Kathie, welcome to OCF. Your sister has gone thru a rough time and is still struggling. Poor thing, no wonder she isnt her usual self. This is a big hurdle to mentally overcome. Many cancer patients face so many different side and after effects that they need anti-depressants to handle things.

Im glad Charm has responded to your post. He understands what its like. He has handled this much better than I would have been able to. (Maybe it has something to do with the wine (LOL to Charm)) Seriously, Charm has overcome this disability and handled it with grace.

I like the feeding pump, I think it is much easier to sleep during the feedings. Ive used a feeding tube the first time for 1 1/2 yrs and now this time its been 17 months. Im working on eating enough to maintain a healthy weight and balanced nutrition. Every time I am close to being tube free, I find that my health has declined and I cant get off it. I havent eaten a real meal in 3 1/2 yrs. While this doesnt happen to most tube users, it does unfortunately affect a few.

Best wishes to your sister with her upcoming appointments.

Tom,

When my husband first got the peg, a Mic-Key, he was in terrible pain. The next day he was being fitted for his radiation mask. Lucky for us, the dietician at the oncology center noticed that Tim was bent over and in pain. She immediately knew that the tube was too tight; she had seen this many times. We went back to the radiologist that afternoon. He did a CAT scan and was going to send us home with more narcotics when I asked about it being too tight. He claimed that never in his practice had that been a problem, but he put in a longer one, anyways. The difference was immediate. If the pain continues, you may want to ask about a longer one.

Frank

Thank you so much for taking time to reply; I have taken on board all your comments and will now do things the right way round! thanks for putting me right. I will post things as they come up; but thank you once again and very best wishes to you all.

Kathie UK

Thank you so much Christine; Yes she has been through so much so P.G. she will soon turn a corner.

Your words were such a help and will let you know how things go.
Best wishes
Kathie

Kathie, we are all in this together. Glad I was able to help you. Wishing your sister better days ahead.

Hello Charm
Have not been in touch since January but your reply was such a help. I'm afraid I am so bad at understanding how to use the site; my little grey cells are deminishing and modern technology gets me very confused!! but I do try. Your reply was so so helpful; time is passing and my sister Jo was told that the treatment so far has been successful; she has however been back in hospital on a number of occasions due to dehydration; she constantly rinses her mouth 24 hours a day; and spits out as she cannot swallow water or food; dryness at the back of her throat is bad and she feels that the spray does not reach the back of her throat although the drinking and spitting now seems to have become a habit and very obsessional;

I was present when she saw her consultant on Thursday last even during the consultation she was constantly rinsing her mouth out and spitting. She just seem tormented. She carries two cups and a bottle of water with her constantly which is fine but can go through a two litre bottle rinsing and spitting every thirty minutes. She is up during the night doing the same thing. Her dietician did say she was not taking enough fluid through the peg and that she must make sure she does; it is very hard to encourage her to do these things as she insists that she does but I' don't know so much!! she continually shakes and she is so demoralised; she has also gone deaf post treatment; Charm my heart goes out to her and sometimes I feel as though mine is going to break but I know that will not help her to see our sadness. I'm sure it would do her the power of good to visit this site but myself and her husband have suggested this to her and she does not have any motivation. I know you must have been in the place she is in now; what can we do to help. She is on antidepressants and she has now developed shingles. I myself am well aware that it is early days yet and we must wait for her to turn a corner but I think she feels that she should have at least turned a little one by now. I only know that my Jo must feel so very poorly and selfishly I miss her so much.

Charm, if I have gone about writing this note the wrong way please forgive me.

Our love and all the best to you and everyone

Kathie 6571

Kathie

There is nothing to apologize for. How sad to hear of your sister's troubles. I wish I did have an answer on how to help her, and I would share it if I did, but I do not.
I never had to be treated for depression but my understanding is that antidepressants take a while to work. Other posters here on OCF have taken them and maybe they will chime in. As for the mouth issues, She may want to try using seltzer water to rinse her mouth, the fizz worked well for me.
The mucous is annoying and hard to reach.

