What people with brain cancer want you to know

Many of our families living with brain cancer contributed to this article–sharing what they hope is helpful advice for those who, most of all, just want to be helpful! 

1. “Don’t assume just because someone looks fine on the outside that they are OK.”  Variations of this comment came up in multiple interviews with our IoH families affected by brain cancer.   Wives described husbands who sleep afternoons in order to save up energy for cheering at a child’s big game that night, or the frustration of large gatherings where others may not understand that noise and questions can be too exhausting.  

2. Anxiety can accompany any activity, and sometimes only a close caregiver is able to recognize signs of an impending seizure or other complication.  

3. “You have no idea how exhausting it is to go and be willing to get out sometimes and be willing to do stuff.  We need a moment every now and then, to re-calm our brains.”

4. Respect how a family struggling with this diagnosis is choosing to spend their time.  So you see Dad out on the golf course with his son, and wonder why he is well enough to golf but not work.  Don’t. Realize that you have no concept of what happens off the course–the enormous amount of preparation and energy that goes into many outings with a terminally ill parent.  That dad has limited time and energy, and how his family chooses to spend it is what is ultimately right for them. This rule applies to social functions as well.

5. Related to #4, never, ever say, “You are so lucky that you don’t have to work” to someone who is out on disability.

6. Saying “You look great” may not be the most helpful thing to say.

7. “We will keep you in the loop about our health.”   Depending on individual circumstances, a patient may have scans every few weeks. Don’t get offended if you don’t know about one before it happens.

8. Want to know how you can help? It is often hard for families to ask for help, and sometimes they don’t even know what they need.  The first rule is to simply show up. And, offer to do things that you know you need done yourself. Take their trash cans back from the road, or snow-blow their driveway when you do yours.  Have kids in the same activities? Offer to do some of the driving. Or, take the kids for a fun outing on a day off from school. “We were always so relieved when our kids were taken care of, distracted from what was going on at home, and happy,” said one mom.  

Angie Howell is constantly inspired by the people she meets in the Inheritance of Hope family.  Her connection to IoH goes back to Davidson College, where she met Kristen Grady Milligan the first week of their freshman year. Kristen eventually started Inheritance of Hope with her husband Deric, and Angie heard about their work at a college reunion.  In 2010, the two former hallmates got back in touch, and Angie became involved in IoH shortly afterwards. She has served as a Legacy Retreat volunteer, Coordinator, and now, as Communications Manager, Angie helps tell the stories of IoH. Read more Inheritance of Hope blogposts >>