Looking for advice on what my sister needs post surgery

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candicefyke
candicefyke Member Posts: 1

Hello everyone

My sister is 32, and will be getting a modified radical double mastectomy as well as all lymph nodes on her left side removed on April 30. I have been looking for a double mastectomy pillow for her but have no idea where to start. If anyone can give me any ideas I would so appreciate it.

I would also like to put together a post surgery box for her with everything she could use and need. She has 2 young children as well. Any recommendations would be so amazing.

Shes terrified of the surgery and I just figure if I can even do these small things maybe it can help even in the tiniest bit.

Thanks everyone

Candice (worried sister)

Comments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2018

    I am sorry your sister is dealing with this at such a young age, not fair. Here is a link with some ideas and resources, including a source for some small pillows. I found that the buckwheat pillows from Bed, Bath and Beyond were useful because they are somewhat moldable (linked also) I sewed a flannel sham to cover it that was removable and washable:

    http://www.mycancerchic.com/mastectomy-preparation-guide/

    https://www.bedbathandbeyond.com/1/1/54445-sobakawa-buck-pillow.html

    I found it helpful to have a central basket near the bed that had: tissues, remotes, phone, lip balm, hand lotion, etc. that could be moved to where I was. In all honesty I didn't move it much - I was in the master bedroom most of the time, but it was great to have everything in one place. Keeping a log for medication is a good idea, there are phone apps, or you can print free medication logs if she prefers that method. You think you will keep track or remember, but it is wise to write it down. I did not have small children at home so I asked the pharmacy for non-childproof caps, but since there will be children there, maybe not. After a mastectomy it is near impossible to get the push down and turn type caps off though, so something to consider if the meds can be kept safe from the kids. Your sister will have drains initially and having a station set up for drain stripping (emptying) in the bathroom is a good idea. She will be given a little measuring cup, or disposable paper ones. Those, some gloves, little alcohol wipes for the drain bulb and to assist with squeezing the tubing to empty the drain, a bottle of pump antibacterial soap for hand-washing, and a log for writing down the amounts and time of day emptied - all good stuff.

    My husband got these lamp dimmers - excellent so you don't have to reach over to turn off the light:

    https://www.homedepot.com/p/Lutron-Credenza-Plug-In-Dimmer-for-Incandescent-and-Halogen-White-TT-300H-WH/100001525

    A gift card to a local salon - some are restricted on showers and arm usage so this is a good way to have a shampoo and blow dry. Also, an inexpensive plastic lawn chair for the shower is good. I used clean shoelaces to make a necklace to string the drains on for showering. A hand-held shower head can be helpful, particularly if she is restricted initially from getting the chest wet - you can wrap in plastic wrap to keep it dry, sponge bathe from the waist up, use the hand-held from the waist down.

    Place a few glasses, coffee cup, plates, etc., on the counter so reaching is minimized, I was alone during the day about 4-5 days after surgery so I had cooked ahead and frozen stuff in small portions that could be microwaved. I wasn't super hungry but it is important to get protein (preferably 100g a day) to assist in healing. Also, eating yogurt if on a post-surgical antibiotic is a good idea too to help with any GI distress. Gift cards for area restaurants for take-out are always good too!

    Button front pajamas are great - I would buy a size larger than usual to accommodate bandaging. Silky fabric is good for helping to slide in and out of bed. I wore pull on track pants and a zip front hoodie over a tank top that I could step into. Slide in shoes are also a good idea - flip-flops or mule type slippers. Lots of pillows for the bed are good, or a wedge pillow is useful. I did not sleep in a recliner, did not find it necessary, but you will see some recommend it. Here are links from this site to surgery suggestions:

    http://www.breastcancer.org/treatment/surgery/mastectomy/expectations

    Look at the header from this link for useful tips:

    https://community.breastcancer.org/forum/91/topics/699896?page=33#idx_980

    Lastly, maybe a fun age-appropriate toy or gift for each child - something that will occupy them.

    Hope this is helpful! You are a good sister!

  • Peacetoallcuzweneedit
    Peacetoallcuzweneedit Member Posts: 233
    edited April 2018

    Hi Candice -

    I was a worried sister too at one time. I have been thinking a lot about that time recently as well...so your post hits home. I also had a double mx in May 2017. SpecialK gave awesome advice - I will share what I did with pillows, because I could not lay down AND I did not have a recliner as so many other breast cancer sisters told me I should get to make life easier. I already had 2 king pillows on my bed and two standard pillows. I bought my king pillows at Costco, 2Pk. I went back and purchased two more firm ones....then I built a little foundation in the bed --> two kings on top of each other and then one in front and one placed behind my head and neck to support that area....it worked! I did not purchase any bras or shirts for the drains - my BS showed me how they would be pinned to my bra with a LARGE safety pin. I just unpinned them and drained the fluid, measured it, and then pinned it back, of course. (Also had to clean off drain head area) I did not leave my house for one week, because I could not shower for that long. My BS said --> lay there and watch Netflix and the more you move the more fluid you create with the drains. I WANTED THOSE DRAINS GONE!!! At my 7 day follow up I was able to get them taken out....

    Candice, I think you can prepare all you guys can and then there is waking up and going through it...Candice she is 32 - I would say let her go through it, hopefully everyone around her can be supportive in the sense of allowing her to be who she is that day/moment/etc. I remember having a disagreement with my BFF because I did not want another pain med, and I was told the doc said you HAVE to take these for 4-7 days after surgery. Well, I did not need another pain med, so I refused. My BFF said I needed to listen to the people around me, and while yes but not really...I still needed to be in charge of me when, everything (my life), had literally changed in a 5hr surgery or really the day I was diagnosed. My boyfriend is an emergency room RN (used to patient care) and he was great support..he pushed me enough to "figure it out" and then was able to think ahead for me about what I would need...."plastic cup because I can't really lift my favorite glass easily, and always full of water because I drink so much of it."

    Sending healing thoughts to your sis and love and support to you and your family...

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2018

    peace - great post! I did the pillow thing as you described too, and also just used big safety pins and pinned the drains to the side seam of my tank (an old school Jockey men's size small ribbed tank) - I was not wearing a surgical bra, just had bandaging. Your post reminded me of something else - an insulated cup with a LID and STRAW! I knocked my cup off the bedside table, um...twice, and it didn't spill because it had a lid - yay! Also, along with the above post - I hate pain meds, they make me twitch and I can't sleep, so I try to eliminate them and switch to Tylenol as quickly as possible. That said, initially I would suggest taking the pain meds on schedule because it is easier to prevent pain than to chase it after it has happened. However, as peace says, she will reach a point where she has to be the one to decide how much and when to take it because the pain may dissipate earlier or her threshold may be higher and she will need less. For me that was just under the one week point and I only took them around the clock for the first couple of days, then I could change to Tylenol during the day and only take a pain med at night for about another week, then I just took Tylenol only but for probably only another week. We are all different, so she will need to find her way on that.

  • Runrcrb
    Runrcrb Member Posts: 577
    edited April 2018

    these suggestions are great. I would add one thing- get her some prunes and have her eat 1-2 with each meal. Even if she limits pain meds the general anesthesia will contribute to constipation. Prunes are the easy answer.

    Good luck.

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