I wish I had known when I was diagnosed that...

[Mary]

Please complete this sentence:

I wish I had known when I was diagnosed that...

Elaborate as much as you'd like.
 
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[Mike_H]

I wish I had known that the chemo would make me sterile, and that if I wanted to have children in the future, that I should go directly to the bank, and deposit my swimmers!

[Allan]

I wish I had known when I was diagnosed that this would be a never ending adventure.

[Karen_P]

I wished I had known about the emotions that you go through and that it is normal to go up and down and all around....I know that I relied on this site to let me know that I was normal...whatever that is!!!
Karen P

[John]

...there were others just like me out there all over the
world.  I wish that I had been given ways to recieve
support from those that had similar cancer and could
have helped me through my times emotionally.

[Kellie]

i wish i had realized i shouldnt push people close to me away just because they don't understand...that people who don't understand either try to or not pretend like they do...that i wasnt convinced everybody with cancer dies, because they dont...that i would have talked about my feelings more and not became so depressed...that i would have went to a dr that actually knows something and not had to take as much chemo, always get a 2nd opinion...that i would have kept doing scans and blood work, i didnt think i needed to after 16 years, you do!...that even though you dont feel like it at first, cancer has a positive effect, it makes you realize whats good in your life, and what you need to change...that there is soo many people you can help just by talking to them.

[Elizabeth]

I wish I had known when I was diagnosed that it is not all up to the doctors to "take care of me", and that I had full responsibility to take care of me, too.

I wish I had been more pro-active in asking questions and getting answers and most important of all, writing them all down. It would have helped me to understand just exactly the enormity of my situation and clarified that I needed to create a plan for myself.

I wish I had known that recurrence (malignancy and metastasis) was a possibility!

I wish I would have better educated myself of the signs of recurence so that my next tumor would have been treated long before it got so big and my only surgical options were so drastic.

I wish I had realized that my doctor was so used to talking nebulously about things in order to make me feel secure.

I wish I had been much more organized in my own mind as to what was an authentically clear answer to my concerns and what was a wishy-washy.

I wish I had not cowered under the illusion of "Doctor knows best and I know nothing, better let him take care of it".

I wish I had better communication skills to get to the facts. I wish I had known how to ask more detailed questions. By the third recurrence, I had finally learned to use simple but leading questions: "Can you explain more about that?" and "What do you mean by
that?" and "I need more details to understand."

I wish I would not have allowed a simple eyebrow lift or a fidget of my doctor to intimidate me into not asking more questions.

I wish I had known how to face up to my doctor and treat him as my equal partner in taking care of my body, instead of repecting him more than myself. After all, he was taking his signals from me!

I wish I had not done guilt trips on myself for asking for information or help from any medical staff persons.

I wish, instead of being spaced out by the surprise of it all, I had maintained some semblance of my own dignity.

I wish I had been more gracious and kind to those who were involved in my care and treated them as individuals deserving of my personal acknowledgement of them as human beings instead of thinking of them in objective terms, all "white coats" with blurred faces without names". It would have gone a long way for my being treated as an individual too.

I wish I would have never started smoking, wish I would have paid better attention to my nutritional intake, gotten sufficient rest, and not stressed my body by ignoring it, maybe I would have had a more gentle and successful recovery.

I wish I had learned how to cope with physical and emotional stress early on, so that when I was going through it all, I would have been my own best friend instead of the one who endangered my own health by my ignorance.

I wish I had developed a stronger support group among my family and friends instead of lying to them about the seriousness of my problems and shutting them out of my life to protect them from the awfulness of my diagnosis. I wish I had been kinder to those who prayed for me when I was in a state of mind that abhorred such sentiments.

I wish I would have seen that there are many caring people around me every day, strangers as well as friends. If only I would have given them a chance, I could have benefitted greatly from their thoughtfulness and caring. Instead, I pushed them away because I was so wrapped up in my own negativity.

I wish I would have sought counseling support right from the beginning, and continued to seek out the one compatible counselor, until I found it, instead of blaming all counselors for being too dense to help me sort out my myriad of feelings and the ones I hid from
myself too.

I wish I had understood a lot more about drugs and their effects upon me, both detrimental and beneficial, and kept closer track of how they affected me.

I wish I had taken the time and trouble to keep a diary or journal of my experiences to help me sort it all out later on, when I got past it all.

I wish I had really taken a closer look at how to prepare for my possible death, and get all my papers in legal order. Even though I owned nothing, and I did not die, I know now that it would have been a huge disaster for my family to try and get all the legal
stuff handled if I had died.

I wish I would have had more of a sense that I would come through it all and not have carried that burden in my heart that I was on my way out. I would have held more hope and felt less despondent.

I wish I had understood that my bursts of outrage, my heart palpitations, my extreme reactions to minor things were all part of my need to get a proper psychological treatment in place, instead of thinking they were all my normal reactions.

