Topic: Hello, first time visit here

Hello all. My name is liz, I am 21 yrs. old. My mother (age 54) was diagnosed with cholangiocarcinoma last august 05. She passed away this June 06. The doctors diagnosed her and said she would have 9-11 months to live, with chemotherapy. I can say my family ( sister- 25 yrs old, father 58-husband of 34 yrs.) has been to hell and back. I do not really know why I decided to write this. I am not one for sharing my life with the internet, but somthing about reading about all of the chemo drugs my mother was on, made me want to help others. It is what my mother would want.
           My mother was diagnosed when she was in stage four cancer. She had pretty much cold symtoms since the start of the summer and by august she turned jaundice. Thinking it was gall bladder disease my father and I took her to the emergency room. Following that came an emergency stent in her liver and ct scans, mri's etc... So then they told us what was going on and basically the doctor said the only thing he could tell me was that life wasn't fair.
          I'll tell you a little bit about my mother. The most organic, healthy woman ever! Always gave us fresh fruits and vegetables, she was an avid aromatherapist.. (she often found relief in sniffing lavender while on hospital visits. It has a calming effect.) So she exersized and never smoked or drank and this left us wondering why something so terrible could have happened!?!? She was so into wonderful food, and not being able to eat anything felt like such a punishment for her.
       That is neither here nor there. After the stent, they said there could be no surgery or a liver transplant, because half of her liver was not functioning, they said it would only spread onto a new liver therefore she could not get on the transplant list.
     Her oncologist told us about a clinical trial- lapatinib, and he was an agressive doctor and felt confident about it. So we tried it and I can just tell you knowing what I know now about chemotherapy, if i ever get diagnosed I would just say put me out of my misery now. I know that sounds terrible and I am not trying to depress anyone- but the side effects for her were 10x worse than we expected. She could not eat anything, everything made her vomit and the fatigue was unimaginable. She was on gemsar and xaliplatin (sp?) combined after lapatinib did not work. The xaliplatin side effects were the worst.   I remember sitting in her hospital room watching the chemo flow into her and feeling like this awful toxin was going into my mom.. while she slept (they gave her attivan before treatments so she would be relaxed. Her nausea and itchy skin were quite bad from  her treatment, and maybe from the progression of the cancer ( I dont want to completely blame the chemo) she could barely open her eyes. I was in college at the time spending my time out of class with her, lying with her, wathcing food network, and talking about my day and so forth.
     Maybe I am bouncing around. I apologize for that but I am actually happy to discuss my  feelings with people who might understand. I have not spoken to anyone who has lost an immediate family member from this type of cancer. It is very hard being 21 and lose a mother to cancer, people my age just do not know what to say. I would love to talk to anyone my age or if anyone older who could respond with somthing. I feel that if I could offer any advice, it would be hope for the best and prepare for the worst. That is what my family did and I think it worked for us. We are doing well now, we are strong from my mothers strength- because she was not afraid to die. She hated the toxins going into her body and she said she would rather have gone into the woods to die like a dog.. ha. But she did the chemo for her family. Her only fear was that we would be ok. I learned so much from this experience, and My wish now is to help others who may go through it. Thank you and hope to chat soon

Liz

Re: Hello, first time visit here

Liz, I am so very sorry for the loss of your mother. 21 is very young to lose a parent, especially watching one waste away from this insidious type of cancer.  We're all in this fight together and are hoping for better outcomes in the future.  By communicating with each other in this forum, we share the newest technologies with our stories, and one of these days we might find something that helps in the long run.   Right now, there just isn't a cure for CC except liver surgery which usually isn't an option by the time the cancer is caught.  All we can hope for is to extend the life of our loved one.  But then you eventually have to weigh quality against quantity.  After reading what you said about your mother's healthy lifestyle, I can imagine how hard it was for her to go through chemo and allow the drugs into her body, and I'm sure she only did it for the rest of you so she might be around a little bit longer with you.  It is good for you to share your experience with your mom, and you need something like this site to find others who can understand what you have gone through.  Everyone here understands your frustrations and your grief.  Just concentrate on the happy memories of your mom and offer help to others who reach out - that's the best legacy you can give your mom.

