Andrea Wilson Woods - A life in 147 days

[00:00:00] Welcome to Resilience Unravelled. Hi everybody and welcome to Resilience Unravelled, a podcast

[00:00:11] that examines all aspects of personal and organisational resilience. A huge all-encompassing

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[00:01:12] Hi and welcome back to Resilience Unravelled. And I have the particular joy today of seeing someone

[00:01:17] with exactly the same Zoom background as myself. At the same time as my waves are washing in and then

[00:01:24] washing out, somebody else's are washing and washing out. It's almost like they're going to be caught in the

[00:01:28] middle of a tsunami any second sooner. And the coconuts are going to drop from those palm trees.

[00:01:33] But first of all, let's welcome the other person. Andrea Wilson-Woods is joining us today from

[00:01:39] some strange country across the Atlantic Ocean. Hi, Andrea. How are you today?

[00:01:47] I'm great, Russell. And you promised me that you are not going to show this video. But yes,

[00:01:52] we both have palm trees and beautiful ocean in the background. I am joining you from Birmingham,

[00:01:59] Alabama. And I'm from the southeast, but I live most of my adult life in Los Angeles. And I think

[00:02:05] you'll appreciate this. When I told people I was moving to Birmingham, one of my friends, mind you,

[00:02:11] she knew I was from the southeast, but she had never been east of Arizona. And so she just could not

[00:02:17] wrap her mind around someone like leaving the western side of the US. And so she got super excited. And

[00:02:23] she was like, Oh, you're moving to Birmingham, England. That's amazing. And I looked at her, I'm

[00:02:29] like, what? No, no, Alabama. And she was like, Why would you do that? So many people wish I had moved

[00:02:39] to Birmingham, England. Many people. I don't know. Birmingham, UK is not too exciting. It's a very

[00:02:44] interesting accent as you have. But now isn't Birmingham, Alabama last year? Only last year?

[00:02:49] No, really?

[00:02:50] Yes, yes. I should have dropped in for a cup of tea.

[00:02:53] Oh my goodness. Really?

[00:02:55] So that's just a lovely town.

[00:02:56] It is. It's a real foodie town.

[00:02:58] It's a city or a town. It's lovely.

[00:03:00] Yeah. Yeah. It's a real foodie town and very much a healthcare Mecca for the state.

[00:03:04] Yeah. And fantastic sort of local culture and such like. It's got all sorts of stuff going on with

[00:03:10] civil rights and such. So yeah, it was great. I really liked it.

[00:03:14] Anyway, we're not here today to talk about sightseeing across the states, even though I'd

[00:03:19] be happy to do that. And we're not here today to talk about politics, even though I know you're

[00:03:23] desperate to do that. But what are we here to talk about, Andrea? Tell us a little bit about yourself.

[00:03:30] Sure. Your podcast is all about resilience. So that's what we're going to talk about. And my origin

[00:03:36] story, if you will, is when I was 22 years old, I was living in LA, graduated from university.

[00:03:43] And my eight-year-old sister came to visit me for what was supposed to be a two-week Christmas

[00:03:49] vacation. And by that time, our mother's life had unraveled. Our mother was a prescription drug addict

[00:03:56] and she was also a nurse and she had lost her nursing license for shooting up morphine at work.

[00:04:02] So essentially she finally got caught and she refused to get help, even though it's very common

[00:04:08] for nurses and doctors to have addiction issues. And I didn't know it, but my mother's intention

[00:04:15] in sending my sister was to make it permanent. The day after Christmas, our mother called and

[00:04:20] said she didn't want to be a mother anymore and said she wanted me to take my sister.

[00:04:26] And I was pretty dismayed by what I had seen happen to my sister's life when I had been away at college,

[00:04:32] even though I visited quite often. And so I just told our mother that if I took her, then I wasn't

[00:04:39] going to give her back. And so ultimately went to court, sued my mother for custody, won quite easily.

[00:04:47] And, and I'll also mention for your listeners, we have the same mother, but different fathers. So

[00:04:52] my sister's father unfortunately died before she was born in a car accident.

[00:04:56] Wow. And so I raised my sister all through my twenties. I was her parent, her legal guardian.

[00:05:02] And then she was diagnosed with liver cancer one month after her 15th birthday. And she only lived

[00:05:10] 147 days with that disease. And so for context, again, she died two months after my 29th birthday.

[00:05:18] Wow. And it ended up changing the whole course of my life, both raising her and then losing her to cancer.

[00:05:25] Yeah. So I mean, you've given me so much to go out there. Let's start with one of the things you

[00:05:30] said that you took your mother to court. So how is it doing that process, taking on a parent? I guess

[00:05:36] you have to have done that thing where you become completely disassociated with that sort of parental

[00:05:42] role and that role of a child. And you're just dealing with another adult. How complex is that?

