he was supposed to do an IV drip today to get fluids in him as he refuses to drink anything. The nurse wouldn't let him have the drip as he had too high of a blood pressure reading. He did not ask the numbers but said his blood pressure has been lower throughout this process. I would think as the doctor ordered the IV, he needs it. Maybe his bp is high because of dehydration???
any insight on this?
Connie, my thoughts are exactly the same as yours! Your husband needs to ask about these sorts of things!!! Im sure he is not feeling the best but he must pay attention to this sort of thing. He may not have his BP that high, some patients run high while others run low and for them its just how they are, its normal. Your husband needs to be his own advocate at times and ask about a nurse refusing his fluids. Whats the doc say about that? If it was me who was supposed to get fluids then when I got there the nurse refused them Id want to know why and have it explained to me so I had a better understanding of how this sort of thing can get changed by nurses. I suggest talking to the doc right away and getting to the bottom of why fluids were not given. Yes, you are correct... dehydration can wreck havoc on blood pressure readings.
he finally got his IV yesterday. I guess he did ask what his bp was and said it was 190/100. I've had mine go well over 200 in times of high stress so I know it scares the medical community but I survived and it came back down. They should have given him the IV on Friday as prescribed.
What's the oddest thing of this journey so far is that he feels better at week 5 than he did at week 1. Maybe he is using some of the meds offered? I don't know. the bad thing is his dog companion got run over tonight and had to be put down. Talk about a kick in the gut on top of all this sickness.
Watching someone suffer is really wearing me down. It's emotionally exhausting as I wouldn't wish this on anyone. As the nurse said day 1....this is the worst thing we could do to a human. I've been through a lot of tough stuff in my life but this awful and he's feeling pretty good these days. It's still awful.
Im very glad to hear your husband has had his hydration yesterday!!! This is a very important "pick me up" to those patients who are struggling to take in enough fluids. Try to get his doc to give your husband the IV hydration the day before and after his chemo too. This will help to flush that poison out of his system.
The dog being put down must have been a terrible tragedy to everyone! What a loss!!! Im an animal lover too and know what a special bond our pets have and how they enrich our lives.
he's getting IVs every other day now. He swallows about 20 oz of water a day so they told him to add pedialyte to his feeding tube. Because he does not drink enough, he is getting constipated. He has to add miralax twice a day and magnesium citrate until he gets the constipation under control. He has had 23/35 radiation treatments.
He told docs today that he was done with this treatment. Oncologist asked if he should pull out pics to show of what it looks like if he doesn't continue treatment. He said no. I said no...even though I was in dentistry, I don't want to see them either! So husband said he will finish out the last 2 weeks. Crazy thing is he isn't even taking any pain meds and we are near the end of the 5th week. He said his pain was a 4 or 5. Docs couldn't hardly believe it. I will say his body is really wearing down just the past couple of days though. He thinks he looks 80 yrs old. He doesn't but he said he doesn't recognize himself in the mirror. He has lost 30 lbs. I bought him a new smaller shirt tonight for something new to wear as he wears the same shirt every single day.
just an update. it is getting really weary for me to hear someone coughing, hiccuping and moaning day and night though. Hard to hear someone suffering.
Friends are getting me out of the house since I can't help him. He just has to get through this.
If he's managing without pain meds, that's still impressive ... and also not a bad plan since most of them can be constipating as well ... I have to monitor that myself, with my own meds. If he goes for those, make sure he increases fluids accordingly.
And again, ((hugs)) to you.
I just love how your husbands doc managed the "Im finished" statement!!!! I also attempted to quit when I was towards the end of my rads but the nurse and my son refused to even discuss it and said I was NOT allowed to quit. Rads gets progressively more difficult as time goes on. With 2 more weeks to go and the first 2-3 weeks of recovery being the worst of this, he still unfortunately has a bit of a rough road tile he can begin to feel better. Even if he had gotten away with quitting now, he still would feel progressively worse for a few weeks before he will start feeling even slightly better.
I agree with Kristen's pain meds comment. Yes, it is very impressive that your husband is able to go without the heavy duty pain meds most of us have used to get thru rads. Make sure your husband is being 100% honest with his docs and if he is in pain he speaks up and talks freely with his team. If he would need strong pain meds, the fentanyl patch works the best for most patients. BUT!!!! That kind of heavy duty pain killer will only work out for patients and caregivers who follow every single direction to the letter. If your husband wont follow all directions exactly to never to bend, fold, cut, rip, tear or otherwise compromise the integrity of the fentanyl patch and no long hot showers or baths while using the patch he could run into some MAJOR problems. We have had some members who innocently were soaking in a nice relaxing hot bath with the fentanyl patch on and they ended up in the hospital for nearly OD'ing. The long hot baths can interfere with the patch's time release function so all the medicine instead of slowly releasing it over time. Make sure your husbands doc and nurses are fully aware of your husbands dislike of playing by the rules. From what you have written to me it sounds like they are fully aware of their patients traits and are able to effectively handle them. The best thing about the fentayl patch is how easy it is to use, just peel off the backing and place it in a new spot every 72 hours, no measuring or checking if its been enogh time to take another dose of meds. The patch slowly releases pain meds so patients have a nice even dose.
