Clare Stafford is one of Lauren’s oldest friends. Hailing from Melbourne, Australia (by way of Irish-born parents), Clare has built a career as a social justice advocate and lawyer. Having worked in refugee camps in Greece and campaigned for indigenous rights in Australia, her focus has always been on immigration, native rights, gender equality, and climate justice. She is an avid music fan, traveling the globe to attend festivals and visit friends far and wide. In 2017, shortly after turning 33 years old and subsequently losing her mother to lung cancer, Clare herself was diagnosed with cancer in her left breast. She has now survived this cancer twice, and has been told by her Western medical team that a third occurrence and metastasis would mean she’d be treated as terminal. When she discovered integrative medicine, her doctors laughed (in a good way!) at these claims. She sat down with Lauren in July 2019 to discuss her recent trip to an integrative medicine center run by Cuban doctors in Colombia (Instituto Medico Cubano) – and how the holistic treatments she received there have changed her perspective on cancer – and on chronic illness.
Tune in as Clare shares…
- that she knew something was wrong 18 months prior to being diagnosed with estrogen-positive breast cancer – and had ECGs that showed nothing was wrong despite pain near her heart
- that she finally put her foot down and was given an ultrasound, which showed two tumors right in the area where she had been experiencing pain
- the interesting connection between the brain and our experience of pain – because Clare’s tumor was not of a kind that typically causes pain, and yet the alarm systems in her body were somehow alerted that something wasn’t right
- her perspective change: that cancer is not a death sentence, but a chronic illness – and she will continue to manage its symptoms for the rest of her life
- that she was originally told she wouldn’t need chemo or radiation
- her process of discovery: ultrasound, followed by two lumpectomies, and a mastectomy on the left side – though she opted to have both breasts removed and reconstructed (28% chance of it coming back on the right side)
- that there was not much medical follow-up after her surgery
- that she lived a “bad luck broken record” for a while – she kept getting infections and ending up back in hospital after her double mastectomy
- that she started having abdominal pains and was continually turned away – and it turned out, following laparoscopy to make the determination, the cancer drug she’d been on had likely given her endometriosis
- that 12 months to the day from her double mastectomy, she was diagnosed again with breast cancer
- that she endured 3 months of chemotherapy (2 types), and maximum radiation for 5 weeks
- that she is now on injectable cancer drugs that push her body into medically-induced menopause, as well as an aromatase inhibitor (i.e., stops the production of estrogen in post-menopausal women)
- that she froze her eggs before chemo and radiation – and this procedure was offered to her at no cost, without insurance, through the Australian medical system
- that she experimented with diet and Chinese herbs while being treated for her first cancer diagnosis
- that after her second cancer and endometriosis diagnoses, she began to explore integrative medicine and found NIIM
- that during chemo and radiation, she used scalp cooling to keep (most of!) her hair
- that she used integrative treatments to complement her chemo and radiation
- that her friends and family threw her a party – The Big C – to raise money for her treatment at NIIM, as well as abroad
- the reasons she chose to travel to Colombia for additional integrative treatment following chemo and radiation
- some of the treatments she went through at Instituto Medico Cubano – including vitamin drips, hyperbaric oxygen, immunotherapy (targeted therapy), and regressive therapy
- that her integrative medicine doctor’s third question to her upon arrival in Colombia was: “What is your relationship with your mother?” – and she posits there is a direct connection between Clare’s cancer diagnosis and her mother’s passing
- a discussion of Dr. Hamer’s findings on chronic illness and disease
- that she realized after her stay in Cali that she hadn’t looked down the barrel of her trauma – and that this was the next step in her healing work
- that she had full genomic mapping done in Cali – which will show her predispositions to pathological response to certain treatments and medications, among other things
- that she’s found a renewed interest in meditation, and was recently introduced to Dr. Joe Dispenza’s work
- why she is her own advocate
This episode is also sponsored by Embr Labs, creators of the Embr Wave.
Get $30 off your personal thermostat device with code INVISIBLE at checkout!
Every purchase you make with the above codes supports Uninvisible Pod’s ongoing mission.
Lauren: All right guys, thank you so much for joining me. I am here today with one of my very dear friends. Her name is Clare Stafford. Clare, thanks for joining us.
Clare: Thank you for allowing me to be here.
Lauren: It’s such a pleasure! We were very lucky because Clare is based in Australia, but she was traveling and stopped through LA, so we decided we'd make some time to have her on the show. Because I've been wanting to talk to her for a while now, because we’ve had lots of chats about what's been going on. So, why don't we jump right into it? Clare, can you tell us when and how you first realized you were sick?
I was first diagnosed with estrogen positive breast cancer when I was 33 years old, in 2017.
However, I first realized there was something wrong about 18 months prior to that. I was going through a tough time because my mother had just been diagnosed with lung cancer that had already spread to her bones.
Lauren: Metastasizing. The technical term is that it had metastasized, right?
Clare: That’s right.
Lauren: So if we refer to that later, that's what it is.
Clare: Yes. And so that was a quite a shock, because she was otherwise quite a healthy 62-year-old woman, and she hadn't smoked for 23 years. Around that time, I started to feel chest pain, what I thought was in the area of my heart. So I went to the GP and explained the symptoms, and they did an ECG to test my heart, which came back completely normal. And the GP at the time said to me that she thought, due to my mother's terminal diagnosis, I was experiencing stress that was causing chest pains — and that was quite common and not to worry. Anyway, unfortunately my mother passed away relatively soon after that.
Lauren: And and you were really close with her.
Clare: Yes. Nothing really prepares you for those things. But a few months later … I'd moved cities, due to her illness … and I attended another GP because I was still feeling this unusual pain in what I thought was my heart. And it was the fact that it felt like it was my heart that really concerned me, because you think, well, that's a vital organ. Get that checked out. So I attended another GP in Melbourne. And his advice was, well, you're experiencing grief. You've already had an ECG, and that was normal. Grief causes pain in the chest. So that's just normal, and carry on. So anyway, I went away from that.
Lauren: Let's just say … to me, that doesn't sound normal. You're telling him that you're in pain, and he’s, like, Oh, well, tough sh*t. Basically.
Clare: It was a bit like that. That's why I went back a second time, because I thought … this is an unusual feeling.
Lauren: And it sort of minimizes the experience of your grief as well, to just write it off to grief and not take a deeper look, as well. I don't know.
Clare: That’s true. He thought he would have done an ECG, but that had been done … Anyway, I went traveling for a while and did some volunteering in the year after that. And on my return from a few months in Europe, I still had this niggling feeling in my heart and I thought, No, I'm going back about this. I went back to the same GP. And I said, this is still annoying me, and I put my foot down — and I was offered an ultrasound. And within five days, I was diagnosed with breast cancer and two tumors were found right in the area where I'd been feeling the pain.
Clare: I mean, it wasn't even pain, it was just an unusual feeling. Those tumors are not ordinarily supposed to cause pain. So it's interesting … perspectives you might have on the brain creating a pain to alert the body …
Lauren: And you had an oncologist mention that at one point, didn’t you?
Clare: I did, yeah, and that was reassuring.
Lauren: And validating when you get the diagnosis … when it's like, hey, it is a major thing. We thought there was something major going on with this discomfort you were having. And then to have the validation of the diagnosis.
Clare: Yeah, that's right.
I think by the time I was on the table, having the ultrasound, I knew. I knew there was something. I just knew.
And so I wasn't actually that surprised.
Lauren: Yeah. But that must have been a shock. Emotionally speaking, going from losing your mom to cancer, and then being diagnosed with it yourself. Did you ever jump to the mortality thing right away? Because we were talking about this earlier today, that when we hear words like “cancer”, we automatically jump to a death sentence. But actually — and we'll talk about this as we discuss this more — you have to shift your perspective into thinking of it as a chronic illness and something that you're going to manage for the rest of your life, right? That you're going to manage, to avoid growing tumors again, because you have a predisposition to them.
