7 Things Not to Say to Someone With Terminal Cancer

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I am a 32-year-old wife and mother who was diagnosed with stage 4 adrenal cancer in 2015. This means I am terminal, and that likely every time I see someone I haven’t seen for a week or more, I look worse to them. As in skinnier, weaker, more tired, etc. This list is meant as a peek into my perspective to help make the remaining time my loved ones and I have together as meaningful as possible.

The list is also meant to be my opinion only. I don’t claim to know how others with disease feel about the things people say to them, but if others in my similar situation read this article and find they relate, I ask they leave comments below to let me and others know this is more than just an individual experience.

1. “How are you doing?/How’s your health?”

This a question I get across the board, from nearly everyone I see. It definitely has its place as a question from my caregivers who need to know how I’m doing day-to-day, and from close friends and family who are deeply concerned with my health and well-being.

The other group of people who ask me questions regarding my health are the doctors and nurses I see on a weekly basis, sometimes more, that I have to describe my every bowel movement to. To state the obvious, I find no enjoyment in these visits.

That means questions like these, about my health, aren’t something I like talking about and it takes a lot of time and effort for me to explain. It also means when visitors come and ask, “How’s your health?” I know it’s because they care, but I also feel at a loss of how to answer.

I’m usually unsure about how much they know about stage 4 adrenal cancer (which for 99.99 percent of the general population is about the same as they know about the eating habits of Australian stick bugs), and how much the question is asked out of really wanting to know or of wanting to be polite.

Either way, I don’t want to be dismissive of questions, but there are some days my only reply has been, “Fine,” or “I’ve been better,” and I feel guilty for not expounding more.

Instead of asking for a health update from me, try asking one of my caregivers. Or if the question about my health is to show me concern, then it might be best to steal clear of this question because I really, really, really, really hate talking about my bowels unless I have to.

2. “So… what do you think about Trump?”

I love to sit and talk, but have found it increasingly tiring to do so when conversations turn to politics, personal drama (my own and yours), or arguing. I find these types of conversations tiring as it is, so when I am 5 percent of my normal self and exhausted, I definitely don’t have energy to talk about charged subjects.

It’s nice and actually gives me energy when people come over when I’m home bound and keep conversation low-key. Such as sharing memories we had together, interesting new things going on in their life, etc. And to any questions along the lines of, “So…what do you think about Trump?” all I have to say is, “No comment.”

3. “Give me a hug!”

As I said before, I am at about 5 percent of my normal self, and usually I would go right for the hug and squeeze until my face turned blue. Now, however, any hug or attempt to touch me in anyway sends my body into a quiet panic.

If I reject someone, it’s never personal or because I don’t want to touch them, it’s because my whole body hurts and I can’t risk someone hugging me too hard or too awkwardly and causing me unnecessary pain. Also, if I have to reject someone, it’s nice if they respect my situation and stop making comments about it. I realize it stinks to be rejected for a hug, but it’s not personal, really.

Instead of going in for a hug, let me feel safe and in control by waiting for me to initiate physical contact. Additionally, soft and gentle touches to my hand and shoulder are a safe and welcome way to show affection.

4. “I hate seeing you like this/I’m so sorry.”

I appreciate being able to cry about my situation to loved ones and counsellors in order to vent my anger and process what I’m going through. I also want to be a shoulder for my loved ones to cry on and to share their grief about anything in the world, as long as it’s not about me. I am here for my loved ones, but I ask that no one grieve about me to me.

There is something called the “Ring Theory” of kvetching that ever since hearing about it has changed my life by helping me to set healthier boundaries.

The basic premise of the Ring Theory is to put the aggrieved or afflicted in the situation, in this case, me, at the center of the circle, then closest to suffer, my husband, mother and father, are the first ring outside the center and so on all the way to the lookie-loos (people who don’t know or care about me, but are interested in my disease and/or dramatic life situation).

