Let it out!! No judgement zone.

[Denzie]

There are so many things that suck about cancer. From scanxiety to well meaning people who want you to know that if you eat a pound of (name it) daily you will cure your cancer. If you got a flat tire and want to blow off steam this thread us about letting it out. Judgmental responses will be deleted.

[Denzie Moderator Volunteer]

Recently I got into a debate with a woman who has a Doctorate of Fine Arts (DFA) about the causes of cancer and treatment. This person likes to be addressed as Doctor.

According to this DFA/PhD we get Cancer from wrong thinking and all we have to do to heal (cure) our bodies of cancer is to correct our thinking and align it with that of their Creator. I challenged her on that as I’ve met many devout Christians, Jews and Muslims who’ve developed cancers. When I asked her which religion was the right path she stated “the one you’re on”.

When I asked how her theory explained why babies can be born with cancer her response was that the parents harbored negative thoughts while the baby was in utero. Either that or it was punishment for transgressions in a previous life. For example she said that the baby might have been a guard at Treblinka or Auschwitz.

I’ve no idea why my sister-in-law, mother of a child with Aspergers would become a devotee of this crack pot. But when this woman sends out a ‘Reflection’ my sil shares the wisdom with me and about 40 other people.

I’ve blocked her emails now but I am genuinely concerned that this woman has so many followers.

So that’s what’s got my dander up lately. What’s bothering you?

[FtB_Peggy in reply to Denzie]

Wow, Denzie! Well you struck a nerve here! I so understand. I have been a nurse for over 40 years, for most of that time I had the privilege of caring for people at the end of life. Here is what I learned. Disease strikes anyone, it is random. I can say with confidence that disease doesn't care how good a person is, or how they think. Please, spare me. What anyone with any disease needs is love and support. Period. Hugs to everyone, and let's just be kind.

[Denzie Moderator Volunteer in reply to FtB_Peggy]

Thanks, Peggy. Telling people that all they need to to to heal themselves is “__________” blames the patient for the disease whatever it is. Patients who are surrounded with love and support survive much better. Guilt serves no purpose

[JeanE41 in reply to Denzie]

Absolutely right!!!!!!!

[Tammy2262 in reply to FtB_Peggy]

Hi Peggy,

My dad is on hospice with stage 4 small cell that has metastasized to his liver, brain, stomach and renal glands. He hasn’t had ANY pain thus far, and wants so badly to get out and enjoy the time he has left. However, he is weak. Is there something he can do to build his strength ?

Thanks,

Tammy

[Denzie Moderator Volunteer in reply to Tammy2262]

He needs to take in as many calories as he can. Has he had any occupational therapy? How to get in and out of bed or chairs in a manner that preserves energy? Use a wheelchair whenever you have to go somewhere. Don’t insist that he showers or bathes every day. It’s an exhausting activity. Plan lots of breaks.

I’m hoping Peggy has more to recommend.

[Tammy2262 in reply to Denzie]

Thank You So Much !!

[FtB_Peggy in reply to Tammy2262]

Tammy,

Denzie had great suggestions. Timing is a big part of it, he should get out at his "peak" time of day, when he is most rested. Plan short outings that aren't too demanding: a ride in the car; a short lunch; if he is okay sitting up for awhile, maybe a movie. To build strength, again Denzie has it - high calorie, protein rich foods or drinks taken in little amounts throughout the day so it is easy for him to take; keep him hydrated, so again, sipping small amounts often. He can rest before and just after an outing. Keep expectations realistic, so you can succeed! Does he like to watch movies at home? Maybe you could plan some fun activities where he doesn't have to go out, plan a movie party or a game party? I once cared for a dear woman who loved Christmas and loved trimming her tree more than anything. So I got her on the couch by her tree and every 10 minutes she would get up and hang an ornament. She eventually got that whole tree trimmed herself. It meant a lot to her, and to me.

Bless you for caring so much for him and for making this time be a time he enjoys. Keep loving each other!

