What The Doctor’s Don’t Tell You

YOU. HAVE. CANCER.

When I heard those 3 words, my world was turned upside down, I didn’t know what to think, what to do, where to start and it did not just affect me, it affected everyone around me!

There is so much information you need to know and so many things that people, caregivers, doctors are telling you all at once that it is truly overwhelming… It is almost like a silent movie where people are speaking but you just can’t hear any sound.

There are so many things that I wish I had known then or even just thought to ask. I am writing this not to freak anyone of you reading this out, but rather just to hopefully educate and make you aware of some of the issues that so many of us faced when we heard those three words. This guide came to fruition with the help of many fellow pink sisters and my own personal journey through breast cancer.

First and foremost just take a deep breath and know that no decision has to be made immediately. Allow the words to sink in, have yourself a much-needed pity party, and then put your big girl panties on and Beat Cancer’s ass. Cancer is not a death sentence especially if it is detected early.

Get a second opinion, or even a third if you don’t feel comfortable with the doctor. You are going to be poked, prodded, health careand looked at byhealthcareprofessionals during the course of your treatment. Modesty tends to go out the window once the word Cancer has been uttered.

*Do your research and educate yourself, but don’t become obsessed. Do not live on google. You have too many other things going on for that right now.*

Take notes, lots of them, actually better yet start a journal. Get a small calendar or notebook to track of appointments, medications, dosages and times that they are to be taken. Use it to write down how you are feeling and any questions that may come to mind, because I can assure you when you are in the Doctor’s office, you will not remember all if any of them.

Allow yourself one Pity Party. Celebrate you and everything wonderful there is about you. You are entering into what I like to call a very selfish time. You should allow others to take over as many roles as possible so that you can focus on you and healing your body, your job now is to take care of YOU. Your life is about to be turned upside down.

Depression is common. Don’t ignore the symptoms. Speak to your doctor and address it at the first signs. We are often afraid to discuss this, but it is a REAL symptom and one that should not go untreated.

Everyone’s cancer and treatments are unique to them so although not everyone can predict what course of action will be taken, many of the side effects and symptoms are the same. Just because a friend of yours was down for weeks after surgery, doesn’t mean that you will experience the same.

The Doctor who diagnoses you does NOT have to be the one who treats you. There are specialists out there and YES there are doctors who specialize in breast cancer and breast surgery. This person will most likely be an intimate part of your life for years to come so make sure you like their “bed side” manner. I have been with my oncologist now for over 12 years and during that time we have been through graduations, weddings and births of our grandchildren.

Get your house in order and we don’t mean as in doing laundry or cleaning the carpets. There will be lots of people who will offer their help. Do not be afraid to say yes and give direction or ask for help. Make a list of things that need doing on a daily/weekly basis and allow others to do them.

Not everyone will understand what you are going through and some may not know how to react. Friends may drift away or stop calling while others you never thought were close, step up to the plate big time, but please don’t dwell on those that drift apart or away. This is a selfish time. You need to do what is right for you and your health, and worrying about others or stressing doesn’t help. Speaking of stress, DE-STRESS your life as much as you possibly can!

Diagnosis is in……. What are my options?

Your options are many and you need to be comfortable with the decision YOU make. Ultimately it is your body we are talking about here no one else’s.

Here are just some of the options you might face.

Lumpectomy
Mastectomy-uni or bilateral
Radiation
Chemotherapy
Hysterectomy

When discussing protocol, are you premenopausal, perimenopausal, or post menopausal?

I won’t go into depth on the options per say, but no matter what you choose, talk with others about your decision. Join a support group, call me, send me a message, REACH OUT (i’m serious), but make sure whatever decision you choose, it is the RIGHT one for you!!!

Expect the Unexpected.

Buy pajamas that button up the front as well as a couple of shirts. It is VERY uncomfortable to lift your arms overhead. Brushing your hair can be very challenging.
You WILL be sore. You will NOT be able to jump back into your normal routine for a minimum of two weeks and here is where us survivors get a little tough on you. Nothing and I do mean nothing is as important as your health. Listen to your body. It is the best voice of reason at all times, and if you aren’t ready to return to something when someone else thinks you are, speak up, only you and your body know when it’s that time!

A Few Tips!

