My Dad was diagnosed 3 weeks ago......

yvonne · New User Joined: 19 May 2005 Posts: 8

It's amazing how quickly I have learned the terms involved with Pancreatic Cancer. We as a family have gone thru so many emotions. Especially in the last week. He went from no symptoms, to many all within one week. He is having a hard time eating, the pain meds (vicodin) is giving him severe constipation..they have since moved him to Morphine, the pain has gotten so severe. He also has aches in his lower legs has anyone ever dealt with this? I'm just looking for any solution that can help him thru this.

Since this has all happened so suddenly, we have opted to have a second opinion @ Stanford Med center....however I worry that if there are know options for curing this cancer are we best to start him on chemo and try to prolong his life? We know he is Stage 4, It has moved to his liver. I'm also so scared of chemo, I don't want the end of my fathers life to be so sick. What are other experiences out there? I know you know my pain. What advice can you give me in this early stage? It's only been three weeks and each day seems to bring something new.

Thank-you

Wish_I_Was_An_Angel · New User Joined: 23 Jun 2005 Posts: 2 Location: UK

Hi Yvonne, my dad was also diagnosed around 3 weeks ago.....after months of being treated for a stomach ulcer followed by some scans and tests. Pancreatic cancer. Endoscopy followed and we were told there was also a stomach ulcer which we are now told doesnt exist, the cancer is also in his stomach and they now dont know where it originated.

We have been told its not possible to operate, the tumour is quite large (10x8x6cm) and involves major blood vessels. A tricky case apparently. My dad has been in hopsital for the last week to try and build him up a little, he's been struggling to eat, constant hiccups and pain while/after eating etc and so has lost weight fairly rapidly. Hopefully gettin home tomorrow.

Finally spoke to an oncologist today who has told him he will have a course of chemotherapy, light though. I dont really know what this means in the short or indeed long term........i know im really just telling a story here but i had to get it down, i have no experience with cancer at all, all very new to me, no-one in the family has ever suffered from it previously so i feel slightly at a loss. I hope someone here will understand and maybe over some advice, guidance, etc.....it really would be appreciated. Thank you.

yvonne · New User Joined: 19 May 2005 Posts: 8

Thanks so much for your reply. My Dad died two weeks ago. He lasted 32 days. 32 of the most precious days of my life. The first week we found cancer, the second determined It was in fact Pancreatic. The third brought chemo, That week we discovered Dad had cancer not only in his Pancreas and liver but now in his small colon which had a tumor that was pushing into his stomache causing an ulcer which made him bleed internal . It was in that week we found out there was not much more they could do for him. I'm one of four children, I had to make the decision to call in hospice, It is the hardest thing I have ever had to do. We kids all took turns with Dad at home I had sun-tuesday. (week four).
He told me as I left tuesday he was ready to go, he died that sunday after we all had our days with him.

If there is one thing I can share with you It would be for you to make each day special. Dad and I talked about the cancer and about life. It was so important for me to know he was not angry or scared or that he wanted to continue living. He accepted his illness and was greatful for the life he had for 63 years. I am not a religious person but I saw something come over my father that helped him thru this. He was able to say his goodbyes to us all. Left all the necessary papers we needed for mom. He did not go until he knew we would be ok and stay together as a family thru this tragedy. As I've struggled since Dads death and have asked the question "Why? Why did It have to be the worst cancer! Why?" I remembered something Dad had said to me, His brother struggled thru bone cancer 6 years, his friend lymphoma 6 years. He was by there side thru It all. He said after seeing them thru there illness he would not want to go thru years of treatments and suffering, he wanted It to be quick for him when his time came. So I realized Dad got what he wanted, If he had to be sick at least it was on his terms. He died with such dignity and I am so proud of him.

Stay strong, cry when you need to. Please just know that there is a family in California that knows what you are going thru and will be thinking of you and will keep you in our prayers. It's only been two weeks and I am very sad. But I know Dad is with me, I feel him every moment.....he's helping me help mom, my brothers, and most important myself... we will get thru this for him.

