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new here
Posted by spysir on February 14, 2009 at 12:17 pmJust surfing the web for information and found this site which seems a decent resource. I am sorry I dont know all the terms yet please bear with me,
So far, off and on again HEAVY bleeding for the last 11 or so months, CT showed abnorma; mass on anterior wall of bladder, a Uro scoped me “nothing” not a fun test which caused extreme bleeding for more than 48 hours. Then last month again due to heavy bleeding now with pain another CT same result. Referred back to Uro but he had retired (good in my opinion) so I saw a different Dr in the same office. I was again scoped (only heavy bleeding for 12 hours this time, who-hoogo team) and he said “you have cancer”, in regards to my CT he said “I could’nt get my machine to read it”, “I dont need to see it”, “it wouldnt make any difference” . I am scheduled for a cystoscpy (sp) on Feb. 16 in Cookville TN.
Now what really bothers me most is my Uro’s office (and the Uro) “dont have time” to provide any information to me, I mean none. They know of no support groups for patients or familys/providers, they could not suggest any resouce for bladder cancer information, none. When I asked about the Internet for information they said “not to read any of that stuff” Uro got rather pissed when I asked how many of these procedure he had done, on and on. Pardon my grip please.
Hopefully by the end of next week I will have lab results from the scraing procedure back and will post again then.
Any links to information, advice, other would be most welcomed.Thank you,
JB
TR1492 replied 15 years, 7 months ago 10 Members · 39 Replies -
39 Replies
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Savvy – I know what you are feeling. Tomorrow is 6 months since my dad died from bladder cancer and all the emotions are rushing back. It is amazing how quickly this disease can change everything. In mid-November, we believed that he was cancer free and he died 6 weeks later.
As my father was going, we had lots of talks and you will be surprised about what your mother deems important. My main concern was the fact that he would not get to see his grandson grow-up (he is only 18 months now), but his thoughts were only of my sister and of me. To make sure we were ok – to make sure he had done his job, to know how proud of us he was, how much he loved us. I asked my father if he would help me – if he would take a very special job – to watch over my son as he grew up and I truly believe he is doing that.
These kind of talks can give both of you peace.
Your life will never be the same – I can guarantee you that – but keep in mind that your mom will always be with you.
T.R.
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Savvy, I hear you….cancer sucks. And now you have to take some time for yourself and your mother. Time to hold her hand, and tell her how much you love her, and how much you’re going to miss her. Tell her how much she means to you, even if it doesn’t seem like she’s listening. It will matter to both of you.
She may rally a little after her body starts to shake off the effects of the Alimta, and you may have a few weeks of time to spend together. Just because she’s coming home to hospice doesn’t mean that she’s leaving you right now.
Here’s a tip: set up a caring bridge website for family and friends, and let them all know about it. Then, you can post all the things you want people to know, they will get the news right away, and can send their wishes. They won’t need to bother you with calls, and if there’s something you need, (like space and peace), you can ask for it. You’ll be surprised at how helpful it will be having a central gathering place for your family’s information. Go to http://www.caringbridge.org, and set up a web page, put in whatever you want to share about your mom, and then send links to family. Whenever anyone asks, refer them to the site, and you can save your energy for yourself and your mom and dad.
Hospice will have some great information for you, once you get through the admission paperwork. Lean on them, and listen to their wisdom. Try to hear what they’re saying, instead of what you want to hear. Really listen to your mom. You’ll be glad you did.
from one who is eternally grateful for every moment we shared, even the hard moments at the end.
Stephany in Iowa
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for nothing left to loose, everyone gains freedom sooner or later. Sorry to hear the news but try to relax (yes I know how it is) and give love and recieve love. Remember there is no fault in your situation this is just life.
My Grandmother lived three years too long, my good friend JohnnyG just last month decided he would like to check out on a Thursday, that was all he wanted for some reason,on a Thursday and he got his last wish. They both still live in my mind as they always were and I am glad I was with them both as long as they wished.
You are not alone in your feelings.John
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Hello all,
it’s been a long, lonely week in the hospital. We’ve spoken to the doctors and they’ve basically told us we’re at the end of the rope. Her blood counts dropped like crazy after a single dose of the Alimta and she had positive blood and urine cultures. it seems we’ve dodged that bullet for now, but it made it clear she can’t tolerate more chemo at the moment, if ever.
