I made it to Vermont, where I will care for my sister Barbara for the next few weeks while she finishes 6 weeks of cysplatin chemo and radiation. The biggest worry I had was seeing her and her body and all the mutilations and disfigurments caused by her surgeries. Its done. We had some tears and held each other like little children. Her spirit is enormous, then I wonder if she is just not able to let go and be sick and let others care for her. She doesn't want to slow down, doesn't want to let us help her as much as she really needs us to help her. My biggest concern at this moment is the scaring on her arm, where they took the tissue to replace the tongue. It is the worst looking scaring I have ever seen. Also she leaves it open, unbandaged, and It seems so delicate, I worry that she will injure her arm, not having it wrapped or something ? She also is dealing with the Thrush right now, and didnt want to take anymore medicine for it. But we convinced her to, and also have some manuka honey coming from a friend in New Zealand to help combat mouth problems during the radiation. Her throat is becoming sore also. Yet no sores in the mouth. I'm not sure what to do to just simply comfort her. She likes to be touched and held. Yet she hurts all over. I sit next to her and rub her arm, and almost cuddle her ... for the first time in a long time, I feel like we are little girls now, sisters, not grown women 46 and 51. I so want her to get through this and be ok. Anyway ... I'm here and will be keeping you all posted as to how we are doing ... my introduction to the cancer center in Dartmouth, NH will be tomorrow. I'm praying a lot that it won't get much tougher for her. My heart tells me it most likely will get tougher, but I'm determined to keep her spirit strong...

Betty

Betty, your willingness to be there for your sister is sure to help and be of great comfort! Yes she should stay on top of the thrush, besides contributing to pain and sores, it can develop into more serious problems. Yes you should let her do what ever she is willing and able to do. Physical activity helps the mind and the body to heal (my opinion at least). Yes it probably will get somewhat worse for her but she will get through. Lastly, the appearance from the outside might be unsettling until you realize the beauty and positive changes on the inside that can happen.

Take care

Betty you are an angel to take care of your sis like this. Praying for comfort, encouragement, strength, peace and joy for both of you. Keep up the good work...

Betty
Do what you feel is right.. I find that I need more comfort than I would ever of thought... But remember this take some time for yourself.. just a few minutes off somewhere for a coffee will do.. It is so important that the care giver takes special care of themselves too.
Sunshine.. love and hugs
Helen

Hi Betty,

I'm glad you made it to Vermont to be here for your sister. I'm sure she feels very comforted by your being there. If she's up to doing things for herself, let her. The road during radiation will most probably get rougher and the things she's doing now she may not want to do, say, 2 weeks from now. As for myself, when I'm nervous, scared, upset, etc., I always found cleaning the house a stress reliever so maybe her keeping busy is doing the same for her - relieving stress. Needless to say, while going thru treatments I cleaned the house a lot as much as my energy level would let me! I have a lot of scaring on my neck (both sides) and the muscle they took for my flap came from my stomach instead of my arm so it's not so visible but sure is ugly. But, hey, I don't care. I should hope that people love me for me - not for my physical appearance so don't let that get you or your sister down. Hang in there and keep us posted on how you're both doing. And as Helen said, take some time for yourself. You not only need it, but deserve it.

Hugs, Nancy

Betty,

Now you have me looking at my arm, and you know what? It is hardly noticeable. My scar looked pretty bad for some time before it started to fade. They will not entirely disappear, but over time they will improve a great deal. Let her do as much for herself as she can, without overdoing. You can only be there for a short time and her being able to care for herself is a step toward normalcy and key to recovery.

Glenn

Betty,

I'm glad to hear you're there with your sister -- your presence can be a real comfort to her.

I agree with some of the others about letting her do what she's able to do for now. When I was going through radiation, I tried to keep up with some of the routine, everyday things to help take my mind off of the time I was spending in treatment.

Please see that she stays with the thrush medication -- I had some episodes with that that popped up almost overnight and needed to be dealt with aggressively.

You're right to expect that it will probably get tougher for her over the next couple of weeks, so it's good that you're there to help anticipate some of her needs.

Please stay in touch.

Cathy

Betty,

You sister is so fortunate to have you by her side right now, comforting her, hugging her! You are truly a special person for taking on this so important role right now. I know it must be quite a shock to see her like this as it is just as rough for her to be going through all she is right now. Your presence will do great things...for both of you.