[00:05:49] It wasn't that complex because of the way the US law works, or at least it worked at the time. I think

[00:05:56] it's the same is the custody hearing takes place where the child currently is. And so my mother would

[00:06:04] have had to come to California to face this in court and she didn't do it. Now she did call our lawyer

[00:06:11] several times and badgered her and was horrible to our lawyer, but who handled it quite well. And

[00:06:17] then they did, of course, send a social worker to our home to make sure that it was a good home for

[00:06:23] my sister. And by the time I actually took my mother to court, my sister had just turned 12. And that was

[00:06:30] both financial, having the money to do it, but also tactical because in the state of California,

[00:06:35] if a child is 12, what they say actually matters. It has, it carries a lot more weight with the court.

[00:06:43] And so they interviewed my sister privately and, and then it was the actual court hearing was,

[00:06:50] was pretty easy. It was more about the leading up to the court. So I got legal custody four years

[00:06:57] after I got physical custody. So it must be quite old to parent sibling as well. There's an age gap,

[00:07:04] but it makes it easier, but that must have its own sense, sort of peculiarities because you relate to

[00:07:10] your sisters very differently than you do as you're, to a parent. So how did that work out?

[00:07:15] She had been living with me for a couple of months when she had a meltdown in public

[00:07:22] that, and she was, she had just turned nine and it was like a two-year-old, you know, it was like a

[00:07:28] toddler and she lost her mind. She had to be carried out of a restaurant. It was so embarrassing.

[00:07:33] And I thought for sure they were going to call child services on me. I mean, it was just awful.

[00:07:38] And we got back to our apartment and I just said, if you're going to live in my house, you have to

[00:07:44] abide by my rules. And we were in her bedroom and we were like almost in a physical altercation.

[00:07:51] And finally I just stopped and said, you know what? You clearly can't be here and I'm going to send

[00:07:59] you home. Now, mind you, there was no place to send her. And so it was a big bluff on my part.

[00:08:04] So this was back in the days. And I think you're old enough to remember. This is back in the days

[00:08:09] when you could call the airlines and make a reservation and they would hold it for 24 hours

[00:08:14] without a credit card. And that's what I did right in front of her. I called the airlines. I made the

[00:08:20] reservation for the next day. And I said, start packing. I'm sending you home. And again, there was

[00:08:26] no place to send her. I had no money to pay for this ticket. It was a huge bluff, but I felt like

[00:08:32] it was a really pivotal point in our relationship. And so I went into the living room and I just waited

[00:08:39] and for about an hour. And meanwhile, she is throwing things against the wall. She is just livid.

[00:08:45] And finally I heard this total quiet and she comes out and she comes to me and she says,

[00:08:53] okay, sissy, which is what she called me. I want to stay here. And I said, okay, I want to stay here.

[00:08:59] It's my house. It's my rules. You're never going to act like that in public again. And I said, and we

[00:09:05] need to understand our relationship. So this is how it has to be. I'm your parent first. Then I'm your

[00:09:13] sister. And one day when you grow up, I really hope I'm your friend. And she was like, okay, sissy,

[00:09:19] parent, sister, friend. And that really set the tone for the rest of our relationship.

[00:09:25] Yes. And it's interesting, isn't it? The way some people would be horrified. She's throwing

[00:09:29] their hands up and shocking her at the moment, but kids need strong boundaries, don't they?

[00:09:34] Absolutely. Absolutely. I didn't have a lot of money, but I was able to give her structure

[00:09:42] and compassion and boundaries and unconditional love. Yeah.

[00:09:48] Yeah. She knew no matter what she did, I was going to love her no matter what.

[00:09:52] Yeah. And it's peculiar, isn't it? I often think sibling love is a lot less polluted by the sort of

[00:10:00] process of giving birth and such, and then losing oneself in that strange relationship. Because you can be

[00:10:06] more objective about how you will be with each other. And that sort of tough love parenting thing,

[00:10:11] which is really important. How many parents in the world just say, I don't want to be unpopular.

[00:10:15] I've got to be manipulated by my children. I can't be seen to be this and that. And it's for goodness

[00:10:22] sake. Would you do that? People would do that. Do you do that work? But it sounds like you've got a

[00:10:26] more healthy sort of approach to the whole sort of parenting game.

[00:10:32] Yeah. I think it really came from, I didn't know this was a term, but I was apprenticized. I think

[00:10:38] you have, how you say it. I was put in a position at a very young age. I'm the oldest.

[00:10:43] When my parents got divorced, I've taken care of everything and taking care of my brother,

[00:10:48] who's only three years younger. But by the time I was in high school, and at that point,

[00:10:53] my brother was living with my dad's stepmom. So it was me and my sister and my mom. I used to joke

[00:10:59] that I was my mother's housewife. I completely ran the house. I cooked, I cleaned. I took my sister to

[00:11:06] and from preschool. I balanced the checkbook. I paid the bills. I did everything, but actually

[00:11:12] go to work. And I went, but of course I went to school. And then eventually I did get a job my

[00:11:18] senior year of high school. And so I had that as well. And I was running the whole house. And I

[00:11:24] told my mom when I left for college, and I was desperate to get away. I was desperate to have my own

[00:11:30] life. And I told her, I said, you're going to wake up one day and realize just how much I did for you

[00:11:36] and just how much you relied on me too much. And because I didn't really have much of a childhood.

