It’s been a long time since 2013 when Support Volunteer Teres was busy making plans. Her son was graduating college. After years of dreaming, discussing and planning, she and her husband were preparing to move their family to South Carolina.

Then, she was diagnosed with colorectal cancer.

“The doctor said ‘you have a tumor,’ Teres recalls. “That just shattered me. I wasn’t feeling ill.  Other than giving birth, I’d never been hospitalized. Suddenly, I’m getting radiation and a six-week course of 5FU chemo in a pump I carried with me 24-hours a day. We were discussing my ostomy and all that would entail.”

Like many patients, she began her treatment believing she was mentally and physically prepared for the side effects she’d discussed with her medical team. The reality was much more difficult than she’d expected.

“All I would do was cry. I got really depressed and I remember saying to my husband and my kids, ‘I’m not going to get through this, you’re going to have to put me away somewhere.” It was at that point Teres called Cancer Hope Network.

“I loved my cancer support group, but they couldn’t relate to me specifically on colorectal cancer and having an ostomy, especially as a woman. When I called CHN, I was matched with someone in my age bracket, who had had the same treatment and was five years out.”

That Support Volunteer shared a perspective Teres desperately needed. “I’d never met anyone or talked to anyone who had an ostomy. I didn’t know if it was a handicap where I wouldn’t be able to do anything. I had no idea how it would look for a young person who is married. It was so nice for her to say ‘This is what you can expect’ because the unknown is so scary.”

“What I really love about Cancer Hope is the detailed matching. Yes, it’s important to talk to people about cancer who’ve walked it – but when you look a little closer and find someone with a shared diagnosis or treatment, you can really talk to someone who has walked the same walk. It’s hard to have a conversation with someone who has never had this ostomy experience. It’s been really great to talk to other ladies and share my story. I can reassure them that their lives are not going to stop.”

Teres has always been a helper, volunteering for a variety of community service organizations through the years. But her diagnosis marked a turning point. “My desire to provide support to others has become heightened since I was sick. I think about all the support and love that I received, which was wonderful. Even strangers stepped up to let me know I was not alone. People I’d never met would send me text messages, I have a box of cards from people who would send me cards to say they were thinking of me. I know how important it is to make sure that you’re giving support.” 

During treatment, Teres was surrounded by a loving family, her “rock solid” husband and “lots of prayer warriors who were constantly encouraging me.” An independent person, more accustomed to managing responsibilities and keeping a tight grip on the reins, it was a big adjustment. “I had to humble myself at that time and rely on others to help me through the process.”

Today, she has embraced her “new normal,” paying forward the information and courage that was shared with her. Her husband launched his own trucking company in 2018. Her youngest son joined the Army in 2019 and in 2020, her oldest son welcomed a daughter – and Teres’ first grand child.

Settled in South Carolina, Teres was still seeing her New Jersey-based care team. In March 2020 she was adjusting to life as an empty nester when the pandemic hit. Teres, in the middle of a visit filled with doctor’s appointments and awaiting a colonoscopy was stuck in place – unable to leave New Jersey. Her husband, a long-distance trucker, was on the road. A self-described news junkie, she was glued to the television, watching as another “new normal” began.

Her own experience heightened her compassion for patients undergoing their first rounds of diagnosis and treatment. “I have a lot of family in the medical field and was hearing the pain they were going through. I was lucky. I’m physically well and doing ok. My doctors were able to have phone conferences with me. I’d get really emotional thinking about all the people who truly needed to physically be at their doctor’s offices.”

“I remember talking to some matches during that time – the overwhelming struggles that they were facing trying to get to treatment. People weren’t allowed to accompany them to appointments and visits. You’re already being sick and now you don’t have any support.” That empathy further strengthened her commitment to providing support over long distances.

“I had some friends who lost a lot of loved ones during Covid and they couldn’t be a part of funeral arrangements or see people. Whether it was through you guys matching me or other family members and friends who were lonely, I was trying to be a support system while trying to deal with my isolation,” she recalls. “It made me more aware of the present and how grateful and thankful I am that I’ve endured. I’m in my ninth year of being able to say that I’m cancer free. I didn’t get sick. I was able to still be helpful and useful, especially at a critical time when so many people needed help.”

