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Kay
@irvkay312

Posts: 172
Joined: Jan 26, 2012

At what point do I bring Hospice into the picture?

Posted by @irvkay312, May 19, 2016

@colleenyoung As you know through my posts, I’ve had epilepsy, migraines, in 2009 Islet Cell cancer, chemo and radiation. To maintain my neurological stability I seek to understand the matter confronting me and then “continue to live my life as fully within my means as possible each day.” Now, Monday, I’ll meet with my Oncologist and team along with Palliative Care group; my question is “at what point do I bring Hospice into the picture?” Since, I’ll have the latest CBC and tumor marker levels, in conjuction with the transition of a new anti seizure medication and depletion of another. Thank you, Kay Kramer

REPLY

@colleenyoung Thank you Colleen for the information and clarity of the matter I spoke of. I don’t mind sharing, since others may learn from various instances or events. For me, I’m not looking to jump into Hospice; but “to be emotionally prepared to face the matter, should it come to pass–rather than having it hit, stun, raise anxiety, etc., thereby maintaining my neurological control.”

irvkay312

Such a critical question. You are not alone in asking it. I like how clearly this article spells out the answer https://www.agingcare.com/Articles/When-Is-It-Time-To-Contact-Hospice-110692.htm

Naturally, this is a great question to bring up early in the conversation with your oncologist and palliative care team. In my personal opinion, I would recommend contacting your hospice service and find out more about their specific requirements. The comment we here too often is “I wish I had find out about this sooner.”

Will you have a family member or friend accompanying you to your appointment on Monday?

I wish you all the best with your appointment with the oncologist and palliative care team today Kay.

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@colleenyoung

I wish you all the best with your appointment with the oncologist and palliative care team today Kay.

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Thank you Colleen for both posts. As you noted, today with a little weight loss, slight drop in Chromagranin A; large drop in glucose and some of the occasional pains and levels above 5–my Oncologist and team first looked to or about any local family. After his exam and feeling “what he said seemed like a lump or inflammation of the liver, he pointed out treatments. as well as having a Hospice meeting. He wants me back in 2 months for blood work and exam, along with decision if it is time.

Kay

My concern has been and will continue to be “to maintain my seizure and migraine headache control for as long as possible.

Sending you a virtual hug Kay.

@colleenyoung

Sending you a virtual hug Kay.

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Thank you for your concern and guidance.

My appointment pointed out answers to which I asked the doctor and his team.
First, I wrote my questions down so I wouldn’t forget them, or get confused
during their conversation. Second, I asked the differences between my last
blod panel and the present one. Third, I asked “on what basis doe he as
an Oncologist diagnose Hospice for his patients.” Fourth. What is his
present prognosis?

When the doctor inquired about family (which I have no local) and after his
exam when he felt an irregularity in my liver–next from him came “return in
two months–not three as normal and I suggest you have a Hospice meeting.”

To me it pointed out that Hospice might be ahead and look into it carefully
before making a decision. For me, facing neurological problems all my life,
self initiative, doing, etc. has lessened depression and given me continued
hope. The meeting will undoubtedly clarify what will and will not take
place.

Kay

So wise of you Kay to have written your questions down and the questions that you asked. @caretothepeople is often linking members with resources to help them prepare for appointments and the questions to ask. I think she would agree wholeheartedly with your approach. It also sounds like you got honest and direct answers to your questions. I can’t say enough good about hospice. You may be interested in exploring this Virtual Hospice’s website http://virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx While it is a Canadian website they offer a wide range of articles, resources and Asked and Answered questions. (Full disclosure – I used to work there, so if you need any help finding something let me know.)

I’m very grateful that you are sharing your experience here. It will help many people who may be too hesitant to discuss. Please let me know how the hospice call and/or appointment goes.

@colleenyoung

So wise of you Kay to have written your questions down and the questions that you asked. @caretothepeople is often linking members with resources to help them prepare for appointments and the questions to ask. I think she would agree wholeheartedly with your approach. It also sounds like you got honest and direct answers to your questions. I can’t say enough good about hospice. You may be interested in exploring this Virtual Hospice’s website http://virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx While it is a Canadian website they offer a wide range of articles, resources and Asked and Answered questions. (Full disclosure – I used to work there, so if you need any help finding something let me know.)