Note: This has been a good exercise for me to go back in time. I know that wishing it were different could make me feel regretful. But, I long ago gave up such regrets. Instead, I hope that others will benefit from my experiences. It was not always like that for me. Things changed for the better when I began to take care of my regrets and turned them into learning experiences.

I'll be glad to discuss any of this in more detail with anyone who may be facing these issues.

[Jeanne_C]

I wish I had known when I was diagnosed that the chemotheraphy treatment for bone cancers is so extensive and strenuous.  My limited experience with family and acquantainces suffering from other forms of cancer told me that I would visit a treatment center for a few hours for chemo a few times and then it would be done.  It was devastating to learn that I would have to have 14 rounds of chemo, all of which would be in hospital and that I would spend almost a year in initial treatment.

[Cari]

I wish I would have known that "life after cancer" is almost as hard, confusing, fearful and emotional as life during cancer.
I wish I would have known that I am not alone!!
I wish I would have known that a diagnosis of cancer would eventually lead me to a wonderful "cancer world" where support, inspiration, laughter, tears and anxiety are our daily struggles, but we struggle with it together!!
I wish I would have known that the "talk" about limitations after surgery or chemo is A LOT different than actaully LIVING with the limitations!
I wish I would have known that my oncologist, my surgeon and my chemo nurses would become such a HUGE part of my life.
I wish I would have known that scan anxiety is really something that many of us feel!!!

[Rachel_L]

I wish I had known when I was diagnosed that.........
It is much harder than I thought, mentally and physically both on me and my loved ones. I never knew how much I meant to others until now. My kids are my strength and they are what I am fighting for.

[Celeste]

   I think Elizabeth said most of it, She was the first person I found when I was first diagnosed she can answer most question but if she can't she will tell you where to find your answer. I agree finding support and information is key.

    One of the first things my doctor told me when he was explaining my surgery,
    " You will be on crutches for 6 months after surgery" So I thought from crutches to walking!! Wrong...I walked with a cane for 1 1/2 years so it took 2 years almost to the day
after my surgery.


  Take Care,
   Celeste

   2003 chrondrosarcoma no chemo allograph
   2000 breast cancer chemo
   NED

[Cathy]

I wish I had known when I was diagnosed that this site existed and that I was not so sick that I could have benefited so much from it. 

I wish I had know when I was diagnosed that in times of coherence I should have kept a journal because I am now asking all kinds of questions.

I wish I had known when I was diagnosed that there would be friends and family that could be there for you and then those who could not be.

I wish I had known when I was diagnosed that I had met Mike Smith on this site sooner as he could have told me what I was in for earlier.

I wish I had known when I was diagnosed that the peace that came over me would have stayed.

[Aimee]

    that it is ok to be afraid and to be angry !  It is ok that you cannot and will not be able to do things that others can !
  And that you have just been through a life changing experience and you will always be in pain, but be proud of your scars !


   
 

[Julia]

...Hmmmm. You know, I can't think of a single thing I wish I had known about before it happened. My life would have, without a doubt, taken a different path. I'm afraid to be afraid, and the knowledge of what was to come would have scared the crap out of me. I don't know that I would have accepted all of the nausea, vomiting, PAIN, travel, possibilities, experiences, friendships, depression, sadness, loss, LOVE, help, anger, etc. that has made me who I am.
Nope-I there's nothing I wish I'd known.

[Jimmy]

I think the group has spoken for me. Julia I totally agree with you. I don't know that I wish I had known anything else. I mean once I was diagnosed I went on a quest for knowledge about my condition. What I learned from researching really had nothing to do with what I went through. I guess it is different for everyone. I know that I found this group and that was one of the best things to come out of my research. I think what I know now is more important than what I may have known then. I think Albert Einstein put it best. "The only source of knowledge is experience."

[Catherine]

Please complete this sentence! Elaborate as much as you'd like. Some of your answers will be used on our front page, which has recently been updated with a new spotlight and a very interesting story of misdiagnosis. Now we just need some great words from YOU!

My perspective on life would be forever changed...

That I would remember the little things that make me happy and strive to capture them...holding your child's hand, smiling, watching someone learn something new,breathing,smelling the rain, feeling the sun, watching your family interact in their special way,letting people take care of you, learning about patience and trust and friendship and love.

I wish I'd known that some of the loved ones in your life will let you down because of their own fear and others will show strengths you were unaware existed.
 
I didn't want to learn on a personal level how to deal with cancer but had to anyway... the mortality,the fear,the sharing, the intrusion of professionals into your life, pain, regrets...

I would remember the people and moments that are most important to me.

My new goal (apart from being well) is to MAKE MEMORIES. I'm doing it now.

Catherine

[Kevin]

First off, a few things I am glad I did know before I started...

...I am glad I knew to get a second opinion right away and not blindly accept the initial treatment opportunity offered.

...I am glad I had heard it might be a good thing to have some extra pounds going into chemotherapy.

...I am glad that in the beginning I visited the doctors with at least two famliy members or friends because there was no way I heard the doctor say anything after he said the word cancer.

...I am glad I was told to be proactive with anti-nausea medication.  Once the nausea starts, it is hard to stop.

