“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!
