Category: cancer caregiver

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cancer caregiver caregiver education caregiver strategy caregiver stress caregiver support carer support grocery shopping time constraints

Grocery Pick-Up Is a Desperate Caregiver’s Best Option

There I was, bringing my dad home from the hospital. Long hours by his bedside. Little free time. No food in the house.

What’s a desperate caregiver to do?

Order groceries online. Oh, what a godsend!

I was nervous at first, mostly because I normally do my buying at another grocery chain. I like to clip coupons. I know the products and the aisles.

But I had no way to slip away for the hour or more I needed to shop at my favorite store. Rats. My envelope of coupons would go to waste.

Still, I needed to feed my dad…and me. I needed staples like toilet paper.

Other times, I have used a delivery service (Peapod) to bring the groceries to me. But to tell the truth, it’s not always convenient. The driver could show up when I am doing a caregiver task for my dad.

And then I remembered that Peapod also offers curbside pick-up. For just $2.95, someone would actually schlepp the aisles and gather all the groceries on my list, pack them into paper bags, and deliver them to my car at a time I could select for myself. Seriously…$2.95? That’s a small price to pay for keeping my sanity.

The downside? It took a really long time to master the online ordering process. Waiting for products to load from the weekly sales or from a department took too long. I finally got the hang of using my shopping list to select products, thus limiting the number of items I was offered. It helps, if you have preferred brands, to add them to the search.

And yes, I did shop for sales items, but only if they were products I planned to buy anyway. I learned this lesson the hard way. My first order took almost three hours to do because I scrolled through too many products. Going in with a plan and sticking to it is a busy caregiver’s best option. It’s the fastest way through the process.

So, the next time you find yourself strapped for time, low on extra energy, or just not in the mood to drag yourself to the grocery store, consider doing a pick-up run to a local store. For a very reasonable fee, you will save your sanity and free up some time to do something that really needs doing.

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cancer cancer caregiver metastatic cancer socialization

When the Ghost of Cancer Interferes with Ordinary Pleasures

It happens so often for people with cancer. A remission ends and the cancer returns. Sometimes it spreads to other organs; sometimes it is easily contained. But the truth is that any patient who finds a return of the disease is going to feel crushed by the reality. That’s a pretty devastating concept to wrap one’s head around.

But what happens when people who thought your loved one’s cancer had been successfully treated realize it’s back? How do they react and what impact does that have on your loved one?

It starts with the looks of pity. Maybe the hair falls out again when chemo starts up. Maybe there are visible radiation burns. Maybe it’s impossible to miss the surgical scars. People are shocked. Some are horrified. Some want to know what the prognosis is. Is your loved one going to live or not?

It’s followed by disappointment. Or horror stories of what other cancer patients have been through. Or awkward silence. Or blame, as if cancer patients somehow did something wrong to get the disease.

The truth is many people don’t know how to deal with someone else’s disease. My mom once had a friend tell her, without any sugar coating of it, that she just couldn’t handle people being sick. Given the fact that my mom was struggling with lung cancer and a host of other health challenges at the time, having a friend so bluntly reject her was incredibly hurtful.

And I’ve seen other relatives and friends have similar experiences throughout the succeeding years. I even recently heard a dear friend remark about how hard it is to go out in public, now that her cancer is back. This isn’t a case of an overactive imagination. Your loved one isn’t being overly sensitive. He or she is picking up on other people’s very real discomfort.

As a caregiver, it’s important to understand two things:

1. Your loved one will be seriously affected by the public reaction to his or her cancer. It will cause any number of reactions — anger, annoyance, frustration, sadness, depression, disappointment, or even dismay. Whatever the reaction, it will take its toll on your loved one’s psyche.

2. You cannot change human behavior with a wave of your hand, and you certainly can’t force people to behave appropriately around your loved one. There will be loving and supportive people amidst the bumbling idiots and thoughtless jerks, but it still hurts your loved one to be segregated by cancer.

What can you, as a cancer caregiver, do to help your loved one through the difficult challenges of treating a returning or spreading cancer? Take action. Know your loved one’s interests and find ways to adapt social opportunities to meet his or her cancer needs. It’s still important for cancer patients to get out and be a part of life, but realize that some situations are just too emotionally overwhelming at times. Be proactive in planning adventures.

If the local coffee shop is no longer the welcoming place where everyone knows your name, it’s time to go exploring. Plan trips to new places, to places where people don’t know you or your loved one. Go to a museum, even if you have to push your loved one in a wheelchair. Take a boat trip down a river. Find a charming new coffee shop in another town and make the trip part of the adventure. Discover a new café that serves Sunday brunch. Go to a park where you and your loved one can sit and enjoy the birds singing while you eat a picnic lunch. Go to the movies when the theater isn’t crowded. Take a stroll on a quiet stretch of beach. Go to the aquarium (which is usually dark and has plenty of observation benches) and sit for a while to watch the fish swim.

Whatever you do, don’t let this kind of thing determine what your loved one can and can’t do. Don’t let other people’s inability to cope with your loved one’s cancer deter you both from activities you enjoy together. Help your loved one continue to be a part of life, because tomorrow is promised to no one. Until that fat lady sings, keep your loved one focused on pleasure and joy by managing the environment. Keep hope alive.

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advanced breast cancer cancer caregiver cancer management cancer survivor

Why Keeping Hope Alive Is Critical

These days, with more advances in cancer treatments, survival rates have improved. But there is often a price to pay. Side effects can be brutal. Complications can be devastating.

Cancer attacks more than just the human body. It crushes the human spirit. The most confident person can be devastated by the loss of hope.

Doctors and nurses often treat the cancer patient’s body, but not necessarily the mind. And yet, the mind is one of the greatest tools available in cancer management. How a patient perceives his or her cancer really does matter.

If a patient feels there is nothing to gain from treatment, it’s unlikely that he or she will bother to:

— Take medications appropriately
— Eat as healthy as possible under the circumstances
— Get enough rest
— Avoid unnecessary risks to the immune system

Cancer is stressful. And when that stress builds up and becomes overwhelming, patients often surrender to the sense that it’s futile to even try. It’s easy to throw in the towel when you are in pain and unable to handle all of the horrible side effects. Patients often presume it’s all about the cancer. But sometimes that can be a mistake.

There are so many issues that can crop up in advanced cancer management, when the options are fewer and the regimen is rougher. If a patient is undergoing chemotherapy on an ongoing basis, dehydration, infection, neuropathy, and steroids are just some of the complications that can wreak havoc with the human body. After a while, it’s hard to tell whether it’s the cancer causing the problem or the treatment.

If a patient loses hope and gives up, the battle is over. People who are pessimistic about their chances won’t bother to look for solutions. They won’t tell their oncologists about new symptoms because they don’t want to know their cancer has advanced. But what if it isn’t the cancer?

What if the side effects are manageable with the right diagnosis? What if there are options if the oncologist recognizes what is really causing the problem?

I remember sitting in an oncologist’s office with a loved one who had just been given the prognosis about cancer. How many people survived this kind of cancer? What were the chances she could come out on the winning side of the equation? The doctor’s response was simple. While many people didn’t survive it, there were people who did. Why couldn’t she be one of the people who survived it?

