1. Get second opinions.
2. Find out more about your cancer before you blindly follow doctors.
3. Remember that people say weird things to you and you need to be strong and ignore them.
what are the TOP 3 things you wish you would have known about this whole "cancer thing" before you started?
1. HBOC syndrome (fortunately I had tested negative for mutations, but I would have made a different surgery decision if II had tested positive. I didn't have tests done until after surgery.)
2. More about "collateral damage" from treatment and what to expect.
I can't think of a #3 -- I had started researching before my diagnosis. And being a caregiver had also given me insights.
I agree with what fellow What Next erst have said. I would STRONGLY like to add:
1. Keeping a separate notebook entitled TIMELINE. Next month will be four long years I have been fortunate enough to be battling TNBC Triple Negative Breast Cancer, a TNBC recurrence, a second diagnosis of a primary malignant tumor on my scalp that grew to the size of my palm of my hand, two medi-ports, multiple operations, radiation in[phone number redacted] and 2016. A total of 18 months of chemo.
Palliative care. Rheumatology consults and appointments.
My first and only seizue: a grand male with 4 days of hospitalization. Two MD neuro consults.
After a while I can't remember what year I had what, started this, stopped that...etc.
Make a TIMELINE journal with only objective entries.
Significant labs. Example: platelets 34
Dates of chemo and what drugs were used/dosages.
I eventually created one of these journal books. It came in very handy when being interviewed for my history for the umpteenth time by a new Dr. regarding a consult, or a physician really wanting to do their own in-depth history and not just relying on previous notes.
2. NO ONE EXPLAINED THE IMPORTANCE OF THIS TO ME. I STILL TO THIS DAY DON'T THINK CANCER CENTERS UNDERSTAND THE PSYCHOLOGICAL STRESS THAT THE FINANCIAL BURDEN LIVING WITH CANCER ENTAILS.
Everyone newly diagnosed NEEDS TO FILL OUT THE SSDI PAPERWORK IMMEDIATELY.
I didn't understand the role it plays in long-term illness. I had worked my entire life, rarely took a day out of work and believed I'd be returning to work in just a few months. There is no way I can begin to explain the torment I've gone through with short-term disability, long-term disability or SSDI.
Thank God I was finally declared 100% disabled a year and 9 months from my works private long-term disability company or I would literally be living in my car or a shelter. As for SSDI, I have been refused three times and am currently waiting for my turn in front of the appeals Judge. May 22, 2017.
Trying to meet paperwork deadlines, etc.....getting hoards of info to them when you are so sick, you can just about make it to the bathroom is no laughing matter.
Please forgive my bad attitude right now towards Social Workers. I do not mean to be disrespectful or hurt anyone's feelings. I couldnt get any help from Social Workers at any of my hospitals or cancer centers other than being handed a brochure. Worthless brochures.
The stress of then being cut off was constantly being dangled in front of me. The worst was they actually cut my payments in less than half for 5 months. Their rational " were keeping the difference as if you were getting paid by SSDI." A maneuver of $13,000 that left me without enough money for food and true necessities. I called my "case worker" at Lincoln Financial (the Long-Term disability insurance company)
HYSTERICAL absolutely HYSTERICAL saying I know they are just trying to break me ad give up. I won't give up. I'm all alone in this world. I'm barely getting by and trying to stay alive. Do you do this to elderly clients as well? What you are doing to me, blocking me from my money is immoral. I don't have a husband or anyone to support me. It's winter and I can't turn on the heat. I'm about to have my electricity cut off!!! What is wrong with you people!!! If I were well enough and had the strength, I'd plead to an Attorney to take my case and fight you. But I don't have the fortitude. (Now I know about the law that the gas and electric company can't turn off a disabledperson's service in the winter.) I was crying so hard.
6 days later, I had a check for almost $5,000 of the $13,000. At least I could catch up on my bills and buy some food.
I sure as heck could use that remaining $8 grand now. So........thank you for baring through this extremely long post.
The sooner you file for SSDI, the better.
As if I'd choose to live on less than half of what I'm used to, have and old car, no vacations, no fun, nothing new. No going out to eat. How can you when all you can do is fight for your life and health. I'm so grateful for what I do have. Truly, I am. If I could spare one person from what bureaucratic red tape I've had to go through, and continue to go through, this long post (of probably aggravating some folks.......sorry).......was worth it.
your story brought tears to my eyes.my oncologists wanted to put me on ssid. I refused like you I thought I would go back to work shortly. I did 9 months later. I have had all sorts of problems /side effects. from the medication. I now have osteoarthritis from my shoulders to my ankles. I go to the pain clinic for treatment. I now wish I had taken his advise 4 years later.
I agree with what has been said.
I WISH I HAD KNOW THAT I WOULD HAVE THIS SEVERE OSTEOARTHRITIS WHICH THERE IS NO CURE FOR. I UNDERSTAND IT WILL GET WORSE.
1. Everyone you deal with will expect you to be scared out of your mind. Remember that fear is a state of heightened awareness. Embrace the awareness.
2. Don't be afraid to say no. You don't have to agree to anything and you can change your mind. It helps immensely if you know your own limits and are willing to advocate for yourself.
3. The way other people react to your diagnosis is more about them then about you.
If cancer is a total surprise, it's hard to be prepared for it financially and psychologically. It takes your daily normal life and messes with it in so many ways. I personally also keep a written log. I wished we could do genetic testing for cancer and catch it early without being labeled as having a pre-existing condition. That label can affect insurance and other aspects of our lives. I understand everyone has some cancer. Why does it mutate in some people, but not others? I found that meditation and exercise help me focus on the present moment.
Mine is a very simple one reason and after that everyone else's responses then fall in place ....DO NOT delay or AVOID getting that first colonoscopy. As I have discovered we men are the worst when it comes to getting them for some unknown or perhaps macho reason. And, then when there is an issue and we get that colonoscopy, well, you know the rest my friends....as I unfortunately did. Keep the faith
To expand a bit on Jalemans comment - I think I would've delayed treatment and gotten a few things done first. We had just moved, my husband had just started working from our home and I had just retired. It all happened in about 4 months. I needed a few more months just to get my "house" in order so that when I was incapacited, permanently in some areas, I would've at least had things together with a clear path as to how to continue.
Great question and answers in this thread.
#1: (same as @katiefnp) Keep a detailed journal of everything. I wish I'd thought of this and done it. I have a timeline and lots of info, but a dated, detailed journal would be better and I'd feel better about having everything written down rather than relying on my memory.
#2: That my health insurance is actually really, really good and the cost is small compared to the benefits. I used to complain about the premiums and the deductibles, but when I got sick I found out quickly that I am fortunate to have the coverage I do. Also, my company and my coworkers were extremely supportive and I appreciate them more now than I did before. I should have appreciated them anyway because they're awesome.
#3: I wish I'd asked more questions. I was told I was going to have a port inserted in my chest for my chemo, but after it got infected and had to be removed my oncologist said that she doesn't normally use a port for NHL patients on R-CHOP. I could have saved myself a lot of days in the hospital, at home IV antibiotics, and surgery if I'd asked if the port was absolutely necessary.
wow great answers a many of days I wish I had gone on disability. I am currently on a pain regimen with a pain clinic. I was terrified when my doctor suggested it. my pain gets a little better. but does not completely go away. today my pain level is hovering between 7 &8 with me taking my meds. I went to the dermatologist yesterday, I now have ointment for the skin break out in the palm of my hand and shampoo and medicine for my scalp.when do the side effects and torture end?