All new too Liver and pancreatic Cancer

Hi Jenny, welcome to Connect. I'm so glad you found us.
I'd like to introduce you to a few members who are walking similar paths. Please meet @IndianaScott @bbams and @besrus5. You can read some of their stories here:
- My husband has pancreatic cancer http://mayocl.in/2bmaoPd
- IV Colorectal Cancer Patients - Questions from a caregiver http://mayocl.in/2bHwXQ2
- Brain cancer: Oligodendroglioma http://mayocl.in/2bPjQgX

This is a journey for which there are no road maps. We're here to help sort through the tangled path. How are you and Gary doing today?

Its definitely going to be a long journey. Having to drive 2 hours to the cancer doctors then drive back, twice a week. Its hard im also disabled so our finances are getting bad. I did create a fund me page havnt had any luck with it yet.

Good! Have your friends spread the word? Chris's page that my brothers and his best friend created was spread all over social media by everyone we know. His dad has a ton of contacts in his town but spread it through work contacts and everything. Raised a LOT of $. Then his brother held a benefit for colorectal cancer awareness in Chris's honor which raised $12k. We gave it to the hospital though because the crowd was all the same people that donated to the crowd rise (like go fund me) fund so we felt bad taking that $ too :/ Oh... crowd rise takes less off the top than go fund me. and i think there is an even better one than that so you may want to look into it. Chris's crowdrise took like $3k+ and I feel like that's a LOT and I think go fund me takes double.

My heart hurts for all of you!!
Loosing my mother to brain cancer was what I thought was the end of my world. It took us by complete surprise and I was pregnant. I was so busy being her nurse, caregiver, and doctor trying to find treatments to help her live that I forgot to take time just being her daughter. Please I beg you to make sure you just be there & be present. Hospice is so wonderful to help with this. I would give anything to have that time back. As god took one angle home he gave me another. Tears!!!!

BIG HUGS,
Dawn

Im 38 my boyfriend is 59 yes he is much older.hes the best thing that's happened to me.his parents passed away and so have mine so i don't have to worry about them but i do have to deal with his kids which are near my age.they haven't been mean to me yet.Gary has been more grumpy lately. I just figured its because hes in pain.he refuses to do kemo he says he would rather let nature take its course. Ive read up on cancer and kemo i understand where hes coming from. It just sux having to watch him slowly wither away from all the weight hes lost.i guess i just got so comfortable with having everything i needed and wanted i never thought id eventually loose him to cancer. Gary is the long hair and beard biker,tough as nails.a heart of gold.I don't have a clue what ill do when hes gone.im disabled and can't work, so im taking it one day at a time.The drs told us theres nothing they can do for him but pump pain meds in him,he went from 260 now hes 190.only time and waiting now, thanks for listening.

I can also relate to the pain I watched both my parents take there last breathe. I work in the hospital so everything came down to me and I had 2 young kids at home also. The best thing you can do is make sure his will and everything is in order the way he would like it distributed. Take some time for yourself to pray if you believe in that, and then just be there for him and let him know you are there. In order to take care of him at all you have to take care of yourself. Good luck in your journey and I pray for you and your family. Peace to you

I understans. I lost ny husband to that has he ever served in The military ?  Exposure to Chemicals Can be. The cause military wii pay benefits

Thank you for your kind words.

I just couldn't stay away. After reading your post/story on liver-pancreatic cancer; "I think you are personally in a speculative phase from what you've heard from others or even your own feelings." At this point and as hard as it may be, you should try to enjoy as much time with your boyfriend, but also realize he is in a partial state of withdrawl from life.

I say this as a Past Mentor, as a 77 1/2 year old male who was put in Hospice two months ago, due to Pancreatic Cancer reaching and growing in the Liver, Spleen, GI and GU tracts. I continue to lose weight and have lost 2 1/2 inches in waist so far--let alone have lost diet and thirst=anorexia. With my Hospice team, The Lead Nurse, Social Worker and Chaplain, they are clarifying the reality of what I am going through insofar as the end of life. I seem often tired and want to sleep. That is understandable too, since his/my weight loss diet loss "we're losing these things because we no longer have the diet to support the calories, infections and problems cancer has caused our systems.

He doesn't want to be a burden onto you, per your story; so is less apt to specify feelings he knows could hurt.

One thing I would strongly suggest beginning "is contacting your doctor or hospital group for possible entrance into a Hospice group. There, they'll give him and you the most individual support possible toward leading whatever time is left 'a Quality of Life' instead of its worry." As for you, "I hope you will also realize that they can help you understand how to live with this situation, so that the strength in learning, faith, hope and perseverance may make you a stronger person yet.

Best Wishes to you both.

irvkay312 Mentor

Hello @jennyjones38. I am Scott and while I have not had cancer, I was my wife's primary (only) caregiver during her 14 year battle with brain cancer. I feel for what you are going through, just as I do for your boyfriend. No denying it is tough stuff. I would strong support @irvkay312 and his suggestion to look into getting a referral to hospice care ASAP. After the care my wife received from the neuro-oncology team at Mayo, the most important care she received was when she moved into hospice. She chose to have home hospice care as she did not want to be in an institution. She never regretted a day of that decision no matter how tough her journey became. First, hospice care is truly patient-centered and their mantra with my wife was 'feel no pain' and no matter how the cancer progressed she was not in pain. Early on, the hospice visits by the nurse, doctor, etc. were a roller coaster as sometimes she feared the visits (thinking she would only get more bad news) to later when she got pleasure from them as they were so caring and supportive of her needs.

Each person's journey with cancer is unique. So is each caregiver's journey along side their patient. So please take my words with a grain of salt, ignore them, or take them to heart. Whichever fits for you.

I will say, again only from my experiences, try and not go off into the future. None of us know what it will be, how it will unfold, nor how we, and or patient, will react to anything. I know that is hard, but just do what you can do at the time. I would suggest you try and talk with your boyfriend about as many of his final wishes as possible. Initially this was not possible for my wife, but then for some reason known only to her, she changed her mind. She had certain things she wanted to pass along to family and friends and wanted to do that herself. She also designed her celebration of life and this helped her -- and the family in many, many ways!

I am always open for questions....

I wish you strength and peace.