[00:11:43] I didn't.

[00:11:43] You didn't have a childhood at all, really, did you?

[00:11:45] No.

[00:11:46] And of course, that's often a challenge, isn't it? As you get a bit older, because

[00:11:51] it's not like you've learned that model about self-care and having room for yourself and having

[00:11:57] a sense of purpose and personal joy and all that sort of stuff. You can lose out on that if you're

[00:12:02] not careful, can't you?

[00:12:03] That is 100% true. But I will say that because people do ask me about resilience and how I became

[00:12:12] so strong. And I joke that if you have a really bad childhood, that is one way to build resilience.

[00:12:18] It's certainly not the only way and not what I recommend to people. As a child, you're just

[00:12:23] trying to survive. You're trying to get through it. And even at a very young age, all I could think

[00:12:28] about was how do I get away from my family? Even when my parents were still married, I was like,

[00:12:34] how do I get away from this and be my own person? And that's hard to look back and realize that your

[00:12:42] childhood was not happy. I certainly had happy moments. But some of the best

[00:12:48] adults in my life were my friend's parents, not my own.

[00:12:53] And sometimes that's quite good, isn't it? Because again, that uncomplication, that lack

[00:12:56] of pollution from the relationship does allow you to actually see other adults as a model

[00:13:02] of how adult relationships can work. So that's absolutely fantastic. I get a strong sense of

[00:13:07] you having a really strong identity now, though. And obviously, that strength has gone through

[00:13:12] your life. There may be ups and downs because there is with everybody, but you seem to know

[00:13:15] your stuff. How does that work for you now? Do you have relationships and things and children

[00:13:21] and other jobs and businesses and things as well? Have you crafted a life for you? Because

[00:13:26] you said something significant there. You said one way to build resilience is to have a terrible

[00:13:30] childhood. And it is, but it also can be, people can be defined by the childhood and people can

[00:13:35] be made by it. And there's some people who can spend the rest of their life being victims.

[00:13:39] And some people like yourself seem to have pulled themselves together and made it work.

[00:13:43] And I hear from both sets of people on this podcast, oddly enough, and you seem to have

[00:13:47] fallen into that category. So who are you now and where are you going?

[00:13:53] I think your childhood, good or bad, however it was, I don't think there's any way you can

[00:13:58] get away from the fact that it shapes you, right? It really, it molds you, it shapes you,

[00:14:03] but it doesn't define who you're going to be.

[00:14:06] And I think that's the difference. And, and I never wanted to be a victim. I never wanted to

[00:14:13] fall into that category. And I will say it, it made me very independent. It made me very strong. I

[00:14:23] was very confident when I went off to college and I moved from Alabama because I went to high school

[00:14:30] here and this is where my sister was born. But I went to Los Angeles because I wanted to get as far

[00:14:36] away from my mother as possible. And so I went to Los Angeles. I only applied to colleges in California.

[00:14:43] My dad and stepmom by that point were in Arizona. So I thought that was nice because I wanted to

[00:14:48] renew my relationship with my father. And yeah, it took time. I don't want to, I don't want to make it

[00:14:55] out like it's easy or anything. That's important, isn't it? Yeah. It took time. I think one of the

[00:15:01] best things though, that ever happened to me was getting custody of my sister because I did get a

[00:15:06] little lost after college. I graduated early. I got into a terrible relationship with just a falling

[00:15:13] down drunk alcoholic who was incredibly abusive. And I did not understand the connection between him

[00:15:19] and my mother until a therapist pointed out to me. I didn't know what that word enabler meant.

[00:15:25] I didn't know that I have a pattern of taking care of people and taking care of a child is one thing,

[00:15:31] but taking care of another adult is a totally different thing. And, and so when my sister

[00:15:36] came to live with me, I was still in that relationship and I pretty quickly got out of it

[00:15:42] because I could see that if he was going to hit me, eventually he was going to hit her.

[00:15:46] Yeah. And, and so she really became my North star. And I think that is, I feel like there's

[00:15:54] sort of two parts to resilience and part one is you have to have a North star, whatever that is.

[00:15:59] And it can change. It doesn't have to be the same, but she really became my North star because I just

[00:16:05] wanted to be the best possible parent to her that I could. And I wanted to give her that,

[00:16:12] the kind of love that I felt like I never got from either one of my parents. I always felt like

[00:16:16] their love was conditional and I wanted her to know that my love for her was unconditional.

[00:16:21] And so though it was very challenging at times, financially, we were always strapped. We,

[00:16:28] it was an amazing time. It really was. I feel so blessed to have raised her in my twenties.

[00:16:34] And I chose not to have biological children of my own. One, I never wanted to get pregnant. I think

[00:16:41] I would have been the worst pregnant person on the planet. I think I would have been horrific

[00:16:45] at being pregnant. But two, I knew in my heart after Adrian died, that if I had a biological child

[00:16:53] of my own, I would always compare that child to her inside. And that's not fair. That's a terrible

[00:17:01] thing to do. And so I knew that about myself. And so I actually had my tubes tied when I was pretty

[00:17:07] young in my early thirties. That's fascinating. And of course, a lot of people can be quite

[00:17:13] judgmental about that sort of thing as well. There's a lot of people in the world who seem

[00:17:18] to think that women are just there for that one thing and making a choice like that, which is

[00:17:23] clearly difficult, is somehow diminishes you in their eyes, which is a shocking thing to be hearing.

