AIBU to ask for real-life mastectomy recovery tips?

[capybarasnoot]

My mum (70) is having a full mastectomy on one side in mid-June. She's been told she'll be in hospital for one night and then sent home the following day.

If you've been through this yourself, or supported a loved one who has, I'd be really grateful for any practical recovery tips. Not so much the standard advice (although that's very welcome too), but the little things that made life easier, more comfortable or less stressful.

For example, I was wondering about the journey home from hospital and whether a seatbelt cushion or pillow helped. I've also got things like cosy socks, blankets, books, soft music and easy meals on my list.

Were there any items you bought that turned out to be brilliant? Any unexpected challenges? Things you wish someone had told you beforehand? Or small acts of kindness that made a difficult time a bit easier?

Thank you. I'm trying to put together a little recovery toolkit for her and would love to learn from people who've actually been there.

Mine was bilateral, but coming home I had one of those seatbelt cushioned covers.

Drain holders were necessary, if she might have a drain then one would be useful.

I had a lot of complications with recovery because of having hypermobility spectrum disorder (clearly EDS) but I would imagine at 70 she may be more restful than I was at 39.

I had a simultaneous reconstruction using a flap from my abdomen, so I was in hospital for longer, and had some difficulty with mobility at first because my tummy muscles had to heal. My drains were out by the time I went home, but a cotton shoulder bag was supplied to anyone going home with them still in place.

I got a padded seatbelt cover that fasten with Velcro, years later I still use it. The set I bought from Halfords is thicker and more comfortable than the thinner set I got from Amazon. I had chemotherapy through a port below my collarbone and the belt sits right over the scar, so the padded cover is brilliant.

My cat loved to sit on my lap, or on my tummy if I lay on my back in bed. I kept a flattish cushion between her and my tender bits.

Wishing your mum a swift recovery.

My mum wears a lot of tees and sweatshirts so we needed to buy her some button down shirts and we had some of those disposable chucks pads for the bedding in case of any bleeding, oozing or whatever (it was fine in any case).

When she had radiation treatment the button downs were great because she used a lot of ointment which would have stained more special clothes. The hospital recommended homeopathic calendula ointment which seems weird but we diligently bought and used it when she got itchy and sore.

The nicest act of kindness was that DH’s wealthy friends lent us their city centre apartment near the hospital so we wouldn’t have to travel (thus wanting to protect the bedding). My mum needed two surgeries as the first (lumpectomy) didn’t get clear margins so this was so so helpful. Not translatable outside of these specific circumstances 🤷🏻‍♀️ We were just lucky.

Good luck to you and your mum for easy recovery ❤️‍🩹

I was first on the list and sent home that afternoon. She will need regular pain relief. On the way home she will need a cushion and padding for the seat belt.

I had a single mastectomy with axillary clearance, so I have a scar from my sternum to my armpit, and my drain was at the side. It was sore but not painful (for me). I didn't have that much drainage and my drain was removed by the community nurse after about ten days. I had visits every couple of days to check my drain, but if I had needed more frequent visits I could have had them.

I had a LOT of nerve pain in my arm after my surgery, every little touch was agony, even fabric touching it was agony, and I needed gabapentin for the pain, but it did resolve after a couple of months. It is more likely for somebody to have that kind of pain after axillary clearance than just a simple mastectomy. It is 2 1/2 years later and I have no more pain but I still don't have full feeling in my chest, my side or my upper arm.

After surgery it is really REALLY important that she does her exercises. They hurt, and she will need some support to encourage her to do them.

Listen to her, don't assume you know what she will want or need. It is incredibly frustrating when you, the patient, are told what what you want and need by somebody else. You can encourage her to eat nourishing meals and help to provide her with them, but if all she wants are pringles and Coca-Cola it's better than nothing (that was me). If she says it hurts, then it hurts. If she says she's fine then use your own judgement, but for goodness sake don't tell her she's not telling the truth!

She will need some help with the physical stuff until she heals. I'm not sure how much help you are going to be able to provide yourself, try to encourage her to take whatever help is offered. She won't be able to drive if she's on strong painkillers, so if that is the case she will need help with transport to and from appointments.

And it's not just physical pain she may be suffering from. Losing a part of you that is such a major part of your femininity can have huge psychological implications. Encourage her to accept counselling. I was given 6 sessions of counselling by a local cancer charity and I needed it. They also gave me 6 massage sessions, provided by a therapist who was a specialist in cancer patients. I found being able to visit a specific cancer centre (not a hospital centre, a supportive and helpful charity) so very helpful, but everyone is different. It may not be for her. but

And surgery, plus maybe chemo and/or radiotherapy is not the end of it. There may be on going treatment that continues for years that will have its own side-effects and problems.

