The skilled surgeons at OHSU removed the tumor a couple days later and most of us felt it was a close call, assuming they had removed the tumor and Christy would be fine and make a full recovery. Only a few short weeks later she was diagnosed with Glioblastoma. Before her diagnosis, I don’t remember ever even hearing the word “Glioblastoma” and had no idea what it was. My wife received some information from a friend who had experience with this particular form of cancer. He introduced us to Dellann Elliott, CEO of the Chris Elliott Fund. Dellann gave me a lot of information, introduced me to exceptional health care providers, and quickly became a trusted resource.

The rest of the story belongs to Christy. It’s her journey and we are here to support her, which is why I’m walking this year, for the first time ever – to support friends and family fighting brain cancer. I walk because I want to be there for others when they get that call in the early morning hours and have no idea what Glioblastoma means, or how they should react to news that a dear friend has a malignant brain tumor.

Glioblastoma is a devastating disease that 22,000 people will be diagnosed with this year. Half of those diagnosed will live more than one year and less than 5% will make it past 5 years. As bleak as the statistics are, progress is being made but it depends on support. So while I’m walking to support Christy, I’m also walking to support the researchers, doctors and social workers that are working to cure this disease. I walk with team CEF because Dellann Elliott and the Chris Elliott Fund helped us find answers. I want to make that information available to everyone that needs it. I want to support the people that do not yet know they need, so when the time comes they have everything they need to fight this disease.

Please join us in the 2011 Seattle Brain Cancer walk. Go to www.chriselliottfund.org and look for the “Walk” link under the events tab (direct link).

Being a caregiver is a taxing experience. You are being asked to juggle the needs of your loved one along with those of any additional family members, not to mention attending to your own self-care. Easier said than done, right? Know that you are not alone. Caregivers need just as much support as their loved one dealing with the illness.

 It is important to be mindful of any changes and signs of acute stress you may be experi­encing. These include:

• Changes in Sleep

• Changes in Appetite

• Exhaustion/Fatigue

• Withdrawing from friends and Family

• Feeling overly emotional/angry

• Feelings of overwhelming anxiety

 These are all normal reactions to the situa­tion you are facing. However, if they persist, then it can start to affect your own health. It is important to recognize these signs of acute stress so we can address them before it turns into chronic stress and burnout.

 It is absolutely essential that you take care of yourself. You cannot possibly begin to care for another if you aren’t taking the time to care for yourself. Below are a few things you might want to think about putting into place; start with just one if you are already feeling overwhelmed. Sometimes just having one small thing in place can go a long way towards your sanity and relief.

 Nutrition and Rest

It may sound very basic, but you need to eat well and rest when you are able to. This means making sure you eat enough fuel to keep your strength up and rest when you have the opportunity to help with your stamina. Make sure you drink plenty of water. And don’t forget to take a deep breath every once in awhile – deep breathing can help with fatigue and anxiety. Make time for yourself to relax and rejuvenate, even if it is only 15 minutes per day – take the time.

 Educate Yourself about Brain Cancer

The more you know, the better you’ll know what to expect and you will feel more in control of the situation. Ask doctors and nurses about your loved one’s condition and what you as a caregiver need to know. The Internet is also a very good way to learn more about your loved one’s disease. The National Brain Tumor Society  (www.braintumor.org ), The American Brain Tumor Association (www.abta.org ) and the Brain Tumor Foundation (www.braintumorfoundation.org), The Chris Elliott Fund (www.chriselliottfund.org )  are excellent places to start. As you research, write any questions or comments you may have for the doctor and take them to the next appointment.

  Delegate Tasks to Family and Friends

You will find friends and family are more than happy to help in time of need. You just need to ask, or more often than not just need to be ready with “tasks” when they volunteer to help.  Things like cooking meals, running errands or cleaning can all be delegated to friends and family.  Have a list of “tasks” that others can do ready, it will help when you are tempted to give the standard response of “I don’t think there is anything you can do to help right now.” Having someone else pitch in and help you with these tasks will leave you with time to concentrate on providing care for your loved one. If you need help in organizing a “Share the Care” schedule, you can visit www.sharethecare.org .

 Get Organized

Many caregivers also are responsible for maintaining medical records, insurance claims, and finances, not to mention medica­tion and eating schedules. The key to success here is organization. Keep medical records neat and accessible by storing them in a large file, organized by date. Medicine schedules can be created with a spreadsheet, then printed out daily or weekly, or use a blank template of a medication log.  As each dose is given, you can check it on the sheet with the time. The same can be done for eating schedules.

Join a Caregiver Support Group

Whether it be online or through the hospi­tal, a caregiver support group is an excellent way to meet others going through the same thing as you. It really does help to have someone who can provide you with tips or can identify with daily care giving life. The Brain Tumor Caregiver Support Group at Swedish meets on the 1^st Wednesday of the month.  The Brain Trust runs an online support group for caregivers   (www.braintrust.org ). Cancer Lifeline (www.cancerlifeline.org ) and Gilda’s Club (www.gildasclubseattle.org ) are also great resources for you. They offer a multitude of services, groups and classes for the whole family.

When to Seek Help

If you feel like you may be experiencing caregiver burnout, see your primary care physician. He or she can make recommen­dations based on your symptoms and personal information. Some caregivers find relief in regularly talking to a therapist, social worker or religious counselor while caregiving.

If you need to speak to a caring, trained, professional right away no matter the hour, then you can consider calling the 24 hour lifeline at 1-800-255-5505. The phone line is answered by trained volunteers at Cancer Lifeline 24 hours a day.  If you have thoughts of hurting yourself or your loved one, go to your local emergency room or call 911. Severe burnout can result in these feelings, but help is always available.

Caregivers have a tough job, and my advise is this:  do the best you can in each moment and be open to receiving help – for your sake as well as your loved one.   

Stacie Beam-Bruce, MSW
Chris Elliott Fund Integrative Care Specialist
Neuro-Oncology Social Worker
Ben & Catherine Ivy Center for Advanced Brain Tumor Treatment
Swedish Neuroscience Institute

We have to have funds in order to give to research.  We have to have funds in order to pay professionals and not always rely on volunteers who already have a fulltime job.  We have to have funds to make a difference, and I am quite passionate about this issue.

People ask me all the time, why isn’t there more being done.  I have to say, I am doing all I can with myself and with my volunteers, and the next question is have you given lately?  It all starts with each and every one of us to end this disease. 

If you feel like helping and partnering with the Chris Elliott Fund, because you have decided after clever and thorough investigation that this is the charity you have chosen, the charity or fund that can make a difference with this disease, then here are a few links for you to take action:

http://www.chriselliottfund.org/getinvolved/donate.html

Commercial PSA link with Jean Smart below.

http://www.youtube.com/watch?v=bToqSpBT7Bk