In both cases you may become the caregiver for a short or lengthy period. It is very difficult to see someone you love suffer. You may be partnered with a previvor or survivor who has lost their fertility, which also affects your hopes and dreams. Their bodies may not recover from surgery in the way hoped, so you may also be dealing with that loss. You may be desperately afraid of losing your loved one and dealing with your own fears and insecurities. You may have children or family members that also need your attention.
A shift in roles and emotions is almost certain. It is natural to feel angry, frustrated, exhausted, alone or sad. Caregiver stress — the emotional and physical stress of caregiving — is common. People who experience caregiver stress can be vulnerable to changes in their own health. As a caregiver, you may be so focused on your loved one that you don't realize that your own health and well-being are suffering. Too much stress, especially over a long time, can harm your health. The emotional and physical demands involved with caregiving can strain even the most resilient person. That's why it's so important to take advantage of available resources and tools to help you provide care for your loved one. Remember, if you don't take care of yourself, you won't be able to care for anyone else.
■ Accept help. Be prepared with a list of ways that others can help you, and let the helper choose what he or she would like to do. For instance, one person might be willing to take the person you care for on a walk a couple of times a week. Someone else might offer to pick up groceries or cook for you.
Focus on what you are able to provide. It's normal to feel guilty sometimes, but understand that no one is a "perfect" caregiver. Believe that you are doing the best you can and making the best decisions you can at any given time.
■ Set realistic goals. Break large tasks into smaller steps that you can do one at a time. Prioritize, make lists and establish a daily routine. Begin to say no to requests that are draining, such as hosting holiday meals.
■ Get connected. Find out about caregiving resources in your community. Many communities have classes specifically about the disease your loved one is facing. Caregiving services such as transportation and meal delivery may be available.
■ Seek social support. Make an effort to stay well-connected with family and friends who can offer nonjudgmental emotional support. Set aside time each week for connecting, even if it's just a walk with a friend.
■ Set personal health goals. For example, set a goal to establish a good sleep routine or to find time to be physically active on most days of the week. It's also crucial to fuel your body with healthy foods and plenty of water.
See your doctor. Get recommended immunizations and screenings. Make sure to tell your doctor that you're a caregiver. Don't hesitate to mention any concerns or symptoms you have.
You are a Loved One
You are reading this because someone in your life is a previvor of cancer. Yes, there has not been a cancer diagnosis yet. But, this does not mean that your loved one is not plagued by many of the same fears and issues that a cancer survivor faces. In fact, there has been research to support that learning the news one has an inherited genetic mutation putting them at high risk for cancer is just as traumatic, especially if that person has family members and children who may also be affected. If you jump to the previvor page for a moment, there is a list of some of the issues your previvor may be facing.
■ Support their decisions
■ Ask them what they need from you
■ Really listen
■ Express your care and concern
■ Make, or arrange for, meals; babysit; drive them to appointments
■ If possible, attend doctors appointments and take notes
■ Remind them how much you care, especially in the case of romantic relationships where body image and sexuality issues may be a factor
■ DO NOT Expect them to 'just get over it'
Ways to support a loved one who has been diagnosed with hereditary cancer are not much different than for a previvor. The outcome is the same as far as the recommended surgeries, but the cancer survivor may be required to go through gruelling chemotherapy treatment and/or radiation in addition, so their recovery time may be longer. The bottom line is they need your support, both physically and emotionally.
Many previvors have grown up with cancer surrounding them, so have had time to process the possibility of carrying risky genes. A cancer patient may not have been aware they carried a risky gene until their cancer diagnosis, adding to the trauma. Recent research has shown one does not have to have an obvious family history of cancer to carry risky genes, because in the study groups up to 50% of the mutation carriers had no family history.
As you can see, the journey facing a typical previvor is a long one. Your loved one may be at any point in their journey, from just starting to think about having genetic testing to dealing with the after-effects of preventative surgery. Their needs will change as they pass through each stage of their journey, but one thing is likely to always remain the same. They need your support. This can come in a variety of ways, but here is a good short list:
Since its discovery in 1995, this type of hereditary cancer has changed from one type of cancer, caused by mutations in only one gene to several types of cancer, caused by mutations in any of many different genes. As a result, all labels used to describe this syndrome, such as ''breast cancer gene'', ''BRCA'', ''hereditary breast and ovarian cancer'' and ''HBOC'' tell only part of the story, leaving out well over half of those who are affected. To better serve our patient group, we are in the process of changing our name and updating all resources to reflect the fully inclusive and future forward RISKY GENES™ brand. We ask for your patience during this process.