As I approach my 14 year post transplant anniversary I am surprised to admit that all these years later I am still frequently reminded of all the good and bad that came from my cancer
Currently I am determined to focus on getting some medical solutions to some of my post cancer ailments; specifically sleep problems and pain. In my quest for enlightenment on these issues I came across the following article on The National Comprehensive Cancer Network website.
If, like myself, you occasionally or frequently struggle with post cancer feelings of isolation and frustration I encourage you to read further. The concept of Survivorship Groups is new to me and something I plan to explore, all these years later.
I will update you on my progress as I pursue solutions and understanding ...
I hope this article is as helpful to you as it was for me. It is so darn nice to be reminded that we are not alone in our journey...
| For Cancer Survivors, Normal Might Not Be So Normal |
The cancer journey can be a long, arduous one, and cancer survivors often end up with a lot of baggage when it’s over.
As a result, they usually cannot just pick up their lives and resume where they left off before the cancer began. Often, there are physical, emotional, cognitive, relationship, and financial issues that will create what experts call, a “new normal,” and cancer patients will need to learn to adjust before they can get on with their lives.
“Many patients with cancer have unrealistic expectations about their lives after cancer,” says Sloan Karver, MD, a palliative care physician atMoffitt Cancer Center. “They expect to bounce back to where they left off and return to their normal lives and jobs, but that is not always possible. Their bodies have been through major challenges, and they must give them time to heal.”
Dr. Karver says that most patients never totally recover from the physical and emotional effects of the cancer experience. “It leaves devastating marks on your being,” she says.
Elizabeth A. Davis, MD, a survivorship doctor at Massachusetts General Hospital Cancer Center recommends that people try to take time off during transition – the time after treatment –to better cope with the issues that people face. This is really when patients need time to recalibrate physical and emotional health, relationships, and expectations.
Transition: An Emotional Rollercoaster
After you were diagnosed with cancer, people rallied around you to help you defeat cancer. Doctors, nurses, technicians, dieticians, social workers, family, friends, and others all focused on helping the patient through arduous cancer treatments. However, that support system ends with the treatment.
More than 1 billion people are diagnosed with cancer each year, and there are nearly 12 million cancer survivors. There are just too many people with cancer for every patient to remain under the routine care of an oncologist once treatment ends. The oncologist will schedule regular follow-up visits: annually, every 6 months, maybe even every 3 months depending on the cancer, but your routine medical care reverts to the primary care physician when cancer treatment is finished.
It’s not surprising that you feel totally abandoned when treatment is over, and that support system moves on to fight the next patient’s cancer.
You might feel abandoned, alone, and out of sync with the rest of the world. You might feel that no one understands your cancer experience. This aloneness is similar to what a soldier feels when upon returning from battle. Not quite posttraumatic stress disorder, but a feeling that no one will understands what was just survived.
“When people are diagnosed with cancer, they are in shock. They might get depressed, but they rally, and at the end of treatment, when they go from being seen daily, weekly, or every few weeks to not being seen regularly, they suddenly feel alone and abandoned. There is an overwhelming feeling of aloneness.
“I think that is when many patients truly start emotionally processing what happened. And they mourn the loss of care,” Dr. Davis explains.
Adding to the loneliness is the notion that you are the only person in the world who feels this way after cancer treatment.
But you are not.
Just about everyone who has been treated for cancer goes through this transition to a new life after cancer. And it’s an emotional roller coaster, because all of the emotions are at full throttle: anger, anxiety, fear, depression, guilt, loneliness, sadness, etc.
You are embarking on a new cancer journey, and you will need to address the emotional issues, and physical and cognitive deficits during the transition before you can begin your life after cancer. Everyone carries baggage from the cancer treatment into this new life.
If the cancer center has a survivorship program, enroll. This program is like rehab after heart surgery. The specialists there help cancer survivors through the transition period. If your cancer center doesn’t have a survivorship program, be proactive about finding help. This article will give some ideas about where you can turn for that help.
First find a good primary care physician. You can return to the primary care doctor you had when you were diagnosed, but if you don’t feel comfortable with that doctor anymore, find a new one. Some people don’t connect with their primary care doctor after a cancer diagnosis, and it’s okay to find a new doctor. Find someone who works for you and will provide insurance referrals to the specialists you will need, such as physical and emotional therapists.
Emotional Issues
The transition period is full of emotional ups and downs. Understand that you are not alone, and seek out a new support system that can help you. Seek out help from physician specialists and therapists to help manage the emotional challenges you are facing.
Depression, anger and guilt are common. People often become angry during the transition period. Sometimes they lose their faith. They become depressed and sad, and they suffer survivor’s guilt: “I survived so I’m supposed to feel happy and grateful to be alive, but I don’t. What’s wrong with me?”
Don’t feel guilty. You are processing the terrible trauma you’ve been through. All of these feelings are normal. Unlike people who never had cancer, you know just how fragile the human body is and just how close death resides. This is an enormous emotional burden to carry.
Another common feeling is anxiety that the cancer will return or that you will never feel good again or happy again. These are common feelings and a mental health professional can help you work through them.
