New Member – sister in law, only 40 with cc
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Dear SIL,
I am so sorry to hear about your sister-in-law. You and your family are in my thoughts. These are such precious moments..Hugs to you,
Jeeyoung
SIL….My heart is with you. I am sorry to hear that your sister in-law’s disease has progressed to this point. As the others have mentioned, Hospice will provide your sister in-law with the comfort and dignity she deserves. You, her loved ones, will be able to cherish forever the opportunity and the preciousness of your togetherness.
Please know that our members have established a list of physicians and treatment centers
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126Our Randi is in the process of cleaning it out (so to say) and hopefully soon, we will be able to display this ongoing, member established thread in a more prominent and easier to access place.
Hugs and love,
MarionDear Tyler,
I am sorry to read about your sister in laws deterioration. It must be incredibly hard for your family.
Hospice care will ensure she is truly comfortable. Treasure every minute.
Dear SIL, I am so sorry to read of the latest developments on your SIL. The most important thing is her comfort and I do hope they are keeping her comfortable. I have a list of things to look for as you reach the end of this terrible journey. I would gladly send you by private email the list if you wish. Above all keep telling her that you love her, remember the hearing is the last to go. I am praying for her to have a peaceful journey.
Dear SIL,
I am very sorry to hear about these developments with your sister in law. My thoughts are with you all at this moment in time. Yes hospice so do provide a comfortable caring environment for all concerned. My dad was in hospice care for his last few weeks and both he and I have nothing but great things to say about the care that he received whilst there.
Yes we do have an area on the site that you mention and it was created by the members here sharing either theirs or their loved ones medical team and info etc. It can be found here –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
We do also have a list of major treatment centres on the site but that part is US focused, but the above link contains much info from other parts of the world. By all means feel free to add anything that you wish to the above link as it will be very useful to UK members.
If we can help at all in any way then please just ask and we’ll do what we can. Yes this is the time to treasure all these days and moments and once again, my thoughts are with you all right now.
Hugs,
Gavin
Dear SIL,
Im so sorry to hear the update about your sister in law and the change in her condition. But as Bonnie said “make the best of everyday” is the most important now.Hugs,
HughDear All
I wanted to thank you all for your kind words and information. I would like to provide an update and let you know that my sister in law has deteriorated rapidly and her time will end soon. The CC was too far advanced when diagnosed for any constructive intervention to take place. The Hospice team have been wonderful, it is such a caring and supportive environment for patient and their family and friend support network.
When I glanced at the new introductions board I had a question – is there an area on this site that lists CC specialists by region? It might help if visitors to the site could access this information – or maybe this information is more appropriate on another site? Just a thought. Once you have been touched by the CC journey it seems a waste to let knowledge of specialists etc not to be shared to spare those newly diagnosed from having to start from scratch. For example, Prof Lodge in Leeds, expert in CC – how do people find such experts if they are not referred? It’s just a thought.
x
Bonnie, you are totally amazing! You are a Super Hero of the best kind, what an attitude, an excellent example for all. You remind me of our Kris who has the same kind of attitude. If you don’t mind Kris…….Kris says I am not sick, I just have Cancer! You girls just blow me away. You have no idea how many people you help with your attitudes. Keep up the good work and I always look forward to your posts.
I also want to add that I had a permanent stent put In in November and that stopped the jaundice and for the most part the vomiting. I too had so much trouble and pain with the constipation. Finally I was put on liquid lactulose and 72mg twice a day slow release of hydromorphone. I have been on those doses for 4 months to date and am pain free. Every now and again I get a little pain from the constipation and I take 2 extra strength Tylenol and a 4mg break through hydromorphone and it is gone within a half hour…I am actually feeling better now than I was in Nov-Jan so something is working!!! I am maintaining my weight but not gaining. I eat small meals often throughout the day. I have been travelling from Nova Scotia to Toronto and Ottawa and am planning a road trip with friends from Nova Scotia to Bangor MAINE which is about a 7 hour drive. I rest when I need it but try to be up and active as much as possible. Has your SIL had a stent put in? That made a big difference with the vomiting for me. The weight loss all pretty much happened before I was finally diagnosed. Please if you have any questions that I can help with let me know….best of luck to you all…
Hi
So sorry to hear of the diagnosis. I am 49 and was diagnosed in September and told in November that I was am inoperable. They told me Cheemo would not help to shrink the tumour as it has also spread to the liver, they feel that the chemo would do me more harm than good bc of my severe weight loss….about 5o pounds. I am on hydromporphone for pain. I also take senekot and Lactulose for the constipation due to the pain medication. The only other thing I take is Vidatox…I got this from a friend that got it for me in Cuba….it is called blue scorpion serum and is supposed to be good for cancer it is a homeopathic medicine….I don’t know if it makes any difference but my Dr. said it cant hurt me so I take 5 drops twice a day. I have no pain and am up and about every day. They gave me 6-18 months….so far I am doing well and am just happy to get up every day and spend time with family and friends!! so far as I know there is no cure except for surgery! What I do is make the best of everyday! I eat as much as I can and whatever I can keep in no matter what it is. I wish you well!!Dear SIL,
I am so sorry to read about your sister in law and the change in her condition. My sister who was 41, died in March after only 5 months after being diagnosed. You are doing all you can for her and the care she will get in the hospice should address all the symptoms she is having. There are many different drugs that can be tried to help with things like vomiting and constipation if one does not work then another will be used. Even when someone cannot be cured or treated, there is so much than can be done to help with the symptoms that they have. There is no need for your sister in law to be suffering.
Gavin mentioned the syringe driver which can help enormously. It can be used just for anti-sickness or they can combine many different drugs in it to help with pain and agitation as well. The dose can also be increased quickly if needed.
We cared for my sister at home for the last 2 weeks of her life – that was where she wanted to be. I understand how incredibly hard this is for you and your family and there is nothing I can say that will make it easier. But there are so many here for you – the support is incredible. If there is anything you want to ask me and I mean anything then please ask.
In my thoughts.
Clare
Dear Tyler,
I am very sorry to hear about your SIL and what has happened these last few weeks. I so know how you are feeling right now as my dad went through this as well. He was also taken into hospice care to help try and deal with the symptoms that your SIL is experiencing right now. I also agree that hospice is the best place right now for your SIL and that they will take great care of her there. My dad had nothing but good things to say about the care that he received in hospice, nothing at all was too much trouble for them.
Have the doctors there mentioned anything about a syringe driver? They put my dad on one in hospice and it helped him greatly. They felt my dads meds were not getting a chance to work due to his vomiting as he was bringing them up again so quickly. The syringe driver gave my dad his meds over a continuous 24 hour cycle directly into his body so he did not have to swallow them. They were giving him anti nausea meds, pain meds and Haloperidol through that and I have to say that it worked very well for him. Plus he was getting pain injections as and when he wanted them too.
I know that this such a tough time for you all right now and if we can help in any way we so will. We are here for you Tyler.
Thinking of you right now,
Gavin
Dear SIL, I am so very sorry to hear what your SIL has been going through. I have not heard of an injection for nausea but I do know there are some Meds that can be given like a suppository, unless those too have been tried. Please know that having your SIK is the absolute correct move to have made. I so wish for your SIL that they can find something to alleviate the pain and take care of the nausea. Sending you all prayers and wishes for a more comfortable
time.
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