I would like anyone dealing with a loved one who is not responding to treatment in an emotionally positive way to contact me.

I won't go through my personal experience again here, but I'm dealing with a person who won't accept the diagnosis that he has been given. Even though, by all accounts, he should be dancing!

I come here every night for inspiration, but it is hard when your condition is so unlike the heros who are fighting this battle.

Love,
Mandi

[email protected]

I'm not a caregiver, but a patient. Some people deal with the diagnosis very slowly and some not at all. I was at a support group recently where it was mentioned that some people want nothing to do with a cancer diagnosis, they want it in no way to be attached to their name. I'm not sure what can be done if they're not willing to accept it. I went through a period of depression for about 2 weeks and there was nothing anyone could say to help. I feel very lonely at times, even though I know there are other going through the same thing. Be steadfast in your encouragement to this person.

Lynn

Hey Mandi,
All I can say is that I will truly pray for you as a caregiver and your husband and his emotional state. My husband is healing now from the last treatments, and it's pretty nerve racking for me because of the extent and aggressiveness of his particular cancer, but he just goes on, does whatever they say he has to do, and is as positive as anyone could be. He is a more positive person than I am as far as personality, so it helps me deal with what has happened to us just watching him be so positive and never, ever complaintive.

May God Bless you as you do what you can to help the situation. I do fight the temptation to mother Dan and tell him what he can and cannot do, but I realize it and stop as he has to decide what he can handle doing and not doing.

Take care,
Debbie

Mandi,

You have experience the roughest part of being a caregiver. When someone you love doesn't do what you think or expect them to logically or rationally do, it is so difficult. For example, my mother had an ileostomy. Before her surgery she made my brother promist to not let them put the "bag" on her. With her cancer spreading so much through her bowels, they had to do it or she would literally explode within hours and die. When she woke up in recovery the first thing she did was look under the covers and yell at my brother. He was crushed and it was very hard for him to even be around her the rest of her life. Although she lived for another 9 months, she never once changed the bag. I tried so hard to teach her and I swore I would never do such a private thing that even turned my stomach at times. Yet, when it needed done, I just did it. I can imagine what you feel like. Everyone accepts things and processes life's events on their own time schedule. Be patient and maybe encourage him to visit with a professional that deals with this type of issue every day.

Hang in there and remember how fortunate your husband is to have some that cares so much by his side...through thick and thin...forever and always!

Ed

Mandi,

I'm not a caregiver, but maybe my perspective will help. For the first month, it didn't hit it was me. I intellectualized the whole experience, basically pretended I was needling these doctors on behalf of my clients (my line of work entails much hand holding, whether it's tax, estate, medical, or even buying their cars). When the realization it was *me* finally hit, I went into a downward spiral REAL quick and it was REAL dangerous.

Hopefully it WILL hit him soon, but it sounds like it could hit him harder than mine did. Just be there when it does. I'm still embarassed to tell my husband how much it meant to me to have him there in those bad times. I can guarantee he'll feel or already feels the same way, regardless if he says it outloud.

It also REALLY helped to attend those Support Groups and one-on-one social worker visits. Hearing about others having the SAME thoughts really helped draw out the anxiety of accepting my situation. It made me feel okay to know others had the same seemingly bizarre thoughts and feelings. It was the emotional turning point out of that spiral.

This board has done the same with my physcial ailments and helped prepare me for other problems. It's such a relief to find out you're not crazy and the symptoms aren't all in your mind. Stick with him, he'll get there, he may just need some coaching.

Sabrina

Sabrina,

Amen and AMEN! After having been on the caregiver and patient side of things it really is a relief when others ask things that you experienced. Like, when you mentioned fastened down by the mask and wanting to scream...time going so slow. I was sitting on the edge of my chair saying...YES...IT WAS JUST LIKE THAT!!

I can't imagine going through all of this without each of you (us). Worse yet, I can not imagine going through this totally alone.

Thank you for sharing!

Ed

Mandi,

I'm not sure I can help directly with your point about "not responding in an emotionally positive" way. However, I can imagine how stressful it can be for you as a caregiver over this period of time.

