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Palliative care
Jkraynick
13 Posts
Long story short, I'm dying. We have stopped cancer treatments and transitioned me to palliative care to keep me comfortable. I have a 4 year old, and husband who I love very much and I'm really just looking for anyone who can relate to what we are going through. I'm not ready to leave my family. I'm not ready to give up, I don't think I ever will be.
So…. Hi!
12 Replies
Runner Girl
3153 Posts

Hello @Jkraynick

Thank you for sharing your story with us.

I'm going to tag a few folks to join us.

@WestCoastSailor @Mammabear @Kuching @Cynthia Mac @Boby1511 @ACH2015

Cynthia Mac
4214 Posts

@Jkraynick , I am so sorry to hear about your situation. I can certainly see why you would not want to give up.

You are welcome here: share as much or as little of your story as you wish. If you have any questions, or just want to talk about things that other people in your life don’t understand, this is a safe place.

I was caregiver for my late father when he had lung cancer. Much different situation, as mom had already passed away, and he was lonely and 80 years old.

@Jkraynick

Must be my week… I have a bunch of friends dealing with this situation. Young families facing death. We don't talk about it much and yet it in the cancer world it is a cruel reality.

I'm going to put aside my patient hat for a moment and come at this as a caregiver for my wife who died of pancreatic cancer. Six weeks from diagnosis to death. I don't say that for sympathy but to say I have become a crusader for palliative care. Most folks get there too late. But there are a ton of resources to ease this transition and as one of my good friends said to me today, “I will never accept this.” and that is okay.

Still there are some hard conversations to be had and denial doesn't make them any easier. Letting your caregivers know what you want this time to look like is important. What do you value?

There are some great resources. I'm a firm believer that information can make this better. I'm in BC and this morning discovered this page of links - some are Canadian, some are American but they all are designed to help families with children in this palliative situation.

www.bccancer.bc.ca/our-services/services/library/recommended-websites/living-with-cancer-websites/children-and-the-family-websites

I've been thinking a lot about my mom this week for a variety of reasons. She died of breast cancer when I was 17 - my first year of university. A few months ago I got a packet of letters that she had written to her mother (my grandmother.) It was wonderful insight into someone I didn't get to know as an adult. You may want to think about something like that for your children. Videos. Even just voice recordings will become a treasured legacy.

I hope you find peace in this unfair situation.

Angus

Runner Girl
3153 Posts

@Jkraynick

2 awesome responses already. I forgot to tag @Kims1961

While I have no experience with palliative care, I am a breast cancer survivor, I am also a domestic violence survivor and one of 2 remaining from my immediate family of 6.

My sister died at 16 after a car accident in April 1986. My brother died at 17 after a car accident in August 1986. My dad died from lung cancer in May 2013. My mom died from untreated diverticulitis in Jan 2018. I was diagnosed with breast cancer in May 2018. I am no stranger to losing those I love. Take this time to love your family, build memories, leave letters for your child. I found a letter my mom left for me and it means the world to me.

Please feel free to share with us as you feel comfortable. We are here to support you, be with you, share with you to make your time easier.

Kims1961
2339 Posts

@Jkraynick

Your post is powerful, so strong. It’s not easy to talk about death, our own in particular. Yet, the courage you are demonstrating by sharing your vulnerability, will help so many others on this site.

You have some excellent responses from the others. One wise member shared : “ We hope for the best and plan for the rest”….. @WestCoastSailor shared an excellent resource. Being able to talk about death - can help us live. We truly can have both, a good life and a good death.

Having someone to support you with this can really help. Someone you trust to be able to have a frank conversation. What is important to you at this stage? Your wishes for your daughter?

I’m going to attach some resources, in hopes they are helpful.

I am so grateful for your post . Please feel free to share here, if we can be of any help at all.

Kim

ACH2015
2486 Posts

@Jkraynick

I am sorry to hear of your situation, and my thoughts are with you at this time.

My father died of brain cancer while I was going through my first bout of cancer. He was kept comfortable in a palliative care facility until he passed away. Mom was able to be close by and stay as she chose.

My situation included a very poor prognosis, and I was looking at both treatment, and preparing for the end. What gave me comfort was having purpose, tying up loose ends, making arrangements, and taking charge of what I had in my control. My situation has changed from facing death, to facing an uncertain future, and never knowing if or when my cancer will return.

I sought out clinical trials, and followed the treatment plan assigned by my 2nd opinion medical team.

Be with your family and friends, if you feel up to it, take charge of what you have within your control and feel in control of what you can be.

