What concerns are strongest in your mind?

Advocacy_Volunteer
  • By Advocacy_Volunteer · January 14, 2013 at 9:52 am · 49 replies
  • In Living with cancer
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Findings from a new study found that the strongest concerns among those who wake up every day, facing life, knowing there is a diagnosis of cancer that affects how they live, found these five issues at the foremost among their concerns:

1.) fear of recurrence
2.) fatigue
3.) living with uncertainty
4.) managing stress
5.) and sleep disturbance.

Would anyone add anything else to that list?
Or change the order from 1-5?

To read more, this article from the Oncology Nursing Society can be found at www.PinkRibbonSurvivorsNetwork.org. Follow the Survivors home page to the Curriculum for Recovery Library tab to the topic " Doubt and Hope."

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49 replies   

lauriesh

This is a forum for people with stage 4, our concern is no longer recurrence.

My concerns are dying and leaving my 3 kids without a mother.

Laurie

Advocacy_Volunteer

My thoughts are with you, and undoubtedly, heart-breaking from day to day.
I know that a book, titled, "When a Parent has Cancer: A Guide to Caring for Your Children" written by a doctor who developed cancer when she had three young children has been been insightful to many persons living with recurrence and facing the challenges of raising children, at the same time. You might look at that book on Amazon.com and see if it offers any suggestions......

Breezy1

I think that FEAR OF RECURRENCE needs to be removed from the list, as Laurie has said the worst fear has become our reality. I would, however, add depression. If you don't wnat to remove fear of recurrence then you are asking the wrong people for their concerns.

KLeeR

All of these are on my list, except fatigue is number 5 for the moment because I am NED since my surgery, chemo and radiation, though my tumor markers are, slowly so far, moving up. There are some that I've read who are in remission, though in stage !V. My guess is recurrence and expansion of metastasis would be number 1 on their list. hoping to stay alive as long as possible to be with their children and families. Come to think of it, rising tumor markers could be added to the list. This is a worry, but there is sometimes no evidence of metastasis yet, so the patient is in a worrisome wait and see limbo. Another thing commonly mentioned is "scanxiety". Most on here have that as a major issue. It increases the stress terribly waiting to know what the results have been and many doctors take a great deal of time to get back to the patients with this info. Of course, pain is another one. Those with metastasis have a major problem, but even if one is NED, you get issues with neuropathy, swelling, drug reactions, etc. Financial insecurity is also huge. Many have poor insurance coverage and the expense is horrible. There are many denied certain treatments and drugs. My hubby and i went in to get a drug for neuropathy yesterday and the price was $210 dollars, so we had to leave without it. I also wasn't able to ever afford the anti-nausea drugs when I had chemo. The cost was $240 for that prescription. Our insurance only covers generics for the most part. A person is caught in an in-between land wanting to have some money left for the future and their families, even if the worst happens to them, so all medical purchases have that factor in them. Keeping a job is a problem for many. The treatments and side effects make this insecurity huge. Chemo brain is a major factor in whether to work or not. So, here are my additions:

Rising tumor markers
Pain
Scanxiety
Access to and affordability of medications and treatment
Financial Security
Job security

Robin912

For me at this point ( 7 months in) I would have to put FEAR OF UNCERTAINTY in the # 1 spot.

frenchy50

I agree with Robin. FEAR OF UNCERTAINTY....kind of says it all....like a brand new emotion you never knew existed and yet it's all over you...what's a girl to do? (besides stuffing it in a drawer for later ;))

Also, miss advocacy volunteer....we welcome open honest communication here....probably more honest than anywhere and there is certain amount of trust involved with it....we're also very protective of one another....like a momma bear...so welcome whomever you are - please fill out your profile so we know who and why we're sharing intimate thoughts and musings...thanks....

TPALOMARES

I concur Frenchy, and glad to see your up and about and posting :) (This makes me smile)

Kleer-Have you checked into Walgreens "Needy Med's program, although it cost 20.00 for registration, I had over $700.00 worth of scripts (No Insurance) and they were all available in generic under their program for $52.00!!!! Check it out and you can even do refill ordering online and send a request for them to contact your Doctor for a script! It's awesome!

