Stage 4 cancer is a devastating diagnosis, but for Tim McDonald, it was the beginning of a powerful mission. In this episode, Tim shares his incredible journey of transforming from a patient told he had no options into a fierce healthcare advocate. Learn how he became the “general manager” of his own care, why mental health is crucial for survivors, and the simple but profound way he handles loss in the advocacy world. This conversation is an essential guide to turning survivorship into impact, just like in his book, From Patient to Advocate: Turning Survivorship into Impact.
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Tim McDonald, Author Of The New Book – From Patient To Advocate
Tim McDonald is an author, healthcare advocate, speaker, and community builder who turned his stage four colorectal cancer diagnosis into a mission for change. He translates patient experience into meaningful action for researchers, policymakers, and healthcare organizations through leadership roles with Fight Colorectal Cancer, Man Up to Cancer, HOPA, and the PAN Foundation.
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Tim, welcome. It is good to see you.
It is good to see you. Thank you.
I am curious about your story, your journey, and your book about advocacy. Where would you like to start?
Beginning Of Tim’s Diagnosis And How He Handled That
Usually, the best point is right at the beginning of my diagnosis, and how I handled that. What I have learned through that process and journey, because it relates backwards to a lot of other stuff that happened in my life, if that is okay with you. It was November 2020 when we were all facing the pandemic. It was a global thing. We all were in the same boat, one of the first times, I think in history that has happened, at least in modern history.
Everybody is still unique, but we all could at least relate to what was happening. My wife and I were making the best of it, having some fun virtual Zoom parties with our friends and hiring our musician who played at the local sushi place across the street to come in and do all that, doing a little bit of weekend trips at Airbnbs where we did not have to meet the host. It was all like giving you 24 hours between guests so they could sanitize it and everything.
In November, right around Thanksgiving, actually, I started having this pain in my right side and told my wife about it. She encouraged me to go to the urgent care, which is right in our neighborhood. Just being the man that I was, I said, “No, I will just wait and see how I feel.” On Monday, and if I am still feeling bad, go. Each day, it got worse. She kept asking me, “Go.” I said, “No.” Sunday morning, she woke up, and I said, “I made an appointment. I am going to be going over there.”
I went over, and they did not know what it was, but they ordered a CT scan for me to get on Monday morning. I went on Monday morning and was told that when I got the CT scan, we should have the results in a couple of hours, but do not call us. Whoever ordered the CT scan for you will have your results and get in touch with you, probably this afternoon. We were just waiting, having some fun at home, and I got a call from the urgent care asking if I could come in.
I just remember joking with my wife as I was walking out the door because I could literally walk to the urgent care. I just said, “I guess it is not going to be as simple as them calling in a prescription for me. Otherwise, they probably just would have told me over the phone.” I got there, and I figured something was up because we all know when we go to doctors, you have to check in, fill out your forms, and wait for them to call you back. They just said, “Mr. McDonald.” I said, “Yes.” They are like, “Come on back.” Put me right in a room.
About five seconds later, the doctor came in with one piece of paper in his hand and said, “You have cancer.” I just remember that. I am telling this is because he thought something was wrong with me by the way I reacted to it. I was just so calm, just like we are talking now, and everything he was telling me was about all this stuff that happened, where it was, it was in my liver, in my colon, almost blocking my colon, lots of spots in my liver. All I said to him was, “What should I do next?”
He was just like, “Are you okay?” I am like, “Yeah, I am fine.” He kept asking questions like, “Do we need to call your wife to come over and get you and walk you home, or anything like that?” I am like, “No.” Finally, I just told him, “Why are you asking me all these questions?” I am like, “It’s because you are not acting how I would expect most people to act if I told them they had cancer.” I said, “Let me ask you a question.” He goes, “Yeah.”
