Things I miss...

[Stanfordmom]

Richard,
Your paragraph about you and your wife brought tears to my eyes.

I also felt that my husband and got much closer after my diagnosis. before with two careers and two kids, we hardly had any time to talk. When we talked, it is usually all about kids.
After my diagnosis, I have been on disability from my company. I got to spend a lot more time with my kids and my husband.

but of course, I also miss so many things I could not do anymore: lying on my stomach, getting a Swedish massage ( as you need to lie down), travel, wearing bikinis, a good night's sleep without drugs (ativan), nonpainful sex, and etc. we have no choice. It is either this or die. We got dealt with a very shitty card, and if we are lucky to become one of the long term survivors, we will still never be the same "me" anymore. I have accepted that and sort of moved on

Sha

[jillbugs4110]

I should also include what I have gained through my cancer journey.

My wife (married 20 years on May 20th) and I have become so much closer. She is the best caregiver I could imagine having. She puts me first in everything. I thought I knew love, but she has shown me what true love really is. Her life revolves around me. I didn't ask for this, but she gives unconditionally. I would give up my life for her this very instant if called upon. This may sound crazy, but I want to get better for her sake more than my own. She did not sign up for this crap, but she faces it daily like a hero. I couldn't repay her in a thousand lifetimes. I would do chemo for the next 20 years for her. She deserves it!

Richard

This is.lovely and it is our only true gift in life....

[KWT]

I wouldn't know where to begin.
Building customs in the sierras.

Climbing trees with heavy stuff

Going Climbing At a moments notice

And a relaxing ww kayak run

[Willow.NZ]

My family are feeling what you describe. My Mum simply put it the other day 'It feels like cancer has robbed our dreams'. She longs for the days where they were just working hard and planning awesome holidays and loving life. Chemo has got tougher for my Dad lately - he used to say he had a good week and a bad week, but these days the chemo comes around way too fast and not as many good days between. But I suppose we should be grateful that he still has those good days. We all just have moments where it just feels really crap... My Mum got really upset at Chemo last week when she met and supported a lady having a really rough time. Her husband was at a loss of how to comfort or help her. You sound like you are blessed with an amzing partner.

[midlifemom]

Willow,
Your comment on giving up dreams made me remember this poem, which written about having a disabled child, could still appy to any of us.




WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

[KWT]

Willow, when will you're dad get a break from chemo? Maybe it's time? I agreed to four rounds of Folfiri but at that point I'm taking a long surf break. I can hardly take the bad week let ilalone if it runs into two which with this drug is how it feels I'll end up.

[ktwmn]

Yeah, this stuff is evil. I get a 1-week furlough cause I told them I had a meeting I needed to attend without the pump in tow.

[Willow.NZ]

That poem was so insightful - I am a nurse who works with babies and have not come across it - i will save that one -= Thank you. Dad commenced his Folfiri soon afer diagnosed in Sept 14. He has it 3 days per fornight and they plan that for 1 full year (does that mean 26 cycles?)....Dad has Raratonga in his sights for September, all going well... He was getting increasingly worse the last couple months with side effects of nausea/vommiting (and still recovering from op). Last round was alot better though. They tweaked his cocktail of antiemetics and much improved, so not dreading the chemo quite as much. I hope that continues. Surfing break sounds awesome and something to look forward to. We are just getting into winter here in NZ, although mild I'm already wishing summertime at the beach!!

[jalusa]

I miss my clear mind. I was diagnosed in December of 14. Each and every waking moment is now filtered through this stupid cancer. I have heard that with time I will get used to it. I hope so. I admire the people here that manage to carry on fairly normal lives in spite of dire circumstances.

[PainInTheAss]

I miss my butt.

I do miss many other things, but I actually found myself thinking this the other day. I lost a lot of weight during treatment and my butt was flat and wrinkly and just looked terrible. I've gained the weight back and it still doesn't look good. I'm guessing it's from the radiation shrinking all the muscles. I used to have a nice, full head turning butt. I remember when my youngest kids were around 10 they started to notice that men kept looking at my butt when we were at the mall. They said, "Mom, why do men keep looking at your butt?" I said, "They can't help it. It's like how dogs have to smell your butt. Men have to look at it." She just said, "Oh," nodding knowingly. She then informed me of every man she saw looking at my butt, fascinated with this behavior poking my arm and whispering, "That man just looked at your butt." She was the butt looking police. When she was a teen, she was very excited to see the first time a guy looked at her butt! "Mom! Mom! Guess what!" It's was very cute. Those days are gone for me.

But, hey, my boobs are back! Woohoo!

I've also noticed that without my ovaries and higher level of hormones, I just don't really care about sex. Maybe it's because my wound still isn't healed all the way and there is still pain in that area. But I do miss feeling sexual. Now, I feel like a female eunuch. Dating just doesn't interest me in the least. I suppose this could be more than just hormones, but I have surely changed my whorish ways! It's like my boobs are false advertisements. "Nope, sorry, we are closed for remodeling."