Cancer: Nothing about this is normal.

Sorry to hear about your second round of cancer. I have the utmost respect for anyone who can “make it through the rain” twice or more.
I became quite Ill after the first cycle of Folfirinox chemo resulting in a 12 day hospital stay on TPN because my guts became inflamed. After my second chemo in chairs, I demanded a booth or bed: other patients were more or less having a party and I was having a panic attack. Going forward, a 50cc shot of fentynal in my port at the beginning of the session, and the next 10 were quite tolerable, bordering on dare I say, enjoyable.
Did/do you feel any survivors guilt? It was crushing at first because all I heard about is what a killer it is and why should I be survive when others die a horrible death. A psychologist has helped me work through it and you are so very right about reason for surviving as there is so much more to be done.
The nurses at LVHNTopper Cancer Center are the best: always willing to listen, advise, and encourage.

@dakotarunner Reading your message really brings inspiration. I don’t have cancer, but i do have an autoimmune disease that required chemo to bring it under control. It was a scary experience. Keeping on inspiring people!

Never had any survivors guilt. Dr. Truty at Mayo-Rochester told me I was "one of the lucky 20%". He meant I was one of the lucky 20% who could have surgery. Took me a few days to realize I was lucky. I remind my self of that every day, and I try to be a better person. Smile, greet people, offer encouragement. Smiling, being upbeat and polite do not take any more work than wearing a frown and being a grouchy old coot. You never know the physical burden or mental another person is bearing. You may unknowingly be a beacon of hope to someone battling cancer. Best to you and look forward to visiting you and others on this site for many years to come:)

@dakotarunner Similar to your situation, I am handling two concurrent unrelated cancers, plus failing kidneys unrelated to either one. Something I noticed this week, traveling to my monthly oncology and nephrology appointments, was a major shift in my attitude. Due to the current health situations and Covid infections, it is a rare treat to get out and about. Going to a medical appointment is a big deal for me!! LOL So, even when I am not feeling as good as desired, I keep a lightness in my voice, help others with a smile and being polite. So many are surprised if they hear my health issues, almost always saying, "You're handling it so well, how do you do it, you're an inspiration, etc". I figure somehow I was chosen to play this role, and there is a reason for it, even if it is to encourage someone somehow, making a difference in their life. It's a complicated case, definitely, and it is teaching my medical team [importantly, that includes me!] how to work with all the components involved. One is an incurable blood cancer, the other is remedied by surgery to remove a kidney to delete a tumor there. Taking each day as it comes, having a voice/choice in daily living is important.
Ginger

You are inspirational. You voice so many things I try to do and relay to my Oncology team. I am sure that we are not the only patients that feel this way and have talked with our teams. My question is why do have to 'train' our teams how important it is to consider the whole picture, not just medical treatment. That should be their approach from day one. My team is great now, after I gave feedback post the first visit. They know that I have some research background and will be searching for options along with them but want to hear and participate in their considerations. I push sometimes and they respond so well. Thankful to have my team.

Kevin, I am delighted you are a survivor and hope to get that label. I have not had the experience of friends nor anyone voicing that I was doomed. I have thought and vocalized it and then said to self..."even if it is true, am I going to waste my time on gloom or enjoy the life and people I love?" I am trying to do the latter. Keep your head up, smile, because we are certainly smiling for you!

Absolutely nothing in my wife's or my life has been normal since her pancan diagnosis in July 2019. I know what's really happening but keep myself in a high state of denial because it's the only way I can stay hopeful. Most people think that covid restrictions were abnormal but their heads would spin if they had to layer pancan treatments and surgeries on top. My wife has had so many issues with food that she has PTSD and fears eating. Food shopping is an ongoing hunt for something that she'll be able to eat. Restaurant food may never the possible again. Vacations longer than the time between treatments and doctor appointments won't be happening either. Haven't been able to have visitors or family in 2 years. I can go on and on but I accept it all because it's 1000 times worse for my wife. I cheer her on and care for her the best I can but there's nothing normal about life when battling pancreatic cancer. I pray for her and all of you every day.