I said, “if I acted any differently, would it change what you just told me?” He said, “No.” I said, “Why should I act any differently than I did before I walked in here?” He goes, “You got a good point. You are just not like most other people that I deal with.” That was the start of it. The one thing that I was worried about was telling my wife because I knew she was going to be devastated. Got home, told her, she was devastated, but we had work to do, which was to get to the GI doctor to get a colonoscopy scheduled.
My urgent care doctor actually called in her personal favor with a surgeon that he worked with in the ER, and got me in that same day to go see the GI surgeon. We needed to go. We drove down. Went in, and you needed three days back then before you got a procedure done because you needed to get a negative COVID test, and it was 48 hours at that time. Got that, three days later, I got the colonoscopy. My sister had flown out here to be with my wife and me for a few days during that time. All this was very new to me.
I did not know what metastasis was. I had heard of the four stages of cancer, but I never knew what they were. My sister had a little bit of knowledge of it. She was filling me in like, “Anybody who is stage four basically has metastasis, meaning it is spread to a different part of your body. “ We were just trying to figure out how I got into an oncologist, or back in those days, I was wondering why I just couldn’t talk to a liver surgeon to have them cut the cancer out of my liver. I just thought in simple terms back then. Now I know a lot more, so I do not do that.
Needless to say, I progressed with my cancer treatment very well. I knew that was going to happen. A lot of people say they have what in the cancer world say they have scanziety, meaning you get anxiety around your scans coming up, which are typically at three months. They had put a stent in my colon when I had the colonoscopy. After my first infusion, I passed the stent naturally while I was going to the bathroom. It was not pleasant. It did not happen right away.
It took me 45 minutes in the bathroom. I did, and then I called my oncologist at the time just to be like, “Is this okay?” I thought something could be wrong. He goes, “No, it is very encouraging actually. That probably means your tumor shrank enough.” I am like, “Great.” Ever since that point in time, I just figured that I was going to have a good scan on that first scan. That first scan was great. Some of my tumors on my liver reduced by centimeters, not millimeters. I was just really thrilled with the progress I was seeing.
I just kept having good results, but I got involved in a couple of groups, basic support groups, early on in my treatment. The first one was a men’s cancer group, and they were more about the emotional support, which I did not feel like I needed a whole lot of that, but it was just nice to connect with other men who had cancer and understand some of the issues and things that I was not hearing anywhere else.
Just the details, life details. You do not hear from people unless they are living with it.
That and plus I think hearing it only from guys as opposed to hearing it from women, it was different because I think we process things differently. Men, as a general rule, I do not think are as open as women are with their emotions because we were always taught that growing up that we need to be strong and strong in the sense that you do not let people see you cry, hold in your emotions.
Men process things differently. As a general rule, men aren’t as open with emotions—men were taught to be 'strong,' to not cry or show feelings. Meanwhile, many women are more comfortable expressing those emotions. Share on XIt is all the stuff that most women are okay expressing. In this men’s group, I started seeing guys do all the things that were not considered strong men in society, in our group. If you saw them on Facebook or anywhere else, in public, they were still the strong guys. It just opened my eyes up to just how much this is needed for men facing cancer. I started getting really interested because I was not taking the advice that most of my providers were telling me, which was that I was going to be on chemo for life, not a surgical candidate.
I just did not buy that. My story that I was telling myself and that I believed in strongly was that I was going to make it through this one way or another. I believe in the modern medicine methods that we currently have. I did not believe that just because one doctor was telling me this, that was going to be my story. I had asked the guy who was running the men’s cancer group if there was another group for colorectal cancer patients that was more about treatments than emotional support.
He told me about another group. I got in there. It was a little overwhelming, to be honest. I am very active with them now, but back in those days, I would just remember they were on Facebook at the time, and it was like you became friends with all these people you did not know. They invited you to all these different, they called them neighborhoods, for Facebook groups. It was very strange to me.
I got in there, and I started just figuring out I did not need all of that. I just needed what I needed. Those were people who had metastasis to their liver. I got in there, I started looking around, and this was in February. It was only four months after I was diagnosed. They had this thing that was like a match, “Are we a match?” The Valentine’s theme. It talked about the condition of the cancer in your liver compared to the different treatment options.
