• Just got diagnosed, any words of advice?

    Asked by voros on Tuesday, April 16, 2013

    Just got diagnosed, any words of advice?

    Surgery is over, chemo will start soon. It seems pretty overwhelming right now. Any words of wisdom out there?

    16 Answers from the Community

    16 answers
    • Peroll's Avatar

      Voros, Hello andc welcome to WhatNext. Sorry you have a need to be here. I am from Des Moines Wa. and there are aq number of others here form the Seattle area. I know how overwhelming things can seem at your stage of treatment. It is scary and not fun but you need to klnow that your csancer can be beat. Chemo will have side effects but they can be tollerated and treated. Be sure to tell your Drs about any as soon as the happen and if they tell you that you may get nausea or other specific side effects be sure to get pwerscriptions to treat them before you start chemo, it is much better to treat the side effects as soon as the happen than to wait. Also if you are going to be at an infusion center for chemo be sure to take things like a tablet or laptop and some music to listen to to help pass the time. You may or may not feel like reading or watching TV. Good Luck and let us know if there is anything else we can help with.

      over 3 years ago
    • Kathy's Avatar

      Hi! I'm an ovarian cancer survivor and I'm trying to come up with some words of advice. I found having a notebook to write down all my questions was helpful. I also kept track of all my medicines I was taking and wrote down my side effects and what worked best to help. I enjoyed this site because it helped me to not feel alone. Try your best to take one day and appointment at a time. Keep us posted. Take good care.

      over 3 years ago
    • carm's Avatar

      Iam an oncology nurse who specializes in gyne cancers and on this site, I would connect with Carol-Charlie. She is an ovca survivor with some sage advice. Like Kathy, she is a verified Woman of Teal. Best of luck, Carm RN.

      over 3 years ago
    • Cindy's Avatar

      I had ovarian cancer also and agree with Kathy, having a notebook helped and also taking one day at a time.

      The chemo, for me, wasn't as bad as I expected. The drugs to counteract side affects worked well. I never felt nauseous except very slightly one time. Everyone's experience varies and not everyone will have the same side effects. The first couple of days after each chemo, I felt okay except for a bad case of constipation. I learned to eat a lot of high fiber foods, avoid low fiber foods, and take laxatives for a couple day after each chemo. After a couple of days, I felt very tired for a few days. I slept a lot on those days on my couch with almost everything I needed nearby on a tray or on the floor. It helps to have easy to fix meals such as microwaveable meals, sandwiches, snack or have someone cook for you. I did a lot of crocheting, so I had yarn, crochet hooks, and crochet patterns nearby when I felt up to it. After a couple of days, I gradually started feeling back to normal.

      My hair started falling out about 2 weeks after my first chemo and my scalp was very sensitive. I got a wig I borrowed from a friend before I started losing my hair. I also had several caps that I made myself. I mainly went bald when I was home alone with just my husband. Our local American Cancer Society office had wigs and hats that they gave away free to cancer patients. I tried some of their wigs on, but decided to stay with the one I borrowed. I did get a couple of wig liners from them which made the wig less irritating on my scalp. Also, some insurance companies will pay for a wig - you might want to check. One good thing, I did not need to shave my legs until after a couple months after my last chemo.

      My chemo was 6 treatments spaced 3 weeks apart. The chemo treatments had cumulative effects so that latter ones were worse than the first ones. I work 4 ten-hour days with Friday through Sunday off. I normally had my chemo on a Thursday and went back to work on the following Wednesday except for the last two when I had problems with my white blood cell count getting low and had to have some shots to bring my white blood cell count go back up. During that time, I stayed home away from other people until my white blood cell count went up. The shots to bring up my white blood cell count caused me to have a low fever and feel achy. I recommend using a lot of hand sanitizer and staying away from sick people especially if/when your white blood count is low. I stayed home a week after my 5th chemo and two weeks after my last one.

