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Supporting a family member who is choosing not to continue with chemotherapy

Supporting a family member who is choosing not to continue with chemotherapy

Posted by KatieLiz on Apr 29, 2020 8:33 pm

Hi.
My name is Katie. In late January my father passed away suddenly from small-cell lung cancer. Two weeks later my mother had emergency surgery to remove a malignant blockage in her intestine. After a slow recovery she started chemotherapy...a combination of I.V. and oral medication. I was staying with her during her first round and she deteriorated rapidly. She was hospitalized with extreme dehydration. It turns out she was suffering from bowel ischemia which was causing extreme vomitting and diahrea. She was confused and not making much sense when she went into the hospital. 10 days later she is home and doing well...very weak but eating and doing things she enjoys, like reading and writing in her journal. Today we had a telephone oncology appointment and her doctor suggested that we start again but with I.V only. He feels that it will be more comfortable for her and reduce the chances of spread or recurrence  from 65 to 45 percent. During the appointment she agreed but later said she has changed her mind. She has had so many emotional and physical traumas in the past 3 months that she just wants it all to stop. We,h family so want her to give it another try. The ischemia was the cause of her extreme reaction to her first round and we really hope the the will try this second option before deciding to abandon treatment. Our dad never had a chance to have chemo and we are just trying to hold on to mum. Dad was 73 when he died...we want mum to have as many years as she can.
Has anyone else experienced a similar situation? We want to respect my mum's decision but we also want her to see through her grief and diagnosis. We think that part of her decision is that she doesn't want to burden us with her care...she has hip problems that limit her mobility and still lives on her own in the family home. Looking for the advice of caregivers and people currently undergoing treatment.

Thank you.

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by Brighty on Apr 29, 2020 8:59 pm

KatieLiz‍  so sorry for the anguish you are going through.     The loss of your father and now having to come to grips with the reality  of your mom's situation .   There are so many reasons why people  decide  to stop treatment.     Perhaps  other health issues, age..and now her greif over your father.    Both of you have the right to feel the way you do.    I can understand it from both sides.    You lost one parent  and can't bare to lose the other.   She might be thinking quality  time over quantity.       Have you asked your mom her reasons?     Whatever the reasons ultimately  it has to be her decision.       might she be open pallative treatment as an option to keep the symptoms  under control?    No matter what the final decision  is , don't let it change what you  have with your mom.     Spend quality time together  and make memories with her.     Play favorite songs, get her recipes,  watch favorite  movies together.     Lean on your family for support    and don't forget  to care for yourself  too.   We are here to listen and offer support as well as suggestions.   Feel free to post when you need to.    
Help is out there. All you have to do is reach out.

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by WestCoastSailor on Apr 29, 2020 10:16 pm

KatieLiz‍ 

Grief piled on grief. It's hard to sort out sometimes the feelings and emotions around loss and death. Your mother's change of heart isn't unusual. Nor is your reaction to it. It is natural to want more time.

Creating a safe space for your mother to make her own decision is important. One of the questions that might be asked of the oncologist is the importance of immediate followup treatment. Perhaps when she has regained some more strength her decision might be different. Is delaying treatment an option?

In the meantime following some of Brighty‍ 's suggestions about memory making and spending time together may be the best that can happen. Another way to look at it is that 65% isn't really a huge difference from 45%. Eating well, exercising, reducing stress are important for any cancer patient. Chemotherapy is a support to stop metastasis but it isn't the end of the world nor is it a guarantee. For most patients quality of life is important. Exploring that and supporting that may be the best thing that you can do for your mother.

Let us know how things go.

Angus
My story: http://journey.anguspratt.ca

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by Cynthia Mac on Apr 30, 2020 9:56 am

KatieLiz‍ , I know exactly what page of the “daughter’s handbook” you are on.

Two months after we suddenly lost my Mom to an unknown heart condition, my Dad was diagnosed with lung cancer, and I, already thrust into the role of his “chief administrative officer,” was all of a sudden also his appointment courier and caregiver. After his surgery, his surgeon sent him to an oncologist — we thought it was for a “meet and greet” but the option of chemotherapy was rolled out. Because of Dad’s age, it was a “straight up option” - the doctor said that if Dad was 30 years younger, he’d have been “strongly recommending” it, but knowing his age, (and the fact that it was only going to reduce his chance of recurrence by 5% - from 50% to 45%) he laid it out as an option. On the way home, Dad asked me what I thought he should do. The hardest words I ever had to say were these. “Dad, I can’t advise you on this. This is no different than if I was pregnant and seeking your advice. You’d tell me it’s my body and my decision, and this is your body, so it has to be your choice.”  I knew in that moment what *I* wished for, and what it would have meant, but this truly wasn’t my decision to make.

Dad had his chemo, and ended up with a recurrence, and the day I got that news I cried for over an hour, mostly over fear that this time I really was going to lose him. But, he’s still here, and he still misses Mom, and he’s back in treatment. I know that the day may come when he could be weary of the treatments (I’ve seen some of this after only 9 months), or that he’ll want to “go to Mom,”  and man, I’m steeling myself from that day. In the meantime, I visit as often as I dare under the current situation, I tell him I love him, and I keep busy doing things that help keep me energized and occupied.

