I saw your post and am here in the states and wondering if we could talk over the phone. Please send me an email if you are willing to connect.

Melissa

jamn4god@hotmail.com

Hi Patrick, Good for you! So sorry about having to deal with the pain however. I had the same issue come about (although my pain management has been established) I was due for a patch change on Friday (patch change is every 3 days), I saw my RN on Tuesday, my oncologist had not signed the paperwork to fill my rx, so she did not have the most important drug in hand. She told ME to go pick it up (????) She said "we have alot of new people we have to set up so I won't have anyone available until Sunday."... Sunday! I did the same thing, I 'reminded' her that they work for me. Any other time they would have a nurse bring out the missing med later that evening, but because I am not a "new cancer patient" I am less important. I had mentioned to her about my trip to Ireland; that I was trying to get up the cash to go, she told me that they would have to "discharge me" from Hospice should I do that! I ask why, she said because you are 5000 miles away! At what point whether or not I make it to Ireland, are they responsible for me/what happens to me while I'm in Ireland? At this point in my life the only thing they are "responsible" for is my pain management. They don't have an in home care nurse for me as it is and I do not have that option unless 'it's close to that time". So they are going to essentially, punish me for having a dream! I can relate to these people being less than caring and it merely being a "job" to them (most of my staff are volunteers) but volunteer or not, you really have to have 'been there' to some extent to even do this work. They have me pegged at "typical", a couple of months ago I wasn't eating well, dropping weight, appetite was gone, when my RN visited, she told me, "well, your body is going to start to shut down now, your appetite will never return." She was wrong, I love not being typical On Easter Sunday I was able to feast with my Ex cheating boyfriends parents, they do not talk to him after what he did, I feasted indeed. I'm so sorry your Easter weekend.....-Sucked-.... But happy to hear you gave em H*l !! I Always have a stash just in case "I'm not important that week". *

Hugs,

Terminal

Hi Patrick- I hope Hospice is not making you "squeel" too much I do hope they find something that will work for you! For me, I had a huge tolerance to the opiates they were giving me, they had the audacity to ask me if I "Had abused drugs when I was younger"! Some ppl can not take it, some ppl have high tolerance too it & some are allergic; it would blow your hair back as to how much I actually take daily! Enough to put a horse down! For the record, NO, I was not a drug user back in the day

I will check back to see how it went, I hope to see a post on here from you soon

I have not been doing much since I last posted, the weather is breaking here again & reeking havoc on my hay fever, I don't have enough going on right? lol. My nurse visited yesterday, same ole same ole, my bp was so low (80/52) she told me I should get up and run around the house....I'll Be right on that. I did gain 2 lbs. though! When I started all of this, I was 164, now I'm 120, at 5'7 I could be a movie staaaaa ;). The one thing that is "nice" about being terminal, I can eat anything my heart desires! I also get the Dr,'s off my butt for smoking.....Fags? hee hee....Btw, Brokenman (I believe it was you that said it) forgive my chemo memory.... *** is not generally used out here anymore, most of our states have excepted the homosexual communities-some haven't- but most have... Maneater.... hee hee hee.

I think I will close my post, refill my coffee mug & go sit out on the swing, let the wind style my hair this morning.... Good thing I don't have close neighbors, I'm heading out in my pajamas!

Hugs to you all-Looking forward for that update Patrick Take Care-

Terminal Tanya (hey, now that has a ring to it eh?)

Hey TT,

You are right it has a ring to it

How are you feeling right now. I must say that you appear to be going through a good patch if that is possible. There appears to be a great sense of humour running through your last few posts and whilst the subject hasn't changed the posts dont seem as dark or maybe that is just me.

Not had any poetry lately although the phrase letting the wind style your hair seems somewhat poetic.

Stay cool!

T

Dear Tanya,

Hope you're feeling okay.

Tony's right. Your sense of humour has been more evident in your last few posts, and I'm glad to see it. I look forward to reading more of them.

Best wishes

Kathy

Tanya,

Not heard from you in a while - what is the weather like where you are?

Kindest Regards

T x

Hello all, sorry it has been a while since I've stepped in and wrote. The weather has been a bit cool for this time of year, I just feel lucky to have made it this far. I love to see my Cardinals come back, listening to the song birds_{pretty song they have} I have been trying to get used to this new "me". In the begining of my signing onto Hospice, I was against having a Hospice bed in here and then, last week, it just "hit me", I need to get one in here. I believe I am living on pure instincts at this point in my life. Going to be hard getting used to a bed that doesn't move and is cold unlike my waterbed, but its probably for the best. I recently found a new lump, it grew one inch in 2 weeks, the details of where its located is really not important, but it does give me a means of "monitoring" the cancer. I will never say MY cancer, I didn't invite it in, purchase it, win it or work for it.

Patrick- I do hope your well, I am assuming :Sutent" is much like chemo therapy here (?) The side effects I had from it were the very same evening I had my first treatment. Bless your heart for going 4 straight weeks with that poison, I was going in every 3 weeks for 6 months.

I'm tired as they have increased my morphine, it wasn't keeping up with the pain anymore. I am down to 115lbs. but maintaining. Lately I have been missing being close to someone, intimately or otherwise, most days i wish this road was over but now and then I can pick my head up, usually from a fond memory and smile a while, certainly not enough to make me hope this cancer will just disappear.......

Tanya.

Tanya,

It is strange to say 'it is good to hear from you' in such circumstances - I so wish it were different....is there anything else happening or are you now in that bed for the forseeable?

I miss your wicked humour and because you need a hug I am sending you one over the wire.... <<>>

Hope that does the trick.

Much Love and peace,

T x

I am so sorry for you and the way you feel. Your loved ones have walked away because their scared. They love you and can't bare seeing you die. There are blots of differences between us , including I was dropped instantly by my family, including my mother. In the beginning they all thought I would survive, they treated me like it was contaigous. My brest cancer turned into multiple myeloma, it's in my legs, my ribs and my skull. I'm amzed that I'm still here. I want to learn on here how to act in frint of my children, I have already went completely crazy in front of them They have a good fateh, Thank the Lord. My oldest is 19, then 18 and my baby will be 15 in August, they make it so ver hard to go. You are not alone my dear, The Lord loves you and will help you when you need him and even though I don't know you, I love you and you are in my thoughts and prayers. Here in America, it's one of the first things they ask "do you want to talk to survivors"? I didn't but there are people out there to talk to. I had to look for some where to talk to relieve the burden but not on my family. nThis is a rough site, I've cried through many stories but I'm learning how to deal with things and how to help my cxhildren be okay when it's over. God bless you dear heart and please realize, you are not alone!. Love Maria