(posted on former website 1.27.2016)
I write this for those who are in the ‘no man’s land’ of recovering from cancer treatment and returning to the world. I write this to share my personal journey and to let you know that I understand, and you aren’t alone.
No one talked about this. I didn’t know and wasn’t prepared for this. ‘This’ is problematic as I am the type of person that if I know what to expect (i.e. ‘this’ is going to be rough), I can mentally prepare myself for the onslaught of occurrences.
Tomorrow, I go for another treatment, which I go for every three weeks for a year, at the Cross Cancer Institute. Surgery, chemo and radiation are done. Since my diagnosis on May 19th, it seems like I’ve been on a whirlwind rollercoaster with appointments, tests, lab work, treatments, recovery from each treatment and their side effects. It is compounded by the fact that I live in rural Alberta and need to travel into Edmonton for all of these sessions. And so, after my last radiation treatment, in the beginning of December, I stepped back and in.
At first I thought is was because I needed rest from the continual movement of my treatment plan, and to recover from the barrage of chemicals and radiation my body had encountered. I knew I was tired as I was dealing with not only my cancer journey, and my ten year’s of dealing with a growth on my spine, but severe reactions to the new cancer medications I received in December. You see, I have learned that one cannot give if they have nothing left, and so, I retreated to recover. But it became more.
All through the hurricane crossing to health I strove to be as well as I could be physically, mentally and emotionally. I ate healthy, did physio, rested as best I could, exercised (even through chemo), and went consistently to (mental health) therapy sessions with a specialized oncologist Social Worker. I thought I was taking care of myself, and I was, so I wasn’t expecting what happened next.
It seems that after the whirlwind of treatment, there is a ‘picking up the pieces’ time. This is a time when one’s world, body and life seems foreign. And so ‘this’ happened: nothing and everything. Feeling oneself imploding and exploding. Silent on the outside yet inside one’s heart and mind is screaming. Happy that treatment is done, but filled with an unexpected sadness and fear. Here, but absent. Confused and out of sync with who one is, your relations with others and the life you have lived. ‘This’ is the thing no one talks about after treatment, or the majority of it in my case, is done.
I shared with my oncologist Social Worker what I was feeling and thinking. She informed me that what was happening to me is common. Then I ask, “Why didn’t I know about it?” I have piles of books and pamphlets on what I was to expect for my cancer surgery and its recovery, as well as what to anticipate for chemotherapy and radiation. Then treatment ends, but no one tells you that you will be ‘picking up the pieces’ of their life because the tornado of treatments.
Why aren’t people told about this challenging mental and emotional recovery of after cancer treatment? As I mentioned I have piles of books I used as reference to help me through the treatment phase. It wasn’t until I was in the throes of recovery confusion and pain that I went searching for help (via books) to get me out of the pile of sh*t I found myself under. I only found two! TWO!!!! And they were both titled “Picking Up the Pieces.”
So, how does one find their way again? I think the key is to focus on wellness of mind, body and spirit. So here is what I did, and am doing, to recover from the aftermath of the cancer journey carnage.
1. Where and when can I talk (regularly) to a professional? There is a huge stigma towards mental health issues. It needs to end. Sometimes things in the body break and are unwell. For example, I had cancer and so I got treatment to rid it from my body. The surgery removed the tumour, and the chemo, radiation, Herceptin IV and cancer medications focused themselves on the hole that remained. Going to talk therapy, one can deal with the emotional hole left behind.
2. How can I rest to rejuvenate and recharge? Yes, that is sleep, but that is also permission to leave the laundry until tomorrow (or the next day). Take time for yourself. Do things that nurture and support your mind, body and spirit. Read. Watch your favorite shows on TV. Meditate. Have a Reiki session. Go for a massage. Rest is not an option, it is a prerequisite in getting well.
3. What ways can I feed my body well? Yes, have the occasional treat (yum!) and eat for enjoyment, but also fuel your body with nutrient rich foods. Food fuels and repairs your body (and your body has been through so much).
4. How can I fit fitness into my day? I’m not talking about running a marathon, but if you want to, go ahead. Especially at these moments of recovery, when one’s energy is very low, it is still important to move your body. Slowly, gently and according to your body. But please move, because studies have shown it helps one’s mind, emotions and the body in general. (P.S. It really does!!!)
5. What brings me fulfillment? This is a big word, and if you are like me, this cancer journey kinda put things into a tail spin. At this moment, I am relearning how to do things for the sole purpose of my happiness, peace and love. It is unnerving because I thought I knew who I was and where I was going, but it seems I am relooking at my life and finding out what really works for me and what doesn’t. I am beginning to let go of what no longer serves/nurtures me, and focusing on what does.
6. How can I reconnect with the world (i.e. others!)? Often when we go through trying times we can isolate ourselves. This is a natural tendency to ‘lick our wounds’ in privacy. But there comes a time when we need to step out again. I know for me isolation is a wonderful way to rest, recharge and rethink, but to stay too long in this position isn’t healthy. As you can see, it is only now that I am reaching out to the world again. And I intend to do it in baby steps because I know my energy levels, due to treatment, are not where they used to be. And maybe they never will return, but I will do what I can, when I can.
