15 replies to this topic

[Dsrwbr4536]

Ok so maybe it is my imagination but I don't think so. Since my husbands dx it seems like people are treating us differently. Last night for example I was walking the dog and the neighbors who we are very good friends with seemed very distant. One of the guys came over and talked to me but the women whom I regularly hang out with seemed to avoid me like I have the plague. I felt like they looked at me from across the street like I had my head on backwards. They did not speak to me at all. Nothing has changed. My husband has been a little tired but it has only been a week so what is up with this? Again is this just me or has this happened to others? It really kind of hurt my feelings last night.

[knoppl]

I can relate to this. I have only told family and close friends because I have found that some people do act differently. I regret telling as many people as I have.  It is what it is and people will act how they act even though it is hurtful and we are still who we are. I am sorry this has happened and all I can come up with is that people are uncomfortable with it all and just don't know what to say or do. I hope they come around once they realize that your husband is the same person;.

[Susan61]

Hi:  Its times like this that you find out who your real friends are, and in some cases people just hear LEUKEMIA and are at a loss for words.  They do not mean anything by it.  Give them time to adjust.  I was very hurt when I was first diagnosed.   I had worked with all these people for 13 years, and when I left work hardly anyone followed up with me to see how I was doing.   I left not knowing how things would be, as we were looking at a possible BMT at the time. We always had a going away luncheon for anyone who was leaving their job, even if they were only with us for 2 months.  I was also the one who collected money and went out for a little gift to give the person at the luncheon. Here I was 13 years with the company, and built many a friendship.  Got along with everyone very well.  I got nothing but Hope You Feel Better!!  I cleaned out my desk, and left.  I did have a few close friends from my workplace, which I still keep in contact with.  People can be very weird. Thats all I can say.  Wait and see.  As for my neighbors, they were great and very supportive as well as shocked to find out.

Susan

[CallMeLucky]

I'm sorry you are going through this.  I limited the number of people I told because right away I found people were acting weird.  Most of the time it's because people don't know what to say and they are afraid of saying something wrong.  Chances are they do not know what CML is and they are just assuming that things aren't going to turn out well.  In time they will see that things are okay and he is plugging along and things should get back to normal, although some people I think will always be uncomfortable with it.

[GerryL]

I think a lot of people just don't know what to say or do and can feel a bit uncomfortable about it, plus there have been quite a few movies and TV shows where leukemia was an automatic death sentence. I know I was in shock when I first got diagnosed until I got a handle on our type of leukemia and understood what the TKIs could do.

Quite a few people at my workplace know I have leukemia and can see I am doing well and I have never noticed they or any of my friends have any issues with it, once they got over the shock. However you may get other dumb comments - one of which is "if you were going to get cancer, this is probably a good one to get". But none of my close friends have ever said anything that stupid thankfully. The other thing that happens now is people check their own health issues with me, seems like I am a bit of an expert, particularly when it comes to cancer and blood issues. They also check what symptoms I had so they can check themselves, unfortunately for them I didn't have any other than a slight increase in by WBC and I had to chase up getting tests for that.

Anyway - I guess my main comment is give your friends a chance, ignorance and shock are probably the main culprits for what is happening. Invite your friends around so they can see your husband is doing well and you can chat with them about the prognosis.

[paralyzed]

I've heard you should never forget your memory...

I remember hearing of death and all sorts of  illness of co-workers and their family members, friends, neighbors etc. While I empathized and greived briefly, I was all too happy to return home, hug my wife and kid a little harder, and silently thank god we are all ok. I'd follow up with them as we spoke with a typical...."So How are you"? Which was usually met with a "Things are OK, I'm just taking it one day at a time"....Whew, because I really didn't think I could take anything in detail. It may force me to view these events as if my son or wife were experiencing them...I was all to pleased to hear things are going alright and move on. There seem to be certain events that change someone from a friend/aquaintaince to viewing them as..."That's the guy"...a label that is hard to shake. "Thats the guy" who....went to prison...or..got a DUI...

We would continue this dance for a long time and I'd be thankful "I'm not the guy".

Well my wife "the women that got Leukemia...Shes" the girl" that had a Bone Marrow transplant...Shes "the one" that....................................

And Me "I'm the guy" now whos wife..........................

And my sons "the kid" whose mom....................................

Cancer is scary...but Leukemia is beyond comprehension and a Bone marrow Transplant is something most people purposely insulate themselves from unless It's them, their spouse or their child who gets sick with these blood cancers. Sometimes parents too...but often its one sibling doing most of the caretaking and other siblings trying hard not to help.

