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Donna,you have done really well and I am so glad Jim was able to stay home and that he could tell you all how he felt,that will be very important for your kids you will find.
You will probably get through the next little while better than you think,we get a big adrenalin boost at these times and it helps to get things done,it is a busy time unfortunately.
It doesnt last though and you will be in for some downs and ups gradually becoming ups and downs.Accept all the help that you are comfortable with.I am happy you had good care.My very sincere condolences JanetPhil,could your oncologist or GP talk through these results with you.Nobody on the board here is really medically qualified to do so or knows the background you see.
It sounds pretty good to me,check with your GP as to the finer detail but I think it all sounds ok,and of course vigilance and close monitoring is how it goes JanetRose,it is very frightening and I think the really quick decline and the big weight loss is very overwhelming.The loss of voice is a strange thing too,and makes you understand I think the grave nature of things.Your husband is aproaching the end,Rose,there may be a few relapses and plateaus but this is a time to say everything you need to and the rest of the family.Take all the support offered including the support here.
You might find it easier to post on the palliative section because lots of us have been where you are now and we can help.Its great Bob has the syringe driver as medication is so effective given that way and can be easily adjusted.
JanetGavin,
Thanks for posting that,I think it was beautifully done and even though it demonstrates the end of life journey it is not too full on. JanetHana,your dad sounds such a nice man!What a difficult time for you all,but this is how life is,it just rolls on!Your dad sounds like he hasnt got much time left so say everything you need to and make this time as special as you can,I have been through a similar time too.Good luck Hana Janet
Hana,the patches are slow release so try the 1 and a half.He probably needs something short acting as a breakthrough.You really need the hospice care even if it is for support and advice only,try and get it organized explaining your fathers reluctance but filling them in on the situation.I dont know how it works in Korea as I am in Australia but hospice care is about family as well as the patient.If you have had contact with them it will be easier if things change and you need urgent support.
I wish you well with your wedding plans JanetHana,I am so sorry for what you,your dad and family are going through.I am inclined to say dont postpone the wedding,I dont know if your dad will be able to go to it but you could involve him by coming to him,gathering with him after the wedding,just the family maybe.You do need to have a flexible plan in case he gets much worse. Good luck Janet
Julie,I should tell you that my husband died within 3 months of diagnosis and after only 2 cycles of chemo.I remain on this board as I am an RN with 30years experience and I like to help out.It is true that the chemo is palliative and can give extra time,some do better than others with it giving years rather than months but it all has to be weighed up with quality time which is really important too.I am able to look at it with my nurses eye.
I would have thought Canberra reasonably up to date but it is not Sydney!I have lived and worked in Canberra too.I found them pretty good in Wollongong but our area health is together with Southern Sydney.
Good luck and do your research,where do you actually live? JanetWell Julie my husband was given gemcitibine and carboplatin about 18 months ago and the oncologist said that was the favoured treatment then.I researched it and looked at clinical studies which indicated that gemcitabine alone or with a platinum had achieved best results so I am mystified with your experience.
We had an oncologist in Wollongong and went to a private cancer care centre for the chemo.The oncologist wasnt very lovable but knew her stuff.
Which centre are you attending for chemo? JanetJulie,I actually think you have been given wrong information.Gemcitabine with a platinum drug is what is usually given in this country first for this type of cancer so I am unsure what happened in your case.It sounds as if you should go with the other oncologist 4hours away if possible.By the way it is the gemcitabine that is the main drug,the platinum drugs like cisplatin are just to enhance the effect Janet
Julie it is important for you to get things in perspective,your oncologist is not trying to fob you off,he is trying to help and be realistic.You can get other opinions but this is a very difficult cancer to treat,you need to get a good understanding of cholangiocarcinoma to help your research Janet
