Just been diagnosed with GIST?
The first and foremost thing that you need to know right now is that whatever you are feeling at this moment is completely normal. There is no right or wrong way to feel when receiving a cancer diagnosis. The sooner you accept this, the sooner you can begin coping. Do not feel ashamed or worried about your reaction to the news that you have cancer. Chances are that others have felt the very same way.
You may have already asked yourself questions like, “Why me?” or “What did I do to deserve this?” Again, this is a normal part of your coping process. No, this is not your fault. No, you are not being punished for something you did in your past. And as for ‘why me?’, we just don’t know. Cancer doesn’t pick and choose people; it’s not fair, but this is the reality we live in.
You may also be asking yourself or others the question, “Am I going to die?” For most of us, this sentence represents our deepest fear. Commend yourself for facing it, and articulating it.
Repeat this sentence to yourself: “Cancer is not a death sentence.” The outlook for many people diagnosed with cancer is very good. The number of cancer survivors is growing, thanks to targeted treatments like the primary one for GIST – Gleevec. Doctors and scientists have made incredible strides in GIST research and treatment. Many more people are alive today with stable or no evidence of disease (NED).
Many people with GIST can carry on with very little change to their lives. Just as GIST is not a death sentence, neither is it a reason to withdraw from the world. Many side effects of common GIST treatments are mild or get better over time.
Right now, you may be reading these words, but not really hearing them. That’s okay. These words represent a place that you need to get to on your own. What you need to focus on now is getting together a support system that will help you through this early stage so that you can take care of your mind and body.
Start to assemble your support team by finding a patient champion. This may be your spouse, significant other, family member or friend. This is someone who will accompany you to appointments, help you do research, and guide you through upkeep of your medical records, and management of insurance and financial records. You may choose several people to help with these tasks. Be sure to include someone who will listen to you and encourage you throughout your journey.
At diagnosis, your mind is filled with many different facts, emotions, plans and scenarios. Here are some helpful tips that may help you to step out of the ‘fog”:
- Get informed –You have already taken this step. You found the LRG. Many people throw themselves into research when they are first diagnosed because they want to learn as much as they can about their disease. While this is a smart idea, it shouldn’t stop there. Support groups are there to offer each other support, a helpful ear to listen, and resources. Where better to go for information than to others like you, many who have been in the trenches longer than you. Browse this site. Check out the information in the About GIST section and Get Support. You will find the names of GIST specialists here, as well as the opportunity to join our email community, where you will be connected to hundreds of patients and caregivers who can provide helpful hints and tips.
- Verbalize your concerns – Use your support system to express what you are going through. Bottling up intense emotions is unhealthy, and can lead to undo stress.
- Take care of yourself. This is a difficult road you are traveling on. Take time each day to do something you enjoy. Find an activity that restores you and relieves stress, whether it is a hobby, listening to music, or meditating, it will distract you from your worries and help you to relax.
- Exercise –As long as your doctor feels you are ready and up to it, exercise a little. Start off slowly if you feel uncomfortable. Try yoga or stretching in your own living room, or taking a walk. Exercise can make you feel better both physically and mentally.
- Keep your spirits up. This may sound like a band aid on a much bigger problem, but it’s not. Don’t let yourself be overwhelmed by sadness or anxiety. While it is completely normal to have these feelings, there are ways to relieve them. Talk to someone who makes you feel good. Do something that makes you happy. Keeping a positive attitude affects the overall quality of your life. You will need this on your journey with GIST.
Use these tools to begin your GIST journey. Armed with our support system, your new knowledge and resources, you are ready to face GIST head on. Take a deep breath, and remind yourself, “I can do this!”