35 replies to this topic

[luvmybees24]

It's funny how the same people who were bawling over me the week I was diagnosed I can barely get to even get TOGETHER with me now. What the heck? No, it's not because I did anything wrong. I just think it's funny how once everyone realized I was going to live, no one appeared to care anymore. Kinda makes me sad. I don't drone on and on about my side effects but it seems no one ever wants to hear it. Like I was somewhat supposed to be "over it" by now. Anyone else have this problem? My best friend (I almost want to put that in quotes) is just too busy for me now. I want to scream at her how I have CANCER and now I need her more than ever but she's too wrapped up in her own life now to make time for me. No one ever wants to hear me complain about anything. I say my hip hurts and my mom's eyes just kinda glaze over. I guess I could use a therapist but I'm still fighting to get some kind of insurance coverage and can't pay for any kind of therapist right now. I also don't care to see students working in the field. I want an actual licensed therapist. I just don't get why everyone expects me to be sunshine and rainbows all the time. Ugh.

[CallMeLucky]

Forget about sympathy, sometimes I feel like people expect more of me.  It's odd.  The fact is people don't like to deal with sickness - I suppose it is a fundamental instinct seen throughout the animal world.  You don't see too many water buffalo rallying around the wounded one - the heard moves on!

We like to think we are more evolved and we certainly have compassion but it does seems it runs its course and for many that run is not very long - perhaps it has more to do with attention span.

People rally around acute illnesses, but a chronic one, those folks tend to fade into the background like wallpaper.  Sometimes it frustrates me, but then I ask myself would I really want to be a position where I need that much support?  I take comfort in the fact my doctor doesn't pay much attention to me when I go in for a visit; in and out in a few minutes and back to work - I always say the day she starts taking interest in me is the day I have to start worrying.  My sister lovingly told me my CML updates have become "boring and predictable".

This groups has done a lot for many when it comes to support.  You could also look into some local cancer support groups, some even provide free counseling.  It's still new for you, in time you will get more used to it and CML will just be that annoying thing you drag around with you.

[taylorsharon]

bee, i know just what you mean my friend of 15 years come to see me once after i was dx bk in jan 09.. before i was ill she was calling for coffee and chats almost every day. dont know what hurt me the most her not wanting to bother with me anymore or the cml!!! 

[pammartin]

I believe we now represent what 'could' happen and people just cannot accept the idea.  I posted a while back I have begun to put people who I eventually tell about the CML in two categories.  Either I end up giving them sympathy because they are devastated at the news, or they almost run away from me because I represent reality and that is something they cannot handle.   I have continued to discover I have support where I would have never thought in some people, and most of those who I thought I could count on have left me far behind.  I have called few people my true friends in the past, since the CML diagnosis I have less.  hang in there, the ones that are left are real people you can count on.

[janne]

I can only echo what all of you have said in response here. To Luv, it is so true what is said here, most people do not do well with the issues that we face. It causes them to face their own fears and they do not want to, so they avoid the whole thing ! I too, as Pam says, have thought I would have support from some in whom it is lacking, but we do find that there are those who surprise us with their support. To Lucky, your reports are NEVER boring and predictable. You can tell your sister that all of us here on the boards (your imaginary friends) find your contributions to be most valuable ! Taylorsharon, I am sorry your friend has responded this way...perhaps you could call or message her in some way and tell her you would sure like to spend some time with her. A friend of 15 years duration is definitely something any of us would miss. Maybe a joke, like "...I have been busy on the cellular level, but I am otherwise not doing anything much, how about some coffee..??"   (This is borrowed from an old joke: I may look like I am not doing anything, but on a cellular level, I am actually quite busy.."...ok, lame but could break the ice..)  The point is, for some strange reason, I think we have to be the stronger ones in some situations as people do not know what to say, how to react, etc. Some may just be uncaring, but others truly at a loss for words...and we may be able to, on our better days, input something into their lives that will alter their sense of reality for their own betterment..and find a lost friend in the process. I am sure this will change .... as everyone on this board hasbeen so extremely valuable and wise and there are those out there who do not know what they are missing but not being a part of your life ! Blessings to all of you ! Janne

[pamsouth]

Dear Janne,  Your words  were so...... understanding full of love, wisdom and compassion.

Glad you are on the board along with all the others.  We are all sort of like a building block or paving a road to a better a journey for all those with a devastating disease and for those lives that we touch.

