Hello there guys/girls: My name is Susanne. I have a mother dying of cancer and wanted to introduce myself. I am new to the forums but thought it would be good support for me to be with others of a similar circumstance. I love my mom very much and she is fairly young. She is 58 and has MMMT cancer (uterine cancer), a rare form of cancer that is very aggressive. The prognosis is not very good in fact horrible. She has lived longer than expected, but not expected for very much longer. I am at a loss here. I don't know how to get through this. She has dimensia very badly and can barely talk or walk. I miss her personality so much. What I am faced with right now is I don't want to lose her physically. I don't want to let her go despite God's plans to take her. I love her with all my heart. Does anybody have some bible versus that could make me feel better? Or anything that may make me feel better. How is anybody that I meet in the future going to know what a wonderful woman she is? They will never know how incredible she is. I will have to tell them but its not the same. She has deteriorated so bad that it is sad to see. I just don't want to let her go because I love her so much. Thank you for your time and reading. Nice to meet all of you. Hopefully this board will help me. Love Susanne.
Hi Susanne and welcome. I am very sorry for the pain you are feeling and for your Mom's situation. What you are feeling is normal, of course, but that doesn't mean it is easy to bear. Do you have someone with whom you can share your feelings about your mom? A minister, counselor, family member or friend? You can do it here, of course and we will do our best to support and help but if there is someone there who can help, it could be of value.
Also, is your Mom receiving hospice care or is she still under the care of an oncologist? If she is truly end stage, and it sounds like it from your post, than you should speak with hospice as they can provide a lot of support during that time.
I am going to move your post to the Coping and Support Forum, where it will be seen by many more people here who can help. I wish you well and hope that the remainder of your mother's journey is a peaceful one.
When the world says, "Give up," Hope whispers, "Try it one more time."
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
Hi susanne- Im sorry you are going through this-my mom has already lived waay past expected. and is still battling.
I see eher decline as well.
Its a horrible feeling once the role reversal started -us taking care of them.
how will people know what a wonderful women she was?- your here to tell them and they will know too by the wonderful caring daughter she raised.
Im sure this wonderfull women has many relatives and friends that also know .
you already convinced me and Im well basically a stranger
good people dont need to have others say how good they are -they basically leave their own legacy of goodness not to be forgotten-I wouldnt worry about that.
you know yeas its you that is suffering right now- how are you going to handle it? by grasping her moments of life one day at a time like you have been doing through this whole mess.
thats all we can do but you need to realize living with this disease and dementia on top of it-is truly not an enjoyable life for this special women. If you truly want whats best for her- that would be to let go when it is her time. she and her God will know when that is and the very best last wish and gift you could give her is to allow her to go and assure her you will be ok.
dont get me wrong and believe me its not something that is easy and we all will have to do this. some are doing this as we speak.
I dont think at times I will survive this situation myself when the time comes.
but I will and you will we really have no choice but to carry on untill we meet again wherever whenever how ever.
I do have the faith that ones true soul is soo unique that there is no end and they do live on in some form some spirit something we have yet to learn.
we will be here for you as yo go through this-enjoy as many hugs and lucid moments as you can and cherish them forever. I pray she doesnt suffer.and also for your stregth to get through one of the most difficult times of your life.
you can do this.
April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
port-port rejection-port removed 1week.
Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
transfusion central line TPN 1 month.
oct-09-surgery tumor ,colon and jejuneum removed.
xeloda reduced. severe dehydration,heart attack.
mar-11 return to original site-oxyplatin,5fu
dec-30-back to chemo erbitux camtosar
Jan-16 injections neulasta and aranesp
feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
starting a regimine of celebrex
aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
sept/10-12-good urologist report one kidney functioning well for now.
oct/23/12-chemo pill Stivarga(regorafenib)
dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
Feb/21/13 neulasta injection
Feb/22/13-blood transfusion. still taking stivarga.
mar/20/13-arenespt injection rehydration and magnesium IV
mar/21/13-acute renal failure-kidney infection
april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
swollen hand no apparent reason black spots in vision off and on. both cleared up.
may/22/13-home oxycodone for pain shoulder neck arm
june/1/13 pain subsided off oxy onto aleve
june/09/13-pain back off aleve on vicodin
june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
june24/13-last day of radiation-on steroids
july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
july 23/13 vicodin cut in half blood transfusion.
sept/6/13-off all pain meds since late aug
scan results fracture in spine mid back
sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
nov/7/13-edema both legs and one arm on lasix since oct.
nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.
Your mother will always be a part of you, even as she slips away. Her being will shine through you, and - in time- you will find sharing stories about your Mom like the warm summer sun warming you all over.
This morning, on my way to work, I was singing to a cd , and was instantly aware that my late husband and a long gone friend were with me as I sang. It is beautiful, and you will feel it too.
You are too hurt , and will be too raw to maybe even understand now- Your Mom is slipping away, and that is where you are. And I am so sorry. I do not think any of us are ready to loose them to His home, but once there, she will be as she always was- how you remember her. Ben said he would go when God tapped him on the shoulder and said it was time to rest now. I believe that was how it went. I would have done anything in my power to stop his passing- oh yes. But he is at peace, and we are fine...
God Bless, and I send my prayers to Mom and to you.
Kathy: still hearing Ben's music, and feeling his love: but from the Heavens now
I'm deaply sorry, my mother is going through cancer as well. If you need anyone to talk to I'm here. I try to just cherish all of my old memories with my mom before she got sick. I love my mom like you love yours. Best wishes! <3
My mom just died on Sept 21...she was my best friend....
I have 2 young children...who will never remember their grandma...it kills me inside. But like others said, she is part of you and you can use your words to tell anyone and everyone about how wonderful she is/was.
Good luck. I always said I wouldn't know how to live without my mom...but somehow...you do.