Member
Posts: 2
Registered: ‎18-04-2017

Re: What to take into hospital?

I had a left skin sparing mx with full DIEP flap reconstruction on 24 March.  11 hours in surgery, which thankfuly I knew nothing about but my poor family ....  I have made an amazing recovery considering how big an op it was.  I'm 58 and was in good health before - didn't feel ill at all - isn't that the hardest thing to get your head round?

 

I used my PCA for about 18 hours immediately after surgery but after that I was fine on paracetamol and codeine and then just paracetamol.  I was uncomfortable rather than in pain.  I succombed to oromorph one night to help me sleep but it made me feel pretty woozy so I stayed away from it after that.  Make sure they give you senna or another gentle laxative as you do not want to be straining those stitches!

 

I had to have a blood transfusion about 24 hours after surgery as my haemoglobin levels were low but did feel much perkier afterwards.  Said little prayers of thanks to the donor who shared their A+ blood with me.  I can't donate unfortunately due to an infection I had as a child

 

The most unpleasant thing for me post op was the hot room for the first 5 days after surgery - and it really was hot - someone said about 35 degrees C!!!!  Not allowed to have the window or door open so I just lay there in a fug waiting for the days to go past.  Best things to have were a small electric fan and a "Stay Cool Ice Towel".   I found it on Amazon - it's a cloth designed for sports men and women which comes in a small clear flask.  You wet it, shake it for 5-10 seconds and it gets very cold and stays that way for up to two hours - a lifesaver!  Link here https://www.amazon.co.uk/gp/product/B00UXED5NC/ref=oh_aui_detailpage_o04_s00?ie=UTF8&psc=1

 

It's very true that having clothing that does up at the front is helpful as every clinician who comes into your room wants to look at your boob - nearly got mine out for the cleaner one day!Smiley Very Happy

 

 

Make sure you drink lots too. The hospital food was OK but I had little appetite and lost 8lbs in that week - though obviously some of that is on a petrie dish in pathology.

 

I found that once I started moving around the binder provided good support and I was so much comfortable once I was able to get into a bra.  Recommend you do that as soon as you can.  I'm quite large breasted, so having some support made things much more comfortable - I have a couple of Anita Extreme Support sports bras.  I needed extensions to begin with but these are no longer necessary during the day as the swelling has gone down a lot.  I still treat myself to a few extra centimetres extension at night for comfort.  

 

Amazingly after seven days all the drains were out, I could stand upright and even walk up and down stairs, albeit sideways to begin with!  So they let me home - yeah!  I went back a week after discharge for the main dressings to be removed and came out of that appointment with just a bit of micropore tape across my amazingly flat tummy and no dressings on the breast at all.  I'm on minimal pain relief - just 2 x paracetamol morning and night.

 

I'm due for a further follow up at 4 weeks later this week.  The breast is still a bit 'firm' and tender but the scarring will be much less obvious than I feared - I can look in the mirror now without wincing!  I never thought I would recover this quickly.  Roll on the new nipple next year!  

 

I do hate the binder though - the most uncomfortable thing ever invented!  They should make all plastic surgeons wear them 24/7 for a month and I bet within a few months someone would have designed something more comfortable!  I am planning a ritual incineration for mine when they tell me I can stop wearing it!

 

The bummer is that having thought I had DCIS and surgery would be a 'cure', it turns out I had two tiny invasive triple negative tumours and a positive SNLB, so I now have to go through 21 weeks of chemo during the long recovery period after reconstructive surgery, followed by radiotherapy and possibly more lymph node removal.  2017 is going to be a long year!  

 

Hope this has helped anyone facing the same or similar surgery any time soon.  I wouldn't say it was easy but it could have been a whole lot worse and I am hopeful that in the end it will prove to be well worth it.  Keep positive!

Member
Posts: 141
Registered: ‎01-05-2012

Re: What to take into hospital?

Im realising almost 5 years on from diagnosis and awaiting more surgery that its a new normal we have to move to not our old one. I have been hit pretty hard by all the chemo I had and need to find a way of being and liking the me that I am now. 

 

BTW, big knickers are the MOST important thing! I found a dry hair shampoo kept me feeling a bit more normal. Post surgery, if opiates make you queasy its worth thinking of things like lemony and gingery drinks and biscuits.

Member
Posts: 3
Registered: ‎09-01-2017

Re: What to take into hospital?

Hi Duffer56, I would be very interested to read your DIEP blog if you wouldn't mind sending it or re-posting a link here. I am due to go in for my contralateral mastectomy and reconstruction on 4th February, made all sorts of mistakes with the mastectomy bras before the first one which cost me a fortune! It would be good to learn from someone else's experience. Some good tips on here, but apart from a long op and long recovery, multiple drains and perhaps two weeks not being able to stand up straight, I don't really know what to expect.

