Post-Mastectomy, what support would you want most?
November 20, 2017 9:47 AM Subscribe
My mom (64 years old) has recently been diagnosed with breast cancer and will be having a mastectomy sometime in the coming weeks (she does not yet have a surgery date, but was told first week of December was most likely). She has opted for a mastectomy and no reconstruction. We do not yet know what (if any) further treatments will be required, and will not know that information until 2 weeks post surgery. What can I do to support her emotionally and physically in the uncertain days leading up to and following the surgery? Difficulty level: I live far (like, most of a continent) away.
Generally, my mom is currently feeling very positive, optimistic, and healthy. She has good information and resources, a good surgeon and primary care physician, a good familiarity with navigating the Canadian health care system, and will have both my dad and her sister (a retired RN) in the house with her around surgery time. My siblings both live within driving distance (1.5 hours away, and ~4 hours away, respectively), so they will also be able to be on hand for her if/when she needs them.
Currently, I'm debating whether or not I should fly home (I live in North Carolina, Mom is in British Columbia) early to be there for the surgery? Or if I should just stick with my original holiday plans (made well before the diagnosis) and head home mid-December...
Assuming I decide to NOT fly out early, what can I do to be supportive/helpful/not feel like a useless blob from far away?
Also, I know everyone's experiences are different, but if you or someone close to you has gone through this surgery, I'd be very grateful to hear your experience of the following:
- what was most useful/appreciated in the pre-surgery lead up?
- what was most useful/appreciated in the immediate recovery period? Later recovery?
- did having people around help? Or feel overwhelming during recovery?
- How did you navigate holiday craziness and surgery recovery? (My fam is a big Xmas fam, and mom is insisting that we will still do Xmas at her house)
- what forms of "help" and "support" actually felt more like a burden to you?
- how long was your recovery? How much help did you need or want?
I'm looking for suggestions for practical means of support, but also emotional ones. I'm also (of course!) talking to my Mom about what she wants/needs/feels, but would love to have some perspectives from people who have been through the reality of mastectomy surgery (both as a patient and as a family member/friend) as well.
Thank you!
Generally, my mom is currently feeling very positive, optimistic, and healthy. She has good information and resources, a good surgeon and primary care physician, a good familiarity with navigating the Canadian health care system, and will have both my dad and her sister (a retired RN) in the house with her around surgery time. My siblings both live within driving distance (1.5 hours away, and ~4 hours away, respectively), so they will also be able to be on hand for her if/when she needs them.
Currently, I'm debating whether or not I should fly home (I live in North Carolina, Mom is in British Columbia) early to be there for the surgery? Or if I should just stick with my original holiday plans (made well before the diagnosis) and head home mid-December...
Assuming I decide to NOT fly out early, what can I do to be supportive/helpful/not feel like a useless blob from far away?
Also, I know everyone's experiences are different, but if you or someone close to you has gone through this surgery, I'd be very grateful to hear your experience of the following:
- what was most useful/appreciated in the pre-surgery lead up?
- what was most useful/appreciated in the immediate recovery period? Later recovery?
- did having people around help? Or feel overwhelming during recovery?
- How did you navigate holiday craziness and surgery recovery? (My fam is a big Xmas fam, and mom is insisting that we will still do Xmas at her house)
- what forms of "help" and "support" actually felt more like a burden to you?
- how long was your recovery? How much help did you need or want?
I'm looking for suggestions for practical means of support, but also emotional ones. I'm also (of course!) talking to my Mom about what she wants/needs/feels, but would love to have some perspectives from people who have been through the reality of mastectomy surgery (both as a patient and as a family member/friend) as well.
Thank you!
Best answer: I had a preventative double mastectomy a couple years ago. I also needed a lot of help the first week and less after that, though I still couldn't lift anything heavy or drive for quite a while (so I needed help with things like groceries).