Pursuing A Living Donor Liver Transplant Path
I kept going through them and started thinking to myself, “What all these oncologists are telling me is right. I am not a candidate for this. I am not a candidate for this.” I got to a living donor liver transplant, and I am like, “Wait a minute, it looks like I might qualify for this.” I started pursuing that path, and that is when I learned the power of advocating for yourself. I remember I reached out to that surgeon. I got a Zoom consultation with him.
Before I saw him, I made an appointment with my actual oncologist. I go to a major cancer center here in Tampa, an NCI-accredited comprehensive cancer center. I usually saw one of his PAs, typically, but I had asked the PA on my last appointment. I said, “I have some things I want to discuss with my oncologist. Can I set my next appointment up with him?” They are like, “Absolutely. Anytime you want, just let us know. We will do it.”
I went in, I told him, and I will never forget when I told him I was going to be talking to a transplant surgeon for my liver. His first words were, “That is outside the box.” The only people I know that do that are the Cleveland Clinic up in Cleveland, that might do that, not that do do that. I just remember thinking to myself, “Man, this is not the way I would want to be talking.” If I were in his shoes, I would not want to be talking to a patient this way who says, “I am bringing you something that I think is providing hope, and you are telling me it is outside the box.”
My initial thought in my head was that he does not know me too well because I am outside the box in the way I live. That just basically opened the door for me. I just wanted him to know what I was doing because I felt really strongly about having a team. That was the first point in my treatment that I realized I am going to use a sports analogy here of American football, but most people think if you are the patient, you need to be the quarterback of your team. I say I used to believe that.
After this whole experience, we are not the quarterback. We are not even the head coach. We are the general manager. We are deciding which people we want to put on the field and who is going to be calling the plays with us, and help us give us the best odds of winning. That is who I became in that moment, the general manager of my own team, saying, “We are going to make this happen.” I want these people to come together. I want them to talk and do all this other stuff. It was really that whole process. I did not realize it in the moment, but I can look back and say that was the moment it happened now.
I really took control of my own path instead of waiting for experts to tell me what they could do for me. I was finding the right experts for my own personal situation and putting them together on my own team to give me the best shot at winning. Needless to say, I ended up getting a living donor liver transplant almost three years ago. I have an amazing story about my donor, too, that we could probably spend a whole hour on that in itself. Really, the thing that I started understanding after I got my transplant was that I feel like I handled my cancer diagnosis treatment as healthy as I could mentally.
I took control of my own path instead of waiting for experts to tell me what they could do for me. I started finding the right experts for my specific situation and building my own team to give myself the best chance of success. Share on XAdvocating For Mental Health Treatment In Survivorship
Once I got to a place where I had my transplant and I had recovered physically from that, I think anybody who has a second chance at life has some mental issues that they need to deal with. Any cancer survivor also has survivorship mental issues that they need to deal with. I am a big proponent of this in my groups now, especially for transplant recipients who are colorectal cancer patients. Mental health should be part of the whole treatment process. Just like getting your new liver, you should be treated for the mental health aspect of it, too. That was never offered to me. I actually had to pursue that once I got back home.
Again, you have to advocate for yourself.
I advocated for myself again, and I did talk to a therapist for nine months. I talked with a lot of other guys in my men’s cancer group who were survivors about understanding this. I am not saying I am perfect at this. I feel like for all of us, it is a process. It is not a destination. I keep getting better and better at dealing with it because as I get further into my survivorship and the more advocacy work I do, the more loss I experience.
Transforming The Weight Of Loss Into A Guiding Light
Colorectal cancer is the number two killer of all cancers, and it is the number one killer of people under the age of 50. In all these advocacy groups for colorectal cancer, I get to meet some of the most amazing people that I have ever come in contact with, but I also lose a lot of those. One thing that I have learned and processed through all this is that I used to carry that weight on my back, on my shoulder.