I'd love to blow someones mind and really tell them what our life is now like.

I'm convinced they peek as my wife is out somewhere to get a glimpse of what someone who has leukemia and had a BMT look like. They are sometimes just as happy to get a side or rear view lest you make eye contact with them.

I think others feel that eventually you will die with Leukemia so they protect themselves by creating distance between us.

It's crazy and so are some people. I havent learned much from the last two years except I hate all Leukemias and Lymphomas.

Jim

[gunner]

Take your pick.

Half of this crew is offended when people react with concern and fear about the 'C' word.

Half of the people are offended when people dismiss CML because 'you look good, and just take a pill everyday'.

The other half are not very good at statistics.

I keep it to myself except for a few close friends. I remember struggling with issues early on. Why me? Why should I be expected to remain strong and calm, when I, by myself, am dealing with this big 'C' stuff. I also remember being in a group where folks were asked to share some of their life experiences. I thought to myself how I had it so tough, but wasn't going to expose my 'secret'. As they went around our small group, two thirds of the people had dealt with cancer or some other serious disease. Either themselves or a close relative. Dealing with the loss of children, close friends, and spouses. I realized that I fall into that category of 'you look good, and just take a pill everyday'. It's more complicated than that of course, and some of us are dealing with terrible side effects, financial impact, employement impact, insurance issues, loss of drug effectiveness, and so on.

I also know that people, myself included, struggle with how to deal with the misfortunes of others. How do you respond to a friends letter that says his wife has cancer. Or that his business is struggling, and they may have to close. Or to a friend who has lost his job. Life is tough. Bad stuff sucks. But you either become consumed by it, you ignore it, or you deal with it in some manner and move on.

I know that I am not perfect in how I react to other folks situations. I don't know how I could be. Thus, I am resolved to do what I can to be sensitive to other folks needs, yet to not become consumed by the struggles of the world. And, I am resolved to be more understanding of how folks react to me and my struggles or the struggles of those close to me.

[Oldtimer]

It depends on the people and the situation. I had the opposite experience seventeen years ago. 350 of my co workers gave a blood sample to see if they were a possible bone marrow match (I never found a match). But they did all kinds of things to help. Ran the marrow drive, cut my grass, babysit, cooked meals, etc. I was very open with them. I get a better response even now when I tell people I had terminal cancer seventeen years ago, because back then that's what it was. People usually respond positively, like "wow, you are a miracle man." Hang in there and don't worry about what others think. You find out who your real friends are in a situation like this. Some of them honestly may not know how to respond because they have never experienced any major sickness in their lives. Focus on taking your medicine religiously, some type of exercise, and getting good rest and you will do fine. Kidd.

[Justaspouse]

Dsrwbr4536:

You and your spouse should show them how you want to interact. Make the first move - speak up, wave, etc. Don't wait for them. They might be trying to take their cues from you and your behavior. Talk about your CML only as much as you want to, but you can also talk about all the other normal stuff (weather, sports, etc.) to show them that the you they know has not gone away. Also, since this is all relatively new to you yet, you might be focused more on seeing things in terms of the CML. It's a big adjustment for everyone in the family to get used to. As weeks and months go by, your whole mindset will settle down. Interactions with others become more normal and hopefully not focused only on how your husband is doing. That's not to belittle the seriousness of CML, rather to put it in perspective as you change from the initial "crisis" mindset to one more of maintenance.

[dee145]

OMG I posted awhile ago about this.  I have lost so many friends since diagnosis.  I actually had one tell me to suck it up and move on, she's tired of talking about it but yet she said to call her or come over anytime I needed her at the beginning.   It hurts so bad cause we were friends for over 20 yrs, i was there for her when her son killed himself and now she says this to me.  I don't get invited to do things with the girls like I use to.  I have 2 left I can really depend on, so yes I know how it feels.  IT REALLY HURTS!!!!!

                                            Dee

[Dsrwbr4536]

I want to thank you all for your comments. Even though I am not happy about it at least I know that I am probably not imagining it either. I am truly sorry that all of you have experienced these same feelings but the comments by Dee are heartbreaking. The only thing that I can say is that some people are just mean and should feel ashamed of themselves. For now I am hoping things will get better when others get used to the situation, like many of you have stated. As for the ones that can't I guess that I really don't need friends like that anyway.

