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Mother struggling to deal with a life without food

DarrenMoo
Posts: 4
Joined: Nov 2013

My mother had a peg put in a couple of months ago and is really struggling with the prospect of a life without solid food,  I am writing on her behalf because she is only getting used to computers,  she is really looking for the perspective of people who are going through the same thing as opposed to medical people who have not, she always loved her food and her cancer has nearly taken a back seat such as the profound affect this has had, any advice or tips would be greatly appreciated,  her name is Anna and she is truly an amazing person.

KTeacher
Posts: 781
Joined: Jan 2011

Thank you for being proactive for your mom.  I never had a peg but many others did, and some will have them for the rest of their lives.  First, did you read the Superthread at the top of the topics--there is information about peg.  Many others will chime in about their experiences.  What type of cancer did your mom have and what is her age (if you don't mind sharing).

DarrenMoo
Posts: 4
Joined: Nov 2013

Hi KTeacher

 

she actually got two different types of lung cancer, in February 2004 in her left lung and then January 2012 in her right lung, she had major surgery on both occasions, 5 months ago she developed aspiration pneumonia which developed in to pseudomonas, a decision was made then to bypass her failing esophaus and insert the peg which happened very quickly, it was a huge change in her life in which she had no time to prepare for and has still not come to terms with, the attitude of the doctors was, we saved your life and this is a small price to pay, but the thing it is not a small price to her, she has been so brave through all the treatment and painful surgerys  she would sacrifice everything to survive to see her grandchildren grow she has show me strength I did not believe possible, but a life without food was just a bridge to far for her, and she needs to discuss it with people who truly understand, reading through these posts have already helped so much and thanks you so much to everyone who has taken the time to respond (oh I forgot to mention KTeacher) she is 65.

Hondo's picture
Hondo
Posts: 5446
Joined: Apr 2009

 I am doing life with no parole

 

The hard part is telling your body things are different and getting use to not eating. I still smell how good food is and sometimes my body remembers the taste of the foods I once loved. My wife makes all my food as I am a vegetarian and then she will blend it up to a liquid so it can go into my PEG. I still get some taste from it but nothing like before, it take getting use to.

 

Welcome to CSN both you and your Mom

Hondo

hwt's picture
hwt
Posts: 1655
Joined: Jun 2012

Please tell your Mom that I am very sorry that you had the need to find this forum on her behalf but glad you found us. I was on a feeding tube when I went through my initial tx. but was able to return to eating. Someone on this forum once said they used to live to eat and now they eat to live. Even though most of us have been able to return to eating, food just doesn't play the same role in our lives as it did before cancer. When I had a recurrance and was looking into available treatments, I was told by one doctor that I could be on a permanent feeding tube. I think back to my feelings and can understand your Mom's concerns. So much socializing seems to revolve around food. Yes, it will certainly be different but with support of others from this site, like Hondo, she will see that she can do it.

God bless,

Candi 

CivilMatt's picture
CivilMatt
Posts: 2649
Joined: May 2012

DarrenMoo,

I was on a PEG for a short while, but it does take some getting used to.  Many of us struggle with the new normal (changes) caused by having had cancer.  I hope your Mom finds a way to make the adjustments and be happy.  So far the price I paid for getting rid of cancer seems ok. 

Good luck,

Matt

nick770's picture
nick770
Posts: 186
Joined: May 2012

I hope that your Mom can regain her ability to eat food again, Everyone is different. my .02 would be to have her practice swallowing excercises and mouth opening excericses. See if you can get her to a speech therapist some time thay wil provide her with some excercises. 

jackflash22's picture
jackflash22
Posts: 175
Joined: Aug 2013

Does your mum have a motorised Peg feeder or syringe. I find my motorised feeder a blessing at the moment. I,ve just finished 6 weeks of radiation and can't swallow more than sips of water. while the machine is keeping the food going in at a slow rate I can sit and relax...knitting(2 wooly hats so far) TV.....reading. I find a sunny room in the house and set my ,stuff, up for hours I want to relax and put my machine on. it has different rates the food goes through so you .can have it on slow or fast as you want. I keep a plate of juicy bits like cucumber, apple, carrot etc just to bite on then discard. I get the feel and some taste from it. I have 1.5 ml bottles of Osmolite which make Ensure. The machine is called FreeGo ...Abbott.  The bottles Hang upside down on the machine. I guess you could use an empty bottle to put home made liquid in. It's so much easier to feed this way ...hands free.There is a backpack you can get so its portable ( fully charged). Hope this helps

lornal's picture
lornal
Posts: 166
Joined: Sep 2013

I'm new to the PEG for life scene.  I'm 51, and had tonsil cancer/treatment in 2007.  But the radiation is just now biting me back.  I had a tube put in at the end of September. I loved it at first - because I was finally not dehydrated.