Best of luck to you in the future!
Kathy

3 (edited by ukmember Thu, 07 Sep 2006 09:10:17)

Re: Hello, first time visit here

You may have read on other posts that my husband refused chemo after his resection was aborted. He died a pain free death in May 06 six months after he was diagnosed. Like your mother he was very health conscious, ate well and exercised. 
See my post In Rememberance section.

I think it is a very difficult call whether to have chemo or not. If you read the blogs they show that for the terrible downsides of chemo there are also periods of remission for some people, where they are able to take breaks and enjoy some quality of life.  Young people are better able to withstand the chemo than older people and at 67 my husband didn't feel that -healthy though he was, his body could cope.

I have concluded that with chemo I would try it and if the side effects became too severe just stop it. We were warned (not by the oncologist but by the nurse-liaison)  that oxaliplatin has severe side effects and to decline it, whereas Gemsar is well tolerated. I think that my husband should have given it a chance while he moved to more holistic treatments.

I have a daughter Hannah who is 25, also very young to lose her dad. I will ask her to reply to your post as I have found that sharing helps.

Re: Hello, first time visit here

Hi Liz,

I was touched by your story.  Just wanted to say that it is shocking to look at the profiles on this website.  This cancer affects all ages (our youngest is 21), there are fiance's, newlyweds, brothers, sisters, friends and couples who have been together for 60 years. 

There is sadness in each situation and for my situation (my brother) the only satisfaction  I have been able to find is searching, researching and trying to give him the information I find that might give him some hope.  I don't know how long it will take, but we'll just keep on going.

Perhaps we can have a live chat with some of the younger people affected by this cancer - if you think it would be of benefit.

Stacie

Re: Hello, first time visit here

I don't know if all of you have read Chris Peterson's blog today but Dan has been given only a few days to a month.  We need to keep Chris, Dan and their entire family in our prayers.  The hurt and grief that they are going through is absolutely unbearable.  It has been four weeks today since I lost Sam and I cannot get through an hour without crying.  It is undescribable.  Please ask God to send them strength to handle the days ahead.  This site has been very comforting to me over the last year.  I could use your prayers also.
Betty Johnson

Re: Hello, first time visit here

Betty,

I did not know Sam, but I felt like as if I knew him.  I worried and prayed for him when you did not have updates.  I think I know exactly how you feel and what you went through, because my Mom passed away just seven weeks ago.  The experience you had with Sam is exactly what we went through with my Mom.  I wanted so much to email you, but I was going to my Mom's house everyday and you understand the rest.  I wanted to help my Mom everyday and spent any free time researching this rare cancer.   Only someone that has gone through this experience can really understand.   I think about my Mom everyday and am trying to figure what we can to honor her.   Sam reminds me of my Mom.   I cannot thank everyone enough for all their work on this site.  I wish I could help the people that are still going through this experience.  I look at this website all the time and pray for everyone.  I look forward to the foundation.  I wish their was something unique and elegant that symbolized this cancer because we need awareness for this cancer.

Re: Hello, first time visit here

Dan is in my prayers.

Re: Hello, first time visit here

You are so right; no one can understand this hurt until they have been through it.
I am so sorry about your Mom and hope that time will be a friend to both of us.
I wish I could turn the clock forward so that  I could speed up the process.  Sam was a very unique, special person and a special gift from God.  There is a really good article that the Tuscaloosa News published about him under www.samjohnsonfamily.blogspot.com.  He touched so many lives and will continue to do so.  I know that I will look back on my 34 years with Sam and be able to smile, laugh and enjoy life again someday.  I wish that for you also.  I saw that Dan passed away this morning at 7:33; my heart breaks into for Chris.  I wish I could do something; I can only ask God to give her His peace and I pray that for you and me also.
My prayers to all of you.
Betty