The rule is that all dumping and complaining moves only from the center of the circle outward, and all comfort moves from the outside in. Any complaining, grieving, crying, etc. that moves into the center is against the rule because it damages those relationships and puts unnecessary stress on the afflicted.

This rule also helps ensure that I’m not the one comforting people, but that I and my close caregivers are on the receiving end of comfort and care.

5. “Let me know if you ever need anything.”

Similar to how the Ring Theory works, I don’t think the afflicted person should ever be asked directly what they need, as they should be focused on resting and getting better, not on reaching out for help.

Ninety-nine percent of my friends and family end their phone calls, texts and emails with the request that let them know if I need anything. This statement is well-meaning enough, but after hearing it the hundredth time over, it has started to frustrate me.

I’ve tried imagining what it would look like for me to actually take someone up on this offer. For example, calling Jenny, a friend from college that lives in Oregon, out of the blue one day and saying, “Hi, remember when you said to let you know if I need anything? Well, I am too tired to make dinner tonight so could you help take care of that?”

I would never do that. It’s simply unrealistic and would probably be more trouble than just making spaghetti myself. Therefore, if you think about it, telling someone in my position to let them know if I need anything takes the responsibility off of them to reach out to me anymore, and in a way relieves them from the burden of having to actually do anything for me.

It also puts the responsibility on me then to reach out for help, even though I don’t have the strength nor energy to do so. There have been month or more long stretches where I have been completely isolated and alone, but too exhausted to try to initiate a phone call or text. It’s during these times I wished my friends and family would reach out to me.

Instead of saying this well-meaning but unrealistic statement to a loved one in need, call their caregivers to see what ways you can be of help. The caregivers will have no problem finding something for you to actually do such as sending a care package, calling me to say “hi,” bringing over a family meal, etc. Or if calling a caregiver seems like too much, a simple card in the mail telling me you’re thinking about me can be very powerful and give encouragement and light where there is only darkness.

6. “My coworker’s cousin has non-Hodgkin’s lymphoma…”

Receiving a cancer diagnosis (along with an estimated one out of every two male and one of every three female Americans), I did not suddenly become interested in cancer nor a cancer expert. In other words, I’m neither interested in your second cousin’s pancreatic cancer, nor do I know anything about pancreatic cancer.

Personally, as a cancer patient, the last thing I want to talk about is cancer. Similar to how I don’t wish to discuss specifics of my health unless I have to, I also don’t want to talk about cancer and disease unless absolutely necessary.

There are are thousands of types of cancers out there, each one affecting each person uniquely, so it is also unrealistic to think I would have knowledge of anything outside my own rare disease. It’s like expecting someone who just got a their first golden retriever puppy to be able to discuss the controversial breeding practices of the American bulldog.

7. “You’re so brave and strong.”

As I said, one out of every two to three Americans will get cancer at some point in their life, and each one of these millions of people will battle (or not battle) cancer in their own way. And whatever path they choose is the right one. Not because they are strong or brave, but because they have no choice.

Since cancer is not a choice, it seems unnecessary to me to praise a cancer patient’s reaction to their disease. Often their reaction arises from their circumstances. For example, I may appear strong and brave to others because I underwent chemo, radiation, etc. But others in my similar situation might have chosen alternative treatments or no treatment at all. Does that make them weak? As I said before, there is no right or wrong, brave or timid, strong or weak choice when it comes to cancer and disease.

Instead of praising someone for how they chose to approach their disease, praise them for things relevant to them such as a new haircut or a pretty sweater they knitted. These sorts of compliments make the receiver feel seen and loved, while complimenting someone’s strength may make them feel like they can’t show weakness or like their disease is what defines them now.

In the end, us cancer patients and our loved ones are all trying our best to understand and support one another. My hope is that by reading this, we all might gain a deeper understanding of one another and how best to cope with this wretched disease.

