Double mastectomy, can you look at my list and tell me if I've thought of everything?

[TheFakeOffBakeOff]

I'm having a preventative double mastectomy and I'm starting to plan what I'l need for my hospital stay and for when I come home. I haven't had any other operations so I don't have any experience of what I will need.

In hospital:
Lip balm
Wet wipes
Antibac gel
Tissues
Throat lozenges
Hair brush & toiletries
Slippers, nighties, dressing gown
Towel

For home:
Extra pillows to get comfy
Frozen meals in freezer
Extra childcare
DH booked time off
Box sets to watch
Disposable bed mats (in case my drains leak on the bed)

Will I need things like wound dressings and micro-pore tape for home or will I be given things like that if I need them?

Someone said I'd be given HiBiScrub sanitising wash to use at home when showering pre-op but they haven't mentioned that to me at the hospital at all. Do I need to get some?

I've had a pre-op assessment appt already but they said I need to go back in for another appt a week before surgery.

Fake what a good idea to plan, I would add earplugs and a sleep mask to that list, along with some light reading. I'm also a little fussy about pillows so how about one of your own, and a pashmina to make you extra snuggly.

You can always ask the nurse at pre assessment about the hibiscrub showers, these are sometimes used quite close to the operation.

I'm sure others will be along with great ideas. :)

Make sure your nighties are ones that open at the front - for ease of wound checking.

Knickers (they aren't on your list so not sure if you were taking any - its just that when there are visitors floating about its more comfortable to not be naked under your nightie!)

Cordial/squash is nice - the atmosphere in hospitals is very dry, and its nice to have a change form plain water.

Something to read, and a pen for writing down anything you need your Dh to get for you, and if you want to do a crossword or something.

A bit of cash so you can buy papers/mags/ tokens for the TV

MP3 player is nice -sometimes after an op you don't feel up toreadinso some favourite musicto listen to is nice (and if you like audiobooks you could load some onto you MP3 to listen to)

If you go home with your drains in, you'll be visited by the district nurse and she'll bring dressings with her and leave you some spares.

You might be given something by the hospital but if not two little bags that will go over your shoulder to put your drains in once you are home, makes walking about carrying them easier (our hospital has little knitted bags made by volunteers - not sure if this is common or not though)

If you haven;t had surgery before, don't be alarmed if you feel groggy for a while afterwards - I find it takes me a good week to ten days to properly get a general anaesthetic out of my system.

if I think of anything else, I'll post again.

Good luck

Flip flops to wear in the showers.

Sorry that you are having to go through this Hugs xxx

yes, flipflops or crocs for the shower

some tinted moisturiser and your bare minimum make up. I just had a hysterectomy and it helped me feel feminine aand normal

some bottles of water and/or juicy water stuff like drench. The jugs were changed two/three times a day when I was in, but warm bottled water still tasted better.

some snacks like crackers, dried fruit, biscuits/cereal bars and fruit. The food was terrible and portions incredibly small. I was only in for a couple of days, but on two occasions found the food on the menu inedible. (I'm coeliac though, so it was difficult)

a couple of carrier bags to use as a bin. The bin in my room was over the other side of the room which I couldn't get to as I was pretty much bed bound for the forst 36 hours!

some mouthwash or rinse. I threw up after the anaesthetic and it helped me feel clean till I could get my teeth cleaned.

ear plugs and eye mask if you are going to be in a shared ward. I was luckily in a single room, but had to keep my door open so the ear plugs would've been handy, especially as I was right across the corridor from the nurses common room

the hibi scrub would only be given if you have tested positive for MRSA to decolonise you. Have they done the swabs?

Thanks for the replies, I've just been busy doing my online supermarket shop. I'll just finish my checkout and then I'll be back. Thanks again

Lacka They did do swabs for MRSA, they said assume it was clear if I didn't hear anything so I guess I must have been ok.

Kurri I have a cheapie bumbag after someone said they had their drains in one and it worked well, I was planning to just bin it afterwards. I'll keep it as a back up and see if they offer anything at the hospital.

