Respite Reflections

Reflections on Respite

A cancer diagnosis creates emotional and psychological turmoil for the entire family. Life is drastically altered – it becomes immersed in all-that-is-cancer. Having the right type of respite care is a life jacket that provides temporary support. Whether in-home, outside, informal or formal, respite care is the “extra lift” that keeps your head above water.

This week, I returned from my first respite. It took a bit of planning to make it happen and re-entry has been a bit rough; yet, I’m grateful I had the chance to take a break. In a comfortable space surrounded by friendship, I had time to reflect and reconnect with me, while knowing things at home were covered. Here’s what I learned:

I felt – everything.

I was excited to get away, to laugh with friends, to relax and have fun. And I did. We had dinner out and caught a jazz show, ate our way through the farmer’s market, cooked yummy meals, went to the beach and explored the local shops. We walked everywhere – with a dog, of course.

Seeing couples enjoying dinner out and walking down the streets together reminded me of what our “normal” used to be. I was acutely aware of how my life and our marriage has changed. Allowing myself to feel that loss was an acknowledgment, dare I say, acceptance that what is, is. And, not all of it is bad. I remind myself he is living with cancer, these feelings are normal and we have choices. I remain hopeful and allow myself to grieve what no longer is.

I embraced not having ANY responsibilities.

I slept; I read a lot; I got up slowly. Respite care offers caregivers a sense of freedom and lightness when not bound by doctor appointments, medication schedules, and daily caregiving duties. We are surrounded by cancer at home. I’m used to seeing the physical responses to treatment and making adjustments in my day to compensate for what’s happening at home. The break allowed me to rest, it fueled my positivity bucket and helped reinvigorate my creativity to solve the challenges that lie ahead.

Re-entry requires courage and compassion.

Getting back into the swing of things after vacation can be tough. I try to keep that “vacation mindset” going as long as I can…it usually lasts 24-48 hours until I wind up in a silly meeting or read an annoying email. Re-entry after a respite feels quite similar. There’s a routine already established for day-to-day caregiving and catching up with work and home details are a part of the mix. Thankfully, I felt rested and ready.

While away, Jeff was admitted to the hospital (more info). We spoke every morning before the doctors made their rounds. He was discharged several days before I returned and friends that were providing care had it covered. My hope was that I was coming home to stability. I returned to a fragile situation (tip: expect the unexpected – things can change on a dime with meds, treatment, etc.). So, I got the bone broth out of the freezer,  unpacked my suitcase, and jumped into the role of the detective so that together, we could find steady ground.

Respite Care Resources – all FREE of charge:

In the search for respite care options, I came across several organizations and programs that provide free and/or affordable solutions. Some programs provide families with a well-deserved break from cancer and are fully-covered financially by generous supporters. I like that these organizations offer programs that improve the quality of life for the entire family.

Why Secondhand Cancer

SHC was created to equip cancer caregivers with real-life perspective, practical tools, and resources that allow them to better cope with the daily demands of living in a house where cancer exists.

Cancer caregiving is a demanding and isolating job – no one can do it alone. We tap into the seasoned caregiving community to offer different insights on managing the “cancer journey” with strength, courage, and compassion. We encourage those supporting a loved one battling this disease to retain (and regain) a quality of life that celebrates their individuality – and not solely as co-survivors and caregivers. And that no matter how challenging the experience becomes, there are solutions – there is help.

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3 Steps to Planning Respite Care

Here’s what I know about respite care – it helps caregivers better manage the care of a loved one battling an illness. It offers temporary relief care to give primary caregivers a well-needed break to relax and have time away from day-to-day caregiving responsibilities. It can be for a weekend, a day, a few hours – either regularly or one time. Most often, respite care is provided by friends or family members. It can also be provided by paid caregivers, either in-home or residential care outside of the home.

“If you are a cancer caregiver, you are well aware of how stressful and overwhelming it can be at times. Depending on your personal situation, you may find yourself with little time for yourself, missing out on important appointments, and even neglecting your social life.”

