peebygeeby Posted June 21, 2008 Share Posted June 21, 2008 Hi everybody, Everything that has been tried to make Hanks breathing better has failed. The pulmonologist leveled with him yesterday, and told him that they don't expect that it will get better, and the next step would be a respirator if the breathing gets worse. Both Hank and I have decided that is out of the question. Now, what next? I spent pretty much the entire day yesterday stunned and crying, as did Hank. Last week when I talked to the oncologist he told me that the cancer had spread to his liver, and he asked me if we wanted to try Alimta. Hank said yes, so he had his first dose last weekend. Just don't know what to do. Can and should he continue chemo if we bring hospice into this? Hank asked me on the phone yesterday if I wanted him to come home. Meaning do I want him to come home to die. I told him of course I want him to come home. I will not let him die in the hospital. But to be honest I am scared out of my wits. I am anticipating that this will be the hardest thing that I've ever had to do, and I've had to do some pretty hard things lately. I am going to need all the help that I can get. I have no family left, and all of my friends live in other states. So, I am going to contact hospice. I just don't know if chemo can or should continue. I am so sad, but in a strange way it is at least a small relief not being in such a state of limbo anymore. Now we know. This is not going to get better. Thanks everybody, Gail Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted June 21, 2008 Share Posted June 21, 2008 ((((Gail)))) I am so sorry to hear this news. I understand exactly what you are going through. I am in a similar place with Larry. As far as Hospice, Larry has been on Hospice since the end of January and has continued chemo the whole time. Talk to Hospice about it. In our case, chemo is considered palliative, so our insurance pays for both Hospice and treatment. As for continuing treatments, Larry and I agreed long ago that his wishes are the only wishes that count. My job is to support him in his treatment decisions. Doesn't mean we don't talk about it, but his decision is the one we go with. I don't know if this will help you or not, but know that I care about you and Hank. God Bless, Lynn Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 21, 2008 Share Posted June 21, 2008 ((((Gail))))) I am so terribly sorry that Hank is having problems right now. I only hope and pray that the Alimta will help him - its has kept me stable for 13 cycles now. When it works, it works well!! Please remember to take care of yourself, too. I feel so bad that you are alone there. Wish there was more I could do to help you, Many caring hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted June 21, 2008 Share Posted June 21, 2008 Gail, If possible, shop around for Hospices that WILL allow him to do chemo still. Some won't. But if you can find one that will, go that route. I'm so sorry that you guys are going through so much and that things look so bleak. I know it hurts, and I'm so sorry for that. Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 21, 2008 Share Posted June 21, 2008 good morning Gail. I am saddened by your update. I hope you are able to find a hospice that will allow the chemo. I hope you get him out of that darn hospital and home. I pray that you get some help. And I pray for you both at this difficult time for the strength you will need. My heart goes out to you Sandra Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 21, 2008 Share Posted June 21, 2008 Gail: I don't know how I missed this! (I had pm'd you after this was posted and never saw it at all). I am so sorry, particularly that you two are having to go it alone. I see no reason for him to stop the chemo and I know my own hospice allows Alimta. Are the docs recommending a particular hospice? Not only should they allow the Alimtak, but I would definitely try to get a non-profit if possible (much better care, higher professionalism, not $-oriented). Hospice does not supply round the clock caregiving and private caregiving is not usually covered by insurance (nor tax-deductible either), but you will undoubtedly need caregiving help if you bring him home. Your choices are either a private caregiver (preferably a CNA) or an agency (the latter is usually significantly more expensive). Although they don't provide round the clock caregiving coverage at home, they do have an RN that can give IVS, draw blood, etc. and a social worker who will know what resources are going to be needed by you and how to locate them, etc. It is important that you meet with them BEFORE you bring Hank home so that you're set up as well as possible before he gets there (hospital bed, commode, wheelchair, walker, oxygen supplies, etc.). I'm sure there's more I'm not thinking of, but I should add that I agree with everything that Lynn wrote, too. Carole PS You have my number. Call me any time you want! Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 21, 2008 Share Posted June 21, 2008 Oops! I chemo-fogged the dates. Now I see that you just now posted this; ergo, I was a full week off (last Saturday vs. this one) Sorry for confusion, Gail, but otherwise I think everything else I wrote made sense. My heart is with you both... I only wish my hands could be, too. Carole Quote Link to comment Share on other sites More sharing options...
