How can I help my family watch me die?

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Re: How can I help my family watch me die?

Postby Caat55 » Thu May 17, 2018 6:35 pm

As you can see from my signature, I was diagnosed stage 3 rectal cancer in September. 23 years ago I watched my brother die of colon cancer. I spoke to him every night, in the middle of the night when I would get up to nurse my infant son and his brain was racing with everything he wanted to share. I wrote some of it down but most of it rests in my memories. We took a lot of pictures, with a real camera and on proper photo paper. We made up stories to share with my children about their uncle and I put the pictures in their book. We had a family vacation at the beach with our parents, my children and his wife. The sea shells are in a place of honor with the ocean glass he gathered with my 2 year old daughter. She remembers him from stories and pictures, my son was too small but enjoyed seeing the pictures too. My daughter used to tell me that Uncle Paul would sit on the end of her bed when she was going to sleep, she said he was her special angel. I love that image and believe she may have been right.

Make memories, allow them to love and spoil you, and do the super hero pose because you are one.

55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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Re: How can I help my family watch me die?

Postby susie0915 » Thu May 17, 2018 7:43 pm

I hope you can tell them all how much you love them, and how important they are all to you. My heart is breaking thinking of what your are feeling and going through. I am praying that you find peace and comfort in the arms of your family.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

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Re: How can I help my family watch me die?

Postby Robino1 » Thu May 17, 2018 7:47 pm

juliej wrote:I agree with others that you are a remarkable woman, deeply empathetic to the feelings of others, and an absolute angel for worrying about how your death will affect them!

Many, many people, when they're facing an impending loss, power down their ability to feel. "This is tough but I can't think about it now" becomes their mantra. Sometimes what they mean is that they don't want to think at all, so they become absent intellectually, emotionally, and spiritually. So how do you encourage them to stay in this place instead, with their hearts open, where there might be no future for you and the loss seems simply unthinkable? One things is certain: you won't be able to keep your distance from them. There will be layers and layers to this time, some moments better than others, everything from listening to the silly babbling of empty distractions on the television set in a neon-lit hospital room, to genuine heart-felt moments of connection that will make you all stronger and bigger than you were before.

Leave your expectations behind and ask everyone (including you) to just do their best. Sometimes doing your best might involve laughing in the face of the shitstorm you're facing, sometimes doing your best means caring way too much about the people you're leaving behind. If everyone stays right here in the moment, though, as hard as it seems, a funny thing happens. By refusing to look away, you can see past the petty distractions to what's really important in life. It doesn't work for all families, but if your family is anything like you, it can be a time of coming together rather than a pulling apart.

I don't know what it's like to die, but I do know what it's like to live as a Stage 4 cancer patient, with the Sword of Damocles hanging over my head. Somehow, by making room for the truly frightening treatments inherent to surviving this, life feels more valuable and more gratifying. I can see past the noise and trivialities surrounding me. In many ways, I am finally awake.

So here is my advice: Savor every moment of your time with them. Live loud and live joyfully and let them know what would make you the happiest. Because I guarantee you this: what will ease their pain and make this even the tiniest bit more tolerable is knowing that they are making every day of your life special. Ask for what you want: if you want to be surrounded by family and friends all the time, say so. If you want quiet time with your baby, say so. If you want to be distracted by non-cancer-related conversations, say so. Ask your mom to make your favorite dessert. Ask for hugs or prayers or whatever gives you peace.

It's excruciating to live knowing what's coming but everyone lands here at some point. Most people land here a day or two before they die. Some of us land here before our time and we get to see the world through clear eyes. Darkness and sunshine go together and no matter how f*cked up the whole situation is, the love you leave behind will be a living legacy for your baby girl, your husband, your family, and everyone who knows you.


This is spot on and absolutely beautifully said.

I know I have thought about dying from this and also worry about how my passing will affect my loved ones. I've given thought about what I would want to do for a loved one should I ever be on the other side and one if them were in my position.

The biggest gift to them would be to let them help you.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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Re: How can I help my family watch me die?

Postby ams5796 » Thu May 17, 2018 9:53 pm

You truly seem like a beautiful person. I wish love and peace for you and your loved ones.

Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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Re: How can I help my family watch me die?

Postby Rainykatie » Fri May 18, 2018 1:32 pm

Dear lovemyameliasky,

I am so touched by your post and by your loving thoughts on this incredibly tough topic that I just have to comment. I feel that I might have some perspective to offer, and I hope what I have to say is helpful. I just was the caregiver for my mom through her cancer process (also diagnosed with Stage IV, and it rapidly spread everywhere- bones, spine, ovaries, etc etc). She lived for 8 months with me and was in hospice in my home where she passed peacefully with us by her side. I also have young children. They weren't at home the day she passed, but they experienced the dying process a bit.

