What happens when someone close to you has been diagnosed with cancer?
How do you find the right words to say?
What is the best way to support them?
And how do you cope with your own emotions and feelings at the same time?
In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer. The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.
Firstly, acknowledge that this can be a hard time for you too
Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for. You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb. Breast cancer survivor, Nicole McClean describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease: “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”
But don’t make it about you
In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties. Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”
Just ask what’s needed
“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc), is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.” Breast surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”
Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”
Listen, hear and do
“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.” The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“
John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”
Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises, “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”
And it’s ok to not know what to say sometimes.
“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”
HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.” Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”
Do what needs to be done
“Don’t ask her what she needs, just do something that she needs,” recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”
“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”
Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help. You may have to drop a high priority task but when the call for help comes. Go!”
Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”
This theme of cooked meals comes up again and again.
“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy. Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”
After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense) recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget.
Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbour who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”
Give thoughtful gifts
From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD, author of Braving Chemo, writes: “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”
Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”
Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”
“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.
Although be mindful that not everyone appreciates the same things.
“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.” Breast cancer blogger, Sheri received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.
Help with treatment decisions
If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.
Offer compassion and kindness
Two-times breast cancer survivor and patient advocate Terri Coutee believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”
John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”
Sara Liyanage, author of Ticking Off Breast Cancer  reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”
Treat your friend like you normally would
Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.” Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”
Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,” she points out. Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”
Know when to back off
“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”
Knowing when to be there for your friend, and when to give them space isn’t always easy. but it’s an important balancing act as a good friend. In Tips for Being A Great Cancer Friend, Steve Rubin, points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”
It may take time to find the right balance, so let your friend guide you. Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment. Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”
At the same time, Terri Coutee advises gentle persistence: “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,” she says. Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”
Make your support ongoing
Support is not just one and done. In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”
Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. 
“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.
“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”
your help to what your friend needs and enjoys most is the best way to be a
friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl)
points out “the answers will surely be as varied as we are, both in life
generally, our experience of cancer, and our connection with our friend.”
 Nicole McClean. My Fabulous Boobies.
 Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients
 Life After Why
 Terri Coutee, DiepCJourney
 Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”
 Steve Rubin, The (Other) C Word
 American Cancer Society, “How to Be a Friend to Someone With Cancer”
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
After Diana’s cancer diagnosis, she was told that she had only months to live. But, after meeting fellow head and neck cancer patient Sajjad Iqbal online, Diana’s path changed dramatically and she is now cancer-free. Hear their inspiring story about the power of connecting with other patients.
My name is Sajjad Iqbal. I am a physician and also a cancer patient. I have the honor of serving on the board of Patient Empowerment Network.
I’m Diana Craig from Auckland, New Zealand.
I was diagnosed with a gland cancer, which is a salivary gland, on the left side of the face. The actual histology was a salivary duct carcinoma. It was diagnosed in February of 2002.
In January of 2018. I was diagnosed with squamous cell carcinoma HPV 16 on my tonsil and soft palate.
I do a lot of counseling for the cancer patients and mentoring and advocating and all that. And as a part of that, I have joined a head and neck cancer support group, which is based in New Zealand. It’s on Facebook. And there are some great people there who advise together cancer patients. Diana posted a cry for help back in May of this year, May of 2019, where she was just given the news that her cancer had recurred in her lungs and near her trachea. And her oncologist gave her a very grim prognosis and he thought that the medication had a very small chance of success.
And he told Diana she had a few months to two years to live. Diana was devastated. She posted on that Facebook group, and I reached out to her to introduce myself, to tell her how I have managed my own cancer, and I told her that I could try to help her if she would be willing to share the information with me.
Initially, I hadn’t heard of him before.
And I felt I needed to do some research, and I was told by everybody what a good guy he is, and to absolutely go down that road. So, I happily gave my information and certainly after the first conversation or interaction with him, I knew I was in good hands. Very much so. It was, to me, I used to call him my angel, my guardian angel, because I really felt safe and informed and encouraged. And his mantrais hope and determination and that is such a valid mantra when you go through cancer.
And it’s something that I said to myself oftentimes because it was so poignant, and it’s everything that you have to be and do to empower yourself and to be proactive, to find the best possible outcome for yourself.
You know, as you know, I have written a book about my amazing cancer journey. The book is called Swimming Upstream. And a lot of other people have found it very inspirational. So, my story was not a whole lot different from Diana in this respect: that I was given a very grim prognosis back in 2002.