“Respite care is vital for your emotional and physical health.” – Lisa Fayed, cancer advocate and patient educator, verywell.com

Step 1: The Decision

10 days ago, I pulled the trigger and planned a trip to visit a girlfriend in Maine. She moved over a year ago and I haven’t seen her since the move. I’ve known her for 20 years – that’s a lot of shared stories. She’s one of my dearest ‘peeps’. 

I’ve been trying to find a window of time in between treatments, doctor appointments, work and graduate exams to visit her. With everything going on, I finally landed on a date. So, Jeff and I cashed in a bunch of airline miles (travel tends to be last minute these days) and I leave in two days. I’m excited and a bit nervous. It’s my ‘birthday’ trip – I turn 45 on Friday.

Step 2: The Planning

I’m a little apprehensive to spend a birthday away from him. It’s not that birthdays are super important to me. It’s that I’m very aware of making as many memories with him as I can and that includes celebrating everyday moments and milestones together.

Grocery shopping, support at the house, pharmacy refills, care for the dogs, cooking, doctor appointments – I’ve been making calls and running errands. Feeling pretty good, I have most of it covered and backup plans in place, just in case.

Step 2a: Expect The Unexpected

Today, I learned that Jeff will be admitted into the hospital tomorrow morning for pain management. He’s been having bone pain flares and his medical team decided the optimal path to get the pain under control is to admit him for 3-5 days. So much for finding the “stable” window to get away. Crap. 

My initial reaction was to cancel the trip yet after talking through it together, we decided a break would create the relief I needed. Thankfully, one of our closest friends will help at the hospital, with driving, with the dogs and with everything else that comes up. #Relieved.

Tonight, I’ll create our list of questions for the medical team to help maneuver the hospital stay.

Step 3: Let Go of the Guilt (it’s normal)

As cancer caregivers, we know taking breaks are a necessity. For me, I get to yoga, or push myself to have tea with a friend – it gets me out of the house and into the world and offers up a little boost of fresh air that helps to create balance and perspective.

There isn’t a day that doesn’t go by where Jeff and I don’t think about cancer and the impact it has on our lives. To leave for a full week – wow – that’s a luxury. I am grateful we can make it happen, right now. I’m also wondering what it will feel like.

As a cancer caregiver, I’ve learned it’s OK to get regular forms of relief and if I don’t make the time, the Crankasaurus re-appears. I want to be able to support Jeff and our family to the best of my abilities and be focused on caregiving duties. Whether it’s a lunch out, a relaxation class, a half-day, weekend or week off, respite care is about recharging, resting and regaining strength.

How do you get the respite care you need? 

Resources To Help Make Respite Care a Reality:

thethirdwheel-secondhandcancer

The Third Wheel

We didn’t invite it – it just showed up. It’s inserted itself into every aspect of our life. It’s dominating our thoughts, feelings, family life, hobbies, emotions, and beliefs. We really didn’t want it and now that it’s here, we want to get rid of it.

Pain.

Jeff’s been having bone pain in his hip and back coupled with what we think may be nerve issues. It’s persisting to the point where he’s started using the crutches again. The sticks, while they offload some of the pain caused by weight, they don’t offer a sustainable form of relief. Physically, they have become the newest accessory in our family room and bedroom reminding us that something has changed. Psychologically, we look at the sticks and wonder – is this a sign that we’re one step closer to Jeff having permanent mobility issues?

I was researching how other cancer patients and their loved ones manage issues with pain. One husband was talking about his wife’s chronic pain and the impact it has on their relationship. He said:

Pain is a third person in our marriage.

Pain has been a part of our marriage for a while. With 100% certainty, I know Jeff’s ready for it to pack its bags and get the hell out of the house. I feel that way too. Yet, it’s still here. We talk in 1-10 pain scales, knowing that anything below a 6 is acceptable. We celebrate a ‘below 4’ day by getting out of the house together (he hasn’t had one of those in months). We measure how good a day is based on the number of pain pills he takes. We modify chairs, beds, and pillows to offload pain. We try Epsom salt baths, medical cannabis, massage and other alternative therapies.  All of this is in addition to the pain management strategy we’ve created with the oncologist. Thankfully, latest scans showed no new tumors so our hypothesis is that something else is going on.

