Tracy Maxwell, a cancer survivor and author of “Being Single, with Cancer,” joins Peter McGraw in the Solo Studio to talk about the unique physical, emotional, and practical challenges singles face undergoing cancer treatment and how to respond to those challenges.
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Listen to Episode #192 here
Being Single With Cancer
I’m here with a remarkable solo, a six-time cancer survivor who’s written a wonderful book that dives deeply into the unique challenges that singles’ face when diagnosed with cancer. Welcome, Tracy Maxwell.
Thanks. It’s good to be here.
You authored the book Being Single, With Cancer: A Solo Survivor’s Guide To LIFE, LOVE, HEALTH And HAPPINESS. I am eager to talk to you about life, love, health and happiness because there’s a lot in this book. You went well beyond the blocking and tackling that I would have expected from a book about how to deal with cancer as a single person. Thank you for that. The obvious thing is giving your ongoing struggles. Why did you write this book?
Speaking of my ongoing struggles, I’ll give a little disclaimer right at the top. I’m in chemotherapy. I’ve had 4 rounds of chemo out of 6. I’m dealing with some side effects in a little bit of chemo brain. I’m sure your audience will be patient and understand if I mess up or can’t remember some statistics or facts. Please don’t ask me about any statistics, but I’m happy to tell a lot of stories.
As you know from writing several books you have, you forget. This book has been out for many years now. I’ve been refreshing myself a little bit on it. The reason I wrote it is because as soon as I was diagnosed, my first thought was, “Who’s going to take care of me? How am I going to get through this as a single person?” I went looking for resources and found next to nothing. The American Cancer Society had a little bit on their website about dealing with it as a single person but so little.
It’s way down on the bottom right-hand corner. It’s deeply buried.
I didn’t find it super helpful. A year after my diagnosis on my one-year cancerversary, I started blogging about my experience.
This was many years ago.
I was diagnosed many years ago. My cancerversary is May 23rd. That’s a date you never forget. I started blogging about it to help other people. I had a friend who was managing a new lifestyle website for women. She asked me to blog there at first. I did that for a little bit and then I started my own blog and started blogging for myself. I got a book deal the way no one ever gets a book deal. A publisher found my blog, reached out to me, and offered me a book deal. I was very lucky.
There’s a lot to unpack here. I think you look great. Six times around, you must be like, “Here we go again.” You talked about the side effects of chemo and chemo brain. We had to be very special in terms of picking the time and date of this episode, and even then, it wasn’t ideal. You have these ups and downs. What else is going on?
Chemo is hard. After I did it many years ago when I was first diagnosed, I said, “I would never do it again.”
It’s like parenthood. You have a kid and you are like, “I’m never doing this again,” and then time passes.
I say that all the time. People remember that they would never have a second kid. I’m doing a combination, which a lot of chemotherapies work in combination with two drugs. Sometimes three. It’s a lot of awful chemicals and stuff that you would never want to put into your body. When the nurses bring it into the room to give it to me have to wear special outfits and gloves. The chemo and the bag of the drugs is covered with this dark hood.
I imagine a skull and crossbones on it, metaphorically.
That’s what it feels like. It’s a little disconcerting when they are concerned about it getting anywhere on their skin and yet we’re putting this into my body.
In a nutshell, that reveals how devastating cancer is to the body that you’re willing to do this other thing that’s incredibly bad for the body in order to try to eradicate the cancer.
I talk about this a lot in my book. There are a lot of different choices that people make. Some people choose not to get treatment at all, depending on where you are, what stage, and what you’re dealing with. I believe that more people, or at least as many people, die from the treatment as they do from the disease. It is a tough decision to make. I’ve been super fortunate that I have a rare, which means we know almost nothing about it, no one’s studying it because only 2% of people get it.
Two percent of people who get cancer get this.
I think 2% of people get ovarian cancer.
It’s very specialized.
Many years ago, when I was diagnosed, I went for a second opinion at MD Anderson. I’m thankful that one of the doctors was straight with me. He said look, “The drug companies can’t make any money off of this population because it’s too small. There’s not the R&D to study it. We’re probably never going to know what’s effective with your type. We can give you something and guess.” That gave me permission to say I’m not going to do chemo.
Yet you’re doing it.
In my first four recurrences, I didn’t do it. I got diagnosed the first time. I had surgery. I did six rounds of the same chemo that I’m doing, Taxol and Carbo, for those in the know, and the cancer went away for four years. The next time, I had a complete hysterectomy. I didn’t do any kind of follow-up therapy, and the cancer came back in four years. I had surgery again, and the cancer came back in three years. I had surgery again, and the cancer came back in four years. It came back quicker than four years, but it’s a very slow-growing cancer. That’s a positive side of things.
We would watch it. We knew the pattern at that point. I treated it with surgery. I was very lucky for 16 years at a very high quality of life and those 4 years in between surgeries. I had surgery and I never felt like I recovered from it. In February, I’m still in low energy and felt terrible. My pants don’t fit. Ovarian cancer is a weird thing because half the people who get it die from it because it’s usually diagnosed very late. The symptoms are very similar to what women deal with every month when they have their monthly cycle.
You might not think about it now in the same way.
You don’t necessarily think it’s anything strange until the tumors get so big and people’s clothes don’t fit.
I wanted to ask you about that. I have very limited experience with cancer. I’ve had a little bit of skin cancer, but that is very benign. It’s mostly annoying.
I’ve had some of those. I am familiar.
That’s the only thing I have. Personally, my father died of cancer. He had non-Hodgkin’s lymphoma that then spread to his liver and lungs. He had about a three-year slide. It was pretty awful in the end. He did not respond to any of the treatments. Maybe it prolonged his life a little bit, but it was not good. How do you figure out you have cancer?
There are a lot of people who do an annual physical, your doctor taps on your body, maybe have a blood test and they ask particular questions about your stool, your energy, and all these things. There may be some change that they notice, but for a lot of people, there’s like, “There’s something wrong with my body.” They don’t know what it is, and then they go see a doctor.
