Cancer Survivors Network - Well meaning friends and family - Comments

You never know...

lily33 — Tue, 07 Jul 2009 12:46:10 -0400

When my husband started his battle with kidney cancer 5 years ago everyone was shocked. He was young, healthy, and symptom free. We had many friends and family that I assumed would rally behind us. What we experienced was much different. Many of our friends could not handle the news. I think it forced them to look at their own mortality and it was too much for them. Even some family members abandoned us...never a word, e-mail, or card sent in our direction offering prayers or comfort.

I was angry for a long time. I didn't understand how family...such as his brothers...could act as if life remained the same. I was angry that my best friend talked about my husband's cancer as if it were a cold.

Then I realized what cancer gave me...I've become closer to some of our friends like I never imagined. Family and friends that I NEVER thought would step-up have been supportive beyond words. During tough times you find out quick who your real friends are. The exceptional people I have met on this horrible journey will be my friends forever. They have and continue to support me physically and emotional. Focus on the wonderful people in your life. Your energy is not worth the others.

lily33

well meaning friends and family

seanslove — Tue, 07 Jul 2009 06:49:04 -0400

As many others have long ago stated every one tells you what you should or shouldn't do,but being a psych major,I know every one is different,therefore,every one does and feels a different way. I am so tired from his friends and family members,who we haven't seen or heard from in five years calling and showing up. If these people loved him so much,then where have they been up until now?
They do not understand why he does not want to see them,and being the good wife,I just keep saying he's either asleep or doesn't feel well today. The stress can be so overhwelming when your trying to be nice and deal all at the same time. But,this is his cacner and his fight,therefore,in my mind the rest do not matter,and I have vowed to allow him to do as he pleases,reguardless of the others.

Angry at God

pkl54 — Wed, 01 Jul 2009 22:09:34 -0400

HI, I just read alot of you postings, from when your husband was alive. I am sorry to hear he didn't make it. You sound like alot of the people I know, your farm and the life it offers is hard. I don't know how you have done it without your partner. Your postings have helped me as my Sam just was diag. with lung and liver cancer but we aren't sched. for the oncologis till 7/6/09. We were doing ok till the liver cells showed up. He is very angry and frustrated. He is thinking- but not really believing that all these Drs. are just doing all these test, getting money, and all he is getting is scared and angry. So your anger made we take notice. He is already there, but not at God yet.
I also was helped by the "brother positive". I am Pattie Positive and God has been helping me hold my tongue during this, somewhat. I was also helped by the responses of others to what you wrote. I am going to be hearing these things and having to respond, so I am going to try and handle the positive commments and the no comments in light of what I read. My husband was diag. during pre-testing for hip replacement surgery. SOMEDAY, I pray we are going to see that finding this out now WAS a blessing, as it was an early diag. BUT I only think it now, as speaking it often would not be helpful!!
Again thanks for venting on here. It was helpful. God Bless you and help your healing.
Pattie

Family Update

longingforhope — Tue, 30 Jun 2009 13:21:39 -0400

My daughter is finally feeling better after 3 ct scans and 3 chest x-rays rounds of visits to different specialists including the last one to the Pulmonologist at Cleveland Clinic. The verdict varies but the things we know for sure is that her thymus is growing into ther lungs but is not cancerous, she has nodules on her thyroid that they will contine to monitor and her cough of 9 months finally went away. Oh and lets don't forget the atypical moles she had and the mri showed no cancer or spreading but she will be watched for melanoma now. The poor kid is 18 and just moved to South Carolina,she starts College in Aug and really didn't need all of this.

Hub's scan showed no evidence of disease but they made sure we knew it can return any day. They are so uplifting! He is continuing Interferon shots 3 times a week, I have gotten quite good at them, until November.

We have moved to Florida and the weather and sunshine agree with us. Even our pets love it. My 15 yr old is going to do online high school and start at the community college this fall.

Life is different but better in many ways and we can actually think about something besides cancer now. I believe God made the ocean so we would feel close to him during the rough times.

Hope all of you are doing well. You are in my prayers.

Hope

: )

longingforhope — Tue, 30 Jun 2009 13:10:44 -0400

Thanks Joe glad you agree with me. Come back to the chatroom we miss you. Fix your Java!

Hope

Another friend Great!

longingforhope — Tue, 30 Jun 2009 13:09:10 -0400

Thanks for adding me, now we can send private e-mails too. That's what adding a friend entitles you too.

I do try to be positive and I think you and I do have alot in common. Some days are just dark and I have to vent and my family and few friends that have stuck by me get tired of hearing it so I come to my online family for an ear and support.

At diagnosis we should be given this website in our cancer handbook they give us. This truly is a lifesaver.

Come and chat with us soon there are some new men recently dx that could use some positive male influence.

Keep the faith

Hope

Therapy Here Too

longingforhope — Tue, 30 Jun 2009 13:05:09 -0400

I have been in therapy for two years, long before hub's dx. It's called teenagers, lol. They are good girls but with three sets of hormones comes three sets of problems. My poor hub, I often wonder if the stress brought on the cancer. Oh and maybe because he was a kid with bright red hair and fair skin and like myself was a sunworshipper.

