Just a little peeved and sick of it

[cherylynnie]

Most of the time I come to this site and read the many things that are posted here and I shed tears. I thought I was done for the morning, but I just read what Tom wrote and again tears streamed down my cheeks and my nose started running, had to go dry my tears and blow my nose.

But after we have catered to them for so long, our families that is, sometimes they just don't know how to do it back, not for any length of time anyway. I was very lucky that my mom came right away and stayed for four months and packed lunches, made breakfast, did the laundry, cleaned the bathrooms, and ran the kids around and took care of me, etc. An amazing thing happened, other relatives came to help her, my sister, my aunt, another aunt and uncle, a cousin, my mother in law. Anyone that came once chemo started got a flu shot. I was truly blessed, but it was the love of my mother I think that brought those others out to help me. Now mind you her actions and words didn't always go together, her actions being better than her words. I am not close either, the shortest drive was 3 hours, which was my sister and mother-in-law everyone else came from another state. SO she had six weeks of help, I had an immediate tram flap reconstruction after mastectomy, so finally right before chemo I was actually able to walk almost upright. My mother left and went back home in January. So I got to go back to being mom again and trying to do everything ( this was all while taking the taxotere which I just finished the middle of March), and about after two months everyone (2 kids and husband), started to take me for granted. I had to let them know how I felt. My husbands seems to have gotten on track, but has to be reminded every now and again. But I think the kids just wish it would all go away. And as my hair comes back (very slowly), they will be able to look at me again for who I maybe once was, but never really will be again as cancer has changed me, I am not sure to what yet though.

But Sherry, you are definitely not alone.

And I know how you feel about the " anyone dying any day" thing. That is so insensitive, and people just don't realize it, no matter how true it may be. But when you stuggle with a disease, it is a more in your face kind of thing.

You hang in there! What's the song they play when they kick someone off American Idol, oh yeah, - Had a Bad Day -. But you will have better days!

My heart goes out to you.

[marymary]

Wow, this is something we all struggle with every day. For me cancer has really been all-consuming. I try and try, but somehow it's just there every minute of every day. The beautiful becomes even more so, the trees are alive and breathing, the birds are living, singing spirits. The thought of disappearing, a little each day and ultimately having to leave the party early, never goes away. I think anybody who doesn't want to hear about it and preaches about having happy thoughts hasn't, obviously, been where we are. Sometimes the devil on my shoulder even wishes they could be, just for a day. That would surely wipe the sunny smile off their smug faces.

Anyway, I read something recently (gotta love those classics!) that really spoke to me. It made me realize that these are timeless struggles that we grapple with every day.

"Look, one day I had gone to a little village. An old grandfather of ninety was busy planting an almond tree. 'What, grandad!' I exclaimed. 'Planting an almond tree?' And he, bent as he was, turned round and said: 'My son, I carry on as if I should never die.' I replied: 'And I carry on as if I was going to die any minute.' Which of us was right, boss?"

He looked at me triumphantly and said:
"That's where I've got you!"
I kept silent. Two equally steep and bold paths may lead to the same peak. To act as if death did not exist, or to act thinking every minute of death, is perhaps the same thing. But when Zorba asked me the question, I did not know.

"Well?" Zorba said mockingly. "Don't worry, boss, you can't argue that out. Let's talk of something else. Just now I'm thinking of the chicken and the pilaff sprinkled with cinnamon. My brain's steaming like the pilaff. Let's eat first, ballast up first, then we'll see. Everything in good time. In front of us now is the pilaff; let our minds become pilaff. Tomorrow the lignite will be in front of us; our minds must become lignite! No half-measures, you know."

Hope you like the passage as I did.

Mary

[kk1]

Al I know you are hurting but you will heal enough to realize that it is not now nor never will be " really gone"--that my friend is the miracle and wonder of true Love

"I am standing upon the seashore. A ship at my side spreads her white
sails in the morning breeze and starts for the blue ocean. She is an
object of beauty and strength and I stand and watch her until at length
she is only a ribbon of white cloud just where the sea and sky come to
mingle with each other. Then someone at my side says, "There! She is
gone!' "Gone where? Gone from my sight---that is all. She is just as
large in mast and hull and spar as she was when she left my side, and
just as able to bear her load of living freight to the place of her
destination. Her diminished size is in me, not in her and just at the
moment when someone at my side says, "There! She is gone!" there are
other voices ready to take up the glad shout, "There! She comes!" And
that is dying. --

[rinaina]

just had to write to express how nice it was to hear what both Al and Tom had to say and you better believe that I will be having my wonderful hubby read their posts. he has been very supportive going to every appointment with me so far but he isn't very expressive emotionally and sometimes us women just need to hear things. I can so relate to what was said by some about how at times the tv seems more important or playing golf is more of a priority, etc, but that doesn't mean they don't care. Some just have trouble putting it into words or wanting to because it makes them too sad to think so much about it. In my case, I know he cares very much even if he doesn't like to talk about it. It is too difficult for him to think about it and talk about it, but I know I can count on him. Al and Tom you are both two very special men.
Now about this weight gain issue. May I please complain about how bummed I am that I will be gaining weight from treatment! Darn right angry over it too. I work so hard at staying in shape and still am not at my ideal weight by no means and now I am going to gain even more weight! Geeeezzzz, losing hair is nothing, we all get it back but the weight gain....now that is a serious problems and it sounds like it doesn't come off that easily. Any feedback from other members? Thank you..
Rina

