For the uninitiated, a favorable cancer prognosis seems to follow a challenging but relatively linear path that ends in an upward trend: diagnosis, treatment, elimination, champagne.
What is there not to celebrate? The treatment is over! You are cancer free! Everything is great! You can now return to your regular programming.
You're excited, right?
For most people who complete cancer treatment, the answer is: it's complicated. And confusing, because almost nobody talks about the chaotic reality of "afterwards".
These are some of the unspoken truths about life after cancer:
The end of treatment is a reason to celebrate and a time of uncertainty and fear.
The end of daily, weekly, or monthly visits to the doctor may make patients feel that their safety net has been removed.
The emotional support patients receive from their fellow human beings can shrink – sometimes dramatically – once their cancer has "disappeared".
Surgery, chemotherapy, and radiation may have ended, but treatment has not. Patients still need regular scans and, in some cases, pharmaceutical maintenance programs.
Pain, neuropathy, fatigue, mental fog, physical limitations and other side effects often persist long after treatment is complete.
After months or years of focusing on cancer, survivors can struggle with a sudden loss of structure and purpose.
Physically or metaphorically, cancer patients have lost parts of themselves.
Scars, hair loss, skin changes, flatulence, weight gain or loss, medical devices such as intravenous openings or ostomy bags and other changes in appearance often have a negative effect on the body image.
The physical and psychological effects of the treatment can lead to permanent intimacy problems, both physically and emotionally.
A professional clinical advisor can be the person who does not get tired of hearing about the cancer experience of the individual and helps the individual to understand this experience and to find its new "normalcy".
Search for firm ground
Cancer patients are often surprised at their response to the last day of treatment, says licensed professional clinical advisor Cheryl Fisher, a private practitioner in Annapolis, Maryland, who specializes in counseling cancer patients. Most cancer clinics have some sort of ceremony – a bell to ring or a certificate to present – so there is a feeling of celebration, she notes.
But then? Fisher says these patients often have a sudden realization: "Oh crap. Now I am alone. "
The medical support group that is treated week after week, month after month is suddenly gone, notes Fisher, a member of the American Counseling Association. Yes, the doctors and nurses are still available, but these soothing, regularly scheduled visits, which give a constant sense of forward momentum, are over, leaving patients unsure of what's next and whether they're really okay.
During treatment, patients are essentially carried away and focus on navigating the tasks ahead of them, Fisher explains. "What do I do next? What do I do next? OK, tell me, what do I do next?" "You almost go through the movements with the autopilot."
And then the carousel suddenly stops and the survivors stop and are still mentally confused by everything they have been through. "Your body, your mind, your neurology are still trying to catch up with everything that has happened," says Fisher. "You're still processing it."
ACA member Mary Kathryn Rodrigue, a licensed professional counselor who specializes in psychosocial oncology with a focus on young adults, agrees. Many of the clients who come to their practice after completing cancer treatment are just beginning to process their grief because they feel compelled to put everything else – financial concerns, professional concerns, fertility issues, relationship issues – in the background while treatment.
Rodrigue, founder and co-owner of the wellness studio in Baton Rouge and Covington, Louisiana, uses the functional evaluation of cancer therapy in general, a scale that measures physical, social / family, emotional and functional well-being to meet the needs of their customers determine. In addition, she manages standard ratings for depression and anxiety.
Many of their customers are concerned about "what if" scenarios. Rodrigue describes exploring these fears as "peeling onion layers". Follow-up tests are a common source of anxiety. "I have a scan in front of me. … What if the doctor doesn't call right away? How will I deal with it? "
Rodrigue often uses journaling with her customers and says that "worry journals" can be very effective. "It enables you to make that concern, which feels like a ticker tape, tangible and put it somewhere else," she says. Customers can also use their diaries to play the worst-case scenario. They introduce themselves, a scan shows signs of cancer, takes stock of their support systems and tries to formulate a plan. Investigating this fear and planning possible responses prevent customers from "burning back" their fears and getting them going, says Rodrigue.
She also teaches customers about mindfulness and grounding techniques such as environmental awareness – by sensing the temperature of a room, focusing on the feeling of clothing on the skin, and, for example, identifying the textures and tastes of the foods they eat.
