62239members
327669posts
cancel
Showing results for 
Search instead for 
Did you mean: 

DIEP recovery queries

59 REPLIES 59
Member

Re: DIEP recovery queries

Quaggie-I'm also wondering if it's possible for your brother to come and stay with you, as opposed to the other way around? xxx

 

Member

Re: DIEP recovery queries

Hi Quaggie. I have read your posts on the surgery thread so I know you have already been through a lot. It does seem to drag on for some of us. I have a few more things to get through and it will be a long time untl it is all finished.

 

The best advise i can give is ask questions. Ask as many questions as you need from any source available. Make sure you get answers from the hospital and the surgeon for anything you are worried about as the more information you have the easier you can deal with it. Of course there are lots of lovely ladies on here to help but each person has a differerent experience and are told differerent things. We can help with how we felt and what happened to us but even if it feels like you are making a nusance of yourself, it is important to know what will happen and what support the health care system will give you.

 

All the best

x  

Member

Re: DIEP recovery queries

Hi Quaggie,

 

Welcome to the "upcoming DIEP" group, a group I'm sure you, like me, had never expected to be a member of! Smiley Happy. Yes, our living situations are similar. I agree with your friends in that we must think long-term as opposed to short-term. I have recently made the decision that I'd prefer to get it done in one fell swoop (my original plan but had been having second thoughts) because I don't know that I will want a second, so-called long op if I delay. There *are* agencies out there who hire out nurses or healthcare visitors, if your own GP practice can't arrange home support for you. What I've learned from my own surgeon is that NHS patients tend to be discharged sooner than private ones and so if you are having your op done on the NHS, you may want to ask your GP practice what type of support they will provide you at home. If you feel like you may need more support, you can hire a health visitor from a private agency. I know it's not ideal but it's what we single ladies with no friends/family nearby may have to do. I've actually asked my cleaner if she will take a few days off her other houses to be with me (I'll pay her)-I am just waiting for her to let me know. 

 

It's very hard for us to know how well we will be coping when we get home and can only go on others' experiences, but the reality is that some women don't cope well at all, and others are very able, so I'd suggest that you look back on any previous surgeries you've had (if you've had any)? and try and recall how you were. 

 

There is *a lot* of support on here so please don't feel you are alone.

xx

Member

Re: DIEP recovery queries

Hi all

 

I'm gate-crashing this thread as I'm at the planning stages for my single mx with DIEP reconstruction so I've found all your comments on here really helpful and will keep re-reading them when I'm nearer to my op.

 

A few people on here also recommended I come on here to talk to you Marla as I think we're in v similar situations.  Living alone without family or friends nearby.  I've been very anxious about this surgery as a result because I'm really worried about how to cope in the immediate aftermath of the op.  My immediate plan had been to go and stay with my brother for a couple of weeks but my surgeon and BCN weren't keen as they'd rather I was nearby for post-op checks and didn't think a 90 min drive after discharge was a good idea.  When they said this I had a bit of a meltdown and I was considering just having the mastectomy without recon as it felt easier and quicker.  But friends have talked me round from that I think, saying that I need to consider the long term and not just panic about the short term care that I'll need.  

 

But I'm still finding considering having this op, such a major surgery, very difficult and scary.  I've already had a WLE and then a re-excision op, and had been hoping I'd be finished active treatment by the end of the year, but that doesn't look like it's going to be the case now.  Dragging this out in 2019 isn't what I had planned!! 

 

Anyway, just wanted to post something rather than just stalking the thread! Wishing you all strength xx

Member

Re: DIEP recovery queries

Thanks Strawberry-that's really helpful! You have been incredibly helpful with all the tips for post-op. I honestly can't wait until I'm on the other side of this so that I can return the favour to someone! 

xxxx

Member

Re: DIEP recovery queries

Hi Marla

 

re buying bras- when you are recovering in hospital they will take regular doppler readings of the nipple area to check that the blood supply is OK, they do this very frequently at first. For this reason they normally ask you to wear a bra to protect the new breast but they cut a hole in the middle of the bra cup so thay can put the dopple scanner on it - for this reason its best not to spend too much on the bra to wear in hospital. I was advised to buy a bra that is a band size bigger but same cup size as normal.