That’s an excellent question because there are screening tests for certain kinds of cancer that we all do.
I shut it in a box and put it in the mail for colon cancer.
This might be better than a colonoscopy.
I don’t know. I know a nurse who is screaming at me to go get a colonoscopy.
I hate to admit as a six-time cancer survivor. I’m in that age group when I should have had one and I haven’t. I did the box thing and mailed it off. My oncologist has been bugging me about getting mammograms. I don’t like them because they admit a lot of radiation, and I’ve already had a lot of radiation.
I got a prostate check now.
There are those things. If you hit a certain age, there are some tests you should do to be safe and then there are some times that you feel off. For me, I had bad pain on New Year’s Day in 2006. I had not been out partying the night before. It wasn’t a hangover, but I had horrible pain all day. I didn’t get out of bed. Finally, around 9:00 PM that night, it subsided enough that I could go to sleep.
It hit fast.
I found out why in this case. About 3:00 in the morning, I woke up again in bad pain. I called a friend of mine and said, “You need to take me to the hospital. You might need to come help me get dressed because that’s how bad it is.” I went to the ER and they did a CT. I had a cyst on my right ovary that had burst. What caused the pain was the bursting part.
I want to put a pin in something you said, which is, “I called the friend and said, ‘You need to come over.’” I’m sure we’re going to return to that. First of all, how fortunate to have a friend that you can call where this is not a question. This is, “I need you to.”
“It’s 3:00 in the morning and you need to come here.” He is a friend. He was also my boss, but he lived closest to me. That’s how I chose him. I trusted him. I knew he’d do it, but he lived close to me. I knew he could get there fast. My other option would have been to call an ambulance. How many friends can you call at 3:00 in the morning and say, “I need you to come take me to the ER?”
I want the readers to reflect on that question because if the answer is low, it means you may have to make some changes to your life. That is, “How many friends can you call at 3:00 in the morning when you’re experiencing severe abdominal pain, so much so that you may be unable to dress yourself?”
That is something that I talk about a lot in the book, helping people take stock of their communities. That’s a great way to start because asking, “How many people in my life can I call?” I struggle with that still, even after seventeen years with cancer like, “Who can I call and ask this?”
It doesn’t feel like it’s too much of an ask. The thing about this is that if I get that call, and even if the person is not super close to me, I’m going. It may be awkward. I may not be commensurate with the quality of our relationship or the status of the relationship, but I’m not going to hang up on someone who is having abdominal pain in the middle of the night and can’t dress themselves. The appropriate answer is, “What is your address? I’ll be there as soon as I can.” It’s nice not to have to put someone in that situation where they feel like, “Why am I getting a call from Peter? I barely know him.”
That’s one of the things that’s interesting about this experience. The people who show up are often not the people that you expect. Some of the people that I would have said are closest to me, and for whatever reason, who knows they can’t handle it? It’s too much for them. They have a personal experience like you do that was traumatic, but people always showed up and sometimes in surprising ways.
Someone sent me a $500 GrubHub gift certificate so I could get whatever food I wanted, whenever I wanted when I didn’t feel like cooking. How generous. These are people who have shown up for seventeen years with that kind of generosity. It’s amazing. It would be easy to be upset about the people who didn’t show up that you felt like should have and instead, I try to be grateful for the ones who do show up and sometimes incredibly surprising, generous, loving, and kind ways.
People often reveal themselves not when things are going well but know when things are not going well. It’s often weakness, not selfishness. It’s because they are not up for the hard work associated with tragedy. There’s something about this book. I wish it had a different title because I get the title Being Single, With Cancer.
That’s right on the nose.
It’s like, “I just got diagnosed with cancer, and I’m single. Let me see if there are any resources.” In some ways, the best title would be, You May Stay Single And You May Someday Get Cancer, Best To Be Ready For It Before The Diagnosis. I know Bill Publisher will go with that title. This is not a book for people who are single with cancer. This is a book for people who are single who may face a challenge of any kind, but especially some physical challenges, disability, illness, or sickness because it can be very isolating and scary. It doesn’t have to be cancer. It can be like a major bout of the flu where you’re dehydrated.
This happened to me once. I was outside of my state. I was in a girlfriend’s apartment. She was away for the holidays. I was doing a mental calculation of, “Am I was sick enough that I need to go to the hospital now?” I did not know the right way to answer that question. What I’m saying is this book is much bigger than what its title suggests.
A lot of people have read the book who are cancer survivors going through cancer and not single have gotten a lot out of it. A lot of people who are single but don’t have cancer have read it. Also, what you said saying, “Something’s probably going to happen to me someday, and I want to know how to be prepared.”
I had a situation where I was I was in another country. It is a one-way street. This is Bogotá, Columbia. You got to be very aware of the traffic. I looked right. Everything was fine. I’m about to step into the street and this guy flies by the opposite direction on a bike. Half a second earlier I step, I get smashed by this guy. How bad is that? I don’t know, but it’s bad.
I can tell you it’s bad because it happened to a friend of mine in Barcelona on a scooter. She’s also an ovarian cancer survivor. That’s how I know her. I was in Spain at the same time. We were going to miss each other, but she ended up in the hospital in Barcelona for one month with 1 broken leg and 2 broken arms. It was horrible. Not just that there was no air conditioning in this hospital, but it was 100 degrees. She doesn’t speak the language. There were many things about it that were bad. She’s not sure if her insurance is going to cover any of this. She doesn’t know how she’s going to get home. it could be bad.
We’re going to get into this because this issue of having someone who can advocate for you is incredibly important for sure and is often built into couplehood. That person may not be good at advocating for you, but at least there’s a default person to do that. We’re previewing this.
Can I say something about what you said before you ask a question? I have friends who’ve dealt with health issues and they are married and their spouses have not necessarily been.