      After my last chemo, I got tired out easy and did not feel like exercising until about 9 months later. The most lasting side affect I had which got worse with each treatment was peripheral neuropathy in my feet. I still have some of that 2 years and 2 months after my last treatment although it has gotten better. Other than that, I feel back to normal.

      over 3 years ago
    • CathyG's Avatar

      Hello Voros, Sorry you are on this journey. I had peritoneal carcinoma, stage IV, am diabetic, with heart issues also. I was 75 when diagnosed, In June I will be 1 year out of treatment. I had 6 treatments 3 weeks apart except for the time off when I had debulking surgery. The first 4 treatments were mostly uneventful. I felt great the first 2 days after chemo because of the steroid. Then I would get very tired and slept and slept. Beginning with the 4th chemo I got thrush in my mouth (like babies sometimes do). I got a prescription for the thrush which was a tremendous help. The thrush continued through the 5th and 6th chemo and for a month after treatment was finished. My CA125 was over 800 before treatment and the last 2 CA125's were 13. Everything looks good at this time.

      I was very weak after the 6th treatment and couldn't stand or walk w/o help so I was sent to a care center for a month for physical therapy to the tune of over $10,000. I was released from the hospital after 1 1/2 days. I couldn't walk, stand and I was bleeding. BE CAREFUL...with Medicare and Medica you must be admitted for 3 days before the insurance will pay. It doesn't seem fair that one pays insurance for 40 years then when you need the service they have many different rules that disqualifies you from receiving payment.

      I have residual damage from the chemo; neuropathy (wear wool socks to bed to keep your feet warm) in both my feet and hands (my hands felt so cold I wore gloves to bed or I couldn't sleep, balance problems, chemo brain, bald head (have a wonderful wig donated from the American Cancer society),arthritis in my hips and knees I didn't have before, etc. etc. But I'm alive and feel better than I have in years!

      Pretty much my journey has mirrored many of the other patients. I wish you hugs and best wishes. One day at a time.

      over 3 years ago
    • CAS1's Avatar

      Take it day at a time. I focused on just getting through that one day.
      When it got really bad I would say " I can get through this day" and I didn't think to much past that.

      It is overwhelming, its hard and its awful..Yes, this is all absolutly true for anyone having cancer. It really stinks..Hate it. Would not wish it on anyone. Terrible and not at all fair.

      But then I would see a child waiting in the Chemo waiting room with his little back pack or I would see a child going into the radiation area or once I saw a baby being taken into radiation and the whole thing was brought into focus for me..

      I looked up and thanked God that I had insurance, I had the best Doctors, and I had my husband, my daughter and friends and family helping me. And that I had already had a wonderful life and was otherwise always healthy and I had great love for my parents and sister, auntie and so many other important people in my life now and those i had already lost.

      And thats the trace I put myself into in order to get through it.

      Go easy on yourself. Your still in shock and maybe even PTSD..Rest and comfort yourself as much as possible, as much and as long as you need, and let yourself feel the grief of this Dx and then let it go. Mourn for yourself..its good for you to feel all those emotions and then let them go when you can.

      over 3 years ago
    • BuckeyeShelby's Avatar

      Hi Voros. I know it's a scary time. Some hints about chemo -- I took a warm fuzzy blanket with me. Also a pile of books (I read a lot), suduko, a big water glass, juice, lunch (as I was there for about 6 hours), and snack (I took trail mix). If at any point during the infusion you start feeling weird, tell the oncology nurse immediately. And don't be afraid to ask them questions. All the ones in my treatment center are very nice. Hang in there. And don't let statistics define you. Otherwise, as stage IV b endometrial cancer, I would have given up long ago. Those numbers are 5 years old and don't take into account you as an individual and the path of your particular disease. Many hugs!

      over 3 years ago
    • GregP_WN's Avatar

      Welcome to the site, and I am sorry your having to be here. But, there are lots of people here that have boldly gone before you, and you can benefit from their wisdom and experience, just as you have asked for.

      It's a scary time, but just know it's a doable thing, you will do great and come out the other side in victory.

      Please let me know if you need any help finding anything on the site.

      over 3 years ago
    • Rory720's Avatar

      Hello Voros. Sorry you are one of the club. My advice is take one hour at a time. Take things as they come. Chemo does not hurt while they are administering it. Bring a book, watch tv. talk to the people around you. They are either experts or new and will have answers or the same fears you have. Don't make it your life. Make it a few hours of your day to save your life for what you want to live for. I had surgery last July and finished Chemo last October. I go today for a check up.

      Ask as many questions as you need to.