You might want to take the time now before it gets a little rougher and sort of negotiate what your sister needs and wants right now. Let her determine (and communicate) what she wants to do and what she would like help with. Sometimes as things get a little rougher, tempers flare and in the case of my mother, we were all doting over her and she resented it because she thought we saw her as helpless. As a caregiver we always want to do so much but I have found it is so much easier to give than to receive. In my case, I reached out to some of my close friends at church and asked them to help me with my lawn. You can ask my wife, this is forbidden territory, usually. Four friends showed up every Saturday and cut my grass, trimmed, edged, etc., and I was so grateful.

I know this is so difficult right now and will perhaps get a little rougher. In time, though, things will get much better. I am praying for a quick recovery and continued healing.

Ed

Hello All ...
YOur words and thoughts are a great comfort to me tonight. Yes, you are all right. I am learning quickly to wait for her to ask me what she wants. Today it was simple things that I did, without her knowing, like keeping bottles of water in the fridge for her and having them ready and waiting when we left for treatment and errands she had to run. Also, I prepared her protien drink. Also when we were sitting at the hospital after radiation and waiting to speak to the radiologist, I just rubbed the back of her neck and upper shoulders, she moaned with relief. She said "thank you so much honey." But, when I tried to help her tie her shoes, or help her with her dressing she quickly reminded me "I am not an invalid," so I moved on and let her be. I understand her needing to feel normality. We talked today about 5 years ago when I myself had unexpected lung surgery and I honestly could not move or do anything for myself for many many weeks, yet what she has gone so seems so much worse and she is UP and AT EM !! We were able to figure out that I could barely breath, therefore it held me back. But when I look at what she has been though, just the initial 15 hours of surgery, I am still in awe that she is doing anything at all !! We had good and bad today with the treatment. She is getting very hoarse, and almost cannot speak, which was her saving grace that she could speak, even though it is impeeded by the new tongue. She insists she is just talking too much, and the radiologist made her see that the effects of the radiation are starting. She did let me take her phone calls tonight and tell everyone what she wanted to say and her and I are starting to whisper only to each other and I am talking for her. She let me. Didn't complain. Also, she is eating so well on her own. Took someones advice on the forum and told her to use the chop stix and move the food back and forth. She is just doing it with her finger, and I am going to look for a good pair of chop stix for her. Tonight she had to have KFC, and mashed potatoes and cole slaw. She did wonderful. She is drinking so well also. Has lost about 22 lbs., but she is about 70 lbs. overweight, and the doctors are keeping a close eye on her nutrition. Tomorrow is chemo also with the radiation so it will be a full day at the hospital. Today, she pulled her hair up in a bun and I really got a good look at the neck scaring. Yes, it is a hard scar to look at, and her arm really bothers me, not so much because of the appearance, but because it looks painful. She assures me, she is ok. We went shopping after treatment, her request, and tonight she just wanted to take me riding around the beautiful countryside of Woodstock. She turned her music up loud and just directed me to drive. Then we sat and fed the trout in her pond out in front of her property. It was a good day for her, for us as sisters. Thank you all so much for your words of kindness and support. I also have all of you in my prayers ...

Lots of tender hugs.
Betty

Betty,

What a wonderful and touching story! I know how tough this must be for you, too, and how much you love your sister. It is so difficult to see someone we love so much go through such a rough time. I think Love is the greatest gift God gives us, even though it can sometimes be the most painful.

I am glad you are there with your sister and may God touch you every day in special ways as a reward for what you are doing. It looks like He did yesterday, for sure.

God Bless,

Ed

For all my dear new friends ...
What a day !! But a day that will go in my journal, and definately a day that brought a special bond with my sister. We have all lived in different parts of the country since adults, so although always in touch, not close physically for the things I have with my own family (husband and children.) Today, the emotional and physical caring that she accepted from me was a pleasure and a treasure for my memory.

Today was radiation and her 2nd of 3 rounds of chemo. It was an all day event. We had some challenges with her "port" ... burning sensation both treatments of chemo, this time worse, so they were worried about leakage, and when it was done and they took everything out, she bled profusely. So they rushed us to xray but found that there was no leakage.