But, I also love to cook and love to eat.  I still try to cook some for my husband and son, and sometimes take tastes of the sauces.  I also try to make soup when I can. But the smells, and the tastss I"m missing...That's tough.  Right now I can barely get water down - and the doc is going to dilate my throat again the week after next - so hopefully I can get soup down again.

But, I'm alive, I can work, do things with my family, socialize with my friends (to some extent - the raidation scar tissue is doing a number on my vocal cords too), and just do things in general.

Now, I personally can stand to lose a lot of weight - so now I can go on a controlled calorie intake diet - down about 13 so far!

Hopefully your mom can concentrate on what she can do - espicially what she can do now that she is getting nutrition, hydration, and doesn't have worry that any bite of food can send her to the hosptial!

Gool luck to her! - maybe we can work this out together!

Ladylacy
Posts: 413
Joined: Apr 2012

My husband has been on his second PEG tube since May 2012 and will be on it until the end.  His first time he was on a PEG tube for approximately 10 months but after a laryngectomy and reconstruction of his throat he was able to eat again very slowly.  But then when a PET/CT scan showed that he had a second primary at the cervical of his esophagus, he had to have another PEG tube.  After undergoing radiation and chemo again, the doctor said after his first PET/CT scan which was NED, he would remove the PEG tube.  But if January the PET/CT scan showed that the cancer had reoccurred and spread to his lung.  He couldn't swallow pills, liquid, or foods so they didn't remove the PEG tube.  He never was a big eater so I don't think it bothers him not being able to eat.  He never says if he misses food.   He just uses his PEG tube for his feedings.  Yes it is hard to get use to, but without it, he wouldn't be here today. 

There are several on this board who will use a feeding tube for the rest of their lives.  Some use a blender and blend regular food and put that in their feeding tube.  This is something we have never done.  Guess to afraid of stopping up the PEG tube.

Wishing you and your mother the best --- Sharon

 

Hondo's picture
Hondo
Posts: 5446
Joined: Apr 2009

Stopping up the PEG is a fear we all have, I been very lucky and have never got mine plugged to the point I could not unstop it. What we do is to suck everything in to the syringe first because the hold is smaller than the PEG tube, if it goes into the syringe it will go into the PEG with no problem. Sometimes the wife has to makes sure it is very watery and not to thick and at the right temperature but other than that I been doing well on the PEG eating the same food everyone else eats.  

Wishing you all the best

Hondo

jim and i's picture
jim and i
Posts: 1443
Joined: May 2011

So sorry your mother is facing this loss of pleasure. My husband has been on a PEG for two years. He sometimes misses eatting but then he remembers that the food doesn't taste like it used to and the aspiration is scary. I am praying your mother can adjust to her new normal.

Debbie

longtermsurvivor's picture
longtermsurvivor
Posts: 1723
Joined: Mar 2010

Anyway, if that's true, then I'm a liquid.    Heck, when my THIRD cancer appeared two years ago, after scratching around for a form of treatment that had a chance of curing me, I was asked by the radiation oncologist "do you want to hear the list of all the things that can go wrong with this radiation?"  I knew without treatment I would have been dead in a few months, and the trade-off of most of the side-effects seemed to me to be acceptable.  So I declined to even hear the list.  Now, almost two years later, I'm alive, doing very well, but am living with a few of the problems.  One of those is I canot eat solid food.  It just won't go down, even if I could chew it.  I don 't have a PEG tube, never have as a matter of fact.  So my diet consists of Ensure, and stuff I can turn into liquid with a blender.

 

Now, I still do the family cooking, and I still go out to restaurants, but it certainly isn't the same as it was before.  I made a choice to live, and to deal with the problems the treatment gave me two years ago.  So I don't sweat the little details.  My diet is boring, I guess, but to everyone's amazement around me, that doesn't bother me.  Its all in how I look at it.  I can't say I'm often very hungry.  I just count the calories and make sure I get enough.  My best to your Mom. Tell her "carpe diem" from me.

Pat

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