*** Below is a small book about all kinds of tips to help patients and caregivers. Every patient is different! The info below may or may not apply to every single patient but its all generally helpful to most.***

Connie, just so you are prepared, patients going thru rads almost always end up needing help in one way or another. Your husband is very lucky he has you!!!! Although he says he feels lousy, he still is in the beginning stages of treatments. The hard days are down the road. It wont be long before he starts to really notice the effects if treatments and wish he was back to the first week of rads where he actually didnt feel too bad. Hopefully he is able to see how much he depends on you and what a great caregiver you are. Some patients can get pretty ugly during rads and during their recovery. Many are under the assumption when rads ends, they will magically be well in a day or 2. This is NOT even close to how it usually goes! In the past I have broken it down to a very general guide for caregivers so they're ready for when the treatments get difficult. I am NOT telling you (or anyone else reading this) to cause any worrying or anxiety. Its so much better to be prepared instead of drastic changes happening seemingly overnight.

Patients can go downhill very quickly, especially when they are not meeting their daily minimums for calories and hydration. As treatments continue patients will feel progressively worse. Only around 10% of OC patients are lucky enough to sail right thru rads with barely any side effects or pain. Those lucky few Ive noticed over the years usually do not have chemo and are the ones who are going above and beyond on their daily intake minimums. But Ive also seen a few patients getting chemo with their rads do exceptionally well, again its almost always those who are hitting and exceeding the daily minimums of 2500 calories and 48-64 oz of water. Patients who are overweight will incorrectly think it doesnt make a difference if they're skimping on their intake as they could stand to lose a few pounds. WRONG!!!! That type of thinking will catch up to them sooner or later. Losing large amounts of weight during rads/recovery can make the patient feel lousy. They are not just losing weight... they're losing muscle too! Its next to impossible to get muscle back when its gone. Plus this also will make the patient feel weak, worn out and notice significantly less stamina so even something as simple as climbing stairs will takes more effort. Intake and weight are such a huge part of getting thru treatments and recovery that even patients considered obese need to work hard to avoid losing weight. Ive noticed patients who struggle pretty much right from the start with losing a few pounds here and there eventually begin losing several pounds in only a couple days time which is a signal their skimping is catching up to them. If you are able to speak to your husbands medical team and ask them to notify you if your husbands weight loss starts to become a problem. If your husbands weight loss is anything like mine (lost over 32% of my total body weight) he could lose 100 pounds or more in about 2 months time which is not only very unhealthy but dangerous too.

Patients during the first 3 weeks of their treatments patients should still feel pretty good. Unfortunately not all patients will be feeling ok, for an unlucky few they will feel lousy right away in the first week or so. Those doing the 3 big bag chemo will start having nausea and possibly diarrhea around 10 days after the chemo. For some it hits them hard!!! Even a few sips of water can trigger their nausea. The nausea is so bad they must take prescription anti-nausea meds around the clock even if they think they are ok. When they stop the anti-nausea meds they quickly will see they are not noticing the chemo's side effects as the meds were working. The worst part of not being able to keep things down is everything that comes out must be somehow put back in... plus their daily minimums. This is very, very hard to do!!! If he isnt able to keep anything down, even meds your husband may need the prescription anti-nausea meds in suppository form. Definitely not fun but if it helps control his nausea then its a necessity. During the worst of it, getting extra hydration helps to avoid dehydration. If the doc hasnt already done so, ask for a prescription to get extra hydration when you notice your husband starting to drag and you know he isnt getting close to even half the minimum daily intake. For your individual situation this wont be easy to know how much your husband is taking in but the scale doesnt lie. Being he is around 300 pounds he probably needs even higher daily calories during rads and recovery phases, Im guessing at least 3000-3500 calories daily would be enough. Just around the end of the third week of rads, most patients feel a little better but then its time for more chemo and in 7-10 days the nausea and other chemo side effects will show up more prevalent than their first chemo. Right from the start patients should be using ointment on the red areas caused by rads and doing mouth exercises several times a day. I'll explain more about this in the next section. If the patient is starting to feel lousy during the first 3 weeks, try to give them small daily goals so they can feel like they're accomplishing things. Every single person needs a reason to get up in the morning, they need routines and to feel useful. Walking the dog, vacuuming, getting the car washed, cleaning the garage, organizing the attic, or other light duties help to keep patients busy doing positive things that can help to keep them motivated and from worrying too much. Ive found staying busy is a wonderful way to divert attention from the "what if's" to more positive thinking. I used to clean out my closets every time I started thinking "what if". I moved to doing dressers then my kitchen when I started running out of things to organize. Next was reading books that kept my attention helped keep my mind off feeling sorry for myself.

Phase 2, weeks 4 and 5 patients going thru rads will notice their sense of taste has changed making almost everything taste bad. Patients will describe their sense of taste as everything tastes like cardboard, charcoal, burnt, overly spicy or salty. They also will begin to notice swallowing isnt as easy as it always had been. Swallowing is something very important so even if a patient is strictly getting their nutrition from a feeding tube they still must keep swallowing even if its a few sips of water every hour or so. This keeps the swallowing muscles working. If patients have not yet begun doing mouth exercises the doc or nurse should have gone over with them, they will start noticing their mouth doesnt open as wide as it did before starting rads. Once patients lose their mouth opening flexibility, its not easy to get back. Some find the Therabite device or Dynasplint trismus systems are helpful. If insurance doesnt cover it, they are quite pricey! Some patients have physical therapy along with their rads and recovery to help them retain their mouth opening as much as possible. PT helps patients who have had neck dissections to regain as much mobility as possible. Many will notice the skin on their cheek, neck are starting to become sore. Some patients have open weeping sores that are painful. Every single day from the beginning of rads, patients should be applying ointment or some kind of skin cream to help with the rads effects, its kinda like a bad sunburn that gets worse as they go along. Make sure if they havent begun using the ointment to do so immediately. Pat it on and let it soak in but NEVER apply before going to rads as it could effect their treatments making them less effective. Common over the counter aquaphor, vaseline, or other thick healing ointment or cream should help. Ask the doc for a prescription to get beta-val ointment/cream or any other type they would recommend. Mouth sores usually become more bothersome so the magic mouthwash probably will get used more. Manuka honey has been scientifically proven to help with the mouth sores. From the feedback received from our members this works wonders. Theres many versions of manuka honey. The darker, thicker, and higher concentration means the more expensive it is and the better it will work. Talk this over with doctors to see what they recommend would work best for your husbands situation. Heres a few sites to read more info about it...

Manuka honey info website, OCF does not endorse or promote any specific place to buy

Livestrong, Manuka Honey

Healthline site, Manuka Honey Info

Make sure any prescriptions given have refills on them. Any controlled substances used will have special rules that go with them. They must have a new prescription and will not have refills so every month the doc needs to give another prescription. Patients should notice a small round bald spot usually located right above bottom hairline on the nape of the neck. Thats where the radiation beam exits. Hair will eventually grow back but not right away. Men notice their shaving much less facial hair as well. Most patients will start becoming more fatigued and sleep more. They may also suffer from insomnia. Too much on the mind can impact this as well. Below is the link to our main OCF site. You will find many, many more pages of important, helpful and most importantly correct medical info including anything and everything from symptoms to diagnosis to treatments including info delving deep into types of rads, to nutritional support for those with or without feeding tubes, complications and even risk factors. Far too much info to include here...

Oral Cancer Foundation main site, Understanding

Theres a million other things I could touch on but I think this already is far more info than most people want or need to be prepared. When I first started writing this I kept thinking of more and more things then before I knew it I had written a small book (SORRY!!!). I hope you find this helpful!!!