Clare: Definitely. I think at the time, for me … it was only about a year after my mum had passed away and I was still so grief-stricken that I didn't really think too much about the cancer diagnosis. I also think it's a lot more difficult to watch someone you love be diagnosed with the C-word or anything else that could be terminal than when when it's yourself and you feel you have a bit more control. For me, it wasn't as scary. People have different experiences. And it also wasn't as scary because they told me that I didn't need to have chemotherapy or radiation.
I was always scared by chemotherapy, without ever really having known what it was in the past.
Lauren: Your mum had had chemo, right?
Clare: She had, yeah. But that hadn't worked for her, unfortunately. So, I had a lumpectomy to remove the two tumors and the surrounding pre-cancerous cells. They didn’t get the circumference. So I had to have a second one of those. And following that, they still didn't get all the pre-cancerous cells — which was when I was advised to have a mastectomy on the left side.
I elected to have a double mastectomy, because I was told that I had a 28% chance of it coming back in the right side.
After the double mastectomy, I was put on a hormone-regulating drug very common for breast cancer. And pretty much, checked out of the hospital. That was it.
Lauren: They weren’t, like, “We'll see you in two weeks for your follow-up. We'll see you in three months for follow-up ultrasound.” There was none of that?
Clare: I was put on to exercise programs, and Pink Pilates, and mindfulness, and lots of great supportive cancer community free programs. But from a medical perspective, they sort of told me to crack on with the rest of my life then. And, you know, I did.
Lauren: You were basically sent on your way and left to your own devices after the double mastectomy?
Lauren: You’d had the breast replaced, as well, you'd had cosmetic surgery?
Clare: Yeah, I had some reconstruction done as well.
Lauren: So at this point, if someone didn't know you, they wouldn't have known that you had anything going on?
Clare: Gosh, no. I didn't look unwell.
Lauren: And you didn't really lose a lot of hair? We’ll get into that. That hasn't happened yet. I’m jumping ahead!
Clare: That’s right. I mean, I looked normal. But I was unlucky after that. I ended up back in hospital with an infection here, and this and that there.
I kept saying I was kind of like the bad luck broken record for a while.
I suffered really bad abdominal pains for months, and I kept going back thinking it could be related; it seemed like — how could it not be related to have these pains so soon after the surgery and the diagnosis?
Lauren: And knowing that it was a hormonally-focused cancer as well, right?
Clare: Yeah. This went on for months.
And I was put on a variety of painkillers, and sent to psychology and made to feel a little hysterical, to be honest — before I was diagnosed with endometriosis.
Lauren: Okay, so when you told me this part of your story, I was, like: Oh, hell, no! So, you went to several doctors. You were being seen at one of the leading cancer care facilities in Australia, and you went to your doctors there and said, “I've got these abdominal pains.” And you kept going back about abdominal pains, just like you went saying, “There's something weird in my chest. There's something weird in my heart.”
Lauren: You knew before everyone else did because you know your body better than anyone else. So you kept going back. And one doctor said, “Go see a therapist.”
Lauren: And so you were written off as hysterical in that way. And finally, what happened?
Clare: Well, I got bounced around between the cancer hospital and the women's hospital. No one seemed to want to take too much responsibility for it. Until finally, I complained so much of the pain … which was debilitating. I was hospitalized over Christmas, into emergency, with the pain. And finally, I had a laparoscopy, keyhole surgery — and I had endometriosis.
As it happened, the cancer drug that I was on, the hormone-regulating drug, caused the endometriosis. But I hadn't been advised that that was a risk.
Lauren: Well, this is the thing with any of these drugs … everyone's going to have a different experience of them. It doesn't mean that it's going to cause everyone to have endometriosis.
Clare: Yeah, true.
Lauren: Certainly not a man. But the fact that you were given a drug that had serious side-effects and you were never advised of the side-effects by your medical team, or the possible side-effects. And wasn't it one of three different drugs that you could possibly take?
Clare: Yeah, there was another option. But it wasn't really offered to me as another option. I think, even after the diagnosis … that surgery happened at a different hospital, and I tried to inquire as to the relativeness to my drugs that I was taking, they were, like, “Oh, well, don’t worry about this now. Just worry about the cancer, and go back to that hospital.”
So I felt a bit like a ping pong patient …
… to use that term.
Lauren: No, we use that a lot with people with chronic illness, especially ones you can't see. Like endometriosis. It’s one of the biggest culprits. It's often the experience — and especially when you're female. A lot of us have a thing where we're not heard or understood at first; we’re written off as hysterical. You're sent to different doctors before someone will believe you. And of course, it isn't just that women have this experience.
Clare: No, it’s a very common drug to be given. And following the endometriosis …
Lauren: But also, I guess … sorry to cut you off … but there was no way for you to make a direct link between the drug causing the endometriosis and you getting the endometriosis, because you'd gone through so many other different medical procedures at that point, too, right? So there were no direct links; there was no way for you to sue the medical system, sue the drug company. Because there's no direct link that’s trackable.
Clare: That’s right. It certainly wasn't made clear to me. And if I was aware of that when I had the pains that matched those of endometriosis, I would have been able to connect the dots and advocate for myself at the time. But that took months of being in severe pain, and being subsequently on excessive amounts of painkillers, nerve medications. Mostly futile because they weren't targeting any of the causes. Which was frustrating for me.
Just after I had my laparoscopy — the very same week, and, as it happened, 12 months to the day since my double mastectomy surgery — I was diagnosed with a recurrence of breast cancer.
And that obviously happened while I was on the drug that was supposed to prevent the cancer from growing or recurring. And that recurrence also happened in my breast, despite the fact that I had silicone implants.
Lauren: How did you find it? Did you feel that there was something, or was it in a followup ultrasound or something?
Clare: No, I felt that there was a lump. As I mentioned, I'd sort of almost been signed out of the breast ward at that stage. And interestingly, the first time I had cancer and found the two tumors, there was no lump whatsoever. It was just that feeling that I had in my heart. And the tumors were so far from the surface that there was no way I could have felt them. I just had the feeling of something unusual. Whereas the second time, I could feel the lumps on the surface because they were being pushed up by the silicone implants. They were above that. So prior to that, I was sort of under the impression that if you have the chop, and if you make that decision …
Lauren: You’re good to go.
Clare: You're good to go.
I was just 34 years old when I had my second breast cancer diagnosis.
Lauren: Now when they give you the second diagnosis, they automatically put you at a later stage, don't they? Because they're already concerned that it's a recurrence.
Clare: Yeah, so I was told that it wasn’t an absolute diagnosis — that either it had been some cells they had missed during surgery that had grown back. Or it could have been a metastasis of something, which puts you at stage 4. And there was no way definitively of deciding which one of those that it was.
Lauren: But it also means that their treatment was going to be more aggressive, regardless.
Clare: Far more aggressive after that, because …
It’s very unusual for someone like myself to be diagnosed at 33 in the first place — when I'm not a carrier of the BRCA gene.
Lauren: Which you were tested for, because of all this. And your family's been tested.
Clare: That's right. I had no known predisposition to breast cancer. So 33 was young to get it, and to get it again at 34, 12 months to the day of the surgery, was unusual — and it was taken very seriously by the oncologists there in Melbourne. I was upped instantly to senior oncologists, and then ultimately given the full treatment.
Lauren: The chemo and the radiation.
Clare: Well, chemotherapy for the first three months, two types of chemotherapy at once. And then maximum radiation for a five-week period. And my drugs were changed; I was changed to a different type of hormone therapy, which only works in postmenopausal women. Which means, I take an injection every 28 days.
Lauren: We did it yesterday!
Clare: We did, Nurse Lauren! I take an injection every 28 days to put me into a medically-induced menopause, and that allows me to take another cancer drug which is an aromatase inhibitor.
Lauren: But before you did all of that, you had to freeze your eggs, didn't you?
