Hi all. I hope your all doing well today. This site has quickly become the most visited website for me. I can't believe the wealth of information I have found. Something came up and I really wanted to hear from real people if this is something you have dealt with. My bro is the final part of his chemo/rad therapy. Its been very hard on him and I see him declining daily, but on the upside his prognosis is really good so we are all hopeful this will work and he wont have to ever deal with these treatments again. Now onto my question, he hasn't spoken in weeks now and he relies solely on his PEG tube for all nutrition and hydration. I went to see him this weekend and was surprised to see just how mean he has become. I know alot of it is frustration and I know he feels terrible and has said the pain is unbearable. With that being said, he is just mean and cruel. When we visit he acts like we aren't in the room and when you try to talk to him he grunts and points to the door basically telling us to get out. Now keep in mind, I know for a fact this isn't typical of him, through all of this he has been so sweet and kind and just thankful for the family around him. Just wondering if anyone else has seen their loved one turn into this other person. I know he is dealing with alot and I don't let it bother me (at least in front of him) but he is treating everyone with so much contempt and I can take it but I don't think my parents should have to, they are elderly and taking care of him full time and have put their lives on hold to make sure he is always as comfortable as possible. I don't know. Could it be the morphine? any insight you might have would be helpful. Thank you!
CALLY

Hi Cally - It is definitely frustrating getting through treatment and meds can have an affect and cause personality changes in a person. It really should be checked out with his doctors. My son did get grumpy at times but not to any extreme. I know other caregivers on here have experienced this with their patients and I'm sure you will be hearing from them. Your brother should not be taking out his frustration on his parents. It's a difficult job being a caregiver especially when they are so closely related and love him so much. I do hope your parents will understand that it could just be a reaction to meds he is on or maybe his nutrition and hydration are off a bit. Sometimes the patient needs a little "tough love" or a caregiver who can put on her "nurse from hell" hat on. When my son became obstinate and refused to eat or drink - I said to him:"Look, Paul - I am doing everything I possibly can to help you get through your treatment, but I cannot do it alone! You HAVE to help me out a little here!!" He was better after that, but I cried all the way home in the car that day. (also - Maybe you could get a look at his prescription bottles - they usually have info about possible side effects.)

Cally, I'm glad your brother's treatment is doing good cancer wise. Even though he is relying on the peg, he should still try swallowing something, water, and exercise the mouth, tongue, jaw, and see a speech and swallow therapist, and a nutritionist to ensure adequate nutrion, and hydrarion, Some exercise are listed on the blog by Charm, I made several links to iswallow, showing, explaining at least 15 exercises, after medical clearance. As far as the mood, you say this is out out character. Cancer has an emotional impact on everyone from fear, treatment, pain, physical appearance change, being dependant in others, depression, loss of work, income, and suggest counseling, and some may need meds to help cope. Pain medications can also change ones behavior, as well as decadron, a corticosteroid, used with some types ov chemo, can make one more aggressive, even any chemical imbalances in the body. Maybe a support group meeting for H&N cancer, which many states here, a little walking fresh air dies wonders for the mind.

Another factor is being in constant fight mode to fight cancer, even insurance, and proper medical care, it sometimes gets mixed up where to end it, and often taken out of the ring, and on other people. Mostly I was quiet as a mouse, but could change to raging bull, If someone got in my way, made any slight towards me or was irritating.

I guess it takes a village to treat cancer, and it's difficult to do it alone.

