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Dying young & alone Why?

I was diagnosed with IDC (breast Cancer) in August of 2007, I went through the chemo, the bilateral mastcetomy, My whole circle of family and friends were a huge support to me going through this. We had lost my father in 1996 to a brain tumor, he was only 49. In June of 2009 my oncologist told me that I have Adenocarcinoma effecting the inferior mediastinal nodes, on the outside on my lungs, he labled me terminal, 6 months to a year, I am now in my 8th month, enrolled Hospice since July. I am only (just)) 38. I have no one to talk to that understands what this is like, my whole circle for whatever reason, perhaps the burden of my upcoming death, have walked away from me. I ask my Hospice nurse "isn't there other dying people out there that i can talk to? Other terminally ill people that will TRULY understand my thoughts, my feelings?" She said simply, "no" So I decided to look online for a terminal chat room, and this is what i found. I am afraid to die alone, afraid to die when my Hospice people are not here. I need others that understand the harsh realities of being terminally ill with a very agile mind because i am young. I never married nor had any children, out of choice, I wanted to pursue my carrer in the arts before i settled down. I was able to have a final wish come true through The Dream Foundation, which was way cewl :)... At any rate, I just don't understand why everyone has walked away from me, it is my belief that my circle of friends and family are tapping their fingers "waiting for that phone call", i feel like a bad secret that everyone put in the closet..... Why can't birds of a feather flock together?- Why do the dying have no one to relate to? I feel very alone in my journey as my symptoms remind me everyday that i am Terminal...

Alone,

Terminal

  • Hello Tanya,

    I have just found this site & spent a couple of days reading it all. It has really moved me.  I have had cervical cancer twice  & just finished treatment/chemo for colon cancer, after  caring for my husband who died  at home of  lung cancer (2 months after diagnoses)  I am a very positive , independent kinda of person.... no family.... but could not have done this without the support & love  of really wonderful friends..my heart goes out to you being so strong.... I am thinking of you & send you my love & best wishes,

    skyblue xxx

  • Thanks for the info.It sounds like you know a lot about herbs

  • I wake this morning wondering once again, if I am actually alive.... The house is quiet, I have no pain to remind me I walk amongst the living; then I move..... Yup, I'm still here.  What an odd existence.  While still allowing healing time for my pancreas, I began to wonder, who takes care of the funeral-feast?  I have been to many funerals & there is always food after the ceremony but I never wondered who was behind that belly filling tradition....

       The Hospice nurse kept calling on Tuesday to "see how I'm doing".  I didn't answer because my anger toward her would bring her to say, "You have the right to chose to accept or decline our services."  This has always been her sentence when I have a legitimate reason to be angry.  I knew she had the following day off & decided to call them at least to let someone know I'm not dead.  I voiced my opinion to the RN that answered the phone.  She stated that "we" have never had much experience with your condition (pancreatitis).  But not 2 sentences later when we were discussing what to eat, she said, "I remember when I had pancreatitis....."  I told her that both of my doctors had wondered why they hadn't sent me to the doctor sooner, told her that I have lost all trust in my regular rns' opinion.  She told me that I am shooting myself in the foot.....& doesn't life just work out that way???  Damned if you do, damned if you don't.....

      Since this pancreatitis I have been very good with eating fat free easy to digest foods, I must report though, I just can not seem to get full!  Its as though my shut-off-valve is broken.  I have never been a really good eater, even when I was small.  I think that maybe I have had gallbladder problems this entire time & since passing the stone, my body is getting back to "normal".  I still can not eat regular foods as I tested my healing process & paid dearly for it the following day.  Oh how I miss food.