This is what happened to me and what helped me, but there is no 'one size fits all' approach that will be the same for everyone. Allow her to be herself. Listen to her.

I second the exercises. Really important from the get go, it is painful but if she doesn't do them she is at risk of frozen shoulder.

My pain relief gave me really bad constipation. I had a portion of figs and dried apricots when taking the drugs as they cannot be taken on an empty stomach.

Take her easy to get into clothes for the trip home. Nothing that goes over the head. And possibly a shawl

It's tempting to get the hoover out etc on returning home but she must not!

Also pull up trousers. When going to the loo she can pull them up one handed. Pulling a pair of jeans up and down after a mastectomy is very painful!

Nightwear that buttons down the front

Yep easy to remove button front tops/shirts worked for me. Good wishes for your mum its tough for a few months and do the exercises with her x

Definitely a selection of tops that not only button up but can be whipped off over your head without unbuttoning as well. I got a couple of loose fitting blouses from Sainsbury's and they were a godsend. I felt as if I was constantly being asked to take my top off and I could take these off without needing to unbutton them.

Encourage your mum to use any support services or helplines that she is offered. I had a phone number for my breast care nurse and my hospital also had a cancer helpline I could ring if I wanted advice on any side effects I was having.

The chemo made the skin on the soles of my feet slough off. I was advised to use udder cream on them, the cream used on cows when they have mastitis! My nurse told me I could get udder cream made for human use, but it was exactly the same stuff you got at a farm supplies place!

Easy meals are a good idea, but I would also stock up on a selection of soups. I found that for a few days following each chemo session I totally lost my appetite and soup was all I could manage.

thank you all so much for sharing your stories, especially from such personal experience. I'm making notes on all of these points!

Personally I found the physical recovery quite easy. I didn’t really need seat belt covers or the cushion or anything and didn’t take pain relief except paracetamol. But this differs hugely between people so hard to predict. My understanding is that it can be very painful if you get nerve pain. And just the anaesthetic might be more difficult to recover from at an older age.

I found it mentally more difficult and what I really wanted was to be alone but couldn’t be because I needed my parents to look after the children. And my parents felt like they should be doing a lot for me physically so would constantly swoop in when I was doing something and would just walk into my room when I was trying to sleep etc. I sent them home early in the end and coped as best I could. I probably wasn’t an easy person to be with at the time but I think there’s a lesson in listening to what people actually want and responding to that.

You are restricted in how much you can use your arms so might need help e.g with hair washing and any lifting or reaching. Though I could wash my hair using my good arm.

I did really appreciate friends coming over and doing normal things together, like them taking me out to a cafe or watching a film.

I had a single mastectomy and node clearance and sent home same day - didn't have much pain at all. I just needed the odd paracetamol, make sure you have some in as mine didn't supply any pain relief for after. Might need help with things like washing hair though ask. I had lots of fleece blankets and cushions and went on a reclining chair. I was also told waking up from operation they would be doing another operation in a month's time. I also had things set up close to my chair so like a little table with ipad, drinks, pain relief to avoid needing to bend/stretch for things first week. Front opening clothes are useful, things don't need to get over head. If going to check ups its best to have top and bottoms rather than dress so don't need to take everything off for when they check you. Had to get post surgery bras.

I had a single mastectomy to flat, with a lymph node biopsy - is she having any lymph nodes removed? That was the worst part for me; dreadful nerve pain in my arm.

I was in early and discharged same day. Touch and go but around 5pm they let me home to my own bed.

Drain is a PAIN. I caught it on a radiator - still wince thinking about it!!

Things I’d buy:

Big V pillow to rest / sleep comfortably propped up
A nightie or nice pyjamas that buttons at the front
Huge drinking bottle to stay hydrated
Room to rest in with a TV! I usually read a lot but couldn’t focus on anything other than trash TV when recovering
A seatbelt protector (cancer research sell them)
Good healthy food - will help with recovery so much
Emotional support - don’t let her be alone when she has dressings removed / looks for the first time

I’ve had two mastectomies and lymph node removal. I found the physical element very easy to recover from. The lymph node surgery in the armpit was worse than the mastectomy itself. I didn’t have any drains at all on either mastectomy. Hospitals have different policies on drains.

No need for any sort of seat belt cushion. But the journey home was only about ten minutes for me. Button up shirts are good. Shoes you can slip into. Extra pillows in bed so you can prop yourself up a bit to sleep comfortably. Over the counter pain meds were all I needed. There will be arm movement exercises to practise several times a day after surgery. It might be helpful to put an alarm on to help remember. Drinks in a flask, meals prepared.

