So, some of this is from me personally, but most of this is stuff I hear repeatedly from many, many friends in my online support groups or people that I know IRL who are coping with multiple myeloma or metastatic or incurable or terminal cancer.
I think people WANT to try and say and do the right thing, so this is not a criticism, but an effort to give some perspective about how the world looks from our vantage point. We didn’t have a clue either till we were put in this pickle, why would you ? Most of what I am able to say here NO CANCER PATIENT will tell you because they don’t want you to feel upset or criticized. But I know there are people who really care and would feel more enlightened and informed than angry, and they want to know, so here it is!!
1. You need to make time for yourself.
Cancer is a full time job. So not only do we have to keep up with everything we had before, we also have to spend a huge amount of time coping with doctors appointments, insurance companies, medical treatments, side effects and the work it takes to apply for financial aid and personal loans and other help for funding your care.
We would LOVE time for ourselves that doesn’t involve medical treatment. We get that self-care is important, but it’s also a very small part of the picture. Don’t recommend this unless you are willing to step in and make this possible, please see below.
2. You need to put your health first, your children, family, job, home, pets can wait.
Well, if we miss a registration date for our child’s activity or paying a bill or a work deadline or slack off on a child or pet’s health care, that doesn’t relieve stress. It ultimately compounds stress which is far more detrimental to our health. Sure, most of us reduce and minimize our luxuries, but there are still necessities. If a child doesn’t get registered for that dance class, that makes it impossible for a parent to schedule a dr appt that could go long or get that extra rest in because of a problematic treatment side effect. If we miss a work deadline we are in jeopardy of losing jobs that ensure our insurance. Sadly, the world doesn’t stop when you have cancer, in fact, we learn quickly how unforgiving it is when we can’t keep up the speed of our previous lives. So,ensuring our lives are running smoothly is a very important part of putting our health first.
3. Your life can’t be about cancer.
That’s true and we don’t want it to be. We would love time and financial resources to hang out with friends, go on vacations, cultivate hobbies. But most of us are stretched very thin, and stating the obvious is not only not helpful, but a little insensitive. If you want to help us have a life beyond cancer, then help us! Don’t disappear because we no longer have the physical ability, or have the time to initiate or budget to do things we used to. Don’t point out yet another thing on our task list we have difficulty doing or are failing at, because of where we are with our disease and the multitude of other demands made on us.
4. Don’t be afraid to ask for help!
We gently let our friends and family know how overwhelming it can be to manage your life with everyone’s schedules being strained by cancer care and ill health. But at some point, people just need to step up. Don’t give us another job or ask us to demand that from you! If you want to help, you will.
5. Everybody is busy.
Sure they are, but let’s not pretend it’s the same thing as tossing in a chronic or terminal illness that means you aren’t at 100% and can’t determine when and how you will be dealing with a medical issue that not online sidelines you, but adds to your ever extending list of things to do when you do have time and you’re well. Also, if we have a doctor’s appt, we can’t just reschedule! We know most things seem like life and death to people, but we really ARE dealing with life and death. Don’t add guilt and criticism to our lives as we struggle to manage everything.
6. You will beat this and get back to normal in no time.
No, no we won’t. These treatments don’t cure our cancer, they extend our lives and are tough on our bodies and our family dynamics and finances. We will have a “new normal” eventually, but it won’t be anything like yours.
7. You are handling this all wrong! You are selfish, annoying or you have changed.
Believe it or not. Many cancer patients who suddenly find themselves in a vulnerable situation are attacked or abandoned by spouses, family, co-workers and friends. This is a situation that tests the character of people and relationships. Suddenly the cancer patient can’t be the source of help and support, but needs it from others. Many people have natural limitations (they’re just acquaintances or co-workers) on their relationships and some are just in dysfunctional relationships with selfish people. Either way, if you can’t be there for someone, there is no need to project your insecurity on the cancer patient. The cancer patient’s circumstance has forced someone else to look in the mirror and rather than examine that complicated and difficult human situation, they would prefer to blame you. It’s easy, but incredibly patronizing to tell someone how to “cancer behave” or judge them.
We are figuring this out on a minute by minute basis. We are human. Sometimes we will feel positive and hopeful, sometimes we will feel overwhelmed or discouraged. We are doing our best. Even if you have the world’s best attitude, you won’t do as well as those who have great social and emotional support from the people around them. The cancer patients who are forced to shoulder all the burdens on their own and walk on eggshells to make sure friends, family and co-workers are able to handle everything are the ones who do worst.