Andy Winnegar

I’ve worked with a lot of support groups working in disability rehabilitation since 1974. The population of people with disabilities is diverse from developmental intellectual disabilities, blindness, deafness, spinal cord injuries and chronic illnesses.

It wasn’t until I was diagnosed with chronic lymphocytic leukemia that I discovered that not everyone knows how to run and manage a support group.The first problem I noticed was too many people in the virtual room. I attended three different online CLL support groups. The first was a group of around 20 individuals at various stages of CLL.Some had experienced secondary cancers, and some had severe side effects while others in the room were in watch and wait status.

This support group was a round robin where each person took a turn telling what was happening with their CLL.It was hard for me to understand the various treatments that folks had endured.Also, for those who were impacted by secondary cancer it was difficult to provide support outside of saying how sorry you were that they were having these issues. At the same time, I had difficulty sharing my thoughts as I was only in watch and wait and did not have the experience of those already in treatment.

My second support group again had too many people in various stages of treatment and only one or two in watch and wait.What really made this support group difficult was that rather than a Zoom meeting it was a group texting effort. When a person entered the virtual room there would be many greetings and updates but because the texts were coming in from everyone it was hard to keep up. Those who had side effects from treatment tended to text the most about their difficulties and many didn’t have a chance to say anything.

Happily, the last support ground I attended was well managed and only for those in watch and wait status. The moderator explained what symptoms would require treatment.Here is a quick summary.

Fever over 100.5 degrees F (38.0 C) for more than 2 weeks without evidence of infection

Night sweats for more than a month with no evidence of infection

Unintentional weight loss of more than 10% in the last 6 months and

She also took the time to answer questions that had been provided earlier or were asked when someone raised their hand.

She didn’t allow anyone to dominate the conversation and reach out to those who hadn’t said anything.

I worked with individuals who experienced severe disabilities in the Independent Living movement. Here are some of the rules we followed for support groups.

You want to have people who gather to share common problems and experiences associated with a particular problem, condition, illness, or personal circumstance. It is helpful to have an experienced person who has lived with a spinal cord injury to talk to someone who has completed inpatient rehabilitation.

In a support group, it is important that people are able to talk with other folks who are like themselves - people who truly understand what they're going through and can share the type of practical insights that can only come from firsthand experience.

Effective support groups should have these features:

 - people who are all directly affected by a particular issue, illness, or circumstance.

They usually have a professional or volunteer discussion leader or facilitator.

They tend to be small, to better allow everyone a chance to talk.


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Managing a cancer support group isn't easy.

Cancer Support Groups

I regularly attend these therapy sessions to explore and better understand my emotions. One of my fears is that if I accepted the sadness of depression and let myself cry or feel down, I might not escape from those feelings. I grapple that apprehension of facing the depths of depression might lead to an inescapable quagmire of emotions.

According to my therapist this type of denial can be harmful. As she said, running away from your own feelings will eventually catch up with you. You are basically running away from yourself. Denial of grief is a coping mechanism and it will need to be dealt with or it may come out in other ways. In my case, my drinking increased and this self-medicating dulled my emotions, but I was still depressed.

In my ongoing journey of dealing with cancer, I've been working on managing my emotions more effectively. I've been learning to navigate my emotions using the mindfulness full body scan technique.

When going through the process from feet to head, my thoughts, worries and feelings pop up but rather allow the distraction that these thoughts must be set aside.

That is something that will happen and understanding these thoughts and worries are an important part of the mindfulness process.

The full body scan is a way to cultivate awareness of physical sensations and promote relaxation.

Find a quiet and comfortable place to sit or lie down.

Begin with posture: If you're lying down, make sure you're in a comfortable and relaxed position with your arms at your sides. If you're sitting, sit with your back straight and your feet flat on the floor. Close your eyes if it helps you focus.

Take deep breaths: Begin by taking a few deep breaths to center yourself. Inhale slowly through your nose and exhale slowly through your mouth. This helps you relax and prepare for the scan.

Start from your feet: Begin the body scan at your feet. Focus your attention on your toes, the soles of your feet and your heels. Notice any sensations in these areas, such as warmth, coolness, tension, or relaxation.

Move upward: Gradually shift your attention upward, moving to your ankles, calves, knees and thighs. As you do, continue to observe any sensations without judgment.