Lauren: The idea being that if you want to have children in the future, you're going to have to harvest them now, while they're healthier, before the chemo and the radiation, right?
Clare: That’s right.
Lauren: So you had to go through that whole process. Which probably didn't seem like a big deal after the cancer and the endometriosis and everything, but is still quite a complicated and difficult process. So you went through that whole process, had your eggs harvested …
Clare: Say what?! (laughs) I suppose in the scheme of things, having children wasn't something at the top of my agenda to be thinking about.
Lauren: But they made you think about it, didn’t they?
Clare: Yeah, and look, it was great, because that was offered to me at no cost.
Lauren: Which is amazing.
Clare: And that's without insurance. So I have to be grateful for the level of care and what's available in Australia. And now, of course, that I've had all of the poison … I’m pleased to know I've got my 33-year-old eggs sitting in a freezer somewhere should I need to call on them.
Lauren: Well, that's the thing … you left the option open. Because you're now on this drug where you have to basically be in medically-induced menopause for four more years, right?
Clare: Five years in total, before they would technically refer to me as being in remission. Although that's a very fluid term, I'm sure you know; it's not really a definitive thing. And it varies a lot for types of cancer and what type of treatment you've had, and how that can be measured. So another four years in the menopause, and on the drugs, and, you know, hopefully, at the end of that, there's options …
Lauren: And you’ll be in the clear. So, one of the big reasons for your trip over here to the States — because you were stopping through en route elsewhere — was that you had started to explore integrative medicine, right? So in terms of the steps that you're taking to control your health from this point onwards, how did you get introduced to integrative medicine? What was the journey? I know you love that word. This is Clare's least favorite word, “journey” — when it comes to health issues! (laughs)
Clare: You’re putting me on the spot, Lauren! (laughs)
Lauren: But it's true! And I get it, because it can sound so contrived.
Clare: Yeah, I think that's probably why. I mean, each to their own.
Lauren: Each to their own, exactly. But tell me how that all materialized. You went from chemo and radiation, where you were also wearing that freezing skullcap to keep your hair — most of which you’ve kept, which is good. But how did that all play out?
Clare: Well, I think the first time I was diagnosed with cancer, I stayed positive. I tried a ketogenic diet and I rushed out and filled my fridge with organic vegetables that subsequently went off a week later!
Lauren: You weren't told to change your lifestyle?
Clare: No. Ultimately, I listened to the doctors at the cancer hospital in Melbourne, to the oncologists. It's a very impressive building with very impressive practitioners. And I deferred entirely to that orthodox Western medicine that was made available. I also felt like that's what the people around me were supporting me to do. Sure, I went and got some herbs from a Chinese doctor, and went organic this and that …
Lauren: I remember you doing that.
Clare: But ultimately I deferred to them, and …
I didn't really think outside of the box of that orthodox approach — because it seemed so impressive and it was a bit frightening to do so.
Whereas the second time I had a cancer diagnosis, so soon afterwards … it was a bit of a shock, and then I'd had the endometriosis episode in between … I sort of thought, something's got to change here.
Lauren: Which is pretty clever.
Clare: Well, “Fool me once, shame on you. Fool me twice, shame on me!” I had randomly been in a friend's wedding in Australia and overheard a woman discussing chemotherapy at the wedding, in the bathrooms. And I said hello and had a chat and she suggested to me, “Oh, if you’ve finished your treatments, you must go to see these doctors, these integrative medicine doctors. And you must get a circulating tumor cell test because otherwise you wouldn't really know if your treatments worked or not. It's great.” I'd never heard of this, and it sort of stuck in my mind. And then once I started the chemotherapy — because I didn't really think that there was an option not to, I thought it would be silly to choose not to — I started it. It was pretty horrific. I did the scalp cooling, which was very cold — but it is an option. And then I attended to some integrative doctors in Melbourne.
Lauren: You found NIIM, right?
Clare: Yeah, the National Institute of Integrative Medicine in Melbourne. It's not free like everything else; there is a cost that you incur. But immediately … I was having chemo at the time, and I remember I saw the GP there and I saw the naturopath there, and I got given a bunch of supplements to take, including the recommendation of CBD oil or medical marijuana.
And the very next cycle of chemo I had, just on the handful of natural supplements, the side-effects were far less aggressive. And I remember thinking to myself … gosh, why the hell didn't the oncologists tell me about these things that can make something so aggressive and painful, so much less aggressive and painful?
I mean, sure — there were a couple of things they mentioned. But these were sort of simple things. And I knew from that moment that I was on to a good thing with these people, and they were much more open. They explained to me, the GPs there, so much more about how cancer works. And I'd already had cancer for a year at this stage.
Lauren: They educated you as a patient.
Clare: I didn't really know anything about the science of it. Which sounds silly when I say it out loud on air!
Lauren: But I think that's really common. A lot of us, something happens and we don't know which way’s up. And something like cancer … you hear the word “cancer" and you think chemo and radiation. You don't really know, in general conversation or general knowledge … alternative treatments, necessarily. Because those are so wide and varying, I think. But also because that's just the standard orthodox Western medicine approach.
Clare: And most doctors, they're not encouraging you in that environment to go out and seek alternative treatment, and they warn that medicines can interfere and such. But I found that all the integrative practitioners were well educated, and they were cancer specialists, and super aware of what did or didn't interact, and they weren't going to put you on anything that did.
Lauren: Wasn't there some episode where you went there and they laughed about something … ? I love that story.
Clare: That's true. I've always asked a lot of questions at the hospital. And I've always been fortunate enough to bring great friends along with me who've supported me in asking those questions and taking those notes. When I was told I had to have the chemo and radiation and so on, I asked a lot of questions. And one of the main things I was concerned with was … okay, I'll do all your chemo. I've done all your surgery, and I'll do all your chemo and all your radiation and take all these drugs. And then my question was … and how will you measure after I am administered all that poison back to back, how will you measure if that has worked? If that's had an effect? And the answer was … well, we won't measure if it's worked.
Lauren: This is the answer from the oncologists.
Clare: “There's no way that we can measure if it works.” And I was shocked by that. And I said, “So it could come back, despite having all of this — at any time?” Which, at this stage, I knew it probably could since I’d had the double mastectomy and then had the cancer in my breast again. So I was shocked to hear that they said there’s a chance — I’m very high risk at 34 — that it could come back.
And if it did come back somewhere else in my body, a metastasis, I would be ultimately deemed a terminal patient. I would no longer be treated as a curable patient. I may receive treatments to lengthen my life. But basically, I had one foot in the grave.
Lauren: What does that do to your mindset? I can't even … I can't even imagine being told that.
Clare: Well, it's just that you’re going to walk around in fear that every time you have a pain in your knee, or a pain in your head, or a pain in your arm, that … oh, that's the cancer. It's spread. See you later. Your time’s up. When I explained to my integrative medicine GP at NIIM, that experience of asking those questions — and she's been a doctor for a number of years, very experienced and well traveled and [she’s] authored books, and so on — I explained that they told me that they would treat me as incurable and I would be terminal. And she actually just laughed in my face.
Lauren: I think that's fantastic. That's the best kind of laughing in your face you can have, right? (laughs)
Clare: She couldn't believe that they were telling me that. And while the integrative doctors never tried to sway me or convince me not to have the chemo or radiation — they never did that, they respected those choices — they just tried to supplement me with different things and offer me extra tests and points of view and educate me.
And they certainly made me realize that it’s one thing to listen to an expert's diagnosis, but it's really another thing to listen to their prognosis. And that was the day I gave up listening to the prognosis from the orthodox doctors, because it wasn't going to get me anywhere.
Lauren: Yeah, but a huge part of what you've gone through has been mindset. Again, we're going to get into that. But tell us more. Because you started diving into integrative medicine at home, and then you decided to take this trip. So how did that all happen?
