guess I should post this and follow the suggestions!

I am the spouse of husband diagnosed 6 weeks ago. He started chemo and radiation on Monday. He will have 3 chemo treatments and 35 radiation. I"m kind of a health nut so this stuff makes me a little squeamish. He smoked for years, grew up in a chain smoking family and then chewed tobacco for 22 yrs and probably still is chewing as we are finding cans in his car and on the bed.

I came here because I like to be informed and hear other points of view and treatment. His comment to me over the years has been: As long as there is a pill, I will not change my lifestyle. Now his pills are radiation and chemo. Not sure how this is going to turn out for him as this is very new territory for both of us. I'm here to learn!


Stage 4 A not sure if HPV or not (he never asks)
age 56 yrs old
smoker for many years and grew up with lots of chain smokers
chewed tobacco and probably still does
35 treatments of radiation
3 chemo treatments (every 3 weeks)

Welcome to OCF, Connie! Im sorry you have a need for our services. Dont worry, we will help both you and your husband as much as possible with info and support. Spend some time reading both here and on the main OCF site. Theres tons of info in both places. By reading and learning more about OC and its treatments you will become a stronger advocate for your husband.

Where is your husbands tumor located? Being he has been a long time tobacco user, theres a very good chance his cancer was caused by using tobacco. If he is still using tobacco he needs to completely eliminate tobacco of all forms from his life... permanently!!! Treatments for oral cancer (OC) can be a difficult for both the patient and caregiver. By using tobacco, it just make things even harder for him. Your husband will need to depend on you to get thru this.

Make certain you discuss with him the necessity of focusing on his intake and meeting (or even better, exceeding) the daily minimums of 2500 calories and 48-64 oz of water every single day. I can not stress enough how vitally important your husbands intake is!!! You will know if he is making his minimums or not. If your husband starts losing weight thats a sure sign he is not making his daily minimums. Going down that path can lead to being hospitalized for malnutrition and/or dehydration. I was so bad at keeping up with my intake I struggled and suffered wayyyy more than I should have. Back then I dont know if I was in denial or just too stubborn to admit

Make sure you also talk to your husband about any change he has with his hearing. If he is given cisplatin as his chemo, it can permanently affect his hearing. Cisplatin is the go-to chemo for OC. Even if he hears a slight buzz or high frequencies sound different he needs to report this immediately to his medical oncologist. His chemo can be switched to something else if he experiences any or the side effects I mentioned. The 3 "big bag" method of chemo may be hard to handle. Many patients get a smaller 2nd dose and the 3rd one reduced or eliminated completely. Your husband needs to make certain he drinks extra water the day before, the day of and at least the day after he gets chemo. The nurses will give him extra hydration along with the chemo. This does not mean he doesnt have to still drink extra as mentioned before. Chemo can be hard on the body, especially the kidneys thats why its so important to flush that poison out of his body.

Being a caregiver is not easy! Make sure you are taking some time just for you. Even if its a quick walk around the block or 2, taking a car ride, getting a mani/pedi, going to a movie or out to lunch with friends are all ways to temporarily take your mind off your patient and the cancer. Every week do something to be good to yourself.

Theres a million more things you will learn from OCF. I do not want to completely overwhelm you by bombarding you with everything all at once. Hang in there!!!

thanks for all the information! I do appreciate it. This is a tough situation as I have little relationship with him but will be his only caretaker. I like to be informed and on top of things so this forum will be helpful for me.

Being the spouse and caregiver can be difficult to juggle. On another post you mentioned family is far but you have lined up some helpers? As rads continue they get progressively more difficult. Most people genuinely want to help and yes, it does take a village. Anyone who offers your husband help should be added to a list of names with their full contact info. Tell the generous helpers when the time comes you will let them know what they can do to help. Theres all kinds of little things that can be a big help while someone is going thru rads. Picking up prescriptions, walking the dog, cutting the grass, taking out the garbage, grocery shopping, laundry, cooking a nice dinner are all things, driving your husband to and from his treatments are all things another person can help with and will help to make this easier on you both.

