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Caring for Mom with terminal adenocarcinoma

Caring for Mom with terminal adenocarcinoma

Posted by Joanna on Jan 6, 2019 3:28 am

My mom was diagnosed with liver cancer on December 3rd. Then on the 13th, the diagnosis was extended (or whatever the word is) to include her kidneys, lungs, breasts, thyroid, and lymph nodes and was renamed adenocarcinoma. It's a cancer of the epithelial tissue of the organs. She's not lucid anymore. She had a few good days last weekend but now she's just confused and cant hold a conversation. She's in a lot of pain so they're giving her dilaudid which is why she's all unfocused. Today, the doctor on call told her best friend that the cancer is in her bowels and that she has about a month to live. We have the first appointment with the oncologist on Wednesday in Abbotsford. I guess then we'll find out if there is any treatment. Mom was talking about fighting her diagnosis with everything possible. Im so overwhelmed and scared and sad. Im the eldest kid and the PoA for my mom. I just want my mom to not be in pain and maybe have a bit of happiness before she goes. Id like her to look at me with clear eyes again and not have the tremor in her hands. Id like her to be able to go to the toilet on her own. And I dont think those things are going to happen now. 

Re: Caring for Mom with terminal adenocarcinoma

Posted by ACH2015 on Jan 6, 2019 9:38 am

Hi Joanna‍ 

I am going to tag Aly‍ and Brighty‍ into this post as well. Both have experienced caring for a loved one diagnosed with cancer, and I'm sure can offer insight for you here.

I'm sorry to hear of your mother's diagnosis and you find yourself here. But you have found a good place where we understand what you, your family and mother are going through.

From what you have told us, your mother has been diagnosed with  stage IV metastatic adenocarcinoma. I have been treated for the same type of cancer myself for the past 2.5 years.

I'm going to break down your post into the many aspects discussed to offer you what I can from my experience and understanding of the process moving forward.

Once the oncologist has determined the origin of the cancer, a treatment plan will be formulated for your mother. If the cancer originated in the kidney, and is the same throughout the other organs it has spread to, your mother will be treated for stage IV kidney cancer. The drugs (chemo, immunotherapy, radiation etc...) are selected to deal with the metastatic (cancer that has traveled to other parts of the body)  cancer as well as the point of origin.

Understanding the goals of the treatment are very important. Palliative treatments for pain management, and improving quality of life, treatments to control the cancer, or treatments meant for curative purposes can all be very different. They can also be used to treat one or more of the goals I mentioned above.

Pain control is very important. Pain can quickly drain strength and weaken both the body and mind due to the stress it puts on the one going through it. Palliative pain control is meant to relieve the symptoms. Talk to the oncologist when your mother gets her first consult to see if there are alternative drugs, and dosages that will allow greater clarity for her while controlling her pain. There is a fine line, and it can be difficult to find that balance. The important issue is controlling the pain your mother is in.

It is good for you and your family to know that is is your mothers desire to fight her cancer with everything possible. That will help you make the upcoming decisions on her behalf. I was in a similar situation. My father was diagnosed with brain cancer in 2016. He quickly lost his ability to reason. When it came time to decide on a course of action, it was easier to make decisions based on the knowledge that my father wanted to fight and seek treatment from the onset. 

This situation you are in is very difficult, overwhelming and scary. We all share those issues here, and understanding the process moving forward will help you to act in your mothers best interests.

Of equal importance is taking care of you. Stress and  all that comes with it needs to be realized and dealt with. You have reached out here for support, and that's a great start. Family, friends and others will offer their support and assistance. Social Workers within the cancer centers are there for you and your family too. Seek them out for support, guidance and unloading the emotional strain thrust upon you at this time. It's very important to not carry this load yourself. Have others with you to help take notes when talking to the medical team. Doctors don't mind recording the consults - as long as they know its being recorded.

I am going to provide you with some links from the Canadian Cancer Society that I found useful in my cancer experiences, and still do. These booklets have wonderful general up to date information, and can help guide you through this experience.

http://www.cancer.ca/~/media/cancer.ca/CW/publications/Advanced%20cancer/Advanced-cancer-EN.pdf

http://www.cancer.ca/~/media/cancer.ca/CW/publications/Coping%20when%20you%20have%20cancer/32127-1-NO.pdf

http://www.cancer.ca/~/media/cancer.ca/CW/publications/Pain%20relief/32059-1-NO.pdf

http://www.cancer.ca/~/media/cancer.ca/CW/publications/Questions%20to%20ask/32099-1-NO.pdf

Please keep in touch with us, and let us know what information the oncologist gives you at the consult.

We are here to help you and your family.

Keep well

ACH2015 - Andy.

