Oh, the Things They Don't Tell You

It has now been just over a year since my breast cancer treatment ended!  My one-year follow-up appointments are done, and I am happy to report that I am still “NED” (No Evidence of Disease).

Having gone through the dark tunnel of cancer, I can definitely say that when you come out into the light on the other side, life is different.  You are different.  Your perspective is different.  Your priorities are different.  And the focus on your health is different.

During cancer treatment, the doctors tell you the high-level things:  Chemo and radiation increase your risk of leukemia.  Chemo can cause permanent nerve damage. Chemo and radiation can cause heart damage.  Radiation can cause lymphedema, pneumonitis and rib fractures.  Endocrine therapy can cause blood clots and increase your risk of uterine/cervical/ovarian cancer.  Etc., etc., etc. ……. 

Okay – got that.  What they don’t tell you is that the lingering fatigue and chemo brain can take YEARS to go away and can hit you with no warning.  That your cognitive functioning may never be the same as before.  That 25-30% of breast cancer patients who receive the “red devil” chemo develop fibromyalgia (yes, I now have this) and experience horrible bone and joint pain.  That the radiated breast will be a different shape, colour, texture and have skin issues.  That your white blood cell counts may never come back up to a “normal” level and you could remain immunocompromised permanently.  All of this would have been nice to know before hand.  It wouldn’t have changed any decisions with respect to my treatment plan but it certainly would have eliminated a whole bunch of frustration and anxiety. 

I can’t tell you how many times in the past year I have been sent into a tizzy because my sick boobie was painful, swollen, red and had cracked/crusty skin.  Or how many times I have beaten myself up because I couldn’t remember some critical detail at work or get my thoughts organized.  Or how many times the lingering fatigue was so bad I simple couldn’t move or even string a sentence together.  Or how many times I have been woken up at night by bone/joint pain in my pelvis, back and hips.  Or how many times I had difficulty following a simple sewing or knitting pattern.  Or the frustration in knowing that I will simply have to learn to live with these late-term side effects.

So, in an effort to manage all of this, I have joined a yoga studio (boy, am I out of shape – lol), have attempted to clean up my diet (if I can’t pronounce it, I shouldn’t be eating it), have started on a medication that will help the bone/joint pain at night so I can sleep better, and I am making strides to reduce my stress level (changes could be on the horizon re: work).

On a much more positive note, I have started my volunteering journey with After Breast Cancer.  ABC provides mastectomy supplies to women who otherwise can’t afford them, among so many other things such as cultivating a community of survivors who support each other.  One of ABC’s major fundraising initiatives is a calendar featuring 13 survivors and their stories.  Well – I have been selected to participate in the calendar, which will include a make-over, fashion stylist and a professional photoshoot!  I am pretty excited about this and more will be shared about it in a future blog post. 

I'm also continuing with volunteering with Victoria’s Quilts Canada, who provide handmade quilts to cancer patients at no charge.  So far, I have completed three quilt tops and have hand stitched the binding on four quilts. 

Cheers for now!

 Pam

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