Suffering Pain in Silence – We Need to Be Active Participants in Our Own Healing

I was reminded of the very important issue of taking responsibility for our own healing last Tuesday night, when I attended the 10thAnniversary Living in Pink gala of the Young Survival Coalition Northern New Jersey at The Brownstone in Paterson, NJ.  I was thrilled to run into a very special woman I hadn’t seen in a long time, Alyssa Millman.  Alyssa is a supportive oncology and breast surgery massage specialist.  I saw her at Overlook Hospital last fall because of pain caused by my TRAM flap reconstructive surgery.

I won’t get into the details of TRAM flap surgery here; suffice it to say that it is major surgery and particularly disruptive to your abdominal organs.  Further, it causes numbness and increased sensitivity, which is just weird, but true.  I had this surgery on April 15, 2009. I knew my abdomen would possibly be numb for the rest of my life as a result.  I didn’t know I would have pain every day from sitting, wearing a waistband or a bra, or just because.   I withstood the pain from April 2009 to October 2010, until I finally couldn’t take it anymore and called my doctor’s office.

The first thing the nurse said was that it was a normal result of the surgery.  Huh?  Another surgery to remove the scar tissue which was probably causing the pain would most likely result in additional scar tissue.  My swift and intense upset surprised me, but I asked the obvious question, “Will I have this pain the rest of my life?”  Her reply was, “Probably.”  At that point, I just wanted to hang up and curl up into a ball.  Before I hung up, she told me, “The doctor said you could try massage.”

That’s how I found my way to Alyssa, who dedicated herself to figuring out my insides and making them feel better.  She researched my condition, gave me all the time she could and educated me.  But most of all, she touched me.  She worked on my body with the care, sensitivity and artistry of a healer.  It took a few weeks, but I began to feel better.

It’s a shame that I suffered for a year and a half not knowing there was help for my pain.  My doctor was amazingly talented at putting me back together (more on that in a future post), but I wish he had warned me.  I have to take responsibility too, however, because I should have actively looked for relief, rather than accepting pain as one more punishment of cancer.

To this day, I still have pain, but it isn’t as bad as it was before Alyssa worked on the scar tissue.   Now that the scar tissue is under control, yoga, especially stretching poses like cat-cow, do wonders.   I do these exercises every day and, if I miss a few days, definitely feel it.  Since my surgery, I’ve learned that there is so much support out there.  Our job as survivors is to find it, take advantage of it and always be grateful for people like Alyssa.

Have you suffered in silence, rather than reach out for help and support?  What did you do that finally brought you to the help you needed?

Survival > Existence,
Debbie

Comments

Dee Dee's picture

We as advocates must actively looked for relief!!!

Wow this is so true. I really appreciate your post since I know all too well about suffering in silence. Now that I’m online and in social media I have a new forum to learn and educate others. I just wrote about my experience with adverse drug reaction which cause neuropathy and how i’ve since learned to successfully better manage this condition, eliminate pain and reduce meds. I hope by sharing my experience others with be empowered to find their relief and seek out help.

http://chatwithdeedee.wordpress.com/2011/05/25/when-life-gets-messy-adve…

Debbie's picture

Welcome to WWGN Dee Dee!

Hi Dee Dee!  I’m so glad to welcome you as the newest WWGN member!  I read your blog post and I am so glad that you were persistent in finding relief for your pain.  I’ve met so many brave cancer survivors – but there is no reason to suffer in silence with needless pain.  I believe that bravery is living life to the fullest – as you state in your blog post – and that means finding every means possible to live life joyously and with as little physical and emotional pain as possible.

Margie's picture

massage post tram flap surgery

I was fortunate to have been put in touch with a massage therapist prior to my surgery. I still visit her every two weeks (I am 2 years post surgery). I feel this helps keep me well and helps with pain. Still find it hard to get used to numbness in tummy and breast . I feel very grateful for the surgeons I had in NZ and for having great health insurance. I feel very upset for the womens stories I have read here. If you can try massage and yoga – I think it helps.

Debbie's picture

Yoga & Massage Are Invaluable Tools for Healing

Margie:

I just did yoga last night and, with various stretches, could actually feel the scar tissue from my TRAM stretching. Yoga and massage are the only things that have made the pain from my TRAM manageable. You remind me that I should probably schedule a massage soon, because it does feel like the scar tissue is getting worse lately. You are so right that we are blessed to have good surgeons and health insurance.

Survival > Existence,

Debbie

sally Jones's picture

I had tram flap reconstruction in 2002 which failed. I had several surgeries to fix what went wrong. It has now been 11 years and I have started to get a lot of sharp pains in my stomach around my navel. It is tolerable during the day, but keeps me awake at night. I don’t want to get dependent on taking pain pills, which is the only thing that relieves it at night and lets me sleep. I have experienced the same pain in the reconstructed breast from time to time. That is why I believe it is scar pain and not any intestinal issue. I am very interested in the Yoga to help. Could you send me more information on this? Thank you,

Debbie's picture

Hi Sally:

I know that pain. As I said in my post, yoga and rehabilitative massage have helped a lot. The best yoga pose I’ve found for stretching out the scar tissue in my abdomen is Cow Pose. The beauty of yoga is that you can do it at home, with no equipment. It’s easy and keeps me flexible. I do Cow Pose almost every day and can definitely tell when I don’t.

Stay well.

Survival > Existence,

Debbie

 

Barb's picture

Hi, thanks for sharing your story. It’s refrshing to read that a doctor actually acknowledged that a side effect of tram flaps can be chronic life long pain. Like you and many others I wasn’t aware of that until it was too late. Are you willing to share your doctor’s name?

Debbie's picture

Barb:

Actually my doctor didn’t tell me about the long term pain. It was my massage therapist who worked with me to help lessen the pain. Doctors tend to avoid letting us know these things, don’t they? Just goes to prove that we have to keep pushing to get the information we need from whatever source we can get it from.

Debbie

Heidi's picture

Hi ladies. Nice to find you. I’ve been lucky, 4 years out most of my pain has resolved. I recently found yoga. It’s be a huge blessing. My question is regarding balance. Does anyone else fall– often? It seems like the smallest offset results in an unrecoverable fall, as if my body thinks the abs are still there for stability but cannot access them and thus a topple results. I am hoping yoga and strengthens will help my body nod brain learn to access new ways to stay balanced but worry one of these falls will be serious.

Debbie's picture
new

Hi Heidi:

Nice to be found! I discovered yoga after my reconstruction too and love it. I didn’t experience any balance issues, however. Because you’re concerned about a serious fall, I’d recommend speaking to a doctor. In the meantime, take your time and don’t push yourself. Even at 4 years your body has been through a lot.

Take care,

Debbie

 

 

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