Random thoughts

Random thoughts on finding out – 6

Continuing story in the hope some small part may be useful to others.

62 yr m. MM4yrs. BMT. Darzalex/Pomalidamide/Steroids protocol maintenance.

Not chronological. Not sequential. Sometimes informational. Not always personal. Always truthful.

Okay. Finally. You’ve found out you have MM. Perhaps you thought this would be a relief. This is no relief. You might be angry. Fragile. Breakable. Pain all over. Unlike anything you’ve known. Suddenly scary tales bubble up about Cancer. Horror stories. You’re Scared. Pissed. Teary eyed. Flailing away for a handle. Or any combination of these. What you need is hope.

Doctors are hopeful. They’ve seen enough to understand and what happens. You’re condition is normal’ to them in the sense this is what they do. Like plumbers. They’ve experienced this. You haven’t. It’s brand spanking new. And since it’s CANCER loaded with more baggage than you think you can bear. Don’t get ahead of yourself. Stay present. It will be hard. You may wonder where all the tears come from. If you’ll ever be able to walk up stairs instead of crawling up them again.

Friends and family are sure you’re going to be okay. And of course everyone is sorry for you. Truth is Cancer SUCKS. Nothing can change that. And it sucks in ways you have yet to find out. Cancer is tricky that way. Just when you think it’s stable Voila! It mutates.

What you really need now is HOPE. Not platitudes. Not ignorant words. You’re the one with MM and finding hope in this condition is a place you never thought you’d be. There is hope. Little bits of hope are flying around everywhere, yet to be found by you, one more MM case. But your MM case.

MM is treatable. You’ll find that out over time. Until you’ve gathered all those pieces of hope up, now is your starting gate. You could almost say this is the time of your life. Because it is your life.

Depending on the stage of Cancer you’re in, treatment may start immediately or there may be some time. No matter what, you have much to do and you’re going to need all of yourself to do it. Don’t pretend about yourself. Honesty, though it can be scary, esp since the issues MM reveals often are new as well as deep, can actually be a source of strength.

Cry when you need to. Sleep if you want. And ask for help if you need it. Caregivers want to be involved. Think of things for folks to do. This involves them and helps them feel a part of your struggle. If it doesn’t feel like a struggle now, chances are it won’t be long till it does. This is no time to downplay. And you’re going to want and need help. Tasks as simple as walking to the car may mean you stumble more than walk. You’ll need a hand. When you can’t make the BR, having help cleaning up can turn an embarrassing situation into a comedy of errors. Who thought you’d ever wear diapers again?

How others respond to you can be shocking as well as revealing. It’s not up to you to protect them. Not only are there groups for patients, there are groups for caregivers. Many think being a caregiver is harder than being a patient. Every situation is different but you are not responsible for their feelings. Avail yourself of the resources available.

“I Was Devastated”: Tim Berners-Lee, the Man Who Created the World Wide Web, Has Some Regrets


I find it heartening that t the Inventory of the Internet, values the Democratic impulse more than the invention itself.

T here was a time I loved the web for it’s democratizing value. The world’s biggest library open 24/7. It’s obvious that has changed. Not to mention we paid tax dollars for it and corps have now taken it over and we are charged again. Oh the joys of rampant capitalism and govt run by money grubbers!