Hello Everyone,

My mom cant swallow now. She was very stubborn about getting a feeding tube. Now, she has no choice. How does it work and how soon can it be inserted? She has an appt today and I am worried. Are there bad side effects to it? Also, I cried because I was worried when she told me she couldnt swallow that maybe her airway could get blocked. Is that a concern as well? Are there pointers for the feeding tube that I can use for my mom to help and any potential problems and how you have helped that? Thanks again so much!
Love
Stephany

Stephany, there are different types of feeding tubes that work in similar ways. Mine was a direct tube into my stomach through the skin and tissues with a 6-8" tail and I was given a large injector thing for putting food, meds, etc., into the tube. It also had a stopper that could be used to push things through if they got stuck. Try to avoid anything that might get stuck in the tube. Stick to liquids only for the first bit. If you have a problem, Pepsi worked on mine to free up any blockages. Also used baking soda.

Generally, the tube can be inserted by a doctor as soon as you can get a schedule to have one inserted. The worst part about the insertion is when they put the camera feed down your nose and past your voice box into the stomach so they can see what they are doing. The actual insertion is no big thing.

I had no side effects at all. Just have her keep it out of the water when showering for the first 10 days. After that, normal showering is OK. Don't suggest baths or swimming, though, as soaking it can cause problems I've been told.

I don't think the airway is an issue if the throat is not working. Have mom breathe through her nose and it should be OK. Of course, I'm not a doctor, but have not heard of anyone having breathing problems because of a feeding tube.

Try to keep her drinking if at all possible. Some on the site have had issues with swallowing after not using the mouth for a while. I used only the tube for about 4 weeks or so as I couldn't swallow at all due to the rad treatments, not even my own saliva. But I had no long term problems and am swallowing everything these days. In fact, I have regained a fair amount of weight and am now watching what I eat.

Other than the stopping up of the tube, I had no problems with mine. Try not to put anything but liguids through the tube and you should be alright. God bless.

stephany, you asked alot of questions i had. they are supposed to put my feeding tube in tommorrow. im glad they are doing it now while i still feel good. i think once your mom gets some nutrition she may feel better. i wish her and you all the best!! kirk thanks for your informative answers. your friend, tracey

Stephany,
I had my tube inserted during the fourth week of treatments. It took a week to schedule the insertion after the decision to get one.

Because my throat and mouth was already pretty sore because of the treatment, I asked that they use a pediatric catheter (or whatever it is called) to insert the tube because it is narrower and didn't rub against the radiated tissue as much. The procedure to install the tube usually involves three 'staple' like metal things that hold the stomach close to the abdominal wall so that it doesn't move once the tube is installed. This can lead to some pain immediately after the procedure.

I was told to wash around the outside of the tube where it met my abdomen with antibacterial soap and warm water each day to prevent infection.

Although the procedure was a bit of a hassle, having the tube was a big improvement in terms of nourishment. It was so much easier to stay hydrated and nourished.

I had a big plastic injection tube that I used to pour Ensure or Boost into and let gravity drip it into my stomach. Also available was a bag that would hang like an IV bag that dripped more slowly than the tube and could be used while sleeping. I never tried it but it might be helpful to your mom if she is sleepy and wants to get some nourishment while asleep. Best wishes, Sheldon

Kirk, Tracey and SHeldon,

THank you so much for your messages. It was very helpful. What happened today was that my mom was admitted to the ER and a PEG tube was in place by 2 today. I just arrived home from the hospital after being with my mom all day and night. WE got the CT results and it stated that there is a probably recurrance of cancer to the floor of her mouth and neck...something like that...So, it does not look good for her. Her lower lip is so swollen and ulcerated.....I feell so bad for her. She got a PEG tube..So that is just in her stomach right? They are starting feeds tomorrow. She is still in the hospital..Thanks for the pointers regarding the tube.....She is in so much pain that I just am having a terrible time seeing her suffer like this. Is there still hope that it could just be an infection and with the nutrition she could maybe fight htis. THey have her on an IV antibiotic drip now....So hope that helps too. She has osteomyeletis in the bone which has caused this major infection....

Tracey, good luck with the tube tomorrow. You are in my prayers/

Kirk, hope youa re doing well...and Sheldon, thanks for the advice. I will look into that.

Thanks again...I just wish my mother would get better..But she keeps getting worse and I cry every day....and it is so hard not to cry in front of her. Is it bad to cry in front of her? I have to fight back the tears all day and night that i am with her..It is so hard..Then I think, why cant we show emotion???? Is it really that bad to do? I am in pain watching her and she must see that.....I try to be strong for her...and I try not to cry in front of her..But cry the minute I leave.....This is so hard. THanks again for your kind wishes

Love
Stephany

Stephany,

Your post was well timed. The doctor was all ready to do his tube this week while he is in the hospital and when the doc said something about it today he backed out. He said that the docs told him that it wasn't good for men to do.

I think that the drugs are seriously affecting his mind because none of his doctors have ever said anything.

But all my arguing met with resistance so I am not going to bug him about it. I am learning that there are some lessons that some very hard headed people just have to learn on their own.

I am a bit angry about the whole thing because I know what will happen. He is not really eating much now and if it weren't for the home IV the doctor ordered he would have already withered away.

There is no doubt in my mind that he will need the tube soon and it will mean yet another trip to the hospital which could be avoided if he would just do it now. Also I know that he is going to wait until things are so bad that the whole procedure is going to be more painful than it has to be.

I think I am really gaining an understanding about what it has been like for you in this battle with your mother over the past few weeks.

It certainly leaves one feeling helpless. Glad to see you are back. I wish your mother all the benefits that she is bound to receive from her tube.

Let me know how it goes. I might need some amunition. I have told Harry about you all here on the site and I have tried to get him to look at it but he doesn't want to. He doesn't seem to care much for talking to people who have been through this. Why? I have no idea. It always makes me feel better.

I have been told that it is a denial thing but I am certainly no expert.

Talk to you soon.

Cindy

Stephany,

I'm glad your mom finally got a PEG, just sorry it was under these circumstances. The next thing that must be done is to get her pain under control. Please make sure the doctors address this ASAP. I'm assuming she will be in the hospital awhile? Hopefully at least a few days so they can get the pain under control and get some nourishment in her.

You asked about the possibility of your mom's airway getting blocked. If you meant blocked by the growth of a tumor, yes it is possible. Or at least it can feel that way. Heather had a tracheotomy done when they did the biopsy to confirm her recurrence. She had been feeling like she couldn't breathe right for a couple weeks previously, so the surgeon left the trach tube in. He never actually said that the tumor could block her throat, but it was implied.

You asked whether this could just be an infection and your mom could still fight this. I'm afraid even the doctors probably can't answer that for sure and I'm cetainly no medical professional, but I don't think it sounds like it is only an infection. From your mom's condition, I think the CT results are correct and there is a recurrence. I'm sorry if that sounds cold, but I have been following your posts for quite awhile now and I see so many similarities to Heather's case that I just want to cry. I would never tell you to give up, but I think the reality is that your mom will not survive this. As long as she is strong enough to receive chemo or something like Iressa, she may have some relief from her symptoms and have a short reprieve, but at this point, chemo would probably be mainly a palliative measure. It can prolong her life some if it can shrink the tumors, but it will be hard for her to continue it if she doesn't get in better shape. Chemo can be really hard on the body and a person can only stand so much of it.