[00:17:29] But there are a lot of people without children. And there are a lot of groups, aren't they,

[00:17:32] for people who will get a bit older, which who don't have children. And often, and that relationship

[00:17:37] you have without children is quite satisfying. Because there are tons of things you can do now

[00:17:41] because you don't have children. Fantastic.

[00:17:44] Yeah, I live my life in reverse. That's what I tell people. In my twenties, I wasn't building a

[00:17:48] career. I was so focused on my sister. And it didn't allow room for me to build a career because

[00:17:56] it was a very important to me to be on her schedule. And that's how I accidentally ended

[00:18:00] up becoming a teacher, which I'm very good at, but didn't love doing. But I didn't build

[00:18:06] a career in my twenties. I was a parent in my twenties. I got married in my thirties. And

[00:18:10] then I really found my stride as far as my career in my late forties and, or sorry, in

[00:18:15] my forties. And, and now I'm in my early fifties. And so I just did things in reverse and

[00:18:22] that's okay. And what's interesting about the doctor who did the, who tied my tubes,

[00:18:29] I don't think she would have done it if I hadn't raised my sister.

[00:18:33] Because she knew I had already been a parent and she knew my reasons for not wanting a biological

[00:18:39] child. And because, and I say this because a good friend of mine, we shared the same doctor

[00:18:45] and that doctor would not give her a tubal ligation until she was 45 because she had never

[00:18:51] had children of her own. And whereas with me, the doctor was like, I completely understand.

[00:18:57] I totally understand your reasoning because I had a child and I had an amazing kid.

[00:19:03] Amazing.

[00:19:03] It is a fascinating, this is possibly a conversation we should have after this podcast, but it's

[00:19:07] staggering to me. The way Americans make decisions and laws about women's bodies.

[00:19:14] Yes.

[00:19:16] And getting the way, I can't think of many laws or processes or ethical conundrums about male bodies,

[00:19:23] but my God, what's going on? Anyway, as I say, that's the subject for another day.

[00:19:28] Let's get into liver cancer. Let's leap elegantly from one conundrum to another. Let's talk about

[00:19:37] liver cancer. So I wondered whether there might be a link between liver cancer and your mother's

[00:19:42] conditions. I don't know if that's, is that even a thing?

[00:19:47] Yes. I'm so glad you asked me that question. I think in over a hundred interviews I've done,

[00:19:53] no one's asked me that question that way. And my sister at 15 years old in 2001, when she was

[00:20:01] diagnosed was as far from the typical patient as you could get. The literature actually said non-North

[00:20:06] American male over the age of 50. And here was a 15 year old Caucasian female who had never been

[00:20:12] outside the continental U S whose actual blood work initially was all totally normal. That was the

[00:20:18] other thing that they just couldn't believe what they saw in a CAT scan. So they did a biopsy right

[00:20:23] away and they didn't like what they saw in the biopsy. And they came out and meanwhile, my sister's

[00:20:28] still in recovery. And the doctor said to me, why do you have custody of your sister? And we're going

[00:20:35] to test her for hepatitis. And I explained why I had custody at that point. I hadn't brought in the

[00:20:41] guardianship papers. And I said, why are you testing her for hepatitis? Because all I knew was hepatitis A,

[00:20:47] which, which can be caused, which is food and water contamination, right? And doesn't do permanent

[00:20:53] damage. It turned out my sister had chronic hepatitis B and hepatitis C with a, which the doctors

[00:21:01] determined that she got from our mother during childbirth because hepatitis B is transmitted

[00:21:08] through bodily fluids and hepatitis C through blood. And it was this perfect storm. Our mother was a nurse.

[00:21:16] So our mother was around infectious diseases. Our mother was also an addict who was shooting up.

[00:21:22] And when my sister was born in 1986, hepatitis C actually wasn't even identified or taken out of

[00:21:28] blood supply. And hepatitis C was, but testing prenatal mothers for hepatitis B was not standard

[00:21:37] of care yet. Had it been standard of care in 1986, my sister might be alive today. Goodness me.

[00:21:44] Yeah. So my sister actually had very common underlying liver disease

[00:21:51] that can cause liver cancer. And it just takes a very long time. If you have chronic hepatitis B and

[00:21:58] hepatitis C and it doesn't, and it doesn't always lead to liver cancer, but it certainly can. And the

[00:22:05] doctors also believe that she was probably sick her entire freshman year of high school. And yeah. And the

[00:22:11] only way she got diagnosed was I came home from work one day and she, instead of being at the kitchen table,

[00:22:20] doing her homework, which was a rule in our house, I found her on the living room floor curled up in a

[00:22:25] fetal position, clutching her right side, right where our livers are saying she couldn't breathe.