I’m very grateful that you are sharing your experience here. It will help many people who may be too hesitant to discuss. Please let me know how the hospice call and/or appointment goes.

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Thank you again Colleen for your guidance. I am following, or have set in place a number of
items that will increase my awareness as to what the future may hold. Frankly, I am also
fortunate to have no fear or emotional upset over Hospice and have emailed all my doctors
to keep them informed until a decision is made.

Kay

@irvkay312 I thought I’d check in to see how you are doing. I am glad to hear that you have Palliative care involved. You may also be working through many emotions during this time. Perhaps many ups and downs. I wrote about terminal cancer and grief on the Living with Cancer blog. You might find this information helpful. There are many people who have written in on the blog on this topic over the past few years since it was originally posted. Let me know if I can help at all. http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/terminal-cancer-diagnosis/bgp-20056361

@smness

@irvkay312 I thought I’d check in to see how you are doing. I am glad to hear that you have Palliative care involved. You may also be working through many emotions during this time. Perhaps many ups and downs. I wrote about terminal cancer and grief on the Living with Cancer blog. You might find this information helpful. There are many people who have written in on the blog on this topic over the past few years since it was originally posted. Let me know if I can help at all. http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/terminal-cancer-diagnosis/bgp-20056361

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Thank you for your concern on this matter. Being me and inquisitive about my health through epilepsy, migraines, emphysema and then cancer; I have followed your column since it began. Last Wenesday, I met with admissions nurse and staff from North Memorial Hospice and yesterday with my team nurse. Undoubtedly, the key to my ability to learn and understand how to live with my cancer since its 2009 diagnosis; radiation, chemo, etc. has been as my epileptologist said “my ability to understand and live through the stages of epilepsy I’ve had.” They helped prepare me for the cancer and items I’d be confronted with, while maintaining the utmost neurological stability.” If I lost that control, through my inability to change course when items got to a worry or fearful state–I’d likely lose my ability to face and live with these things emotionally.

I’ve met and learned from people far worse off than I was in my mid years of epilepsy, “on how to change course psychologically, so as to lessen stress, anxiety, depression, fear, etc. In fact, although Philosophy was my college major and Psychology was my minor after starting school during the last 6 weeks of the third grade, due to teachers concerns; “I have no fear of what the future days may hold, simply to control the pain.”

Disability elements of life face and confront us all in different ways and the more understanding we obtain, the less stress will be eveident in our live’s.”

Sincerely,

Kay Kramer

@smness

@irvkay312 I thought I’d check in to see how you are doing. I am glad to hear that you have Palliative care involved. You may also be working through many emotions during this time. Perhaps many ups and downs. I wrote about terminal cancer and grief on the Living with Cancer blog. You might find this information helpful. There are many people who have written in on the blog on this topic over the past few years since it was originally posted. Let me know if I can help at all. http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/terminal-cancer-diagnosis/bgp-20056361

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Thank you Sheryl for asking. I am presently adjusting to Hospice in a
learning way, as I told the nurse the other day. I believe that this is a
gift that living through my stages of epilepsy has provided me with–“the
ability to learn, understand and accept what the future days may hold. I
faced fear during my Grand Mal and Jacksonian years.”

Today, I have no fear, worry, or anxiety about what I may have to endure
cancer wise. They (Hospice) set me up with pain medications and directions
on their use after calling them.

I can feel the small physical changes taking place each day. I also have
begun not to face worry, but to face a little instability insofar as my
neurological medical control. I’ll fight those changes to the end in
maintaining my emotional stability; even though Islet Cell is a slower
growing cancer (as since 2009) “once it’s in your blood as it is mine
through the mestasation to the liver, it’s in your blood.”

Whatever will be will be and I’ll take one day at a time. With my keys of
“Faith, Hope and Perseverance.”

Kay

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