Every time I lost somebody, I felt like I needed to carry them with me. Just in the last year, I have started to realize I can still carry them with me, just in a very different way. I do not need to have the weight of them over my shoulders. I can actually take them and have them brighten the flame that lights my path forward. That transformation, I know it sounds very simple, and it is very simple. It is not easy to do, but it is very simple. It has helped me understand this is how I honor them.
This is how I never forget about them. By doing this advocacy work, getting out there and telling their story, sharing their stories with those who will listen, and knowing that together we are making an impact. I am not burdened by the weight of them on my shoulders anymore. I dare to say it has just been transformational in my survivorship, realizing how I can do that. It has really been a major change. I talk with a lot of other advocates or people who are getting into advocacy, because one of the things that I never try to do is sugarcoat anything.
I am a firm believer because my professional work is building online communities. You bring people together over a shared purpose to create a shared outcome. It’s very similar to what we do in these advocacy groups. The one thing that I need to be careful about in these advocacy groups is that, unlike these communities that I run, I firmly believe that you need to make everything look like fun. If you tell people you want to, “Come work with me,” nobody wants to come work with you unless they are getting compensated.
If you make it look like fun and you are having a great time, people want to be part of that. They want to experience that with you. I do feel that way about advocacy in a sense, but I do not want to just highlight that aspect of it. There is another important side of this, which is how emotional this work is, how mentally taxing this work is, and the loss that you experience during this. I do talk about this a lot. I share this with a lot of other people who are going through this.
I was in DC back in March for Colorectal Cancer Awareness Month, and we were calling on Congress, and I was talking with this twenty-something-year-old who was diagnosed when she was in her teens, and there is no evidence of disease now. You can imagine her friend network from colorectal cancer is mostly young people. She was fortunate to survive where a lot of those are not. She was just carrying their weight on her shoulders as I had never seen before, like I once was. I just told her what I had just shared with you.
She literally, when we were done talking, just gave me a huge hug and thanked me for that because I know it is not going to be just that she got home and changed the way she thought about things. I know at least the seed was planted for her to do her own work to try and help get there. That fills my heart and keeps me doing this work when I can share these lessons that I have learned with other people who are going through this, so that they do not have to take as long to figure it out as it took me to do it.
As you are talking, I think about how bizarre it is in our culture that we make this loss thing so negative. David Whyte, the poet, talks about how half of all human experience is loss. Everything that begins in time ends in time. Every relationship we have ends. The very best marriages on this planet end in death. What we do with our valuing of it, labeling it, and interpreting it is everything about what we experience as a result of it.
I have come to learn that death is about the people who are still here living, not about the person who died. I am not trying to convince anybody that I am right or that I am wrong or anything, but that is how I look at it because I do not know what happens to me when I go. I do not think any of us know for sure until we are there.
Death is about the people who are still living, not about the person who died. Share on XYou have had the lived experience on this side of that transition, and you know what that can be like. You have been here, and you have lost people, and you know what you can do with your mind energy around that
My wife thinks that I have gotten numb to death. It is not that at all. I still have emotions. I still cry. I still feel inside when I hear somebody is gone. I also understand that the pain of losing them is because I got to know them. That is a personal thing that I am going to miss having them in my life. That does not mean that I cannot take the memories. I cannot take the lessons. I cannot take that friendship with me. I just cannot physically be in the same space as them anymore.
What I talk to people about with this, and I have a process for grief and loss that I make available to people for free on the AllTheSame.info website on the educational materials page, is simply that if I can face that pain and fear and sadness and realize it is not going to kill me and keep my breath moving and let it move through me, then I can get access to all those wonderful life lessons. If I refuse to accept the pain or think it is too much and shut it down, I am also blocking myself from having access to those life lessons and joyful memories.
That is so true. I really feel like so much of that particular aspect about processing through something instead of just burying it is appropriate to just every aspect of our lives.
