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Telling Others

Rocquie's picture
Rocquie
Posts: 831
Joined: Mar 2013

When I was first diagnosed with cancer, almost 4 years ago, one of my first thoughts was that I didn't want to tell anyone.  When my Doctor told me I would be losing my hair, I felt so sad, not because of vanity, but rather of being transformed into someone who must reveal to the world, through baldness, that they have cancer.  I didn't necessarily want my bank teller, librarian, or grocery store cashier to know this about me.

I knew I would have to tell my employer. I had already missed hours of work for medical appointments. My co-workers had watched me becoming sicker, thinner, and weaker.

My husband convinced me to tell my parents so I made the dreaded phone call. My mother began to wail. And I do mean wail. And cry and sob. I was very sick at the time, not even fully diagnosed and I sure didn't want to make anyone feel like that.

I didn't need to tell anyone else, mother took care of it. I started getting phone calls and cards. I wondered, how much weeping must a sick person endure?

I came to realize people were crying and upset for themselves. "Poor me, my daughter has cancer". "Poor me, my mother has cancer". "Poor me, my sister has cancer". "Poor me, my friend has cancer".

As the weeks went on, the notes, cards, and calls stopped. Never, not one time did anyone offer to help us--no meals, no offers of rides to medical appointments, no mention of chores. A few times, I even asked when I got those "if there is anything I can do" comments. And of course, I got the quickly moving to the next aisle in the store,  pretending not to see me.

What is so painful (and ironic)  about this is that I have always been one to "do" for others--cooking, hospital visits, prayers, cheerleader, help with children, rides, laundry, personal care--baths, shampoo, nails, back rubs, errands, shopping, help sorting out bills.

When we recently learned the lymphoma is coming back, I told my husband I wasn't telling anyone.  This time, he agreed. 

Blessings,

Rocquie

 

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

I had the same thing with the cards and gifts. My parents are gone but my husband's immediate family was the ones doing the wailing and "it's not fair" stuff. Fortunately they live in another state. There will always be people who offer to help because that is what people do. But when asked they find reasons they can't. What I did for everyone when they offered help was to tell them to pray for me and the medical teams that we get this cancer into remission. I found there were friends and some family members (mine & my husband's) who kept in touch via emails or phone calls. And the others, when I do see or talk to them they say they are still praying for me. 

With your experience I can undersstand why you don't want to tell them it's back. I hoep it can be put back into remission quickly. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Rocquie,

There are some positives to not telling but perhaps you could tell a few trusted loyal souls???  

I have been to hell and back, discovered that Hell has MANY levels.  Went down this road and back again.  Regrettably I'm still on the same path.   I did not tell my family I have cancer.  Today they still don't know a thing.  It's so difficult!  Everyday stuff is tricky, especially when you don't feel well and have mountains to climb.

My father was diagnosised three weeks after I was.  I put my treatment on hold so I could be with him and support my mother.  I watched him almost die after his first treatment.  Then I started my treatment alone while he was in the intensive care cardiac ICU.

I had two friends.  Priceless and they were my emotional support ARMY.  It's not quantity but quality of those you may choose To share your journey with.

BTW I'm sorry for your experience, I'm just playing Devils Advocate.  For me sometimes hiding it was harder than having cancer.

I'm like you, always there for others.

There are those who run into a fire to help and there are those whose run like hell to get away from the heat.

I recently lost my father.  Two months later my grandmother became ill, I urged family members to step up.  I did not want my mother to take on the caregiver role.  They didn't.  My grandmother moved into her home.  I went to doctor visits, meetings, organized hospice etc...  From a distance I was mortified how little her own children did.  I simply continued to do more.  The last three weeks became tricky, I became ill.  Next thing you know I have all kinds of appointments, surgery and tests and can't see her..... but still did (thankfully [she passed away this week].

Then I had to do much of her funeral planning, out of great weakness I lost it one day and texted my best friend that it would be a miracle if I didn't relaps because of the stress and nonsense of others.....  