Let me be the bad guy here, if I may. There is this thing about, “Tracy, are you sure you don’t want to find someone? You’re going to grow old alone. What if something happens to you?” There’s this default thinking that a spouse and/or children are going to be a support system for you as you age, especially should you end up having something go wrong with you. At first blush, that is a compelling argument.
I don’t think that’s the best reason that you would end up getting married, but it is a very common thought. I’ve heard it. Most people reading now are shaking their heads saying, “I’ve heard this.” I talked to someone whose in a relationship. It’s an interfaith and race relationship. She’s wondering if she’s going to get accepted by the family. One of the things is the parents are like, “We now no longer have to worry about him anymore because he has a wife.”
I used to say it myself, “If I don’t have kids, who’s going to take care of me when I get old?” until my friends said to me, “There’s no guarantee my kids are going to take care of me when I’m old.” I’m like, “That’s a good point.” That is a super crap reason to have kids.
I’m not sure the person who chooses to have kids so they have someone to take care of them when they’re old are necessarily the going to be the best parents to those kids right to begin with because you’re like, “Can’t you learn to parent yourself?” Bad guy mode off. You were saying that this belief is pervasive and you interact with a lot of cancer survivors. Some of them have spouses, and some of them don’t have spouses. How do those spouses do?
Sometimes they are amazing. They do everything that the person needs. Sometimes because you have that one person, the rest of your tribe may think, “They’ve got it handled. They’ve got someone right there with them. They’ve got a spouse or they’ve got a child. They’ve got someone who’s there.” Some of my friends have even told me they have felt bad about asking other people for help because they do have that person there even if that person is not doing a great job. I’ve had coaching clients who had bad situations and felt stuck because they were in such bad shape physically. They are in horrible shape financially. They can’t take care of themselves in either of those realms. They feel trapped. They’re in bad marriage.
Their partner is not good at those things.
Not only is it not good, but in some cases, it is abusive and makes it worse. There’s research about this. There are studies showing that people’s outcomes are way worse if they’re in an unhealthy relationship. Some friends and I talked about a friend of ours whose consensus from all of us was she might have lived a lot longer if she had found a way to leave her horrible relationship.
Social support is incredibly important for dealing with any tragedy. One of the most profound interventions that you can have is to have a supportive environment, friends, family, clergy and therapists.
There are tons of research on that. The research shows that single people have a much wider social network because they’re not relying on one person to fulfill all those social needs. They’re out in the community volunteering and spending time with lots of different groups of friends. That’s helpful.
I feel like there’s got to be a plot to a movie. Maybe we’ll turn your book into a movie. We’re going to take some liberty. It’s like the day that one of the spouses who are going to ask the other one for a divorce is the day they get diagnosed with cancer.
It’s funny you say that because I tell a story in the book about my friend, Heather, who left her husband. She got married young. She left her husband. In two weeks later, she got diagnosed with breast cancer. She had to young kids. Ex was not involved and not around. She had about $20 in her bank. Her story is incredible, what she overcame. Now she’s a nurse. She is very well known in the cancer community and doing a lot of giving back, but she had a tough struggle.
Are you still coaching?
Now I’m coaching people to write their books. I’m not coaching so much on cancer.
There’s this other flip side to this where someone gets cancer and not only is their partner not well-equipped to do this to support them, but they can’t handle it so much that they break up, leave or divorce them, or something like that.
That happens a ton. I’ve heard a lot of stories about that. I surveyed 100 single cancer survivors when I wrote the book to find out what their experiences were. I interviewed that group of 100. I did hear that a lot. A lot of people were in not super serious relationships when they got diagnosed. It wasn’t surprising that the people disappeared. Some people hung around for a while and hung in there through the treatment and then left afterward. I’ve heard a lot of stories of a diagnosis leading to a divorce.
Am I surprised by that? I’m not. In part because we already have a 1 in 3 divorce rate in the United States. What causes divorce is challenges within the relationship. When do people reveal who they are? They reveal who they are when things are tragic, not when they’re comedic. I’m not surprised by that. You have a friend who broke her leg. Is this a friend in Spain or a different friend?
It’s a different friend.
You have lots of friends who break their legs.
I have broken my leg a couple of times.
Can we talk about this?
Totally.
She was lamenting that her husband wasn’t as supportive.
Her husband’s an awesome guy. I’ve a lot of friends who have marriages I envy and husbands who have been amazing even to me. They let me borrow them occasionally to help around the house and support. It’s awesome. This is one of those guys who’s super amazing.
It’s like the neighborhood husband. They send him over to hang this picture.
It’s not like this guy is a jerk like he wasn’t going to be helpful. He’s an awesome guy, but it’s hard to be a caregiver.
Especially, if it’s not in your nature. Think about you’re married to a construction worker. This guy goes off every day. I’ve talked about these guys because I see them working. That guy can be tough as nails. He’s working in jeans when it’s 100 degrees and he’s also working in the same jeans when it’s 10 degrees. It’s not that this man is giving. He’s giving. He’s earning money. He’s showing up for work. He is not a deadbeat.
He may be rather limitedly equipped to change and become a caregiver because when has he ever been given a chance, mentored, or role model any sort of feminine or caregiving energy? He’s like, “I’m doing what I’m supposed to do. I’m playing my role,” and then suddenly he’s being asked to play another role. He may be able to pull it together, but that may be very difficult for him.
His wife is a super independent badass, has it all together, and are able to handle the stuff. He’s never had to take care of her in that way. That was the case for me too. I’m super independent and strong. I had this idea when I first got diagnosed, like, “I should be able to power through this and handle this.” I was lousy at asking for help. The thing that cancer has taught me above everything else is, one, for any of your readers who might be familiar with the Enneagram, I love that tool. If you are not familiar, I recommend you check it out. It’s Myers-Briggs but way better with your spiritual.
That’s fair way to say it. Myers-Briggs is pretty trash.
I took Myers-Briggs. I didn’t realize it was the Myers-Briggs. My type is exactly the same as it has been every time I’ve got it in the many years.