[00:22:32] And we went to her pediatrician who sent us to the ER. And what had happened is her liver had gotten so

[00:22:38] big, it was actually pressing on her diaphragm. And so she literally could not breathe. But for your

[00:22:44] audience, our livers don't have pain receptors, which is why liver cancer is often diagnosed in

[00:22:51] very late stages, because the liver has to become so swollen to actually hurt. Then you start having

[00:22:57] other symptoms. Yeah. So unfortunately, when my sister was diagnosed, it had already spread to her

[00:23:03] lungs.

[00:23:04] Oh, that's exactly right. And what's the prognosis of a liver cancer? Because it's a vital organ,

[00:23:09] isn't it? There's only one of them. So yeah, so I'm guessing other unless you have a transplant is

[00:23:16] is it really is it one of those cancers that can be turned around? Because a lot of cancers have good

[00:23:21] recovery chances these days. You nailed it with transplant, really liver cancer is one of the

[00:23:28] most common cancers worldwide. And one of the most common causes of cancer deaths worldwide. It's number

[00:23:34] three, actually. And yet it's actually highly preventable. But because of the reasons I already

[00:23:40] stated, it's usually not caught till later stages. And if you're beyond that surgery criteria where they

[00:23:49] can actually completely remove the tumor, or you're eligible for liver transplant, which is the ideal

[00:23:55] curative measure, there is no cure. And there are a lot more treatments now treatments that never existed

[00:24:03] when my sister was diagnosed, but there are a lot more treatments from targeted therapies to

[00:24:08] immunotherapies. But none of those treatments are curative, they're palliative. So people are

[00:24:13] definitely living longer and even living with a very good quality of life. But most of the time,

[00:24:20] it's a terminal prognosis.

[00:24:23] Oh, that's awful. So is there something we should look at in ourselves? Because I'm sure there are all

[00:24:29] sorts of lifestyle factors we can get into which are indicative.

[00:24:31] But is there anything we can look at in ourselves? And is there any sort of self care we can do to

[00:24:36] make sure that we are?

[00:24:38] Absolutely. Yeah, absolutely. The most common cause in Western countries like ours, of liver cancer used

[00:24:46] to be hepatitis C 10 years ago. Now today, it's fatty liver disease.

[00:24:53] Oh, is it?

[00:24:53] It is. It is. And again, not everyone who has fatty liver disease is going to develop liver cancer,

[00:24:59] but it is one of the most common causes today. And no one likes to hear this, but diet and exercise,

[00:25:06] eat in moderation. Our bodies were never designed to be obese. And obesity is linked to not only liver cancer,

[00:25:14] but 12 other types of cancer. And that again, this is predominantly Western countries. In Asia,

[00:25:22] hepatitis B is still one of the underlying causes of liver cancer. And then in certain other countries,

[00:25:28] it's still hepatitis C. But in Western countries, it really is fatty liver disease. And then also

[00:25:35] alcoholism, which I think is the one thing people do connect to liver cancer is alcoholism,

[00:25:39] even though that is actually one of the lesser causes of liver cancer. So I tell people that

[00:25:46] one of the best things you can do is ask for a metabolic panel when you have your annual exam,

[00:25:53] because it's a simple blood test. It is a checkbox, even in the US with all of our complications

[00:26:00] with health insurance. It's a checkbox, it's usually covered. It's no more complex than a CBC,

[00:26:07] which is usually done. And a metabolic panel will tell you how well your liver is working.

[00:26:15] And if your liver enzymes are elevated, then your doctor knows, okay, we need to go down the path and

[00:26:22] see why that is because they should not be elevated. Interesting. And I guess, and I know you're involved

[00:26:29] with a, we call it charity over here, but you called it not for profit over there. So can you tell us a

[00:26:33] bit about that work you're doing? Yes. So about a year and a half after my sister died, I was really

[00:26:40] looking for a way to channel my grief. I was extremely suicidal. I was 30 years old. And I just didn't,

[00:26:47] like I said, she was my North star. So I didn't really know how to be resilient in that moment.

[00:26:53] I didn't know how to move forward without her. I didn't know what life would look like without her.

[00:26:59] And I still have days where I struggle with that. And even talking about it, I'm tearing up. It's

[00:27:03] really hard. So I wanted to volunteer for a charity and I did all this research and there wasn't a

[00:27:12] single nonprofit in the US dedicated to liver cancer. And I saw the trajectory. Like I had no doubt in my

[00:27:21] mind that liver cancer was going to escalate. Like I could just see where it was going.

[00:27:26] And so there's this great Lily Tomlin quote where it's attributed to her, where she said,

[00:27:33] somebody, I thought somebody should do something about that. And I realized that somebody was me.

[00:27:37] Yeah. And that's exactly what happened. I was like, nobody's doing anything about this. We got to do

[00:27:42] something. And so I founded Blue Fairy, the Adrian Wilson Liver Cancer Association. And Blue Fairy's

[00:27:49] mission is to prevent, treat, cure primary liver cancer, specifically hepatocellular carcinoma,

[00:27:56] which is what killed my sister through research, education and advocacy.