So the doctors are telling us we’re at the end of the line. We’re going on hospice. Home to die.
five weeks ago I was driving home to see my mom through a colon surgery not related at all to her cancer, and was hoping to get to a wedding dress fitting and then back to school the next week. Today I’m going home with her on hospice and posting my wedding dress on ebay. What the hell just happened? -
Savvy I know how aggravating it is to keep having to go to the hospital. My husband kept having pneumonia.
My understanding from hospice is they follow the medicare guidelines which are palliative care only no treatment. This is why we deferred Hospice for a month and a half. My husband wanted to continue to get the Epogen to keep his red blood cell count up. Hospice called that treatment and his hematologist said it was symptom management. I had to get that straighten out before he could start. We used a home health agency to do the blood draws and the Epogen shots. Chemo would be regarded as treatment I suppose unless someone stated it was for pain relief.It is not selfish to ask your Mother what she wants to tell you. You can ask it would give her something to focus on. If she is uncomfortable with the idea you can defer it. She may want to instruct you and your Dad on the financial situation. About the only thing you can do for your Dad is to be there. This is a heartbreaking event and there is no way around it. This is something he will have to face himself. I can’t say that anyone made the loss any easier and they had there own feelings of loss also. The best thing was we did not have any conflict about medical care or the arrangements for donating his body to medical research, or the Memorial Service. I have heard stories from family and friends about quarrels with family members and those have to be minimized.
What we do when we know a loved one is dying is anticipatory grief. You and your family are going through this and it is like being in a crisis. Slow down, keep things simple.I can’t predict how your Dad will do. He may develop the ability to take care of himself. Many people do. I had to learn how to live as a single person. After being a team for 48 years it is not easy but I am doing it.
Julie
Volunteer Coordinator
ABLSCIt turns out that she has a huge pleural effusion on the other lung now and we’re waiting for them to drain it. another complication. Every time I think I’ve got her home to heal a bit and get back on her feet to enjoy what’s left of her time, we’re back in the hospital. It’s so frustrating.
We spoke briefly about hospice. My two sisters were in today. I was able to take time off of school so I’ve assumed primary caregiver role, while my twin went back to school 3 hours away and my older sister back to work an hour away. They came in today to ‘celebrate’ father’s day for my dad. He’s working full time.
We’re going to have to talk to hospice, and if they require she not be on the chemo we’ll have to consider it. I keep thinking of what she’ll want at her funeral, what we’ll do for my father, where all their money is and what to do about their house, all these thoughts. She is the main financial planner in the household.
I can’t believe I’m facing my mother’s death at 24 years old. Do you think it would be selfish to ask her to write down things she wants me to know about raising my own children? I don’t have any but I always thought that we’d experience that together and she’d help me through that.
Do the spouses out there who have lost someone have ANY advice on what loved ones did that made it easier? My dad is very quiet, reserved person who believes in God and doesn’t question Him, but is still so heartbroken. He always relied very heavily on my mom for everything from financial guidance to picking out his shirts and ties for work. What do I do for him?Thank you all for your replies.\,
your words are so kind. We are on the way to the hospital as she has another pleural effusion on the other lung now. My father is crying non-stop. I think he’s slowly coming to terms with things. will keep you updated.Savvy,
I just sent you a PM with contact info should you desire, I live in TN and have had some dealings with Hospice throughout the years please feel free to call or email day or night. Caregivers need support too. I too am sorry to hear about your Mother.
The Hospitals here sometimes (but not always) ask if I have a “living will” heck NO – I have an advanced directive, 10+ pages of legaliese and nothing else will do. I grew up in a family which openly acknowledged death is a part of life (The meaning of Life is the time spent between birth and death) and have been the person who sat with several friends untill their end and while is doesnt feel a natural, happy, or even nesisarily good thing at the time I am happy that I (someone) was there for them doing what could be done for their quality of life.
Also someone noted this post “may” be in the wrong spot to recieve maximum
responces/help and it may get moved however for the record I personally have no problem with where it is posted as long as you find some amount of support.John Blount
Savvy, I just read your posts. I can appreciate the anguish your family is feeling. My husband had metastatic bladder cancer. From the time we found out that the cancer had gone into his ureters and renal pelvis on both sides until he died was about 20 months. I was going to write about all the setbacks but you don’t need to ready anymore tales of how everyone does the right thing and still the Cancer prevails.
