Looking for suggestions after double Mastectomy

Hi Meldarbs​ , so sorry you have had to join this club. It's not where any of us hope to be, but I agree, this site and forum have been wonderfully informative and supportive. I had a unilateral mastectomy 3 weeks ago and a lumpectomy at the same time on the other breast. The resources Mez and Arpie have shared are fantastic and were really helpful for me in preparing. 

Here's a few comments l thought I'd share following my own recent experience:

• find a smallish (narrow) drink bottle with straw - this was great for in hospital and the first week at home - small to hold, didn't have to tip it up so easier to drink from than a bigger bottle and was something I had beside me all the time
• the breast pillow was provided by Zonta for me, check with your breast care nurse about who provides them where  you are - this has been a great thing to have on my mastectomy side
• if you haven't already connected with a Breast Care Nurse, it's a great idea to do that ASAP - they are truly wonderful! Ask them all the crazy questions, they are happy to talk through things and provide reassurance and advice
• you'll likely come home with a drain tube on each side, I had one and the district nurse came each day to check in and empty the collection vessel; the hospital gave me a calico bag with a long handle to pop it into when I was walking around (which I carried around like a cross body bag), so if they don't provide one it's worth having something for it to sit in rather than having to carry it in your hand
• this might sound obvious, but for the first couple of days I left the drain thingy in the bag beside me in bed or when on the couch, but realised it wasn't draining from the tube into the vessel very well. So I started making sure it was below me (in a basket on the ground) so it drained better. Mine got removed on day 6 but it depends on the requirements of your surgeon (my surgeon's instructions were when the output was <40ml/24 hours two days in a row)
• my surgeon suggested a specific post-surgery bra which I had to purchase prior (she put it on me in theatre before I woke up!) - the Amoena Pamela bra. It's been really good and provides nice compression on both the flat side and my remaining breast. I've got the Berlei bra that you'll also get, but haven't used it yet but I anticipate this will be good when I start getting out and about a bit more, but this might not be as useful to you immediately after the DM (it will be good when you are ready to get out and about and if you want to put the soft inserts in)- talk to your surgeon about a compression bra and whether they recommend one (although of course this depends on whether you are having immediate reco?)
• I had some short sleeved PJs that button up the front in hospital and long sleeved ones at home - really important as it makes it much easier to change into and out of them. The first week or so at home I wore flannelette shirts during the day for the same reason, and they were cosy (given it's winter); also loose long pants that are easy to pull up and down; and a large warm cardi or large loose warm jacket; soft fluffy socks that are really easy to pull on and slippers that you can slide your feet into
• I slept in our spare bed (still am!) when I came home, as I tended to be a bit fidgety and could throw blankets on and off through the night as I needed to regulate my temperature and not disturb hubby; for the first week I had to sleep on my back propped up on some pillows. About 2 weeks in I was able to sleep flat on my normal pillow but sometimes would prop myself back up during the night. 3 weeks in I'm flat on my normal pillow, but mostly still on my back as I find side sleeping still a bit too uncomfortable
• I was waking every few hours at night at home, so be prepared for that too - I was also napping on the couch during the day which is very unusual for me! I was really tired that first week and on days I felt really good I sometimes did too much, paid the price that night or the next day feeling a bit sore and tired. Walking around is really important and I enjoyed going outside and walking around the paddock very slowly on nice sunny days...otherwise I did laps around the kitchen! Just keep them short
• take the pain meds! If I was feeling ok I didn't take them sometimes and regretted it later. I'm now taking ibuprofen or paracetamol as required, but generally every six hours during the day until bed time. I was taking some during the night (typically 3am ish) but now don't need to, so it does start to reduce
• don't be afraid to tell people you are not ready for them to visit - it's really draining having visitors; my hubby was able to screen calls and manage this in the first week (which he found draining too!); so if you have someone to help with this that's great, if you don't just be up front with people and only have one visitor per day and tell them what time you want them - I found mornings best
• I was lucky having my hubby at home from work for the first two weeks, so I really didn't have to lift a finger. If you don't have that luxury, take up offers of food drops for as many meals as possible. Or cook some and freeze them in advance - you won't be able to (and you likely won't want to!) meal prep for at least a couple of weeks