 

Re control pants - during the operation the whole area of your abdomen from above your pubic bone  up to underneath your breasts is affected and I was advised that the control pants should go right up to where my bra started - I found that the Primark firm control pants were the best as they are reasonably priced, they have no seams and I was able to get them on. I tried some M&S control pants in my size in the shop and could not get them on - as this was before my operation I knew I would not be able to get them on after the operation! You can wear your own pants underneath the control pants, as control pants are not cotton.

 

All the best in your preparations.

 

Strawberry

x

 

 

Member

Re: DIEP recovery queries

Thanks UnicornGM: I'm so up and down at the moment it's unbelievable! On a + note-I bought the extra long phone charger (thank you)!, the bra extenders (thanks again)! and a new bra. Have returned I can't tell you how many bras cause they were the wrong sizeSmiley Happy. I also meant to say (this is edited)....thank you for the PM offer! 

xxxx

Member

Re: DIEP recovery queries

Big hug Marla 😘 The stage in between diagnosis & surgery is almost surreal. I remember being manic, cleaning windows & washing the cushion covers! Helped to keep me busy. Honestly, the bra extenders are great! If you want to pm be about anything I’m happy to answer any niggly questions xx
Member

Re: DIEP recovery queries

Thanks very much Christine for "normalising" my fear. I feel a bit better this AM and am hoping that a week at home with my parents (I live far from them) will do me good-am going home next week-end for a week. I don't think I have actually "processed" what is happening to me because all I seem to be doing is running here, and running there-either to medical appts or bra fittings, etc. And the only time I've had a good cry is in the shower-when it's just "me" and my body washSmiley Happy. I trust my team-that's not even the issue. They have a good rep. I suppose I am just hoping that somebody says "guess what-you don't need surgery". But I know I'm just being silly. Can I ask you: what surgery did you have? Did you have reconstruction? 

 

I haven't been advised what bra sizes to buy and fear that if I wait for them to advise me (pre-op appt) it will be too late to order on-line, etc. so I've been buying them all now but stupidly bought my current size-my plastic surgeon did say that my new boob will be a cup size bigger (he prefers to reduce later than to risk making it too small, so although I am normally a 34 dd I am now off to buy a few 36 e's cause one of the ladies on here suggested I get a band that is one size larger. It makes sense because my 34's feel a bit tight anywaysSmiley Happy. I have a chubby backSmiley Happy

 

I'll be back later but just to say-thank you for sharing, and for the moral support. I live alone, and haven't been divulging too much to friends only because they either work or have small children and/or wouldn't reall understand anyways. I honestly think that unless you've been down this road you can't possibly understand the rapid varying of emotions...like minute to minuteSmiley Happy

 

I'm now on Day 3 of Letrozole and so far I'm coping wellSmiley Happy. I know.....I realise the SE's may only present themselves in a month but I'm keeping fingers crossedSmiley Happy

xxxxx

 

Member

Re: DIEP recovery queries

Hi Marla.

I was petrified before my surgery and the night before i even wrote down all the building socitety security info and gave it to my husband in a sealed envelope in case there was a problem. Surprisingly on the morning of surgery i was calm and my head was ready for everying. The bad bits that had let me down were going and a new me would emerge. 

 

My hospital bag had so many different bras and knickers were wasn't much else in there. It maid the nurses and my husband laugh as they searched for what i needed. I had a variety and some were better than others initially but all have been used since. I was swollen and larger the first few days but you will be given advise before you go in. The constant checks means they need access to the breast(s) easily so just take there advice. Checks on me were every 15 minutes to start with for 24 hours and then they became 2 hourly.

 

All the best

xxx 

Member

Re: DIEP recovery queries

You are my heroSmiley Happy. I love your PMA (positive mental attitude)!

xxxxx

Member

Re: DIEP recovery queries

I can’t see them online. They definitely have them in the shop as I bought another pair only a few weeks ago. They’re all elastic where as the M&S shape wear has a control panel which I think would be too tight on your tummy.

It is very scary, but we’re all brave fighters & I find going into robotic mode helps! Get rid of the unwanted tumour in order to move forward. The waiting is the worst bit. Xx
Member

Re: DIEP recovery queries

Hi UGM.....Smiley Happy. Oh my goodness-you have certainly been through it all, haven't you? Thanks for sharing your journey...I'm understanding where you are at now, a little better! Your spirit and mental attitude are amazing. You seem very level headed about it all. And a true fighter! You are truly resilient. 