The good thing about Myers-Briggs is it is always come up with the same thing.
If you are familiar with the Enneagram, I’m a Type 2, which is a helper personality. I love being helpful. It’s no surprise. I’m a coach. I like to give back, and I found lots of ways to do that throughout my career and my life.
This is not ideal, and you’re here.
You don’t know what you are? You should check it out. It’s pretty cool. You might learn about yourself as I did.
To recap here for a moment, the fact that you may be partnered up is no clear solution to the physical challenges that you may have, which is what we’re about to get into. Just because you’re single doesn’t mean that you are alone or worse off. If people take anything away from this conversation, would you say that it is to ask for help?
A hundred percent. As I was saying about being in Enneagram, because we always want to be helpful, we’re sometimes not even aware of what our own needs are. When people would ask me, “What do you need?” it wasn’t like I was not telling them. I didn’t know. I had no idea. In order to ask for help, you have to know what you need. Sometimes that’s hard when you’re newly diagnosed. After you’ve been at it a little bit, you start to figure it out. I figured out, “If I’m going to get help with this and I have to have help, I can’t do this by myself. I got to sit down and figure out what I need.” It is taking an inventory and thinking about not just, “What’s the bare minimum of what I need, but what do I need to thrive, be happy, and feel loved?”
If you’re going to survive, one of the best ways to do this, and some of this is research related, but then some of this is like woo-woo me doing too many mushrooms, is you want to be at your best. You want to give your body the best mood, emotion, and perspective that you can in order to handle the chemo and to let your body heal itself and battle this. I like this idea. I have this model about taking care of your foundation and then flourishing. What you’re suggesting is, “Don’t just think about your foundation. Think about what’s going to help you flourish when you’re thinking about what you need to ask for.”
This might be a little bit of an aside, but a friend and I were having a conversation once. She was in a difficult marriage and she kept giving her husband all these ultimatums about what he needed to do for her to stay.
You can only do an ultimatum once.
She did it multiple times.
It’s not an ultimatum when you’re like, “This time, I really mean it.”
It was about different things. He do the thing, but then she’s like, “There’s this other thing.” I said, “What’s going to take for you to be happy in this relationship?” She was like, “This is what I needed to do so I can stay.” She went, “I’m never going to be happy.” I’m like, “What are you doing?”
You’re setting him up to eventually fail.
They got divorced after three years.
It sounds like you helped.
I hope so.
What’s on this list? I recognize the list depends on the person, but what are some of the kinds of things? What happens is this is you don’t know what you don’t know. I can imagine one of the big ones is, “Who do I want to be my representative with the health community, and then how do I then give them the power to do that?” One of those nasty things of having marriage elevated is that when you have a spouse, they’re automatic like, “I’m so and so’s husband. This is what’s going on and on,” versus, “I’m so-and-so’s friend,” and then they’re like, “We can’t talk to you without supportive documentation.” One of those things is who that person is.
I’m a little bit sad that I’ve had cancer for many years and I didn’t know this until then. I know you’ve readers all over the place. Here in Colorado, if you don’t have a medical power of attorney filed, anyone who can submit themselves as an interested party in your healthcare can have a say. They will call your six-year-old nephew and ask him what he thinks. They want as much input as possible, but what if those people all disagree? Your question is a great one and, for me, it’s evolved over many years with cancer of what is on that list of needs, but having a medical power of attorney and disability insurance are some of the best advice I can give to anybody.
I’m working on a project about personal finance in solos and how they have different needs because they don’t have the hedge of second income. They’re not sharing expenses oftentimes. There may be a greater need for disability insurance. Buying a warranty for an electronic device is a terrible thing. That’s bad insurance. Good insurance protects you from calamity. Disability insurance should often be on your radar as a single person more so than for escalator riders.
Even for me too because I’m not only single, but I’m self-employed. I don’t even have the paid sick days or health insurance provided by my employer. It was even more important to have that. I’m super grateful that I did. I’ve had it the whole time I’ve been dealing with cancer. I neglected to use it for fifteen years because it didn’t occur to me. That’s me being super strong and independent. Now I’m grateful that I have it because I worked full-time the first time I did chemo many years ago. Now I don’t know how I did that. I’m barely working.
We’re now talking about the pre-list. While you’re 100% healthy, think about who would be your medical power of attorney or someone you trust. You’re going to have to have a conversation with that person. This is, “Would you be willing to do this for me?” Have disability insurance. What are some other things pre-cancer that people should be considered? Do you have some friends and healthy relationships with family members? Are you involved in your church? Are you involved in some community organization? Are there people that you can call at 3:00 in the morning when you’re sick that you can’t dress yourself?
Please take stock of that now. If you have five or fewer, then you might want to think about that. Do you know your neighbors? My neighbors have been super helpful when I say, “I need you to move this thing or bring in this box or water my plants when I’m away at the hospital.” That’s been great. A lot of us don’t know our neighbors now. I live in a condo complex where there is a lot of turnover. I’ve had great relationships with people, and then they move, die, or whatever. It’s an ongoing thing to keep getting to know your neighbors.
Let’s do a little role-play here because I’m one of those people who have plenty of people to call, but I keep to myself in my building. I’m friendly. I’ll chat with people in the elevator, but I don’t want to socialize. There’s a guy across from me, a very nice gentleman who has a lovely dog around the same age, though he looks a lot younger and good looking. I feel like I need to have a conversation with him that says, “I know you live alone. I live alone. I want to say if you’re ever in a bad spot and I’m across the hallway, don’t be afraid to knock hard on the door. Is it appropriate to then say can I ask the same of you? I’ll try not to.”
That’s a great way to do it. I’ve lived in my building for many years. I was close with my downstairs neighbor who was a lot older and she has passed away. Other than that, I did not have a lot of people in my building either. I kept to myself as well. It was the pandemic, and because I have an outdoor space and I would see people when I was out on my deck, I have since the pandemic gotten closer with lots of my neighbors around me. It has been great. I haven’t called on them a lot, but it is nice to know they’re close.