Fisher, who is also director of the online master's degree in clinical counseling at the California School of Professional Psychology at Alliant International University, says that scanning anxiety is a constant concern for many of her clients, some of which are scanned every three months . When the first scan is clear again, according to Fisher, customers “just test their toes on the water and try to get an appearance of this new normal. How does it look? "But as the next scan time approaches, their anxiety increases again. Fisher helps customers develop tools to cope with their fears without affecting the process of reintegration into life.
She remembers a client whose scans showed a small recurrence of cancer in the lungs. "There is this tiny, tiny spot. It doesn't grow quickly. You won't actually do any surgery. You will only see it," explains Fisher. And so the client had to make peace with the unknown.
Fisher asked the client what she felt.
"I'm afraid," said the customer.
"OK, great," Fisher replied. "Confirm that you are afraid. Call it, sit down, talk to him [through journaling or self-talk]. What is fear about? What is the greatest aspect of fear? What does it tell you, does it teach you? How would you ask to live your life differently now, with the unknown, what would it look like? "
The client was expecting the birth of her second grandson and feared that she would not experience it. So Fisher asked the woman to think about how her plans could be changed knowing that there was no guarantee that she would be in the child's life. The client decided to make some preparations for the birth of the child. She had previously postponed her plans, paralyzed by fear of the unknown. As it turned out, the woman's follow-up scan showed no signs of growth.
"What we do with fear," says Fisher, "is fear to say," OK, I know you will travel with me. I know you will be there, but you cannot lead it. You cannot be the leader of my life. What I'm going to do is … pull you out regularly. We'll have a conversation. I will allow myself to experience you, cry, be angry, write diary and work on it. Then I'll put you back in and tell you [that] that you have to go next to me, not in front of me. "
Fisher emphasizes that this deliberate practice enables cancer-affected clients to decide what is essential – the non-negotiable things they want to experience, no matter what.
Everything you can't leave behind
When customers learn to negotiate their fears and deal with life again, they are forced to reassess them. Everything. But especially the people in their lives.
"Your whole world has turned upside down," Fisher says. Customers' perspectives are changed – sometimes radically – by what they have been through. "Now you're really evaluating people, places, things and how they serve you in your life," she explains. When assessing relationships, clients strive to be certain that the people around them are able to evolve while understanding and respecting the radical changes in life that cancer has brought about.
Rodrigue was impressed by a presentation she attended in 2019 that dealt with issues affecting young women with breast cancer. She described three different categories of relationships and the need – especially in times of significant change – to take stock of people in their lives and lives where they fit. The first category includes the closest relationships – those that are based on unconditional love and in which people willingly make sacrifices for one another. The speaker stressed that it was important not to have too many of these relationships because it was easy to spread too thin. The second category consists of mutual relationships – people who do things with you and for you, says Rodrigue. And the third category of relationships by default includes people in your life – family members, friends you have known for a long time, people you have been brought together with through a crisis or project, etc.
Major changes in life and shocks draw attention to these relationships, Rodrigue says, explaining that it is not uncommon for people who have recently had cancer treatment to be afraid of their relationships. She encourages customers to ask themselves several questions: What drives their fear? How do relationships not live up to their expectations? Is there no reciprocity? A tendency to be unavailable or not supportive? Perhaps a previously unnoticed pattern of negative and undermined comments and behaviors? Is the pattern a new development caused by a change in friendship dynamics, or was the relationship never based on equality?
In many ways, cancer survivors have an even greater need for support after completing treatment. Not knowing who to rely on, or being cheated by someone who seemed like a trusted ally, can severely affect customers' emotional and physical health. Creating a relationship inventory that helps customers understand the need to re-create or even release a relationship can reduce anxiety and help eliminate unnecessary conflict.
Both Rodrigue and Fisher say that another significant challenge for cancer survivors in their relationships is that everyone else – the patient – must be "OK". But they are not. At least not all the time.
This inability of others to see the person as less "good as new" sometimes comes from a place of selfishness or ignorance, but it can also come from fear, says Fisher. Those who are close to the client have gone through months or even years to fear the loss of their loved one, and are keen to believe that the person will be fine, she explains.