As fas as not crying in front of your mom, I totally understand. I tried not to cry in front of
Heather or even in front of the rest of the family. In retrospect, I should have let myself cry in front of them, at least once in awhile. I think the time has come for you to share your grief with your mom. As you said, she must know that this situation pains you and it might be healing for you both if you acknowledged your fear of this together. If there is a recurrence, the time may soon come when you have to discuss end-of-life issues. It may be well that you get your feelings in the open now and get past that first hurdle. It is never easy to admit that your loved ones are mortal and the thought of losing them is a pain no one should ever have to bear, but unfortunately that is part of the reality of this life of ours. I know I have thrown a lot at you and you may well want to slug me for saying it, but you should at least consider the possibility that medicine has done all that it can for your mom. I am sorry to be the one to say these things. I truly hope I am wrong and there is no recurrence and you and your mom have many years together.

Rosie

In case Cindy and Rosie are on line right now, I am going to respond to Cindy first and then Rosie :-)
steph

Cindy,

Wow...You are experiencing what I experienced with my mother. But there is only so much you can do. My mother was very stubborn as well and finally agreed to the feeding tube when she could no longer swallow and we had to admit her under emergent circumstances. Cindy, my mom would write me notes (because she has not talked in a while,...she cant) that her health decisions are up to her. I tried to convince her for months that she did not have to go through the agony of trying to eat but she kept at it...My twin told me that she wanted to keep what little dignity she had left..So I did not push it too badly.....Then, she took me aside and said she was ready..But then she would not go for the procedure until it was a little late....But Cindy..She is not in more pain because of it if that makes you feel better....The procedure for my mother was not bad...I am sorry if I gave you that idea....She has lost weight..In fact 5 pounds in 5 days...She is now 110 from 240 or so....with no feeding tube....The pain is caused by her recurrance of cancer, not the lack of feeding tube....or the feeding tube....If that makes you feel better.....

Also, I found a wonderful lady from this web site...I would email her daughter here and she only emailed her a couple of times....They have the same doctor here and live a few miles away from one another..My mother had a tough time as well with that...Just be patient and make suggestions..That is my advice..When I tried to push my mother, she would take the opinion..I will do what I want when I want, etc etc. You are a great wife and caregiver but it is his life..I had to remind myself that of my mother..In fact, she wrote me a note just yesterday that I was too bossy and to stop asking her questions LOL...like when I would ask if I could get her anything or if she needed anything....

But. I have to say..My mother should have gotten this tube a long time ago..The pain and frustration with trying to eat for the last six months has been unbearable for her.....She even bought the 400 vitamix product to help her blend, etc....We tried soups and everything..Nothing worked..She couldnt get anything down.......

Hang in there Cindy..and please let me know how YOU and your husband are doing..It is so hard on the caregiver Cindy...How is school coming along??? I actually went to my office..Drove an hour and a half and as soon as I arrived, my father called to tell me my mom was in ER so I drove an hour back to the hospital....I have a lot of work to do and am trying to juggle it...BUt, Cindy, please try to keep school for yourself.....When I am at work it is a good distraction for me...

Question: Why is a tube bad for men to do??The men in here I have posted with have never told me that..Maybe I just dont know..Maybe you could try to show him some posts from the men in here that have had success with the tube..Maybe that will help.....:-)

Hang in there CIndy..Believe me..I cried all day and night..When My dad handed me the CT results, I just cried..Not in front of my mother...I couldnt believe it....My poor mother...3 surgeries and 6 weeks of radation to have 3 recurrences....She just cant get a break.....Now she is sitting in a hospital bed now...And I am suppose to go to work..But I will go for an hour or two and then spend the rest with my mother...It is so hard.....

Good luck CIndy..and please let me know as well..And I am glad I am back too :-)

THanks again and God Bless you CIndy

Stephany

Rosie,

Thank you for your post....You were not cold at all..You were just realistic and that is what I need to hear..The doctors are saying what you are...That there is nothing that can be done to CURE her...But only pain management.....But the patches she is wearing arent even helping.....Rosie..My heart goes out to you as well..I feel so bad for HEather and for what you and her went through...My goodness...I am speechless right now.....

Rosie, what do you suggest to me for my mom??? What kind of pain management, etc....I am just so lost right now...And you are so right about everything.....I feel sometimes why not cry in front of my mother...And the thought of losing her is the worst pain I have ever had to experience......So far in life ( I am 40 now)...

We canceled the biopsy...The CT was pretty definitive about a recurrance..we cant know for sure without a biopsy but it looks that way, and we dont want our mother to suffer at this point..Chemo is not an option..She is way too weak and has a nasty infection..Osteomyeltis in her jaw bone right now..So she cant do it anyway..The doctor did mention Iressa but that is my mothers decision.....She has fought so hard....But she has suffered terribly along the way....and if she could be cured, then great...But I am afraid to prolong her suffering...That is not fair to her..It is completely 100% her decision...But I will support her anyway she decides..But she seems to have given up....She is tired...and weak.....

Rosie. this is a HARD QUESTION....But Rosie, the doctor 2 months ago told my mother she had less than a year to live..Since that time, she has really declined healthwise...You said my mom and Heather's cases were very similar...So, from your experience ( I know you are not GOD and dont have a crystal ball)..But I am curious....WHat can I expect..and how long do you think my mom can keep on fighting this? I am just curious as to what to expect here.....Is the pain going to get much worse?? Will her airway be blocked?? All these things concern me and I am scared....The unknown is frightening and that is what I am going through.....I am scared for her....I am more scared of the suffering than losing her right now......I am trying to be a good daughter and do everything I can to try to make this better but it just seems to get worse..I try and try and try.......But maybe I just need to accept the fact that it isnt up to me an I cant fix it...Im not God....

Thanks Rosie so much again...I just love ya

Stephany

Hello Cindy,

I can't offer any better advice on the feeding tube than the above postings. I can offer my support for both you and your Mom. Being a caregiver takes a special person. I think you are one of them. Remember to take time for yourself as well. As stressful as it is you will need to have a clear mind to absorb all you will need to know.

Best Wishes, Danny Boy

Stephany,

I've been away most of the day and have to leave again soon to take my granddaughter to her session at The Caring Place, but I will post a reply this evening. I may also send you a private email.

Briefly, though, please don't worry too much about your mom's airway being blocked. If she starts to have trouble breathing, she can have a tracheotomy done for relief.