Having cancer, even if the treatments are going well and if you’re optimistic, there’s this cloudiness of, “Was it going to come back?” You know what Monday’s going to feel like. Anything you can do to remove more worry and anxiety from your life seems like a worthwhile thing. There’s a little bit of unpleasantness. That’s going to be an awkward conversation when I see him and I risk him saying no. You got to be a monster like, “No, Peter.”
I have friends who’ve said no to me and it was super disappointing. I’m grateful that they were straight with me about their capacity.
I take it back. I’m being cheeky when I say that, but they’re doing you a favor when they say no. When I throw a party, I want a yes or no. Don’t give me a maybe.
If it’s not a hell yes, it’s a hell no.
Don’t give me a yes and then be like, “Sorry, I flake.” A person who has the integrity to say, “No, I’m going to disappoint you. I’d rather do it now,” is doing you a favor.
They’re doing you a huge favor when rather than saying yes and then not showing up for you. It is so much better. I’m going to get back to the list a little bit.
Is there anything else from the pre? The big three are medical power, disability insurance, and having a network. This is something I’ve talked about a lot. There are lots of episodes. One of my favorite episodes is called Making Remarkable Friends. It’s a call to action that says that we’re going to talk about how being single is a superpower. You have an alliance of superheroes when you have great friends.
To have great friends, you have to be a great friend. What time do you have to put in? Take stock, “What kind of friend am I? How often am I checking in and keeping up with people? Do I know what’s going on in their lives?”
Don’t be that friend who only calls when you need help because that’s not really a friend. There are lots of other episodes on that and resources. It’s a useful call to action.
For the list, first of all, the first email that I wrote to my friends is available on my website if anyone wants to go in download it.
Say the name of the website.
IAmTracyMaxwell.com. You can download that list if you want to see. It’s the email I sent to all my friends saying, “I’ve given it some thought and here’s what would be helpful.” I tried to think about my physical, emotional, mental and maybe financial needs. I made a whole list. Some of the things on there were, “Bring me a pint of Ben & Jerry’s Cherry Garcia and a DVD.” This is back when DVDs were a thing. “Invite me to things,” because a lot of times, I said no because I didn’t feel up to it, but don’t let that stop you from inviting me again because there might be that day that it’s the right thing. My friend invited me to a concert and I said, “My immunity is low now. I’m avoiding crowds. Thank you for thinking of me. Please invite me on a picnic, a walk in the park, or something that’s less crowd-related.”
Being specific about their certain times in the chemo cycle is not a good idea. I’ve spent a lot of time looking at my four walls in my condo, “Maybe offer me your mountain cabin or your beach house for a weekend.” I have a friend who keeps inviting me to stay on their own ranch with horses up in the foothills. It has gorgeous views of the city. She keeps inviting me to go up to her ranch, and it’s lovely. I sit and stare out the window.
I invite a lot. If I get lots of noes, eventually, you stop getting invited, but this is a major caveat to that, which is that you should be willing to get an infinite number of noes until the person says, “Please stop inviting me.” We’ll continue with stuff on this. Is there something that wasn’t on the list that you now, in hindsight, would suggest?
The list has evolved. That was my first list. This time, as soon as I found out in May that there were still tumors in there after the surgery and I’m going to be going through, that’s why the decision to do chemo again surgeries was not an option after I had it. I’ve got a ton of scar tissue because I’ve had six surgeries at this point, I knew, “This is next level. We’re entering a new phase of this right now. I don’t know.”
I had gotten used to this pattern of four years cancer-free, surgery, recovery and then four years cancer-free, and that may not be what it is going forward. I put together a team. I said, “Here are the eight things on this list that I need. I need someone to help me with insurance stuff.” I’m very fortunate that I have a friend who’s an RN. She’s a nurse navigator for another insurance company, not mine, but she knows how to help people with that stuff. She speaks the language of health insurance. I pointed her to that role.
Are there independent people you can hire to do that if you have the resources?
You can. I don’t know why my insurance company waited until now to tell me, but I found out that my insurance company has those same navigators. If you have cancer, you’re automatically eligible to use them. For the first time, I called and got a navigator who was helping me.
I have an answer for why your insurance company because your insurance company doesn’t care. You’re just numbers and probabilities in a column. That’s terrible to say, but you’re part of a mathematical form.
That leads me to another thing, which is cancer sucks and cancer treatment sucks, but nothing has sucked in these many years more than dealing with the financial side of having a debilitating illness. Maybe that’s another pre-thing. Have some savings and something to fall back on. It’s part of the foundation. There are a lot of resources.
Many years ago, when I was first diagnosed, either they didn’t exist or I didn’t know about them, and I didn’t need them as much. I was CEO of a small startup company. I had a good salary. I worked full-time. It wasn’t as big a deal, but now, as a self-employed person, who can’t work at all and is on disability, which is not enough to pay even my regular expenses, much less my medical bills, I have to look. There are tons of grants, services, house cleaning services, and meal delivery services.
If you don’t have the energy, it takes a ton of time to manage it. We know who that person is in our life. They’re like a pit bull or a truffle pig.
They’re not going to let it go.
They’re going to find the little treasures that are out there for you.
My friend, Maureen, has been appointed to my paperwork. She does not let it go. She is great at getting her needs met. She knows what they are. I’m like, “I’m amazed at you. You walk in a restaurant. You know which table you want to sit out. You ask for that table. That would never occur to me.” She’s the perfect person to be the tenacious fighter for those services.
The Local Ovarian Cancer Organization is amazing, and everybody has some local or even national organization for their cancer type or whatever they’re dealing with, which doesn’t have to be cancer, that has resources. I have a financial advocate now with the Local Ovarian Cancer Organization who’s helped me get on Medicaid and helped me find all these grants that I’m eligible for, even in some cases applied for me when I didn’t have the energy to do it. Having all those grants has been helpful. It takes a ton of my time and energy to manage it.