And cancer survivors often want to reduce this burden to say that they are fine even when they are not, Fisher continues. "We are often still in this protective role in which we say:" Yes, yes. I'm fine. I'm fine "instead of saying," Do you know what? I could use another weekend ”or“ I don't know if I can now take on my whole life in one fell swoop. “… Well, now it is, OK, in a nutshell, ready, go. It is too much. It’s overwhelming. "
Consultants have to intervene here and educate their clients. Fisher tells her customers that their A-game doesn't look the same anymore. that there is no "back to normal" – it is inevitable a new normal; and that it takes time to find a safe stand on the way forward. People will want to assume that the person who has had cancer treatment is doing well. So it's up to that person to set limits, let others know when they need to be free, or say, "I can't deal with your bull, Fisher claims."
Sometimes the third party needs to be involved to help customers manage the expectations of others. Fisher had a client who survived cancer and was a widow. The woman's daughter would come to visit the city and it would be difficult for her to hear that her mother had bad days. During one of these visits, the client asked Fisher if she could take her daughter to a counseling session so that they could work together on expectations.
“There the daughter could of course collapse and say: 'I am afraid. I can't stand seeing Mom vulnerable. I have to see her as a super mom, ”says Fisher. "Mom cries and says:" I would like to be this great mother, but this is not my M.O. no more. I learned that trying to be a super mom actually killed me. You must honestly know that some days are great, other days are not. I need to have the ability to do what I need to do on those not so great days without worrying about getting you upset. "
The elephant in the room
Life after cancer treatment means re-engaging not only in Platonic but also in intimate relationships – when the survivor is ready, Fisher says. Again, it's complicated.
Survivors are scarred and often feel uncomfortable in their bodies, explains Rodrigue. It is difficult to regain your body if part of it is missing, especially in cases with mastectomies, it continues. Survivors need a safe psychological situation in which they can express their rawness and sadness at the loss.
Fisher states that breast cancer survivors with hormone-positive cancer face an additional complication – hormone-blocking drugs such as tamoxifen or aromatase inhibitors. Tamoxifen usually forces women into the early menopause and related physical aspects such as hot flashes, dryness and discomfort.
Many survivors are not even ready to consider a sexual relationship at this point, but if they have a partner, the issue will be addressed sooner rather than later, says Fisher. For women who don't have a partner but are interested in a sexual relationship, the process of finding one can feel more complicated. Fisher quotes a customer as an example: "The next time I'm sexually intimate with someone, I need to feel safe enough to tell my story."
"It really takes trust to expose the scars, talk about the scars, and relate to someone in the scars," says Fisher.
Too often, survivors struggle to restore their sexuality alone. Even clinicians are often reluctant to deal with post-cancer sexuality, Fisher says. She claims that counselors should ask these clients about their body image and identity as sensual and sexual persons.
"Talk to me about what you're experiencing. What are your fears? What should it look like?" Questions like these will open the door and allow customers to talk about their sexuality, Fisher says.
Consultants should also ensure that they are up to date, knowledgeable, and knowledgeable about the consequences of cancer treatment and reintegration into sensual, sexual, and body image components, says Fisher. "Sexologists, sex therapists are excellent resources," she suggests. “The interesting thing is finding them is sometimes a challenge. [Find] find out who is nearby so you can recommend customers. Then, hey, you know what? Normalization [with clients]. It is really normal. "
She also recommends that counselors consult physiotherapists who are familiar with pelvic rehabilitation. "They teach you from A to Z about what could potentially affect both physical and sexual functioning."
Again, it's about bringing clients back in touch with their "new bodies" and accepting the changes – not only in terms of sexuality, but also in terms of redefining their own beauty, Fisher says. She believes that yoga and breathing work are particularly effective ways for clients to reconnect with bodies that they may feel cheated on.
Rodrigue has heard from many customers that they no longer feel beautiful or even functional. It was so common that when it was time for her to open her practice, she made a special request to the interior designer – a friend and former Project Runway winner. "Everything is made from reused materials, things that people threw away," she says. Rodrigue encourages its customers to see themselves in the materials – not broken, but redone with a new purpose.
Fisher sees the healing process in a similar way. "When is it over? I don't think it's ever over, ”she says. "I think you just come to the other side and it has repositioned and informed your life.… Just because the treatment has ended does not mean that the processing and healing have ended."
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Laurie Meyers is a senior writer for Counseling Today. She was diagnosed with breast cancer in February 2019 and she ended active treatment last January. Her discovery inspired that article that there is no survival guide for life after cancer. Contact her at [email protected].
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It should not be assumed that opinions and statements in articles that appear on CT Online reflect the opinions of the publishers or guidelines of the American Counseling Association.