[00:28:01] That's remarkable. And what does the charity do?

[00:28:06] We do a number of things. We focused on the education

[00:28:09] aspect very early on in our very first year. And I think that came from when my sister was diagnosed.

[00:28:16] They gave me all these one sheets on her chemotherapy. And I was like, okay, that's the

[00:28:21] treatment, but I need to understand the disease first. And they said, we don't have anything. And

[00:28:26] they were right. In 2001, there wasn't even a pamphlet you could give anybody about liver cancer.

[00:28:31] So her, the doctor, the surgeon who did her biopsy made all these copies from his medical textbooks.

[00:28:38] And let me tell you, Russell, I have never felt so stupid in my whole life. At that point, I had a

[00:28:45] bachelor's degree, but not in science. And I bought a medical dictionary, which I still have,

[00:28:51] and Grey's Anatomy, which I still have. They're two inches thick, each book. And I sat there and was

[00:28:57] translating this medical jargon into layman's terms so I could understand it. And that, I think that just

[00:29:05] stuck in the back of my mind. Again, not that I had this inkling at that time, I would ever start a

[00:29:10] nonprofit. But when we did, it was like, okay, we need to have patient education in layman's terms.

[00:29:16] And so we have patient resource guides that are shipped all over the world. They've been in over

[00:29:21] 700 treatment centers in the US. They're in English, Spanish, and Chinese. We have a number of

[00:29:27] different programs. We have an annual research award that we give out each year on my sister's

[00:29:31] birthday, which is April 8th. And yeah, so we have a number of things going on. And all of our

[00:29:37] programs are free for patients and families. Really? That's amazing. And I'm guessing you look

[00:29:42] for donations, people to help you support the financial health of the charity?

[00:29:47] Yes, absolutely. From grant proposals to individual gifts, major gifts, everything. If you run a

[00:29:56] nonprofit, diversify your funding. That's very important. Just a pro tip.

[00:30:00] I know. We were talking about that just a little while ago.

[00:30:03] We did.

[00:30:05] And I'm going to be astonished if you haven't written some sort of book about this process

[00:30:08] as well. Have you done that yet?

[00:30:10] Yes. I've written one book and edited another. So my book is titled Better Off Bald, A Life

[00:30:16] in 147 Days. It came out in 2019. And it follows that 147-day journey with my sister. And it's

[00:30:25] written like a journal because I kept a medical diary when she was sick, a day-by-day medical

[00:30:31] diary. And she also kept an online journal. By day three, I introduced the chapters with

[00:30:37] little segments from her journal. So you'd see her point of view as the patient versus mine

[00:30:43] as the caregiver and parent. And then I use flashbacks to fill in that seven years prior

[00:30:48] to cancer. So you get this full picture of our lives together. And yeah, so that book came

[00:30:54] out in 2019. And then I always knew I wanted to publish my sister's journals and her point

[00:31:03] of view. She was just an incredible writer, voracious reader, a student. And she started

[00:31:10] writing in an online journal a year before she was diagnosed and continued writing into it

[00:31:15] until about three weeks before she died.

[00:31:17] Wow.

[00:31:18] And so this past March, we published her journal, but it's also her poetry, some stories and artwork.

[00:31:28] She was a fantastic artist. Her artwork has been displayed in three LA galleries. She won a lot

[00:31:35] of awards for her artwork. And so I think of it more as an art journal, but it's titled I'd Rather

[00:31:40] Be Dead Than Death, A Young Woman's Journey with Liver Cancer. And all the proceeds from that book go to

[00:31:47] Blue Fairy. And some people are put off by the title. But it's what she said. When she found out

[00:31:56] that one of the chemotherapy drugs was going to cause hearing loss, and it's not it may cause hearing

[00:32:03] loss, it's it will cause hearing loss, this drug. She lost her mind. She was a budding musician.

[00:32:09] Music was her life. And she just became unglued and yelled at the oncologist and said, and me,

[00:32:18] I'd rather be dead than deaf. And so we made an agreement with her. She had a very strong

[00:32:24] personality. We can't tell. We made an agreement with her that try this drug. And if you have any

[00:32:32] hearing loss, we'll stop it. Yeah. And so she agreed to that. And after two rounds of that drug,

[00:32:39] which was just awful, and didn't make a difference. She did have some hearing loss. And she said,

[00:32:45] okay, I'm done. And she said, find something else. Like she said, write to the doctor. She said,

[00:32:49] my sister has this book on chemotherapy drugs. There's over 200 find a different one. I'm not

[00:32:54] doing that one ever again. And she didn't. It's one of the, it's one of the horrible things about

[00:33:00] cancer is that the treatment is so terrible. And I've got a friend of mine going through a cancer

[00:33:08] process at the moment. And it's, there are points where she has, she said, I don't know whether I

[00:33:13] should go through this treatment process. I'd rather die with dignity and do that. It was a

[00:33:18] conversation we had. And I think a lot of people have this conversation. She went through the

[00:33:21] treatment, obviously. And, but it's a brutal treatment regime and there's no other way of

[00:33:26] doing it. And you need resilience and forbearance and patience and just, to just cope, don't you?