That little sliver of hope at the right moment in time made a difference. She lived much longer than the majority of patients with the same diagnosis. We learned to manage the symptoms, to address them as they came up, to focus on comfort in order to maximize quality of life. Cancer patients need to feel they still have a reason to get up in the morning. They need to believe there is something worth doing. They need to believe they still have a chance to grab the brass ring.

I have been blessed over the last couple of years in unusual ways. I lost two family members to cancers that were aggressive. But as I grieved, a friend of mine beat the odds, and in doing so, she taught me that hope is a critical component of any good cancer management program. After such a struggle with pain and debilitating side effects, she is still here. She teaches me what courage, fortitude, and perseverance are all about. And above all, she has shown me that we should never turn our backs on hope. Because she believed, she searched for answers. She stayed on top on the issues. She fought for what she needed. She is the new advanced cancer survivor, using cutting edge treatments that have kept her alive against all odds. It hasn’t been easy. This isn’t some kind of cake walk for her. She fought tooth and nail to keep going. She believes that she still has something to achieve on this planet, so she finds a way to get it done. We’ve come to understand the power of love, faith, and hope in this life touched by cancer. Cancer didn’t make her a superhero. Her reaction to cancer did that. And because she did the hard work, we are inspired. We have learned that hope matters in everything we do. Love connects us. She’s told us so many times that our being there for her banishes the loneliness and isolation that cancer creates. Hope pushes us to try harder to help her, to lift her over the obstacles that stand in her way. It feeds our faith that there is something good for her on the other side of that wall.

This is how new cancer treatments come to bear fruit. Those extraordinary people who endure against all odds teach cancer specialists that those baby steps forward can become giant steps. It’s not enough to have strong medicines or powerful machines to attack cancer cells. Hope is the elixir for the soul and it opens the door to even the smallest little bit of opportunity. It is what creates quality of life for those survivors who believe they have a chance. And because they believe, more and more people are surviving what was once not survivable. Someday, cancer will be a thing of the past. Who’s to say my friend won’t be there to march in that parade?

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cancer caregiver cancer management caregiver education

Caregiver Strategies for Continuous Cancer Management



“Cancer police! Freeze, sucker!”….Imagine finding out that your late-stage cancer has been chased down throughout your body by your cancer team and stopped. With its hands in the air and no place to go, the disease that has ravished your body and soul just stands there like a surly, unrepentant career criminal, contained for the moment and hopefully going away for a long stretch in a maximum security prison. What happens now?
 
In real life, a criminal investigation is followed by a trial, with prosecutors and defense attorneys arguing back and forth, presenting motion after motion, deposition after deposition, and witness after witness. There are forensics, surveillance videos, and phone records introduced as evidence. Some cases can drag on for years before they get to trial and the judge hands down some semblance of justice. Victims can feel victimized over and over again by these brutal and unfair circumstances and often face the prospect of living with that terror on an ongoing basis, never knowing what dangers lurk in the shadows.

Most cancer patients get treatment that either works or doesn’t. Doctors make their decisions based on what’s going on in the body at that moment in time. Standard protocols are carefully monitored. Everything is based on what has been learned through clinical studies. There are patient scans and tests to determine the extent of the damage caused by cancer. Doctors will argue for or against this treatment or that one, often with contradictory opinions.

But new research that arrests cancer in its tracks is churning out a new kind of cancer patient who needs ongoing treatment to maintain the status quo. You’re no closer to a cure, but you’re also no closer to death — you’re in limbo as the ongoing treatment process continues to hold cancer at bay. It’s like serving some kind of twisted “life sentence without parole” for the person most affected by the disease.


How does this work? What if the doctors told you that you could continue living, but only if you stay on a harsh chemotherapy regimen for the rest of your life? Instead of a set number of chemo rounds, followed by months of recovery time, you’re told you will now going to have ongoing treatment every month. Expect to deal with significant side effects with every dose of chemo. How do you cope as a cancer patient and find peace in the face of such a cruel reality, especially when you know there will be no reprieve any time soon? And how does your caregiver give you the kind of care and support you need to get through that rigorous routine? 

I first came across this dilemma more than five years ago, when I met a Stage IV stomach cancer patient, who talked about the rigors of his cancer survival plan. Every day, for the rest of his life, he would have to face the side effects of a very powerful drug that left him with balance issues, muscle weakness, nausea, and other unpleasant hurdles to leap over on an ongoing basis. Every night, right after dinner, he would take his medication and hit the sack, totally wiped out. This once-vital man still took vacations with his wife, still tried to work part-time, but it was a genuine struggle just to maintain that status quo and get through the day with continuous cancer treatment. His wife was his dedicated caregiver. It was easy to see just how committed they were to each other. He had once saved her life after a horrific car accident; now she was returning the favor. What was their secret for success? They consciously accepted the harsh realities of the treatment he faced and together they conscientiously worked their way through the problems, one issue at a time, making adaptations as needed.
Since then, I’ve had conversations with other cancer patients in similar straits because I want to know how we cancer caregivers can improve the care we provide. We need to understand the pitfalls and benefits of ongoing cancer treatment, what it does to the quality of life for those we love, and how it affects daily life for those directly impacted by it.
Now, thanks to cutting edge research, some cancer patients are finding out that having an incurable cancer is no longer a certain death sentence. In some instances, the disease can be contained, but that option comes at a great personal cost. There will be ups and downs during continuous cancer treatment. Just as one round ends, another will begin; when that one ends, another will follow. That means no break from the grueling side effects, no time off for “good behavior”. It takes a tremendous amount of courage to decide to proceed forward with that kind of treatment plan.
We caregivers need to mitigate as many of the debilitating aspects of this as possible, so that our loved ones can continue to achieve their goals, follow their dreams, and be involved in the activities that make them feel whole. We want them to have enough quality of life so that they feel satisfaction in their lives and they are able to cope. We must work to tamp down the negative outcomes and boost the positive outcomes.
I’m convinced this calls upon us to become a new breed of proactive caregivers — wiser helpers who provide more effective support for patients whose treatments are continuously evolving. Good cancer caregivers understand that there are some necessities we must provide to our loved ones if we are to be successful. These include:
Comfort for the physical and psychological pain — 
When we know what is causing the greatest distress to our loved ones, we can better reach out to the cancer team to identify the solutions and apply them quicker, whether it’s palliative care for pain, better nutrition options that make food more palatable and digestible, or adaptive tools to overcome physical and mental limitations that interfere with the normal activities our loved ones want to take on

Companionship that continually nurtures the soul —
When our loved ones constantly need help from us in order to function physically, we caregivers give it; it’s important to recognize that this creates a serious imbalance in our non-cancer relationship and we need to periodically return to that on good days, to embrace the essence of our “old” selves again, to laugh and have fun together like in “the old days”, throughout the caregiving process
Compassion for all the frustrations, worries, anger, and sadness that get in the way of living a normal life with continuous cancer management — 
When we know what hinders our loved ones the most, we can seek ways to overcome these challenges in meaningful ways that empower our loved ones again and again, by tapping into the hidden strengths and minimizing the weaknesses that get in the way of success; in this way, we empower our loved ones to experience moments of satisfaction that are born of their hard-fought determination to succeed despite the obstacles that stand in their way
Commitment to making this partnership work for patient and caregiver —
As we focus on the role we play as facilitators, we recognize our responsibility to do what our loved ones need done and we don’t take charge of the disease; we consciously put control back in the hands of the people who most need it — the cancer patients who have been thwarted in their efforts to live their lives as they so choose; at the same time, we must also recognize our own need to stay healthy and active, so that we can function as effective help mates
I’ve talked about the four stages of care on my website, The Practical Caregiver Guides. They are:

