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#162334 03-04-2013 09:29 AM
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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

CALLYGIRL #162336 03-04-2013 10:42 AM
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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.)


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



CALLYGIRL #162337 03-04-2013 10:50 AM
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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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






CALLYGIRL #162338 03-04-2013 11:10 AM
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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


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
CALLYGIRL #162344 03-04-2013 03:55 PM
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Cally - steriods can cause anger/mean-ness.. please have him talk with his doctor or the rad nurse


Joanna - caregiver (spouse) Init bio 11/12, gloss/neck dis 12/12, rad/cisplatin - 6 wks 2/13

"The most important thing is to keep the most important thing, the most important thing."
CALLYGIRL #162420 03-06-2013 10:18 AM
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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.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
CALLYGIRL #162424 03-06-2013 11:08 AM
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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!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
CALLYGIRL #162861 03-15-2013 01:47 PM
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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.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
CALLYGIRL #162868 03-15-2013 03:35 PM
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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.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
CALLYGIRL #162913 03-16-2013 05:37 PM
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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.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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