jemima
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Definitely a miracle. Well done on managing to live as normal a life as possible and reaching your goals. With an attitude like that I am sure you will see the next ones through as well.
Thank you for giving us hope.
Best wishes
JemimaHi Andie
I hope you are doing OK. I was thinking about you a few days ago but hadn’t managed to come on here but looks like you were around anyway !
Yes, things are looking good for Mum at the moment although I know that it can change suddenly but she is enjoying life at present and doing almost all the things she wants to do so we are just going with it while we can.
The oncologist appointment will be a bit of a milestone as we can then begin planning the summer holiday we are hoping to take with my girls. Last year we thought would be her last trip to France but if all stays well then she will get another chance to see all her family over there.
best wishes to you
Jemima
Erica
We are very fortunate in that my mum’s appetite has not been affected at all and she continues to eat very well, and has even put on weight. She is taking most of the vitamins/minerals and supplements that Andy recommends (see post on Alternative treatments I think), and that really has seemed to help her. As Lainy has suggested the high energy drinks seem to be the thing that work best for most people and it’s just a matter of finding what she likes. I hope with all my heart that your mum’s appetite comes back.best wishes
Jemima
Hi Marion
Well I suppose if it slipped out of the bile duct then it may have gone further down, into the small intestine and then, well, out I guess !
It’s not on the scan anywhere and he doesn’t seem concerned so presumably we shouldn’t be either ?!
Mum’s seeing the oncologist mid-June so we’ll ask her what she thinks. Not that she is a very positive person at all but she may have a better answer.
best wishes to you
Jemima
Hi Lainy and Marion
Thanks for the replies. I asked Mum’s consultant about the stent in more detail and he said that it has probably slipped out as the tumour has shrunk. So good news I guess but it all seems just that….guess work !
Jemima
Hi Mandy
Thanks for the update. It is great that your mum has got the chance to go for surgery as this really is the best option for CC. I will be thinking of you, your mum and your family on Tuesday. Do let us know how she gets on.
best wishes
Jemima
Hi John
Welcome to this wonderful site and all the amazing people on here. As Lainy has said getting another opinion is a good idea, or even a couple more.
My mother was diagnosed Feb 2010 aged 77 and was basically told that nothing could be done as it was inoperable (she has a Klatskin tumour). We went to another surgeon who did not hold out much hope for her future. So we tried abroad and they also said that it was inoperable, but only just, and to try chemotherapy as just a little shrinkage might make the difference.
So Mum went through 3 months of gem/cis with very few side effects, and although there was no shrinkage there was also no growth. So we see that as a positive and she has been living her life as normally as possible.She last had her plastic stent changed 1st June 2010 (very rare for it to last this long so again we see this as a positive), and apart from getting tired more easily she looks and feels well.
As I am sure other people will tell you no-one is born with an expiration date, so do seek other opinions, get as well-informed as you can about cc and keep living your lives.
Most of the doctors and professionals we have met have been incredibly pessimistic about mum’s future but here we 14 months later and still going strong.
I wish you and your mum the best.
Jemima
Hi Lulu
Yes there is always hope. When mum was diagnosed last year I looked first on the internet and was totally sure that she would not be here today. However, 13 months on and she is doing really well. She is still at home and looking after herself and feeling well. She is not a candidate for surgery so has had chemo and will probably start again in a few weeks. She is now 78 years young !
It’s good that surgery is a possibility for your mum. Is she feeling better now that she has the drains in ?
I know that my mum couldn’t tell my brothers herself what was wrong with her. I think it would probably have made it all too real and even now she doesn’t discuss it with them. Since she lives alone I am the one who goes to all the appointments with her so it is easier for me to know what’s going on. Maybe it is all too new for your mum and stepdad and they just don’t know how to deal with it all.
I wish your mum the best of luck for the surgery.
and best wishes to you and your family
Jemima
Dear Mohit
I am very sorry to hear about your mom. My condolences to you and all your family.
Jemima
Hi Lulu
My mum was diagnosed in February 2010 and I was in the same state after diagnosis. I have found this site to be of great help both for information and support, and I am sure that you will too.
As Lainy says do as much reading as you can about cc so that when the doctors tell you things it is easier to understand what is going on, and as Joolz says, whenever you think of a question write it down so that you don’t forget to ask it at the next appointment. Recording your Mum’s session with the doctor is also good as it is difficult to remember everything that has been said. Also in my experience what your Mum hears and what you hear will be different.
My mum did not have a biopsy either, just scans (CT and MRI). She has had plastic stents since diagnosis. Does your mum have this or an external drain ?
Has the doctor talked about any treatment options yet ? Do you know where the tumour is ?
It is such a lot to take on board at the moment and I really feel for you.best wishes
Jemima
PS Are you in the UK ?
Dear Andie
It sounds like you had an beautiful celebration of a beautiful person’s life. To have so many people there from so many aspects of his life is real testament as to what sort of person he was and how many lives he touched. I remember you posting last year wondering how you and your mum would find the strength, but you have and I can only hope that you all find strength in each other now that your dad is at peace.
Sending you my heartfelt best wishes
Jemima
Congratulations on such good results. Sounds like a fabulous holiday you have planned. Enjoy enjoy enjoy…..
Dear Andrea
I am so so sorry to hear about your Dad passing. A blessing I am sure that he remained pain free and that you and your Mum were with him at the end, but no easier to bear. He sounded like a wonderful father, husband and friend.
My heart goes out to you and your family at this time. From your posts I know that you will have some beautiful memories to remember him by. He is now at peace.
Hugs and blessings to you and all your family
JemimaDear Alison
I hope that your father in law has done well and is now out of hospital. What a small world it is….. my mum is being treated at Carmarthen ! She was diagnosed there and had her stents put in, and is having chemo there too. She is with Mr O’Riordan who has been very good to her, as have the chemo unit nurses who are all fabulous at being reassuring, professional yet friendly.
Has your father in law decided whether he wants to have any treatments at all ? The one thing I have found is that everyone (in the hospitals) is very negative about chemo and radiation and the like. It is worth doing some reading up yourself and also getting someone to explain exactly what his options are. From our experience you do have to ask for proactive things to happen rather than someone else suggesting them. I think this might be something particularly British/NHS !I hope that you and your family are doing OK. I have found this forum to be a real help both emotionally and educationally.
best wishes
Jemima
Dear Andrea
Your dad does sound amazing, to have gone through so much illness and now still to be thinking of others. I am glad that you are able to have this time with him even if he is asleep for a lot of it. At least it is peaceful sleep and I hope for all your sakes that it stays that way.
Thinking of you and sending you strength.
Jemima