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When the Doctor Told Me My Biopsy Came Back Positive for Cancer

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It was a beautiful spring morning. I had the day off from work and was enjoying the birds singing and the warmth of the sun on my shoulders. The phone began to ring. Answering it, an unfamiliar voice asked to speak to me. Stating it was me, she proceeded.

“This is Dr. Hash from the dermatology center. That biopsy I did last week has come back as positive for a very rare form of cancer…”

At that moment, everything suddenly seemed to go into an echo. I suddenly felt as if my legs became weak, and I quickly moved over to a nearby chair. My throat closed up, and my mouth became so dry, I could barely form words. I sputtered in my speech, asking her to repeat the rest of what she said. “You have a very rare cancer, called dermatofibrosarcoma protuberans. Get a pen, and I’ll spell it out for you. Then I want you to research it and call me back. Then I can answer your questions. I’d like to get you scheduled for surgery as soon as possible.” I was numb at this point.

On a cold November afternoon in 2009, I got thrown off a horse I’d recently adopted. I
landed in the emergency department with two fractures of my left hip and pelvis, three fractures of my left shoulder, and a mild concussion. I was out of work for three months recovering from all of that. I had developed a rash on my right arm that wouldn’t go away. Finally, after all the fractures were healed, I made an appointment with a dermatologist about the pesky rash.

While in the exam room with the dermatologist, I was busy showing her my arm and going on about the rash. The exam gown I had on had slipped off my right shoulder. The next thing I knew, she was staring at my shoulder and touching it, looking puzzled.  She then said, “I’d like to get a biopsy of your shoulder here. I’m not happy with this shiny area.” It was something I’d had on that shoulder for many years and never really paid any attention to. In a few minutes, an assistant was bringing a tray into the exam room with a scalpel, sutures, and a syringe with numbing medicine in it. I sat there as the dermatologist injected the local anesthetic on my right shoulder, took the biopsy, then sutured up the area. It all happened very quickly.

Walking to my vehicle, I dismissed it all from my brain. I was sure the doctor was simply being overly cautious.

After getting off the phone with Dr. Hash, I quickly began reading about the rare form of cancer. I discovered that it’s slow growing, grows outward, is found mostly on the torso, arms, legs, and sometimes on the shoulder.

If successfully removed, it has a good prognosis. I called her back and we discussed my
findings. She sounded optimistic, yet already had her assistant schedule me for the following week for surgery.

A week later, I was being wheeled into the operating room. It actually took two surgeries. The first surgery was performed by a specialist, a MOHS surgeon. The second surgery was done by a plastic surgeon to reconstruct the gaping foot-long wound over my entire right shoulder. The MOHS surgeon had to remove everything right down to the bone, so the area was very deep and long. The plastic surgeon was able to get it all back together without a graft, but the skin was pulled so tight, I wasn’t able to turn my head to the left for over two months.

It wasn’t the surgery and scar that caused me great pain. Yes, of course there was physical pain from all that. But the emotional scar of having cancer, and always wondering if it will come back. It makes you feel as if you always need to look over your should because it is stalking you. Even though I go for follow-up visits, I still never feel free. It makes me realize how precious each day truly is. It makes me work harder to get my message out as an autism advocate.

Even when you are in remission from cancer, that word stays in your mind, tucked away, and affects you for the rest of your life.

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What No One Told Me After Someone I Love Was Diagnosed With Cancer

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My sister was diagnosed at 21 with a cancer usually only seen in older adults. She had become somewhat unique. Luckily, a talented surgeon and incredible oncologist kept her with us. I am so thankful for that to this very day.

But what no one told me about after her diagnosis was the guilt I would experience. They didn’t tell me that I would wish every day it was me and not her. That I would have nightmares about losing her every night for the next five years. And that despite the melatonin or sleep aids I took, I still had those nightmares.