Keep being there for her. She is working through the grief of losing a lot - I know I would have been very upset if my TX had made me deaf. Again, sorry to hear this
Charm

Hi Kathie,
I produce almost no mucous and suffer from a dry throat also. I use a dry mouth moisturizer that is in a gel form called Oral Balance by Biotene. I don't get through a whole night without waking and swishing some water and then using the gel but I only do it once or twice a night now. Has she tried this gel? I was also given another product that had an aniseed flavour which was a thickened liquid that you gargled and spat out. I don't recall it's name as I used it once and hated it. I also use the Oral Balance during the day and find that it's effective at keeping my mouth moisturised.

I wasn't sure from your post if your sister is swishing to moisturise or to get rid of mucous (or both), so I apologise if I'm off track here. If it's mucous that's the problem the good/bad news is that it may well disappear completely with time. I had thick stringy mucous which used to make me gag for about 2 to 3 months after my 2nd lot of radiotherapy. I now have none.

I am lucky to enough to be able to swallow thickened fluids but I am dependent on my PEG for most of my nutrition and water. I have lost half of my tongue and have impaired speech but I have a good life. I travel, socialise and find ways to do most things. (I went snorkelling in Hawaii 3 weeks ago - it was a little uncomfortable and I needed lots of mouth gel but I'm still proud of that little victory!). I also take an anti-depressant! I would like to stop taking that but now is not the right time for me.

Let your sister know that she is not alone in her problems and that while there are some things that may never be fixed life can be good, even if it's different. I feel so sorry that she seems to have given up. I wish there was something I could do or say to help you and your sister, not to mention the rest of the family. It must be so hard for you all.

Best Wishes
Sue G

Tom,

Welcome to OCF, glad you found us, sorry you had to! Great advice about the PEG from all who've responded to your original post. As you can see, there are a lot of ?'s, issues and social concerns about living with a PEG so your thread has taken a different path...and that's OK because all of this is useful information and obviously should be discussed. I hope you don't feel ignored or imposed upon...but that's what is great about this site and community...we help any and all.

Kathie,

This is a difficult thing to deal with. Your sister needs support, she needs to be uplifted, inspired and shown that there is hope for a great life even with the struggles she is currently faced with. Your sister needs this site. The advice, support and inspiration from the "survivors" and "heroes" on this site is the best "medication" she could ever be prescribed.

Now that being said, I believe that there should be every avenue available for your sister to cope with what's happening to her right now. As Charm said, he has wine through his PEG, I've shot whiskey (not recommended but it's amazing how fast you get drunk when you don't have to deal with the burn!) it wasn't an everyday occasion but sometimes you just need a stiff drink and trust me I earned it

Anymore I'm a huge advocate for medicinal marijuana (never smoked! always vaporized or in food) the benefits of it in our situation are many. Marijuana (MJ) will improve the mood, lower anxiety, ease pain, relieve nausea, increase appetite and encourage sleep...which is a benefit when the opiate pain medications cause insomnia. Alcohol, prescription drugs etc can be dangerous and can take you down a path of dependancy and destruction if not careful...which is why support, advice and guidance is always prudent. Anyway they should be used as tools to get to a place where you can cope with what life has thrown at you on your own.

I don't know where I'd be if I didn't have Charm, David, Christine, Jim and Brian and the many others on this site to help me through the aftermath of treatment and surgery. I was severely disfigured, physically decimated and my speech and ability to eat normally greatly impacted...yet here I am loving life and thriving three years out. This site, these forums, these "warriors" inspire and motivate me daily and they will your sister too.

Tom, Kathie, Kathie's sister...keep your spirits up, read the quote in my signature and find your "why".

Eric

Kathie - Just to add a little something to EricS' comment about finding your "why". It is so important! Nietzhe's quote in his signature is very powerful. I didn't realize how important this "why" was at the time, but when my son was diagnosed and very, very depressed, I was so afraid for the direction he was going in. I tried to tell him how important he was to me, how much his family needed and loved him, what it would do to me to lose him, it didn't seem to matter until I started talking to him about his 5 year old daughter and what it would do to her if he didn't start fighting this cancer beast. We talked about the sadness she felt when he and her mother divorced, how it had affected her and how much I knew that she needed him to survive. And it did make a difference. It doesn't matter who or what the "why" is, - only that it needs to be there to be able to give one a reason to go on and to have hope. I do hope your sister will find her "why" and that there will be better days ahead for everyone.