Home Forums All Categories Metastatic Bladder Cancer Please read…the good days are gone

  • Please read…the good days are gone

    Posted by julieanne on October 26, 2008 at 10:04 pm

    Well, I knew it would happen and it has. Mama went to the ER last night with severe back pain and vomitting. Long story short, it took 3 rounds of morphine to make her comfortable. Scans show that (not sure how to properly say this) her lymph nodes or tumors have grown significantly and are pressing on her back. Her sodium is 120 and her potassium is 2.6 (what does that mean?). Basically they did a cat scan from the lowest part of her lung to her pelvis. Therefore, there could be more going on as well. We probably won’t see the oncologist until tomorrow. My guess is he will order more tests. She sleeps, wakes up and gets more morphine and sleeps again. It is bad. What now? Will she come home? Is it time for Hospice? Really I’m at a loss and need your insight.

    replied 16 years, 3 months ago 5 Members · 11 Replies
  • 11 Replies
  • 's avatar

    Guest
    October 31, 2008 at 2:41 am

    Julieanne…how could they send her home? I’m confused. Did they get her electrolytes in balance? Did any specialist see her at all? Has she had a bowel movement?
    Hospice may come in but if she refuses them they have no choice unless someone else has power of attorney.
    There just seem to be a lot of unanswered questions. Pat

  • Julieanne's avatar

    Julieanne

    Member
    October 31, 2008 at 2:10 am

    Mama is home. SHe is not herself ( I know big surprise), but she is worse than in the hospital. First of all, she has a UTI and they sent her home with antibiotics. She is now convinced that her back pain is because of the UTI….not. She at first refused to take her morphine at home. Got irate about it….but before long, she gave in. She is very confused and talks about how she is having trouble getting things straight and even getting her mouth to work right. I suppose it is the morphine, but it didn’t seem to do that in the hospital. She seems very sad today. She is very concerned about leaving Daddy alone when something happens to her. She also informed me that the hospice nurse was coming to meet with her tomorrow but she is not planning to use them. Someone will be there with her also. It was a good day that she came home but a sad day that I believe she is in for a long road ahead, as are the rest of us.

  • 's avatar

    Guest
    October 29, 2008 at 11:59 pm

    Julieanne……can you not get a real doctor in there?..Even the head resident? I know when i had my bowel blockage there was severe pain and lots of vomiting and obviously nothing was coming out the other end. Even though her lymph nodes are swollen have they even considered an ileus? Its been known to happen up to 6 months after surgery. And the worse thing you can do for that is give something to stimulate the bowels. Please bring this up. And the swelling of the hand…give me a break..carpal tunnel?…electrolyte imbalance can definately cause swelling of the tissues of the hand as well as other places. Can you get a specialist in there…a nephrologist…..anybody with a real degree? Pat

  • Julieanne's avatar

    Julieanne

    Member
    October 29, 2008 at 11:49 pm

    Thank you. I hope I did not appear as a “doctor basher.” I have a great respect for doctors. In this case however, I just think that in his defense, it would be easier for one doctor to make all the decisions because I’m sure it is difficult for one to keep up with the other. You are right about hospice. SHe will recieve hospice care at home.
    I did forget to mention that she is indeed having stomach pain that is keeping her from sleeping well. I guess we tend to always blame the cancer for everything, but I just think that after all the attempts at getting her to go, it might be something to check out.
    They are pumping sodium into her IV (I’m sure this is not the correct terminology:huh: ) and it still is not going up. It goes up some and then right back down. Another thing I forgot to mention is the gobs of mucous in her urine. So much that it almost clogs the line. I guess I’m just frustrated because Friday she was her usual self and now she is having more than one issue.

  • wsilberstein's avatar

    wsilberstein

    Member
    October 29, 2008 at 11:27 pm

    Although people talk about life expectancy, hospice will not hold you to any rule on that matter. Hospice is appropriate when treatment switches from efforts at cure or remission to palliative care. Pain management is a large part of palliative care. Hospice care can be done at home, in a hospital, in a rehab/nursing facility, or an inpatient hospice. Hospice should be able to help you plan the appropriate level of care for your Mom, and will help you transition to higher levels of care as needed. If you need a full time caregiver, at least in NY, while hospice will help, it is not part of hospice service and is not covered by insurance.
    Narcotics like morphine are severely constipating. Although it might be reasonable to consider a blockage given the size of your mother’s lymph nodes, a blockage would generally cause severe pain (which could be masked by pain meds) and vomiting. Obviously, Mom needs her doctors to be on top of things and carefully evaluate her status.