 

Thanks for the additional "pants" infoSmiley Happy. Now I know why I couldn't find them on-line. Don't stress over creating a link to the Primark page if you're unable to. It's absoutely fine. I'll try and find them myself. I'm also going to buy the M&S ones since I really don't know what my own team are going to advise and I want to be prepared. I'm going to pop into a Primark tomorrow. I had also noted your suggestion of an extra long phone charger from one of your earlier posts....that, too was really helpful. 

 

Thanks a million for all the tips you've provided. I'd be lying if I said I wasn't petrified of my upcoming DIEP surgery. The whole thing-anaesthetic, catheter, wounds, drains, dressings...is freaking me out to say the least.

xxxx

 

 

Member

Re: DIEP recovery queries

The bra extenders come in a 2 hook or 3 hook, you can put 2 of them on which they did with my bra in the hospital. They’re not even £2 on eBay. I’d also recommend an extra long phone charger! Again on eBay. Are you on Facebook? I’m on a mastectomy/reconstruction private group which is very helpful. I’ll try & post the pants link but I’m a technophobe!! 😂 They weren’t in with the normal knickers, they need a hanger they’re so big & heavy! 😂
I had a lumpectomy, chemo & radiotherapy first, then a recurrence so a mastectomy & more chemo, then another recurrence so an excision, then when it came back again I had the DIEP. The PS said he could have just resurfaced it but that the scars would be awful. I’m triple negative & it’s also metaplastic which is quite rare. They say I’m very unusual! It’s never spread anywhere else 🤞🙏🏻. I always thought a mastectomy completely lowered the chance of breast cancer but I now know this isn’t the case!! I’ll have a go of the link, don’t hold your breath though!!! Xx
Member

Re: DIEP recovery queries

Hi Unicorngirlmummy,

 

I hear you loud and clear re-the worry that it will return. I think that is so understandable. I'm curious though-when you say this was your third recurrence; had you had your mastectomy at recurrence #1 or did you opt for mastectomy at recurrence #3? I am only asking because I have always thought that a mastecomy lowers (but doesn't eliminate) the chances of recurrence. Your story is very interesting and you are very brave and resilient to have gone through what you have. 

 

Thanks for the bra extender tip! Are they one size fits all? I've never heard of them but will look them up now. 

xx

 

Just found them! https://www.primark.com/en/product/bra-extender-pack,r35397113051896

 

If you could paste the link to the Primark high waisted pants-I'd be grateful! The only underwear that comes up on Primark are ones not suitable for a DIEP: 

 

https://www.primark.com/en/products/category/women,lingerie--underwear,briefs--knickers

 

xxx

Member

Re: DIEP recovery queries

Morning ladies,

I too was advised to get the primark pants, they’re £5 & look like a swimming costume they’re that big!! I have to say that know I’m past the 6 weeks & can wear normal underwear, I find them more comfy as they make me feel supported. I think someone else said that too.

Yep, the hospital appointments certainly do take over your life. If you try & change one I always find the person on the end of the phone SO unhelpful, like you don’t have any other commitments!!

I like that exercise too Wendy, when you roll your knees whilst lying down. it helped with my back as I found that was very achey post op.

I was advised to get bra extenders Marla, they’re very cheap on eBay & have been very useful as I find towards the end of the day if feels tighter.

I’d like to return to the cross trainer, I hope it will help the mental scars. I had to have the diep as I was on my third recurrence & there was no room to cut it away. 2 years of surgeries, chemo, radiotherapy, surgery, chemo. My tumours always returned 6 weeks after surgery or chemo so I’m at the paranoid stage now. I find some days I feel like no, it will not stop me, & others I feel like it’s so overwhelming.

Have a good day everyone xx
Member

Re: DIEP recovery queries

Hi again

I do like my new boobs and they are softening and becoming more like boobs. And I also felt a wobble the other day as i did some washing up and it felt normal. This is new to me on one side as i have lived with onky one breast for the last 17 years and it is only now with the new diagnosis in the other breast that i have the reconstruction. So my left is a delayed reconstruction and the right is a immediate reconstruction. I was warned that the skin on the left one might not heal as well due to radiotherapy all those years ago but i am pretty impressed. This diagnosis was in January so i have been through lumpectomy and chemo already followed by the DIEP.

