ljg
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YES! My Mom’s CC arose from back pain that she ignored for about 3 weeks, thinking that she pulled a muscle. Later orange urine sent her to the ER which began the process of diagnosis.
Unfortunately, and I am sorry to say this, we understood that her pain would be controlled, but between the back pain and discomfort from ascities, it really was only knocked down a bit. She had a difficult time getting comfortable and said her back ached so badly, we bolstered her repeatedly each hour and she was extremely pain tolerant woman.
I am of the belief, although it was not proven, that her cancer, which was stage 4 when found and very wide spread (on the bile duct, the duodenum, gall bladder and on the diaphragm… still hard for me to say that, you know), had spread either to the bones or was wrapped around the spine, fascia or nerve bundles.
Hopefully, this pain will calm down, change for the better (which it can) or be decreased with fluid draining if there is ascities involvement.
So sorry to hear that anyone is in pain. Good luck with the meds. The pain patches were particularly helpful for us and began to contain the pain later on. All my best to both you and your Mother. I’ve been there, Vincent, and you are not alone. -ljg
It is wonderful to hear good news in the midst of this dis-ease. Very timely too. I am happy for you all. Someone has to show CC who is boss! -ljg
My best to you Patsy-
I totally understand and do not feel like the same person since my Mother “left”. I have found there there is a serious wave-life cycle to my grief, and at first it is by the minute, then by the hours, but the part of the day, then by the day, the week, and the month. What I have also found is that this analogy to the ocean is pretty hard to shake.
Recently, when not processing my emotions outwardly because my counselor was away and I was extremely busy and felt that no one understood (including supportive friends, family, and my husband), like a rogue wave it hit me while sleeping and I sat straight up and burst into deep grieving tears.
It is always there, even if we don’t acknowledge it, and I have found a way to accept that. At times, when I can no longer feel, I am once again humbled by it and I feel closer to my Mom and often angry all at once.
To help myself transition I let it all go and listen to one of her favorite songs (by Carly Simon). Some days are just bad days and we have to accept that. It hurts whenever we are open to it and you must have been ready to move through healing a little more when you wrote this.
You are not alone
. It’s just part of the process and yes it sucks. I am accepting the reality all over again myself. I will go on from this and try to live fully; that’s what they would have wanted for us. -ljg Valerie-
I believe it hurts so deeply because you love him so fully and that is a strange gift in reality. It would sometimes be so much easier to let go, but when I was struggling with loosing my Mother (we were exceptionally close), I clung on tightly until it finally hit me it was all out of my control.
I was experiencing a total meltdown (and I needed some meds to help ease my own pain of anxiety). Being able to be destroyed by it all at the time and live fully in the moment, in turn made me stronger. Something no one ever wants to accept. There are unusual gifts and life lessons that are right now breaking you down only to later build you back up. They are there, just look and you will find them. You become able to do things you never thought you could or would have refused to do a month ago. You are strangely being reborn through the loss and yes, it does hurt so bad.
Be glad you love so deeply and can admit and express it. It is a beautiful thing, this life, and love, and path we are on right now. It makes sense to me that you want to fight to keep it and keep him.
I remember what it was like to be so totally swept away with emotions. You hang in there and ask everyone you know for help, even strangers. You will find your way through this and you are not alone. My very best to you and your husband.
My best to you Kelly.
Unfortunately I share your experience and I find it helps to reach out and try to put into perspective and help others smack in the middle of an unforeseen hell that we have experienced. I have not specifics to offer, just know that you are not alone.
Researching the materials somehow settles more things in my restless mind, so that I can make informed changes and live longer.
I am sorry for your loss. -ljg
Pam-
If it helps to know this, they installed a port in my Mom and I was taught, alongside of a Hospice Nurse, to drain the fluids to relieve some of my Mom’s pain. This became a ritual and we were required to add back fluids after it was determined that we could not add back albumin (a blood product, and out of the question to be done in the home). She had to be on Hospice service for this to even be considered. She left the hospital and they did not expect longevity for her.
I traveled there shortly after diagnosis, after quitting my job, to be with her as I have always lived far away and needed to be by her side. That was the best decision of my life. She got little time but in reality she had an amazing time with friends and family coming in to see her after she left the hospital and Hospice became involved. They showed up all week long on the hour for tightly scheduled visits. She “lived” to see each and every one. The 2nd week things changed. She also got to fulfill a last dream (which incidentally she told me shortly after I had watched a related movie just months before being diagnosed)… to hold a newborn baby. Such a joy to remember now and I have photos that are amazing.
These times are beyond challenging, and Hospice was amazing, they supported us so well, despite our sheer overwhelm and not being able to let go. It does not help to know that this is swift, but later it will in fact be a blessing as this disease is the most ridiculous I have ever know of. Pancreatic cancer, while terrible, looks like you get much more time to prepare than CC.
Ultimately you are never prepared, no matter your age. My best to your family to you and I reach out and offer a e-hug now. Gather your strength and seek support for you. I am so sorry this is happening to anyone anywhere in the world and am truly impacted and forever changed by each and every personal story and struggle.