[00:33:32] It's, but you're good. You're right. You're right. There are over 200 drugs. And the trouble is that

[00:33:37] doctors have a sort of a tried and tested path, don't they? Everybody gets stuck down that path.

[00:33:42] And it's, it's knowing that you have rights to be able to ask, I think, or have someone like you

[00:33:47] and your, and your team to shout at your behalf. Cause that's what's important. It is

[00:33:52] that thing, isn't it? You've got to be assertive in your rights and your needs with the healthcare

[00:33:56] professionals. It's really important. It's so important. And the patient needs to focus on

[00:34:02] getting right. That's their job. They need to focus on just getting well. And so I always encourage

[00:34:08] patients and it always breaks my heart when they don't have this person in their lives, but I always

[00:34:12] encourage them that their spouse or their adult child, or their, it might be adult sibling.

[00:34:20] Somebody has to be the advocate for them because again, they need to focus on getting well.

[00:34:25] And it was funny. I found out later, we had a few favorite nurses that I still keep in touch with.

[00:34:31] And they told me later that no one liked me because I was always questioning. They all love my sister,

[00:34:37] but nobody liked me and I didn't care. I wasn't there to be liked. And no, I had to,

[00:34:44] for example, I had to fight six weeks with the health insurance. I had health insurance for my

[00:34:51] sister through a loophole in the California law, but not for myself. And, but thankfully had health

[00:34:57] insurance for her, but the way it was structured, they would not allow me to transfer her to UCLA.

[00:35:03] And here we were at children's hospital, Los Angeles, one of the top children's hospitals,

[00:35:09] top 10 every year in the U S but she didn't have a pediatric cancer. She had what was considered a

[00:35:17] very adult liver cancer. And so I was dealing with doctors that either had never seen her cancer before,

[00:35:24] or had seen like six cases in their entire careers. And I wanted to transfer her to UCLA where there was a

[00:35:32] liver cancer center at that time. And it's still there today. And they saw her cancer every single

[00:35:38] day. And they also were willing to look at clinical trials for her, even though she wasn't 18,

[00:35:44] they were willing to find a way around it. And it took six weeks of phone calls Monday through Friday

[00:35:52] to get the insurance to change. So, and that took so long, it really took a long time. So we finally did

[00:36:01] transfer her care to UCLA and they were incredibly respectful of her wishes, really respectful. And

[00:36:09] one of the things that she said was, I'm tired of going to the hospital for chemotherapy and the

[00:36:15] chemotherapy they did at the hospital wasn't working. So find something else. And I want to do it

[00:36:21] outpatient. And that's what we did. I think you'd be a great advocate. Okay. Yeah. I know if I get into

[00:36:29] some sort of illness, I'm going to be giving you a ring and having you walk up in Birmingham,

[00:36:34] England. Please do. Please do.

[00:36:37] Every patient needs someone in their corner. They do. Absolutely.

[00:36:41] Yeah. And you're right. It's not about being liked. And I think I live in the part of the world

[00:36:44] where it's very focused on being liked. And you just wonder how many times you don't,

[00:36:49] you're liked, but dead rather than being disliked and unhealthy.

[00:36:53] Wow. God, that is so well said. That is so well said. There is a book. I have it on my shelf. I

[00:36:59] haven't read it yet. It's titled The Courage to be Disliked. I believe that's the title. And,

[00:37:05] and I think just the title alone is what caught my eye. It was like, yeah, you have to, you, you really,

[00:37:12] other people's opinions about me are none of my business. Right.

[00:37:15] Yeah. And I didn't care what those doctors and nurses thought as long as my sister was getting

[00:37:22] the best possible treatment. Yeah. And I often think, I often think that healthcare people

[00:37:28] in a funny sort of way, they like the non-standard challenge. They like the person that's different.

[00:37:34] They're like, when I go anywhere for health treatment, I say, I've got this particular

[00:37:37] situation. They say, oh, that's interesting. Tell me more about that. Because I think if we're not,

[00:37:42] and often people are going into hospitals or healthcare settings where they, it's not something

[00:37:47] they're used to doing and they can be frightened and overawed and scared for themselves and such like.

[00:37:51] But if you engage healthcare people in a sort of an adult and pretty reasonable way,

[00:37:56] an assertive way, obviously, it's astonishing how they can plumb this sort of depths of their

[00:38:02] kit bag of resource and such, and then get interested. So it is quite, as I always think,

[00:38:07] if you can spark a physician's interest, you've got someone who's going to be on your side.

[00:38:10] Yeah. And if they're not, guess what? You can fire your physician.

[00:38:14] Yeah. You can in the States. We can't.

[00:38:18] Oh, that's terrible.

[00:38:19] Because we don't pay.

[00:38:21] That is terrible. You can't get another physician if you want one?

[00:38:25] Not in the way that you do in the States.

[00:38:27] Oh, wow. Oh, wow. Okay. Wow.

[00:38:30] Yeah. It's a different system.