No matter what you choose to do, I hope you have a few who will move mountains for you.  

You always have this group who "Knows" and are here for you.

Blessings!

 

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

You have been thru hell, and i totally get the reason why you didnt let family know, i did the same in the beginning, i let a few close ppl know who are friends and not family, but might as well be. I am so sorry for your loss, be good to yourself, and my hats off to you, hang in there.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

your words mean more than you could ever know.  Same to you, let's have a great weekend!

Good luck with the PET scan.  I prayed a big prayer for you today and will continue to do so. Wishing you all the happiness and health.

Keep us posted!

Francyn's picture
Francyn
Posts: 10
Joined: May 2016

I'm faced with the same dilemma. I am waiting (and waiting and waiting) for the official diagnosis and at that point we'll tell more people. But I have always been a person that is too open. Not sure why I do it, but I end up telling strangers stuff about me, good or bad. Don't know if I am looking for attention or what. I feel guilty when I open up to people and not sure why I do, but I have always been that way. Diarrhea of the mouth! Before I know it, I've told the person behind me at the grocery store all about my son's challenges with school, my show dog, everything. I did tell my neighbor who asked what can she do. I told her that when I get the diagnosis and start treatment, a meal brigade from the neighbors would be a great help. Before I moved, I was part of a group that would often plan meals for anyone struggling. It was a big help. If someone asks what they can do, don't hesitate to tell them. "A simple meal would be a great help." She (the neighbor) brought over a lasagna and it was wonderful to not have to worry about cooking the day after my surgery. Good luck and well wishes to you and all of us.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Roc,

On this second go-round, you have the benefit of hindsight, and are better placed than most to decide what and how to share your medical situation.  Whatever you decide is right for you, and very sound.  My wife is exactly like you when it comes to revealing sickness; she would not even let us tell anyone that we were pregnant for a few months.  You should see some of what is discussed at the prostate cancer board:  TMI !   It is graphic, of necessity.   The problems are graphic, so the sharing cannot be prudish.

I did not discern that people's reactions to my disease were selfish in the manner you described.  My family and church community seemed genuinely concerned, and were actively charitable.  A friend from work came over in the middle of my treatment and noticed that my pickup needed tires, and insisted that he buy me a new set !  I did not let him, but he was insistent for quite a while.  Many other people did real acts of kindness.  A best friend offered to drive me to and from infusion. A few years later, after his prostate cancer relapsed, I was driving him to infusions and the oncologist. I was with him in hospice the day before he died. Two years later, I had my prostate removed.  So odd, how this stuff goes round and round.

I have always felt that my disease was objectively harder and more stressful for my wife than for me. I basically just had to "lie there and take it," while she was busy with everything -- because I could do nothing.  I was unable to be the superman patient, I just was not able to do it, spending most of my months in bed. Not by choice, but of necessity.

You deserve to be hurt, mad as hell, anything whatsoever.  As I noted, you are already way ahead in understanding the cancer experience.  All of your decisions will be the right decisions, and if they evolve or change over time, that will be right also.

Despite so much 'cancer ignorance' in the world, you know that we are here listening and (mostly) understanding,

max

Let us come along/

Cause even if your wrong/

We'll stand by you.....     https://www.youtube.com/watch?v=maAyfcO-X3k

 

.

KarenSMZL
Posts: 16
Joined: May 2016

I have only been diagnosed since April 27.  I did tell my employer for obvious reasons.  My boss asked me this week if he could tell the board of directors that I had cancer, just in case they may wonder why I was losing my hair.  Wow, that was an exemplary show of support.  I did let him know that I would be the one to tell them.  I too have asked people to pray for me when they ask if they can do anything.  I know there are people who would drop everything to help me and others who would run away.  All of us have to deal with the hand we have been given in the way that is best for us and our loved ones..

hopeful lady
Posts: 36
Joined: Apr 2016

I get that question a lot......my sincere answer to each and every one is to go enjoy your life, live to the fullest, take nothing for granted, and enjoy the sunshine!