Wish_I_Was_An_Angel · New User Joined: 23 Jun 2005 Posts: 2 Location: UK

Hi Yvonne, so sorry to hear that you lost your dad. Your words are ringing true.
Dad was supposed to get home form the hospital on firday sometime, they had only taken him in to help build him up a little bit. But Thurs he spoke to the oncologist who pretty much told him he will soon start to get light chemo each week as there is no point giving him a heavy dose to make him really sick when its not going to help him in the long run, ie. terminal! so very very sad.

then friday morning he had a setback, shortly after waking in the hospital says he felt like he was having a hear attack, turns out to be a gastric perferation?! as the cancer is also in his stomach. Nothing looks very good at the moment. I feel his treatment for the gastric perf is helping him to improve but at the end of the day how much will he improve now as when the perf. has healed he still has the cancer to contend with......i know i'm losing him slowly but i cant bear it.....

yvonne · New User Joined: 19 May 2005 Posts: 8

I hear so much love for your father in your words. I'm so sorry that you hurt. I understand your fear and defiantly feel your pain. With my Dad It seemed we never caught a break, we'd get ahead of the illness one day only to fall farther back the next. What I have come to realize is that every procedure he had kept him out of pain and for my family that was important. Based on the location of the Pancreas, the stomache is usually affected as well as liver and sometimes small colon. We felt such a connection with Dad's oncologist and relied on her to answer all questions not matter how simple they seemed. It is scary, and moves fast...I suggest ask any question you may have, nothing would be to simple. The more information you have the less scary It becomes. I wish I had some magic words for you to ease your pain and fear, But I'm trying to find those words for myself. When my father had his chemo, we were told It was not something to cure or control, but to prolong his life. The one treatment he had of Gemzar, he had no side effects from the chemo treatment....It was his internal bleeding that caused the problem and that was a seperate issue. I believe in miracles, and I believe your father could surprise you and come thru this especially bad time. Yes he will still have the cancer but maybe, just maybe with the help of chemo he can still have more time on this earth with you. Take Care......

Nadia

Hi Yvonne,

So sorry for your loss. Seems we share a similar story. I'm a new user and posted "My dad has metastatic pancreatic cancer." on Aug. 3.

My dad was diagnosed with cancer the first week (doctor said he found a lesion in his pancreas and three in his liver), it was confirmed that it is indeed metastaic pancreatic cancer (with liver metastases...it's true what you said about learning all this cancer terminology) the third week, and chemo began last Friday, in the fifth week.

I can't believe how the pain just kicked in upon diagnosis. For a few days, I kept telling myself that it was all psychological...that a lot of it is mind over matter. But seeing my father cry in agony made me realize that the pain is real. I'm 34 yrs old and have never seen him cry.

It's all progressing so quickly. He has already lost 10 lbs. His appetite has decreased. He doesn't even have the strength to go for a little walk (after a few feet, he's pretty much out of breath and too exhausted).

He has no jaundice. Was your dad hit with this side efect? Is this the first sign that the 'end' is approaching?

When he's having a good day, a rarity now, I have more hope that his life will be prolonged. He doesn't LOOK sick, Yvonne! But when he's having a really bad day, I almost want God to take him right away, so that he doesn't have to endure anymore pain. My dad's wish is to 'go' with a heart attack. Bang! A quick and hopefully painless end to this nightmare.

Yesterday, my mom began giving him insulin injections (4x/day). He's diabetic and already taking meds to control the blood sugar. But with the pre-chemo (one of the ingredients is a steroid which raises blood sugar), his sugar level has soared. And last night, he had fever. If his temp. doesn't go down by this Friday, the chemo will have to be postponed. Is this a side effect from chemo? Or is it just tumor fever? With each passing day, I anticipate a new side effect, another complication. I don't know what else to expect. I want to be prepared...for the worst. But will I ever be ready for what is yet to come? Surprisingly, I'm holding up pretty well. Do I have a choice? I have to stay strong and positive and try to enjoy every moment with my dad.

They say that when someone is ill, it is very hard on those who must sit around and helplessly watch them endure all that suffering. And I agree. But I can't even begin to imagine what my dad is going thru...what are his thoughts?...is he afraid?...is the pain so unbearable that he can no longer put up the good fight? My focus right now is to make sure he's given the proper med. to control the pain and to make him feel as comfortable as possible.

Thanks for listening and I hope you're ok.