I was told that I had less than 30% chance of surviving for two years and I was also told that there was no five-year survivors with this cancer. And I made it my goal to beat the odds. And I used to say that in that case, I’ll be among the 30% and if no one has survived five years, well, I’ll be the first one. So, the hope and determination that Diana just mentioned, that’s my motto. Hope and determination. And I tried to instill that in Diana.
It certainly empowered me or put me in the right direction as to, I mean, I like to be moving, I like to be able to fight the fight if I know where to fight to. And also, know what questions to ask. I mean, when you’re in that situation, you are told how it is. And you don’t know what you don’t know. And unless you’ve been informed by somebody else or do the research yourself, and even then, that’s pretty dubious, because you stumble across information that you don’t want to know, and a lot of it’s scare tactics. But with his knowledge, with his background, with his first-hand experience of going through what we have gone through, gave me the confidence to do everything that he said.
And I always recommend to my friends, other patients, that going to your oncologist about the cancer treatment is so much different than going to a doctor for your blood pressure or your bronchitis or so on.
This is an area where we need to be fully prepared. We need to go in and have a dialogue with our doctors who are treating our cancer and this is a matter of life and death. Literally, life and death. So, there is no room for just sitting there passively and just listening to everything and agreeing to everything. We must ask a lot of questions to our doctor. They should be, not only willing to answer our questions, but they should be welcoming our questions. So, if a doctor does not welcome your questions, does not give you plenty of time, does not explain everything that he or she wants to do, then that’s not the right doctor for you. And you’ve got to move on, and quickly.
Where would I be without meeting Sajjad? I would have no hair at this point. I would be in the middle of chemo and probably K-truda. I don’t believe that I would have such a radical improvement so quickly. Because mine had gone after three infusions, which is nine weeks. So, I floundered the first time because I felt like I needed the help and I couldn’t get any. And the last time, I felt so much more in control, and anybody would think I’m a control freak. And let me tell you, I’m not. At all.
And also, being on my own, as well, I didn’t have a partner there to talk to. It was heaven-sent. And I said to him, “If I come out okay, I’m going to come and see you.” And here I am. Coming to see you. Because it meant so much to me. It really meant so much to me. It really did.
Yes, it did.
The medical science is moving at an astonishing pace to find new medicine, new modalities, to treat cancer. We cannot be – the patient must not get bogged down in the statistics of, oh you have this percent chance of survival, or this percent chance of death. Because those numbers don’t mean anything anymore. They’re old numbers. And to fight the cancer, we need our immune system to be involved in the fight.
If we get depressed, if we lose all the hope, the immune system shuts itself down, and that helps the cancer. So, number one thing is to always have hope. Always remain optimistic. And number two is determination. You determine that you are going to fight this and you are going to survive. And then, having those two tools at your disposal, become the empowered patient. Learn as much as you can about your cancer. Talk to other people, go to the support groups. And, again, let me plug Patient Empowerment Network. Go to our website, learn about the cancer. Then go to your doctor and question them and find out how you can improve your treatment. And that’s the way you fight cancer.
Support for People with Oral and Head and Neck Cancer (SPOHNC) has over 125 Chapters throughout the United States and continues to grow. Connecting with a local chapter is an in-valuable first step in the healing process.
SPOHNC, a not-for-profit 501 (c) (3) organization, has become a vital component of the healing process for head and neck cancer patients. It has had an enormous positive impact on meeting the psychosocial needs of patients as well as preserving, restoring, and promoting physical and emotional health. A support organization, such as SPOHNC, can also be the foundation for patient and family education and awareness.
Raising awareness of oral and head and neck cancer is an important part of SPOHNC’s mission. SPOHNC’s Chapters and additional volunteers help to raise awareness through many events, which include oral cancer screenings, educational fairs, tasting events, and move to music classes.
SPOHNC has developed a network of relationships with health care providers throughout the United States who specialize in oral, head and neck cancer. SPOHNC’s Medical Advisory Board consists of distinguished head and neck physicians treating patients at the top comprehensive cancer institutions.
Dr. Sangmin Lee shares the benefits of meditation and yoga and explains how mindfulness can affect your overall health.
Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.
How about this one? A positive attitude and mindfulness can improve treatment response.
