So....talk about.....CANCER SUPPORT THREAD !!

[3goodeggs]

Your mom was just one year younger than I am. That was much too soon for you to have lost her. Your dad must be missing her terribly also.

 

[chickensnewtome]

He is alot, and sometimes I don't know what to do to console him, so I just listen. Church and the promise of what lies in wait for us after death has helped me, but it does not console him.

 

[chickisoup]

Sometimes bringing up happy times long before the sickness began can help to ease the pain, even for a little while and if you keep doing this over and over (it takes patience) little by little the light to begins to shine through the blackness of the grief allowing the person to breathe again. I've seen this work. Hang in there. The first holiday season after the loss is always the hardest for everyone. Don't forget about your own grief. Take care of yourself too.
We're all here for you and we care.

 

[chickensnewtome]

Sometimes bringing up happy times long before the sickness began can help to ease the pain, even for a little while and if you keep doing this over and over (it takes patience) little by little the light to begins to shine through the blackness of the grief allowing the person to breathe again. I've seen this work. Hang in there. The first holiday season after the loss is always the hardest for everyone. Don't forget about your own grief. Take care of yourself too.
We're all here for you and we care.

thank you chicki, as the holidays come along, i find myself reminded of her in everything, I miss her SO much and long to talk to her and tell her everything amazing that has been happening but since my dad moved in I am focused on him. I am so used to pushing things into the back of my mind.

 

[jjthink]

To those dealing with grief right now, and/or worry, wishes for peace and comfort. I know it's especially hard at the holidays, though hard all the time really. My dad has been very ill for 2 years, not to our knowledge with cancer, but with various other troubling physical issues and with heart wrenching dementia - every day is a challenge and a worry n- I am with you....., JJ

 

[chickisoup]

May I PLZ share some really amazing news??? Ok, no miraculous healing (not that could not yet happen ) but close!!!

BACKGROUND
Everyone in my position has been holding their breath waiting (as have many of you on here possibly) to discover what obamacare was going to mean for us and those with similar catastrophic illnesses. Did you know that someone with CML (chronic myeloid leukemia)( like myself)and on Medicare, now will have to pay out of pocket $10,000.00 up front ANNUALLY before the drug benefit kicks in??? One reason is because the very same drugs that would cost between $400-$800 per month in Canada and most of Europe costs, no kidding , between $6000-$8000+ a MONTH retail here in the US. Why? One reason is the Obama administration keeps renewing the patents on these drugs. (Other nations are not required to honor these patents but usually do so until the first 7 year patent expires) The other is the government refuses to put a legal cap on the amount a drug company can charge unlike all other civilized countries, even tho this has been proposed to the current administration more than once, as well as previous administrations, to be fair, but prior ones weren't dealing with drugs that now, tho they don't cure, can turn an acute "death sentence" into a chronic disease. Granted, basically taking a chemo drug every day isn't always a picnic, it is still far better than the alternative. Anyway, the key word here is CHRONIC. that means we are no longer, in most cases, dying from our cancers which means each one of us (or our I insurance companies) is paying that $6000 - $8000 every month for the rest of our lives (which for me so far has been 6 years) so you do the math. That's over $600,000.00 they have made, So far, just on me! Since so many are now survivors there are thousands taking these drugs every day! Has your calculator broken yet? Back to the person on Medicare. How many folks do you know on social security can cough up $10,000.00 come January? Sure there are some but many more can't without selling what little they have which causes another problem qualifying for other programs. It's a nightmare.

Anyway, this is what we were potentially facing as we were given notice my husband's pension was dropping our current drug program and changing companies as of January first. This came by mail in October with nothing else except it did contain a list of drugs that would no longer be covered with the notation that there could be others and we would receive more information by the end of the year.
I just FINALLY found out my drug is covered and at the same copay!!!!!e

I still intend to keep up the fight for those not so blessed. Did you know that right now there are over 100 oncologists and growing uniting and putting pressure on the Obama administration for the price cap to help these people? Take a close look at your neighbor in this season of caring. Is there someone near you counting out their last pills and not knowing what comes next? You might be shocked how many are facing this reality in the new year.

