Advice for a son who wants to do the best that he can...

[kbosz]

Hello All-

I've read several of the posts on this forum, and many have hit very close to home. My sincerest positive thoughts go out to everyone touched by this illness.

I'm a newcomer on this path. My father, 63, told me last night that he had been diagnosed with pancreatic cancer. Since then, I have been overwhelmed by feelings and emotions that, I'm sad to say, many of you have also experienced. He has not been given a timeline yet, but he is experiencing abdominal pain and his CT scan suggested the pancreas and liver might be affected. I'm not optimistic that further news will be good.

For myself, I am truly blessed to have a loving wife, and two beautiful children (stepdaughter 12, and my son, 16 months).

The reason that I'm posting is that I am looking for any advice on what I can do to help both my dad and my mom (who is shouldering a burden I wouldn't wish on anyone). They live locally, so I plan on visiting frequently, and spending as much quality time as I can with my father. I also plan on looking after my mother, as she will need to keep up her own strength. I do not have any other siblings. If anyone out there can offer any advice, tips, things that they found brought comfort to their loved ones, I would be so dearly grateful.

My father is in good spirits...his usual gallows humor is in good form. My mother is coping as best she can, I know that she will fight through and do what needs to be done. I will support them both. My biggest concern...the thing that breaks me up every time...is my son. He is only 16 months old. He has developed a bond with my father that brought tears to my eyes BEFORE this diagnosis. Now, he will likely grow up not remembering his grandad. I know that this is the thing that is cutting at my father's heartstrings as well.

We will take lots of photos and videos, but I'm worried that my dad will still be a stranger to my son. I've asked my dad to give my son something personal...a letter, a photo, a momento. I've asked my dad to seal whatever he wishes to give my son so that I can give it to him when he is old enough to understand. This way, although the giving and receipt may be seperated by years, there is no middle-man, this will be something from my father, given to my son.

If anyone can offer any other ideas to help us all cope with this aspect of the disease, I'd love to hear them.

Thanks for taking the time to read. If you've read this far, chances are that you have been touched by this disease as well. Although, as I said, I'm new to this experience, a few things have become clear: taking one day at a time, and drawing the good out of every moment is most important.

Thanks in advance, and my sincerest best wishes to everyone else in similar circumstances.

Kevin

[Adagio7780]

I don't have much to offer you, Kevin. I wish I did. I am 55, have a step-daughter, step-son, and two sons, age 25-32, and all of us are very close. No grandchildren yet. I had arranged a pretty decent retirement in the years to come, boating, camping, golfing, things that just aren't going to happen. Through my children, my grandkids will know how much I wanted to be a part of their lives. It's about all you can do.

Good luck with your dad's treatment, and you will all be in my prayers.

[Liz222]

Hi,
This is the first time I've posted on this site, but after my mum's diagnosis in March I found it both informative and comforting to read posts from people going through similar things. Unfortunately she died seven weeks after diagnosis in mid-April, after an initial diagnosis of pancreatic cancer with extensive metastases to the liver. She was in part very unlucky as she had a bad stroke after a DVT (due to blood clotting problems from the tumour) which likely escalated things. I don't want to alarm as I have friends with parents who fared far better after a diagnosis, but with pancreatic cancer, especially when the liver is involved, it is important to be aware that things can change very quickly so never think that something can be done or said further down the line.

As a daughter I was in your position so I can't really say from the other side of things what was helpful. I'm only 27 and don't have any children yet so it is something that your dad has known your son. In terms of practical things to do to help, I found my mum had a very variable appetite (she also became diabetic) and developed new likes and dislikes so coming up with recipes and cooking things she would fancy to eat was something good I could do. I also found that mum and dad were very overwhelmed and didn't necessarily take in all the information they were told by the doctors so keeping up with that side of things and remembering doses etc can be helpful.

Ultimately it's very early days for you so there is a lot still to find out from the doctors and hopefully any news will be as good as possible. Don't put too much pressure on yourself to create memorable moments, even in the most horrible of circumstances tiny things can become infinitely precious to you - like a smile or a joke. Mum was too tired to be able to do much but she also kept her sense of humour right through. Being there is by far the most important thing you can do.

I hope things go as well as they can for you and your family, it's possibly always best to plan for the worst but hope for the best.

