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Terminal Neuroendocrine carcinoma
PamG
7 Posts
This apparently is a very rare, aggressive type of cancer with no good treatment. I had surgery but that was not successful. I have 3 of 4 palliative chemotherapy sessions to see if the tumor can be halted or shrunk temporarily. I'm just looking to connect with others who are coping with terminal cancer.
12 Replies
Brighty
8700 Posts
PamG‍ I'm sorry you find yourself in this predicament. I want to connect you with one of my favorite fellows. WestCoastSailor‍ thank you in advance .
PamG

Ah gosh darn Miss Brighty‍ you say the nicest things. Yup I'm terminal. And for me that can be hard to handle. People get offended when you talk about dying. But that is all you are thinking about. Finding "cancer buddies" is important. We terminal patients can sit silently together and just know what you are thinking and what you are going through.

That blow to the "who we are." People say the darndest things "Get your affairs in order." or my personal favorite "Be positive." Damm it I'm dying. What is positive about that? That was a wonderful older lady in the Cancer Center waiting room this morning. She was in for her last appointment with her oncologist. Her secret? Be positive. Yeah well when my current medication stops working I'm done. End of the road. I will always be in treatment. I have a reprieve for now.

Actually I have found being here to be a huge help in handling the challenges that come up. We can be here with you. Not sure if we can help but fire away if you have questions.

I do want to make one suggestion. My local cancer center has a real life metastatic cancer group that I have been going to for a month now - so two meetings. What a blessing it is. If you can't do that I wonder if there might be a match in the Peer Match program that Canadian Cancer Society has. Registration is completed online at https://match.cancer.ca for a trained phone support person with a similar cancer and prognosis. Your cancer will be hard to match exactly but frankly as I'm discovering terminal is terminal...

Looking forward to hearing more about you and your questions.

Angus

a3a
94 Posts
Pam, so sorry to hear your news. Westcoast Sailor's recommendation that you find a support group is one I know my friend Pat found very helpful. She found she could talk about things there that she felt she couldn't share with her family. If you are in a more rural place, the suggestion for a peer is good. And of course, there are many here who will support you. Thinking of you today on Vancouver Island.
MCoaster
743 Posts
PamG‍ Hello and wondering how you are. I hope that you have been able to communicate with others who have the same cancer as you so that you can support each other but if not we are still here for you.
Warm wishes.
Margaret
Cynthia Mac
4209 Posts
DonnaB‍ , while death and dying isn’t something we generally want to talk about, it’s most definitely a fact of life. My mom (rest her soul) was very pragmatic about this, and we used to talk about it, so when the day came that we needed her power of attorney, I was able to find it in the time it took my Dad to put on his coat and hat.

I’m very willing to help you out - just message me. When my mom passed away 2 1/2 years ago, I had to revisit my own estate plans, so it’s still fresh.

I’m also going to tag Kims1961‍ for you - she has done some workshops about end-of-life planning and may have some wisdom to share.
Kims1961
2339 Posts
PamG‍ and DonnaB


PamG‍ I am so glad you have found this site and trust us with how you are doing. As the others have commented the journey of cancer can be wrought with stops/starts. WestCoastSailor‍ has some excellent advice and wisdom. Connecting with the groups here and even locally is a great idea.

Talking about difficult things like end of treatment, death, dying, even living -isn't always easy and often harder for those around us - like family/friends. DonnaB‍ - you are so right!! I found, once i was diagnosed with cancer, it was even harder to talk about death and dying. People would say - "You're not going to die" - " Stay positive"....I thought hmm...I"m not going to die? Well - 100% of us are - what do they know that i don't? ...lol...

I realized we can talk about our cancer, but talking about treatments not working, being terminal, palliative, death , dying - can be uncomfortable - but so important. Like you said DonnaB‍ - why can't we talk about dying? It doesn't mean we have given up on HOPE but rather, when i am able to talk about dying, I feel like i am living too. Part of life is that we will all die. We can live a good life and have a good death - this is possible.

There are some great resources online, TEDTalks, videos etc. If anyone is interested, just send me a message.

So glad this conversation was started. Thank you,

Kim
Kims1961

So to hijack the thread (cause the question I'm about to ask is not related to the title of the thread.) But how do you start those conversations? I have about fifteen examples of ways that don't work. But I tend to just be a bulldozer and plow on regardless. But there must be softer gentler ways. Do you have some leading questions from your experience of things that work?

Bucket lists seem to be one tool that I have found. But are there others?

Angus
Cynthia Mac
4209 Posts
It started so long ago that I’m not sure I remember how “the talk” began in my family, WestCoastSailor‍ , but I have a mind that it may have come about when I was newly married and needed to start to think about creating my own estate plan. This may sound like “passing the buck” a bit, but have you tried opening the conversation by talking about your kids’ mortality, so the focus doesn’t start out being about yours?

When I typed “the talk,” I wondered if the parents out there can draw from “that other talk” conversation to try and draw some pointers of broaching a tough topic?
Okay third time lucky. https://cancerconnection.ca/discussions/viewtopic/79/64727?post_id=313857#p313857

The thread about terminal and conversations carries on over there.

Angus
PamG

After hijacking your thread into a pretty dark place, I got to feeling a wee bit guilty. I was wandering around the forums as I do on a rainy West Coast morning and came across this thread and got to wondering how you are doing?

Angus
CMM
4 Posts

Hello PamG,

While I am not sure that my NETS are carcinomas, I have Stage 4 neuroendocrine cancer that is throughout my stomach area --pancreas, duodenum, onenum, liver, etc. I have chemotherapy every month for 14 days and am now on round 22. My cancer is terminal, but I don't know how long it will be before the end. My oncologist said he'd get to know me well “in the next couple of years.” That was in November 2019. I feel fine and have no symptoms – no diarrhea, flushing, etc. I do from time to time have crying jags, maybe hormonal, maybe just feeling sorry for myself. I hope you are feeling well for the time being, too.

Whitelilies
2656 Posts

@CMM

one more time!

@CMM Hello and welcome from AB ! I am sorry for your reason to find us…..but glad you did. Thank you for sharing, and opening up to us….and trusting us with where you are at, now.

Please allow me to ask @Lianne_Moderator , if she could share some connections here with you, as you asked to seek out others and connect.

We are all here to support you…..

Warmly,

Whitelilies

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