Take care,

Nadia

yvonne · New User Joined: 19 May 2005 Posts: 8

Dear Nadia,
I'm so sorry for all you are going through. It's not easy. My Dad was in a lot of pain as well. He was on Morphine the first three weeks and on the Morphine drip the last. Every cancer patient is different. My Dad never lost much weight. He lost a total of about 3-4lbs. He never got Jaundice as well. I had the same experience as you with watching my Dad in pain. He would have tears roll down his cheeks when It got to hard to take. That was so hard to see. He had no side affects to his 1 chemo treatment which was Gemzar. However that night after the treatment as I checked in on him, he asked me to rub his feet. for some reason Dad's feet ached quite a bit, there was never any explanation for this. As I rubbed them I noticed his feet were ice cold. Seems like within seconds he began to shiver...I checked his temp and he was at 100.7. At 101.5 you are suppose to call Med advice but since his symptoms were so bad I decided to call then and there. Once we got dad to the ER It became clear something else was wrong. He had internal bleeding from a new tumor that was in his small colon and was pushing up against his stomache causeing an ulcer. they weren't sure they could stop the bleeding. I think i came as close to a nervous breakdown that day as I ever will. My brother, mother and I both voiced we wish It would just take him...It was to hard to see him suffer, even though he never complained once. Fortunately his body stopped the bleeding. He lost alot of blood, most of It passed thru his stool. Something that hurts me just thinking about It. My Dad didnot have many side effects partly because Dr's know there isn't to much they can do to treat so they just manage pain. We were told from the morphine he might forget us, not be able to speak, but we never experienced that. Dad stayed alert thru out his 32 day Illness only on the last day did he slip into a mild coma which is common before death. He died with my mom next to him telling him we all loved him and that It was ok to go. He took one last breath and "fell asleep". Very peaceful. We had him at home.

I did not have enough time with Dad to learn all there is to know about Pancreatic Cancer. My Dad had so much experience with Cancer that he wanted his end to be fast. He had lost so many loved ones thru the years. Him and I had a very frank talk. I needed to know he wasn't angry, scared, or wanted to continue living..even if that meant being sick. He was ready to go. he told me his only fear was for my mom and us kids, he knew It would be difficult to survive. I urge you as hard as It is to have this talk with your Dad. It has helped me with my grief, and my brothers that couldn't do It ask me now how did he feel about death, it's so important for closure. My Dad let me know he was ready to let go. He was not happy with us having to tend to his needs especially his personal he was to proud a man. My last day with him he told me I just want this to end. I knew he was telling me It was soon to be over. It's so important for the patient to have someone they can talk to about what they are going thru. I was there for Dad and I have no regrets.

My family has entered a new stage of the Illness. Dealing with the loss. I cry everyday. I am so sad It's a constant in my life now. I know at somepoint It will get better but for now I have to be at this place. Just know you don't need to be stronge all the time. What you are going thru is hard. reach out for help like this forum. And please contact me whenever you need to....I do understand.

My best to you and your family,
Yvonne

Nadia

Yvonne,

Sorry for not replying sooner. There are days when I just don't have the strength to "talk"...

I can't even begin to imagine what you're going thru. I don't even know what to say to help ease your pain. Like you said, it will get better...and as the saying goes, "Time heals all wounds." Wherever you are, I hope you have the much needed support during this grieving period.

I don't know if I'm ready to have that talk with my dad. I believe deep down he knows what the prognosis is, but there are days when he talks about doing things in a more distant future. Is he not letting on that he knows the 'outcome' just to protect us? I'm afraid to bring up death for fear of him losing hope. I don't know how to approach this topic without scaring him. Perhaps he's not ready to talk about it because he believes that everything will be ok....that the chemo will save him. I guess we will both know when the time is right.

He had his 2nd treatment last Friday (Gemzar) and again no nausea. His feet and ankles have been swollen for 3 days now. He's extremely tired and the pain is getting worse. A few days ago, I came very close to bringing him to the ER. He was experiencing so much pain in his left arm...he said that it felt as though someone was trying to dismember it. When we told the dr and the oncology nurse about these symptoms, they couldn't even give us a straight answer as to whether or not they are related to the chemo. or the cancer itself. I'm telling you, thank God for the internet! Right now he's taking Percocet (pain killer). Do you know of any other med.?

