fairydrop
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They think the same mix of gemzar and cisplatin or maybe 5fu and zelodia. The two drs. are going to figure out what they feel is the best for him at this point.
I’m very nervous about the lymph nodes. It seems once it spreads it goes every where. My mom started with cervical cancer that spread to her kidneys,spine and finally the brain. I just have to keep thinking it’s going to be ok.
I hope you’re feeling better soon. May God bless you.
Charlene
Thank you. Today John had to have more blood tests and Wed he has another CT scan.
The Dr. just told me TODAY after getting our hopes up about the treatment that unless his liver enzymes are in order they can’t do it because it might kill his liver. I haven’t been able to tell John yet. I’m going to make the Dr. do it.
Not only that the Dr.wanted to put John on a pain patch and my insurance denied it, said they should start with Valium first!!!
When i called them to explain valium wasn’t for pain and that he NEEDS the patch i was told it wasn’t his decision or his problem.
I’m in Hell, my husband is losing ground fast. He’s got that sick little voice starting and I think he’s getting ascites. His tummy is starting to look like it’s bloating up and he’s continually losing weight.
I’m in HELL!!!Please pray for John, please.
Charlene
Thank you all so much for your words of comfort. I just haven’t been up to writing to anyone.
It has gotten so bad I am seeing a counselor and am attending group therapy for grief management…lol as if you can manage to put your grief in a little box and tuck it away.
I just wanted to tell everyone here to have a peasceful and meaningfull Christmas season.
May we all grow from what we are going through.I love you all for your kindness and caring. You are all like the Good Samaritan who without knowing these people are willing to give of yourselves to try and make things better.
God Bless us all,
CharleneHi,
The hospice John and I had, we had to have our Dr. call and set up the first meeting. The Dr. knew John didn’t have much time and our hospice only took people who had less than 6 months left.
Talk to your Dr. or find a hospice near you and call.
It was the best decision for us. The hospice literally took over John’s care, ordered all his meds, came at least once aweek to take vitals.
They were the most loving, careing nurses and Drs. we ever met.
They not only help the patient , they help the family members deal with their sorrow and fear.
They are truely a Godsend.
Good luck and God Bless,
CharleneRichard,
I truely believe God knows everything. He knows the heart of the person, He made it.
Reading your post made me cry because I am losing my husband to this cancer.
I pray exactly like you, a release from pain and fear, a place in Heaven. I know when John goes his family and mine who have gone before him will be there to meet him.
All we can do is love them while they are with us and do what we know is right.
Your Father sounds like a wonderful man and God knows.
“Be not afraid for when you are absent from the body you are in Heaven with the Father”.Know we are here and care for you. ((((((((Richard)))))) (hugs)
Charlene
Thank you all, My ex, George was taken off life support and has passed away.
We met when we were only 15 and fell in love. We were married at 16 since i had gotten pregnant.
We stayed together 10 years and decided we were better friends than being married.
Since then we spent Thanksgiving together every year. John knew and liked Goerge and
they always talked mechanics.The thing I will miss most is the way he would hug me everytime we saw each other. It was like we had never been apart. We always had a very special bond and I think that was because he was my first love and I was his.
I will miss him terribly but I know he is in Heaven with his family who had all passed before him. I thank God he didn’t suffer, the only thing I regret is not being able to say goodbye to him. He will always have a special place in my heart.
Now I must get back to taking care of my loving husband who needs me more than any one else. We just got the results of his latest CT scan and there is absolutly no change.
We were so hopeful that the chemo would shrink his tumors but it didn’t. He is losing weight and is in much more pain. I fear he will be leaving me soon.Much love to you all for your compassion for a complete stranger. The world is a much better place for you all to be in it. God Bless you all.
CharleneHi everyone,
Thanks for responding. It’s wonderful to get replies to my posts.
John had only a couple of small bouts of hiccups. I tell you we are rejuvenated with hope!!!
We were really devestated by depression for so long just waiting for him to die now we actually have hope for our future. I believe if John can hold on long enough they actually might find a cure for this cancer or at least a drug that will put him in remission.
I’ll write again as soon as we get the rsults of his ct scan.
Gods healing for us all,
CharleneHi,
My husband John is on that chemo mix and he complains of a general burning in his abdomen the second day. It is usually gone by the 3rd day.
Hope your Mom gets some relief from the pain. John also experiences extreme fatigue everyday, it doesn’t go away until he’s ready for his next round. He get’s the chemo every 2 weeks.