I hope you're doing well now and coming out the other side. I just want my life back to normal again but I'm not sure if that is a realistic expectation once you've been through BC and double reconstruction. I'm sure everyone is different.


@Duffer56 wrote:

Hi, I did a 'sort of' blog when I had my DIEP surgery back in 2013 - a lot of it covering the Bridget Jones knickers I had to wear.

You are more than welcome to a copy if you want to pm me your email address


 

Member
Posts: 62
Registered: ‎01-05-2012

Re: What to take into hospital?

Thank you for sending me your blog, I'm seeing that things probably won't be straightforward and if they are straightforward to be very grateful!
I shall speak to someone on the ward tomorrow to see if Bridget Jones is to be present in my life, or at least her big knickers, I am feeling a little more worried as I had radiotherapy which caused huge problems for me after lumpectomy back at the start of my journey, 2 1/2 years of breast with a cavity that had to be packed daily by district nurse following 2 breast abcesses in operation site which was very happy to be the bane of my life, it took a new breast surgeon and a few ops to have it healed leaving the breast noticibly smaller and deformed.That was followed by numerous stem cell lipofil ops in an attempt to improve the size and look of the breast but didn't work so now here we are ready for mx and reconstruction surgery but hoping for a smoother ride through this and out the other side, but still needing at least 2 more ops, 1 to match the healthy breast and 2 to get a nipple on the reconstructed side!
Thank you for your replies to my query.

Best wishes, Bev xxx
Member
Posts: 62
Registered: ‎01-05-2012

Re: What to take into hospital?

Lol, just read my post again, blooming predictive texting, I really will need to proof read before posting anything else!!!
I hope it's decipherable, sorry for that!!!
Ps have proof read this post!
Member
Posts: 161
Registered: ‎29-03-2013

Re: What to take into hospital?

I have sent you a pm with my email address. If you send me an email I will reply to it and attach the 'blog'
Member
Posts: 62
Registered: ‎01-05-2012

Re: What to take into hospital?

Thank you for the information Nicola C, I will call the ward tomorrow and ask them probably best idea and I hate being uncomfortable and unprepared xxx
Member
Posts: 62
Registered: ‎01-05-2012

Re: What to take into hospital?

Thank you I would like to read about your Bridget Jones big knickers, how can I pm you my details and what's best for you? Xxx
Member
Posts: 10
Registered: ‎07-09-2016

Re: What to take into hospital?

Hi there, I think each hospital differs slightly, but I wore an abdominal elasticated band thing for the first 4 weeks, which the hospital provided. And now I am in control pants, the nurse said they shouldn't be too tight but enough to support.

i bought the recommended cotton bra which was hideous and not supportive enough for me. I had bought a front zip opening sports bra from Marks and Spencer and that has been marvellous. It is in their post surgery range. And I have also bought another M&S one, in the sumptuously soft range, also front zip opening and a sports bra. I think if your boobs are going to be fairly full it is good to have full cup coverage. Front opening s very useful for immediately post op as the doctors and nurses keep wanting to have a look to check and you won't be very mobile.

Good luck!

Member
Posts: 161
Registered: ‎29-03-2013

Re: What to take into hospital?

Hi, I did a 'sort of' blog when I had my DIEP surgery back in 2013 - a lot of it covering the Bridget Jones knickers I had to wear.

You are more than welcome to a copy if you want to pm me your email address

Member
Posts: 62
Registered: ‎01-05-2012

Re: What to take into hospital?

Can anyone tell me if you used some kind of support pants or abdominal support belt after the diep reconstruction?
Just had my pre op for mine on 2/12 asked but got distracted , and which bras you would recommend for postoperative period, she recommended sad post op bra in cotton, but it's back fastening and I've heard front fastening is easier, I'm going up a cup size, lucky me and will behaving further surgery to match the healthy breastbone the reconstruction later though I thought I was having this done at the same time, but hey how you know what thought done, the best thing today was finding out my bmi is 27 ( I lost 5 1/2 stone to get healthier, surgeon and ps said would get better results and nice loose tummy for the flap! )
I am excited but starting to get a bit worried, especially as they were matching me for transfusions and talking about hdu the first night and yes op usually around 7 hours but can be longer and longer in recovery too. I've had 13 operations since diagnosis in 2010 and this is my biggest op and will be longest stay, so have read all advice about what to pack but I can't drive as had a serious finger fracture which has been pinned and has external fixation on ,I get the pins out on the 29th 3 days before the op, I was due to have it 2 weeks ago then ps found out I had external fixation on the finger so put it back 3 weeks.
Any help on the support wear issue and suggestions on thebra issue greatly appreciated xxx
Member
Posts: 5
Registered: ‎11-11-2016

Re: What to take into hospital?

Hi Rosie14.  Thank you for the information - so useful.  I have got hold of a neck pillow today! Sorry to hear your implants failed.  That sounds uncomfortable! Good luck on 30th,  My surgery is on 7th Dec.

