekly chemo. That's quite unheard of. Normally, people have three weeks between. But my oncologist had a load of us on it, and two of us managed to get through.

(38:40):

And I think he's quite forward-thinking. And I think he said, "If you can manage this, this is your best chance." So, I'm competitive. I was like, "Right, I'm giving it my best shot. I will do everything I can." And that doesn't necessarily mean that's why it happened. That's just the mentality I put.

(38:54):

And then Christmas Eve in 2021 was my last chemo. So, I'm sitting there in my Christmas hat looking like a weirdo. I'm bald. The great chance to wear the perfect hat was to wear my Father Christmas hat. So, I do that, that's my last chemo.

(39:09):

And then, in February I had to have a mastectomy. I still didn't know as I was cancer free because they had to do the mastectomy to then test the cells. And I could have gone on to have radiotherapy, but I was so fortunate that the chemo that I had had, got rid of it. All my lymph nodes were completely removed, the breast tissue was clear, and it was a surprise to everybody. I was really, really fortunate. The recurrence of... I'm going to do it the other way around actually.

(39:36):

The likelihood of me not getting my cancer back, it's quite a high rate unfortunately for the coming back. But 60% is not going to come back, and I like to do that one. But triple-negative is quite an aggressive breast cancer. So, there is a 40%, and I feel like I have a shadow behind me. And I always like the sunrise. So, I always think I keep the sun in front, keep that shadow behind me, but it's lurking.

(40:01):

And even though I think it was about two and a half weeks ago, I had a little swelling on my scar. And I was taken in straight away. There was a biopsy team drawn up. I started to panic. Again, I went in thinking, "This will be fine," without Eddie. I haven't learned my lesson. I went again without Eddie thinking, "Be nothing." And actually, it was nothing. But two and a half hours later and after test. That was a little bit scary. But the team is there. I can contact them any time.

(40:26):

And mammograms, I now have to go every year for a mammogram. And I also go for examinations. Because the scar tissue, although they think they've cleared all the cells, obviously it's quite hard to do that. So, the scar tissue area is where it could come back.

(40:42):

And then, miracle of miracles, they're so clever that they can use my... And I was told I have plenty. They could use my belly fat, my stomach fat to recreate another boob. So, Agnes probably might be... Haven't quite decided. In November, she may be recreated. And I get a tummy tuck. And see again, I can't find it funny. She got hold of my belly, shook it, and went to her consultant that was with her and said, "Yep, she has plenty." And I was a bit like, "That's rude. Anyway, carry on." And she goes, "And while we're there you split her abdominal muscles. We'll mend that, probably through childbirth." She goes, "You've got a grade two droop on the other one. We'll lift that one." And I was like, "Well thanks for that. I think you've given me an okay and I can have it done." It was a bit like that, old lady sort of stuff.

(41:32):

Anyway, you may never recognize me after November. I may come back looking, I don't know. I'm hoping it's going to be like Bionic Woman. But I think I'm going to go through it because I'm too lazy to wear prosthetics and stuff. And yeah, we'll see. I think it's going to be quite a rigorous operation; hence I'm still pausing, and I can draw out any time. But November seems to be the date at the moment.

Matt Feret (41:55):

You've used the word Agnes twice, and I haven't asked you directly about it. I'm going to. But before I do, I want to touch one last time on. So, you explained how people were helping, and calling you up, and making your husband dinner, and being proactive. And not just necessarily saying, "Hey, what can I do?" Your message I think was loud and clear, "Do something. It could be the wrong thing, but go do something, whatever that is." But this is now something you have to do, and you just had a scare recently.

(42:30):

Have those people fallen off once the chemo is done and you've gotten a clean bill of health? Or have you found that people have stayed on longer? And what's your recommendation or experience around that? Because I would think it's very easy to be like, "Okay, clean bill of health, everything's done." Not necessarily the case.

Helen Bullen (42:50):

Yeah, that is a really good question actually. Because there's certain people that I actually listed in the back of the book that contacted me regularly during my chemo. They're the ones that on the third and fourth day, the ones that still check in on me. It's interesting. And then I have other friends that’ve sort of gone, "Oh phew, thank goodness."

(43:08):

Especially now because I've got my hair back. It's not as long as it used to be. And I've definitely got the chemo curl going on. But I've got my hair back and I look fairly much like Helen. I've lost a lot of weight. I can feel them sighing with relief that I don't have to be any topic of conversation. And then I have people say flippant things when I say I'm back in hospital next week. They go, "Well why would you be back?" "Well, because I'm being monitored."