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • Julieanne's avatar

    Julieanne

    Member
    October 29, 2008 at 11:03 pm

    Julie-
    Thank you so much for taking the time to reply. I know you have a full plate. Here is a little update and any advice/input would be great.
    Mama is still in the hospital and this is why:
    1. Sodium, magnesium and potassium levels are still too low. Nothing seems to be helping.
    2. No bowel movement since Friday. Actually, she finally told us this has been a problem for a couple of weeks. THe doctor (family physician….quack in my opinion) has given her stool softener, laxative, suppository, some kind of drink that “makes anybody go within 30 minutes”. She has had all this within 24 hours and still nothing.
    3. Her hand is hurting and swollen. THe quack doctor never looked at it and told us it was carpel tunnel….what?????????
    Check for a blockage or anything that may be causing no bowel movement. Actually LOOK AT her hand and see what that might be.
    My questions for you are……if the tumor (lymph node) is pressing on her back and causing pain, could it not also be related to the lack of bowel movement?

    Also, we met with a hospice agency yesterday and that went pretty well. However I believe Mama may be in a little bit of denial as to what is going on. She seems to think she will return home to do all she has done before. Now keep in mind that those things included driving, canning (LOTS), lifting, picking in the garden, going to Nashville to stand at the Farmer’s Market all day etc. Not just regular day to day stuff.
    Again, I truly appreciate those of you who have posted.

  • julie's avatar

    julie

    Member
    October 28, 2008 at 7:06 am

    When Dick’s oncologist told us to look in to Hospice I took it to mean than in his evaluation he had less than six months. We did not inquire for more specifics. We interviewed 3 hospice agencies to find one that would work with Dick’s specialized situation. My understanding is Hospice is good at pain management and they will do their utmost to see that your Mother is pain free. You might want to considered interviewing a Hospice agency. They could answer a lot of your questions. Particularly the ones about whether someone should be with her all the time. From what you have said before it sounds like you are also faced with whether your father needs care as your Mother was the one who took care of him. I think we are in the grieving process, there is a phase referred to as anticipatory grief that people have when they know in advance a loved one is dying.
    When planning for continuous coverage for your Mother please make sure that the people involved can get sufficient sleep. Julie


    Volunteer Coordinator
    ABLSC
  • mel09's avatar

    mel09

    Member
    October 27, 2008 at 3:01 pm

    Julianne,
    I wish I could answer all of your questions. I know how difficult this is, especially when it seems like it is all happening so fast. There are so many wonderful people on this forum that will be able to offer you great advice. You are in my prayers.

    xoxo
    Melissa

  • Julieanne's avatar

    Julieanne

    Member
    October 27, 2008 at 2:23 pm

    Thanks you guys. I spent the night with Mama last night and the morphine is keeping her comfortable. However when it starts to wear off, the pain returns. The oncologist was in this morning and said that the nodes had grown from the size of a ping pong ball to the size of a tennis ball. He believes this is the source of her pain. Her sodium had dropped to 118 but no one seems that concerned. He did say that as soon as we get her sodium up, she can come home with pain meds. He said it is time to consider Hospice. My question to you guys is, will pain meds at home be able to keep her pain under control? Will she be bed bound? So far, she is either asleep or in pain. It is hard to process that this is happening even though we knew it would. I feel strangely calm right now. Not sure if I haven’t completely processed it or if I have been in the grieving process already. My main concern is that she has no pain. Daddy cannot take care of her. SHould we be making plans to be with her day and night?

  • julie's avatar

    julie

    Member
    October 27, 2008 at 6:08 am

    Julieanne, I am sorry your Mom is in such pain. It does sound like she needs a different level of care. I am not a good judge of when Hospice should be called in. The official guideline is whether the life expectancy is six months or less. For Dick the oncologist seemed to use his weight loss and lack of appetite as a marker to recommend hospice. x-rays later confirmed the tumor in the pleura had grown and the lymph nodes throughout his body were involved. The key will be finding what your Mom needs for pain management and hospice is the expert in palliative care and pain management. Predictions of life expectancy even at this stage is still not exact. People very even with the same symptoms and level of involvement. I wish I had more encouraging words. Julie


    Volunteer Coordinator
    ABLSC
  • 's avatar

    Guest
    October 26, 2008 at 11:20 pm

    Julieanne…….so sorry….looks like your mom has done what she’s done before
    any sodium level lower than l35 needs fast correction…Hyponatremia
    Hyponatremia is the most common electrolyte abnormality in hospitalized patients and is defined as a serum sodium concentration less than 135 mEq/L. Symptoms are due to the relative excess of water that results in overhydration of cells. The severity of symptoms depends on the degree of hyponatremia and the rate at which it develops. A patient with mild hyponatremia (sodium >125 mEq/L) may be asymptomatic or experience malaise and nausea. As the hyponatremia worsens, headaches, lethargy, confusion, and a decreasing level of consciousness may develop. Seizures and coma usually occur only if there is a sudden decrease in sodium to less than 120 mEq/L.
    Normal levels of Potassium are 3.7 to 5.2Eg/L.
    Her drop may be from the vomiting.
    They can correct this electrolyte imbalance in the hospital. I guess since she has done this before they need to determine whats causing the imbalance..renal insufficiency or what?? I’d try to get a clear picture from the attending if possible.
    wishing you and mom the best possible outcome……..Pat

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