I've bought two cotton, button all the way down nighties. I'll have to remember to put knickers on underneath ;-)

I'll add snacks, drinks bottles, books and an MP3 player to my list. I'll add flipflops too, will I be able to shower afterwards? I thought I wouldn't be able to shower until after the drains are out?

Make up is a brilliant idea, I am usually made up and to be honest I don't feel myself without it. So if I'm able to, and want to, it'd be nice to have a basic layer of make up on. I'll get a one-step-face-base from Bodyshop, I've got on well with them in the past on holidays where I just want a quick touch up.

I've known it was coming for ages but now it suddenly feels quite soon (June) I'm beginning to freak out!

It might depend how many drains you have (I had an LD flap reconstruction so had 6) but I needed 2 small shoulder bags to carry them (I can't see how a bum bag would work, mine were bottles that had to be kept upright, but not sure if they always are). Also I preferred PJs to a nightie so that the drain tubes didn't have to go out the bottom of a long garment and loop back up for carrying. If you've only got 2 drains this probably won't be such a problem as you can probably have them under your nightie.

I didn't shower with the drains in but you might want flip flops for the hospital bathrooms anyway as you might want to strip-wash.

Dry shampoo is good. Drinks and drinking bottles a must.

All the best, you are so very brave.

Also I preferred PJs to a nightie so that the drain tubes didn't have to go out the bottom of a long garment and loop back up for carrying. If you've only got 2 drains this probably won't be such a problem as you can probably have them under your nightie

Hmmm, hadn't thought of that. Will have a look out for some PJs then maybe. I think I might only have 2 drains, I'm not having any reconstruction so its more straightforward.

Tango Thanks, though I can promise you I feel anything but brave I feel totally shit scared actually. I'm not good with pain, I'm a bit of a wuss, I can't stand hospitals, I'm not going to have any boobs anymore. Its weird, I keep looking at them and thinking 'not for much longer'. Feel sorry for my DH, he says it doesn't matter but I will look so different after. So basically I'm not at all brave, just too terrified to not have it done and die young of BC like the others in my family. Grateful I have the chance to take action to protect myself though, really fucking grateful actually.

I took my own pillow when I had an operation. Such a relief to sleep on a pillow that smelled of home, and was familiar. It also helped when trying to get comfortable. I recommend taking it in a coloured or patterned pillow case though so it doesn't get mixed up with the hospital ones.

I would also take some flapjacks or other biscuits/crackers in case you get peckish.

At the pre-op the nurse said not to bring much in with me so I thought that they may not allow a pillow in. I guess that my DH could bring one into me in the afternoon when he come in to see me.

I was really upset to find out that I have to go in the morning on my own. They said DH could come with me but only whilst I check in, then he'll have to leave. So they said he'd only be able to stay for ten minutes whilst I check in. I'm going to be really nervous and whilst I wait around I assumed I would be able to have someone with me, but I have to wait alone. She explained why and I understand their reasons but it still seems a little cruel. Apparently he just has to keep phoning the ward to find out when I'm out.

Take a few magazines with you - I found that post-op in hospital I find it difficult to concentrate on reading a book but easier to dip in and out of magazines (I'm not sure if it's down to the anaesthetic/meds or just because there's so much going on around me).

Snacks and drinks too as the food can often be somewhat unappealing or arrives at the wrong times.

I didn't think I was brave either, but I've come round to the idea over the years when I hear of other people taking the plunge . I was incapacitated for quite a long time with the recon (at least 4 weeks) but your recovery should be much much quicker.

5 years post PBM for me, and I don't regret it for a second. Waking up after the op knowing BC wasn't going to get me was weirdly euphoric in spite of the sacrifice (or perhaps because of the drugs!).

Hi

I had a preventative double mastectomy with immediate reconstruction in 2009. Please don't worry or be scared. It wasn't as bad as I thought it was going to be.