Re: Hello, first time visit here

I have to agree that  until you are going through this heartbreak it is hard for people to understand how awful it is.
I keep all of you on this site in my prayers as I have sat here many hours reading everything on this site, especially when I am not able to sleep. ( see ALAN in remembrance). I also agree about the healthy eating lifestyles. Here in england I have what is known as 3 allotments (big gardens) and have always, only done my own veg etc.  Therefor this was such a shock to us . Alan first visited the doctors surgery on 16/12/05 with a pain slightly below his left shoulder in his back. He was told he had pulled a tendon. He was given pain killing tablets. During the xmas period he complained of some acid in his throat. I told him he probably had a gallstone. On the 6th Jan. 06 he revisited the docs as he had started to get pain badly around the upper right (front) gall bladder area. He was given Gaviscon. He continued to visit the doctors surgery with acid in his throat and pain that was so bad at nights he had to rock himself to ease it. He still managed to work during the day. I told him to visit our local hospital on the 12th Jan as an emergency patient at night. He was duly x-rayed and told he was constipated. He was angry as he had been to the toilet o.k. erlier that evening. In total he visited the doctors 6 times during January. This is someone who for the whole of his life had only ever had chicken pox and the mumps plus a few stitches on the odd occasion. I begged him to go and pay to see someone, his response was why should I pay to see the same people that I am visiting now. I told him to tell the doctor that his gall bladder had gone wrong and my husband who required another prescription also told her that alan was very very ill. The response was that she could not find anything seriously  wrong with him.
Finally, I told him that I would call them if he did not go back to another hospital, and we, alan and I  both visited the hospital as an emergency patient. That was on the 15th of February. Alan had managed to work up until the 6th of feb. After being really messed about and diagnosed with  gall bladder problems and various other things we were told on the 1st of March 06 that it was almost certain that he had C.C. There were lots of tests done that I expect most of you know about and finally two attempts to put a metal stent in to drain the bile. All of this took until the 3rd week in march.Alan had been told he may have some chemotherapy for 6 weeks but if there was no change this would be stopped. It was discussed with alan that there would be a combination in the form of ECF. This was Epirubin, Cisplatin and 5FU. There would have been a Hickman line inserted and one drug seperately each week .i.e.3 weeks and one week free. It then became a bank holiday and alan wished to go to spain to see his beloved motorcycle racing with 3 of his friends. He was advised to go as it would not make any difference as the line would not be fitted that week. He was still going to the bank etc until the 14th April but losing weight  so rapidly it was unbelievable. On our second visit to the oncology unit we were told that it would not be advisable for him to have the chemo. He was having difficulty eating or even keeping any food in his body. He was then offered palliative care. I felt so helpless as there really wasn't anything that could help alan. He never once showed anger but only begged me not to let him lie at home for long.  He did not wish to be messed about and at the end passed away so very peaceful in his sleep. I am now so pleased that both alan and I only knew for about 7 weeks that he was going to die. He did this with such great courage and dignity that we have now raised so far

U.K.Member

Re: Hello, first time visit here

It makes me feel good to read words from both Betty and Teresa.  I do not know how to describe how I feel sometimes, but you both understand.  The only thing that bothers me is that sometimes I feel so angry.  My mom not once complained or got angry.  I do not know how she remained so posiitive with all her pain.   I understand that I should not be angry.   I do not want people to forget all the special people that have passed away from this terrible cancer.  I just want to do something and I look forward to the foundation.  I do not know if you guys feel the same way, but I want to do something special for these people and I just do not know what to do in addition to helping with the foundation.  Does anyone have any ideas, because I do not want people to forget my Mom or Sam or Dan?

Re: Hello, first time visit here

Dear Liz,
I was very sorry to read about your Mum. I wish you and your family well.
I was also sad to read on about other people who have expereinced recent deaths because of this cancer. I send my love to you all.