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Anyone else never get sympathy? Lol


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#21 GerryL

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Posted 09 March 2012 - 10:23 PM

Hi Missouri,

I was a care giver to my mum for about 10 years until she passed away - I don't think other people understand the stress it puts you under particularly when you need to do this long term. For me the only people among my friends that really understood it were people that were care givers themselves. It is 18 months since I was diagnosed and I am doing really well with limited side effects (touch wood) to my TKI and apart from close family, it is these friends (who were care givers) that take the most interest in how I am going nowadays. One of these people has just had a kidney transplant so I will be looking to help her out where I can, particularly as time goes on and other people return to their own lives.

Make sure you take care of yourself. (((hugs)))



#22 pamsouth

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Posted 09 March 2012 - 11:34 PM

GerryL wrote:

Hi Missouri,

I was a care giver to my mum for about 10 years until she passed away - I don't think other people understand the stress it puts you under particularly when you need to do this long term. For me the only people among my friends that really understood it were people that were care givers themselves. It is 18 months since I was diagnosed and I am doing really well with limited side effects (touch wood) to my TKI and apart from close family, it is these friends (who were care givers) that take the most interest in how I am going nowadays. One of these people has just had a kidney transplant so I will be looking to help her out where I can, particularly as time goes on and other people return to their own lives.

Make sure you take care of yourself. (((hugs)))


PamSouth


#23 pamsouth

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Posted 09 March 2012 - 11:44 PM

Pam wrote:

GerryL wrote:

Hi Missouri,

I was a care giver to my mum for about 10 years until she passed away - I don't think other people understand the stress it puts you under particularly when you need to do this long term. For me the only people among my friends that really understood it were people that were care givers themselves. It is 18 months since I was diagnosed and I am doing really well with limited side effects (touch wood) to my TKI and apart from close family, it is these friends (who were care givers) that take the most interest in how I am going nowadays. One of these people has just had a kidney transplant so I will be looking to help her out where I can, particularly as time goes on and other people return to their own lives.

Make sure you take care of yourself. (((hugs)))

Gerryl

"I want to remember your comment it is these friends (caregivers) caregivers who take an interest and care."

After all who would really get it except another caregiver.

That is really gracious of you:

      Regarding  "One of these people has just had a kidney transplant so I will be looking to help her out where I can, particularly as time goes on and other people return to their own lives. ""

I think that is how I must find logic in my mind in that, perhaps others can not deal with sickness or being around sick people.

I see you took care of your mum for 10 years, I was just wondering when your mum passed away. and how long after that you were diagnosed with CML?

My husband and I looked after my mum for 3 years and when, one days you would swear it was her last then she would rally around.  It was a 3 year roller coaster of highs and lows.  Still when she died I grieved terribly she had become my life, in looking after her.

PamSouth


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#24 Tedsey

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Posted 10 March 2012 - 05:24 PM

I get it.  Sunshine and rainbows....Keeps people comfortably deceiving themselves that nothing will ever happen to them and they will live forever.  It is the great misconception of those yet unscathed by life or people in chronic denial.  It is also a misconception that instead of within 2 hours (an avg. major motion picture length), that cancer often takes years, or decades to do its victim in.  (So, instead of kicking the bucket at an avg. age of 78, some may expire at 20, 30, 40, 50, 60 whatever.  As our docs tell us, we are lucky (sunshine and roses).  This disease in chronic (slow moving---only 5 years if untreated!!!!!!  What a bargain!), and we may live longer than most cancer victims (sunshine and roses again---I don't know about you, but at the talked about 30 years on TKIs, if I get that long, I will still be considered pretty young--doesn't quite make me feel like I won the lottery).  In my opinion, this either shows, A: Since you look OK, and won't die tomorrow, and lucky for you they have a pill for that, we can all forget about it because thinking of someone who is just like me or "close to me" dying is way too hard to handle, so I rather not.  B: This brings brings out someone's true character and the sad fact that they do not own the stuff that kind, compassionate, and empathetic humans possess.  Time to find a crowd, or a few that have these characteristics.  And sadly, it may not be most of the people in your life.  It can be very hard to accept this and mourning the old perception of some of your friends and family takes some time.  Therapy helps because we cannot change them, and it is depressing.  BTW, most Ph.D. and so on candidates report and discuss their cases with a certified psychologist, or the like.  Some are actually very good and are worthy of their study.  It is just important to find someone you feel comfortable talking to.  I am sorry if you had a bad experience before.  I have had quite a few, but I kept on searching.  And I actually found a few very good therapists that I could afford, but it can take some time.  I am here too if you ever want to talk.  Complain away.   