Relief is the goal – relief from the physical pain and its psychological effects (sleeplessness, irritability and fatigue) – all of which impact daily living and the two of us connecting.

We’re trying to remain brave and look at this as another ‘blip’ in the road. Just another stopping point on our quest to improving his quality of life. But in truth, it’s hard to see him in a place where he’s fatigued, consumed by pain and taking action is a challenge.

For those of us who don’t experience chronic pain, the thought of not taking action to resolve may seem ridiculous. For those battling cancer, managing pain is important to control and get ahead of. It’s also one of many issues they endure daily. They may not be ready to jump in, yet.

There are times when a bit of ‘tough love’ sparks the fire (having a member of the medical team deliver tough love also works). They may want our help researching, setting up appointments, investigating and advocating. Other times, what our loved ones need most from us is compassion and understanding with no action. Repeat. No action – what?!

Ask any cancer caregiver – it’s not in our DNA to sit back and watch, yet that’s exactly what we may be asked to do. For me, that’s the hardest part. 

When we reach this place (and we reach this place frequently when new issues pop up), I’ve learned to pause…and ask questions to understand what’s important to him.

  • What does he really, really want? (not what he thinks I want or what he thinks he should do)
  • What does he want to do with this information? (the answer might be “nothing, yet”)
  • What is his mind & body telling him about what he needs?
  • What is he willing to commit to now?
  • How can I support him in a way that feels good?
  • What pace feels right for him, right now?

Sometimes our loved ones have the answers to these questions. Sometimes they need time to reflect. We sat on the bed together and this time, he asked for help setting up appointments.  He was ready to take action. And so, we spent the next 10-15 minutes making calls together. We have appointments set up with the pain center, pain clinic, physical therapist and chiropractor. And, we’re hopefully optimistic that the third wheel will be packing its bags soon.

How do you work together to manage chronic pain? 

Other Good Resources:

anotherbirthdaycelebration

Another Birthday Celebration. Nice Try Cancer.

Jeff turns 55 today!

He’s officially eligible for an AARP senior discount. I got excited when I thought about the discounts we might be able to get now that he has his ‘official’ seniors card. I told him it’s time to start testing and see what deals we can score. He rolled his eyes. I think I’m more excited. Crack me up.

55 is too young for a man to be battling metastatic prostate cancer. The median age of a man with stage 4 prostate cancer is in the mid-seventies. The median age at death from prostate cancer is 80 years old.  

1 in 7 men will be diagnosed with prostate cancer in their lifetime.

Much of the literature and research on prostate cancer states that most men will die with prostate cancer; not from prostate cancer. In general prostate cancer has excellent survival rates, but death rates are higher in African-American men, men who have advanced stage cancer, and men who are between the ages of 75 and 84. 

What the research is also showing is that when younger men, like Jeff, are diagnosed with prostate cancer, it tends to be a more rare, aggressive variant. Adding to the complexity is the lack of published research (there’s a lot of research underway) which creates challenges when determining the treatment protocol of someone with a rare subtype of prostate cancer. Fortunately, we’re tapping into the experts at Seattle Cancer Center Alliance with Fred Hutchinson Cancer Research, MD Anderson, and the Mayo Clinic. 

Early onset prostate cancer tends to be aggressive, striking down men in the prime of their life. These fast-growing tumors in young men might be entirely missed by screening because the timeframe is short before they start to show clinical symptoms,” says Kathleen A. Cooney, M.D., professor of internal medicine and urology at the University of Michigan.

There are quality resources online that provide prostate cancer support. Below are several we have found valuable.

So, nice try cancer. Today, we celebrate a milestone birthday together. 