The thing about it in this particular case, when I am ending a relationship, or somebody dies, is that unless I block myself from access to those memories, that process, that relationship, even if it was difficult, has enriched my life and taught me lessons if I am willing to learn them. However, if I am busy trying to shut the pain off and I do not want to face it, I block myself from having access to those life lessons, and I block myself from having access to the joyful memories as well.
So much of what we experience in life is two sides of the same coin. If we do not know one, we do not know the other.
We try to block out one, we block out the other.
I remember years ago, it was well before I was diagnosed. I just did this drawing that was talking about a roller coaster. One was a straight path, no hills, no inclines, no nothing. That is how most people say they want to live life. I do not want the emotional ups and downs. I just want to live and have everything be perfect. To me, that is not living. The living is when you have all these twists and turns and ups and downs, and all of those things help you appreciate the other side of that coin so much more.
I am not suggesting that we all go out and jump out of planes so we can feel comfortable living, having our feet on the ground. I am not saying that, but I do think that when we start processing our grief, when we start processing our sadness, it helps us be more joyful. It helps us be happier. I want that in my life. That is what I have learned through this whole thing. Just how much I can actually appreciate all this stuff. I know I talked about fear before I was diagnosed, too, and talking about how fear is rational and irrational, and our irrational fear has such a job at masking itself as rational fear in our minds.
To your point about grieving and death, I came to understand that we cannot face our fears by burying our heads in the sand. We cannot face them by just looking at them the whole time. We cannot face it by trying to avoid it. What we need to do is move through it. When we move through it, we look back. What was once this big, scary monster in front of us is now this little shadow that we do not even recognize anymore. To me, I think that is why, when I was told I had cancer.
To me, that’s like, “Why, when I was told I had cancer? Why, when I was told I did not have any options, did I not feel like I was doomed?” There was nothing to be scared of at that point because those things were not present right then. I could work through those words that I was just told. I could see if there was something on the other side of that. For me, there was a lot on that other side. It is so empowering to be able to recognize that, but not just recognize it, but put it into your daily practice and understand just how much we have to live that I probably was not living before.
If cancer taught me anything, I think it is that. I have so much life to live, but I need to do it now while I am here, because I never know when I am going to go. Just really appreciating life, not being held back by fears and constraints and societal conditioning. It is really understanding. It is not easy either. To go deep inside yourself, to start asking yourself some really heavy questions about who you are and what your wants are, it is a really difficult thing, but it is one of the most rewarding things I think I have ever done.
If cancer taught me anything, it’s that I have so much life to live—but I need to live it now, while I’m here, because I never know when my time will come. Share on XWriting The Book “From Patient To Advocate”
Give us the title of your book that has just been published.
It is From Patient to Advocate, Turning Survivorship into Impact.
Was it just this past month that you released it?
It came out on March 1st, not that long ago. It was really something that I had come up with the idea after several people asked me about how I got involved in advocacy, because I was starting to get invited to do a lot more advocacy conferences. I was asked to be on some research panels for research for some potential cures for cancer or new treatments for cancers, or detection methods for cancers.
I was getting to be on patient advisory boards for some organizations that are substantial in both the professional and the patient space. Everybody that I see at some of these conferences was like, “How do you do this? How do you get involved? I want to do this.” Again, to my point of being the one who makes it look fun, and they all want to be part of it. I am a firm believer that if somebody asks you the same thing three times, you should write it down.
Probably more people are going to ask you. Instead of having to spend fifteen minutes telling each person the same thing that you just told them, you can just share a link with them, and they can read about it. I knew talking about advocacy was going to be much more than a blog post. It had to be a book. That is what prompted me to write the book, really having three, actually, it was probably double that, probably about six people ask me the same question about how they could get more involved in doing advocacy work.