There’s not a one click. The only thing one click is buying something on Amazon, but anything that requires filling out forms, no one making those forms are making them for someone who is going through chemotherapy.
Another role on the list is time.
It’s interesting you said them as roles versus needs.
I did this time because, in the past, I’ve done individual needs. This time, I was like, “I need a team to coordinate.”
When someone says to me, “I need this,” I’m like, “I don’t know how to give you that,” but if you say, “I need you in this role,” okay.
It would be very clear about what you need. In my book, I tell the story of this woman who was the emotional support for her friend. She said, “There were other people who dealt with her physical needs and I was very clear. I’m here for emotional support. I’m going to ask you about your soul. You can call me any time of the day or night, but I’m not going to be the one who brings you meals, takes you to doctor appointments, or any of that. I’m here for anything you need any time emotionally.” I appreciate about setting boundaries about what you’re able to give, too, so that saying no is a favor and also saying, “Here’s what I can do. Here’s the bandwidth within which I can operate and what I can provide to you.”
I know who the person would be, like, “Who’s the person that I can get angry around, be real with, hold my hand, let me cry, and let me be a victim when I need to be a victim, not judge me for that, and love me for acknowledging my weakness?” You can think about the people who would fit certain roles. She knows exactly what she’s going to be good at for you.
I have another friend. She is my medical power of attorney and medical advocate. This was great advice for my gynecologist to diagnose me. She said, “Who’s helping you make medical decisions?” I start listing like, “I’ve got a great family and friends.” She’s like, “You can’t make these decisions by committee. You need a person.” It was great. She said, “This is the advice I give to single mothers who come into my practice. You need a person who will help you with any medical decisions needed to be made because they’re pretty big decisions.” This friend is an RN. She thinks similarly to me. We have the same spiritual beliefs. She’s the right person.
She’s a good proxy for who you are when you’re at your best.
When she can, she goes with me to appointments. She is training nurses within the health system where I’m getting treated. It’s very helpful to have her around there.
Bless her.
She’s great.
That is a useful evolution in asking for help. I talk a lot about asking for what you want. This is a particular version of asking for what you want. It’s not just sending out this email and putting people in the right roles. What else is there?
Another thing I recommend to people is that you use some site. There are tons of them now. I probably can’t even name that many care pages like CaringBridge. I use my Lifeline, which is for cancer patients. The quality of that one, unfortunately, has dipped a little bit because my friend who here in Denver started that organization and ran it herself for many years merged with another organization that has a ton of other services. They’re not maintaining that as well.
These are web pages you can go to and get updates.
You post updates because it gets exhausting when everybody called, “What does your scan show?”
It’s the same conversation over and over again.
I post an update ostensibly. All my friends should get an email. That’s part of what’s breaking down with my service lately. In that update at the end of everyone, I say, “Here are things that would be helpful.” I posted. Some of the things I said were DoorDash or GrubHub gift certificates. I buy all my groceries to Amazon Fresh and have them delivered to my door. Amazon gift certificates, Lyft and Uber. I did not feel like driving myself down here, parking and walking.
Lyft and Uber gift certificates are helpful. I ask for rides to the airport and people to stay with me during chemo for people to bring me meals on five days after chemo that I’m going to feel my worst. I did a crowdfunding campaign when I decided I wanted to pursue holistic, alternative, integrative, and complementary cancer treatment at a clinic in California.
They’ll pay for it.
My community raised $25,000 in a week. It was unbelievable. You have to know what you need and be able to ask for it.
That’s hard for people.
It’s hard for me.
Especially if you’re solo. The second pillar of being solo is that you’re highly self-reliant and autonomous. It’s part of the reason that you’re not married because you don’t have to get married to survive. It’s very hard to ask for help.
This is many years of practice that I can now include. I also set up a wish list on Amazon of specific things that I need that sometimes include books. I’m doing a special diet. I’ve read all these books about my diet. I’m having dental problems now. I asked for a water pick, a new toothbrush, and things that would help me deal with the stuff that’s happening to my body as a result of chemotherapy and cancer.
It took you many years to put aside your pride. Pride is 1 of the 7 deadly sins to set it aside enough to be able to for what you need.
I did it many years ago, but I’m getting better at it.
What can you say to someone to skip the many years?
Be smarter than I was. My personality type is also part of it. I keep talking about the Enneagram, but that is part of what makes it hard for me to see what I need because I’m focused on other people’s needs and serving them.
You are telling someone, “You have cancer,” and then you’re trying to console them because they’re upset.
My financial advisor said to me at one point, “You’re donating all this money to all these causes, but yet you can’t pay your bills.” That’s like someone laying on the side of the road after a car accident bleeding and offering to give blood. That’s my personality type. Hopefully, you don’t have mine. If you do you, it can be overcome. You have to take stock of what you need. You are right. There is some pride and some sense of weakness that comes with asking for that stuff.
I’m going to suggest flipping it. The idea is to say if I got this email from someone I loved when I go, “I can’t believe she’s asking for Uber rides,” you’d be like, “Of course.” Put yourself in the frame of mind that the person who’s receiving this. They’ll love you.
That’s the exact advice my mom gave me, to get me to flip the script. She is very wise. She said, “What if you’re friends asked you for help, how would you feel?” I’m like, “I want to give it.” My sister helped me get over the money part by saying, “People desperately want to help you. Money is the easiest thing that they can do.”
There’s something called The Deadweight Loss Of Christmas. Economists have written about this. It’s this, “When you give someone a gift, that’s very nice, but the best thing you can give them is money because then it allows them to get the perfect gift for themselves.”
We always think, “It is so impersonal.” It is practical.
Economists are advocating for it.
Money can always help with any situation.
