Sunday, January 20, 2013

This Shit Is Getting Real

Like many people, before I go to bed at night I have a hard time quieting my mind. Only now the thoughts I have before I fall asleep are no longer the simple silly worries and ponderings that I would have in my pre-cancer days. At night I often have enough internal banter brewing that I could write a blog post in my head. But lately I have been so busy I just haven't had any time to write my thoughts down... which has actually been causing a bit of frustration because I have really felt like I need to get a bunch of stuff off my chest. (there is a twisted unintentional pun in that last sentence)

Because I am pressed for time this morning (off to the city once again for appointments) I think I am just gonna make this a random thought post.

First few thoughts of the day:

  • I hate taking BC Ferries. I hate traveling to Vancouver. I hate the line up. I hate the waiting. I hate the panic I feel whenever I am sitting on that bloody boat. I hate the anxiety, the worry and the fact that everything about taking that stupid ferry 'ride' reminds me of my trips for appointments and the fact that I have had cancer.
  • My implant is driving me crazy. It's uncomfortable. It's tightened up making it really hard to reach and stretch. My armpit hurts and tingles. My nerves are hurting where the implant meets my under arm area all the way up my arm. I can't lay on my side or front. It aches. It's cold. And it feels like I have a frozen shot-putt attached to my chest.
  • As I said, I have been busy. I think busy could be good. But in my case it has been overwhelming. I am the type of person who needs to have a few days in my week where NOTHING is penciled in my day-timer. And ever since January began it has been appointment after appointment, meeting after meeting, chore after chore, paperwork after paperwork. A lot of this is by choice, yes. But what I am starting to figure out is that maybe I have been over-doing it.  
  • I attempted to find some joy yesterday by picking up the paint brush and doing a little 5"x 5" canvas painting. Sadly I felt zero satisfaction after it was complete. 
  • Even though it's 3 months away, I am terrified to have my next bone scan. The thought of it haunts me daily as I play out the movies of what could happen in my head.
  • Tamoxifuck is gracing me with hot flashes, mood swings, night sweats, insomnia, joint pain and bad dreams.
  • I think I am slowly conquering the insomnia I had since Christmas. With a little help from my friend Ativan. 
  • I feel lost. I feel scared. I feel anxious. I feel tired and flat.
  • I don't know what I am doing. 

Back in November I made the plunge to go back on Facebook after a 3 year break. I did this because I wanted to start a private group for people dealing with cancer. The group started out with 15 people... some I know in person, some from blog-world and some I met through Instagram. Since then it has grown and the group has close to 70 members now. All types of cancer. All ages. All there for the same reason... to share, support and feel understood.

Recently a fellow member shared this caption with the group:

Remember: your future is built one step at a time. Step one is finding and creating your new normal. How long it takes to get there will reveal itself along the way. Progress isn't always steady, with one day better than the day past. You can take three steps forward, one step back, no step the next day, an then a side step before you make more forward progress again. There is no fixed number for how long it takes to get back to normal. My rule of thumb is that it takes at least as long as the time from diagnosis through the end of treatment. As long as your overall path is forward, take comfort. Your patience and persistence will pay off. Build momentum whenever you can. Along the way you'll be rewarded as you see glimpses of your old self and piece together a new vision for yourself and your future.

Today and the last few days feeling like steps backwards - I really needed to read that this morning.


  1. Jeez, I'm with you on all of this, Ashley! I can't remember who wrote it, but one girl said she had asked her doctor for a different brand of Tamoxifen and she found the side effects much better. She had tried 3 different brands so maybe ask if you can try a new brand? I've only been on it a month and I get really bad hot flushes and night sweats but none of the other stuff yet (unless it's Tamoxifen that's making me depressed...) So worth trying something new.

    As for the other stuff, yes, I feel ya. I've been dwelling on the past a lot lately, so I needed this statement too! Some days the entire topic and concept of this cancer is just too overwhelming, too big and too scary. Other days I can handle it but sometimes it just seems like a fog of possibilities and no way to win. But we will get there. You have better days. I went for a little run today (it's freezing outside) and it really helped. Hope you get some fresh air and have a much better next few days. Know that you're not alone in this!