 

My hormone blood test was borderline so it is not clear yet what i need. I will be starting letrozole in a weeek or two and she wants to see what the blood  tests show after a few weeks of that. I just need to know the options. I am already on three weekly herceptin injections so 4 weekly zoladex as well will take over my life but at least the herceptin is short term and will finish in April. Too much to take in at the moment and i am probably worrying before i need to really.

 

Today was travel by trains and it does get you going to places you wouldn't normally go to. You do always need extra time too as nothing goes to plan. Luckily the Monday, Tuesday and Friday appointments are a long walk or a bus so not quite so bad. Tomorrow is my nin hospital day so I am going to go back to the gym and see what i can and can't do. I am sure the bike will be fine but not sure about the crosstrainer.

 

xxx  

Member

Re: DIEP recovery queries

Hi Christine Rim

 

Oh no please don’t think that you came across a bit snotty, I am just saying how the views and advice vary from region to region. I suspect I got the seroma by over doing things and it is really low at the bottom of hip scar so I doubt bigger knickers would have made any difference.

 

I am sorry to hear that emotionally you are not feeling so great, you had immediate reconstruction? If so you are dealing with the mastectomy and recent bC diagnosis as well so this will take time. I had my mastectomies and BC 4 years ago and it took me a long time to recover emotionally. In fact I would say I am feeling far better emotionally now than I did 6 weeks ago because I was never happy with my original reconstruction with the mesh and implants. The new breasts feel real not like the silicone ones, I even noticed my new boobs jiggle a bit like real ones, I was so chuffed!

 

Have they suggested having the Zoladex injections to put you in menopause rather ovary removal, I can understand you not wanted to disrupt the DIEP recovery.

 

I have found the exercise whilst you lie down with knees bent and roll your legs over to the side gently each way has helped a lot with the tight feeling in the hip to hip scar. It wasn’t on my sheet but one I found on another NHS hospitals post DIEP information sheet. 

 

Best wishes

Wendy xx

 

 

Member

Re: DIEP recovery queries

Hi Christine,

 

I realise this message was for Wendy but to say-I sympathise with how you feel re-having so many appointments. I had a week like that last week (pre-surgery) and felt like I was on the verge of a nervous breakdown. I think that what we all need to remember (and it would be nice if our clinical "teams" did too-is that we are first and foremost human beings, then we are mothers/daughters/employees/employers/carers, etc. and then we have cancer to deal with. Our lives cannot stop simply because we have cancer, and yes, maybe it does sound demanding, but I am of the view that our teams should bear in this mind when coordinating appointments for us, i.e., trying to arrange for us to see 2 doctors at once or have both scans done at the same time, etc. (whatever your individual predicament is) rather than expecting us to be free on 4 out of 5 days. I have lived in London 27 years and have travelled on the Underground more times in the past week than I had in the past 2 yearsSmiley Happy. It's a pain, it's stressful and it's exhausting. I find cancer exhausting enough....but the travel to and from.....I was raging last week-hungry, tired, etc. (my appointments are often in the evening-late clinics, etc). By the time I get home it's after 9:00PM and too late for a proper meal. Enough said. xxxxx

Member

Re: DIEP recovery queries

Hi Wendy.

Sorry if that message came over a bit snotty . As i said i think my hospital was a bit over the top on caution. I would not think your seroma was anything to do with the pants as you said you had them pretty tight.

 

Now I am at week 8 I am feeling better physically but emotionaly i am not sure. I think the whole process seems to be going on and on forever and i just want a normal life back. This week i have hospital appointments on 4 out of the 5 days but i know it is just one of those weeks where everything ends up together. Today i had an appointment for a wound check as i had a few small areas that had't healed properly and a small amount fluid was leaking. I have now been given the all clear on that side so that is good news. The rest are non surgery things to consider including the option of ovary removal which my oncologist is considering but i am not going to weck the DIEP recovery for that so will see what the options are. I do need to start on some of those exercises and a few sit ups I think and see if they help the tightness.

 

All the best

xxx 

Member

Re: DIEP recovery queries

Thanks Christine! I'm trying to get all my stuff well in advance so that I'm not rushing around in the last week; I suppose my BC nurse may advise at my pre-op-my pre-op appt. is just over a week prior to my surgery. Hopefully enough time to buy last minute bras/knickers but with my luck they won't have my size, etc. which is why I'm trying to sort it all out nowSmiley Happy.

xxxx

Member

Re: Control knickers....