I love my therapist, she is very calm and understanding and helps me deal with being 45 with 2 teens and a sick spouse.

Good for you to seek help, you will never regret it.

Keep the faith

Hope

I hear ya!

Derrick — Tue, 23 Jun 2009 00:04:14 -0400

Hi,
I can certainly relate to you. I have stage 3A Melanoma but most of my friends think thats jus like a cavity or something u cut out and your ok. I wish. Wish people get the facts. Melanoma is one of the deadliest cancers and even stage 1 is dangerous. hard to cath it early when a mole you had all your life is looking like a typical mole! Then it goes bazarck and time the docs get you to surgery its spread! Then people are like didnt u watch yourself? Did you get too much sun? You gotta wear sunscreen...blahblah blah, I did all that I never got much sun less than most my friends,...and so on ...anyhow there are so many things that might cause a particular cancer, yet many think u got it the most common way, which even is not proven 100%, I was on immuno pills for Crohns I got too and I blame that. Anyhow too many people do say ...ahhhh youll be fine its just skin cancer! Give me a break. I hope I will be fine. I know people try to put a good spin on things....what are they to say ...boy you'll be dead in a year or so....lol but people need to get facts and stick with facts.....I think one should say or acknowledge atleast that you have something that is dangerous and tell you they hope all the best for you. Just try to help you out, actions will show a lot. Its hard I know for all involved. Not easy. It's not good though to belittle a serious disease or to tell someone they have false hope or that they have no hope. So take a middle ground. In fact thats what most of us have. A middle ground, a chance to get better but also a chance to not do so. Yes people are better and some worst off than others but that dont mean anything to the specific situation really. Its like a family income, so many make $50000 some more, some only 10000 and so forth, for sure it is hard to live on 20000 and to say some are only making 10000 or are on welfare doesnt help you at 20000 if you cant hardly pay bills, etc...Its better to acknowledge that all these groups of less fortunate people need help. It is unlucky to be sick or get cancer I think. Sometimes lifestyle may increase your risk but many times a lifestyle is pre determined by other conditions , other sickness, family history, job, education and so forth that may be beyond our control. Yes if you smoke all your life that may give you cancer, but even still one cant be certain 100% that caused it. I know smokers who lived to 90+ Yet smoking will increase your risk a lot, so dont do it. Dont get too much sun, etc....but you kinda got to take meds for Crohns disease say for example, that may lead to more side effects. So sickness in my opinion is largely a matter of bad luck, once you ensure you did everythin else right: diet, exercise, etc, to the best you can with your education, and so forth. I read in the New Testament that when we are sick we can be closer to God, and many will call on God when and sadly only when we are sick. Yet God will answer. The meak shall inherit the earth and we must all come to God as a child. We must be humble, and believe totally in your own mind and heart that God is real, then pray and ask him for what you want with no greed or evil at all in your request. I believe in God and I think God still heals today just like he did just 2000 yrs ago which isnt a long time ago. Even if we are not healed it don't mean we are considered less worthy than those that do get healed of cancer. God healed back 2000 yrs ago only some, some to show his power and compassion and to help spread the faith. To God the body is a mere shelter of the soul while we are on Earth. Our soul is just as precious to God as that of anyone healed by God or that of those who are never sick and sail through life. God loves us all. The shorty second of a lifetime, is so small compared with eternity of life for our soul, that we can see how the soul is the crucial thing and important to God, not our body. Even when Jesus 'died' on the cross and he shouted and gave up the ghost and his head fell down, his body stayed there on the cross, yet God left the cross and the death, God is everywhere and in all of us and it is our soul, and our soul too will leave and go to Heaven with God. Therefore any physical pain or infliction on Earth will draw us closer to God and in prayer and reading. I dont blame God for all my sickness, it is just the way things went, I thank God for our chance at everlasting life and the short gifts on Earth that can even create memories that last until the end in our families and friends. Just as not a single sparrow will die on Earth without God knowing, then how much greater are we than a sparrow? Im paraphrasing the bible here. God left the Earth in a sense back 2000 yrs ago but we were told, the apostles and others that we are not left hopeless, we are left with love, and best of all the hope at everlasting life. A way to beat the end of life on Earth, a way to live again. Certainly thse things are within God's power as he is the creator the engineer of it all. Even science is pointing more towards a supreme power and devine creator. Even nature and its patterns and mathematical formulation and following of a formula points to a creator more than just a random event of a big bang. The organization of life contradicts the law of entropy and chaos. as if everything were to get more disorganised and tend to clutter and random then how would something of such order and design and life have formed....well I tell you how, by the power of a creator, God.
God Speed.

Test results, other results

gthufford — Sat, 13 Jun 2009 09:24:18 -0400

Longingforhope,

Just thinking about you and the test results and the other news you were expecting. I hope and pray that all is good with you, and hope you are having a wonderful time in FL.