Temporary
Serial
Progressive
Permanent


Learn more here: Four Types of Care

Many cancer patients need temporary caregiving, especially when the cancer or the treatment side effects hamper normal activities, but once that’s over, so is the need for a cancer caregiver.
Some patients need serial caregiving over time, especially when the cancer recurs or metastasizes. The caregiver steps in to help when a loved one is struggling, but when things are good, the caregiver steps back, with the understanding that there may be a need again in the future.
Some, especially people with late-stage cancers, need progressive caregiving. They know they are likely to continue to lose function because the disease is gaining on them. Eventually, they will enter a hospice program, for end-of-life care.
But what comes between serial and progressive care, when a loved one’s cancer is still present, but managed with continuous treatment? Your loved one will be repeatedly going through the same cycles of treatment and side effects over and over again, without being able to go off the medications. As harsh as this will be on the body, it will be even tougher on the psyche. Life has to be “good enough” to endure the hardships. It becomes more important than ever for the cancer patient to feel invested in his or her life, to able to achieve personal goals, make dreams come true, and experience a sense of satisfaction and fulfillment.
The biggest challenge for a cancer patient and caregiver over time is likely to be the cumulative effect of the rigorous, never-ending treatment on daily life. It will be important to stay focused on the positive and find ways to remain aware of what is working, in order to help your loved one face a future of living in limbo. The better you understand the physical, psychological, and personal aspects of this situation, the more likely you will be to attend to issues as soon as they creep into the picture. Being proactive means understanding as much about your loved one’s cancer as possible.
What are the side effects of the particular treatment your loved one must undergo to keep the cancer in check?
If you knew that once a month, you would have to indure a horrible week in order to have two or three good weeks, would you be confident that you could get through it over the next month, the next year, or the next decade? When you’re facing a cancer diagnosis that includes rounds of chemo, radiation, and even some surgery, you are likely to talk yourself into getting through the treatment because you expect a positive outcome when it’s all over. But for cancer patients who have a “life sentence without parole”, there is no real light at the end of the tunnel, no pot of gold on the other end of the rainbow. It’s important that we, as caregivers, we recognize the real hardship of this kind of life, and it’s vital that we find ways to help our loved ones achieve as much quality of life as they can under the circumstances.
What are the actual cycles of these side effects and how can you help to alleviate the brunt of the rigorous treatment?
As overwhelming as it is for our loved ones to contemplate a seemingly endless life of ongoing cancer treatment, our efforts to recognize their worries and find meaningful solutions not only provide comfort, both physical and emotional, but also keep us focused on seeking answers. Sometimes a little medical information can make a difference. What if your loved one is not hydrating as much as the body needs? That’s likely to make chemotherapy more difficult to endure. What if your loved one isn’t able to eat? Working with a palliative physician to control physical symptoms and a cancer nutritionist to tweak food choices can make a huge difference.
But what if your loved one is terrified about the future and is convinced that continuous treatment is a losing proposition? By recognizing the emotional chaos and sorrow that this kind of diagnosis brings to a cancer patient, you are more likely to find ways to help your loved one remain engaged in the effort. Patients who feel satisfaction with what what they are doing will feel life is worth living. Patients who don’t have that are more likely to quit.
How big a factor does guilt play in your loved one’s cancer experience?

Believe it or not, cancer patients often feel guilty that they need the help of caregivers. They can often convince themselves that we are wasting our time, our energy, and our talents on caring for them. When guilt interferes with our efforts to assist, our loved ones will sometimes withdraw, believing that they must do things for themselves, even when they don’t have the strength or stamina to do that. How can we help them to let go of their anxieties? We can share our honest thoughts and feelings.
There are times that caregiving becomes difficult for us — that’s a given. But for those of us committed to the process, we want to be there for our loved ones. That’s why we need to find our own support system, one that will continually help to recharge our batteries and to empower us in our responsibilities. If your loved one feels guilty that you are spending too much time providing care, those feelings are likely to resolve if he or she sees that you are still achieving your own goals and finding satisfaction in your own activities.
What can you do to live as healthy and active a life while your loved one undergoes this treatment?
Tired and frazzled caregivers can actually pile stress onto overwhelmed cancer patients. By taking responsibility for our own limitations, be they time constraints or too many responsibilities, and for our attitudes, which can negatively affect the people who need our help, we are forced to look for better resources. Sometimes it means we have to reorder our priorities and let go of things on our “to do” lists that just aren’t that important. And sometimes it means we must really go deep and analyze the way we are providing care to our loved ones, so that we can better meet his or her REAL needs.
How can you help yourself to understand how your loved one’s cancer impacts the quality of life for him or her?
With an eye towards making things work better, you can ask yourself what your observations are about your loved one under the circumstances. Believe it or not, a lot of cancer patients are proud of their own efforts to get through difficult experiences without breaking. Just as an experienced marathon runner takes the race in stride, sweating out the hill climbing and breathing a sigh of relief on the downhill descents, cancer patients can and should recognize just how amazing they really are in times of trouble. Don’t be afraid to praise real efforts your loved one makes. Don’t be afraid to admit that you are in awe of your loved one’s determination to live life out loud!
You can find more help for cancer caregiving at The Practical Caregiver Guides

 

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cancer cancer caregiver community support

Dogs, Cancer, and Caregiving

 

It was just happenstance. I set out to put together a bibliography for readers of cozy mysteries (think Agatha Christie) that feature dogs. I did my research over two days’ time, searching various sources to come up with a respectable list of canine characters in fiction. Once I had all my information in order, I posted it to my cozy mystery library site. And that’s when it happened. Someone threw me a curve ball.

It came in the form of a request from an author of dog mysteries. She wanted me to include Susan J. Kroupa’s Doodlebugged Mysteries on my bibliography. It sounded great until I checked out the books and saw they were listed as kiddie lit. I was doing an adult bibliography. How could I diplomatically navigate this conundrum without offending anyone? I decided my best bet was to do some research. Maybe I could start a “junior cozy mystery” list. Or I could come up with a respectful reason why I couldn’t include it. I had to try to find a reasonable solution.

The funny thing was that I found a lot of adults loved the series and thought the books were well-written and amusing, with enough adult elements to make them work as cozies. They also thought the books were fun to share with kids and grandkids. But what does this have to do with cancer?

My research wasn’t done yet. In addition to providing a list of books, I also like to help readers connect to authors whose books they may enjoy reading. That meant I had to find Susan’s website. I flipped through a couple of her pages, looking at her books and bio. We had some things in common. We were both librarians at one point in our lives. We’re writers, nature lovers, and dog fanatics. Then I clicked on her blog. And that’s when I found it:

What Love Looks Like — Susan J. Kroupa

I saw that photograph of her daughter, Sarah, holding a baby. Sweet-faced. Mother of five. Colon cancer stole her away just before Christmas.

My heart sank because it’s a story I know too well. I still remember Michelle and her extraordinary battle to defeat the monster that is colon cancer. I still remember my amazing cancer friend’s effort to pour as much living into her last year of life as was humanly possible. There were so many trips, so many photographs, so many things Michelle did with her family to remind them of her unending love before she left them. Here was another young mother with another amazing family.