Rosie

I am a male and had a feeding tube (PEG) in my stomach one week prior to Treatment. I did not want them to put it in until at least my third week of radiation...However, they would not let me start until I got the PEG tube. I don't know how I would have made it without it, as I was too sore to drink water the end of my 2nd week. I am amazed at those who got thru without it, but have observed that most are usually very large guys with a lot of weight to lose anyway. It is no picnic, but getting it after treatment could be tougher.

good luck,

Weldon


SCC-Base of tongue, Stage IV, Rad with 3 chemo treatments. Clear for 2.5 years

Well I wasn't a large guy, at 5'6" and 169 lbs going into it. I dropped to 109 lbs after treatment was over. I did it without a PEG, but it was VERY difficult so I am not advocating this. I am happy with my new weight of 145 lbs.
It wasn't the weight loss that was the problem - it was the atrophy of all of my muscles and the time required to get upper and lower body strength back to an acceptable level. We can all stand to loss the fat.

Congrats on 2 1/2 years Weldon - I'm right behind you.

Stephany - they can increase the (Fentanyl AKA Duragesic) patches to 300 mg if necessary.

Iressa may be worth trying - it is supposed to have few toxic effects as it targets the EGFR in the tumor cells themselves. Please note that only 10% of people who take Iressa have any response but those that do have had rather dramatic responses. Total cure in some cases.

Me too was just a medium-sized woman at 5'4" and 116 lbs when treatment started. Eating became very painful when I was in the middle of treatment. The doctor suggested a nose feeding tube when I lost 10 lbs in a week but I was scared of the idea of getting a tube through my nose. If the PEG tube had been an option then, I might have thought of getting one. Yet I am very happy that it wasn't an option because it turned out that I could make through the whole treatment without any feeding tube. The doctor prescribed some medicine that numbed my mouth before I took my meals and it did well to reduce my pain. I managed to eat 3 meals a day ( mostly congee and milk and icecream) and was discharged from the hospital when my weight became stable. I totally lost 16lbs and gained back my lost weight in 6 months' time. So I would think that the use of feeding tube has nothing to do with the size of a person since in Hong Kong most people are of a smaller size as compared with the westerners but only 25% of patients need a feeding tube during their cancer treatment.

Karen.

CINDY
Hi I can so relate to your frustration. My husband Bob finished treatment in October, he was as stubborn as they come when it came to any suggestions from me. I gathered a ton of support and information from this board and tried my best to stay one step ahead of what might be coming next, so I could somewhat be prepared. Thank God I did. He fought me on pain management because his nurses hadn't discussed it,(when they asked how he was he was always politely said fine so of course they didn't know how much pain he was in) he fought me on the constipation meds until he was completely miserable, he even had issue with the humidifier. He definitely wouldn't even look at this board. He did listen halfheartedly when I recieved emails from members of the board. I was so afraid to nag at him, I was terrified to upset him. Regardless, in some instances like the pain management issue I flat out told him I was calling the treatment center myself, and I did. I bought the senecot and put it by the sink with a note, and got the humidifier and set it up after he went to sleep, made him shakes from the info on the board and just brought them to him. It wasn't easy and at times he wasn't very nice. In hindsight he now realizes that without the information and support we got here we probably wouldn't have made it through intact. Now he actually denies being difficult about things. But I know better and he is on the mend so it was worth it. BE BRAVE, DO WHAT YOU FEEL IN YOUR GUT IS RIGHT, even if it means you call the Dr yourself AND KEEP COMIN HERE. I couldn't have done it without this community.
Denise

Denise,

Are we married to the same guy or is the selection just that narrow? LOL

I plug away at him and sometimes I even get things my way. But I know that someday he will understand that I wasn't here just to piss him off. :-)

Thanks for your post... it sounded so familiar.

Cindy

It is so nice to hear that people made it through this without and with a PEG tube ok. But, my mom had the surgery yesterday and started feeding today and the nurse in the hospital today showed me how to use it...But you are NEVER GOING TO BELIEVE WHAT HAPPENED TODAY. Early this morning before me and my dad arrived at the hospital, the doctor did NOT read my mother's chart and my mom had already doubled up on pain patches and the doctor prescribed yet another double dose...My moms blood pressure dropped and she stopped breathing..When the nurse FINALLY MADE HER ROUNDS, she saw my mother was blue and was able to save her..Now she is on monitors...I just arrived home at 10:30 and feel ok to have left her and I will return early in the morning....I almost lost my mother today...it is so hard..Right now, she looks weak, only 110 pounds and is suppose to get out of the hospital soon.....I am suffering so bad watching her suffer. I want so badly to make it all better for her, but I cant. She thought she was going to die today and wrote my dad a note to that effect. It was just awful... But thank God, I have my mother still, for how long, I do not know...But I love her dearly and will cherish the time I have left with her....When she gets home, I will look into getting home care for her.....I am so thankful for this forum here to help me through this..Thanks again to you all..My friends
Stephany

And my husband wonders why I micro manage his meds.

Stephany, you hold strong. You can do it and the nutrition that your mother will be able to get from this will make a marked difference. It is an amazing thing to see how a body can perk up when it has enough food and water.

I am so sorry that any of us have to go through this. It is so day to day and since I have lived mostly planning and talking about next week and next year it has been a difficult adjustment.

We are here whenever you need us Stephany. I cannot always promise that I will be emotionally stable :-) but I will be here. I agree that this place is a sanity saver for sure.

I have a little piece of good news today. They gave Harry his Cisplatin yesterday and we anxiously waited in anticipation of the sickness that followed last time. It only took 12 hours last month. But today, almost 24 hours later, he is doing fine. No nausea, no vomitting, and he is very happy. I cannot begin to say what a relief it is that so far the docs have been able to keep him from getting sick.

Doesn't mean he won't be sick tomorrow, but it is good today and that we celebrate.

Tell your mom to hang tough. Once she gets the nutrition in her that she needs she will feel much better. You are a strong person and you have her genes so I would guess that she is a pretty tough lady herself.

Hang in there and let us know how you are doing when you can.

Cindy

CIndy,

On my way to the hospital...Only have a second here..Thanks for your message. :-) And I am so happy to hear you are having a good day with your hubby. That is awesome..Hopefully, many more will follow and he will not get sick again....I will keep you and your family in my prayers...On my way to the hospital

Thanks again
Stephany

Dear Stephany,

You live in my neck of the woods, which hospital is your Mom at?? That is so scary!! I have been reading your posts and feel so bad for all you are going through with your Mom. My heart goes out to you. I was very close with my Mom too (she died 5 years ago) so I can totally relate to all you are feeling. You have been the BEST daughter, and I know your Mom appreciates it. I will pray everything turns out for the best and you can get her home soon. You take care of yourself OK and keep us posted....

Hugs,

Shelley

Stephany,
I'm sorry I didn't reply last night. I'm really having trouble deciding how to answer your questions. I'm tempted to take the chicken's way out and just decline to comment. It's really hard to know how to answer something like that and I know sometimes I upset people by being so frank. And for some reason, Heather has been on my mind a lot lately and I just don't know that I am in a good frame of mind to comment reasonably. But I will try.