[Sheila]

Rina
I have gained 20# and wish I new the magic to take it off...I exercise, eat healthy, I dont know if its the medicine or more age and hormonal related...I am 54. I don't like it either, and have to hear about it from my spouse, but I feel its a small price to pay for my life... so goodbye 6's and hello 10's....jsut need to shop more I guess, and that would be the good side.

[rinaina]

just wish i knew for sure why you gain the weight.

[Sonja]

Sheila,I hear you with the 20# weight gain. I was diagnosed in 1999 with ulcerative colitis and everytime it acts up on me, I have to take cortizone to stabilize it. I take the cortisone and gain 5#! So between my quitting smoking in 1995 and my colitis I have gained a total of 40+#! And now the onc says to expect to gain 'abit' more weight?! I'm top heavy - take a size 16 on top and 14 on the bottom.....!
Oh well, I will do anything to get healthy! Tomorrow is my big day so I will be able to give you some more news about the weight gain in the future!

[Sherryg683]

Wow, where can we get Al and Tom cloned, you two guys are every womans dream. Tom you have been such an awesome son to your mother, it touches my heart to see how you have fought for her and stand by her side. I have told you before that if my son turns out to be half the man you are, he will have done me proud. And Al, your post made me cry. Linda was truely blessed to have you here with her till the end. I know you miss her dearly and I am sure she knew how much you would miss her. I wish more of us could feel that way. My best friend, who was a wonderful woman, died at 40 of Colon Cancer. Her husband hit on another of her good friends a month after she died. He was dating seriously 2 months after she died and was married again before the year was up. He told everyone he did his mourning while Susan was ill. I just thought this was horrible and was a terrible example for his 2 teenage sons. I have told my hubby that if something happens to me to at least give my memory some respect, I honestly think though that he would be dating and married again soon. I was at my nephews high school graduation tonight, my son graduates next year. I found myself wishing it would get here soon so I could be sure to see him graduate. Then I looked at my little angel of a daugher who's 7 and felt like I wanted to cry, I have got to get at least another 10 years out of this damned body of mine, I have got to be there for her during those teenage years. I hate this disease and the uncertainty that it dumps in the middle of your life...sherryg683

[Tom]

Dear Sherry,

Thank you for the kind words about Al and I. But one thing I have learned in my 50 years on planet earth is this: The more deeply you love, the more devastating the loss, whether it be through death or just a simple relationship parting. I think Al will agree that it is a heavy price to pay, but worth every minute of the time spent enjoying the indescribable feeling of giving yourself completely to someone. It is, of course, somewhat different between a child and parent, than between spouses, but still intense in it's own way. Occasionally, my Mother still responds verbally when I tell her I love her, but I have known that she loves me since before I was able to speak.

I think that Al is suffering in a particularly painful way, as he has lost his lover and best friend. I never married, and often wish that I had, but it is times like these that I wonder what it would be like to endure such a loss. I think that perhaps the fear of losing someone so close and so important, is what produces some of the "cold and distant" aspects of a family's reaction to the woman's diagnosis of cancer. I guess everybody deals with it in their own way. But if they would just remind themselves daily, that it is the woman who is sick, scared, and has the most to lose if the battle is not won, they might be able to temper their response to the illness more easily.

I know how I felt in 2001 when I had a cancer scare myself. You feel as if you have 10,000 things that absolutely must get done, but have only been given until the end of the week to finish. I was never as frightened of anything in my life. It ain't pretty.

So again, I ask the families of those who are fighting this to reassess their positions, their fears, and their priorities. Be there completely for your loved one while you have the chance. Life is short, and sometimes the journey is rough. But it beats the alternative of being alone.

Sincerely,
Tom

[al from Canada]

I don't want to dwell on this stuff because a), I don't know if it's that healthy and B), I think I've said too much already. BUT....

When Linda got sick we asked: who do you want to spend the rest of your life with? we know that answer.
From that day on we recovered the kazoom!!!, the infatuation, the bliss. We never really lost it in the first place but the intensity came back.
Being in a life threatening situation, we had to bond closer because we both knew that neither of were strong enough to handle it ourselves. If we hadn't bonded (almost felt like imprinting), we might have been blown apart. The chain is only as strong as the weakest link....just make sure it isn't you or your partner/ support system.
My heart really breaks for the ladies who have to face this struggle alone. or even worse, those who were abandoned because of their diagnosis. We all need a reason to live and if we can help by advice, referral or intervention; that's why this support group exists.
Don't get hung-up on the disease, focus on life!
Al