Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.

Martha Carlson

Martha Carlson received a diagnosis of metastatic breast cancer in 2015. Read all of 

This World Cancer Support month, I’ve been thinking about what it’s like living full time in “cancer world.” Not only do I live with stage 4 cancer, my days also often include time spent talking with other people touched by cancer.

Most often this is because so very many people lives are affected by cancer. It can be hard to find the information you need 

, and I am grateful to have access to resources. When I was first diagnosed, it took me over a year and a half to connect with other people living with my diagnosis. I knew one person who was living with a Stage IV cancer (colon), but he was not connected with the larger cancer community.

We were able to commiserate with each other, but in terms what I actually needed (and didn’t know I needed), our 2-person cancer community was a bust. I also knew a number of women who had had early-stage breast cancer and though they meant well, their experiences were really nothing like what I was confronting with a prognosis that gave me just 3 to 5 more years (thankfully, I’ve lived well beyond that dismal statistic) and three pre-teen and teen children.

When I met my first fellow metastatic breast cancer (MBC) patient, she immediately connected me with organizations that had plenty of relevant information and opportunities to meet other people living with MBC.

People living with a specific cancer often know more about available resources than even our healthcare providers (sorry docs), because it is their own lives they are wanting to save. When I am asked for help from someone newly diagnosed or their loved one, my first response is to reach out to the many advocates I know from nearly a decade of involvement in the cancer world. There is something to be said for the so-called hive mind when it comes to getting the right care for cancer. I'll shoot out an email asking if anyone knows the best doctor, hospital, or treatment for liver, lung, or brain cancer and get back multiple suggestions, usually asking for more information because cancer is so complex there is almost always a need to drill down into the specifics of an individual’s diagnosis.

Though I don’t like the need for it, I do enjoy sharing what I have been told about cancers less familiar to me than breast cancer. However, what I really love is that most of these emails include offers to speak directly with the patient or family member, links to patient groups that provide factual and helpful information about treatments, side effects, support groups, and other resources.

When you know one person in the cancer world, you will never be alone. You will be surrounded by hundreds or thousands of people who want you to get the right care, who will help you find the words that a busy doctor will understand, who will explain the ins and outs of managing disruptive side effects, and remind you to live one day at a time and to remember that you are here now, living.

Recently, I was asked by my husband if I knew anything about oncologists specializing in colon cancer in Chicago. I know very little about colon cancer, but I knew exactly what group to turn to and they did not disappoint (colontown.org), helping this sister of a newly diagnosed young man find information as he starts his care. Because here is the truth: being diagnosed with cancer is a shockingly lonely experience even if you are surrounded by family and friends who love you deeply. There are a lot of unknowns for most of us and sometimes even the most expected choices (like searching the web for patient groups) may not come to mind because you don’t know they even exist.

When you’ve been healthy and suddenly are not, you deserve good information and support. I am forever grateful to my cancer advocate friends who remain willing to share everything they know if it might help someone else. In a time where too often people are focused on keeping everything for themselves and letting others struggle, it is impossible to overstate the gift of the cancer community.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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Articles

Living with stage 4 cancer involves navigating a complex world of information and support. Connecting with others who share similar diagnoses is crucial, as they often possess more relevant knowledge than healthcare providers. The cancer community, characterized by its collective wisdom and willingness to share resources, plays a vital role in helping patients find the right care and support. Despite the inherent loneliness of a cancer diagnosis, being part of this community ensures that individuals are never truly alone, as they are surrounded by people eager to assist and share their experiences.

Living with stage 4 cancer taught me the power of community; connecting with others provides guidance, support, and hope in an often-lonely journey. 

Building Supportive Communities for Patients Navigating Cancer 

I know a lot about being a person living with cancer. I’ve been doing it for over 10 years, having started treatment for Stage IV cancer back in January 2015. I’ve had many opportunities to be my own best advocate, sometimes doing it well, sometimes poorly.

