By Pamela Tom | HPVANDME Founder

Many of us remember where we were when “911” happened, or when the country elected its first African American president. I will also never forget the day when I learned that my husband, Jeff, had cancer. It was the first time in my life that I didn’t know what to do. I didn’t know how to fix the problem. I didn’t know I had just been given a new job. And I had no idea how to become a HPV cancer support caregiver.

The Caregiver Job Description 

Responsibilities and Duties

• Arrange and calendar treatment schedule
• Provide transportation to medical appointments
• Work flexible hours and be on-call
• Be everything to everyone without asking for any help

Qualification and Skills

• Multitasker with excellent organizational skills
• Ability to cook, feed and bath the patient
• Skilled at having little sleep 
• Capable of continuing another full-time job simultaneously

Salary and Benefits 

• No sick days
• No vacation time
• Zero pay
• No extra compensation for extra emotions

If I sound less than upbeat and positive, I don’t mean to be. However, understanding the reality of being a caregiver may help new caregivers manage their journey. Above all, it’s ok to feel vulnerable when everything going on in your life is telling you to stay strong. 

You Start Tomorrow

Unlike with other jobs, the job of cancer support caregiver lands on your lap with no time to prepare. You begin immediately, whether you’re ready or not. Cancer treatment typically takes place in outpatient clinics; however during the rest of the day, the patient will likely require at-home care. The level of care predictably increases as treatment progresses. 

For example, HPV-related oropharyngeal patients will experience the cumulative side effects from radiation and chemotherapy. The patient becomes more sick, and weaker over time. 

My husband underwent seven weeks of simultaneous radiation and chemo. He started out doing pretty well; he even felt almost normal after the first couple of weeks. However by Week Three, he could no longer avoid the double dose effects of having electromagnetic and chemical poisons injected into his body. He had no energy. He looked really sick. 

By Week Five, we had to cancel a treatment appointment. On that particular day, Jeff just couldn’t allow another drop of the necessary venom to enter his body. Of course, he had to make up for that missed treatment eventually. 

Setting Expectations

We all forge ahead differently. Some of us will create a daily list of tasks; others will wake up every morning and somehow wing it as the day evolves. It’s all about setting expectations for the cancer patient, for your family, and for yourself. 

Don’t try to do everything alone. If you don’t have family or friends who can help support you, seek out a caregiver support group such as Imerman Angels. That’s where I met several “mentor angels” who shared their stories about what it was like for each of them to be a caregiver. 

“LaDeana” told me how her husband, B.G., could be a difficult patient because he didn’t want to admit vulnerability, that cancer had in any way “got” him. While that’s not an unusual reaction to cancer, his attitude made LaDeana’s role as a caregiver that much more challenging. LaDeana discovered the best way to handle her husband’s behavior: step away. She granted herself a “time out” that allowed her husband to address his frustrations and pain without taking them out on her. 

“Kristin” learned that her husband, Jeremy, had HPV tonsil cancer when she was already caring for her father who was battling non-HPV throat cancer. How do you be a caregiver to the two most important men in your life, at the same time? 

One day at a time. 

“I battled this with information, from knowing, from trying to be prepared,” says Kristin. She found solace and strength by staying informed. She talked to the doctors and made sure that she understood every detail of her husband’s and father’s cancer journeys. Often, patients may be too overwhelmed and in pain to hear what the doctor is saying. 

Caregiving for HPV Cancer Patients

The human papillomavirus, or HPV, is the most common STI in the US and certain strains may cause cancer: cervical, vulvar, anal, penile, vaginal, and throat. 

HPV-related oropharyngeal cancers that occur at the base of tongue/throat or tonsils are now the most common HPV cancer in the country, surpassing incidents of cervical cancer. It affects males and females, but mostly middle-age men. 

The treatment for HPV head and neck cancers may consist of robotic surgery, radiation, and chemotherapy. The targeted radiation at the patient’s throat and oral cavity often makes it impossible to consume solid foods. When the patient is required to have a feeding tube inserted, the caregiver must change the bags of liquid food; flush and clean the feeding tube. The caregiver also witnesses his or her loved one suffering from the agony of not being able to eat normally. 

I remember opening those cans of liquid food every day and having to force Jeff to “consume” enough nutrition even though he was too ill to want to “eat”. He lost 50 pounds. By the end of the ordeal, the smell of that thick, milky gray formula turned my own stomach. 

I also remember having to monitor his private pharmacy of medications. Some drugs made him feel less nauseous; he had to consume other drugs to combat the side effects of the anti-nausea medicine. 

My sister gave me a fancy juicer machine to make nutritional fruit and vegetable juice (before we switched him to the feeding tube). Jeff couldn’t stomach any of them. 

After treatment, I sought to cook foods that he could eat with now altered taste buds. For instance, after the first bite of ice cream, subsequent spoonfuls simply tasted cold. He could not taste the sweetness. 

And forget about foods that are not “wet.” 

The radiation destroyed Jeff’s saliva glands as well. Even today, he requires extra sauce or gravy on foods, extra mayonnaise and mustard or a sandwich, and we never go anywhere without several full water bottles.

When HPVANDME interviewed the wives and caregivers of two HPV throat cancer patients, we saw how similar diagnoses produce very different experiences and outcomes. Wendy didn’t have any help during her husband Glen’s four-year battle against HPV-positive squamous cell carcinoma. He died at age 63. On the other hand, when Ronni‘s husband, Jason, was treated for HPV tonsil cancer, she relied on a full support system of family and friends. Jason recovered and is now an HPV cancer patient advocate. 

International HPV Awareness Day is March 4

In 2018, the International Papillomavirus Society, or IPVS, launched International HPV Awareness Day as a global public health campaign. This year’s campaign theme is “One Less Worry.” 

“By sharing information we aim to empower people to take action to reduce the risk of HPV. By encouraging conversations about HPV we aim to address the stigma that can act as a barrier and increase the risks to us all . By communicating clearly: We CAN eliminate HPV and create one less worry for our world,” says the campaign organizers.

HPVANDME is one of over 100 global partners supporting the annual campaign.

Learn more about HPV cancer prevention including how the HPV vaccine helps prevent six HPV cancers. Doctors say increasing vaccination rates in young people can virtually eliminate HPV cancers in a few generations. When the tide turns, the need for HPV cancer patient caregivers will naturally decrease.

Ask for Help

Each caregiver experience is unique and that’s why it’s so important to learn from other caregivers who may help you set your own expectations—and help you give yourself a break when you fall short. 

After you set expectations, be sure to communicate them to the patient and others, including your children and employer. And if you are pressured into being a caregiver and don’t think that you want or can handle that responsibility, seek help from the patient’s social worker team or a caregiver support group. They may help you learn how to delegate tasks, find caregiver helpers, or whether you need to find another caregiver all together.

Resources

Imerman Angels – Its mission is “to provide comfort and understanding for all cancer fighters, survivors, previvors and caregivers through a personalized, one-on-one connection with someone who has been there.”

National Cancer Institute – Caring for the Caregiver