They didn’t tell me that when my sister became emotional, I wouldn’t be sure how to help. That when my mom cried, I would wish I could take away her pain and fear. But there was nothing I could do. I felt guilty. So I became a “fixer.” I tried to fix everything around me. I tried to fix things to make up for the one thing I could not fix. I started taking over housework, cleaning, trying to make everything right.

The advice I have for those people struggling, given to me by a trusted mentor, is to let your guilt go. This place, this Earth we live on was meant for us. It was meant for us to cherish our moments. Laugh. Cry. Get angry and love each other. It was meant to help us learn to love and to make and foster families. Cancer should not stop that.

The longer I spent moping around and crying at the thought I could lose my sister was the more time that I was losing with her. So now, she and I travel the world, looking to spend more time together than we had ever spent prior. She’s my plus-one to events and I spend a little extra more on her birthday gifts than I used to. But I have learned that all these things, material things, are nothing without her.

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The Best Advice I Could Give You After a Cancer Diagnosis

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Getting a diagnosis of any kind is scary.

When you hear words like “cancer” or “chronic illness” come out of a doctor’s mouth, it’s easy to let fear take over, causing your body and mind to go on overload.

I remember the first time I had cancer. I was 26 years old and went to see my family physician to get some cream for an unsightly rash on my arm.

I didn’t think much when he said he wanted to run a few tests because he was always looking to earn a few extra bucks with labs.

What I never expected was to be sitting across from him a week later as he was showing me the baseball-size tumor sitting on my heart and giving me a referral to an oncologist. I heard something about limited options and positive odds, but there was too much noise from the screaming in my head to really understand what he was saying.

The next couple weeks where a blur of well-wishers informing me of secret diets and bad tasting herbs that cured my particular cancer. What was even worse was listening to untold stories of somebody’s aunt or cousin who was cured spontaneously. Since that didn’t seem to be happening for me, it just made me feel bad.

People mean well, but there are some really bad recommendations of what to take or do out there in the world. Through six different diagnoses of cancer and autoimmune disease, I feel like I’ve experienced them all.

I’ve sifted through the bad advice to find the gold nuggets I wish I’d had when I got the bad news.

Here’s the best advice I can give you after a devastating diagnosis:

1. Slow down there, partner – Panic is an easy “go-to” when you hear terrible news. Your body automatically goes into a fight-or-flight response when you’re scared, which is why you want to run out of the room screaming. Remember to breathe. When you feel the rush of adrenaline coursing through your body, close your eyes and take 10 deep breaths. This pattern interrupt is scientifically proven to help change the stress response you feel and get out of “freak out” mode. I still do this exercise whenever I need to get labs or tests done to keep calm and carry on.

2. Do your homework – The first thing your doctor may tell you is to not Google your diagnosis. Although there is a lot of information that may not be in anyone’s best interest on the internet, I think it is important to get as much information possible about your disease. Also, make sure you take notes and have a list of questions to ask at your next doctor’s visit.

3. You don’t have to be quick to share your news – Hearing a loved one has serious health issues can be traumatizing. I spent much of my time in the early phase of diagnosis consoling my friends and family and reassuring them I would be all right. It was even more exhausting than having to deal with my own concerns. Feel free to spread your horrible news to the grocery checker, the postman, or clerk at the dry cleaner, and not tell anyone you truly care about until you are emotionally ready. It may fell unbearable to not blurt it out at the dinner table, but you can sit with your diagnosis for a moment until you are strong enough to handle them. Remember, they are scared too, be patient.

4. Find a doctor who will participate in your wellness, not your illness – Many health professionals are treating the illness, not the person. If you doctor is checking his watch or dismissing your concerns, do not hesitate to find another one. They work for you, not the other way around. Even in HMOs you can request a different practitioner if you are not getting your needs met.

5. Clean your house – There is no room for energy drainers in your life right now. Unload activities or people who aren’t serving you. It’s time to unapologetically put you first and clean out anyone or anything cluttering your life with drama.

