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How do you handle the bad days?

Forums General Melanoma Community How do you handle the bad days?

  • Post
    Lddaughter
    Participant

      I apologize, I feel like I have been using this board/forum as support, hope, guidance and a way to help us get through this really tough beginning. High overview, the last 2 months have been crazy. My moms masses are primarily in her liver where she is feeling most of her pain and the adrenal gland (hormones are being thrown off I am sure). They explained that the masses lay on many nerves that spread throughout your abdomen and back so they gave her high does of oxycodone to try and help alleviate the pain. That was this past Tuesday. We won't start treatment until next Thursday so until then it is just pain management.

      Well, she has been having a rough few days. Extreme fatigue (can't stay awake at all), she feels ok until they wear off and then it is back to extreme pain. She is also experiencing nausea and headaches. We are trying to time it and get the pain under control but she hates the feeling of them and the fatigue that comes with it. We are hoping that once her body gets used to them and it is working together to control the pain she will perk up. I just hate seeing her like this and I know she is having a hard time. Any tips on getting these bad days over? I hate to say it scares me but seeing her so lethargic and in pain makes me concerned. Is it smart to keep pushing food and water or should I just let her sleep? 

      Thank you for all your information, I truly appreciate it.

    Viewing 8 reply threads
    • Replies
        Michelle820
        Participant

          ((Hugs)) I would offer the fluids and food as much as you can-she need hydration and of course energy. I know it must me very difficult to eat when feeling so bad. I would ask the Dr if they recommend a liquid shake. That may be more tolerable in between rest periods. 

          Sending your Mom lots of speedy recovery and get well wishes! She is in my thoughts and prayers. You are a wonderful daughter,  and I'm sure she appreciates all you are doing for her! 

            Lddaughter
            Participant

              Thank you for the prayers. We are hoping tomorrow is a good day. She is also almost done weaning from smoking and she mentioned tonight that may be part of her problem. We are doing a shake in the morning that I prepped tonight, mornings are always much better for her if she sleeps well. I put a little whipped cream on the shake and she pretends it is a milkshake (far from it!). Hoping each day gets a little better, today was bad so it has to. I appreciate you. 

            JudyB
            Participant

              Lddaughter, We are going through this exact thing right now, severe pain, pain meds and side effects, lethargy/ constant sleeping, no appetite. Every symptom you mentioned as well as vertigo that makes it impossible for my husband to walk on own. Also oxycodone. He can't take advil, his preference (?), because his kidneys were severely damaged during a trial so it's oxy or nothing. He has decided on nothing. His oncologist has ordered radiology on two of his sites- one is a rib that his cancer has invaded with another mass directly against it pressing the kidney. Another is a very large protrusion in his abdomen that makes dressing in anything other than loose sweat pants impossible. He walks slowly, small steps, holds on to anything he can for support. The oxy is not completely out of his system yet, so today has been tough, this last week has been the worst since his diagnosis. I feel he is "gone" already, when he is awake he is in so much pain it's terrible to have to watch him suffer. I try to get some nutrition in him every two hours during the day, he's losing so much weight. If I continue very small amounts he usually does alright- fruit, broth, Ensure, Gatorade, etc. Don't let him dehydrate- he ended up inpatient on IVs once. He continues his Yervoy, one infusion left, although we know it has failed by what we can see. In the morning I take him to radiation to get the initial set up for his treatments, he will have five, and I am praying he does get at least pain relief. We've been asked about using CBD oil, we haven't yet, but it's not out of the question, some people claim they've gotten relief using it. Oxy hasn't been a good experience. Although he is stage four and progressing rapidly, neither of us want what time he does have to be spent either sound asleep and unaware, or awake in an agony. I know this is probably rambling- it has been rough and I've had many private melt downs lately. It does sound like your mother and my husband are experiencing much the same. (OH, oxy also gave him headaches as a side effect.)

                Lddaughter
                Participant

                  Oh Judy, that is how we feel. Because it is the liver the oncologist won't let us take any regular Tylenol or Advil like she has been. We haven't even started a treatment yet and are so nervous for how she will react. She is strong, doesn't want the help but I can't help myself. I have asked about CBD oil as well but haven't looked into it too much yet. Hoping for a good morning. She loses weight daily, but feels like I force her to eat.

                  You aren't alone, I had my own meltdown earlier. I just keep reminding myself that if she can't be strong for herself someone has to be. She jokes and says "ok, mom'. I don't mind, I will take the side jokes while I can. Praying for your husband and you to keep your head up. So much easier said then done though. 