[kbosz]

Floyd-

I wanted to thank you for your response. I've read a few other of your posts, and anted to wish you well on your journey along this most difficult path. I truly appreciate that you would take the time out of your day to help a poor soul that you don't know.

Liz222-

Thank you as well for your insight. Gathering from what I've read, the common theme is to take nothing for granted with this disease, and to not assume that there is an abundance of time.

Well, I asked for, and recieved advice. I think that it's only fair that I try to share what little I've gleaned from my brief acquiantence with this cancer. Maybe it'll help someone else down the road...

Anyway, as a concerned famliy member, the emotions and grief seem to come in waves. While at times it is so difficult as to be nearly overwhelming, there is some comfort in the cyclical nature...for every "high-tide" there is a corresponding "low-tide", even if the grief never totally subsides.

I've found it a little tough, but very helpful to try to narrow my focus. The saying "one day at a time" was just words to me before...now, I really just try to focus on what positive impact I can have on my dad each day. And when things get tough, and that "one day" seems like it's too much, I just tell myself that I'll get through the next hour. Or ten minutes.

I suggested my idea above to my mom that my dad prepare a "gift' for my son when he gets older. My mom and dad loved the idea, and apparently, my dad has come up with a great idea that has taken a little weight off his mind. He hasn't told me, and he has sworn my mom to secrecy, which is fine with me. It seems a little more personal this way. I have my suspicions, and knowing my dad, it'll involve his 'unique' sense of humor, but I'll wait and see.

Another thought that occured to me...on Sunday, I'm going to take my son over to my parents, and he and my dad can do some finger-painting together. We'll take videos and movies of the whole thing, and my dad will have a nice tangible reminder of fun with his grandson. Similarly, I also want to get a clay-impression set...you know, the kind of impressions you take of little babies hands. I want to make sure I get one large enough that it will hold two sets of hand prints...one of my son's, and one of my father's.

Like I said earlier, the part that I'm struggling with most is that my son is too young to remember his grandad, when he gets older. I'm trying to come up with some activities and projects that will yield tangible results. I hope that it will ease my father's mind...I hope that it will ease mine.

Once again, I want to thank everyone who read and especially those who replied. The kindness of even a moment's concern to take the time to respond means so much to me.

Kevin

[kbosz]

Wishes to peace and strength on what is likely a very difficult day for many of you out there....

[kbosz]

I was hoping that I might be able to request some additional advice from people on the forum. My father is doing reasonably well, he is in good spirits, and the medication that has been prescribed seems to be keeping the pain at bay. He begins chemo on Monday, so we are somewhat anxious about what this will bring.

My mother has been a saint with respect to his care. This has been very hard on her as well, but she is holding up. I've offered to help wherever I can, however, I know that there are some aspects that my parents would prefer I not be involved in at this point. It seems that cancer does not overcome the natural protective tendencies of parents.

Anyway, it appears that eventually, my father may require hospice care, when his disease progresses to the point where my mother cannot care for him. I have voluteered to begin gethering information with regard to local hospice care options. There are several to choose from. I was wondering if I could get input from people as to what I should look for in hospice care. Understandably, given the very private nature of their business, there aren't a lot of "reviews" like you might find with other businesses. One concern is location, as my mom will likely be travelling from home to hospice frequently, but what else can I look for to make some recommendations. or at least give my father the best options?

Thanks in advance for any advice. My thoughts go out to everyone on this board.

[ethan20]

My dad was also 63 when he found out. He was diagnosed early Dec. 08 and he passed away April 28. He did well on chemo the first couple months. It didn't affect his eating or weight. It did tire him out though. I was fooled by thinking I had more time because he was doing well. He went down hill pretty fast in April. He couldn't eat and dropped weight really fast. He was admitted to the hospital because he was dehydrated and needed a catheter. After a couple days in the hospital he became unresponsive. We took him home with hospice at the end of the week. We realized the cancer spread further than the pancreas and liver and he wasn't in any kind of condition for more treatment. We went with a hospice the hosptial recommended. There is a in patient hospice facility but we chose to take him with in home hospice. If I could offer any advice, it would be to say everything you ever wanted to say. I kept thinking there would be more time and the end came so quick I wasn't prepared. I didn't even bring my children to the hospital to see my dad because I really thought he would be coming home. My father adored my boys and they adored him. I wish they could have been together one more time. My dad knew I loved him, but I never sat down and really told him how wonderful I thought he was. I didn't want to scare him and I didn't want him to think that I thought he was going to die. Cherish each day, let your dad do what makes hime happy. Always tell him whatever he wants will be ok and you'll take care of his wishes. My dad was my best friend so I know what you're going through. I'm sorry I wish I had more to offer you.

