Wednesday, September 15, 2010

110 Survivors Speak...

This question was posed to all cancer survivors on Facebook by the organization "Livestrong" . Although there were over 300 answers, I chose these to post. There is really nothing better than hearing answers like these straight from the people who have gone through a cancer diagnosis and treatment.These are their personal experiences and thoughts. Although I agree with many they are not my own thoughts & opinions. I hope if you or someone you know is facing a cancer diagnosis there will be helpful information here to help you through this time.
"Survivors: Name one piece of information you wish you had known before going through treatment".
 1) when your immune system is so low....you should incubate yourself and your house from visitors ..my dad caught pneumonia from sick people coming to visit and he didn't have a chance to fight it...
2) Keep a journal, there will be too much to remember.
3) I had no idea how important humor was. Everyone around me was so serious . . . I found humor everywhere.
4) Think of your doctors as members of a sports team, each with his or her own specific role. You need a great team captain you can trust...and who may or may not have a medical degree. That person should be aware of what all the other team members are doing, to ensure everyone's working in sync toward a common goal: your physical AND emotional well-being
5) My mother always said she wished someone had told her that it almost hurt when your hair falls out during chemo. She was so grateful the day I shaved her head
6) that I would be living my life to the fullest of its potential. Before cancer, I am not sure if I was living or just going through life.
7) that not everyone that said they would be there for me was telling the truth.
8) POSITIVE ATTITUDE no matter what happens!!!!
9)the high risk of lymphodema and how to try to reduce the risk of getting it
10) Having just given birth the day before my diagnosis, I wish I would have known how to cope with being a mom, understanding my type of cancer, long term effects and how to live life after treatment. Don't be afraid to ask questions!!!
11) more likely to get a blood clot because I've had cancer...
12) the people that said they would be there WON'T, and people you never expected and some you don't even know will do more for you than you could ever expect! I have met the most amazing people through my cancer journey! 
13) That the nurses and doctors that are there would become a part of your life and that a positive thought no matter where it comes from can do more than the treatment at times.
14) Cancer can be very lonely. The power of being touched was so important to just feel normal. I needed Hugs!  Hug a cancer patient we need it! It fills the spirit so we can fight on. Also time to heal. There is no set time frame when to feel better. It takes time.
15) How you should try to keep working, even if it's very part time because it's been extremely difficult finding a job.
16) That I did not have to remove my ovaries!!!
17) would have loved to have met someone who had been there, done that. as it happened i didn't meet my first fellow testicular cancer survivor face to face till after nine years.
18) That I wasn't the only one having a hard time. I promise I thought I was ! Lol but I suppose that's the mind of a 5 yr old.
19) how much simpler life would be once I had my priorities in order.
20) That the hormone treatment would have felt like i was going through hell and back.
21)That I would never be the same again :(
22) The long-term effects of radiation.
23) You are the boss of you!!
24) To line up dedicated people to come to my house and help me every day.
25)That life would be better afterwards. That I would be a better person as a survivor.
26) That I would be ok after it all was said and done. I was an emotional mess afterwards
27)There isn't enough money in the world to cure stupid. It only takes one stupid doctor to ruin a lifetime. Get a second opinion EVEN if insurance doesn't pay for it! 
28) Knowing an Onc. could speed up the drip to cause heart problems...should have happened on 1st cycle, no, unusually, happened on 2nd....Rituximab CVP. Alert.
29) That I didn't need rehab to stop smoking pot! 
30) That skin cancer needs more media focus, it's a killer too.
31) Get therapy during treatment. Don't bottle up your emotions. This is what happens when your brain goes into survival mode after a diagnosis. You will be better off when you finish treatment. Oh yeah, and get gentle massages ;)
32)My God.....I would have appreciated knowing what where the different phases that I would go through during and after treatment...continually had to ask the Doctors or Nurses of this and that was normal !!!! Furthermore..... I was never told that chemo. and radiology would be responsible for close to $13,000 of damage to my teeth!
33)That had I listened and used sunscreen, I could have prevented so much!
34) I wish I had recommended Cannabis to a good friend of mine to ease his pain.
35) A plan to try and recover financially.
36) One piece of info: that 11 years later I would still be dealing with the side effects and fatigue.