                  JudyB
                  Participant

                    Thank you for your prayers, and I'll do the same for your mother and you, as you struggle in your reverse roles. It was tough for us, we've had two years to get some communication going (the doctor, social worker, and nurses helped tremendously), and begin understanding what has to happen and when. The diagnosis it tough to accept- my husband was in denial for months. So I was reading and asking questions, digging everywhere for whatever information I could find and what to expect. All the while he was telling everyone he was just fine, doing great, couldn't be better. And then he'd collapse in private, for me to pick up the pieces. I couldn't reach out for help and form a support system without betraying his confidence and saying he was not fine, but very ill. And I was in need of help. It came to a head, as it had to, and I gently explained to him that while I repected what he needs, he was not doing the same for me. After a good give and take we both were able to work together, he finally allowed me to care for him instead of stubbornly refusing me, being too weak to do for himself, and then dealing with the miserable results. He knows that he must have some fluids and nutrition, we spoke with a dietician at the hospital to find out the best and easiest ways for him to get what he needs without eating large amounts (he can't). So I'm not "torturing" him, I'm his partner and we're dealing with this together. Help him walk, tuck him in, prop him up, and let him do for himself on his good days because that is a celebration. I make him laugh when I can, I always have, hold his hand, rub his back, chide him when he's not giving his all (there's no crying in baseball- one of his favorite lines from a movie ever and it makes him smile and get right back on track). He does want my partnership now, which is my help I guess, but also my listening, my talking, my gibberish about gossip and politics and animals- we've always working in animal rescue. The latest thing I set fire to in the kitchen always amuses him. And sometimes I go in the guest room and cry like a baby, or the car. The bathroom. Today it was the grocery store in front of the bread. Just hit me out of the blue, he loves this stuff and I never have cared for it, and how long before he won't be making sure I bought it for him when I get home? Then I dry my eyes, pull  it together, and get on with it. Far from ok. I think we each come up with our own mechanisms but the melt downs must be unanimous. We have to do what we know we need to, see things we never dreamt, live it all, and I tell myself, "Judy, it is a wonder you're not as strong as everyone says you are." Yep, easier said than done. heart

                    maperny
                    Participant

                      Judy,

                      I read this and found it inspiring.  Your attitude and approach that you described has made me want to aspire to cope just like you are.  Do you have children also to stay positive for?  I must admit although I do a great job of hiding my tears from my husband (usually in the car for me), I do at times breakdown in front of my son when he displays "approaching teenager-like"  behaviour and his answering back hurts me more than it should.  

                      I try to say "there will be time for tears later"….. 

                      I am going to re-read your post often

                      Love to you, you are a wonderful wife

                      Maria

                    debwray
                    Participant

                      Hi,

                      I go through the split personality patient routine depending on if my pain is controlled . as have melanoma in spine, lungs, liver. Pelvic bone pelvic lymph nodes etc.

                      Suddenly pain became extreme last week and a full spinal assessment by MRI and will now have radiation to soft tissue met compressing nerve spine exit. They can't zap all places involved as there are too many . Anyway, got palliative/ pain control team involved in pain relief. I was previously coping with morphine, but was scared how quickly demand ad increased. Anyway specialist pain relief team are helping suggesting nerve pain appropriate drugs to be used incombo with morphine and am on day 4 of transitition. Was under medicated then over medicated and out of it…but can see benefit of introducing new drug.

                      Rambling post is just that there may be specialist teams available either through the hospital or hospice who can help. The new nerve pain drug is giving more fluid movement and once doses are settled hope I can have a bigger window of pain free and functional..and less of the comfortable but spaced out or uncomfortable and grumpy.

                      Anyway, point of the post is to say if pain management not working… Try and get to a specialist team as likely to give more options.. even if they have the unwanted palliative care pain relief label…they are the experts…and may have better solutions for you.

                      Good luck

                       

                       

                      debwray
                      Participant

                        Hi,

                        I go through the split personality patient routine depending on if my pain is controlled . as have melanoma in spine, lungs, liver. Pelvic bone pelvic lymph nodes etc.

                        Suddenly pain became extreme last week and a full spinal assessment by MRI and will now have radiation to soft tissue met compressing nerve spine exit. They can't zap all places involved as there are too many . Anyway, got palliative/ pain control team involved in pain relief. I was previously coping with morphine, but was scared how quickly demand ad increased. Anyway specialist pain relief team are helping suggesting nerve pain appropriate drugs to be used incombo with morphine and am on day 4 of transitition. Was under medicated then over medicated and out of it…but can see benefit of introducing new drug.

                        Rambling post is just that there may be specialist teams available either through the hospital or hospice who can help. The new nerve pain drug is giving more fluid movement and once doses are settled hope I can have a bigger window of pain free and functional..and less of the comfortable but spaced out or uncomfortable and grumpy.