Re: Caring for Mom with terminal adenocarcinoma

Posted by Brighty on Jan 6, 2019 7:45 pm

Joanna‍  welcome to cancer connection.     You have come to a wonderful  site eith awsome members who can help.    I'm so sorry about your mom's diagnoses.     There's just about nothing more painful  than watching helplessly as the person  you love suffers.    Your mom sounds like a fighter! !!!!  That is a great trait to have especially  now.     I looked after my fiance who had stage 4 esophageal  cancer.    It nearly destroyed me.      I completely  fell apart until I developed  coping strategies.     ACH2015‍  was spot on with many of his statements.     At the beginning  of this ordeal I was left alone to care for my fiance.   His family  bailed and thought I was good to go to handle tbe caregiving by myself.    Well I wasn't. And I was too broken to ask for help.    I cried non stop and withered away.      My mom was the one to intervene on my behalf and screamed at his family to step it up.     Once she did though.. they stepped up and we divided the duties and a load was taken off me.    I will never attempt to take care of anyone again like that without demanding help.    It is too much for one person to take on no matter how strong you think you are.     So ask for help.    Once the family stepped in.. it also gave me time for self care.   That is essential  to survival.     Even if it's only a few minutes  per day take that time for yourself to do what you like to do.   Or take the time do to what you need to do.    When I was a caregiver  I neglected  myself and my appointments.   Don't ever neglect  youself.      Seek a support system wherever you need to.   I relied much on the oncology  social worker who was wonderful and my therapist.   I cried oceans of tears in both their offices.     But they were wonderful and a great resource.    It's not an easy situation no matter how you look at it but all you can do is the best you can for your mom and yourself.     For your mom all you can do is let her know how much you love her and you are there for her.   You are already  doing that.    For yourself all you can do is take care to eat properly, sleep properly and do whatever else you need to do to survive  this difficult  time.    There's no shame in crying or asking for help when you need  to or taking a break when it becomes too much.   I wish you and your family  the best going forward.   

Re: Caring for Mom with terminal adenocarcinoma

Posted by Brighty on Jan 6, 2019 7:59 pm

Joanna‍  also I forgot to add when you have help you can also  bring that extra person the appointments with you.    It often takes a third party to process information  and write things down.    My fiance was too depressed  to listen to anything, and I was plagued  by fear and anxiety  to process anything  either but once his dad started  coming to appointments  we got information.    He was the calm rational one in the whole mess so he took in the information .   Have some questions  you want to ask prepared  in advane and write things down.    Its too much to remember  everything  if you don't have a note taker.     And if you don't like what you hear don't be ashamed  to get second opinions.     

Re: Caring for Mom with terminal adenocarcinoma

Posted by Cynthia Mac on Jan 7, 2019 8:32 am

Joanna‍ , You’ve got great advice so far. I, too am the eldest, and was the primary caregiver for my father during his bout with cancer last year. I just want you to know that your siblings may or may not react in the manner you expect. I hope, for your sake, that they step up and make sure that you get what will be much-needed respite as you care for your mom.

If you don’t have one already, I recommend that you get a notebook between now and Wednesday. I used a tabbed one for my Dad, and assigned various sections for various purposes - the first one was to record all his current medications and medications to which he had reactions in the past. This section was also where I put the contact information for any medical supports - doctors, home care nurse, counsellor, dietician, etc. The next section was where I recorded any appointments and requirements for those appointments - nothing to eat after midnight, that sort of thing. The third section was for appointment back-and-forth. Any questions we have about upcoming appointments went there, and I was able to check anything off and write down answers as Dad and the oncologist talked, and if anything was being missed, I could speak up. This gave us an on-going resource, and a place to back to if we got conflicting or confusing information at an appointment.

Sometimes it can be a simple thing like a notebook that can give you a sense that you are grounded in all of this, even just for a moment, and those moments can make a big difference.

Do let us know how it goes on Wednesday, when you have a chance.

Re: Caring for Mom with terminal adenocarcinoma

Posted by Aly on Jan 7, 2019 8:28 pm

Hi Joanna‍, welcome to Cancer Connection. I wish we were meeting under better circumstances, but I am glad you have joined. So far you have received plenty of great advice from ACH2015‍ , Brighty‍ , and Cynthia Mac‍ - I will try to add on this advice without becoming redundant.

In October of 2017 I was in a similar position as you were, my mom's previous lymphoma having recently metastasized to her pelvic bone. Watching her come and go between being being present with me and lost to the medication was incredibly difficult to witness. I understand how hard it is to watch someone you love go through so much pain. There may be alternative medications for pain management that can help your mother, I recommend talking with her oncologist to get a better idea on what is available for your mom. My mother and I trialed three different combinations of pain medications to finally find the one that not only eased her pain, but made her able to interact with the family.

I wish both you and your mother the best. If you have any other questions or concerns, please do not hesitate to let us know.

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