simplyklb Posted June 21, 2008 Share Posted June 21, 2008 Hi Gail, I am so sorry to hear about Hank. You and Hank are in my thoughts and prayers. Please do not hesitate to contact hospice. One of the best tings that the oncologist's office did was call in palliative care for my dad. The nurse practitioner listened to us and got us the referral. It's truly a Godsend! I have scheduled a volunteer to come in once a week so I can get out for a few hours with friends. My dad is not happy about it but my mom enjoyed it. The volunteer who came last night graduated from high school with me! Next week we should meet with the social worker and Dad has an OT evaluation to determine what he needs are here at home. Kristi Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted June 21, 2008 Share Posted June 21, 2008 Gail, I am saddened to read that Hank is not diong well. Please know that you are both in my thoughts and prayers. Denise Quote Link to comment Share on other sites More sharing options...
deb10653 Posted June 21, 2008 Share Posted June 21, 2008 Oh Gail I am so sorry to read of this setback and totally understand what you are going thorugh since I am having to do this alone and with Dave's lack of mental stability am having to make the chemo/no chemo decison this week withour his input, this damn disease just seems so unfair! I hope the chemo works for Hank and you can find a Hospice to help with chemo and what else is down the road. I will do that transition shortly, from the palliative hospice to full blown, they will help and ease your worry people tell me. Hang in there and make the most of the time you share togethe! Deb Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 21, 2008 Share Posted June 21, 2008 Deb and Gail: Like Dave, I am on Palliative Care preparatory to going into Hospice Care, but because I am single, live alone and don't want my family to have to engage in any more decision making than is minimally necessary, I have taken a number of steps in recent months that are in "advance" of my condition (based on my knowledge as to what I expect my condition to become). These include my having signed an AND (Allow Natural Death), which is the latest euphemism for a DNR (Do Not Resuscitate). I probably wouldn't have signed this yet (since my overall health is still fairly good) except for the fact that I have severe Prednisone-induced osteoporosis, which means that CPR would definitely crush my ribs and sternum, which would puncture my lung, which would put me in hospital and then nursing facility until death do me part--which does NOT meet my Quality of Life standards! The other step I took is one that I recommend that everyone over 18 years of age do--regardless of their health--and that is, I signed the Five Wishes form, which is not only a durable (medical) power of attorney, but MORE IMPORTANTLY (to me), tells everyone (both health care professionals and my family members) exactly what I want in the event of my dying. The Five Wishes form is online at http://www.agingwithdignity.org/5wishes.html and you can simply download it to your computer and print it or ask that a copy be mailed to you (the hospice/palliative care personnel all have copies, too). As I wrote above, in my opinion, everyone over 18 should sign one of these (did you all know that 45% of all caregivers predecease the patients they care for?), but in the meantime, it might make it easier for those of you who are family member caregivers (particularly next of kin) to go over the Five Wishes form with your spouse/parent, etc. rather than just ask direct (and potentially "ugly") questions. The form even asks about what kind of music you would like played, or if you want books read to you, etc. It is very "gentle" and yet informative, too, and hopefully will be of as much help to some of you as it was to me and my family when I filled mine out. Affectionatly and empathetically, Carole Quote Link to comment Share on other sites More sharing options...
shineladysue Posted June 21, 2008 Share Posted June 21, 2008 Gail, I am so very sorry Hank is not doing better. There just aren't words to tell you how I feel , but you have my heartfelt thoughts and prayers. I have no experience with hospice services, but from what the others are telling you, it sounds like they may be a big help to you and to Hank. I do hope that is the case. I'm glad that there are many here who can share their experiences. Hang in there Gail and post when you need us. God Bless, Sue Quote Link to comment Share on other sites More sharing options...
LovesLife Posted June 22, 2008 Share Posted June 22, 2008 Gail - I am so sorry to hear this latest news. My heart is so heavy for you and the load you must bear. I have no experience with hospice in the States, so all I can tell you is that I will be thinking of you both and praying for whatever you need to get through this difficult time. Take care, Linda Quote Link to comment Share on other sites More sharing options...
fillise Posted June 22, 2008 Share Posted June 22, 2008 Gail--prayers for you and Hank continue. . . ((((hugs)))) Susan Quote Link to comment Share on other sites More sharing options...
shellit74 Posted June 23, 2008 Share Posted June 23, 2008 Gail, i am so sorry to hear about Hank. I can relate to how you are feeling. Dad was in a simular situation at the end too. I hope that you find the right support (hospice) and get Hank home with you and that you two will be able to share some time together. Shelli Quote Link to comment Share on other sites More sharing options...
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