[kbosz]

Ethan-

Thank you very much for your advice. I really do appreciate it. I do need the constant reminder to cherish each day because, as you said, my dad seems to be doing really well, and while I've read how quickly this disease can turn, it is very easy to be lulled into a sense that I have an abundance of time. No, I really appreciate the reminder that every day, every moment is special. It seems as though these are words that should be abided regardless of cancer.

After my father told me of his diagnosis, I wrote him a long letter. I know that i'd never be able to say all of the things that I wanted to his face...I'd never get through it all. It was nice to have the time to put all of my thoughts and feelings down on paper. He did read it, and I know that he appreciated it.

Ethan, thank you again for your insight. My deepest sympathies for the loss of your father. I'd like to wish you and your family peace and serenity as you heal from your own loss.

[Killarney]

Kevin,

Sorry to hear about your Dad.
I haven't been on here in a while but this time last year I was in a very similar situation to yourself. My son who is three in a few weeks had a very strong bond with my Dad, his "gaga".
I also lived quite near so I was able to visit with my son quite often which always gave my Dad a lift.
I think children a quite clever and if you have plently of photgraphs and videos they will never forget. If I show my son a picture of my Dad he smiles and says "theres gaga" or something similar. The most heartbreaking thing was when he looked a picture and said he misses his gaga every day. In saying that my Dad told me he'd watch over my son when he was gone and I believe he is doing that every minute of every day.
So my only advise to you Kevin is keep doing what your doing and be as positive as possible around your Dad and your children. Your in for one hell of a tough time but you will get through it. My Dad lost his fight 6 months ago now and I miss him loads but life goes on and I'm still trying to enjoy it as much as possible.

Kevin if you have any questions feel free to ask.

Paul

[kbosz]

Paul-

Without a doubt...yours is one of the toughest posts to read, as it hits very close to home. I do thank you for sharing, though, and I hope that you are able to find solace in raising your son. I'm very sorry for the loss of your father. I'm glad to hear that he did get a lift from spending time with your son. I know that my dad really loves spending time with my son, and it certainly lets him get his mind off of things for a while.

Thanks again for sharing. I'll keep you in my thoughts.

Kevin

[Berkeleygrl]

I had to post after reading your message about your dad and son. I have twin three year old boys who love their grandpa too and this has been very hard for me to come to terms with. He was diagnosed three weeks ago with PC with extensive liver mets. Totally asymptomatic, the disease was found through a CT scan ordered for an unrelated condition. The PC tumor is in the pancreas tail. Six months ago he had surgery for a cancer tumor on his right kidney (stage one, resected cleanly with surgery) and that CT scan was completely clear - hard to believe in six months he now has a terminal illness. Two weeks ago he had a liver biopsy that led to extensive internal bleeding (lost 2 pints into the capsule around the liver). I think from reading messages here that blood clotting is somewhat common with mets to the liver? The first reading of his CA 19-9 was 22,200... a number I have yet to see in any other posting and almost seems too high to be accurate. They will test again of course and I am curious to see what the readings are next. In looking at his CT scans, he has more cancer than liver left... it is all just surreal. He starts chemo next week. Weekly gemcitibine. As a cancer survivor myself I am well familiar with the ups and downs of chemo...

I have really appreciated the suggestions here about how to make permanent the bond that exists between my Dad and my sons, the handprints, the special message for delivery down the road. It is killing me to imagine my life without my Dad, but breaks my heart to think he won't be there even to see my boys' first day in kindergarten.... Before I visit next weekend, I am going to Michael's craft store to get those little plaster hand print things. I am also trying to set up a family portrait session with all of us while he is still looking pretty healthy and feeling enough energy to do it.

Thanks for all the helpful messages - its so nice to have these frank discussions and support.

Karen

[kbosz]

Karen-

Thank you very much for the response. It is very comforting to know that we aren't alone in dealing with this disease. I wish you and your family all the best in your own struggles with PC.

As for my dad, he is doing reasonably well. He was in between cycles for chemo this past week (gemcitibine), and actually felt really well. He and my mom volunteered all week with a local charity. They were able to get outside and do some canoeing (a favorite activity). They both said that this past week was almost back to 'normal', although it is difficult to really remember what 'normal' is like.