PamSouth

[Happycat]

The sympathy at work comes and goes, and is largely dependent on their own needs and perspectives. So when I drag myself into work with extreme fatigue, and someone needs to take the new guy out to lunch, his supervisor (and my employee) won't do it, because he just doesn't do lunch. So I took him, as dead tired as I was (and my employee knew that).  Yet, when I was sick and had to stay home last week, the same guy emails me that if I really needed my computer, he thought they could manage to get it to me. (I politely declined, told him I really had to rest, not work.). So he was solicitous, in a sorta strange way.

Then I have another guy at work who has suddenly become very solicitous, telling me I shouldn't be in the lab at all, because the chemicals in there could make my leukemia worse. In reality, I was in there to do an inspection, and he was trying to get rid of me or at least distract me so I wouldn't point out all his violations. That one amused me. Oh, and he told me the other day I shouldn't drink decaf coffee because they add a bunch of chemicals to it to replace the flavor lost when they remove the caffeine.

Today, I got two invites to dinner next week. We are being audited, so we take the auditor out the first night, then go out the second night to either celebrate or drown our sorrows. Our big cheese from corporate then emailed that none of us were required to come for dinner #2. I have a feeling that was done for my benefit, because I've told her before I can get through the work day, but generally am fatigued by the end of the day.

I can't complain about my kids and husband. They've been great. I just tell them i can't do something or I need help and they help out. My husband did the grocery shopping 2 wks in a row, too, because I was just too wiped out to do it.  And he baked me a cake and got the kids packed off to a sleepover so I could rest. Yeah, gotta admit, my family has been great.

Traci

[Susan61]

Hi:  We had this conversation well over a year ago, and everything your saying is true. The people who really matter are the ones who care.  You will find out who your true friends are.  I get the support I need from my husband and daughter, and a few good friends.  After  I was diagnosed with CML, a very good friend of mine lost her husband and then got breast cancer.  I was there to help her through everything, no matter how I was feeling.  She could not think straight, and was losing her house.  I got her to sell her house, and she ended up with enough money to buy a new car and buy a real nice mobile home in a retirement area.  She was so thankful for a few months.  Then she went to her class reunion, and found a old boyfriend.  Have not heard from her since.  I did all these things for her when I was feeling at my worst, and I did it because I wanted to do it for a friend.  You cannot dwell on these things, you  have to just move on.

If your doing good with your CML, just Thank God for everyday and the loved ones who you know will always be there for you.

Susan

[Marnie]

I don't want sympathy.  I want to be treated the same as I was BEFORE diagnosis.  I like the fact that most everyone sees me as the very same person that I was 3 years ago.  They didn't at first.  I have worked hard to make people forget that I have cml. 

[Judy2]

Hi Luvmybees,

The thing is I think CML is a strange cancer to have, I have said this before but I think it is worth repeating. I have a friend who had ovarian cancer 5 years ago. She was very sick from the chemo but now she is 5 years out and she is doing fine, thank G-D. She still has to go for scans every 6 months, and of course the worry is there if it will come back or not but it ends there, she is done with her treatment, we never are. For us, we have to take strong meds every day for the rest of our lives, not knowing what these meds will do to us in the long run as our TKIs are still relatively new. For some of us there are side effects we have to deal with each and every day. Every 3 months when we get our PCR tests we worry that we will have lost response. So yes, CML is a hard cancer to  have, just think of the words "chronic cancer",but I think to those around us who do not deal with the daily ins and outs of this disease they can not possibly understand what we go through. To them, they see us living, getting on with our lives, and so they think all is fine, but really even though things may be alright our lives have changed dramatically That is why this board is so great. A non-CMLer may not be able to understand what we go through but the people on this board understand. So luvmybees, keep venting, know we are here for you, know you are not alone and also, if you are at a cancer center you should be able to see a social worker free of charge, it's sort of a package deal.