(43:35):

And actually again, I was at an event last night and one of my friends came. She said, "I did not know that your type of cancer has such a high recurrence rate, I didn't realize. And I didn't realize that you would be worrying about it."

(43:47):

And some of that may be, because I do portray that everything's okay, so some of that's my fault. I don't want people to feel sorry for me, or pity me, or worry about me. But I do appreciate people that just check in, "How you doing? How's it going? All okay? When's your next check? Great." I quite like that.

(44:05):

And again, it is subjective. I want to keep saying that because somebody might say, "Don't keep checking on me. I just don't want to talk about it." I'm glad I don't look like what I would call... I felt I looked like a cancer patient when I was bald and when I was overweight. I felt I couldn't wear the clothes I wanted to wear. I like being back to being Helen again, which is lovely, with my cheesy smile still. But it is lovely to know that people are thinking of you.

(44:30):

And my husband, he's really good. Because he had chemotherapy, and he had it in '89 when you had it overnight and you were sick all day the next day. I mean, he didn't have all the meds that I had. It's great now, really, what they can do. And I remember saying to him, well probably three weeks ago, I said, "I'm so worried about this." I think I was in tears, and he said, "It's normal." I said, "But I'm two years since I was diagnosed, just over a year since I've been clear. I should be okay now." And he said, "It's going to take years."

(44:59):

That somehow was quite releasing that that was okay to still be worried. And maybe it's a good thing. I feel if I'm a little bit worried, then I'm going to do all the self-care checks, and I'm going to do the breast examination.

(45:13):

So, we spoke about me having a mammogram every month, but maybe a reminder here for everybody. I do it twice a week, I always do it on a Monday or a Wednesday. Because I think if I find anything, I can go and see the doctor. I never do it on a Friday or the weekend. I do a self-examination. And that could be for men, it could be testicles. It could be women; it could be breasts. It could be your neck. If you feel something's not right, go and get it checked. Don't wait.

(45:39):

And I felt that the last time something came up, but three weeks ago. I was like, "I don't really want to tell them." And I was like, "For heaven's sake, tell them." Because you sort of don't want to know the outcome, but actually, the outcome could be so much better. And it's likely to be nothing. Or if it's found early, your chances increase immensely.

(46:00):

My chances of survival with stage three triple-negative where it'd gone into my lymph nodes were 75, maybe it was 85%, it was high. If it had gone anywhere else in my body, if it had gone longer, it dropped to 12% with triple-negative. I made an old mistake of Googling when I first got it and that was a bad move.

(46:18):

So, I think for everybody is if something's not right, whether it be bowel, bladder, how you feel, tiredness, how something looks, the shape of something, a rash, whatever, just go and get it checked. And if you get it checked and they say it's nothing and you still think it's something, go again.

(46:36):

That comes from me being an osteopath. I sometimes had patients that would come, and somebody had told them it was nothing. And I'd say, "I just need you to have another check." Just get a second pair of eyes. We're all human, and we don't always spot things. And I think the worst that can happen is somebody goes, "Oh no, no, you're fine," twice. How great is that? But we all worry, don't we? "I'm going to be wasting somebody's time." No, you're not. No, you're not going to be wasting their time. That is their job, and they're going to be thankful.

(47:02):

I know when I had people coming in with pathologies when I was an osteopath, I was thankful when I thought it wasn't a broken bone. It wasn't like, "Fancy coming in to see me. It's nothing." I'd be like, "Oh great, we can treat that." So yeah, I think probably that would be my advice.

Matt Feret (47:18):

It sounds like solid advice. We're going to get to the title of your book, because you've mentioned pieces of it. So, Agnes, Bea, Cancer and Me. How did you come up with that title?

Helen Bullen (47:32):

I can be quite creative sometimes. And when I am, I wake up with things in my head. I did it with my clinic name, which was called Fine Fettle, and I did it with this book. I woke up in the middle of the night and thought, "I'm going to name my boobs and they're going to be boobs, and they're going to be called Agnes and Bea, A and B." And then I was like, "Agnes, Bea, Cancer and Me." It sort of went, and I have no idea where that came from. I am still waiting for my number one hit song from waking up, but that has not happened. But I feel it should. But I do do that, and I'm one of those people that I will write it on my phone or write it down because I will have lost it by the morning.

(48:05):

So, in the morning I was like, "Yeah, Agnes. Agony, Agnes. And I hate Agnes because she had cancer." And it made me separate a body part from me. I was angry. Throughout the book, I'm angry with Agnes because she's done her cell division incorrectly and I'm mad at her. And then she's passed on those bad calculations to Larry the lymph node, and he's doing the same thing, and it's all gone bad. And I somehow enjoyed disconnecting it from me.