       When I closed my eyes last night feeling starved, I began to think of all the foods I could possibly conjure up that I have always enjoyed..... Strawberry Crepe's drizzled with chocolate sauce; perfectly salted & flavored jumbo shrimp nested on a silver bowl filled with thee best cocktail sauce; fruits mingled with cheeses; cheesy scrambled eggs, bacon, a slab of ham, maybe a couple of pieces of my home made french toast; chili; fresh out of the oven bread slathered with real butter; grilled steak, medium please; a loaded baked potato; red skinned potato salad; chips & dip, miniature ham & cheese sandwhichs with a dollop of mustard; bite sized cream puffs; french vanilla cappuccino; lasagne; home made garlic bread; home made pea soup; chicken tetrazini; cinnamon rolls; after envisioning a kitchen full of delicious ready to eat foods layed out for me to chose, ultimately I did dream of food......

       I know the pancreas regulates the insulin & sugar levels in the blood & perhaps that's why I am so deserpately hungry as well.  The fact that 4 different nurses missed my symptoms still weighs heavy on my mind, I can not afford to lose anymore weight; they know it.  The common treatment for pancreatitis is hospitalization with an I.V., because of my "status", an IV is considered a life-saving measurement.  Sad indeed.

       Had I passed away from this incident, no one would be the wiser, the Dr. would have written "Breast Cancer" on my death certificate.  My Mother would have never known what I died from...... The nurse I had spoke to over the phone the other day had the audacity to say, "You had every right to call your own doctor."  My reply, "I had no idea there was anything THAT seriously wrong with me because I trusted the visiting RN!"  I certainly was not polite about that.  Can anyone blame me?

       Did I happen to mention what my regular nurse said to me on our last visit?  Forgive my repeditiveness if I have touched on this....."I have never met any of your family or friends, its your fault, you need to mend these relationships."  Wow, really???  You don't remember all the various things I have tried to pull my circle closer to me????  She says, "They are only human."  I say, "SO AM I."  As someone had mentioned on here I added, "I shouldn't have to beg for someone to care."

       I have been in contact with my Mother throughout all of this, she told me the other day that she had visited the local grocery store, one that I used to frequent; many people were asking after me,  I told her, "if they aren't in my life, they have no right to ask."  She didn't think I was wrong.  It brought my thoughts back to allllll the people that will attend my funeral; the tears they shed; for what???  None of them were THERE with me on this wicked road I walk.......

    Constantly Hungry

  • Dear Constantly Hungry,

    You've changed your name.  Is it Tanya for cancer only  and Constantly  Hungry for pancreatitis?

    A good idea if you've used different names to half the pains from both conditions.

    Otherwise I'm confused.

    The computer keyboard doesn't work, so everything I write seems contrived with an onscreen one.

    Besides that your emotions merit replies that aren't impeded by my inability to want to write without thinking.

    I'm going to use a different computer tomorrow.     

    I'll write then.

    Kathy

  • Same boat RE the cancer and the family.

    It sucks....Sorry

  • So:

    --- seems the pains indeed subsided - like was told by my

    sick intuition?

    --- again, what if the food madness is not pancreatite but smth like the general process

    has reversed, at least for now, and this is normal reaction so far the body is

    "skin&bones"?

    Why not think of the "impossible"...

    Besides, these nurses are trained on cancer not pancreatitis, so why should they

    find it.

  • Besides, pancreatitis is inflammation of pancreas, as far as

    I know.

    Sugar level is regulated by insulin produced by beta-cells

    and the problem has very different name...

  • Gallstone pancreatitis is my diagnosis; Oncologist said, "I wonder why Hospice did not send you in sooner" says that the nurses should have indeed "knew" something was not right especially with the many symptoms I had for 8 weeks.

    I will not be dealing with Hospice anymore.  I was discharged, over the phone, by a nurse. 

    I am unsure when I will be writing again

    Terminally Ill yet not dying quick enough for Hospice............

  • Well said midway could not have put it better my self,

    kind regards 

  • Pancreatite is not smth to show itself as constant hunger, this doesn't relate

    to insulin and sugar level.

    But if you want this to be pancreatitis, everything for the convinience

    of cancer patient.

    Besides, if this already for 8 weeks= 2 monthes, this invokes some

    considerations...