*what not to say to people with myeloma and other incurable cancer*

Most cancer patients believe people WANT to try and say and do the right thing, so this is not a criticism, but an effort to give some perspective to those who love us about how the world looks from our vantage point. This is culled from many support groups and real life conversations. 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.

1. You need to make time for yourself.

Cancer is a full time job we are adding to our already full lives. We would LOVE time for ourselves that doesn’t involve medical treatment. We get that self-care is important, but 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.
Most people’s lives complicated and so are ours. We already pare down on things in our lives that aren’t necessities, but not having a child in an afterschool program, or missing a work deadline or not paying a bill can kick off a horrifying domino effect that compounds our stress. 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 do what we used to. 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.

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 dealing with cancer adds to your ever extending list of things to do and you are not always well enough to do them. 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.

Try not to tell people how to “cancer behave”. Maybe it makes you feel uncomfortable and you don’t know how to cope, but that’s not the cancer patient’s fault. Maybe you just don’t have that close of a relationship and you want to disappear. Don’t blame that on the person suffering. If you do care, listen. You will find everyone is doing their best, with a little help from their friends!

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