Because I have what I call “good patient” tendencies, I have to watch for times like these: not fully understanding what I’m being told but telling myself I’ll “google” it later; realizing I haven’t asked basic questions about the step-by-steps of a procedure; waiting until something gets worse to speak up; not taking up the space and time I deserve in the healthcare setting.

Not a single one of these behaviors leads to satisfaction with care.

My most recent cancer treatment session brought all of this up for me because even though I communicated my concern several times, I ended up with infiltration into the surrounding tissue during an IV of Herceptin. I was lucky it was “just” Herceptin, which isn’t a vesicant drug and unlikely to cause harm (though still possible). If a vesicant drug escapes the vein during treatment, it’s called extravasation and may require extra care to prevent or reduce lasting tissue damage.

I had learned of extravasation while receiving a taxane via IV rather than a port, because my port had to be removed due to clotting. Extravasation doesn’t happen frequently, but it’s important to know the signs of both infiltration or extravasation so that treatment can be stopped and risks reduced.

On this day, when the infiltration happened, I told the chemotherapy nurse that the IV didn’t feel right, but she assured me that there was blood return, plus I could taste the saline when the line started. I didn’t like how the IV placement felt, but my treatment currently takes under an hour, and I figured I could deal with it. Mistake 1: Denying what my senses told me, which was that something was wrong despite the normal signs of a good IV placement and reassurance from the nurse.

When an IV drug infiltrates tissue, two of the first signs can also be things that may occur normally, depending on the drug being given: pain or discomfort at the IV insertion site and coolness. Discomfort at the IV site can also happen for reasons like what vein has been used and even the impact of cold air temperatures or mild dehydration. Coolness at the IV site is a standard feeling for me when getting Herceptin, but I did feel like the site was colder than usual. Mistake 2: I looked at the area around the IV, decided it looked alright, and figured I was having some anxiety, which is also not unusual for me. So, I covered my arm with a blanket to warm it up.

Within a few minutes of this, I looked at the site again because the discomfort there felt a little more intense and saw there was possibly some swelling and the skin was paler. Swelling at the site and paler skin are additional indications of infiltration and extravasation. I called my treatment nurse over and told her, again, that something was wrong with the IV. She looked at it, reassured me again that it was fine, and turned to another patient. Mistake 3: I was certain there was infiltration, but I brushed it off in that moment.

Having told the nurse twice that I thought there was something wrong, I waited another 30 seconds and again looked under the blanket keeping my arm warm. Now there was clearly defined swelling around the IV. I loudly called for one of my regular treatment nurses.

The Herceptin was stopped, the oncology pharmacy was consulted, the IV was removed, and my arm was bandaged. I was told that there wasn’t much risk but to watch for discoloration and to call immediately if I noticed anything unusual with the site or my arm over the next few days. A new IV was placed in my other arm, this time by my familiar nurse, and everything went back to normal.

But I was left with the knowledge that despite advocating for myself, I still had a bad, could-have-been-worse experience. I knew the signs of infiltration and extravasation; I said something twice to my treatment nurse. Afterward, while finishing treatment with a new IV placed in my other arm, the nurse told me that I should have said something earlier. I replied that I had. Unfortunately, she repeated that admonition as I left. It’s no fun to be gaslit about healthcare, and it’s no fun to speak up and not be heard.

As has happened in the past, I’ll add this experience to my understanding of self-advocacy. A reminder that most of us know our own bodies far better than anyone caring for us. I could have been more forceful, and next time, rightly or wrongly, I expect I will be. Here’s to good care, healthcare providers who listen, and properly placed IVs.

Living with cancer for over a decade, the author shares insights on self-advocacy in healthcare settings. Despite being aware of the signs of IV infiltration and extravasation, the author experienced a challenging situation during a Herceptin treatment session. Despite voicing concerns, the author faced dismissive responses from healthcare providers, leading to a potentially harmful situation. This experience underscores the importance of trusting one's instincts and advocating assertively for oneself in medical environments, emphasizing the need for attentive healthcare providers and effective communication.