Gosh, yes, I wasn't even thinking of the patch and its special issues ... good call, Christine! The instructions on that always make me so paranoid! But it sure helps. Also, doing any of those things while trying to apply it can cause some of the med to wear off early (you get it on your hands or whatever, and then you wash off your hands if you're following protocol) so it's not as potent. Connie, when I finally broke down and begged for help ... because even though I'd admitted pain, they weren't acknowledging how bad it was ... they gave me a shot in the office and then sent us home with a Fentanyl prescription. It was a lifesaver, truly. I was using my regular meds to get through stuff (I have some tough meds anyway for migraine and such) but it wasn't enough for radiation burn. At least, not for me.
he was refusing pain meds as constipation makes the pain around his feeding tube painful. his mouth...not so bad yet.
He can't keep anything down even from the feeding tube. so 3 times a week, he gets the IV fluids. He is in the fetal position in the car ride 2 hours a day and in bed. He is usually up and ready to go early to treatment. Today, I had to wake him right before we needed to leave. He just wants to sleep all the time and I don't blame him.
Yesterday was the first bad day. He was worse in the first 2 weeks, then had a couple of good weeks. It's been a roller coaster.
thanks to my support team above!!!
he was refusing pain meds as constipation makes the pain around his feeding tube painful. his mouth...not so bad yet.
He can't keep anything down even from the feeding tube. so 3 times a week, he gets the IV fluids. He is in the fetal position in the car ride 2 hours a day and in bed. He is usually up and ready to go early to treatment. Today, I had to wake him right before we needed to leave. He just wants to sleep all the time and I don't blame him.
Yesterday was the first bad day. He was worse in the first 2 weeks, then had a couple of good weeks. It's been a roller coaster.
thanks to my support team above!!!
The doc takes pictures at the beginning and during and after of people who refuse treatment. Sounds morbid but I see that it's a good idea. Some need that wake up call.
Should the feeding tube be painful? (Christine or somebody?) Mine mostly wasn't, and when it did hurt badly, we determined it had to be replaced ... it had mis-seated itself inside or something. (And that pain was at an I'm-gonna-die level.) It's not comfortable, but I'm not sure painful is the word either. I know we all react differently, but that makes me nervous. Though the constipation makes sense. To this day, that's where I hurt the most when I have tummy issues, and I'm all healed up.
What kind of feeding tube does your husband have? Most patients begin with whats called a PEG tube. Thats a single tube directly into the stomach. Im asking as there is one type of tube (J/G tube) that has an inner post that goes into the intestines which may be something bothering his stomach but thats not used very often and its pretty rare for it to cause issues especially since its been ok for weeks.
Constipation should NOT cause feeding tube pain. I know constipation can make some patients very uncomfortable. If he's using the feeding tube, ask his doc if you are allowed to add things to the formula your husband's taking. Is he using bags and the pump to deliver the formula over several hours while hes relaxing in a recliner and or sleeping overnight? To me, thats the easiest way to do feedings... no bloating, stomach aches, etc. Remember your husbands medical team is available 24/7 even in the middle of the night and on weekends. Dont hesitate to call them if you see dramatic changes or your husbands condition declines dramatically and he isnt lucid. Watch for fever too. If the feeding tube site is red and has discharge around where it goes into his body that could cause a very nasty infection that requires medical attention. If you ever feel your husband is "too far gone" for you to manage his care dont be afraid to call the docs and if you think you cant transport him to the hospital an ambulance or people to help you with getting him to the ER. Malnutrition and/or dehydration can hit patients and hard!!! I felt so bad when it happened to me I thought I was positive I was starting to die. Pay attention if possible to if he is still going to the bathroom (#1) as thats a sign of dehydration too... you cant pee if you arent taking in enough fluids to do it. His constipation/feeding tube pain could be something to pay close attention to! I forget if your husband gets visiting nurse check ins or not but if he just all of a sudden got much worse he could need an ER visit. I have to remember he is not on pain meds either so its possible he is just feeling the effects of everything pretty much all at once.
Theres so many little tricks that can help make feeding tube easier and the formula easier to tolerate. Usually patients develop problems tolerating the formula due to the delivery being too fast and the formulas too thick. Almost all issues are helped by slowing down the rate of delivery and watering down the formula. Constipation can be helped with adding fiber to the formula, even if it already contains it. Check with doc before making any changes to what your husband has already been doing.
