Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.

Jane Biehl Ph.D.

This is a story with two ideas. One is about the beautiful oncology nurses, who selflessly take such good care of us. The other is about the importance of touch. I have written several articles in the past on these topics.

COVID-19 brutally and cruelly changed our lives and what we can do. As a counselor for many years, I often found no words to console grief-stricken people, because there truly isn’t any. I would ask if they wanted a hug and found that was all I could do. When one is being faced with the diagnosis of cancer, or the death of someone close to them, people do not want platitudes. Telling people, “It will be okay,” rings hollow and untrue.

I am going weekly to receive shots from the oncology nurses, which means 52 visits a year. My admiration for these people has grown ever more exponentially. They have braved the fear of COVID, sacrificed their own safety and remained cheerful throughout this horrible past year. However, one of the most touching moments I ever witnessed when I was talking to a beloved nurse about how hard her job is because they often lose patients. I followed up by saying that they cannot even hug them now. This brave professional teared up and nodded. I saw the extreme pain in her eyes. “I can’t even do that” she whispered.

Imagine what the nurses and staff are going through, and how horrible it is not to be able to hug when there are no words to comfort a patient. The following week, an article appeared in our local newspaper about the unsung heroes featuring a nurse in a nursing home. She lamented that now caregivers are not allowed to have skin on skin contact with the residents whom they have grown to love because gloves must be worn. Often the residents do not understand why. She emphasized, however, that they can still pat an arm or shoulder, and she does.

I do understand not everyone wants to be hugged, and have family and friends who I know are uncomfortable with this. However, touch is one of the most important of the senses we have. Even the most stalwart person appreciates an arm around their shoulder or a pat on the back. We have been robbed by COVID of one of the best senses we have to show we care. We can only hope that the vaccine will allow us to be able to comfort, hug, and show our love again in an important way.

Our oncology nurses have a hard enough job without being unable to do that. And the patients are suffering the cruelest fate of all – the sense that someone cares through this vital communication.

Articles

A cancer survivor laments the inability for a comforting hand during COVID-19.

The Loss of a Healing Touch During COVID-19

I have just passed my seventh decade. I can honestly say that I never remember being so affected by what is going on in the world and feeling this hopeless. Between a contentious election, troubled econonmy and the consequences of the COVID-19 pandemic, it has hard to see through the darkness in our times.

However, like many of us, I go every week to the lab and then to the hospital for treatments. I feel fearful how safe this is, plus experiencing the anxiety of perusing for my results to see what treatments will be given. All of us who are immune-compromised and cancer survivors find this extra stress in our lives.

In climates like mine, we are forced indoors over the dark winter months, and miss being outside safely distanced from our friends. One of my neighbors texted me she did not realize what a void this would be for her and missing our chats every evening watching my service dog enjoying the sunshine.

Worst of all is the constant, ever-present, dark, hovering cloud of a worldwide pandemic smothering us and presenting fear. This virus is ever pervasive, ever-present, and insidious and like a slithering monster, we never know when it will hit one of us or friends and family. One news broadcast mentioned that we have gone from hearing about COVID-19 to knowing people personally who have it. Every day we hear of thousands of more deaths and as our governor reminds us, these are people, not statistics.

We are all afraid of this horrible, seeping, sludge affecting all of us. I cannot imagine the pain of losing a loved one from COVID-19, and my heart just aches for the people in the nursing homes and residential facilities, and the staff and their families.

All of us are sad because we cannot be with loved ones over the Hanukah, Kwanza, Christmas and New Year holidays. This is the first time I am unable to make travel plans to be with my beloved family.

These are dark days indeed. I compare it to a terrible depression from my past like a blanket covering me. After counseling, I lifted up one corner, finally saw a glimmer of light, and began to heal.

I resort to my addiction during dark times of watching cheesy Hallmark holiday movies. My friends tease me about the six plots, which always have a woman in a large city going to a small town and falling in love to stay. There is usually a dog too! But right now I crave happy endings. Last weekend I watched the “Christmas Train” and heard a wonderful quote.

“Hope begins when you stand in the dark looking out towards the light.” This line is credited to the author Tracie Miles.

 there is hope. Vaccines against this monster are slowly arriving, we may have to celebrate our holidays like Christmas in the summer, winter days do not last forever, and cures are developed daily for cancer.

We cannot allow ourselves to go into the depths of deep despair like being in a quagmire of quicksand and we never get out. Instead, we need to stand on the shore, look for the light, and know better days are ahead.

A cancer survivor describes the dark days we are facing right now and expresses a ray of hope for all.

Looking Out For The Light

I am a cancer survivor and consider myself incredibly fortunate. I have lived longer than anticipated and been in remission for a long time. Presently I am not on any chemo, but am taking weekly shots to keep my red and white blood counts up. Just like all of us touched by cancer I am immunocompromised and scared of COVID-19 and its potentially severe impact on me.

We all have experienced the fear of ourselves or our loved ones becoming ill. We are changing up our holidays and unable to celebrate the same way we did in the past. We feel terrible as we look at the long hunger lines, people losing their jobs and becoming homeless in a free-falling economy.

There are also indirect consequences or what I call the “domino effect” I never thought about. It feels like the surge that never ends.

I didn’t realize how well I had adjusted to some of the consequences until now when new challenges hit me. The first is masks. I know I must wear them, but losing so much of my hearing due to chemo has made it difficult. The inability to lip-read is crippling for me. I have a Live Transcribe app on my phone which is a huge help, but not always accurate.

