Wish I didn’t have to be here…
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Dear Cedar – Hospice is a godsend because with them, you are not alone. They are on call 24/7 and they are so supportive to your loved one and to you. We had hospice for 3 1/2 weeks and wish we had them longer. They managed the pain so well. One day when Randy wanted to drive the car (and he was on too much medication to do that), I called them and a wonderful nurse came over and said, “Ok, Bud, what’s up with you?” He loved it. She wrote him a note and made him read it over and over saying, “Mr. Little, you may not drive the car. You could hurt yourself or someone else. DO NOT DRIVE.” It was so funny, but she managed him in a way I couldn’t in the moment. We are so thankful for hospice and the fact that they made him so very comfortable. Our thoughts remain with you as you face these difficult decisions. Blessings, Susan
Cedar, Home Hospice is just womderful, don’t know what I would have done without them. You feel like you are admitting defeat but that is not the case. Teddy was on Home Hospice for 4 months and they are right there for anything you need. They monitored him twice a week and as meds needed to be upped they were delivered by evening. When the time came for more equipment same thing. When the doctor says you might want to do this it is good advise. They do not intrude and in fact yourmom will love them as Teddy did. He used to look forward to the visits. At the visits they check bloodpressure, temperature and heart. They will ask about pain levels and how she is eating. Its all good and they give good advise. If you feel it is too much too soon they will abide by what you want. The other good oart is Hospice is there for you as well in any way you need them. I vote Yes, Go for it. Your doctor will set it up, they will call you for an in home visit and wa la, you are set and Mom is more comfortable.
Cedar – Hospice is not giving up. It is just a way to make Mom comfortable and to relieve the burden somewhat. There’s a lot of information about Hospice on this web site….do a search on the button at the top and read all the strings. The great thing about Hospice is that — if you decide your Mom wants to return for treatments — you can stop Hospice at any time. At the very least, have Hospice come talk with you and your Mom so you can make informed decisions. And…..think about another opinon…..for your peace of mind. Hugs – Nancy
Cedar:
Hang in there! Sounds like your Mom is entering a rough period in her journey with CC. She may need a Parcentesis (draining of the fluid) if the fluid is collecting in her abdomen. It’s a fairly simple process which takes about 30 min. tops. Sometimes it can be controlled by water pills, other times it cannot be controlled.
I know that watching a loved one go through this journey can be tougher on YOU than on the patient. I experience this first hand with my husband Tom. Please see my post under “My husband and Cholangiocarcinoma – Part 2” from early this morning. This may be something that can help you get through this rough patch in the journey!
Hugs,
MargaretThank you Lainy Susan and Marion,
It’s good to know you all understand, although I’m sorry you do for your own sakes. I realize I’ve been putting a lot of my frustration at CC towards my friends who haven’t been here for me, because I feel alone.
The scan and meetings w/ the dr were mixed, the scan was good: no growth. But the dr basically said there isn’t much more he can do, because chemo would be too risky now. They want to solely focus on quality of life. My mom said she feels a little like she’s been kicked out of the house. The “house” is Seattle Cancer Care Alliance, and they’ve been amazing for the most part, but I do think I’ll ask mom if she wants a second opinion. I don’t know who in the area would be as qualified as them to speak to CC, though.Along the same lines, what, if anything, do I need to know about hospice? The dr suggested she enroll w/ them. He said that if they get involved early, as this would be, that they have the ability to make her life better and possibly even extend it. I just don’t want to feel like we’re giving up… hope and moving forward is all we can do sometimes.
Thank you all again.Cedar, welcome to our wonderful family but sorry you had to join us. I am so very sorry to hear about your Mom. There is probably not a person on our Board who has not felt as you are feeling now. Much of that is the unknown and CC is certainly an unknown. I am hoping they can get that water down and I am praying for a good Scan and then the doctor can proceed with a plan. As Susan said, knowledge in this disease is powerful. One more thing I would suggest is that if at any time you feel uncomfortable with what the doctor is doing you have a right to another opinion. I do not think you are over reacting.
We have a saying around here and that is, we try to remain realistially optimistic. Please keep us posted on your Mom.Welcome Cedar – I hope you come to visit us often here. CC is such a difficult companion and one we never wanted. You will feel unbalanced quite often, but we encourage you to arm yourself with as much information as possible and get as much support as you can. We are certainly here for support and whatever else we might be able to offer – encouragement, understanding, a listening ear. Blessings to you as you walk through this with your mom. Susan
Hello cedar and welcome. You are in the right place for support, information, companionship, and you are with a group of people who understand of what you are going through. Your Mom must be quite uncomfortable due to her water retention. Does it appear that the diuretics are working only very slowly? Has she also cut back on her salt intake?
Luckily she will bee seen by the physician in another day and he/she may suggest something else.
Not feeling well is a big catalyst for depression or, as you say losing one’s spirit. Hopefully things will look more positive after Friday. Fighting this disease often is compared to a roller coaster ride. How good it feels when encountering the upswing again. Hang in there and please, tell your Mom we are rooting for her and are sending tons of good wishes her way.
All my best,
MarionI’m not sure this is the right place for me, but I’m just hoping for support from people who’ve been there. My mom has CC (diagnosed last november) and it’s inoperable. She’s got a host of other diseases that make treatment a challenge, and it sounds like it would be even if she were otherwise healthy. She’s had I think 5 rounds of chemo…
She had pneumonia a few weeks ago so the Dr. took her off the chemo, and since the saline IV she’s gained a lot of weight, can barely get into her shoes. They have her on diuretics but they don’t seem to be working very quickly. Her energy is really low. We are going to the dr again on friday for a CT and to see if we need to restart chemo or what the next steps are.
She was so healthy before the chemo, and I know she would probably be gone by now without it but it’s so hard to not be mad at the doctors and the drugs for taking away her spirit. I used to get so frustrated by her stubbornness when she wouldn’t listen to me or the drs, but now I wish she’d get some of that spunk back.I’m just scared, and not sure what to expect or what to look for. I never know if if I’m overreacting (I tend towards pessimism).
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