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End Stage Symptoms?
Posted by prayn4peace on August 18, 2011 at 5:54 amHello and thank you for your help. My mother has bladder cancer; was diagnosed in February and had some surgery to remove what was in the bladder but it had already gone through the muscle wall and the urologist said it was a very aggressive form. We went to oncologists but, at her age and with the cancer having already gone through the wall and into the tissue, we didn’t really have any options. Urologists gave her between two and four months to live. She’s now at six months from diagnosis, starting to have more pain (lower back – kidney), and the hospice doctor just a week ago said she should start watching for blood in her urine. Three days ago her urine started becoming pink and red.
She is a very positive person, always smiling and cheerful and not a bit afraid of dying. She’s up in a recliner every day writing on her laptop (she’s a writer), and tries not to lie down during the day except to ease any pain that breaks through the pain meds.
I’m just trying to get a grasp on what I should expect symptom-wise. When the blood started in her urine this week, hospice seemed to take that as a sign that things were really progressing with her cancer but I don’t know if this can last months more or what to expect. My mother is the most joyful person I know; she is in an assisted living with a hospice nurse coming in twice a week and my husband and I visit her daily.
Can someone help me with what to watch for? And, what does the blood in the urine mean at this point? Thank you so much for your help and for having this forum.
prayn4peace replied 13 years, 5 months ago 8 Members · 15 Replies -
15 Replies
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Thank you to everyone for your kind words, and Diane I hope you got my message. Still praying for you and your family.
Cynthia, it sounds like your father’s final days were so filled with love and that he went in total peace.
My father passed away in January; I wish I’d have known it was his time and would have had that time with him when he left. I’m very grateful that I’ll be there with my mom.
Thank you all for being so supportive of one another, with true loving-kindness.
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I have read these posts with tears in my eyes knowing how painful this is from personal experience. The final days I had with my father are incredibly sad memories but also cherished ones. It was truly an honor to be holding his hand and knowing that the last words he could have heard were spoken with love. We were very lucky with Dad at the end we knew he was not in pain and we were able to gather the people that he loved and that loved him back to share the time we had left with him. That is what hospice gave us and it was a great gift.
It is a natural thing when you see someone you care about hurting and knowing that they will not get any better to feel relief when their trial is over; do not feel guilt.
Losing a cherished parent is one of the hardest things I have ever faced. It has been five years for me and I do fine and can tell stories and laugh at what we call ‘Dad stories’ but then sometimes out of the blue I miss him so badly it hurts. The only solace I can give is that with time it gets better, not less deeply felt but more sweet than bitter.
I know that no words cannot help right now but know that you and yours are in my heart.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer SocietyDiane,
I am so sorry you and your family are going through this at this time. I felt the same way when my mother was dying of cancer – I didn’t want her to suffer anymore. It is hard to “let go” but a piece of you father will be with you always.
God Bless,
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07Ann,
So sorry to hear about your mum – she sounds like a great person. My dad went into hospice on the 17th of August with prostate cancer which had spread to his bones, mainly the spine. He is 88 and up until fairly recently has still been mobile. He has been on slow release morphine medication for the last sixth months with a liquid morphine ( Oromorph) which he could take if the pain broke through.Like your mum he also was reluctant to take morphine to begin with, I think he thought he would become “drugged” and addicted and that it would cloud his thinking. Please believe me , until his recent admittance to hospice, his thought processes have been absolutely clear, and until his last few days at home when the pain was no longer controlable, he has run his affairs from the sofa, made clear to us his final wishes as to his care, his funeral, care of my mum when he dies, with no signs of confusion or fogginess from the morphine.
Because the bone cancer in his spine was causing nerve compression, he has been treated with pregebalin, which was also very effective.
On the 26th August he started to deteriorate, sleeping much more and his appetite much reduced,and unable to stand , be moved to a chair, or use the toilet, and on Saturday they moved him into a room on his own.He is now classed as being in his final stages. Me, my brother and sister , and of course Mum, who has Alzheimers, are spending as much time as we can by his side. Over the last couple of days he has become unable to swallow, so his medication is given via a syringe driver , but until today with assistance we have been able to give him a drink. The doctors have said he has days only left. We still talk to him, even though he doesn`t respond I am sure he can hear us – at time he jerks and clutches at the bedclothes, but I believe that is he wants to do something maybe speak to us, but the messages from his brain are short circuiting.
I hope his time now is short, and I feel terrible to say that, but I just want him to be at peace, and without pain.
I hope this post is of help to you, and maybe it will help you to persuade your mother to accept the pain relief drugs that are available. I think one of the things that has helped my dad in the last few weeks is being assured that my mum will be ok when he is gone. If there is anything that your mum is
worrying about when she has to leave you, it is important that you reassure her so she can go in peace.
My thoughts are with you, please pm me if you want to speak more,
DianeGeorge, that is one thing that my husband and I keep saying – that we need to learn from my mother’s behavior at the end; always cheerful; always asking about the other person and never wanting to talk about her own illness. Just pure grace and joy!
You are so kind; thank you for the prayers and mine are with you, as well.
in peace,
annI will be praying for you and your husband. You are so right; what bothers me is the not knowing what comes next as I want to make sure I’m there if she has more pain or anything at all! My father passed away earlier this year but it was unexpected which is different – you don’t know that it’s coming and don’t feel like the inevitable is right around the corner.
My mother died on the operating room table one time and had the most beautiful experience so she is always telling us that she hates to leave us but she knows how very wonderful it will be when she goes and she’ll see us all again one day.
You’re so right that the people, including YOU, on this site are a true blessing. I can’t thank you enough; I’m so glad you have all of your beautiful children to love you through this time.