At your husbands treatment center you should ask what other services are available to patients. There may be counseling, nutrition sessions, patient/survivor groups, etc. There may even be financial assistance available for medical bills but often this is not offered unless someone asks about it. Theres far too many medical things doctors need to cover often forgetting to mention other things their facility offers to help patients. There may also be a wall of brochures available and the facilities website should mention other helpful things available.

The American Cancer Society (ACS) offers a patient driving program where cancer survivors and caregivers will drive cancer patients to and from their appointments and treatments. This could be a nice break for you with being the only caregiver. Its takes a while to get it set up so if you are interested call 24/7 the ACS. Ive used it myself and couldnt believe the generosity of someone I never met driving me 45 minutes each way for my treatments. I became am a volunteer driver myself and helped other cancer patients in my area.

good information! I have driven people to their appointments in the past...acquaintances. Help was requested. We live an hour each way from the treatment center. I requested help for 2 dates already as I have to renew my real estate license soon...no response other than my family 500 miles away who can't really help. I will get more aggressive with his co-workers as soon as I sign up for those classes. This week, he is driving himself but we've been told he might be able to do that for 2-3 weeks but not so likely after that....with the caveat...every person handles this differently so we don't really know.

I will check into the ACS info as I will need help at times with the driving. thanks so much for all the information.

The key to how well your husband does thru treatments is how well he focuses and meets (hopefully exceeds) his daily minimum for calories and water. Some patients begin to struggle during their first week of rads while others barely notice a scratchy throat until their radiation course is finished and they begin their recovery phase. What your husbands doc said about week 2 or 3 is right about when most OC patients will start noticing changes and the side effects. The patients getting chemo with rads usually have a bit of a harder time.

The 3 "big bag" method of chemo usually hits most patients about a week to 10 days after the dose is given. At that point if you husband gets nausea he can quickly become dehydrated. Remember every single thing that goes out MUST be replaced along with the daily minimums. This usually hits when the doc said, week 2 or 3. AT that point he will need to take anti-nausea meds around the clock even if he begins to feel better. Some patients will also get either constipated or diahreah on top of the nausea which can make the patient feel even worse. Nausea can be very sneaky so watch closely your husband closely to see if he develops any of those side effects!!! You may have already been given a prescription for your husband to get prescription anti-nausea meds. Its a good idea to get that filled now so you have it when he needs it. Hopefully he will not have much nausea but its always smart to be overly prepared (if thats even possible?). I used to take along a bag of all my meds everywhere I went just in case and a few times I had to dig into my stash while away from home. Some patients found either emend, compazine or zofran worked for them in keeping control of the nausea. I had a very bad reaction to compazine ... restless leg syndrome. Id seen those commercials and kinda chuckled to myself thinking no way could that really be a medical condition. Boy did I get a surprise when it happened to me. I just could NOT sit down, it was horrible, like my legs had a mind of their own and they wanted to pace back and forth no matter how the rest of me felt. I was practically sleep walking I was so exhausted from pacing for hours after taking that medicine. My doc switched me to zofran which worked the best for me, in fact I still need to take it even now sometimes.

Did you already call ACS? I wasnt sure if thats what you meant when you said "help was requested". ACS still will have volunteer drivers who can help with transportation. I lived 45 minutes away from my treatment center and the drivers drove at least 45 minutes up to my house, took me 45 minutes down to my treatment, drove me 45 minutes back to my house and another 45 minutes back to their own house. To me that was absolutely amazing how generous it was of the volunteers to help me when I desperately needed it. I suggest getting the paperwork started right away as your husbands doc needs to sign some things and it may take a little until you can get onto the request transportation list. Even if it is only one day a week someone takes him it will help to give you a break. My son was 17 and had the responsibility to drive me back and forth which is alot for a teenager. Being able to give him the day off was such a relief!!! Plus I found talking with the drivers who were cancer patients/survivors and caregivers to be very helpful. The volunteer drivers were all so kind and understanding plus they went thru it themselves and knew how rough it can be. It was nice to go by myself and talk to people I didnt know but still had a common bond so it was almost like finding out a stranger is really an extended family member.

