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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

  • Thinking of you Tanya, as on the UK news they are reporting the  heatwave in the US so I guess you are still really uncomfortable, I just hope that you have found someway of keeping cool.

    Lots of love,

    skyblue xxxx

  • Dear Tanya,

    Hope you're not feeling too bad and that heat's bearable.

    Let us know how you're getting on when you can.

    Kathy

  • Dearest Tanya,

    Thinking of you especially this morning and wondering how you are doing and hope that you are feeling comfortable and peaceful. If you feel like it, do let all your friends out here know how things are as we all care about you and send you lots of love and gentle hugs. skyblue xxxxx

  • Hi T, I have started putting out flyers....I do hope things are as okay as they could be.

    Much Love

    T xxxx

  • Yes, this would be nice to see.

  • Dear Tanya,

    I've come back to your page, fully expecting to see a message from you, saying 'X' wins the prize for the most messages to you without an answer (it won't be me), but there aren't any messages from you.

    You'll have to write anyway, because I haven't got the guts to help Tony putting flyers out for you.

    I hope you don't feel too bad and that you'll be able to write soon.

    Kathy

  • .......What's this?.......As she walks up in the blazing muggy sunny day......A flyer; shall we read it?  By all means yes!  Oh my goodness, I say outloud.  These need to be removed immediately & I must find them all!!!!.............

       I'm still hanging in there, appetite is on & off.  It has been a bit hectic these days;learning new RN's that will be my "sub" when my regular nurse takes a few "I've gone crazy & I need time away from these crazy people" days off,  What a wonderful caring, loving RN that I have, I think I deserve a nurse that's not going to tell me, "I need to see you going downhill every two weeks or it makes ME look bad".................Geez I wonder if she was sneaking out in the middle of the night seceretly digging a hole to put me in!!

       Becuz I have not bounced back from my last (I'll spare you all the details) these episodes keep me straight in bed, unble to eat, only taking in the water I need to pound down 23 pills & those rarely stay down.  My RN, being her trained eyes to use, says, "Maybe we should talk about a Hospice Facility."  "Thank you but I would rather roll around in some poison ivy with a red ants hidden beneath & VERY,VERY hungry!!" Although she laughed hard when I said that, she still pushed for a "Facility".

       I cried, you know those tears, the tears that feel they won't just stop, thinking of puppy dogs & rainbow skies still kept me in the, "This is a regular nursing home, all the people that "live" there are at least 123 yrs old! I would have my own room without a "neighbor in bed 2". However, am I going to do what with these people exactly?  Play bingo?  Have the same meal times for the rest of my life?  Have the older dimentia people (God bless their heart) walk into my room, which has no lock, looking into my eyes & saying, perhaps hollering at me, "Where's my socks? Where are my SOCKS!" or someone walking into my room fishing through my clothing, getting undressed & taking a shower; only God knows but after seeing the pictures from my "possible" room that the RN had the main case manager of that facility bring, I wanted to RUN!  I am still propped up at this point, on my waterbed, with these creepy pictures in front of me thinking of my final option, an option I too thought would never cross my mind as a positive thing to do in my life......Send in the troups Hospice, its time to take the waterbed down & call in for that famous dead bed. I thought it would be best for my mental capability to lay on the couch & not watch the bed I have loved & known for 21 yrs of my life, disappear.  I wasn't sure how I would take it, much like when I removed my bandages from my bilateral surgery, will I freak out?  There will be no nipples or breasts, I HAD to keep my eyes open for this one or I could cut something without even knowing it! After I unwrapped the 100's of bandages, I finally reached the gauze, the part thats going to change my visual life for quite sometime.  I gently took the 2 pcs of gauze off saying, why am i being so gentle? These nerves are dead....much like my breasts......much like my waterbed......much like my lack of concern that people don't (still) bother with visiting, calling & all of the other ways there are to tell someone you love them; "I'm here & go ahead & ask all the questions you'd like to know & shed your tears in front of me, it shows me you care!  It shows when I'm dead but I won't get to see those tears so dont bother using them after I'm gone becuz I can't see them anymore! I loved you with my entire heart yet was too afraid to shed those tears for YOU, now the tears I shed are based on my own selfish feeling, feeling you could had shared with ME.......

       Sorry, I went on a rabbit trail there for a moment.......eh hem <---- I clear my throat to continue.  I heard the clunking & banging of one bed being moved out & the new one moving in.  The bed-man ushered me in so he could instruct me on hoe to use is.  I didn't cry!  I was in complete awe there were beds made like this!  The 1st word that came out of me mouth was, "Cool!" Guys & gals?  I got the Mercedes Benz of all beds!  It has the norm up, down, head up, feet up, it has its own computer system!!  Its hooked to the foot of the bed & I regulate how soft or firm I would like it then that computer starts doing its job....It maintains that setting that I chose.  Its an air mattress but there are baffles that run widthwise, they are not connected should one of them lose air, I have had only 3 beds my entire life, this being the 3rd, big change for someone whose only owned 2 beds.....Therefore, no tears, same as with my bilateral, I critiqed the doctors' surgical knowledge!! 

       I have had this bed since Tuesday & I wish I would have made "This choice" a long while ago but then I would have been with the evil Hospice instead of this Hospice.  She brings me these huge trays of fruit along with the fruit dip a couple of times a month,  She is my angel..........

    On that note, I'm still staying indoors until this terrible heatwave is over (probably not until November, eesh)

    Its time for me to get sum more rest & remember.......I'm not dying....... today  =)

    TT

  • There were not good feelings about the situation this week, but this morning it was like

    that it's not that bad, now it's nice to hear positive news.

    Asking the Immune Stars for the same.

  • Morny morny......thank u for ur update which i have read through many times.....lovin your discription of the Merc bed!

    I cant for one seconds begin to imagine what u feel inside, because i am not there. I have had breast lumps for years and gone through the rollercoaster rides of finding it right through to the conversations that say hey its ok we see you in 6 months go have fun!

    i am now at the point they have said actually although it is your choice to have preventative surgery, we can say this will happen by the law of family history averages!...time to change your game plan!

    i have so many questions running around my head and i sometime wonder how the hell i will trun my head off, and since i got the date to see my plastic & gyne surgeons i cannot sleep through the night.

    yout describe about pulling off the bandages and the gauze and then there are no nipples.....i have looked at pictures of others to try and understand what it is that i will look down on, and i struggle, all i can do is wait, i talked with a girlfriend last night and said i had tried out a tattoo idea on my wrist that i had desinged and she said well you could always draw something on them!!!....what two fruppin smiley faces????!

    thats a bit that i  struggle to understand. I spoke to one of my brothers last week and as he lives 12 drive away told him i really wanted to see him to talk to him......we texted to sort an evening out, and one of which i couldnt make so gave another option, then get one back ...sorry going out....text back ok let me know about another time.....nothing, i then read how they have had a great break seeing family and friends....oh and they were on there way back home hope to see everyone again real soon.....i felt completely dejected and forgotten about and thought cheers bruv, had the shoe been on the other foot, it would have been my priority to sort a visit, not a fruppin after thought....i get from ur threads that ur similar to me, if someone needed u that u would do waht u could to be there for u, and i am feeling that my family is dropping off as if i was dieing from breast cancer......im not im just having a couple of major ops to strt with to stop that happening! doh family!

    when my dad was told he had breast cancer i was with him took him to his hospital trips....it was too much for the others to do, then dad couldnt face telling them, i had to which i did for him, not really for them, it was something my dad couldnt talk to them about.....the same when my mooma was told, then i did her end of life care, i had an hours break one sunny day and said to them all, do not leave her alone as she is floating on morphine has her pump and thinks sometimes she can just get up and she will fall....yep yep yep i was told, while i was out i just couldnt settle, i had got for a blatt on my motorbike, so i truned around and headed straight back......i was sooooo fruppin angry when i pulled up and found them all outside sitting talking while she was on her own, i went srtaight in to find her callingout trying to get up......so i ignored them from there on in saying u need a break i will stay with her .. they had blown my trust!

    i was there with her when she passed and it was a honour to care for her she was my amazing mooma.

    I know if the shoe was on the other foot i would be there...but then thats just me!

    my partner who has been with me 4 years now into my lumpy boob journey has been my rock and is so miffed with my family, he never knew his sister she passed beofre he was born and passed of a tumour at 8 months old.....he says they have no idea who u are and how special...at least i am to someone!

    i hear your frustration in your words and that i can understand.....your a very special person....such a shame they are missing out on you!

    please keep us up to date how the Merc drives

    hope your day today is a sunnier one, and thank you for your blog, its helped me!

    Much Love Tiggs x

  • Dear Tanya,

    Fancy that.  I just read your post and I don't know if it makes you feel better or worse or indifferent, but you sound so different from the post you wrote before.  I can't explain it, but it's like you've emerged from something.

    I suppose I want you to say you have emerged from something (the 'episode', as you call it), and that you're not going back, but I should be happy enough with your words "I'm not going to die today."  Oh, dear.  You wrote that post the other day didn't you?  So maybe you'll have to check in daily (I can see you now, thinking, 'Daily? Kathy should think herself lucky for the days I do write').

    I'm glad the Big Man called the heat wave off.  He must have heard your pleas.  Will He understand your hesitance at 'blue rinses' and 'bingo' in a hospice facility.  I don't know, but I've got a feeling you're going to be writing for a long time.

    Love

    Kathy