Saturday, 24 January 2015

Everything I've learned about... Mastectomy with LD Flap reconstruction

12 days ago I had a mastectomy with LD flap reconstruction. I thought it might be useful to others who will be having the same or similar surgery to make a note of some of the information I found out beforehand that was useful to me, and things that I discovered along the way!

The exact details of my surgery
I had a skin sparing mastectomy of my left breast (but lost the nipple - the cancer was right beneath it) and full axillary node clearance, with immediate reconstruction using LD Flap (Latissimus Dorsi) and an expander implant. This post is probably most useful to anyone having a skin sparing mastectomy with immediate LD Flap recon - whether or not you're having lymph nodes removed, and whether or not you are having an expander implant too (and probably whether or not you are keeping your nipple). But many bits of it might be useful to anyone having any kind of mastectomy or breast reconstruction.

Useful things to know in advance!

Don't worry
The first thing to know is, my personal experience of surgery was really good. Far less scary and painful than I imagined! I wrote about surgery and my time in hospital here. Have a read if you are anxious - hopefully it might help to put your mind at rest a bit.

My experience has been it's honestly not that bad. I imagined it to be horrendous. I thought I'd be in agony and unable to move, for at least a week. Not the case! I've been regularly taking painkillers, and they've been doing a great job. In hospital that was paracetamol, ibuprofen and codeine with occasional tramadol, and at home I am taking paracetamol, ibuprofen and occasional tramadol. For the first 16 hours or so after surgery I was hooked up to morphine on an IV - which meant I could get a little hit of morphine whenever I pressed the button they gave me. I say "whenever" - you can press it as much as you like but I think it only lets you actually have some every 5 minutes. I pressed the button 17 times and several of those were in the recovery room in the hour immediately after surgery when they kept encouraging me to! I just didn't really need it. (Partly I think because they give you some local anaesthetics just before you come round from surgery which numbs the area for a number of hours afterwards.)
The kind of pain I have had is mostly soreness. For the first 5 or 6 days a lot of the area under my arm and at the side of my chest was actually quite numb (On day 4 when the nurse removed one of my drains I couldn't even feel her touching my skin). Over the last few days the sensation has been coming back, and with that some additional soreness, but it's nothing terrible.
I had occasions with very sharp and intense pain in my back as a result of my back drain (more on that below) but these were very short, sharp bursts of pain where I think the drain may have been hitting a nerve. Not nice but only lasted a few seconds.

The underneath of the top half of my arm is sore to the touch - I asked my surgeon about it. It's because a main nerve that goes into your arm gets knocked about a bit during surgery (unavoidable). This will heal after time. (My friend Heather who has had this surgery said it lasted about a month. It's nothing unbearable, just a bit sore to touch.)
And then I have had random instances of sharp or shooting kinds of pains, and some aches - but again, nothing unbearable.
Overall, considering the surgery I have had, the pain has been far less than I ever expected it to be. Don't worry about pain!

Oh! PS - this is not pain but a strange feeling. You can feel after about a week like you are carrying a book under your arm. It's a strange feeling and hard to describe but once you get it you'll know what I mean. That's normal - something to do with a rearranged tendon and it goes away in time.

It's early days for me - I'm only day 12 post surgery, so I've only had one brief look at wounds before dressings have been put back on. But what I saw blew my mind! So neat!
Because I needed to lose my nipple, the surgeon cut around the areola and removed that section. So I will have a circular scar there. What he cut out has been replaced with skin from my back (attached underneath to blood vessels under my armpit, to keep it alive. Very clever stuff). It's looking pretty good! The skin from my back almost matches the skin from my front, so I expect a very neat scar, and can have a 3D nipple tattooed in the circle. It will never be quite the same as it was before, but honestly, it's pretty amazing. I've been taking any opportunity to whip it out and show my friends and they're all suitably impressed and amazed!
I also have a line scar in my armpit, around 5cm long I think  - this was needed for the axillary node clearance. If I didn't have lymph nodes removed I'm not sure whether the surgeon would have needed to go in here and whether there would be a scar at all.
And on my back I have a line scar which almost (not quite) follows where the back of my bra goes across my back (where the surgeon went in to access the latissimus dorsi muscle on my back, and where skin was taken to replace the nipple/areola area of my breast). This scar is about 15cm long.
As I said, it all looks incredibly neat. I don't feel upset about the wounds/scars in any way.
I also had 3 drains in (I'll come on to drains next) - one in my armpit, one at the side of my left breast and one in my back (at the side of my back). The tubes for drains are small, but I guess they might leave small scars (maybe like a chicken pox scar).

