Archive for the ‘Caregiver Spotlights’ Category
I Would Never Want to Be Anywhere Else On Earth
Caretaking Through Testicular Cancer: A Mother’s Story
At 19, my son’s stomachache led to a CT on his abdomen, which led to his Stage IIIB testicular cancer diagnosis. Ian hoped his story would help others. I share these pieces of Ian’s story with the same hope.
Cancer Diagnosis / The Worst Phone Call Ever
The doctor called with the CT report. As he elaborated the details, I fell to my knees. I suddenly couldn’t breath. I felt as if the news had sucked the life out of me. As the doctor continued I clutched the arm of a chair and tried to stand but I had become too weak with shock. I could not believe what he was saying.
As I sobbed and gasped for breath, I crawled along the floor with the phone in one hand, interupting the doctor, “No! No! Not Ian! No! There’s a mistake! Not my son! No! No! It can’t be true!”
But it was true, and our lives changed in that very moment.
Cancer Treatment / Change in Personality
Ian had loved being in the center of the action. He made any event seem like a party with his funny antics and outgoing nature. Once Ian started cancer treatment he often was not in the mood for conversation. He usually didn’t want sound around him at all. He was miserable with nausea nearly every day for three months, which made it difficult for him to tolerate noise, light, and motion. He tried to cope by asking us to silence our cell phones, keep his room dark, and move about slowly and quietly in our house or his hospital room.
Cancer Care / Difficulty Sleeping
Ian felt grateful for doctors, nurses, and aides who worked quietly in his hospital room. He never slept well. He appreciated low voices and minimal noise from doors closing and general clatter because it all woke him from his light sleep. He told me that sound and light seemed more intense than normal.
Cancer Treatment / Paranoia
The pain medications caused Ian to feel paranoid, so he wanted me always near him. He sometimes woke startled from a light sleep, grasping my hand and looking at me as he tried to figure out where he was and if everything was okay.
Cancer Care / Cancer Treatment / Write it Down
I kept a treatment journal for Ian every day– details from conversations with every doctor and nurse, medical procedures and medications’ purpose and side effects. This helped us keep track of answered questions, review and track progress, and reference our notes and questions during appointments with Ian’s doctors. Ian tried to keep a journal but he only wrote two entries.
Cancer Care / Stay Prepared
We kept an extra pillow and blanket in the car for driving to his appointments, and a plastic bag in case he needed to throw up. I always carried items for Ian in my purse— bottled water, earplugs, his music and headphones, hard candy, dried fruit, chewing gum, and occasionally a package of Pop Tarts, one of the few foods he could eat without throwing up. We kept his duffle bag ready with clean clothes. There were several times we were instructed to take him to the Emergency Room where he would sometimes be admitted to the hospital. We never knew what would happen, so we tried to prepare for anything.
Cancer Caregiver / Be Organized
At home, Ian’s 12 medications were in his bedroom with doctor’s instructions next to them, and a thermometer, hand sanitizer, and doctor’s emergency numbers. I logged Ian’s temperature from 2-4 times each day and rated his symptoms and side effects as they did in the hospital. Persistent chest pain, headache, signs of internal bleeding, or slight fever meant a trip to the ER.
Cancer Care / Keep Comfort Items Nearby
Cotton swabs— irritation from brain radiation treatments made Ian’s ears itch.
Trash basket near the bed— Ian sometimes could not make it to the bathroom to throw up.
Dried fruit snacks, Lifesavers candy, chewing gum to help fend off nausea or bad taste in mouth.
Extra pillows and blankets for Ian. I also kept a pallet of blankets for me to sleep near Ian.
Favorite personal pillow and blanket for hospital stays. Ian said it felt better to have something from home with him.
Warm or cool washcloth to place over eyes or forehead— soothing for stress, anxiety, nausea, headache.
Quality Aloe Vera gel to soothe dry skin from radiation.
Ice pack to soothe headache and radiation burn.
Gentle peroxide mouth rinse for mouth sores caused by chemotherapy.
Soft toothbrush for sensitive gums.
Box of Tissues— Ian sometimes had nosebleeds caused by chemotherapy.
A pillow under each knee— to ease pressure on lower back. Ian’s lower back and hips were painful from the neupogen injections and the large tumor in his stomach that pressed on his back.
Heated blankets and an extra pillow during treatment at the cancer center helped Ian relax.
Loose-fitting clothes and house slippers for hospital stays.
Stretch arms and legs each day, using isometrics when possible. Sometimes Ian was too weak to get out of bed, so my husband, Mark would lift and stretch Ian’s arms and legs for him, and sit him up to stretch his back. Ian said it felt good.
What to Say to a Cancer Patient / Cancer Patients are People, Too
Ian appreciated the way his nurses spoke to him as a friend instead of a patient. If he had questions about his health or treatment, they answered him. But if he didn’t ask, they talked to him about his life, his interests, not his cancer. Ian appreciated that more than any of them may know. He also appreciated a nurse who was skilled with a needle —whether starting IV’s, accessing his port catheter, drawing blood, or giving injections. Ian’s doctors also took time to listen to Ian’s concerns and get to know him as a person. Good oncology doctors and nurses do make a difference in their patient’s lives, even if their patients don’t live to tell them.
It bothered Ian when friends and family questioned him about his cancer or what chemo and radiation felt like. Ian lamented, “There is no way they could ever understand this unless they have to go through it. There’s no way I can explain it to them. I wish they would stop asking me.”
Cancer Palliative Care
When Ian was admitted to the hospital for the last time, he was so very sick. He needed help moving around, walking to the bathroom, or turning over in his bed. He couldn’t eat. I held his mug to help him drink water. When he couldn’t have water, I placed a sponge swab in his hand, wrapped his fingers around it, helped him dip the swab into ice water, and guided his hand to his mouth to quench his thirst. I held the waste basket for him as he vomited or coughed up blood. I pulled the blanket over him when he was too weak to do it for himself.
In the days when testicular cancer was taking him from us, I washed his face, hands, legs and feet with a warm washcloth every day. I often swabbed his mouth with a cool damp sponge swab, and smoothed lip balm on his lips so his skin wouldn’t become dry and cracked. I held his hand, and I kissed the tears that leaked from his eyes as he lay too sedated to respond.
Cancer Caregiver / Be Quietly Present
Of all the ways we tried to help Ian fight his cancer battle, one thing made an impression on me more than anything else— how Ian valued my being quietly present with him when he felt his worst. Ian taught me that it isn’t necessary to say anything at all. The best thing to do is be present and listen, be patient, and be comfortable in the silence. It wasn’t normal for him to want his mom constantly by his side, but he thanked me almost every day for it.
Ian would say to me, “Mom, I don’t know how you do it, but thank you so much for being here with me. I could never get through this without you.”
And my reply was often the same, “I would never want to be anywhere else on earth, Ian. I love you more than everything.” I always will.
Karen A. McWhirt