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Joined: Mar 2006
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Joined: Mar 2006
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Make sure he takes plenty of water or other liquid through his PEG tube if he can't swallow much. My husband has passed out twice from being de-hydrated. They just can't drink enough to keep well hydrated through all of this. So get that liquid in through the tube---it's really important.


Caregiver to husband David, non smoker. Dx 1/06 SCC Base of Tongue Stage IV, neck nodes involved. Surgery/Chemo/Rad. Treatment finished 5/06. Waiting. Recurrence in lung, Aug07. 6 months Cisplatin/Erbitux. Spots shrinking after 3 Cisplatin tx.
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Lisa,
I moved your post so you have your own thread.

Joined: Jan 2006
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Joined: Jan 2006
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I too have children and did feel like I was neglecting them some, with all that needed to be done with taking care of my husband. I did find that in the evening at bed time,I would take a half an hour and spend it specifically with them. They each got me for a full half hour, I would crawl in thier bed with them and we would talk, read, pray or even cry together. When I finished with one, I moved to the others room. This time became my favorite time of the day, because my daughter would tell me what was happening with her social life, school, and whatever was on her mind and my son would share his feelings and give me updates on what was going on at school. Now I cant imagine that you have three hours to spare a half an hour with each child, but if you make a routine stop time for each of them, I promise they will feel special during these circumstances. As for homeschooling, I dont know where you live or if there is a homeschool co-op in your area, but it may be beneficial to try and get a little help during this time. I used to homeschool and loved that I could use my gifts to teach my child to read, but had such difficuly with teaching math, and finding the homeschool network which had a person gifted in the Mathmatics section was a huge blessing. It may just take some of the pressure off you right now. I hope that you will remember to take a little time for yourself too. USE YOUR RESOURCES!! Friends, relatives, church family whatever is available to you. Let the kids have a play date three days in a row-dont feel guilty. Our hope is that this journey will be temporary and short and that your life will return to "normal" the new normal that you will find after all of this.
Jennie


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
Joined: Apr 2005
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Dear Mom to Many, You have gotten really good information above and some excellent advice. I canadd that since John is on Erbitux also, we are very familiar with the Erbitux rash and he is using the Head and Shoulders regular shampoo as a body wash [per Doc's orders] From a caregiver's point of view, I have this to say to you. You cant do it all. For some time during the forseeable future, you will need to either get help with your kids, or help for your husband. It is not humanly possible for you to care for everyone in your large family alone. And if you try, someone is really going to suffer - most likely you!
Considering your situation, it doesn't sound like you can afford to be sick- so please get a support system in place and start using it. Stay with us here, altho Heaven knows when you will find the time. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Joined: Jul 2006
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thank you for all your advice. I come on here once inawhile but sometimes leave in tears...it is too difficult to see those with cancer returning, or how hard it is for some of you. I sit in front of the computer some mornings (usually around 5 a.m when I can be alone) with tears pouring down my face.
David has 2 more chemos (Cisplatin with Erbitux) and will be done with that on September 20th. He has 17 more radiation treatments. We started him back on the feeding tube yesterday as he has lost too much weight and I was getting tired of trying to force him to eat. We have a babysitter set up every Wednesday so I can be with David for his long day of chemo and radiation. Yesterday we were gone from 8 in the morning until 4 in the afternoon. For 3 hours, while he has the chemo, I write. and write. and write. You see, I am a writer. I have had over 125 articles published in magazines and one book about homeschooling published. I have also been in a Chicken Soup book (for mothers) I don't know if this is a crazy time or a good time to be writing about cancer from a caregiver's viewpoint but it is flowing so I am going with it.
David's throat is starting to hurt pretty bad so he is taking Lortab again. His rash is mostly just annoying, not too painful or itchy. He is so constipated it is not funny, and that bothers him most of all right now. He is taking 3 Senokot 3 times a day, with no luck right now. He doesn't get real nauseated from chemo, just a real FULL feeling and no appetite, thus the feeding tube feedings.
I feel fragile, emotionally, on the verge of tears half the time. I'm not sure there is much of a support system for me, beyond the once a week babysitting from siblings and my grown daughter. I know I am taking on too much but have let some things slide, like regular meals (ha!) and laundry. I am not good at asking for help from anyone. My two sisters that I could ask for help are both gone on vacation. I feel abandoned. shocked )

Joined: Apr 2005
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Dear MTM, Hope you can ask your sisters for help as soon as they get back. You really are going to need some. Have David try some prune juice thru the tube, John also uses Benefiber powder[OTC at Walmart] It helps him alot to stay fairly regular.Peg tube food just doesn't have enough fiber in it, and pain meds. tend to constipate too. Glad you have an outlet for your emotions in your writing. This will probably get tougher for the foreseeable future and you are gonna have to be really strong. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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