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Ginny_B's picture
Ginny_B
Posts: 543
Joined: Sep 2011

Mets, Rads, 5FU, PICC, all words that were never in my vocabulary until end of September. I don't like those words. Wish I never had to know what they meant.

ABC321's picture
ABC321
Posts: 52
Joined: Oct 2011

..perhaps with time the memory of those terms will fade, along with the pain and suffering, and we will be left with the wonderful memories of our loved ones at thier best, before EC!

chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

Ginny,
I am having a HORRIBLE morning alone, bu hey try these;

NED, clean, working, shrinking, localized, caregiver, hope, memories, appreciating my SON being here for THANKSGIVING.

I want ALL of us even us stage IVb hopeless cad can't/don't want to sleep; afraid of losing even MORE time or life. I am up. Ready to BE up yes it's 4am 4:30 now...

Want to be held so bad right now and told we will have time. Just need enough time. How much IS enough? I am so scared of running out too,.

But I digress. Positive. NED, Alive, able to breath, feel love. I have it to give still.

I want to give Michelle and hug she is asleep.

I'm SO grateful for my son and for Michelle. I love you all.

Eric

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Go give michelle that hug, right now!!!
And close your eyes, and feel a big hug coming your way from me.....
Happy Thanksgiving, enjoy your special time with your son and Michelle
love,
Chantal

chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

Chantal,
SO glad to see you posting to me. Thank you I needed that I don't want to wake her AGAIN but that hug, I will sit out here and wait and pray she wakes happy and can have a hug go both ways I take your hug willingly and needed. THANK YOU. How are you? What time do you wake and how do you deal with the early/everyone else is not present syndrome.

It IS SO cool that Bradley is HERE AND WE GET TO BE A FAMILY FOR THE WEEK!! It is my sunshine wake-up time I always got up at 5am I just hate feeling BAD for waking up early and NOT wanting to go back to bed. I am alive. I want to be that right now. That's hard to share as it can feel selfish and I know you can relate to that guilt?

I am so glad you sound so good. Anything I can do? All of my love and support to you.
I wait the daylight and the 'permission' it seems to bring to being up and having needs...

Eric

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Well Eric, I'm up so darn early, because I go to bed so early. I think that after work and then coming to my empty house, and wandering around like a lost puppy makes me just want to crawl into bed.... (but the joy of that is that I wake up way before I need to!)

Eric, you sound so very sad..... I know that Michelle may not always wake up 'happy', but she loves you so much. I can totally relate. Some days I almost felt like a robot, so worried about Lee's side effects, medication schedule, bowel schedule, how he was physically feeling, writing out my charts, and notes and calling doctors and scheduling appointments...... I think that I often forgot to give out those much needed hugs and comfort. (also forgot to TAKE my own much needed comfort, trust me, we need the hugs too, just sometimes forget to claim them)

I can totally relate to being a bit grumpy when being woken up several times in the night, but believe me, I may have been sleepy and grumpy, but there is no where in the world I'd have rather been.

chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

Chantal,
Well I went and I GAVE her that hug!!! She was asleep and seems ok, I HOPE. IT felt GREAT; reciprocal or not.

I DID wake up at 4:30-4:45 and RAN to the bath and then made that coffee. She got me my breakthrough, and a ativan, but now the 'real' pain of the tumor (my frying pan shaped pain area) and I am feeling helpless at 6am as I am UP (Built us a nice fire-its 55 here do that's a treat I hope for her to wake too)

Bradley our son, is here, don't know If you knew that? We are a FAMILY for the next week!! Anyway I feel special and I am excited and after 2-3 days of worry about backup, things are moving along nicely (KNOW you can relate to that one) and I am up. I am just up. but it's got to be time for the slow release for pain and I hate waking people up.

I am hurting again. I HATE EC!!!!!

Glad its the weekend. Wish sometimes someone could feel, ONLY for a moment, and a brief one I mean that for sure, to know, this hurts, it's real. It's so scary.

I hope you have a good weekend. Plans? We are going to see a friend we and our son haven't seen in YEARS now to get together! Sure hope it's fun.

I KNOW she WILL wake up and take care of me and always seems to realize the pain is REAL, I need the help/pills/hugs too. Like Tom Petty said, when it is not in my control, the waiting is the hardest part!

Has to be every 6 hours though so....
Thank you SO much for being there for ME in your time of more serious needs to me..

All of my love to you and you are one amazing person...
Eric

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

I am so glad that you gave her that hug. I'm sure that in her sleepy brain, she loved it.

Eric, trust me, us caregivers may not feel the physical pain that you are suffering, but we do feel it, in our hearts. Lee would be in so much pain and frustration that he would start crying sometimes. That just ripped my heart out, tore it to pieces and believe me, I FELT HIS PAIN, and I wish that I could have taken it away from him. I wish that I could have given him relief and done all the suffering for him. I hate EC, and everything it took away from me. I would watch him get jabbed by yet another needle, and wish I could take that from him. I wish I could take the internal bleeding, the anxiety, the procedures, the chemo, the weeks spent in hospital, the anger, sadness and excruciating pain that he was in for much of the last 10 months.

I suppose the pain is all mine now, and for that I am glad. I miss my husband, my coffee mate, my best friend and life partner, but I am so thankful that he is not suffering any more.

Anyways Eric, please know that I'm with you in spirit, wish I could hug you and Michelle

chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

Thank you

I am a crying mess now.
I have so much respect for your strength and time taken for me this morning, missing YOUR coffee mate. I feel selfish but thank you you really helped me relax and breathe.

I hope you find peace, smiles, and some good memories all weekend, YOU deserve them.

I know Lee is not suffering either, and that does help a little. I just never want to make it worse bringing up anything painful but we are real and honest here.

My love and respect is yours from me,

Eric

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megmacmd
Posts: 94
Joined: Jun 2011

Hi Sherri, Can hear your loneliness miss my husband best friend (wing man) wewere always up at 430am when he was home and my daa was my 5am buddy alwyays called and talked about the birds on the Albemoral Sound(NC) Foetunately I am still woring so every 3 day Im up at5am going to the hospital and coming home the next 24 hours. Always something happeneing or someone up in the hospital takes my mind off of my EC. So far pain is manageable with occasional vicodine cant take it while working so just pray I can make it through 24 hours on Advil. Doctor apt this morning to flush port and discuss scans and options. After 11 rounds of flofox things stabilized but left me exhausted and peripheral neuropathy of my feet and finger tips and always nauseous. Love to cook and eat but those days are long gone.Did have all 3 children oldest daughters husband father inlaw and brother and sisiter inn law great Thanksgiving hopefully not my last but we will see. Am still grappling with any more chemo Iwant quality of like and feel aas good as I can for as long as I can.Sounds kind of silly but having watched my mom dad and sister die of cancer IAM REALLY SCARED .I try not to overthink but EC is not your typical canc3er seems to be soo much trickier never know whats next.Hope you had a pleasant thanksgiving and can try to forge on.After 3 years its a little bit easier dont think of AJ(My husdand 24/7) but something comes up every day to make me think of all the good times we had Woudnt trade it for the worldThanks for listeneing Meg

chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

After such a sad morning, things improved and it's great to come back now an update the thread with everyone...

Meg,
Love your posts! They contain SO much info! I GET the scared part for sure! Boy do really never do know what is coming next. Whew. Liver quit this morning? Lungs spotting? Ribs? What a fun ride for us all stage IVs? I try to be positive. Ain't easy....

How you are STILL doing the chemo and putting up with the Neuropathy is beyond me. That one has about killed my sister in law. Can't believe Vicodin does anything for your pain...

I worry as they told us NO NO NO Advil, Motrin, ibuprofen, aspirins, NSAIDs in general as they thin your blood, make EC an easier bleed out situation, Just so you know.

I am sorry for the loss of your AJ but it is encouraging to hear tht it does get better, in time. I worry for Michelle.

Sherri,
You alwyas make me realize something I need to be thinking about and stay aware of....you hit it on the head think. Michelle HATES the sleep mess. Poor thing I don't blame her we used to be normal, go to bed at 1:30 or whenever and then SLEEP until morning. Not sleep for 1-2 hours ans start the coffee. That's just not normal and it's what I been doing and I like being up. I am Alive!! I want to b up and alive, and so I grab the fact I am up, even if it only HAS been 2 hours I feel rested (pain pills maybe?) and I am ready to have another day cause they are so damn number to me...

More soon gotta run suddenly....

Eric

megmacmd
Posts: 94
Joined: Jun 2011

Liver failure really sucks my mom and sister had that my sister also had fluid in her lungs freom mets but both managed to keep up the pretense until the end that it was not the end yet.Helped everyone around them but unfortunately as a doctor I know the bitter truth. Wish I could live in oblivion and not visualize all that is going on internally with all the organs. Try to stay in denial as long as possible works for meThat why I hate doctor apt they remind me of how serious this all is. Another glorious sunise driving over the bridge to work at Maryview hospital our pre thanksgiving baby boom has settled down for now sure to start up nearer to christmas Our little premies are all currently doing well thank GOD.Had a great Thanksgiving withe the children and my oldest daughters rescue greyhound who is always a source of amusement or disaster his head is counter height so much watch all food and drinks around him my little jack russell loves hauling around his huge bones and toys.Hope you are still getting to enjoy the beach we took the dogs down thanksgiving day Seamus the greyhound lopeing along andCC my jack russelll trying to keep up with her stumpy little legs.CC is going nuts because we have a squirrel nest in one of the pine trees just above the squirell feeder she can actually climb about 3 feet up a tree. My husband used to call them tree rats but they are a never ending source of amusement for CC although she has caught many moles bunnies even a muskrat and a baby racoon they avade her to her frustration.Well got to go to a delivery will be up as usaul at 5am if not earlier for a delivery Sunrises are beautiful on this side of the water as well lots of egrets and water fowl can do without the messy loud geese Hang in ther enjoy those pain meds and relief they bringIt took them a while to get my dads straight but were right on top of my mom and sister.Prayers for both you and Michelle unfortunaely the hardet part for her is yet to come. I really thought I would die when AJ died I still believe you can die of a brocken heart. But the children made me go on and I had a great grief couceling group I went to for about a year that helped tremendously They used a text Joiurney through gief or something like that but the best book was Widow to Widow helped a lot and walked me through the months and years As I said before dont really remember the first 6months and then you are very alone because the rest of the world seems to go on And I had to reinvent myself as not being a wife to AJ anymore or duaghter or sister caretaker .Keeping busy helps but the nights and especially those early morning are a killer listen to alot of my husband country music he soo adored (my dadtoo) My mom did opera and church hymns too much for me . Hope your journey goes as best as it can for the 2 of you Soo glad you got to be with your son,My son the youngest and i had a great Saturday just hanging together and remeniecing about the day we had all the family with us hi girlfriend has been in spain this semester so he has been a little lonely but his KA duties at the fraternity have kept him entertained The girls are busy with their careers and boyfriend and husband.My oldest has a horse farm and menagerie always some project going just like her dad did, He built a Plane(which I had in the garage when he died) wings folded up and could land on water He and my son Andrew enjoyed building that and the mustang cobra and kayak and granfather clock together in between hunting trips and spearfishing Hope you can get a good 4 hours or more of truely deep sleep.I would love to be able to sleep 8 hours and eat a good solid meal but can always dream Hi to Micheelle what a saint I have said before caretaking is truely the hardest job in the world and very frustrating too to stand by helpless at times But sounds like you have lots of memories to take her through and hope she will be comforted by them. People do say the strangest things I rember someone who was going through a divorce told I was llucky my husband died What was she thinking obviously she wasnt.Love your post and know you miss you am friend Lee.Chantal has been so great to keep posting SHe too was an awesome caretaker and hopefully time will heal her soul OH yeah thanks for the advice about the advil I have a hard time following doctors advice sometimes some things seem like a mote point since Im going to die sooner or later anywayIve made my advance directive and DNR status will find out end of december what the new scans show but for now I just live to work andget ANdrew through college and enjoy my walks and adventures with CC at the beach orSeashore stste park Oh yeah she cornered a graefruit sized ghost crab at the dunes and played for 20 minutes until he finally skittered down a hole The beach is soo cathartic am going to miss it when I go to live with my daughter,Currently off chemo 3 months and still thinking not resuming it for all the side effects it may only prolong the misery dont know still grappling with the choices children are fine with what I decide except my son who lost his dad at17 lifes hard lesson My husband always said we are all dieing the minute we are born and he lived life like that he could pack 48 hours into 24 never stopped lived 100years for his 52 Take care Meg

Mazj's picture
Mazj
Posts: 42
Joined: Oct 2011

Such an amazing privilege to 'eavesdrop' on all your conversations. The trust on this board is inspirational.

Marilyn

Ginny_B's picture
Ginny_B
Posts: 543
Joined: Sep 2011

I can't imagine how hard it must have been for you being a doctor and watching this disease work. I just can't imagine.

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

in my eyes I send you my love Eric, Michelle, Chantal... everybody else....names that are so new, yet so important.

This is all so very close..

Cora

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