Worsening
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Dear Jose
My heart breaks for you and for your sister, as well as for my sister and for me. Your descriptions hit me hard, as my sister is in very similar circumstances, although they stopped her chemo a year ago. The doctors say she’s given them several “serious scares” over the past few weeks, but she doesn’t want to leave this life yet, so she’s still here. I do believe her determination is a strong factor in all this and the doctors have now said she should work on the basis that she doesn’t have very long left but that they really, really, really don’t know. She isn’t fitting any of the patterns they’ve seen with other terminal cancer patients.
3 years ago she was given less than 6 months; 6 months ago she was given less than a week. I got a call a week ago to say she was slipping into final unconsciousness and yesterday she was up, fighting the nurses (she’s a very feisty lady, my sister
) and going for a walk in the garden with her boyfriend and me.NO ONE knows.
Love and hugs to you and your sister, from me and mine.
Julia xxx
Dear Jose,
I don’t know what to say other than I am very sorry for your sister’s suffering.
I hope she can find peace and relief from her pain. My prayers are with you both.Love, -Pam
Oh, Jose, my heart is breaking for all of you. This is inhumane for your Sister. She is going through all this to buy maybe 2 months? If she cannot be told the truth what about telling her the doctor feels she needs a break from the chemo? Ascitis can be so painful, are they going to drain her? This all sounds so barbaric to me, sorry but there is no reason for anyone to be suffering as she is. The saddest part is you could be making some lovely memories and enjoying each other. And you are right she is using up all her good fighting energy. Is she on any pain meds or meds for agitation. I thought Xanax was for depression not pain. I could be wrong.
This is a disaster…she is having everyday crisis of anguish with crying and shouts… saying “I want to kill myself”. The only moment of peace now is when she is sleeping. It’s the only time that her body can fight back, doing something for herself. We asked the doctor about this. Doctors tend to sort every problem, prescribing pills. She is taking alprazolam (brand name is Xanax in the USA) but it’s not really working. Doctor told us that she might gain two months more. Her ascitis is exploding out of control now and her quality of life, pain and so on is unbearable. She is in horror now. Totally. Perhaps sleeping is the only peace moment, but she does not have a good sleep. She wakes up every single night full of anguish. I can’t cope with this. Two months but she is taking another chemo and suffering and suffering. You know, we did not tell her the real situation but somehow she knows, her body knows, she feels it. And this is the thing: can a person accept this fact, the fact of the end of your life just like that? She cannot.
Thank you Gavin, I believe she is using moisturiser but we have not tried any artificial saliva… thank you very much for your support. I’m still expecting the CAT results and I will post it here.
Hughs
JoseJose,
I am sorry to hear to hear about your sister. My dad never had chemo either so I can’t really say too much about that. But I would say that it is most important to keep your sister as comfortable as is possible. AS to her dry skin, perhaps applying some sort of moisturiser may help here. And the dry mouth, my dad had this as well when he was in hospice care and they gave him an artificial saliva for that it it worked really well for him, and it certainly helped with his comfort levels. Perhaps that is something that you could discuss with your sisters doctors about. We are here for you and my thoughts are with you and your family right now.
Best wishes,
Gavin
Thank you Lainy. I remember what you said about your mom which is the same case than mine. I was pretty impressed about your story, never forget about it. My mom knows but she does not know everything. I just omit the word cancer. I am trying to take care of her but she has become a sort of anorexic now, unable to eat and she is losing weight everyday. You have a good point regarding to the question of whether or not proceed with the treatment if we are actually buying not too much time for such a huge cost. However I do believe that doctors are also aware of this and they have decided to proceed which surely means that it is worthy to do it. In fact I was expecting that thay say that it was unworthy to continue but they didn’t which might be a good sign. I am awaiting CAT results in few minutes so I will also share with you.
Hughs
JoseJose, I am so terribly sorry about your sister. I am not a chemo expert but has the ONC mentioned giving her a little break? You could ask the ONC what would happen if you stopped or how much time is this really buying her. Teddy never had chemo as when the time came he asked the ONC how much time he was buying and when the ONC said a month or so, Teddy said NO. He wanted more quality of life for what ever time there was. About your mom a little story: My Mom was 94 but had some Alzheimers and in the end passed very peacefully, just age. Well, we decided not to tell her about Teddy, she loved him so much. The day of Teddy’s Memorial my Daughter stopped to see ‘Grandma” who was pretty well out of it and she passed a month after Teddy. Anyway, the lady in the next room was playing her radio and on came Teddy’s and my song. Robin said, “Oh, that’s Teddy and Mom’s song”. My Mom said, “Who died? Someone died. Who Died?” Robin said, no one Grandma. I have been saying this all along that it seems no matter what kind of state people are in they seem to know something!
I know you will let us know about your SIster, Jose, be strong!Things are getting uglier. Doctor told us that my sister has “a sheet of tumours in her liver”. She needed a paracentesis and they think that the liquid might be infected. Her quality of life has dropped dramatically. She specifically asked me to post a question of dryness in her mouth and skin, if there is any way to cope with it. Her thinking and talking is becoming difficult, sometimes odd. She has needed a transfusion to be ready for next chemo (which, I believe would be the seventh chemo so far). Things are worsening rapidly meanwhile my mom has gone into a deep depression even though she is not totally aware of what is happening to her daughter. We had hope because we saw some improvements in terms of her swelling abdomen diminished and her appetite improved. Now everything is worse, worse and worse. And I am, and we are, desperate, devastated. What can I say to her? How can I help her?
Hughs
Jose
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