It sounds as though you and your Mom have a pretty good communication line — like me and Dad. The way you phrased this “We want to respect my mum's decision but we also want her to see through her grief and diagnosis” would be a good way to open the conversation, I think. I also agree with Brighty‍  And WestCoastSailor‍ - when she feels a bit stronger after her recent episode, she might feel more like taking on treatment.

I’m so glad you’ve reached out and hope that this helps you.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by Lacey_adminCCS on Apr 30, 2020 11:59 am

KatieLiz‍ 

I'm glad you reached out here. Please know we will continue to be here for you. 

You have received some great information and suggestions above. Your Mom might also find it helpful to sit down and have an open conversation about how she is feeling and she may be able to help you better understand her choice. It's okay to express how you feel too. I believe there is  a way to do this while still respecting her choice and not making her feel pressured. When my Dad stopped treatment I was honest with him about not wanting to lose him and my fear. After hearing him out I understood what was important to him. That makes it sound easy-it wasn't. However it did help me accept things a bit more.

I think you will find our Advanced Cancer booklet helpful. It may also be a good read for your Mom and other family members.

It's wonderful to hear that your Mom is reading and writing in her journal. 

Keep us posted,
Lacey

 

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by WestCoastSailor on Jun 8, 2020 8:44 pm

KatieLiz‍ 

It's been a little more than a  month and I'm wondering how things are going.

Angus
My story: http://journey.anguspratt.ca

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by KatieLiz on Jun 9, 2020 6:01 am

Hi everyone,

I can't tell you how helpful your words have been to me on this journey. 

I took the advice offered here and asked mum her reasons for not continuing and calmly explained my feelings to her. She sat with her thoughts and we gave her the space to do that. She eventually decided to continue with treatment.

A pic line was installed and she is tolerating this chemotherapy very well. So well Infact that while I do take her to appointments and stay a few nights while the pump is on, she is managing her care very independently. I am so proud of her for taking this on stride. She feels positive about what will happen next and is focusing for now on getting through it.

While I have been quiet in this group, the sheer number of stories and lived affected by this causes me often to pause and think about all of the different issues and outcomes that are possible. It is overwhelming but also comforting to know that so many other families are going through it.

Mum feels the same way when we go for treatment. All of the rooms are full and she always says to me, "Look at all of these brave people." I tell her, "Yes mum, and you are one of them."

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by WestCoastSailor on Jun 9, 2020 3:37 pm

KatieLiz‍ 

Tears in my eyes...

Sometimes you throw the bottle with the message off the edge and wonder. Thank you so much for circling back and reporting your good news.

Angus
My story: http://journey.anguspratt.ca

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by Cynthia Mac on Jun 10, 2020 7:13 am

Oh, my god, KatieLiz‍ , thank you for sharing this! 

Like you, and your Mom, I look at the fully-packed chemo wards when we go in and think “And I’m only seeing this one day out of 15 - they’re like this all of the other 14 days, too!” And, while we can look at it as “wow, so many people affected by this disease,” it’s important to acknowledge in the same breath, “and so many of them being helped by all of the work done in research, by the doctors who’ve seen so much of this, and the staff who help get them through it.”

I’m so very proud of your mom for hearing your concern and keeping her mind open to all possibilities. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by Mommaluvzreece on Jun 19, 2020 4:22 pm

I’m so happy to hear your mom has chosen to continue with chemo. 
I hope she is doing well!

Re: Supporting a family member who is choosing not to continue with chemotherapy

Posted by Cinderella59 on Jun 24, 2020 6:28 pm

Hi everyone I’ve got tears to my eyes too very touching words KatieLiz‍ 
I’m so happy that your mom reconsidered doing the chemo  When at first she heard about the options it’s really hard to know what to do. I have had breast cancer back in 2017 I had three months of chemo and I had a mastectomy so I’m glad I had the chemo but like my oncologist says there’s no guarantees that it won’t return or metastasize so that is really scary to me I think about it often I can’t let it go unfortunately. I’ll be 61 this yr. 

btw you had mentioned, “We want to respect my mum's decision but we also want her to see through her grief and diagnosis. We think that part of her decision is that she doesn't want to burden us with her care...she has hip problems that limit her mobility and still lives on her own in the family home.”  
When my Mum had a stroke we didn’t have the choice like you’ve had bc she ended up not being able to talk to us, communicate or eat. She had a feeding tube put in her stomach and I believe the stroke was on her left side so anything that has to do with these kind of impairments she wasn’t able to do any of them unfortunately and it was so sad for us her to see her like this. Then after 8 months living in a LTC she succumbed to her fate. I recd a call a day before my bday that she had passed in her sleep. But at least I got to see her that day. I even said to everything’s ok Mum don’t worry about anything. As if she was at peace and she left us. I was lucky in a way I had closure if you can understand that?  
Anyway I’m so happy for you and your Mum that she’s continuing with the chemo. 

Take care and cherish the memories you have together. 
blessings to you all. 
cindy
stay safe.