Tomorrow, we’ll focus on you. It’s scan day.

Must-Have Resources:

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Sitting Courtside

“You have a high level of Contentment – usually good natured and happy, grateful, optimistic and satisfied despite circumstances.”

That’s what the personality assessment said as we reviewed the results in class this week. After class, we were asked to dissect the results with fellow students.

Jen, how do you have a high level of Contentment when your husband has stage IV cancer?

There’s no doubt that what Jeff and I are going through sucks. If I allow myself to dwell on the cancer circus, I would walk through life an emotional mess. I’m watching the person I love, who I want to grow old with, battle an incurable disease.

Every time I see him wince from bone pain, hear him throw up or limp over to the sofa just to be in the same room with our family, I fight the instinct to fix it – to do something. I look at our wedding pictures or last year’s Halloween pics when he was 45 pounds heavier, active (and with hair) and I get tearful. And, I think about what life will be like when he’s gone.

Every day, Jeff and I have choices to make. Choices whether to do or not do treatment; choices around our attitudes, how we show up for each other, how to nourish ourselves and choices to make for the future. As a cancer caregiver, I have choices to make, many of which, when I dig deep – I don’t want to make. This is “heavy stuff”. Yet, I make them anyway, from a place of love and gratitude.

I’m sitting courtside and I am…for the most part, content.

When caring for someone with metastatic cancer, these feelings are normal. They are reasonable. It’s OK to grieve all of the changes in life that are happening as a result of cancer. It doesn’t mean I’m giving up, that I’ve lost hope or that I love him any less. 

There are 2 ways Jeff and I can look at the situation:

1) He is dying of cancer.

2) He is living with cancer.

We’re choosing option #2 because #1 is too damn heavy and dark. It doesn’t mean we avoid getting sad or angry. We crawl under the blankets, feel the pain and we admit when we’re afraid. Yet, we’re also grateful we’ve been given the gift of time – time to sit on the deck, play with our dogs, visit close-to-home places on the bucket list, and time to just be with each other. He is living with cancer.

Other Good Resources:

shc-detectivecrankasaurus

Are you a Detective or Crankasaurus?

Caregiving is a 24/7 gig. Supporting Jeff’s wellbeing is always on my mind whether I’m physically doing something to help him or thinking about how to manage a particular issue we’re facing.

Hopeful Detective

As a cancer caregiver, I watch for changes, dive into problem-solving and advocate for Jeff. The smallest change and we’re on it. I research side effects, co-create med schedules, seek out treatments, deal with insurance paperwork, make healthy meals – the list goes on.

I see cancer caregivers as hopeful detectives – seeking legit solutions that will provide comfort and improve the quality of life of our loved ones.

34 million adults in the U.S. are family caregivers and on average, spend 24.4 hours a week providing care. Nearly one-quarter provide 41 or more hours of care a week. (2015 Report: Caregiving in the U.S.)

The report states caregivers help on average with 4.2 out of 7 instrumental Activity of Daily Living (ADL) including transportation, grocery or other shopping, housework and personal care activities. This doesn’t include responsibilities such as coordinating and advocating for their loved one’s health with providers, insurance companies, and other professionals. 

Knock, Knock, Who’s There? The Crankasaurus

The burden of care is wide not to mention the heightened emotional stress caregivers experience. 8 out of 10 caregivers state they could use more info or help on caregiving topics and 42% want info about managing their own stress. And, the average length of a family member in a caregiving role is 4 years with a quarter providing care for 5 years or more. 

7 years. It started in 2006 when Jeff was diagnosed with head/neck cancer, followed by a multi-year recovery from the accident. The last 2 years have been the hardest.

I read and hear it often…“You need to take care of yourself so you’re better able to take care of your partner.”

It’s true. 

Every article that provides caregiving guidance speaks to the importance of taking care of self. Tips to help with self-care; seeking support; organizing medical info to make appointments easier.

