darla
Forum Replies Created
-
Posts
-
Kris,
That was well stated & I totally agree with everything you said. Unfortunately here in the US I am part of the minority of people who feel that it could work like that here, too.
Darla
Dear Elicia,
I agree with everything that has already been said. We all have our share of “what if’s” and regrets, but I am really beginning to believe that we all have done the best we can with the situations that we have been given and that is all we can do. Take care & know that my thoughts and prayers are with your Mom, you and your family.
Love & Hugs,
DarlaDear Kris,
I am so sorry for this disappointing turn of events. No one can blame you for feeling so down. It seems like just when you think things are going along fine you are blindsided by this awful disease. You are young, it was found early and as you said it is slow growing. You have a lot going for you. You are a fighter with an attitude. I’m betting you will win this round too.
Thinking of you and hoping for better days ahead. Please keep posting and updating us on how you are doing. We are all here for you as you are for every else.
Love & Hugs,
DarlaHi Elizabeth,
Welcome. You have come to the right place for help & support. This is a great site and a wonderful group of people all who have been touched in one way or another by this awful cancer.
I can only tell you what I have learned from my experiences. In my husbands case, his first symptoms and ultimate diagnosis came at a point when the cancer had already invaded most of his bile ducts. He also was intrahepatic and was inoperable. They only thing they were considering was some type of pallative chemo that ultimately was not possible because his condition deteriorated so quickly that his body was no longer physically in any condition to undergo any type of treatment.
That was our situation. Others have done much better. Everyone’s cancer and situation are different and what does or does not work for one may be the opposite for the next person. I guess her condition and the progression of the disease will be the deciding factor in treatment.
At this point I would suggest getting other opinions as soon as possible and then make your decisions based on what you learn and what your Mum feels is best for her.
There are several people on board from the UK and I am sure you will be hearing from some of them shortly. They may have some suggestions as to where to go or what to do next.
This disease is so very unpredictable and does not play fair, so whatever you do I would do it as soon as possible.
I am glad that you found us but sorry you have a need to be here. I will be hoping for the best for your Mum and you. Please stay in touch and know that everyone here is more than willing to be here for you with advice, comfort, support and even just to lend an ear when you need to vent your feelings.
Take Care,
DarlaDear Sue,
I just went back & reread your post. It was good hearing from you and catching up with what is going on in your life which seems to be a lot. How exciting for Sam. A new job & a new home. I know you will miss having her around, but atleast having your Mum there for a while will help fill the gap.
It sounds like work (or sometimes lack of) is getting the best of you. I sure know how that feels. Not having our husbands here to share it with makes it all that much more challenging. The shop has actually picked up some and luckily yesterday my son & daughter-in-law were here as it turned out to be a really busy day. I can usually handle things on my own with a few small glitchs, but without them here yesterday it would have been a real challenge.
Take carry everyone & keep posting, we do need to stick together and yes, we will somehow all get through this one day at a time.
Love To All,
DarlaDear Pauline,
I am so sharing the moods you are experiencing. The ups & downs and the tears just coming on. We seem to think we have control of things & then it all falls apart at a sudden thought or memory or something that is said or done. I also get those times of just wanting to be alone and then realize that I do need to get out or be with others. It is all so confusing and trying, isn’t it? I tend to isolate myself at times and think I need to be strong and deal with all of this on my own. It is hard to admit we need the help & support of others. I guess in a way we see it as a sign of weakness.
I agree, that keeping busy does seem to be the key. Today I was relatively busy all day & my son and daughter-in-law were here, so I actually had a pretty good day. Of course, I now am having trouble sleeping as I am here alone and all the thoughts of those last days have come back again to haunt me. I am trying to remember all the good times and the love we shared. It does help, but yes, it is all so sad. We shared everything with our husbands for so long & now it is hard to find joy in those things alone.
I don’t think there is a need to apologize for expressing our feelings. With what we have all been through, I think we deserve a little self pity, don’t you?