Judy

[lthouse612]

Hello there luv... and good morning, at least it's morning here in VA.  I can relate to how you're feeling about the ones in your life behaving the way they do.  I think all of us will obviously have our own personal thoughts and feelings as to how we'd like to be treated from day to day. I think what throws me off is every day is different and sometimes we may need extra support whereas other days we just want to feel good and forget about having CML and have everyone else forget too.  For example, with me I have days where I actually feel good enough to do more than I normally would so it gives me a break from the reality of having CML.  I feel it later though as I've exhausted myself and I definitely feel it by the day or nights end.  Other times I feel really bad and I could actually use some extra help but I hate asking for it.  I usually am not one to ask for help if I could do it before but sometimes you just have to.  It's back and forth I suppose.  On occaision my wife and I will be talking about what to have for dinner... she will then usually ask me what can I handle (GI issues).  At this point everything is horrible on my stomach and I hate being reminded of it.  I do admit that I get irritable with this as it does "remind" me of having CML and all I want to do is just enjoy food again.  I know my wife is only trying to be thoughtful but I tell her it's better to just go with whatever and try not to worry about anything else.  As for my friends, I have learned which of those are the ones that will be there no matter what and I make sure I let them know how much I appreciate them for that.  They just come out and ask from time to time how my numbers are and how I'm doing overall.  They don't do this ALL the time but just on accaision.  I've also found there are still situations where they still need some suport from me in what they're dealing with in their life too.  This just makes me feel good to still be able to be there for them like they've been there for me in all of this.  These are the friends that you KNOW will jump on a plane or get in their car and drive to you no matter what!  If you needed help they would be there no quesitons asked.  Others we may find unfortunately will not be there when you would really like them to be.  I do like Lucky's water buffalo example.  This is true for some and it can be hard to accept...but on the other hand, there are more videos of water buffalo herds challenging lions to save their own... you can see it on YouTube. http://www.youtube.c...h?v=jprl9Xt34ko  Anyway, I hope in the future, whether it's family or friends, that they will be there for you when it counts the most. 

As most of you may have known I lost my mother last Dec. to liver cancer.  She has just turned 65.  I have had a hard time with not only losing her but also knowing I have both chronic liver disease and CML.  It's been hard accepting she's gone and that I'm still here fighting with my own body to stick around for as long as I can.  In my situation, I have felt that I needed more support from family while I was away helping my mother and father than I had gotten. ( I went home to SD for a few months)

Quite franky I was hurt and ticked off all at once.  Since then, I've realized that no matter what the situation, as much as we'd like or expect other's to behave or deal with, or support us in what we are going through... it just won't "BE" that way.  I don't believe it's because they are trying to be difficult or hurtful (in most cases anyway) but because they're just dealing with it as best they can with everything else they're already been dealing with in their own lives.  It's like an added dose of "holy crap" to where they just don't realize that what they're doing or how they've behaved towards us isn't helpful or supportive.  In my situation, it just didn't seem possible that they were behaving this way and so out of character.  It didn't make any sense and it still bothers me... I didn't like being told that I needed to move on after a certain point and I didn't like how their "understanding" was "limited" to how they felt.  It sorta scarred the whole relationship itself.  Maybe it's selfish of me to feel this way, I don't know, but it wasn't handled well at all.

Not sure if any of that helps you or not but I do know that those of us here, that remain on this emotional roller coaster are more sympathetic and far more understanding because we can relate to each other... It's always a good feeling to know that we aren't alone in all of this so try as best you can to take comfort in that and hopefully things will start to come around.  Hang in there and do take care...

Mark

[BY196]

What you've written is so true, Judy, and I've tried to explain it to people many times.  My mom had breast and thyroid cancer and each time there was a period of being treated and then a stopping point.  Of course she worries about recurrence but having cancer is something that's behind her for now.  We don't get to have that mindset.  I considered it a great advance when my first thought every morning upon awakening was not "Oh $*&! I have cancer."  I have heard a few people on this board say they rarely think about having CML, but I think about it every day when I take my TKI.  I also think about it when my 9-year-old daughter asks me if I'll help her when she has her first baby or when my 3-year-old repeats what he is told at day care: "Mommies and daddies always come back." 

I have been really struggling with side effects and sometimes when I don't look so good or I can't finish something for work, someone will ask me whether I'm having treatment (even though I've told folks that I will be having treatment forever).  When I was first diagnosed some of my clients wanted to band together and make meals for my family--I told them gently that things weren't quite that bad, luckily--but now people assume this leukemia nonsense is a thing of the past.

