I am beyond myself right now!!!!!!!!!!!!!!

I knew people could be cruel and mean but had no idea to what extent they could go - unreal.

I know my husband is going through a very difficult time and he is not looking good. He has lost about 25 lbs and he couldn't afford to lose any weight as it was.

His radiation and chemo should be starting sometime next week, everything is on the works with the insurance right now.

How can some people assume the worst is going to happen????? Some of our friends talk to me as if they knew he wasn't going to make it.

I've had people ask me what would happen with our house, how soon would I sell it if if he dies. I gave them the benefit of the doubt that they intended to ask this question in a completely different manner but it just came out wrong but nothing prepared me for the next question...

Somebody dared to ask me how soon I would wait before I would remarry ---- are u kidding me???

As far as we know, he is not dealing with a life threatening condition and the radiation will be able to take care of the carcinoma in-situ.

Am I in denial here or are people just darn mean and idiots????

Through this process, we have learned who our true friends really are. Unfortunately, not many. The ones we thought would be there for us are not and the ones we didn't think cared enough have gone above and beyond to see that we are ok and have provided us with unmeasurable support.

I detest that look of pitty and the "you poor things" then there are those people who question everything in the process. Why is is taking so long to start the radiation and chemo? Have you called the Drs?? Why is he not gaining weight now that he has the PEG tube? WHY, WHY, WHY???

Do they think I'm just sitting around twirling my thumbs and waiting for their instructions???

Sorry but I had to vent
LILY

Lily,
I have to admit that no one asked my wife any of those questions in my case but I have brought up some of those issues with friends whose spouses are dealing with late stage cancer. There are complicated legal issues when dealing with a life threatening disease and setting up a living trust, will and advanced directives are something that all of us should do - cancer or not. It was certainly tacky for anyone to ask you whether you plan to remarry (I have to admit also that I have told my wife that she should remarry if anything happens to me).

I too am concerned about his weight loss. Most people lose weight during chemo and radiation. I lost over 60 lbs. myself (I didn't have surgery). Why has he lost so much weight pre rad?

I think that you do have a little denial - SCC is a serious illness. People die here all the time, but to balance that out many people here aslo survive and many of them are late staged like myself.

People can be darn mean, idiots and insensitive (I might add). We even see a few of those here from time to time.

I think that most of us had similar surprising experiences. Good friends vanishing into the woodwork and people you didn't expect rising to the occasion. Some people just have the gift of mercy and others don't. Some are downright scared about being up close and personal with this sort of thing and if your friends are in the same age group. this is pretty young to have a peer with a life threatening disease. I am in my late 50's and have had more than a few friends pass away at this point - the biggest shock of my life was when a very dear friend passed away suddenly of a heart attack at the ripe old age of 38 - I was about the same age at the time and it really stunned me. I don't remember ever having any friends with cancer until I hit my 50's and most of them occured at the same time I was dealing with mine.

I kept people in the loop by sending out regular emails. I didn't have to talk and didn't have to repeat the story dozens of times. Some couldn't even handle that and requested to be removed from the distribution list.

People can say incredibly stupid things when people die as well because they are at a loss for words and seem to have to fill the space with something (even if if doesn't reflect their actual IQ). Stuff like -"Oh it's a blessing that they aren't suffering anymore" or "He(she) lived a long full life". How is this supposed to alleviate the grief? I'm not talking about spouses or sons and daughters saying this but well meaning people who are somewhat disconnected from the immediate family.

Maybe your task is to educate them since you are a forerunner of things to come for them as well.

Gary

My husband has lost all this weight because he has not been able to eat solid food since May. Our ordeal has had many phases. Initially we thought we were dealing with a severe fungus infection as that was one of the things that showed up in the 1st biopsy, the 2nd was abnormal cells.

When the 2nd biopsy was done, those results showed SCC and he had his first surgery done in which a small portion of his tongue was removed. The margins came back clear but 2 weeks after this surgery an infection on the left side of his tongue submerged and that was not biopsied until 2 months later. He has dealt with a very severe swollen tongue that prevents him from swallowing textured food. I was having to put everything on the blender and puree it.

He just had his PEG tube inserted a little over a week and the Jevity has not really done much to help with weight gain.

We are in the process of doing our living trust but I guess I have not really been concerned with his reocurrance because its only carcinoma in-situ. There is no tumor or mass this 2nd time. I refuse to give in to the possibility that he could lose his life to this damm thing.

He has told me on many occasions that he feels like something is still very wrong with him and the Dr's are not finding it. He sometimes feels like this is it for him. He has also said that if something happens I should remarry but I tend to ignore that comment. I don't care much for it.

I am doing everything I can to get him through this and we have been reassured that the rads and chemo will take care of it. There are no signs of it spreading and he did have 2 lymph nodes removed in July with the 1st surgery that came back clear as well.

I guess I am in denial. It just doesn't make sense as he is/was not a smoker.

Lily,

I am so sorry that you and your husband are going through this and that you are surrounded by pessimistic thoughts. I've been there, done that. It's really hard to keep the faith and stay positive about beating this disease when others already have your husband dead and buried. My uncle reacted this way when my sister was sick. After Kim's cancer came back for a second time, he asked my mom if she wanted him to plan the funeral! He saw Kim once in the hospital - the entire time she was fighting this and had the nerve to ask that!

You're right. Some people are just idiots. AND you do find out who your true friends are. I am praying that God gives you both strenth to defeat this disease and the negativity that surrounds you. It's a tough road and I don't think people realize how tough it is unless they've travelled it themselves or while caring for someone who is fighting.

God Bless you and your husband.