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I welcome your comments and input...as i can always learn more and I value what others have to say. Please share your ideas and/or story...as you may help someone.
Light and Love to all...
Former Comments:
from Jenni J: I think you are so busy getting through the process of treatment and being a "good" patient, that when you are finally done your body and mind realize how exhausted they are. Take good care of yourself, Barbara. If I were in Canada I would bring you homemade soup and muffins. Love from Jenni in Albuquerque
from Superior: Barbara your story was very inspirational because you go on with your life despite the condition that you have. Having a breast cancer is one of the hardest condition to fight for because it is deadly. I really believe that everyone of us has their own problem because we have different lives and it can affect us everyday. Good thing you've included here some answers to the frequently asked questions of those people who are in this condition. Reconnecting with the world or people we love with this condition is really hard because you know that there might be something, might happen to you to be totally disconnected with them, but I admire your strength because you did it not only to people you love but also for your readers
from Susan C: Barb, you have a wonderful spirit. You have inspired many and shared in your journey. It has not been an easy one, but you have educated many and now a lot of people have some insight because of your unselfishness. I have always believed that you were kind for as long as I have known you. My prayers are with you. And guess what, you do deserve muffins and homemade soup.
Godbless...
from Lynne M: Hi Barb,
Thanks for sharing this. As usual you share your most inner feelings with those who care about you. I noticed you were not around on FB, and hoped it was because you were taking the time to heal. It makes me happy to read your words. It certainly has helped open my eyes to the stress of the process. Take small steps, even retreat at times, the people who are your friends understand, and will be there for you when you feel strong enough to step fully into the social world. 💜💜💜💜💜
from Ray: Barb, one of these days Cancer may come to me and touch me.
If not for you and your written documentation I would have no idea what you are going through and inspite of your documentation I still have yet to know what you are going through - but head knowledge rmeains just that - at least your sharing has raised in me and your many precious friends that heightened sense of awareness of how Cancer can bring people through ups and downs on that crazy illogical emotional roller-coaster ride.
WHen Cancer does come to my attention within my bodily system I would hope it is either quickly diagnosed at an early stage and be removed for good, or that it will take me HOME fast and furious (to quote the title of a popular Hollywood series of feature action films)
I don;t wish to be driving my body around and hoping to linger around - I would ask for be Let Go in the fastest way possible.
However for the here and now I am praying hard for you that you WILL pick up those pieces and gather yourself to Rest, Rest, Rest and Rest yourself -- yepp, laundry and house chores CAN wait - damn they don;t even factor when a person needs to have peace, tranquility and quietness for the soul's rejuvenation.
Take good care dear beautiful and brave friend
you always have my prayer supports, no matter where I am -- you're not very far from my thoughts and prayers.....hugs
from Linda: You are my mentor Barbara, even though we only met for brief periods on a couple occasions. I haven't endured a portion of what you have. But I have been unfortunate enough to suffer a Sulfa drug reaction and infection post surgery and post radiation. I've always been a positive thinker. But I find I'm struggling with anxiety of recurrence, inspite of what the experts tell me. One day at a time, one day at a time. Sleep well tonight my friend.
from Cheri: Barbara you are such a strong inspiration women
You were my support when I was going through my radiation treatment
I have missed you
Thanks for sharing these details
Take care
Hugs
from Carlanda: Barb, you are so strong. Xo
from Penny: I have thought of you often in the past couple months wondering how you were doing. Seems to me we are in the same place and no one in my circle can really understand what I am feeling. Sometimes I can go all day without thinking holy crap I made it through surgery, chemo and radiation...what now? Then I have complete meltdowns when I realize that holy crap...I had stage IIIC breast cancer and it happens during the weirdest times, like when I'm working out. So yes, we are picking up the pieces of our lives, but there are pieces missing and I can't quite put names to what those pieces were...it really sucks big time as I am not one to wallow in self pity, but that's what I want to do now more than I did while I was undergoing chemo and radiation. And I hate that...I just want my old happy self back. Don't know if this helps, but I'm glad to read your posts and know I'm not alone.
from Jackie A: Barbara, I think of you often. I haven't experienced the severe health issues that you've had to deal with but I have been hit hard and often over the past 18 months with the loss of loved ones and my emotional self is feeling bruised and battered, So that piece I understand. I, too, am trying to do things that nourish my soul and body hoping that I will come out on the other side a person who is once again happy. Until then, I try to not judge myself for being less than that right now. May we give each other strength. Love you . . .
from Custom: I am sure that such letter will help many people to get through and to find power in order to continue live a normal life. Thanks a lot for your blog and this online essay sharing
from Luton: It would affect a lot to the mind.
from Port: Thank you for sharing such a important information with us
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