Im sorry to hear your husband is starting to feel the effects of the rads!!! The ups and downs are what many patients experience. Most patients hit the wall towards the end of rads when they begin feeling really bad. The nausea, fatigue, mouth pain all seem to hit them and they're staying in bed 15+ hours a day. This is what led me to be hospitalized for malnutrition and dehydration the first time. Everything caught up to me and I started staying in bed 20+ hours a day. I set my alarm to go off a few minutes before my kids came home from school then went and sat watching tv on the sofa so they didnt know Id been sleeping all day. Pay attention to just how much your husband is sleeping and taking in as the more a patient sleeps often will directly correspond with what hes taking in. Same with his weight... its a sure sign he is NOT doing what hes supposed to do if hes losing weight like crazy every week. Right about now is when intake becomes the most important and if the patient is playing the "make-up game" then they are heading down the wrong road. If he skimps on his daily minimum numbers (at least 2500 calories and 348-064 oz of water) this is when you will really notice it with lower energy levels and weight loss. Many patients (myself included) have thought, tomorrow I'll do better and make up what I was short today. WRONG!!!!! Tomorrow never comes as the next day they will feel even worse from skimping on intake and its even harder to take in enough. This quickly becomes a vicious cycle leading to hospitalization to get them back on schedule. Patients have also been known to be sneaky about it. I considered many things to help hide my weight loss... wearing progressively heavier clothing and shoes may work a couple times but his medical team Im sure are right on top of everything with him so they'll notice this. One patient when I first started would put rocks in their pockets before heading to their rads (and the scale). I had considered doing that myself to get the nurses off my back about my intake. They started weighing me every other day and then daily as I quickly went downhill losing weight even by the day. One important thing most patients do not consider is along with losing weight they're also losing muscle which can be almost impossible to get back. Luckily your husband is still getting hydrated every other day! This may need to be changed to daily if he continues to get worse.
Hang in there!!!! This is almost over then let the heeling begin!!!
Because he is struggling with constipation, everyone on the medical team thinks it is why his feeding tube bothers him and it has bothered him from day 1. I had noticed he was rarely going to the bathroom for several days this week. I haven't asked if the constipation is gone or not. He's sleeping most of the time and I just let him. I figure his body is trying to heal and weekends are a big break for him from treatment.
The ENT doc did tell me his stomach is full of marble sized cysts probably from years of taking prescribed meds for indigestion. They were not cancerous. But I can't figure how he could eat much from having probably 100 of those in his stomach. I saw the pictures from afar.
He does have the PEG tube. I just wonder if the above complications are an issue for not being able to keep much down. Not sure. That's why they increased IV fluids to 3 times a week though, he just can't get enough to stay down.
He has lost 30 lbs in 5 weeks. I don't know if that's good or bad. They are not concerned about it much. He started at over 300 lbs and while that doesn't matter really, he will not be skin and bones at this rate.
We do not have any nurses or anyone to check on him. We live 1 hour door to door from the cancer center. I know he calls them often about stuff and they tell him that it is going exactly as everyone expects. Of course, this is old hat to them, new to my husband so he worries.
My allergies have kicked in again. Not sure what is coming out of his body or respiration but my eyes have been matted shut the last 2 mornings. I apologized and told him I have to wear a mask around him. I can't pinpoint the allergen but it's most obvious there. With my long history of illness due to this reactions, I have to take care of myself. One of my friends commented on how sick I used to be...I thanked her for acknowledging that and saying I'm not crazy!
I notice he is up and about a bit more today probably from the radiation break and fluids yesterday. The past 2 days, I would look in and see him in the fetal position.
I have 2 real estate classes right next to his cancer center this coming week but I'm having a friend of his drive him those days so he can get home and get back into bed quickly. I just can't get away from driving to that very neighborhood in West Des Moines 5 days a week! I'm actually looking forward to listening to someone drone on and on about Law and Ethics for 2 days. Sad but I long for the days of a "normal" life again. I'm fortunate that some people on the private fb group have commented how they understand the difficulties of being a caregiver and I so appreciate that. I'm not dealing with the pain, but I am dealing with the stresses I don't even tell him about like my son whom I was close to calling me abusive for raising him in a Christian home. Really? 2 of my 3 children (1 living at home yet) have deserted me through this journey. My oldest is 31 yrs old and he has stepped up to the plate so I'm thinking it's the maturity level kicking in. Most people have no idea of how horrible all of this is for caregivers and patients. I did not buy a front row seat to this journey but I hope I take all of my learning/experiences forward to help someone else along the journey in the future.