I know every case is different, but can you tell me, Yvonne, will things ever get better? I mean, if the pain is controlled (or maintained to a tolerable degree), won't he be more comfortable...will it be possible for him to 'go' peacefully? Or is it true when I hear people say that things will only get worse?

Thanks for your kind words and please be in touch.

Nadia

yvonne · New User Joined: 19 May 2005 Posts: 8

Dear Nadia,
Thanks for your e-mail. I understand the not wanting to talk at times. You get so emotionally drained that It is hard to have to keep sharing your story at times. Sounds like the experience your Father is having with swollen ankles and feet, is similar to what my Dad experienced. His also ached, there was never any explanation for this..They were also very hard. Strangely enough after he was diagnosed with the internal bleeding all that went away.

My Dad went from Vicodin to Morphine for his pain management. He lasted on Vicodin for about 1 1/2 weeks. The pain began to breakthrough with Vicodin so that's when we went to morphine a powerful narcotic. He seemed to do well with the morphine, It wasn't until that last week that we had to bring in the morphine drip because at that point he was now getting breakthrough pain all the time. My fathers tumors were also growing rapidly which we were told is very painful, because alot of times there touching nerves. The problem that came with these pain meds was severe constipation. Which we had a hard time controlling for Dad. He was very uncomfortable for the first 2 1/2 weeks. We are fortunate to have a family friend who is a Oncologist and we turned to him quite a bit with questions from pain to constipation to what will happen next. Most hospitals will have a pain advice nurse/Dr. on hand, If you feel like your fathers pain isn't being managed properly you may want to look into that.

I don't really know what to tell you about what happens next. I can only share with you my experience. My Dad like yours, the day before we were to leave the hospital for hospice care asked his oncologist If she could try one more chemo. It broke our heart that he wanted to keep fighting. But we do realize that was also one of those rare good days which happened about once a week..he even wanted chicken that day! His oncologist was great she told him he could call early the next week and If he still wanted chemo she would fit him in. he never asked to make that call. I know Dad wanted to live he has grandchildren, he has us kids and most important to him was mom. But he was in full acceptance of his death as well. He wanted us to know he would fight till the end and I believe that is what he did but he just got so tired. He had 32 days in which he discovered his cancer, fought , accepted, and then tired to prepare us for It and I believe he did It all perfectly with dignity.

You asked about the end. As I mentioned before we were prepared for the worst. We were told so many scary things that would happen. That was not our experience. Dad slipped into a coma on Saturday, he also began the gruggling which is a sign the end is near. My cousin and brother figured out a way to postion him to were It wasn't so bad that he could choke. He lasted like this for 9-10 hours. He began to get cold. and Sunday morning he took his last breath cried his last tear and fell asleep. It was very peaceful. Trust me Nadia what ever your experience is It will be ok. Also keep in mind he's trying to make this experience easier for you even though he may not be voiceing that. Experiencing death with someone can be a peaceful thing know matter what the
end is like. There really is a peace that comes to you as you are passing I've seen It with my Dad and my Dad mentioned seeing It with his cousin and brother. Whatever your out come It will be ok. Listen to your heart, It will never fail you. I'm sure he has comfort just knowing your there. Sometimes words never have to be spoken, Its something in your heart.

Keep in contact, your in my thoughts and prayers. We both hurt right now because we love our Dad. I'm 36 and can't imagine my life without him but yet I am faced with that now and also carrying for my mom. I feel greatful my Dad made It to my wedding and did not know he was sick ( he died 3 months to the day after my wedding) and that he did not suffer long. These are things that are getting me thru. My dad was proud and had dignity and was known for taking in a stray dog, offering work to someone who needed It, and just always finding the best in every situation. I asked him once If he ever got depressed and he said to me " Why get depressed? I don't have time for that." and that Nadia was my father and I now long to be that.