Thanks a million WendySmiley Happy. I'm not tall-I'm 5'2 so I suspect the ones you originally suggested should be fine. 

 

I might pop into an M&S this week-have been ordering on-line but keep ordering the wrong sizesSmiley Happy>

xxxx

Member

Re: DIEP recovery queries

It just goes to show that every hospital and surgeon has different advice and opinions. I wasn’t really given any advice other than told to wear support pants, my surgeon has seen the ones I have been wearing a few times now and not said anything about them not being high enough and I do have a seroma, whether that wouldn’t of happened with different knickers we will never know. 

 

I was was told to wear my support pants and bra for 3 months 24/7.

 

How is your recovery going?

 

Wendy xx

Member

Re: DIEP recovery queries

I was told off for wearing pants that low and told to get the Primark ones that actually meet the bottom of my bra. I was told i needed to protect the whole of the front of my body to stop seromas. But as i said before each hospital is different so you may get other advise. As you will be wearing them for 6 weeks you can always try one style to start and change to another if you need to later on.

 

xxx

Member

Re: Control knickers....

Yes, they are the ones. They come just to the bottom of my belly button. I am short waisted though and only just under 5’4”, if you are taller and longer in the body then they might not come up as high. Perhaps go into an M&S and try them on over your existing knickers, that will give you a good guideline. 

 

I have found that you need most of the protection around the hip to hip scar and up to belly button.

 

I also bought two pairs of these but have barely worn them as they are so uncomfortable but more supportive.

 

https://www.marksandspencer.com/firm-control-no-vpl-high-leg-knickers/p/p22232471?prevPage=plp&pdpre...

 

Wendy xx

Member

Re: Control knickers....

HD Survivor: are these the knickers you bought at M&S?

 

https://www.marksandspencer.com/2-pack-firm-control-cotton-rich-floral-lace-panelled-full-briefs/p/p...

 

Do they actually come up high (to protect the tummy)?

xxxx

Member

Re: DIEP recovery queries

Thanks Christine! I think I bought the same sports bra as you from M&S. I've also purchased a couple from Nicola Jane but I think the band size is too small (it's my normal band 34...I may need a 36). Good god! I'm going to be able to open a bra shopSmiley Happy. Thanks for the tips-it really helps.

xxx

Member

Re: Control knickers....

Thanks a million HDSurvivor.

 

I actually did wonder if I ought to up a band size too but as of now, I've just ordered a cup size bigger. I'm going to end up with 6 bras all different sizesSmiley Happy. I suppose I can donate them in the future...my mammographer goes to Africa a couple of times/year and brings bag fulls of bras for the girls. 

 

Thanks for the knickers suggestions...I'm going to have a look at M&S soon.

xxx

Member

Re: DIEP recovery queries

Hi everyone

 

I have just been reading a few more details of your posts and it does seem that everyone has had very different advise. On the exercise side i had a booklet but there was no mention of situps so i assumed they came under the don't do until 12 weeks area. On checking online it seems most of the nhs sites say 8 weeks before doing any abdominal exercises which is where i am now. Even then they are not full sit ups to start with but just head and shoulders of the bed. My surgeon has been ultra cautious and told me if i do too much too soon i will end up back in theatre so to take my time.

 

Also i note someone said they didn't have to inject themselves. I had to inject myself the night before surgery and for 14 days after with the blood thinner. They were very good at showing me what to do while in hospitla but i had to do them myself so they could tick the sheet to say i was doing it properly. Hated doing it but got through it. I think the hospital was very proud of its record of no blood clots after surgery.

 

I think anyone who hasn't been through it will just need to take the advise of the hospital as they must be the ones who know the patient best. I was told to listen to my body and if it hurts not to do it. If it is just a bit uncofrtable then that is fine and just stretching. If in doubt use the helplines as most of the time they are very helpful.

 

All the best for those still healing. Hope the seroma will reduce and you are more comfortable. You could do without that on top of the rest of the process.

 

xxx 

Member

Re: DIEP recovery queries

Hi unicorngirlmummy

 

I have finally been able to drop the extra pillows and sleep on my side, much easier to get a reasonable night’s sleep. I just find it difficult when I want to turn over, have to slowly sit up and turn around, but getting easier. I didn’t get on very well with my v shaped pillow this time (Dunelm), when I had my mastectomies I had a cheap one from Argos that I have much more comfortable, it was softer and more snuggly. 