Have a talk with your oncology team to check again if there are any other treatments including clinical trials you may qualify for toward extending your life. Hope is something we all need to have, along with acceptance of what is before us.

I send you positive thoughts and prayers, and wish you peace.

ACH2015

Whitelilies
2678 Posts

May I share……I just watched the video “Meet Ellie”…..and cried….about 7 kleenexes worth…..but learned….….but felt…….and I will listen to her words:

“Live Life Every Second”.

I promise Ellie.

Whitelilies

Sadie12
267 Posts

Hello @Jkraynick

I am sorry to read this post. I am at a different stage in my cancer, but as I have small children, I know that pain of thinking of leaving them too soon.

I don't have anything brilliant to say that would help…my friends here have done well. Just know that we are all hear, ready to listen.

Sending a warm embrace.

You are not alone.

Sadie

Mammabear
344 Posts

my heart is breaking.

I just lost a young friend (34) with a 2 and 4 year old to pancreatic cancer. Diagnosed May 2021. No treatments worked. She was told to make memories at Christmas and then chose MAID just after new years as her pain levels were intense and her liver was failing. The 4 year old is doing okay. The 2 year old cries for Mom.

This is not fair and I am pissed off right with you.

I have no magic words. Cancer sucks and you and your family are being robbed.

Memories - videos … what else can you do.

Jkraynick
13 Posts
I can't thank everyone enough for these responses. I've been feeling sorry for myself lately (which really isn't like me- I'm usually very positive) and really alone. Everything just feels unfair and a bit like a bad dream I need to wake from. It has been so wonderful reading these messages and has made me feel less alone and seen.
Thank you!
Kims1961
2339 Posts

@Jkraynick

We are here..and I know your heart is full of those who love and care about you. At the same time, it’s also ok to not be ok. Feeling anger, sadness, loneliness is a way of trying to find your way through. We don’t have to be positive or courageous or warriors…we can just be ourselves.

Expressing yourself here is also helping so many others - thank you.

Kim

elle29
1410 Posts

@Saddie12, @Jayraynick, @ Skylardaisy U may not know me here but really sorry to hear this end of life ? I hope u can share and keep each other company . Can still be embraced where u chose to be special warmed and held .A member here kayaks with others ha ing had 3 cancers . When is that going to end and not become an experiment to succumb to ! Not end the beloved person’s life !


I have been up with IDC diagnosed for 4 month 2020 & could handle that .From being diagnosed a cancer Adenocarcenoma happy to leave that behind at PM/ UHN followups , seems like decades ago ? And with carrying on with a birth of new family member happily married b4 that for numerous décades living my dream . I thought , until bitter sweet sepration turned nasty stealing that last born , making living so grevious torn apart in tears of many years not ceasing .

IDC became MBC no one flinched an eyelash . So with prognosis in hand I was told 2 years really ? Because I had the white coat syndrome I just felt every time we spoke he healed me we laughed , talked facts . He even empowered me but it was hard to listen bc out appt became shortened hurried after his sabbatical , his return and I had COVID .Both him another doctor who monitored my monthly hemoglobin noticed I could not breathe and talk . Lucky for them bc I am sometimes a Chatty Cathy . Let’s make this short bc it’s all about u & your time of living is precious .
It was about 15 months from ultrasound to surgery to scans with 2021 Treatment Plan . When is substitute Onco said I was NED no evidence of disease . When ever some one spoke to I said that was my goal . And so it happened ! Yippee you who ! That was hard to believe so I ran with it . Until my own Onco could comfirm this ! Which he did as my GPO here said too your in remission . I ould see how pleased he was too , yep clinical remission . But I still had to take the anti cancer meds with side effects to look forward to and monthly lows of wbc more hemoglobin being monitored . I don’t resent it but grateful . A boulder had been lifted off me free of cancer .
So when u get forlorn or sad faced with your prognosis . Just ride my wings or settled covered protected by them . I will be glad to cover you . There is a beautiful image of this with a verse .Don’t get bogged down but make the best of your time even if it doing little .
Relax and dance in the rain with a bar of soap having natures shower in summer with bathing suit on . It’s the most fun thing to do on your drive way or back lawn . A summer pouring rain shower . Rest is on My blah blah blog .if bored or want to share a message with me having a rough day here on CC .
You can start here . But if u want something resourceful ask @supersu who may know another site to keep photos and memes private . Like having your own photo album but on line out of public viewing . Sending rest pacing yourself and strength to not l er do it . .All I ask is what is a wish or something u have wanted or needed or thought about often ? Hugs 🤗

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