Cally,
Try reading some of the information you are finding on this website to your brother. When you are near the end of treatment you are so low physically and mentally that it is hard to see that where you are now is not what you will forever be. It does get better!! He needs to know that there are long term survivors out there that have gone on with their lives and the side effects from this slash/burn/poison method of treating cancer are ones you can live with! He needs hope right now that he can make it to the end and learn to enjoy life again! Read him some of our success stories! Best to you - Kris

Cally - steriods can cause anger/mean-ness.. please have him talk with his doctor or the rad nurse

Yes - maybe your parents could mention his behavior change to the dr. I was seen weekly at the rads clinic for a check up with my radiation oncologist, and difficulties should be mentioned. And he needs to be reminded to swallow, and truthfully, he probably knows he's being mean. It is likely the frustration and the drugs, but his pain should be under control. If its not that should be address. The most important thing you need to do (not your parents because they are probably too stressed) is go visit your brother. Make a point of telling him you feel bad, but this is not your fault. He has to stop taking his anger and frustration out on you and your parents. And finally one of the major reasons people are forced to live on a tube after treatment is over is because radiation damages the muscles used in the swallowing reflex if you do not continue to swallow, even little bits of water you could very likely lose it all together. So tell him if he wants to feed himself from a tube for the rest of his life - go ahead - be stubborn. Some people, have had so much radiation to save their lives that they know it will be a trade off, and some don't know that not swallowing will cause this until it's too late. Another group has no choice, based on surgeries etc... He has a choice right now to do whatever he can to get back to as close to 100% as possible. It's very doable. But it's up to him.

actually print that and all the other advice given. maybe then he'll get it. I have a husband, but I also have a nursing background and my hubby leaves the medical knowledge to me so I knew before going into treatment, that he would supply the food and what not, but I would be the one who had to motivate myself. SO I refused to indulge in a pity party, and did what I had to do. Period. That way if things didn't work out.. the only person to blame was ME.

you know the old addage... you can bring a horse to water...

well give him the knowledge and support, and make sure he knows he has to follow through on his end of the bargain.

hugs! you're a good sister.

Im so sorry to read your post about your brother! As a patient, I understand how bad oral cancer can be. Im sure he feels awful from being malnourished and dehydrated, plus taking strong meds on top of not being able to speak. All of that adds up to one miserable patient. While I do understand and empathize with him, I also feel there is NO excuse for that type of behavior.

I have already given you detailed info about the importance of hydration and nutrition while going thru oral cancer treatments and recovery. That info is very important and will determine how easily he will get thru treatments. At some point the patient must be responsible for themselves and their actions. If he chooses to ignore advice given and not focus on his nutrition and hydration then he will struggle. While he is suffering it is not fair to take his frustrations out on anyone. Many patients will go thru a period of adjustment where they blame everyone and everything for their situation.

I do see all sides of this and know how difficult it is being the patient and going thru the brutal OC treatments. The caregiver has an even harder job, they must do everything for the patient and still try to maintain their own life at the same time. I truly believe it takes a special person to be a caregiver, someone who is unselfish and caring that also has a backbone to stand up for the patients best interests. Not an easy job at all! But to have the patient be rude on top of everything they do for them, thats just not right.

I suggest printing out a bunch of these posts and leaving them for your brother to read (or mail them to him). He may not even realize he is being so awful. He could be so caught up in his own pity party that he has not stopped to think of anyone else's feelings. Battling OC is difficult for everyone not just the patient, but also the caregiver and entire family. I hope he can understand others are working hard to help him and could use some empathy too. Try your best to overlook his rudeness and keep doing what you are doing. Its NOT you or your parents that he is angry with. A therapist and anxiety meds would be a very good idea to help him deal with his feelings.

Good luck!!!!

The mental fight against cancer can surely cause the anger. As well as the pain meds, and steroids as others have mentioned. My husb had some serious personality changes over the course of treatment. It was so hard to not take personally, and the docs did give him some anti anxiety meds to help him a bit.
Definitely communicate the feelings to the docs as I'm sure your brother is just focused on getting rid of the cancer and not so much about his moods.

Not being able to speak was the hardest thing for me, even though it was only temporary. I hated that people didn't understand what I was asking for (itchy foot, kleenex, etc.), and got very frustrated with them. I simply couldn't help myself. When I was able to speak again, I told my parents that I could understand how a stroke victim felt like...You know what you want to say, but you can't make yourself understood. It was the first time I cried during the whole process, when I explained that.