6. Get uplifting support from folks who understand – Not all support groups are created equal. Some like to wallow in misery. Facebook as some great private groups filled with people just like yourself. Find the one that fits the best, and get to know the people there. They can also answer your questions about symptoms better than medical professionals sometimes because they have physical experience with them. Doctors only have book knowledge about your disease.

7. Don’t be afraid to explore other options – Stay grounded in your treatment, but don’t neglect other possibilities to treat your whole body. I found many complementary modalities to help speed my recovery. Find what works best for you.

8. Clean your internal house too – Your body needs all the loving support it can get. Take a deep dive into your kitchen pantry and get rid of anything with more than three ingredients on the label. Would you put cheap gas in a Rolls Royce? Start eating more real foods that come from the earth. For more tips and recipes check out these resources.

9. Ask yourself this question: “What if this where happening for me and not to me?” – We’ve all bellied up the the pity party bar at some point and poured ourselves a strong one. Once that is done and you are ready to move forward with your recovery, it’s time to turn your medical trauma into wisdom. Ask yourself why this is happening for you and the lesson may reveal itself. Then follow the answer to find your deeper meaning.

10. Never lose hope – Winston Churchill famously said, “If you’re going through hell, keep going.” He also said, “Never give in. Never give in. Never, never, never, never.” No matter what your diagnosis, keep moving forward in your search for wellness. You may not be perfectly healthy but you can always strive to be the best version of yourself no matter where you are in your healing journey.

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On Being Scared of Cancer

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I found out a few days ago that my cancer has returned for the fifth time. A relatively small recurrence with just three tumors, it could have been much worse. I am lucky.

At the start of my brother’s first illness and then of mine, my mother used to say that we all have a bus in our lives, a bus that will hit us and take us away. This could be cancer, a freak accident, old age, sepsis, depression, even an actual bus. What matters, however, is how we deal with that bus when it hits. If we rage, or if we sit down and let life pass us by. Sometimes we have no choice. So far, I have had a good choice. I am lucky.

I start a new chapter of my life next week to become a social worker. I now have this opportunity, and it fills my heart with joy and anticipation. On the flip side, it also fills my stomach with an anxious ache. Will I be able to finish this program? If I do, will I be able to work as a social worker for along time? Will I be able to truly affect change? With adrenal cancer, you never know when the other shoe will drop. My shoe seems to be dropping about every three to six months, and so right now I am trying to laugh a lot and be as cool as a cucumber. Truthfully, I am still here and still laughing, and so I am very lucky.

I have a beautiful family, my baby brother looking out for me from wherever he is, a wonderful support system of friends, and advisors who encourage me. My community gives me hope and strength and has somehow made it possible for me to accept my “new normal” and try and roll with the punches. Many people don’t have the kind of community with which I have been blessed. I am lucky.

Despite these things, occasionally there are dark moments when fear pushes out the rest. I wonder to myself whether or not I would be OK leaving the world. I wonder if there is something I am doing wrong or not enough that I am doing right. Mostly I am just scared to leave my family and family of friends behind me. After that moment passes, however, I snap to. I realize that with luck and love, I need to have the courage to face whatever comes my way. I owe my life to the determination and perseverance of the people around me. I owe most of my life to my brother who passed away with a smile, our middle brother who jokes and laughs, my mother with her unwavering strength and positivity, and my family of friends that keep all of us afloat. I am lucky.

I have realized over the past few years since diagnosis that I can feel lucky, grateful, and blessed. And trust me, I do. But I am also allowed to be scared. When I talked to my oncologist yesterday and found out I recurred again, my friend turned to me and said, “OK, you have one day to freak out. One day to cry and rage and be upset. And then it’s go time.” So, I cried a little. I listened to a sad song and freaked out and allowed myself to be terrified. And then I put on my resolve and went through the rest of my day. There are only three new tumors, not 40. They are all treatable, and I have many more options. I am fine. I will be fine. It’s just a little setback.

