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Mastectomy on 17/4 - What are your words of wisdom?

Melrose15
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Jojo, I can imagine what you mean by needing a big serviette. It did make me giggle though, the thought of it!

Jane, I will definitely look into the 'been a boob' and the Caring Bridge. I have been inundated by people wanting to know what's going on and how I am so I can see how invaluable that would be. The false boob is something I'm not looking forward to 😞

Wendy, How did you get on with your appointment. Are you going for the reconstruction? I have my appointment tomorrow but I don't think my hospital offers reconstruction straight away. Good luck for the 26th x

All your tips have been noted and I'm off to buy earplugs 🙂
JoJo11
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Hi Emma ,
i would add lip salve and moisturiser, and a nice big serviette for eating at awkward angles. And I definitely endorse the earplugs!
Hope it all goes smoothly for you.
Jojo

Guest user
Not applicable

Re: Mastectomy on 17/4 - What are your words of wisdom?

My birthday too. I had tax 3 on that day, so not a great birthday for either of us. ANC is axillary node clearance.
Jo_BCC
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Posted on behalf of new user tricia - Jo, Facilitator

I had my MX 17TH DEC (my birthday) my second op, first was wide local incision unfortunatly they found further sites in the breast hence mx. what is anc??.

Wendy56
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Hi I am having bi-lateral mx on 25 April possible immediate recon on at least one side. I go Weds to discuss with surgeon. Thanks everyone for the replies some really useful info

Wendy
GIJaneH
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Would definitely recommend the vests over the genie bras for the first few weeks... after that the genie bras are fab. I found that I was lopsided in them though... with the softie, my real boob hung low.. with the silicone falsie, that hung lower than my real boob! I bought myself a "been-a-boob" from Nicola Jane website, and I've not used anything else since! I am balanced, and it is light and comfortable and kind of "movable" like a real boob.

Yep, I think you can expect chemo in May... or June.... My op was in Feb '11 and I started chemo at very end of April. Once the op's over, and you are beginning to feel normal again, for me there was what seemed like a forever wait to see the oncologist and get a plan. It wasn't actually very long.. it just felt it!
The other thing which was a god-send, was the Caring Bridge website. I don't know about you, but the phone kept gong with well meaning people wishing me well, wanting to know how appointments went etc etc. Caring Bridge is a special website for such situations. It's easy to set upa page, and you can post as much or as little as you want, and people can keep in touch without disturbing you. They can also leave you a message. You can change the privacy settings to what sort of level of security you want, and I found it brilliant. My friends also appreciated it. It turned out to be good to look back on it afterwards, and a year later...
Hope all goes well... God bless
Jane

Ali_H
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Hi Emma! Good luck Hun, there's some brilliant advice here, especially the ear plugs! I was on a ward of about 8 ladies, one had dementia and called out all night for help. I really felt for the poor lady but I also needed to sleep off the anaesthetic. My hospital advised just taking the barest minimum in with you on admission, and getting your first visitor to bring everything else (because I went to a reception office, then to theatre, and my things were put in a placcy bag for me and taken to the ward later) so that way I wasn't stressing about losing stuff on top of stressing about the op.
Id stayed in that hospital before so I knew it was warm and the food was awful, my oh brought me a tuna cob in to eat that evening, delicious!
Melrose15
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Thank you ladies. I feel you support and its feels good not to be alone.
Looks like i need to go shopping! I have bought a pack of genie bras from bhs as i had read they were good. Cant say they're attractive though. Just need some button down tops and comfy bottoms. And wet wipes are a brilliant idea.Oh and some pillowspillows! 53
Thanks for the info about cording. Sounds quite uncomfortable so will definitely do the exercises. Also its interesting that some of you say you stayed in longer after the op. I think i'll play that by ear but its good to know its ok to stay longer. The drains sound like the main pain!
I will have chemo after so i presume that will be May time? How long after did you start yours? My next appointment is Thursday so i'll find out more then. All i know is i have two tumors in different quadrants that have massed to one 93mm tumor. Also i have affected lymph node (first lump i found). Hence Anc i presume.
Pat- I am at Barnet North west London. Will definately message you. Seems like youve been through a lot already. Good luck with the mx xx
Catzoo- sounds like you're doing great Hope it continues. Do you know if youre having chemo and if so when?
Much love to all
Emma x
GIJaneH
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Hi - i replied last night, but it's got lost! I had my mx 2 years ago. I echo a lot of the above - I bought myself a bright zip up micro-fleece jacket that I lived in for a while. Something new makes you smile. In my trust,we didn't get given a bra, but my daughter took a day off and we had a girly day out shopping for one just before surgery - her idea, and very helpful/thoughtful. The best thing I found for afterwards was the softie in a sports vest, or one of those vests with built-in booby bit. Rather depents on your size I suspect, but as a middling person, it worked well and was more comfortable than a proper bra. Top tip for hospital - ear plugs (most hospitals won't have single room facilities I think) and ear plugs help you sleep - as does taking the strongest pain killer on offer before bed (even if you're not in agony!) I didn't find it too painful, or much of a problem. My drain came out day 2, and I came home... no seroma... no nothing. Do the exercises faithfully, but gently. Don't put your arm above your head for the first week, even if you can. There is a little evidence now that pushing it too soon can cause lymphoedeme... but you DO need to do the exercises gently and regularly... it soon comes back...

