I remember being really frustrated when nobody told me that you had to deliver the placenta after you give birth. Seriously..out of all the woman who have given birth, nobody told me about the second round of contractions and pain! I sort of feel the same way with breast cancer. Everyone, including myself was so focused on getting through treatment, that you don't think about life post treatment. After surviving 5 months of chemo, four surgeries, 21 rounds of proton beam, people assume that you recover and go back to normal. What nobody talks about, is that you never go back to normal. Especially those of us with hormone positive cancers. I am thankful that my oncologist always talked about quality of life with every treatment and clinical trial - but sadly it is the pharmaceuticals that are my demon.
Since I am in my forties, Zolodex ($1900 per month in USA - I get the same Injection from France for 100 Euros) is implanted via injection every month, right into my stomach. This blocks my ovaries from producing estrogen. I then take another pharmaceutical called Letrozole to block my cells from receiving estrogen. This will reduce a reoccurrence by about 40%. Letrozole and I still haven't come to terms with each other - even after I moved the pills into an "Advil" bottle
thinking I could "Jedi" mind trim myself. Zoladex is also a beast, as that needle is THICK and requires mental prepping each time it is injected.
Besides jumping off the Pharma induced menopause cliff, I get joint pain (fingers, elbows, knees), dryness - even in the eyes and muscles stiffness where you literally can't get out of bed too quickly otherwise you will fall down. All of this comes with more risks - such as osteoporosis, heart disease and male patterned baldness (love the last one :)). Most of this is manageable with daily yoga and nutrition, but the minute I become lazy or if I overdo it with exercise/activities it creeps up.
My left arm always needs love an attention - daily stretching (again-yin yoga has saved me) keeps the radiation induced stiffness from creeping back. I am thankful I had a great OT who showed me the right moves after surgery as I have full range of motion and no cording. I have to keep my left arm free of bug bites, scratches, burns...basically anything that can cause an infection as my lymph nodes no longer exist there. I sometimes wake at night and reach for my wedding ring, praying my arm hasn't swelled up like an elephant leg. So far so good, but I will never be out of the clear for that.
My breasts are fine - no pain minus where my port was and where the expander rubs up against that area. The phantom pain has all gone away with CBD oil and my only real issue comes from the expander which will be removed in July. I finally feel comfortable doing activities again but have to take it slow as if I don't, I pay for it the next day.
With all of this, I still fee so lucky to be alive and to have the quality of life that I have. I am gradually starting to give back and hope to launch our first breast cancer activity in Senegal in 2020. Putting it out there so it is real!