Amy was diagnosed with breast cancer around the same time I was and underwent a double mastectomy and chemo.
I thought it was worthy of reposting here for anyone who stumbles this way. My stats show that a lot of people find this blog through breast cancer diagnosis searches and we want you to know, you are not alone. And these are things we wish we'd known in the beginning of our respective journey's.
I felt compelled to write this down because so many have asked me various questions or asked me to speak with newly diagnosed people. Maybe it can help one of you help someone or for your own understanding. So here goes....It has been over a year since my diagnosis and in that time I have learned so much and come such a long way. I recently thought of signing up to be a peer to peer counselor for newly diagnosed breast cancer patients. I have spent some time thinking about all of the things I have experienced and learned in the last year. It is overwhelming to really think about. I guess it really got me thinking that some people reading this may be newly diagnosed and I wanted to share my most key points in case it helps others going through this breast cancer nightmare. (or any other cancer really)(from another side of it, I also watched my dear, sweet, strong mother fight ovarian cancer for 5 yrs only to lose her battle, but going through my own experience has also helped me understand some of the things she would try to explain even then. Its a full circle perspective!!!)
1. Get second opinion and weigh ALL of your options. I think that even if you think you may get a lumpectomy you should meet with a breast surgeon and a plastic surgeon and just hear what everyone has to say. Get second opinions for both too. I did and found hearing what each of the surgeons had to say helped me make a decision I could live with. (my own personal experience being a double mastectomy & reconstruction)
2. Consider more medications! I was always the type of person that hated taking medications. Now I embrace medications that will help me. I also welcome xanax at night to help me sleep and lexapro to keep me calm and reduce my anxiety over dealing with breast cancer. Honestly, I would never in a million years think I would take xanax or lexapro, but I am glad I did have them and it has made things a lot better for me, also made me a better patient, calmer. Don't be afraid to talk to your doctor about this, it is normal. Breast cancer is a lot to deal with so there is nothing wrong with a little help.3. Don't let your anticipation get the best of you, everyone has it Its fear of the unknown. (the medications could help with some of this) Every step of the way I worried and had huge anxiety over what was to come. (even though my Faith was strong & I had plenty of support) I was an emotional wreck and freaked myself out so bad before some procedures or chemo and expected the worst. (I am also a needle-phobic) What I found is that most things were actually easier than I anticipated (don't get me wrong...it was not cakewalk!). I just had extreme fear of the unknown and made it worse in my head that it actually was, once I learned to make it seem more like a mundane task, like doing housework, my anxiety subsided a little bit. Sometimes you have to learn to turn off your mind & stop thinking and just DO!!!
4. Don't think about the "big picture". Take it one step at a time. I think if you look at the entire breast cancer road ahead of you, it is just way too much. I did better just focusing on the next step I had to deal with and not the whole thing all at once. This kept me a little more sane!5. Attitude matters - A LOT! I told myself I would not be that sick girl going through chemo...and I wasn't. I got up every day and exercised and tried to do everything I normally did before chemo on a daily basis, some days were tougher than others. (but I put on my wig & makeup anyway) The more I kept moving and acting normal, I did not focus on being sick from chemo. Granted some people take chemo harder than I did, but I do believe the more you buy into feeling like crap, you will feel like crap. Just my opinion. You have to stay positive & busy. I even caught up on some scrapbook projects while I was recovering and was well enough to sit up. Anything to stay busy & "normal".
6. Remove bad foods and toxic items from your life. Along with everything i already knew about nutrition, I also read The Anti Cancer book and it helped me understand which foods are bad for cancer patients and that actually fuel cancer. I have been able to adjust my eating to make me healthier and hopefully decrease my odds of recurrence. (even carrying the gene) I have also read a lot on the internet about toxic ingredients and hormones in body care products. I have also changed make up, lotions, deodorant, toothpaste, shampoo, conditioner, hair color, cookware, plastic containers, water bottles and cleaning supplies. The world is full of toxic chemicals so I am avoiding the ones I can avoid. It takes a lot of time to research this stuff, but it is worth it.7. You don't have to lose your hair during chemo. Penguin Cold Caps can work for some people depending on which chemo you have. I had tax, red devil, & cytoxan and they didn't for me, but I had the really heavy "hitters", so I was happy with my wig. (and I made it fun to go get one & my advice is to you if it is falling out - shave your head when you are ready, don't watch your hair fall out every day, it is just too traumatic for women - make peace with it and shave it - I had my husband shave mine at the first signs) Most doctors will not tell you about cold caps and if you bring it up, they will tell you they don't work. But try it anyway, doctors know a lot, but if he''s a man, he still doesn't understand the way a woman things completely. LOL. 8. Connect with people that "get it"! I am fortunate that I was referred to a breast cancer counselor and through her connected to groups and get a lot of support online from other women that are going through breast cancer too. I still participate in online message boards and a private facebook chat group of dear friends I met through having breast cancer. I could not have gotten through this without my good friends that surround me and are also living this nightmare along with the message boards where I have gotten great advice and support.
9. People act stupid when the word "cancer" comes up. People just don't know how to act. Many people will let you down while you go through breast cancer treatment and surgeries. Some people that you think really care about you won't even acknowledge your cancer or offer to help. Some don't even call. In time I have grown to realize it does not mean they don't care, they just don't know what to say or how to act, so they do nothing. I won't lie, it hurt me a lot that some people acted like they were ignoring me, but I really think they just didn't know how to process it. And to be honest, my energy had to be spent on surviving, not dwelling!!!
10. I have always said "Exercise is important" and I still say it. I exercised daily through chemo and treatment on the days I could, except when I was instructed not to exercise. AND even then I asked my Dr every appt if I could yet, he even labeled me his "racehorse patient" because not one of his patients asked that question as much as I did. It helped me physically and emotionally. Exercise not only made my body stronger, but helped reduce my stress levels. I think it also helped me focus on feeling GOOD, not crappy through treatment. You must find a while to distract your mind and stay positive!!!
I am sure there are countless other things I have learned, but these are the things that stand out the most in my mind right now. Breast cancer is a long, complicated, and exhausting process. I am sure I will continue to learn more things as I move forward surviving breast cancer. In fact, I learn something every time I speak to someone else about their experience. Things I never even considered during mine, because that's the thing, we are all going through it, but we are all in a different place. But that's how we help each other. I don't want breast cancer to be what defines me for the rest of my life, but it has been a part of me for so long, I don't know who I was anymore before being a cancer survivor!!! So, if I can help someone then that's what I want to do. So they know they are never alone. (the loneliness can be the worst part and can be suffocating)Even now, I still have lingering side effects that frustrate me every day. But I know, from talking to others, these are normal and can be worked through. Maybe one day I will write about those, BUT writing/ thought process/ memory is one of the things affected by my side effects. It takes me much longer to get out a thought and it be read properly, but I keep working through it. That's what you do - You Keep Moving Forward because you never know what lies ahead!!!
One more thing I might add....it's okay to be selfish. You are, quite literally, fighting for your life. My Dr. is famous for saying "No one wins a prize for being a hero." What he meant was that you don't need to do it all. There are so many resources available for people dealing with cancer; counselling and support. A good place to start looking is the Canadian Cancer Society or the American Cancer Society.
If you feel sad, cry. If you feel angry, shout. If you feel tired, sleep. If you feel pain, take some medication. But mostly when you feel good, celebrate! Do what makes you happy - LIVE your life.