When Sleep Does Not Come

When it is 2:30 in the morning, when the rest of the world is sleeping but you have been awake since 11:30 after sleeping for 2 hours, what is there to do? In my little room in the motel, there are not a lot of choices. I have read. I have played solitaire. I have watched TV. Earlier. I think at 2:30 in the morning there would be little I would care to watch. So the screen of the TV remains dark.

Husband’s surgery will be Wednesday morning. We do not know the exact time yet. Morning. Friends will drive up to spend the day with me. Waiting. Worrying. Friends who are definitely the above and beyond type of friends. Tonight there is no need for me to stay awake. That will change nothing. But awake I am. Husband? Probably sleeping fitfully. He is worried although he does not say so. He makes comments, so I know. Offhand comments he would say is joking. But it’s not.

Today was difficult. Not today. Today has just begun. Yesterday was difficult. We know now that his fuzziness, his comprehension issues, his confusion, his shuffling walk can all be contributed to this mass on his brain. This large tumor that is an extension of the prostate cancer, the tumor that started in the skull bone and grew inward, crowding the brain. Yesterday, that disorientation, that confusion were worse. Strange – he is being given a steroid medication to help reduce the inflammation, help control the swelling of the mass. But he was just not with it yesterday. We tried walking the halls a bit, but he did not steer well. He veered. He stopped. He needed prompting to move again. Getting him into bed was a challenge. He seemed unable to move his body as it needed to be moved to get into the bed in a proper position. I do not know. Paralyzed by fear? Is that real? I don’t know.

There is a rule about doctors in the hospitals. At least as it pertains to me, there is a rule. When I am there, the doctor will not be. I waited the day of Friday after we got there, till about 7:00. After 7:00 I would expect the doctor to be at home. Not at the hospital. So I left, to pick up something for dinner. When I was in the store, that’s when the oncologist appeared for his consult. At least he and I talked on the phone, so I know he was a man with a voice, although I do not know his face. The surgeon? He was there before I arrived Friday. His PA was there Saturday and Sunday and I did see him. The rule does not apply to PAs, evidently. The surgeon was there yesterday morning as I was driving to the hospital. Driving, so I could not answer my phone, and by the time I got to the parking lot and could call back, he was gone. He is a sprite. He flits in and out it seems. Tomorrow – this morning – I shall connect my earbuds to my phone so if a call comes I will not miss it. This morning I will go in earlier. This morning, the doctor will not come in. That’s how that works.

I think I must talk with his oncologist people at home. I think I must suggest that perhaps the doctor should sometimes talk with the spouse of the patient privately. Because had we had a private conversation, I would have talked about the confusion, the shuffling. I would have asked whether somehow the brain was being affected. Perhaps then the tumor would have been found more quickly. But shoulda coulda woulda won’t change a thing.

I have been buoyed by the support – my kids, my friends, my bloggy friends – it is all so appreciated and so important. One of you said that at times like this we can be sad that the rose has thorns, or we can be happy that the thorns have a rose. Was that you, Lisa? I cannot recall. But I choose to be happy that the thorns have a rose – not just one rose, but many roses.

It is a bad time, but still – I have enough – of everything but sleep this night.

Now I’ll share with you a couple of iPad photos – one of one of the hospital chapel walls and a couple of the views from one side of the hospital. And then I shall try sleep. One more time.

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About Carol

I'm me - nothing unusual, just me. Widowed, 2 grown children who are my best friends, 2 dogs, 1 cat, retired, loving being retired. I am woman, I am strong.
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15 Responses to When Sleep Does Not Come

  1. Kathy says:

    Oh Carol, I’ve been missing you, and wondering where you’ve been but haven’t been reading blogs again recently. And to discover this! Wishing you so much strength to get through it, all of it, from the surgery to what comes afterwards. This blog post brought back so many memories of Barry’s six hospital procedures in 2011-12. If I hadn’t talked with the doctor we wouldn’t have known anything because Barry was too spacey on pain-killers to truly grok anything. But it can be so hard… It sounds like you are doing everything right and that you’re present with your whole heart. Many blessings…

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  2. sjbchamp85 says:

    Carol, I certainly hope you got to speak with a/the doctors this morning. Getting the information you want/need can be the most frustrating part of an experience such as this. Please know that you and Pat are being constantly remembered in thoughts and prayers.

    Like

  3. “I choose to be happy that the thorns have a rose – not just one rose, but many roses.”

    Carol, I admire your amazing heart and mindset.

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  4. Oh, Carol. Sending you hugs, wishes for the best, holding you both in my thoughts and my heart..

    Like

  5. Cee Neuner says:

    Carol, I’m sending both you and your hubby lots of energy and love!!! Hang in there!

    Like

  6. Northern Narratives says:

    I hope you can find some sleep and that the surgery is successful. I send postive thoughts your way.

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  7. Lisa says:

    I did say the roses/thorns phrase, although it’s not original. I heard it somewhere and I’m sure it sustained me at the time. Regardless, Worry is my biggest nemesis, and I have a hard time giving it up to God and trusting the outcome when it comes to those I love most. But that’s my prayer for you. That you have faith enough to leave the outcome to that higher power, and trust in Him to envelope you both in peace. xoxo

    And when possible, grab those doctors by the lapel and make them listen/talk to you!!

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    • Carol says:

      Lisa, the problem is catching the doctors! The nurses are quite helpful, fortunately. I try not to worry but I’m no always successful. Obviously.

      Sent from my iPad

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  8. Heather says:

    Carol your positivity is amazing. In this hard to-find-hope time, you have found not one but many, and I don’t know how you do it. I hope for myself, that when I encounter the things you are struggling with, that I can remember your strength and find a little myself.
    Perhaps the next day will bring many productive discussions with doctors. Wishing you continue to have enough. Much love, Carol, and offering you support on days when you’re not feeling so strong.

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  9. Stay strong, Carol. I remember now why I came by your site, I remember you as a strong woman. Blessings.

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  10. dawnkinster says:

    I think it’s a conspiracy that doctors work on together, to never come into a patient’s room when the family is present. Like they have family detectors in all the rooms and a central information center that the detectors send warnings to when we’re there. I’ve had the same issues. At one point we actually told the nurses station we wanted to talk to a particular doctor and we wanted to talk to him that day, and they got him to come talk to us. We just demanded after being patient for days.

    Regardless, I know hour husband’s surgery is this morning, and I will be thinking, thinking, THINKING about you all day, sending you the most powerful cyber hugs I can find. I wish you and he all the best there is and I hope this is the most successful surgery your doctor has ever performed.

    Hugs to you and him and your kids and the wonderful friends that are there with you today. Tons and tons and tons of hugs.

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  11. Joanne says:

    When the sleep didn’t come, I do hope it was a comfort to know that your blogging friends are always there, always ready to listen, any hour of the day or night. Sending warm and caring hugs to you, dear Carol, and prayers for your husband. xxx

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  12. It is so true, Carol, that the doctors never seem to be there when you are, in a hospital. You can wait for hours and just miss them. It’s very frustrating! I’m so sorry you had to go through all this. No wonder you couldn’t sleep. Who would be able to sleep under these circumstances? Hugs again. xxx

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