Advocacy person-who are you and why are you asking these questions? We are not "Pink Ribbon Survivors" so what is your jive???

langley10101

I would add, being 'written off' as not worth treating.

langley10101

and....imagining my children without a Mom.

ibcmets

I definitely would add financial insecurity as we know at stage IV, our treatment never ends.
Terri

Shoofoolatte

Sadness. (is this depression?). The other day I looked at my husband and saw him as an old man. He's only 62 and does not look old now, but I could see how he would look when he was 85 and alone. I didn't want to see him go through old age alone, and I found myself hoping that he would find someone who could accompany him. That made me very sad, because I wanted to be there with him in old age, and I realized that it might not happen like that.

I want my husband and my son to know that whatever happens, I will ALWAYS wrap them in my love. Forever.

LauraW43

I think advanced breast cancer covers stage III also, so fear of recurrence would count for some, although not most of us here. I wonder- since I am NED, I have that same fear of recurrence, even if it might be called something else, at this point. I am really afraid of becoming un-NED (and wondering, because I have a few really sore places in my ribs). I am afraid of my husband struggling without me, of missing my kids' weddings/babies/lives, of having to quit my job before I pay my debts off, of dying without doing at least a good portion of the things I would consider bucket list worthy (check off horseback riding - yay!)

Crazy as it sounds, I am afraid of making too much money, because I am on govt. insurance, and I don't know how much I can make, before they take it away - but you know I'm not going to jump from $30,000ish per year to a few hundred grand, so if they take the insurance away, because I've made $10,000 too much, you know that's not going to pay for health care, at which point, i will have to quit my job for sure and get really poor again, or start dying.

I'm afraid of the pain and suffering associated with getting worse (and worse). Am a Christian, so know Jesus has been there/done that which helps just the teensiest (and I mean teensiest) bit :)

I worry about becoming addicted to drugs (on several), becoming unable to function (you should see me walk), having my kids watch me deteriorate - oh, I guess I could go on and on......

LW

cici27
  • By cici27
  • Reply 3705842 · In reply to 3704179 by lauriesh
  • January 14, 2013 at 7:22 pm
  • Report post

I agree that dying b4 my daughter is grown is my biggest fear but recurrence is a valid concern. I have been stage 4 since diagnosis in 2008 and am on my second time NED. Although I am extremely thankful and blessed to have had more time NED than w/mets..."when is the next one going to pop up?" stays on my mind.

Cathyy424

Having no control over our bodies we have this cancer in our bodies and yes we pray that treatment will work but then if treatment stops working another change.Our life will never be the same we fear dying leaving our families ,we fight for our loved ones. This disease can be very lonely.So I am feel so blessed to have this website.I have a very positive attitude but I also have my bad days too I also agree Fear but also Lonliness!!!
Frenchy where have you been I missed you!!!!!

KLeeR

Thanks TPALOMARES for the reccommendation for Walgreen's. We will definitely give it a try. I had forgotten about that. This is the first new prescription since the nausea drug that hasn't been generic, so I will try it this time. -KLeeR

Bestbird

Dying a slow and agonizing death

timarief

LW, just as an FYI... if you are on SSDI you can only make $1,000 additional per month.

Trying to live positively with a death sentence hanging over my head is my biggest concern. I can't live without hope... but also feel a need to do everything possible NOW... while I still can.
My next biggest concerns are never meeting my future grandchildren and leaving my wonderful husband alone.

cynthia54
  • By cynthia54
  • Reply 3706595 · In reply to 3704757 by KLeeR
  • January 15, 2013 at 12:27 am
  • Report post

Wow! Your list was very honest and on point with how I'm feeling!

cynthia54

I think my head only works 50% of the time I think. I was responding to KLeeR's list of worries we have. After reading everyone else's I agree with everyone. What the hell. It was good to read what has been on my mind and unable to articulate it all. I tend to push a lot of thoughts under the rug and seeing the list has helped me realize how much I have on my plate. Know wonder why I have days I don't want to get off the couch! Seeing all of our concerns in writing also made me appreciate even more how well we are all taking our diagnosis. We all have had some awful times from this disease and yet we all keep going. I AM PROUD OF ALL OF US.
WE ARE WARRIORS

MsCatLady

I concur living with uncertainty is at the top of the list

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