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Photo Credit: K. Lunblad

Photo Credit: K. Lundblad

Living with a cancer diagnosis is difficult. Meeting people who “get it” – whether in a support group, in chemo or in the doctor’s office – can be helpful and even uplifting. These people understand what we’re going through. They often know what to say, even when to joke and they don’t look at us with that “I’m sorry” face. We get to know these people well, and when we learn that they have died, it’s tough. Depending on the circumstances there can be fear and/or guilt: “will this happen to me?”/“why did this happen to them and not me?” When we feel connected to others, it’s hard not to compare their experience to our own.

Two members of my support group recently died. Of course, this was upsetting to the group and they were left with intense feelings. The group expressed their fears, sadness and uncertainty about the future; a few group members cried. Together, we talked about how these two special people made such a big impact. We also discussed what their death means to us as a group and individually.

Losing someone you care about to cancer is difficult and naturally raises questions and concerns, especially if the person who died has the same type of cancer. It’s important to talk about your feelings and not to hold them inside. Having a place to express your feelings can make you feel better it can even lighten your emotional load.

Have you experienced the death of someone you care about? How has it affected you?

I look forward to hearing your thoughts, feelings and experiences on this topic.

Warmly,
Stephanie


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

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pain

Photo Credit: K. Lundblad

Cancer pain is such an important topic and one that’s not often talked about enough. Pain is very individual and in many cases, kept quiet. There are lots of reasons why people do not openly talk about their pain with their healthcare team and/or loved ones. Here are some reasons why people keep their pain to themselves:

  1. Fear of being seen as weak
  2. Thinking that the pain is temporary
  3. Not wanting to complain/be difficult
  4. Concerned that others will worry
  5. Resigning to this being part of a new normal

Cancer pain is not only hard on our bodies, but also on our spirits. When we’re feeling good physically, we often feel good emotionally. By opening up about your cancer pain, you can get the help you need (and deserve!) from professionals and loved ones.

Recently, a mother and son came to my support group. The mother was noticeably in pain, so her son did the speaking. He shared that his mother is very fatigued and sleeps a lot. Knowing the importance of exercise (both physically and mentally) he wants her to get out of bed. He wishes that she would have more energy. The group talked about how debilitating cancer pain can be and that sleeping and/or staying in bed is often a way of coping with pain. They also acknowledged how helpless family members can feel. By asking questions, the group and I tried to get a better understanding of her pain level. We encouraged the son to talk to his mother’s medical team about her pain and suggested that they also look into working with a pain specialist. After hearing the group’s thoughts, the son expressed his appreciation. His mother seemed relieved to hear our suggestions, and the group members felt good knowing that they were able to offer guidance and comfort from their own experiences.

Willing away cancer pain is not the answer. Having your pain be known (because no one knows your body better than you!) can help you get the support and resources you need to best manage your pain.

What are your cancer pain experiences?

Is pain a topic that you feel comfortable discussing? Why or why not?

What would you like people to know about your pain?

What has been helpful?

What has not been helpful?

 

We look forward to hearing your thoughts and experiences.

 

Thanks for sharing!

Warmly,
Stephanie


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

 

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Photo Credit: K. Lundblad

Photo Credit: K. Lundblad

Communication is so important, but communicating your wants, thoughts and feelings is not always an easy thing to do, especially when it comes to talking about cancer. Some people are naturally good at expressing their emotions and openly talking about their cancer diagnosis (or a loved one’s diagnosis). But for many of us, this can feel uncomfortable and, at times, even awkward. Common questions that I hear people ask in my support groups are: what do I say; how much do I share (especially when I still don’t know a lot myself); how will others react?

Many group members worry that they will be looked at differently, not as capable or strong as they were before the diagnosis. Others worry about scaring the people they love and would rather not share or say too much for fear that they will upset family members and/or friends.