Clare: So I sought a lot of great integrative complementary treatments to support me through the chemo, and then the radiation, and after that. And it was costly. So during that time, and early on in that phase, I had a great bunch of friends and family that I’m fortunate to be surrounded by, who put on a fabulous party in Melbourne.
Lauren: It was called The Big C, for Clare and cancer!
Clare: And that was a great night which raised quite a bit of money, which was fantastic and that was able to help pay for all of those integrative treatments that helped me through all the chemo and the radiation. And I also had more funds left over from that, because a lot of the treatments, even though they're in a great place — they're costly. And so I decided, with also the advice and supervision of my main practitioner at NIIM, that I was going to go abroad and seek some additional treatment. And I had the funds to do that from the GoFundMe from The Big C party. So I was very fortunate to do that. And one of the things that was also important for me after all that treatment, which had spread a year-and-a-half at this stage with the two diagnoses and the endo, was just to actually have a break from it. Where your life is not constantly controlled by this appointment, that appointment, this appointment. So getting away was really important. I researched with a friend. I wanted to go to an integrative clinic; there were a lot of great clinics abroad.
It's always good to be mindful that everything's not in the bubble of your neighborhood.
Lauren: And sometimes going abroad, even with the flights and the accommodation and the living expenses, the medical expenses — can be cheaper than doing it at home.
Clare: Oh, it was far cheaper. Ultimately, I chose to go to a clinic in Colombia, in Cali.
Lauren: That's run by Cuban doctors.
Clare: Yeah, it's a Cuban medical institute there. Not that I've been to Cuba yet, but I've always had an admiration for the medical system in Cuba, which is …
Clare: Socialist, and arguably one of the best systems in the world. So you certainly get a lot of good doctors coming out of there, and they train a lot of people from all over the world in Cuba. Also, a lot of Cuban doctors have left Cuba and set up clinics in neighboring countries, which are a lot more accessible to foreigners, for ease. And for reasons of capitalism and so on, that we won't go into.
Lauren: But one aspect of that that we did talk about before this interview was the tie into the pharmaceutical industry with the medical industry, right? In Cuba, the ties to the pharmaceutical industry are less toxic — if you’ll forgive the pun — in the sense that in a country where the capitalist system doesn't exist in the same way, these pharmaceutical companies can't make money in the same way because of the particular regulations.
Clare: Yeah. Well, they don't have the monopoly because the system doesn't allow it. And that's something that you and I have talked about, and I've, in hindsight, come to think about.
Originally, I wanted to see Cuban doctors just simply because I thought they were the best. However, it's inextricably linked with the system that has afforded them to be such in that society.
And I thought, you've had cancer twice … I’m 34 … you've got to do something a bit more extreme. You've got to go and get another opinion, and a different one; just go to the other side of the world and see what someone else says. Because I didn't want to kick myself for not doing it, later. I didn't want to have a third diagnosis and think, well, why didn't I go? And sometimes I think in people's health quest or healing, you have a draw to certain things. You have certain things that you feel might help you, or that you feel you know about your body prior to them. And I just ran with that feeling. I knew the integrative stuff was great. And then I was interested in the perspective of the Cubans, and with a dear friend who helped me with the Spanish and the researching to find a place, we found a clinic in Colombia — where I'd always wanted to visit, as well. That was a great experience. I went for two weeks of treatment there just recently.
Lauren: And what does the treatment involve?
Clare: They had a lot of treatments that were the same as what I would have received at the NIIM clinic in Melbourne. For a fraction of the price — really, a fraction. That's being in a developing country, I suppose. And so I kept up some of the treatments such as intravenous vitamins — so, drips of … particularly vitamin C, which is cytotoxic in high doses; and magnesium; lots of other vitamins intravenously. I was in a hyperbaric oxygen tank for an hour minimum every day. That's oxygen under high pressure — which can cleanse the cells, is the idea — and expedite healing of cells. And ultimately cancerous defects in your DNA that your own body doesn't recognize as being a defect.
So we fight tumors every day, you and I. Right now.
Lauren: That’s what natural killer cells are for.
Clare: Yeah, but sometimes when they’re cancerous our body doesn't recognize that, and then that's the defect. So the hyperbaric oxygen was to cleanse the cells. I had two different types of immunotherapy while I was there, which is something that wasn't offered to me with the Western treatment in Melbourne. I feel it'll be the future of cancer treatment really, because it targets cancerous cells without all the damage to healthy cells that chemotherapy and radiation cause.
Lauren: Isn’t one of them the blue scorpion thing?
Lauren: This thing is so cool!
Clare: That's an interesting one because it touches on what we were talking about with the pharmaceutical companies in Cuba. I'm on an immunotherapy drug — I'm still taking it — called Vidatox. And that is a derivative of a blue scorpion. I won't even try and pronounce the scientific name of that, but you can look it up … blue scorpion from Cuba. And that has a lot of benefits. It's been used in Cuba for years and years, and tested for a long time.
Lauren: And they're only found in Cuba, these scorpions?
Clare: Yes, to my knowledge they’re regional there. It's actually used for other illnesses such as arthritis and as an analgesic; for a variety of different illnesses.
But certainly for cancer, the concept is that the venom from the blue scorpion has the capacity to target cancer cells specifically, and kill those without causing any damage whatsoever to any other cells in the body.
Lauren: Isn’t that amazing?!
Clare: It’s had fantastic results with cancer and other drugs over the decade-plus that it's been used and tested. And in Cuba, it's less than $1 a go. And people in the streets apparently just pick the scorpions up and try and get them to heal them from pain and things.
Lauren: I can’t even imagine! It's crazy!
Clare: It's an interesting one. It was only about $90 USD for me to get that.
Lauren: But it would have been $1 for you in Cuba.
Clare: Yeah, and that's a full two-month, three-month course of it for that price. That's an interesting one, because it's so inexpensive because the pharmaceuticals haven't gotten into it yet because it's a Cuban thing. So it'll be interesting to see what they'll charge or if [pharma] get their hands on it. So that's one immunotherapy drug, and I'm still taking that. And the other immunotherapy drug I took is called 4life transfer factor; it’s a derivative of the bovine, from a cow’s immune system, and also from a chicken egg yolk immune system. A combination. And that was a series of shots. So I took that while I was there, as well. So they were interesting things that I hadn't heard about … and why wouldn't you?
Lauren: Yeah! If they don't have negative side-effects, you might as well give it a go.
Clare: It's targeted, like all immunotherapy mostly is, targeted, which is why I think it's the future. It is being used in Western medicine as well. But I just don't think for breast cancer in Australia, it’s quite caught up yet. So they were some of the many things; I had a very interesting experience. I saw a variety of doctors over the two weeks, and the lead doctor was a Cuban woman, Dr. Grisel. It was interesting, the first day I arrived at the clinic in Cali, I went to see her, and sat down in her office. And the first thing she said to me was, “So. breast cancer … " She didn't really have a history of my illness, so everything was from scratch once I arrived. She was getting the brief history of my illness for her empty file. And she wanted to know what side, what breast it was in. I explained it was the left breast. And the next question was, do I have children? And the answer to that is no. And the third question was, how is your relationship with your mother?
Lauren: How did she know??
Clare: Well, it just sent a chill down my spine, because personally, being sick following the loss of my mother, I had always felt inside me somewhere that there was a connection between those two things — between losing my mother in between falling ill. It wasn’t something that had ever really been raised or discussed at length with any health practitioners. Certainly the integrative doctors in Melbourne believed in a homeostasis and everything affecting your wellness overall, including emotional health and the effects of trauma and post traumatic stress. But just as soon as she asked the question, I thought, gee, why is why she asking that? Ultimately, because she believes …. and from her very experienced background … the belief is that there is a direct connection between breast cancer and both your mother and children, should you have them. The causes are related to those relationships, or traumas, or emotional issues or traumas related to those relationships.