Beth

[Bashiemn]

I am so glad I found this site today - and saw your message. I was just thinking something similar.  I just finished my 3rd round of aggressive Chemotherapy for Anaplastic Large Cell Lymphoma.  I've noticed that the shock of my diagnosis 2 months ago has worn off and people are no longer there for me (for helping with rides to chemo, helping with meals or around the house)...  there are a couple of die hard people who are helping out, but not the people I expected to be there for me. It feels like I can't even talk about it any more. Like I have to move on and pretend like nothing has happened.  It makes me want to just move on and start a new life. A "post cancer" life where I only associate with the people who made a difference to me. I don't know how to ask for help at this point, because people are no longer offering...  I stopped knowing how to answer "how are you today?" texts (fyi I get these some days from my "best friend" who has only otherwise given me her time a couple of times in person since I was diagnosed.

It hurts.  It actually hurts worse sometimes than the fact that I have cancer...  I'm not sure how to approach any of it.

[Missouri]

As a caregiver, I can also sympathize all of the respondents to this post. No one cares about the caregiver.

[Bashiemn]

Missouri - Do you mean the person with the cancer doesn't care about their caregivers, or other people who don't understand all that the caregiver goes through?  I can't speak for the person that you are caring for?  I can see where other people wouldn't be there for the caregiver, but I can pretty much guarantee that your patient is grateful for all you do.  As a cancer patient, even though you are not my caregiver - I thank you for standing by your person and helping them.

I remember when my mother was in hospice and dying of Kidney Cancer, that very few people were there for me.  I remember my sister and I were my our mom's side every minute of the day. And when she passed away, my sisters friends brought her and her family meals and all of that, but none of my friends were there for me at all.  So I remember what that is like... it hurts a lot. 

Now I'm thinking about it... maybe it's just my friends/family.  

The worst part of this whole thought process is that I feel like I'm not WORTH the effort.  

[Missouri]

Thank you for the kind words, it is appreciated. But honestly, caregivers are the forgotten. I'm not complaining, it is just the way it is. It can be very difficult for anyone to see how much you are suffering, after all, you aren't the one with cancer. And of course, you always get the line, "Aren't you grateful you can be there for him/" Well, duh, yes, of course I am. But it doesn't negate how exhausting, how debilitating caregiving is. The diagnosis didn't change just his life. It changed mine forever, too. It isn't just the patient you take care of, it is absolutely everything in both of your lives. I know my husband is grateful for my being there, but as a patient, you have to know how all consuming cancer is. He can't see anything but how this is affecting him, and I don't expect him to be able to. I want him to concentrate his energy and his focus on fighting for his life as I am fighting for his life. But I would be lying if I didn't acknowledge that it hurts to be forgotten. Being a caregiver is just as isolating as being the patient. He has me to unload on. I have no one. It is what it is.

[Bashiemn]

Have you looked for a support group (other than this kind of venue?)  It is important that you take care of yourself too! Of course he is grateful to you! If you feel he unloads on you, it's probably because he trusts that you are there for him. I think he would be okay for you to tell him how overwhelming it is for you too.  I wish my husband would say something to me!  He won't even talk to me about the cancer, so he has made me feel like I cannot talk about it.  EVER

It's strange to say this, but I'm lucky - lucky that i have some energy to do things around the house, like help with the dishes and cleaning up and stuff.  I wasn't able to help out when i first started chemo, but i have more energy now as I'm 3 cycles in. Unfortunately, because I can do a little more, I noticed that he no longer helps like he did in the beginning. Just as with other people outside the home - it's like they think everything's fine now.

It's true cancer patients and their caregivers are in a similar situation. But because people acknowledge that we have cancer - it doesn't mean we are any less alone.  So I guess it's good that we can find each other out here on these boards.  Please know - you are NOT alone!

[Missouri]

I don't think anyone who hasn't gone through this has any idea how long it actually takes. This is my third time as a caregiver. I took care of my grandmother and my mother before this. It make this time a little harder because I know what to expect. But I was younger then, too!  And because of where we live, we are a bit more isolated then someone in an urban setting. The only support group available is over 50 miles away, and they meet in the mornings which I can't do with work. Blessings to all of you, and prayers lifted for you and your families.

[pamsouth]

Missouri wrote:
As a caregiver, I can also sympathize all of the respondents to this post. No one cares about the caregiver.

You all got it. 

I cared for my mom for 3 years,  until she passed away 8 days before her 84th birthday. 