IV infiltration and extravasation remind this cancer patient of the constant challenges of speaking up and advocating for their own care. 

IV Complications and the Challenge of Being Heard 

Martha Carlson received a diagnosis of metastatic breast cancer in 2015. Read all of

Let’s get straight to the point: a good nurse can change your experience with cancer and cancer treatment.

I’ve been living with stage 4 cancer for over 10 years, and I’ve met a lot of nurses during that time. Fortunately, my nurses are a main reason I continue to find comfort at the clinic and treatment visits (I’ll ignore the nurse who once asked me “Are you sure you have more treatments?” when my schedule hadn’t been updated). My oncologist was kind and patient as I learned my diagnosis, but it was the nurses, whose kindness coupled with practical skill for the actual treatments, made it possible for me to walk through the hospital doors week after week.

The truth is that I wanted to see Barb’s smile and hear stories about Justine’s kids. I liked Cheryl’s strong hands. I wanted to know that life was continuing, that I wasn’t just a cancer diagnosis but a person with a life and interests outside of the hospital. Early on, I needed the matter-of-fact attitude of my nurses. They were warm but also efficient, a reminder to me that people get treated for all kinds of cancer every single day of the year. I might be scared and on unsteady ground, but I had good shepherds to get me through.

At my diagnosis, I was a health care novice for anything illness related. There was so much to learn and so many questions I didn’t know enough to ask. Because I was in the treatment room every week for six months, I had a lot of time to ask my treatment nurses a lot of questions. I could have searched for answers on the internet, but it feels so much better to get that answer and reassurance from a human. That moment of sharing a question that comes from fear, concern, or just lack of knowledge and being rewarded with information and human recognition is not replaceable by a machine spewing out AI answers.

One of the worst parts of my first 6 months of treatment was having my port removed due to clots, which meant getting a taxane chemo, Herceptin (trastuzumab) and Perjeta (pertuzumab) intravenously (through an IV). There were a few weeks with so many attempts to get an IV in that the nurses would pull my curtain closed to just let me cry and regain my composure. It was awful with a capital A. It was a very competent nurse, Freya, who, after searching for a vein using a portable ultrasound, told me to drink a lot of water during the 24 hours prior to treatment. She said it wasn’t enough to wake up and drink a bunch of water a few hours ahead of time. The key was to be truly well-hydrated. Unbelievably, that one piece of advice worked, and I rarely have a difficult time getting IVs to this day. Practical knowledge is the secret weapon of nursing — make sure you let them share it with you!

A good nurse and comfort go hand in hand, at least in my life with cancer. My first true experience of this happened after hospitalization over Memorial Day weekend in 2015. I can still vividly recall how difficult those four days were, an IV left in my arm for the entire time, hurting. On the last day, I was released to the cancer center for treatment, with that IV in my arm. I can still feel the emotions of entering the treatment area and being called in by Justine. She took one look at me and said, “What happened to you?!” It felt safe to express the fear of the last week, and it was a comfort to have her remove that old IV, clean me up, and start treatment in a quiet place. I hope nurses understand just how much some of us need their comfort as much as their knowledge. There are times when we are scared, and the safety of a familiar face and procedure means so much.

Nurses have looked out for me all along this road. They’ve been there when I felt alone, scared, confused, and more. There hasn’t been a time when they’ve tried to reassure me with empty promises of hope or false positivity. They tell me that it’s okay to feel how I feel but that we still keep moving forward. That there are things we can do to make life better. They ask about my kids, my bike rides, my travels, my mom and dad. In short, they work to make a connection.

Every May, there’s a Nurse’s Appreciation Week, but I suspect lots of us appreciate our nurses every day we get up and keep counting up from that cancer diagnosis.