Lauren: And that ties into the work … you were telling me about a German doctor who's pretty controversial … in the ‘80s, I guess … who pinpointed these different kinds of cancers and how they were each linked to different kinds of emotional experiences. And he was sort of taking an integrative approach to treatment, wasn't he? So I imagine a lot of that underpins the work with these integrative doctors that you were doing.
Clare: Certainly. It was very interesting. I hadn't heard about him before. And a lot of the treatment at the clinic pointed to emotional …
Lauren: Well, there was regressive therapy there too, right? There was a holistic approach in that sense, therapy as part of the treatment, when you were there.
Clare: There was certainly therapy as part of the treatment. And nutritional advice and supplements were given, and probiotics and supplements and the immunotherapy.
Lauren: And they said: No more milk.
Clare: No more milk. Definitely no more milk. Anyone who's worried about getting breast cancer or who's had it, give up the milk. There was a general consensus between all of the doctors I saw at the clinic, especially the lead doctor who asked me about my mum first day.
There was a general consensus that an emotional trauma likely to do with my mother was the underlying root cause of the cancer. And that if I could sort through that, I would be able to heal myself. Not in a pigeonhole. Because it came with the diet and the exercise plan and the immunotherapy and so on. But the regressive therapy dealt with that a lot. It was a very interesting approach.
Regressive therapy, I didn't know much about.
Lauren: Yeah, I don't either.
Clare: I think in a layman's way, the best way I would describe it is like a cross between Reiki and hypnosis. Dealing with energy, but also regressing into your memory in a guided meditative type of situation, and rebuilding relationships with your memories through that experience. It was a phenomenal experience. I thought it was a bit questionable to begin with. But then I had an amazing experience doing that.
Lauren: But you gave it a try. And that's the big thing, isn't it? You said yes to the experience of giving it a go.
Clare: Yeah. Well, I think if you’re flying to the other side of the world, at that point, what am I going to try? The blue scorpion? (laughs) I don't wanna get cancer again.
Lauren: One of the remarkable things I've always felt when you told those of us who are close to you that you had cancer — the first time, and then of course, the second time — when we were given the news, you were very, like, “I'm going to be fine.” You decided you were going to be fine from the very beginning. And of course, there have been moments of unease with that decision, really. But you've always been someone who’s, like, “Yep, I'll give it a go.” Like, there's nothing you won't try. And I think that's a huge part of how you found all these other kinds of therapies, how you are working through the healing now … you're saying yes to things, instead of saying no to things and sort of shutting things down. Because you've made a decision against it, you're actually embracing experiences that you may not have ever had. And in a way, the cancer’s brought that to you, hasn't it?
Clare: Oh, definitely. There’s a whole load of silver lining.
There's so much silver lining. I’m a believer in things happening for a reason. And you can always, in a negative situation. turn it around and take something positive out of it. I mean, that's life! So, I'm grateful in many regards to my diagnosis. And I think the first time, I just didn't quite get there. I was positive and I thought I'd get better — but I hadn't quite addressed it and quite looked down the barrel of grief. And I hadn't quite looked down the barrel of cancer and squared up against it.
Lauren: You’re still doing it!
Clare: It's an ongoing thing. Like you said yourself, cancer is a chronic illness. It took me a while to figure that out, too.
Lauren: That’s, like, an earth-shattering realization to me.
Clare: Yeah. And I had that explained to me the first consultation I had with an integrative GP. She used the lovely analogy for me to explain the cancer — and that was of an apple tree. She drew a picture.
So if you can imagine this … if a tree grows, and then one branch produces a bad apple, you can cut that apple off, and you can poison the branch. But it doesn't mean a bad apple’s not going to grow on the other side of the tree. And if you want to free the tree from bad apples, you need to treat the tree from the root up.
Lauren: That's really an explanation of integrative medicine. That's not just cancer.
Clare: Yeah, well … health. It’s a health approach.
And that's what cancer ultimately is. It’s an immune system default; it's a DNA default. It's a scary word. But it's a chronic illness, and the tumors are a symptom of chronic illness. And that chronic illness is deep seated in your environments — both external to your body and internal to your body. And mind.
So I always remember that analogy, and I always will remember that. Because I think that was it with the cancer … I could chop the tumors off, which I did. And I could poison them with the chemo and then again with the radiation. But it doesn't mean that another tumor can't pop up again somewhere. I need to really deal with the root causes in an overall holistic …
Lauren: Which is like mind and matter. It's the physical and the mental. The other thing we didn't mention as part of the treatment that you were doing in Cali was the DNA workup, which you're waiting on — a full DNA workup.
Clare: Yes. So that's super interesting. I was very excited to have that done. DNA testing is just so easy to have done because you just swab your mouth and it's all off.
Lauren: It's expensive in a lot of cases.
Clare: It is. I had full genomic mapping done in Cali for $1,600 US. I mean, they're just figures; people can find all different things.
You can't put a price on health, but everyone's in a different situation.
I was fortunate enough, as I mentioned, to have the GoFundMe money to pay for that, because I haven't worked in the time …
Lauren: We’re going to get to that!
Clare: So anyway, the DNA mapping is going to give me a full comprehensive map of my DNA, which is going to list predispositions to other illnesses, including cancer re-occurrences.
Lauren: Whether certain medications will work for you …
Clare: Yeah. So it's going to give me a list of hundreds of medications and whether or not I have a pathological response to them. Because that's something about having the chemo that has always concerned me … that they just chalk it up and give it to you. And there are actually tests out there to see whether or not you'll have a pathological response to chemotherapy drugs, of which there's at least a dozen available. But they didn't do that. They just gave it to me, I suppose for cost. So, when I get the results of this DNA test, it's going to list not just every type of chemotherapy, but everything from paracetamol, to antibiotics, to a variety … hundreds … of different pharmaceutical medicines, and whether or not my DNA has a pathological response to those medicines. And, if so, what dose I require. That's going to be phenomenal and life-changing.
Lauren: And foods, nutrition …
Clare: Foods, how I process those, what's good for me and what isn't. Super foods are super foods for some people. So chia seeds might be a superfood for you, and not for me. But goji berries might be for me, and not for you. So I'll have a map of which ones are and which ones aren't. And I won't be wasting money on expensive items if I know it's not going to have any effect for me. So it's very exciting, and will have an ancestral part; I'll see my whole background, as well as what types of exercise affect my cells. It's not the same for everyone, as you can imagine — cardio, weights, all of that. So it's really going to give me a plan that will come with the results of how to best manage myself into the future to prevent any other illnesses I may be predisposed to. And a recurrence of cancer … it will generally keep my health at prime, so it’s fantastic that science is so far advanced. I didn't really know about anything like that until I was in contact with these doctors in Colombia. That's something to look forward to, getting the results.
Lauren: That’s amazing. Because, really, to me, that sounds like it's the epitome of preventive medicine. If we all had access to testing like that … which at this point is still very costly … if we all had access to testing like that, we would be avoiding chronic illness. In many cases, we'd be avoiding taking medications on an experimental basis, and we'd be able to target our treatments more. It's so sensible. So it's really interesting that this comes up, because it makes me think, gee, it's worth just getting the genetic testing if you can afford to get it done as a preventive measure so that you've got a fuller picture of what your body is capable of doing. And handling.
Clare: Yeah. It's fascinating, really. For me, I didn't hesitate to get that because, as you know, I’ve had all of this problem with illness at a young age. So for me, to know what I'm predisposed to is something I would like to know so I can try and manage it. However, I think it's completely understandable that a lot of people might not want to know, because it could change the way they live and put them … you don’t want to live in fear of things. I think there's a combination between what you can know and managing that, but also managing yourself from a holistic sense. And a mental health and a mind/body/soul sense without that information, which could also, overall, prevent you from getting things. For someone like me who has been sick, I think, definitely, I'd like to know. But I kind of appreciate that for some people, maybe they wouldn't want to know that information. Or they wouldn't want to know parts … but other parts would be helpful.