It takes time for this type of news to sink in. There is no right or wrong way to live with cancer. When my husband first was diagnosed with Bladder Cancer we decided to borrow a phrase from the AIDS patients. We are living with cancer. Don’t focus on OMG I’m dying.
Help your Mother figure out how she want to live from now on. What trade off does she want between alertness and the effects of narcotics for pain. Pain management is a big issue. Plus the constipation that morphine causes is intolerable for some so it may take some time to get the right pain medications and what to do to stay ahead of the constipation.
I don’t know that Dick ever got ready to die. Mostly he used distraction such as playing games on his DS Lite or iPhone.Feeding was a big issue for me. I would get frantic when Dick wouldn’t eat or take his medications. I learned that the cancer can cause some issues with nausea. I had to learn to not get so wound up as it just made everything harder.
Take a deep breath, take several, and slow down. You don’t have to make all the decisions at once.
You don’t mention how many people in your immediate family. is your Dad around, do you have siblings? Is everything being asked of you because you are in med school. In this instance you are a daughter in need of support not a med student. You can also ask for a social worker from the cancer center and they can help you sort out a lot of these issues. I did a lot of talking with the social worker at the hospital in preparation for the interview with hospice. I needed to be clear about what they could and would do. I had always thought we would use Hospice early in the process and it turned out he was with hospice for a month and a half. They helped provide services to us in the home. They also had a respite facility for brief breaks and and a hospice facility for people who were not able to have care at home. So there is a range of services. They had a volunteer who came and sat with my husband several times while i got away for an hour or two. We got a lot of support from the nurse and a health aide who came in and gave him a bath.
It is wearing to try and do it all. Don’t expect it of yourself.
Please keep posting, asking question, and let us know what is going on. You may also want to join the chat on Sunday evening at 8 p.m. Eastern Daylight time. It lasts about an hour and people will listen. Julie
Volunteer Coordinator
ABLSCAnd that’s one thing that hospice can help with….the planning, the discussion. The quiet peace that can come with being able to talk about it openly.
Either way, think of it as a gift that you can give your mother…..the ability to talk openly about her wishes, and her feelings. A gift that your whole family can share.
And you don’t have to do it alone. They will help.
And we can help, here at the site. Keep on writing, and asking questions, and listening to what the writers have to say. My husband was only 61 when he died. Julie’s husband was not much older. And they were on their retirement journey.
We can’t take away the pain, but we can listen. Let us help with that. And try to sleep. Remember, asking for help is a good step.
All of the time I was trying to write this, I was chatting on the private chat room with another cancer widow. That kind of experience is so valuable, and you’ll find lots of experience here. Not for dying, but for living well.
Stephany in Iowa
I just don’t know how to do it. How do you get ready for her to die??? i can’t do it. I can’t admit that she’s not going to see me become a doctor, won’t see her grandchildren, and probably won’t see me get married.
I think she’s praying and believing the Alimta will work still. But even if it does I don’t know how long it will buy us.
She’s only 64 years old. How do you come to terms with the fact that she’s dying? How is that possible? And how do I sit my family down to get them to realize this? no one wants to face that. We all just desperately want one day away from cancer, not to get into that conversation. I can’t do it.GuestJune 21, 2009 at 4:21 amSawy..Vanderbilt is an excellent bladder cancer facility and i know the
alimta is a last ditch try. But if she is refusing liquids and foods and the hearing of voices probably means the kidneys are not doing their job either at this point. She’s probably going to have to be admitted to hydrate her. I would definately let the doctor know what is going on at this time.
I’m not sure how all Hospice works. I know here in Ohio it strictly palliative care.
PatThe most important thing I think I can tell you right now is this: you said that if hospice comes, there’s no hope. And that is not true. With hospice comes hope, because hospice makes it possible for you all to take a deep breath and talk to each other about management of all of the symptoms. There are patients who go in, and out, of hospice, depending on their symptoms and disease.
Hospice would make it possible for you to have the discussions with your mother, and your father, and make plans about how to manage the disease, instead of reacting to it. If your mother is not eating, and only sleeping, she may have already made decisions that she needs to talk to you about. And whose hope is the Alimta providing? For your mother or for your father and you? Is she taking the drug for you or for herself? These are questions that you could be discussing.