Cancer Hope Network provides free one-on-one emotional support to adult cancer patients and their loved ones by matching them with survivors and caregivers trained as Support Volunteers and supported by a team of healthcare and social work professionals. Each of CHN’s 400+ volunteers is at least one year post-treatment or successfully undergoing maintenance therapies. CHN serves cancer patients in the United States and Canada. To connect with a Support Volunteer who’s had colorectal cancer, an ostomy – or other experience similar to your own, click HERE or call 877.467.3638.

The post Ostomate Power: Living Well After Colorectal Cancer appeared first on Cancer Hope Network.

Unfortunately, the scan revealed polyps – some clearly benign and others not so clear. He scheduled laparoscopic surgery to remove them “to be sure.” What was supposed to be routine surgery quickly became something else.

“I went in to have it removed laparoscopically. Five hours later, they’ve removed a cyst the size of a meatball, along with 14 inches of colon. My surgeon, Dr. David Ward sent the cyst to the lab and gave us the dreaded diagnosis and recommended an oncologist to help us move forward.” His oncologist, former CHN trustee Ken Adler, walked him through the benefits of chemo therapy (a reduced risk of recurrence) and suggested that, based on his markers, Mike would be the perfect candidate for a clinical trial in addition to the gold standard treatment he’d be receiving.

The trial was testing the efficacy of drugs that had been successful fighting other cancers. Instead of 3 hours for each chemotherapy treatment, Mike would need to stay for six. Plus, he’d be required to extend his treatment for six additional months.

Dr. Adler explained the pros and cons carefully, showing the empathy that is his hallmark. Even facing cancer, Mike wanted to help. He signed up.

“The additional drug we were testing had minimal side effects. I was never promised that the treatment would be the greatest thing since sliced bread, but I knew it’d be helping others,” he reflects. “What did I have to lose, other than time?”

Mike counts himself lucky. He views initial diagnosis as the most difficult part of his fight. “People die from cancer. It was an initial shock. But it became much easier after that.”

He worked through treatment, even travelling a bit. “I was lethargic, but not sick. I forced myself to get busy, get in the shower, stay busy. I got up every day with a sense of purpose. That’s what kept me going, what gave me the energy to keep moving. I was lucky. After speaking to so many others about their reactions to chemotherapy, my reaction was in the top 10% best possible version.”

A self-described “healthy guy,” he recalls feeling fortunate while getting his weekly infusions. “How could I possibly feel sorry for myself? I’m here once a week, there’s a woman who’s had every day treatments for 28 days. There’s a parent whose kid is receiving treatment. It was easy to keep a positive attitude because others had it so much more difficult.”

Plus there’s Mike’s sense of humor. His weekly treatment included a bag of medication that he carried with him. “If you go in Wednesday for three hours, you leave with a bag and a wire and have to come back Friday to give it back. I was receiving chemo, but I could go to work. I put the pouch on my belt, hidden under a sport jacket. Guy asked what was in the pouch and I responded honestly – FU. (the name of his drug)”
For ten years, he’s channeled his zest for life and sense of humor into helping others as a CHN Support Volunteer. “On some calls, the person is initially very reticent about saying anything to me. I’m just a voice on the other end of the phone. When they realize I’ve had the same diagnosis, treatment and issues they’re facing, they open up. A lot of people need some kind of cheerleader. They need reassurance from someone who has been there, done that. I become that cheerleader.”

He encourages anyone diagnosed with cancer to get connected to a Support Volunteer. “So many people have well-meaning people in their lives who don’t know how to handle it. To call on someone who went through what you are makes life a little easier.”

Today, the husband (he and his wife will soon celebrate their 45^th anniversary), father and Army veteran who served in Vietnam is enjoying the life he once dreamed of, full of good health, golf and travel. Best of all, there’s lots of time with his grandson – “Having a grandchild is like eating all the ice cream you want and not gaining any weight.”

The post A bag of FU and hope. appeared first on Cancer Hope Network.

Today, we’re pleased to share Phil’s suggestions. 

Five years after he lost his beloved wife to colon cancer, Phil got a diagnosis of his own.
Stage IV colon cancer.

After his diagnosis, Phil called Cancer Hope Network and was matched with Norm. “It was encouraging just to know that Norm is also a survivor. After chemotherapy alone failed for him, he and his doctor added a second drug, a combination that worked. Knowing his treatment story gave me the information to speak to my doctor about options for my own treatment and we elected to begin my treatments using ‘both’ from the beginning of chemo treatment.”