I say this, “Money solves your money problem.” You listed a whole long list of money problems. What ends up happening is you get diagnosed and then you’re like, “There’s a long list of things to do.” It evolves depending on how things go. Your needs may change. It may go away because you have recovery or make it worse. This goes all the way. I’ve been a little bit flippant talking about this because it’s personal, but all the way to issues of hospice and planning your estate because you are terminal, the decisions about euthanasia. I will not go through what my father went through, 6’4 and 124 pounds when he died. I will not let that happen to myself. I don’t know how I will not let that. My thing is, Janet, my good friend and I are going to fly to Switzerland and be euthanized.
You don’t have to fly to Switzerland anymore. We live in Colorado. It is available here.
I want to have a view of the house and come back in an urn. That’s what she and I have talked about. You can imagine these forks in the road where your needs may change rather dramatically.
I’m glad you brought that up because three of us, my girlfriends and I are all single in our 50s. I said, “When I’ve got this latest diagnosis, it felt different. I don’t know if it is. I might get 4 or 8 more years. Who knows? I don’t know the future, but it felt different.”
When you say you felt different, it felt worse.
It is. I said to a friend of mine, “I may not be around that much longer.” That’s how it felt. I’m not there now.
That hit me a little hard.
I don’t have a will. I’ve had cancer for many years and I don’t have a will. It’s ridiculous.
It’s like the cobbler’s children who have holes in their shoes.
This is relevant in single people. We think, “I don’t have dependents.” We do have to think about this stuff. The three of us found a state lawyer and had a Zoom meeting with him. We’re all working with him now to get those things. Because I’m going through it, my friends are going, “You’re right. I need one too.”
Now, my sister gets everything and I love my sister. She doesn’t need everything. She lives simply. She’s not a money person. I love my sister. She’s deserving of whatever might be left over, but it’d be nice to treat my friends to some things.
Also, causes. I’m being helped now by all these organizations. I’m making notes. I got a grant from this organization. I got help from this research group that is giving me advice about my rare cancer, looking up clinical trials, and telling me what research has been done on it. Those are the kinds of causes that I want to support. I’ve got family and sisters.
The people you would call at 3:00 in the morning. I want to end with two things. I want to get into some more tips here, then a story. There is a lot of advice you could give to anyone who has cancer, “Get more sun. Get fresh air. Take care of yourself. Eat healthier,” etc., but I want to hear some things that are more specific to the solo who might be in this situation.
One of the biggest things I can recommend is that you get involved with the cancer community. I hope you have community outside of cancer. We always say, “Cancer is this club that none of us ever wanted to be a member of,” but here we are. When I was diagnosed, I still fit into that young adult category. I immerse myself in the young adult community. There are tons of resources now that are not your grandfather’s support group.
I imagine Fight Club. He starts going to these support groups. I can imagine it would be a problem in a support group if you sat down and no one was like you.
I did join some support groups like that when I was first diagnosed, and I found them depressing.
How do you get support from someone who’s 50 years older than you who is dealing with a completely different world?
Also, a different stage of cancer than you. Finding the right group is important. There are groups now for young adult survivors. I know not all your readers are young adults, but that community, specifically, there’s a lot of great stuff. There are kayaking and surfing camps in Maui and tons of great things. Here in Colorado, there are a ton of different organizations. They serve people all over the country and world. you don’t have to live here locally to take advantage of them.
One of the nice things about the internet is it used to be you had to go to the local church and sit around on these foldable chairs. Now, you probably have a Zoom meeting. If you’re not feeling well, you can still get support.
Support groups can be great for anybody, whether you’re married or single, but they’re particularly helpful in some support in the cancer community. Go to a conference and attend an online event. There are tons of great education and all the services that offer meals or online exercise classes. There is so much out there. Do some research. There are some great organizations that offer lists of all the different things that are available. I’m still discovering new things after many years. Whether it is finding a therapist, participating in a support group online, in person, or both, attending a camp, or a retreat, being a part of that community because nobody gets it like someone who is dealing with the same thing that you are.
I want to ask about the therapist. I’m glad you brought that up. I have an early episode on How To Find a Therapist.
It’s hard.
My guess was wonderful in part because he laid out that there are all these different types of therapies. You want to find the right type of therapy and the right fit in terms of personality, energy, trust, and so on. When it comes to finding a therapist, there are therapists who specialize in this.
There are tons of cancer coaches. I used to be one. There are tons of therapists. Coaching is very different than therapy. Some coaches are certified, but that doesn’t necessarily mean anything. It’s a little Wild West, but it is the same thing. You want to find someone you’re comfortable with. I lost one of my former clients who found me through my book. She read my book. She reached out to me. She herself is a licensed clinical social worker.
She immediately asked me about certifications. I said, “I don’t have a coaching certification. I have personal experience and a Master’s degree in Communication,” and a background of all these other things that I shared with her. She said, “It doesn’t matter to me.” I’ve been trained to ask that if I have a certification. “I want to mentor. I want someone who’s been through it.” That is how we describe coaching as being a little bit different. It is more a mentorship. Coaches ask a lot of questions and help you discover for yourself what’s going on.
I have only seen a coach once and I’ve seen many therapists. There is a different tone. I have a therapist who we reached a point where he felt very comfortable telling me something rather than asking me something. Coaches can get to the telling part a little bit easier. I like to give advice and take advice. I’m very comfortable with, “You should do this,” because I’m like, “I never thought of it that way.” Depending on your personality and needs, a coach maybe a better fit or a therapist.
I ask around. That’s another great reason to be part of the cancer community. Ask your community who they are like and what have they benefited from. I’ve been looking for a therapist and I’m having a very hard time because I want a specific type of therapy. It’s newer so there are not as many people, and I want it to be covered by my insurance, which a whole other ball game.
I say this as a compliment. You’re already Jedi-level when it comes to this stuff. Finding a therapist who is at your level is hard to do. You’re not going to find someone who got their Master’s in Social Work, who’s 26 years old who hasn’t lived life enough. They may be able to help a lot of people, but they’re not going to be well equipped. You’re going to end up teaching him. I get how this is a complicated situation. I hope you find someone good.