What other treatment are you facing? You might find it good to join a thread of "April girls" and travel together..
Go well... you can do this....
Jane

pat_1949
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Hi there,
I too am having MX on 18th April so maybe we can compare notes, my journey started in January with a WLE I have now had 2 ops and will end up having MX anyway. I am worried about how I will be after the op and have no idea what is in front of me. I have been reading the posts on this website since my first op, so I have seen the good and bad. I think we have to just take it how it comes, I have had excellent care at my hospital for my other ops so hopefully this will continue. Where abouts are you? I am in Essex (Chelmsford). You can private message me if you like, it would be good to be in touch with someone in the same boat.
Will be thinking of you on the 17th.
Pat Xxxx
Elsa
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Hi Emma- I had my mx just over a year ago and was in hospital for 2 nights in a 6 bedded ward. The other ladies were lovely, two of them had been through BC themselves so were very understanding.
I would advise taking a button through nightie, nothing that goes over your head, some pj bottoms and dressing gown too. Also, a book to read maybe an ipod or mp3. Television wasn't free to watch where I was so its good to have something else to keep you occupied. I started writing a diary and though a painful read I can now look back and see how far I've come since the op.
After your op if you need it, ask for stronger pain relief to help you through the first 24 hours; they gave me paracetamol at first but it just wasn't enough and I eventually had to have one dose of liquid morphine and that was enough.
Like the others have said, baby wipes are a great idea for freshening up. I would also advise taking in some food or snacks as the hospital food was just tasteless; I remember coming home and craving a simple but tasty meal and my OH made me some scrambled egg on hot buttery toast and it might as well have been a michelin starred meal in my eyes!
The post op exercises are vital to get back movement in your arm and shooulder, I was quite shocked at how much movement I'd lost but within a few weeks I was fine. No-one prepared me that I might get a seroma (or two!) after the op, this is a collection of fluid under the wound site; it is easily drained off and may take a few goes to resolve it, your body also reabsorbs the fluid over time
Hope your op goes well
Jane x

catzooo
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

I had Mx And ANC a week ago. Very stiff and sore still. You need button up front PJ'S. and loose trousers. I was very cold and wore woolly hat and dressing gown in bed.
I was given a cotton shoulder bag for the drain. Algo fitted for and given a post surgery bra and softee fake boob.
I week later I still got the drain in. But it's coming out tomorrow. I stayed in 2 nights. Was asked if I was ok to go home with the drain in, emptying it etc. I could have stayed all week if I wanted to til the drain was out.
Got to say it has been nowhere near as painful as I expected.
scone
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Hi Emma
I found it really helpful at night when trying to sleep to put a pillow in between mastectomy breast side and arm, it just made sleeping a bit more comfortable.
It might be useful for the first time post op you shower to get a nurse to help you I remember being a bit awkward about showering with my drain and drain shoulder bag.