As an oncology social worker, I have seen the benefits of open communication with family and loved ones. It is natural to want to protect the people you love from pain, sadness, worry and fear. This is often why people do not keep the lines of communication open when they are dealing with a difficult situation. Whether you are the person living with cancer or a family member/friend, it’s likely, at some point, that you have kept your thoughts, feelings and emotions to yourself…or you may still be. In most cases (and there are always exceptions), people cope better when they don’t have to hide their situations/ thoughts/feelings. It takes a lot of time and energy to keep this important information to yourself. When family members and friends know what you are going through, they also cope better. They feel more included and connected, and they’re more likely to be available to provide needed support. In addition, loved ones often worry less because when we don’t have all the information, we let our imaginations run wild with worst case scenarios. As a result of open communication, the relationship is usually stronger, more connected and more supportive.

Here are some helpful tips to talking with relatives and friends about cancer.

1. What do I say/How much do I share?

You do not have to share everything with every person. Think about your relationship with the person with whom you want to talk. Sometimes just saying, “I have cancer” out loud feels like enough. For others you may want to share more about your diagnosis/thoughts/feelings/emotions.

It’s okay to say I wanted to share my diagnosis with you, but I’m not feeling up to talking about all the details.

You can also say that you don’t have a lot of information at this time (this applies to people who are more newly diagnosed), but that you wanted to let them know what’s going on with you.

2. How will others react?

While we never can know exactly how people will react, we usually have a sense. Has this person been supportive before or with others who have gone through a difficult situation? Many times I hear people talk about family members and/or friends who are disappointing, especially because they were thought of as close and supportive. Often, these people retreat because they do not know what to say or do to be helpful. As a result, communication breaks down which leaves us feeling badly. At the same time others, who we might not have known as well, came through as incredible supports. When you or a loved one have cancer, you find out pretty quickly who you can turn to for support.

3. Will I be looked at differently by others (less capable and strong)?

This is possible, but with open communication you can let the people in your life know how you’re feeling and what you can and cannot do. It is important for them to know how you would like to be treated.

How do you feel about talking to relatives and friends?

Is this something easy or hard for you and why?

What are some techniques that have been helpful when talking to family and friends?

Do you have thoughts and/or questions that you would like to share with us?

I look forward to hearing from you and to sharing.

Warmly,
Stephanie


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

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Deer Park Monastery Photo Credit: K. Lundblad

Deer Park Monastery Photo Credit: K. Lundblad

Recently, a group member brought up religion. He shared that he’s made an observation when he talks to other people who have cancer. He feels that religion is often an indicator to how others are coping. Another group member immediately said, “I have too.” She then turned to me (the facilitator) and said, “But I thought we were not allowed to bring up religion in group.” I said that we can absolutely talk about religion as long as everyone is respectful of each other’s beliefs and differences, and as long as we don’t try to put our beliefs on to someone else. The group agreed.

This group member went on to say that when he talks to other people who are living with cancer, he notices that religion is a factor in how they are (or are not) coping. He feels that his religion has given him a foundation, and that he relies on his faith when he needs strength to get through a difficult situation. He shared that he’s aware of others coping well when they are connected religiously and/or spiritually; but when he talks to people who do not feel connected this way, they seem to struggle more with their diagnosis and uncertainty.

Religion and spirituality are unique to each individual and can have many meanings. Often they provide people with comfort, but not always.

Is religion/spirituality a factor in how you cope?

Is there something other than religion/spirituality that helps you through difficult/challenging times?

Is religion/spirituality difficult to connect to right now?

I look forward to continuing this important and (possibly) sensitive topic. Please know that there are no right or wrong feelings/thoughts/connections.

Warmly,
Stephanie


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

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Photo credit: K. Lundblad

Photo credit: K. Lundblad

During one of my recent face-to-face support groups, we spent some time discussing insensitive people in our lives. One group member shared that he was recently approached by a co-worker (whom he is not close to). This woman wanted to know his prognosis and any other information that he was willing to share about his cancer. He was surprised and upset by his colleague’s intrusive questions. He said that he felt “put on the spot.”