As far as the issue of pain, the worst of Heather's pain came from the tumor in her spine. The pain in her mouth and throat was pretty well controlled by morphine. Once the spinal column is compromised, I don't know if there is any pain reliever that will work well, but morphine and other heavy duty narcotics work very well on controlling most other pain. Your mom should probably be on an IV drip of morphine, so she can have round-the-clock, controlled pain relief. IF morphine doesn't work or she has a reaction to it, there are many others that can be tried, but the key thing is to have the controlled release through an IV. We had a portable IV pump at home to administer the morphine. I did learn to change the bags myself, but generally the home health nurses do that and there is no need for you or your family to have to worry with it. You asked if the pain would get worse. It might not, but many times it does. It depends on where the tumor(s) are, how big they grow, whether they press on any nerves, etc. That is why it is important to get your mom some good consistent pain relief now, before it gets worse.

If the doctors have definitely said there will be no more treatment, you should also start to think about calling a hospice care group. They are experts in pain management and they can help with a multitude of things, including administration of all your mom's meds. They usually have volunteers that can come in to help with personal care issues if needed and also just to give the family a break from caregiving.

As to how long your mom might have, I don't think I can touch that question with a 10' pole. There are just too many variables. If your mom gets some good nutrition, that may give her the strength to fight longer. It didn't really help Heather, but her problems with the PEG tube started in Dec. For 6 months, we fought with the PEG and with the doctors until they finally got wise and put in a PEG that actually worked. (Altogether, she had 4 PEGs.) Unfortunately, her digestive system had been under too much stress for too long a time and she ended up having to go on IV feedings. I suspect the lack of proper nutrition for such a long time contributed to her quick decline. Had she had good nutrition all along and if the tumor had not started to destroy her spine, I think she would have had several more months.

Even though I do see some similarities between your mom's case and Heather's, I also see many differences and for that reason, I really can't comment on how much time your mom might have left. Even most doctors won't narrow it down much. 'Less than a year' could end up being 2 weeks, 2 months or 2 years. I know that's no help to you, but I wouldn't feel comfortable even hazarding a guess. I will say that when Heather's recurrence was diagnosed, the surgeon said she had 'less than a year' and Heather lived about 6 1/2 months. And again, I think she would have lived longer if she had not had spinal column involvement. Just my personal, non-medical opinion.

I'm sorry for being so windy. I don't think I'm capable of a succinct reply. I always write a book! I just wish I had something to say that would be of real value to you. Hopefully, some of this will help a little.

Rosie

Rosie,

Personally, I like you windy. :-)

You explain yourself well and you are always on target and the fact that you are so willing to share what must be the hardest thing you have ever been forced to deal with just makes me more in awe.

Sometimes when I think about the possibility of my husband not surviving I often wonder how I will move on. I think that you and I have discussed this subject before and you were very frank, which I appreciated greatly. You help to remind me that even if the worst happens, I will get up the next day and I will find a way to make it.

The fact that you continue to talk to people here is something that impresses me most.

I think that the question of how long for any of us is always lurking somewhere in our gray matter, but it has become more forefront since we all have had to face this "life robbing" disease.

It has changed everything and it is a permanent change. I think that I have struggled most with the grief of losing the life we had. I know that we can have a new and better life after this and I am striving for that everyday, but in the beginning, it was the loss of the life we had that was hard.

I sometimes wake in the night because I was dreaming that he was gone and I have to look across the bed to see he is still here. I have trouble sleeping at night because I get more time with him just in case. I want to make the clock stop and I want things to be different and coming to grips with these realities has been emotionally expensive.

One of the things that helps me the most is coming here to this website. I can never thank Dan enough for pointing me this way. If I didn't have you all to talk to about this stuff I would have already had a breakdown I am sure.

I have friends and family but, as I am sure you will agree, misery loves company and there is nothing better than knowing that you are talking to someone who truly understands. It is one of the reasons that my therapist and I get along so well. She lost her mother and her younger sister to cancer so I know when I talk to her that she understands what I mean and how I feel. Just like here.

Keep being windy. I love to read your messages and I gain strength from knowing that it is possible to continue if the worst does happen. I have to hold onto that so I can make it through each day.

So Thanks Rosie!!!

Cindy

Stephanie,
I'm so sorry I have been not been in touch for such a long time....My heart truly goes out to you and your family. I've seen your posts the past few times that I logged on and I have been praying so hard that it is not a recurrance. I will be keeping your mom in my prayers and you hang in there. If you need anything at all please send me a private message or call anytime you need to.

Love and hugs,
Dani

Rosie,

I agree with Cindy 100% Your posts are so helpful and I am amazed at your strength...I have sent you messages before about how much I appreciate your thought and care that you show in this forum to me and others here. Especially with all you have been through!!

I just came home from the hospital and it is almost midnight...and my mom is going to get hospice care. Thank you Rosie....

I have another question....My mom had excrutiating pain tonight because mucus had dried up in her mouth and she cant swallow. She is on major pain meds, the feeding tube, and oxygen. She is basically miserable and wants to die at this point. She wrote me a note tonight to "let go". That was very hard to read...She knows how much I love her..She is my best friend and I am losing her..This is awful...But, I have realized that it is better for her not to suffer. That is why I asked you that Rosie. I just cant bear the thought of months of suffering for my mom. She has had enough of the fight and pain. I am distraught.

Thanks for your support once again....I will write more later..Too choked up at this point to continue typing.

Lots of Thanks
Stephany

Question...

Oops I forgot the q. The q is what can help her in taking out the dried mucus because the pain is so awful for her to even moist her mouth with the sponge and water to get the mucus out. Please let me know as I am going to the hospital again in the morning..Thanks to anyone who can help me with this.
Stephany

Hang in there Stephany,

I want to say something to try to help and yet I have no words of wisdom. I have no words at all. I have been thinking about you all day. I would give you a hug but my arms aren't quite long enough to reach from Texas to California. So maybe you can take this virtual hug.

Sometimes we really need them. I went last night to a meeting, that under normal circumstance I would attend as the member I am, but I couldn't stay long. I just had a drink and said hi to my friends and then I had to go pick up the kids.

I don't really know why I went. But I got a lot of hugs and they were good and sincere and maybe just what I needed. So I am sending some to you too.

Stay strong, we are here whenever you need us.

Cindy

Cindy,

Thanks for the hug..Sending you a big one back....Thanks so much...I have been sick inside...wondering how long my mom has..Is today the day??? Is tomorrow the day?? This is so hard Cindy.....I just wish there was something I could do for her, but there is not...IT is killing me....I have to leave for work and it is 6:30 am..Just a few hours since I went to sleep and I am sooo tired and emotionally drained....I am only working a few hours and then back to the hospital....

I am so glad you saw your friends even if for a minute..I had plans last night (standing plans every week) But canceled because of my mom...I think it is important to go and have that support...I will try to keep my appts even if brief from now on...

Time to hit Malibu Canyon in this rain mess :-(

See you later

Love
Stephany

Stephany,

Sorry I didn't catch your post last night. The only thing that worked well for Heather in getting the mucous out was a suction machine. Heather had a Devilbis (sp?) There is also one made by Yankueur (sp?). They are all similar to the suction machines used by dentists. Heather's mucous was not very dry, though. I'm not sure if it would work well with dry stuff, but if your mom could get enough water in her mouth to get it moist, it should work very well.