But when Susan wrote about her daughter’s battle with cancer and eventual death, she didn’t write about the sorrow. She wrote about the love that their community shared with the whole family. She wrote about how people came together to support them in ways that I wish every cancer family could have. It’s a wonderful testament to what we can and should do for those in our circles who are in need.

So I am sharing Susan’s link with you now, not because she wrote extensively about what to do and how to do it, but because she managed, in a very short piece, to capture the spirit of generosity that really is the face of love. This is real giving at the heart level. People got it right at the right time. They stepped up to the plate. If we could bottle this and sell it, it would be a tonic that could soothe the most discomforted soul. It will never take away the pain of losing a daughter so young, but it obviously made a difficult and challenging time less so. This is inspiration for every cancer family. Don’t give up, reach out. Ask for the right kind of help for your family, for yourself. Know what you can and can’t do realistically and don’t be afraid to say you need more help. Susan can tell you what happens when you recognize that need and people respond.

You never really know what lies beneath the cover of a book until you open it and read. Everyone has a story. I’m glad I was curious enough to learn more about an author and I’m glad to share this with you. Maybe someone else’s life will be made better by the story of Susan’s daughter because readers like you will see the possibilities and act. Don’t be afraid to be the love.

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breast cancer cancer caregiver cancer survivor

What Does a Cancer Diagnosis Feel Like?

I have a very special post to share with cancer patients and their loved ones. The raw emotions and roller coaster ride of a newly diagnosed cancer patient is rarely demonstrated as well as it is here.

I opened an email from a hospice friend not long ago, someone I hadn’t corresponded with in a while, and got the shock of my life. But it was nothing compared to what she was going through.

Long after I read her letter, her words stayed with me. I couldn’t shake them. My first thought was to contact her and tell her how much she is in my thoughts, my prayers. But my second? I wanted to give her a chance to share her story, not only to give her a voice as a cancer patient, but also because I believe other people out there will benefit from her experience.

Before you read on, let me tell you that I have already heard further from her. Melody Webster’s sense of humor and determination to rise above are still strong. I asked her if she would consider checking back in, during treatment and after. She is very interested in doing that, so expect to hear from her again on my blog. And now, here is what she wrote:

I Have to Get This Off My Chest — Letter from Melody Webster

I found it necessary to write this so that years from now I could recall how I felt when I was faced with hearing I could have a very serious illness. I have worked in Hospice for some time now and meet many families that are faced with the reality of having a life threatening disease. Always thinking I knew how they were feeling and what they were going through couldnʼt have been any further from the truth. I am lucky, I only had to prepare to hear the worst, these families are living the reality of knowing their final outcome.

My heart goes out to all of them……..

We see our bodies every day. We notice every new line and wrinkle on our faces as we brush our teeth and put our makeup on. We see more and more grey hair as some of us try to hide them with color. We see the little new dimple of fat that may appears on our thighs. We touch the little pouch of stomach that may have appeared on our tummies. Some of us pull the falling face up towards our ears and think wow I could looks 10 years younger by having a little tuck behind my ears. We brush our teeth with whitening hoping to have the great smile we did when we went to the prom. We wear push up bras or athletic bras hoping to get a little perkiness in our girls.

Have you looked at your boobies lately? Do they look the same as they always did? My boobies started to look different over a year or so ago. Both my nipples were smashed in when I took my supportive bras off at the end of the day. I encouraged them to come out by pulling and twisting them. My thought was they were just a little tired of the effort to look young and smug. I thought that like everything else on my body they were loosing their elasticity and just wanted to take a break. No more having to put my arms in front of my chest when picking up a pizza in the frozen food section. Those little nipples kept themselves warm and snug by taking shelter in the comfort of my now bouncy, drooping boobs. I succumbed to the fact that my body wasn’t what it used to be and some things cannot be changed without a huge bankroll given to a plastic surgeon. I decided then that I loved my husband; he loved me no matter what I look like as long as I always applied a little lipstick before we went to the store together.

I paid attention to my yearly blood work that always came back good, not perfect but “great for a woman of my age”. I kept up with my yearly mammograms. Asked the tech if she had seen many women with a shy nipple and she assured me she has seen many. Believed it was again just a normal sign of AGING. I forgot to mention that my nipples were like tortoises. One always finally came out of its shell the other one remained hiding inside refusing to come out even when coaxed by manipulations Iʼm not going to mention.. The refusal of this stubborn nipple caused me a lot of anguish. I thought I had more control over my body parts, maybe not my bladder but other parts.

I spent many hours on the Internet searching for shy nipple syndrome. Everything that came up was very frightening….REALLY! Everything from Inflammatory Breast Disease, all sorts of other breast cancers, the list went on and on. Nipples that had never shown their smiley faces were ok but ones that started hiding later in life were a REAL warning sign that something isn’t right. I became obsessed with this nipple. I asked practically everyone I didn’t know if they had one. I was too embarrassed to ask people I know about my shy nipple for fear they would think I’m crazy.

Finally it got to the point that after every search on the internet I would clear my browsing history…. didnʼt want anyone to know that I was obsessed by this, especially since everyone was telling me that this was perfectly normal.

One day I told myself there is more to life than worrying about a shy nipple…..take action and resolve it now! Get the answers to all the questions so you can return to a normal life. I even considered having this nipple decorated with some sort of nipple ring to keep it out in the open.

I finally decided to take the bull by the horns or in this case take the nipple by the very small tip showing and demand someone explore fully why this baby wouldn’t stay out. I made an appointment with my primary care doctor. She looked at all my past mammograms and confirmed that they were all negative. Upon her doing a breast exam she notice that the breast with the shy nipple felt really dense and it was hard for her to determine if there were any significant lumps or abnormalities. She said since I had been worrying about this nipple thing it may be appropriate to have an MRI. Great I’m making progress even at the embarrassment of shy nipple. MRI scheduled….in a couple of days I would have some answers. Yeah!

Got a call from my doctor a few days after the MRI telling me they saw a couple of masses in my shy nipple breast along with an enlarged lymph node. Recommendation was to have a biopsy. Wow — reality hitting me.

Was I right all along that something very serious was going on and that my shy nipple was trying to catch the attention of everyone and no one way listening to the cry of help from this little precious piece of skin? Concerned about what this all meant I asked my doctor what the heck does this suggest. Her response was expect to hear the “C” word. Yikes is this really what I wanted to find out? Maybe I should go hide with my shy nipple. She went on to tell me that it was probably stage 3 cancer and that surgery, radiation and chemo were to be expected. “NO! ARE YOU KIDDING ME?” I thought. I asked her what about my shy nipple?

She said the nipple wasn’t involved as shown by the MRI.

She would set up the appointment with a breast surgeon so that it would save time. It would be right after the biopsies. I was really worried that maybe I had waited too long. Was I beyond early stage curable cancer? Had it spread to other areas? Was I so keyed into my vanity? Had I pulled the face skin back to my ears too many times to look ten years younger when I should have paid more attention to my shy nipple waving her arms as if saying throw me a life jacket I need help and I need it now! So many thoughts and not enough hours in the day to filter all the information.

I lost a couple of lbs over the past month or two in hopes of wearing a new bathing suite to the pool with my grandchildren this summer. OMG maybe I need those lbs. now because of all the surgery and treatment I’m going to have. My head is swirling. Iʼm too young for this. I need to take an Ativan to make it through the day and wine and Ativan to sleep only a few hours at night.

