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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

  • Sorry to say it Midway, Registered General Nurses are all trained to the same level before they choose to specialise in anything specific like operating theatre, ENT cancer care etc. All nurses are generally conversant with anatomy and physiology, signs and symptoms etc, etc, but most of all they should all have some sympathy with anybody in pain and distress whatever its caused by, if they cannot be bothered, and treat someone as if they are a nuisance then they should not be a nurse in the first place! an RGN for 40yrs. cougar69

  • Dear Tanya

    I know it is not that simple but part of me thinks that you have escaped the hospice means you should crack open the champagne.If you are hungry perhaps add some strawberriies drizzled with honey.I hope you will still let us know how you are doing.

  • It was rather a guess, otherwise this looks right what you said

    about such nurses in the end.

  • Dear Tanya,

    No, no, no.  Your lesson for today is hurt then recover yourself then write.

    Correct me if I'm wrong, but has this not been what you've always done?

    Tragically, people have been negligent, but however you look at it, you're in the same physical place.

    Since I've seen you on your journey, I've seen your ability to rise above the negativity thrown your way.  Do that now, Tanya!

    I've been proud of you and that ability you have to draw your readers to you.

    Try and write through your depression and regret.  You may always feel  down but hopefully you won't be alone with it.

    Kathy

  • hi i now whot u going throu i am the same. got told in june but dont no how long i have. i feel like i am on my owen.you r young i am 60.it is my 3rd time. u have two keep going i now it is hard. as i am trying two do the same.my hubby and son keep saying i am not going two dye. but we all hierd the docter say they can not do any thing for me . so i now how u r feeling. on days i feel the same. it as come now that i whont it all over with. but u keep going for ur family.hope two hair from u . you r not on ur owen. i am here.

  • Dear Tanya,

    I may have seemed dismissive of your situation, but I'm not.

    I have a picture of you in my mind, at home alone.  Worse though is the thought that you believe your worth is that put on you by others.

    Someone suggested you feel glad that you're away from the sounds and smells of the hospice.  I'm not so sure though.....

    Over here, hospices aren't only about dying;  I'm sure it's the  same with you.  Therefore you shouldn't be surprised you're home.

    Kathy

  • Hi hunny ,read ure posts and think ure such an amazing and strong woman .hope u r doing ok as uve not written for a few days ..just wanted to let u know i was thinking of u ...god bless xxxx

  • Dear Tanya

    I havent got anything useful to say i just throught i would post you a hug.I hope that your road will rise before you as you have had a long old journey.I hope you will let us know how the land lies in your neck of the woods.

  • Thank you for the wonderful thoughts & big hugs, I felt them from afar....

    Unfortunately, I was admitted Saturday to the hospital for 5 days without food or drink; Acute Pancreatitis.  I'm glad to see your diligence of knowledge midway but sometimes we all are human & can be wrong.  Thank you cougar for your input.  The thought never crossed my mind Kathy that you would ever disregard me : )

    While I was in the hospital, I was so moved by the care I received.  I told everyone my story, all having the same look of confusion as to why Hospice would discharge me.  Upon having diagnostics done, I found that the cancer has indeed spread; it was no great suprise yet it felt as though I heard the news for the very first time.  The monster has began to reside on my kidneys, adrenalin glands & on the underside of my stomach.  "Basically Tanya, your entire abdomen is full of cancer."  The Dr. said compassionately.  Thankfully my wonderful Dr. did not say, "you are terminal." 

    Although I shouldn't even be alive being riddled with cancer to such a large degree, I am STILL alive..... A medical Misfit if you will.  I knew this all happened for a reason.  It was very difficult not being able to eat, drink or even have ice chips for 3 days, but I did it & am currently on a, what I like to call, a "mushy" diet, just for another week or so.  I have signed on with a new Hospice now.  I was on the former Hospice for 19 months & not one time did I ever see the Hospice Physician.  The evening I was released from the hospital, the new company came to my home, WITH a Physician....How grand.  I feel now, that I am in good hands, no longer being forced in my casket any sooner than God would want.

    I have learned much through my journey & am thankful for the tribulations I was faced with (hindsight).  I would like to tell you what happened on the 2nd day I was in the hospital.  I decided to rise up from my bed & sit on the couch near a window.  Having just received another large dose of morphine, I was, for the 1st time in months, comfortable, able to see outside my pain & watch the snow fall ever so slowly.  Peace I felt as I indulged.  Not long after, my RN for that day came into my room to inform me I had a visitor.  I asked who it was.  I couldn't beleive my ears & began to feel very very sick.  It was my old Hospice nurse.  She drove 2 hours to get me to sign the "discharge" paperwork!!  I KNEW she wasn't doing this for my benefit whatsoever.  I told my nurse that I would like the hospital social worker to be involved.  Not long after that, the ex-nurse left.  I was unsure of what I was signing, I didn't want to see anymore reprocussions on myself.  It had said that because I entered the hospital instead of calling Hospice that I had disregarded that contract.  They disregarded me on Friday!  Soon after, the social worker came for a visit & told me that I do not have to sign that paperwork.  I relaxed.

    Every Dr. I had seen while at the hospital was apalled the Hospice people did not see this condition as life threatening & seek a physician's care.  Although I am thinner, weaker & flat out exhausted from this, I know I will be eating regular foods soon enough..... What a wonderful milestone to look forward to!

  • Dear Tanya

    I am so pleased you are in one peice and getting the care you deserve.If you managed so well with rubbish care think how well you will do with competant medical staff.I hope your dreams are filled with wonderful food and that soon you can have it in real life.I love to cook .Each meal you eat is proof that you want to be here.I am tempted to write out an imaginary feast,after all we are all at this party.I will bring pearls dropped in brandy,champagne with a dash of violet syrup,truffled swan,wild strawberries , chocolate truffles and freshly baked bread.