I recently stumbled upon an article listing 17 things no one ever tells you about breast cancer. The list was great (I wish I could find the link to share on this blog but I can’t seem to locate it) and of course there could be 100 more items added to the list so I couldn’t resist sitting down and coming up with my own. A list very personal to my experience, but one that could be helpful for any “non-cancer” person to keep in mind when a loved one is fighting the fight. Why 13? It’s my lucky number and the day of my birth! Here’s my list:
- Most of the time, all the pink ribbons, catchy slogans and 5k runs can be distracting and irritating. Catchy slogans may raise awareness, but at this point, aren’t we all aware of breast cancer? Let’s put our dollars towards research and treatment, not awareness. Let’s fund research to end metastatic breast cancer and save more lives.
- We don’t ever want to hear “Everything happens for a reason”. Don’t say it. Ever.
- It can be awkward and weird talking about your breast cancer. I mean, talking about your boobs with your boss is just, well, weird.
- Please don’t downplay the severity of the disease. Just because your neighbors mother had it and your friends aunt had it, doesn’t mean the disease isn’t serious as hell.
- And since I’ve mentioned it above, we don’t care if your neighbors mother had it and your friends aunt had it. It doesn’t matter WHO you know who has gone through it, it’s happening to ME and I’m terrified beyond words. Just because you know people who have gone through it doesn’t make me feel any better.
- Breast cancer isn’t something you can overcome with sheer will.
- Just because someone seems incredibly brave doesn’t mean they are.
- If you have no idea what to do or say, just ask how you can help. And keep asking and checking in. Nobody likes to ask for help so be mindful that they may say they don’t need you but in fact they do.
- But, please don’t pull away from your friends who are sick. Ever.
- Even when someone seems to be healthy, or you think they should be “over it”, doesn’t mean they aren’t still dealing with the mental, physical, or emotional aspects of what has happened to them.
- Sometimes what comes AFTER breast cancer can be the hardest part. Hands down.
- The medicine is brutal and the side affects are sometimes unbearable. And we have to take these medications for 5 to 10 years.
- Please remember, having a mastectomy with breast reconstruction surgery isn’t even close to having a “boob job”. So please keep that in mind and don’t say things like “at least you’re getting a nice new set of boobs”.
When you think the journey is over, here is what you don’t know…
Most of these things are hidden from the outside view so everyone expects you to be normal and back to your old self but when you are fatigued and in pain, every task you try to accomplish becomes an ordeal. Remember, this list is the aftermath of breast cancer and does not include any of the things you experience during your journey. These are the things that are heavy for me. These are the things that I’m learning to accept, deal with and move on from.
- PTSD (non-combat, of course, but being faced with your own mortality can cause anxiety and severe depression)
- Fear of remission
- Lymphedema (and the stylish sleeve you get to wear)
- Joint pain
- Weight gain
- Sexuality (loss of desire and not wanting to be touched)
- Osteoarthritis in lower back caused from weight gain
- Premature menopause and hormonal imbalances
- Body image issues due to scars and surgeries, complete loss of feeling and no nipple
- Numbness and loss of feeling around surgery site, nerve “shocks” or “pulses”
- Physical side effects of cancer maintenance meds for next 5 to 10 years
- Guilt over the burden of family and friends and everyone expecting you to return to normal and be back at 100%
I am pushing through all of these obstacles and pointing myself in the right direction but it’s a slow process. That’s ok with me, as long as I keep moving forward.
When you are diagnosed with cancer it can be hard for those who love you to know what to say or do. Sometimes just being there for that person is enough. You don’t have to say the right words or do anything special for that person. I was not prepared for what the future would bring after the drama of my cancer died down and everyone had returned to their lives. Instead of realizing that my silence and recluse behavior was a sign that I needed help, it was easier for those I considered my lifelines to turn a blind eye to my silent cries for help. Yesterday was my 3 year anniversary of the day I heard those dreaded three words, “You have cancer”. Yesterday was also the day I received a diagnosis of PTSD. While it is a bit overwhelming, I feel a sense of relief that I can heal and move forward. The pain I endure today comes from those who are no longer around to support me. I can only thank God that those who never left my side are cheering me on from the sidelines knowing that it doesn’t matter what they say or do, just being there for me means the world. I am one step closer in this long arduous journey to healing!
Here are some websites I cannot live without. The first link is for Living Beyond Breast Cancer and it’s full of good resources and information for the newly diagnosed or the cancer expert. I have participated in a couple webinars and the information is very helpful.
You can check out Living Beyond Breast Cancer here:
I didn’t stumble upon CureDiva until after my surgeries, but I love the products and I can’t wait to order my new tattoo compression sleeve! They even have nipple prosthesis in every size and color imaginable. Please pass along to anyone you know that has been newly diagnosed, is going through treatment, or recovering. These products are amazing!
You can check out CureDiva here: