andie
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Kim,
It is so hard when you have to split yourself in two or even three! When my Dad was battling cc I spent everyday with him but I did live 2 minutes away, I can’t start to imagine how I would have coped if I’d have lived a distance away. At the end I didn’t see my son or husband much but I wouldn’t change a thing, I knew that my Dad was on limited time and that I wouldn’t get that time back again. Whats strange is out of what was the worst time of my life brought a closeness between Mom, Dad and I, that I don’t think I would have experienced without cc.
My Dad was very stubborn and right until the end didn’t want any strangers coming into the house helping him. He did love the District Nurses that helped change his external drain but that was all the help he would have. Luckily he was never in any pain. Although no physical pain he suffered mentally not being able to do things he loved to do, he was also the one we always went to when things needed doing and it was hard for him to have to receive help.
Please don’t feel selfish, you have to look after yourself too. You will find the strength from somewhere and when the time comes know when you need to be there. Don’t bottle it in, speak to your husband and daughter, tell them how you feel and ask for help. Times like these family need to stick together.
Take care x
One day at a time and enjoy every moment, even the bad days, as these make the good ones so much better.
Best wishes to you and Karl x
That’s great news on the scan. Fingers crossed the infections start behaving too!
Is he on any antibiotics? My Dad took Ciprofloxin (sp) daily and never had any infections. They also mentioned rotating antibiotics so that the bosy didn’t get used to the antibiotics if he started to get any infections, but luckily this didn’t happen.Best wishes
Andrea
Well done Malc!! You are truly an inspiration. I’m so glad the weather was on your side too. As a fellow AMMF supporter, Thank You!! x
Dear C,
Hoping tomorrow is a better day for you all. I’m glad the blood results had improved, that’s a good sign.
I can only imagine what a cc patient goes through. We always said my Dad never suffered pain physically but he did mentally. The once head of the family had to slow down and recieve help rather than be the one who gave it.
Stress can effect the appetite, I have had to force myself to eat since my Dad passed away. Perhaps little and often instead of 3 meals a day. I know at points eating became a chore to Dad, especially on down days. Perhaps now the Doc has given your husband a pep talk it may make all the difference.
Enjoy your break, prayers coming your way x
Have you asked the Doc to prescribe some supplement drinks like Ensure or Boost. These contain minerals and vitamins that Jesse may be lacking due to his lack of appetite. My Dad took 2 or 3 a day after his stent procedures and also after his external drain. They made him feel better and less breathless, which the Doctor thought was due to lack of essential vitamins. They do them in milk or fruit juice. My Dad prefered fruit juice flavours. My Dad did seem to like only certain foods after his stents, soups, tomatoes on toast, fish, noodles, mash potatoes, as he found these easier to digest. He also loved trifles and apple turnovers! not too healthy but it was lovely to see him enjoy them. Little and often may help too and make it easier to digest.
Sending best wishes
Keeping everything crossed for the MRI. I’m not an expert but perhaps if the light treatment works, the tumour may shrink enough for the bile to flow more freely. At the end of the day you need to decide whether the treatment is going to give Jesse a better quality of life, did the Doc discuss this with you?. I know every procedure has it’s risk and it’s something that is hard to decide and only you can make the choice.
How is Jesse at the moment?
My Dads bilirubin never came down but he remained painfree throughout his cc journey.
Best wishes
Andrea
Hi Minnie,
Has Karl been offered chemo or any other treatment?. I know Dad was hoping to get chemo but his bilirubin was never at a safe level. From the September he had an external drain as well as his external stents. He never had any pain, and even when he passed away he was painfree and very peaceful.
Sending best wishes your way
Andrea x
Dear Jesse,
This was why my Dad couldn’t get chemo. It would be too toxic on the liver and do more harm than good. The fact that they are willing to try localised radiation sounds promising. I will keep everything crossed for you both.
Good luck and best wishes
Andrea
I have replied to your post in the general discussion section. Also if you type in Therasphere in the search section, top right, you will be taken to a list of posts that deals with this.
Best wishes
Andrea
sitaram wrote:My Father has been diag with intrahepatic Colangiocarcinoma of size 6cm by 6cm , poorly differentiated in seg iv B extending into the porta location Y . there is mild dilation of intrahepatic bilary radicles. The dr has suggested therasphere. kindly guide. what is the life span without treatment ? & with treatment ? Can stent be inserted ?
Side effects of theraspere . Is it a viable treatment ?
my email naman_nirmal@rediffmail.comHi, and welcome to the CC site, I’m sure someone will be along to offer their advice, I would re post in the Introduction site as you may get more replies.
Where do you live?
As for time span CC seems to effect everyone different. My Dad survived 12 months without any treatment apart from stents. My Dad had extrahepatic CC which is outside the liver, so different to your Dad.
Have you got second or even third opinions? CC is rare and sometime the patients may need to push for better advice and experience.
Best wishes
Andrea
Dear Isellure,
My Dads CC was inoperable, also near the Y, and he had no treatment apart from 3 metal stents and in the end an external drain. Chemo wasn’t an option because of his high bilirubin level even with the stent. Have they offered your MIL any treatment, ie chemo?
Luckily my Dad never experienced any pain, only heartburn in the last few weeks of his life. The doctors told us 2-3 months when he was diagnosed and he lived 12months. BUT everyone is different and no one has an expiry date stamped on them.
I do agree though that the pain should be able to be controlled, it will probably be trial and error, what works for one may not work for another. I would call your MIL doctor on her behalf asap.
Best wishes
Andrea
I will keep everything crossed that the bilirubin falls or remains low enough for chemo to start. After one stent placement Dads bilrubin took over a fortnight to fall, this was due to inflammation of the ducts. He had to go back in for the dye to be put round and everything was working. In the end he too had an external drain and that remained what they called “static” ie the bile level remained the same even with the external drain. Dads level never fell low enough for chemo, but the fact that they are talking about chemo for your husband is a positive sign. We were told there was no chance of chemo for Dad.
Best wishes
Andrea
Sometimes the bile ducts can become inflammed after the stent/drain procedure and it can take time for the inflammation to come down. When did your husband have the drain fitted?
If the bilirubin is at a safe level to have chemo then the tumor may shrink and the bile will flow better.
Have they said when chemo will start?