Good luck to us all,
CharleneJules,
My heart goes out to you and know that we have you in our thoughts daily. I know exactly what you are going through. Don’t give in. The days are as varied as our feelings. I know I feel a great relief from coming here and venting. I also have no help from family. We are a mixed family and Johns children don’t want to hear anything about his illness. One son hasn’t called in months!
My oldest daughter has time and time again asked if i want her to come help.
You have helped me so much with your postings. You can put my thoughts and feelings into the words I can’t.
I want you to know I am here for you anytime you need help.
CharleneThanks to you all for writing.
This is the only place I have for any kind of understanding of what I’m going through. All who know John and I KNOW he has cancer and KNOW he is dying but they really don’t know anything.
Only someone going through his can really KNOW what’s going on.
Jules, I think your posts are closest to my heart. You have said the words I’m not able to put on paper. I’m in such a bad place. I know we all are being torn to pieces with this terrible cancer. My wish for you is Peace in your heart and relief from the pain, but that only comes with time. That I know from experience . It will come, but it comes slowly.
My wish for us all is a quick release for our loved ones. After watching my Mom die all I can hope for is that John goes quickly. I know the toll that chemo takes, I know the toll on her that the loss of hope took.
She went through the whole 9 yards of treatment. The drs. operated, said they got it all but to be safe she needed rsadiation. She did that. Then it came back. They told her chemo would take care of it. She did that. After all the belief and hope she died in horrible pain.
Last night I was crying in the shower and had a great presence of my Mom. I just told her how much I missed her and asked her to be there when John passes. I know she will be.My love and empathy for you all. You are closer in many ways than my family. I’m so grateful to you all.
Charlene
Well we went to the SSI appt. and since we have a home that’s paid for, we’re not eligable. Wonderful California says we can sell our home and pay our bills.
That’s ok, if it comes down to it we can take a equity line of credit to pay the bills.
We still have about 3,000 left in our savings account and I am getting disability so we’ll be ok.Thanks for all your advice,
CharleneHi,
My name is Charlene and my husband John has cc too.Have you seen more than one Dr.? If all his tumrs are on the left lobe I would think they could do something. Have you researched the internet? That’s how I found out most of what I know about this cancer.
The Drs. gave my husband only 18 months and that was 33 months ago. Don’t listen to time lines they will only make you feel depressed and want to give up.
There are all types of treatments available… photo dynamic therapy, internal radiation, sir spheres, radio frequency ablation, alcohol ablation and many more.
Read some of the other posts on here and you will get a lot of info. The one thing I can tell you is don’t let the Drs. push you around. Make a list of all the possible treatments and ask your Dr. If he won’t explain or just poo poos you, get another Dr.
This is not anything to waste time on. Good luck and God bless you and your family.
Charlene
Thanks so much. We have an appointment this Thursday for SSI disability. When they heard that John is terminal they put us at the top of the list !
CharleneHi again,
When john was first dx’d we were sent to Los Angeles to Dr. Ian Renner for stent placement. After his liver started to drain and he started to lose his jaundice, the Dr. did a regemin of Photo Dynamic therepy and internal radiation.
You can check these out on the internet.He had to return every 3-6 months for stent replacement. Then the Dr. reccomended we get him in hospice. He was there for about 6 months and for no reason I know of he went into remission. That was in March of this year. Oh by the way he had a titanium stent put in due to Dr. trying to cut down on infections which he got EVERYTIME they changed his plastic stents.
After being released from hospice in March he had no treatments at all. He never had chemo because his Dr. said it wouldn’t help at all so why torture him for no reson? The only thing he did do was eat ice cream everyday lol. His Dr. knew he was dying so told him to do and eat whatever he wanted.
John just told me to tell you that he wants you to know his best meds he had was me. Knowing that the love and support I gave him everyday is what keeps him going.
I’m very distrustful of the Drs. now. I think they lied and discharged him from hospice because it was taking him to long to die!!
He’s always had discomfort due to the stent but then the pain was increasing daily and when he got sick in sept. that’s when they discoverd the 6 tumors.
Now he’s seeing an oncologist who swears that this chemo will NOT kill the cancer but will give him time, maybe years.
I hope this helps you. If you need to know anything else just ask. I’ll try to help. I’m staying home with John now and check this forum almost everyday.
Good luck,
Charlene