Take Care ,
Yvonne

Mae · Regular Joined: 28 Jul 2005 Posts: 22

yvonne,
Just want to talk to someone who understnds some of what is going on. My husband has been very short of breath last night and today. Called Dr and got in to see him. My husband had plural effussion in left lung. The hosp remvoed 800cc of fluid from his left lung today. He feels better now and can breath Exclamation

Sure is tough watching this slide down but I guess I should be tankful for what we have. He still feels like geting out and working some most days. He is losing wt (has lost about 25lbs) but his outlook is still good.. I fear for the future. It helps to talk to someone who knows.

mae

Lauren · New User Joined: 01 Jul 2005 Posts: 3

Mae,

My father is also experiencing fluid in his lungs. a nurse gave him some breathing exercises and these together with brief periods of walking, are thought to lessen the amount o flid or slow down it's build-up. He too will have to get this drained off at some point. I am hearing a hoarser voice quality now. Is this part of the fluid build-up or the increasing weakness that comes from weight loss and muscle wasting? any ideas?

Yvonne and Nadia,

I just got on again after a time and read your dialogue over the last 6 weeks with heartfelt tears running down my face. I know the frustration of wanting answers about what will be next (I peviously posted 'what happens in the last (6) months'). It seems every case is so different. My friend's father died Friday after being diagnosed at Christmas. He only tolerated milk for many weeks, spent hours in bed, and slipped within 4 hours of the doctor examining him and giving him til september to live. What a shock o the family.

I will be seeing my Dad tomorrow after being away for two weeks. I'll share again next week.

Thinking of you all in my heart and my thoughts. Thankyou for this forum!
Lauren

Mae · Regular Joined: 28 Jul 2005 Posts: 22

Yvonne& Nadia

I am sorry it has taken so long to reply to your post, but sometimes I am just so tired. My husband was diagnoised in may of 2005. Most days it still seams so unreal. I walk around in a fog most of the time, doing what I must but not really here. I am 51 yrs old and am at loss on how to deal with this. I am pulled in so many ways. My husband and I have had 20 wounderful years together, both married before. We have had so many good years, I can not see myself without him. He has four kids and I have three. They are all very supportive. Thankfuly we have great friends also who call and try to help. However I am so tired of people saying how can we help you. There is no help. I must put on a happy face and go on for my husband. My husband is doing good comparied to what I have read and I get ashamed of myself sometimes for getting down. His outlook is good, he still works some every day. He has lost 25lbs and last week they took of 800 cc of fluid of his lung. But the next day he was back to work. He wants to get everything ready for me so I do not have anything to worry about. Before his diagnosis I started taking flying lessions and he wants me to continue to do so. he is also a pilot and he wants us to be able to fly together on short trips so I am working hard on the lessions. But some days I think I cant take any more stress. I know this sounds so selfish. I watch him get weaker and weaker and more and more short of breath and lose more and more weight every day. It is so hard not to scream watching someone who is the love of your life slip away inch by inch min by min. I have so litlte to complain about right now. But I know the furture is not good and when I am here alone in my house (rarely) I think how quiet it is and think one day he will not come in, how then will I carry on?l

Nadia

Mae,

Just read about your husband. I'm so sorry you have to go thru this. You sound like a wonderful couple...totally madly in love! You've got the right attitude, Mae, keep smiling and put on that happy face. Someone recently told me that I should not mourn my father twice...he is here, alive, so I must enjoy every moment with him NOW and not waste my time crying.

Take care and all my best,

Nadia

Anonymous · Guest

WOW...profound statement..."do not mourn my father twice"...

thanks SO much Nadia!

Mae · Regular Joined: 28 Jul 2005 Posts: 22

Nadia&Yvonne

Thank God for this forum. It helps so much to talk with people who understand. I agree Nadia Don't morn twice! Some days it is so hard. But my husband and I both agree that if you cry all the time you lose what time you have.
Today is not a good day for us. We went to Dr. yesterday and started on the new cancer drugs E.G.F.R. and oxaloplatin some ugly side effects. Also the Dr. told my husband to get his things in order. His lungs are filling up again with fluid (plural effussion) The office will notify us for a time either thr. or fri. to drain. Then we see the Dr next Tue for chest X ray to see how much fluid has accumulated. We will probabley end up with a drainage tube so we can drain it at home. It was a pertty deperssing day. But we carry on and keep smiling and talking about things we want to do.(even though we both know we will never get to) I thank you for your kindness it helps to talk.
Jess

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