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After Treatment- Horrid

Laura Lynn
Posts: 10
Joined: Feb 2012

Hello my mom has finished her treatment, intact somewhat, she spent the last 2 weeks of her treatment in the hospital, she is 68, PEG tube equipped and uses regularly. Last Rad was 3.12.12 and last Chemo was 2.22.12- today 5.27.12- she feels horrible, mucus party every day. No appetite, no desire for food at all. Her throat hurts all the time where the tumor was, in the back right of her throat. Was eating some peaches and fruit popsicles but, still no desire really... Will any of this get any better. She is so tired of feeling bad, wont get out of the house, wont get dressed. Has lost alot of her hair. I am sorry I am just complain, complain, complain..... It just seems this road is taking us nowhere good.

You know when they sit you down BEFORE treatment begins... they never tell you that you'll never be the same after treatment... they never say this treatment will just about kill you depending on your age...they never say that your mouth might not be useful later on... Sorry I just feel so bad for my mother, this treatment has really made her second guess ever taking it.

Laura

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

it may seem this way to her now, but it won't later on. 68 is not old for this treatment. And although everyone has a different rate of recovery, hers is actually within normal limits. I wish I had a dollar forneveryone who was ready to tive up 2 months after treatment, only to come back a few months later feeling much much better. I finished treatment Feb 23, and just got off pain pills two weeks ago. many people need them longer than this. I have just started eating solid food, but cant get by without ensure as I can only eat about half enough to get by. Nothing unusual about this. I dont know how long it will take to get back to 100 percent again, but it will happen. The mucusnwill stop eventually.

Your mom is also depressed. Nothing unusual about that considering what she has been through. She needs treated for this right away, as it has a lot to do with her recovery. Others will come along with concrete suggestions to share with you and her. I want you and her to know that more time will fix this stuff. Think in longer terms.

Pat

Ladylacy
Posts: 515
Joined: Apr 2012

It does get better. My husband underwent his first round of 35 radiation and 2 chemo treatments in 2010 at the age of 73. He was on a feeding tube from August 2010 until May 2011. He had a laryngectomy and throat reconstruction in late March 2011. He is able to eat but it is a slow process. Right now he is undergoing a second round of radiation and chemo due to the fact that when the surgeon/ENT was going to do a procedure to help him speak better, he discovered a small tumor at the cervical of his esophagus and it is cancer -- a 2nd primary. He has another feeding tube and is now using it because swallowing has become hard once again. As far as the mucus he still has it but it is not nearly as bad as it once was.

Yes he got depressed and is once again. But as long as he stays busy he seems to do okay. As a caregiver it is hard, and easy to get upset and discouraged. Been there, done that, got over it, and once again in the same spot.
Sharon

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

get your mom to read this thread. Here is a nice fellow who was ready to give up six months ago. She will get there too. You just cant see the improvements day by day, but month by month life gets better.

http://csn.cancer.org/node/238675

Laura Lynn
Posts: 10
Joined: Feb 2012

Thank you Pat! I just spoke with my Mom and encouraged her because of your response. More time is all we need. I pray God will give me patience and her... Thank God she is not on pain meds and no anti depressants. Mom is super sensitive to any drug. So she is basically drug free except blood pressure. We already have been down the drug road...

Thank you so much!

Laura

KTeacher
Posts: 991
Joined: Jan 2011

Rebecca Katz has a wonderful cookbook, The Cancer Fighting Kitchen. She has developed recipes that we can eat, the aroma of the Magic Mineral Broth stimulates the appetite. It takes a village to take care of a cancer patient, I hope that you have some help also. Maybe you could call in friends to help with some of the recipes (you can go on her website and get a few).

I agree with Longtime, it sounds like depression has also reared it's ugly head. Check with MD about getting a prescription. Laughter is good medicine, get some movies that you know are funny, might be a little time of relief. I remember the week after my surgery (1 inch of my lip was removed, 50 stitches) I was with my sister and her family, everything we talked about was funny, I had to leave the room my surgery site was hurting so much from the laughing.

68 is not old, I plan on being around in 10 years (I will be 68 then) and longer, I have grandchildren to see grow up!

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Like Pat and others mentioned....

Your mom is actually right on schedule and pretty much as a lot are given her time frames you mentioned.

More than likely (not sure), but the MD's did give you literature on recovery and life after treatment, mine did. But at the time, who really reads or listens (hears) any of that. Your concern is surviving first...

Once you realize you are going to make it, then you start reading that stuff, or at miminum start questioning how you feel and what's the future going to hold... Originally you were just concerned if you would have a future.

As for being the same...

I'm not so sure if I'm buying in to the new normal, at least for myself. I was at first, but now either my "new normal", is normal, or my old normal is still my normal, just with a few bumps and scrapes, and a touch of character, LOL...

I hear that "you're quite a character", quite often....hmmmm.

Best,
John

Laura Lynn
Posts: 10
Joined: Feb 2012

Thanks to you for your kind words. I am really cheering mom on. She really has a hard time at times, like this a.m. she tells me (she is totally on feeding tube) she has diarhea and vomiting. I just wish she could get through a week without throwing up- Who enjoys that? She vomits cause of all the mucus, that is why I asked that question about the mucus. Well we will keep hanging in there... I really look to a day where my Mom and I can get out and do something together again and eat a meal together. You dont realize how much you miss the small things in life.

