Pain, Pain and More Pain After Double Mastectomy

Pain After Double Mastectomy

It’s time to post about the surgical pain from the mastectomy  (i.e., double booby amputation!) and reconstruction. I say that “it’s time” because now, a full 19 days post-op, I feel as if I have a little bit (little being the operative word here) of a handle on this issue.  Pathetic.  Absolutely pathetic.

Pathetic because while surgery is physically challenging, the key to an efficient, expedient and healthy recovery is aggressive pain management. When I say aggressive management, I mean 1000%  focus with unwavering tenacity.

Suffice it to say that my pain management has been abhorrent. Beyond description bad. The worst imaginable.

Why you ask?  I have NO IDEA.  I took every single precaution to ensure proper pain management. I talked with every single physician I met with and discussed the importance-the PRIORITY-of pain management post amputation and reconstruction. I told every doctor EXACTLY what kind of pain medicine I wanted and when.

As I was being wheeled into surgery, I literally told the man mopping the floor exactly what I wanted for my pain management.  He looked at me like a total whackadoo!

(On a side note, two years ago, I had spinal meningitis – another ridiculous story. However, I had to take a variety of different pain management medications to get the right pain relief. Therefore, I KNOW what pain medications work for me.)

“Nurses on the floor are trained in pain management,” I was told by one physician. NO THEY ARE NOT, I said firmly.

I KNOW about inadequate pain management training because this used to be my job which is why I am telling you exactly what I want and when, I said.

Tons and tons of academic studies demonstrate the failure of clinicians to evaluate or appreciate the severity of pain resulting in inaccurate pain control. Studies further demonstrate a lack of common language to describe pain, lack of commitment to pain management as a priority and failure to use adequate and/or appropriate medication. All of these studies, books and anything else related to this topic are organized alphabetically in my library, but pain precludes me from having the energy to list them, so you’ll just have to trust me.

Pain is BAD. BAD. BAD. Pain interrupts sleep. Pain decreases mobility. Pain decreases endurance and energy.  Pain strains resources by producing such symptoms as fatigue, depression, constipation.  Pain can also impair the immune response – and your ability to get BETTER.  Unrelieved pain may cause permanent damage to the nervous system. Pain is BAD. REALLY BAD.

Let me give you a little background on (part of) my professional life.  For the past 10+ years, I have been a hospice nurse. This profession has been an honor and a gift to my life (and has given me a tremendous amount of perspective on this FBC experience – because I know that things, no matter how dire they may seem, can ALWAYS be worse).

For the last seven glorious years, I had the honor and privilege of working as an educator with ELNEC (The End-of-Life Nursing Education Consortium), based at the City of Hope National Medical Center.

My area of focus has been pediatrics.  Yes, dying children.  For whatever reason, I have been given a gift which is the capacity to be able to work with children who are dying or children of adults who are dying.

Totally diverting from the topic at hand (pain) for a minute, try for just a second imagining being at a cocktail party and someone asking what I do for work.  interested in continuing a conversation (which is 99% of the time!), I would say that I am a pediatric nurse.  That response would usually evoke an “Awwww, that’s so sweet.”

If not so interested in continuing a conversation (about 1% of the time, but when that happens it is a STRONG reaction!), I would say that (truthfully) I am a pediatric hospice nurse  & that means that I work with dying children. That person would slowly, or sometimes quickly, make an about face and run in the opposite direction.

Anyway, back to how my professional nursing experience is involved in my current post-surgical experience. Virtually nothing positive can happen (relationship interaction, activities of daily living, quality of life activities, etc.) until physical pain is managed. Therefore, addressing and solving pain issues is the very first place to begin when working with a patient.

Needless pain is a tragedy when good research (more references in my office) has taught so much about the nature of pain and the role of analgesics (pain medicine) and other therapeutic modalities in its management. Appropriate medications and supportive therapy can see to it that pain need not fill the every waking moment of consciousness…which has been the case me for 16 brutal days.

Below is a Quality of LIfe model developed by my brilliant nurse colleague, Dr. Betty Ferrell at the City of Hope.  This model describes the impact that pain has on all aspects of life (if you click on it, you will be able to see an enlarged version).

City of Hope Pain-Quality of Life model.

This Model resplendently demonstrates how profoundly pain has the capacity to impact every aspect of life.

Below, I am utilizing the model above to share with you how my pain has impacted (or inhibited) my healing process.  I’m doing this because I would like for you to be able to recognize the impact of pain in yourself or your loved ones.