All of the stuff you were just talking about before, the idea of doing the deep dive inwardly and using this life event, even though we call it cancer, it is just another life event, using it as a learning or a strengthening process. I sent you a link earlier from the book by Sheriann Tom titled The Call of Cancer: A Loving Pathway to Wholeness, Healing, and Transformation. It is just one of the many good books out there from people who are not sitting off in some study hall theorizing about this. They are living the life experience, learning the lessons, and then graciously passing them on to others.
I remember back when social media first came about, I was in a totally different industry. I was in real estate at the time, but it was right during the market crash of 2008 and 2009. I was part of the social media club, and their tagline was, “If you get it, share it.” That tagline just embodied everything that I have always been about. I have just adopted that as my philosophy in life now.
I am a firm believer that if I get something, it is my responsibility to share that with other people who are interested in learning it, so they do not have to go through all the pitfalls, all the roadblocks that I went through to get to where I am. Many people had done that for me, and I just felt like I wanted to start doing that for other people.
It is quite a gift. Looking at the time, let me ask you to get centered and clear your mind and think about what we have talked about so far. Is there a part of it you want to go back and highlight or is there something we have not even mentioned yet that you would like to bring out in this interview?
Understanding That Life Experiences Help Us Become Better Human Beings
I think the thing that I really want to go back to is something that you just brought up about being diagnosed is just another thing that happens to you in life. I love that you brought that up because I did talk with another guy who joined our men’s cancer group, and I lead our chapter here in Florida for our men’s cancer group.
He called me on the phone after he joined, and he was telling me he was a sheriff up in central Florida. His kids were just about ready to get out of the house. He and he had plans to go out and start traveling, and retire from his job. He just felt like he worked out all the time. He just felt like everything in his life was going to change.
I had just asked him after listening to him for a few minutes, and I said, “Let me ask you a question.” I said, “Are you the same person you were when you were living with your parents compared to when you moved out? Are you the same person as you were before you got married to your wife as you are now? Are you the same person you were before you had your kids as you are now?” He said, “No.”
I said, “All this is just another experience that you are going through. You are going to be a different person because of it, but who you are at the core is still there. You are just learning from this lesson, just like you have learned from all those other ones, to become a better human being.” To me, that is one of the most important lessons that I have learned through all this is that none of this defines who we are. They just help form how we can become better human beings.
None of our problems define who we are—they simply shape how we can become better human beings. Share on XThank you very much for your time, for writing the book, and for being an advocate. Please let me know how much I appreciate the work you have done and your continued success. It is entirely amazing and valuable.
Thank you so much. I really appreciate hearing that. It is truly a gift when other people acknowledge the impact that we are having.
They do. It has been fabulous, and I appreciate it. Thank you so much for giving us your time.
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Tim McDonald is an author, healthcare advocate, speaker, and community builder who turned his stage four colorectal cancer diagnosis into a mission for change. He translates patient experience into meaningful action for researchers, policymakers, and healthcare organizations through leadership roles with Fight Colorectal Cancer, Man Up to Cancer, HOPA, and the PAN Foundation. Now host of Advocacy at Work, Tim uses storytelling and advocacy to raise awareness and drive impact. He is the author of the brand new book, From Patient to Advocate.
Important Links
- Tim McDonald on LinkedIn
- Tim McDonald on Facebook
- The Same Podcast
- From Patient to Advocate, Turning Survivorship into Impact
- The Call of Cancer: A Loving Pathway to Wholeness, Healing, and Transformation
- Advocacy at Work
About Tim McDonald
Tim McDonald is an author, healthcare advocate, speaker, and community builder who turned his stage IV colorectal cancer diagnosis into a mission for change.
He translates patient experience into meaningful action for researchers, policymakers, and healthcare organizations through leadership roles with Fight Colorectal Cancer, Man Up To Cancer, HOPA, and the PAN Foundation.
Now host of Advocacy at Work, Tim uses storytelling and advocacy to raise awareness and drive impact. He is the author of the brand-new book, From Patient to Advocate.
