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How to know we are near the end.

Nancylls
Posts: 3
Joined: Jun 2010

My Dad has lung cancer. He has been diagnosed three years ago and we are extremely blessed to still have him with us today. However, after this long battle of his and ours, he is slipping.. His looks are changing, he is tired and not eating well. I am confused. His eyes are so tiny. I have been looking through photos that we have taken over the last few months and noticed how his looks have changed. Does his eyes have anything to do with cancer? I expect his looks to change, but not his eyes. I guess what i am trying to figure out is where are we at? Have we reached the end? I can't handle losing my dad and i don't know how to prepare myself for this. All i know is everytime someone says to me, wow, he has changed since the last time i have seen him. I feel like it is the end. I am an emotional wreck. Can anyone let me know how i will know if it is the end? Some days he is so good, he has a wonderful sense of humor. Always joking. If it wasn't for that, i would have never made it this far. God, i love him... I just wish he wasn't being taken away from me.

cabbott
Posts: 1048
Joined: Aug 2006

Your father is very lucky to have you. I wish I could email a hug to comfort you because I can tell you are in pain. While doctors can give you stats on the "how much longer" question, even they can't give you exact predictions and sometimes their best estimation is wildly different than what actually ends up happening.

Hospice is an organization dedicated to taking care of those whose days are limited. After I lost my grandfather to prostrate cancer, some literature from hospice came across my desk at work. The pamphet explained what things a family would see when the end was near and how to make the patient more comfortable. I wish I had read that pamphlet before my grandfather died. It would have told me what to expect and what to do. It was hard to read because I didn't want to think of anyone dying, but it made some of the things I had seen make sense too, like the "not hungry" problem. You wouldn't believe all the times we fussed at my grandfather for not eating. He said he just wasn't hungry. We didn't understand and we nagged at him to eat anyhow. It didn't make things better for any of us.

Hospice can offer more than just literature. They can provide counseling, emotional support, pallitive care. They can come to a home or a hospital room. I hope you can find a hospice group near where you live.

Because I can't quite email a hug. . .

Nancylls
Posts: 3
Joined: Jun 2010

Thank you so much for your kind words. We actually did have hospice involved as the Oncologist said there was not much more they can do and it was time to call them in. That lasted about 2 months and although they are extremely special people, there was not much they could do at that time as my Dad was doing so well. Gaining weight, feeling good, blood pressure was always good. Then the day they took the oxygen tank out, (wich he never used) he was in the ambulance the very next day not breathing. Well this has all happened about a month ago, and now i am facing him having his esophogus stretched once again because it closes up on him and makes it hard for him to swallow.. He is convinced this has nothing to do with the Cancer just as he is convinced the pain in his feet and legs and his balance issue has nothing to do with it. He fell twice fathers day. My heart breaks more and more everytime i see him this way. But thank God he has a great personality. So i guess as usual through this whole sickness, it is a waiting game. Once i dont like to play at all.

All of your support has been a tremedous help to me. Thank you all and please pray for me.

KimberleyJo
Posts: 5
Joined: Jun 2010

Hello,
I am so sorry that you are going through this...I know how hard it is. I lost my Mom to lung cancer last December after she contracted pneumonia. She was in the hospital for 9 days, and deteriorated quickly during that time. She stopped eating (refused) 4 days prior to passing, and in those last few days she mainly slept, and fought for each tiny breath. I highly recommend discussing this with your doctors, but I'll share what happened to my Mom. Two days prior to her passing she started asking to see loved ones so that she could say goodbye, almost like she knew it was time. We of course allowed it, although we were really still in denial, but we're now very thankful that we had that time to express our love to her while she was still aware. The next day she had more energy, wanted to get out of bed, drank on her own, and make a few jokes. We really thought she was improving, but the doctors later told us that the body gets a 'jolt' of energy like that just prior to passing. The next day she slipped into what looked like a 'deep sleep' and she became unconscious. We continued talking to her, because the nurses told us that hearing is the last sense to go. We also played her favorite piano music, which we know was soothing to her. Her extremities became cold as her blood starting flowing into only her respiratory system, and only a few hours after that she took her last breath. We continued to pray over her, and to talk to her right until the very end. In retrospect, we are all thankful that we could help 'ease' her into the transition, and that we could be there with her. As difficult as it was at the time, I'm thankful we had the opportunity to be there for her. Losing a parent is the hardest thing I have ever been through, but I can also say that it does get a little easier with time. Cherish the time you have, and then cherish the memories. I hope this helps you!
God bless you!
Kimberley

Nancylls
Posts: 3
Joined: Jun 2010

Oh Kimberly,
I don't know where to begin. I guess by wiping away my tears might help so i can see what i am typing. I am truly deeply sorry for your loss. I too have lost my biological Dad and was by his side up until his last breath. I honestly don't think i can handle doing it again, although i know the day will be coming. Nothing in the world can prepare you for this even though you know it is going to happen. Your family sounds like they are very close, you are very lucky. My family is also extremely close and i could not get through this without them. They are my best friends and only friends in the world. My Dad (step dad) has always treated me as if i was his own, the word step means nothing to us. He has raised me and he is the bravest and strongest man in my life. I am not a strong person and do not accept death very well. But coming on here and reading things people have to say definately makes me realize i am not alone. I may feel it and i do, but there are so many others dealing with the same issues. Then on top of all this, i just found out someone that is close to our family has just been diagnosed with stage 3 lung cancer. If i had only one wish, it would be to cure this God awful disease.
Thank you for your story and your concern.

KWeiser's picture
KWeiser
Posts: 16
Joined: Jul 2010

I am 31 and was diagnosed with adenocarcinoma of unknown primary in October 2009. In addition, I am, or was, a hospice social worker. My mother had a stroke in 2005 and was in a hospice facility for 2 weeks before passing - this was before I became a hospice social worker. To your questions, the doctor should tell you when it's time to call in hospice. Also, if your dad is not longer seeking aggressive treatment, and the doctor thinks he has less than 6 months to live, you can use hospice even if he lives for longer than 6 months. Hospice will bring your meds to your home, provide you with nursing care, a doctors care (SOME hospice doctors do house calls), a nurse's aide, chaplain, social worker, bereavement counselor, and other services. You have the option to utilize all that hospice offers or only some of the services. I know what it's like to lose a parent. Looking back, I wish my mother had passed at home instead of inpatient hospice, but she was really more appropriate for inpatient care. Please know I will be thinking and praying for you guys. You can email me directly at kmcantrell55@gmail.com if you wish. Please visit my Caring Bridge website for encouragement, inspiration, and kind words that people have written to me as well as commentaries from myself. That address is caringbridge.org/visit/kellycantrellweiser
If the time comes to call hospice, as around and find out which agency is the best, don't just take the doctors word for it. The right agency will treat your father and family with respect and will really help you during this time.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Hello KWeiser,

I am just noting that that is six posts you've made now, and in all six you made certain to post your email and your website. I'm not sure whether to report this as spam or not, because you seem to be helpful, but you also seem to be anxious to pull in visitors to your website. In any case, you should only send your email through private messages. Thanks, and be well,

stayingcalm

KWeiser's picture
KWeiser
Posts: 16
Joined: Jul 2010

Caring Bridge is not actually my website. Caring Bridge is a website where, to quote, "Connecting Family and Friends When Health Matters Most" and "CaringBridge is a 501(c)(3) nonprofit providing free websites that connect family and friends during a serious health event, care and recovery.

A CaringBridge website is personal, private and available 24/7. It helps ease the burden of keeping family and friends informed. The websites are easy to create and use. Authors add health updates and photos to share their story while visitors leave messages of love and support in the guestbook."

I invited others to visit my posts at Caring Bridge because that's much easier than trying to post pictures, stories, poems, etc. on this website as well. It's a great resource for coping with cancer and no one has seemed to mention it in my research on this site. In addition, my caring bridge stuff has a lot of talk about Christianity and God, which some people are not interested in.

I know it may be "risky" to post my email address but I have bigger stuff to worry about than that. Is there a rule to posting my email and is there a way through this website to post "private messages" to individuals, if so, that is what I would prefer to do.
Thanks for your concern and take care.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

If you look at the center section where you first log in, you'll see "CSN email" - that's where you go to send private messages.
When you include your website address in every post, well, it does look like spam. Are you new to the web? ;)
stayingcalm

KWeiser's picture
KWeiser
Posts: 16
Joined: Jul 2010

I guess I was naive, assuming that people on this discussion would try and facilitate a welcoming, caring community for cancer survivors. It never crossed my mind that posting the caring bridge link or my email would be seen as spam. Just a little type into google would show you that caring bridge is a reputable website. No, not new to the web - my computer is set so that accessing any recommendations such as the ones I made would warn me if something was amiss.
For a first timer, I was truly upset by your attitude towards me, not very welcoming for someone struggling with cancer looking for a place to connect. Not a very good first impression for the site or you. I will maintain my Christian attitude and pray that your attitude towards others might improve. For the future, please do not comment on any of my posts.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

you think I have a bad attitude toward you, I think anyone here will assure you that's not the case. Caring bridge can be the most reputable place on the web, but repeatedly posting your website smacks of advertisement. There is a place to do this - your user account page has a section to post "resources", post pictures, etc. Again, sorry if you misunderstood.
stayingcalm

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

KWeiser - Stayingcalm is one of the most compassionate people I have had the pleasure of meeting on this site and she was not trying to be rude when mentioning spam. I almost flagged your posts also as you posted the same message 7 times in one day, it got me suspicious since we have had several cases of very obvious spam lately.

It is not against CSN policy to post your e-mail address but it is discouraged by CSN - because this is a public forum and you and anyone in your e-mail address book are susceptible to spam (and possibly a virus) if the "wrong" person gets your address.

It's unfortunate that with all we are going through that we have to worry about spammers but we do. Again, please don't take Stayingcalm's reply to you as unwelcoming, she was just looking out for all of us, which is her nature, and we all appreciate her concern.

My best to you,
Glenna

congoody
Posts: 74
Joined: Jan 2010

I would defend StayingCalm and Glenna and admit that I too was about to flag you when I read that you were being taken to task by one of our most kind and supportive members - your sanctimonious, holier than thou response is at best what I expected - you can share your feelings about your own illness (which you have yet to do) but keep your ads out of the network please.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Dear congoody,
Thank you so much for the support - I have to admit, sometimes I look back on a post and think I shouldn't have said it...but it's hard to know who is trying to sell you something and who is just naïve about posting on a forum. This might have been a little bit of both. I hope things are going well!
stayingcalm

*was not able to send via private messaging :(

catcon49's picture
catcon49
Posts: 398
Joined: Aug 2008

Thank God we have people like stayingcalm to pay attention to those things. I for one would not have know that information. And you are right stayingcalm is always there to help another and to support anyone.

c

Dan620
Posts: 220
Joined: Dec 2009

Stayingcalm you are so needed here. I have read all you posts and blog and you are a most caring person with lots of info. Thank You for looking out for us. Dan620

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