Impact of Pain on: Physical Well Being & Symptoms:

  • Functional Ability – I can brush my teeth by myself!  …and if it’s a good day, I can take some photographs of beautiful flowers and our 4 3/4 daughter. That’s just about it for right now. On Thanksgiving, however, we went to a friend’s home for about 45 minutes. Not only did I feel like I could barely put three words together, but I came home and had to sleep for almost 2 hours. The visit did, however, fill me with love, light and ocean air.
  • Strength/Fatigue – Zero Strength. Incessant Fatigue
  • Sleep & Rest – Constant need for sleep. Not in the least bit rested.
  • Appetite – None…which is a total F-bomb.  Appetite is exactly what I need now because I have to prepare my body for upcoming chemotherapy.
  • Constipation – Oh dear friends, I can’t even begin to tell you the extent to which this topic has tapped my brain and my bowels. BRUTAL! BRUTAL! BRUTAL! By the way, when you are on pain meds, you must take colace AND senekot.  Why?  Well, because one is a stool softener (colace) and one is a stool mover (senekot).  You need BOTH to get things moving.  For some uninformed reason, hospitals consistently only prescribe colace. Inane. Someone has to tell you the truth…might as well be me!

Impact of Pain on:Psychological Well Being

  • Anxiety – TONS (but not the freak-out obsessive kind). Just general anxiety because I am at the point now of wondering how long this will last. Will it end?  (Yes, cognitively, I know it will end, but the longer one has pain, the longer she thinks it will never go away.) Oh, and pain in and of itself produces anxiety. Sometimes I really think I’m going to lose every F-bomb marble.
  • Depression – I am really, really sad. I’m doing my best at conquering my mind over matter; however, my brain doesn’t work all that well right now, which produces quite the conundrum.  There are days (like today) when I am just profoundly sad because I hurt so much.
  • Enjoyment – My enjoyment comes from finding SL’s (Silver Linings)…which, by the way, are everywhere when you look for them (and trust me, I am looking!!!)  I thoroughly enjoy visits with friends. And laughter.  Laughter is the best F-bomb antidote to pain!  For sure!
  • Pain Distress – Uh…Yeaaaaaaah.  Especially in the hospital when I went for 8+ hours without ANY pain medicine post surgery.  I’m not F-bomb kidding.
  • Happiness – Happiness and Enjoyment both come from looking for and finding SL’s.  Looking everywhere, all the time, because when I find them, I am happy.
  • Fear -Pain causes fear.  FBC (F-bomb Breast Cancer) does not evoke fear in me.  I’m simply not afraid of it.  Having pain literally causes fear.
  • Cognition/Attention – Huh? What?  I forgot what we’re talking about.

Impact of Pain on:Social Well Being

  • Caregiver Burden – I am absolutely beyond words grateful for The Husband. Unimaginably thankful. Profoundly appreciative.  How many words and ways are there to describe this gratitude? I am also so sad for what I am putting him through. I just am. Every single night (EVERY SINGLE NIGHT), he gets up in the middle of the night to give me pain medicine. 3:00 am:  “Honey, here is your medicine.  Let me lift your head for you to drink your water.  Good night. I love you.”  He props my pillows.  He tells me he loves me (ALL THE TIME!). He showers me. When he washes my hair (and my eyes are closed), he kisses my forehead. His capacity for caregiving is beyond my wildest imagination and I am filled with the deepest sense of awe, love and gratitude.
  • Affection/Sexual Function – Well, I’m all about “Monster 4 3/4 leg hugs” (which I LOVE).  Sexual function? REALLY? WTF? (NO pun intended!)
  • Appearance – Oh come on now. Geez-Louise.  Well, SL: Two girlfriends have given me the cutest jammies imaginable.  Between that and avoiding every mirror, I’m hanging in there.

Impact of Pain on:Spiritual Well Being

  • Suffering – Got it.  Plenty of it. However, I am fighting it with every cell in my body. For me, suffering is prevented by looking outdoors at the beautiful mountains or the magnificent ocean.  It is prevented by reading daily reflections in a wonderful book called “The Book of Awakening” by Mark Nepo (given so thoughtfully to me by a friend).
  • Meaning of Pain – I told a friend today that for me it’s not about asking why or looking back.  Now is the time to ask where to go and to humbly ask for guidance on getting there.
  • Religiosity – My religiosity is coming from 4 3/4.  We say our prayers of gratitude and hope every day, sometimes multiple times in a day.  How great of a SL is that?
  • Transcendence – I have always come from a philosophical acceptance that the universe gives us exactly what we need, exactly when we need it. It’s just how I roll. So, while this circumstance wouldn’t be my vision of the ideal situation, I know that for reasons yet to be revealed, I am exactly where I need to be. (It is still FBC, though!)