At least talk to hospice in your area, and find out what your options are. Especially if the family is trying to provide all the home care. That is what they are really good at. And maybe it only means that you have someone to talk to who has already been there. Each patient is matched with a hospice volunteer who understands the situation, many times because they have been through the same situation, and really wants to help someone else with the same things.
When my husband took the Alimta, I can tell now that he did it for me. He really wanted to stop fighting. He was SO tired of all of the complications and the symptoms, and he wanted peace and quiet for himself, but he put himself out for our son and me, so that we could feel that we were doing what we needed to do. We finally did contact hospice, but I do wish we had done so four or five months earlier. He was only in hospice for a week, and so I speak from experience when I tell you that I think it would be a great relief for you to be able to step back and see the situation from a different perspective.
My husband’s cancer metastasized from his bladder to lymph nodes in his neck, and then to his abdomen and lungs, but it was all the same bladder cancer cells. He only lived five months after the mets diagnosis, but we had time to prepare for his death, and had many discussions about it. It was a relief for all of us to discuss it, and we had no regrets, either about his treatments or his prognosis. I only wish I had stopped fighting it a little earlier, so that I could have had peace earlier. I think that hospice would have helped with this. The local chapter was wonderful.
I wish you peace and comfort on this lonely night, and I wish your mother peace and good sleep. Keep us informed and let us help, if we can.
Stephany in Iowa
Thank you so very much for your replies. I know you know how much it means just to know someone else is listening whose “been there”.
My mom had a ileostomy with her RC so that she did lose some terminal ileum. This was done by Dr. Rodney Davis at Vanderbilt in Nashville, TN. Her oncologist gave her B12 shot two days before the chemo infusion.As far as hospice, I’ve thought of it. I really have, not so much for my mom but for me. I don’t know what to do if I’m to go back to medical school on July 15th and there’s no one to take over, which is why I’m considering taking the year off. And even if I do I still need someone to help. The emotional drain is exhausting enough.
But it’s like no one wants to admit that we’re at that point. If hospice comes, there’s no hope. And I don’t know if she’s ready to go off the alimta, as it represents her only active fight against the cancer, and taking that away takes hope away.
However, I know you’re right- the fatigue is incredible. She’s starting to hear voices and is no longer a part of life. She’s sleeping ALL day and I have to fight (and I mean all-out arguments) for her to just drink some protein shake.
I guess I need to have that serious conversation with her doctor. He is always so optimistic, but I worry he’s not realistic. If he’s not going to be realistic, who is? None of us want to admit the harsh reality.
Some more details about her: she had diffuse abdominal carcinomatosis with right pleural effusion, and I’m pretty sure I hear a left pleural effusion developing. Nothing in her liver or within the lungs themselves, no bone mets that we know of. Of course, her last pet scan showed none of this so we wouldn’t know i guess.
Where had your husband’s cancer metastasized to? How long did he fight this? No one is giving us a clear prognosis and I know that’s hard to do but we need to know. My dad keeps asking me and I don’t know what to tell him.Savvy: My heart is heavy for you and your family. I just happened to link to your post. I think it may need to be relocated to a different thread, and I’m hoping the administrators will take care of that, but right now I want to respond directly to your post.
My husband was prescribed Alimta in the last stages of his metastatic bladder cancer. His doctor was quite succinct with us, and told us that there was a 30% or less chance that the drug would extend his life and impact the quality of his life. We did decide to proceed with the treatment, but the Alimta made him so dreadfully tired that we did not proceed with the second treatment.
Looking back, I am sure we made the right decision. I wish that I had held a magic crystal to tell me future during that dark time, because I would have halted the treatment sooner, had I been able to understand that his quality of life was more important than pursuing treatments that had very little chance of working.
After you have had a chance to talk with your mother’s doctor, really talk with him, and what he sees in the next six months, I would recommend talking with your mother, and get in touch with hospice, which will give you much needed respite. Hospice is not for the dying, it is for the living, and for living well, in whatever stage of the disease you find yourself. They can help you in the planning with your mother. And if your mother recovers, they will drop out of the picture. But right now, you need their help and support. They are just a phone call away.
And now for the wedding plans. If you want to share the wedding with your mother, you might need to change the place and date, but decide what is most important for you and your family. If you want your mother to be able to share the joy with you, then make that happen.
Please keep in touch with us here at the website, and let us answer any questions you may have.
Stephany in Iowa
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