SOME HELP

First, before I can enter into this blog post, I want to acknowledge the passing of one of my cousins. She died of breast cancer recently, and she lived with her family in the Philippines. I never knew her; In my big family, I have more than 52 first cousins. And, living oceans apart, I never met her. But, she is my family, we shared a blood connection on my father’s side, and of course, we likely shared a genetic connection: BRCA.


The news came as a brief text message from my dad who only recently heard the news from his sister in Florida. If you know my dad, he’s a man of very, very few words. So, the text message announcing the passing of his own niece doesn’t surprise me. I was, however, surprised by his last words:

“You made the right decision. Love, Dad.”


To read those words, from the man from whom the BRCA genetics was passed, meant more than the world to me. Especially, on my first relatively pain-free day, I am, again, reminded of the great privilege I have had to know about BRCA and to make a choice to save my life.
Rest in peace, dear cousin.

**********

As I was looking up some p0st-mastectomy information online, I came across a message board started by a woman who was having a mastectomy in a few weeks. Many other women responded with advice revolving around, “Get help from friends, get help from family, get help from neighbors.” But, it was the woman’s post back to the advice givers that made my heart drop:
“I don’t have any family, friends or neighbors to help me.”


So, below is my post about WAYS TO HELP (a spin off of the one I posted in September) and WAYS TO HELP YOURSELF. Please feel free to add any information in the comments!

At first, I was going to re-post the list. But, I realized it was also helpful to have a list — 2 weeks post-mastectomy — of what I knew to be helpful in hindsight. Please see the original post here.

WAYS TO HELP A FRIEND PREPARE FOR A MASTECTOMY


1. Financial help. Insurance — even the good ones — rarely covers an entire mastectomy, hospital stay, and medications that go along with the recovery. While your friend may feel awkward about this, she/he will thank you later. If you know your friend is going to feel weird about it, give cash or giftcards rather than a check. A check may make her think twice about accepting it. (With lots of support, and words like “Just accept this” or “If you don’t cash this, I’ll be offended”, it was easier to actually make the deposit. But, just know that it feels very, very, very strange to accept money from friends). Some friends may not have adequate sick leave or even paid sick leave. The last thing your friend should be thinking about after a mastectomy is “I need to go back to work so I can pay this month’s rent.” Agreed? It doesn’t have to be a lot of money. Not at all — every single little tiny bit does help.

2. Rally the troops to cook and deliver food. I could barely (physically) brush my teeth, never mind even be able to think about opening a refrigerator to grab a loaf of bread. Even now, at 13 days post mastectomy, I am timid about lifting a gallon of milk or pressing the button on the microwave. My surgery depleted me of a lot of chest muscle which, surprisingly, you need to do the most basic things. The good people at The Park School came up with a schedule of ready-to-eat food for three weeks, and it is delivered with a smile each day by a lovely woman named Latoya. They have cooked up a three course meal each night that we eat for the next 3 meals! Other friends mailed desserts and frozen food, and others sent Edible Arrangements which were incredibly convenient because it required absolutely no chopping or peeling (again, tasks which are impossible those first few weeks).

3. Take on a small home project. A few days after surgery, a great bunch of students from my work came over to rake our lawn. They finished it in about an hour, and it would have taken my husband a few days to get it done. They gave an hour of their day; they gave us peace of mind and relief for the next year. Quite a gift, right? For your friend, perhaps let him/her know that you’ve got a crew ready in case it snows or the lawn needs mowing. Or, even just let your friend know that you should be the one to call if a pipe breaks or if there is a flood in the house. Peace of mind is, truly, a priceless gift to give.

4. Gift cards to the grocery, gas, restaurants. Yes, the smallest amount is helpful. We’ve received anything from $2 – $100 in gift cards for a wide range of things. The other day, after all the Edible Arrangements were done, I felt like I was getting sick and really wanted some oranges. Being that oranges are out of season and quite pricey right now, there was great comfort in knowing we could use a gift card to the grocery store to buy oranges. We received a few gift cards to some local restaurants, too. While I’m not ready to go out to eat yet (too tired, physically uncomfortable, etc.), our first adventure as a family is going to be such a treat! We can’t wait to go out!

