Advice on Taking Care of a Spouse after a Mastectomy
My wife is considering double Mastectomy and I need to know what I need to prepare/learn/read/understand before and after the surgery? We live in the DFW metro. Do not know if this ?? Goes at this site or the caregiver site.
Appreciate any info.
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I did bring up the comment on washing her hair. She wants to discuss that matter with more of her friends who have had surgeries. When I take her out and about, all the post I read is beware of bumps and attempt to avoid all sudden stops or starts.
She will be ready to get up and move about and just feel free to move.
Thank you for the reply.
@sirref It helps to be prepared for some of those things prior to surgery. Because I am so short, my husband made me a little step so I could bend easily at the laundry sink. The first week or so he needed to wash my hair for me and after that I was able to handle it. As far as the bumpy rides – if you have available small travel pillows, they can be placed under the seatbelt which helps greatly. Some local ladies made some for breast cancer patients and I use mine to this day (Velcro that goes around seatbelt so pillow is on breast side).
@sirref Ferris, you have gotten some absolutely wonderful responses here, from people who have "been there" like your wife will be. I haven't been down that path of cancer, but do live with two other active cancers.
May I just say this: How smart you are to think ahead and find out this information that you will be able to use, before you need it, and answer questions you have! How lucky your wife is to have such a caring husband/partner in her corner! And how wonderful you both have each other!
I had another thought. I don’t know your family situation, but one of our sons lives closer than the other and they both wanted to come ‘home’ for the surgery, both at the time in late 20’s. I told them to hang in there until afterwards to see how things would be and my younger son dropped a little bomb by saying, “Yeah, but I can be there for Dad while he is waiting.” Covid may change things, but don’t be afraid to express how you feel too.
Double mastectomy on March 22nd, I was worried about the drains the most.
I have a great support team with 4 sisters, but my son (25) and daughter (29) both took FMLA and are going to be with me at Mayo for my surgery and at home for the drain care during recovery.
The training took many of the fears away. We did not think we could manage the drains and daily upkeep.
But realizing that we could touch and feel them while they trained us made the upcoming event less traumatic.
I can keep you posted on how we did? I am sure there will be some uncomfortable moments but I appreciate the love support and care my children are going to give.
The caretakers have the hardest job on this journey.
Caretakers love, worry, cry behind close doors and pray we are going to be OK.
Love my family for what they have done and the journey is not over!
You are doing the best as a husband/spouse and partner by just being there!
I'd had a hysterectomy years before my double mastectomy and had drains then, so I knew what to expect. Drains and emptying them aren't really worth worrying about—they're mostly a nuisance as you'll have lengths of tubing you don't want to catch on anything (some inches of tubing will be inserted under your skin and secured at the opening with a couple of stitches; pulling or yanking on the tubing can hurt if you're not holding onto the tubing either where it's secured, or along its length because of those stitches).
I found a cloth badge lanyard very useful—I wore the lanyard around my neck and using the loops built into the drains and safety pins, pinned my drains to the lanyard so their weight was supported (not dragging down on the tubing) and I could keep track of where they were. I had a couple of lanyards—I'd keep the drains supported with one lanyard while showering and then change to the dry one when dressing.
You will want to faithfully log every time you empty your drains and the amount of fluid collected by each drain—my doctor would only remove the drains when they quit pulling a certain amount of fluid in a 24-hour period. (P.S. I used Super Glue to close the holes when the tubing/drains were removed—reduced seeping and sped up the holes healing.)
You will probably find it more comfortable while resting/sleeping in bed to be propped up and it will be a lot easier to get out of the bed if you're not lying flat. If you are unable to use your arms to push yourself to sit up, a bath towel folded lengthwise (or similar wide strap, or belt) can be placed behind you and your caregiver can grab both ends to pull you towards him/her.
A volunteer support group at my hospital made and gifted crescent-shaped pillows to mastectomy patients; the pillows were similar to the neck/headrest pillows used by travelers to support their heads while napping—but bigger. When resting in bed, the pillow was placed on my chest, but below where my breasts used to be and wrapped around my sides to support my arms.
Try to get your painkiller(s) and other medication prescriptions filled a day, or two before your surgery, so they're on hand when you need them—supply chain problems can make it difficult to get medications and some of these meds (especially opiates) CANNOT be called in; you have to take a paper prescription to the pharmacy.
Getting medications before will be very important, even if you are comfortable with your pharmacy. We just had an issue with an eye drop that we had filled a dozen times, but apparently there is suddenly a shortage.
I just remembered that after my first mastectomy, my daughter had brain surgery, and because she has type 1 diabetes, I was present for the surgery and in the ICU afterwards. So not only did I not have help but I was focused on her health. We don't become helpless after this surgery and we are not sick, just delicate temporarily.
As a side note, I would add that having a paravertebral block before my mastectomies was hugely helpful with pain afterward. I had no pain for 2-3 days and did not need any pain meds in the hospital or for those 2-3 days, which avoided the nausea and other side effects of Dilaudid. For anyone facing a mastectomy or two, I highly recommend a paravertebral block!