Tiny flexible icepacks are a godsend.
Grab little pillows for under your arms to sleep or to just rest comfortably. Sleeping on your stomach is not an option for quite a while.
The size of the needle matters. Without being too graphic, chemo disrupts and weakens all of the systems in your body including your veins. Go with the smallest needles possible when blood is drawn, and if you get squeamish, don’t look 🙂
It does matter which arm they take blood or your blood pressure from if lymph nodes were removed so ask which arm is acceptable.
Lymphedema is real and can happen months after your surgery. If lymph nodes are removed, be proactive and get information on lymphatic massage and pressure garments.
This probably falls under the guise of “TMI” but constipation is VERY common with all the medications and can be very painful. Using a stool softener such as Colace can be a lifesaver.
No matter which type of surgery you have, make sure to bring an extra pillow with you for the car ride home. The seat belt is not a friend to breast surgeries. Place it between you and the belt for a little added comfort.
Nausea is a very common side effect from surgery because they are pressing on your diaphraphm and stomach during surgery. Make sure to request anti nausea medication post surgery. Vomiting is NOT fun after surgery.
If you are having a mastectomy, drain belts are awesome! Lanyards work great for holding your drains while you shower. You will need someone to help with the drains and measuring fluids so make sure the person you choose is not squeamish.
Radiation is usually for an extended period of time and is most often administered daily. When you go for your appointment for getting yourself “marked” be prepared for them to draw on your chest with a Sharpie and no you can’t just go home and wipe it off. I made the mistake of wearing a lower cut shirt and looked silly leaving with all those markings on my chest.
Some people experience fatigue the further into radiation treatments you go and others are able to tolerate it fairly well.
Everyone that gets radiation though needs to use the cream given to them by the doctor. The skin can get very irritated and raw. Consider wearing camisoles and loose clothing during this time. Stick with aluminum free deodorants.

Some Chemo Insights:

Take all the meds that are given to you especially the “happy” pill. They are meant to keep you as comfortable as possible and don’t plan on doing anything other than resting post treatment.
Bring someone with you that will keep your mind off what is happening and will distract you. Bring a DVD player and watch a movie 🙂
Most facilities give you a choice of whether or not to receive Chemo in a group environment or in a more private setting. This is truly a personal preference and one you should think about ahead of time and discuss with your oncologist.
Chemo alters the taste of just about everything you eat and most patients would describe it as a “ metal” taste. Things you have always enjoyed may not taste very appetizing during this time. Eating with plastic utensils does help with the taste and temperature of the food can also make a difference. The most important thing here is that you do need to eat to keep your body nourished so try eating good nutrient dense foods as much as possible.
You may experience mouth sores from chemo so it pays to have some type of mouthwash on hand for this. Biotene is one that comes to mind. Baking soda and salt is another option.
Depending upon the “cocktail” you are given, you may or may not lose your hair. If you are one of those that will lose your hair, there are a few positives. Your hair will most likely change in texture and can change in color, (mine came back with a LOT less gray than before) and you lose hair from all over the body so think of not having to shave as often or at all. Hey, you have to look on the bright side of things too. Not everyone chooses to wear a wig and they can be very uncomfortable especially when exercising. There are lots of places to get head scarves or often times bandanas work just as well. The oncology staff can direct you to where to get a wig, but don’t be afraid to talk with your hair stylist about it. They also can give great advice on this.
Your whole immune system is compromised during this time so take extra precautions during treatment. Even animals carry germs so just be aware especially right after surgery. Dogs and cats carry the bacteria Pasteurella.
Chemo brain or chemo fog is very real. Forgetfulness at any time can happen, driving, picking up kids etc. There is a reason why they tell you not to make any important decisions or sign any documents during or right after chemo.
Chemo does not discriminate by age. You will most likely not menstruate during chemo, but you will also go through temporary menopause. Depending on individual treatments, you could then be in full blown menopause much younger than expected. Hot flashes are just one of those lovely side effects.

ATTITUDE is everything!

Your breasts do not define who you are as a person, nor does losing them mean you are less of one. You are an amazing individual with so much to offer. Smile everyday even when you don’t feel like it because there is always someone out there that is much worse off than we are.

YOU WILL GET THROUGH IT!!!!

YOU are a survivor with thousands of other pink sisters supporting you every step of the way. Think of it as a roller coaster ride with highs and lows, joy and fear all wrapped into one long emotional ride.

If you have read this far, I hope you are not freaked out. That was never my intention. I just remember going through so many things and thinking to myself, the doctor never told me that, or that wasn’t what they said would happen, that if this helps just one other person going through the journey, writing this will have been time well spent.