Hugs,

Peggy

[JeanE41 in reply to Denzie]

This is a good example of how little academia teaches about real life. It is scary that someone so ignorant of this subject has so many followers. Those of us who are living this journey have every right to be outraged. Thank you for bringing to light such ignorant nonsense. Like Peggy, I was an RN, now retired. If bad thoughts were the cause of illnesses, then many more of the bad people in this world would be the ones afflicted. I would love to meet someone who has never had a bad or mean thought outside a cloistered religious community and even they get sick.

Too bad this "doctor" doesn't stick to her own field and leave medical and ethical issues to those in the know.

[Denzie Moderator Volunteer in reply to JeanE41]

I do agree. Critical thinking and critical reasoning skills are no longer taught. Too many people have forgotten how to apply scientific method.

[Davidatp]

I am a Stage IIIb Lung Cancer (NSCLC) survivor and I agree with all who disagree with the DFA type reasoning. I am still alive after 9years because I went to one of the best cancer centers in the world (Moffitt Cancer Center), quit smoking. had a good attitude about doing what the Doctors told me to do, and had God on my side. The witches brew cures may actually be good for you in some cases, but they won’t cure cancer. Good luck, God bless and keep the faith.

David

[Denzie Moderator Volunteer in reply to Davidatp]

Congratulations, David! 9 years and counting is great. May you continue many more. It’s important to have a care team that you trust and it sounds like you have a good one. Keep advocating and caring for yourself the way you have been.

[anrean]

Three pet peeves - first is always being asked if I smoked - I'm sure that 5 primary cancers are not related to it, and most of my generation smoked anyway! No one asked that when I went through the first 4 cancers!!

Second pet peeve right now is the boring black bags that they give for carrying an O2 tank. I now use a Vera Bradley bag for the small tanks and a friend is making a colorful bag for the bigger tanks. Oh, and do you really think I would haul these things around if I didn't need them!

Third is docs who don't listen to their patients! As most of you know I had to go for a 2nd opinion to get the info I want! Tell me the truth, the whole truth and nothing but the truth!! I don't want it sugar coated and made that very clear from the beginning!!

[JeanE41 in reply to anrean]

Did you ever get the info from your second opinion doc? If so, what did she say?

[Denzie Moderator Volunteer in reply to anrean]

Ditto on the stigma! There are 31 cancers that have tobacco as a risk factor. More on that later.

My cousin/housemate uses a backpack in a subtle flower pattern.

Docs who don’t listen? It’s recommended that you change doctors every few years because after a couple years they have their minds made up about why your there. My mom made an appointment to see her doctor and was pawned off on the Nurse Practitioner. When she told the NP she thought she had a brain tumor she was told she would know if she had one. She was given an Rx for a sinus spray and sent home. The next day she went to Urgent Care. The dr listened to her, had her try to do one motor skill test. Within 2 minutes of describing her problem he diagnosed her with a brain tumor. There were 3 of them and it turned out to be lung adenocarcinoma. BTW, her sinuses were clear.

But 5 cancers? You deserve a break.

[ThePurplePlace]

Great Post!!

Denzie -- I'm with you and totally agree! It drives me crazy when I read or someone shares an article or "ad" about some "Miracle Cure"! Or those who insist that a special diet, or apricot seeds, or one of a hundred other "unproven" things is all we need to cure our cancer? Ya Right! I wish it was that easy! IF, there truly was a this wonderful "Miracle Cure", then we'd ALL be cured -- we would not be here posting -- UGH! Drives me crazy and upsets me when I see "new" patients/caregivers who are eager to jump at any possible cure or fall victim to the many scams out there. Shame on people who pass along "fake and false" hope....

Greatest pet peeve is the "smoking" question -- Yes, I was a former smoker and yes I did quit several years ago, but now I have Stage IV NCSLC Adeno. It is from smoking -- probably/maybe? No one knows for certain, even my Onc can't say for sure, but I'll always be part of the stigma. And, sadly there will always be those who look at me, as if I deserve this? Or as if it's all my fault because I made a huge and foolish mistake as a young teen? Back at a time when it was common place for smoke - a time when you could smoke any where and every where and we did. Everyone I knew smoked during that time - my parents, friends and schoolmates? There were no age limits, cigarettes were cheap and could be bought by anyone. We smoked in businesses, stores and restaurants -- even hospitals -- doctors smoked too? It was heavily advertised and actors and newscasters smoked on TV and in the movies---it was very much a way of life.