    1. Hey Laura - I know there are other types of drugs other than Tamoxifen but I believe they are for post-menopausal women. I will check with my oncologist in February when I see her. I hear that the side effects do get better after several months so hopefully that is the case. I am surprised they started you on it before you were finished treatment. It's interesting how differently things are done in other countries.

      I feel the same. Some days I am UP and some days I am just soooo down... I just get so angry that this has happened at times. It is hard to believe even. Appreciate your comforting words... Hope you are staying warm over there! :)

  2. Oh sweet lady! I'm sorry you're having a rough time. I can totally relate to your anxiety though. I haven't finished treatment and I'm already worrying about how I'm going to cope with the future. It is overwhelming! I do hope that you give yourself a break. If you feel that maybe you have taken too much hay on your fork, there's no shame in letting some things go. Take care of your self okay?!

    I'm sorry you didn't find any satisfaction in your painting because it is so important to have a some sort of outlet. Photography has been really helping through chemo. I hope you'll find some joy in a new creative project soon!

    That quote from the CC group, it is so true and describes everything perfectly! Soon you'll be taking a few step forwards again. If you're not feeling better in three days I'm coming over with the big girl panties!

    1. Thanks Ciel... I am definitely learning that I can't do EVERYTHING that I think I 'should' be doing :) I seem to have forgotten all about finding joy these days too... gotta get back to that!

      Your photography is amazing. I love that you are documenting your journey this way. They are truly beautiful images.

      hehe... you should just come over here anyway! big girl knickers or not! We can drink tea and watch chick flicks. hehe :)


  3. Oh honey, big hugs. I know just how you are feeling, except of course for the implant stuff. It's a tough road and doesn't suddenly get easy when the treatments are done. Would lunch next time you are in the city help?


    1. Hey Michelle... hugs right back atcha! I am sorry you are having a tough time with rads.

      I am in the city again on Feb 6 and Feb 13. The 13th would probably work to meet. I'll be getting my nipple recon consult with our lovely PS around 12:30pm :) Let's keep in touch. Perhaps we will be able to meet up.

      Sending you healing energy for those burns.


  4. dear ashley,

    what you wrote about trying to find your way really resonated with me. so many unknowns, so many steps forward, then at times, just as many back to where we started. my husband and i have 2 incurable cancers, his is multiple myeloma, mine stage IV met BC. happily, hugh is in CR (complete response after 2 stem cell transplants, and me, NED after finishing chemo, surgery and radiation in august). maybe what helped us might help you. we never liked thinking about the "new normal", it felt too clinical, and seems to be a constant reference to life changed, a life that's never coming back. we both NEEDED to look back and answer the questions - did it all REALLY happen? and "how did we DO it?" been there, have had some measure of resolution, but some areas are still a work in progress.

    what appealed to us, what felt like such a good fit was "life re-invented"; it feels like something we CHOOSE, rather than something imposed on us by our illnesses, as if we are diminished and always wishing for what came "before cancer". it is a reminder that we have a second chance to live the hell out of life, to create just what we want our lives together to be. this is no polyanna, denial, cancer was a gift shit. it's a promise to ourselves that we live in the present AND make plans for the future , that we're ready to learn new things, and do what we can to pay it forward. it's been slow going, no doubt about it - we still run from pillar to post with medical appointments, still have days in a funk, and sometimes worry about the what if's. but life re-invented has invited us to hold on tight to life and enjoy whatever happiness we choose to create.

    be good to yourself, ashley. and keep writing your story. i will keep you close to my heart, and sending you waves and waves of healing, comfort, and the ability to find your own compass. you are brave and beautiful, and you will find your way.

    1. I really liked what you said about "life re-invented". That's a nicer way of putting it. Thanks for sharing your experience. I am still working on "living the hell out of life." Reading a book called Picking Up The Pieces right now which is helping me feel less crazy.

      Thanks so much for sharing :)