My final note about pain has to deal with reasons the people avoid pain medication. I know so many people who have a fear of taking pain medicine.  These fears are some of the biggest barriers to taking pain medicine or engaging in other pain relieving modalities. “I’m so afraid of getting hooked,” they say.  “Pain medicine will make me loopy,” they anticipate.

Let me take this opportunity to describe the difference between Addiction, Physical Dependence and Tolerance (ELNEC Curriculum, 2009, website listed above).

  • Addiction is a primary, chronic disease of brain reward, motivation, memory and related circuitry. It has genetic, psychosocial, and environmental factors influencing its development and manifestations. Addiction is characterized by behaviors that include one or more of the following:
  1. Impaired control over drug use
  2. Compulsive use
  3. Continued use despite harm, and craving
  4. People with true addiction disorders often follow a progressive self destructive spiral out of control that frequently involves loss of job, loss of relationships, financial and legal difficulties, and escalating physical and psychiatric health issues.
  • Tolerance is a state of adaptation in which exposure to a drug over time includes changes that result in a decrease in one or more of the drug’s effects. In other words, a patient’s reaction to a drug decreases so that larger doses re required to achieve the same effect. Drug tolerance is REVERSIBLE.  Drug tolerance is NOT addiction.
  • Physical dependence is a state of adaptation in which abruptly stopping a drug, rapidly reducing the dose, changes in metabolism and/or excretion that quickly decrease in the blood levels of a drug, or administering an antagonist (e.g., Narcan) causes a specific withdrawal syndrome.  This withdrawal syndrome is normal and predictable  Physical withdrawal can be avoided by systematically and slowly lowering the dose of the opioid over time such that the blood level slowly decreases. Treatment for physical dependence depends upon the drug being withdrawn and often includes administration of another drug. Your healthcare team will manage a patients reduction and ultimate elimination of pain medication in a safe and healthful way.

So if you’ve managed to make it through this entire post, you may wonder WTF?  Why is she still in pain?  Great F-bomb question.  We are taking this topic day-by-day, hour-by-hour, minute-by-minute.

Pain management is not an exact science. Doctors and nurses have different levels of training, understanding and awareness on this very complex topic, including the what, when, why and how of pain assessment and management.

As a patient, I am balancing the need to be free from pain with my desire for physical, psychological, social and spiritual well-being.  (Plus, I sure would like to relieve this constipation!!!)

Could I take more meds and be free from this constant pain?  Yes, but at what cost? That is the illusive balance I find myself facing 19 days post-amputation and reconstruction.

Next week, when we meet with my current and future doctors, it will continue to be the topic of conversation.

Wishing you all a wonderful, SL-filled, pain-free day.

