Mom diagnosed with CC and PC stage 4
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Hi JG, I do not believe a word has been invented yet for what a CC patient and Care Giver go through. You are doing good, just try to stay strong. If Mom wants to stay home and between you and Hospice it works, then I would respect her wishes. At the end I took Teddy to a Hospice Facility and wish I had kept him home. Teddy had plastic stents and they had to be changed every 2 -3 months. It’s just an out patient procedure and they give you a light sleep during it. Never apokogize for venting or bad days, we have broad shoulders and sure do understand. Then in between all that, try to take care of yourself! We care.
JG…reading back on your posting I realized that your Mom’s stent dates back to February of this year. Given the time passed I would mention it to the physician.
Hang in there. It is difficult to manage all. Allow yourself a breather too.
All my best wishes,
MarionMy husband also had terrible itching. Before the stents hsi bilirubin was as high as 28. Now with two biliary stents, his bilirubin is down to 1 !. His are plastic and they need to be changed every 8-9 weeks. If they put in metal stents, which are permanent, they can’t do radiation. As far as the ostomy, my husband does not have a colon. He had an S- pouch surgery five years ago due to ulcerative colitis. FOr 3 months while the connection healed, he had an ileostomy. The Hollister company makes supplies and are extremely helpful. Another great resource is an ostomy magazine called the Phoenix. It has great supplies and suggestions and ads for companies that often offer samples of different products you can try. Did you know they make an ostomy bag with a charcoal filter in it to help with odor? I can understand your exhaustion with driving so far and still trying to work and parent 4 kids. i only have one child, but do lots of driving when my husband is in the hospital or has chemo treatments.It is very rough on you. I know your Mom doesn’t want to leave her home,but if you are her only family, does she understand how hard this is on you and how much you want to help her?
I mentioned the itching to my Mom’s hospice nurse on Thursday of last week and he said it could be anything. She was prescribed hydroxizine (bad spelling without the bottle in front of me). She said today the itching was 100% better so that’s good. I do not know if her stent is metal or plastic, didn’t know it could be either of those, whoops!!
Thank you all for letting me come here to vent. Most days are great, just sometimes it goes south.
Tomorrow I am going to call her Hospice Social Worker and ask for one of their books that you all have mentioned.
JG,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you have joined us all as you have come to the right place for support and help, and you will get a ton of both from us all here. I know how tough a situtaion this is for you as I went through this as well with my dad. And you are so right about not wishing this on anyone or their family.
I echo what Lainy said about the jaundice and the stent possibly getting clogged and agree that this is something that you should mention to your mums hospice team. Do you know how long your mum has had this stent for and also, do you know if it is plastic or metal? Hospice will do an excellent job for your mum in keeping her comfortable and taking care of her needs, my dad went through hospice care also.
If we can help in any way at all then please just ask. We are all here for you and we know what you are going through right now and how you feel. Please stay in touch with us.
My best wishes to you and your mum,
Gavin
JG…..I have not much to add to what has already been mentioned on this site but, wanted to welcome you also. Please, know that we care and that we will stand by you.
All my best wishes,
MarionDear JG,
I am sorry your poor Mom has to go through all this. It must be hard on you to have to watch her suffer. What a sweet daughter to travel all that way to care for her. You must be exhausted caring for her and all of your children. I hope you can take just a few minutes a day just for you. That is the only way you will be able to keep up with all of this. Please know that I care and will be thinking of you, your Mom, and your family.Love, -Pam
Dear JG – I’m sorry to hear about your mom. How difficult to watch her struggle with this disease. You’re under a ton of stress with all this going on. Feel free to come here to vent. It’s a place of understanding, empathy, and support.
Is hospice able to take care of her ostomy supplies and changes? My husband had a colostomy for a time many years ago. It was hard on his skin under the wafer, and the bag kept wanting to break loose, which was why he didn’t want to leave the house. There are support websites for ostomates which may be helpful for you.
I’m glad your aunt is able to share the responsibilities. So much on your plate JG. Try to take at least a tiny bit of time for yourself (easier said than done I know).
Come here often!
xoxo
DianejG, my dad was 75 and living alone when diagnosised with cc. He was able to live in his house with my sister and I staying with him until he went to sleep in the evenings. The last 3 months he stayed at my sister’s house. I was his caregiver during the day. It is extremely difficult for patient and caregiver. We wanted things to seem as normal as possible. He battled infections and bile duct blockages. Like others have posted, make sure you speak to Hospice and let them know her discomfort. I know you are strectched thin! You can do it! Come back when needed for support. This site was a lifeline for me. Take care.
JG, yes it is terribly overwhelming. I know you will also get some more caring members answering your post. I didn’t know she already had a stent. The
stent could be clogged. Have they ever changed it? I would let Hospice know as they will let the doctor know. I don’t blame your Mom for wanting to stay home. Hospice can order anything she needs and get it to her right away. They got my husband a hospital bed and found it much more comfortable. I had them set it up in the living room and it worked out perfect. He had the large screen TV and guests were more comfortable. They also brought a walker and we asked for Oxygen. The oxygen of course helps the breathing but it also relaxes the patient which helps to keep them in a comfort zone. If you didn’t get it, also ask for their book on what to expect. It’s very good. You just keep posting as much as you need to, that is why we are here.Thank you Lainy. She already has stint in place would that make a difference? Back in Feb. she was completely yellow (jaundice) head to toe and that was when she was diagnosed. She is meeting with the nurse as we speak so hopefully some more relief there. I will get some of the cream and give it a try, can’t hurt. My Aunt checks on her also, she lives about 20 minutes from her. My Mom wants to stay in her own home until she can’t move, in her words. I am very relieved to have someone to share some of this with. It does become overwhelming at times.
Dear JG, welcome to our wonderful family of the most courageous and kind people the world over. I am so very sorry about your Mom. I am relieved that you have called in Hospice but I would let them and the Doctor know that she is itching as her bile ducts could be blocked. There is a cream at Walgreen’s/CVS called Sarna and it works pretty good. I know what you mean about the Cholostomy however, had she not had it the pain would have been horriffic. Please let Hospice know about the achiness as well. There are meds out there for everything and the bottom line is the comfort of the patient. You are a wonderful daughter and I can’t imagine traveling 3 hours 3 times a week. Is there no one closer to her that can also check on her? You have come to the right place and please keep us posted as we truly care.
My Mom, 73 years old, was diagnosed with Cholangiocarcinoma and Pancreatic Cancer Stage 4 in February of this year. Obviously it was inoperable. She did Chemo for awhile but then got a blocked colon. She had surgery on Oct. 20th and now has a cholostomy bag. That surgery has turned out to be the worst thing we did. It relieved her immediate pain but left her a mere shell of what she once was. It is hard to describe. She is very weak, is homebound, sleeps alot, eats a little here and there, shuffles to walk, and now looks like she will be passing by the Holidays. This person is just not my Mom–she has always been strong, independent, stubborn, I can do it myself, etc. Just unbelievable. We have Hospice care (excellent) in place and just try to take one day at a time since it becomes so overwhelming. I travel 2-3 times a week (3 hours road time) to make sure she is ok and do little things for her. Some days it is exhausting especially when you add into the mix our 4 children ages 13, 13, 10, and 8 all who have more school activities going on then I can handle. She does not have back pain but a constant achiness, as she calls it. She has now started complaining about the itchiness she feels all around her abdomen, back, etc.
I truly would not wish this on anyone and their family. I do want to thank the other participants on here for sharing their stories. Most have something in them I can relate to. Time marches on!!
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