13 replies to this topic

[markmendonca]

i am having a hard time with the sharp pain in my sides i think its my kidneys i am going to call my doc  on monday..i did a bcr - abl test... my doc called and told me that it looked good . she told me its like if i had100% cancer cells when i started and now it came back 0.19% they say its great news ....but my wife is giving me a bigger problem she has told my boys that are 23 and 24 years old that as long as i take my meds i will be fine.... god i hope so ... they look at me when i say i am so tied my wife thinks what i have is like a cold just get over it //// this is so hard for me i am at the end of my rope....is so hard to think that my wife that i have been with from the age of 14 years old and we are 42 years old now..... we had our frist son when we were 17 years old ,.... for me to movie on now and be alone makes me scared...... what to do?????

[Skittles]

Hi Mark,

I am so sorry you are going through this because having CML is difficult enough.  I do not know about the sharp pains but it is probably a good idea to check with your doctor.  It might not have anything to do with CML.  Try not to worry too much and get it checked out.

Is it possible your wife could go with you to your oncologist appointments?  My hubby comes in with me so that we both get to know my oncologist and so that we both hear what is being said. He reads every report I do and maybe even more sometimes. Perhaps if she went with you and listened to the doctor as well she would realize that CML is a serious condition.  I hope this suggestion helps. 

Best Wishes Mark, Skittles

[Lizzybee]

Would your wife be willing to do some reading here to learn about CML and the side effects of the meds?  I know that compared to other cancers, we have it pretty good in some ways, but it's still hard.  I am working about 45 hrs a week and I am plum worn out; all I do is work and sleep.  Thankfully, my dh is very protective of me and picks up the slack.  I think one thing that helps is that my onc acknowledges the side effects and even has a nurse who does nothing except help people on oral chemo gets their meds and manage their side effects. My onc also told my dh when I was first diagnosed that I was not to do housework etc until I started feeling up to it.  If you have that kind of onc, it would be good for your wife to go to some appts with you.  Finally, if either or both of you is willing, I would suggest talking to a counselor to help you work through your feelings together. It's a pretty stunning life change to find out you have cancer and it's important for you and your wife to be able to support each other through this.  I'm sorry you don't feel like your wife is being supportive and I hope you can work through it. 

[markmendonca]

thanks  allways .. she doe's come sometimes but as u no how all doc. say { you are doing fine .take your meds and u will be ok }  she here's things like that and tells my boys this has become a big problem in the trip of CML   i have to think about what to do.

[markmendonca]

liz thanks i am hoping that i can figer this out soon i dont want to do something that i will be sad about late.. but its not helping me now..

[susantheresa]

Hi Mark,

As the others said, talking to a mediator(transplant coordinator) can lead you both to someone who is trained in these matters. Donot carry these feelings around alone because you need your strenght to carry on with this journey. There were times when I wanted to just shake people silly but what I found was that I expected more from others that what I was receiving.  But, how did I realistically expect something from others when I wasn't asking for what I really needed.  Maybe I thought everyone was Kreskin the mind reader.  Funny how that didn't work out for me.  It was only when I asked, did I receive. Ask and you shall receive, knock and the door will be opened, seek and you will find, pray for what you need, not for what you want.  susan m

[markmendonca]

thank you susan... she is not understanding we talk it get's better then she starts agine . i feel like i got cml and it changed it all....  i no this i would never do this to her thank's u all r great...

[Judy2]

Hi Mark,

If it would be helpful you could have your wife private message me and I could talk to her about what it is like to have CML. It might be helpful to hear what it is like to deal with this disease from an outside person, someone who is not a member of the family. It might give her a different perspecitve. Just a thought.

Judy

[markmendonca]

judy I can only say one thing to you. god be with you.... i thank you for wanting to do that for me that sounds great but i think at this stage were we are its not the right time...but if i can keep you in mine and have you talk to my kids that would open there eyes.. my kids don't understand.. i was all was on the go work work 8 hrs i own my landscaping company worked all night..they see me sitting after i do  a little work. they dont get it i am not the same guy.. and it kills me i get so tied fast my bones hurt...and i feel i am losing wife and my kids. this cml means nothing.... with out my kids y movie on

[hannibellemo]

Hi, Mark,

Here is a link to a discussion going on right now about the very thing you are asking about:  http://community.lls...tart=0&tstart=0

You aren't alone in this problem.

Pat

[susantheresa]

Hi Mark,

i was just wondering if you had ever thought about just sitting your Sons down and just tell themhow you feel? tell them that the medicine is just kicking your butt. for now thats howcome your so tired and that your HOPE is that it isn't always going to be this way? Instead of trying to spare other peoples feelings and leaving youself shortchanged because you are keeping everything inside, just sit them down and tell them, Even if is just the three of you.

I want you to know that there is support for you not just here but somewhere in your community. I joined Gilda's Club and it was the best medicine for me.  Go online and type in www.gildas club.com and the link will ask for your zip code and direct you to the clubhouse in your community.  Mine is about 10 miles away.  You only have to sit through a 2 hour orientation.  They have so much going on there and they have a great program for MEN  who are dealing with all types of cancer.  The're programs are broad in range and offer support groups for men, for women, for men and women, discussion groups, pot luck dinners, lunches, arts programs, so much to list and all of the'yr programs are monitored by psych social workers.  The programs are FREE, always. and, you can go and sit there anytime and they always have food, snacks, cofee, soda and there is always someone to talk to.  I can tell you that 7 years after my transplant, I still go and have made some of the best friendships that I cherish so much. Please look in to it. I promise that it will help. Susan M

[pamsouth]

Susan, I wasn't able to pull up www.gidas

Pamsouth

[susantheresa]

Hi Pam,

Hope all is well.  I tried to get the link but it is www.Gildas Club.com. Google it and the clubhouses come up by state.  On one of there links you may be able tofind a clubhouse (thats what they call the club)easier.  If you want I can call mylocal clubhouse and find out where there is one in your community for you.  What state do you live in?  Susan M

[Lizzybee]

Mark, I have a blog where I've talked about the effects of CML and tasigna.  Maybe if your wife and kids read it, it would help them realize you are not lazy or unmotivated - it is called cancer fatigue!  The link is www.myleukemiajourney.blogspot.com.