[00:38:32] Yeah, you do, but you really do have to, I love the way you phrased it. And a really good

[00:38:36] physician is curious, right? And they do want to learn more. And I have an excellent primary care

[00:38:42] physician here in Birmingham, and I got very fortunate to find him early on. But even he and

[00:38:48] I, we had a hiccup in our relationship. This was a few years ago when I started losing weight

[00:38:53] dramatically. And I record all of our appointments on my phone, and he's totally okay with that. And

[00:38:58] it's for me, it's not for him. It's for me to remember what he said so I don't have to take notes.

[00:39:06] I said, something's wrong. Like, I don't just lose weight like this. And I'm losing muscle mass.

[00:39:11] And he didn't blow me off, but he just didn't take me super seriously. And then I followed up

[00:39:17] again with him two months later. And I said, okay, come on. Something is wrong. And by that point,

[00:39:22] I was 98, 99 pounds. And I just looked like a walking skeleton. I looked terrible. Even though

[00:39:27] I'm pretty short. I just, I looked awful. And he said, okay. And he said, you're right. And

[00:39:34] something is wrong. And I underwent all this testing. And I had long COVID. I had had a really

[00:39:41] terrible case of COVID. And, and then I ended up having long COVID. And I ended up having clots all

[00:39:49] through my lungs. My lungs look like spider webs. I had so many blood clots in my lungs. And I was very

[00:39:56] fortunate though, that again, he took me seriously. He is now one of the leading experts on long COVID in

[00:40:03] the country. And he put me on this incredible regimen and it took about eight, eight to 10

[00:40:08] months to fully recover. And I did, but even he will admit that first time. Yeah. I didn't really

[00:40:13] listen to you. I didn't think losing weight was really bad, but he didn't really pay attention.

[00:40:19] It is fascinating. So we all have these tales, don't we? So a friend of mine who was going through

[00:40:24] the process I mentioned earlier that she went to doctors two or three times because she was bloating,

[00:40:29] the reverse thing, really bloating, bloating, and in a lot of pain, fetal position on the floor sort

[00:40:34] of thing, but lived on her own with cats and dogs and such like. And that's the sort of nature of

[00:40:40] things. But people were saying, this doesn't sound right. So she went for a biopsy and, and, and the

[00:40:45] doctor said to her, you need some anti, you need some anti wind tablets. And she got home a day later,

[00:40:53] she collapsed on the floor. Someone had come around to sort out a pool, this took it to emergency room

[00:40:57] and she had an infection caused by the biopsy and she had stage four cancer.

[00:41:03] Oh my God.

[00:41:03] And someone was giving her anti flatulence pills because, and she's a remarkable person and she's

[00:41:10] going through this stages now and she's, look, she's looks like you're on the upward side,

[00:41:14] but that's, and that's the thing about being nice.

[00:41:17] Yes.

[00:41:17] And being on your own and not having an advocate and being overawed and being a bit grateful

[00:41:22] because at last someone's seen me and all that sort of stuff. And it's, that's, we've got to get

[00:41:27] over that. And I agree.

[00:41:29] And I think there's the opposite side of this is that people are in the emergency rooms because

[00:41:33] they've got a crack mail.

[00:41:35] Yeah, that's true. There are those people.

[00:41:37] It's the other end of it, isn't it? It's the people who are most stoic and often the most ill.

[00:41:42] That's true. But if I have to choose between being liked and being respected,

[00:41:46] I'd rather be respected.

[00:41:48] Yeah. That's a question I ask of leadership people all the time. And there you go. I suspect with

[00:41:53] you though, that's true. And that's very good. So how do people, because I've just looked at the

[00:41:57] time and I'm really sorry because I'm aware of the time I have allocated. So I'd really do

[00:42:03] apologize. I find it absolutely fascinating. I don't know if anyone else is still listening by now.

[00:42:06] I'm sure they are because it's been fascinating. And, but how can people find out more about the

[00:42:11] work that you do, find out more about this nonprofit and just say the names of your books again,

[00:42:15] if you please?

[00:42:16] Sure. So my book is Better Off Bald, A Life in 147 Days. You can buy it wherever you buy books,

[00:42:24] or you can go to betteroffbald.com. And my nonprofit is Blue Fairy, the Adrian Wilson Liver Cancer

[00:42:32] Association. The book that my sister wrote is I'd Rather Be Dead Than Death, A Young Woman's Journey

[00:42:39] with Liver Cancer. And that's also on our website. And you can go to bluefairy.org. So that's B-L-U-E-F-A-E-R-Y.org.

[00:42:49] And we spell it with an E instead of an I, because that's the way my sister liked it.

[00:42:53] It's the Gaelic way of spelling it. So why not? It's probably the original language. That's great.

[00:42:58] She'd always wanted to go to Ireland.

[00:43:00] Did she?

[00:43:01] Yeah.

[00:43:02] It's been an absolute joy, Andrea. It's been time has flashed past and thank you so much for

[00:43:07] spending time with us today. I really do appreciate it.

[00:43:09] Thank you so much for having me.

[00:43:11] You take care.

[00:43:13] Hi, thanks for listening. Hopefully that was a useful and interesting episode.

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