When you think you cannot go on, gather strength from friends here and know that we are with you. All my best. -ljg
Ps. As a result of quitting my job and caring for my Mother, Patty, I am in the midst of fulfilling a life-long dream of mine, becoming a massage therapist. Obviously I recommend massage and tough therapy for patients, loved ones and anyone who needs to heal from loss.
Stephanie-
I agree, strong hearts don’t quicken anything but the pain does end. My heart goes out to you now, I hope that you can feel it.
I remember the day my Mother died well and it was so confusing (8/6/08). I am getting better all the time, but I am forever changed by this absurd cancer. In some ways, amazingly, it is for the better because I am more awake and alive than I have ever been.
I know what you went through, and I honor your Mother with one last request. Heal Stephanie… we can do this in time, and you will.
All my best to you and your family. (((Hugs))). -ljg
MY very BEST to you Tom.
As you can see and maybe even feel… we are all thinking of you and you are not alone. (((Hugs))). -ljg and the CC Community.
Magic (& Charlotte and others)-
I am so sorry and troubled by your loss. It is a lonely time for you. Keep reaching out to those of us who understand. My best friend is gone, my Mother. She was merely 61 years old and was only 60 when disgnosed, and gone 41 days later.
You are not alone, please know this, and make steps to find support locally, in therapy, through friends, and get lots of hugs. Do whatever it takes to move through this.
I speak from the vantage point of a daughter. My Mother lost my father 1 year earlier (he too died early at 61) and it knocked her down hard, which I know speed the cancer to her quickly. The stress of loss and the trauma that occurs is so hard on those of us left behind. A part of her died with him and she made me promised not to let loosing her destroy me. You too have to promise your husband and yourself something similar.
I know it stings to hear this, but you have to go on living… without him. You have to live more fully and trust life again despite the shock and confusion. I only wish I could have made my own Mother understand this. She was trapped in her grief, and it hurt her more. Please do not make that same mistake.
(((Hugs)) to you. Take care of yourself. And remember… YOU ARE NOT ALONE. -ljg
Ralf-
I am so very sorry to hear of Fiona’s current situation. It’s not good news, the ascities. I am surrounding you both with positive energy now as I type this.
To answer your question honestly, and I think you need an honest answer, ascities is intracellular fluid that in almost cases with cancer builds up repeatedly, despite efforts to remove it via ports and drains. It becomes a terrible way to live and, at least for my Mother (who was 61), was quickly too much for her system to handle.
It may have been the series of events in her life previous to that occurring, but her energy waned quickly. She was strong, knocked down, and gone before my mind could cope with the thought of loosing her. I am so sorry not to offer you hopeful news, but you must prepare, and by your mere question, intuitively, you know this.
I hated to even consider the word hospice, but they helped support my Mom and our family through this difficult time. The people we encountered offered suggestions at every turn and they were able to give is reality checks as we needed them. Make her comfortable in any way you can.
(((Hugs))) to you both. You are right… this disease is horrible. Be brave and find support for yourself and Fiona quickly. -ljg
Thank you Darla & Cherbourg…
I have no recollection of posting this, but days are like dreams sometimes, drifty.
You have said what I have needed to hear and I will pay that forward with others. It is so nice to know that we are not alone in our grief. -ljg
Hello Daley Mom-
I wanted to offer you support, as a daughter who was once placed in a similar position. I know that you want to help your Mom, and you already are in ways she may never be able to express.
Keep in mind that since this is happening to you, as a daughter, that it is happening to her as a wife, and the perspectives are very different. The best thing you can do for your Mom is tell her that you will be there for her, and mean it. You will not know, at first, what the right things are to do, but you can defer to her, and challenge her thinking when necessary (if she is temporarily blinded by the difficult subject matter).
Honestly, the most difficult part is getting your own head screwed on straight and taking the breaks that help it stay that way. I know, because I have been there. I am 39 and I come here to support others in similar situations. You can do nothing “wrong”, just showing up and showing that you care makes all the difference.
I would also suggest reaching out to her physically, and getting yourself an inner circle of support. You have to help yourself first before you can help those around you. All my best to you and your family. Remember, there are others in your position and you are not alone. (((hugs))) -ljg
LuLuu-
I adore your defiant quote and your sheer determination to help your husband in every way that you can. Fighting with foods and supplements is the best approach possible. Keep up the stellar attitude. -ljg
Hi again-
My Mom was transferred after her cancer was found in a suburb of Pgh. The family is pretty much from Pgh. and we have doctors in the family in that area too. Ironically, my Mom was born at West Penn Hospital…
We have links and I hope that helps you feel that you are not alone.
My very best to you, sweetie. You hang in there with this process. -ljgHopeandgrace,
At 28 this must be a lot for you; it was for me and I was 38 when I was touched by cholangiocarcinoma (back in August). My Mom was in Pittsburgh, in Montifore Hospital. If there is anything I can do for you, any help or contacts that I can share, please do get in touch. I will help in any way possible.
We are too young to be dealing with the enormity of these situations, but I am sure that everyone feels that way in the face of overwhelming life changes. Be strong and care for yourself well.
Sophie, please know that my Mom too when through this, and your relief from the drainage is right on target. I am sorry your are dealing with that, and it reminds me of how much I hate this disease. I wish you well in the face of adversity.
-ljg
