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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

  • I just read your post...my dad's name is Ali...i dont know how you can manage to do all this...life sometimes gets so hard...hope u can be strong...my heart pains for you and your young family

    xxxxx

  • Dear Kathy,

    Thank you for your kind words, we are trying to live everyday as if it was our last. I read your profile and your friend Joanna must have been an important part in your life and am sorry that you may have an empty space. If everyday you think of her it shows how important and not forgotten.

    Be strong and she must have been very lucky to have a friend like you.

    Frances

    X

  • Dear Zendegi,

    My husband first name and last name is Ali, he tell me it means the Gate Keeper, he has promised that he will meet me by the gates, Thanks for reading my post and your profile dosent say too much about you, but thank you for your thoughts.

    Keep in touch

    Frances

    X

  • Hello everyone,

    I have not checked in in a while & thought I would give you all updates. Also, I am very happy to see others joining this discussion; unfortunately, cancer is like a plague in our recent times. I have learned of a woman named Henrietta Lacks- most of you may have never heard of her, yet are familiar with the HELA cells; named for her. She was the 1st woman to have cervical cancer; the doctors were able to harvest these cells from her back in early 1900's-forgive my not knowing the exact year- her cells have "been in circulation" meaning being used for vaccines etc. her harvested cancer cells were the only ones that would infinitely grow....And everyone wonders why there has been a "spike" in cancer diagnosis'!*

    When my Father passed of cancer when I was only 24, my little brother was only 8 years old, it was hard to see the fright in his eyes when the funeral came. I did the very best I could to tell him about our Father's death, I could never forget my childhood and the feelings I had felt when I was also that age. He later thanked me for shedding some light on "Dad's death". I told him that this life is just a vapour, what lies beyond here is something more than anyone could ever imagine. Now he is 23 with a set of 2 year old twins of his own. When I was 1st diagnosed in June, I sat him down once again to talk to him, He told me that he has forgotten our Father's voice, mannerisms, facial features etc. it made him sad that he would never hold dear to him what I held dear to me. I decided to make cassette tapes for everyone-they will always have my voice-*

    Although most people who are given that "expiration date", get angry, depressed, unsociable, curl up into a ball and "wait", I think most are overlooking the beauty of knowing. For me personally, I could have done that very same thing, granted, I have had the less lack luster moments in my journey, I have taken the rest of my life by the horns. Yes, I am dying alone, but doing the very best that I can to live like I am living, not live like I am dying. *

    It has been 9 months-funny how you count down life's little tragedies-since my 6 months to a year diagnosis, I don't fear it, I have felt for many years now that I have done all that I could do in THIS life, however, God allows me to wake up, I am not yet done here. *

    Hospice has its ups and downs, but if you have a loved one dying from cancer, please, please understand that cancer can be very painful, I am still going to die at home, comfortably. This group originally formed in London as "Care for the Ill", they can get their hands on thee best pain medication to keep him/her comfortable, despite their shoving "death" down my throat. Don't let your significant other be in pain.*

    With all due respect, I feel for the families that have children, young children they must somehow get them to try an understand that "Mommy or Daddy won't be here much longer." As I have said before, I do not have children of my own nor married. There has been alot of people on my television coming down with this demon disease, younger and younger, it's horrible to say the least. As most of you know, I am still dreaming, without that I have nothing, I have the dream of visiting Ireland as too, most of you already know, but in societies eyes, I am expendable because I chose NOT to have children; why are my dreams "less" because I have no children? Am I not equal to those who have children? I think every persons' dream is important, yet, I see (locally) a young man a little younger than I, dying from cancer, he is asking for $20,000 to fulfil his last wishes-not publicly known-and he is receiving it because he has children, again, are my dreams less than his? Am I less of a person because of my choice not have children? This entry by ANY means is not to offend or upset anyone, I write with honesty on here & always will, my feelings, my journey. It has taken me 9 months to raise just over half of what I need to go on what could be my final trip, friends -before they walked away from me- held benefits on my behalf -God bless their bleeding hearts- Yet this young man with children has tripled what people have raised for me in less than a month....Expendable?..... Perhaps..... At any rate, I will NOT give up my dream, if I have to crawwwwwl to the airport to finally get there, know my feisty personality will get me there!*

    For all of those that are taking the time out of their lives to write on this discussion board, know that I pray for each of you, for peace, for a miracle, for greater understanding. God doesn't close a door without opening a window...... I can feel the breeze starting to come in my bedroom window... Can you?*

    Terminal

    *

  • Hi Terminal,

    I am so pleased you have posted again. No you are not less of a peson because you do not have children. I think some people just manage to use the media to get the things they want/need. I am not having a go at this fella but it is something that you either feel comfortable with or not. Maybe its down to pride. I do not know and I am not even sure if its right or wrong. I guess it all depends on the person and the circumstances. I know there are a lot of charities out there that do offer help for holidays and treats etc but again I think it is for children who are terminally ill and their families.

    Maybe there is a charity out there for adults who are terminally ill but I am afraid I do not know of one. I do so hope you get to go and realise your dream. Keep us posted.

    My thoughts and prayers are with you.