Absolutely. Absolutely. Treatment for leukemia can be tough. Some of the treatment involves intense chemotherapy. Treatment for leukemia can involve stem cell transplant. And a key important aspect of treatment is being healthy and being optimistic about treatment, because a lot of treatment can have side effects, and side effects can be not as apparent if you are physically more active, and in a good state. So, I think that having a positive outlook is very, very important.
Quality of life issues are difficult for some people. How do you talk with your patients about their quality of life, and staying healthy during their treatment?
So, quality of life is absolutely important. I mean, the whole point of treating leukemia and any other treatment is not only to address the leukemia, but also have good quality of life. So, when discussing treatment options, you always have to balance the quality of life and side effects versus potential benefits. So, that’s always on our mind when discussing potential treatment options, and how it impacts the quality of life. Throughout the treatment process, we always tell our patients that being active, and having a good quality of life, and having good nutrition, is absolutely important, because that’s a key aspect of treatment for leukemia.
What about meditation and yoga for coping with anxiety around cancer diagnosis and treatment? Mindfulness.
Absolutely, absolutely. Those can help. Especially having leukemia, it’s very life-changing, so a typical way that patients are diagnosed with acute leukemia is patients live a normal life, and then they develop, all of a sudden, abnormalities. And they’re diagnosed with acute leukemia, and it can be very sudden. And it can be very difficult. So, that can understandably make patients have anxiety, and other issues.
And I believe that meditation, and yoga, and other exercises can absolutely help cope with this.
And there’s tons of resources for meditation and yoga out there, that are reliable.
Yeah. Should patients regard yoga and meditation as part of their treatment, as part of their self-care, during this process?
Absolutely, absolutely, if the patients are into meditation and yoga. Meditation is very harmless, and it can absolutely help in terms of guiding their mind through their treatment journey. Yoga is good if you’re physically able to do it. So, one caution is that, if you’re not someone who does yoga normally, then you should start off slow, and not push yourself as aggressively.
Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.
You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.
So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that. And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.
Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels. Just feel the body itself. Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way. Don’t analyze it. Don’t go into any thinking other than just noticing.
Begin to expand your muscles in your ribs as you take your next inhale. Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales. And I want you to bring to mind one thing you’re really grateful for today. One thing. The next before we move on, bring to mind a goal, an intention. It could be how you want to feel for the rest of the day, emotionally or physically. How do you want to feel or what do you need? Beautiful.
Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together. We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.
So as you inhale just open your arms like an (? cast) or goal post. And you’ll need to adjust this. If you have had surgery along the central plate, take it nice and easy, just open, inhaling. As you exhale bring your arms together, touching your palms together, elbows and forearms. Inhale, open the arms again. Exhale, closing the arms together. Just take two more only moving with your own breath. And closing. One more time just like that, beautifully opening and relaxing. And releasing the palms back down on your hands.
Close your eyes one more time. I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted. I just want you to notice. And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done. It’s published in the literature.
It’s called alternate nostril breathing. You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off. So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time. And I want you to breathe normally and naturally, okay. So this isn’t anything forced.
Close off the right nostril first, and just delicately push it. You don’t have to push it clear into your nose. Just delicately push it. Exhale all the way out the left side of the nostril. Then inhale through the left nostril, exhale out the right nostril. Inhale through the right nostril, exhale out the right nostril. We’re going to do three more of these. Inhale through the left, exhale out the right. Inhale through the right and exhale a little longer out the left. One last time. Inhale through the left and exhale longer out the right side.
Bring your hands back down to your lap and close your eyes again. Take a nice normal, natural breath. And I want you to notice what’s different in your breathing, if anything. Just notice it. Notice your heart beating. Come back to that intention or that goal you set for yourself. And softly blink open your eyes with a smile. I’m expecting all of you watching to be smiling even though I can’t see you. And Namaste.
Prostate and Head and Neck Cancer
What is significant to Kirk Beck is not that he’s had cancer. He delivers his story with minimal detail about his diagnosis, his treatment, and the subsequent life-threatening complications he endured as casually as he might tell you what he had for breakfast. It’s not until his wife Kelly joins the conversation that the full impact of Kirk’s medical history becomes clear.
