What to expect one week after treatment - 04-23-2017 04:02 PM
We are at the end of the first week post treatment. It has been awful. I know everyone says the two weeks after treatment are most unpleasant. I don't know if we were just really not prepared or what as the medical team did not paint the same grim picture of this time that the patients on this site do. I am so glad that after reading here I at least had a heads up that we were headed for a rough patch. We ended up in the ER because of dehydration and vomiting and pain that was preventing most swallowing and making him short of breath. They actually did a scope to see if he had developed an abscess or other issue. We have had issues with recurrent thrush causing throat pain. He's on meds to clear that up and preventative meds for that. When they did the scope they said the thrush was clearing for sure but of course his throat was in the kind of shape you would expect. That was reassuring. He's just in a mess. He had lost his voice but had it sort of back before this last round of treatments. It's gone again. Not having a voice is so isolating in so many ways. It is so frustrating as a caregiver. I can't do this for him. He is on fluids every other day for this week for sure. After that we will see what is needed.
1. He is experiencing more throat pain than ever at any time in treatment which is making any attempts at eating impossible even with drugs. He says his pain goes from terrible to bearable with the pain meds. He is pegging 100% of his nutrition and hydration.
2. Despite constant reminders from me and others on the medical team, he has only taken in the recommended number of calories one day since April 10. He is close to what he should be taking but says he just CANNOT get in the last feeding. He is within about a few hundred calories of the very minimum the dietician recommended number most days. He was getting them all in before this last round of treatments. I cannot figure out what has changed or if I should even be making an issue of it. Honestly, he just can't/won't eat the last feeding so my issue making is not working. When he pushes himself to do it, he ends up vomiting which is counterproductive on so many levels. He is having over the recommended amount of residuals with his peg tube at least part of the time.
3. I am planning to call the Cancer Center and ask for some direction on Monday but wondered if anyone here had any advice. He is just so discouraged. My frustration is that he has been given the advice to stay on the anti-emetics routinely. He just won't do it because he says he is not nauseated but then he vomits unexpectedly because of either constipation or dehydration. He has been told to take more pain meds but he says if he does that then he is asleep and eats even less and has more constipation potential. He has been told to take some extra steps to prevent constipation from developing but to me he resists that as well and waits until he is constipated and miserable then takes action to relieve it. He says if he is more aggressive about managing it he ends up with diarrhea which is not helpful on numerous levels. I can't help but think the constipation that manifests itself has probably been brewing and causing his issues with wanting to eat less before he feels completely miserable and increases his medications. He is on routine meds for it but not as many as they have told him to use.
4. As a caregiver I am torn. I am not living in his body so when he says he can' t/won't eat I have to believe him but there is another part of me that just wants him to do every single thing he is told to do to the letter. Just be compliant, please I want to scream. But then I realize he has lost control of so much that letting him make some choices seems only fair given that I am not experiencing what he is. The only thing I have gained total compliance about is getting the fluids. He did not do that one time and told me he would work really hard to get in all of his nutrition/hydration. He did that for one day. Of course given the cumulative effect of not doing it he couldn't keep up with just one day and ended up in the ER. So, now he is not resisting the fluids. We had a trial of Marinol with no impact. He just put on a Scopolamine patch today to see if that works any better. Before this final round of treatment we could both see him returning to work and feeling better in time. Right now he feels worse than he ever has, is beyond fatigued, is having more pain than ever and has no voice again. At this moment he says he can't see past the misery and I think he sees no hope he will recover. HIs labs are not bad except for an unexplained rise in his WBC, so and they have not yielded an explanation for this. Is this just typical and we have to slog through it? They told us during the ER visit that he probably should not be alone for 3 weeks. We had not prepared for that length of constant supervision. I have someone to be with him through this Wednesday then I am going to have to rethink things. I keep thinking that if he was getting his calories we would see a turn around. We talk about it every day but he just can't/won't. I am trying not to get discouraged myself.
1. He is experiencing more throat pain than ever at any time in treatment which is making any attempts at eating impossible even with drugs. He says his pain goes from terrible to bearable with the pain meds. He is pegging 100% of his nutrition and hydration.
2. Despite constant reminders from me and others on the medical team, he has only taken in the recommended number of calories one day since April 10. He is close to what he should be taking but says he just CANNOT get in the last feeding. He is within about a few hundred calories of the very minimum the dietician recommended number most days. He was getting them all in before this last round of treatments. I cannot figure out what has changed or if I should even be making an issue of it. Honestly, he just can't/won't eat the last feeding so my issue making is not working. When he pushes himself to do it, he ends up vomiting which is counterproductive on so many levels. He is having over the recommended amount of residuals with his peg tube at least part of the time.
3. I am planning to call the Cancer Center and ask for some direction on Monday but wondered if anyone here had any advice. He is just so discouraged. My frustration is that he has been given the advice to stay on the anti-emetics routinely. He just won't do it because he says he is not nauseated but then he vomits unexpectedly because of either constipation or dehydration. He has been told to take more pain meds but he says if he does that then he is asleep and eats even less and has more constipation potential. He has been told to take some extra steps to prevent constipation from developing but to me he resists that as well and waits until he is constipated and miserable then takes action to relieve it. He says if he is more aggressive about managing it he ends up with diarrhea which is not helpful on numerous levels. I can't help but think the constipation that manifests itself has probably been brewing and causing his issues with wanting to eat less before he feels completely miserable and increases his medications. He is on routine meds for it but not as many as they have told him to use.
4. As a caregiver I am torn. I am not living in his body so when he says he can' t/won't eat I have to believe him but there is another part of me that just wants him to do every single thing he is told to do to the letter. Just be compliant, please I want to scream. But then I realize he has lost control of so much that letting him make some choices seems only fair given that I am not experiencing what he is. The only thing I have gained total compliance about is getting the fluids. He did not do that one time and told me he would work really hard to get in all of his nutrition/hydration. He did that for one day. Of course given the cumulative effect of not doing it he couldn't keep up with just one day and ended up in the ER. So, now he is not resisting the fluids. We had a trial of Marinol with no impact. He just put on a Scopolamine patch today to see if that works any better. Before this final round of treatment we could both see him returning to work and feeling better in time. Right now he feels worse than he ever has, is beyond fatigued, is having more pain than ever and has no voice again. At this moment he says he can't see past the misery and I think he sees no hope he will recover. HIs labs are not bad except for an unexplained rise in his WBC, so and they have not yielded an explanation for this. Is this just typical and we have to slog through it? They told us during the ER visit that he probably should not be alone for 3 weeks. We had not prepared for that length of constant supervision. I have someone to be with him through this Wednesday then I am going to have to rethink things. I keep thinking that if he was getting his calories we would see a turn around. We talk about it every day but he just can't/won't. I am trying not to get discouraged myself.
Had fluids, labs which were much improved and even worked a little in the AM then slept all PM which I supported! One good day can take us a long way. The only two things we changed were putting on a Scopolamine patch and having the 3rd day of fluids. Whatever made it happen, I am taking it with a grateful heart. At one point he said today, "I am not tired." I have not heard that in months. Then he took two naps which I consider totally normal for this stage.