The nurses were very short staffed today so things weren't as organized as had been for her last chemo. So, without asking I stepped into the nurses station found out where the warmed blankets were, and brought them to her and kept her covered and kept getting the blankets rewarmed. She loved that. "THank you, Thank you, Thank you so much." Then I kept refilling her water, keeping her protein drink filled, and telling the nurses what she needed. I stepped out every couple of hours at her insistence and roamed and walked and read and each time I returned to the Infusion Suite, she was thrilled to see me. When all was said and done, we went to the surgeons office for her check up appt. He debrided some of her arm scaring (which both of us had to close our eyes to ...), the doctor told her she looked good and to our (the doctor and my) surprise she looked at him and said "You look good too !" He laughed and said "I can see your mood is lifted, and I can't tell you how important it is that you have your family with you." By the end of the day she didn't mind or resist any of my help and my questions to the doctors and nurses. She even let me put her shoes on her and help with her dressing !!

She wanted to get her favorite fajata's at Chili's Restaurant, and work on swallowing, so we stopped on the 40 minute ride home ... we sat in the restaurant (I was so worried she would get sick, but I didn't say anything) ... she wanted to be there and she wanted to eat. She insisted on sitting on the same side of the booth with me, and put her head on my shoulder and said to me "I'm just so happy you are here, my day was so much better wtih you here." This just meant the world to me.

She laughed on the way home, and again, she made me drive, and put the music on loud.

I don't take this as a down note, but she did put in a Tom Petty CD on the way home and quietly told me "when I die, I want this song (Room at the Top) to be played at my funeral." When I listened to the words I started to choke up, she was going to turn it off, and I told her "let me listen." Then she went into further detail about the funeral she would want. I just listened. Then I told her the same about me, what I would want ... It was strange but at the same time, she needed to talk to me about this.

What a day ... she was so happy, so at ease and so okay by the time we got home.

Wasn't sick when we left chemo ... so I will wait to see what happens tonight.

It was a hard day, and at the same time ... a very special and peaceful day for us.

My love to you all.
I hope your days were also blessed and at peace.
Betty

Betty,

Another blessing for your reward! I remember when my mother was terminally ill and we spoke of her funeral service. She didn't want much but I made sure and wrote it down and it was as if it was choreographed by her. We couldn't find one song by Rod Stewart (Rythm of My Heart)in time but we managed to get a floating urn and take her ashes to the Pacific Ocean and let her go by a lighthouse to find her way back home (Japan) as she requested. Here are the most favorite words to the song that we sang as she floated away:

"Oh rhythm of my heart is beating like a drum
with the words "I love you" rolling off my tongue
No never will I roam for I know my place is home
where the ocean meets the sky I'll be sailing"

I always remind people through these times to do everything possible to MAKE THE MEMORIES! Every day is really a gift and if we go out of our way to make memories, we can cherish those for as long as we are in this world. Sort of a gift that keeps on giving.

I am really happy for both of you!

Ed

Oh my gosh, I am sitting here crying at the touching posts from Betty and Ed....Betty, I am sooo glad you had a good day with your sis, and Ed that is my fav Rod Stewart song...thanks for sharing your memories......Love, Carol

My dear friends ...
I'm so touched, so moved, so grateful that I have found this forum. You are all so dear and near to my heart this day ...

Radiation went quickly this morning. Barbara is a bit moodier today and very tired. She went home and went right to bed. No sickness yet from the chemo yesterday.

I have moved from the cabin on her property to the Woodstock Inn for the weekend, this is my treat to myself ... her husband has family coming in for the weekend, so I decided since we have no treatments on the weekend I could get out and stroll the beautiful town streets and shops and get some new scenery. It's only 5 miles from Barbara's farm, but she didn't want me to leave ...

I told her we can sit out on the street together and enjoy the scenery, then she was happy. She's ordering us both a massage at the spa too !!

My love to you all.
Betty

Betty,
Thank you for telling us about your good times as well as bad. As Ed says, we need to build memories.
I have to fight against crying, because crying seems to constrict my throat and really hurt - laughing does not hurt, though!
I am glad your sister is feeling well enough to want to do fun things. She will probably be very tired pretty soon, so plan to do what you can while she feels up to it.
Leena