Continue through the body: Progress through each part of your body, from your hips to your abdomen, chest, back, shoulders, arms, hands, neck and head. Take your time with each area, allowing your attention to linger for a moment.

Stay mindful: If you encounter any areas of tension, discomfort, or pain, observe these sensations without reacting or trying to change them. The goal is not to change your physical sensations but to become aware of them.

Mindful breathing: Throughout the body scan, maintain awareness of your breath. Your breath can be an anchor to the present moment. Notice the rise and fall of your chest or the sensation of the breath as it enters and exits your nostrils.

Acceptance: Practice non-judgment and acceptance. It's normal to have various sensations in your body and the purpose is not to label them as good or bad but to simply acknowledge them.

Conclude: When you've completed the scan, take a few deep breaths and slowly bring your attention back to the room. Open your eyes if they were closed.

You can adjust the duration of the scan to fit your needs, but it's often done in 10-30 minutes. Over time, regular practice can lead to increased relaxation and a deeper connection with your body.

I've realized that delving into depression and allowing myself to feel sad doesn’t result in being overwhelmed by grief or any loss of self-control.

Understanding the importance of sharing emotions with family and friends is a crucial lesson. I’m still working on being more open. I appreciate the intimacy I share with my wife and it does alleviate my sense of social isolation since my cancer diagnosis.

Reflecting on these experiences and trying to confront the realities of my diagnosis and potential treatment have been impactful. I haven’t often expressed my true feelings.

But rather than face cancer by myself, I have found this type of intimacy by being open and expressing my true feelings with family and friends. It has been beneficial as I feel less socially isolated and alone.

I see a psychologist who is helping me to understand my feelings and to learn mindfulness meditation techniques.

A Full-Body Scan: The Reality of a Cancer Diagnosis

Kubler-Ross identified five stages that patients go through as they come to terms with their terminal illnesses. The stages—denial, anger, bargaining, depression, and acceptance.

The grief stages haven’t been linear for me. I’ve skipped around these stages and perhaps even skipped some.

At the time I was diagnosis, in December 2017, I thought I could deal with the disease without treatment.

I sought second opinions and researched studies to understand how the watch and wait criteria fit me.

I was more concerned with the potential side effects of getting treated than I was with the survival rates.

Most men fear prostate cancer treatment and the potential side effect of impedance or incontinence more than they fear death.

There have been improvements in treatment robot-assisted prostatectomy (robotic prostatectomy).

According to the American Cancer Society the 5-year relative survival rates of 95%.

During this procedure, a surgeon removes your prostate by guiding a robotic arm from behind a control panel. The robotic arm allows for greater precision than if they perform the surgery by hand.

Some newer techniques deliver higher doses of radiation in fewer treatments, reducing the overall treatment time.The sexual side effects are low, like what is experienced with more extended external radiation techniques.

I read every prostate cancer comparative outcome treatment study I could find. But I delayed my decision to have treatment as long as I could.

There was a lot of debate on the online support forums about treatment options. Those who had been treated advocated for the treatment they received and dismissed or negatively reacted to treatment questions that differed from their own treatment.

At the same time, I was angry that my family doctor had stopped testing my PSA in 2012.

The U.S. Preventive Services Task Force is an independent, volunteer panel of national experts in disease prevention and evidence-based medicine that had recommend that men not be annually screened with a PSA test. They were worried too many men with having their prostate removed based on the PSA results.

My family doctor resumed testing My PSA in December 2017. However, I had been taking a 5mg Finasteride pill since 2006 prescribed by my urologist to treat my symptoms of benign prostatic hyperplasia.

The drug lowers PSA level and my PSA level in 2012 of 2.5 should have been assumed to be double that level. By the time I was tested in 2017 my PSA was at 14 and with the Finasteride could be assumed to be 28.

Rates of PSA testing increased significantly after the USPSTF’s 2017 draft statement reversed the prior recommendation on prostate cancer screening.

There was a significant increase in advanced prostate cancer after the PSA testing resumed.

My research and online discussions were therapeutic and I finally accepted that I would ultimately need treatment.

Two large clinical trials for intermediate high risk prostate cancer showed long term survival benefits from six months of hormone therapy combined with radiation from 86% to 95% at five years.

My jump from the bargaining stage to acceptance of being treated took me nine months. My anger was still with me, but I couldn’t blame anyone. I just had to accept that I had cancer that needed to be treated.

