If I Only Knew

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” ~ Author Unknown

Hindsight has always been one of my strongest suits 😉 with an occasional glimpse of foresight. Many times I have faced a task and just dove right in and flew by the seat of my pants 😀 which sometimes has been great fun, but other times, I wish I would have known…

Well now that I am close to the end of my cancer treatments, there is some things I wish I knew beforehand, and I hope others will post what they found out when going through cancer treatments that you wish you knew beforehand that would have helped out.

I’ll tell you what, I didn’t know that this would be such a LONNNNGGGG process!  Mentally I may have been able to prepare myself if I knew or understood what an impact dealing with a disease this long has on your mental and emotional well-being…  This also affects your relationships because people don’t realize it is going to be such a long drawn out process and they think as soon as your done with your treatments, you should bounce back.  Well guess what?  You don’t.  Shoot, I even thought this way.  You took a beating and it took some time to tear you down, now it is going to take some time to gain your health and well-being, AND you will regain your energy, just not right away…

If I Only Knew What I Know Now

  1. Chemo beats you up, no if ands or butts about it.  Prepare to make peace with just laying around, look at this as a time to take time out from the world.
    • I read young adult fantasy and fairytale-type of books, nothing that would tax my brain or get me excited, when I could read, it was a nice break.  I also took up coloring with crayons or colored pencils.  I bought a flower coloring book from the art section at the book store, so it was more adult-like and not kiddy coloring, just enough to relax and think about my colors.  But a lot of times I had to make peace that I couldn’t do much and that sleep needed to be my best friend.
  2. Do not eat many of your favorite foods during the week that follows chemo.  I ate too much of my favs: shrimp salad (green) and rice pudding, and because several times I became ill, I can hardly bring myself to eat either one now 😦
  3. I would have asked for help with meals during chemo, I had lots of people who wanted to help me but I couldn’t think what I wanted help with or bring myself to ask.  During the thick of chemo, it would have been nice to have at least 2 healthy homemade meals a week pre-made.
  4. I also would have asked help with cleaning my house at least once a month, jiminy, can we talk about the house going down the tubes?  I found out about Cleaning for a Reason (link under blogroll) at the end of my treatments, which would have been a Godsend during treatments.
    • I also would have asked for help with my dog, instead I ended up giving her away because I just couldn’t do anything with her 😦
  5. I would have talked to a naturopath or the Oncology nurses about antioxidants – many which you cannot take during active treatment, with chemo it is like 3 days before and 3-4 days afterwards, with radiation you can’t take any, because it reduces the effectiveness of the chemo or radiation.  I think this is kind of important to know don’t you?
  6. Stay away from extra salt!  Jiminy crickets!  I became so bloated, and squishy because salt was the only thing I could taste during chemotherapy because I lost my sense of taste so I salted everything to an excess, jiminy!  The other thing I learned was because of the steroids and other chemo drugs that you can gain weight ad nauseum – I put on 50 pounds during all my treatments, jiminy!  What a battle this will be to get rid of.  You only hear of people loosing weight but you don’t hear of folks who go the other direction and it happens a lot.
  7. Your self-esteem and confidence will go on hiatus.  Hard to be confident and loving of yourself when you have 1 eyelash and look like Uncle Fester 😉 but besides the physical aspects, since you feel so sick, it is hard to feel sure of yourself.
  8. Chemo-brain.  I totally underestimated, and did not understand this one at all because I was told I may become a little foggy during treatments, *ell it is more than fog.  I couldn’t find the right words to say alot of the times, it was like my brain was disconnected from my lips, I couldn’t multi-task, and I forgot a lot!!  Truly!  I would be doing something and totally forget what I was doing if the phone rang, or someone stopped and asked me to do something later!  This has been a difficult adjustment for me, which I am TRYING TO look at it as a blessing, not all the time, but I am trying.  I have to focus, and focus on one thing at a time, what a rough way to learn to Live in the Now.
  9. Emotions like anger and tears, they will come out of no where.  I cried a lot in my car 😦 and the anger rises its ‘toopid head sometimes over goofy things, like dropping your cup of coffee on the kitchen floor was enough to make smoke come out of the top of my head!
    • Deep breathing 3-5 times has been helping me with both of these – I do mean deep breathing, the kind you learn from Qi Gong, from way deep inside you, what a wonderful way to restore peace!
    • Stay away from negative people – this is not a good time to be surrounded by energy that only makes you feel worse.  I also stayed away from watching violent (don’t care for them anywhos) things on TV or the movies.
  10. Pamper, pamper, and pamper myself, instead of trying to be the caregiver on-call 24 hours a day – I could have taken a break from trying to care for others at least a few days a week, and the world wouldn’t have fallen apart.  I also needed to voice this to my loved ones, so that they could have understood why I couldn’t do somethings like I use to.
    • Further note on this one – don’t feel guilty about doing it!
  11. Talk, talk, and talk about your cancer and treatments, but do it with someone who has had experience with and understands cancer treatments.  If you do not have a cancer friend, a professional is a good thing to do 🙂 and an occasional support group meeting doesn’t hurt either.  You are going through so much, that keeping all your feelings inside of you is not helping you heal, and it is too much to do by yourself.
    • I also would have found a way, been adament about it, about talking this over with my kids and finding a way to share with them.  The digital story I did about my chemotherapy (link under blogroll) helped break the ice with my son!  And we were able to start talking and heal…
  12. You will loose some friends along the way…
  13. You will change, but this is ok.  You still will be you and it was you that got you through this trip to *ell and back, but you will change.  You will think about things a little differently and possibly handle things a little differently.  This is NATURAL, remember how we all changed when we got married or  divorced, or had kids or got a new job or moved?  We had to change to accomodate our new lifestyle or external changes that we have no control over, so the same happens when going through cancer treatments.  Your lifestyle changes a tad, but you are still you, perhaps only youer than you 😉 (in the famous words of Dr. Suess!)

