Do any of you have experience in the cancer forums? Are there any that you recommend?
A good friend of mine is in the initial stages of a cancer diagnosis. She has very little experience with having medical problems since she is in her early 40’s. But, her dad and I are insulin-dependent diabetics, so she has a lot of experience with OTHER people’s medical problems. I think that diagnosis is pretty traumatic and she’s basically in crisis trying to process the unknown.
I feel like the internet is NOT a safe place for people in crisis. In general, its a place where vulnerable people can be easily exploited. I’ve been looking at the apps and forums related to cancer and some of them don’t get any responses to their posts (except from an AI chat bot or a moderator). There appear to be some good in person groups, locally. But, I fear that it might be super triggering to travel and meet people in person, just yet. I don’t think that facebook sites are as good as our forum because fb isn’t built for in depth conversation.
She’s going to need to learn a lot, fast. What are your thoughts about the cancer forums? Another good friend of mine has had great luck in the online communities for visual impairment. He has made relationships there and could tell you all about which ones are fun and which ones aren’t.
There are so many forms of cancer, so there is quite a variety.
I found a local group that I still meet up with, at a annual luncheon provided by cancer organization.
I was dx 10 years ago, and no re-occurance, and with covid, some gatherings were canceled.
Here is one link that lists Cancer support groups/orgs. May be a good start.
What type of Cancer? I do not need to know. But if you look in the 18+ forums on this site and if her type is covered, I promise she will be well cared for.
Not all cancers are covered, but 3-4 types form communities.
Thanks, guys. I can’t overwhelm her with information. She’s just gotta get through the week, but maybe if I have a list of resources (which I have started accumulating), I can send assistance little by little, here and there.
There’s so much procedural knowledge about HOW to keep track of medical records and billing. She could accidentally cap out the policy…depending on what this is. My worst fear is that they loose their home, but I can’t bring that up.
The Oncology unit she is being seen at will have a lot of resources for patients. That will be a good start. They may even have someone who can help with navigating her insurance benefits. Some offer a mental health counselor that can meet with her, and give her tools to cope. A support group where she can meet other people that have cancer can give her support, compassion, and understanding; don’t discount it without at least attending one session.
There used to be a wonderful list-serve called acor.org, but they closed. However, some of their lists are still active. I could try to find one if I knew the type of cancer, Mohe. I used them for Cancer of Unknown Primary (CUP) and Bladder cancer, and I found that the people posting there were extremely knowledgeable. Haven’t needed to use them for a while, but I still belong to those two groups and through them I may be able to find the appropriate list serve. If you find out what type of cancer, let me know and I’ll see what I can find in terms of the old acor.org lists.
And please let your friend know that, scary as the word cancer is, keep her hopes up. There is more often than not life after cancer these days. The CUP that I had lists a lower than 20% survival rate after 5 years, and I’m going on 22 years now, and 18 years after bladder cancer (although that might be back…surgery next week to find out if it’s nothing, or a recurrence. Probably nothing.)
Thanks, everybody. Its cervical cancer. I’ll need to refer back to this info occasionally. So much with insurance has changed. It’s good to know that some concerns are unfounded. No new information yet. Some minor floundering w/ insurance trying to find an in-network Doc. There’s gonna be some boo-boos like this because everybody’s under stress.