Leave a comment


  1. says

    I had a bilateral mastectomy with immediate reconstruction and tissue expanders. 9 years ago. I will be 40 at the end of the month. I was diagnosed the day before my 31st birthday, 8 month after I lost my most precious and beautiful mother to her own battle with FBC. I did chemo for 6 months before I had the surgery. It was actually pretty amazing to feel the FBC-Lump shrink. The most incredible part of it all was when the surgeon called me to let me know they had found NOTHING, NOT 1 MEASLY FBC CELL in my amputated breast tissue! The mothership had been destroyed, obliterated! And I know a healing from Our Lord Jesus Christ! But there was, however, one drawback to doing chemo before surgery. I developed the slightest tolerance to pain medication. My oncologist had prescribed gobs and gobs of pain medication, I only filled one bottle that would have lasted me the entire 6 months as I took very few & there were 90 in each bottle! I had never taken a pain pill or illegal drug in my life. I only took a few of them when I had to receive the blasted “Nulasta” injestion that helps your body produce white blood cells which is great, except you feel like you’ve been run over by a truck for several days after. The injection was given every 2 weeks the day after chemo. I have 2 beautiful boys (who were 3&6 at the time) and am so very happily married to my soul mate since ago 22. However, he had a couple of his own demons and actually stole, yes stole my pain meds that I left in the medicine cabinet, safely out of reach from my children. I was devastated to say the least. He denied it even though I obviously had to refill my meds when I had hardly used them. I didn’t catch on until refill #3. Maybe my mind couldn’t comprehend it. I confronted him & he finally admitted it. I know some people would say they couldn’t forgive something like that, but he was my rock. I think he regressed into his teenage years when he was abusing pain meds after a broken back & knew they could offer an escape from the world, from my FBC reality. I told him at one point I would be having my sister stay with me at the hospital instead of him for the surgery & she’d care for me at home because I couldn’t be worrying about someone STEALING my pain medication, I knew it was going to be bad especially after my body was already worn plum out from all that chemo. That really got him. One of few times I’ve seen him cry in our now 19 years together. Anyway, to the pain after the surgery; absolutely horrid. Keep in mind I never even filled my prescriptions for pain meds after giving birth to either of my boys. I just have a very high tolerance to pain. Oh, I will say I took the loratabs they gave me while in the hospital 6 months pregnant with my 2nd son, while I suffered from viral form of meningitis. They say I would have normally been loaded up with pain meds and muscle relaxers, but because I was pregnant I could only have 1 lortab 5 every few hours. And that was fine by me, my exploding head pain was now slightly manageable with that. I was hospitalized for 5 days.Thank The Lord my baby was not affected at all from that illness. Anyway, I remember waking after my mastectomy and I couldn’t move. I wanted to scream out. I finally did. I had a pump i could press for pain medicine but it didnt seem to give any relief at all! And they removed it after 12 hours saying that was the way it went.Then they gave me one Percocet 7.5 every 6 hours. Then they wanted me to get up & use the restroom. I couldn’t. The nurses simply couldn’t offer the help I needed, they didn’t have the strength at my 5’6 120lbs frame. Thin, but kinda tall. And difficult when my body was complete heavy weight I couldn’t offer any strength I was completely dependant! My husband eventually learned how to get me up, he had to put his arms a certain way to avoid the two 12″cuts in my back where the tissue & muscle to form new breasts had been cut out, and lift me straight up into standing position. I passed out from the pain once. That was the 1 & only time I received a shot of morphine. They eventually gave me an additional pill after that episode, something called demerol. It helped. When I returned home 5 days later, still bald & skinny from chemo but always insisting on wearing my long blonde wig so I could look “normal”, they gave me lortab 5’s. I wrote down every dose thinking that was the way it went when you couldn’t remember one day from the next because of the pain. I took exactly as prescribed. I called the doctor about the pain, they said get over it & you’ll be cut off in 2 weeks anyway to avoid addiction, & “those pills slow everything down & hinder healing”. I wondered if the person on the other line had ever had her breasts amputated. Same as I wondered about the nurses in the hospital who had to “double-check” with the doctor before administrating the new Demerol pain med because “that can’t be right to have along with Percocet 7.5!”(it took her 2 hours to check, before the relief was given. But I didn’t wonder about the nurse who handed me 2 of the Demerol, 1 for the 2 hour ride home in the car,1 for later that night. She risked alot to do that for me, I didn’t even ask for such a thing! She was the best. She saw my suffering. She was an angel. I did eventually develop an addiction, dependance, whatever you want to call it, on opioid medication. But this addiction was the result of the deformed, rabid view this country now has on opioid pain meds. Their thinking is the less medication we give for the pain management & the more control we have over their pain, the less likely patient will develop an addiction. Leaving someone who just had their breasts amputated, and had their back cut to salvage muscle&tissue, without proper pain medication is horrid torture. Just look at the statistics of opioid problems in this country, the problems rise as the government gains more control. I called my oncologist when the plastic surgeon cut my pain meds after 2 weeks. Yes,14 days. I still couldn’t even get myself out of bed without assistance! So they cut my only hope of pain relief-those oh-so-helpful(NOT) Lortab-5’s that I was able to take every 6 hours. My oncologist called me in Percocet 10’s. A giant bottle. I found if I took 2 I could actually get out of the bed myself, I didn’t have to stand all day because I could now get up from a sitting position without assistance! My previous routine where hubby pulled me up from bed in the way only he could do every morning at 6am so he could leave for work & I could get boys off to school, was now replaced with the ability to actually be able to lie back down during day and get the rest my body so desperately needed! My sister was only able to keep the children for 1 week, & 5 of those days were in hospital so I was on my own after hubby returned to work same time kids returned home. I later learned when my friend came by to bring a lasagna 8 days after surgery & I was up and about, that she had a hospital bed at home with a morphine drip for 2 weeks after her surgery. I had Lortab-5’s. I began taking the pain meds from my oncologist regularly to control pain. Then I realized 2 months after surgery that I still had shooting, burning pain under my left arm that was not getting better as the post-op pain was. Diagnosed with “nerve damege/pain” from surgery. I took the pain pills for 3 years. THREE YEARS. When I took those pills, I could play with my boys, cook, clean,& had an endless amount of energy! And for the 1st time in my life, I was utterly happy! A true peace from within! Battle with Depression since my teen years was truly gone! I was eventually sent to pain care specialist after oncologist said they couldn’t prescribe anymore because they wanted