One thing a lot of people worry about, myself included, is having drains in. It's really not that bad! The drains are bottles that are attached to tubes that go into your body. You're likely to have them in for between 5-7 days. They are held in place by stitches (so you'd really need to tug very hard at them for them to have any chance of coming out). It's not pretty but for the sake of information, here's a photo of two of mine, fluid and all! (Ew!)

Don't worry when you start to see lumps in them too! Gross! But completely normal!

The drains generally didn't cause me any pain or discomfort, apart from sometimes the one in my back would shift a bit and that would HURT! But, I discovered that getting up and moving around fixed it, I guess it would readjust position, and pain would disappear again.

They go everywhere with you (obviously) so you need a bag to carry them in. My hospital provided bags for them. Here's a picture of me (looking very much like a cancer patient which I hate!) with my drain bags - you can't see properly but I needed two bags for three drain bottles.
If you're getting your own bag for your drains I would recommend getting something fairly small but which has a long enough handle that you can put it over your shoulder and across your body ideally. I also found the long handle made it easier to pick up - I could hook it over the side of my bed meaning I didn't need to bend down so much to reach and pick it up - very difficult to do in the first few days. I had to press the button to call for a nurse numerous times just to pass me the handles of my drain bags when they'd dropped to the floor!
Sitting and lying comfortably
You know what? It's not that bad! In hospital I found the hospital bed to be really comfortable. It was all sorts of adjustable, and each day when the bed was remade I seemed to have a different assortment of pillows. But I think the standard number I used was 2-3. The main thing that annoyed me was not being able to sleep on my side for a few days. (Sleeping on my back was fine, it didn't hurt my back wound at all, it's just that I'm normally a side sleeper).
One day I managed to roll on to my right side, but couldn't roll back again. My orange "Help!" button was behind me and I couldn't reach it. The Ward reception desk was right by my room but I was too embarrassed to call out. So I lay there for about an hour til I managed to roll over on to my back, at which point a nurse came in about lunch, and I started to cry, haha! Other than that though, I had no bed/pillow related issues.
Before I went in to hospital I had prepared my bed at home with every kind of pillow and cushioning I could think of. I had a wall of normal pillows at the back, a V pillow in the middle, and cushions to the side. I had been imagining myself needing to be propped very carefully all around by the softest stuff possible. By the time I was back home (day 5) I was lying on my back with my usual one pillow, sometimes venturing on to my right (non-surgery) side with my usual one pillow under my head and a heart cushion under my surgery arm (more on the heart cushion below). It's now 12 days after surgery and I can almost lie on my non surgery side although I'm avoiding it as much as possible. (I just miss it! It's my preferred side to sleep on!)

The heart cushion!
My friend Heather who had LD Flap recon recently gave me this heart cushion. She got it from the hospital where she had her operation. It wedges under your arm (the side you had surgery). I didn't use it in hospital and started to wonder why Heather had needed it - but with hindsight I realise that's because at that point that whole area was still pretty numb. As the feeling started to return, the pain went up a level. The heart cushion is brilliant for wedging under your arm when it's sore - not sure why but it really helps. It's also great for wedging under your arm when you want to lie on your other side - again not sure why but for me it just made it so much more comfortable and took away some pain. (I did a quick check and if you google something like "breast surgery heart cushion" you'll come up with various places selling them.) 