Lauren: Absolutely. And you've also gotten into meditation as well. And this is one where we don't need the genetic test to tell us that there are plenty of scientific studies out there that tell us how good meditation is for the cells in the body. And you had a friend introduce you to Dr. Joe Dispenza. So you've been reading some of his books and doing some of those meditations. And that's something you can plan to continue to do, as well.
Clare: That's been brilliant. I've dabbled in and out of meditation over the years, transcendental meditation and other types … each to their own, of course. But only in recent times have I been introduced by a friend to Dr. Joe Dispenza, as you mentioned, and I'm finding it phenomenal … just the scientific side. It's interesting that for someone who was never really that interested in science in high school, I've done a full 360 and I'm now fascinated by science, because it's affected me so much through my health.
Lauren: We’ve turned into science nerds!
Clare: I know, we have! Who knew? But that's phenomenal, because …
I do ultimately believe that you do have the power, physically — to heal yourself.
Lauren: You were talking about doing a visualization, imagining your body killing cancer cells and watching them explode and disappear … and how even that kind of mindfulness practice is something, if you're able to continue to do it, that could be really helpful.
Clare: Oh, look … I do not think that the power of visualization and power of willing things to come to you … and emotions and the power of positivity, should be underestimated at all. There are a number, a great number of studies out there — that evidence this sort of thing.
Lauren: Some of them Dr. Joe Dispenza has done himself!
Clare: Yeah, I know … I'm giving him a plug, aren’t I?
Lauren: Well, we’re big fans, so there we go!
Clare: Fabulous stuff like that. And meditation is great for me, just to keep me calm and balanced. I mean, it's got a lot of positive elements to it —whether you do yoga, or what they call mindfulness … app things, transcendental … there’s a variety out there.
Lauren: Find what works for you.
Clare: And it doesn't have negative side-effects like chemotherapy does.
Lauren: It’s free medicine.
Clare: So, why wouldn't you?
Lauren: Yeah, absolutely. Okay, so we've covered a lot about when you realized you were sick, what your diagnoses have been, what steps you've taken to control your health. But let's talk more about the people involved in this, and the emotional world of it. Did you find that you needed someone to advocate for you? Because I know you talked about putting your own foot down with people. But did you find that you needed someone to come with you to appointments or stick up for you when you were going through all of this?
Clare: I think I was very fortunate to have a lot of friends and great family to offer to support me in a lot of those appointments, and I took them up on it. Although you can't fit all my friends at every doctor's appointment!
Lauren: You’re a bit too popular!
Clare: Which isn't to be complained about! That was fantastic to have that support.
Lauren: But sometimes it was also too much, right? Sometimes you just needed a rest?
Clare: Yeah, of course.
Lauren: And that’s normal.
Clare: Everything’s tiring at some point.
Lauren: Everything in moderation.
Clare: And I also found that I got a lot of support from the cancer community once I tapped into that, which wasn't really until the second diagnosis.
Because it's great to talk to all your friends who love you. But sometimes it's great to talk to someone else who's had cancer, or who's on the same drugs, or who has had the same surgery. It's important to have people who have a level of understanding.
I have had so many people say to me, “If there's anything I can do, let me know.”
Lauren: Because no one knows what to say aside from that.
Clare: And I think that's great, to hear that. And sometimes there are things people can do. But ultimately, I think in terms of an advocate, it had to be me. I would definitely point out the benefit of having a fantastic GP. And I was afforded that. He was brilliant.
Lauren: And this is all because of nationalized health in Australia.
Clare: Yeah. I mean, it was all free.
Lauren: Everything that wasn’t NIIM was free.
Clare: And I didn't have insurance, because I wasn't working. So that's certainly important to note. But my GP was fantastic. He would text me, email me, drop into my home. He was available 24 hours to me, and would skip me through the queue for appointments. And so …
I certainly think having a good GP is never to be undervalued. And if you don't have a good one, get one.
Find one for yourself. But yeah, I think the advocacy ultimately had to be me. I was fortunate enough to have been raised to speak up and ask questions and never believe anything someone tells you.
Lauren: Unless you’ve done the research, yeah.
Clare: And get a second opinion. I did do that.
Lauren: How has that impacted your relationship with yourself? Has that increased your confidence, or given you more compassion for yourself?
Clare: Yes, I think. I don't think I've thought about that. That's a good question, Lauren. Yeah, I think it has. I think the first time I had cancer, I just sort of skipped over it … like, oh, whatever … be positive, move on … it’s just a double mastectomy … she’ll be right.
Lauren: It’s just a double mastectomy!!
Clare: (laughs) And then when it was a second time, I was, like, ‘Oh, hang on a minute. Maybe I really need to be taking this a bit more seriously!’ And the second time around, I've spoken up more, and I've reached out to the cancer community more, and I've documented more.
Much like yourself, having a direct experience, I have felt like I owe it to myself to have respect for my illness that I've gone through — but also to the community, the cancer community especially, and those interested in the community at large to try and document my health quest and my experiences. Because it could be useful for others.
I was just lucky that I ran into someone at that wedding who mentioned the clinic, and everything cascaded from there for me with integrative health. But other people wouldn't know about it. I didn’t. Why would people know? They might not listen to your podcast.
Lauren: How dare they not listen to my podcast?! (laughs)
Clare: People should be united … and the people united will never be defeated, hey?
Lauren: Hey! We’ve got a football fan. (laughs)
Clare: Share the knowledge! So I've documented more of my experiences this time, and on this trip to Colombia.
Lauren: Especially because it was a GoFundMe page … you were sort of giving back to the people who had given to you.
Clare: Yeah, that's right. People are interested. And instead of exhausting myself by responding to 100 people's questions on social media or in person about … and then what happened? and how was that? … if you document it and you try and do that in a nice little form of communication, it’s there, and it's available for people to access as a resource.
Lauren: And you've done that on Insta stories and Facebook stories. It's been really great for me, because I was sitting here thinking, ‘I hope Clare's okay!’ And I was able to just check your Insta stories every day, and not only see all the great things that you were doing at the clinic, but then also, like, the monkeys in the rainforest, and the beaches that you went to. Because you turned it into a holiday, because you're not going to go that far and not have a little bit of fun. You really did enjoy it, and give yourself a vacation, as you say — that vacation away from the constant barrage of doctors’ appointments and opinions from people outside of yourself, right?
Clare: Oh yeah …
Never underestimate the power of a vacation to heal! A change of scenery, a change of mindset. Sunshine, swimming in the ocean, rainforests, nature.
I was reading an article recently about the scientific evidence that suggests nature is a huge health benefit for healing and maintaining good health and wellness. So it was fantastic to enjoy those things. And, you know, it was a road unknown. It was nice to go to Cali where I'd never been and forge relationships with these doctors where no one I knew had been — that was part of the adventure, I suppose. People have a lot of hangups or pre-conceptions about places when they haven't been, or medicines, or whatever. So I was pleased to be able to go out there and give it a go. And document that to maybe help educate someone else.
Lauren: So, tell us what a typical day looks like for you now — with all the drugs you're taking — and how you're having to do timed-out dosing and all that kind of thing. How does that play out for you?
Clare: Typical? (laughs)
Lauren: I know! Every time I ask that question, I’m, like, well, there isn't a typical, is there?
Clare: Well, I like to keep it interesting! It's quite varied. I do take a lot of supplements, and I try and get a lot of good food in. I'm a big fan of food, as you know, so that's not too difficult. And exercise. And tick those boxes between meditation, exercise, eating, and my supplements, and getting rest in. I'm hoping to return to work soon.
Lauren: So when when you got your diagnosis, you weren't working?
Clare: I was working, actually. I was working at a friend's new restaurant in Melbourne, helping her out while I applied for …
Lauren: Legal jobs.
