Topic: Mom's a Fighter

Hey all, 6 weeks of radiation did nada to the cancer, or help moms consistent pain. She came to er with dehydration and a swollen stomach. Four liters of water from ascites drained and a draining tube for stomach bile that makes her vomit.... Now a bit more comfortable. The onc wants to put in a gj pump (sp?) so we can remove tube from nose. I guess my question is how do I get nutrition into her when it will just drain away??? I would hate for her to continue to be malnourished, especially since she finally wants to eat. Can I time the drain to allow for some digestion? The cancer has now spread to abdominal lining and blocking bit of stomach, hence the drain. Chemo is not recommended as she is too weak. I was hoping gem/cis could still be a possibility. Having a hard time accepting what is coming, was hoping to get her some strength to give the chemo a go. She's been such a fighter. Any advice is appreciated.

Thanks, Kristina

Re: Mom's a Fighter

Kristina,

I'm sorry to hear of your mom's condition.  There may be some options for her.  For example, if she needs a gastric tube placed to drain the content of her stomach, they may be able to place a feeding tube lower than that, for example the jejunum.  Another option is TPN which is IV nutrition.
I think it would be important to ask her what her wishes are.  There are many who do not wish to receive nutrition in this manner.  I hope they can continue to keep her comfortable.

Take care,

Susie

Re: Mom's a Fighter

Kristina...I agree with Susie.  Personally, I very much favor gastric tubing for those patients with biliary blockage of any kind.  Although, the use of TPN is controversial for cancer patients, I found it to be the right thing to do for our situation; no regrets.  Your Mom’s physician is offering palliative symptom control for your Mom and ultimately that is what you are looking for at this time.  This is a tough time, Kristina, don’t hesitate from reaching out to others including, the great members of this site. 
Hugs to you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mom's a Fighter

Kristina,

I am sorry to hear what your mum is going through right now. I can't help with any personal experiences here as my dad never went through this, but I found a link that may be of use to you regarding feeding tubes -

http://www.macmillan.org.uk/Cancerinfor … pport.aspx

I wish that I could be of more help right now. I so hope that your mum doctors can make your mum as comfortable as possible and get some nutrition into her as well. And please know that we are all here for you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Mom's a Fighter

Thanks for your suggestions. We will be coming home tomorrow and have set up hospice help. All this is pretty foreign territory as I have been fortunate enough to not have anyone very close to me pass away from cancer.  My poor 55 yo mom is the first. I have asked the doc to lower her morphine as she was barely responsive today. Her ascites continues to build and I am not sure how that will be treated as we progress. Has anyone dealt with that with a loved one nearing the end? I despise this cancer for hurting my sweet mother and I'm terrified of life without just.  Thanks for listening, Kristina

6 (edited by marions Sun, 14 Apr 2013 13:31:39)

Re: Mom's a Fighter

Kristina...hospice will provide the support needed in keeping your Mom comfortable.  Ascities is not uncommon in end stage disease hence; there are numerous postings on it.  By entering the word in the search function, you will be able to retrieve the threads.  I assume that your Mom will continue to be treated with diuretics; keeping her legs elevated might also be of help. (That is if she is not uncomfortable with doing so.)  If physically possible, she may be able to return to the hospital for further draining of the fluid, but this varies from person to person.  Although, it is difficult for us to see extended abdomen however; given the large amount of morphine your Mom is given, she may just be quite comfortable  even with the excessive fluid retention. 
Kristina, the unfortunate thing about sedatives is that in order to make the patient comfortable he/she may be less lucid.  This happens to be the trade-off.  But, ultimately you would want to be assured that your Mom does not have any pain, is not vomiting excessively and is in the surroundings most beneficial to her. 
Kristina, too many of us have walked the path you are on.  It is a time of extreme sorrow and yet, simultaneously, it grants us togetherness in the most precious of ways.  Hold on to it, dear Kristina and try not to focus too much on the physical changes but rather look deep inside for the love you have for each other.  It is there.  You can feel it.
This may also be a time to reach out for support, here on this site and with a counselor or someone you trust. 
Anticipatory grief is hard to ignore - the reality is too clear - but try hard to hold on to the time you have with each other, as these are the most precious moments of all. 
We are with you, Kristina, all the way.  Please don't hesitate on reaching out.
My heart is with you
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mom's a Fighter

Thank you Marion, your kind words on a particularly rough day and night offer my little sister and me such comfort. The three of us are extremely close, and even when she can't tell me, out can't hear me, I appreciate knowing she feels our love. I know I am not the first to walk this road, and unfortunately not the last, but your thoughtful message make the night a little more bearable,  thank you.