Please take care,

Tedsey      



#25 Tedsey

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Posted 10 March 2012 - 05:41 PM

I would LOVE to see my husband bake a cake (hee, hee).  Otherwise, he has definitely risen to the CML occasion.  I am so sorry to hear how wiped you you have been.  For whatever my respect and admiration is worth, it continues for you!

Teds 



#26 Tedsey

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Posted 10 March 2012 - 06:42 PM

It must also be truly difficult for someone who cares for a loved one who is suffering or in need of constant care 24/7.  My siblings, father, and I took care of my mother until she died (she had a chronic illness that left her bed-ridden and unable to take care of herself for decades).  It is a very different kind of life and reality very few can understand.  I hope you feel heard here and find support.  Sadly, my father never found support.  As children, we grew up with it, so in many ways, it was easier for us.  But experiencing both sides of the situation, I feel deeply for both sides.

Tedsey



#27 Tedsey

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Posted 10 March 2012 - 07:06 PM

Pam,

I am so sad for all that you had to endure.  You are always so compassionate to others on this board.  When life hits you with all kinds of crap, it either makes you meaner or kinder.  Clearly you have risen above it.  I understand the stress.  I always wonder if that is what triggered my immune system to collapse and allow the CML to take control.  It appears many of us have had exteme stress and painful events in our lives and some of us many times over.  I think my body just couldn't take it any more and broke down.  Of course I am sure there are other things that cause CML to occur, but I am sure the almost constant stream of unlucky and stressful events in my life didn't help.  If this makes you feel like there are others like you, you mentioned that your siblings send someone to check up to see if your mom was not being abused, anyway, my aunt threatened to get a restrainin order against me or sue me if I ever told my grandmother I had leukemia.  She said she would do anything in her power to keep me away.  My grandmother (who is now 95!) and I were once close.  After I was dx, I was unable to see her like I used to.  When I would call, she would cry to me that she was going to die soon and that she felt like I was neglecting her.  This really tore me apart inside that when she dies she would think I was so bad to her (she adores my son).  However, I had to get over it.  My aunt won't even talk to me and avoids me whenever I see her at some event.  Not quite sure what I have done.  My crime was getting cancer, I guess.  It is a blessing we have this board.

Teds   



#28 Tedsey

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Posted 10 March 2012 - 07:38 PM

Gerry,

I feel for you too and what you have been through.  And you have always been so kind.  I think this original post must have touched a sensitive spot in me (hee, hee,).  Anyway, I learned a new word recently in therapy.  It is called "reciprocity".  Not rocket science, but it was a great revelation for me.  I never really thought about it before CML.  I think reciprocity is the most important thing in any deeply meaningful relationship.  I think it is the lack thereof when it was expected that some of us are talking about.  And as you know, it is not always the big things, like your friend who just had a kidney transplant.  As you and many of us expressed, most things in life don't just end after the main event.  We need to be there after the show.

Glad you are doing well,

Teds 



#29 GerryL

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Posted 10 March 2012 - 07:40 PM

Hi Pam,

I was diagnosed a year and a half after my mum passed away. I was in the very early stages and it was only that I chased the doctors up about my blood test results - they weren't concerned about what it was showing.

For me I believe that our bodies pump out incorrect cells every so often, my body was off dealing with the effects long term stress causes and in the meantime these faulty cells started replicating themselves. I try to manage my stress levels a bit better nowadays so my body can concentrate on working with the TKI to beat the CML.

On a "heaven works in mysterious ways" note - my brother who had avoided helping out too much for most of those years, wound up having to move in with me and help care for mum for the last nine months. He now works in aged care and is looking to do pallative care.



#30 GerryL

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Posted 10 March 2012 - 09:04 PM

Hi Teds,

Being involved in the care of your mum from an early age must have been extremely hard on you. It also gives me a deeper understanding of the concerns you have of the impact of CML on your own children.

