snowflakeThe holiday season is quickly approaching and the stress of the holidays can bring up mixed feelings for many people. When you are struggling with a cancer diagnosis such as GIST, the holidays can be an extra challenging time of year. For newly diagnosed GISTers and their families, this may be their first year celebrating the holidays. Long-term survivors and their caregivers may have created a routine that works best for them during this season. Of course, there are patients and caregivers who fall somewhere in the middle and are still learning to adjust to their diagnosis during this time.

We all have expectations of what our holidays should look like and often feel a sense of failure when it does not pan out the way we envisioned. It is always okay to express your concerns and needs during the holiday season as well as set boundaries with others.

It is important to keep in mind that while people may be supportive, not everyone is good at providing the same type of support.

snowflakeOne of the ways to remember the different types of support a person can offer is with the acronym FDR – Feelings, Doers, and Respite. Some of the people in your ‘support circle’ may be good at dealing with feelings and emotions. They may be able to provide you a listening ear or a shoulder on which to cry. Those who are doers may not deal with emotions well and are best at helping you out with daily activities and chores that need to get done. And lastly, respite. These are the people in your life who are good at distracting you during a difficult time and can help take your mind off things. Identifying these different kinds of people in your life can be helpful in managing your own expectations.

Here are some thoughts and comments from GISTers and caregivers about their concerns and challenges during the holiday season and how they have learned to navigate the holidays:

“I was glad the holidays were over as I felt sad that this might be the very last Thanksgiving and Christmas that I experience. It has been a year now since my diagnosis- and a difficult one at that including recovering from major surgery recently- but my numerous tumors are currently stable, and I am feeling physically back to my normal self. It has taken me this full year to finally be at peace with my cancer. I am so looking forward to the holidays this year – celebrating being alive and with family. My priorities in life have changed a lot and I am motivated to take advantage of my feeling good right now and get involved with doing volunteer work-not just during the holidays but throughout the year.”

Bettina – GISTer since 2018

“Enjoy the holidays because things always come out better after they get really bad… But once I found the worst then it could only get better. Be close with family during holidays. Family is good to me. You are much more comfortable about dying when your family loves you and they are always there for you and then you feel more comfortable. Celebrate every day with a glass of champagne.”

Manuela – GISTer since 2015

“We had long talks at night about taking care of myself and she [sister] was very kind. This started my journey to accept that I have cancer but not allow cancer to have me. I began to be appreciative for everything big and small and found a myriad of things to be happy about. This holiday I am looking forward to having a blast. I have loaded up the wine rack, made plans to visit family members and have already started Christmas shopping. I am thinking of having a big party for Christmas at my house. I had one prior to getting sick and it really turned out well.”

Rob – GISTer since 2016

“Frankly, I have no memory of the holidays that year. I believe all I did was cry. Maybe not all the time, but a lot. I decided to give myself a year to process having a cancer diagnosis, and if crying and being afraid were part of it, so be it… It took some time to learn to live a different life than I imagined. I had a great amount of guilt that my husband had a sick wife to take care of. Over time, and with the support of LRG, I began to educate myself. With knowledge came a sense of power in the direction of my future. I changed oncologists a few times until I found the best one for me. I’m no longer living in fear. It may not sound like it from reading my story, but I am a very strong person. My cancer diagnosis humbled me. I’ve always been the friend to others with problems or health issues. Now I sometimes need help, and it’s ok to ask for it… This year, my family will join us for thanksgiving. We never take each other for granted and spend much of our time together laughing. Maybe it’s age, maybe it’s cancer, or both. Life is sweeter, family is closer, friends are dearer.”

Kay – GISTer since 2012

“Heading into the Holiday season has been on my mind. I intend on doing all the things that I constantly postpone until next Christmas – I love toy trains, and I have a fairly good size collection. Most of these trains run outdoors and are rather large. I haven’t set them up for probably the last ten Christmas’…Well guess what? I intend on setting up at least one or two sets in my home!… I know that probably sound ridiculous to most people, but when you think you might actually die – it does change you in a very profound way, at least to me it did. I have no idea how long I will live, but I’m hoping I’ll be around to at least see some grandkids.”

John Paul –  GISTer since 2019

“I’ve learned to ask questions of our GIST oncologist, and advocate for my husband when needed. I’m not afraid to ask for help, and know it’s okay to feel bad, sad and maybe even angry once in a while. I wish no one had this disease, but at the same time, so much of my life has changed for the better while helping my husband. Part of that change is to pass on what I’ve learned as a caregiver. I wish all a Happy Thanksgiving Day and wonderful holiday season. There is a life after GIST!”

Marlene – Caregiver since 2010

“This is my 16th year of living with cancer. It has become so ingrained in the lives of my family that it is barely ever mentioned. I do not act sick, look sick, or really talk about it unless asked. I realize I’m not the typical cancer patient though. I don’t see my cancer as a curse anymore, in fact I see it as a blessing. Cancer is the vehicle to which I was motivated to chase virtue and improve myself and my life. So, when anyone wants to talk about cancer, I’m happy to do so because I didn’t always feel that way. To give meaning to suffering is the greatest gift I have to give, and it seems that is one of the vocations I have in life.”

Jason – GISTer since 2003