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.