January 21, 2014 at 8:18 pm #78615darlaParticipant
Just found this post and see you have already gotten lots of good advice. Don’t have much to add, but I too want to welcome you. Glad you found this site as it is the best place to be dealing with CC.
I also admire your courage as you face this and am glad you can draw comfort and strength from your husband even tho’ he is no longer with you. I have often wondered how I would cope if I were in a similar situation now that I am alone and don’t have my husband here to help and support me. I hope I would be able to face things as courageously as you. I too have great respect and admiration for you and wish you the best on your journey.
Love & Hugs,
DarlaJanuary 21, 2014 at 5:54 pm #78614marionsModerator
Pat….I can only echo Lainy’s comments: you set an example of how to face a difficult diseases in the most dire of circumstances. You have my greatest respect and admiration.
I also wanted to point out that Hospice organizations vary with their approached and if possible you might want to interview one or more prior to your signing up. You also want to make sure to meet the personnel. Unfortunately, in some instances, we have received some not so pleasant reports.
As a whole though, the good reports by far have superseded the not so good.
Hugs and love,
MarionJanuary 21, 2014 at 4:26 pm #78613
Dear Pat, I admire you and your courage so much and just so you know I would have made the exact same decision. Your attitude reminds me of my Teddy’s attitude. I am ‘honored’ to know someone like you. Feel free to keep posting and/or email me if you like, I hope to hear from you and I am wishing you all the best!January 21, 2014 at 7:39 am #78612ladylindenParticipant
Dear Lainy and KrisV, Both of you have been so helpful in providing information to guide me through this very difficult time. As I mentioned, my husband who was my mentor, confidante, friend, guidance counselor, advisor and teacher died June 16, 2011. He taught me about courage in crisis. I admire the people who have faced so many ups and down and still do not give up. I plan on going into Hospice care, as I do not want to wait until I am unable to understand and make decisions. Yes, I filed my Statutory Will with the court house on Friday. It wasn’t necessary to file with Court, but I know the original will be kept safe. I am beginning to fill out the Probate Court forms and that will make it easier for my daughter. I don’t like to burden others with paperwork, attorneys, etc. and I was a legal secretary for 10 years prior to starting a small business with my husband. The other day I was watching a religious interview and the host was interviewing a man who had walked in fear most of his life. He was afraid to live his life. Fear had frozen him. He found the right church and became a Christian and was saved. He said “Now I am guided by faith and not by fear.” I thought these few words were powerful. His life has changed drastically and it’s as though he has been given a second chance at life. Sometimes you just never know that what you say can change a person’s life for the better. This site has given me the courage and guidance I’ve needed throughout this difficult time. And I thank you for taking the time in your busy schedules to respond and share your experiences! As always, it is appreciated. Sincerely, Pat from Linden, MIJanuary 18, 2014 at 6:31 pm #78611kvollandParticipant
Sorry to hear how things are going. We have been there with the blood infections….Mark had three of them after his surgery. I swear we lived in the hospital this summer.
I am with Lainy about the Hospice. There is so much that they can offer and it is so much better to start when you are feeling better then when it becomes a crisis. It becomes about quality of life…which can kind of be a relief when you are battling so hard against anything. If nothing else listen to what they have to say then make a decision when you are ready.
There is a lot of support they can offer. Nursing services to help you not have to go in the hospital or the doctor. Spiritual services which is non-denominational. Social worker to help with any needs that you might have. Bath aide to help when you can’t do it on your own. Medicare (Home health and Hospice’s governing agency) requires them to offer complementary therapy….ours offers massage, aroma therapy and music for relaxation plus volunteer hours that can come and sit with you so family can get away. Another agency I know of offers Reiki therapy. There is also a respite benefit that gives you/your family a longer break if needed. My hospice also offers inpatient hospital admits for symptom control such as if they pain gets out of control or nausea. They will work with you doctor but they have their own doctor that can assist with care if needed….you always have someone who is in your court.
If you don’t feel that you are ready for Hospice you may look into a home health referral which can assist with keeping you out of the hospital by coming and seeing you at home and monitoring you closely.
Hope this helps and realize that any decision you make is the best one for you.
KrisVJanuary 18, 2014 at 3:57 pm #78610
Dear Lady, I am familiar with those nasty blood infections and I know they can make you feel like this is it! IF your ONC has suggested Hospice Home Care he will set up the appointment. Do NOT be afraid, they are like angels and will not only care for you they become your best friends. You can order anything you might need, example, for Teddy I had a hospital bed set up in the living room which was bright and airy and of course the big TV. When you reach that point I suggest the bed as you will be more comfortable and I bought a lambs wool sheet which added to his comfort. As we moved down the line I ordered a walker, a commode, and then a wheelchair. They even have a nurse who will come give you a shower. Of course your comfort is above anything else. You are very courageous and it sounds like you are getting your house in order so to speak to meet whatever comes your way. I have never been afraid of what is to come and after walking Teddy through his Journey I am convinced even more so. I realize you are just preparing your way for Hospice but you asked for some advice on it so I wrote a book, sorry. LOL You can ask me anything I am very honest about it all but if it gets sticky please email me. I am sending you a ton of hugs and love.January 18, 2014 at 6:47 am #78609ladylindenParticipant
Hi, Would like to know your opinion about Hospice care. I was diagnosed Memorial Day 2013, Stage IV, inoperable. I just had my fifth stent procedure. I tried chemo in October, 2013, ten days after my 4th ERCP. A few days after each chemo, I was wiped out for 9 days, laying in bed totally fatigued. In November I began to get chills and felt unwell. I did not want to go to the hospital because I was too sick! December I wheeled into the emergency room and was admitted due to a blood infection. After five days I was released and home care administered cipro for five days. I thought the infection was gone. Wrong! In December with each passing day I got weaker, nauseous, falling down, chills, could not eat or drink. I was really on my way out and again, felt too sick to move. Also, I had not completed my Statutory Will and felt I had to finalize it because I felt so bad and felt I was on my way out of this world. In January 2014, I walked into another hospital (my hospital that does the stents and what a great job they do at keeping me alive!). It was determined I still had a serious blood infection and I was admitted for three days. My hospital got me back on my feet! This past week I actually feel better than I have for three months. Appetite is back, nausea is gone, and I am getting stronger by the day. In November, December and first 9 days in January, I could hardly walk! Make sure that after stent procedure that you do not get a blood infection. Get to the doctor immediately. I suffered several weeks due to being so sick. I no longer take chemo, two treatments were enough for me! Next infection, I’ll get to the emergency room pronto! I’m taking it day by day and getting my legal papers in order while I feel okay. I am being hospice evaluated in a week or two. I don’t want to wait until I’m incapacitated to make a decision about hospice. Does anyone have any opinion about hospice? Any suggestions would be appreciated.January 12, 2014 at 8:44 pm #78608
Dear Dianna, this is always the toughest decision to make, chemo or not. When my Teddy went through this he was 73 – 78 (5 years) and the biggest question we always asked the ONC was just what you did. Would you suggest chemo if this was your Father? The ONC offered Palliative Chemo and after 2 days of thinking, Teddy decided no. He was at that point almost 78. The ONC had said it would buy him a month over the 6 months he predicted. He was right on. But for the most part they were good months that maybe he would not have had as good. In my mind I also thought why chemo now as for the last 5 years of his life they said no, that it would not help. I would also prepare yourself to ask the ONC about Home Hospice. They sure are a big help and it would give you time to spend just being with hubby. Chemo brain is awful and fairly close to feeling like you have dementia. I am on Remicade which is like taking chemo, horrible side effects but the worst is when I can’t think as it gets so frustrating. My kids and friends all fill in words for me. I feel so bad for people with Dementia and Alzheimer’s as I can understand what they are going through. I keep asking everyone to please be patient with me. The other day I asked my daughter how it felt to exchange roles with me and we both laughed. Just please know that what ever decision is made is the right one!January 12, 2014 at 8:15 pm #78607willowParticipant
I’m not sure but my guess is that giving your already weakened husband chemo would be worse for his health than not. It is toxic and could cause more misery. Also, there is no guarantee chemo will help him, even if he was healthy enough to have it. Chemo for CC is really hit-and-miss (and when it works it often stops working after a matter of months due to mutation of the cancer or tolerance to the drug with this kind of cancer which is why we are pushing hard for new therapies. I hope this helps.
Bless you and your husband.January 12, 2014 at 8:10 pm #78606kvollandParticipant
To chemo or not to chemo is always a huge decision. I think most all of us have dealt with it at one time or another. My husband had a Roux-en-Y surgery which is similar to the Whipple but does not involve the pancreas at all. We had one positive node out of 7 and clear margins. Chemo was given to us as an option. We opted to go for it.
My husband is younger (50) but has diabetes and hypertension along with radiation from a previous cancer. It has not been a picnic dealing with the chemo…one of the side effects that can happens is “Chemo brain” and my husband has it pretty bad off and on. It’s similar to early stages of dementia…forgetfuless, illogical thinking, poor judgement and impulsiveness. Chemo can make the underlying dementia worse and then there are the concerns about other side effects such as the nausea/vomiting, weight loss and other problems.
I suspect you think the doc is “giving up” on your husband and I am not sure that is true. Choosing to opt for quality of live over quantity of life is just changing your goals…..comfort is the goal rather than cure.
I don’t know where your husband is in his dementia but if he is still able to make some decisions you may try putting it all out there for him and see what he says. He might surprise you.
But the bottom line is you do what you think it best. We can give input but you need to do what you need to do.
KrisVJanuary 12, 2014 at 6:44 pm #9394diana4453Participant
Oncologist says hubby is to weak and is concerned about his dementia. When ask if he would give his father chemo in this state, he said no. Whipple Procedure was Nov 19 and I know his weakness is due to the surgery. He said it is stage 3 possible stage 4 since it has moved to the lymph nodes. He has a CT scan setup for 1/21 followed by labs on the 28th. I don’t understand where he is coming from. Is this considered to late. Can it really make his dementia worse. Will it give him more time? Been reading a lot on this site to help me understand. To monitor and keep him comfortable sounds like the doc will do nothing. Surgeon is talking to two other Oncologist for their opinion. Hope I get better results from them. Has anyone else dealt with these issues ?
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