I think most of us do do what we can and it can be to a greater or lesser degree than what others expect from us.

On a good note - I just rang my friend in hospital (she asked that only family visit her for the week), she will be out of hospital tomorrow. She has a good support group amongst her family, so I will see what I can do once she has a routine at home.

It's great that you are getting more words to put in that book that I hope you will write one day.

Wishing your figures continue to drop and your side effects lessen.



#31 pamsouth

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Posted 10 March 2012 - 09:14 PM

Tedsey, 

Thank you for sharing.  Actually it made me feel a lot better listening to your story and others.  It is something that I keep to myself for the most part, except for this board,  as it is an embarrassment and feel like a bad reflection on my character. I have went over it in my mind so many times. 

I am a Christian and I don't think God wants me to continually beat myself up, of why the family did what they did, and why they ganged up on me, with lies and sarcasm, and slander,  and broke my heart and spirit.   When me and mom needed their support  the most.  But now I have heard so many other stories of care takers.   It seems like there is always one who will take the responsibility and the crap that goes with it.

Well I have been learning to take what I can and leave the rest.  Maybe not totally cut them off but I think boundaries are important.  Also it is God measuring tape and His Love that defines me not them. Was I perfect No, because none of us are.  Did I go beyond the call of duty and them some, a resounding YES!!  Did I deserve the way I was treated NO!!  Yes I will forgive them for my sake, but I have boundaries, otherwise I would be their victim.  I have to think of the stories of Job and Jacob, Issac, Moses, etc. The focus and mark is on God and to finish my race here and hear Jesus say Well Done!!

Now I just take what I can have and leave the rest.  My grand kids are growing up and I don't seem them often.  My grand Daughter Erin was 21 year old yesterday, I sent her a card and a phone call.  I didn't know what to do as last year, I sent her two checks and 1 was lost. I think perhaps her mom, my daughter lost it as she was mad at me, but that would be speculation.   So I said sweet Erin when you are home on College break, I want to take you out to eat or somewhere and buy you something special to remember me by.  I want to spend the day with you and find out all the wonderful thing about my most beautiful Grand daughter.

My (grand daughter) Erin looks nothing like her other two sibling.  She is the only one who has my dark eyes.  Yes she has huge black eyes. with dark chestnut hair, a few freckles and a smile as big as Texas.  She graduated from Roncalli H.S. a prestige catholic school, all though she is not a catholic. She is in her 3rd year of med school at St Louis Mo Univ.  In the summer she works for her father who is a GI doctor.  She is beautiful, smart, wise, and most of all, she is a charitable, compassionate, young women.  She is a gem, I am proud that she is part of my legacy.  So there, God has given me great things and that is where I should park my mind.  Why is that I would waste  my health and energy on things that have no meaning anymore that are gone, that only hurt myself.  Well  I can tell you after talking to my grand daughter today, I felt so ashamed, here God had given me a wonderful legacy.  I need to remember my blessings!!  I need to stop grumbling and feeling sorry for myself.

Blessing PamSouth


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#32 pamsouth

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Posted 10 March 2012 - 09:22 PM

Yes Gerry,  I am just now discovering in so many different ways, that yes indeed "That God Works in Mysterious Ways"  Sometimes it is strange how things turn out in the end.  The story is not over.

PamSouth


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#33 Judy2

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Posted 11 March 2012 - 01:50 PM

Hi Teds, GerryL, Pam S,

I'm sitting here reading your posts and I want to express to everyone how sorry I am for all that you have gone through and all you continue to go through. There is so much I would like to say to try and comfort all of you but I am having a very difficult time posting my thoughs due to brain fog. Everyone has been so good to me and I feel very bad that I'm having a hard time offering more support right now. I hope you all understand that I am thinking of you, care about you and wishing I had more to offer.

Judy



#34 GerryL

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Posted 11 March 2012 - 05:56 PM

Hi Judy,

It is all good - my mum passed quite quickly, overnight in hospital. I never felt any guilt at her passing as I knew I had done the best I could for her. Together we managed to keep her out of a nursing home and I was able to keep working full time. I was blessed in that she had all her faculities though she lost her hearing quite badly near the end. I'm not sure that I would have coped as well if she had dementia.

Thank you for your kind thoughts.