If they do that, they have helped me!  It makes them think!  That being said, I have wonderful family and friends who have been there 24/7 to cook, clean, run errands, take me shopping, etc.  They have all gotten through the "can we talk about the big C word with you". Now they are endoctrinated enough to ask questions like how's your counts today or did you barf yesterday or are you still constipated. 

 

 

To tell or not to tell, our choice still in a world filled with things already chosen for us!  Feels good to have a little control over that.

You guys are all true warriors and I so enjoy being here with you.  I feel like I could discuss anything and you guys would chime right in (after all, we discuss constipation and diarrhea)!  LOL!

Some days are better than others... I just hope the very best for all of us and that we continue to stand together to fight this disease!

Thank you all for sharing!  Makes my day!

 

Dianne

 

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

Roc,

I'm sorry for the response you received. I had some like that and others that were there for me. What you have done is great and don't let others change your ways. People, including myself, are just too busy with all the crazy stuff this world offers. I wish things were simpler. I'm trying to make my life simple. Hang in there!! You will change people's lives. Just reading your string got me to reach out to someone I know that has cancer to see if they need help.

Jeff

illead's picture
illead
Posts: 837
Joined: Aug 2012

Your post made me sad and sorry I haven't written.  At least you have us, a motley group LaughingWinkUndecided.  I think what Jeff just said is one the greatest compliments anyone can receive, I sure hope it made you feel better and to believe you are very important to all of us.

Love, Becky

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

Personally, I’m  more like Francyn in “telling people”.  I’ve been wearing a mask whenever I’m out in public and when folks look at me curiously I point to the mask and say “going through chemo and shortly a stem cell transplant”.  If somebody asks me how I’m doing – I take a minute to tell them how doggone good I feel and how active I’ve been able to stay.  Max used the term 'cancer ignorance' and I sorta’ feel that anything I can do to make it less scary, less ostracizing, less ‘verboten to talk about” the better.  How fortunate that I really have been able (so far) to stay active and really have felt good…and that’s a fine fact to help (in a teeny tiny way) dispel ‘cancer ignorance’.   

 

As for the others offering to help being merely lip service, that is pretty much been my experience this go-round.  Human nature, I guess.  For a while I could feel the resentment building up in me.  Sure, the neighbors always say to “how can we help”.  But when they see me hauling groceries up a flight of stairs, do they run over to actually help?  Naah.  Aren’t these the same people I cooked meals for when their kitchen was being remodeled …sometimes 3 times a week?  But then I decided that the resentment was just feeding the Bad Wolf and have tried hard to drop it.  Sometimes I wish I had a “shift/delete” key on my mental keyboard. 

 

Just as I was finishing this note, an old friend called (one who I’ve rarely even talked to in 15 years) and said she and her husband were both going to make directed blood donations for me.  Now there’s some actual help!!    

 

Sometimes we all need a SHIFT/DELETE BUTTON! 

 

Regards - Paella

 

 

 

 

 

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

I've learned when people say "How you doing" often it is along the lines of saying "Good Morning". The one that is really starting to bug me is "You look so good for all that you have been through.'. When it comes from someone I know is a cancer survivor, or watched a family member/close friend with cancer,  I do take it as a compliment. But those that did not have cancer, and no one close to them have cancer, I want to respond with "What did you think I should look like?". GRRRR.

 

po18guy
Posts: 994
Joined: Nov 2011

The reactions of "normal people", which also includes each of us before cancer, is not well thought out because none of us spends daily time pondering how we will greet others should we suddenly be told they have a dread disease. And which disease? We can help them carry heavy packages but not heavy disease burdens. At work, we used to tell others, "Better you than me!" and while that may indeed apply, it is still generally considered to be inappropriate. What else is there to say? "Sucks to be you"? Not conducive to continuing friendship. Either no one believes in prayer anymore, or they are offended if you pray. Saying "Cancer sucks" is essentially the same as telling them "You're screwed." Modern culture has made life awkward.

