10 replies to this topic

[lanarae]

Hi Friends:

I have posted a few times on here before and love the support I find every time I stop by.

I just have been needing to connect with some of you and get off my chest that I have been feeling so misunderstood in my life.  I was diagnosed three and a half years ago and having a good response on Gleevec.  It seems that as more time passes the more people around me forget that I am living with cancer.  Friends, acquaintances, church members, even some family members don't register the fact that this is still the same burden on my life as it was three years ago.  I still have to sleep 12 hours a night, I still have diarrhea daily, and brain fog, etc. etc.  I think the thing is that I have made a decision in my life to crawl out of bed each day and try and smile and keep living life and doing normal things and it makes it easy for people to forget the reality of things.  I put on my best game face everyday and now it is leading to me feeling a little misunderstood and alone.

I also am struggling with all the different "compartments" of my life with cancer.  There is the medical part.  There is the spiritual and emotional parts. And there is the physical part.  I have not found a way to have all these areas addressed together.  You know, my doctor of course understands the medical part and tries to understand the physical part, but lacks in understanding the spiritual part...My priest tries to understand the spiritual and emotional aspects, but cannot being to fathom the physical and medical part...My husband comes close in all the areas to understanding the best, yet - unless you have cancer, you will never fully get the full depth to it all (the good and the bad).

I have never been to a cancer support group.  Do any of you go?  Why do I have a need for people around me to understand that I am dealing with cancer?  Is it because my CML is pretty invisible to the outside world at this point in my journey...

I don't know...I feel like the only people who really "get" me are other people with incurable cancers.

Thanks for listening!

Lana 

[momruns]

Lana,

Maybe I am still in a form of denial.  I was dx in Feb 2011 and still find it difficult to handle when people at work treat me different now because of my dx.  I guess I don't want to be any different than I was Jan 2011 so I guess that is denial to some extent.  I feel that when I am asked how I am and do I need to be off work early I think to myself that I should be sicker than I am. 

This cancer is a total life experience as you said, physical, mental and spiritual.  Since this is a life-altering diagnosis, we do need each other to put all 3 parts together.  I do not know you but I have bonded with you thru this disease, that makes you special. 

Thank you for sharing,

Loreta

[Marnie]

Hi, Lana. . .I am stilling working on figuring myself out after almost 3 years.  I don't want people to treat me differently, and yet I get irritated when they don't ask how I'm doing.  But then when my Mom starts every conversation with "how are you doing?" it drives me crazy!  I almost went to the local LLS support group, but decided that I didn't really want to sit around and talk about cancer.  I THINK about it enough as it is.  Maybe some day I'll attend, but not now.  I have started being more vocal to my husband about when I'm not feeling great. . .at least that makes him more aware of it.  On the other hand, mostly I try to just get on with life as it was before.  Easier now that I'm on Sprycel.  Gleevec and it's famous bathroom issues makes it hard to forget that you have cml. 

Good luck figuring things out.  I think it will take time, but most of us will find what we need to do in order to take care of ourselves in all of the areas you mentioned.  Coming to this forum is good, but I do think that we (or at least I) need to be careful not to get drawn into negativity when we all start to comiserate. 

Marnie

[pammartin]

Hi Lana,

I believe we walk a fine line, on one hand we do not want to be different, but on the other, when life pushes down too hard we wish the people around us would remember we have cancer.  We usually go for groceries on Sunday, after catching up on the week's worth of work laundry, track clothes, and daily laundry, (no one seems to remember to bring anything home or in the house till Sunday) we pile in the car and head for the store.  There is usually at least one stop before and after the actual grocery stop.  Then an hour or so at the store, load the stuff in the car, head home unload it to the house, and by then I am not embarrassed to say I am heading for the couch.  My son runs to the television, and my husband looks at me like he does not understand why I am so tired and can't do more.  He does help and is not unkind about it, but you can see his feelings, he works all week, I should be able to do this while he sits down.  I try not to lay the cancer card on the table all the time, but it seems like everyone thinks if your labs are positive, then you should be the person you were, and the people around you wonder why you are not.  We eat leftovers more often, my husband hates them, not sure why.  There are days except for going out with the dogs I do almost nothing, I don't like it either, but it seems to be my life right now.  It would be great if we could hit a happy medium with the people around us, I think back to the post last week about what not to say to a cancer patient.  I cannot tell you how many times I have heard 'Well how are you feeling, I mean, well you look good, you look ok."  I would like to bring out the ugly sarcastic monster, but I give simple answers.  No, I don't look that different on the outside, but my inside has changed forever, and it is hurtful and annoying that even the people close to me often forget.  I loved what you wrote about putting your best face forward and getting out of bed, it seems because we choose to do this, everything should be as it was, and it probably will never be again.  I live in a very rural area, but if there were a LLS support group near by I believe I would attend.  I do relate to what Marnie said, I don't want to sit around and talk about cancer, I think about it enough, but perhaps if there were a support group available, I could support others while receiving support, but in person, not online.  For years I attended an autism support group for my son, it helped me in so many ways I cannot explain, I quickly realized some of my issues were not that bad, others were dealing with much worse, I offered suggestions to others, and received a ton of support for my in home situations.  I do not believe I ever walked away from a group session without feeling some form of hope.  If you have the option to attend a group, I would try it, if you do not enjoy the experience, there is always the boards to come back too.  Each one of us has our own demons to conquer along with the ugliest of all, the CML, looking for support where people understand is one of the most positive ways to look for some form of peace. 