Clothes to wear
For a while after surgery you will have very restricted movement/use of your arm on the side where you had surgery. There are a couple of reasons for this. First of all, initially you just won't be able to move it much! It will be stiff, tight, sore. As that eases off, aside from careful exercises and movements, you shouldn't be using it very much - this is because you need to allow everything to heal and settle inside. That section of the inside of your body has been rearranged! It's held together internally all over the place by stitches. You need to be careful for a while, to allow the tissues to re-knit together in their new homes.
So plan on spending several weeks wearing tops that button up or zip up. You won't be pulling any t-shirts over your head in the early days! Button up PJs/nightshirts, button up shirts/cardigans, zip up hoodies. And possibly vest tops that you can step in to and pull up, rather than put over your head.
You don't need to get anything particularly oversize, as long as clothes aren't skin tight there will be enough room in them for dressings and drains - they really don't add much bulk at all. (I bought several things a size large and didn't need to.)
Hospitals tend to be pretty warm, so try and take pjs/nightshirts that are fairly thin and maybe some short sleeve options, rather than anything of a cosy, fleecy variety. (Especially if, like me, you are still getting chemo-induced hot flushes. I spent half my time in hospital hugging my chillow pillow!)
And don't worry about your clothes getting covered in blood and bodily fluids. I was convinced that with that amount of surgery my clothes would inevitably end up with gross stuff on them, that I'd be leaking and oozing all over the place. Not at all. (Literally, not at all.)
Oh and the big question.... what knickers do you wear for surgery? It probably doesn't matter! Due to the length of surgery they're likely to put a catheter in so you'll either be given paper hospital pants to wear, or whatever you are wearing will be taken off and given back to you after surgery in a little plastic bag! If in doubt, go with plain cotton ones!

I was told to get a non-wired, front fastening sports bra. The only non-wired front fastening sports bras I could find were proper sporty sports bras, high impact, restrictive (not quite gentle enough for immediately after an op). So on advice from the woman in M&S I got a 2 pack non-wired, medium impact sports bra which fastened at the back (with 3 widths) like a normal bra. These have done me just fine. (Image below is of what I bought, not just a random bra model!)

The first couple of days I didn't need to wear it, then the next few days in hospital I had the nurse help with doing it up/undoing it when they needed to do wound checks or I needed to wash. And then when you're home and have drains in you can either get someone to help you with it, or if there's no one to help, just pull it down to wash then pull it back up again - you'll be back in the hospital 2 or 3 days later for wound checks and dressing changes so can get help from a nurse again then. And once your drains are out it's easy to do it up at the front and then twizzle it round.
You have to wear it all the time (ALL the time) for weeks and weeks. To help support all that rearranged tissue while it knits back together in its new home. But the ones I bought have been comfy (I think cos they're non-wired).
Don't be fooled by things labelled "post-surgery bras". They aren't for supporting you immediately after surgery. They're the ones that have pockets for prostheses if you've had a mastectomy and no reconstruction.

You need to keep the wounds and dressings completely dry after surgery, so you can't shower. I'm currently day 12 after my operation and I think the dressings are coming off for good on day 19. I think it's then that I can have a shower. So be prepared to stand in front of a sink and wash with a flannel for 2-3 weeks. I also took baby wipes in to the hospital, although didn't really use them much as I was mobile and well enough to wash in front of the sink in the bathroom. I didn't bother washing my hair when I was in hospital (just kept the headscarf on) but I have been fine washing it in the sink myself since I got home.

Things to take in to hospital

I can't guarantee that I haven't forgotten anything! But here are some of the things I found it useful to have in hospital.

The obvious:
  • Toothbrush and toothpaste
  • Flannel
  • Shower gel/body wash
  • Facewash
  • If you use it, moisturiser
  • Handcream
  • Hairbrush (if you've not lost all your hair to chemo)
  • Knickers
  • If you wear them, glasses and case
  • Any medications you take
  • Phone and charger

The obvious but with notes:
  • Pyjamas or nightshirts. Make sure they are button up so can be put on and easily unbuttoned by nurses who will be doing regular wound checks. Also I'd recommend fairly thin/light material. Hospitals are warm!
  • Something else to wear if you want an alternative to sleepwear, eg button up shirt/t-shirt and a pair of joggers - make sure it's nothing you need to pull over your head.
  • Shampoo (suggest taking dry shampoo instead for the time in hospital)
  • Socks or bed socks (although you might not need them - not only are hospitals warm but you'll have those attractive knee high, white, preventing-DVT socks on too)
  • Slippers (ones you can easily get on your feet without needing to bend down in any way)
  • A book or two to read if you like to read (but no need to take in five like I did - I was sure I'd be bored and going stir crazy in a hospital bed for that many days but most of my time was taken up with sleeping, eating, visitors, observations/wound checks, and washing)
  • Small purse with a small amount of cash (I left my main purse and bank cards at home)