 

[3goodeggs]

My husband and I have a 10,000 dollar deductible with our present insurance company. When he tried to find out what the new program would cost, they told him we are eligible for medicare. The problem is none of our doctors take medicare. So we will still be paying 500 a month for insurance we cannot use because we get close, but never breach the 10,000 deductible.
The system is broken and remains broken.
I had higher expectations. Dashed yet again.
I am relieved that you will not be in worse shape. That was not what was supposed to have happened.

 

[chickisoup]

My husband and I have a 10,000 dollar deductible with our present insurance company. When he tried to find out what the new program would cost, they told him we are eligible for medicare. The problem is none of our doctors take medicare. So we will still be paying 500 a month for insurance we cannot use because we get close, but never breach the 10,000 deductible.
The system is broken and remains broken.
I had higher expectations. Dashed yet again.
I am relieved that you will not be in worse shape. That was not what was supposed to have happened. 

It truly is a mess, sigh. By the sound of things it doesn't matter because most hospitals/doctors are going to refuse to accept obamacare.

The worst part is none of us know what is coming next. This whole implementation thing is far from over. We were informed that our medical insurance will not be changing for 2014 ONLY. What most folks don't yet realize is that all the forced big corporate changes kick in on January 1, 2015!

My husband retired from a large company as a factory worker so it is very possible that we are saved for only one more year. My medical bills would be huge out of pocket. In the past year alone I have required more echocardiogram to track the damage my drugs are doing to the heart muscle than most people have had hair cuts! Every 3 months is very expensive blood work to track the drugs, you get the picture. I am not old enough to qualify for Medicare so if we lose our insurance because of obamacare, we're toast.

 

[3goodeggs]

I realize I wrote medicare, but I meant Medicaid. The auto correct does not like the way I spell Medicaid or, perhaps like all of my doctors, it just refuses to accept it.

I can not imagine how letting people die who can be managed with medicine is at all going to keep them in business. If people can not afford it, then who will they care for? Are there that many of the 1% with your type of cancer? seems like bad business, faulty economics... bad math. or something.

I will be thinking of you and squeezing out the positives that something good happens with the insurance mess.

 

[chickisoup]

I realize I wrote medicare, but I meant Medicaid. The auto correct does not like the way I spell Medicaid or, perhaps like all of my doctors, it just refuses to accept it. 

I can not imagine how letting people die  who can be managed with medicine is at all going to keep them in business. If people can not afford it, then who will they care for? Are there that many of the 1% with your type of cancer? seems like bad business, faulty economics... bad math. or something.

I will be thinking of you and squeezing out the positives that something good happens with the insurance mess.

ThAnk you for the good thoughts (prayers also appreciated )

i think it's called government, aka politically, supported greed. The drug companies are a very powerful industry 2 nd only in profit in this country to the oil and gas industry

Actually, think about it. All those 1%ers that ten years ago were dying each year within a short time (often from the treatments trying to keep them alive) are now surviving in most cases, every year and living at least for many years so the numbers increase every year. (That 1% usually refers to the number dxd every year. Tho the cancer is still rare those of us living with it increases every year)
My own story- when diagnosed I was near death but the first drug to successfully control CML had not long before been developed and only recently approved (fast tracked) for a first line treatment. This was Gleevec. I never reached remission on it after 2 years and eventually it failed completely but kept me here long enough for a 2nd generation drug which showed so much promise it too was fast tracked. This is Sprycel. (There are two more now that work in a similar way and a completely new drug that may be fast tracked and available very soon). Anyway, if you are curious to know more Google Sprycel for the story either NBC or CBS did last week about a woman caught in the horrible payment trap and facing a bleak future. They talk about how many may be in the same boat and how oncologists across the country are trying to force change.