I would say the main things I made use of in hospital were hair bands to keep my hair off my face/tied back and dry shampoo. A big pack of tissues and baby wipes. A face spray/spritzer/moisturising spray and facial wipes.

Mints/smints were good for keeping my mouth feeling fresh. Magazines, books, puzzle books etc.

As already mentioned, front fastening pjs were better than a night dress. I'm not sure if anything has changed since my op but when I was discharged I had to have a sports bra to go home in. You will also need slippers and dressing gown while you're in.

Once home I lived in trackie bottoms and zip up trackie tops.

Just wanted to wish you all the best. I'm a BRCA2 gene carrier and I've never once regretted or doubted my decision.

As someone with breast cancer I'm sure you're doing the right thing, wish I'd had the chance to prevent it. Seems cruel they won't let your dh stay with you to wait. Hope all goes well

Thanks all, your reassuring words are very welcome

RedRoses They haven't mentioned a sports bra at all, or a surgical bra. I assumed it was because I'm not having reconstruction I won't have anything to put in one!

Tango That makes total sense to me, I can't wait to be in a position where I'm not worried that I'll get BC. I find myself saying only another x years until I outlive mum, only z years until DD is the age that I was when I lost my mum. Its so morbid (and self indulgent) and I can't wait to be free of the worry.

The funny thing is I was 5 when my mum had her mastectomy and my eldest will be 5 when I have mine.

Malteaserzz I know you're right, like I said I'm so very grateful that I have the chance to keep myself safe.

People say things like 'that must have been a hard decision to make' but actually it was the easiest decision in the world. I look at my DDs and it was just a no brainer!

I would be tempted to push about having your partner to wait with you, it's worth a try. Thinking of you, sending in mumsnet hugs. West Wing box set might not go amiss either.

I did push initially but they said there was nowhere for him to wait as those of us waiting for surgery that day will all be together in a waiting room as because we'll all just be in surgical gowns they can't allow any male partners in. I wonder if I could push to have a female friend in the waiting room with me?

I think you could have a chat with Pals about this too as it is really not unreasonable to have someone with you, and yes it's hard to argue about a female friend.

Oops sorry I totally missed you weren't having a reconstruction too!

I had to go in the night before my op and wave my partner goodbye that night so spent a mostly sleepless night on my own. I was first on the list the next morning. My partner went to work as normal to help take his mind off it and phoned at lunch time for an update.

I was actually signed off from work before the op as I was so anxious about the whole thing but by the morning of the op I think I had reached worry overload and come out the other side and was quite calm!

Please speak to them again if you feel you would like a female friend to be with you beforehand. Is there a breast care nurse you could perhaps ask?

Will you come back on afterwards and let us know how you got on? It's not long now until the op and then this business will all be behind you. Make the most of the recovery, I had 6 weeks off work and just enjoyed the rest from life, if you know what I mean!

I will be thinking of you. Just thinking of my daughter got me through it too.

I've been out today and I've swapped my button down nighties for some button cotton pj's, bought a lightweight dressing gown too. Also bought a lovely zip up hoodie.
Went into Primark and bought a few baggy, boyfriend style tshirts so I can have some comfy clothes once I'm home.

Also bought a cushie head support for sleeping on my back and a cushie roll pillow to help me get comfy.

Bake off, when I had my single mx with immediate reconstruction, I took button up tops & also a V pillow. I downloaded BBC iPlayer on my kindle to watch downloaded programmes. I took Vernacare wash foam in with me, face wipes, flavoured water, mints & photos of DH & DCs.
Sending best wishes

re: pain
I had a double mastectomy without reconstruction about 10 years ago.

The worst bit as far as pain was concerned was when the drains came out. Apart from that there was no actual pain, just discomfort.

Speedy recovery and all the best

Socks. Last time I was in hospital waiting around for an op, my feet got terribly cold. I was cold as well, but that would have been partly from not having had anything to eat.

Good luck

All the best - I will use your list as I am having a bmx in two weeks (not preventative alas, already have cancer). I have the BRCA2 gene and my little sis will be having her preventative mx next year.