I hope this helps a little bit. Although there were some great convos and info on this site, you just don't know how you are going feel day by day until you're in it and I was always wondering if how I was feeling was 'normal'. I was still quite tender everywhere two weeks afterwards, and now it's mostly just tenderness along the scar and under the arm. I still feel a bit emotional and drained occasionally, but 3 weeks later I'm starting to feel a bit more positive and brighter. There's a bit of swelling under my armpit on the mastectomy side (they only took 2 lymph nodes) and it's a bit tight, so I haven't managed to get my arm fully above my head yet. But I'm gently following the Strengthen Your Recovery Pilates program (which you can find on this site), just within my current range. The surgeon said not to push too hard, so I'm trying to take it easy!

I started back at work this week (working from home) and I'm doing shorter days - just taking breaks regularly and resting if I need, as I'm finding it a bit tiring.

all the best with your surgery and the next steps, take care x

Hi Meldarbs​ 

I am so Sorry to see you join the club that no-one every thought they'd be joining 🙁.   xx  

You've found the right spot here tho, for support & info from those who've 'been there, done that'! So hopefully we'll be able to help smooth the way for you from here on.

With all your appointments in coming weeks, specially after your surgery, consider recording your sessions on your phone, so you can go over it again later, as it can be difficult to remember everything that is discussed.   And also, take a trusted friend or family member with you both for support and an extra set of ears.

Mine was ILC (Invasive Lobular Cancer) - I was lucky to only have the one lumpectomy, rads & tablets .... and have recently finished the tabs after 7 years!

Are you planning on having reconstructive surgery or will you remain 'flat'?We have private groups for both those having reconstruction or remaining flat - so feel free to join them, if you'd like to ask specific questions xx  I believe, that if NOT having reconstruction, recovery would normally be quicker & easier - but it is best to ask those who've had it done. 😉 

You may be helped with a 'u shaped' cushion that supports your arms, post surgery.  I had a small long flat cushion that I used for my one arm .... as it really didn't like lying flat on the bed for ages!  Sometimes, the Breast Care Nurse can organised them for you, as you'd probably need 2!

Have you been assigned a Breast Care Nurse yet?  Put your Postcode in here & you'll be shown those that are available, closest to you.  Give them a bell.
https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/

Whack up ANY questions here - remember there are NO dumb questions!!! This diagnosis can really muck with your brain too - so if you feel sad, angry, distressed at any time .... ask your GP (or your treating team) for a referral to see a counsellor .... or give the team a call here on the Helpline on 1800 500 258 (Mon-Fri 9-5) for a confidential chat.

You could also listen to Charlotte Tottman's podcast (link below). 
She is a BC specialist counsellor who was diagnosed herself, and she also had a double mastectomy, choosing to remain flat - so knows EXACTLY what you'll be going thru, both emotionally and physically!  Her own reaction to her diagnosis was also quite different to what she 'thought' it might be, given that she'd been counseling women's reactions for some years before, so thought she 'new' what to expect!  She is VERY easy to listen to, too xx
http://www.drcharlottetottman.com.au/my-podcast.html. 

Raelene Boyle's video is also well worth watching - what a star! 
https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/

There is also HEAPS of info in the link below to help you navigate the blog, decide what to take to hospital with you and also some tools to evaluate your own physical and mental recovery thru your ongoing treatment! xx.
https://onlinenetwork.bcna.org.au/discussions/general-discussion/a-big-welcome-to-all-new-online-network-members-/222737

Take care & wishing you all the best xx

Meldarbs​  Thankyou for starting the conversation. While we wait for others to share their own experience, we thought you may find these resources useful:

- Your hospital stay for breast cancer surgery
- Mastectomy surgery

Your breast care nurse might provide you with a cushion as well. In some places, local organisations such as the Country Women’s Association (CWA) make cushions. 

BCNA also provide a free My Care Kit, which you can order through our Helpline 1800 500 258. The kit includes a specially designed Berlei bra and soft form(s), provided through our partnership with Berlei. The bra is suitable for the post-surgery period of up to 12 weeks and can also be worn during radiation treatment.