    • 37) a) that I had to be my own advocate throughout, and b) that the 2nd year -- the one AFTER surgery and chemo was going to be SO hard!!
    • 38) that I had choices in dossages of the various chemo treatments.
    • 39)That I could have frozen sperm and had a chance of being a father.
    • 40)I knew I would be sick, but I had no idea how bad it would be and for so long. Every muscle in my upper body so sore from vomiting that you could not touch them. All bad!
      41) Choices and the advice to "get a 10th opinion"
      42)That you don't have to go through cancer alone - with wonderful people like Paula Holland De Long and her amazing book "What's Next for Life"
    • 43) that i had choices in dosages and treatments i ended up with injuries that may have been preventable.
      44)  Build your support group from the start and inform yourself as much as possible. DO NOT put your head in the sand!!! Fight like you have never fought before...
    •  45) That I should have a scoop of ice cream before my T-FOX treatments because the Oxalliplatin prevents me from eating or drinking anything cold for a good week after treatment!
      46)That when you get diagnosed before your 21 that your life will not be the same as your peers as far as dating and your possible ability to have kids
    • 47) As a wife of a survivor...and his advocate....I wish we had known that the doctor's receptionist can make appointments appear where there were none and is an integral part of the entire process. Make friends early.
    • 48)That it does finally END! After 1 1/2 years, you begin to think it will never be over....9 year survivor Stage 3 breast cancer xxoo
    • 49)I wish I had known I would have breast cancer a second time 12 years later - I may have had a mastectomy and chemo but no radiation. 
    • 50)My sister and I ended up starting a Leukemia/Lymphoma support group in our town. We both (10 years apart) had a rare form of Lymphoma.
    • 51) I have only had 3 sessions of chemo so far but I wish I could have prepared better for the effects of it!Can't believe how SICK it makes you!Wish I had time to put on weight! I'm dwindling away!
      52) How to secure help with medications.
      53)Insurance costs....what would be considered "covered"
      54)YOU HAVE TO BE YOUR OWN ADVOCATE.
    • 55) How sick I would get after eating Greasy food's :(
    • 56) to take more time off and not rush back to work... 
    • 57) that it would take me two years to get back to running a marathon. 
    • 58)  Becoming dehydrated!!! I couldn't drink water or anything for that matter. Had to go in for fluids everytime....
    • 59) That no matter how much your care givers and friends want to and try to understand, nothing beats the fellowship and no one understands what we are going through like other cancer patients and survivors.
    • 60)That it can be inconvenient and stop you doing all those things you wanted to do, and never knew you wanted to do before you started that you now do and love because you earned it and wanted to do it
      61)What to expect in survivorship and how long it really takes to recover,
    • 62)How much PTSD would affect my life. Two years later and I still have nightmares and flashbacks triggered by the craziest things.
    • 63)If your doctors are giving you conflicting information, make sure you address this immediately. You are your own best advocate, don’t think that your doctors are all talking with each other regularly.
      64)I wish I had known that chemo brain would be so pervasive, even more than a year after treatment, and that I shouldn't pretend that I was fine physically and mentally when I really wasn't.
    • 65) I'd like to know what everyone would like to know post treatment. I'm a 20+ year survivor and the information out there has been sketchy.
    • 66) the heartache watching your child suffer.
    • 67) That being well doesn't always mean that life is normal again. You have to be a warrior for your health and always always stay focused on being healthy.