Always a healthy person, Phil’s diagnosis was a call to arms, where he’s focused on preventive measures and getting to/staying in remission long enough for researchers to make the new strides in immunotherapy.

Today, at 73, he was recently declared in remission.

“I have a tendency to want to fix the world,” he admits. “I spent 12 years as a quality officer, looking for the root causes of problems and how to fix them. Simultaneous occurrence of multiple defects causes disaster. It’s not just one thing going wrong.”

Request a peer support match.

After a low white blood count delayed his treatment, he began applying his quality strategy to the fight with colon cancer. He has the missionary zeal of a patient who’s found a treatment that works for him and detailed plans any engineer would be proud to call their own.

He plays tennis three times a week, takes walks on the beach with his fiancé and takes the occasional bike ride. Despite seven cycles of chemotherapy, his white blood cell count is the highest it’s ever been – something he credits to a dietitian provided by a local cancer screening company.

NOTE: Cancer Hope Network does not recommend treatments or physicians. We share Phil’s suggestions for your information and to encourage conversation with your care team. You should always speak your doctor before making dietary or exercise changes.

Phil’s Patient Tips from a Stage 4 Cancer Patient In Remission.
Surgery and Chemo are medical treatments for stage 4 cancer, but patients must also do everything they can do win their cancer fight.  My “Patient Goal” is to do what is necessary to avoid delays in treatment and avoid anything that could interfere with treatment.   Here are tips that have helped me meet that goal.

White Blood Count (WBC)
It is key to keep WBC up to avoid infection and to avoid delayed chemo treatments.
Protein requirement  – 1 gram protein for every kilogram of weight, + 20 grams while undergoing Chemo.

For me, a 185 lb man, I require about 100 grams of protein per day while on Chemo; but I was only getting about 30 grams per day. After failing my first white blood count test and having my chemo treatment delayed, I had to significantly change my diet – see below for my high protein diet.  While on this diet I did not fail another white blood count test and was able to get chemo treatments on schedule.
WBC can be “reduced” by:

• Chemo
• Analgesics (I stopped daily use of Nasal spray or Sinus medicine.)

WBC can be “increased” by eating more protein:

• Protein Foods: Milk, Eggs, Smoothie, Tuna, Chicken, Ensure drink,  Cheese sticks, Fruit & Cottage Cheese
• Exercise At least 1 hour per day; Walk, Bicycle, Tennis or Swim.
• Medications

Medication
Your doctor may prescribe medication like Zofran (Onandsetron-ODT) to help deal with nausea or other side effects of treatment. I used the (free) GoodRX app to check Zofran pricing at all pharmacies in my zip code. I was shocked to find my normal pharmacy had a price that was about 13 times more expensive than a nearby pharmacy.  I only used 2 of the 90 pills in 12 weeks of Chemo treatment. Shopping around saved me more than $500.

Infection Protection

• Carry hand sanitizer and use regularly. Do not sweat or get dirty with pump on.
• Wash hands frequently; Take Pro-biotic/ Yogurt
• Avoid Airplanes and Hospitals (Use face mask – if low WBC)
• Avoid people with colds, move away from people who are sneezing or coughing.
• Avoid hugging kids and grandchildren; they may have infections.
• Talk to your oncologist if you think you need an antibiotic.
• Eat enough protein to keep WBC up.

Cold Sensitivity Reduction:

• Be prepared for increased sensitivity to cold temperatures.
• Have a sweatshirt to deal with A.C., avoid cold iced drinks and ice cream
• 1^st night after Chemo – cold feet. Use Recliner to have more blood to feet.
• Use foam support recliner for sitting up in bed to keep heart above feet.
• Use warm socks at night.

Mouth Sore Avoidance:
Use water and salt (1/2 teaspoon) and Baking soda (1/2 teaspoon) as mouthwash.
Do not use any mouthwash with alcohol.

Neuropathy Avoidance:

• • Eat greens for Vitamin B. also spinach, sweet potato, chicken, turkey, tuna
  • Avoid heavy blankets on feet at night that can cause nerve sensitivity.

