I'm a caregiver

I am sorry that your brother has joined our very exclusive club. You must be a wonderful sister, taking such good care of him. 

Treatment can be harsh. It sounds like radiation is hitting him hard. I had an awful time with radiation, lots and lots of pain. I was talking to my Radiation Oncologist the other day, and he said that most of his crc patients don't suffer so bad, but I bet there are allot of us out there. 

There was a time when I really though I could not take it any more, but I did and now its all over. 

I could tell your brother that it will all be over soon, but when you're going through extreme pain, words are not much help.

You have found the right place for support and advice. We're all here for you and for your brother. And then, one day (and soon) you will be here for others. 

Blessings!

I'm so sorry that your brother (and you) have to go through this.  I've been both patient and caregiver (for my sister) and neither role is easy in any way.

If your brother has a lot of anxiety, that seems only to be expected.  Does he have a prescription for something like Ativan?  An anti-anxiety med is a good tool to have in the cancer-fighting tool box.  If medical marijuana is available in your area, this also can be very effective.  Both drugs also work well for any tx-related nausea that may develop.

The other thing I would suggest is to have him take the OTC antacid medicine called cimetidine (brand name Tagamet) for a couple of weeks before and after his surgery.  There is some research out of Japan that suggests that this drug is able to reduce the ability of cancer cells (esp colon cancer cells) to attach to surrounding tissues during surgery.  This is one of several routes by which the cancer can spread, and cimetidine is pretty much in "can't hurt, might help" category, esp with short-term usage.  he would need to to talk to his surgeon about it so that he can get prior approval to be given the meds post-surgery.

My surgeon had never heard of it, but was fine with me trying it (I printed out the article linked below and took it in for him to read).  May have just been a coincidence, but I only used this stuff on 5th surgery, and that turned out to be my last, so I do like to mention it to people as something to throw in the mix.

https://www.lef.org/magazine/mag2009/dec2009_Preventing-Surgery-Induced-Cancer-Metastasis_01.htm

JenCo said:

Thanks for responding!

Thank you all for responding to me...I was so excited to see that I had three responses! I am feeling supported already! I can't tell you how comforted I am now that I have connected to this support group. I just made a profile space in the 'WhatNext" support network tonight. I think it will be a great help to me too! Yes, my brother was prescribed an anti-anxiety drug to help with the anxiety. He has gotten much relief from taking it. I will have to make a print out about taking the before and after  surgery medicine and have my brother and parents read it. I am not sure if my brother will think it is a good idea or not but I will share it with him so if he does want to try it he can. He has done chemo and radiation first before his surgery and the doctor plans to have him do chemo for 6 months after his surgery to make sure the cancer is all gone. I have recently been reading articles that say to avoid processed and red meats to fight and prevent cancer. I notice that my brother eats alot of pepperoni on pizza and it is considered a processed meat. I want to say something to him about it but it is one of his favorite things to eat so I decided to not say anything at this point. Do you think I should?

and what I think may not work for you or your brother, so take is a one of many ideas that may come your way.

Anyway, I think that maybe I would just mention, during a conversation, that you have read quite a bit about staying healthy during treatment, and see if he is interested. It is such a stressful time, and I know you understand that, so he might not be ready to give up his favourite foods. 

Let him know there are some good books out there ot help, (a few that I have are 'Food to Fight Cancer' and 'Cooking with Foods that Fight Cancer') too. 

It sounds like you have a great relationship with your brother, which is absolutely wonderful for him as he goes through treatment. 

Right now I am reading a book called 'Radical Remission'. It is indeed radical, but very enlightening. 

Blessings!

Hi Jen,

I am sorry to hear about your brother and I am also sad that he has to endure such pain. I am the caregiver to my brother as well and I know just how draining this can be. Of late I find that I have difficulty sleeping and eat meals on time. I have a 17 month daughter who also has been caught up in this. My folks are old and handling something this trying can be alot on their shoulders.

I continue to stay strong by reading in fo from this website and it encourages me to know that there are so many people out there who are fighting and have fought and they indeed have been successful. Success is not what the end result might be but rather how well you handle the situation. I take my hat off for you as this is more painful for the caregiver than for the patient themself.

I remain in my bible daily in order for me not to lose sight of what God will do and it is from this powerful book that my brother remains empowred to press on even in his darkest and painful times. My brother has stage4 colon cancer with mets to the liver, spleen and omentum. His oncologist has given him 8 months to live from November last year. He wasnt able to start treatment then due to med insurrance politics but Thanks to the Lord he has been able to receive treatment from Tuesday.