Similarly, when I was diagnosis with chronic lymphocytic leukemia in 2021, my biggest fear has been starting treatment and how the side effects of that treatment impact my running.

Because I don’t need treatment now, I still worry how I will deal with it when I do need treatment.

I was in denial after the shock of being told I had prostate cancer. 

Stages of Grief After a Cancer Diagnosis

After receiving a cancer and autoimmune diagnosis, Andy became more vigilant about his health — especially during the COVID-19 pandemic. 

After surviving prostate cancer, radiation and six months of hormone treatment, a new challenge arose.

In August 2021, I received a diagnosis of chronic lymphocytic leukemia (CLL), a slow-growing blood cancer.

This diagnosis wasn't immediate; it took three months and the discerning eye of an experienced medical oncologist to identify the condition.

My wife and I had planned a vacation in Belize, but in March 2021, we canceled the trip as the pandemic spread around the world. Fortunately, our travel insurance policy came to the rescue, reimbursing us for most of the prepaid resort lodging and meals and the flights could be rescheduled.

Then in May 2021, I began experiencing incessant itching on my scalp, which my family doctor initially diagnosed as shingles, prescribing an anti-viral medication. Unfortunately, the treatment left me nauseous, and the itching had spread all over my body during the month. I found solace in multiple daily cold showers even in the middle of the night.

After consulting with two dermatologists, they concluded that it couldn't be shingles as it typically affects only one side of the body. It wasn't until the CLL diagnosis that the pieces of the puzzle fell into place — I had both warm and cold autoimmune hemolytic anemia, a rare condition caused by autoimmune antibodies attacking red blood cells. One of the most prevalent symptoms of this condition is, you guessed it, itching.

In January 2022, I embarked on a series of four weekly infusions of Rituxan (rituximab), a targeted therapy for autoimmune hemolytic anemia and other autoimmune disorders like rheumatoid arthritis, systemic lupus and multiple sclerosis. These rare conditions are challenging to diagnose, disabling and come with hefty treatment costs.

Today, I remain vigilant with my vaccine boosters, mask-wearing, when necessary, frequent handwashing and maintaining physical distancing. Given that skin cancer poses the most significant secondary risk to CLL, particularly basal cell carcinoma and melanoma, I take every precaution to minimize sun exposure during my morning runs, relying on sunscreen and protective clothing.

I confess that I attended my son's and daughter's large weddings, involving air travel, and there were moments when I didn't always wear a mask or maintain social distance. The looming disease prognosis and the pandemic lockdown amplified my anxiety and led to increased drinking.

With guidance from a perceptive psychologist and unwavering support from my family and wife, I've successfully regained control over my anxiety and drinking.

Immunocompromised individuals like me encounter unique challenges. These challenges extend to those with blood cancers, organ transplants, cancerous tumors, diabetes, kidney disease, older adults, individuals with HIV infections, and steroid users — all of whom may have suppressed immune systems.

Managing illness or infection in its early stages is crucial for those who are immunocompromised.

Although most healthcare facilities no longer mandate masks due to reduced hospitalizations compared to the pandemic's peak, it's vital to recognize that there is still a risk for severe diseases and death for several contagious diseases.

 recently published an article detailing changes in mask requirements, emphasizing the continued risks associated with SARS-CoV-2, influenza, respiratory syncytial virus (RSV), human meta pneumovirus, parainfluenza virus and other respiratory illnesses.

Notably, a significant portion of hospital-acquired pneumonia cases may be caused by viruses rather than bacteria. Masks prove most effective when consistently worn, with KN95 or N95 masks being the gold standard, provided they fit correctly and remain in place.

Should you find yourself in need of medical treatment at a hospital and require accommodations like mask-wearing by the staff before entering your room, don't hesitate to request these accommodations under the federal law known as the Americans with Disabilities Act (ADA).

This post was written and submitted by a CURE reader. The article reflects the views the author

and not of CURE®. This is also not supposed to be intended as medical advice.

After receiving two cancer diagnoses, I became more vigilant about my health — especially during the COVID-19 pandemic. 

Andy Winnegar

Cancer Support Groups

A Full-Body Scan: The Reality of a Cancer Diagnosis

Stages of Grief After a Cancer Diagnosis

After Cancer, I’m More Vigilant About Health Risks

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