As for what would be helpful, I second the suggestion of things to watch. Maybe a Netflix subscription if she doesn't already have one? I was unable to concentrate on books for quite some time after my surgery. Also, anything to help make her comfortable -- really soft pajamas or lounge-wear, blankets, shawls, etc... I found sleeping on a wedge pillow to be helpful since I had to sleep on my back. Also, completely essential are heart-shaped pillows. There's an organization in the UK called Jen's Friends Mastectomy Pillows (you can find them on Facebook) who will send her some for free, or you can buy them from stores that sell post-surgical stuff. I put them under my arms to ease discomfort and between my chest and the seat belt in the car.
Easy to prepare, healthy food is good to have around. Things like pasta or rice salads (loaded with veggies and some kind of protein) for lunch, fruit, mini savory pies, etc ... It was nice to have something I could get for myself. Oh, also popsicles were great the first few days when my throat was sore from surgery.
If there's already someone to help with practical things in the first week, it might be better to visit later when it will be nice for her to have company. I didn't have a lot of energy to be social, so it was nice to have people I was very close to around, but harder to keep up with others. It might be helpful for you to send occasional updates to her friends (or whoever she wants updated) so they know how she's doing, but won't expect her to respond (though I did really appreciate every card and message I received!)
Immediately post surgery, I honestly wasn't dealing with any of the emotional components of the transition -- there was a lot of that leading up to surgery, and more in the following months and while I was doing reconstruction. Post-surgery I was really just focusing on my physical recovery.
I hope some of this is helpful. Feel free to message me if you have any questions!
posted by tangosnail at 1:05 PM on November 20, 2017
As for what would be helpful, I second the suggestion of things to watch. Maybe a Netflix subscription if she doesn't already have one? I was unable to concentrate on books for quite some time after my surgery. Also, anything to help make her comfortable -- really soft pajamas or lounge-wear, blankets, shawls, etc... I found sleeping on a wedge pillow to be helpful since I had to sleep on my back. Also, completely essential are heart-shaped pillows. There's an organization in the UK called Jen's Friends Mastectomy Pillows (you can find them on Facebook) who will send her some for free, or you can buy them from stores that sell post-surgical stuff. I put them under my arms to ease discomfort and between my chest and the seat belt in the car.
Easy to prepare, healthy food is good to have around. Things like pasta or rice salads (loaded with veggies and some kind of protein) for lunch, fruit, mini savory pies, etc ... It was nice to have something I could get for myself. Oh, also popsicles were great the first few days when my throat was sore from surgery.
If there's already someone to help with practical things in the first week, it might be better to visit later when it will be nice for her to have company. I didn't have a lot of energy to be social, so it was nice to have people I was very close to around, but harder to keep up with others. It might be helpful for you to send occasional updates to her friends (or whoever she wants updated) so they know how she's doing, but won't expect her to respond (though I did really appreciate every card and message I received!)
Immediately post surgery, I honestly wasn't dealing with any of the emotional components of the transition -- there was a lot of that leading up to surgery, and more in the following months and while I was doing reconstruction. Post-surgery I was really just focusing on my physical recovery.
I hope some of this is helpful. Feel free to message me if you have any questions!
posted by tangosnail at 1:05 PM on November 20, 2017
Best answer: My top surgery was also technically a double mastectomy. I had just turned 40.
Lifting your arms above your head and lifting anything over 5lbs is difficult and discouraged. Leading up to the surgery, I'd help your mom prep her home (clean up, put things at counter height to prevent the need to reach, etc.), and also do a little self-care (I REALLY wish I had gotten a haircut before bathing was verboten for a week-and-a-half).
Immediately after, the worst for me was sleeping on my back. A neck pillow and bolster tend to be the 2 most universally appreciated recovery items.
The first day, I needed someone to pull my underwear on for me, ha ha. First few days, I needed helping making meals. First week, I could not drive. By week 2, I was pretty independant, albeit achey.
I made a whole checklist of useful stuff, which I revised during my recovery. Take a look.
posted by Wossname at 2:15 PM on November 20, 2017 [2 favorites]
Lifting your arms above your head and lifting anything over 5lbs is difficult and discouraged. Leading up to the surgery, I'd help your mom prep her home (clean up, put things at counter height to prevent the need to reach, etc.), and also do a little self-care (I REALLY wish I had gotten a haircut before bathing was verboten for a week-and-a-half).