On a lighter note, I am glad that you atleast are experiencing good weather. Here it is unseasonably cold. It feels more like fall than the end of summer.
Take care everyone and know that I am thinking of all of you and hoping that everyone is doing OK.
Love & Hugs,
DarlaI too would like to welcome you and am glad you found the site, but am sorry you need to be here.
My husband was at a VA Hospital and was given very good care. Unfortunately by the time his symptoms presented it was already too advanced, but he was given good care and every test & treatment available under the circumstances. The hospital in Milwaukee also uses doctors from several other area hospitals and he had a lot of different doctors and opinions. One of the last doctors we worked with was from Froedert and had also worked at Mayo and was very helpful & knowledgable concerning CC. I know not everyone is happy with the VA but I felt my husband was well taken care of even if the results were not what we wanted or expected.
That said, no matter where treatment is given you do need to be your own advocate and go with your gut feelings. This cancer does not play fair. It is so unpredictable & treats everyone differently. You do need to keep a list of questions & concerns and make sure they are addressed.
Depression and anxiety are normal in these situations and he can be given medication for that. It does help. Being tired and not wanting to eat much are also common with CC.
As for drainage, I would ask the doctors why they aren’t doing it. I would also question them more about why they are treating him as they are.
Remember that we are all here to help in any way we can. This board is terrific. Everyone here knows & understands what it is like & are ready & willing to give you what knowledge we have along with comfort, support & even just to listen when you need to vent your feelings.
Take care & keep us updated as to how things are going.
Darla
Welcome Wendy,
I also am glad you found this site, but sorry you need to be here. I agree with Janet. My situation is much the same as hers. I found this site a few days after my husband passed on from this horrid disease. It also went very quickly for us. The information and the support & comfort I have gotten here is invaluable to me. You will find that everyone here is more than willing to share their thoughts, experiences and knowledge. Come back often with your questions, thoughts, fears or whatever. There is always someone ready & willing to help. Take care and hoping to hear from you often.
Darla
Louise, Your remarks did make me smile and we do need a little levity here now and again. It is also so true.
LuLu, I have also been told that 2 people can be exposed to identical circumstances and in some it will develop into cancer & in others it will not. I guess predisposition, body chemistry and maybe just the luck (or lack of) of the draw all plays into it. Apparently the possibility exsists in all of us and manfests in some and not others.
Barb,
I will be thinking of you and hoping for the best out come for your husband’s surgery next Tuesday. Good luck. Let us know how things are going.
Love,
DarlaJust to add a little more to the mix, thinking back, the only signs we had in the beginning were that he had some slight pain in his right leg that they could find no cause for and also tired alot which was not normal for him . He was never jaundiced until the last week even though most of his liver was compromised. He was gone in less than 2 months.
As for balance in our system, my 82 year old Dad was treated for an infection with high dose antibiotics and got c-diff. He keeps being treated & keeps getting it back and it was explained to us that the antibiotics are so strong that it kill off the good bacteria and that causes the c-diff. Now they have to treat him with more meds to try to get rid of it which is probably keeping everything out of balance. Our bodies are delicately balance and made to protect & heal itself. I sometimes feel that what we are all given to help & to cure us is actually making us sicker or killing us! Just my very unprofessional, uneducated opinion!
We thought my husband was healthy until the first symptoms presented. He was in Vietnam and other Asian countries (where CC is very prevelant) while in service in the late 60’s. (liver flukes or Agent Orange theory???). He also was on a very low dose cholesterol med (Zocor-1/2 of lowest dosage daily). No genetic link that we were aware of. Don’t know if this helps, but it’s my contribution!
LuLu,
I am so sorry for what you are going through. I know too well how hard all of these first are. It will be a year since Jim passed away very soon and it is all so hard to bear. This site and all of the great people on it have been a great comfort and support for me and I hope for you too.
I love your quotes and do relate to them. It says so much of how I feel. Take care LuLu. You are in my thoughts & prayers.
Love & Hugs,
Darla
