December 17, 2008 at 2:21 pm #24953devoncatParticipant
I am sending you and Charlie good thoughts. Please let us know how that pneumonia is. I hope you are feeling better also. I am so angry about the situation. Rare cancer patients get shafted all the time. It is the terrible circle of not having enough patients for studies, not having funding, not having dedicated institutions that mean little research is done so then insurance companies can turn around and deny, deny deny. I am so hot right now, I think I need to right a letter to my congressmen about better protection for people with rare illness. We should start a letter campaign in the same way we did the Oprah letters about how insurance companies use the fact that it is a rare disease to deny treatment.
I will step off the soap box and now send you my best wishes.
KRisDecember 16, 2008 at 1:42 am #24952walkMember
Sorry to hear what you’re dealing with. I wish I had read this yesterday as I was in W-S all day today because my dad had 3 appointments. I would have brought some lunch, dinner, or moral support to you. I will email you when I find out if I will be back this week and if so, I will try to drop something by.
You and Charlie are in my prayers,
JanDecember 16, 2008 at 12:44 am #24951darlaParticipant
Actually, now it is terribly cold & then we are going to get more snow! Just what we need.
Good luck to both of you tomorrow. I will be hoping for the best. I too had thought I wish I was living in the UK as far as the health insurance situation goes! As Pauline said, it may not be the greatest, but it sure is a lot more fair than here! Take care & let us all know how things go tomorrow.
Love & Hugs,
DarlaDecember 15, 2008 at 10:21 pm #24950
Hi Darla, I’ve been keeping up with you. I hope you’re not too snowed in. Thanks you for your kind words. I agree – they are evil!
Dear Pauline, I know, the American healthcare system is so messed up. Can we come live with you? Just kidding. Charlie’s been on oral Xeloda, but had to come off because of the pneumonia. If he doesn’t fight back from this, he won’t be a candidate for the spheres procedure, but one thing at a time.
Hi Tonia, your words comfort and give me strength. I’m praying for your Grandmother to be as comfortable and peaceful as possible. You’re a blessing to her.
After much chasing around and many phone calls today to Charlie’s oncologist and his regular doctor, we have an appt. in the morning at 8 a.m. Will hopefully be able to sort some of this out. Pneumonia, jaundice, does he need a stent, bad indigestion – I have lots of questions I’ll try to get answered and I’ll update when I can. They might want him to be admitted to the hospital to try to get this pneumonia under control??
Wish I could hug all of you in person! Thank you.
CarolDecember 15, 2008 at 9:34 pm #24949toniakMember
I am so sorry you are having to deal with that on top of everything else.
I know I was going NUTS trying to deal with the insurance company. It is just such a pain.
Stay strong. Know you aren’t alone.
ToniaDecember 15, 2008 at 8:15 pm #24948paulineMember
I am thinking of you too and hope Charlie will pick up and that you manage to get the sir-spheres. This can take a while to sort out, even if there is no funding problem, because they have to get everything exactly right for the procedure, so it may be worth getting Charlie on some other treatment e.g chemo while you’re sorting things out.
I wish you all the best in your fight with the insurance company. We are so lucky in the UK that we don’t have to think about these things – even though we all have criticisms of the NHS, because it could be much better funded- it is still definitely the fairest system in the world!
With very best wishes,
PaulineDecember 15, 2008 at 6:13 pm #24947darlaParticipant
I am so sorry to hear that Charlie has not shown any improvement. I am hoping that will change soon. As for the insurance companies, I think they are all evil!!!!! They take your money & then do everything they can not to pay when you need it. Keep fighting. There is always hope. I am thinking about you & Charlie and also you Sophie and everyone else here and hoping for the best for everyone. You are all in my thoughts & prayers.
DarlaDecember 15, 2008 at 4:48 pm #24946
Dear Sophie, all you’re dealing with and you reach out to me. We can always lean and rely on each other. I hope you get some relief soon and get your questions answered. Thank you Karen, Lainy and Marion! Heartless about sums it up Karen. Yes, there’s still hope Marion. My concern is Charlie’s health deteriorating with the pneumonia. But we won’t give up. Lainy, you give me strength. Thank you all for the prayers!
CarolDecember 15, 2008 at 2:42 am #24945sophieMember
My heart goes out to you, Carol and Charlie. I hope Charlie rallies and BC surprises you with good news.
You’re in my prayers.
SophieDecember 15, 2008 at 2:00 am #24944lainyParticipant
Hi Carol. So sorry to hear about Charlie and also BC. As for us care takers, who has time to be sick! I have been attributing everything to stress but I know better. Then I say when we have everything settled I will go see about my aches and pains. Perhaps we could go back to the old days when people picketed companies like Blue Cross. Just think we could really get noticed if a bunch of us Care Takers hit the streets! I do not think there is anyone as courageous, strong, caring, empathetic, giving, lets throw in smart as a Care Taker. And we have to watch the most important person in our life suffer so inhumanely. With that said, all I can say is stay strong and our thoughts and prayers go out to you.December 15, 2008 at 1:05 am #24943marionsModerator
Carol….They have not rejected you formally, as of yet so, there still is hope. Sending good wishes for Charlie to feeling a bit better by tomorrow and then for him to continue on, upwards. Take care of yourself. When tending to someone else’s need it is easy to overlook one’s one health. Hoping for good news coming your way (and ours.)December 15, 2008 at 12:51 am #24942karenParticipant
My thoughts and prayers are with Charlie and you during this terribly trying time. These insurance companies are so heartless.
KarenDecember 15, 2008 at 12:46 am #1803
Today is a bad day. Tomorrow will surely be better. Charlie has pneumonia. After a trip to the ER and changing antibiotics, he’s feeling a tiny bit better he says. I’m also down with something. I guess I’ll go to the doctor on Mon. and get checked out. I really don’t see BC approving the SIRspheres for Charlie. They’ve had all the information for the 3rd appeal now for a week and not a peep out of them. They want us to just go away. We sent a huge package with tons of data, letters of appeal from me and Charlie and photos of our family and I’ve gotten our Senator’s office involved also. Nothing. If it gets approved, unless Charlie really rallys and gets his strength back from this pneumonia, he may not be a candidate any longer for it. I know at the ER his liver function tests were all over the place. I am physically, mentally and emotionally exhausted and drained from this battle we’ve waged since May 2007 when he was diagnosed. Seeing someone you love go through this is so hard. I know you all know that.
Love and good wishes to all,
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