A little more than a year after I finished my cancer treatment, my husband was suddenly hospitalized for a period of several weeks with a severe gastro-intestinal illness that took the doctors quite awhile to diagnose and begin treating. It took both of us totally by surprise, as he is someone who is almost never sick with anything. As time went on and I wasn't seeing the kind of improvement that I thought I should be seeing, I was getting more exasperated each day, and every night when I drove home from visiting him in the hospital I would scream my lungs out in frustration. There were times during that experience when I concluded that it was harder to be the caregiver than the patient.

None of us can know exactly what you're going through, but our thoughts and prayers are with you for strength to deal with your situation. Please keep coming back here -- you are a hero too.

Cathy

I'm a patient and even though things have went relatively well so far, I also find it hard to respond in "an emotionally positive" way. I have met other cancer survivors (usually not oral) who brag about "beating" it, but there are far too many recurrence and death posts here to allow myself to go there. I do my best to stay in the "now" and out of the future.

Conversely, my program of recovery tells me I must not use this as an excuse (to drink, drug or blame others) and must maintain an "attitude of gratitude". These tools help me to get through each day without dragging everybody else down with me.

This whole deal has just slapped me in the face just how precarious (and also precious) life is. I have to distance myself from time to time from all of this cancer stuff otherwise I start to drift into the negative side of the balance sheet.

I also find myself sharing some of the negative and sad posts with my wife to not give her a false sense of security just how dangerous this disease is. I don't want to give her fear, but I also don't want her blindsided if things take a turn for the worse either.

I can understand the caregiver desire to move on - it's a bit more difficult as the patient. Near death experiences have a way of doing that to you...

Gary, I agree with you that sometimes we need to tell our caregiver that the entire battle is not yet over even though we are in remission. My husband has little knowledge about how dreadful and wicked cancer can be. I have a sore throat these days and feel a bit worried (I made a medical appointment today for peace of mind). My husband responded by saying that it is good for me to get some other kind of discomfort in my body, which means I am back to be a normal person and that indicates cancer is over. What is the logic? When I told him that a sore throat may be a symptom of recurrence, he just thought I was too sensitive and had no trust about my own body.Occasionally, I shared the tragic news I read from OCF, he would say these battle losers were just unlucky and his wife is different from them. Why should I be the winner while others who were younger,who had stronger will or who were at an earlier stage of cancer be defeated? A question I always ponder.My husband felt much happier than me when I first resumed my job. He thought that everything unpleasant was over and his wife is now 100% back to normal. Unrealistic expectations. A caregiver can never understand the emotional state of the patient. We live under stress every day because the harm is already done by our enemy although we claim that we have defeated it for the time being.The horrible memories of shocking news and painful treatment stay in our mind forever. Mutual understanding and acceptance between the 2 parties is important at this point.

Karen

Karen,

I go through the same scenarios with my two teenage sons. My 16 year old (on June 4 actually) is always chastising me because he doesn't see what the big deal is anymore now that I am cured. Every lump, every pain, every uneasy swallow is a constant reminder as a survivor that this is what we will deal with on a daily basis, hopefully with many days in between the stress and worrying. And yes, the reality of this disease slaps us in the face when our fellow OCF warriors share devistating news with us. It hurts just like it is our family because we all have become one large extended family of sorts.

I do not want to minimize what we all are going through but the caregiver has such a tough role, too. We have this disease by circumstance; they have this disease by choice in being by our side. All the care and treatment and the medical teams are pretty focused on us and the caregiver is just lurking in the shadows waiting for the next crisis. This dreaded disease has no boundaries. I am sorry you, your husband and all of us have to go through all this and I really can't imagine what it would be like without all of you. The only thing we don't get from each other is that big hug that all of us need so desparately today.

It sucks...but it is what it is. My heart is so heavy today but I want to be strong for all our brothers and sisters out there that need me. I know we all hurt today and every one of us would do whatever we could to make the pain subside.

May God comfort us all tonight and wrap his love around us and our families.

Ed