How will I make it over the next few days before the biopsy? My head is swimming with negativism. Everyone says to be positive for a good outcome. Positive…. Iʼm ready to pay the funeral director now in fear that I will spend our entire retirement fund at the casino to blot all this out. God please help me make it to the biopsy without having a heart attract or stroke………..

As many women before me have done I made it to the biopsy with fear in my heart and a sick feeling in my stomach. Its funny what fear can do to the body. All “systems go” if you know what I mean. When I woke up on the morning of the biopsy I felt pretty good. The couple glasses of wine and the melatonin before bed brought the rest I yearned for before my big day. I was fine till I walked through the door of the building that would inflict long needles in my breast. I squirmed just plucking one little hair I had noticed growing from my nipple in the past. Now several needles would be inserted deep and they told me I could even watch the whole procedure on the screen. Wow are you kidding me. I still remember the scene from Psycho in the shower. I never thought I would want to look at sharp objects going into a body again especially mine.

Well as it turns out there was very little discomfort from the needle that deadens the feeling in the breast but I thought since menopause I havenʼt had much feeling in that area anyway. Everyone at the cancer center was great. They must pay them a lot of money to create such a calm and peaceful setting. It was like a dream where you didnʼt want to wake up because everything and everybody was treating you so kind and so nurturing. I realized how selfish I was to think that I was the only one ever experiencing this. Itʼs not all about me I thought I am one of millions of women who have gone through this.

P.S. Infused some humor because that is how I handle life stresses.

Going home I felt numb not just in my boob but my whole body was in a state of shock. Things like this only happen to others. Then my mind starts thinking about all the families Iʼve met through hospice and I have just about given up hope for cure before the results even came back. At this point Iʼm just tired of ME. I think I went through all the stages of grief in the period of 2 weeks. I had to wait from Thursday till the next Tuesday to find out the results. Was it a piece of cake….not really it was several pieces of cake and a keg. My darling husband must have sent out an SOS to our relatives because my daughter-in-law and oldest granddaughter drove from Calif. to Sahuarita to spend Easter with us. Leaving the 3 other grandchildren and husband home alone on Easter. Wow did I feel the guilt. I was on my best behavior keeping all of my feelings to myself. Only by then there were hardly any feelings left.

I feel the guilt. I was on my best behavior keeping all of my feelings to myself. Only by then there were hardly any feelings left.

Then came the day of reckoning … like the jury had reached a decision and I was awaiting my sentence. I was totally amazed at how hearing that I did have a cancerous mass but it was slow growing and I would receive hormone treatment to shrink it before hopefully only a lumpectomy could raise my spirits.

All the prayers that friends said for me had been answered. I was afraid that God no longer listened to my prayers since I have used all of mine up at the casino praying for a royal flush.

Smack me in the face — I have had to come face to face with my mortality and it was a scary thing to do. I send my most deepest respect and admiration to those who have had to go through what I have experienced and did a much more honorable job of doing it than I did.

God bless all you women who have fought the cancer battle. I canʼt say Iʼve walked in your shoes — maybe just in your flip flops.

Love to all for your support.

That’s it for Melody’s letter. She’s begun treatment and is on her way as a cancer survivor. I’m looking forward to hearing about her progress, and when she shares her thoughts on the road to recovery, I will post them here. And again, Melody, thank you for having the courage and gumption to speak up, to speak out, and to share your experience. We’re grateful.

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cancer cancer caregiver cancer psychology caregiver education health psychology

Don’t Flee the Cancer Community! Embrace It!

Life isn’t fair. It never really was. Some people seem to live charmed lives, enjoying idyllic days and happily ever after. Others seem destined to live in chaotic times, with moments of heart-pounding terror, when everything seems to be up in the air, the outcome can go either way, and life becomes a game of chance. It can turn on a dime, when you least expect it, ruining the best laid plans.

Cancer is a terrible disease. Well, actually cancer is a label for several hundred different diseases that we call by this one name, but it’s still horrible. And the outcome, depending on the type and stage, can be positive or negative. If you think I’m talking solely in terms of life and death, black and white, you’re wrong. I’m talking about how we face cancer. Our reactions, our actions, even our inactions — they all define us. Cancer may choose among us, but how we choose to manage this disease can make all the difference in the world.

Each of us knows someone who died from cancer of one form or another. Each of us knows many survivors in varying stages. But we are human, and in that humanness, there is a tendency to want to flee the sick. Maybe it’s a survival thing. Maybe we just don’t want to be reminded of our own mortality. Inevitably, many cancer patients find their social circle growing smaller when their cancer grows larger, as friends and family sometimes turn away, unable to face the expected heartache of saying goodbye to someone presumed to be on the road to death.

Is it the bald head of chemotherapy and the pallor that makes one look like a prisoner from Auschwitz that we can’t stand to see? Maybe that’s part of it. Or is it that we can’t seem to bear the struggle of day-to-day living with cancer, the inability to eat, to walk, to function? What if that impression is wrong? What if, rather than seeing the worst of life, we might see some of the most glorious moments of human spirit and endurance? What if there’s another way to look at cancer patients that will help us to live better, more meaningful lives?

When we embrace the cancer community, it’s not all pink ribbons and “life is good”. We know that as surely as we know some people will not be cured and their lives will end too quickly, some people will manage their disease for a while and we will have those precious months and years to enjoy, and some people will survive the disease and eventually die of other causes. But when you or someone you love lives with cancer, the quality of that life becomes paramount, no matter how much time on this earth is left.

The pain of having cancer is never more apparent than at the holidays. This is the time of year we so love to celebrate, and when someone we love can’t find the energy to do normal things, it’s a tough reminder that magic doesn’t happen for everyone. This is the season of miracles and the sharp jab to our hearts might make us hesitate or turn away. But we should never turn away from a cancer patient or from the cancer community, especially at this time of year. Why? Because we might miss some of the most important lessons of spirit and courage and love.

I say this as I follow several long-distance friends with cancer. Some have found success this year. Remission is a glorious word, one we celebrated with great expectations for continued success. It makes us want to do the happy dance.

Others haven’t been as lucky. New tumors arrived with a ferocity that is both stunning and terrifying. Old treatments failed, new treatments failed, and we watched as friends fell into that black hole of uncertainty. Every time another person teeters on the edge of life, we ache, but we ache together. Every time a member of the cancer community dies, we die a little too, but we’re there for each other. There is strength in numbers.

Recently, I read a heart-wrenching message from one long-distance friend. Someone she cared about lost the battle and she raged against the unfairness of it all. She was angry. She was passionate. I took heart from her diatribe against cancer. I thought about the young woman who passed away and what she would have taken from this. To know that you matter, that you were someone special in the eyes of such an eloquent and fiery champion, who wouldn’t want that kind of friend? No one is ever really gone with so many wonderful people to insist on remembering.

But the most glorious lesson I’ve learned in recent months comes from a young mother who has faced some enormous obstacles in her cancer journey. She has young children who depend on her. She has a husband, parents, in-laws, siblings, other relatives, friends, and even strangers hanging on her every word. We follow the ups and downs of her cancer treatment with hands on our hearts and prayers on our lips. “Please let this go well for her.”

Cancer really is a soap opera of the heart. We never know when an infection might set in and spoil everything or some tiny miracle might be found as a tumor is pushed back. In some ways, living with cancer is the ultimate melodrama. Sometimes that’s where the human spirit makes the most progress, whether we want it or not, whether we’re ready for it or not.

During Christmas week, I followed the postings of this long-distance friend as she tried to pack as much fun into the holiday as she could, not for herself, but for her kids. “They deserve this,” she insisted, and she’s right. She reached out to her following, explaining what she wanted to do, asking for help to make it happen. People responded. It was more than just hopes and prayers. It was a community’s belief that good things can still happen, even when cancer knocks you on your fanny. That’s why it’s so important for cancer families to remain connected to the support circle at every stage of cancer treatment and management.

A mother really can fight tooth and nail for her kids, even as this disease continues to smack her to the ground. Why is that important? Because she still has power to change the world. Every time my long-distance friend stands up to get something for her kids, she’s stronger than the disease. Her body may not be able to support her at this moment in time. She may feel unable to do the very simple things in life. But there’s still a fighting spirit here who demands to be heard, who insists on succeeding. She is motivated by love to give her children what they most need, the very best of her, and in that effort, everyone wins.

Her children will carry these lessons with them through life. The tough times have shaped them in ways that other children will never know. Was it unfair? Absolutely. Was it painful? Without a doubt. But these children have the gift of love like no other children have it. Come what may, they will know that you keep fighting to do right by those you love. They will know that when the chips are down, you find ways to get around the obstacles. They will know that love matters, family matters, and you don’t walk away. That’s because they have an amazing mother. Cancer didn’t make her that way. She was amazing before cancer. But when the disease took hold of her body, she decided how she would live her life with cancer. She recognized that she had the power and she grabbed it, refusing to let go. Cancer would not defeat her, because her spirit was greater than a disease. And she was right. She is so much more than cancer. That is what we celebrate with her. That’s what we learn when we follow her journey. And that’s what we can apply in our own lives.

When we come together, when we share, we’re learning to help each other rise above the hardships, the brutality of cancer, to embrace what really matters and to leave behind those ordinary things that have no real value in the struggle of life over death. It’s the triumph of spirit over sorrow, of determination over despair. A cancer community really isn’t just about cancer or about living with cancer. It’s about surviving and thriving despite the cancer and about not letting cancer have the power to decide how you find the true joy in life. Fate may have brought cancer to your doorstep without your permission, but your destiny is still your own to make. Learn from the cancer community and choose wisely. Live life, love life, and love.

Wishing you all a Happy, Healthy New Year.

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cancer caregiver caregiver education

Cancer Taught Me Not to Sweat the Small Stuff

It’s been a tough couple of weeks for me. I was hit with some rather unsavory cyber stalking. My FB account’s been repeatedly manipulated by some creep with too much time on his hands and no conscience to speak of. Some strange woman has decided to launch a very nasty Internet rally of her like-minded friends because I don’t recognize her telepathic powers. (She’s decided I’m some kind of menace to humanity and she’s going to wage an epic battle to save the planet….) I’ve got bills to pay and things to do, but someone’s always stepping into my path as I try to get there. And today, I received news that my beloved cousin passed away. No more sweet letters. No more cards with that familiar handwriting. No “one last time” to say I love you. Life is so fragile at times, so unexpectedly fraught with ugly surprises and uncertainty.

Last night I started the preparations for Thanksgiving dinner, even as I tried to meet a publishing deadline for a holiday novella. I’m so far behind in my housekeeping, the Dust Bunnies have their own zip code. I decided that rather than try to squeeze all my work into one day, I would multi-task and do what I could in the time frame I had. I got my turkey ready (I know it sounds odd, but I’m not really expecting a huge crowd and I have a little trick I like to do with the bird, the stuffing, and some gravy). I cooked my carrots, made the glaze, and then got busy with the broccoli with cheddar sauce. I even prepared my potatoes. And I did it even though the microwave conked out on me. That’s right. My carousel popped a wheel. It’s the harried cook’s equivalent of a flat tire.

There was a time I probably would have thrown up my hands and walked away from the kitchen. I certainly did consider having a pity party for myself. After all, preparing the Thanksgiving meal is a lot of work for me and I have so many other things that need doing. But then my father mentioned my late mother and how she used to do Thanksgiving. His favorite thing? Helping her lift the big turkey out of the fridge, onto the counter, and then into the oven. We forget sometimes that it’s the little things that matter most, those tiny moments when we have a place in the world.

That’s part of why I cooked the turkey yesterday. I want my dad to be able to slice it with his carving set, to feel like he’s a part of the effort. He misses my mother, no more so than at the holidays. The idea of rushing him, of being tense and crazy as I try to put dinner on the table, made me want to shuck that nonsense and concentrate on what really matters.

My life as a cancer caregiver taught me to multitask in ways I never thought possible, to focus on what has to get done and forget about what isn’t really viable or necessary. I am, after all, just one person. I don’t leap tall buildings in a single bound. I can’t heal the sick with a wave of my hand. I wish I could, because I would use those powers to help the people who really make a difference in this world.

With all of my frustrations over the past few weeks, it’s easy to get wrapped up in my own drama, to feel frustrated. But I sit here now on Thanksgiving knowing that my mother’s cancer experience changed me as a human being. On this day, I do give thanks for the many blessings. For all the strange people who feel compelled to trip me on life’s highway, there are so many more who have offered me a hand up, who have shared a kind word or thought, who have impressed me with their grace under fire. I have met many cancer survivors who have done incredible things with their lives as the result of their experiences with the disease. Would they have tried so hard or dug so deep without that cancer? Maybe not. Sometimes it’s the hardships in life that define us as human beings.

I’m so glad that I didn’t walk away from the cancer community after my mother died. I certainly could have. But those people who share with me are my teachers. They constantly remind me that tomorrow is promised to no one and we must take advantage of today. When I think of the young mother trying to boost her immune system so she can survive to see her kids grow up, when I think of the cancer survivor who shopped for a fancy pair of shoes for a cancer gala with such delight, when I think of each and every cancer widow and widower,and the children left behind, struggling to find the joy in the holiday without a beloved spouse or parent, I am reminded that I am blessed with more than I realize.

Cancer is a cruel disease. It can wreak havoc and ravage the beautiful landscape of the human body. But in those moments of choice, when we men, women and children stand on the precipice, looking down on what is right there in front of us, across at what is out of reach, and above at what we aspire to overcome, perspective is everything. Sometimes it’s not what we expect to do that makes us amazing human beings. Many of us don’t set out to be heroes. But every time we reach out to other human beings and push back at that darkness, we do more than just gain some ground in the fight against cancer. We come back stronger, wiser.

Cancer doesn’t just affect the human body, it shapes the spirit. Fate hands us the circumstances of our lives, but destiny forces us to choose the path, even when we don’t know the outcome. When we take charge of our own selves and how the world affects us, we are no longer victims — we are survivors of the Great Lemon Wars, servers of the world’s best lemonades, sweetened with our compassion and commitment to do right by those we love.

We forget that cancer survivors are sometimes the greatest givers of love. Even when a cancer patient can’t do all the things he or she wants to do, the hand can reach out and touch another human being in need. For many cancer survivors, time becomes a tool for a purpose-driven life; they are thrust into the realization that “it’s now or never!” Until that final breath, there is time for one more moment of joy.

When a disease like cancer robs people of options to achieve their dreams, it’s easy to believe that there is nothing left to work for, to strive for, to hunger for; and yet, wise teachers that some cancer survivors are, there are those who show us that dreams can and do evolve when the spirit is determined to make the best of a bad situation. For every frustration, every failure, every fluke of nature, we can and should look for hope, for help, and most of all, for happiness.

To all of you cancer families out there, I wish you a bountiful Thanksgiving. Eat at the table, but don’t forget to feed your soul. Believe in something bigger than this senseless disease. We have much to be thankful for on this day. It’s not about a boatload of people who stumbled onto the shores of Plymouth Rock and sat down to share a meal with the Native Americans they met. It’s about life and the people we treasure. Without them, our world is a lonelier, colder, darker place. Long after they are gone from this earth, they still remain with us, We will treasure this day and what we make of it, so go have some fun today. Don’t sweat the small stuff. Hug and be hugged. Laugh. Share. Even if it means shifting your path for just a moment, make one person happier today. Life is for the living, but it’s also for the loving. We have this moment in time, so savor it. God bless you.

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cancer caregiver caregiver education caregiver psychology holidays Thanksgiving

What Do Cancer Patients Need for a Happy Thanksgiving?

Oh, I’ll bet you’re expecting me to tell you all about how to teach your loved one with cancer to appreciate being alive at Thanksgiving, how to embrace the mood, the moment, the celebration. After all, we gather to give thanks for what we have, as extended families bring green bean casseroles and pumpkin pies in Pyrex and Tupperware. What could be a bigger downer than having a loved one with cancer at Thanksgiving? I’ll tell you. It’s having a loved one who is disrespected at Thanksgiving.

That’s right. Disrespected. Flat out disrespected.

How can I even suggest that, when everyone is trying so hard to be inclusive of someone who’s struggling with survival? I’ll tell you how. That’s because I’ve witnessed it more than once. (I’ve also heard it from a number of cancer survivors, how the family dynamics change.) The loved one with cancer becomes overwhelmed, physically and emotionally, trying to keep up with the party, and suddenly it’s an up-in-your-face reminder that you’re dining with the Big C.

The trouble is that healthy folks, who may not have any insights into how cancer takes its toll, are still in B. C. mode (that’s “before cancer” for those of you who are new to the game.) They often like to eat themselves silly with all of the classic Thanksgiving Day staples, like cheddar broccoli and stuffing with sausage. They can’t wait to get their hands on the drumsticks, the dinner rolls, and especially the desserts. Nothing is going to stop them from partaking in all the food and fun. They’re on a mission, a Thanksgiving Day mission.

Meanwhile, your loved one may be struggling with some very real physical and emotional issues that need addressing. Now that cancer has rocked your loved one’s world, it’s time to adapt to the reality of those changes.

Does that sound complicated? Do yourself a favor and don’t over-think it. Concentrate on two things. Food and rest. It’s really that simple.

For a cancer patient, especially one still undergoing chemotherapy, the holidays can be exhausting in many ways you have probably never experienced. Here are some important questions to answer:

1. What time of day does your loved one have the most energy?
2. What time of day does your loved one have the least energy?
3. What time of day is your loved one best able to enjoy a meal?
4. Will your loved one’s chemo fatigue kick in, and will he/she need to take a break?

Bottom line? It’s just possible that your loved one just doesn’t have the stamina to endure the Thanksgiving Day celebration. Are you hosting or are you visiting? If you’re hosting, it’s fairly easy for your loved one to slip away and lie down when he/she is tired. But if you’re visiting, you’ll need to speak to the hosts ahead of your arrival. Ask if there is a quiet room where your loved one can rest, should the need arise. Sometimes just lying down for an hour or so can keep a loved one at the party.

Some cancer patients make special arrangements for chemo treatment to accommodate the holiday, so that they don’t “crash and burn” on Thanksgiving. They talk to their oncology team early and discuss strategies to cope with this issue. Encourage your loved one to do this and sit in on the discussion, so you understand what’s going on in chemo treatment.

Remember to err on the side of caution if your loved one’s immune system is conked out. Better safe than sorry, especially during flu season. Hand washing by guests is critical. Avoid kissing and hugging. If the risk of infection is too high, consider staying home and having a video chat with those near and dear.

If you and your loved one have a long drive to make, be sure to bring along a pillow and a lap blanket, so your loved one can get comfortable. Consider the drive to be “rest time” and make it relaxing for him/her.

When it comes to the Thanksgiving meal, know what your loved one is able to tolerate. Many cancer patients can’t eat certain foods. If you’re hosting or you have a good relationship with the hosts, work on a menu that will please the turkey traditionalists, but will also provide foods your loved one can and will eat.

Very often, families aren’t aware that cancer patients find eating to be an exhausting process. Chewing will actually tire them out. The nutrition team at your loved one’s cancer center can help you plan a banquet that includes foods that will provide the necessary calories and be easily digested. They often have all kinds of tricks for adapting foods to make them even better. Not every cancer patient is going to have the same diet. Different chemo drugs and different types of cancer create different dietary needs. If your loved one is experiencing diarrhea, for example, greasy foods may exacerbate that situation and cause distress. That’s why it’s important to sit down with a cancer nutrition expert and understand how best to meet your loved one’s specific dietary issues. Consider it part of the medical treatment plan.

Got a good recipe for butternut squash soup that you know your loved one enjoys eating? Serve it as part of the family meal, so your loved one won’t feel singled out for special treatment. Will there be appetizers before dinner? Cancer patients sometimes do better when they nibble than when they sit down for a huge meal. In this case, he/she won’t “ruin” his/her appetite. Don’t draw a lot of attention to your loved one’s eating. With healthy, digestible food choices present, your loved one can eat as he/she sees fit.

Understand that chemotherapy can change how foods are digested. It can also change how they taste to your loved one, and that can and will affect appetite. This is usually a temporary thing. Some cancer patients who love dairy develop lactose intolerance, much to their dismay. Some patients can’t digest raw vegetables, so cooking them can make a difference. Some fruits go down easier than others. Very often, the recommendation from nutritionists is to puree foods, to make them easier for cancer patients to eat. Smoothies don’t require chewing and they’re usually quite soothing to sip. (Have I convinced you yet to talk to the cancer center’s nutrition team yet? I hope so. They’re more than willing to help you feed your loved one.)

Remember to leave the food police at the door when guests arrive for the Thanksgiving celebration. No one should be commenting on your loved one’s food intake, insisting he/she eat this or skip that. Sometimes a spoonful of sugar, in the form of human compassion, is the best medicine to go down. If you and your loved one know ahead of time what foods will work and what will not, there’s no need to explain or defend yourselves. Just smile and say, “Thank you for your concern, but we’re following doctor’s orders.”

With all this talk about food and fatigue for cancer patients, I don’t want to neglect a very delicate subject. Holidays can bring out the worst in some people. Tensions run high with elevated expectations of “instant happiness”. Some families bicker. Some families think there are only certain ways of doing things. A cancer patient’s needs can and should come first. Work around them. Adjust the celebration to accommodate your loved one at that moment in time. If that means you eat an hour or two earlier or later, so be it.

What do you say if a family member balks? You say this: “I know we normally do things that way, but this year, we’re going to do it this way. And I’m sure when our loved one is back on his/her feet, we’ll go right back to doing it the way we’ve always done it.” Treat any changes in holiday traditions as temporary, because they usually are. When families know that you’re not throwing out the time-honored traditions permanently, you’ll often find greater cooperation and willingness to sacrifice.

Most of all, when you all sit down and look across the table at each other, focus on why it’s so good to be there. Appreciate the family for the people in it. Take the time to laugh, to share stories, to toast another year of life for all of you. You have this time, this moment to share. Make memories.

Categories
cancer caregiver cancer management caregiver education caregiver psychology caregiver strategy

Match the Cancer Support to the Cancer Needs

I remember a very trying time, when my mother was dying of lung cancer. Someone who knew that she had been treated for cancer asked how things were going. Short answer? Not good.

Normally, most people might ask if there’s anything they can do to help. In this case, the person proceeded to launch into a long description of her husband’s long-time prostate cancer situation, and ruminated about his once-in-awhile pill treatment regimen. At the time, I was spending my days and nights providing physical, emotional, and even mental support for a woman who was very frail as the result of the progression of her cancer.

What do you do when someone “ups” you after inquiring about a loved one’s cancer? Walk away. In this case, I learned the hard way that this woman was claiming her husband’s cancer as some kind of badge of honor. She was in her glory, suffering alongside him. Guess what…after another five years, her husband’s still going strong, still living a great life, without any serious health issues. And she’s still playing the cancer card, to make herself seem important. Goes to show you that not all cancer is equal and that cancer survival depends on the type, stage, and treatment options.

It’s sad, but true. Many people who have loved ones managing what we might term “highly survivable” cancers often lump themselves into the same group as those of us who are struggling to help our loved ones with progressive cancer. What does this mean? We have two very different kinds of caregivers.

If you are providing physical care to a cancer survivor who is not thriving, especially if the treatment is harsh and the side effects are debilitating, it’s important for you to recognize the stress you and your loved one are under and to acknowledge it. This is not a death sentence for your loved one — far from it. You may be on that roller coaster as a family, riding the ups and downs of cancer management. When you accept the reality, that your loved one is struggling, you can take advantage of a very important caregiver tool — the chance to decide how your relationship will be defined.

For those of us who have walked in these shoes, we know that having the chance to make these decisions allows us to find peace at a critical time in cancer care. When we see the struggles of our loved ones, when we understand their impact on the family and our extended social circles, we take actions that often times make an enormous difference for all of us.

Not all cancer is equal, so when cancer becomes the greater part of a loved one’s life, that is the time to up the family bonds. In the short summer of sunshine and butterflies, we move about easily, finding food abundant and life pleasant. In the long winter of despair, we need warmth, comfort food, and laughter to see us through the dark hours.

Having a woman compare her husband’s non-debilitating prostate cancer to my mother’s debilitating lung cancer was a real eye-opener. It was hurtful, to boot. I knew I wasn’t going to change her opinion or mindset. That was too wrapped up in her personality and her need for attention, both of which existed before her husband’s cancer came along. But it did give me a good kick in the fanny that I needed. It made me determined to fit my caregiving to what my mother really needed. More enabled activities to please her through difficult hours. More emphasis on asking her what she needed to do, rather than focusing on my own needs. More determination to make good things happen for her while she had the energy to accomplish things on her “to do” list.  Knowing that my sacrifices would soon end enabled me to make greater sacrifices  for her while there was still time.

There is honor in helping another person live. It’s easier to defer one’s own satisfaction for a year when one knows that life is finite, to put goals and plans on hold. We can make better decisions that produce better results and greater rewards by being mindful of reality. We are not waving the white flag of surrender. We are living in the moment and making the moment count. If anything, my mother lived longer because she was able to do what mattered to her, instead of spending her days feeling like a helpless victim. And I was able to get through the trying times by constantly reminding myself that my days as a cancer caregiver would soon end. Like a marathon runner, I learned to pace myself as I ran up the hills and around the curves in the cancer road. I took advantage of the good days to make progress, to find the joy. When you look for something to celebrate, some little snippet of goodness, you will often find it. When you assume there is no light, you will see only the black night of the soul. Choose wisely. What does the heart need, even as the body fails? What does the spirit seek, even as the body fails? When we give a loved one wings to rise above the mortal limitations, we enrich our bonds in amazing ways. This is the time to build lasting memories to remind us that love is a powerful thing.

The fact is, sadly, that for some cancer patients, there is no cure, no magic wand to wipe away this hideous disease. When we are mindful of the level of struggle our loved ones are currently experiencing, we are able to take advantage of the information in ways that can be life-changing. By realizing just how far my mother’s health had deteriorated, I was able to understand that the cancer and related complications were progressing. That meant that the hourglass was running out. As a caregiver, I would soon be out of a job. I needed to know that, in order to maximize the support my mother needed and to pace myself, to accommodate my own life.

A cancer caregiver may go through a number of periods of providing care, and that care may be of varying degrees of hands-on involvement. Very often, especially for the newly diagnosed, the treatment itself is overwhelming to the physical body. Our loved ones look like the Walking Dead until the impact of chemotherapy, radiation, and even surgery kicks in. We may go back to our normal lives and forget about cancer until the next scan shows something or a new symptom appears. Then we jump in again and help out until our loved ones are back on their feet again. But if and when there comes a time that the cancer proves too great a foe, we need to accept the reality and maximize what time we have left with our loved ones. We need to take the trips, have the parties, be together in ways that allow our loved ones to embrace the life that is still with us.

Some people think it’s best to soldier on, to pretend things are good when they are not. Denial prevents us from embracing the love, from finding the opportunities to live life out loud. When you see the changes in your loved one, when you feel that dread in the pit of your stomach because you can recognize the physical signs, consider this the winter of your loved one’s life. Don’t run away or hide. Build a mental refuge where the family can gather. Fill it with warmth, laughter, and comfort, with people who love your cancer survivor. Reach out to those who are receptive to your loved one’s plight. Ignore those who are not.

What did we find in my mother’s last months? The good friends who cared about her kept calling. The fair weather friends fell away. The relatives who understood the importance of sharing the love came calling. The ones who didn’t stayed away. The real tears were shed outside my mother’s room. The crocodile tears were shed for effect, with a lot of hand-wringing, lamenting the situation in public settings.

When people ask a cancer caregiver what is needed for a loved one whose condition has deteriorated, it’s hard to sometimes say. I can tell you what my mother told me. She wanted cards and letters. She wanted to know that, even as she was confined to home, she was not a forgotten prisoner, locked away. Did she still matter to people? Did they think of her? Did they want to share what mattered most, in their hearts, their minds?

When a cancer survivor begins that last descent, it doesn’t happen overnight. It happens over time. Months, weeks, and finally days. If a cancer caregiver recognizes the signs when death is still months away, there is time to build some very wonderful memories. If a cancer caregiver only pays attention in the final weeks, there can be a great rush to get so many important things done, it’s exhausting. And if a cancer caregiver only wakes up to the reality days before a loved one takes his or her last breath, the result can be devastating for everyone.

My mother benefited from being able to express her worries, her hopes, and even her dreams as her life drew to a close. That enabled us as a family to find ways to comfort her, to encourage her to speak up about what she wanted, for herself and for the family, and even to address the future without her. Many people think that speaking of death is a grim subject that only hastens the end of life. But for many cancer patients, having the opportunity to live the reality means freedom to enjoy the time that is left. Life becomes a great gift, all the sweeter because we know we will soon say farewell, and in the knowing, we have the chance for that one last dance.