Clare: Law jobs, professional jobs. So I was helping out in a friend's fabulous restaurant. But I stopped doing that with the diagnosis, because of all the surgery I had to have. And I've worked a little intermittently since then, volunteering on refugee camps and doing some volunteer criminal law work. But I haven't had a full-time job. Between the death of my mother, and the first diagnosis and then the second diagnosis, I haven't got around to starting afresh. The doctors told me when I was going into chemo that they didn't think it would be a good idea for me to get a new job while I had all that treatment. Whereas, had I already had a job, I could have decreased my hours and maintained that. Statistically, people have a better survival rate if they maintain some work. But I'm looking forward to working now after all this.
You get a different perspective on life when, as you know yourself, you go through illness and life-changing events. They make you reconsider your priorities and what is important and what makes you happy.
So I have a fresh look on things. Always a fresh look! But I hope to go back to work soon.
Lauren: That was something that came up, wasn't it, when you were in Cali … about the concept of going back to work. Because, it's like … you want to go back to work, but you had a little bit of anxiety at the thought of going into criminal law work again, because there will be cases you're working on that will be, perhaps. high stress — because the stakes will be high, and you'll be concerned for other people. And you were, like, oh, man, I could go back to work and it could be stress … and will stress actually make me sick again?
Clare: I think stress is something that has definitely been identified time and time again for me with this cancer business. It's something that I needed to address. And it's a contributing factor to cancer, especially to hormone-based cancers like the one that I have, which is estrogen- and progesterone-positive breast cancer. It's inextricably linked that stress and cortisol and your adrenal gland — and I've also been diagnosed with adrenal fatigue — they're obviously linked to your speed and the pace you operate at, and stress and the different modes of brainwaves. You can go into alpha beta — the fight or flight mode — contributes to stress and affects your hormones. So I knew that it was something I needed to address. And I was a bit concerned that going back into a full-time high-paced law job which included the trauma of crime might impact that. But I raised that with one of the doctors in Cali, and they were quick to assure me that something like that wouldn't cause distress. It's more about my own management of it. So I'm now looking into doing regular yoga and increasing my meditation and things like that, because I feel if you can process and detoxify your body and your mind from the things that it's enduring …
Lauren: Like, leave it behind …
Clare: … that it won't have a chance to manifest inside the body.
Lauren: It’s just letting it go, isn't it?
Clare: There's a lot of release and detoxification, not just from things you might consume, or be surrounded by, but from things you endure — situational trauma and emotional experiences. So, being able to release yourself from those and participate in yoga and meditation, or whatever floats your boat. It’s different for some people … you might paint, you might write a song, you might go to the gym … but just being able to process those stresses so that they don't toxify your system and manifest into illness. Whether it be mental illness, or whether it be more cancer, or whatever. So I feel positive that I can go back into the legal profession …
Lauren: Whoever’s listening … are you hiring? (laughs)
Clare: …managing most things!
Lauren: So, I was going to ask you how you balance the demands of work and life. You'll know once you're working again, but it sounds like you've got a game plan in place for getting on that horse and making it happen once you're ready. I know we touched on this because we talked about your experiences with some of the doctors in your path to diagnosis, but have you been frequently confronted and forced to justify your illness to other people — because it's not obvious from the outside? And what do those experiences look and feel like?
Clare: It's interesting. You mentioned it not being obvious from the outside, and I suppose that's the the link to the Uninvisible Podcast itself. It’s the preface, I suppose, of why we're here today on the show. I don't think I looked sick. I think I looked sick when I was having chemotherapy. I didn't look well; I didn't feel well. It was a severe amount of poison, carcinogenic poison, being injected to your bloodstream. So I didn't look well on that. But if I put makeup on, I looked okay. I chose to do the scalp cooling, which was a very painful option that is available these days in most countries as I know it — to freeze your scalp and freeze your hair follicles so that you don't lose your hair during chemo. So I lost a little bit, but not noticeably. So if I walked down the street with makeup on and a positive attitude, there's no reason anyone would have thought I was sick. The radiation caused terrible, extreme burning to my chest and breast. But of course if I was wearing clothes, no one would have known for a second that I was ill. Sometimes I've thought about, would I have been better off, or would my experience been different, if I hadn't chosen to freeze my hair follicles and I'd let the hair fall out? I was concerned I'd be confronted with myself in the mirror — and when it was an option, I took it.
But I think when people have lost their hair on chemo, often you can tell that they're sick.
Lauren: And did you also not want to be perceived as sick?
Clare: I didn't want to be perceived as as sick. And I think, although I could have justified perhaps not doing certain things or canceling on people or events, or not making it to as many outings as I might have because of the cancer … on the contrary, something made me get up and go every time. I was, like, I'm not going because I've got cancer. Don't not invite me. I would be offended if someone hadn't included me.
I thought, hang on a minute … I'm still me. The cancer doesn't define me. But it's an interesting balance, because on the one hand, I feel like I have been redefined by the cancer. But on the other, I didn't want it to be everything I stood for.
Lauren: You didn't want it to be your identity. Which it very much would have been if you'd lost your hair. You know it's either alopecia or cancer when you see people lose their hair, isn't it? There are other reasons, of course …
Clare: That's right. People get quite shocked because I think I'm pretty casual when I discuss it . People ask, “Oh, why were you in Colombia? Why are you doing this?” And I’m, like, “Oh, I've had cancer.” People sort of freeze and they don't know what to do. They feel awkward, and that's reasonable.
Lauren: Is that on them? Do you have to justify? Have you had people say, “No, you don't have cancer.”
Clare: Yeah, I have! Or, like, “Really??” Or being shocked. I think one in eight women get breast cancer at some stage in their life. And I noticed a fact on Cancer Research UK just the other week that said one in two people will have cancer at some stage in their life. So I think it's pretty important that people know that … yeah, I've had it.
It's not a death sentence. It's a chronic illness. And it can be managed.
And it's important to be talked about. I feel I had to do a lot of explaining to people all the time who weren't educated about it. So it's good to share the knowledge. But it was also exhausting for me to repeat the same answers to questions over and over again, and to people who simply cared and meant well.
Lauren: But that's where it was great the way you managed that when you went to Cali, where you said, 'All right, I'll just put it in my stories and people can watch that. And then I don't have to update every single person individually.’
Clare: Yeah, that’s what led to that. That was great. I'm happy to educate people; I'm always happy to help. But it can be exhausting when you're going through a lot of treatment, as you know … things that cause ongoing fatigue and nausea, and managing such symptoms. It can be exhausting to constantly be talking about it, and focusing on it.
Lauren: And not just physically, but emotionally, as well.
Clare: Oh, yeah, definitely emotionally. And then that affects the physical, and the physical affects the emotional, and so it goes. So it can be exhausting. And I have done a lot of explaining. But that's why forums like this are great; people can tap into these resources to get the information they want so people aren't left repeating themselves.
Lauren: And we're going to give this link to everyone who donated to The Big C, so they can get the full story!
Clare: Hi, guys!
Lauren: So, has your experience turned into advocacy on a larger scale? Or do you have plans to work in the advocacy space because of this, aside from sharing your story, so that … who knows who might listen and be inspired by it? Do you have any plans in that space at all? No pressure! You don't have to have one.
Clare: Well, I’ve got you. You're advocating for me right now, which is great! So I appreciate that. And I feel all of my integrative practitioners are advocates for me on some level or another, which has been really encouraging. And it has been the stark difference between my experience in the orthodox medical system and the integrative medical system. But I do feel, following what I've gone through, and the alternative treatments I've had and the knowledge I feel that I've gained — which isn’t absolute — and by no means do I have a scientific background, although it's improved from previously — I do feel somewhat of an obligation to share that knowledge in a platform, or to make use of that for the benefit of other people. Not just that I feel that I owe it to the kind people that donated to my GoFundMe and got me here that I might explain what happened for their own interest. But I do feel that when you've had an experience and you have something to share, I feel obliged … as I'm sure the listeners can tell, I’m from a white, privileged background and an educated background. Akin to that as well, I feel some level of obligation to try and utilize the benefits I've had, or the experience I've had, that might be able to help someone. I don't know about launching into a career. But I've got a few ideas in the pipeline. I’d like to contribute to a few groups, and the cancer community, at least at large, to try and share some of the information I've had.