Hang in there!!! We will help get you both thru everything.

I was referring to myself answering the call to drive others to treatments.

My husband is already not eating,not sure about drinking.He shuts himself up in the bedroom which he has done for 20 yrs. I put a small fridge in the room so he could have some soft foods or drinks at hand. he had no interest in it. I hate to say this but he is probably shutting down which is typical for him.He takes a lot of depression meds already and has for decades. He hasn't recovered from the pain of the feeding tube inserted 10 days ago. Frustrating to not know if pain is real or not. He purposely has skipped meds because he wants the nurses and doctors to see how much pain he is in. This is going to be a long haul.....I continue to read and learn. thank you

Im very sorry to hear more about your husbands behavior!!! I will be completely honest with you. This is going to be a long difficult road, especially when patients are not 100% committed to listening to every single thing their medical team and caregivers ask of them. I hope his medical chart has every single medication he takes, doses, strength of the medicine and what time he takes them noted. Juggling meds is something that could easily become life threatening. When on strong medications its difficult to remember when the last dose was taken or how much they took. At some point your husband will need to face this head on and accept help from you and his medical team. Nobody gets thru this alone! Those who try doing it alone end up suffering greatly due to their own stubbornness. Or worse... they stop their treatments when the going gets tough which lets the cancer continue to grow and will be fatal. What scares me most from your reply is your husbands habit of locking himself in and aversion to follow doctors orders. If he doesnt nourish his body it does not have the capability to properly heal, not eating and drinking will turn into some much bigger problems down the road. The minimum calories needed are 2500 and water 48-64 oz every single day. Right now he should be practicing with his feeding tube and trying to adjust his lifestyle to using the feeding tube. Its a very easy way to get the required daily calories and hydration while watching tv or sleeping. If your husband paid attention to his intake and got the daily minimums he would begin to feel so much better.

In the past Ive seen a few patients similar to your husband with their behaviors. Sadly they went thru some difficult times as a result of their own actions. At some point their caregivers pretty much told them shape up or they wont be able to help them anymore. Doctors have told them similar things and many of these overly stubborn patients unfortunately had to learn the hard way that people really were doing their best to help them. Yes, you are correct, this will be a very long haul for your husband. Im concerned about current tobacco use, that will only make the whole process so much harder to do and can make the cancer much harder to treat. I hope he will come to his senses, do some deep soul searching then get on board starting with a change in his usual routine. He needs to put a real effort into getting thru the cancer treatments and recovery, it is NOT easy and those who are not commuted to it will struggle. This isnt something anyone can do half way!

Take care of yourself! We will help you as much as possible.

I did see that the nurse wrote down all of his prescriptions and whether to continue them. He already took a lot of prescriptions so was glad to see a chart.

I will see if he is willing to eat anything tonight. He did have to meet with the dietitician today and radiation doctor so it sounds like they are staying on top of things on their end.

I make him a bone broth smoothie using heavy whipping cream and some organic applesauce. He says food sounds awful to him.

Food probably does sound awful to him ... being that sick and in that much pain, food is just a pain in the neck. Literally, in this case. But it needs to be dealt with. This is where the tube can be handy, annoying as it may be for him to use (and frustrating, if he hates feeling reliant on anything). I would never have kept up any calorie count without my feeding tube, and I never did reach the goals Christine suggests, though she's absolutely right that they're essential. And mood is affected by poor nutrition, which just compounds the problem. (Ask my husband, poor guy.)

Sounds like you're as on top of things as you can be, and he's lucky to have you as a caregiver. ((hugs))