5. Cards and words of encouragement. There are two things I don’t do well — arts/crafts and mailing letters. So, believe me when I say I have an immense appreciation for anyone who does either of those things. In the week leading up to the surgery, friends sent me beautiful cards, crafts, and inspirational gifts. I took all of these to the hospital with me, and I continue to keep them by my bedside. I frequently re-visit old posts and emails and read what friends, and strangers, have left for me. These keep me going, especially on the really tough days.

To anyone reading, I do read each and every single comment, email and letter sent to me. Every single one. And, I am so thankful that you take time out of your day to write. I may not be able to write back each time, but please know that I hold each one of your words close to my heart.

6. Entertainment. I wrote in this post here about things you can buy for your mastectomy friend. These include DVDs, iTunes gift cards, Amazon gift cards, games, Netflix subscriptions, etc. It’s tough passing the time when you can’t use your arms or really get out of bed. I didn’t watch anything in the first 5 days — my eye sight was affected by the medications and I just didn’t have the energy. But, after Day 5, I was really interested in watching movies and trying to laugh a little bit. So, these gifts were a huge help!

7. A spontaneous grocery run. A friend of mine called while she was at the grocery. “I’m here already. What do you need?” I asked her to pick me up 2 loafs of bread. It was one less stop my husband had to make, and yet it provided the bread we needed for more than a week. That was awesome. I don’t feel comfortable making a list and asking anyone to go get something, but hey, if you’re there and you’re asking, I’m all for it! :) That was a really helpful treat!

8. Some quick household tasks. Whenever my sister Grace comes over, she always offers to wash the dishes. We’ve often said, “No” but it’s great having the option to say “Yes.” If you’re going to visit your post-mastectomy friend, and she’s usually okay with this kind of stuff, just go ahead and do the household task. Sometimes it’s in the wording, too. Rather than ask, “Do you want me to walk the dog today?”, say, “I need to go for a walk and wanted to bring your dog with me. Is that okay?” Yeah, it’s kinda sneaky. But, for me, I’m a control freak. And, I hate feeling like someone is doing something because they think I can’t handle it. If you know it’ll be a good thing, and you know your friend might feel bad for saying “yes”, then phrase it in a way that it is a benefit for you. After all, doesn’t helping someone benefit you — makes you feel good, too, right? That warm fuzzy feeling.

*****

Okay, on to a post about how to help yourself prepare for pre- and post-mastectomy. You can see my “To Do List” here.

But, the following is more of a “To Do List” when you have little to no help post-mastectomy. These are tasks that should be set up prior to surgery to make life post-surgery as easy as possible. This list, in particular, was really inspired by a woman’s message on a board where she wrote, “I have no friends, no family, and no help post-mastectomy. What should I do to get ready?”

WAYS TO HELP YOURSELF PREPARE FOR MASTECTOMY

(Items ** are particularly important if you have absolutely no help from friends or family)

1. **Meet with a social worker. Every hospital has a social worker and case manager who is responsible for helping you to adjust and get connected after your surgery. It would be wise to ask your doctor who that social worker might be. PLEASE get in touch with the social worker before surgery. Likely, the social worker is very knowledgeable about different organizations who reach out to patients dealing with cancer or cancer related surgeries. Given that I don’t remember much from the hospital, nor really much after the hospital, it would be wise to have these conversations before you are on painkillers.

2. **Contact a local church or service organization who might have groups already set up to do outreach work. Some local churches have, typically, Women’s Leagues who go and visit the sick or elderly. You’re not asking for much – just someone to check on you if needed.

