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TOPICS THAT ONE LIKES TO TALK ABOUT...
Having a brain tumor brings up a host of issues that the patient or caregiver can be overwhelmed by. Conversations can be awkward although some topics can be more awkward than others. Survivors are embarrassed to talk about things that are very personal to them and these neglected topics can cause more grief in the long run over the course of treatments and survivorship.
Being a survivor and working closely in the cancer and brain tumor community, I’ve noticed several topics that affect many of us, yet hardly any one feels comfortable bringing up.
Physical changes. Cancer and brain tumors change how we look. How we look affects how we feel. Treatments and medications can cause hair loss, weight gain or loss and acquired conditions can make it difficult to maintain a normal body composition, cause partial paralysis to various areas of the face or body, flat affect can make a survivor appear not interested or unemotional when really, they aren’t able to express their emotions, a survivor might have to use assistive devices that makes them stand out or may have visual issues that show in how a survivor is able or unable to focus their eyes or gaze. These are all things that survivors have little control over yet can easily make us feel as if we're being judged by our peers. Nobody likes to talk about feeling ugly and survivors will often skirt around this topic because it’s deeply personal.
Sexual Development and Fertility- The ability to develop sexually is often stunted due to brain tumors (either because of the damage to the brain caused from the tumor itself or from treatments, also depending on tumor type and location). An adolescent might have to go through forced puberty and can appear much younger and different than their peers. Even if a child isn’t concerned about this when they’re diagnosed, entering the age of puberty can be a time filled with a lot of questions and feelings of inadequacy because everyone around them is taller, more developed and more interested in having boyfriends and girlfriends while the survivor might feel uninterested although they still have the need to keep up with their peers.
Talking about fertility is difficult as well. Many doctors don’t bring it up and survivors might not bring it up because they feel embarrassed. There is a stigma associated with being unable to have children, a person struggling with infertility may feel "less-than" and there is also fear of rejection from a potential partner who wants to have children.
Relationships – Relationships and dating are awkward for everyone. Explaining to a potential partner why you are on medications, might use an assistive device or even why you can’t stay out past 10p.m. can make a survivor want to avoid dating and relationships entirely rather than feel insecure in the dating field.
Although nobody wants to talk about these topics, it doesn’t mean that they aren’t on the minds of survivors. They are all things that are important as rites of passages for different life milestones and having difficulty obtaining them plays a role in how we feel about ourselves as well as how we get to know others.
Finding appropriate outlets to address these topics can be difficult but as the number of cancer/tumor survivors grow, so do organizations and support services that acknowledge our unique needs. Upon having the opportunity to speak with other survivors, many of us find out that a lot of the “weird” thoughts or questions we may have had are actually very common among those who have gone through something similar!
If you are or know a survivor who you think would benefit from social support, please contact Stacia (firstname.lastname@example.org) to find out more about our teen and young adult brain tumor survivor program.