Alot of above is hindsight… and learned the hard way; this is another one of those pages that will be in progress because there was a lot of tidbits that I picked up, and as I remember them, I’ll post.

Here’s to rebuilding our lives…

9 responses to “If I Only Knew

  1. You have covered things pretty well. One thing I wish I had known then that I know now was that there would be mets. I would have saved myself the trouble of recovering from bi-lateral surgery. It all came out in the wash for the best though.

  2. Hi,

    I have really enjoyed reading your blog, thank you for sharing it with us in the world wide web! I am an interior designer, working with a hospital here in NY to design a chemo center, and your descriptions of chemo, and the place you go for treatment, has been extremely helpful to me and my team as we hope to design a place that is comfortable, gives optimism and supports you best during your treatment.

    Thank you thank you thank you so much for sharing. I look forward to hearing more about your recovery and remission.

    You are in my prayers and thoughts

  3. Thank you Mary, I sure hope you all come up with a calming, healing design – keep pink out of it 😉 I hope you will send a link for me to see what you all came up with – perhaps you will set the “trend”. I wish you strength and wellness.

  4. I had my last chemo treatment 2 weeks ago.
    yeh yeh yeh !


    Welcome back to the land of the living 😉 😀

  6. HAPPY NEW YEAR LAURA…may 2009 bring us cancer survivors prosperity, health and love of our family and friends in abundance! Here is an update for you..I recently had my 1 year scan and I am still 100% cancer free 🙂
    (Thanks God and bless my friend Laura!)
    Hope you had a fabulous Holiday and ate whatever you wanted! (I remember Christmas last year and not so much fun when chemo wrecks one’s taste buds and energy huh!)
    Keep writing this journal as it brings hope to so many people! Jenn

    • Dear Jennifer, thank you for the encouraging words! I wish you and yours a Most Happiest and Peaceful New Year! I am so HAPPY YOUR BEST FRIEND IS NED!!!! (No evidence of Disease) May you and NED dance together for many, many, many years!!! I am so glad we came together under not such beautiful circumstances, may God protect and guide you. HUGS AND MORE HUGS!

  7. I love your page its someting like I want to create for this being my second journey with hodgkins lymphoma-stage IV chemo. You are so inspirational. I can relate to your words. and someof what you write is what I have been trying to put into words and just couldn’t seem to find the right words or wasn’t able to emotionally. I haven’t gotten to read through all your website but I will What I have read has touched me and I can relate to and I think it will be helpful to me

    • Autumn, thank you for such kind words. Many of times I had to pray for guidance and strength to be able to say what I did, it was so important for me to “tell it like it is.” There was so much to say and some days it is hard to let the words come when I was so sick from chemo or suffering from any other of the myriad of mental, emotional and physical problems that run around with cancer and its treatments…

      My prayers are with you Autumn, keep one foot in front of the other, I wish you strength and peace as you face this journey again.

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