 

Feeling a a lot better now the fluid is coming out and the antibiotics are working. 

 

How is is your recovery going?

 

Wendy xx

Member

Re: Control knickers....

Hi Marla13

 

For my bra I needed to go up and band size. In fac I had to come out of hospital braless as the post surgery bra that I had taken into hospital and used after my mastectomies and implant reconstruction didn’t fit after my DIEP as I was so swollen, I am now able to wear that bra, but not for the first three weeks. I went braless for the first week and then rushed over to Nicola Jane’s to get fitted. 

 

As as for the control knickers I was told to buy my normal size, but no way could I get them on. I didn’t wear knickers in hospital as I had a catheter in until just before my discharge. I had got some sloggi knickers to come home in and wore for the first week or so, they are big high waisted but not control and were enough initially. I then found M&S pack of two firm control cotton knickers the best, £15 for two pack. I wore two sizes bigger initially, then couple of weeks ago dropped down another size and will probably get my usual size on ok now. 

 

Glad and you have a date for your surgery, the time will soon come around. Xx

Member

Re: DIEP recovery queries

I was told to go for Primark knickers as they are high wasted and not expensive. The size i was told to get was one that i could fit a hand between me and knickers comfortably before surgery. This worked for me. They were ok to wear and actually make me feel more secure, like i was being kept together, if that makes sense. They didn't cause any pain. It is ont easy going to the loo when you have drains still in place and tight knickers but you get used to it.    

 

For the bra i was told to go up a band size as the dressings take up room. I got a variety so whilst in hospital i had a slightly less controlling soft bra which i got from Amazon. Once home i found a comfortable high impact sports bra from M & S.  

Member

Control knickers....

Hi Unicornmummygirl,

 

I hope you are continuing to heal well post-DIEP surgery? 

 

I'm getting organised for my DIEP surgery on 14th Nov. and wanted to know if you have a recommendation for control knickers-and do they hurt to wear immediately post surgery? I read somewhere to buy a size larger than I normally need (I've done the same for my bras)-I'm normally a dd but have bought an e bra cause the plastic surgeon said my reconstructed breast may be a cup size larger-he'd rather have to reduce it later than have to touch the non-cancerous breast. 

 

With that I welcome your recommendations re-knickers! I have yet to buy those! 

xxxx

Member

Re: DIEP recovery queries

Hi Christine, you’re a week ahead of me. Sleeping is an issue. I tried without the V pillow last night but that wasn’t comfortable. I think the V pillow is making my neck ache.

Sorry you’re having such problems Wendy. Fingers crossed that it can now heal. That must be such a relief to have all of that fluid drained. Thank goodness it didn’t hurt, it doesn’t sound nice 😳 xx
Member

Re: DIEP recovery queries

Hi. I didn't notice this thread before. My bilateral DIEP was 14th August and so now i am feeling much better than i was. 

 

It was interesting to read through all the different advise you have been given. I did my first sit up this morning but it was not on any exercise sheets i was given. I had a small booklet that went up to 4 weeks post op only and just had pulling the tummy in as you raise your hips. I was told no intense exercise for 12 weeks but want to get back to the gym and see what i can do.

 

I aagree that energy levels are very up and down even at this stage.

 

I had three small patches that are taking there time to heal but my hospital have kept a close eye on them and now one has sealed itself and other two are nearly there. I am not a bath person so i haven't tried that yet.

 

My first few weeks i was taking taxis to hospital appointments as the hosptials had no parking and i couldn't do the underground trains and stairs. It was an expensive time but now i am fine to travel on public transport. I do find walking too far in one go makes my tummy hurt.

 

I am still not sleeping but i think that is the joint aches from the herceptin more than the DIEP. I am now on my side cuddling a pillow to support my shoulder.

 

Will go back and read through your posts in more detail. 

Member

Re: DIEP recovery queries

Hello

 

I was back to see my Plastic surgeon this afternoon, apparently I should have been contacted Friday following my scan last week to have my seroma drained, no one contacted me! Fortunately the antibiotics have helped and some of the swelling has gone down. I did have a seroma really low on the right side of my hip to hip scar and it has been leaking fluid through a small hole, surgeon said how it wanted to come out of there so poked a hole in the scar (didn’t hurt) and lots of fluid, blood etc came out, I now have a stoma bag over the hole to allow the remaining fluid to drain out. Feels easier already to have that fluid out. They are pleased with the improvement in the wounds that weren’t healing very well. Back again next week for another check up.