The group and I validated his feelings and together we talked about possible ways to handle these situations in the future. Several people shared that they have had similar experiences and that they, too, felt uncomfortable. Together the group came up with five answers to give people who ask intrusive/insensitive questions.

  1. This is private.
  2. It’s hard for me to share.
  3. I don’t feel comfortable sharing at this time.
  4. Thank you for your concern. I’m okay. (even if you’re not). Or…
  5. Thank you for your concern. If there’s something that you need to be aware of, I will let you know.

Have you ever been approached by a family member, neighbor, colleague or acquaintance with questions about your or your loved one’s diagnosis/prognosis?

Have you experienced someone asking you “how are you?” (in that certain tone)

Does it feel intrusive/nosy/insensitive?

How have you handled these encounters?

I look forward to hearing your experiences, thoughts and feelings.

Warmly,
Stephanie


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

 

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Photo credit: K. Lundblad

Photo credit: K. Lundblad

Having a cancer diagnosis is an unwanted event. That being said, unexpected things can come during this difficult time.

Recently, I’ve been asking my group members to think about and share their “silver linings” after their own cancer diagnosis, such as what has been positive and what has been surprising. Many have shared that they have received support and kindness from family members and friends, as well as from people they did not know well before their diagnosis. The compassion they receive from others feels good and is truly appreciated. Others said they no longer sweat the small stuff and that they have shifted their priorities as a result of their cancer diagnosis; now they spend their time focusing on the things that have meaning in their lives.

The group also talked about recognizing the importance of advocating for yourself, taking better care of yourself, making amends, letting go of anger/hostility, and educating others about cancer risks and early detection. They all shared that, before cancer, they had no prior support group experience. Now they rely on the group for support, information and connection; sharing their thoughts, feelings and experiences with people who “get it” feels good!

What are your silver linings… or are they hard to find?

Is this something you think about often? Why or why not?

I look forward to continuing this discussion.

Warmly,
Stephanie


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

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Photo credit: K. Lundblad

Photo credit: K. Lundblad

Being a parent on a good day can be challenging. Being a parent and living with cancer can be a whole different story…

Hearing the words you have cancer is scary, and often shocking. There are so many questions: what is my stage/prognosis; what treatments will I need; will I be able to work/do my daily tasks; will I survive. When you are a parent there are even more questions: do I tell my children, and if I do, what will their questions be; how are their lives going to be affected; how do I create normalcy during this difficult time; will they be scared; will they think I’m going to die? These are just some of the added questions and concerns that parents face in the wake of a cancer diagnosis.

Being a parent comes with a lot of responsibility. Taking care of our children and protecting them are top priorities. For a parent living with cancer, these everyday responsibilities are often an added stress and worry.

Children cope better when they are told that their parent has a cancer diagnosis. Kids know when something is wrong, and when they don’t know what it is, they often assume the worst. It is important to talk to your children, in age appropriate ways, about your diagnosis. Prepare them for what to expect (treatments and possible side effects such as hair loss, fatigue, nausea), and let them know that cancer is not contagious and that they did nothing to cause your cancer. These are common concerns that children have and often difficult for them to verbalize. (See links below on how to talk to your children.)

Asking for help is difficult for most of us, and when facing a serious illness, help becomes an essential part of taking (good) care of yourself. Now add children to the mix, and help becomes a must. Reaching out to people for support can be hard, but your children will do better emotionally when their routines and schedules can stay intact.

You do not have to go through this experience alone. There are many resources available to parents living with cancer. Check below for a list of resources.

I look forward to hearing your experiences as a parent living with cancer. What has been helpful? What has not been helpful? What do you wish you had known? Has cancer changed you as a parent (how or how not)?

Warmly,
Stephanie

 

Articles On How To Talk To Your Children About Your Cancer

Resources For Parents Living With Cancer


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

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Photo by: K. Lundblad

Photo by: K. Lundblad

As an oncology social worker, I feel fortunate that I love my work and that I’m always learning. During my breast cancer support group this week, a group member shared a different perspective that shifted my thinking on a particular topic.

