Do you have a friend with a brain tumor? Do you have friends who have friends with a brain tumor? Do you have a family member, perhaps a distant cousin with a brain tumor? How about some random acquaintance at work, does he/she have a brain tumor? Does a close family member have a brain tumor? Do you have a brain tumor?
Every body knows someone who has or had cancer of some kind in other parts of their bodies – there are really too many out there. But chances are you know someone who’s experienced living with a brain tumor – primary or secondary. You may have known someone who died from brain cancer. Maybe you just heard about someone who was diagnosed with a brain tumor, but you really don’t understand what that means.
When you start to look around and listen to the rumblings, you and everyone around you has been touched by brain tumors/cancer in some way.
The 120 different types of brain tumors are indiscriminate of age, sex, ethnicity, race. There are no known causes. There is no known cure. There are rarely severe symptoms to prompt CAT scans or MRIs to identify that there’s a brain tumor growing. The first symptoms for most are a seizure, motor control issues or speech difficulties. Not all tumors are cancerous, but they all impact us since they’re in the control center of our bodies. Some tumors start off benign and then grow into a malignant tumor that tries to devour your brain. Regardless, treatment options are very limited.
In the 18 months since my own diagnosis with a brain tumor/cancer, I’ve learned of far too many acquaintances or acquaintances of acquaintances that have also been diagnosed with a brain tumor or cancer. Is it that the numbers are increasing or is it like that car phenomenon – when you ‘never’ see a car until you have a conversation with someone about said car and then you see them EVERYWHERE.
Hopefully, it’s not an increase in cases. It is disconcerting though when all of these other cases start appearing before your eyes once your own life has been touched by brain tumors/cancer. Those people fighting with their brains have always been there, we just haven’t noticed. It’s enough to make you feel a level of guilt for not knowing, for not doing more to support them and their families. Now that you understand what a brain tumor or brain cancer is capable of doing to you and your family, you feel guilt for not supporting people you never knew existed before you became a member of this horrible, elite society.
As is often the case when someone you know is first diagnosed with cancer, you don’t know what to do to help. You may not know how to start a conversation. You’re afraid to ask. You make so, so many assumptions about what’s happening. Or perhaps you ignore it altogether because it terrifies you. When you see them and they don’t look sick, maybe you’re relieved that they’re ‘cured’ and don’t need to address their experience.
Having gone through the bad days, the REALLY bad days, and have been lucky enough to have many good days, I’d offer a few tips (from my perspective) on how to interact with someone diagnosed with brain cancer:
1. We will designate a family member who understands what’s happening to provide updates to those people who need to know. This person will NOT be the patient, their primary caretaker (in my case, my husband) since they are already over their heads with shock, research, information overload and serious decision-making. They’re dealing with fear, terror, worry, anger and healing. Please do not try to ‘go around’ this designated family member. Respect our privacy as we process how are lives have changed dramatically and figure out what to do next.
2. If you want to help, offer to have the kids over for play dates (not therapy, PLAY), drop off food – this is NOT the time to try that new recipe by the way, help take care of the animals left at home, make sure the garden stays alive, drop off movies or magazines… Notice these are all things that do NOT involve short or long visits. Everyone is overwhelmed and exhausted – having to ‘entertain’ will just make that worse (and don’t say you don’t expect to be entertained – when someone comes into your home, you naturally feel like you need to be a good host.)
3. Try not to start every interaction with ‘How are you?’ Because, really, you know. We’ve just received devastating news and have likely gone through brain surgery and are facing months on chemo and radiation. How would YOU feel? I understand that it’s a natural question and its well-intentioned. But if it’s asked too many times, it begins to feel like you should just make a recording and hit PLAY each time it’s asked.
4. Help take care of my caretaker – he’s scared out of his mind too. He’s trying to be my advocate, make huge decisions, keep it together emotionally, take care of our children, and be my body-guard – trying to keep people away while we process what’s happening as a couple. Once things calm down a little, take him out for a beer, LISTEN to him, go for a hike to look at a beautiful view, remind him to take care of himself, ask him if he needs anything (or better yet, make some suggestions on how you can help), let him cry without judgement or attempts to placate and remind him to shower and brush his teeth.
5. Remember that just because I have cancer, I’m still me. I have not regressed in age – don’t treat me as if I’m all of a sudden a child again. Condescension or offering theories on why I may have gotten cancer or suggesting things I might want to do in terms of treatment doesn’t help. At all. Not one little bit. Respect my decisions about treatment, period and treat me like the adult I am.
6. My cancer is not about you. If I don’t want to talk to you or see you, don’t take it personally. If I ask you to leave after a short visit (which all visits should be), don’t take it personally. Don’t tell me how devastated you are about my cancer. Don’t ask me about my cancer every time you see me – take my cues and ask me about every day things and tell me about your every day things.
7. Read about brain tumors/cancer. Understand the difference between them. Educate yourself and don’t assume that it’s a death sentence. Don’t tell me about all of those who’ve lost their battles, give me hope with the positive stories. However, when I’m doing well, don’t assume I’m ‘cured’. There is no cure for brain cancer. Even if I have no sign of a tumor at the moment, it will likely come back at some point. Help me fight to make sure it’s a long, long time from now. Don’t tell me it’s all going to be ok, because it is NOT ok. It will never be ok. Don’t pity me or others in similar circumstances. No one did this to us. Understand that I’m fighting, we’re fighting every day of our lives. Know that we’re all hoping that one day there WILL be a cure. Know that we’re all fighting the odds to try to live as long as we possibly can. Pray, send positive energy, and hope along with us.
8. Don’t be afraid that I’ll have a seizure at any moment. I’m taking medicine to control/prevent my seizure disorder. But ask what you should do if I happen to have one.
9. Brain tumor/cancer patients need the support of family and friends. But no one can really know what they’re going through better than another brain tumor/cancer patient. Ask that person you know, or the person you know who knows someone if they’d be willing to talk to that newly diagnosed individual. 99.9% of the time, we’ll say yes. We know what its like. We can offer a willing and patient ear, without judgement. We can explain what they might expect. We can refer them to resources that will help them learn more. We can discuss clinical trials and what to ask the doctors/coordinators. We can share what our own experience has been on trials. But most importantly, we can reassure them that they’re not alone.
Support groups aren’t for everyone. General support groups often don’t provide the support that brain tumor/cancer patients need. Specific brain tumor/cancer support groups will likely be better. Either way, know that some people will find a support group helpful, some will not.
10. Understand how my brain tumor/cancer has changed me, understand that even if my tumor is on hiatus, I still have a brain injury thanks to the neurosurgeon cutting out a piece of my brain. The impacts might be obvious or invisible. For me, I have short-term memory loss, I will stammer, I will forget common words or references – or use the wrong words. Have patience and don’t complete my sentences for me. Don’t make me feel bad if I tell you something for the third time this week. On occasion, I have slight balance issues. I can’t take anti-histamines, so pollen is more evil than usual, requiring me to stay inside some days. Once a month, I will walk around with an ice pack on my leg. I have not lost my mind or received a strange, repetitive injury. I’ve received my vaccine injections and am extremely itchy and ice helps.
11. Donate to the cause to support research. We’ll be walking every year to raise money for National Brain Tumor Society. Help us raise money and awareness. Walk with us to show your support and possibly get a free t-shirt for joining Team Every Day Left.
Brain tumors aren’t as uncommon as you think if you listen to the rumblings.