mlepp0416
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I experienced somewhat of the same issues when my husband passed. Now I decide WHO gets WHAT and WHEN they get it. When I decide, that’s when!
You should be able to keep your stuff until you are ready! Or else, get a will made, leaving things to whomever you want to!
Prayers coming your way from Wisconsin!
Hugs,
MargaretAnp:
So sorry to hear about the loss of you beloved Father. The only thing worse in my mind is loosing your spouse. I lost my father when I was in my twenties. I lost my mother years later and was with both of them when they passed. Gradually the memories and details of a parents dying minutes will fade away and you the happy memories with take over. You can keep your children’s Grandfather alive in their minds and hearts – it is only when you stop speaking about your dad and stop remembering him that he is really gone.
I just lost my husband to CC on 11/20/2011 and was with him when he passed. I felt panic because I did not want him to leave and I talked to him and told him it was OK, that I would be OK and he needed to go to his eternal rest with Jesus. As he took his last breath, I held him in my arms and told him that I loved him. My eldest daughter and my youngest daughter were both with me. His two children did not want to be there.
I still have images of his passing, and part of it bothers me a lot, but knowing that his quality of life was not anywhere near where he wanted it, that he is no longer suffering, no pain, no chemo, no radiation, no tubes, needles, blood work, no doctors poking and prodding…that he is finally at peace erases those images and instead I have pictures of him that I have on my desk and I spend a lot of time in his recliner, remembering him in happier times.
We have a 2 1/2 year old grandson who was named after his Papa. Thomas. About 10 minutes after Tom passed, my daughter was getting him down for bed, and she took him into the room where Tom was and had lil Tom give Papa a goodnight kiss. Then she stepped back and lil Tommy looked up at the ceiling and got a great big smile and said “Papa” then raised his little hand and waved and said “Buh bye Papa”.
My daughter feels very said that lil Tommy will not ‘know’ Papa and feels he is too young to remember him. I gave her some pictures of Papa and every night as they say his prayers, they ask Jesus to keep Papa safe and give Papa Kisses. She places Papa picture on his bedside chair and if his mama forgets he says “Kizz Papa”? We talk about Papa to him and with pictures (we have tons of pics with both Tom’s) we will keep Papa’s memory alive for Lil Tommy.
You can do the same for your children. Keep their Grandfather’s pictures where they can see him, talk about him, tell them stories of their Grandfather from when you were a child, how he interacted with them when they were born, etc.
Make them each a memory book filled with pictures of them with their grandfather! There are so many ways you can keep their grandfather alive in their minds and hearts.
I feel your pain and trust me, you will have good days and bad days, and sometimes it’s the smallest thing that will have you crying! Don’t be afraid to talk about your feeling of loss. Go seek a grief counselor if necessary.
Hugs coming your way from Wisconsin.
Margaret
Lost soul: You need to avoid Wheat at all costs. Shopping for Gluten Free foods is hard, but most of the major food stores now have Gluten free sections! Avoid any food that you have a reaction to. This probably means giving up fast food places and resturants. But there are gluten free resturants in some major cities.
I do not have celiac disease, but do have Colitis (lucky me) and my mom had it as well. I learned very quickly to avoid foods that reacted negatively to my body. Just recently I learned that the medication that I’d been taking for colitis was making it worse instead of helping it! After three weeks of issues I had a colonoscopy and my doc immediately took me off the medication and put me on a MUCH cheaper OTC (Over the counter) med which works wonders when I have a flare up. And with colitis STRESS is a big factor.
In all the reading I have done in the past 4 years when my husband was fighting CC I never once seen a connection in the liturature regarding this type connection (celiac disease and CC).
Sorry I don’t have more to offer, but I do know that people with Colitis have a greater chance of getting CC then those who do not have it. (Lucky me again).
In any case, keep us posted on what is happening. Do some research on the internet. You may be amazed at what you find.
Hugs,
MargaretLisa:
Welcome to the site that no one really wants to join! But now that you are here, you will find that you have found the best site for support. We will become like a part of your family.
You can post any question, thought, rant and rave to your hearts content.
How old are you? Where are you getting treatment? Where are you from? Tell us a bit more about yourself.
Again, welcome to our family!
Margaret
Dawn: To Chemo or not to chemo…in the end I WISH my husband had decided to not do the chemo. He wanted so badly to continue living. Funny thing was that we had already discussed ‘no more chemo’. He was already down to 105lbs and I did not think he was strong enough. However when they discovered another tumor (aggressive tumor that tripled in size in under 3 months) he decided to go with chemo.
They put him on 5-FU which for whatever reason was extremly hard on him. He was sick for every week that he was on it (3 weeks). They cancelled the 4 round, and by the next week he was in the hospital with failing kidneys. He came home on thursday, started Hospice and was gone on Sunday 11/20/2011.