The loss of my teeth due to chemo has been hard. I needed a new splint because I needed to preserve the ones I have left. It took months to receive it because of the supply chain, frustrating myself and my dentist. With less than half of the teeth left, not having a splint for a year was worrisome and I am thrilled now to have it.

Another unexpected consequence was the constant falling. Anytime I attempt to pick up something, I lose my balance. My YMCA had a fantastic 

 program with special trainers to work with cancer survivors, and I went weekly. Little did I realize how much these sessions worked until they were forced to eliminate the program due to COVID-19 restrictions. I took for granted how much my trainer helped me until she couldn’t. 


I also have fibromyalgia and the special machines to stretch out those aching muscles are no longer used because of the danger of gyms. My legs are always twitching and my muscles aching from the side effects of the shots I am on, and walking does not help because of the fear of falling.

The other day I went to pick up my ornery cat, who was trying to run outside, I plopped square on my rear end. I held up my head so I did not hit it and started both laughing and crying— plus the cat still ran out!

I truly miss the hugs and touches of my family, friends, church congregation and caregivers. Touch is important to me, and we are not able to do this now. Never again will I take all of this for granted after COVID-19, and I do know how lucky I am to have a roof over my head, food to eat and not be in the hospital with a ventilator.

The point I am making is the little things add up too. With a vaccine on the horizon, I will be able to lip-read with joy. I will hug endlessly, and I will be at the gym religiously working to get my balance back. I think often about the long haulers of COVID-19 and what they face similar to those of us who are cancer survivors, with constant side effects of either cancer or the treatment.

All we can do is take it day by day and vow to never take the little things in our life for granted again!

A cancer survivor writes about the indirect consequences of COVID-19 on her and others.

The Things We Take For Granted Even As Cancer Survivors

Every one of us remembers our shock when we were told we had the dreaded C-word. We usually recall with clarity the doctor’s words, the size of the room, and who was with us. We share similar feelings of bewilderment, fear and the huge question—are we going to die?

We undergo treatments and hope for the best. Some of us initially turn inward, and others reach out. Everyone is different and copes in their own way, but there are some coping skills that helped me with this with a life-changing diagnosis I wish to share.

Follow your first instinct. Cry, throw things, get angry and feel sorry for yourself. Whatever works to let off steam is permissible short of hurting yourself or others. You have every right to be angry. I often say I do not ask why I got cancer but why anyone gets this insidious disease. Tell others if you want to be alone to process everything or need a shoulder to cry on. Sometimes it is both of these on the same day.

Do eventually reach out. Sometimes you feel friends and family have abandoned you because they leave you alone. Actually, how do they know what you need? Call them and ask for help if you need food brought, your place cleaned, errands run or just someone to talk or sit with you. Going inward and not asking for help over long periods of time is emotionally unhealthy.

Check-in with your doctor, nurse navigator or the oncology nurses about support groups with other people who have a similar diagnosis. People who have gone through the same thing as you can be a huge help, as any cancer survivors feel like we reach one hand forward to heal ourselves and another hand back to pull people up with us.

Unfortunately, I do not know one other person in my area with the type of cancer I have because it is so rare. But I have made friends through social media and international organizations like the Myelodysplastic Syndrome Foundation and Aplastic Anemia and Myelodysplastic Syndrome Foundation. The people there have helped me immensely.

Also, ask your doctor questions and admit you are scared. Share your concerns with them. Do not just sit there and wait for them to tell you what you need to know. They can’t because every one of us has different fears and level of knowledge and they do not mind readers. Make a list of questions to help you remember. It is advisable to take someone else with you to write down information and help you process what is happening. If the doctors refuse to answer questions repeatedly or belittle you in any way – fire them. You need honest and compassionate answers, and you deserve them!

Another very important hint is to watch where you get your information. Google or search discriminately. I had a friend who feared she would be dead in a couple of months. I was puzzled with this reaction given the type of cancer she had. When I quizzed her why she felt this way she confessed, “Someone put this on the Internet.” Go to reliable sources. Your doctor can give you some ideas. Some suggestions I have include MD Anderson, Web MD, Mayo Clinic, 

, and Cleveland Clinic. You may need to go to a specific website for your type of cancer like I did with my MDS diagnosis. Some anecdotal stories can be helpful, but they are not always accurate. Remember people tend to put bad experiences rather than good ones online. Marketing experts say a happy customer tells 3 people, but an unhappy one tells 10 people! Look at it this way, people with positive outlooks are probably out living life.

Try to relax any way you can. Exercise, reading, television, coffee with friends, meditating or any other way is OK. Honestly, I have coped with the horrible COVID-19 by watching occasional Hallmark movies, because I want positive endings. My friends tease me because of the shallow plots, but I think they understand!

Try to live for today. Worrying about the future will ruin the present, and remember to not be afraid to talk to others and reach out. Cancer is a life-changer, but you can cope with help. Try to remember most people are good and want to help you with the journey. Those who don’t, you want to avoid because you need positive attitudes rather than negative in your life. You will live longer and be happier!

A cancer survivor shares some ways she coped when confronted with her cancer diagnosis.

Jane Biehl Ph.D. | Contributors

The Loss of a Healing Touch During COVID-19

Looking Out For The Light

The Things We Take For Granted Even As Cancer Survivors

What To Do Next After Finding Out You Have Cancer

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