Laura

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Just a quick shout out since you brought it up....

With her having some issues you mentioned, make sure to keep her very well hydrated to make up for those fluids being lost.

Being under hydrated will make you feel like crap big time.

Hoping you have some time to both relax a little over the holida week-end.

Best,
John

Laura Lynn
Posts: 10
Joined: Feb 2012

Thanks to you for your kind words. I am really cheering mom on. She really has a hard time at times, like this a.m. she tells me (she is totally on feeding tube) she has diarhea and vomiting. I just wish she could get through a week without throwing up- Who enjoys that? She vomits cause of all the mucus, that is why I asked that question about the mucus. Well we will keep hanging in there... I really look to a day where my Mom and I can get out and do something together again and eat a meal together. You dont realize how much you miss the small things in life.

Laura

Laura Lynn
Posts: 10
Joined: Feb 2012

Thanks to you for your kind words. I am really cheering mom on. She really has a hard time at times, like this a.m. she tells me (she is totally on feeding tube) she has diarhea and vomiting. I just wish she could get through a week without throwing up- Who enjoys that? She vomits cause of all the mucus, that is why I asked that question about the mucus. Well we will keep hanging in there... I really look to a day where my Mom and I can get out and do something together again and eat a meal together. You dont realize how much you miss the small things in life.

Laura

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Laura, tell mom to hang in there. She is probably at the worst time in the treatment...just needs to hang on for a few more weeks. It DOES get better and you will be able to go out to eat together again. One thing this treatments forces you to learn is to be patient. A year ago I had all these great people telling me to hang in there and I would have never thought that I would get thru it, but I did and your mom will too. I was 55 when I went thru the radiation and it sounds like mom is in pretty good health otherwise. Heed what everyone else has said and talk to docs about depression. Depression can definitely hinder the healing process. She may need anti-depressants short term just to get over this last hump in her road to recovery. She is lucky to have such a great caregiver.

CivilMatt's picture
CivilMatt
Posts: 3085
Joined: May 2012

Laura,

I am sorry your Mom doesn’t feel well, like everyone says it does get better. It is great you are such an advocate for your Mom, for me it is my wife. I never had the energy to search the CSN website but she always did and I am grateful for all the information she found.

I am 9 weeks post radiation and the mucus is still a bear to deal with, I feel like I can never clear my throat completely. As for the throat pain, I used the “Magic Mouth wash” and swallowed it a little at a time (what a relief). I now rarely use it. I imagine going through this with no pain medication would make the journey more of a challenge, but she can do and you can help. As mentioned by others your Mom should drink lots of fluids, sometimes warm tea helps my throat.

At 2 weeks (post) I could not eat popsicles or fruit (I tried). I did get rid of my PEG tube as quickly as I could, but still find it very difficult to eat, so I have to drink lots of smoothies.

As for the doctors, don’t get me wrong, mine is great, but they snapped a picture of me for the file right after telling us (wife & me) about the cancer treatment. I was a mess and looked it too. I do not regret taking treatment, but hope to enjoy more years ahead then I would have without treatment.

Matt

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Sorry to hear your Mom is having so much difficulty with the post-tx. 68 is getting up there in the years. By this time most of us have noticed things getting significantly better, if they're truthful with themselves. Does take time, and her age might be working against her.

It is what it is, Laura. My Onco told me on my first visit that I'd be on Morphine with the regiment they had planned for me, and had to get a PEG and Port before any chemo and rads could be done. That kinda registered with me, and why I took a "Come what may," attitude. It's not an exact science, Laura, and some damage cannot be avoided. It's up to us to learn to accept the "new normal" that this 2nd chance at life carries with it, and deal with it as it comes at us with a Positive mindset. Hope it turns around for her soon.

kcass

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Can't really add to what's been said already. I am just now 4 months post treatment and I can feel your moms frustration. 3 full months after my last rad I had mucous (and I mean thick as super glue) pain and slept for a full month after rads. And I'm 48 years old. I don't consider 68 old, but she does have 20 years on me and if she is not taking pain meds...that easily makes her my hero!! :) :)

Tell mom her cyber cancer buddies are pulling for her and that there is light at the end of the tunnel....I remember my mucous one day just went almost completely away ?? Strange, but it did. Ever since then, things have greatly improved.

Be sure and visit www.oralcancerfoundation.org for some great info.

Keep us posted Laura...

Tim

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Like others already said, she sounds normal for just a few months out of treatment. Being she is 68 she might heal just little slower, but she will heal and all this will be in the past. For now just stay with her and keep encouraging her every day, help her to stay positive on the little things that start to come back day by day, soon she will be back to her New Normal.

God bless and keep you both and God bless you for loving your Mother and being a caregiver to her.

Hondo

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I'm 8 years post treatment and had to get a PEG put back in for a different reason. I just want to comment on the vomiting problem. If she is on a formula, make sure she is sitting up when she "eats" it. Also, I have found that if I ingest it too fast, a little will come back up in my throat. If she is using the bolus method with a syringe and just pouring it in, try the gravity method with a feeding bag. That way you can control the speed in which she is receiving the formula better. I turn down the drip quite a bit. It usually takes me an hour to an hour and a half to have a meal. One other thing she doesn't want to do after consuming her meal is to bend over. Good luck and keep telling her it WILL get better.

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