Nurses play a pivotal role in the cancer treatment experience, providing both emotional support and practical expertise. Their ability to connect with patients on a personal level, coupled with their medical proficiency, significantly enhances patient comfort and confidence during treatment. The personal interactions and practical advice from nurses, such as hydration tips for IV success, are invaluable. Their presence offers reassurance without false hope, fostering a sense of safety and continuity. Patients often develop deep appreciation for nurses, recognizing their critical role in the cancer journey.

When it comes to living with cancer, your nurses make a difference.

The Gift of a Good Cancer Nurse

Cancer has been a part of my life for more than 10 years, and though the first stretch with it mainly had to do with a learning curve so steep that I think of it every single time I hear anyone give a newly diagnosed person advice to “just do this,” or “do that,” the idea that my body had betrayed me soon settled in.

Mostly, I felt and still feel like I couldn’t truly trust my body anymore. I was diagnosed with metastatic breast cancer when I had just turned 50, and though I was unknowingly suffering from it (extreme fatigue should have brought me to the doctor much faster), I retained confidence with physical activities. I’d always been strong and physically capable, and I couldn’t envision a time when I wouldn’t be. By the time I’d somewhat come to terms with my diagnosis — that “somewhat” is doing heavy lifting there — I had also developed chemotherapy-induced neuropathy in my hands and feet.

Despite consistency with exercise, that neuropathy meant that I am far more careful physically, and over time “being careful” has resulted in even greater distrust of my body. If I fall stepping from grass onto concrete, which happened last year, or drop something breakable because my hand strength has diminished, or any number of other things, I further limit what feels “safe” to do without any precautions.

The upshot: My physical world, and what I can do in it, shrunk.

After my last fall, where I broke both my upper front teeth and had abrasions on my face, I had to go to the ER to be checked for those and have my brain scanned in case of cancer progression. I had to start walking very slowly and watching every little step.

Needless to say, that caution turned into less movement, in a physical activity downward spiral.

Not the first time this has happened with me and cancer or its treatment side effects. Though I don’t trust my body to respond the way someone else’s might, I have learned that I can recover from these low points.

I try to return first to the idea of consistency. If you’ve been living with cancer, you know that it can be an inconsistent and bumpy ride, but what you do to counter that is to figure out what works for you and be consistent in practicing it. Maybe you need to have extra fluids or ask for ice for your mouth; for me, it’s been eating bland foods and very little dairy in the day or so before treatment. I’ve learned to control what I can when it comes to minimizing my worst treatment side effects.

I try to remember and apply that to regaining and maintaining physical confidence. Consistency in doing the exercises I need to do — stretching, strengthening, and sustained aerobics — is key, even though it is difficult to give myself the time I need to actually be consistent. And just like I rely on my oncologist and other doctors when there is a health issue, I listen to the experts about physical fitness. For example, when I fell badly last year, I ended up at both an orthopedic surgeon and a physical therapist. The physical therapist gave me many exercises to do with him and at home, but despite my frustration at limited mobility, it took me two additional months before I did the exercises as prescribed. Once I put the idea of consistency into practice, I began to see progress.

I am still not where I want to be — those months of less activity seem to have an outsize effect when you combine cancer and aging — but I am doing what I can to build more trust in my body’s ability to keep me safe and let me have fun this spring and summer.

Living with metastatic breast cancer for over a decade has led to a profound sense of bodily betrayal and distrust, exacerbated by chemotherapy-induced neuropathy. This condition has significantly limited physical capabilities, resulting in a cautious approach to movement and a reduced physical world. Despite these challenges, the importance of consistency in exercise and treatment management is emphasized. By adhering to a consistent regimen of stretching, strengthening, and aerobic exercises, and seeking expert guidance, there is potential for regaining physical confidence and trust in one's body.

Practicing consistency has made a difference for me while living with stage 4 breast cancer.

Martha Carlson

Building Supportive Communities for Patients Navigating Cancer

IV Complications and the Challenge of Being Heard

The Gift of a Good Cancer Nurse

Trusting My Stage 4 Breast Cancer Body

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