      Keep us posted.


      over 3 years ago
    • Carol-Charlie's Avatar

      Welcome to the club you never wanted to join. We're here for you. From my point of view you're done with the hard part. I was diagnosed with Stage IV ovarian cancer!... I was told after surgery that I had about six months left. That was SEVEN years ago. I asked God to take my hand and lead me to where He wanted me to go. He lead me here... Two years of chemo and aches and pains and numbness and hair loss....My life has changed... for the better. I have met such wonderful, caring, loving, generous, funny (Check out Tickling Cancer, on this sight)...I have found that people I'd thought of as neighbors, were dear and caring friends and friends that were less than I had hoped... God has been so good to me. Here take my hand, I'll walk will you a while until you settle in... or for the rest of your journey to health again. Heres a cyber hug (VOROS)... they're good for cheering one up.

      over 3 years ago
    • mistymaggie's Avatar

      I did also about 6 weeks ago-Small cell Lung cancer--"I Will Win This Fight" and You will also--Let the Fight Begin :) and <3

      over 3 years ago
    • c25862's Avatar

      I first like to say sorry to hear that you have to go through this. Second thing is think positive, having a positive attitude is key

      over 3 years ago
    • derbygirl's Avatar

      Hi voros and welcome to the WhatNext family. I'm a five year ovarian cancer survivor and I know that feeling of being overwhelmed as does everyone here. Being diagnosed with cancer is frightening. First thing to buy is a notebook to write down questions for your medical team and to take notes. Patients tend to forget important things they want to ask their doctor when they are at appointments. You will be given a lot of information and instructions from your team so you want to write it all down. Have what I call a cancer buddy to be your go-to person to go with you to appointments or just be there for you to talk, laugh, even cry. It really helps to have a person there that can be your strength when you don't feel strong either physically or emotionally. Get yourself some easy to make meals because you won't feel like cooking so having something that's easy to make is important. Also have something that you can eat and drink when nausea gets the best of you. Get books and magazines to read when you are at your appointments because you'll be there for some time and will need something like these or puzzles to occupy your time. An ipod with your favorite songs is helpful as well. The one thing I also bought was a journal that I can write my personal thoughts in as sort of a memory book for me and my family. It helps me put things in perspective through my journey. Take care and know that we are all here for you, just log on.

      over 3 years ago
    • Brielle's Avatar

      Wow, you have gotten great words of wisdom! My daughters bought yoga pants and athletic /aha bras. This clothing has been a huge part of my wardrobe during the past year and a half (so comfortable during treatments, tests, etc.)Keeping notes in one notebook/journal after each treatment prepared me for the next treatment as to side effects and provided information for the onc. There was so much that was unfamiliar when starting the journey. This also helps remind me how my body responds during the chemo cycles. A notebook goes to all treatments and appointments. With my chemo fog,writing things down supports my memory. By keeping copies of lab reports , gaining knowledge of results helps to be more aware as you progress through the cycles. There are many angels around who are willing to help ( like driving you to treatments). Just ask if needed. There are no dumb questions. Researching on sites such as this one also provides great ideas for dealing with the chemo. We respond differently and there are so many different chemo/treatments. During infusions the onc. Nurses have been very helpful in describing the process, drugs administered and providing ongoing guidance. The chemo is painless in administration by using a port, but the days after may be challenging. The onc staff will help you prepare.You will be surrounded by many kind and caring people. The best words of wisdom during my journey have been to take one day at a time, listen to your body and count each day as a blessing that God has given us. Stay focused on recovery and positive thoughts. Remember that as this is a personal journey, but there are many providing support! Best wishes as you begin this next part of the journey,

      over 3 years ago
    • Vjp2012's Avatar

      You are not alone. This site is awesome. Try and stay as positive as possible. Find some meditation music you like. And, laugh often. Hugs! You can do this!

      over 3 years ago
    • mommybeatscanc's Avatar

      Hi Voros- I hope your start to chemo went well. I found keeping s blog of my experience really helped me process my feelings. I also am a firm believer in trying to stay fit during chemo. Each evening I would drink plenty of water and set out for a walk. Distance doesn't matter but I believe it is important to keep moving. Please keep us updated on your journey. I'm a year post chemo and just ran a marathon! You can do this! Stay strong and you will come out stronger than ever.
      Here is my experience with chemo if you are interested. http://mommybeatscancer.com/2013/03/20/bep-chemotherapy-for-ovarian-dysgerminoma/

      over 3 years ago

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