(48:31):

And then I'd got Bea who actually hadn't been my favorite boob. I didn't know I had favorites, but A was B. And I was like suddenly like, "I'm really sorry, Bea, really sorry. I really appreciate you now, even if you've got a lot of droop and it needs sorting." So yeah, I know. I can't help myself.

(48:50):

A cancer journey everybody thinks should be really, really sad, and there is a lot of sadness about it. But I think sometimes, you've just got to build on something. And for me, it was that humor. And to be angry with Agnes was brilliant. I had somebody to target my anger at, and I did. I remember once, there's one bit in the book and I say, "Going off in the camper van. Unfortunately, we have to take Agnes with us, but she is not invited," because she's still attached to me at that point. And I'm the only person I think can say, I've literally got a friend, was a friend, off my chest. Agnes is off my chest, she's gone.

(49:23):

So yeah, that's why I came up with the title. And I've put in kindly blunt blocks because I like to say things how they are. So, there's advice in the book as well. So it's not just my story. I wanted to remind people to do their checks. I wanted people to check in on their friends if they got cancer. I wanted people to know what to say if they didn't know what to say. Saying something is better than saying nothing. So yeah, that's how the book came about really.

(49:50):

And somebody asked me last night, "When did you decide to write the book?" It was early on. I've already written one book, and I'd written the day I'd been in for the checks the first day when I had all the biopsies. And I wrote in that, "They put titanium markers in Agnes."

(50:06):

And all I remember thinking there's that song Titanium. "That'll be funny. I'll write that in." And then that was it. And then, because I have Scrivener where I write, I just kept writing in there. And then the book was just... In fact, by the time I got to my editor, she was like, "How many words?" I was like, "Okay, we can take some of that out."

(50:24):

And there was only one bit we took out. And the editor said to me, Helen, "Your audience are reading, you are not angry with them." And this must have been a really bad day. And I'd written it, and I was angry with the world. So, we just took that bit out. Just took it out. Cut it, deleted it, never to be seen again. Yeah, that must have been a pretty black day. I was like, "And another thing, and another thing." So yeah, hopefully the book doesn't come across like that. Most people say it's easy to read, and their complaint is they can't put it down. So that makes me very happy.

Matt Feret (50:54):

That's very nice. And it sounds like maybe the writing along your journey was therapeutic.

Helen Bullen (50:59):

It was. It was. And I would probably say that's something for somebody to do. You don't have to produce it into a book, book journal. And actually sometimes, I read bits of the book, and I'm reading it right now on TikTok. I've become this sort of big thing on, who knew? TikTok for goodness' sake. Anyway, they seem to like my stuff. I read the book, and when I read it I'm like, "Oh wow, I remember those emotions," because you forget. And sometimes it's a good thing to forget. But I also quite like being reminded that I'm where I am now, and I've got past that bit, and how fortunate I am.

(51:27):

Because I feel I'm very lucky the outcome I had. Because I think cancer's a bit like, "Eeny, meeny, miny, you are going to be okay. Eeny, meeny, miny, you are not this." I feel it's a bit like that. It's very random. I just lucked out. I didn't do anything any different to anybody else would do. I just got lucky, and I'm just going to touch wood. And if my time comes, my time comes. But I'm busy getting Eddie to book me as many holidays as possible in that time.

Matt Feret (51:53):

I think that's a great plan. Listen, thank you very much for sharing your story. Not only about your personal story, but also giving advice to other people. Friends, family that are there who want to support you, maybe don't know how. I really appreciate all the time you've spent. What questions or topics that I should have asked you about that I didn't?

Helen Bullen (52:16):

I think you've nailed it. I think it was a great interview, Matt. I think great interview. No, I think we've covered it all. I think if everybody can go and do their self-checks, if everybody goes when they think there's something not quite right... And that's all it needs to be a feeling of not quite right if they go and do that. And if they reach out to somebody in some way, that somebody's got a diagnosis that they find a bit uncomfortable, then our work is done, I feel.

Matt Feret (52:43):

Helen, thank you very much.

Helen Bullen (52:45):

Thank you for having me.

Matt Feret (52:47):

Helen, thank you. If you liked this episode, please follow, like, subscribe, and rate the show. Make sure to hit The Matt Feret Show website for links and show notes. Until next time, to your wealth, wisdom, and wellness, I'm Matt Feret, and thanks for tuning in.

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