Lauren: I'm excited to know how that all goes! So, how important is it that we keep talking about invisible or visible illness, and disability, and the difference between a chronic illness and a death sentence? Do we just keep shouting it from the rafters, and hope the right people keep listening? How does that look to you?
Clare: Well, we can keep shouting as well. Because that can be fun! But I think it's important to keep talking about it. And that links on to the previous question … that's why I feel it's important. It's easy to have a cancer diagnosis and go, ‘Oh, gosh, it's a terminal illness! Shit!’ But it doesn't have to be like that. You don’t need to be scared into oblivion by these doctors. There are other ways. And there are other people out there you can reach out to, and facilities and groups out there. It's important that people know about those. I didn't know about integrative medicine; I didn't even know what it meant! I had never had to, until I was sick for a second time with cancer.
I think it's important that people are educated about their options, and not just the orthodox Western option that is, ultimately, a monopoly of the pharmaceutical companies. There are alternatives, and overall health and holistic health is the most important thing to having that balance. I'm not saying that I caused my own cancer. And I'm not saying it necessarily even could have been prevented. Who knows? You can't answer that absolutely; I can’t answer it for myself. But I certainly know that after my experiences, I can prevent future recurrences and future illnesses.
Lauren: Well, you can take responsibility for healing.
Clare: I can do the best that I can. And I have access to that information. So, I think people knowing about that, knowing the link … it’s not just potluck. I had a lot of friends say to me, kindly and supportively, “Don't blame yourself. It's not your fault. You’re just unlucky.” And I struggle a little bit with that — because on the one hand, I don't blame myself and I don't think it's my fault. But on the other hand, I don't think it's just random. I think there were things in my life, in my lifestyle, that caused it to happen for me. And I think knowing about that can help prevent illnesses, including cancer, happen to other people.
Lauren: And it will also help you continue to heal. So that's the benefit. So, I like to wrap up my interviews with some Top Three lists. And I wondered if you had top three tips for someone who suspects they might have something off, like that person who has that weird pain in their chest? What are your tips for those people who are perhaps entering the world of living with illness, or invisible illness? What advice would you give them?
Clare: Listen to your body! Number one, listen to your body.
You know your body better than anyone. Better than any doctor, integrative or otherwise. No one is going to know your body as well as you know your own. And if you feel like something's up or something's amiss, and you don't feel like a practitioner has recognized that, get a second opinion. Get a third, get a fourth … go back until you're satisfied that what you've been trying to communicate has been understood.
Lauren: That’s really good. That's very empowering.
Clare: Two … following on from that, I would say … be open minded. Be open minded about integrative health.
Lauren: And not just integrated, but alternatives, right?
Clare: Yeah. Be open minded. That's what integrative is — it includes all of them.
Be open minded to different approaches to health and healing. And bear in mind to be open minded to those ones that don't fund the pharmaceutical companies.
There's a lot of medicines out there that you can take that have 10 beneficial properties. And then there's a lot of pharmaceutical drugs that have one beneficial property — if it happens to work — and 10 negative side-effects that can cause something else. So bear that in mind.
Lauren: Chemo. Hi, chemo. We’ve got your number.
Clare: Yeah! So, with being open minded, I suppose I'd say my third tip is:
You can heal yourself. You can heal your body. A diagnosis is not a prognosis. It’s a diagnosis. And with that, you can heal yourself. The body is an amazing tool.
Lauren: Well, the mind. Where the brain’s involved, especially.
Clare: It’s an amazing tool. You can tap into the resources you have right here in your own existence. You can heal yourself.
Nothing is a death sentence or a terminal sentence. That's just not true. People come back from all sorts of things. You've had them on this show. People have all sorts of stories to tell about what they went through, and how they've healed themselves. And so if it's possible for them, then it's possible for you.
Lauren: Oh, I love that. And look how positive you are … it’s that P.M.A., that Positive Mental Attitude. That keeps us floating along! So, last Top Three list. We talked about how you've been making all these different lifestyle changes — and there will probably be more to come after the genetic testing comes back. But do you have any top three cheats on your lifestyle changes, or guilty pleasures, or even comfort activities … when things are going to shit — that you turn to? What are your three things that give you joy?
Clare: Oh, yeah, I'm a lady of indulgences! I figure, what’s the point of surviving cancer twice if you're not going to enjoy life? If you're not going to enjoy cheese and wine, for example.
Lauren: You were told to stay off the cheese, but we’re still not sure about that one! (laughs)
Clare: Well, I’ve cut right down. Don't try this at home, kids!
Lauren: But if it becomes a special treat, instead of a thing you have with every meal. You just change the way you consume it.
Clare: Of course I do. But …
I don't see the point in surviving all of this, if you can’t enjoy what you enjoy.
Lauren: We certainly enjoyed some wine last night.
Clare: We did. And I think also what goes hand in hand with that is … I have other things I enjoy … cheese and wine just comes to mind. I have other things that I don't indulge in anywhere near as much as I did before, that I do occasionally now. But I think what I've learned what's important is, that when I first was diagnosed with cancer, I ran out and bought all this kale … stopped everything … and then I realized, that's actually not going to cure the cancer. And then when I survived all the chemo and surgeries and stuff, I ran out and went, Oh, I’d love some cheese and wine! And then I thought, one extreme or the other isn't really going to do it.
You need a balance, as we all know. But what's important is not to feel bad about it. You can have your cake and eat it, too. If you've been feeling shit and the cake’s gonna make you feel better … go for it. But just don't feel guilty about it. I think in the long run, feeling guilty about the cake or the cheese or the wine, or feeling stressed about indulging in cake or cheese or wine, is what's ultimately going to be bad for you. It's the guilt that’s attached to it, or it's the stress that’s attached to it. The cake isn't going to give you cancer.
Lauren: Yeah! It’s the perception of what the cake is.
Clare: Cake won't give you cancer! Wine won't give you cancer! But feeling stressed or guilty about them …that can do that. So just enjoy life!
Lauren: So you have your wine and your cheese. Do you have any other things, or comfort activities, or just things that are giving you joy?
Clare: Oh yeah, I think music has been a number one thing for me. It got me through all of this. Music’s really important to me and it's been life-changing. And there's also studies to say how it can affect you. Apparently going to a gig increases the length of your life by …
Lauren: I'm not sure I posted that article. I need to look it up again.
Clare: I was pleased to hear going to do a gig or live music is very good for you. So get out there and do it. Listening to music is great.
Lauren: And all sorts. You listen to all sorts.
Clare: I've certainly indulged in quite a few concerts and shows recently, whilst I've been going through all this. And that has certainly kept my spirits up. Music is another fantastic indulgence that doesn't even have a negative side-effect, that I know of.
Lauren: I don’t think so. I don't think there are any negative side-effects there.
Clare: It’s very healing and soothing. I think my life wouldn’t be worth living if it wasn't for the music and the cheese and the wine and the company.
Lauren: So, good people is on that list, too.
Clare: Good people are on that list! Indulge in hang time with your friends. Do what you want. When I left the clinic in Cali, the leading Cuban doctor said to me as I left … in Spanish … this is my fantastic translation … “Go forth, be successful.” Exito.
Be successful, laugh a lot, and love a lot. And ultimately, that's what I think it's important to do. It'll help you heal. It'll help prevent being ill. Enjoy life.
Lauren: I love that! Well, Clare, it's been so nice having you on the show!
Clare: It’s been great to be on.
Lauren: So special. Thanks so much!
Clare: Thanks so much, Lauren. Great being here.