 

Best wishes to you all

Wendy xx

Member

Re: DIEP recovery queries

Hello,

So pleased that your wound is healing now Wendy, you’ve had a really rough recovery 😕 I hate to say it but I find the support pants more comfortable than normal knickers! I wore a normal pair this week but went back to the support pants 🙈 Yes, scooping out ice cream is really hard!! It’s funny how the exercise advice differs with each trust. It’s only 10 sit ups. We’ve had quite a busy weekend & I forgot to do them, I can feel my shoulder isn’t happy for forgetting.

I hope that your TENS machine is helping Di?

Hopefully that has reassured you Marla. I had to wear the TED stockings for 3 weeks, it’s hard to get those on & off for the first week or so.

I hope your scan goes ok on Tuesday Wendy xx
Member

Re: DIEP recovery queries

Hi Unicorngirlmummy....apologies for the late reply. I have been having one of those weeks, getting things in order for surgery, etc. I actually spoke to my surgeon yesterday and she assured me that they will only discharge me from hospital when I am well and able to climb stairs. She also said that by no means will I need my dressings changed daily (I will be in hospital 5-7 days) and if I need a longer stay, they will let my insurance co. know. I appreciate that not everyone has health insurance but she was quite clear that one of the differences between NHS patients and private is that NHS patients are usually dischaged sooner, perhaps justifying the district nurse call-outs. She is confident I will not need visits and will only want to see me a week post-surgery, with the plastic surgeon.

 

I agree 100% that I will need some home help and am trying to arrange that now (over the next couple of weeks) so that I don't have to deal with this stuff in the immediate lead-up to the surgery.

 

Hdsurvivor: I hope you are recovering well-I've been reading your latest post and it does not sound fun but it sounds like you are coping as best as one can expect! You are all my heros....all of you who have gone through the surgery and are recovering or long past recovery. 

 

I can't wait to be on the other side of it so that I can be of more help to other ladies on here. At the moment I feel I am just "taking". I look forward to being able to give back.

xxxx

Member

Re: DIEP recovery queries

Thanks very much Unicorngirlmummy and the others who have addressed my concerns: I'm having one of those weeks-lots of appointments and floods of info. I will reply properly on the week-end but just to say I really appreciate your input-it is invaluable and I hope you are all doing as well as possible!

xxxx 

Member

Re: DIEP recovery queries

Hi unicorngirlmummy 

I feel a bit better today after having been back to the hospital yesterday due to my concerns. The wounds they weren’t healing very well have over granulated which is stopping the skin healing over. I have been given a new dressing regime, daily dressing change, using jelonet, hydrocortisone cream and then micropore dressing. I am able to remove previous day’s dressing prior to shower and get water on the wounds which is good. When I changed them this morning I could already see a marked improvement. Although they didn’t think I had an infection, I have had spikes in high temperature since the weekend, so they took blood tests and increased the dosage of the antibiotics my GP surgery had put me on, on Monday. I have felt this has helped, within a few higher doses I am not as feverish or feeling poorly. The only unresolved thing is the pain in the right side of my hip to hip scar, it is really swollen, the scar really red, but healed and the skin is quite purple, it feels quite hard in the area. I had a scan yesterday and she confirmed it was fluid as I suspected. I go back to see my plastic surgeon on Tuesday, so not sure yet if they will drain it. Meanwhile I am wearing even tighter control pants to see if that helps.

 

i havent been told to do sit ups after six weeks, my exercise sheet just states you can slowly build up more advanced excercises and return to gym. I will try and start doing sit ups next week if my fluid build up has gone as keen to benefit from the flatter tummy. (Though really swollen at moment with the fluid).

 

I note that you had to inject yourself for 7 days, this must depend on hospital as I didn’t have to. I was given them whilst in hospital, I think I had three or four in total as I was only in three nights.

 

You did well peeling potatoes and carrots 2 weeks post surgery, I tried to cut a pineapple a few days ago,and really struggled. I have found very strangely it very hard to scoop ice cream out of a tub every since I had my mastectomy, one way of stopping me eating it too often 😂.