Skin dryness and cracking on hands and feet and lips:
Use Udderly Body Cream on hands and feet.  Chapstick on lips.
Fatigue and tiredness:
Exercise as strength allows. When possible, walk, bicycle, tennis, swim or dance at least one hour each day. Get off the couch and out of the house – do SOMETHING you enjoy. You are fighting for your life: exercise and diet are something you can do to win.
Treatment time (4 hours) stuff:

• Sipper Sweatshirt, Kindle, Book, newspapers, cell phone & charger, snack,
• Wear Button shirt to access port.

Chemo Pump tips:

• Chemo Pump is required for 48 hour chemo IV.
• Do not drop the pump.
• At night put pump in cloth bag and tie bag handles so it does not fall out.
• Record all the info needed to call for port assistance if pump stops. (Name of Pump, Serial #, 800 service number, Chemo oncologist, etc.)                                                                                                

My High Protein Diet for Chemo Patients
Helpful websites:
American Cancer Society (ACS) website – Low Blood Count Diet 
American Institute of Cancer Research  – AICR’s Foods that fight Cancer

Notes:

• Fruits:   Eat fruits that you peel – banana, cantaloupe, watermelon. No citrus, grapes, blueberries, apples.
• Drinks:  No alcohol, or caffeine
• Fish: Good for protein. No sushi or any uncooked food.
• Eating out:  No buffet, no salads, no tomato or lettuce on burger to avoid possible bacteria.

Protein is required to maintain white blood count for fighting infections and to maintain muscle for strength and balance. Chemo can cause weight loss and the body sheds muscle before fat.

Plus lots of water per day to flush Chemo chemicals through system and stay hydrated.  10 – 8oz glasses/day during 3 days on chemo and 8 – 8oz glasses after first 3 days.  It may be easier to use  4 to 5 – 17oz water bottles of water per day, and keep bottles used on the counter until the end of day, as a water count.

The post Tips from a Stage IV survivor appeared first on Cancer Hope Network.

Then just like that they say it’s over – you can leave. I don’t know which way to go and I have to find my own way back. You are so used to this prison, you are familiar with this place. But I don’t have to stay here anymore. I walk out tentatively, slowly, full of anxiety and fear. Always looking over my shoulder because they said to be careful and watchful. It can come back to get you. Take you back to the terrible place. They said it usually does come back. With you guys it usually does. But we don’t know when.

Do I tell people I’m out? They will be excited and happy. They will want to know it’s all done. But I’m worried they will ignore the warning that it may come back. It almost always comes back. I really don’t think I will be free for too long. So I’m not sure I should let my guard down. But I want to go and leave this place. I start on my way but I tiptoe and walk very, very carefully. Peering around every bend and my heart is pounding with fear and I break into a cold sweat – is it there? It feels so near. For a time I’m paralyzed on my journey, now held prisoner by my own self.

I can’t move forward. I cannot. It is safer to stay put. It is safer to just sit right here. I will hold my husband and children to me, and if we just sit here together nothing bad can happen. Nothing will separate us. None of us can go out and die. We can all grow old together. My children will not lose me if I stay still. Yet I sit with my heart conflicted.

I am free to go but I don’t know how. I know how excited I should be. But if I let myself be too excited, to feel safe, It may find out and come back for me. If It comes back for me, It comes back for my children because they will lose their mother. This thought. It freezes my spirit in fear. My children losing me. It is at the core of it all.

I do manage to make some distance and find a home with my family. But my old prison is nearby. Sometimes I swear it’s as if It is closer to my house today than it was yesterday. Sometimes I feel sick and have physical problems. My heart screams with fear. Maybe I should start just walking back to the old prison and get it over with. It’s here. I know it. It’s back. But God’s helpful hand comes and calms me. He guides me back to my home. But my soul and mind is still filled. Filled with a heavy, deep and almost unbearable weight that is fear.

I try to start to rebuild my life. I have been given a second chance. I must not waste it! Things are feeling better, happier. I start to work, take care of my children. But the prison is so close, it drives me to distraction. I stare at it. Ruminate over it. All the while I go about my life. Grateful to be here. Alive.
I start to feel I will tear out my hair. I live in constant fear of that horrible place. Of that disease. That place that will rob my children of their mother.

Then one day I meet a very kind and wise woman. She has helped so many move  away from It and the prison. We start to talk. I tell her all of the fears. Of the nightmares. Of the places I don’t go and things I don’t do because I am afraid to take the chance. I could die if I go out. Then my children won’t have their mommy. They will forever have an emptiness that will never heal. They need me.