For many years, I’m with the new hospital system. Now I am in the new insurance and there are a lot of services through a lot of hospitals. I recommend that. I can get acupuncture and help with social work and the social worker help with some of the financial aspects. I have a therapist. I can get help with my diet from a dietitian. I do have a therapist and I lucked out. She’s amazing. She’s for the cancer stuff. Sometimes, we talk about other stuff, but it’s focused on helping get me through treatment.
I’ll talk about two other roles that are on my list that are particularly important for single people. One is that I have a friend whose job is to check in with me every week and see what I’m doing. I try to call my single friends frequently. I’m single. I work from home. If something happened to me, people wouldn’t know for a long time. It is having someone check in with you regularly that that’s their job. If they don’t hear from you, they’re going to come check.
This is a crushing thing to say to my mom, who died years ago. She was in poor health. It was sudden but not surprising. She and I communicated often but not regularly. The way that we found out was there was a local restaurant that she was ordering from to feed herself. She stopped ordering, and they called the police. Isn’t that heartbreaking?
Heartbreaking.
She was isolated. She had no one in the neighborhood who was checking on her. I was like, “It was me, but I’m 1,700 miles away.” It still breaks my heart. That’s a good advice.
It’s good to have someone check on you even when you’re well, but when you’re going through something like this, definitely have that. The other one is my favorite. I pointed a friend of mine to be the minister of fun. My oncologist gave me the advice to give cancer the middle finger by having as much fun as possible in my life as normal as I could, which is great advice. Her job is not necessarily to be the one who has to make take me out to do things that are fun, but to make sure that I’m getting that. It is to check in say, “What are you doing that’s fun?”
Everybody should have that person in their life. Who is it? I already know my minister of fun probably would be Julie, who’s been on the episode a lot. She is like my soul sister. I think she’d be a good person. I talk about how superheroes tend to be single. One of the things that it does is that you can be unencumbered and save the world. There’s no one who is going to be like, “When are you coming home? What are you doing? Are you saving the world again? I thought we were going to watch our series?” and the wet blanket thing. The person’s out there fighting crime, and then we singles are better at doing that. When you email me, you have a story about that.
It’s surprising that it took someone else to point this out to me. I was interviewing this woman named Sage Bolte. She’s an amazing social worker who has been involved with the young adult cancer community for a long time. She’s one of the conferences that does the workshop on sex and sex after cancer. That’s another thing that I didn’t mention for single people. Body image and having good sexual relationships and thinking about your fertility are things that affect all people, but it affect single people differently.
Especially if you are Just May, “I might want to find a parter. I want to have kids.”
That was one of the first questions my oncologist asked me because he was a good oncologist. This did not always happen with young adults when they were diagnosed.
We have a different plan.
Treatment is debilitating on fertility, “If you want to have kids, we need to freeze your eggs now.” I was very lucky that I knew I did want that. It wasn’t important to me. I certainly wasn’t going to spend the money. It’s very expensive. Although, there are services that will help cancer patients pay for that. There’s a whole realm of stuff in there. I was talking to Sage and interviewing her for the book. She said, “If you think about all these organizations that have been started to support, it was a lot the young adult community but not entirely people in the cancer community. They were all started by single people.”
We started listing them and we came over twelve right there on the spot. There are more now. That was my first thought, “I’m going to start this organization called Solo Survivors. I’m going to support other single survivors.” It’s all those things you said. We have the time, space, and capacity to go and do something.
I may use that fact somewhere. There is an article or a paper to be written and I need the right data. I believe this in my soul that this idea that singles are selfish and don’t contribute to society because they’re not getting married and having kids is some of the biggest BS propaganda that is being laid on because what happens is what singles do, and it’s mathematics, is because they don’t have to come home. They can stay late in the lab if they want. They can go fight crime and go cure cancer. They can make art. They can do these things at some point in your life because you have responsibilities at home because you’re going to be a good father and you are going to be there for dinner. You are going to be there for the kids’ ball game or recital. You’re not in the lab curing cancer. They’re all started and run by singles.
I had a friend who offered to pay for me to have my astrological charts done. I have never done that before. He’s like, “I had mine done. It was interesting.” I’m like, “That’s cool. I’m interested. Let’s do it.” He paid for it. This person did my charts. One of the things that has stuck with me the most that they told me was, “Because of this particular thing in your charts, it would be hard for you to find a partner.” it was for that exact reason because you are here for the world. Because you’re focused on the world, your partner might not like that because they want you to be focused on them.
“Here’s this wonderful person. Let me keep her close.”
I was talking to my mom about that at one point. It’s foreign from the way she looks at things. She’s like, “I want to focus on my family.” I’m like, “I get that. I see the world differently than that.”
“To me, it’s a different world, but don’t you dare tell me your world is better. Do not tell me that my world is worse or that your world is worse because I’m not I’m not riding the escalator with you.” You have contributed to the world. You wrote this wonderful book Being Single, With Cancer: A Solo Survivor’s Guide To LIFE, LOVE, HEALTH And HAPPINESS. This is a long overdue episode. I appreciate you pushing yourself a little to come to the studio and talk to me.
Thank you. As an extrovert, it’s great for me to be around people. It’s good for my energy. I feel better now than I did when I arrived. I want to thank you for this show because it’s made a huge difference to single people like me.
My pleasure. Cheers.
Cheers.
Important Links
- Tracy Maxwell
- Being Single, With Cancer: A Solo Survivor’s Guide To LIFE, LOVE, HEALTH And HAPPINESS
- Making Remarkable Friends – Past Episode
- CaringBridge
- How To Find a Therapist – Past Episode
- The Deadweight Loss Of Christmas
About Tracy Maxwell
Tracy Maxwell is a cancer survivor and author of “Being Single, with Cancer: A Solo Survivor’s Guide to Life, Love, Health, and Happiness”.