“A cancer patient has a heightened sense of awareness after they have gone through a cancer diagnosis and treatment. They are often worried about what various symptoms represent. Often, the primary care physician with the oncologist can tease out whether this is a separate condition or a result of cancer or cancer treatment,” says Dr. Karver.
Cancer treatment often causes long-term fatigue that heightens the patient’s emotional state.
“Fatigue is a huge issue even after treatment is over,” Dr. Karver says. “Many patients continue to suffer fatigue. They often take medications to control various symptoms, and these medications can cause fatigue.”
A good night’s sleep can help, according to Dr. Davis. Yet, she often finds that people are reluctant to take medications that might help with insomnia, or to seek help for the underlying cause of sleeplessness, such as depression, anxiety, and the side effects of cancer drugs.
But as a cancer survivor, you were willing to be treated with toxic therapies in order to save your life; why would you be reluctant to take medications that can help you live that life better? Why suffer emotionally? Dr. Davis will remind patients of the rigorous and debilitating treatments they received and will encourage them to take medication, if necessary, to help them sleep.
“Deal with your sleep first. People come in with sleep and fatigue complaints. Sometimes your emotional state will improve if you can improve your sleep,” she says.
Dr. Davis recommends multiple modalities, not just medication. Exercise is extremely important. If you can afford a personal trainer, get one. If you can get a referral for rehabilitation therapy, get one. If all you can do is go for a walk each day, go for a walk. You will feel better if you get up and move around. Take the dog for a walk. Take your kids to the park and play catch or Frisbee. Join a yoga class or a jazzercise class. Classes are good because you are with other people, so you are not alone. Join a pool and go swimming every day. Physical activity, especially done with other people, will make you feel better, and it can improve your overall health.
The most important thing to remember is that you are not alone. Find a cancer survivors support group and set up a new support system with people you trust that you talk to often. Don’t isolate yourself.
Feeling better after cancer is a process. Going through this process can empower you and return some sense of control over your life.
Physical Issues
There are many physical problems after cancer treatment. Cancer therapy has many side effects. Surgery can leave people disfigured, or they can suffer health problems, such as heart disease or infertility, years after treatment. Find out what problems lie ahead and be prepared.
Sexual dysfunction is a problem that many cancer patients face at some time, according to Dr. Davis. Sometimes patients just have no interest in sex anymore. Sometimes, they suffer painful intercourse, or men cannot achieve an erection. Doctors are reluctant to bring it up, especially if a patient is single or if the patient doesn’t mention it first. Patients are embarrassed to talk about it.
So, everyone keeps silent.
Not a good idea. Not all sexual dysfunction can be addressed, but some issues can be. So, bring it up if the doctors don’t ask you about it.
“Many people feel ashamed because they think they are the only ones who have this dysfunction. Also, they feel hopeless. There must not be any treatment because the doctor didn’t bring it up,” says Dr. Davis.
Some people suffer low-grade infections, fungal infections or shingles, or respiratory problems that just linger on. Others have rashes, headaches and/or neuropathy (neuropathic pain), or lymphadenopathy (swollen lymph nodes). There is a long list of physical problems. Your primary care doctor can help here. If you lost a limb or have a physical disability, get into rehab and find the specialist that can help you cope with your disability. Put yourself on a list for a service dog if you need help with daily activities.
Sometimes patients have unusual problems after cancer treatment, which might be dismissed because it is not a common side effect of the cancer or its treatment. Keep talking to your doctor until you figure it out.
Dr. Davis treated one patient who suffered a constant itch all over her body, but she had no rash. Dr. Davis realized that this was a type of neuropathy, and when she was given medication for neuropathic pain, the itching went away. It was an unusual symptom, but it was real … and it was treatable.
However, you won’t know what is treatable if you don’t ask about your symptoms.
Cognitive Issues
You would expect people with brain cancer to have cognitive problems. Problems with self-control, memory, inhibition, speech, attention deficits, etc. However, it’s not just brain cancer patients. Many cancer patients suffer cognitive deficits, especially memory loss and attention deficits.
Remember chemo brain? Unfortunately, chemo brain doesn’t always go away when chemotherapy is finished. A specialist can do testing to help separate a cognitive problem from a psychological one. Speech and language therapists can help some patients with memory and planning that have undergone chemotherapy and/or radiation. Some survivorship programs have cognitive rehab that helps people develop organizational skills to cope with these deficits.
Sometimes they go away, but it might take awhile.
Relationships
Relationships suffer after cancer treatment. Family, friends, even colleagues at work expect the patient to go back to “normal.” But your life will never be the old way again. Instead, there will be a “new normal.”
Your relationships with family and friends will likely change, and unfortunately you will need to work to accept that. Talk to a therapist about it. If you are in a relationship, perhaps a marriage counselor can help. If you are working and can afford it, Davis recommends taking some time off or reducing your hours for awhile until you can sort out your new life.
Pay attention to your physical and emotional symptoms and signals, and recognize that you are in transition. You might feel bad, but it will change.
You gave yourself time to fight cancer, now give yourself time to heal. Rely on people you can trust and build a new support system.
Reduce the intensity of your daily life and focus your energies on healing. Try acupuncture, yoga, exercise, therapy. If one modality doesn’t work for you, seek another.
Take control. It’s your life.
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