We regretted not taking the advice to get or rent a recliner for my bilateral mastectomy recovery. My son gifted me with a post mastectomy drain pouch which was super helpful. The drain tubing and emptying was one of the worst things for me (I had a lot because I chose the reconstruction at the same time). My husband took care of me the first week and my son took care of me the second week. My husband would take me for walks often to help my system return to normal after having to take so many pain meds. Bring pillows to support your patient on the car rides to and from the doctor's office for follow-up visits as hitting bumps in the road and going over railroad tracks are not fun.
I had a double mastectomy with tissue expander placement last December. I scoured the internet for preparation tips, so I feel the need to help others prepare!
Here is a list of the things that did and didn’t work for me:
1. My husband (who helped me with my drains) and I really liked the Brobe. thebrobe.com It kept all of the drains and tubes tucked away so that they never fell out or got caught on anything. I wore this day and night for 2 weeks. The fabric is thin, so I would tuck it up in my jackets to go for walks and to even go to my first post-op doctor’s appointment. I went for walks daily with my husband which were quite tiring at first, but really felt great to get fresh air! He would drive me to a park where we would go for walks. I wasn’t interested in parading around my neighborhood post surgery. (Nice to be in a place where we wouldn’t run into anyone.) I may need to wear the robe again at my next surgery when I have my expanders swapped for implants.
2. Seatbelt cover. Never bought one. I just used a towel. Glad that I did not waste money on this item.
3. Breast pillow with arm cutouts. I never felt comfortable putting anything on top of my chest that would add any pressure to my surgical wounds. I have used it after I was allowed to lay on my side but never really used it for it’s intended purpose. I do feel like it was a waste of money.
4. Super soft throw blankets. I was given a few of these as gifts and they really were great for sleeping and bunching up under arms and along side of my abdomen.
5. Roll pillow. I have never been a back sleeper and actually have a lot of pain sleeping on my back. I used this to put under my legs at different times to adjust the pressure on my spine.
6. Have the post-recovery resting area in your home all ready to go. My husband bought a remote controlled adjustable bed that raises the feet and head. It came with a mattress as well. This was the most important purchase that we made in preparation for my surgery. Having the ability to raise the head of the bed allowed me to get out without assistance. Because it was a twin xl, I could put items on a stand on each side of the bed. This was very helpful as you need a lot of things easily accessible for those hours that you are awake waiting for time to pass by. We also put a standing lamp with a cord switch near the bed. The switch was taped to night stand so that I could easily get to it in the middle of the night, if I needed to drink water or eat crackers.
7. My hairdresser offered to wash my hair, but my husband enjoyed doing it. It was the best thing ever to have my hair washed and dried. Just having my husband massage my head felt good and kept my mind off my chest for a bit!
8. Have saltine crackers by your bedside to take with the pain medication. This really helped with the nausea and tummy aches. I am not a big snacker, but let me tell you, I went through a lot of crackers!
9. Have stool softeners ready and maybe some prune juice. The constipation was incredibly uncomfortable especially be cause you had to lay on your back. It certainly motivated me to get off the pain medicine as soon as possible!
10. For the first two weeks post surgery, I slept a lot, read books, texted friends and watched a little tv. My husband made dinners or served ones that were given to us by our sweet friends.
11. I think one of the most important things that my husband helped me with was pain management. I was very fuzzy minded for the first week, and it would have been hard to effectively manage my pain on my own. The key is to keep up with your meds. We alternated Tylenol and Oxycontin. (I would take Tylenol half way through my dosage time for the pain med.) My husband had a notebook in the bedroom to write down times and doses of medication as well as a separate sheet for drainage amounts.
12. For the first 3 days, I could not pick up a cup, so I used the hospital cup with the straw which was awkward. I think a water bladder like the kind that you put in hiking and biking backpacks would have been ideal. It is so important to drink lots of water!
13. Have your cell phone nearby in the house so that your wife can call you when she needs something. My vocal cords were stressed from the intubation, so I did not have much of a voice. With that said, have soup and ice cream ready for your wife for the first couple of days after surgery.
14. I have really liked a couple of bras that I purchased prior to surgery from AnaOno. Styles: Rora: most comfortable and stretchy. It comes with inserts./ Bianca: cuter but not as comfortable. These can be covered by insurance but the whole process takes a while as it requires a prescription from your surgeon. The quality is outstanding and I wore them for 2.5 months.
15. Have A&D ointment ready for your nipples if you have a nipple sparing mastectomy. This keeps the skin healthy and keeps it from getting more irritated. I also used this on my incision sites once the tape fell off.
16. A wipe board or small chalkboard for counting the days would have been fun. Passing each day was an accomplishment early on. At the end of each day, I would say okay I made it past day number….. I stopped counting at day 26, so that must have been when I started feeling better!
After writing all of this down, I am reliving my mastectomy experience. I am so very grateful that I had someone help me post-surgery. My heart goes out to those living alone and having to deal with this on their own. You are truly the strongest women! For women the have husbands, let them help you as it is a positive experience for all. They can feel so helpless and by allowing them to help, you can make feel better.
Good Luck with your wife’s surgery! This too shall pass and you will both be stronger because of this experience!