3. **Within reach. Put anything — and I mean anything — within arms reach of you. Raising your arms or even lifting anything heavy will be impossible, and damn right painful, for a few days. Here are a few things to think about:

  • dishes, cups and utensils should be placed on a counter to avoid opening cabinets or reaching
  • try to put things in plastic baggies rather than tupperware. I was surprised by how difficult it was to open and close tupperware containers.
  • toilet paper – the last thing you wanna be doing is hunting and searching in pain and in, well, uh, pain
  • Extra strength Tylenol (no Ibuprofen for 2 weeks before or after surgery)
  • Stool softener
  • flushable wipes
  • shampoo and conditioner in travel sized bottles
  • toothpaste, toothbrush
  • garbage bags – just fill up a small plastic grocery bag of garbage to throw out. You won’t be lifting heavy garbage bags for at least 2 weeks…

4. **Single serving meals. If you are preparing meals for yourself, make them in easy single serving containers that can be put into a microwave with very little fuss. And, label them with the date you made them, ingredients, and heating instructions if needed.

5. **Reminder schedules. Before surgery, I made sure I put together a calendar of major events — particularly when bills were due or if certain phone calls or follow up items needed to be done. I had no sense of time after surgery and was so thankful that I had written information down prior to the big day.

6. Get your beauty stuff done. In the weeks before surgery, I got my hair cut, nails done, and eyebrows waxed. Yes, it’s vain. Yes, it’s unnecessary. Yes, I did it. And, yes, it made me feel good. In fact, when I first took and posted my post-hospital photos, friends commented, “Well, your hair looks good!” That brought me a great laugh, and, yes, my hair did look good ;)

7. **Tasks to get done. I did one last grocery and supplies run before surgery: bought diapers, wipes, school snacks, medicines, etc. And, if you need them, be sure to purchase your ‘monthly items” like sanitary pads or tampons. Basically, I purchased anything I would need for the next 30 days. I’m so glad I did this. And, of course, I made sure everything was placed in reachable areas.

8. Post your Task List to Get Done. I get it. Not everyone likes to air their business out on the internet…. However, if you have friends asking “How can we help?” then pass along your To Do List.

9. Accept it. I hate asking for and accepting help. I really do. Yet, I know how important it is. I am an OCD, Type A Super Mom who feels offended when I can’t do it myself. And, this was a great slap of reality when it was time for me to Just Accept It. I also had to accept that people wanted to help; they wanted to feel useful. So, whenever I said, “No, I got this”, I was denying a friend the ability to help me. It’s still a very difficult pill to swallow. And, when a gift is offered to me, I have to repeat “My friend wanted to do this/give this/send this.” I have to just accept it.

10. Write thank you notes now. I wrote my Christmas cards in October. It seemed silly, at first, but I’m glad I did it. I sent them just after my surgery in November. I had also stocked up on lots of Thank You notes, stamps, and pens and placed them on the table. Prior to surgery, I did my very best to immediately write and send notes after I received something. Just days after surgery, I tried to send notes but could barely hold a pen. The simple task of writing made my chest muscles burn and my sides light up with pain. While I’ve tried to keep up via email with my “thank you’s”, it’s going to be a long road before I can write a proper note. So, I’m glad I did as many as I could leading up to the surgery.

11. **Transportation. You’ll need someone to drive you home from surgery; and you’ll likely need a ride at your first follow up visit. If no one can drive you, be sure to keep the number for a local cab. No bus. No subway. The pain is awful just after surgery, and I honestly cannot imagine using public transportation to get home after your mastectomy. Again, if you cannot afford this, work with the hospital social worker to see if there is a cab company that might offer free or reduced rides.

12. **Find your phone charger or make sure you have a phone near where you will be at home. I have a cell phone that I carry with me everywhere. If you’ll be home alone, be sure to keep a phone near you in case of emergency.

13. Bring a pillow from home to the hospital (or in the car that will take you home). Even at Day 13, car rides are painful. Part physical, part emotional, the feeling of a seat belt pressing against my chest or the thought of an airbag smacking me causes anxiety. My mom suggested a bedroom pillow that I just keep on my lap. It helps me feel safe. It helps me feel cushioned, even if it is merely an illusion. But, it works.