By the time we all realized the true dangers we were all highly addicted to Nicotine -- and I blame the tobacco companies for that. The new ads they've been forced to 'air' prove that they wanted us all addicted and that they designed cigarettes to make sure were addicted !! to cigarettes to be sure we were. If you have not seen the ads, you can read about them and see some of the clips here -- nbcnews.com/health/health-n...

Of course, I wish I had never smoked, but I can't go back and change time. I'm lucky that I finally beat the addiction, it was one of the greatest accomplishments in my life! Bad choice, you bet -- but I'll never accept the full blame or ever feel like I somehow deserve this!

[Denzie Moderator Volunteer in reply to ThePurplePlace]

The stigma is the worst. Smoker or not, no one deserves Cancer. Doing some research for another project I found 2 articles published by NCI that indicate that tobacco is a factor in breast cancer as well. In a Facebook thread last November several people mentioned an article that connects tobacco with 31 cancers in the New England Journal of Medicine. I couldn’t find the article so I’m locating all 31 another way. When I finish the project I will put it on my blog and supply a link

I remember going for annual school physicals with my sibs. When the dr was done he would meet with us all in his office to discuss the outcome. I remember him offering my mom a cigarette and lighting it for her. The only place you couldn’t smoke in hospitals was rooms where patients were using oxygen. People smoked in churches. Doctors endorsed cigarette brands.

I tried everything to quit. It got to the point where I told my family I needed a Betty Ford program for tobacco. I believed that I needed a month in a hospital to quit. That’s just about what it took. I was diagnosed with a large suspicious mass, put in the hospital for a week with tubes and things sticking out of me. There was no was to get away to have a smoke. Finally, I was done.

Thank you for such an amazing response.

[ThePurplePlace in reply to Denzie]

Thanks Denzie -

I will look forward to reading that post when you have your research done.

NOTE: Clearly I should have proof read my post better before I hit reply -- I was so angry in my "rant" that I made some typos. OOPS!! I am glad you understand and share my feelings on this. The Stigma hurts us all...and that's what is most upsetting.

I honestly do not believe there is a person alive who would not quit smoking immediately IF they could easily do so. Some say nicotine is even more addictive than heroin? Scary!!

Now seeing those new ads on TV where the courts have "forced" the tobacco companies to "tell the truth" makes me more even more mad. To know they did this all on purpose to be sure we all were addicted is sickening and WHY they are still allowed to be able to do so, baffles me? During my pursuit to quit, I switched to lights and then ultra lights, thinking" that IF I could not beat it, at least I was getting less nicotine and tar and hopefully doing less potential damage? -- WRONG !!-- They played us on that too!

PS: Thanks for starting this post--- I'll never deny that I was a former smoker when asked, but sometimes I hate to admit it because of the stigma and I truly HOPE someday that will go away...!!

~ Lisa

[Spainy]

The stigma, it’s just a show stopper. There’s a woman who blogs about it in a Facebook page, “Every breath I take”. She says the stigma harms all lung cancer patients. The public is so tuned in to all the propaganda they have no idea that anyone, young or old, smoker or not gets lung cancer and dies. I was a smoker and after they found a nodule by accident, my URL removed. None of my friends who smoke will get a scan and get checked out. It should be required!

[Denzie Moderator Volunteer in reply to Spainy]

I adore Lisa Goldman and her blog. She champions all survivors and can be counted on to support whoever reaches out to her. We met a couple years ago at an educational conference and I hope to meet her again. Seems I’ve replaced my rock stars with advocates or advocates are my new rock stars.

[Jenniferroseolson]

The stigma is a very real reason that lung cancer is the deadliest cancer...imagine if the resources for research were prioritized according to fatality rates instead of public perception! Body fat is a major risk factor for many kinds of breast cancer...so the same people who ask if you smoked ask breast cancer patients if they have tried to lose weight or how long they have been overweight?!Can you imagine that kind of insensitivity?! ANYone can develop cancer regardless of lifestyle choices.

[Denzie Moderator Volunteer in reply to Jenniferroseolson]

Right? Breast cancer patients have research funds spent 14-1. It verges on criminal.