The whole experience changed me and in a way, less fearful of death. I admit as a caregiver I initially was completely terrified for the months leading up to my mom's death. Mostly terrified of the unknown- I had never been through this and our culture is so taboo about death even though it is something we all go through. I did make sure to tell my mom anything I needed to while we could still have conversations. This is important because as the final days near, the dying person enters a different state of consciousness and you can't be certain when this will happen. My mom knew she was going on a journey. She was looking for her plane tickets, for her luggage. I assured her that I had all those things and that everything was set. Your caregivers should know you might begin to live in a different place before you go, and that they should not try to bring you back and rather experience it with you.

I am not a person of religious faith myself, but I was struck by the deeply spiritual nature of the death experience and it has changed me into a spiritual person. Never have I been so touched by such sorrow and such beauty at the same time. Having just gone through labor with your dear precious daughter, your family will recognize that there are such striking similarities between birth and death. Both are a process that the person goes through, both are difficult journeys for souls to travel, and both are part of a beautiful cycle of life.

In the weeks before my mom passed, the rhododendron bush outside her window bloomed, just the side of the bush that she could see. It was December. Her last sight was of a hummingbird visiting the rhododendron flowers. I told her a hummingbird was there, and she turned to look, smiled, and then closed her eyes for the last time and slipped into the active dying process. This is the most sorrowful but beautiful experience I have ever had. It was as if she was expecting the hummingbird's arrival, and she could go now that she had arrived. And while it is really, really, really, hard for family members to go through this, at the same time I wouldn't have had it any way. Your loved ones care so much for you, they will be honored to care for you during your passing, too.

The hospice care was incredible. I never knew that there was a whole fleet of people out there working in hospice and they restored my faith in humanity, just knowing that these angels are out there. They lovingly took care of my mom and our family during her final days. They came at all hours if we asked. They bathed her while she was going through the dying process. They hugged me, they assured me that we were doing everything right. They gave us as much support as we needed. I know they will support your family too during this challenging and spiritual time.

I live in Oregon, a "death with dignity" state, and my mom had originally planned to do that route as she hated the idea of suffering or having us suffer too in caring for her. But, it didn't work out for a number of reasons. The main reason is that it happened rather fast and the death with dignity prescription requires the patient to drink a large amount of liquid- something that is really tough to do toward the end of a battle with cancer. If this is a route that you want to go, it is important to get the process started early enough and may require you to go before you are completely ready since you must feel well enough to do this. This isn't something they tell you early on, we discovered. In hindsight, that would have been equally rough on our family so doing a natural death and hospice was really the right thing, for us.

So, what can your family to do help prepare? I think educating themselves about the dying process and what it looks like is a great idea. There are a lot of great resources out there and at first it is really tough to read, but I felt better being prepared. Lots of times caregivers can get frustrated trying to make a hospice patient eat or drink, when that isn't what they need right now. There are also different stages of dying that it is helpful to learn to recognize so they know how to respond.

Make sure they have enough support, if possible it is good to have multiple adults around so that people can take turns caring for you and keeping vigil when the active dying process started. There were 3 of us - my mom's partner, my brother, and I- and we could take shifts sitting with my mom those last few days so we had opportunities to sleep. Yes it was an often agonizing experience but it was also a special time for our family and we all feel closer now and bonded in our love for my mom, which I know would make my mom happy if she knew. However, at the same time, you don't want to have people there whose presence may not be constructive or who make more work for your loved ones. It's a balance.

I love the idea of writing letters, especially to your daughter. I know she will treasure them deeply throughout her life. I keep looking throughout my mom's stuff for something she left behind for me, but she was in denial of her death for a long time and didn't think of that.

I thank you for posting and for giving us the opportunity to share in your beautiful life and story. I hope that my comments about death aren't too troubling, my intent was to share the spiritual nature of my mom's peaceful death and to let you know that while it is hard for families, it is also an incredibly loving and special time.

All my love to you and your dear family,

Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

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Re: How can I help my family watch me die?

Postby Nick » Fri May 18, 2018 3:54 pm

Wow, what an amazing spirit you have! You sound like an incredible person to me.

All I know is from my personal experience - and yes, at the time I was have done anything to not face it - but looking back as my wife was in hospice, it was a privilege to care for her. I was there for her, and I bet your family wants to be there for you.

As we got near the end with my wife, there was one time, I can't remember exactly, we were trying to clean her or something, and I thought I hurt her. I just said I was sorry, and I knew she didn't like it, and she must be mad at me. She started shaking her head no, and actually indicated she wanted to stand, and just hugged me. She hadn't stood for days, and didn't after. But she was telling me it was ok, and she still loved me. It was an incredible moment of love, and of healing, and I still tear up about it. I can still hear the hospice nurse behind me whispering 'Thank you Jesus'.

Give your family the chance to show you the love they need to give you. That's how you can help them.
Caregiver to Angie, 47, mother of 3
DX Feb 3, 2011, mets liver & lungs
resection, colon twist, TACE
FOLFOX/avastin - 12 sessions
Maintenance 5FU + avastin
Progression 7/12
starting FOLFIRIOX
Hospice 1/9/13
Angie passed January 26, 2013 at 3:13 am.

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