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so sad..again :(

3greatkids
Posts: 45
Joined: Dec 2005

Hi all,
Well, as some of you know, my husband Mike was dx. at 39 with stage 3 in Sept. '05...extremely happy to say he is NED and doing WONDERFUL!! I posted last month regarding my mom...dx. in Oct. '06 with bladder cancer, they removed one kidney, ureter, and cuff of bladder. We were told it was a very aggresive form, but felt that everything was good. We went for a CT in March, it showed possibility in Lung and Liver, so they were thinking maybe radiaiton..no chemo as she had been through to much..that brings us to the here and now. I took her for her most recent CT scan last week and in the radiologists words, there has been significant change in the past three months. It is now in her pelvic region, and lymph nodes. We were told that they will do 10 rounds of radiation to treat the symptoms, but it would do nothing to beat the cancer...they said it is a very aggresive form and that they can do nothing for her. Wow!! I am so terrified to lose her. They told us that she would have less then a year...I cried and cried thinking about this last night. Then I thought, maybe it will be longer, but I just need an opionion..drs. will not give me the answers, and I don't know if anyone can, but I really don't know what to expect. When they say no treatment then is there much hope? We have had 2 opionions from different hospitals. My mom does not know any of this other than there is a tumor in the bladder. She does not know about the one in the pelvic region or the lymph nodes. Should I tell her, or wait and see if she asks. Who am I to decide if she knows or not? I just wish I knew what to expect...I know many people have thankfully lived much longer that a dr. has predicted, but with them saying they are going to do no treatment won't the cancer just take over her body? How long does this take? AHHHHHH, I feel like I am going to explode. One more question (sorry), but any advice on what to tell my 3 kids about their darling Grandma. They are extremely close to her, she lived with us for 10 years..they are 12, 10, and 7. Do I wait until things start to get really bad..oh as I write that I am crying thinking about that. She was so strong for me when I needed a shoulder to cry on when Mike was dx. Anyhow, I am so sorry to ramble, but as I have learned from the past, the most sensible answers come from you people who have been there and are still there.. so please know that your help is greatly appreciated each and every time.
Take care..stay well
Sylvia

sladich's picture
sladich
Posts: 430
Joined: May 2007

Sylvia,

I'm so very sorry you have to go through this. I can't imagine how you feel. Sometimes I think caregivers have it the hardest because they feel helpless. Personally, I would want to know. There might be some things your mom may want to do. As far as telling the grand kids, I'm lost here. I would think it would be best to be truthful. I'm assuming they are doing the 10 rounds of radition to help with the pain. Doctor's don't know everything as far as how long. Attitude has a lot to do with it. My thoughts are with you and your family during this difficult time.

Debbie

dawnsweetness's picture
dawnsweetness
Posts: 2
Joined: Jun 2007

Sylivia,
In June 2004 my mum was diagnosed with lung cancer. The only words I can remember the oncologist saying were inoperable and incurable. She was told that she had 6 mths to live, she was only 55 and so dearly loved by all. At that time my children were 14,12,10,and 5. It was very difficult to tell the children but we told the eldest 3. I found that being honest,yet never giving all the facts and always keeping the hope was best for our situation. There will be alot of tears and sadness, but I think you will find you and your family will gain support from the kids. They are quite strong and it will help them deal with alot of issues later in life. It will make them stronger! My mums fight, and it was a fight ended Jan 2007. 18mths after dx. of course I wanted her to live 4ever, but it wasnt to be. We miss her dearly she was my best friend, I spent every day with her. She brought my kids up with me. Any way you have to keep the faith, I dont do prognosises. Keep fighting I know it helps and who knows....NOBODY DOES!!
Ive just found out 2day that I have squamous cell carcinoma of the rectum. Now its my fight! I told my eldest 3 again they were brill! I dreaded it. I said to my mum b4 she passed away that I couldnt live without her. Now I realise I have 2!!!
Take care xx
Dawn