It should not be painful for her because the suction tube can draw the mucous out with only a light touch. The hospital Heather was in had units on the wall in many of the rooms, but we found most of them didn't work very well. They just weren't strong enough, esp. the ones on the higher floors. I think they may have been too far from the power source. Anyway, we took the portable one with us and used it the entire 11 weeks Heather that Heather was in the hospital. It was noisy, but it worked. Ours had a power cord to plug in and also a battery backup.

If her hospital room doesn't have a suction unit, maybe she can be moved to a room that does. Or better yet, ask your mom's doc to order a portable one for her. Then it can go home with her when she leaves the hospital.

I am so sorry your mom is in such pain. Have you asked the docs or nurses why they can't get it under control? I would demand some answers. I'll try to check the forum tonight and see if I can catch you online. There is probably more I should say, but I will wait to see how your mom did today.

Rosie

Hello Rosie,

My mom is home now in a hospital bed with hospice care only coming a couple days a week. I am worried my dad cant handle it because it is so much to do, so we are looking into getting a nurse. Does insurance or medicare usually cover a nurse? I know hospice is covered. She is not doing well at all. A lot of pain and discomfort. I am not going to work tomorrow and am spending time with her so I will look into getting the portable suction for her...You are right about getting it moist fo rthe suction to work..But....She is dry and when we try to moisten her mouth, that is when she gets in excrutiating pain...Thanks Rosie again!
Love
Stephany

Hello Rosie,

My mom is home now in a hospital bed with hospice care only coming a couple days a week. I am worried my dad cant handle it because it is so much to do, so we are looking into getting a nurse. Does insurance or medicare usually cover a nurse? I know hospice is covered. She is not doing well at all. A lot of pain and discomfort. I am not going to work tomorrow and am spending time with her so I will look into getting the portable suction for her...You are right about getting it moist fo rthe suction to work..But....She is dry and when we try to moisten her mouth, that is when she gets in excrutiating pain...Thanks Rosie again!
Love
Stephany

Stephany,

I can't believe they sent your mom home before getting her pain under control. Have the doctors said why they can't get it controlled? Please make sure the hospice people know how bad it is. They should be able to help.

I'm sorry I can't help you on the question about a nurse. Every insurance is different and I don't really know anything about how medicare works. I guess you would have to call the ins. co. Actually, the hospice group should have a social worker or coordinator who should be able to help you with stuff like that. Our hospice also had volunteers to come in on days that the nurse didn't. We never used them, but I know they were available. Again, there should be a hospice coordinator who can help you with all this. Please don't hesitate to use all the services they provide. You and your dad will quickly wear yourselves to a frazzle trying to do it all yourself.

I want to add something to one of my previous comments. I said I thought Heather would have lived longer if she had better nutrition and if the tumor hadn't moved into her spine. The reason I felt that way was because the chemo she was on was starting to shrink the tumors. In fact, for a short time, she had an amazing turnaround. But because of the complications from the destruction of her vertebrae and the digestive issues she suffered, she couldn't continue receiving chemo. She was just too weak. It really wasn't too long after she stopped chemo that she died.

When I originally made that comment, I was trying to give you hope that your mom would live longer than Heather, even though I wasn't very hopeful that would actually happen. After reading your post about not wanting your mom to suffer needlessly, I can see that wasn't necessarily a good idea. I still don't have any idea how long your mom might have, but since she won't be having any treatment to try to shrink the tumors, I would probably guess her time would be relatively short, compared to Heather's. Especially if your mom has given up. Sometimes that can have a profound effect on the time one has left. But again, this is purely speculation and I am probably way out in left field on this one. And if I say anymore, people will think I am really loony, so I think I'll quit jabbering now. Let us know how things go.

Rosie

Stephany,
I think of you and your mother throughout the day and wish there was something that could be done to make it all go away. It's unimaginable to me what you are dealing with and what your mother is going through. I'm 43 and still have my very healthy mother and my very healthy grandmother, it doesn't seem fair that you have to go through this. But, it is the task that has been set in front of you and all you can do is your best, no one can expect anything more. Something Rosie said in one of her posts always stayed with me. It was about making sure to ask about last wishes, to ask about any arrangements a terminally ill person might like to make. I have no advice on how to go about doing that but it just makes great sense to me and something I will do if I'm ever in your position.
Take care and keep us all informed. We are here to help.
Minnie

Thank you Minnie and thank you all for your thoughts and prayers. She did write out her final wishes for us. IT was hard to hear what she wanted. But I guess she has done that already.

This sucks :-( The thing I have a hard time wtih is that I want to do something to help her, but there is nothing really I can do. But I do my best.

Thanks again. I will keep you posted. I am going to her home to see her soon.
Cindy, How are you doing?
Thoughts to all of you as well,
Stephany

Stephany, you and your Mom are in my thoughts and prayers. Love, Carol

My thoughts are with you Stephany. I have been wanting to write, but i am at a loss of what to say. I know exactly how you are feeling. All the memories are way to fresh. I sorta feel like we went through the same thing. Having lost my mom I am thinking back on what I wish I would've said. So many times I wanted to let her know it was ok to let go. That I would take care of dad. My mother to was in alot of pain, also. She too had given up, and wanted peace. We didnt know the end was so near, and i dont think I wouldve been able to handle knowing it was. Now i do find peace and comfort knowing she is no longer in pain. Even though getting by day to day is hard, with each new day it is a little easier. I guess all i want to add is to talk with your mom, let her know she can let go. I am sure hospice can help with that. I hope i am not saying something wrong, it's just something looking back i wish i wouldve talked to her about. You and your family are in my thoughts.

Dear Stephany
You are such a loving daughter, your family are very lucky to have you.
Your agony just jumps right out at me and I wish I could help make it easier for you . The only thing I can think of is, Blessed Release. At this point you just want her to be free of this pain and suffering , Rosie is right she should not have been sent home still in such pain.
Even though you are so busy with your mum you still find the time to give the rest of us some encouragement, I really appreciate that .
Thank you Stephany.
Much Love

Marica

Dear Stephany,

All I can say is I'm thinking about you and your Mother. In times like these I can't think of the right things to say. I feel your pain and as Rosie said, A basic right of a patient is adquate
pain control. There's no excuse for your Mother to suffer such bad pain. I would demand that right. Your Mom is lucky to have raised such a caring and loving daughter.

Love, Danny Boy

Stephany,

I am not so good tonight. I am drunk and lonely and sad and worst of all I have failed my son. I am devestated.

Most of my life has been a wealth of disapponitments and I have tried so hard to not give them to my sons. But I have failed. I got an email tonight from his scout leader saying that since I have not been able to get him to all of the activities he will not receive his "arrow of light". How can I tell him that after working hard for 5 years he is not going to get to graduate to boy scouts with his buddies?

They can't do this to him! It is not his fault! I am the one who let him down. And I cannot make it better for him.