I like that I’m surrounded by ideas to inspire self-care. It reminds me not to let myself get so immersed in the chaos that I forget to do things I enjoy and that bring perspective, especially helpful as we face life-threatening stages of cancer.

When I don’t take care of myself…enter the Crankasaurus.

What’s a Crankasaurus? It’s when I get irritated…at everything. Irritated in the medical process, the waiting, the traffic to/from treatment. Unexpected and last minute changes find their way into an already packed day and put a thorn in my side. The shit show bubbles over and I get angry.

Taming the Crankasaurus

For my fellow Crankasauruses (Crankasauri?) it’s normal to have these surly moments. The key is to keep things from being a 24/7 cranky zone.

I am steadily self-nourishing.

This is my new mantra. The words “practice self-care” weren’t hitting a place that spurred action. So I came up with something else that triggers me to put my needs in front. It feels powerful, accountable and my choice.

As a “seasoned” caregiver, there’s no silver bullet. It’s challenging and undeniably stressful. Building flexibility and self-compassion into my life is how I’m trying to manage the unexpected. It’s the dig-deep commitment and choice I have made – and continue to make – that carries me through the tough days. No matter how many self-care tips I come across, I am the only one that knows what I need to refuel my mind, body, and spirit. My job is to recognize it and take action so that my Crankasaurus visits less often. 

How do you tame the Crankasaurus?

 

Other Good Reads:

An ER Visit and the Treatment Toolbox

5:00am: I woke up to tiny groans. Jeff had his fourth round of chemotherapy Wednesday – Friday, so we decided to stay at SCCA House on Thursday. We thought it best to avoid the late night, hour+ drive home and “gift” ourselves time in the morning to relax and rest before Friday infusion.

Jeff was having a bad reaction to the chemo drugs (Cisplatin and Etoposide). His face was bright red, swollen and accompanied by a crushing jaw and headache. Jeff has a high pain threshold so when he told me the pain was an 8, we both knew we needed to take action.

I went into our overnight pack and realized…we forgot the thermometer. It’s one of the most important items to have on hand when someone is going through cancer treatment.

inside voice: I…can’t…believe…I…forgot…it.

Fever and chills can signal a possible infection. A cancer patient is super vulnerable to infection during chemo, radiation, immunotherapy or when blood counts are low. Whereas healthy individuals pop a Tylenol, cancer patients must connect with a doctor prior to taking steps to bringing down a fever. Redness or swelling of the skin, cold symptoms, back pain, toothache – all important signs to watch for possible infection.

I grabbed my phone and found a drug store a few miles away. It opened in 30 minutes.

6:00am: I explored the aisles of Bartell Drugs seeking a thermometer, Benadryl (you never know) and Gatorade (because you can never have enough on hand).

6:30am: No fever. Phew!

6:45am: Called the doctor.  They recommended we head to the ER for testing.

Damn you cancer!

7:15am: We threw on clothes and I packed up. So long SCCA House.

8:00am: Arrive at the ER.

Anyone who has been to the ER knows the overall experience is challenging. Despite the extended visit, the care was thorough and compassionate. Most appreciated when navigating the complexities of cancer and how treatment affects each person individually.

1:30pm: Leave the ER.

Net-Net is that they 100% aren’t sure what caused the reaction. After IV hydration, 3 different pain meds, nausea meds, steroids and 3 dates with the vomit bags, we were on our way home with 3 new prescriptions to fill and add to the 20-pill daily intake.

Today, he’s sleeping (normal for 4-5 days post-chemo). The swelling and redness seem to be almost gone. Our attention now shifts to hydration and nutrition.

The Birth of the “Traveling Treatment” Toolbox

During the down time in the ER (aka waiting), I designed a Treatment Toolbox. It doesn’t replace the various bags we pack for treatment days. This toolbox can be kept in the car for easy access to key supplies used regularly during treatment and doctor appointments.

BONUS for CAREGIVERS: This toolkit will reduce early morning and late night trips to drugstores and it’s especially handy when treatment is miles away from home.