Best of luck!

Member
Posts: 5
Registered: ‎11-11-2016

Re: What to take into hospital?

Thank you NicolaC.  There really is a silver lining to every cloud - snoring relief!!  My husband will be delighted!  I appreciate your help.

Community Champion
Posts: 4,308
Registered: ‎02-02-2014

Re: What to take into hospital?

[ Edited ]

Hi honeybunch you have come to the right place to let off steam! This forum is a life saver! Here you will meet ladies experiencing the same thoughts and feelings as you. I have been a member of the forum since Feb 14 and linked up with the ladies in the April 14 chemo thread. Five of us still communicate through the forum and have met up twice! We now share much more than just cancer.
I am afraid you will have to sleep on your back for a while you won't be wanting to sleep on the side you have had surgery!🙀 I put a pillow in the middle of the bed to ensure my husband didn't roll into me! I think I left it for about 6 weeks. When I felt brave enough to try sleeping on a side - I had db mx- I used a beanie neck cushion, the sort you use for the plane and I found I could gently ease off my back. I kept this for several months and had to keep swapping sides ever time I turned! As you are not having reconstruction you will feel comfortable much more quickly! Initially I had tissue expanders and they had ports for inserting saline that felt like a large stone on each side!🙀
What is the date of you surgery?
I am having a DIEP on 30/11 as the implants failed!
Good luck and stay positive!

Member
Posts: 10
Registered: ‎07-09-2016

Re: What to take into hospital?

Hi Honeybunch, I love your your positive attitude and notebooks! I didn't go home with drains but had 4 in hospital and had them all dangling out one side of me in a pillow case so I am sure you could do the same at home. The physio or nurse will advise you about which side you can sleep on and whether you have to be propped up with pillows or not. I have had to swap sides with my partner temporarily- the upside is my snoring is better since I am sleeping propped up! But my surgery was more extensive than yours due to the reconstruction so you may be ok doing what you do now.

 

Good luck and take care!

 

Member
Posts: 5
Registered: ‎11-11-2016

Re: What to take into hospital?

Hi Everyone!  

 

This is my first time on the forum and I've been reading all the helpful hints - they are great!  I'm trying to get my head round being lopsided.  I am having a matstectomy. My surgery will be in 3 weeks.  No reconstruction.  I like to feel in control of my own life and your tips are helping me to feel I know a bit more about what is happening.  Thank you!

 

I have a beautiful little notebook for my questions and things I want to raise with the doctors and jot things down as I think of them.  I have another splendid notebook where I can dump my negative thoughts using brightly coloured gel pens - I decided I didn't want to overburden family or friends and make them feel down too as it helps me if they are positive. So writing down my feelings means I can park them and get on with life.

 

I have been told I will only stay in hospital one night and will be sent home with the drains in.  Can anyone tell me about sleeping arrangments while the drains are in?  I usually share a bed with my husband and tend to sleep on the side where the surgery will be.  

 

I love the virtual hugs!!

Member
Posts: 10
Registered: ‎07-09-2016

Re: What to take into hospital?

Hi Angeljo, it's a big op that's for sure- I was in theatre for 7 hours. But I was surprised at how quickly I started to feel human again- the nurses helped me get up into a chair the next day and I walked to the toilet the next day. The pain has been well controlled with paracetamol and ibuprofen. It is difficult to know what the end result will look like as my right boob, where I had the mastectomy and reconstruction is still bruised and swollen but it is certainly a boob which is great! I had a slight reduction and lift on the left side and that looks fab. My tummy feels very tight. I am feeling very tired but it's early days. Overall, it is a long and complex procedure and the recovery is 2-3 months but apparently the gold standard for reconstruction. Have you met any women who've had it done? I went to a breast recon awareness evening where women showed off what they'd had done and that was very helpful- great to talk to them and see their reconstructed boobs. It's entirely a personal choice and everyone recovers differently, but I am feeling well and positive about it all.
Member
Posts: 12
Registered: ‎01-05-2012

Re: What to take into hospital?

Hi nicola how was it and how are you ? Going to see the bc nurse mon to show me some pictures got my pre op I must admit I am very nervous and anxious . 😳X
Member
Posts: 10
Registered: ‎07-09-2016

Re: What to take into hospital?

Hi angeljo, I've just had the tummy fat flap for an immediate reconstruction- -I had a right mastectomy in the same op. That was 11th October and I came home on Monday 17th October, is there anything you want to know? Nicola x 

Member
Posts: 12
Registered: ‎01-05-2012

Re: What to take into hospital?

Hi this is what I've been offered or the back flap and implant . I was just reading your theard I swaying towards using my own body fat from tummy just wanted to see if anyone had had it . I have my op on the 31 st oct seeing my bc nurse mon to look at pictures and make my decision . It's so had in not sleeping as I'm worrying about which one to have and feeling very anxious 😬 .