Home Forums For Caregivers Only It could have been worse!

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  • #20961
    Jillly
    Participant

    It was a long day of appointments and then a long drive home! Vern’s wounds are healing well from his surgery, but he still has a lot of lymphedema in his leg. The drain will probably remain in place until the end of February. Vern currently has NED; however as we all know those damn little melanoma cells can and most likely are still in there. He is “at a high risk for recurrence, and subsequent death” so he will be doing radiation after he is healed and the drain is removed. Then a PET scan and he will start back on the Leukine. We actually felt pretty good leaving Mayo today as there was really no new bad news. We did a lot of walking today and that combined with the stress from the appointments has just wiped him out. But if I know him he will be up and ready to go to work in the morning!

    Jillly

    #58809
    Anonymous
    Guest

    Jilly, I’m really glad the appointment went well. You and Vern have been through a lot. So no bad news is indeed good news :) Enjoy that.

    Boy, I’d really, really, look into trying to get Vern on to IPI, maybe as a trial, if possible.

    And are you taking good care of yourself too?

    With Prayers:

    Jeff

    #58810
    Jillly
    Participant

    Thanks Jeff. We have been checking into some trials but there is nothing right now. We are hoping that after the radiation we will have good PET scan and can start back on the Leukine. I am trying to take care of myself, but I am sure you know that it is very easy to put everyone else, especially your spouse, first. If I could get more sleep I am sure that would help; I can’t seem to turn my brain off at night thinking about the “what-if’s” and “whens”. I read the notes from the visit with the surgeon and he said that Vern was at a high risk of recurrence and subsequent death. I know that is possible, have told myself over and over what can happen, but it wasn’t until I read it that it really hit home. Does that make sense?

    Jill

    #58811
    Anonymous
    Guest

    Jill, it absolutely makes sense. I went through exactly the same thing. Worry and racing thoughts, test results slamming me. Sleep was a big issue as well..still is at times actually. I’d wake up at 2-3 in the morning “looping”, thinking about stuff over and over, what to do next and what could happen.

    Counselling from a professional friend who uses EMDR (google it) was, and is, extremely helpful. This technique is used extensively now by the department of defense for our returning troops to treat post traumatic stress syndrone ( Yes, you and all the other caregivers here are in trauma to some degree). It helps you face your fears but also gives you tools to calm and cope with them.

    The mindful meditation that Catherine highly recommends is also a wonderful calming and centering technique. It helps me to just accept that I’m in distress and that it’s ok.

    And of course, there’s your faith, which for many in our circumstances, can be both seriously challenged but also a serious source of hope and comfort.

    Regarding medication for sleep, good old Tylanol PM and, of all things, Dramamine works for me. A single Zanax, 2.5 to 5.0 mg tablet before bedtime a few times a week really helped me get a break from the “looping” too, allowing for a few good nights sleep a week, which is extremely important.

    A good workout or long walk is also such a tonic for me too, a real mood lifter.

    All of these, except for maybe the workout and long walk, Vern can use as well. When Rachel felt better, emotionally and physically, I felt better too.

    I hope this helps Jill.

    Jeff

    #58812
    Jillly
    Participant

    It does help – I do have a good support system so that helps too. I am kind of used to not sleeping well, so that part doesn’t worry me. We lost our oldest daughter in 1999, so I went many years with 5 or less hours of sleep a night. I don’t worry about what will happen to Vern, because I know that Melanie (our daughter) is there waiting. As well as our parents and his best friend…we have experienced a lot of loss over the past 14 years. I worry more about his pain and how much time we have, what can I do to help him, what will happen to me, what can I do to help our children….it’s endless. I am sure you have experienced all that and more. I hope you are taking care of yourself and that things get to an easier level of bearable. It always bugged me when people would tell me that I would “get over it” after our daughter passed away. You never will …when you lose a piece of your heart, it never heals; you just become used to the pain. It becomes a part of your life.

    Jill

    #58813
    Anonymous
    Guest

    Jillly wrote:

    It always bugged me when people would tell me that I would “get over it” after our daughter passed away. You never will …when you lose a piece of your heart, it never heals; you just become used to the pain. It becomes a part of your life.

    Jill

    Amen Jill. I pray Vern gets well and your heart stays whole.

    Jeff

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