Immediately after, the worst for me was sleeping on my back. A neck pillow and bolster tend to be the 2 most universally appreciated recovery items.
The first day, I needed someone to pull my underwear on for me, ha ha. First few days, I needed helping making meals. First week, I could not drive. By week 2, I was pretty independant, albeit achey.
I made a whole checklist of useful stuff, which I revised during my recovery. Take a look.
posted by Wossname at 2:15 PM on November 20, 2017 [2 favorites]
Best answer: One big emotional support tip: post-surgical depression is a very real thing, which can be triggered by anesthesia, even. Obviously, your mother will be wrestling with conflicting feelings of punching breast cancer vs changes to her body, and chemical imbalances caused by anesthesia and meds might complicate matters.
That being said, I think the biggest emotional impact to look out for will be the pathology and followup reports.
I found that keeping a journal was very helpful. It was rather dry, but helped me stay centered when I experienced things like suture rejection and some cosmetic results I wasn't totally pleased with. I took daily photographs of my scars in case the "does this look infected" question came up.
Btw, your mom should be able to do XMas if her surgery is the 1st week in December. I had to work 12 hour shifts doing costume repair at a big 4-day convention, 3 weeks after my surgery. I was fine, I just couldn't lift anything heavy.
posted by Wossname at 2:27 PM on November 20, 2017
That being said, I think the biggest emotional impact to look out for will be the pathology and followup reports.
I found that keeping a journal was very helpful. It was rather dry, but helped me stay centered when I experienced things like suture rejection and some cosmetic results I wasn't totally pleased with. I took daily photographs of my scars in case the "does this look infected" question came up.
Btw, your mom should be able to do XMas if her surgery is the 1st week in December. I had to work 12 hour shifts doing costume repair at a big 4-day convention, 3 weeks after my surgery. I was fine, I just couldn't lift anything heavy.
posted by Wossname at 2:27 PM on November 20, 2017
Best answer: I have a friend whose mom recently had a mastectomy, and her way of being supportive after having to return to her home city post-surgery has been to crochet soft and comfy fake breasts for her mom to pad her bra. They talk about colors and yarn types and padding levels, and it seems to really entertain her mom to have an array of daughter-made Boob Substitutes to choose from, and for my friend to feel good to have a concrete way to help even long distance. No idea if that happens to be a helpful thing that would work for your dynamics or skillset, or if your mom wants the padding at all, but I’ll offer it up as a suggestion.
posted by Stacey at 2:40 PM on November 20, 2017 [1 favorite]
posted by Stacey at 2:40 PM on November 20, 2017 [1 favorite]
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One thing you might be able to do from afar: Help her line up some gentle distracting stuff, like movies or TV shows. I was in a lot of pain and only wanted to watch very simple stuff, and didn't want to have to deal with finding things to watch, so lining up some silly tv shows to binge watch was helpful. Sending DVDs or a USB key of shows might be a nice thing to do?
One thing to suggest to the folks who'll be around immediately after surgery: Make sure they're well stocked with food and snacks. I also found it helpful to have a big variety of snacky stuff like crackers to nibble on, since I didn't have much appetite for a while. Likewise juice, flavoured water, tea, etc, to encourage me to stay hydrated. I also had this supplement recommended to me, FWIW.
Obviously, everyone is different, but I'd recommend against flying out based on my experiences. I was pretty overwhelmed and very very low energy, and having more people around was exhausting. Lots of friends wanted to stop by for quick visits and I found it really difficult, even though I appreciated it.
Re. recovery time: In the first week after surgery, I needed a LOT of help. I was basically bedridden, and needed people to prepare and bring me food, and help me get to follow up appointments, etc. The week after was much better-- I actually went back to work, which was a terrible idea. However, I was really low energy for a lot longer than I'd expected, and I found it really hard to manage having to take it easy. If your mom is also someone who likes to be busy, that may also be a challenge for her.
posted by ITheCosmos at 10:18 AM on November 20, 2017 [2 favorites]