A couple of things I wish I knew before I was diagnosed...

...I wish I had known the love, compassion, and humanity of all of the people around me, known and unknown.

...I wish I knew that there was a cream that makes the annoying needle pricks go away.


Kevin

[Mariana]

I wish I had known that Cisplatin was going to STEAL my hearing and give me all that NOISE!(tinnitus)
I wish I had known that chemo would make me sterile.
I wish that I'd known about others with my same type of cancer that had made it.
I wish that my doctors would have cared about the emotional side of all of this....I'm glad that one nurse did!
I'm glad that I was never kept in the dark about my treatment.
I'm glad that those that really love me stuck with me though it all....and some of those bonds grew stonger throughout it all.

[Arlene]

I wish I had known that when I was told i had cancer, It wasnt a death sentence. I wish I had known that I wasnt alone. I wish I had known you guys at the time to help us all get through this and that we can. I wish I didnt have to deal with this while still being very depressed about my husbands sudden death 6 months prior. I wished I had known that how healthy a person might think they are, anything can happen.
Finnally I want you all to know that the best medicine is when you feel the slightest change or pain, see your doctor. Dont wait. Stay on top with your body and mind and get answers. Its never to early.
Stay well, Arlene

[Charlene]

All I wish I had known:
1)  that I wasn't alone.  that there were other young adult bone cancer survivors going through what i was. 
2)  all needed info on long term effects and the best follow-up protocol for me.
3)  that this is a lifetime battle not just circumstantial.
4)  told straight up the pros and cons of limb salvage surgery verse amputation.  or at least what lied ahead of me.  I
      know it's tough for the docs as every case is so indivualized but come on they gotta have some clue.  right? 
5)  how important seeing a sarcoma specialist is.  something i lacked in my care.  which made chemo extremely more difficult then
     necessary.
6)  that all my thoughts and feeling were normal.  i wasn't crazy.
7)  ditto everything everyone else said. 

charlene

[Garret]

I wish I had known.........

......that this disease stays with you long after the treatment is over.  Its a daily thing, in the mind, in the body.  Its with you every day of your life in some shape or form.  There's always a reminder.  Some days are good, some bad, some very bad.  Then again, I wish I had known about a site like this when I was diagnosed.  Good people, good info.

[Michelle]

When Chris was diagnosed....I wish I had really, truely, fully understood that death WAS a very real possibility.  I read the statistics and knew what we were up against---worse than most osteo diagnosises.....but I couldn't look at death.  I couldn't bring myself to see that possibility. 

There IS a great song playing on the radio these days, "Live like you were dying."  We didn't really ever do that......we kept living like he was going to live.....

There is that flip side to hope.....it can set you up for heart-break. 

If I would have REALLY understood, I would have loved him much better.....EVERY day is precious, dont waste it.

Michelle

[Elizabeth]

I wish I had known I would be facing so much more pain than the C-sections I previously had.

I wish I had known I was going to be in the hospital for so much longer than having the C-sections.

I wish I had known that doctors cannot really tell how long you have to live so that I wouldn't have believed that every tomorrow was going to be my last.

I wish I had realized I could get up and walk a lot sooner than I did, as I had been told I would not be able to walk.
 
I wish I had met just one other person with a rare bone cancer, so that I would not feel so all alone.

I wish I had known that out of all that fear, turmoil, and suffering that it would turn out to be the greatest blessing my life.

[Sara]

Well, I think I was pretty lucky because, thanks to Elizabeth and her Chondrosarcoma Yahoo group which I found early on, I was able to learn from other people's wisdom.  I was also lucky that my healthcare was covered at one of the best hospitals with the best doctors in the country (MSKCC) and that I received the proper diagnosis and helpful second (third and fourth) opinions early on.

Still...

I wish I had known...
-Earlier about the medical advisor I eventually found!
-That I was in fact capable of making the decision I needed to make, and eventually made, and that I would have had more FAITH and PATIENCE with myself through the decision-making process
-How it would effect my boyfriend (now fiance), so I could have been more clear with myself and him of what I needed from him, how I needed him to help, and how I DIDN'T need him to help.  I found the line between independence and dependence was trikcy and difficult on both of us in unexpected ways.

[kara]

I wish I had known when I was diagnosed that the two years of treatment that seemed like an eternity back then would seem like a blink of an eye nearly twenty years later.  I wish I had known when I was diagnosed that there were going to be many years left to enjoy life and not tried to cram so much into those two years.  I wish I'd taken it easy!  I wish I'd let "regular life" stop for awhile and felt okay with that and focused on getting better instead of focusing on trying to do everything I did before the cancer.

I wish I had known when I was diagnosed that there were others out there going through the same thing.  I wish I'd had the opportunity to talk to someone who had gone through the same thing!  Where was the Internet in '89??

I wish I had known when I was diagnosed that I shouldn't eat my favorite foods during chemo.  I still can't eat Cadbury's MiniEggs!

I wish I had known to press the doctors harder for more post-surgery physio.