Everything Changes - The Guide to Young Adult Cancer

By Sarah J. for everythingchangesbook.com

I remember when I was twelve my grandpa was dying of lung cancer and I couldn’t even speak as I sat in his hospital room. The grown-ups kicked me out before I was able to say good-bye.

When I was diagnosed with Hodgkin’s my kids were four and five. I didn’t want them to feel powerless like I did with my grandpa, but I didn’t know how to help them because having cancer made me feel so powerless.

And then I remembered a time before cancer that I was lying on the couch with a pretty bad cold and they made me soup. What they actually made was cold water, lettuce, carrots, turkey, crackers, and bread in a bowl along with a huge mess in the kitchen, but to them it was soup and their faces beamed with the pride of knowing their soup would help me feel better. I started remembering other similar instances of their efforts to help me like bringing me little teacups of water, washing the mirror on the bathroom door with soap, and spending hours scrubbing the fireplace doors with sponges. I thought that maybe with a little direction, there could be something to this.

I let them help whenever they offered without worrying about the mess they might leave behind. When I was too tired or in pain I would ask them for water, my pill bottles, a snack, or anything else I knew they were capable of. I even let them wash my hair after my lymph node biopsy when I couldn’t lift my arm. These were not just chores, they were lessons in kindness and with each task I could see that I was giving them some power over the situation and that they took pride in every little thing they could do to help.

It’s hard to parent with cancer, but it’s easy to give your kids a little power and in doing so, you may feel a little less powerless yourself.

How old are your kids? Have they been behaving differently since your diagnosis? Have they ever offered to help you out? How did it go?

Read more about young adults parenting with cancer in the book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

By Jackie B-F

“What’s that scar on your neck?” I wasn’t even 20-minutes into the first day of orientation for my Master’s program and my scar had already been noticed. I have been debating the whole summer about how to disclose my cancer at my new school. I am proud of my diagnosis and I am happy to talk about my experiences with cancer, but I didn’t want cancer to be my first introduction to students and faculty. I’ve thought about some ways I can disclose my cancer at school:

I can choose to only tell some of truth. When asked about my scar at orientation, I was caught off guard and told the student about my cancer diagnosis. However, there are other ways to disclose my medical conditions that don’t involve the “C-word.” I could have said, “I had surgery” and left the conversation at that.

A wardrobe change might also be in order. I’ve accumulated a lot of cancer shirts and bracelets since being diagnosed, and I wear them proudly! However, I’ve chosen to set them aside for at least the first few weeks of school. That way I can disclose my diagnosis in a more organic way and not because my shirt says so.

I may not want to disclose to everyone at school, but letting my professors know can be very helpful. If I end up missing a lot of class, they deserve to know why, and some professors may be willing to help me catch up during their office hours. Professors are often supportive and can be a good advocate. I’ll probably let my professors know within the first few weeks of classes.

Ultimately, I have to do what feels right for me, and remember that I was accepted into school for my smarts – not my cancer.

We are asked to disclose our cancer in a variety of settings. How do you choose who to tell and who not to tell? Have you ever had to make up excuses on the spot to cover up your cancer?

To learn more about disclosure at school, your legal rights, and how the office of student disabilities can help you, read the book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

By Kristen Schindler

Cancer has a way of destroying the parts of you that you define yourself by. I felt cancer destroyed my ability to push my body to do great things.  I am an athlete, but my treatment for Hodgkin’s Lymphoma sucked away most of my energy. I played softball in college, and have invested years upon years into my athletic career. It took only six months of chemotherapy for my body to lose most of the muscle and endurance I had built up over 12 years.

I had expected to struggle physically while I went through treatment. And I even planned to give my body some time to recover once my treatment had ended.  However, I was shocked when three months out of treatment, my energy had not bounced back according to the three month timeline my doctor had given me.

This process of rebuilding muscle, strength, and lung capacity, is anger producing and depressing at times. It is a constant comparison to the pre-cancer me. I am unsure if I will ever be the athlete I was before and I do not have time to train and workout like I did when I was in college. I am terrified that my body will never fully recover from cancer, and my athletic ability is the most glaring indication of that.

I have slowly learned to give myself a break, and relish in my small accomplishments. I still want more, but I am realizing I am in the midst of moving forward. I played softball this summer, and I began to see my old self begin to shine through while I pitched multiple games each weekend. Cancer temporarily took away certain self defining characteristics, but my drive and ambition to be better and push myself is one characteristic that has not been altered.

Were you an athlete or avid exerciser prior to cancer and how has your identity changed since your diagnosis?

To learn more about how young adults handle rapid changes in their identity after being diagnosed with a chronic illness, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

By Kairol Rosenthal

During my stint with cancer, I’ve attended both thyroid cancer and young adult cancer groups.  They ranged from excellent to abysmal.  Here are six tips I’ve come up with for making the most out of a support group experience. I’m curious if you’ve ever tried them:

1. Contact the leader first to see if it’s a good match for you. Ask if participants have a similar disease type or variation as you, what stage of their disease are they in, if the focus is emotional support or swapping practical medical coping strategies. If age, relationship status, race and ethnicity and other personal factors are important to you, ask about the demographics of the group.

2. Try a few meetings. Sometimes groups vary hugely from meeting to meeting depending on who is there and what issues are coming up.  Give it more than one shot.

3. Go out on a limb. If you want to discuss an issue that nobody is talking about, be daring and bring it up yourself.  Many support group participants are often waiting for that one person to talk about the elephant in the room.

4. Find your wonder twin. Sometimes a support group is a great place to meet one person who you really connect with.  It is perfectly fine for you to ditch the support group and continue to meet for one-on-one support with each other over coffee.

5. Chose a format that’s right for you. Telephone, online support groups, social networking groups, one-on-one peer support through matching organizations. People have even told me that reading Everything Changes was their support group.  If one format of support group isn’t right for you, find one that is.

6. Don’t feel guilty or badly if you are not a support group person. The point is to get support if you need it and it doesn’t have to always come from a group.  I personally find better support through my friends who do not have cancer than I do through organized support groups of people my own age living with my disease.  I’m okay with that.

Have you ever attended a support group?  What made it either good or not so hot? Got any ‘support group success tips’ to add to the list?

Check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, it’s like a portable, paperback support group.