[donkatking]

Been lucky about this so far as eveyone I have told have been very supportive, my work especially so.  They went as far as extending me the privledge of work from home if I'm not feeling good.  So far I have not taken them up on this offer but I have been assigned a laptop as my workstation.  I just told them that there would be days when I would not feel good but my goal was not to miss a day of work because of this diagnosis.  Ended up taking the day off yesterday as I have developed what may be a bad sinus infection.  But I was back at work today, although not at 100 percent.  I have found that some of my co-workers have gone as far as reading up about CML and have become alittle bit knowledgable themselves since I have told them.  No one has treated me as though I have a plague or something contagious.  I keep two handy pamphlets in my desk drawer fo anyone who does have a question and I give it to them to look at if they wish so they have alittle bit of knowledge about the different types of Leukemnia.  I find that goes a long way.  People always stop by to just ask if i am feeling OK and that's fine with me.  I often ask them how thay feel or just say good morning.   I think people often think of Leukemnia as the other types of cancer they hear about.  You don't hear of CML on TV or in any newspapers so I believe if you use the word cancer they think "is it like colon, breast or skin cancer.  That's what people most hear about.  You see alot about things like race for the cure, breast cancer awareness, and charity events for other types of cancer so I believe what we have is not at any forefront of information.  Telling someone and then explaining what you have, tell alittle about the side effects of the medication you take helps ease the fears someone may have.  Like I said, I have been blessed to be around so may supportive people.  It helps me get through the day even when I feel badly.

[VickiW]

Good morning everyone!

ok, here's my 2 cents on the subject.

Found out early on if my hubby told someone about my CML, people would back peddle and seem like they did not know how to talk to ME.  They also didn't seem to know how to interact with my hubby, like they were afraid to smile? be normal? including all our kids.  But, I figured out that if I was the one that told people, and HOW I told them made a huge difference.  The approach that has worked 100% for me since goes as follows;  "Oh, by the way, did you know I have Leukemia?" (shock, discomfort, whatever) I let them process for a second or two, but not longer or things do get uncomfortable,  and depending on who it is, I might let them give a quick "No, I didn't know" but either way I quickly respond with, "it's ok, have my up days and down days BUT I'm living with CML, not dying from it" (smile) and just move on with whatever we were doing.  Sometimes, depending upon the overall reaction, I like to add a joke about better living thru modern chemistry.  I avoid any tone of drama and ALWAYS do it with a smile.  This has never failed to release the tension and give the other person permission to act normally around me.  It also seems to let them know that, when they are ready, they can ask me more about it, if they want.  I almost always get a sincere "How are you doing?" for a few meetings after that but soon we are back to just smiles and "Hi".  This also seems to go a long way to letting people know it's ok to be "normal" with my hubby.

This approach might not work for everyone but I have always been a bit of a glass half full type of person, never much of a drama queen, and maybe because I was really so close to dead when I was dxd, just really grateful to The Lord (and modern chemistry) for each day that I am still here.  This attitude also seems to go a long way with others and their compassion/understanding when I really am having one of those "down" days.

Hope this helps,

Vicki

[TomL]

I have been two years since diagnosis. I am a Vietnam vet, and I do not know another way to put this, but I was prepared to die more than once over 45 years ago. I mean withing what I thought might have been seconds ore less. For that reason, I have "accepted" my mortality for decades now. When I was diagnosed, with my wife in the room, I comforted her. For several days I spent most of my time working to help HER get her hands around MY illness. It happened again when I was diagnosed with Pulmonary Fibrosis in January of this year. Worse really, this is one with no treatment! We went through similar situations with our friends, and close friends and family -- not once, but TWICE now. I can tell you that things will "fix themselves". Your real friends will adjust to the situation and be there for you. My own observation is that most of the "issues" were self-inflicted. That is, the response of others was mostly due to my wife's response, and how I tried to help her live with it. Thing will work out for you, I promise. Those of us with CML are pretty lucky now, with the treatments available. Side effects suck, and no one seems to understand -- not doctors, not family or friends, and certainly not the Social Security administration! To be ill, with all the side effects most of us endure; while looking perfectly healthy is not readily accepted.

If you want something interesting, try adding PF to the mix. That really gets awkward.

[Teresabourgeois]

Weird but true!  I've been dx since Feb, 2011 and when people first found out I had more food brought to my house than I could ever eat.  It made me cry because I wasn't dying.  Then one of my friends husbands told her to not get to close to me because she was going to get hurt when I died.  I thought that I was imagining this myself but I now know people just don't know what to do.  Then the movie came out last year "My sister's Keeper".  I kinda wish some food would arrive at my house now, I hate cooking