But the hardest bit is the mental side. A mastectomy is a big thing to come to terms with. I was 53 and then 54 when I had mine. It’s not just the cancer-ness of it. It’s the radical alteration to a fundamental part of your body.

Oh I just remembered something else. A friend booked me in for a wash and blow dry as I did struggle with arm movement for a while. It was so lovely and such a treat to have my hair washed and noone at the salon cared that I turned up in a pyjama top looking like a gremlin 8 days post op!!

Is she having a reconstruction?
I just assumed a mastectomy but perhaps that’s not right.

no reconstruction, you are right :)

yes she's having lymph nodes removed. oh my goodness the radiator/drain story made me catch my breath too!

Your mum may not have a drain, I didn't. I think it depends on the hospital. I had my operation in the middle of the afternoon, but still got sent home because I was a day surgery patient. I didn't have a lot of pain, but I felt very groggy when I got home and needed help to get to the bathroom during the first night.

Front fastening clothing and post surgery bras were essential, I still wear wireless bras now nearly eight years later because, unfortunately, I still suffer from nerve pain across my scar despite doing all the exercises.

After the first night, I didn't need to stay in bed, I got up from the first day, but comfy pyjamas so she can just relax are a good idea.

I went out for a short walk from the first day, too. I couldn't go far the first day and was accompanied, but just being outside in fresh air, listening to birds sing, looking at plants and trees was so uplifting and a very big part of my recovery, just being grateful that I was still alive. I built it up gradually. I ended up taking three months off work, but everyone's recovery is different.

Sending you and your mum my very best wishes, and I hope it all goes well.

Best thing I had was a v pillow. From dunelm. I slept a bit propped up and then sat against it on the sofa, was so comfy! Hope the surgery goes well xx

My mum had a double mastectomy with lymph node removal but opted against a reconstruction.

Clothing is important. As others have said, she’ll want things with buttons down the front that are easy to get on and off with only one hand and when she needs something to be looked at by a medical professional. Cotton is good. Nothing with lace or seams that will sit over the wound and rub against it, or make it itch. In addition to tops and nightclothes, she’ll need bottoms that are easy to pull up, and shoes she can slip her feet right into without needing to bend over too much. I don’t know what bras she’d need with reconstructive surgery, but my mum found underwire too painful to tolerate. And pillows. You can’t have enough pillows for her. Some to prop her up and some to rest her arm on.

My mum said that if things are still the same as when she had her surgery, she’ll be given exercises to do. They will be unpleasant and uncomfortable. But she will feel a million times more unpleasant and uncomfortable if she does not do them.

I haven't been though any of those myself ( and sending love to your mum and others who shared their experience) ..... Make sure you set some alarms on your phone / her phone or on a device so she makes sure she takes her medication (especially the pain medications) on time. It all gets muddled up after a while so a schedule or alarms... Some pill boxes will even could help.

She may be going through something awful but she is so lucky to have a daughter like you who is trying to help her like this ... I am sending her healing thoughts.

It is surprisingly time consuming the first few days after recovering from an operation. By the time you have had pain meds, navigated any going to the loo/teeth brushing etc, breakfast, physio exercises, where are you going to lie/sit/are you comfortable... you barely relax before it's time for the next pain meds/loo trip/meal cycle all over again. So do set aside your own time for this.

Be proactive with whatever pain meds she is given - find out on discharge when the last dose was, work out when the next is due, and get into a routine straight away. Don't wait for the pain to occur before deciding whether they're needed, at least not for the first week or so.

I found a small light cushion very useful, so that even when standing, I could have something wedged under my arm - the lymph node clearance was very sore.

Post general anaesthetic depression is very common, a few days post GA I suddenly feel like a weepy mess. But it passes and it helps to know that it's partly just a normal GA side effect.

good luck to your mum

Re: medication reminders... unfortunately I was quite unwell at various points during the whole of my treatment - unusually unwell - so had a lot of meds and was bedridden for a few weeks each time. To ensure I didn't over medicate, remembered what to take when, and when my various appointments were (community nurse, phone calls etc) I had a whiteboard set up where I could see it from my bed and kept that updated. Mine was actually sticky stuff that I put on the side of a cupboard, but a physical whiteboard would have been fine if I had had anywhere to put it.

I also needed an overbed table, (we bought one), a support for round the toilet (rented from the red cross) and a safety gate for the top of the stairs, as the bathroom is directly opposite (we already had one).

I found I needed an upright dining chair to sit on to do my exercises.

And one of the most useful buys was a box of disposable vomit bowls! I used a lot, but not all, of them and I still have some left 2 1/2 years later. I think when they all get used up I might actually get some more!