I can’t help but think that he could have had a bit more time if he had not done the last chemo. He did not have a ‘quality’ of life during or after that chemo.
But, it’s a personal choice one must make and it also depends on other factors. If T is under 115lbs and is already in a weakened condition, then I personally would say NO. But it T is at a healthy weight, has no other conditions, then it can’t really hurt to try. It may gain some time, but it may not. In Tom’s case I feel that it shortened his time here on earth.
Go with God,
MargaretSide note: with the Lactulose you want to be a bit careful. You can adjust it down a bit when necessary. You don’t want Ben to have loose watery stools, you just want to make sure he is ‘going’ every day. Any type of pain medication can cause constipation, which in turn causes the ammonia levels to start climbing.
Since I have ummm, 6 bottles of it here at home, I have been using it when I find myself w/a bit of constipation. It works quite well!
Tom:
I’ve so happy that I was able to give you that advice about the Ammonia levels in the brain. I’m certain that Ben was not so excited about having the runs, but a man has to .do what a man has to do!
Tom experienced this several times during his 3 year 8 month battle with CC. As soon as I realized that he was talking weird, acting SO not normal, it was off to the doc’s for blood work. He kept talking about me having to buy a birthday cake and a new bumper for his truck. Just was not his normal self and I knew something was wrong. Once he got on the meds to cause the ‘runs’ his ammonia levels returned to normal and he was find.
His doc’s need to check his ammonia level EVERY time Ben goes to the doctor! It’s something that they need to keep an eye on. So glad to have been of assistance. Now that my Tom is gone (he passed on 10/20/2011) I will continue to try and be of assistance on this forum whenever I can. I learned so much more about this disease then I ever wanted to know.
My thoughts and prayers will be coming Ben’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretThank you everyone for your wonderful posts. They all mean so much to me.
Jessiesgirl: Hang in there, it will get easier in time. Yes, there are times when the pain seems to be unbearable, but your mom would want you to live your life to the fullest, to do the very best that you can do with your life, achieve your dreams! Hold your memories of your mom close to your heart and keep her alive in your memories. She will ONLY be forgotten when no one mentions her name any more!
I’ve finally received the Life Insurance check from my employer and paid off the funeral today, now have to figure out all the medical bills and work with my employer to see if they will WAIVE the ‘new’ $2,400 deductible that they put on my individual policy AFTER meeting the $2,400 family deductible and the family $3,000 out of pocket! My complaint is that since I already met everything, just because my husband passed away and was removed from the policy, I should not be penalized because he passed away, and I feel that my employer is discriminating against ME! We’ll see what happens.
Living my NEW NORMAL!
Hugs and love to everyone.
MargaretYEAH! That’s the kind of news I needed to hear! I’m still praying hard for Lauren and will keep doing so!
That is awesome news Pam, I’m so happy for you Lauren!
HUGS,
MargaretAdditional note: Tom also had Gemzar/Cisplation for about 5 months, that was followed by 5-FU (which I did not think he was strong enough to handle as he’d gone downhill and was only 105 lbs) He only had 3 rounds of 5-FU, they cancelled the 4th round and by the time he was supposed to have the next round he was in the hospital (Monday to Thursday) started Hospice on Friday and passed away on Sunday. It happened quickly, he did not suffer thanks to liquid morphine and he passed away at home – in my arms, just where he wanted to be when he passed.
In my husbands case, he had NO symptoms. But because he was on a ‘statin’ drug, his doc did blood tests every 3 months. In Jan ’08 his tests were normal, in Mar ’08 his alk phosphate level was 10x elevated. He underwent an ERCP and they found a narrowing or stricture in the left lobe of the liver, the doc did a brushing, inserted a stent and the brushing when to pathology and came back positive for Cholangiocarcinoma. After a 3 yr, 8 month battle (successful liver resection, 18 good months, started turning yellow, new tumor, radiation & chemo (Xleoda), that tumor was dead. Three months later, new tumor discovered, aggressive growth tripled in size w/i 3 months – his kidneys started to fail and 7 days later he passed on 11/20/11)
Demand an ERCP, have them do a liver panel and get the Alk Phophaste level checked, also Tumor Markers! It could save your life, or at least tell for sure if you have Cholangiocarcinoma.
Go with God,
Hugs,
MargaretI read somewhere that ‘chemo brain’ can last up to a year after receiving chemo.
Sorry for the bad news about the bile ‘sac’.
Hugs,
MargaretHans:
I know what you are going through, I just lost my husband to CC on 11/20/2011 and no one knows what pain we go through until they experience it themselves. Hang in there. My pain is still raw and I’m sure it will get better with time, I never thought I’d be a widow at age 59, but it’s something that I have to deal with.The date of birth and the date of death really does not have a lot of meaning, but the DASH between those dates has a lot of meaning. It represents what that person did during their life and that is what counts.
Hugs,
Margaret
