September 20, 2011 at 10:28 am #52859mlepp0416Participant
Have they tested for ammonnia levels? When my husband Tom, who has CC starts to act weird, talk weird, gets confused, etc. I get him to the doc as fast as I can and each time it’s been high ammonnia levels in the brain. The only way to get it to come down is by making him go to the bathroom on a regular basis.
The give him Geranlac in liquid form. 30 ML’s 2x a day does the trick and he is back to normal. If your wife is not having a bowel movement every day, her confusion and hallucinations may be being cause by high ammonia levels. Being bound up is a side effect of the pain killers but also causes high ammonia levels in the blood therefore affecting the brain. I’ve been through this with Tom at least 3 times in the past 9 months.
This is very serious and I suggest that you have her doc run a blood test and check her ammonia levels. Brain confusion is something you have to watch for with jaundice as well because if that level gets to high (bilirubin and ammonia) it can cause pernament brain damage.
Hugs to you both.
MargaretSeptember 18, 2011 at 1:04 pm #52858ronidinkesMember
I feel your suffering. Your wife is one, brave, strong lady! Sending tons of love and hugs your way.
There are some very good books for children on death: I have bought quite a few.
The one I really like is “The invisible String”, and the “the self help E
lf series are good too, they are geared towards kids.
You are a wonderful husband, and your children will keep you strong. My daughter has already told me: that when we look to the night sky, we will see nana in the stars, and that she will always live on in our hearts. My daughter keeps me strong for what is to come. She is my strength, funny, my 11 year old is doing better than I am!
Take each day as it comes, with smiles, laughters and holding hands.
RoniSeptember 18, 2011 at 12:57 pm #52857
Dear Adam, OMgoodness, in Phoenix??? At least she didn’t come when our temperature was in the hundreds? Its gorgeous now! I hope she is enjoying her trip and is quite the hero to take a trip so far. See? You may actually get your strength from her. You are so right in that we all just do our best.
When God solves my problems I have faith in his abilities, when he doesn’t solve my problems he has faith in my abilities!September 18, 2011 at 5:16 am #52856adamekParticipant
Thank you for all your wonderful responses. I am deeply touched that people would take the time to offer comfort in such a way. God bless you all.
Marion, thank you for the advice. The children issue is perhaps the one that occupies my mind the most and I am almost more afraid of their pain than I am of my own. I work with kids and hope that my experience will be of use. I will try to internalise the wise words of Dr Giles and I am sure they will help.
mn, thank you for your post. Sometimes I look at my wife and I think that I really have no idea what she is going through. I know what your dad’s going through and to an extent what you are going through.
Maria, thank you for your question. She has started on chemotherapy with a drug called 5FU mixed with another drug whose name escapes me. The stent issue has not arisen as the symptoms of blie duct blockage are relatively new.
Lainy, thank you for your advice. I think I understand what you mean about strength. Having children in this regard is helpful. I think if I only had to find strength for myself, I would just fall apart but having to be strong for the kids means that I will be. Sometimes I think my wife’s death will be my finest hour as friends have already been telling me how well I am doing. In a way this helps but also makes me feel terrible. How wretched would I be if I took pride in using this opportunity to show all our friends what a cool guy I am? I keep telling myself that this is not about me but fundamentally all human beings are egocentric. I think the answer is ‘just do your best’.
We do have some contact with the local hospice and havae been in touch recently. Unfortunately our palliative care nurse has been away on holiday for the last two weeks and gets back on Tuesday. I am sure that a serious conversation about ongoing care will take place this week. The funny thing is that we live in Leeds, England and she has been on holiday in Pheonix, Arizona! You may have walked past each other unknowingly.
CM, thank you for your kind words. We have both been well supported by cancer charities and have been on courses about coping strategies, so I know what you mean about breathing. I also find that coffee and cake helps.September 17, 2011 at 10:00 pm #52855
No offense taken. I just feel it is so important, this precious memory thing, as it personally got me through. I know sometimes I am repetitive but with new members coming on all the time (unfortunately) we have to repeat often. One more thing about it….I think it helps in not looking back and thinking what we may have, could have done as the Precious Memories can help with going forward not backward so I am glad for this discussion.September 17, 2011 at 8:15 pm #52854cmParticipant
I am sorry Lainy- I hadn’t even read your post properly. I was so taken by the first post.
Memories are so very important, it gets me through these days- I meant not to worry just because memories make themselves sometimes. Didn’t mean to contradict you at all.September 16, 2011 at 10:44 pm #52853
CM…guess I need to clarify myself. By making memories I don’t mean physical memories but just being there as you said makes for very deep loving memories of the richest kind. I look back on when Teddy was in Hospice and the love still hangs around the room when I think of how close we were. It is a depth of love that is unexplainable and in time it wipes away the bad memories leaving just the memory of how close 2 people can become. Priceless!September 16, 2011 at 10:34 pm #52852cmParticipant
Get support from medical team- no one should suffer pain or agititation with the excellent palliative care available. It is better knowing what the stage of the disease is rather than second guessing. Regardless- the truth is always easier to deal with.
Try not to worry about memories today- today just be with your wife and that will be enough for now. Stay close to her- you both need each other now.
I feel for you- If you are struggling take a couple of minutes and breathe in for 7 seconds and out for 11.
Stay in touch-
CSeptember 16, 2011 at 10:23 am #52851mariaParticipant
I was thinking about what has been done more then the GemCis-treatment? Stent to relieve jaundice/fluid build-up (leading to pain and confusion)?
MariaSeptember 16, 2011 at 3:14 am #52850
Dear Adam I am so very sorry about your wife and I know first hand how difficult this all must be for you. I am wondering if her ONC has mentioned calling in Hospice? They start coming out up to a year out from the prognosis. Comfort is the key word and they will provide everything to make her more comfortable. This is also the time to make some loving memories and to let her know that you all will be OK. I can’t anymore than Marion did, she did such an amazing job about the children. You will find the strength you need as the children will be depending on you, it’s weird how the strength just seems to happen. Please take care of yourself and please keep us posted.September 16, 2011 at 1:03 am #52849mnParticipant
I’m thinking of you and hoping for the best in your situation. Everybody on this board has been amazing. I have to say for a second I thought this could have been my dad posting this message as my mom was diagnosed the same time, with no chemos working. She has been struggling and they just drained her fluid…but a little less than half the amount that your wife had.
I am thinking about you and your young children. The social worker that just started coming to my moms house has helped her a lot. This all started through palliative care, which has been wonderful. They just started this week.September 16, 2011 at 1:02 am #52848marionsModerator
Dear Adam….I am so sorry to read your posting. This is such a difficult time for all. Your worries about your wifeSeptember 16, 2011 at 12:02 am #5656adamekParticipant
My wife was diagnosed with cholangiocarcinoma in November 2010. She had the standard treatment cisplatin/gemcitabine until February which had no effect. She has fought very bravely and we have explored all the medical and alternative possibilities that we have been able to find.
She has been relatively healthy until the end of August when fluid started to build up on her abdomen. They drained seven litres last week. She had become jaundiced and has become confused and even experienced hallucinations. She thinks that the confusion is a side effect of the painkillers but I think it might be the disease.
My thoughts have turned from treatment and length of survival to concerns about her suffering and the memories that our two young children will have of her. I used to pray for the end to come slowly, now I pray for the end to come quickly.
I have found reading some of the posts on your forums to be very moving and I have found some comfort in them.
Thank you for this.
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