 

The Treatment Toolbox Includes:

  • Portable urinal or bedpan (ask the nurse for a few)
    • Toss in an empty Gatorade bottle for a 1-time use. It works in a pinch.
  • Vomit bags (available in every hospital room)
  • Thermometer.
  • Thermometer probe covers
  • Stop Nausea stick by Inhalation Products (they work)
  • Gloves (powder free, disposable)
  • (2) Towels
  • Bottles of Gatorade (G2) or Powerade Zero (replenish electrolytes)
  • Protein bars
  • Nuts or trail mix (or any other snack you enjoy)
  • (2) cans of chicken soup or broth with pull top (lifesaver to 2 reasons: 1) if an impromptu late night visit is in order and 2) broth is great for hydration and typically the stomach can accept it)
  • (2) spoons and bowls
  • (2) pairs of clean underwear (for patient and caregiver)
  • (2) pairs of adult disposable underwear (Depends for Men; Depends for Women)
  • Catheter supplies (as appropriate)
  • (2) shirts (for patient and caregiver)
  • Travel-size toiletries
    • Deodorant
    • Soap / body wash (hotel options are usually drying)
    • Toothbrush and toothpaste (biotene helps to prevent mouth sores)
    • Fragrance free lotion (cancer centers are fragrance-free zones)
  • (2) resealable gallon-size bags + (3) sandwich-size bags
  • Hat or Head scarf (cancer patients are notoriously cold)
  • Fleece blanket
  • Refillable water bottle
  • Plush toy (I see more adults during treatments have a stuffed bear or other animal next to them. Hospitals state that stuffed toys soothe adults, especially elderly adults. It provides a distraction, helps with loneliness and is another small act of compassion)

++Some of these supplies are specific to those with prostate cancer or other genitourinary cancers. Modify the supplies in the toolbox so they work for you and your loved one.

Storage Options

I recommend an air-tight storage container that can be placed in the car – either back seat floor, cargo or trunk and can be easily moved into the house, garage or hotel room. Please use discretion when storing the toolbox in the trunk if you live in warm climates as some supplies may not hold up to high temperatures over an extended period of time. Always check expiration dates on food items and similar to a first aid kit – regularly check to make sure supplies are replenished after use.

 

Treatment Toolbox Supplies
Treatment Toolbox Supplies

 

 

 

 

 

 

 

Ready for Travel!

Do you know someone touched by cancer? Make a Treatment Toolbox for their vehicle. It will save loads of time and minimize stress when unexpected challenge arise – which they do – often.

What’s missing from the Toolbox? Share your ideas!

 

 

Note: I am not being paid to recommend products.  These are products we have found to be helpful.

The Y in the Road

The Y in the Road

Today is my parents 48th wedding anniversary. What a remarkable day to celebrate this special, and (frankly) uncommon milestone. Only they know all of the memories they’ve created over the last 48 years together. In sickness and in health, good times and bad, annoying habits and all. I am filled with love, admiration and respect for what they have created and I am grateful they are healthy, happy and continue to support and love each other. There’s so much to learn from relationships that have endured years together.

Today is also a pivotal day for Jeff and I. As I sign their anniversary card, I find myself feeling the tension between fear and hope. Today, we get the latest scan results. We’ve been through this several times – actually, every 3-4 months. We head to the hospital, meet with the oncologist and learn whether the current treatment is working. If it’s working, we continue. If it’s not, we switch to something else. I’ve been intentionally upping my FQ (fun quotient) and gratitude exercises the last few days to ward off the worry. Yoga, movies, playtime with the dogs have been great tools. And, it’s also helped that I’m in the middle of final exams which keeps my mind focused (most of the time).

Today, we greet the Y in the road.

When Jeff was diagnosed, the oncologist created with us, a roadmap of viable treatment options that outline levels of toxicity and impact on quality of life. We’ve been using that sheet of paper over the last 2 years, evaluating and selecting the best option, including clinical trials, based on scan results.