Why do my children have to cry? I hate this disease!!!

It takes everything. I want my life back. Please! I cannot type through my tears. Sorry.

I have thought much about you today, The hardest part of a support group is that you feel each others pain.

I really wish I could hug you because I could use one myself.

Aarrrgggg!

Cindy

Cindy,
it pisses me off to no end that the so called "can-do" boy scouts and especially the scout leader couldn't have made provision to help you and your son out during this trying time. I would politely explain the situation to the scout leader and if that doesn't work tell him to go and f*** himself, that your son is better than an organization that touts itself as being for God and country when it lacks compassion. Remind him of their so called oath:

Scout Oath
On my honor I will do my best
To do my duty to God and my country
and to obey the Scout Law;
To help other people at all times;
To keep myself physically strong,
mentally awake, and morally straight

And their "vision statement"

Vision Statement
The Boy Scouts of America is the nation's foremost youth program of character development and values-based leadership training.

In the future Scouting will continue to

Offer young people responsible fun and adventure;
Instill in young people lifetime values and develop in them ethical character as expressed in the Scout Oath and Law;
Train young people in citizenship, service, and leadership;
Serve America's communities and families with its quality, values-based program.

Hypocrites!!!! They should be ashamed of themselves!

Wow....Cindy,...I will respond to you in a minute

Stephany

Carol, Karen, Marica and Danny Boy, and CIndy,

Thank you so much for your thoughts and prayers....Today was an awful day for my mom..With pain and anxiety....But I took all of your advice and told her it was ok to let go..Thank you so much for that advice..I actually wrote her a note because I could not say the words without hysterically crying..I am actually meeting with the hospice nurse tomorrow morning at 9 because she ahs requested to talk to me becuase she said my mom doesnt have long..weeks if that....My mom requested that my dad, sister and i go the mortuary to pick out a plot..I find this pretty strange since she is alive, but it is her request..So I have all that to deal with tomorrow...It is all moving so fast..But I had a good day with my mom helping her, doing all the laundry, cleanign the house, and sitting next to her talking to her, rubbing lotion on her, Taking her to the bathroom, changing her and the sheets, and administering medication....This is so hard. I cant imagine anything worse...THan to see aloved one suffer..She is taking ativan for the anxiety which is helping..She is home with hospice and they come, but not often enough....But they are available by phone, which I call everyday :-) and they really help me.....My dad is there all the time helping as well....I just wish I could take the pain away and fear away....

I have an amazing thing to share with everyone....I had a dream last night that my right leg was being amputated from the knee down...Actually a nightmare..and when I shared that with someone, she told me that I had that the dream represented losing a part of my life, of myself...My mom.....That was an amazing insight..and something I will never forget...

But through this all, I amaze myself at my strength..But I just cant stop crying.. I am in tears now and they just dont seem to stop...and I have so many other MAJOR stressors in my life now as well..all at the same time..That I feel sometimes, that I dont know how I will get through this...But the most important thing to me now is getting my mother through this....I cant even sleep anymore...I just worry about her 24/7. I wrote her a note tonight also that I love her and she is the best mother and my best friend.....that it was ok to go..that we will all be ok....I dont want her hanging on for me and my family...suffering anymore...I wonder when will be the day...Tomorrow, the next day. next week..the week after..This is just awful.

Thank you all so much for your support..I usually read these posts around midnight when I get home and it is such a support for me..Thank you all...and please know that i am here for you all as well.....

Danny Boy, we are finally getting the pain under control...Just increasing the frequency of morphine.....and hospice is really helping...better than the hospital!!

Karen, you said nothing wrong. That was great advice...

Thank you all again
Much Love,
stephany

Gary, I just love your comment and response..Right on!

Cindy, Gary is correct.....I cant believe the boy scouts would do that to your son..You cant blame yourself and make yourself feel guilty..Cindy, you are already going through so much with all of this..That to add guilt now, would not be fair to you or anyone..You did nothing wrong.. You DID NOT let your son down..You are a great mother and doing all you can do.....If you were unable to attend all the meetings, you were unable to..Please dont blame yourself..

I am sending you a cyber hug Cindy..I am here for you anytime you need me....Please dont get drunk though.....a little wine is ok :-) You have to stay strong for your family..I know it is hard..Believe me, if you read my prior post, I am suffering so badly over here..IN tears right now again....I feel for you and think of you all the time...I hate this cancer as well.. I have other family and friends affected by this disease as well........But your husband is in treatment and will likely recover soon and you can get back to your normal life soon......I will pray that your husband has a speedy recovery.....

cindy, can you email that jerk scout leader and explain what has been going on and to give another chance? I just cant see anyone HUMAN doing that to you and your son..I just cant see that anyone could be that heartless.....Amazing!!

Cindy, you hang in there ok...I am thinking of you and saying prayers for you and your family.....Take it day by day..THis day just sucked! But, maybe tomorrow will be a better day..Remember the day that your husband started feeling better? See..There is something to be happy about...Hang in there.

Love
Stephany

My son's dream is to be an Eagle Scout. My best friend, who died when he was 22, was an eagle scout.

My sons are 8 and 10. They are great kids who are being shit on by circumstances that they cannot control and I am not helping them. I just keep disappointing them.

I ask a lot of them everyday. They do the dishes and the laundry, they often have to stay alone at home waiting for me. They have given up soccer, piano lessons, having friends over to play (because Harry can't risk infection) or spend the night. I have to drag them around with me when I have to work because there is no one else to watch them.

I feel like I am sitting in a chair with handcuffs on while someone hits them and I can't do anything to help them.

We are going broke because neither of us can work much and when I can it is on the weekends only. Our businesses have gone down the toilet.

I know that I am not coping with this at all very well. I can hear everything that is being said but I just can't get it into my heart.

I think that I was fooling myself when I actually thought I could do this. I feel so damned helpless. I can't do anythng to make my family smile again.

My husband is so sick and kind of out of it most of the time, my kids are constantly disappointed, and I am an emotional disaster.

I am tired of crying and I a sure that all of this just sounds like I am whining.

Steph, I am glad to hear about the hospice and your mom.... almost 20 years ago when I was 17 the person in the world closest to me was very sick. She was my grandmother and she had been in a home for almost 4 years.

We lived in New Orleans at the time and I was 14 when my mom put me on a plane to go to Houston to pick grandma up and bring her back with us.

I got my license at 15 and I would go and pick up my grandma every week and bring her to my house or the doctor etc.

When I was 17, I dropped out of high school. I would spend all of my time between working and hanging out with grandma.

One night I got a call that she was in the hospital and we needed to come right away. She had had 2 major strokes 6 months before and had been in and out of a coma up to this point.

I get to the hospital and the doctor takes us into the family room and tells us that the sedentariness of her life over the last six months has lead to her bowel rupturing and she was dying of blood poisoning. The doctor left the room and my mother turned to me and asked what we should do.

I told her that we had to let her go. I knew it was right even though it hurt like hell.
She made it through to the next morning and finally passed.