Pam

[lanarae]

Thanks everyone for your responses.  I didn't mean to be on the pity pot last night - I think I was overly tired and this has been on my mind for a while so it kinda sounded like I was whining (?).  I'm gonna have a great day today and hope you all do too!!! 

Thanks for the encouragement!

Lana

[jrsboo]

What sometimes we need a gentle reminder of, is that we are living with a chronic disease.  I have found it very helpful to re-read this posting: http://www.alpinegui...IC ILLNESS.html

She does a marvelous job of laying out what it feels like, why it feels so awful sometimes and gives great tips on how to keep going. 

And I would encourage a support group encounter.  I have attended one CML group thing, and found it so refreshing to hear other's stories in person, being able to add to the collective information make you feel good, and usually helping someone else gives you a psychic lift as well.

Just my 2 cents.

Caroline

[pammartin]

You sounded human.  And that is ok.  I do hope you have a great day also!

[KerriD]

I'm glad you posted Lana.  I struggle with the same issues.  I am a single mom of 2 boys ages 12 & 10 and I work full time.  I feel lucky to have done so well on Tasigna since my diagnosis in Aug 2011.  But I am TIRED....so tired after working and getting the kids everywhere they need to be...all I want to do is crawl up into a ball and rest.  I was very adamant with my family and close friends about not wanting to be treated differently.  I have only told a few people at my work for the same reason.  People are kind to ask how I am feeling but I find myself always trying to make them feel better by saying.."Im great...feeling great!" 

I grew up with a hypochondriac mother (she is deceased now) and she made sure everyone knew of every little ache or pain she had.  I remember how that felt as a child and do NOT want that for my kids.  So I think that is a big part of why I play down my CML.

I'm am grateful for this message board where I can freely speak about how I feel and reading about everyone elses feeling helps me feel less alone in this lifelong issue.

Kerri

[luvmybees24]

I feel you! I was dx in November 2011 and by December everyone pretty much assumed I was "Fine". I am responding well to treatment and feel and LOOK fine but inside I am a mess. I can't blame them, as people are generally uncomfortable and want to pretend everything is ok. There are a couple people I can go to that understand what I'm going through. It is frustrated feeling so bad inside and everyone thinking you are just fine. I want to go to a cancer support group but I don't feel right doing so. I feel like how can I stand there and whine about my CML when I feel great and it's under control when there are people who are going through chemo, dying or losing children to leukemia. If I could find a CML support group I would join in a heart beat. As soon as I get some form of medical insurance I am going to see a therapist.

[KerriD]

I felt the same way about a support group...how could I complain about being tired and itchy to people going thru much worse.

[Susan61]

Hi Lana:  You will get a lot of different responses, and I do understand how you feel.  Thats why we all have each other here, because nobody will understand like we all do.  I know my husband and immediate family understands what I go through, and thats all the matters to me.  I have so many friends that do not even keep in touch anymore, therefore, I have found out who my true friends are.

     As for a support group.  I joined one when first diagnosed.  All it did was depress me.  Someone told me I really  needed to join a group, and she went with me to a meeting.  When we left, she totally agreed that it was not a good thing for me after listening to all these other people with nothing positive to put on the table. I did not need all this negative stuff.

   I hope you find some comfort in how you want to handle it for you.  You know you have all of us anytime of day or night.  How much better can that get?