Leze, your experience is definitely not unique because 4 years ago, when I was at the bottom of my life, I did come across inconsiderate people around thinking that I was going to die soon. My husband's respected uncle (brother of my father-in-law) who claimed himself an expert in cancer in mainland China came all the way to see me trying to find faults with every kind of treatment I received in HK. When he knew that the tumor on my left neck measured more than 7 cm and I didn't have any surgery to eliminate it, he simply said that unless God had mercy on me, I could not survive and that would be the last time for our meeting. When I asked him if I should request a surgery, he then said the surgery might activate the cancerous cells and spread to other organs. He implied that in either case, I was going to die soon. Fortunately, my husband did not take his uncle's words seriously but you could imagine how I felt at that time. He forced me to take his herbal medicine every day, which I didn't think had any help on my body. I had to take it because my father-in-law, mother-in-law, brother-in-law... all said that he was my saviour if I wanted to live. Thank God he just stayed in HK for a week and it was enough to do damage to me mentally. So when I gradually recovered, he felt disappointed and even more so when I travelled to mainland to visit him a year later.
Leze, we can't control what others say in our ears, nor can we kick them away especially if they are our friends and relatives. If I were you, I would just select the more positive words and ignore the negative ones.The most important is that you have strong faith that your husband can recover after being properly treated by doctors and that you go through the ordeal with your husband together.Take care.

Karen

I should have added that when I DID survive some people didn't know how to deal with that either! They had already written me off. They either embraced me as some kind of hero or they couldn't get far away fast enough.

Fear is an insidious thing - it is truly a tapeworm in the soul. It is vital to have a positive attitude. Anxiety is normal and there are meds for that. I took them all throughout treatment. I did envision that I would survive this, but it didn't come right away.

It was hard to find positive things but it strengthened my relationship and dependence on God, as my faith was what carried me through it. My wife and I were married 2 years prior to my diagnosis and it deepened our relationship and fine tuned what is really important in our lives. There were many gifts as a result of this disease, although some took their damn sweet time coming.

Danny Boy is a master at putting on pounds with PEG feedings - I am sure that he will share this with you. Get as much weight back on as soon as you can. The body needs all the fuel it can get for fighting and healing.

The trick to it is stay in the "now" and not the future - you must take it one day at a time. Start putting on the negativity filter in your brain and block those comments out. Counseling my be very useful right now as well. There are local caregiver support groups that can help you as well, talk to your hospital social worker.

Thanks Gary

I finally decided to block out everything that is not helpful and useful in our lives right now. Caller ID is great.

We have been married for 12 yrs and this truly tests your relationship. It sure makes your bond stronger and you appreciate each other more.

I know that we will get through this, there is light at the end of the tunnel. I know I constantly nag him with encouragement and he thinks I'm crazy but I cannot afford to give in to this. The minute I give up, its over. I have been very successful at not letting him see me crying or melting down. That is the last thing he needs.

We watched the Lance Armstrong documentary on Discovery channel last night and it helped our morale.

Today is looking like a good day already. Thanks Gary. I will need to get some info from Danny Boy

Cinch up your saddle and hold on! Radiation is a real bear. I was pretty hard on my wife who was a perfect caregiver and one of the sweetest people on earth. You will need support too. Being a caregiver is much harder than being a patient. The thing is, is that HE can't give up on this. Cheerleading can only take it so far. This is why other interventions, medications and support are necessary (and we are always here as well). It can be a wild ride.

Get the Armstrong books through the OCF Amazon link (when you first open the forum page) and a small portion is given back to OCF.
"It's Not About The Bike" was the first book he wrote.

Oh yeah, I've heard about that. That is the one I'm not looking forward to. Our oncologist warned me that he will turn into a grizzly bear. I'm ok with that as I don't think he's had an opportunity to vent and let it all out. That may be a good thing for HIM. I think i can handle it but only because I know that it will make things better on the long run.

I was also warned that he might want to give up half way through the treatment. I've already warned him that if we start the treatment, we finish the treatment even if that means I have to tide his butt to the car seat and drag his butt to the hospital.

This site has provided me with so much information and support. I'm ready Gary.

So I guess in our situation things will get twice as ugly since he will be doing chemo and radiation at the same time, huh?

So be it, bring it on. We are SO ready to get this over with.

You are great Gary and your wife is a strong person but her love for you is even stronger.

Lily

Caretakers have a tough road along with the patient on this disease. When I was first diagnosed my husband and I cried together but he told me I had to make the decisions on what I wanted to do. We did discuss doing the radiation with the chemo and that we needed help. My mom was called and she took 3 months of work to help take care of me.

She was there all the time and we had some trying times my mom and I. (Now for some reason she is not talking to me but my sister insists it is not me it is just her.) She didn't agree with the surgery and begged me not to do it. She made a lot of decisions on my care during the treatment. She left after the radiation and chemo treatments ended. I was left at home by myself to deal with what I was going through.

My husband lost my help during my tratment time running our business and was putting in long hours. He sometimes wouldn't come home because he had so much to do. When I went to the doctors after my mom left he would go with me and the topic of having surgery would come up with the doctors. They didn't really pressure they just felt that I needed to fight it with all I had.

I finally told my husband that we really needed to discuss the surgery together. When we got married we became one and that we should make major decisons together. He agreed and we both decided that it would be best to have surgery. It was scary and upsetting. We got everything in order or wills and everything else. This is something that we needed to do anyway and it forced us to get it done.

We have been through a lot with each other and family members through our marraige and we know that we will be there for each other.

It sounds like you will be there for him and getting prepared for what lies ahead. Remember this forum as things get tough as I read other caretakers posts that it is not easy.

Take care and you and your husband are in my prayers
Love
Terry