I was fine up until the time that I tried to walk out of the room. I got to the door and then I fell to the floor and they had to come and pick me up.

I was only 17 and I was forever changed.

But I guess the reason I am telling you this is because I knew we had to let go. Over the years, the pain has lessened but it has never gone away. I still miss her a lot and even just the other day my mother and I were talking about how she would have loved my kids. It just never goes away. But there was a peacful feeling when we knew that she was no longer suffering and sometimes that is just the way things have to be.

Listen to me. First I am feeling sorry for myself and then I am imparting advice. I am sure you must think I am a lunatic for sure.

I guess I ought to take my own advice?? :-)

It is always easier to look at someone else's situation and give advice and always difficult to look at your own situation and heed the words.

Well, before I write an entire self-help book (or self destruction book) here I am going to go. Tell your mom that I sincerely hope that she finds peace and not to worry about you because you have lots of souls here to keep you lifted.

Take care.

Cindy

Cindy,
you sound like an "overresponsible" to me which can do nothing but lead to more frustration and helplessness. Your heart is in the right place but you need help. A network of people and resources is vital to get through this. The American Cancer Society can provide rides to treatment and many churches can help with respite care and other issues. Friends and family need to know your plight so that they can GIFT you with their help also. Why can't other soccer moms step up and pick up your sons and drive them home? Why can't other mom's help get your boys to scouts? Surely your husband has some buddies which could come over and keep him company while you have some time to yourself. Talk to the hospital social worker about other resources and support groups that can assist you.

When I was caregiving my dad years ago I went through tremendous guilt wondering whether I did enough and after 10 grand of therapy later, he (the therapist) set me free by telling me that it wasn't my responsibility to personally DO everything - just to make sure it gets done.

Speaking from personal experience (as in 10 years in AA) I can also tell you that never once have I solved a problem while drunk (and believe me for over 40 years I tried).

Cindy: You might benefit from anti-depressants. You are going thru a hellish time right now, might be the worse time of your life, and anti-depressants can help you keep your perspective and cope with everything. You are not a failure, you are a person with a lot of difficult things going on in your life - ugly things like cancer. Your boys are probably emotionally affected too - frightened and maybe unable to understand (emotionally) all that is happening. Getting help for yourself, like getting anti-depressants from your doctor, will help you find a way to cope a little better with all the stuff that is happening.

Another thought: you might ask your sons' school if there is a school psychologist or counselor that could talk to your boys. They might benefit from talking to someone outside the family right now. They might not want to upset you with their fears. It sounds like you don't have a family/support group near you and you need to create one. Start by calling the school and asking for help for your boys. Gosh, this is a tough time for you. - Candace

I have thought about the antidepressant thing. I am not sure that any pill will relieve the stress, grief, and overall exhaustion I feel most of the time.

I have friends and family to help but they are all busy with their own lives too. They help when they can and for that I am always grateful.

As far as my ranting last night, I apologize. It has been more than 2 years since I have been so inebriated and I think that one in that condition should avoid keyboards.

I was actually in a good mood until I received the email and then everything just came on as a flood. I was washed over with emotions that I have been keeping in check and I let them spill over to this forum.

I doubt that I am the only one who has ever been at this point and I appreciate all of your comments and suggestions. I do have a therapist who is one of the most awesome people I know. We were friends first and she and I understand each other on a level I cannot even begin to describe.

I called her last night and cried and she told me all that she knew I needed to hear. She always knows what to say and when I need it most. She lost her mother and younger sister to cancer so she understands and has walked this path.

I still feel like my children are being let down and no matter how much control I don't have over this thing I still feel responsible for them. I don't think that is ever going to go away.

It is funny that I can hold it all together most of the time and I get things done that need to be done and I choke back the tears on most occasions. But it just takes that one thing to happen and it all rushes up on you and suddenly you find yourself letting go and falling apart. I think that I will really start worrying when I can't pull it back together.

For now I am ok. I cannot promise that this won't happen again and it is nice to know that if it does I have a place to express myself where people understand. That is very helpful when it comes to pulling it back together.

Thanks to all of you.....

I am now banished to the couch as I have become a lethal weapon in my own home. Earlier today I managed to catch some stupid bug and now I have to keep my contact with Harry to a bare minimum. So I am sleeping on the couch for now. It really sucks that he was gone all week at the hospital and when he comes home we can't even be around each other.

Stephany,
I have been thinking about you all day. I hope you are ok. I wish there were things that could be done or said that would make things better but I think we both know that sometimes there is nothing to make it better. It just is what it is. You are in my thoughts always!!

Love,
Cindy

CIndy,

Thanks so much for your kind thoughts. I had a rough day. I have to move in a month and also, my firm is closing in a couple months..A lot to deal with...And of course, the most important..My sick mother....It is all so hard...I cant really type tonight because I am so tired right now..Emotionally and physically...With yesterday making final arrangements at the mortuary....We felt it was better to do now and my mom wanted us to and the hospice nurse suggested to pick the mortuary now as well..It is all so hard...With new job and moving in the next couple of months as well.....I am pretty wiped out....

Cindy, I cant believe that now you are getting sick...I am so sorry....CIndy..I think of you often as well and wish there was something I could do for you as well....I hate Cancer also..It is awful....BUt please know I am hear for you anytime you want to talk or vent :-) But I am just too tired to type anymore but wanted to say hello and that I was thinking of you also

Stephany

Stephany,
It is good to hear from you. I know all about this raining and pouring thing literally and figuratively.

Last night, for example, I was just going to scream. It was 9pm and I was putting the kids to bed (they were bickering with each other), the doorbell rang (it was the delivery guy with Harry's meds) and the dogs were barking and Harry heard all of this in his half sleep state.

I am yelling at the kids, answering the door, and trying to stop my husband from dragging his IV pole down the stairs because he thinks he needs to find out what is happening. He swore that he heard my son call him.

At that moment, I thought that he was going to fall down the stairs (I was still yelling at the kids, of course) and I was ready to pull my hair out.

Yesterday, I saw my husband cry for the first time and I realized that we are all so emotionally taxed in this house. It takes everything I have to try to keep everything under control. But there is absolutly no normalcy in this house either.

I don't know if I mentioned this before but we have 5 dogs and 3 cats and I am about to throw them all out. It is really difficult because 2 of the dogs are ancient and it is time to let them go and Harry just won't. I am begging because the last thing I can deal with at this time is to get up in the morning and find a dead dog.

I am still sick as a dog. My head hurts constantly and my nose runs whenever it feels like it. I am the masked bandit in my house and I have to disinfect everything. At any other time in my former life, when things got real hectic, I would ask what else could possibly happen but I dare not ask that now as I am already painfully aware of the answer.

Harry told me yesterday that he wished he had never married me because he feels like he has ruined my life. He went on and on about how he has brought all of this on us (which I think you and I both know is not true) and I called his best friend and begged him to talk to Harry. I am concerned that, even with the antidepressant he is taking, he might just try to end this all. It is something we have struggled with for a couple of years now, although I always thought that he would just leave me.