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Sylvia,
So sorry to hear about your Mom. What a lot you are having to deal with. You raised some deep concerns about what and how to communicate in your role as daughter and mother. You asked for advice so here are my thoughts as a son and father...
"Should I tell her?" Wow... tough role to be in. Seems to me that this role belongs primarily to the doctors. I know I would always want to know. You may want to talk to her, share what you do know, and ask how she would prefer to get information about her results and treatment options. A big part of survival is "empowerment" and that often begins with being informed. Your Mom has got some very difficult decision ahead she'll need your help in making them.
"What to tell the kids?" Our daughters were 8, 7, and 5 when their Grandfather was diagnosed with a very agressive lung cancer. We shared as much as we could with them, since they knew something was wrong anyway. They worked through it with our help and were well prepared when he did eventually die. Sounds like your kids are old enough to be upset if they are left out of the loop. Kid's today live with a lot of awareness about cancer and they've got good resources to cope... with parents at the top of the list. They can also be an awesome part of the support team... Talk it over with your husband, agree on an approach, and do it together.
I'm with those who don't like to dwell on "prognosis". I'm concerned that they can become self-fulfilling. That being said... When my father-in-law had lung cancer he went ahead with the radiation even though his prognosis was poor. We're not sure how it helped, but at least we weren't beating ourselves up over "should- haves" when the end did come. He, and we, did everything we could... sometimes it's just not enough...
I'll quit now before I start sounding like Dear Abby!!

Blessings...
Rob

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Dear Sylvia,

I am so happy to hear that your husband is doing so well, but sad to learn of your mother's illness. You really have been through a lot in these last two years. I have no words of wisdom, but I know you will make the right decisions for both you and your family. Please know that I will keep you in my thoughts and prayers.

Hugs,

Kay

AuthorUnknown
Posts: 1560
Joined: May 2006

Do not tell your mother that she has got whatever long to live. This is very cruel. Keep her comfortable.

Your children don't need to know yet. When the time comes, you can tell them then.

Have mercy on your mother and your children.

3greatkids
Posts: 45
Joined: Dec 2005

Dear information,
thank you for your reply to my post. I do not recognize you...I looked under the personel web pages and did not see yours. I just wanted to make sure you know that the reason I was asking about an opinion regarding sharing information with my mom was so that she could make informed decisions regarding things that need to happen...in no way do I want to make her life worse than it already is..and yes I have mercy for my mom and kids. Once again thank you for your reply.
Sylvia

AuthorUnknown
Posts: 1560
Joined: May 2006

Yes, Sylvia, I know the reason you were asking for the opinion. Your mother can make informed decisions without knowing that she has short time... Let her have peace of mind. I would never told anyone the truth like this. God Bless you and your mother.

jams67's picture
jams67
Posts: 927
Joined: May 2006

I'm surprised that the doc is talking to you instead of your mom. Personally I would rather know as much as possible about my health so that I can make plans for the future.
The children have a right to know that your mom is not well, but that you are looking forward to her getting better. (This is all true.) Usually, children are too wrapped up in their own lives to give a great deal of thought to others. Don't hesitate to answer their questions, but you don't need to go into great detail.
None of us know when life is going to end, but we all look forward to tomorrow. Enjoy the moment. The gift is the Present.
Jo Ann

mindy10
Posts: 183
Joined: Jul 2005

HI SYLVIA, IM SO SORRY TO HEAR ABOUT YOUR MOM. WHEN MY DAD WAS AT THE END OF LIFE WE DECIDED NOT TO TELL HIM BECAUSE WE KNEW HE COULD NOT HANDLE IT. WE BASICALLY TOOK DAY BY DAY AND SPENT AS MUCH TIME AS POSSIBLE WITH HIM. WE MADE SURE HE WAS NOT IN PAIN. I REMEMBER HIM ASKING ME HOW MUCH TIME HE HAD AND I KNEW IT WAS ABOUT 2 MONTHS (ACCORDING TO THE DR'S) BUT I DIDNT HAVE THE HEART TO TELL HIM. MY BROTHER TOLD HIS KIDS THAT PAPA WAS SICK AND WOULD NOT GET BETTER AND ITS IN GODS HANDS. HE TOLD THEM TO BE PREPARED THAT HE WOULD GET WEAKER AND WEAKER EACH DAY. HIS KIDS WHERE 8 AND 13. SO ONLY YOU KNOW HOW MUCH YOUR MOM CAN HANDLE SO THATS HOW YOU SHOULD MAKE YOUR DECISION ON. AND WITH GETTING THINGS IN ORDER. WE DID IT ALL FOR MY DAD OURSELVES SO HE WOULD NOT HAVE TO WORRY ABOUT IT. GOOD LUCK MINDY

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