me to get proper help. A bit too late on their part. But I don’t blame. At least I wasn’t in so much pain, though by then I’d learned I could take 2,3,4 pills at once and get pain relief even though I knew I was heading for trouble. The inner peace was now gone, I couldn’t find it anymore no matter how many pills I took. And the nerve pain was stabbing at me, a constant reminder that the pills weren’t working anymore. But my nagging thoughts remained: Must avoid pain. Can’t ever feel that pain again. Not that pain. Not lile that. I can’t do it again. Pain specialist put me on methadone. It really helped the nerve pain & I was off the pain-pill merry-go-round! No more ER trips to get another prescription since I had already run through the previous bottle too soon. But the word methadone terrified me! Only my husband knew all I’d been through with the pain meds. It was My Secret. And only he knows about the methadone, even to this day. Yes, 9 yrs later I’m still taking it. I’m gradually lowering my dose so I can finally be off this stuff. I had to stand in line a methadone clinic for a couple months after my pain care specialist cut me off. No reason why, I let him do all the yucky injected nerve blocks he wanted(no results for me, the area in so much pain was also completely numb!), & always clean urine tests(1st time I ever had to take one of those!), but he decided I was young & it was time to stop them. He gave me a months worth & said goodbye. One day I started crying at my check-up with my PCP Dr. & told him everything. That I was now standing in line every day paying $13 every day for my pain relief. I didn’t mind that I was standing next to heroin addicts, they were screwed the same as me, it was the people just going there to sell their methadone on the “street”. I learned it had value. I learned all about drugs & drug use in the fabulous “group counseling”they held. I remained silent & afraid. My PCP took over my methadone prescription, I am now down to 35mg/day. But at highest I was only 60mg/day. Most ppl at clinic were anywhere from 160-240 to give an idea. Anyway, I even gave birth to a 3rd son! He’s 3 now! His birth is an entirely different story. Actually had to have a c-section after 4, yes 4 days labor. A nurse accidentally administered”Stadol” to me for pain while in labor which sent me into immediate, terrifying, severe withdrawal from the methadone. I was so afraid, I was shaking uncontrollably, freezing cold to the bone, couldn’t move or talk! They changed my nurse after that & refused me any pain meds at all but I had epidural by then so I was ok. The withdrawal was awful & lated forever I was so afraid for my baby! They finally did c-section. They pulled out my epidural while in the recovery room as they needed to remove as quickly as possible since it had been in so long & I remember begging for pain medication. Nurse siad I can’t have anything until doctor o.k’s it.I waited for hours. I finally begged for tylenol, motrin, anything. She said no. I knew I was then labeled as a drug seeker because I was on methadone. But that dose of methadone just helps my nerve pain & also keeps me as “normal”. It is NOT A PROPER PAIN MEDICATION FOR POST-OP PAIN CONTROL! And yes, I informed them of the methadone medication upon arriving at hospital. It was a scheduled induction just like all my other births since I’ve been type I diabetic since age 12 when I dropped to 48lbs at 5’6. Again, another story lol! But I was sure to constantly remind everyone of 2 important factors of my health: I wear an insulin pump & am on methadone low-dose therapy. They decided I would receive nothing for pain after the c-section. Thank God I brought my own prescription bottle of methadone to the hospital as they didn’t even give me my normal daily dose until after I had my baby. They even handed my baby to me after they removed the epidural & wondered why I couldn’t hold him! Well, I’d just been cut open & have nothing for pain! I’m such an overprotective mother, too. And protectiveness hasn’t decreased since 1st baby like they say it should either lol! Anyway, I remember whispering to my hubby, “please take my beautiful baby off my chest I’m afraid I’m going to drop him after I pass out”. I was lying on the cot & they were wheeling me to recovery room. I did faint after hubby grabbed baby. They said “it’s probably because of the methadone you are on”. Anyway, my terrifying fear of mastectomy post-op pain had come true! Here I was 6 years later, fresh out of c-section without one drop of pain relief! All because of the uneducated staff. At release, my ob/gyn said “I can’t believe you went through this without any pain.meds that’s amazing!”, as if I had a choice? He then proceeded to offer me a prescription of Percocet 10’s. I declined. I didn’t need anything from them. I just wanted out. I naively went into the labor thinking all the doctors & hospital staff would know how to treat my pain if I were to have any. I never dreamed I’d need a c-section after 2 easy natural births. But they knew nothing. And honestly I didn’t know how to manage my pain,either. I later reseached & learned I should have been given pain medication the same as any other c-section patient. That I could have pain medication. I just couldn’t have Stadol because I would be sent into immediate withdrawals. And that was the one drop of pain relief they gave. The only wrong one I couldn’t have. I learned I might need a bit more of pain meds due to my tolerance. I always thought it would be a deadly mix to give opiods to a person an low-dose methadone therapy. Heck, they even give morphine & Percocet & everything else needed to heroin patients! I had been royally screwed for the 2nd time. It doesn’t matter anymore. The c-section pain didn’t last near as long as the mastectomy pain. I am so thankful for my beautiful life & my beautiful family. I haven’t shared any of this before, but felt compelled to share after reading your amazing story! I am going to pray for your speedy recovery, your ease through chemo, your quick healing & complete & total riddance of FBC! I’m not sure this will be posted since it’s so lengthy, but either way, it was so helpful to write it all down! The inadequate pain relief I was given as a bilateral mastectomy with reconstruction patient was such a horrific experience, that I actually continued to take pain medication when I finally did receive it, way beyond what I needed just to heal my soul from the agonizing pain I had endured. I knew I couldn’t survive that pain ever again, & I had to do everything I could to make sure I didn’t endure that pain. Coming from someone who never had any interest in trying any drug, who didn’t take pain pills when most people would just because I didn’t think I needed them. And when I did need them, when I was in the worst pain of my life, they acted like I was being a drug-seeking baby. It took me years to recover mentally & emotionally from that pain memory. And the road that the lack of post-op pain management eventually led me down. But you know what? I was healed! And even though the doctors did the chemo administration & did the surgery, God is who healed me! He healed me completely! Such a difference from what the doctors originally said at diagnosis! Jesus Christ Our Lord is here, He healed me, He is our savior, & I know we all have our own cross to bear! That is what develops our soul, develops our compassion, develops our Faith in Him. Some people have a much heavier cross than I, some people carry a much lighter one. But we all have our cross to bear! I will pray for all you beautiful, incredible FBC survivors! Everything will be ok, just keep your Faith in Him, & He will never desert you! God Bless you strong, amazing FBC survivors!