Perhaps best to ask others how they are dealing with it. Nothing we can say will be of use until we know their mindset. Condolences are well-intended but too nebulous and vanilla. Although, most whom we speak with have been touched by cancer, the very mention of it may bring them to tears. Although, at our worst, when we are frail, gray-skinned and hairless, no one will suspect it was a bad burrito that did it.

Some are capable of hearing about it and others not. Answer if asked, because lying will not net you any gain. I was glad to tell my co-workers, as all could see me dwindling away and truth is better than rumors. They donated sick leave and did a make-over of our deck and back yard. That was love - which would not have been shown had they not known. Your call.    

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

po18guy,

I laughed at your comments about the use of "sucks". When I told our one daughter I was diagnosed with cancer that is exactly what she said "that sucks!".  But it was my kid and she says how she feels. Plus I had to agree with her. You are right, for most people to say that to someone who has cancer, it would be the worse. 

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

I think one way of looking at it is why would you tell someone ?

What are the ramifications of telling someone ?

What are you looking for by telling someone.

Are you getting looks...because you're not yourself ?  Losing weight, losing hair, not able to perform as well

not as outgoing as prior, etc

Are you looking to unburden yourself and hoping to dialogue with someone you trust ?

Are you looking for help - emotional, financial, travel, meals, etc ?

Are you looking for empathy (I'll avoid pity).

Just a few thoughts.

Personally, I had to let my employer know. I knew if some people found out it

would circulate like an epidemic. In my role I could not have that.

Anyway just some thoughts while at work on break.

 

Steve.

 

 

 

 

cif
Posts: 10
Joined: Jul 2015

If you are fortunate to be here before telling, read GSPS2 post above.  I wish I had.  In my humble opinion, if you share, then once you are well you will never be able to escape it from being thrown in your face daily for the rest of your life.  It will be hard or harder to keep it from defining you, labelling you, or influencing the environment around you.  My opinion.

I already made the decision to not tell.  I had one friend across the street, well I thought, I now learned a new term Frienemy.  I was very smart career person and the job left me with little time to eat, sleep and I cared for my parents from stroke.  She was only person I knew outside of family and work.  I asked her if she would promise to keep in confidence and expressed how important to my health and well being that she commit to that before agreeing.  After several emphasis and her agreements I told her.  I stated how important it was nobody know so I could walk around neighbor hood without feeling like a bug or pitty glances or change my comfort level in my own home and surroundings.  Well chemo didn't go well for me, after the first round I perm lost balance, after third speach and breathing, after fourth ability to read or write or remember words or what I did for a living I have no recallection of chemos 5 and 6 other than no pooing for two months and pain from distended gut, after the 12th could not hide issues from parents (so many excuses to skip holidays and birthdays ran out and could not hide body and mind and speach problems).  12 months of chemo, 19 rounds, One year of chemo so bad that family decided to wait a year for me to adjust to changes before reminding me I had a sister.  The term out of sight out of mind took on  a new meaning ... still to this day 3 years later I can forget my own family, pets, so much.  I use special programs and voice to text for things like this.  It also can take days so I start and post using cut paste from the apps.  So I went from mensa smart super women bread winner and caregiver to, well, I feel retarded now.  I kid you not, the worst part of chemo was none of the side effects, it was my neighbor telling me during chemo 4 that she told the neighborhood because she felt she knew better what was good for me - it sent me into a mental melt down - medical staff and counselors to this day cannot fix the anger I still have, and not really sure if it caused a stroke or not.  The anger is bad for me, and I guess I'm a sinner for not being able to forgive her, which only hurts me.  But to add insult, on a daily basis she is now telling neighbors that she has lots of friends that had Breast cancer and they worked full-time through it and had no issues.  No joke, daily.  Everyday I wish I could move out of this neighborhood and start over, so I can try to rehab without feeling judged or scrutinized by her and her social media her observations of me.  Now I have found a couple of ladies trying to help me (the ones that clued me in about her dissing me to the world), but now I do not trust anyone nor my ability to judge if a person is nice and safe to talk to.  Of everyone that knows (from her of course), she is the ONLY person that has not made any effort to help and actually seems to get satisfaction that I'm weaker and dumber now.  In my humble opinion, just keep the information under your own roof.  I'm thankful I never told my family and relatives until a year later, now they just call daily with the pathetic greeting in airy voice , how are you today?  I just want to respond shut the .... up.  Can we do anything for  you .... really...I was your caregiver before all this, what can you possibly do?  You can't drive, I'm lucky if I can drive once a month.   Please folks - if your a friend or family, just keep mouth closed and listen and only offer sincere help with things you can and will follow through with, like texting your at store are there a couple of critical items I can get you such as eggs - if response is too much than be honest and express a list of two or three items, we WILL pay you back.   I would wait and not tell anyone, but maybe you are luckier with being surrounded by true friends.  I unfortunately didn't learn my neighbor across the street had a reputation of being the town cryier and story bender.  Others didn't either but have distanced themselves now that it is known.  So avoid the drama.  Avoid conversations changing from when to plant something or local event to instead hearing about "I don't understand why you had issues, I've never heard of anyone having issues after chemo" blah blah.  In all honesty, I truely believe because I was very smart, very athletic, did all the inside and outside house and yard work, had high paying salary that she got satisfaction I lost it all.  But folks, I worked very hard, I studied to stay technically up to date when not at work, worked late to test strategies before implementing them, and excelled at multitasking - and completing tasks excellently and quickly, quickly learning new jobs to do duties of those out sick or quit, being on call 24x7x365 to job and parents, and struggling with a marriage that lacked support and help in maintaining the home, yard, finances, etc. then discovering two weeks after my diagnosis that his laziness issues were due to a sneaky illness that took years before fullblown diagnosed.  Bright side, he got treatment and was able to care and support me through this, and this past year I was able to function enough to get him through his surgeries and 10 months of recouping.