I tell her with guilt in my heart and tears down my face I am so happy to be free and released. But the fear of It’s return is eating me alive. Bad memories hit me in the middle of the day and shatter me to pieces. In the middle of the store, at work, watching T.V. I cannot breathe. I cannot breathe. Fear and memories are a deafening rush in my ears. I have been out, I tell her but I am stuck. Frozen. Scared. My life is being consumed by fear, guilt and weariness. I talk to her for days and weeks. I tell her things I have not told anyone. Things so painful to my heart. She listens compassionately and starts to help me.

She tells me I have to go back and look into that prison. I go. I don’t want to but I must. I peer at it through the fingers covering my face. It all hits me like a big black tidal wave and knocks me flat. I see and smell and remember too acutely as the tidal wave pours over me. All the dark, all the fear, death, and trauma. The trauma.

It was hard to say the word out loud to my friend. She wanted to know. It came out through a whisper and tears. As I said it, it felt like a million little knives were stabbing me. Trauma. I think that’s what I went through. I couldn’t see it when I was there. I was too busy trying to get better, to stay alive, to get out.
It is hard to face and admit that word, and allow those experiences to be faced. I don’t want to seem ungrateful or complaining. Here I am alive! Living! I am happy I got out. But yet I struggle.

My wise friend said to me that we are all happy you are out and alive. That doesn’t mean you have not suffered while you were in there. Those experiences don’t leave because you have physically left that place. And the friends who were suffering with you. They did not make it out. That also hurts you, and you grieve for them. But it also leaves you feeling isolated and alone.

I look at her and smile and want to hug her tight. I say I don’t feel so alone anymore. She asks me about the traumatic things. I don’t want to talk about it. It sounds like I’m complaining. But she encourages me in her soft quiet way. I cry and sob and talk my way through some of the traumatic experiences, the bad memories, the nightmares, the grief over loss of friends. I go home and as she suggested, write out more things. I start to feel lighter. When I look out the window I know for sure the ground must be shifting or moving in some way because the prison is so far away I have to squint to see it.

I go again to see my wise friend. She is teaching me that despite my fear I have been doing things. I have been living. Three years have gone by since my release and even though I have been filled with terror and fear, she points out that I have been working, playing, volunteering, and going on trips with my family. Going out with my friends. And nothing bad has happened to me. That may seem obvious to her and most others. But it was not to me. But I see that now it is true and more fear lifts from me.\

I have more room in my spirit for better things since the trauma has been recognized. Acknowledged. Addressed.

After I was diagnosed with stage 4 colon cancer in April 2007 I was in treatment for 5 years. Death sat on my shoulder, was my shadow that whole time. There were times I thought I was going to die and I was so heartbroken, angry and inconsolable in my spirit because my kids would not have their mother, their suffering would be tremendous, I didn’t want them to hurt. I wanted to be there for them. I did not want to leave them. I would lay at night next to my son or daughter and just stare at them and cry as they slept. How long will I be here? How far will I get to see them grow? It was like have a gun pointed at your head for 5 years. Then “poof,” the gun was gone.

I am so grateful for everyday, every minute I have on this earth. However, I have come to realize that doesn’t and can’t mitigate what I experienced the first 5 years of treatment and the following 5 years of coming to terms with that. Being on the survival side of things is a new journey and definitely one I prefer to the cancer patient one, and I have to acknowledge that.

I am so grateful to my oncology counselor Maggie who helped save my spirit and my mind from self-imploding.

Flashbacks, fear and anxiety still come out of nowhere but they are less frequent and I can recognize them now and learn to ride the wave of it and breathe deeply as it passes. Scan time I am a mess but I believe that is part and parcel of anyone with any cancer diagnosis and I don’t beat myself up for “not getting over it.”

The farther I go the freer I feel. I continue to move forward and enjoy life. By going to counseling, praying and many moments of deep breathing I am doing so much better. Fear does not rule my whole being, my whole life as it once did. It is there, it is a part of my experience. However I am now master of it instead of it mastering me.

To get matched with a survivor or caregiver volunteer, call 877-HOPENET (877.467.3638) or visit cancerhopenetwork.org/support

The post Escape from fear: life after treatment appeared first on Cancer Hope Network.