    • silverpen says

      Layla, thank you so much for sharing your story. I can’t begin to tell you how much it means to me. Sending all of my very best wishes for continued healing.

  2. Kerry Milius says

    I am a mastectomy with immediate reconstruction with tissue expanders. I historically have a very high pain tolerance so was extremely surprised how horrible the pain is. I was in recovery 3 hours trying to control my pain. I rated my pain a 7-8 once I got up to the floor. They gave me 4 mg of morphine 1 time then insisted I go to percocet. Did not work. Didn’t touch the pain. The pain scale of 1-10 doesn’t work. I guess I didn’t want them to think I was wimpy…(I too am a nurse) so I not intentionally under-rated my pain. The day I left the surgeon asked if they had tried…the nucynta that was ordered. Of course they had not. It did work much better. The bottom line I do not like the pain scale…it is very difficult for patients to use. And the nursing staff didn’t care so much about my pain…I think they were worried that I would have to stay longer if I didn’t take percocet.

  3. Melinda Paige Neu says

    I am 22 days post open bilateral mastectomy. The pain and sensitivity is killing me.
    I’m trying to decipher is it pain pain or nerve pain. My pain meds are not working at all. They seemed to in the beginning right after surgery but no more. And I’m sick of people acting like I’m lying or something. I’m ready to be done with this. And I’m sick of being constipated.

  4. Sharon says

    That was spot on with what I’m going through. I’m only 9 days in!!! I have strong painkillers which take the edge off a bit. It was nice to know what I’m feeling is completely normal, as I had started going downhill into depression. I’m tolerant quite a bit to my meds, so they don’t work as well as they should, needed them too much over the years😢. Thank you so much for the post it really helped x x

    • silverpen says

      You are so very welcome, Sharon. Sending all of my very best wishes to you. Please be gentle with yourself!
      xx Hollye

  5. Brenda Wilbee says

    Can you recommend pain meds for bi-lateral mastectomy? It’s been six months and I’m miserable, not healing, reconstructive surgery delayed now for a whole year due to lack of healing.