Now I am concerned that he is speaking about death and I am frightened. I have talked to the social worker and I try to always keep things positive even when I am not feeling that way. But he is one of these people who never wanted to be a burden on anyone and whenever he thought that was what he had become his answer was to remove himself from their lives.

I never leave him alone when I can avoid it. I just hope that he can hold on. He doesn't think that he can beat this thing. He is convinced that it is going to kill him and sometimes it is frustrating.

He is a strong person most of the time, but he is suffering and I have no idea what to do to help.

I hope that your move and new job go well. It would be nice for something to go right in the middle of all the wrong.

I think of you all the time and I hope that you are doing ok. Take care of yourself and drop a line when you can. It was good to hear from you.

Love,
Cindy

Hi Cindy,
This is a tough time but tons of families, young families, have gotten through it. So can your family. I do think that you need to find a way to take control of your house and of your life. I had four children living at home, 17, 12, 11 and 9 when I was going through treatment along with two grandaughters, ages 4 & 5 that were used to spending half their time at Nana and Grampies. So I know what it's like to have kids and all that entails AND be dealing with cancer. In my opinion, the key to it is to not allow anyone to become a victim of it all. It sucks to have to deal with it BUT it still has to be dealt with. Take the scout incident, I feel just like Gary, I would be on that guys doorstep telling him what he could do with his stupid badge. Then I would call someone above him and tell them what is going on. Get rid of some of the dogs, even if it's only temporary. That is something you can explain to the kids so they don't think their pets have dissapeared.
What type of support do you have? Your post sound like you have none that is truly a help. Maybe I'm misreading.
My husband told me that it was easier for him to deal with it all if he kept focused on what needed to be done at the moment, what could be done to keep it as normal as possible for the kids. He said that if he let himself fall into the trap of feeling sorry for himself that it would have been his downfall. He said he allowed himself to feel sorry for me and for our kids and looked at himself as the person that could make us feel better. I'm not saying his way is perfect, he didn't talk enough about his feelings and when treatment was over, he was convinced of a cure and wanted us all to forget cancer was ever a part of our life. You need to find somewhere in the middle that will allow you to not be overwhelmed with the way you feel and allow you to manage your house,kids and also help your husband deal with his treatment.
Please let his doctor know that he has mentioned suicide.
I hope it gets easier for your family.
Minnie

Cindy,I truly understand how you are feeling now.I have gone through similar emotional turbulence as your husband 3 years ago when I suffered from severe depression after treatment. I also felt I was useless, hopeless and a burden on my family. I thought ending my life was the best way to get myself released. I upset everybody in my family and they lived in fear that they would lose me any time. This depressing mood lasted about a month until my husband got me a clinical psychologist to see me every day. I also had relatives visiting me in turns and watching me, making sure I wouldn't do anything harmful to myself. I was never left alone because my feeling of committing suicide got stronger and stronger. When the situation did not improve, we sought help from the oncologist who then referred me to the psychiatrist in the hospital. From that point I took antidepressants but that didn't help either because the medicine took more than 3 weeks to be effective. After a short while, I was admitted to the psychiatric ward for treatment. I had daily counselling from psychiatrist and medicine for the whole month and then I was discharged when I gradually recovered. After that, I still had to take antidepressants for over a year and I still have to see my psychiatrist every 3 months.I always tell people that depression is more terrible than cancer. I hope that your husband is just emotionally unstable and not suffering from real depression. Get some medical help or support group if things do not improve.

Karen.

Karen and Cindy,

My thoughts and prayers are with you. I am just so tired right now that I cant type much. Just wanted to say I am here if you need me :-)

Stephany

Hey Stephany,

Just a quick note. We went to the radiation doc on Tuesday and he told Harry he had no choice. He gets the tube and there is no argument.

I am looking for a gastro doc to set it up. Should hopefully have it by next week.

I will feel an enormous sense of relief and maybe Harry can come back from the dead. He is so lethargic and miserable and the doc says that it is because he is undernourished.

A message to all you guys out there with terrific and fabulous wives.... listen to her!!! She knows what she is talking about and will only make your life easier.

----[Jumps down from her soapbox]-------

Glad to know you are hanging on Stephany. Keep in touch.

Oh..... and I haven't been arrested yet so I am taking that as a good sign [--wink--]

Cindy

CIndy,


Still no sleep 2:30 am LOL...Just wanted to say that is great about the tube. It will make such a difference....Please let me know how that goes. So happy for you....

Stephany

No sleep here either. I am on the couch until tomorrow when my antibiotics kick in. I have been sick since Saturday and I went to sleep at almost 5am and I am up at 6:45am to get kids off to school and Harry started throwing up this morning.

Our work is never done.

Cindy

Cindy,

Hang in there. It is awful being sick and also having to deal with your husband's illness. Again, I am so sorry. But it will get better and you have to hang in there and try to think positive thoughts. I know how hard it is. I had bronchitis and walking pneumonia for 8 weeks and just stopped coughing about 5 days ago. Stress doesnt help either. Cindy, try to get some rest. It is important to take care of yourself Cindy. I am so exhausted but am recently trying to take care of myself. See you in a few :-)
Stephany

Cindy,

Be sure and stay on that soapbox all you want! There is no doubt that many of us would easily admit that our path was made smoother because of wonderful women like you! As tough as it gets, Harry is much better off because of your persistence and perserverance.

A lingering infection is a sign of your immune system asking for more rest and nourishment for you. I hope you have some friends or family nearby that can jump in and give you at least a moment of prolonged rest. Hang in there.

Ed

Stephany,

I am sorry I have been away for a bit but I want you to know that I have prayed often for you, your mother and your family. I truly feel your pain and I remember the anguish as I traveled this road with my mother. I hate to see your plate so full of so many things that would be tremendous stress if experienced one by one.

Have you asked hospice for an aide, too? They sometimes provide someone that will come and even massage your mother's feet. It may sound like a small thing but I remember vividly the smile on my mother's face and how she told me how wonderful it felt to be "pampered".

With Love,

Ed

Cindy,

I want you to be a little easier on yourself. You have not failed your son in any way. As parents, we tend to get caught up in the competitive nature and want our children to achieve a bit more just a bit sooner than others' children. There was a time when Eagle Scouts were driving their cars to Scouting events. When I was going through treatment, my youngest son moved from Maryland to Texas just in case the cancer or treatment shortened my life. He was working diligently towards his Eagle, too. I tried to participate but I just couldn't keep up and his anger issues around my illness created a "situation" on a camp out and I made the decision to take him out of scouting. I regret having to do it and I especially felt so bad (and guilty) that my life circumstances came between him and his goals. Just as your son, my son knew that my love for him was endless and unconditional. His understanding of my intentions and this ugly disease interfering was way beyond his years. He has thrived and he even thinks he will beat me again this year in our basketball pool. My only fear is that if he does, I can't blame it on radiation, chemo or drugs!!

Wake each day and start your day by thinking something wonderful about each member of your family, starting with you. It will get your thoughts flowing in the right direction. Life may never be like you once remembered, but it will be what you make it.

Ed