Topic: I need some advice

This is Charlene, Johns wife.
We had our ct scan and they found 6 tumors instead of 3. They're all in the same area with 6 lymph nodes involved.

The oncolpgist wants to start John on Gemzar and Cisplatin on Oct. 9th.
I don't know what type of side effects he's going to have.

My daughter is having a baby on Oct.11th. She lives 2000 miles away. John and I were going to be there but now we can't.

I called her today and told her we couldn't come due to his chemo. She started sobbing and wanted to know if I could at least come. She's married but she wants me there for the birth and I'm totally torn between John and her.

John said I could go but he started crying when he said it.
What should i do? I'm just so overwhelmed with everything I don't trust myself to make the right decision.

please just some advice would help me make the right decision.

Thanks,
Charlene

Re: I need some advice

Dear Charlene,
   I feel so badly for you to have to make such a difficult decision. Your daughter obviously feels the need to have you experience the joy of your grandchild's birth but I personally would not be able to leave my husband alone. I know how much my husband needed me to be there for him (and still does) when he was so sick . I wouldn't have trusted anyone else to look after him and he really wouldn't have wanted anyone else, even though he may have said it was okay. You have to make the decision but since you did ask I guess I would say your husband needs you the most. Hopefully you can both see your grandchild together soon. It may give him a reason to fight even harder. I know my husband's greatest regret originally was that he wouldn't see his grandkids grow up but now he's determined that he will! Take care. Mary

Re: I need some advice

My mom just wrapped up an almost 8 week cycle of Gemzar and Cisplatin. She did two weeks on just Gemzar, once a week and the third week she had two days of Gemzar and Cisplatin. Had the 4th week off. I have to say cisplatin is extremely harsh. She actually decided to get off of it two weeks early due to its side effects. Cisplatin causes extreme nausea but she actually never threw up from it. I can't say I'd recommend this regimen to everyone...but she had her tumor marker checked on Monday and it drastically changed--it's back to normal for the first time. She also has lymph node involvement and will be getting a CT scan next week. The first week of that combo created extreme constipation from the anti-nausea drugs given in her IV. Just be prepared for that. But in hindisight, these new test results have given us some hope. I'm not completely relying on the tumor marker results but it gave me my first real sense of joy in a while. It's almost made the past two months worth it.

Is your daughter supposed to be induced on the 11th or is that her due date? My gut feeling (and it's just the one I have at the moment) is that maybe you should be there if she is definitely supposed to have her baby while you are there. I think that the major effects of chemo won't hit him until several weeks into October. If you can trust someone to help your husband, I think he will be okay. He will definitely need you further down the road and you may not be as ready to leave him at that point. If you decide to go, reassure him that you will be there for those moments when he's not feeling well.  The trip might provide you with an extra boost of happiness that you deserve! At the same time, I do agree with the sentiment that your husband may need you more. I just worry that you won't be as able to leave a month into this treatment.

I'm hoping for all the best for your family. I read a NY Times article that said that cisplatin has literally melted tumors.  If nothing else, let that be an encouragement during these hard times.

Abigail

Re: I need some advice

I sugggest you have a real heart to heart with both your husband and your child. I am concerned how each  might interpret the "choosing". The other thing you might need to think about is emotional strength and how your husband handles things. I hate to admit it but I take things not as well as I should. I think I might feel depressed if I was your husband and you went to visit your daughter for the birth. The thing with cancer is that when things are ok it is ok, but sometimes something happens and you are reminded that you are not ok and you might die. That is when I get very dark thoughts and a slight depression can start. If I was your husband, being left because I could not go--not the chemo itself--would hurt.  But please understand that I am not the emotionally strongest person, other people would react far better than I so that is why I suggest a good talk with each and find out who is the emotionally strongest and the most in need. I am sure you will make the right choice at the time.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

5 (edited by ukmember Thu, 27 Sep 2007 03:01:44)

Re: I need some advice

I feel very strongly that you have to stay with your husband. Your daughter has her own husband and a joyous occasion to celebrate, she will hvae so many things to do, people to see, etc. Does she understand how ill your husband really is? (is your husband her father?)