Since then, I have had a few more moments of doubt, and I allow myself to feel those moments. If I don’t allow myself those moments, the scare piles on and explodes when it is unexpected. So… here is to treatment, to moving on, and to being on the up and up. Fear never goes away; however, it is a constant reminder that I still have things to be thankful for. I am lucky.

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8 Tips for Coping With a Parent’s Cancer Diagnosis While in College

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Last year, in the middle of my fall semester, Mom was diagnosed with Stage 3 cancer. She needed emergency surgery. Everything was happening so quickly, and I couldn’t tell up from down. Yet, through this turbulent semester, I learned eight ways to cope with Mom’s cancer diagnosis while attending college.  

1. Accept the diagnosis.

When Mom was first diagnosed with cancer, I desperately denied it. I couldn’t bury my head in the sand deep enough. Not accepting the truth hurt me more than accepting the truth. Denial is like a stumbling block that doesn’t allow you to move on while acceptance is a long stretch of road. You might not know where you are going to end up, which can cause increased anxiety, but at least you’re going someplace. 

2. Build a support system for you.

After Mom went into surgery, I took over her household duties on top of my own college and work duties. It was overwhelming. There were times when I was so stressed out all I could do was cry. With the help from extended family, friends and religious counseling, I was able to make my own support system. They were there for me by visiting me, helping me run errands or just giving me a hug. 

Other free support tools include hospital support groups for loved ones of cancer patients, cancer support hotlines and counseling at your college.   

3. Be honest with your professors.

In the beginning of the semester, I was in two online classes and one on-campus class. I would show up early to my on-campus class. Then, because of Mom’s pre-surgery needs, I started coming to class late. When I told my professor I would need take two weeks off to help Mom with post-surgery, he was very supportive. Thanks to his support, I was able to stay in that class and learn more about a subject that I enjoyed.   

 4. It’s OK to take less classes or time off.

Realizing that Mom needed more help than we had expected, I had to rearrange my class schedule. If you feel that you need to either drop a class or take a semester off, contact a counselor at your college. They can help you modify your classes and academic plan to your needs. But remember, if you decide to drop a class or classes, you can always retake them later. Don’t add unneeded stress to an already painful situation.

5. You cannot control the cancer.

As much as I don’t want Mom to suffer, there was nothing that I could do about the cancer. You cannot control something that’s out of your power. Although there are things we can control in our daily life, like submitting homework early, there is no guarantee that submitting the homework will be problem free. Your printer could jam while printing your homework or your aunt’s cat could use your homework as its new scratching toy. Although I can make suggestions, at the end of the day, Mom and her doctors will make the best decision to deal with the cancer. And I have to trust that.     

6. Don’t let the cancer consume you.

During the beginning of Mom’s cancer, I constantly thought about all the awful things that could happen to
her. When she suffered complications after her first surgery, my imagination went wild. The fear of losing Mom was so strong. Every time I had a dream, it was nightmare of the cancer taking her. As difficult as it was not to think about what could happen, I tried to focus on what I could do to help her.    

7. Find positive outlets.

To deal with the stress and pain of Mom’s cancer, I found multiple outlets to channel that nervous energy
into something positive. My outlets included dancing, watching happy movies and comedy television shows, surfing YouTube, listening to music, reading, knitting, going to comedy shows, putting together cutie outfits and writing. These outlets have helped me to calm my nerves.

8. Take care of yourself.

I cannot stress this enough. The best way to help your parent is to help yourself. If you neglect your needs and overwork yourself, you will make yourself sick. Getting yourself sick not only puts more stress on you, it also puts more stress on your parent. As difficult as it is to find time to care for yourself, you have to. To take just a few quiet minutes to lie down can make a world of difference. 

As difficult it is to cope with a parent with cancer, I find comfort in knowing that this experience is making me a stronger, more dependable person.

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