8 (edited by marions Sun, 14 Apr 2013 11:41:00)

Re: Mom's a Fighter

Kristina...you are welcome.  Please know that your Mom will be comforted by your gentle touch and soft voices. Hugs and love to you, your little sister, and your Mom.  You are an awesome threesome
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mom's a Fighter

Kristina,

I am so sorry to hear about your Mom. It sounds like you are doing all you can to make her comfortable. 

My sisters and I were with my Mother then last few days of her life and we still talk about it.  It was hard for sure, but there was something special about it as well.  We talked a lot with her even when it didn't appear she could hear us.  We gave her a manicure, a shoulder massage when she wanted one, had all of her favorite foods around, and talked about old times and had some laughs.  Hospice was a blessing, filling in our gaps of information and being available to us by phone 24/7.

Sounds like you and your sister will be good support for each other during this hard time and afterward.  Sisters are a blessing.

Hugs
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Mom's a Fighter

Hi Christina,

Marion and Randi have very sensitively summoned it up.  It is very difficult to watch a loved one go through this.  I have just lost my 41 year old sister to CC and it was immensely difficult to watch my intelligent, articulate, in control sister, struggle with her decline.  I live 300 miles away from my family and I spent every opportunity I could travelling to be with my sister and the rest of the family.   My sister's morphine did need tinkering with - initially her tablets had to be reduced as her GP felt she was over medicated.  Other times it had to be increased to get on top of her pain.  The trade off was a Marion said, her lucidity but she was pain free.  She slept a lot and would drop off mid conversation.  We rolled with it, took our time with her and let her do things at her speed.   

We knew when the end was imminent and for a day and half, we were all with my sister (husband, son, my parents and other sister).   We sat with her, talked to her, stroked her hair.  She never liked a lot of fuss at the best of times so we kept the fuss to a minimum even then.  I am in no doubt she knew we were all there and in particular her husband.  Whenever he sat with her over the last day(to replace me for example),  her breathing changed.  I can't really explain it here but she definitely knew.  The love between them was palpable. 

I'm glad you are close to your sister and you have each other.  Me and my other sister bumbled along together and still are - I'd be lost without her.  Take all the support you can from each other, from hospice care and of course here.

Sending you lots of virtual support.

Clare

In the stars now . . . .

Re: Mom's a Fighter

Dear Kristina, I am very glad and relieved that you have called in Hospice. Comfort is the major key now and hopefully they will keep her comfortable. I had ordered Teddy a Hospital bed as they are much more comfortable, put it in the light and airy living room so it was comfortable for him, family and visitors. And of course that is where the big TV was. So I had the Hospital bed, a commode, a walker and a wheelchair. He had used all but the commode. I am concerned about lowering the dosage of the Morphine. If the Morph is not kept at a higher level it is harder toward the end to keep the pain under control. I would rather Teddy was sleeping more than having more pain. Remember that as you get closer to the end, even if Mom is sleeping alot she does hear you. It is important to keep telling her that you love her and that it is ok for her to go to her peace, she DOES hear as hearing is the last thing to go. I know this sounds weird but it is a precious time, Some things my daughter and I witnessed made us have no fear and we felt so privileged to witness things that happened. It was not scary at all, I do have an article about the 10 last steps to Dying.  If you would like it please e mail me and I will send it to you. Hospice also has a good booklet on what to look for. Teddy followed it pretty closely. This can be a very precious time as Teddy told all the Nurses that we were on our Honeymoon! Be strong and feel free to email me if you like.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.