14. Purchases. I can’t stress enough the body pillow, Extra Strength Tylenol, a water bottle, and some button down pajamas.

15. Exercise. If you have enough lead time before your mastectomy (even a few weeks helps!), try and exercise. Walk. Work on your core muscles. If you’ve read this blog, you’ll know that I’m a plus sized woman. And, one of the best things I could have done was to exercise prior to the surgery. It made recovery better, endurance better, and getting in-and-out of bed easier. I don’t mean start working out hours a day, but give yourself a great gift and start moving more than you did yesterday.

*****
My surgery and recovery was just that — MY surgery and recovery. Every patient is different. For the first time today, I saw my sister’s reconstruction. Her breasts look completely different from mine. Her scars are different. Her implants are different. Her shape is different. Her recovery was different and her healing has been different. We lead different careers and lifestyle needs.

This list is simply what was helpful for me. And, I hope it sparks some interest for you in what you need to do to get through the first few weeks post-mastectomy.

There are so many places to find support. FORCE and Bright Pink are two great places for BRCA and information!

 

Peace, love and preparing as best as you can,

Liza

PS… I just realized today that my surgical scars are not 5 inches, as I’ve posted in the past. They are EACH 8 inches long. Yes, I’m bad @ss. I have 16-inches of scars on my chest. Don’t mess with me.

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7 Responses to SOME HELP

  1. olivia says:

    Hell yeah to women with chest scars! I love my scar, join the club, Liza! :)

  2. olivia says:

    PS. I meant “WELCOME” to the club! :)

  3. Allison says:

    Liza,
    I must admit that I have not been following your blog as often as I intended. I got caught up in the day-to-day activity at school and focused primarily on what was on hand and what I needed to do. I feel a bit selfish now. I’m very glad to read that though the various aspects of healing have been difficult and painful, you are healthy and doing well.
    As I was catching up on your posts, I started making a list of things that I am thankful for. The list is simply for myself, to remind me in this stressful end-of-the-semester time, that I have many things to be thankful for. I plan to pause now and then in the next 2 weeks to revisit the list and keep it in mind as I stress or worry about the relatively minor things that arise.
    Also, I am thankful to know you. Thankful that you write this blog and I can see how strong of a woman you are. You inspire me to strive to be an equally strong woman.
    Thank you and I hope you continue to feel better and better!

  4. Laurie says:

    Liza! I am one of those silent readers who usually does not post, but appreciates both your honesty and the information your blog provides. I am three weeks from surgery (bilateral mastectomy with expansion) and am BRCA 1+. You mentioned a pillow you really liked and I can’t find the reference… can you let me know what you would recommend I purchase before the surgery? Thank you… for the response and for every word of every post that you put out there so women like me don’t feel as isolated. Best, Laurie

  5. Sarah says:

    Thanks fo rth posting. I have never even heard of you, but this was one of the only sites I have found that gave me concrete things to do for my cousin. THANK YOU for sharing. Your courage is astounding. God Bless you.

  6. Ashley says:

    Hi Liza,

    I know it’s been about a year since your surgery, and I hope that you’re doing well. I just found your blog and wanted to tell you how helpful it’s been. My best friend, Erica, had an elective bi-lateral mastectomy with reconstruction yesterday because she has the BRCA gene. Her mom had breast cancer twice before finally choosing a bilateral mastectomy, and at least one woman in every generation of her family has had breast cancer for as far back as she can tell. I’m so proud of her for the selfless choice that she made, and when she’s feeling up to it, I’m going to share your blog with her. Thanks again; it’s been really helpful, inspiring, and uplifting to read about your journey.

    The very best wishes,
    Ashley

  7. Angela Mayberry says:

    Thank you as I am reading this outloud to my wonderful husband he is pointing his fingers at me… and his new words to me are… now hunny… you have to accept things being offered… you would not want people to feel bad would you?!?!? you were so right… the best gift you can give is a tub of Huggies baby wipes. my hubby wants to thank you for the suggestion. today is my day 6 and drains come out on day8.thanks for your blog it has helped alot.

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