  6. vivian says

    your review was created because of your truth & everything you stated was the absolute truth. One year today I underwent my bilateral mastectomy. My life as I once knew it will NEVER EVER BE THE SAME. Thank you & please continue to share OUR journey. Respectfully, Vivian

  7. Eliza says

    Any Idea which pain medicine is the best? I have a very low tolerance to pain and high tolerance to pain meds. Doc prescribed Tylenol with codeine,but I know from dental procedures that this does nothing for me. My double surgery is scheduled soon and don’t know what to ask for. Thanks for the help

    • silverpen says

      Hi Eliza,
      Sorry for my belated response.
      Ohhhhh, can I relate to you! Please call in a pain specialist, ideally someone in palliative care to ensure that you will have proper pain management. This is so important and will help immensely when it comes to healing!
      Very best wishes. Please stay in touch.

  8. shelly griffith says

    I feel like you in that the cancer does not frighten me as much as the anticipation of the pain I am going to experience after my double mastectomy coming up in February. Dr’s are so hesitant to prescient what you may need and enough of it. This mortified me! Thanks for your post!!!

    • Michelle says

      Good luck on your surgery. I will tell you that taking the Xanax with my pain meds the first week really helped. It relaxes the muscles and helps your mind relax as well. It saved me. Praying for your recovery!!!

  9. Merrill Velensky says

    Thank you so much for sharing your story. So sorry to know that you went through so much pain. Hope things are better now and that you can thoroughly enjoy your time with your daughter and husband.

    My name is Merrill, 43 years old from Cape Town, South Africa. I had my op prophylactic bilateral mastectomy with immediate reconstruction on 5 December 2014. The op went well, drained on schedule, pain was minimal while in hosp for 6 nights. Drains were removed before I went home:) with 10 anti-inflammatory capsules and 20 pain killers – with no repeats on the script. An excellent start… three days home and I start experiencing serious discomfort and pain but having been told that this is par for the course I stoically deal with it by conservatively taking meds. I go to have my dressings changed(4 days post hosp discharge) and the nurse is very happy with the healing. She however does not have advice regarding pain management.

    The muscle in my new left breast often pulls stiff and pains like crazy. This happens in my new right breast as well but not to the same extent as in the left one. Is it safe for me to take Ibupain Forte Capsules to manage my pain or do you recommend something else? Please help!!!!!

    Kindest regards

    PS. My silver linings are that I’ve, scientifically speaking, reduced my risk of getting breast cancer by more than 90% with the hope of sparing my husband and daughter the trauma and devastation that cancer brings with it. And having smaller firm breasts, albeit silicone, will be a very new experience for me. I was a size 32GG pre surgery now a big C.

    • silverpen says

      Dear Merrill, Thank you so much for sharing your story and your silver linings! Sending you all of my very best wishes! Please take good care and stay in touch.

      • Merrill says

        Dear Silverpen

        The infection did not clear and debridement surgery took place on 31 December. It is now over 5 months, with twice weekly wound care, and the wounds are not healed completely. Pain, discomfort and sleep deprivation is now part of my daily life, thankfully it is not as bad as it was originally.

        Thanks again for creating this forum for us to share, learn and take comfort in each others stories.


  10. kathryn norris says

    Hi Hollye, I became aware of your site through our mutual friend Maili. I applaud you and your beautiful blog and am particularly interested in your pain management comments. My husband and I both have had surgeries resulting in incredible pain. We, like countless others, wonder how this can happen in today's world of medicine which has access to terrific pain meds. I find it greatly ironic that doctors seem to be uneducated or unaware of the power of pain. We found one surgeon who seemed more interested in his "work" that our circumstance. His comment to me in a middle-of-the-night phone call regarding my husband post surgery was "He'll be fine." I said "Yes, of course he WILL be fine, but he is NOT fine NOW!" I boiled over that for days, even now!
    I do hope your professional position and personal experience can afford you the opportunity to make a change for all who have and will suffer from post procedure pain. It is a "painfully" serious gap in medical care today.
    I recall the movie "The Doctor" starring William Hurt. He, the doctor, gets sick and must endure the experience of being the patient . A rather eye-opening experience for him. Wish all docs could experience what they are trained to treat.

    • says

      Dear Kathryn,
      Thank you so much for your thoughtful note. I am indeed using my platform as a way to educate about the importance of pain (& symptom) management. Doctors and nurses are not educated and trained enough in pain management. There is a severe deficit. The Silver Lining is that hospitals are now required to have palliative care teams. These specialists are the experts in pain management.
      Many thanks for your note.
      All my best wishes for health!