“He wouldn’t have lived to be 50,” says Kelly of the first time Kirk was diagnosed with cancer. They weren’t married then, but it’s not lost on Kelly that their marriage never would have happened if he hadn’t survived. “It was caught very early and he was lucky,” she says. What’s lucky is that Kirk’s prostate cancer was detected at all. It was the mid-90s and he was 44, much too young to have a prostate screening in those days, but Kirk had a friend with the disease so during a routine physical he insisted, despite his doctor’s protest, that he get tested.
That test ultimately resulted in his diagnosis and a radical prostatectomy. Through the help of his brother, a physician, he sought treatment at Johns Hopkins Hospital where the surgery was done using the “nerve-sparing” technique — which helped prevent side effects such as urinary incontinence and sexual dysfunction. The surgery was a success, the cancer hadn’t metastasized, and Kirk didn’t require chemotherapy or radiation. “I got operated on and came home,” he says and in the 20 plus years since he’s had no recurrence or side effects.
He did, however, get another cancer diagnosis. This time he had tonsil cancer in October 2005. Within days his tonsil became extremely swollen. He had surgery the next month, followed by chemotherapy and radiation which was accompanied by a drug designed to protect his salivary glands from the radiation. This time there were complications. By New Year’s Eve he was back in the hospital and then again, after his second round of chemo, at the end of January 2006. He had what he calls episodes of extreme pain. “It was excruciating. Unbearable,” he says.
What he had was a blood clot, portal vein thrombosis, which is a rare condition to which he had a very rare reaction, and his small intestine had begun to die. He was unable to digest food and was vomiting a lot. His body had created what is known as collateral veins which were enough to keep him alive, but not enough to prevent damage to his small intestine. The hospital told Kelly that there was nothing more they could do. He was too high risk for surgery, they said. She was advised to contact hospice care.
“If I had listened to them, he would be dead. I just knew deep down this wasn’t supposed to be happening this way,” says Kelly, who instead of calling hospice called Kirk’s brother, the doctor, and got Kirk back to Johns Hopkins where they were able to save his life.
Of course, it wasn’t that simple. Kirk required intensive and careful treatment of his clot, continued radiation for his cancer treatment, and surgery to remove the damaged area of his small intestine. The process was scary and daunting and full of unpleasant details, but that is not what Kirk chooses to focus on. “If you look at it properly, it’s a gift. Not a penalty. Not a punishment. It’s an opportunity to reconsider your perspective on life,” says Kirk.
“It was a great experience. It might be strange to say, but its what I believe. It’s not something I want to go through again, but it was priceless. It changed my entire life and made me a lot more appreciative.” That is what is significant to Kirk. Not having cancer twice. Not having a life-threatening blood clot, but the living that he has done and the opportunity that these experiences have given him to help others. “I’ve been able to share my story and offer help to others that I couldn’t have offered without the experience. People knew I was speaking the truth. There’s no fiction in it. I try to give people a real and truthful perspective and that is invaluable.”
Kelly has a similar take away. She says the experience afforded her a new perspective, but also made her a strong advocate for patient empowerment. “Don’t always accept what they say. Be an advocate,” she says. “If you have a bad feeling and you are not getting answers, go elsewhere. There are so many places you can go for information. Take advantage of every opportunity. Having a good, strong advocate will save your life.”
In addition to his two bouts with cancer, Kirk has had a number of pretty considerable medical issues over the course of his 67 years, but he’s never let any of it slow him down. “Everyone has their own journey and also their own destination,” says Kirk who believes that a positive attitude is crucial to recovery. “You just can’t allow yourself to be destroyed by these situations.”
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
An expert panel discusses different methods to cope with anxiety and depression through all the phases of a cancer journey. Jane Williams, MSN, RN, FNP, says one of the best ways is to communicate openly with your healthcare team and loved ones. Letting them know how you feel and what you need can lead to you feeling better. Remember that you’re not alone in your journey, and sharing your emotions can help you figure out what works best for you, whether that be running, meditating, etc. Watch the full video below for all the panel’s advice on coping with anxiety and depression.
Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss healing vs. curing and how a healthcare team should focus on what it means to each individual patient.
Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the definitions and differences of supportive and palliative care, and what it means to them
Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and cancer survivor Randy Broad discuss the emotional side of cancer and how symptom and comfort management should be apart of your treatment from the beginning.
Deana Hendrickson talks about how important it is to connect with other patients and advocates online. Connecting online to patients with your same disease allows you to make amazing and empowering connections. Check out the whole clip below as Deana explains: