Category Archives: awareness

Challenge ends–but the work continues

awareness, Goals, NET Cancer Awareness Day/Month

Where we stand

This post finishes the 30 Day Walking with Jane NET Cancer Awareness Month Challenge. I hope you’ve found things in it of use. I’ve tried to deal with subjects that matter to both patients and caregivers. I’ve tried to create hope in what is too often a bleak landscape. But I’ve tried to be realistic, as well.

It was easier when I was numb…

The truth remains, nearly six years after Jane’s death, that we still have no cure for NET cancer. We’ve made progress at improving patients’ quality of life. We’ve given them longer and better lives. We’ve begun to understand some of the underlying mysteries that make the disease so difficult to diagnose and so difficult to treat. And we have some newer and better ideas about how to proceed.

Knowledge challenge

We need more researchers and more research. That means we need more resources–a lot more. But things have improved on that front. We have nearly eight times as much money to work with as we had six years ago. That still doesn’t amount to a rounding error on what we spend on other cancers. But it is a bigger rounding error.

…I’ve tried to be realistic…

Six years ago, Jane’s 26 days in the hospital doubled our knowledge of the disease. And what we spent on her care over the last three months of her life nearly equalled the total we spent on research in the US–from all sources–that year. The post surgery treatment plan we talked about then included things no NET cancer patient had ever tried. Today, liver embolization is often something NET patients are offered–as are many of the other things we talked about as possibilities.

Diagnosis and treatment challenge

Patients in the US had octreotide–and little else, six years ago. Afinitor (Everolimus) had just been approved, but only for patients with pancreatic NET. Patients who could find the money could fly to Europe for PRRT. Patients who couldn’t went without–and sometimes died as a result. Today, there is Lanreotide, as well as Afinitor. The results of the PRRT trial sit on a desk at the FDA awaiting approval, as do the results of the Telotristat trial.

We need more researchers and more research.

Six years ago, NET cancer was all but invisible on every scanning device we had. Then researchers developed the Octreoscan, which lit the tumors up like a Christmas tree. Now, we have begun to see implementation of the even better Gallium-68 scan that shows the tumors in much higher definition. But we still lack a simple, affordable, and widely available blood test as a diagnostic tool. Doctor don’t like ordering expensive tests for a disease too many have still never heard of.

Awareness challenge

Awareness, however, remains a problem. Medical schools do a better job of raising NET cancer as a possibility than they did ten years ago. But we do too little in-service trying and consciousness raising with general practitioners. And too many doctors who have heard of it brush off testing for it because they believe it is too rare to consider.

Patients who couldn’t went without…

Awareness among the general public is even worse. If I say I am doing the MS or Cystic Fibrosis Walks, most people know what I am talking about. I’m still waiting for the moment a stranger tells me they’ve heard of NET cancer when I tell them what I do. Yet the number of cases of CF and MS diagnosed each yer combined is less than the number of cases of NET cancer diagnosed.

The challenge of patient knowledge and support

Patients have far more access to information than they did six years ago. We have more patient conferences. We have more support groups–including groups that exist online and on Facebook. And we have books and articles written specifically for patients. People used to say that anyone who’d been a NET cancer patient or caregiver for three months had the equivalent of a Ph.d in the subject.

Awareness, however, remains a problem.

I suspect that level of knowledge takes a bit longer to get than it once did. We know more now than we did then. But this often means patients still know more than their primary care doctors do about NET. Sometimes, especially if they are not seeing a NET cancer specialist, they know more than the oncologist they initially see who ends up running their treatment. Too many patients and caregivers still have to be strong advocates for themselves if they want to get the best treatment.

Caregiver challenge

And then, there’s the challenge we too often forget about or brush over. Caregivers are in a tough spot, regardless of the illness their other half faces. Their difficulties multiply when they face a disease as debilitating as NET cancer. At times, I felt trapped and overmatched by the enormity of Jane’s last days. Some days, I still do. Over the last several days of this challenge, I’ve written a series of posts on how to be a better caregiver.

Patients have far more access to information…

This morning, I got a note from another caregiver: “How does the caregiver overcome self-recrimination?” he began. (You can read the rest of his note here, at the end of yesterday’s post.) I intend to write a post on dealing with the aftermath of losing a loved one you’ve been the caregiver for later in December. But his plaintive response underlines what a poor job we do of helping lay caregivers deal with what they encounter. We desperately need more dedicated resources for people in that role, no matter what disease they face. Letting us lurk in patient support groups is not enough.

Personal challenge

For a bit more than six years, I’ve knowingly dealt with NET cancer virtually every day. I’ve done that while trying to deal with all the other aspects of my wife’s death. It was easier when I was numb most of the time–which was the case for much of the first five years after her death. Sometime in late 2015 or early 2016, I started to hurt. It’s been awful. I have days when getting out of bed is a struggle. I make plans and lists but have entire days that vanish in aimless wandering. So I’m taking a break–intentionally this time. I can’t say how long, because I don’t know. A good chunk of December, I suspect, at a minimum.

Caregivers are in a tough spot…

I’m going to sit and cry for a while. And I’m going to think about the other promises I made Jane beyond killing NET cancer and putting up the tree. Those, I’ve worked at keeping. But I also promised her I wouldn’t stop living; that I’d let love come into my life again–and give that opportunities to happen. I promised her I wouldn’t spend the rest of my life as a hermit in a cave. I haven’t done very well at any of that. It’s time I did better at honoring those promises.

 

Each promise I made to Jane is a challenge that makes my life, life. I finished putting together my outdoor decorations this afternoon--a promise I made Jane about how i would continue to honor the holidays we both loved.
Each promise I made to Jane is a challenge that makes my life, life. I finished putting together my outdoor decorations this afternoon–a promise I made Jane about how i would continue to honor the holidays we both loved.

Self-care for caregivers–Advice Part 6

awareness, Caregiving

Why self-care matters

Self-care is the last thing most caregivers want to hear about. They focus on the patient and their needs. Taking even a minute from that work can–and does–feel like a betrayal. Sometimes, even the patient sees it that way. There were times Jane certainly did.

…we will laugh again…

But we lay caregivers ignore self-care at our peril. If we don’t take care of ourselves, there will come a point where we can’t take care of the person we love. We have to have our wits about us. If we don’t get enough sleep or enough to eat, we won’t be sharp when we need to be. And never mind what would happen if we got sick.

The caregiver’s journey

I’ve never faced greater difficulties mentally, physically, or emotionally than I did over the four months from Jane’s diagnosis to her death. I lost 20 pounds. By the end, I walked like an old man–literally shuffling from place-to-place. Some would say I still have not recovered my sanity. I know I am only now coming out of the numbness that loss engendered.

…we lay caregivers ignore self-care at our peril.

And four months is nothing when it comes to NET cancer–or many other diseases. My mother suffered with Alzheimer’s the last 20 years of her life. My father stayed at her side constantly for every one of those years, despite heart problems of his own that led to a quadruple by-pass. I marvel at that. And I marvel at the many husbands and wives who have faced NET cancer together for years and decades.

Balancing self-care with patient care

Self-care is very much a balancing act. You have to know the difference between what you need and what you want. And you have to stay aware of what the patient really needs as opposed to what they want. This is especially true in the late stages of the disease where any absence feels like a betrayal to you both. If I were gone for a full day to go home and pay bills and pick up clean clothes, I knew Jane was not going to want anything to do with me when I got back.

By the end, I walked like an old man…

But I made those trips anyway. I couldn’t forget where Jane was. I couldn’t ignore the guilt I felt. But each trip enabled me to believe Jane would come home eventually. Each trip proved to me, somehow, that she was getting better: See, I could leave her and nothing bad happened.

Physical self-care

From the beginning, you have to take care of yourself. The first piece of that is taking care of your physical needs. You may not want to eat, but you have to. And fast food, tempting as it is, is not the right answer here. You need the proverbial balanced diet. You need to eat at regular intervals so you avoid gorging yourself when you do eat.

Self-care is very much a balancing act.

For me, personally, that means a good breakfast to start the day. Stay away from the donuts. The sugar high will only make you hungry sooner–and the crash will tend to make you feel depressed. It’s hard to keep the patient positive if you look depressed. Eggs, oatmeal or low sugar cereal, fruit, or yogurt are all good choices. Lunch and dinner also have to be health conscious meals. They need good protein sources, good carbs and vegetables.  Snacks between meals are fine, but make healthy choices there as well. The occasional candy bar won’t destroy your health, but too many will become a problem.

Benefits of daily exercise

Self-care also requires exercise. Even when Jane was in the hospital, I got in a walk every day–usually after I’d had lunch or dinner. Walking does more than keep your muscles working. A good walk–or any sustained physical exercise–releases endorphins that improve mood and attitude. If you like working out in a gym, go there. It will also provide you with socialization beyond what you get from doctors and nurses. Seeing people who are not going through what you are can be a good thing.

Stay away from the donuts.

I don’t like gyms. There is a set of free weights in the basement–nothing heavier than 10 pounds–and I work with them every other day. I do lots of reps to maintain muscle tone and stamina. I missed that when Jane was in the hospital. I’ve since thought a half-hour in a gym might have been good for me mentally and emotionally, but I wanted to be close by if Jane needed me. I restricted my walks to the neighborhood when Jane couldn’t walk with me anymore.

Self-care for the mind

Avoid alcohol or “recreational” drugs. Either can cloud your judgement. Alcohol is a depressant–as are many other drugs. Neither of us used drugs at all or drank beyond a glass of wine or beer with dinner once a week. We stopped drinking even that much–save a glass of champagne on our anniversary–after Jane’s diagnosis. It was nearly a year after Jane’s death before I had a beer again. I didn’t trust myself not to climb into the bottle and hide there.

Self-care also requires exercise.

In retrospect, I think counseling would have been a good idea for me after Jane’s diagnosis. I needed more coping skills than I had. And I certainly needed someone non-judgmental to simply listen to what I was feeling and experiencing. Frankly, we already had too much on the table at that point; I don’t know where the time would have come from. I’ve sought out some counseling since, but haven’t found anyone I really trust crawling around in the dark spaces of my mind, yet.

Emotional self-care

Laughter is an important balm for both of you–but especially for you. You need to find times and ways to laugh. Buy or rent a DVD, or go on Netflix and find the kinds of comedies you like that make you smile. It’s hard to do, I know. We reached a point where any time I suggested we watch a comedy together, Jane got mad. I stopped making the suggestion, but looked for small bits of humor when I went to the cafeteria to eat or went for a walk. Laughter cleanses the soul and gives us a momentary release that lets us face more hardship than we might otherwise.

I needed more coping skills…

Some people find strength and solace in prayer. If you do, don’t hesitate. I spent time in a nearby church and more time in the hospital chapel. I became friendly with a couple of the chaplains. Honestly, it didn’t help much. But I know others who swear by it. Just don’t push your faith–or lack thereof–on the people around you. It’s insulting and hurtful when people need to have their attention on other things than what you believe, or want them to believe.

Solace in others

Do talk with others in your situation about what they are going through. Listen to what they say has worked for them in keeping their sanity. One of the best pieces of advice I got was from a woman who’d nearly lost her husband to heart disease. She talked to me about how important being upbeat in Jane’s presence all the time was to Jane’s survive as a patient. But she also told me to remember the experience caregivers have is very different from what patients experience. Our needs are different–and they matter every bit as much as what the patient needs. We really need more support groups for caregivers.

Laughter is an important balm…

If you go to Relay for Life, they have a huge celebration of survivors. Sometimes they are accompanied by their caregivers, but the survivors are the center of attention–as they should be. The caregivers’ lap comes much later in the program–and often feels like an afterthought. Until you’ve been a caregiver locked in a life-and-death struggle with someone you care deeply about, you don’t get it. As emotional as the Survivor Lap is for me, it pales beside what I feel when I am on the track with my fellow caregivers, especially those who have lost someone to cancer in that role.

The final journey together

With NET cancer, the reality, right now, is that eventually, we are going to fail. Barring a major breakthrough on the research front, there will be a final trip to the hospital and a final bedside vigil in our future. We will stand at the head of the line at the wake, sit in the front pew at the funeral, and be the last to leave the grave. Eventually, the numbness will go away and the hurting will start. I know. I’ve been there–and still am.

Our needs are different…

Someday, we will laugh again, without feeling guilty or feeling that we failed. We’ll know–in our hearts as wells our heads–we have done the best that we could do–and that will be enough.

Self-care continues even after the patient dies. Training for my first Jimmy Fund Walk helped keep me sane in the months after Jane's death.
Self-care continues even after the patient dies. Training for my first Jimmy Fund Walk helped keep me sane in the months after Jane’s death.

Doctor visit prep and execution–Advice Part 5

awareness, Caregiving

Preparation first key

Any doctor visit is taxing–even when you are in good health. At least they were for Jane and me. And once you have a cancer diagnosis and appointments that are not ten minutes from your door, things get worse. The key to easing some of that stress comes down to prior preparation and then following through when you get there.

Good preparation is critical.

When I go to the doctor, I always go with a written list of questions, a notepad and a pen. Like most people, I get nervous in the presence of those white coats. If I don’t have my questions written out, I know I’ll forget to ask something I’ll regret later–like making sure to get a refill order for my prescriptions.

Cancer complicates things

My medical issues are pretty straight forward compared with any cancer. And NET cancer is about as complicated as cancer gets, at least in my mind. In addition, I wasn’t keeping track of things for myself; I was trying to make sure I understood what was going on for Jane.

…I know I’ll forget to ask something…

That meant spending time the night before talking over her experiences over the past days or weeks. I needed to know what had changed in her body. We needed to figure out what questions those things raised, both in her mind and mine. You don’t always get those things from routine conversation or daily observation. For example, I went to work every morning. I couldn’t tell how many bowel movements she had in the course of the day.

Finding the truth

And Jane was very good at hiding her pain and increasing lack of mobility. Any cooking or organizing she did took place during the day. I knew she went up and down the stairs, but only saw her difficulties on them when we went out together. I observed constantly, mind you. It just wasn’t enough.

…NET cancer is about as complicated as cancer gets…

In some senses, our conversations the night before an appointment became a rehearsal for that appointment. I asked the same kinds of questions I knew Jen would ask the next morning. Sometimes what she told Jen was very different from what she told me. I had to call her on it when she understated something. Jane didn’t always appreciate that.

Honesty and equality

But my job required her doctors have the most accurate information we could provide them. Love sometimes requires a toughness we’d like to avoid. Fortunately, Jane understood that most of the time. Caregiving is built on love and trust. You have to nurture that constantly. Maintaining honesty is part of doing that.

Jane didn’t always appreciate that.

But it is difficult–especially when you’ve been equal partners from Day One. Over time, caregiving can shatter that equality if the patient becomes increasingly unable to make their own decisions. With NET cancer, as the disease evolves, that increasingly becomes the case.

Two kinds of questions

Knowing accurately your partner’s physical and mental condition is only part of the preparation. The other is coming up with the questions that need asking and answering. You have one set of questions going in: Can I keep walking every day; why hasn’t the medication addressed the swelling in my legs; what does this sudden dizziness when I get off the toilet mean?

Caregiving is built on love and trust.

But other questions arise because of the conversation with the doctor. Part of that derives from the fact doctors often speak in medical terms rather than human ones. I remember one of Jane’s mother’s doctors who seemed to think everyone in the room had a medical degree, including Jane’s mother who had not graduated from high school.

Understanding doctor speak

Jane often understood her doctors better than I did. She taught biology and chemistry and understood how the two things related to each other. I was an English major. I dabbled in the sciences, but not at Jane’s level–and certainly not at the level of her doctors. And I had to understand what they said because Jane relied on me at home to know what needed doing.

…doctors often speak in medical terms…

Fortunately, I don’t mind asking seemingly stupid questions. I’d rather ask until I understand than pretend I do. As one of my students said, “Stupid people don’t ask stupid questions. Smart people do.” It’s a mantra for good journalists–but also a mantra for good caregivers. We have to understand what a doctor tells us with a good level of certainty. Ask until you understand.

Take notes

I carry a notebook with me everywhere I go. It’s a habit I picked up as a young journalist. Caregivers need to make sure they always have one with them as well. First, it’s a place to write down questions and observations as they come to you between doctor visits. The night before an appointment, you organize those things so you won’t miss getting them into the doctor’s head the next day.

…a mantra for good caregivers.

During the visit you take notes on everything: weight, blood pressure, test results, examinations, observations, recommendations. You check off each questions as it gets asked and take notes on what you get for an answer. You write down other questions as they occur to you from what the doctor says. And you record those answers as well. Before you go out the door, you need to check to make sure every question got an answer you understand–and that you left nothing out the doctor needed to hear.

Discuss what you learned with each other early

Ideally, you should be able to reconstruct the entire appointment accurately from your notes. And you want to do that with the patient as soon afterward as you can to make sure you both heard the same things. Your notes will likely be more accurate than their memory, however. And those notes will help you understand how things have changed since the last visit–or the first visit.

…take notes on everything…

From doctor visits we get the information we need to have to take better care of our partners and make better decisions down the road about treatment options. Good preparation is critical. Don’t neglect it. But remember, you have to do all of this and be emotionally and physically supportive at the same time.

Jane hated going to the doctor, but she knew prior preparation made the visits more productive.
Jane hated going to the doctor, but she knew prior preparation made the visits more productive.

 

Stage after stage of dealing with illness–Advice Part 4

awareness, Caregiving

Kubler-Ross’s stages

Popular culture has accepted Kubler-Ross’s Five Stages of Grief as truth. Studies done since her book, On Death and Dying, was published have poked lots of holes in the idea, but people still think of it as reality. It serves as the base for how lots of people deal with the loss of a loved one. But the model doesn’t really deal with how people deal with a death after it happens. It tries to deal with what a person confronting a serious or fatal illness goes through, stage by stage.

…always act out of love. 

She based her ideas on her observations of people who knew they were facing a fatal injury or illness. I suspect that patients go through something like what she describes in coming to terms with their own death before it happens. I suspect spousal caregivers go through something similar while their loved one still lives.

It’s pre-death–not post

But after six years of living with the loss of Jane–and talking to many other widows and widowers–the five stages concept operates as a comforting myth for those who have not experienced the loss of a spouse. It has little bearing on the reality of our lives after a husband or wife stops breathing. Even after we’ve accepted the death as real, it still hurts like Hell.

…people still think of it as reality.

But it is a useful thing for caregivers to understand on two levels. First, the patient does go through much of what the theory states. Where they stand in that process influences their attitude and how they deal with things. And we, as caregivers, go through those stages not only with the patient, but in our own minds as well. The problem is, we don’t often go through them at the same pace. That can create frustration on both sides.

Stage 1: Denial

Jane and I were both in denial for a long time. She wanted to believe her shortness of breath and loss of stamina can as the result of her slow recovery after the flu. I believed that, too. But we remained in denial even after her diagnosis with NET cancer. We accepted the rosiest version of things until the condition of her heart shattered all of our illusions.

…it still hurts like Hell.

And yet, part of me remained in denial until the day before she died. We need to understand the constant overlap of all the stages. Just because we get angry doesn’t mean we’ve left denial behind. Even when we reach the last stage, acceptance, traces of all the other stages remain. Death may resolve all of this for the patient. We can’t know that. But it doesn’t resolve everything for the caregiver. It compounds the issue with the bitter emotions of actual loss. But that is a topic for another day.

Problems denial creates

Denial can slow access to treatment. Because we kept coming up with what seemed reasonable reasons for what Jane experienced in the months after her battle with the H1N1 virus, we didn’t really worry about putting off seeing her doctor. Jane felt under pressure to make up the ground she had lost with her AP biology students. Pressure always gave her increased diarrhea and insomnia.

…the condition of her heart shattered all of our illusions.

A diagnosis six months earlier likely would not have meant much in terms of longterm prognosis in Jane’s case. But with a different cancer, it might have. I’ve seen many others put off dealing with symptoms to their detriment. Denial creates a kind of deadly inertia both patients and caregivers need to fight. I still wonder if we had gone for the heart surgery earlier if it might have made a difference–though I’ve been told multiple times it would not have. Denial of the seriousness of her heart condition did convince us that waiting would be OK.

Stage 2: Anger

Of the five stages, anger may be the hardest one to deal with. Anger is a blind emotion and causes us to lash out at those closest to us. I was quick to anger as a child. It made me so violent I considered myself a danger to both others and myself. I sublimate anger constantly and try to direct it in useful directions when I have to let it out. But the depth of anger is sometimes too great to control and it leaks out in unintended ways. I hurt people with some frequency when Jane was sick–and for a long time afterward. I cut people with my words without knowing it until someone pointed it out.

Denial can slow access to treatment.

Somehow, I managed to largely keep my anger in check where Jane was concerned. But I made clear from the outset that she could use me as a target for her anger at will–and that I wouldn’t return her anger with anger of my own directed at her. I used a kind of sleight-of-mind for that. I discovered that if I took the blame and apologized, even if I had done nothing wrong, it eased her anger. And I convinced myself that, much of the time, it was the cancer I was talking to and not the woman I loved. Not that I didn’t sometimes giver her cause for anger–and it horrified and angered me every time it happened.

Stage 3: Bargaining

I don’t know what kinds of bargains Jane made–or tried to make. I suspect part of her willingness to let her doctors study her was part of one of those bargains. Jane did not like strangers poking and prodding her under the best of circumstances. I know the scientist in her would not, however, have allowed her to do otherwise than she did. And our conversations showed me clearly what she wanted.

Anger is a blind emotion…

I do know I went into bargaining mode pretty quickly once we had a diagnosis. From my reading, I knew just how much trouble lay ahead of us. I knew we had one of the best oncologists in one of the best cancer centers in the world working with us. I knew we had access to the best cardiologists and surgeons in the world. But I also knew we needed miracles stacked on miracles.

Bargaining scars

I believe in higher powers, But we haven’t spoken since Jane died. A chunk of the anger I stored during Jane’s struggle rages in their general direction. To tell the truth, though, most of it gets aimed at me. I failed her. That failure places me in a special kind of Hell. My efforts did nothing but stretch out her suffering. My bargains didn’t work.

…we needed miracles stacked on miracles.

You can’t bargain with mindless cancers. You can’t bargain with mindless death. Consciously and intellectually, I know that. But emotionally… For caregivers, the emotional scars those bargains leave behind are significant. Losing them feels like a personal failure we should have found a way to avoid. That we didn’t scalds our souls. But that, again, comes after they die, not before.

Stage 4: Depression

Depression takes many forms–and caregivers, wrapped in their own anger and depression and the daily duties of the work, may not always see it in the patient when it arrives. And it comes and goes for them the same way the other stages do for both of us. I remember Jane’s reaction when I told her I wanted to take an extended leave from work to stay home with her first semester.

You can’t bargain with mindless cancers.

“Why? So we can sit here and stare at each other?” she said. Her voice was angry, but her words told me she was already depressed. Yet a week later, after our first trip to Dana-Farber, she was enormously upbeat and positive. A week later, she was screaming at me in a fast food parking lot. Honestly, I often didn’t know who I would be talking to from one minute to the next. Part of that had to do with her fluctuating serotonin levels. With a NET cancer patient, you can’t always be sure where the emotions come from. It complicates everything. But she also had the very real depression that goes with dealing with a fatal illness, especially in its late stages.

Roots and complications

For either individual, the illness shatters all the plans you’ve made together. It destroys all your hopes and dreams for the future. If all that didn’t depress you, outsiders would question your sanity or your commitment to each other.

It complicates everything.

Some people self-medicate under these circumstances. Jane and I, never heavy drinkers in anyone’s mind, essentially stopped drinking all together after her prognosis became clear. We both knew alcohol for the depressant it is. It would only make things worse. We both knew we needed clear heads for what we faced–and that any drug–even something prescribed–would hurt our ability to function rationally when we needed to.

Stage 5: Accepting death

Eventually, the patient accepts the reality of their own death. I suspect they get there earlier than caregivers do. Part of that is the need for the caregiver to stay positive no matter how long the odds are. I even managed to put a positive spin on telling Jane we were out of options and that in the morning we would take her off all the machines that were helping keep her alive. I think she was annoyed that she woke up for us to tell her what she already knew.

 It would only make things worse.

Caregivers need to stay aware of when the patient reaches the point of acceptance, even if the caregiver hasn’t arrived there yet. Patient acceptance creates subtle changes in the dynamic between patient and caregiver. You have to be able o look at the big picture in terms of what you know that they may not in terms of options and where they are in their care. But their needs and wishes need to guide you. The two things can create a real tension between you.

The end

I screwed this up. Jane told me two nights before she died that, despite her condition, she wanted to go home. I knew she was frustrated with the pace of her recovery. I knew she was tired of bed pans and feeding tubes and having others change her bedclothes. And I thought that was all this was. We’d been here before.

Caregivers need to stay aware…

But she could feel the end coming in ways I could not. She wanted to die at home, in her own bed, in our own room. By the time I knew what was going on, it was too late for her to do anything but die in that hospital bed. On the other hand, she might have lingered longer at home than there–and she wanted life over.

Lessons from the stages

The lesson for today, then, is this: Pay attention, both to what you and the patient are feeling at any given moment. Listen to what they are saying and what they are not saying. Know that you are not necessarily going to be in the same emotional stage at any given time. You need to give that due consideration in whatever you do.

…she wanted to go home…

My last, best, advice on this topic is always act out of love. Then, even if you make mistakes, you’ll have a better shot at living with yourself afterward. It still won’t be easy–but it’s all that has kept me even remotely sane since.

No stage of this process is simple black and white. The shadows overlap into shades of gray that may or may not be dominated by the bright emotion of the moment.
No stage of this process is simple black and white. The shadows overlap into shades of gray that may or may not be dominated by the bright emotion of the moment.

Attitude contagious, so stay positive–Advice Part 3

awareness, Caregiving, Grief

The power of positivity

Studies have shown patients with a positive attitude do better in the longterm than patients at the same stage with a negative attitude. While the patient plays a large part in that, the task of nurturing and maintaining that attitude often falls squarely on the lay caregiver.

…the sickness and death part.

Outside of a hospital or nursing home setting, no one sees more of the patient than the spouse. If your attitude is negative, their attitude will rapidly decline. So no matter what, the caregiver has to remain positive. No matter what the news, we have to find a way to turn it into a positive–or at least keep smiling in their presence.

On the rollercoaster

This is not easy. After Jane and I first met with her Dana-Farber oncologist, we were very happy. Jane and Jen had hit it off immediately. They’d given her the first shot of Octreotide and she felt hungry on the way home. She’d been able to eat without pain for the first time in months. We had every reason to believe Jane would have a reasonable quality of life for at least a couple of years. And given the pace of medical advancement, two years might well mean something new to buy her more time.

…the caregiver has to remain positive.

A week later, we got the results of the scans of her heart. Both the valves on the right side of her heart were leaking. They were causing the swelling in her legs and abdomen. The serotonin created by the tumors in her liver had fried those valves. The prognosis destroyed all the good feelings of the previous week.

Shattered attitude

Jane was convinced those results represented “Game Over.” The cardiologist had said otherwise, but that didn’t matter. Jane’s positive attitude crumbled. My own mind was reeling. We’d gone from good chance to barely fighting chance in seven days. For the first time in many years, we had an argument about something other than the real issue we had to deal with.

This is not easy.

I ordered the wrong hamburger. I did it. I admit it. I hadn’t understood what she wanted and thought I did. My mind was as wrapped up in pain as hers. I’d spent the previous hour trying to ignore what I felt so I could buck her up. My brain seized up. Now, she wanted  divorce because I wasn’t listening.

Shared attitude repair

We came down off that ledge as we realized how scared we both felt. We both knew she still had a fighting chance, but the odds no longer felt in our favor. We both knew we could improve those odds if she could just stay positive. My job was to help her do that. That meant I had to turn down my fear so I could hear what she said and felt. She was terrified that I would desert her. She saw me angry only twice after that–and I wasn’t angry at her in either instance.

Jane’s positive attitude crumbled.

I did sometimes get frustrated and angry with her. But I made sure she never saw that. Over time, I became better and better at separating Jane from her cancer, in both my mind and my emotions. But it required a constant effort. Lack of sleep and constant worry didn’t help. Self-care, however, is a subject for another day.

Maintaining independence

Maintaining your own positive attitude–or at least the illusion of it–isn’t easy. You have to smile even when you are hurting so badly you want to scream. And it has to be a real smile that reaches your eyes.

…we realized how scared we both felt.

But that isn’t enough. Any cancer–any debilitating illness or injury–requires finding a way to let the patient maintain their independence as long as possible. Jane’s world shrank a little every day. We liked to go for walks, so we drove to a flat area and walked every day for as far as she could manage. We shared all the household chores, so I put off taking them over as much as I could. We did all the shopping together, and I kept taking her with me until she told me she just couldn’t do it anymore.

Into darkness

And every time she had to take a step back, I had to find a way to put a positive spin on it. Once they replaced the valves in her heart, I’d tell her, she’d walk again, do chores again, go shopping again. I reminded her we were partners–and that she would be doing the same for me when I got sick. In all of it was the promise that she would  be well again. In my head, I might have had doubts, but those doubts never made it to my heart–or to my face.

Jane’s world shrank a little every day.

Jane was still unconscious when they let me into see her after her heart surgery. They warned me what to expect when I saw her. But nothing can really prepare you for the dead white complexion or all the wires and tubes running in and out of the body. Yet even then, I knew I had to be positive and upbeat. A person in a coma can hear what is going on at a subconscious level. I talked to her, told her I loved her, held her hand. Then the nurse told me it was time for me to go get some sleep.

Positive unto death and beyond

I made sure I was there the next morning well before the first time her eyes opened. And I did everything I could to stay positive for her until her last breath. I walked her through three comas, talking to her and holding her hand. When she died I was telling the nurse the story of Jane’s life and the powerful, positive influence she she’d had on so many students’ lives.

A person in a coma can hear…

Even after her last breath, I tried to keep thinking and acting in a positive way. I don’t know how long after she was pronounced dead she was still aware of what was going on around her. I wanted her to know love even then.

The hand we’re dealt

The person taking care of someone with a fatal disease faces an endless rollercoaster ride of emotions. And those emotions belong not only to you, but to the patient as well. To a large extent, you end up putting your emotions on hold at times. That has dangers of its own that may require professional help when the ordeal ends. It has taken a long time for me to begin to feel anything approaching normal again. Three years passed before I could really cry again–and only now does it happen the way people would expect it should have after Jane died.

I wanted her to know love even then.

Rule #3: Do everything you can to keep the patient positive, even when it means never letting them see you sweat. Don’t count the cost until the dealing’s done. If you understand accept the marriage vows, this is the sickness and death part–and the love and cherish part.

Even now, nearly six years after Jane's death, I try to maintain a positive attitude. Jane may be gone, but there are patients who need to maintain their positive attitude as the fight NET cancer.
Even now, nearly six years after Jane’s death, I try to maintain a positive attitude. Jane may be gone, but there are patients who need to maintain their positive attitude as they fight NET cancer.

Knowledge matters to caregiver–Advice Part 2

awareness, Caregiving

Gathering knowledge

Some patients want to know everything they can about the disease they are facing. They cruise the internet, join support groups, pepper their doctors with questions. Others don’t want to know anything. Part of that may be denial. Part of it may be fear. And part of it may spring from the knowledge of how poor information garnered from the internet can be.

A NET cancer diagnosis changes everything…

Regardless how the patient feels about information, caregivers need as much knowledge about the disease as they can get. Caregivers often become the patient’s best advocate. That means we have to be able to carry on an intelligent and informed discussion with medical staff at every level. Sometimes, that means understanding what a doctor is saying and not saying. Other times, it means educating people about the disease and drug interactions they may not have seen before. And sometimes it’s about helping the patient understand what is going on.

Knowledge for the advocate

For caregivers facing a rare disease like NET cancer, this is especially true. Unless you deal with a NET specialist, you will often likely have more knowledge of that illness than your doctor does. While Jane and I quickly fell into the hands of a NET specialist, none of the nurses in the cardiac ICU had ever heard of NET cancer before. They had a one page sheet designed to give them the background they needed, but I needed to fill in the gaps for them and, at times, the doctors on the floor.

Caregivers become the patient’s best advocate.

Six years after Jane’s death, most doctors still have never heard of NET cancer. Even many general oncologists have sketchy information at best. As Jane’s first oncologist said to us, “I’ve heard of carcinoid (NET) cancer, but I’ve never seen a case.” Her ego was small enough she had no hesitation in sending us to Dana-Farber where they had people who had more than heard of the disease before.

Dangers of ignorance

But that doesn’t always happen. Sometimes, the nearest specialist is a long plane ride away. Sometimes a doctor decides they can handle NET cancer if they just read enough. And sometimes, they think it works like any other cancer and decide they can cure it by traditional methods. So they set up a standard chemo or radiation regimen and move forward, not realizing those treatments do nothing for NET cancer.

…I needed to fill in the gaps…

Finding good information about NET cancer, while difficult, is better now than when Jane was diagnosed. For example, in 2010, the American Cancer Society had no real information on what they still call carcinoid cancer. Their failure to keep up with the name of the disease most now call NET cancer makes a search of their site more difficult than it needs to be–but at least they have information now.

Best of the best

The best, and most up-to-date, information for new patients comes from the Carcinoid Cancer Foundation. The oldest of the groups fighting NET cancer (founded in the late ’60s), they have extensive links not only to information on both basic and more advanced topics, they also provide a state-by-state listing of NET cancer specialists across the US. The NET Research Foundation also has good links for patients and caregivers.

But that doesn’t always happen.

Sometimes, however, the links on any of those sites prove daunting to a lay reader. We try to make things easier here, but the best site at talking in lay-friendly language is patient Ronny Allan’s Living with Neuroendocrine Cancer blog. Ronny has a real gift for putting the complex bits of NET cancer into language real people can follow effortlessly. He posts something new every few days. Sometimes, he talks about research. Others, he talks about his own experience. Both have value.

What patients think and feel

For caregivers trying to figure out how and what a patient thinks about, the latter pieces have great value. Even as well as Jane and I communicated, sometimes she baffled me. Sometimes, I knew I was talking to her cancer, not her. Other times–I’m still trying to decipher what she was thinking and feeling. Reading some of Ronny’s posts helps with that.

Ronny has a real gift…

The posts of other bloggers can help there as well. Understanding what a patient goes through–even at second-hand–can be a big help. There were things Jane simply would not talk about no matter how I approached them. And observation rarely does enough to explain the internal things a patient faces.

Power of knowledge

So critical piece of advice #2 boils down to this: Knowledge is power–and you need all the knowledge you can get. You can get some of that information by reading and some of that information by talking with the doctors who know something about the disease. The second of these is especially important because things are changing very quickly when it comes to our knowledge of NET cancer.

…I was talking to her cancer…

One of the online support groups, Dr. Liu’s Zebras, can help with that second part. They do an online Q&A with Dr. Eric Liu, a surgeon who specializes in NET cancer,  once a month. It’s private group–and you have to ask to join–but that piece alone gives membership great value. Another good group for this is NET Patients Sharing Knowledge & Experience. They are not a traditional support group, as they avoid posting anything that does not have a science knowledge or practical treatment experience piece to it. They are a forum for the latest information available on everything from the science to insurance coverage for treatments.

Keeping up with each other

But the most valuable pieces of information come from the patient you are supporting. We all like to think we know our spouses pretty well. But six years after Jane’s death, I’m still learning things about her I didn’t know. We tried to keep up with each other’s evolving thoughts and ideas. But conversation using words and body language moves slowly and can’t always keep up. Illness complicates things further, especially when the disease comes with embarrassing symptoms like NET cancer can.

…you need all the knowledge you can get.

I’ve written a post about the conversation every couple needs to have on a regular basis about severe illness, injury and death. But communication of every kind on every important topic becomes much more critical under these circumstances. A caregiver needs to really know the person on the other side of the equation to really do the job well. NET doctors say that when you’ve seen one case of NET cancer, you’ve seen one case. The same applies to being a caregiver. The better you know your either half, the better this is going to work.

Know your selves

All the medical information in the world won’t prove very helpful in your task if you don’t know your spouse and they don’t know you. A NET cancer diagnosis changes everything–and you need to talk about that together. And the patient, if they are going to trust you to make decisions when they can’t, needs to know you as well as you know them. Talk!

A caregiver needs to really know…

Do it by yourselves if you can, or get help if you need it, but talk about what you think and what you feel. It matters–both for now and for the future.

Walking with Jane works to build knowledge about NET cancer for a lay audience while attempting to help fund the research that will create new knowledge.
Walking with Jane works to build knowledge about NET cancer for a lay audience while attempting to help fund the research that will create new knowledge.

Advice from one caregiver to another–Part 1

awareness, Caregiving, Jane, NET Cancer Awareness Day/Month

(Editor’s Note: This is the first of a series of posts on practical advice for caregivers. It specifically applies to spouses dealing with NET cancer, but should be broadly applicable to anyone facing a longterm illness or injury. Keep in mind, however, that I am not a doctor, psychologist, or therapist of any kind. I’m talking here from my personal experience, nothing more. Don’t take this as gospel as your situation and what you experience may prove very different. I make no guaranties about the soundness of what I say here in your circumstances.) 

Some background

I come from a long line of caregivers. My grandmother often was not home when we came to visit. If an elderly neighbor needed longterm help, she took on the task, often moving in with them for weeks at a time. I never got to watch her with those people–I just knew that she did. But I often turn to that memory when I need advice.

People don’t know what we need…

And I am the oldest of six children. I’ve changed the diapers on all but two of them and taken responsibility for the actions of all of them at one time or another. So when Jane got sick, I thought I knew what to do. All of that helped, but it wasn’t enough.

Theory vs. practice

People have written books on caregiving. But frequently, those books focus on caring for aging parents, not a loved one as close as a spouse or a child. In addition, the writers sometimes work from theory rather than experience. They do the best they can with the knowledge they have, but sometimes the advice is too abstract to be useful.

…I thought I knew what to do.

And people dealing with critical illnesses, like NET cancer, often don’t have time to read and digest an entire book. The immediate needs of the patient constantly come first–leaving little time for much else. My purpose in this short series of articles is to give practical advice from my personal experience with my wife’s NET cancer.

Advice for the beginning

“He says it’s probably cancer,” my wife said as she got out of the car that warming July morning. I’d wanted to go to her doctor’s appointment with her, but she’d firmly rejected that notion. I think she feared my reaction when she got the news. He’d told her alone, then sent one of his staff in who had dealt with cancer to talk with her and hold her hand.

…those books focus on caring for aging parents…

Letting her go to that appointment by herself has haunted me ever since. I tell myself I should have insisted. But I also know she didn’t want to have to think about me and my reaction when she got that piece of news. She wanted space to digest that news by herself before dealing with anyone else–including me. But it was the last time I let her face a doctor alone.

Balancing act

Being a caregiver, for me, was a constant balancing act on multiple levels. Jane had times, especially at the beginning, when she needed time to process what she heard and experienced. She needed me to be quiet and let her think. Sometimes she needed to be alone to do that. She also needed times she could simply talk to me about things other than cancer. Sometimes she needed me to pretend nothing was wrong. And there were times she needed to be held. I tried to honor those needs, as well as the cancer.

‘He says it’s probably cancer.’

But reading Jane’s moods–even after 21 years of marriage–wasn’t always easy. The cancer made it even more difficult. Occasionally, she retreated into herself so completely that all facial expression and body language vanished. It bewildered me at times.

Seek professional advice on communicating

In talking with other caregivers since Jane’s death, I’ve come to realize all of this is pretty common. Not that that helps much. We rely on all kinds of cues when we communicate with those we love. We don’t react well when those cues suddenly vanish–and that creates tension in an already difficult situation.

It bewildered me…

Part of me thinks spouses facing a serious disease or injury should immediately be placed in counseling with a qualified therapist. Jane would never have agreed, even had I, or a doctor, suggested it. We were both very private and independent individuals. Bringing another person in would have invaded that in ways we both would have had trouble with.

Sharing facts and feelings

That doesn’t mean it wouldn’t have helped. In retrospect, had we looked for and found the right person, it might have made some things easier. Instead, we did what we so often did: relied on our mutual willingness to talk without boundaries between us. We were always good about talking about what really bothered us. Neither of us let the other hide behind false issues.

Jane would never have agreed…

I think the willingness to share feelings is a real key to being both a good caregiver and a good patient. If you can talk to each other without a third-party, fine. But very few people seem able–or eager–to do so. Key piece of advice #1: ask for help when you need it.

Best advice: ask for help

And you are going to need help. Lots of it. And that help will become increasingly more difficult to come by as the weeks turn to months and the months–particularly with NET cancer or any longterm illness–turn to years. People will be there in droves at the beginning. They will thin as time passes. At the end, only your real friends will still stand with you. Some of those still there may surprise you–as well as who is not.

…ask for help when you need it.

Regardless, people won’t know what you need until you ask. Jane had a real battle in the hospital the night before Thanksgiving. She’d come out of a coma the day before and lost her mind for a while. She was so bad, the doctors sent me to another place in the hospital for the night while they worked on her crashing blood pressure and hypoxia. I have no idea what happened that night. They never told me.

You don’t know until you ask

But when I came through the door the next morning, there was love in her eyes–and a determination to live for as long as she could. She was afraid, though. There is a tradition in her family you wake up for a short time before you die to say your final good-byes. She wanted to see her father and sister. They couldn’t drive to Boston. It was Thanksgiving Day.

…you are going to need help.

I called a friend who said he’d skip dinner with his family to bring them up. Another friend cancelled her dinner plans to come with them. I’d been uncomfortable asking. But they didn’t hesitate. They’d been waiting for that kind of call–but they needed me to say what we needed first.

What we think we know vs. reality

People don’t know what we need unless we tell them. That was one of the hardest things for me to understand. If we are married long enough, we often know what the other needs without asking. We get in the habit of thinking people know what we need. The truth is, we don’t always know, under these circumstances, even what our other half really needs at any given moment. And neither do they.

 I’d been uncomfortable asking.

Your friends will have even less clue how to help. You have to swallow your pride and ask. More often than not, they will surprise you in a positive way. But not always. Then you ask someone else. You don’t have time or energy for anything else.

Advice: Caregiving is not about doing something for someone else, it's about walking the path they are on with them.
Advice: Caregiving is not about doing something for someone else, it’s about walking the path they are on with them.

 

Quiet? Quiet? I wasn’t built for quiet

awareness, Grief, NET Cancer Awareness Day/Month

My day without NET

I had a quiet day yesterday. In the morning, a friend and I drove out to Cape Cod to see another friend inducted into the Hall of Fame of an organization he volunteers for. On the way out, we caught up on the little things going on in our lives. On the way back, we talked about another friend dealing with brain cancer. We are part of a group that gets him to his appointments and such.

…it didn’t matter what cancer took Jane.

After we parted, I went to a local mall to do some shopping. I felt tired, so I got a cup of coffee and sat at a quiet table and listened to the Christmas music. I watched families coming and going. Some went to visit a lonely Santa in the middle of the mall.

Time without memories

Jane and I used to walk there on cold winter mornings or hot summer days when walking outside was more than either of us wanted to do. But I didn’t think about that as I sat there. I drank my coffee and watched and listened. I wondered if this was what normal was like when you’re a widower on a quiet Saturday afternoon.

 I watched families coming and going.

After a while, I got up. I had some things I wanted to get. I bought a new charging wire for my phone so I could have one in the car and not have to remember to take the one from the house when I went out somewhere. Next, I bought a dietary supplement to help with the still-unexplained neuropathy in my feet. I went into an antique store and saw the price on a table I like had gone down another $10.

Quiet distractions

I saw a store I like has begun a going-out-of-business sale. I’m friendly with the manager and staff there. They told me they all had other jobs waiting for them with other companies after the store closes. But I will miss them. They’ve become a part of my limited social circle–and a part that lets me forget for a few minutes about Jane’s death because they never knew her.

I drank my coffee and watched and listened. 

I came home and ate and had a glass of wine. The phone rang and I spent two hours talking with an old friend in Canada. His wife seems to have fought off breast cancer. He gets a piece of what I’ve encountered: he knows the fear when you hear those words about someone you love. He lives in western Canada now, and we rarely get to talk.

A quiet awakening

He hung up to have dinner and I read for a bit. I did a little writing and checked to make sure nothing existed in my inbox I needed to deal with. Again, I thought, this must be what the world is like for a widower who has lost his wife to a “normal” disease. Yes, the house is too quiet and the rooms too empty. Maybe he walks on a Relay for Life team or does the Jimmy Fund Walk. But maybe his life is not consumed by cancer.

I came home and ate and had a glass of wine.

And then, I woke up this morning. I thought about all the people I know fighting to survive other types of cancer. I thought about a friend going in for a biopsy next month. I thought about the news I got Friday night that a former student had died of breast cancer last week. At that moment, I remembered who I am and the way I deal with things.

Grow where you’re planted

The truth: it didn’t matter what cancer took Jane. In a sense, it was better it was something rare that almost no one was doing much about. Breast cancer, pancreatic cancer, lung cancer, prostate cancer, all have legions of people working on them. NET cancer needed me–and, perhaps, I needed it.

…I remembered who I am…

Otherwise, I might be sipping coffee in a mall somewhere, watching other people go about their lives. It would be a quiet life–but not a very productive one.

Sometimes I need a quiet hour or two where I don't think about NET cancer. Working on a landscaping project, going on a trip, or sitting in a mall can sometimes create that space. And sometimes. I need that quiet more than others.
Sometimes I need a quiet hour or two where I don’t think about NET cancer. Working on a landscaping project, going on a trip, or sitting in a mall can sometimes create that space. And sometimes. I need that quiet more than others.

Challenge sometimes is just keeping up

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Marketing NETs, NET Cancer Awareness Day/Month

What this challenge is teaching me

I think I need some help. This challenge has reminded me how difficult–and how undermanned–our fight against NET cancer remains. I write pretty quickly, but each of these posts represents at least three hours of writing time. Then I spend another hour putting in links, break-heads, and pull quotes before posting it to various pages and support groups. And often, before I write, there is research that needs to be done.By the time even one of the shorter pieces is ready for your eyes, it has 4-5 hours of work in it. I’ll spend another hour or two fielding comments and thanking people for sharing pieces every day.

If you’re interested, let me know.

I needed to update this website this month, as well. In reviewing what we have, I realized that most of the information on the other pages here is over a year old. I need to find the time to look at more up-to-date videos and check to see which links to other pages still have value–or still work. And lists of foundations and blogs and cancer centers all need updated as well. Gradually, I’m beginning to understand why most foundations and organizations have at least one person–and often more–doing nothing but social media and website stuff.

The fundraising challenge

But maintaining this website and keeping up a social media presence are not all I have on my plate. Walking with Jane tries to average one fundraiser every month. Most of those require a press release for local media outlets. Most also require I design and print posters and get them up in local businesses. Many events require tickets get designed and printed as well. Money gets counted and taken to the bank. The bookkeeping required even for an organization as small as Walking with Jane, makes me crazy.

I needed to update this website this month…

Then, we do three mailings major mailings a year and three smaller ones. Our holiday mailing works purely to bring people up to speed on what we’ve done over the course of the year. The other two major mailings prospect for individual donations to our Jimmy Fund Walk effort. The smaller ones recruit crafters and others for our annual yard and craft sale–and sponsors for events like our Jimmy Fund Walk t-shirts and our miniature golf tournament. I craft every letter and every envelope gets stuffed by hand. More bookkeeping follows.

Other WWJ challenges

Next, we go prospecting for grants to help fund the awareness piece. Next year, we hope to send out copies of two pamphlets to every primary care doctor in New England about NET cancer. If we can find the funding, I’d like to reach every primary care doctor in the US and Canada. I’d go beyond that if I could find the money and someone to do the translations.

…we do three mailings major mailings a year…

Throw in Form 990, an annual board meeting, several craft fairs, a summer gathering for volunteers, and you begin to see the scope of the challenge on just the Walking with Jane front. But I have other NET cancer irons in the fire.

The Dana-Farber challenge

I also chair 3-in-3:The Campaign to Cure NET Cancer for the Dana-Farber Cancer Institute’s  Program in Neuroendocrine and Carcinoid Tumors. I meet with doctors and staff there once a month to plan and execute the various parts of that effort. That has included designing a presentation aimed at businesses, civic and fraternal organizations. We are also creating brochures and public relations materials. A series of podcasts may happen next year. We also look for other ways to raise awareness of NET cancer and the latest research.

…we go prospecting for grants…

That work also involves serving as group leader for the #cureNETcancernow group and captaining our NETwalkers Alliance team for the Boston Marathon Jimmy Fund Walk. Next year, I will also take on at least part of the Pan-Mass. Challenge as we try to start a Program-focussed team for that biking event. Fortunately,  some overlap exists there since much of the fundraising we do goes to support Walkers on our teams.

The training challenge

Of course the Walking–I do 26.2 miles every year–and now the biking, require year-round training at my age. I do more in the spring and summer than I do in fall and winter, but I try to get some vigorous exercise every day. In the summer, I try to do at least one 20 mile hike a week, leading into the Marathon Walk at the end of September.

I also chair 3-in-3…

I also try to spend some time every week talking individually with NET cancer patients and monitoring the various support groups. I try to read a few NET cancer blogs each week as well. And, of course, I have the scientific papers to wade through.

The life challenge

Meanwhile, I somehow find time to have something that looks like a life. I work on the landscaping, spend time in my garden, read what Jane used to call “mind-candy,” and take some photographs. I like to cook and bake my own bread. And I write things other than NET cancer posts and try to keep up with what is going on in the outside world.

…I do 26.2 miles every year…

So it’s no wonder I always feel like I’m running behind. I’m clearly trying to do too much. And yet, I can’t see any way to drop any of this. It all needs doing and most of the people I know who could help have equally daunting schedules in front of them. We all do what we can.

Can we get a little help here?

Now if you’d like to get involved with any of this stuff, I need whatever help I can get. Some people have written pieces about their experiences with various therapies. Others have sent me their crafts to take on the road to the various craft shows I attend. All the money from those goes to NET cancer research. I have friends who come in to stuff envelopes a couple of times a year.

I’m clearly trying to do too much.

Interested? Let me know.  You can reach me at walkingwithjane@gmail.com. As one of our ministers used to say, “Many hands make light work.”

We try to average one fundraiser every month. That is just one of the challenges involved in ou fight to fund NET cancer research.
We try to average one fundraiser every month. That is just one challenge involved in ou fight to fund NET cancer research.

Caregivers have different set of problems

awareness, Caregiving, Death, Grief, Jane, NET Cancer Awareness Day/Month

The weight of caregiving

We focus most of our energy–and rightly so–on the needs of patients. Their lives are at risk and we need to find ways to help them. We need treatments to ease their symptoms, slow the course of the disease and, ultimately, cure it. Many of us, when we hear the word caregivers, think of doctors and nurses and technicians–at least I always did until Jane got sick.

They are fighting for their lives.

But the bulk of the day-to-day care of someone with a chronic or lingering or debilitating illness falls on ordinary people. Lay caregivers get no specialized training. You simply wake up one morning and discover your entire world has changed. Suddenly, you need to learn the details of a disease you may have heard of but know nothing about. Sometimes, you draw a disease like NET cancer about which no one seems to know anything. You have to juggle a job while taking on all the chores a significant other either did or helped with–as well as your own.

The emotional and physical toll

In an instant, you become both the emotional and physical support of someone you care deeply about. Their pain becomes your pain. You bottle up your own pain and negative emotions because the last thing the person who is sick needs is to see what their illness is doing to those around them.

Lay caregivers get no specialized training.

People tell you to take care of yourself so you can keep helping the patient, but no one really tells you how to do that in a practical sense. And even when you figure out how, you feel guilty because the person you are caring for never gets a second off from their disease.  And sometimes you watch as every day the person you care for gets weaker and weaker–until you have to dress them and change their soiled underclothes and bathe them. It’s not that you mind the work, it’s how awful it is to watch someone you care for become an infant.

Personal impact

From the day of Jane’s diagnosis to the day of her death, I lost more than 20 pounds. Emotionally, I was–and still am–a mess. When I was with her, I was generally patient and gentle and kind. There were times, though, I failed. I carry the guilt of those times with me, even now, nearly six years after she died.

People tell you to take care of yourself…

When we were apart and I didn’t have to be perfect, I could fly off the handle at the slightest miscue. I was walking across the lawn one afternoon. I was buttoning up the outside of the house for the winter. My foot went into a hole. Every ounce of repressed anger came out in that instant. I couldn’t yell at Jane, couldn’t yell at her cancer–but I could pound my fist into the ground over and over again.

Outcomes

And if you get lucky, the person you love survives. They regain their strength and become someone similar to who they were before. They are not the same person–you don’t look death in the eye and return unchanged. But love abides because of what you’ve both been through. Neither of you is unchanged–and it makes you both stronger.

…I lost more than 20 pounds.

And if you are not lucky, you pick out a coffin and plan a funeral service. You choose a burial plot and a headstone. You put on a brave face and thank people for coming to the wake or the funeral service or the burial. And you cry yourself to sleep at night until you find a way to deal with the empty chair at the table that represents the void in your life.

Tears on the road to Boston

I’m still crying. The tears sneak up on me at the strangest moments. I drove to Boston late yesterday afternoon. I pulled into a rest area to check a phone call. I’ve stopped there before without incident–but suddenly I’m crying, remembering our last trip to Boston together the day before Jane’s surgery. We’d stopped there because Jane needed to go to the bathroom.

You put on a brave face…

I’ve done grief groups, had counseling, and I still get ambushed by grief like that. Nearly everyone I know has largely moved on from Jane’s death. For me, the numbness has just begun to wear off–and the real hurting has just begun. The pain is a good thing, though. It means the wound has healed enough to hurt.

The unanswered need

We have support groups for patients. We have support groups for grief. Caregivers lurk in both. Too often, they have nowhere else to turn for the solace and support they need. But a caregiver cannot really talk about what they experience in either place. We’re determined not to let patients know what we are feeling in our darker moments. They are fighting for their lives. And grief groups aren’t quite the right forum for that either. They are about the pain of loss, not the pain of having failed.

I’m still crying.

Support groups for caregivers do exist, but they are too few and too far between–and often focussed on a particular disease. NET cancer caregivers need such a group, but we are so scattered that getting together–other than online–is difficult. But we really do need such a group where we can let out hair down without inflicting our pain on the patients who are our loved ones.

On the surface, caregivers may appear serene when taking care of a loved one. that serenity comes at a price.
On the surface, caregivers may appear serene when taking care of a loved one. That serenity comes at a price.