I am thankful her friends had no issues from chemo and that they are doing so well.  Readers, cancers differ and the chemicals differ and the number of rounds given and time inbetween differ, Breast Cancer, bone cancer, brain cancer, prostate cancer all have numerous classifications beyond staging that impacts the treatment plan.  Literally, chemo is rat poision and weed killer to kill cancer and healthy cells to the edge teater on death.  If I had known what I know now I would have skipped it, incidently, the year I finished the treatment changed to two low impact drugs from the three deadly ones I had - thank goodness, because I know many that got bad permanent brain and body damage like me.  But for many cancers like leukemia it has high benefit rates. Same for various cancers and types of them.  So if you are not a patient, you are likely pretty ignorant of the details and of the fact that the same treatment is not given to people 'you know' had chemo.   

Regarding my neighbor across the street ... well, I think I'll give her a nick name of Schadenfreude

Since she is too lazy to google ill effects from chemo then I doubt she'll google my new nick name for her. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

cif,

A person who is to receive long-term chemo:  I do not think it is possible for them to conceal their sickness for very long.  You just look too bad. Over 50% of all Lymphoma chemo drugs cause total hair loss if taken long-term. My mother-in-law told me during treatment that she thought bald guys look nice, and many stars go bald: Bruce Willis and others.  I told her: a person on chemo does not look bald, they look like a person on chemoThese are not the same. Baldness does not cause a person's eyebrows and eyelashes to fall out, to discolor their skin, to cause emaciation.   I was picking my son up from middle school one day toward the end of my 6 months of R-ABVD, and the coach said to me in passing, "You look better today, Mr. ----- !  You're not grey-colored like yesterday."  My infusion center had truly idiotic photos all over of supposid chemo patients riding in convertables down the coast, with bright smiles, living the good life.  The photos are supposed to demonstrate "hope."  You see these same photos in cancer magazines as drug ads.  I find them absurd and insulting: Insulting because they are a lie, dishonest to the core.  It may be that their drugs cure many people, but they do not look, feel, or act anything like the people depicted while in treatment.  If the same pictures were taken in Leavenworth or Sing-Sing the effect would be the same: a damnable lie and farce.  Of course, the photos in these drug ads are made by marketing executives, who are among the world's most ignorant individuals. 