#35 pamsouth

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Posted 11 March 2012 - 10:36 PM

Judy2 wrote:

Hi Teds, GerryL, Pam S,

I'm sitting here reading your posts and I want to express to everyone how sorry I am for all that you have gone through and all you continue to go through. There is so much I would like to say to try and comfort all of you but I am having a very difficult time posting my thoughs due to brain fog. Everyone has been so good to me and I feel very bad that I'm having a hard time offering more support right now. I hope you all understand that I am thinking of you, care about you and wishing I had more to offer.

Judy

Hi Judy2,

Have you talked to the doctor about the brain fog? I think Scuba is on 20 mg Sprycel.  Does your onc think you can eventually lower your dose too, and maybe you won't have the brain fog, or maybe it will just take time? I know it is bad to deal with it.

I do remember that first year I was on Gleevec, brain fog and my balance were terrible.  I was almost afraid to go anywhere.  Sometimes when I would complain to my onc would, she make me feel like my imagination was working overtime.  I think perhaps my complaints were ignored, because well what you going to do?  Gleevec was the only thing out then.  So when I constantly complained, it was always, the onc saying things like; "with a bright sunny smile, aren't you looking wonderful today or I love that necklace"   things like that.  you always got the impression she didn't want to hear the complaints.  ( that is until last year when she wanted me to change drugs, then her hole tune changed, aren't we  tired, etc? Then I would think hum you never listen to me for 6 1/2 year now you think I look tired!!  It always made feel like I was crazy or imagining things. I would rather she had said lets hope it goes away with time, if not maybe there will be another drug coming out, other then just brushing it off like I was just a complainer.  It sure was NOT easy that first year on Gleevec.  That is why I hate to change drugs, now, they all have their demons.

I think that it would be fair to say whatever drug you are taking, you are going to have some toxicity at least for awhile.  I just feel at 64 years, I would hate to go thru all that again. In fact it causes me a lot of stress, just thinking about changing med's. Sometimes I think if I have to change med's I would just rather, say hey forget it, I'm taking nothing. and just go out and live what life I have left and feel good for awhile.  But then reality set in and that gets pretty scary, all though I am not far from it.

I am so glad I will be on Medicare next January, Blue Cross of Mi UAW sucks!  People complain about Medicare.  I tell people it is kinda like this.  Yea I get insurance but we pay cobra, are deductible and copays go up every year and we pay premiun, and my husband medicare is better then mine.  I kinda like until you have a catastrophic illness you don't really know how good your insurance is.  Not to mention that you have to spend hours on the phone to the insurance company with dispute and refiling claims.  That Is another reason I would like to wait until next year before I even entertain the though of changing meds.  My husband is on Medicare and we have never had to dispute a claim.

Well actually I am feeling pretty good today and doing a little house cleaning and it is warm out with the sun shining. In fact My Gleevec prescription does not expire until June, so I am not even going to worry about going back to the oncologist until then. 

I will be praying for you brain fog to lift, soon, and for you to stay safe.  It is hard to adjust to all this. 

Thanks for always having something kind to say to others, while you have your own battles.  You are a blessing to many.

Hugs PamSouth


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#36 Judy2

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Posted 11 March 2012 - 11:11 PM

Thanks Pam S. for your very kind post, it means a great deal to me. I'm glad you had a good day today and with more spring weather on the way I'm hoping you will have many more. As for stopping your meds if you had to change, well, you can forget that. Everyone on the board would get on your case and it would probably be easier in the long run for you to take a different med that be harassed by all of us. Also, if you ever had to switch meds it might not be that bad. I find Sprycel 50mg a lot easier to take than Gleevec 300mg or Tasigna 600mg. If you do stay on Gleevec once it goes generic the insurance issue should not be as problematic. Even with medicare and the best medigap policy the co-pays for our TKIs are enormous so Gleevec going generic should take some pressure off.

My brain fog just started rolling in about a week or so ago, next time I see my onc. I will talk to him about it. I just started on Sprycel 2 months ago and my PCR is still elevated at 27.1% so there is no way I can reduce the dose now.Thanks for the thought, though. I do have to say my onc takes all my side effects seriously, he never glosses over them. I am lucky like that.

Anyway, I' hoping you have another pleasant spring day tomorrow.

Judy






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