Good luck

Jude
x

Guest user
Not applicable

Re: Mastectomy on 17/4 - What are your words of wisdom?

If you're being treated on the NHS it's worth finding out if you will have a room of your own. It is standard practice in the NHS hospital where I was treated to give mastectomy patients an individual room. It made a HUGE difference to my psychological recovery to be given this so I really hope you'll able to have this arrangement too.

And don't bow to pressure to leave hospital before you're ready. They tried to ship me out with drains still in and I was very uncomfortable with this (as I'd never had drains in before) but I insisted on staying in until the drains were removed.

All the very best.
tommyticklemou
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

first of all love and best wishes for your op.
like others have said button front nightshirt or pj's. i also went in a loose button down shirt for when i got dressed to come home.
its likely you will come home with drain still in, i got a little cloth bag from hospital to carry it in, so you could ask if they have them, just makes it a bit more pleasant/easier when your carrying it around everywhere with you or take something with you.

TTM xxx

Guest user
Not applicable

Re: Mastectomy on 17/4 - What are your words of wisdom?

Cording is also known as axillary web syndrome. It looks as though you have a rope, or string running from your armpit down your arm. Some people get it right down into their fingers, but others don't have it quite so badly. I had my chemo first, and one of the threads on this site says that is more likely tomake you end up with cording. Some people are lucky enough to avoid it altogether. With luck, you will be one of them.

The cording makes it more difficult to stretch out your arm and restricts the movement in your arm and shoulder. If you react by stretching the arm less (because it hurts), you could end up with a frozen shoulder - so it's something to watch out for.

From what I have read, it is because your lymph nodes have been removed so the body can't use the lymphatic channels (which are like an alternative venous system, but for lymphatic fluid) in your arm any more so they shrivel or scar. I'm not sure which. On some places, I have read that this is a self limiting condition and will clear up on its own within three months. Elsewhere, I've read that it can go on for years without help. Some people suggest a physical therapist can snap them, which gives immediate relief and increased movement. I don't fancy that, though. I'm hoping to clear mine with massage and stretching.
nanniereeree
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

My hospital was warm enough and they have thermal blankets. I took food and drinks in with me but never used them as they provided enough as I was only in one night was still sleepy the next day so did not need to much drink.
defo open fronted shirts or nighties and wipes to freshen yourself up with
Marie
Nextstep
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

I would say baby wipes so you can freshen up even when you can't get out of bed and mints or sweets to suck as sometimes you can have a sore throat due to tube inserted for general anaesthetic. I didn't have either! Also button through nightie or pjamas - definitely not an over the head job! And make up to make you look human when you depart (if like me you look inhuman without).
If you are interested I did a diary of my experiences in the undergoing treatment:surgery thread but you may prefer to just see how it goes. We are all different!
Melrose15
Member

Re: Mastectomy on 17/4 - What are your words of wisdom?

Thanks Margaret
Can I ask what cording is?!
Emma x
Guest user
Not applicable

Re: Mastectomy on 17/4 - What are your words of wisdom?

Hi Emma,

my hospital was freezing. So glad I kept my coat (was wearing hat and gloves in bed too, and still cold). I imagine most hospitals would be too warm rather than too cold, but it might be worth your while checking and bring a fleece blanket in with you if necessary. Apart from that, I had my iPad, mobile phone and two books. It got very boring in hospital. And I wish I had brought food with me (I'm very fussy).

Everyone will tell you you need to keep doing the exercises. I found I had a full range of movement immediately after my mx and ANC, but developed cording after the first ten days or so. Am hoping I will regain arm movement if I persevere.

Oh, and you might want to bring a shoulder bag for the drains. Some hospitals provide them, but mine didn't.

good luck,

Margaret
Melrose15
Member

Mastectomy on 17/4 - What are your words of wisdom?

Hi All
I am having a mx and anc next month and I bow to your superior knowledge when I ask 'what got you through'.
I was wondering what your top tip is, what you couldn't have survived without or even just words of wisdom to prepare myself.
Thanks lovely ladies
Emma x