BTW - I looked you up and made you a friend of mine on this website. Not sure what that means, but we could all use another friend!

Wow! Is this ever true! My

coachL — Wed, 10 Jun 2009 22:59:56 -0400

Wow! Is this ever true! My husband has a stage 4 tongue based cancer and EVERYONE was with us for the first month or so. Now the group has dwindled to a small number. I feel pressured to relay "good news" and sense their "tiredness" with our continual struggles with chemo and radiation. In some respects, I guess we are seeing who are truest of friends are. I too am not bitter, just learning so much about myself and others.

No

soccerfreaks — Wed, 10 Jun 2009 07:36:20 -0400

No, for sure, it is not a simple process. Hopefully, speaking to a professional about it on a regular basis will help you sort things out and begin to shed some of the worst aspects of the experience, especially the anger, and move forward toward a healthier, happier life.

My best wishes for success!

Take care,

Joe

farming

nofarm — Tue, 09 Jun 2009 20:35:11 -0400

Knowing how farms work, I can imagine how hard your financial struggle is. Unlike some other jobs, not just anyone can fill in and the investment is at stake every day. Spend as much time with your husband as you can....the bills (medical ones anyway) can wait. Believe me, they will keep after you so why hurry. ha!

We had the wrong insurance and had to sell farm ground...but had I known, would have borrowed against the land instead. Unlike some other professions, your assets keep you "in their sights" so eventually you have to pay rather than declare bankruptcy as some wage earners do, but negotiate, negotiate, negotiate. Your insurance company will get a 50% write off, so don't feel grateful if you are offered 30% for paying immediately. Go for the best.

My husbands war is over, your husband's is not. My best wishes to you and on a positive note, keep peddling.

Anger

nofarm — Tue, 09 Jun 2009 20:24:45 -0400

LH.

As I told Joe in his post, yesterday I opted to get help. I've tried for two years now to run away from all the anger and it just hasn't gone away. Hopefully, I can work through it and find some peace. I for one, and others on this post do understand where you are coming from. After my husband died, my brother began to understand better, but never completely. I don't think he actually believed Burge would die.

May your family get through this and avoid some of the anger I did. I have no answers for you, only prayers... I can actually say and mean that now. I'm still angry with God, but realize that he is here, quietly giving direction, as I believe he has finally put me in contact with a therapist who can help.

nofarm

anger

nofarm — Tue, 09 Jun 2009 20:09:08 -0400

Joe: You have no idea what Two years of anger can do and yes, I have sort therapy, yesterday in fact. In that two years, I continued to lose things, pets, family dynamics, financial security and four months ago, my Mother. Although I agree the Cancer is still the main problem, it's not a simple process.

Thanks for you post.

nofarm

What to SAY!

cowman — Sun, 07 Jun 2009 20:14:45 -0400

Nofarm,

Having just crossed over into "cancer-world" in May 2009 (spouse colon cancer), I can realize I was guilty at times of saying "the wrong things". We don't know that 20 other people are repeating the same "positive story", etc. My husband also farms and it IS a struggle as any self-employed person can tell you. There is no sick leave. I am just blessed that I DO have family leave at my work and can be there for him.

I am so sorry that your husband has died and that you are still hurting. I will keep you in my prayers.

Well meaning friends and family

nofarm — Sun, 21 Aug 2005 23:08:08 -0400

Just for tonight, I'm going to be an ungreatful sister. Everytime my brother calls to see how my husband, 49, with side effects from colon cancer, chemo side effects and surgery screw-ups, (36 day hospital stay because of a leak and now scar tissue) is doing, he gives us a "positive attitude" speech if we tell him anything other than "it going great!"

Tonight I had to hear how greatful we should be that routine blood tests came back OK, especially when I expressed how those tests had little to do with the current neuropathy in my husband's feet and how discouraged he was.

I get "the lecture" any time I talk about the "real world" of cancer, the bills, our farm problems with the primary breadwinner sick, or anything else that is actually happening.

Don't people realize that there are times when we (caregivers and patients a like) don't want to hear how "thankful" we should be? Of course I'm glad my husband is still alive...dah! Of Course there are people who are worse off!...but not my brother at this point in time. I often tell him that pointing out to the man who just lost both arms that he is luckier than the man who lost both arms and a leg, doesn't do much to help the first poor guy.

My husband is angry at God right now, doing the best he can to cope with losing his past life style and scared to death. We know all about a "postive attitude" and try the best we can to keep one, but people who aren't living a major disease haven't a clue!

Does anyone else feel this way? What can I say to my brother to get the point across that we are not actors in a TV movie....positve attitude or not, things aren't going so good right now and I really don't want to hear about how fortunate I am. I realize that my brother is just trying to be nice and I'm glad he cares, but HE needs to get real sometimes. I know if the tables were turned, he would be the most depressed person in the world and the "positive attitude" speech would just make him mad...just like it does me.

Thanks for listening!