    Bubbles.xx

  • Dear Terminal,

    I cannot agree with u, when I take my husband for his chemo the young people who are also having infusions is terrifying, it breaks my heart to see what they and their families are going through.

    I truly beleive that wasteful money on the NHS is being used for people who have gastric bands and cosmetic surgery where this money should be used for Cancer Research. I only pray for this horrible disease to go away.

    Take care and keep in touch.

    Frances

  • Dearest Terminal,

    I am sorry I have not been on here to join the circle - I have been out of ciculation for a bit.

    I am back now although it looks like all the usual faces have it covered There are a great bunch on here and whilst you are gaining support your posts and those in support are hopefully helping others.

    I will spend time over the next couple of days reading through the many pages to get up to speed.

    Please continue to post and let us know your happy days too so we can try and propogate those more.

    Kindest Regards

    Tony xx

  • +I remember all too well going to my chemo therapy treatments; I was the youngest one there and worst of all, everyone told me "you're far too young to have breast cancer." and "you're far too young to be HERE." which of course made me feel like a dandelion amongst roses. I am very happy that road is finished, being poisoned, at least I can say I tried :). Unfortunately cancer has power; it can and will if you allow it, make you unhappy and angry, I do believe nothing has the power to make you feel bad, its a choice, that being said, I get a bit rusty in that area myself We are all human, but it is true that reacting to anything, is a choice. I chose, with my "The End" not to allow cancer to have that power over me, I can not control what it does to the people around me, but I can within myself. +*I would report "good days" if I actually had them, so sorry I am unable to. My good things that make me smile would seem unworthy to most, trivial happiness. Being in these circumstances, you truly "learn" to appreciate the little things in life, although meaningless to most. I believe that this gives me the opportunity to show others around me (local and abroad) to stop and smell the flowers. Yes an old adage, however, at this very moment I paused, I am actually sitting up today, on my desktop computer, watching the sun smile at me through my window, something I haven't seen out here in quite a spell, I see it, feel the bit of heat from it on my face and.... I smile. That is a happy moment for me, those are the types of happy moments for me, I can write them here but I don't want to be mundane or repetitive (I try to keep chemo brain in check) **There is a charity place for adults, The Dream Foundation, which I had went through to meet the Celtic Thunder guys but they only grant one wish, they do not grant any that deals with overseas. I think that everyone whether sick or healthy (bless your hearts) should have dreams (plural), not goals but dreams, no matter how far out there they may seem. It feeds my soul knowing that there is a very real possibility of making this come true. I do believe it comes to pride indeed. When my "old" friends held benefits for me they did ask if I wanted media involved, I said no.... Pride.... I was recently asked to be in a video about my dream to be posted on a "networking" site for many to see, again I opted out. With this being said, through my 1st and second journey with this disease, I see so many commercials year after year after year raising money for breast cancer, to find that cure, so where is all that money going? It sure did not go to me when I needed a wig to feel like a woman again, it sure wasn't there for me when I needed anti-nausea medication ($300 a pill), and when I ask the cancer doctor "How close are we to a cure?" he said nothing, looked at me like I was nuts, as though he hadn't heard of these "commercials" year after year of "raising money to find a cure".... *

    I am leaving a poem I had written when I was younger. I am not sure where in my life I was but here it is:

    *'Mirrors' *

    Mirrors inside of me glide against me,

    Morning after morning playing a different tune,

    Shone my inhibitions, my loses, my debts,

    underlining a platinum blade in ruin--

    Pulsating thoughts, interrupted guesses,

    Open swollen memories of past,

    Closed memories of the present,

    Staining my piece of glass--

    Shall it always remain,

    Bringing light and image to one,

    Forming into a beautiful sight,

    From what the past has done?--

    Bringing moments once of cherish,

    Bonding mirrors inside of me,

    Pulling these intense images together,

    Things once gone brought back to be----

    Will post soon; hugs to all of you!

    Termina

  • Hey Terminal, any chance you can let me know your first name?

    Thanks for the glimmers - They may not be happy days but the 'Good things that make you smile' are a start. I suppose that sometimetimes Happy Moments are all that we have. They are only trivial moments to those that do not stop and smell the roses. I absolutely agree with that sentiment as we focus too hard on the destination and not enough on the journey!

    I must admit I visualised you sitting there at your desktop with the sun smiling at you and you smiling back and that made me smile also.

    You are so right it would be nice to get a progress check of where they are and how research is progressing....surely that would be a powerful fund raising tool to show progress and potential.

    I pray and hope for you to find more 'good things that make you smile'

    Look forward to your next post and remember you are not alone...

    Tony xx

  • I really feel for you.

    My husband Kevin died a year ago today in a hospice.

    My son and I spent the week in the hospice with him. Even though we were there I feel he felt very isolated at times.

    The hospice that my husband died in was wonderful so supportive.

    Of course there are other people out there dying of cancer, there are many who write up information on this website.

    Your hospice should be able to offer you counselling for how you feel, please take this up at least you will feel that someone is listening to you.

    When someone you love or like is dying it is very hard to come to terms with the situation you don't know what to say or do you feel so helpless perhaps thats how your friends feel. Could you contact them and tell them you really need them to be there for you.

    If you need to chat I can respond on this site to you.

    June