She lived about 100 miles away and I was staying with her about 5 days a week for about 6 months.  I went home for the week end to see my husband and wash my clothes, and all that stuff.   Seems like after mom had her surgery in Feb 2001 she couldn't seem to recover, she would go from hospital to nursing home, to assisted living.  She had stomach surgery, then fell braking both her hips, then had a bleed, infections, just all sorts of things.

My sister from Florida came back to Indiana for the summer and was staying in the same area as mom was, for the summer, and was only living  about a mile from mom's assisted living. I asked her to help look after mom, while I went home, for a couple of days. I got a a call the next day, that my sis couldn't handle mom, (mom was heavy maintenance) sis said she didn't know what to do with mom etc (& I was her POA).  Well you don't have to be a POA to take her to the doctor or call the doctor or talk to the nurse.  I also had a twin sister and two nieces that worked in health care and 2 brothers.  If I was there taking care of mom they would show up, but when I went home for a couple days, they would all call me, to get my behind back to up there to look after mom, I was her POA.  One of my nieces would help me out, She would say Aunt Pam, funny thing no one wanted to help with Grandma, until you stepped up to the plate.  I said Shelly mom can't go home and stay safely in that house anymore.  That house is in my sister name and my aunts name in Florida, and mom's is paying the bills on it, but mom's health is to bad now, and assisted living is taking her social security check and that is all she has, except for life insurance made out to funeral home with my sisters name (the one from Fl) on it. 

To make a long story short I drove 100 miles back up north to get mom ( I had just gotten home from being up there) I asked the nurse to take mom home with me (to Greenwood 100 miles south) for the week end, nurse said Ok, so I loaded her up with enough pill for 4 days.  Next day I put her in a local hospital (close to my home) then a couple weeks in nursing home (close to me), then home with me.  We never took mom back to Marion, she got better & lived one year, on her own in a retirement center, a mile from me. Then mom had a stroke a year later, & lived one year in a nursing home, she fell on Thanksgiving, broke her knee had a bleed and that was the end. 

It was so sad that for those 3 years of caring for my mom, I was continually harassed by my sibling, for everything under the sun.  I could give you a long list, but I won't. Even in my small hometown, my sibling were saying so many lies, like I took mom's money.  Mom had no money except for a little social security, her life insurance was made out to the funeral home with my oldest sister name on it.  Hospice social worker said this often happens when one person is sole caretaker, to relief the guilt of those who are NOT doing their share, or who are able to help and have excuses why they CAN'T help, so they take it out on the caretaker (me) and find reasons to complain.  It was awful!!

My mom's sister and husband, now gone to heaven .  they also lived in Florida.  My oldest sister lived a couple block from them.  Aunt Nora and Uncle Bob would say " Pammie God is going to have a special place for you in heaven."  Would I do it again? I don't know ( I doubt it, as I sometimes wonder, if that was why a year later I was dx with CML, the awful stress of being a caretaker and dealing with family members).  The pain and scars that were left on my heart, will never go away, I forgive them, but I will never trust them, or love them like I did, it was horrible.  I send them cards, see them on occasion, and tell them I love them, but I have my boundaries, they will never get a chance to humiliate me like that again, with all their accusations. I mean come on even to point of sending someone to my home that I wasn't taking care of my mom.  Funny thing in the end my siblings went to the hospital (mom was dying) and tried to get the ambulance personnel to take mom to Marion, they begged mom to go back home to Marion to die, and she refused, she stayed close to me, as she knew I and my husband always took good care of her.

Any compassion for me,  from my family, when I was diagnosed with CML was next to none.

I have a few friends and people from church, and maybe a neighbor or two that care, but most don't like to talk about cancer, especially family!!  Now family does expect me to listen to their troubles and aches and pains.  Strange my younger brother of two years.  Has had quad heart by-pass and 3 defib, I am one of the first he calls when he heads to St Vincent, to pray for him.  The last time I was not well and did not make it to the hospital to see him.  But he is home now. Yep they all call me when they are in trouble, strange isn't it, and I sympathize with them and pray for them and tell them I love them, what else do you do!!

Sorry this was so long, got to rambling and brought up old feeling as a caretaker.  Be careful caretaker, it doesn't take your own health down, because with out your health you are not good to anyone.  Remember when you get on the plane, the stewartress says put your own oxygen mask on first!!

PamSouth