The less obvious:
  • Lip balm (you'll have dry lips after general anaesthetic)
  • Small pack of boiled sweets (you'll have a dry mouth and possibly a bit of a sore throat after general anaesthetic. They really help.)
  • Earphones or headphones (if you plan on listening to your own music or watching TV in the hospital)
  • Earplugs (I didn't need these this time as I had my own room - but if you are going to be in a bay on a Ward apparently they are a must)
  • Eyemask (again, I didn't need it this time as I had my own room so could control the lighting in the room myself, but if you're in a bay on a Ward this will help you sleep)
  • A light bag with long straps for your drains (eg canvas shopping bag. But it might be worth checking first with your hospital if they will give you any specially made drain bags)
  • A compact mirror (handy for if you don't want to get out of bed to go to the bathroom mirror)
  • Chillow pillow (are you getting hot flushes because of chemo? If so and you haven't got one, I recommend! Shop around online. And if you have got one, definitely take it in with you.)

Care in the few weeks after surgery

I live alone so I arranged to have my friends take it in turns to come and stay and help me out. You need help for two main reasons:
  1. In the early days there's a lot you can't do. You're likely to go home with a drain or two attached to you which restricts mobility. And you basically need to rest as much as possible and not use the surgery side arm for anything much at all. No lifting a kettle with it! No opening heavy doors with it! No bending, reaching, or stretching in to awkward positions with it to get things/plug stuff in etc
  2. As you become more mobile and have less pain, you still shouldn't do much with that arm. Your external wounds heal more quickly than your internal wounds. You've had bits of you rearranged internally! Muscle has been moved from the back to the front of your body, it's been stitched up a lot inside, delicate work has been done to attach blood vessels. You need to rest and be gentle to allow all that to heal and for the tissues to knit together in their new homes. Do too much and you risk damaging the very careful work the surgeon has done inside.
This is what I have in place and it's working very well for me!
  • Days 1-5: I was in hospital.
  • Days 6-14: I have had a rota of friends staying with me, doing pretty much everything for me. They're cooking and washing up, sorting out my washing, doing my shopping, hoovering, making me cups of tea, occasionally taking me to the hospital for check ups and so on! I've gushed about my friends lots in this blog already because they are amazing, I already knew that, but there's some of them that I now owe big time! I feel guilty, sitting on my sofa, while someone else does all this for me. But I need to be careful and let the surgery heal. And so far, so good.
  • Days 15-22: I've got friends stopping by around lunchtime and teatime, to do cooking and washing up, and odd jobs like clothes washing. I'll be ok in between times to sort breakfast, make cups of tea etc.
  • After that - I'll see how I am. I expect to be fine with cooking and washing up and clothes washing, I will need to ask for occasional help over the next few weeks with heavier housework (or just not do it).

Beyond Week 2!

An update from me 4 weeks after surgery....
I'm still off work and at home but I can do a lot more for myself now, as long as I'm careful. I'm still avoiding lifting anything heavy - I notice it feels wrong if I try (for example I tried to lift a carrier bag with 12 small tins of dog food in it yesterday - I just put it straight down again as I could feel the strain!). I can cook and wash up as long as I avoid any big or heavy pans.
The dressings all came off after three weeks so I can bath and shower - it feels great! I'm using Sanex Zero as it has no perfume or anything like that. And I'm now covering myself in e45 cream as often as I can where the surgery was - ready for radiotherapy.
I did stop taking painkillers after the first couple of weeks but my surgeon has told me to keep taking them for a while as I'm still sore especially with certain kinds of movement (eg leaning/bending down, walking out and about). And I'm VERY tired! I am sleeping A LOT. I was a bit worried about this ("do I have post cancer fatigue? eurgh that's the last thing I want!") til my surgeon lectured me about how young people are always too impatient with recovery from surgery. He reminded me it's major surgery - my body is used to being fit and healthy, not dealing with such a large amount of healing - the external wounds are the tip of the iceberg, there's a lot of healing taking place inside right now. Plus I had chemo before. He said give myself a break, take the painkillers and rest for some more weeks. He said it won't feel completely "normal" for 4-5 months.
The wounds are now scars and they look great - they've healed really well and are very neat. I'm happy!
I'm still in button up clothes, and I'm still taking up offers of help with shopping, cooking and cleaning from my friends, and I'm resting as much as I can.... but I feel like I'm getting a bit better every day. I hope it continues and I'm back to normal life soon!


If you have any questions please leave a comment below and I will respond as soon as I can

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