Talk to your Medical team about every issue.... food, talk to a dietician; emotional, ask for a counselor; vacation, ask if you can miss a treatment if you have something planned or want to. My oncologist told me that taking a one treatment delay was fine. That my emotional state was important. Having visitors; we do not have many and they wear masks but it is not NO visitors. I have had 3 Covid shots and my Flu for the year. I had my dentist send a plan of dental desires to my Oncologists and we decided what I could do and what to wait on. I attend my civic organizational meetings vis Zoom or in person with distancing and masks. We have gone out to restaurants and the owners know that I need to sit in a less congested area, they always help. I too had intestinal issues post-surgery but drank bone broth (& still do) to help with inflammation and ate a cracker with peanut butter or saltines alone as if I were pregnant. I also chew on crystalized ginger & drink ginger tea to help calm the stomach. I ate very small amounts before but many time a day to keep up stamina and protein. Waling actually helps the gut relax and being able to eat more and diffeernt things. Lately I'm in to Asian foods, especially noodles. I add high quality tuna under olive oil for protein or veggies that I steam..bok choy & snap peas or whatever I LIKE. Drink a lot, I am bad but try. I do drink High protein shakes. there is even one that is good for nausea if tht would help. I used Creon for a while but then couldn't see of difference. It did get better after about 6 weeks but I still have episodes and use Galviscon to help settle things...suggested by my Nurse Practitioner.
I know what your wife feels but I need to say to you that you are her main support and your mental health is very important to that support. YOU have to have an outlet. I have other family members, daughter, sister, nieces, that are there to physically and mentally support me, but my husband is my foundation and he is denying or avoiding the possible outcome as well...But I make sure that he has outlets he loves..GOLF with friends. My daughter and sister take me to Chemo most often so that he can do his usual golf day. Lately the weather has interrupted that plan and I can see the difference in his mental state. Please take time for you so that you can be better for your wife. Have her join this group just to voice her issues and talk to other patients. I find talking about my feelings with this group has been so good. I have gotten good suggestions on things. We are thinking about your wife and You. Life has change but create as good a new Normal as possible. Thank you for your prayers and I pray for ya'll...from the south.

I meant to say that WALKING helped the gut.

@bb21, thanks for the extensive comments. You sound like you are doing well and have found things that are helpful. I am very happy for you. Everyone's case is different and a lot has to do with how many treatments, types of treatment, surgeries and of course the virulence of the disease. We have 3 oncologists, 3 nutritionists, 2 therapists, 2 support groups etc. But my wife just hasn't gotten any breaks. We've tried supplements, protein ingredients, minerals, prescriptions, everything that has been recommended and most don't get the expected result. My wife went from healthy and able to weight train 3 times a week, bike 20 miles or more a couple times a week to barely strong enough to walk from one end of the house to the other. After her first 9 folfirinox with oxalyplaten treatments she didn't even look like a cancer patient. Even after her distal and more she still looked well. She went from 9 months of NED with low CA19-9 and no visible tumor to having a golf ball sized recurrance that was non-existent in a scan from 6 weeks prior. So back into treatment after more surgery. She had 18 GAC treatments and we were told it was ok to skip a treatment so she could recuperate an extra week and her CA19-9 tripled. Now she's on Onivyde every two weeks and it is rough. Believe me, i cheer her on every day and I still believe that she will be the one who makes it into remission. I don't know your background but I was a lifelong competitor... you name it sports or business and have always led by the philosophy that I'd never ask a teammate to do anything that I wouldn't do myself. My wife gets no breaks in this battle so neither do I. Breaks are a luxury we don't have. BTW, my wife is on other pancan discussion groups and I don't go on the ones shes on and she doesn't go on the ones that I'm on. Despite everything, my wife is still the sweetest, nicest person you would ever meet. Thanks for your concern and prayers.