When I got bitchy a friend snapped back at me, and I realized how poorly I had been acting and felt terrible. The tough love worked for me.

Good luck.

Hi Cally

yes anger and the behaviour you are describing is not uncommon. I described my Alex as turning into a 2 year old tantrum throwing child when he was in treatment.

Like you, I examined all his drugs and tried to find a reason. Alex was definitely depressed, and anti-depressants helped later after therapy finished.

Alex also returned to better than normal once it was all over but even today, 3 years on, the old tantrum throwing 2 year old makes an appearance on check up days. I put it down to Post Traumatic Stress.

Whilst I truly believe the Traumatic Stress reaction is real, I also think that the chemo drugs have something to do with it. The chemo definitely caused confusion for Alex and his lack of concentration was so severe, he could not follow a simple conversation at times. In early dementia, we see sudden flashes of anger and even violence as the patient is lucid enough to realise something is wrong but not able to determine what it is. I think we are seeing the same thing in our loved ones when they are undergoing cancer treatment. The good news is that, unlike early dementia patients who can only go downhill, Alex recovered completely. Confusion and memory loss recovered in degrees over 12 months although the anger disappeared almost immediately after treatment finished.

When I was going through this with Alex, I did not understand why he was lashing out and took it quite personally. I also tried to set boundaries (if he abused me, I left the room after telling him his behaviour was unacceptable) which was a complete waste of time. Alex said later that he knew he was doing it but was unable to control it so any consequences made no difference at all. Like your brother, Alex is one of the most considerate people I know so this behaviour came as a complete shock.

I don't think you have any choice but to roll with it and remove yourself when it gets too much. But please know the behaviour is normal, not personal and it will get better.

Hi Cally, everyone above gave great advice. Martin towards the end of treatment went quiet. Didn't moan or anything (which was worrying, he always moans about something), but before tbat he went through a mean phase too. I could keep him fed and watered and make surei looked after him and took him to his treatments, put him on the nebulizer. But I did really know how to deal with what was going on in his mind. I think he should have seen a councillor, to vent some fears and anger. Even Martin now says he should have done then. Your bother might halso be having trouble dealing with everything and is taking it out on the closest people to him. Maybe you could suggest talking to someone, he'll probably say no to start with but suggest again. It might help. Good luck.

I am a survivor and I can relate. I through my paper across the room and I don't remember it. The nurse told my mother I had a bad night, I was in ICU, and I was given a clip board to write on. My left arm was in cast and stuck in that blue thing to hold it up straight. I only had my right are and trying to hold the clip board and write was soooo frustrating. Some nurses are so caring and would hold it for me and others would just ignore my struggle. Anyway, I accused this person of making it up, I would never do something like that and I do not remember doing it. It was definately meds that allowed me to behave so terribly.

On a different note, my mother was my caregiver, shes older and does not handle stress well at all. She would come into my room telling me all about her fight with my daughter and blah blah blah. Please remember that the patient is dealing with things you will hopefully never understand. She would stress me out so badly, I would literally want to plug my ears. The gossip and the judging that came from my large family was unbearable, It damaged a few relationships permanently, and I don't feel that I can discuss my story with my family. Please don't think you know how the patient should cope, this horrific disease does not come with instructions. One sister, sent me two letters 6 months after my radiation with the "tough love", telling me to quote, "get off my ass and stop feeling sorry for myself", unquote. I was having panic attacks and severe depression, remember, your survivor is going through hell, they are having to say goodbye to the "old them" and coming to terms with the "new them", they are trying to cope with the "new normal" that they now have to live with. No, he should not be mean to anyone, EVER, I'm simply suggesting that you talk to him, not at him, talk to his doctors, and most importantly, try to find out if he's depressed or has any issues that you are not understanding. Most importantly, do not judje him, he is coping to the best of his ability. Mental issues are a big area of concern with this type of cancer.