I Do not have the words to express the sympathy I have for both of you. Having fought for life so hard, it is tough to switch gears and realize that wonderful people die from this.
Make sure you never forget the grace with which these people lived…and died. They made a mark on this world as much as any celebrity (probably more so, as they are Genuine people). Your time together at the end of life is precious indeed, and as you go through life, remember to strive for the grace you have witnessed today.
My prayers are with you.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size]My thoughts and prayers are with you and your mother and your family also. I am dealing with this with my husband. We know it is a matter of time his Bladder Cancer was removed 2 1/2 yrs ago but this past june it turned up in his bones and was all ready stage 4 and had done significant damage to his neck bones and right hip. I don’t know how much time we have but I know it is frustrating to me not to know what is coming next. My husband is like your Mother he is very ill can’t eat much at all but he still jokes alot and tries his best to have meaningful time spent with anyone who stops by for a visit. He talks to the children, alot on the phone and always tells themhe loves them and usually has them laughing through most conversations. We have 10, his 7 my 3 all adults ages 18-51 all of whom love him and have had lives blessed with having him as a Father. Him and I have our serious talks and we cry together but I guess that is all part of this awful process we are going through. We pray that God will do as he will but ask his mercy so there will not be so much pain. For now the oxycotin cr and oxycodone are working and he is like your Mother doesn’t want morphine until absolutely neccesary because he real wants to be as alert as possible for as long as possible. I wish I could be of more comfort to you. just knowing we are not alone in this fight is a comfort to us. The wonderful people who are on this site are a blessing from God. :)
Diag. BC 8/2008
2 TURB 8/2008-12/2008
Diag. T3 BC MI
RC 3/29/2009 Indiana Pouch
Diag. Metast.BC-Bone Cancer 6/21/11
Hip Frac. 7/7/11
Hip Replace 7/12/11
Nupagen & blood trans. 7/29-8/2/11
10 HD RAD treat. HIP C2-4
Death 12/3/2011
Age 69
(Walt) Gator Bottoms.
My wife TraceyThank you, Joseph and Mike; I wish the very best for both of you!
prayn4peace wrote:
Thank you, Joseph, for your information; I don’t know how to get to it through “messaging” so am answering here. I so appreciate your help but she doesn’t go out at all anymore. Take care, ann
Hi Ann,
You’re very welcome for the info. I only wish it was of more use to you and of course to your mom.
I’m one who never wants to quit, never wants to admit to an apparently inevitable loss, and never wants to say goodbye. Though I know it’s something we all have to face sometimes.
I can’t say it better than Mike did above, so I’ll just copy his:
“I wish you, your wonderful mother, and all of her friends and family peace and comfort during this time.”Sincerely,
JosephAhhh, you said just what I needed; thank you, Mike! I don’t know why I’m even asking questions at this stage – it’s just the unknown and wanting answers where there really aren’t any. Thank you so much; what an amazing mother YOU had – and what a wonderful son she had. Thank you again.
Ann,
I don’t even know her but I admire your mother. What a lucky person you are to have a mother like her.
From your messages, my guess is that she is handling the last part of her life with all of the grace and dignity that she knows how. My guess is that she likely lived her life that way before as well and this is no great surprise to you that she is baffling the hospice folks with her fortitude and attitude.
If they say she is in end stages, then I would have to just believe it. If the bleeding is coming from the kidneys, then it is likely that the cancer has spread there.
While I am sorry for your loss, I am happy that you had a woman such as her to raise you and guide you through life.
Give thanks for the time you have had together and spend as much time with her now. A woman such as her should not die alone without having the comforting hand of family.
When my mother died at the age of 47 from breast cancer, I did not sleep for 5 days and I held her hand the whole time (except for bathroom breaks). I just couldn’t let her be alone at the time of her death after all she had done for me and our family. Somehow, after she had lost all communication (even the just hand squeeze communication we worked out) I knew it was time and called my father who had gone home for some much needed rest. He came to her bedside, kissed her the forehead and told her he loved her and goodbye. That was the exact moment of her last breath….
That was a lot of years ago and I have to admit that my eyes were already tearing up while I was typing the part about the grace and dignity of your mother and it was darn near impossible to see through the tears in my eyes when relating the memory of my own mother’s death.
I wish you, your wonderful mother, and all of her friends and family peace and comfort during this time.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Thank you, Joseph, for your information; I don’t know how to get to it through “messaging” so am answering here. I so appreciate your help but she doesn’t go out at all anymore. Take care, ann
Thank you, Mike! We don’t actually have a urologist or other doctors anymore – just hospice. I’ve asked hospice a couple times what it indicates and they keep just saying they’re sorry but she’s in the final stages. It’s just that she’s so cheerful and always says she’s “just fine”! Even her nurses tell me that it’s hard to tell with her because of her attitude so I appreciate your help.
She’s on Oxycontin during the day which really keeps her kidney pain at bay and she has Vicodan for break-thru pain. They’ve tried to get her to take morphine but she doesn’t want to.
One more question, if you don’t mind. You mentioned the kidneys and I know that they keep saying her pain is coming from her kidneys; does that usually indicate that the cancer has spread there?
Thanks so much for your help; I feel like I’m asking really elementary questions but they’re always lurking there in my mind!
with peace,
annSo sorry for the situation.
Blood in the urine could mean many things. Actually, sometimes it is the first symptom that people see even when it is at a very, very early stage.
In the case of your mother, it sounds like it was extremely advanced before they even found it all.
Blood could be coming from the bladder lining, in which case it may not really mean anything. It could be from the kidneys, which could be worse.
My suggestion would be to ask her urologist the end stage questions. Likely, the pain will get worse and the need for pain meds increase.
Wish I had more to tell you. I think it may be somewhat different for everyone, depending on where the cancer has spread.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
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