                        Anyway, point of the post is to say if pain management not working… Try and get to a specialist team as likely to give more options.. even if they have the unwanted palliative care pain relief label…they are the experts…and may have better solutions for you.

                        Good luck

                         

                         

                        marta010
                        Participant

                          I'm so sorry to hear of your mom's situation and increasing pain.  Nothing is harder than watching your loved one in so much pain.  My husband used a fentanyl patch when he was dealing with severe pain – he was on a feeding tube so this made adminstering the drug so much easier and provided consistent relief.  Keeping you in my thoughts and prayers. 

                          Ann

                          maperny
                          Participant

                            Hi Lddaughter,

                            so sorry your poor Mum is suffering so much.  One of the things I struggle with as care-giver is what is best to help the symptoms, etc.

                            Our insurance has an on-call nurse line we can use for basic care questions once we set up my husband's "case".  Might be worth looking into that. So you could ring snd ask about your questions regarding feeding, sleep, etc

                            With your Drs or hospital, they should also have a supportive or palliative care team who you should have easy access to (I do not find ours as responsive as I would like to be honest but it probably varies).  So maybe look into that if you haven't already.

                            Thinking of you

                            Maria

                              Lddaughter
                              Participant

                                Thank you, Maria,

                                She has done better today. We are trying to work with one pain killer as needed. Two has been knocking her out. I am scared of dehydration so I "kindly" reminded her every 30 minutes this morning she needed to drink some water.

                                Our office gave us a few different numbers to try, I may have to check into those to see what may be the best route for the symptoms. The nausua pills (zofran) hasn't been as helpful it seems. I got graham crackers for her to eat with her meds but may go to ginger snaps or something else to try. 

                                Positive thoughts to you, Maria. Hope you stay strong as well. 

                              Mat
                              Participant

                                Sorry to hear.  My recollection is that you had posted about your mom starting Tafinlar and Mekinist.  Sounds like she has a heavy tumor burden (and is BRAF+) so this is a logical starting point for treatment.  When the drugs work, they work quickly–like within a few days.  To the extent that the delay is attributable to the clinical trial, I'd skip the clinical trial and ask for the drugs to be prescribed immediately.

                                  Lddaughter
                                  Participant

                                    Thank, we meet on Thursday with the oncologist and I am beggining for a treatment plan to start, anything right now. She has done better today as she is trying not to take 2 pain killers at once.  Forcing food and liquid down her throat today is my goal (ok, not quite like that but you know what I mean).

                                    Staying positive is all I can do even when I don't want to. It just seems like these first few weeks are dragging!!

                                  I have my ups and downs as caregiver too and it always follows how Steven is doing. If he is not well, then he doesn't want to drink etc and then I get worried for dehydration etc, and start pushing even more….which does not work….sigh…. very frustrating, he ended up in ER twice for weakness due to dehydration…. And when he is in a bad mood, I always will try to remind myself that its not really Steven saying this, but Steven suffering from brain tumors and loads of steroids that are changing his behavior……so do not take it personally, but it's not fun……. luckily most of the time he's just a sweetheart who is thankful for my help, love and support, even now, when he needs care for every basic need. Ttoday in the hospital ( S is admitted right now) the doc was asking him if he knew what day it was etc and he asked if Steven knew who I was…Steven said, she is the nurse…..doc thought Steven lost even more braincells, but it was a cute joke 🙂 Oh and that helps too, just make a joke if you can, that helps us a lot.

                                    Lddaughter
                                    Participant

                                      Hey Judy,

                                      I am so sorry to hear he has been admitted. I 'lectured' mom this afternoon about hydration and needing her stregnth to fight this. She gives me that look but I know she understands. She was up a lot today and got hit hard about an hour ago not feeling good. She is losing a lot of muscle so that scares me, too. I mention every day that tomorrow will be better even though I don't know if it will be. I hate trying to rationalize the way she feels with her becuase I honestly don't know. About an hour and I will have her take some more meds and drink some water and let her down for the night. Best wishes to you and your husband. Seems like you have a strong head and heart so keep it up. I know I am not alone in this even when it feels that way. Thank you for your helping me remember that.

                                      -A

                                    Hukill
                                    Participant

                                      I get through the bad days by telling myself it could be worse and there is someone out there way worse than me.

                                        marta010
                                        Participant

                                          This is so true – I recall several times when my husband was in the hospital that we would meet other patients who were far from home without the support of family members.  We would look at each other and think that no matter what our current crisis was – and we've had plenty, someone else was facing an even more difficult path.  Take care.

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