Topic: Endgame

Well, that was it - at 5 am this Friday my mom passed away. I feel a strong need to give back to this forum, but since I'm nowhere near finding the cure for cancer (though I might try some biohacking in the future), I'll just describe the ordeal that my mother faced, so that perhaps some other patients and loved ones can in the future be prepared for what this disease might bring. Needless to say, every cancer story is a different one, so your mileage may (most likely will) vary:

September 2012: mom starts losing weight, thinks one of her diets has finally worked (she's been overweight for as long as I can remember, but not really obese)
November 2012: urine gets dark, she unfortunately ignores this symptom (maybe the billirrubin was already making her confused or perhaps she was starting to have mild dementia due to her age)
December 2012: jaundice shows up, GP orders ultrasound, which is inconclusive. Only after MRI and CT scans it's relatively clear that it's a cholangiocarcinoma, not operable according to two different doctors
01/02/2013: plastic stent inserted
01/09/2013: stent didn't work, decision to go for radiotherapy. Meanwhile mom gets weaker, sleeps a lot.
01/16/2013: ultrasound biopsy failed due to too much fluid. Mon starts suffering from incontinence.
02/01/2013: oncologist gives her one or two months, gastroenterologist suggests external drainage
02/03/2013: mom gets really week and refuses to eat at home, so I take her to the hospital
02/04/2013: mild pneumonia detected, treatment for infection started with antibiotics
02/05/2013: radiologist comes and starts preparation for external drainage
02/06/2013: she starts getting blood to be prepared for the drainage procedure, since she has severe anemia; severe loss of conscience, talks less and less
02/07/2013: stops eating food, taking only yogurt and shakes
02/08/2013: we cancel the drainage procedure since her conscience goes almost completely away. She starts being fed through a feeding tube
02/09/2013: last time she talks something other than "hi"
02/11/2013: oxygen added to help her breathe. Doctor suspects she's in pain and adds analgesics
02/12/2013: doctor adds morphine to her prescription. Blood pressure gets really low at night.
02/13/2013: starts having secretions pumped from her throat and lungs, her breathing sounds "bubbly". Urine needs to start getting drained too.
02/14/2013: doctor says she's in coma
02/15/2013: death due to acute respiratory failure

Though it might sound scary for someone who has never dealt with a cancer patient in the family, I'm afraid many will recognize some of these "steps" as being part of their history with their loved ones. I hope I don't bring too many bad memories, but putting this "on paper" is a way for me to cope with the terrible way in which the disease has progressed.

One last thing: as you may notice from the account of the facts above, CC has been for my mom a permanent downward spiral: there were no "ups and downs", it just kept getting worse and worse.

Still, I do wish sincerely that future patients do not go through this ordeal, though I'm afraid the technology is not there yet :-(

Re: Endgame

Dear Marcos, I am so very sorry to read about your precious Mom. I am happy though that she did not have to suffer anymore than she did and is now in a perfect peaceful place.
Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Endgame

Marcos,

I am so very sorry to hear about your Mom's passing.  She was lucky to have such a loving son by her side through this ordeal.  May her memory be a blessing.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Endgame

Dear Marcos,

I am sorry to hear of your Mom's passing. You tried so hard to help her and I am sure she was so grateful to have such a wonderful son. May she rest in peace, free from pain and suffering.

Bless you,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

5 (edited by PCL1029 Sat, 16 Feb 2013 00:39:59)

Re: Endgame

Hi, Marcos,
I am sorry about your mom's passing; but out of all this bad things had happened , you had shown your courage to reach out and try your best to help your mom.
Marcos, I have 4 children and if just one of them  will do what you have done, I will die with a smile on my face ,knowing that they have a good upbringing and a good heart to care about their parents ,brothers and sisters.

You are a good son and a good example of love and devotion to your family.
Thanks for your detail and chronological description above, it will help us to understand more about this disease. Thanks .

God bless you.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Endgame

Dear Marcos,

I am sorry to hear that your mom has passed.  Be comforted knowing she is no longer suffering.  Although this is a very sad and trying time,  know that she will always be with you in your heart and memories.  Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Endgame

I'm so sorry, Marcos. Thank you for sharing the stages your mum went through. I send my love and best wishes to you and your family.

Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Endgame

Dear Marcos,

I am very sorry to hear of the passing of your dear mum. Please accept my sincere condolences. I too lost a parent to this cancer, my dad and I know the pain that you feel right now. Please know that we are all here for you and my thoughts are with you and your family right now.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Endgame

Dear Marcos,

Thank you for letting us know of your Mom's fight with this monster of a disease.  I lost my Mom to CC on April 3, 2009.  Her fight lasted almost exactly one year from diagnosis, so I know the pain of losing a Mom.

In the coming days take care of yourself and give yourself time and permission to grieve.  Grieving is the hardest job I think we ever have.  No two people will grieve in the same way or timeframe.  Be gentle with yourself....you are an amazing legacy that your Mom leaves behind.

Come here often.  Someone is always awake here and we know how hard this fight can be.

Hugs and prayers to you and your family,

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Endgame

Marcos,
I am sorry to hear of your Mum passing away.  It is a very sad time indeed, take care of yourself and your family.
Cancer is a horrible disease, my Mums story sounds very similar to yours, beginning with some weight loss, her thinking it was great to lose some weight, then next thing we know...a cholangiocarcinoma diagnosis, and 18 days after that we lost her.  I like to think she is still with us in someway.

My thoughts are with you and your family..
Take care,
Kirstie