      68) That hospitals make you wait...and wait...and wait some more.
      69) Before participating in a clinical trial, seek all the advice you need from your providers, gather the information you need to make the best decision for your situation and take all the time you need to be comfortable with YOUR decision.
      70)How much school I'd have to miss because of being sick all the time, how depressed I would be during treatment, how I would be treated differently by everyone for having cancer.
      71) I'm not the survivor my mum is, what she wanted to know, was why, but other than that she wanted to know how long it would be till she felt safe without worrying everyday if it was going to come back, she is only 5 months post op, and still thinks every trip to the hospital they will tell her its back.
      72) that being a survivor is harder than you could possibly imagine - that your relationships change forever - that life never goes back to normal - that friends fall back into the woodwork once treatments are done.
      73) How to protect my right to work as a survivor
      74) My dad wishes that he would have known that the chemo ( that made him vomit ) would rupture his esophageal tumor & kill him by it bursting , insted of being told it would shrink it and give him 6 extra months... he said he would have chosen shorter time of life with better quality than the sickness & death :(
      75) If I would live
      76) Suck on candy to help with the chemotherapy
      77)How guilty one could feel because I did survived (8 months after treatment) and that I handled treatment better than most!
      78) not to look my dx up on the internet....
      79) as a caregiver, actually knowing how strong and courageous those that have to go through this are..
      80) How complicated managing EOBs vs Medical Bills were, & had a system to go to & put in place to organize & reconcile them.
      81) Well I have to say I am thankful that I thought things through with chemical treatment the stages my cancer was in, chemical treatment was not highly effective enough for me to suffer through it so I chose alternative treatment such as herbs and natropathic methods and have out lived my doom date lol by 3 yrs and still going strong! I'm thankful I had someone to show me another way...so maybe this will find someone who needs more info on natropathic meds and I can help them like someone helped me 5 yrs ago!
      82) During treatment you won't believe that you can come out the other side a stronger and better person and an Ironman finisher.
      83) How much longer doc....
      84) That Cancer is big business and all I am is a # and an insurance card.Luckily I was and still am very proactive in my treatment.I made the decisions and wasn't afraid to question the Dr.'s decisions. 85)Keep physically active; it helps you deal with the effects of medication.
      86) how much more i would appreciate the people in my life, how much more positive i would become and how much more value i would place on nature and relationships...
      87) That I was going to survive.
      88) That I would go from fat and unhealthy to being a healthy 1/2 marathon runner! The sky is the limit!!
      89) That life would never be the same again... But not necessarily worse!
      90) Advice on how to handle the panic attacks and paranoia afterward. Or just to know they would be there. Might have made them less affecting
      91) That chemo would make me uncomfortable in my own skin and that the food channel would totally disgust me.
      92) family members (especially spouses) need to voice their emotions too.
      93) SIDE EFFECTS FROM RADIATION, LIKE C.A.R Cancer Associated Retinopathy
      94) Wish we had taken more pictures during chemo, etc. My husband, a survivor and always a comedian, says he wishes someone would have told him he'd lose ALL his hair, including below the waist.
      95) I wish i would have learned more about being a survivor. I never doubted my survival but once i beat it i wasnt sure what to do afterwards and the transition back to normal life. It was sooo much harder than i ever dreamed
      96) How important it is to have a survivor support net work.Somebody that understands that has been through it to talk to.For me its been about understanding and living 1 day at a time and getting stronger, without any kind of pity.Our support network we help each other. This has happened through facebook Livestrong and Gilda,s club. I f you get a chance to help another survivor Just do it.Remember you also will be helping your self.
      97) To allow people to help and not hide it.
      98) Steriods can make gain weight and its hard to loose it
      99) That not only will I survive Stage 4 stomach/esophageal cancer, but that I will thrive and be significantly stronger than before.
      100) It's doable.... it's okay.... it can be done... LIVESTRONG.(12 year survivor)
      101) There is so much at the beginning of treatment that is needed to know like long term affects of radiation and chemo, but some of that can be pretty hard to swallow when faced with the realities of beginning treatment.
      102) That what I thought was going to be the worst would turn out not to be, and that what I thought would not bother me (no hair) did.
      103) I wish that I had been ...given nutritional information and exercises to help the treatments effectiveness and recovery from the treatment.
      104) Even though you are the one going through it, the people around you are helpless unless you guide them and let them know what you need.

      105) B-Complex to help you sleep...enjoy your food before treatment, because nothing will taste the same
      106) I wish someone would have told me how paranoid I would be about every minor symptom after treatment and remission....  
      107) My hubby wishes he would have exercised everyday before going through prostate cancer surgery. Helps with the stamina needed for recovery. Surgery was a success and contained. Praying through each PSA test. "Know your numbers!"
      108) That oncology nurses are the greatest and most wonderful people on the planet!
      109) how doctors think! You owe it to yourself and family to do your homework about options and treatments and ultimately to find the right doctor. Thanks Dr Urken for never shutting down my questions and for knowing you could make a difference.
      110)"if i can just make it through today.." will get you further than you think

      And lastly my own; how hard it would be to completly submit my life, like I had never done before. To KNOW and TRUST that the Lord is always with me, will never leave me and knows what is best.





4 comments:

Racn4acure said...

Great list! I just got back from 2 weeks in Alaska and have some catching up to do. I hope you are feeling better. Art

Elayne said...

Thanks Art! Alaska... I am jealous :)
Feeling better too.
Glad to hear from you, hope u decide to keep your blog going.

Anonymous said...

Elayne, that is a great list. I work with a group at church who ministers to people with illnesses. I am going to print this off and offer it to the people we minister to. In case you don't remember me, I am Cindy's friend in Owasso - a survivor also. I keep up with your blog and keep you in my prayers. You are a great inspiration and a great witness for God. May He bless you. Dianne Smith

Elayne said...

Hi Diane!
Yes I do remember you and hope you are doing well!
Thank you so much for your comments and for taking the list to your ministry group. I hope and pray it will be of help and comfort to those who need it.
I just love to watch the Lord at work...isn't it great?

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