The coach intended his statement to be positive, a statement of his gladness that I looked better. And that is the way I received it.    I was too weak to work (slept about 15-17 hours per day), lost over 20% of my body weight.  My neighbor, who had NHL a year before me, went from around 300 pounds to around 150, and could not walk for six months.  Received his R-EPOCH as an inpatient, and could not work for a year.  Such cases are common.  Actually, outside of the lymphomas and a few other more readily treated cancers, unless they are caught early (pre-metastatic), the long-term result of cancer, even with chemo, is pretty often worse than that: death.  I have had Stage II prostate cancer as well as Hodgkins, and watched friends go through Hospice with prostate till they died.  Chemo is NEVER curative of prostate cancer, ever. It is successful toward pallative-effect however, sometimes long-term. Hormonal therapy is also very effective in many cases, givng men sometimes an additional ten yers of life.  But metastatric prostate cancer is a known death sentence, despite any current drugs: The only question is a matter of whether it is soon or long away.    In other words, with most instances of cancer, there simply is no way to "not let people know" that you are sick.   One can become a recluse, wear wigs and heavy clothing, never leave the house.   In effect, try to look like Jackie Kennedy avoiding photographers.  But these behaviors increase attention, they do not avoid it.  I have never understood people who try to conceal their sickness; it preplexes me.

One thing you discuss I totally agree with: that people are ignorant of chemo and cancer generally, and that they love nothing so much as to gossip.   Their ignorace is deep-seated, and partially derived from the path most people on chem had in decades past, since what little they know they learned from their equally ignorant parents, aunts and uncles.  I know the starring, the looking away, the unwillingness to speak.  At church and elsewhere over the years since my wellness, virtually no one would ask me myself how I was; they would very obviously go behind my back to ask my wife.  There are many instances of this.

To me, the gossip, the ignorance, is just part of the cancer package. There is no way to avoid it, it is part of the suffering.  People are understandably ignorant of something as complex as cancer, since they are ignorant of most things.  On most college campuses the students cannot tell you who the second president of the US was, or identify the Declaration of Independence if half of it is read to them aloud.   They have no idea what the difference between a 'Bolshevik' and a 'Jacobin' is or was.  Therefore, they can hardly be expected to know the probable course of their neighbor, who was just diagnosed with, say, Stage III Triple Negative Breast cancer, or theior other neighbor with Stage II Peritoneal cancer.    All they know are the specs on their iPhone and who this star or that is dating, or who had the latest cosmetic surgery.

I accept them as they are, where they are at.  You and I will not transform the human race into a thoughtful crowd of respectful people. They never were like that, and never will be.    You will find peace, if you ever do, only from within, not from without.

max

 

Rocquie's picture
Rocquie
Posts: 831
Joined: Mar 2013

I am still here. I read GSP2's post as well as all the others of my friends a year ago. I appreciated them then and enjoyed reading them again, since the thread came back to the top. Unfortunately, we had a horrible tragedy in our family the day after I wrote the above post. I had just been told I was having a recurrence of my lymphoma and suddenly had to take a trip to be with family. 

I am sorry you are having so many long-term side effects from your treatment. I hope things will improve in time. I am also sorry you feel so betrayed and angry with your neighbor. It sounds like others in your neighborhood have her number and have tried to reassure you they don't pay attention to her. Have you talked with your doctor about the way you are feeling. Perhaps some therapy or medication would help? 

As for me, my lymphoma remains stable and I am chosing not to take treatment at this time. My next scan will be in September and things could change at that time. As for now, my privacy is intact.

Best,

Rocquie

 

ShadyGuy's picture
ShadyGuy
Posts: 397
Joined: Jan 2017

can keep a secret but only if one of them is dead.

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