I would never have dreamed of leaving my husband when he was ill. When he became ill before diagnosis, - he couldn't eat and felt sick - I was extremely busy at work and I really didn't give him enough attention. When I began to realise that this was serious and became worried, my husband told me (sobbing) that he had never 'felt so lonely in his life' as he had felt during that week.  Serious illness isolates the sufferers and they need somone to be there for them.

Your husband has a very serious illness and he knows the outlook is poor. I am sure he feels afraid depressed and isolated - even from those he loves. You are his pillar of strength, his support and consolation, - bluntly he needs you more than your daughter.

Also, his state of mind is an important factor in his ability to deal with his illness. If he is left alone he may easily become depressed and angry. I think unequivocally you should stay.

On a practical point, why not set up up video cam and link with each other through your computers. One of my neighbours talks to his son in Canada (from the UK)weekly over the internet. With video cams he is able to see his new grandchild growing and the contact feels more 'real'.

Re: I need some advice

Hi Charlene,

I too think that right now your Husband John needs you more. It is true that this is a big event in your Daughters life, however she has the support of her husband and whatever other family and friends they have where they live.
John only has you as his wife and you are such a great support for him. It is also possible that John may feel well enough to make the trip after his treatment, and you would have to play it by ear. I am sure he would like to be there as well, and it would be uplifting for him to be with your daughter and new grandbaby. However, if he is not well enough, I think leaving him alone would be very depressing for him.

I take things one day at a time with my Dad, however, my life has been put on hold. Nothing is as important as him right now. If my children do not understand that, then so be it. They will eventually get over it and understand how important thier Grandfather is to me. There is no way of telling how much time we have with him, so I am here with him every minute I possibly can be. There will be other birthdays, graduations, weddings, births and so on, but right now, he needs us.

Hope that you can speak to your Daughter and explain how difficult this decision is for you, and maybe she will understand.

Best of Luck, and I am praying for John.

Lisa

Re: I need some advice

Cholangio is typically very slow growing.  It's quite possible that waiting another week or two before starting chemo will not have any negative effect on the outcome.
It's also true as others have noted that usually the first course of chemo does not produce the worst side effects.  Chemo is cumulative.

I understand how difficult this is for all of you.  Ultimately this is a personal decision as is so often the case with what we all face fighting this disease.

-Peter

Re: I need some advice

Thank you all so much for your kind words.
I really knew in my heart where I should be, it was just so hard when she started crying.
You know how Moms are.

John is Ambers step-dad so she doesn't have that bond since we've only been married for 10 years, (whoever said you can't find love late in life was crazy lol).

I have already told her, so I will not change my mind. I have decided to send her a cell phone so we can still talk while she's in labor. She's going to have an epidural so that will keep her comfy enough to talk...I dread the bill though lol.

Thank you all so much, the guilt I have been having is gone. My place is with my husband who I love so very much and am hoping the chemo will give us time for us Both see our new grandson.

wink Charlene

Re: I need some advice

Charlene,

I think you made the right decision. Stay Strong and enjoy John. Best of luck and early Congrats on the new Grandson.

Lisa smile

10 (edited by JeffG Thu, 27 Sep 2007 13:01:59)

Re: I need some advice

Charlene,  I'm so glad you decided to stay home with your hubby.  I can imagine how John's emotions are peaking about now.  It's not easy when battling your hidden emotions especially that one of (What If ?) keeps replaying. Just a thought--- maybe setting up a web cam to see your grandchild until John is up to going.  Even the birth maybe.  It really works great.  I see my nephew's twins in England every week practically.  They are old enough to respond to all the funny noises and faces I make at them.  My wife sits down, with a cup of tea in hand and chats with her Mom and siblings 3-4 hours every week.  It really does feel great to talk and see each other when so far away.  And it's free! if your on line with high speed internet and got a web cam. You can get one for about $30 at Best Buy or Wally Mart.
God Bless You Both.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: I need some advice

i would stay with your husband.....i'm torn between others and my wife also...my wife gets my full attention while she is going through this....

Re: I need some advice

Hi Charlene,
I'm new here. My husband died on April 8, 2007, Easter Sunday, and I never left his side during his entire illness.  You will have other chances to see your grandchild, don't leave your husband alone. I told my daughter I couldn't watch my grandson at all when my husband was ill. She will understand. In the end you will make the right choice for you and your husband.
You are in my thoughts and prayers.'
Sandy