Remember if you remain confident and you can show your brother you believe in his strength, you can pull him through this. It is okay to cry in the quiet of your room because we all are human and we need to let off some anger, bitterness andpain in this situation. Things will get better and whatever happens God will give you strength to go through it.

My prayers always with you

Katz 

JenCo said:

Hi Trubit

My brother is not connected on here yet but I let him read my discussions here. He is glad I am in this network and your post saying that you were one of the few people who experienced pain from radiation has made him feel better. He was told by someone else who fought colon cancer that he had not experienced any pain. That sort of worried my brother even though he discussed it with his radiation doctor. His doctor said that some patients experience pain while others do not. My brother (Aaron) has a question that he wanted me to ask you. He is wondering if you had any problems with constipation pain. He is supposed to take fiber supplements and milk of magnesia daily but if he takes it daily he has to use the restroom too often. So, then he will stop taking it for awhile and then he gets constipation again. I suggested maybe he could take half of what he is supposed to take daily or maybe only take it every other day. Not sure if you had these issues but he wanted me to ask you if you did.

Is he still doing radiatoin? 

I didn't suffer any constipation during radiation, but I did during chemo (Oxaliplatin, Lucovorin 5FU).  I had awful diarrhea during radiation. No control whatsoever at times. 

I did not take any medication when I had constipation. I tried to walk around a bit, and make sure I ate some fibre. I would definitely have Aaron talk to one of his Oncology nurses, as each case is different and specific to the individual. 

I am glad that you are here, and that both you and Aaron can get the support and comfort that everyone here has to offer. 

Blessings!

JenCo said:

Thanks danker!

I will let him know about the RADIAL GEL....what exactly is bun burn and where is located? I think he may be having 'bun burn' because he has been complaning of being uncomfortable around his anus. He uses a extra moisturizing cream for the discomfort. I'm not sure how well that works though. Congratulations on your recovery! I am so very happy for you and your loved ones.

I think Danker might have meant BUM burn. Ah, how well I remember that burning feeling (and it wasn't love). 

I tried all sorts of stuff on my burn, even adding a little lidocain gel to some lotions to numb the pain. The best that worked for me were Bert's Bees Vitamin E oil (the baby one is exactly the same) and Aubrey Organics Pure Aloe Vera. The last one is liquid (which is why its pure), so its runny, but you keep it in the fridge and when it goes on, oh wow, cold and so, so good. I also used Polysporin, because the hemeroids were getting a real beating. 

Aquafore is good too, but messy. I had to wear Depends during radiation, so messy didn't matter.

The burning does go on after radiation too, so thats normal. The skin between my legs went black. Nobody told me about that. 

JenCo said:

HI again Uncle Buddy!

Thanks for the advice. Especially about making sure to take care of my household and spend quality time with those who are in my household. I have noticed that my husband may be feeling neglected at bit. He is a pretty understanding man but I think he is feeling that I need to spend more time with hime and pay more attention to his needs. I am trying my best to balance all of my relationships. However, it can be very challenging. My daughter is grown but she still lives at home with me. She is 22 yrs old so she is pretty understanding. I notice that she seems to be trying her best to stay patient and supportive of me. I think she understands that I need to be there for my brother. I plan to try to focus more on my husband and daughter though because I know they need me too. I am doing my best to take care of my needs and not neglect myself either. My brother had a bad day last friday while he was staying with me. He lives with my parents but he spends alot of time with me. We have a close relationship and I feel he confides, trust and depends on me alot. I had to take him to the ER because he was having pain in his chest and he was having alot of anxiety because of it. He though something was wrong with his heart or lung. They had to calm him down in the exam room and then tested him for heart, lung or blood clot problems. However he was fine. They concluded that he must have pulled or strained a muscle in his chest area when straining to have a bowel movement. He is having trouble with keeping his bowel movements normal....his movements og back and forth between diarreah to constipation. It is very frustrating and uncomfortable for him. We were glad to know nothing more was wrong with him other than a strained or pulled muscle. He seems to be doing ok since then. He spent this last weekend and today at home with my parents. I will probably be spending time with him more this week. He  is usually with me alot during the week while my parents are at work and when his daughter is in school. I work mainly nights so I can attend to him during the day hours mon-friday. He spends the night with me sometimes too during the week.

I know meditation is not for everyone, I thought it was not for me, until I couldn't control my thoughts when I went to bed. I purchaced a CD, that I played while I went to sleep, and before I knew it, I was hooked. It bought such peace that I can't even put it into words. It allowed me my fears, but in a controlled way. 

I now meditate daily. Not for long, but enough to feel that wonderful calm that I experienced during those awful nights when I first startedd treatment. 

Its an idea.