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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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