  11. says

    Hi there. In my first comment to you, I didn't realize that you'd already had a bilateral mastectomy as I hadn't read the back pages of your blog yet. I'm just reading this today, and I applaud your very passionate blog about pain management. I totally agree. My bilateral mastectomy was in November after 5 1/2 months of chemo and it was WORSE than the chemo. The pain is so unusual (all that pulling and tightness) and almost constant and I don't think any of the doctors have a clue what it must feel like. So thanks for allowing me to recognize that I'm not a wuss. I still have pain now, when I over do it, and it's been almost 5 months. Love your writing style. XO Claudia

    • says

      Claudia’s experience (in 2011) is exactly what I’m going through now. The pulling, tightness, and pain to the touch are constant four month’s after a bilateral mastectomy. Did yours ever improve? Did you discover any remedy that alleviated the symptoms? Thank YOU for your comment that allowed me to recognize that others have experienced this. Diane

      • silverpen says

        Mine did improve. It took a long, long time. Patience is the very best remedy, truly.
        I also did acupuncture and stretching which helped immensely.
        Please take good care and stay in touch, Diane.

  12. Thomas says

    I second Caroline Diani's YOU ARE SIMPLY THE STRONGEST, MOST VIBRANT AND BRILLIANTLY INTELLIGENT WOMAN. So, the only pain question left unanswered is what should be prescribed for those jones'n in pain from miss'n you… you are my prescription for making a grey sky bright….and ironically still are as I read your inspiring reflections…girl, even when you are down you are still giving it up!

    I ordered my When Someone You Love has Cancer book. Is it required that I read while on the potty?

    Love you to pieces…

  13. Caroline Diani says

    Jeepers Hollye! You are simply the strongest, most vibrant and brilliantly intelligent woman I think I know.
    I'm sending you love and laughter filled days with NO MORE PAIN!!

    Lots of love and hugs,

    Caroline xoxo

  14. Mary Beth says

    Dear Hollye,
    You have such an articulate voice in describing the pain, the pain, that monstrous all consuming pain that has the potential to completely control one…..and yet, it does not control you. I cannot emphasize how you are teaching brilliantly as you blog. Thank you!

  15. diane says

    I forgot to say that I TOTALLY relate to your questioning the amount of drugs to what price? To me, the constipation was one of the worst things I experienced after coming home from the hospital. I could not wait to get off the Norco.
    Also, imagine all the food in the world, all the things you love to eat, even things you might have taken out of your diet…whatever it is, if you have a little craving, get that food and chow down! I had such anxiety post-surgery, I lost weight before starting chemo and then of course lost more, so try to pack on a couple pounds before you start. I know its hard…I avoided mirrors for months which was difficult since in my dressing area I have a HUGE one leaning against the wall!!!
    Another suggestion, I had a hard time concentrating when trying to read so I watched TCM constantly. Stock up on movies just in case! Old black and whites are great, you can get carried away with the interiors and fabulous gowns!
    Miss you and think about you all the time
    xo Diane

  16. diane says

    Oh Hollye,
    Having half a lung removed was a piece of cake compared to what you're going through….I cried reading about "The Husband", he and 4 3/4 are the biggest SLs I can imagine. You are so articulate and I agree with everyone that this blog is a best-seller…you are inspirational and express this journey brilliantly.
    However, I do take exception about the "princess dress"….Oscar???? Really????
    Much love,

  17. ginny simon says

    Dear Hollye,
    How incredible you are to teach and supply wisdom as you suffer so. You show such strength, poise and grace through every sentence. Thank you for allowing us into your
    struggle, I know I just want to love you and protect you. Only wish it were possible.
    Always with love,

  18. Amy says

    Hollye – Just read the post. I'm so sorry. I don't know what else to say — of course wtf comes to mind. I just don't understand. . . .

  19. Laura McGrew says

    Good morning Hollye,
    I just finished reading 'Pain, pain, and more pain' and I am wondering if educating your readers is an SL for you. I certainly hope so because that is exactly what you are doing. I will be sharing this essay with a friend [of course I will delete personal details.] I also wonder if perhaps it is in this arena that you may become an educator for professionals. They may listen to you more carefully because of your background than the salesman, housewife, or teacher whose complaints about pain levels get brushed off.
    Lastly, I am so very sorry that the pain continues for you. Know you are in my thoughts and prayers.