Our group discussion turned to well-meaning things people say (a.k.a. sayings which are often annoying and/or off-putting). One group member shared that she doesn’t like when people say to her “you’re so strong” or “you’re so brave” or “I don’t think I could go through this experience as well as you are”… or all of the above!

In my groups, this topic has come up countless times. Typically everyone (including me) agrees that these sayings sound patronizing and that they are often said to make the other person feel better… but then another group member shared that she feels differently. She shared that when someone says these words to her, she hears validation. She also hears that she is strong and brave, and that she is handling her situation really well under very difficult circumstances. This member also shared that she hears comments that don’t feel good… but that these comments, being discussed in the group, feel supportive and good to her.

The group and I really appreciated hearing her perspective. She enabled us to see that these comments can be supportive and validating, and not just unwanted sympathy as many of us assume.

How do you feel when someone says to you, you’re so strong; you’re so brave; I don’t think I could go through this experience as well?

I look forward to hearing your thoughts and to talking more here.

Warmly,
Stephanie


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

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Photo Credit: K. Lundblad

Photo Credit: K. Lundblad

I was in the waiting room of my dentist’s office, and I happened to see an issue of People Magazine (October 2014). The cover story was titled: “A Terminal Cancer Patient’s Controversial Choice – My Decision to Die.”

On the cover was a picture of a healthy looking young woman. I was intrigued and wanted to learn more. The woman at the forefront of this controversial decision is 29-year-old Brittany Maynard. She was diagnosed with a very aggressive malignant brain tumor; her doctors gave her six months to live. After hearing the grim prognosis, Brittany and her family went into overdrive looking for something, anything that could possibly change her situation or help her in some way.

While Brittany was searching for treatments, she discovered articles on death with dignity. Currently, there are five states in the U.S. that have passed “right-to-die” laws. These laws allow people who have a terminal illness to participate actively in their death with prescribed medication from a physician. Brittany believed that it was important for her to have (some) control over her death. She did not want to go through the horrific process of losing her mental and bodily functions, which was imminent. She also wanted to protect her family from what she knew would be an intense continual decline.

After making this big decision she and her family moved to Oregon (a right-to-die state) from California. On November 1, 2014, in the comfort of her home, Brittany died with her family and friends by her side…just the way she wanted.

What thoughts come to mind?

Is this something you have ever thought about…why or why not?

This is a sensitive end-of-life topic and I look forward to hearing your thoughts, however you feel about this issue.

Warmly,

Stephanie

Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

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Photo Credit: K. Lundblad

Photo Credit: K. Lundblad

Asking for help is not easy for most of us. There can be many reasons for this — for example, to avoid feeling a loss of control, showing weakness or just being vulnerable. It’s frustrating, scary and overall difficult when we’re not easily able to (or just can’t) do the things that we are so accustomed to doing. Daily routines, chores, tasks often take all our energy.

Ironically, many of us are happy to help others in need… so why is it so hard to be the person receiving help?

Below are 5 reasons (and there are many more!) why you should consider asking for help/support.

  1. Decreases stress – You’ll have one less thing on your plate.
  2. Saves energy – You’ll have more strength for the things you want to do.
  3. Lessens isolation – You’ll be connecting with your support network..
  4. Makes others feel good – You’ll be giving others something that they can actively do to help.
  5. Makes you feel good – You’ll be amazed by the people who want to be helpful and supportive.

If you’re not already asking for or receiving help, I hope at least one of these 5 reasons will make you reconsider.

Is it hard to ask for help… or is it easy? Let me know what you think; I look forward to hearing your thoughts and experiences.

Warmly,

Stephanie


Stephanie Stern, LCSW-C is an oncology social worker and the moderator of The MetaCancer Foundation’s Mosaic Online Support Community.

The MetaCancer Foundation provides information and resources focused on the unique psychological and emotional aspects of living with metastatic cancer. Mosaic is a free online support service for people living with metastatic cancer and their loved ones.

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