I spent a few hours over at their house on Thursday evening, after work. It was a bit of a selfish trip...I didn't bring my family with me, this was just an opportunity for me to be just a son, and not have to be the father and husband at the same time. It was a great time, a lot of laughs, and yeah, pretty much just like old times. From reading many of the posts on this site, I realize how absolutely precious times like this are, and I don't for one second take it for granted.

These days, I talk to my parents on the phone a lot more. I actually think that there are some times when they don't have much more to talk about! There are times when I'm talking to my dad that I stop listening to his words. This is not unusual by iteself, my teenage years were pretty much the same thing....but instead, I'm just listening to the sound of my dad's voice. I want to remember the sound of his voice, because I know that there will be a time when I'd give anything to hear it again. Kind of pressing 'record' in my brain, i guess.

Sorry, i don't mean to go on about me. Anyway, I've found it somewhat helpful to focus less on will be missing in the future, given my father's disease, and rather, focusing more on the good fortunes that we've had. About twelve years ago, my father had quadruple-bypass surgery. Although we didn't know it at the time, we could have lost him then. Since that time, my dad has retired, built a canoe (and paddled it, no less!), done plenty of golfing and skiing, saw me graduate from grad school, saw me get married, met his grandson and step-granddaughter....

I find that focusing on what we've had, does tend to help cope with some of the pre-emptive grief. It's important to deal with, because my dad is dealing with his own mortality, and I don't want him to have to deal with an upset son at the same time.

Two things have come up, though, and I was wondering if anyone had any advice. My dad, while not necesarily in pain, is bothered by the constant gurgling and churning in his stomach. It sounds like a washing machine, and keeps both he and my mom up at night. Anyone have any ideas on how to deal with this? Or, is it just a by-product of PC/treatment?

Also, the effectivity of the chemo seems to change. During the first cycle, my dad felt terrible almost as soon as he got home, and it lasted for about 48 hours. After his last treatment, though, he went home and mowed the lawn. There seems to be a delay in feeling the effects, and they tend to last about 24 hours. No change in dosage though. Has anyone else experienced this unpredictability?

Thanks for reading...sorry for rambing on a bit, it's just one of those days, I guess. I'll try to come up with some useful information to post soon. My sincerest thoughts to all of you out there who are dealing with PC.

[Adagio7780]

kbosz, I have had also experienced different levels of discomfort after gemcitibine treatments. The drive home is 165 miles and a couple of times I have done the driving both ways, but not usually. The day after (Wed) is almost always easier than Thursdays. I take an enzyme pill (actually 3 each meal) to help with digestion - does your dad?

I am also trying to spend quality and quantity time with all my family members. This weekend we are in ATL visiting my wife's family and having a nice time, even though her sister is also very sick.

Well, good luck to you and your dad and please pass along my good wishes to everyone.

[kbosz]

Hello all-

I was wondering if anyone has had any experience with Folfox treatment? I'm specifically wondering about the side-effects. If anyone can provide their experiences with this type of treatment, it would be most appreciated. Especially in comparison to Gemzar.

As for our family, we are trying to move forward one day at a time...trying to not let the 'bad news pile up on us', as a wise man wrote elsewhere on this site. My son has been sick with a cold, so he hasn't visited my dad in over a week. Both my mom and dad could certainly use the pick-me-up that a 19-month old can bring.

I want to wish everyone well on this site.

[Nuh]

My mother who was diagnosed with colon cancer last year was on FolFox... she tolerated it very well. She had one episodde of diarehha which lasted for one day but other than that no problems. The oncologists told us she might experience it as well as sensitivity to hot and cold. She is in her early 70's.

I want to wish your family well... my father was diagnosed with PC on Sept 4th and I came to this site looking for answers and this was the first post I read... unfortunately my father passed on Sept 22nd so I know all to well how fast and aggressive this cancer can be. I was able to spend time with my father and I am so grateful he was given the diagnosis in enough time for us to be able to do so.

There is always hope but you definitely must cherish every single moment, every conversation and just those moments where nothing is even said between you. My father was so aware of who was in the room even when he was unable to open his eyes. He could tell who was holding his hand and he reacted to the grandchildren most of all...

I am praying for you and your family...