We’ve reached the end of that roadmap. 

And, herein lies the tension between fear and hope.

Will we walk out of the oncologist and head into chemotherapy for the next 3 days?

Or – will we go back home to start a different set of discussions.

To be continued…

Courage -SecondhandCancer

How I lost it in a sea of lanyards.

Last Friday, I found myself standing in the middle of a Seattle sidewalk, swimming in a sea of lanyards and I started to cry.

Hundreds of employees from the surrounding tech companies were breaking for lunch and bombarding the streets to hit their favorite eats. I watched these employees buzz by me with their prepared salads and curry bowls. At every bistro and coffee bar, there were long lines out the doors. I overheard a bit of shoptalk around the future of customer experience. I smiled. When we moved to Gig Harbor, I knew there would be times I would miss this energy yet our dream to create an intentional career shift and more simple life carried far greater benefits. What I didn’t expect was how incredibly out of sorts I felt in that very moment.

Literally, two streets over, was SCCA house, a temporary living stop for those going through cancer treatment. Jeff and I decided to stay there after chemotherapy that night. The place is filled with paperbacks, puzzles, a quiet room, and plenty of cancer literature. Instead of lanyards, this is the place of head scarves, ports and slow moving patients who seek a place of quiet rest. While a comfortable and well-designed space, one can’t escape the visions of illness throughout.

It’s hard to imagine a juxtaposition capturing so vividly the profound nature of what was and what is. Only 2 streets away, life looks – and is – drastically different.

In that very moment, the experience of walking between those two spaces, from the past to the present, was overwhelming.

I placed one foot in front of the other, walked intentionally through the sea of smartphones and stopped at a quiet corner. I stood there, took a deep breath, grabbed our bag of ‘chemo snacks’ and walked into SCCA house.

 

DelightfullyInsensitive

10 Things Not to Say to a Family Battling Cancer

Between the shock of receiving a cancer diagnosis and the sh*tshow of treatment, you begin to share the news with loved ones. Since Jeff and I have been through this rodeo twice (head and neck cancer, 2006 and prostate cancer, 2014) we’ve learned that most people want to know as much about the details as you’re comfortable sharing: What stage? What are the treatment options? What are next steps?

 

This is about the time you start to hear all sorts of cancer stories and advice. Most are helpful, hopeful and supportive. And then, there’s the comment that leaves you wondering why.

 

Most of these were said with the best of intentions (I hope). And, I know not everyone knows what to say when faced with scary news. My hope is that this might help others stop. think. and then respond with a more supportive option.

 

Here’s the tour of our top 10:

 

#10. “Well, if you’re going to get cancer, at least it’s not (insert type of) cancer. I hear that type of cancer is really deadly.” 

All cancers are capable of killing.

 

#9. “My (grandpa, uncle, etc.) died of cancer – it was really horrible. At the end, he was all bones and was in so much pain.  It was just awful.” 

 

#8. “I know what you mean. My neighbor’s son was just diagnosed with bone cancer and he’s 30 years old. Can you believe that? I mean that’s so young. I feel so bad for him.”

 

#7. “So, now that treatment is done, you guys can move on and forget this ever happened, right?”

No. And especially no when someone is battling metastatic disease.

 

#6. “Please call me and let me know how I can help” 

To help a family battling cancer don’t wait for the phone to ring. Pick it up and put it out there. And keep calling. I promise it makes a big difference.

 

#5: “I don’t know how you guys are getting through all of this. It’s just so horrible.” 

 

#4: “I hope things go well for you both with your cancer journey.” 

Yeah, it’s a journey alright. Want to hop on for the ride?

 

#3: “Stay positive and focus on fighting” 

Usually said in passing or at the end of a conversation. This is our favorite.

 

#2: “Be strong” 

I promise you, we’re fighting to stay alive.

 

#1: How long before you’re cured? 

Metastatic disease is not curable.

 

For more tips, check out: 5 Ways to Bring Relief to a Family Battling Cancer