Topic: Our cancer journey blog

here is "our story" if anyone is interested. smile

http://thisiswhativegotfortoday.blogspo … ancer.html

2 (edited by Lainy Tue, 09 Apr 2013 22:12:08)

Re: Our cancer journey blog

Dorien, Your Blog is very well done, I like the way you write! I answered your Introduction first on that post....I think Kyle may like this one, my husband Teddy used to say, "Now we know what is wrong, let's fix it!"

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Our cancer journey blog

Dorien....welcome to our site and thank you for sharing this wonderful blog with us.  Dorien, I read through some of your blog and am wondering whether you have applied for Disability?  As far as I know, you can apply online on the Social Security website (Diane had mentioned this.)
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Our cancer journey blog

Marion

we have applied for SS Dis. and were denied (as my husband is still working)--

we've heard it is really hard to get on ...if anyone has any advice on that--we would love it for when the point comes that Kyle is not working!

Re: Our cancer journey blog

Dorien....correct,  your husband will not qualify as long as he is working however; I would look into it a bit more.  If indeed he retires, due to the terminal prognosis, he should qualify and possibly receive back pay to day of diagnoses.  Additionally, the children may receive benefits also including back pay.
Hoping for others to chime in and help you out with their experiences.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Our cancer journey blog

Dorien,
Your story is fascinating to me, your feelings sound oh so familiar.  It's exactly what I was feeling a year ago when my husband was diagnosed.  I'm not nearly as articulate as you are though.  Regarding SS disability, you should reapply.  We were approved right away and I think it's that diagnosis that does it.  Also, the question regarding if your illness is expected to result in death moves you to the head of the line, so to speak.  Unfortunately, it does take 6 months for the benefits to start, but it's best to get the ball rolling.
My husband found out on April 5th last year and that was the last day he worked.  He was exhausted all the time and his job was very intense and he simply couldn't do it anymore.  I'm glad your husband feels well enough to continue to work though, I'm sure it's good for him psychologically as well as financially for your family.  God bless you! This is a hard time for you,  I know.
                Dianne

7 (edited by Pamela Wed, 10 Apr 2013 18:40:35)

Re: Our cancer journey blog

Hi Dorien,

I really love your blog. Your feelings are my feelings and I really get you. The only difference is the person with cancer is my daughter. I hope Kyle continues the good fight and does well. We have a very supportive family as well and that makes all the difference. Once the newness of all this sinks in, it becomes a little easier to deal with. I also got some happy pills (antidepressants) from my doctor that work wonders to keep me from going off the deep end. Take care and God bless you and your family.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Our cancer journey blog

thanks Pam (and everyone)-

my husband (ironically) is a clinic admin for a Dr Office (family practice)--
the Drs have mentioned i may at some point need some kind
of meds to help deal with this--

I am not against keeping myself off of the deep end (esp with 4 children) smile

Re: Our cancer journey blog

Hi Dorien, my wife Cindy was diagnosed 4/2011 with intrahepatic CC and was treated at Indiana University Simon Cancer Center in Indianapolis. August 2011 her Dr. recommended her speaking with a social worker about SS disability. CC is "on the list" of cancers qualifying a person for SS. Her process started in August and in November she recieved a check for 8 months of SS, back to the month of diagnoses. I do know you can have limited income while receiving SS disability, but am not sure of the amount. I would never make a recommendation about a person leaving their job to draw disability, although if his job allowed maybe he could work part time and be under the maximum allowed earnings. I know in our case, it was getting diificult, mentally and physically, for Cindy to continue to work while having chemo. It allowed her and I to spend more time together and with our kids and grandkids. Sadly Cindy lost the battle with CC in February of this year, three weeks short of her 57th birthday. God bless you and Kyle.

Re: Our cancer journey blog

Dear LannyA, first I would like to express my heartfelt condolences for your wife, Cindy and then to thank you for telling us about Social Security Disability as that is always one of our big questions. This is a hard time for you but when you are ready you will find your "new normal". Happy Memories will replace the grief when the time is right, they really do.

If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Our cancer journey blog

Lanny...Your kindness to help others in a time of sorrow says so much about you and who you are.  Thank you, Lanny, for supporting those in need of answers and for opening your heart to us. My love to you and your family. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Our cancer journey blog

Thanks Lainy and Marion, That is the reason I aquired my own log in. I have read a few post latley that I thought I could help with an answer or suggestion and did not want to post under Cindy's log in. As a constant caregiver for two years I have learned a few things and if I can help someone dealing with what I call the "indiscriminate demon" known as CC, I want to, and Cindy would want me to.

Lanny Andrews

Re: Our cancer journey blog

Lanny, I hope one day that none of us have to be on this sight, although I would really miss all my CC Family, for sure. My husband got the "demon" at age 73 and this Board got me through the next 5 1/2 years. I found I could not give it up after he passed and it is my way of paying it forward, besides I became addicted to this site.  I also found that it is very cathartic to write. We are happy to have you and I am sure you can lend some advise even a chuckle or 2. Our members are the most caring and loving people the owrld over, and I might add very smart!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Our cancer journey blog

Hi Lanny,

It is a pleasant surprise to see you on this site. I think it will help others for you to offer advice wit your words of wisdom about CC. I also think it will help you as well. Cindy always had a kind word and I'm sure you will carry on and do the same. I think she would be so proud of you and your willingness to help others.

Bless you, Lanny,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Our cancer journey blog

Hi Lanny

thanks for your insight and advice...so sorry to hear about your wife.

seriously.

we will keep researching SS so when the time comes kyle can get the ball rolling.

he still feels really good--strange but true.

he is the kind of person that has a hard time sitting around and
AT THIS POINT, mentally, working for him is SO healthy.

I know there will be a time when that is not possible.

so we will keep planning and taking advice for when we come to that
point.

thanks again!
dorien

Re: Our cancer journey blog

Hi Lanny,

I am fairly new to this site and didn't know your wife, Cindy.  However, when I read your above post I couldn't help but post a response to say how moving it is that you can reach out to help others while you are going through your grief.  Thank you for your kindness.

Mary