 

How is everyone else getting on ?

xx

Member

Re: DIEP recovery queries

Hi Marla,

Everywhere is different, but I think they like to see you in the plastic dressing clinic first. After that it would be with your practice nurse. If you live alone then the hospital could arrange for the district nurses to see you after the initial first dressing change. From what I’ve read, they use a special surgical tape, they give you spare which you’d probably be able to do yourself.

As Wendy says, you might need someone to stay with you for a few days at least, help with washing, cooking etc. I’m usually quite fit & very active, but peeling potatoes & carrots really took it out of me the first week/2 weeks. Your body really does let you know it needs to rest. Also, you have to inject yourself for 7 days.

How are you doing Wendy?

I’m now 6 weeks post op & had to include sit ups in the exercise sheet that I was given. Oh my word...that did hurt 😐 only on one side of my tummy strangely!

I hope everyone is doing ok xx
Member

Re: DIEP recovery queries

Hi Wendy-thanks so much for such a detailed account! I am so pleased for you that you don't regret your decision. It seems like many DIEP women have mixed thoughts post-op whereas you implant ladies are more content with the outcome. This is my impression anyways. 

 

I definitely won't be driving myself to appts post-surgery but I think I will be using UberSmiley Happy. I don't have *anybody* nearby-all my friends work or live far away. I'm OK in an Uber. 

 

It sounds like I'll need to make sure my consultant communicates well with my GP practice. I won't be needing sick notes as I work for myself, it was more the dressing changes I was concerned about, but I'm also prepared to hire a nurse if need be, if my own GP practice can't get their act together. Thanks for suggesting I ask if they can arrange a district nurse visit...I will ask them. I'm late for work so much dash but I hope you are feeling well and will be back in touch soon...I wanted to reply to you ASAP but am rushing as I am doing so. 

 

Sending you lots of healing vibes...all of you ladies who are post-op are my herosSmiley Happy.

xx

Member

Re: DIEP recovery queries

Hi Marla13

 

I see you are a the vital decision making stage, though I am struggling a bit at the moment I do not regret having the surgery for one moment and my new breasts now look a very similar size and shape to my natural ones, quite a feat when my plastic surgeon had never seen them as mastectomies were done Sep 14 and I had silicone implants with mesh, implants changed again in Nov 16 as had rotated (anatomical implants). The new implants were the round ones but they soon capsulated and moved up and out towards my shoulder.  I don’t think the recovery from the implants was an easier or less painful, just the pain in different areas.

 

As for GP and dressings, ny GP sounds like yours can’t get an appointment unless you turn up on the day and wait ages withthe crowds to see someone. My surgeon didn’t arrange for me to be seen at my GP but I was given a copy of the letter they send to GP regarding what had been done etc and I was to,d t9 show my doctor that in case I needed to see him before they got the copy. I had to see my PS 6 days after my operation for a dressing change, all the was done was for the surgical dressings to be removed and then they taped them up with surgical tape (micropore tape) I was giving the rest of the reel and told to change it every 4-5 days and that was it. The only reason I am seeing a nurse at my GP surgery is because I completed and online consultation on my GP’s website asking for a further sick note and stating my wounds weren’t healing. I then got a call from my GP asking me to come in an hour later for them to look at, the doctor then got the nurse to dress the wounds and she booked me in for follow up dressing changes. 

 

Every hospital and GP surgery are different, perhaps you could ask the hospital when they discharge you to request a district nurse visits you two or three times a week initially. 

 

Have you got someone that can come and stay with you once you are discharge? You can’t do much at all and will need support and someone to take you to hospital fo4 post op checks. You won’t be able to drive for quite awhile, I am almost five weeks post op and am a way off being able to drive yet.

 

I hope all goes well tomorrow and ask them plenty of questions. Are you having a delayed reconstruction or immediate?

 

best wishes

Wendy xx

 

Member

Re: DIEP recovery queries

Hi Wendy, Unicornmummygirl and Strawberry,

 

I'm so sorry to hear of the problems you're having post-DIEP surgery. There seem to be many women on this forum who have struggled after this surgery, for one reason or another. 

 

I'm still early days in meeting with consultants pre-op and before I decide to go down the DIEP route (which I believe is the one best suited for me-to be confirmed tomorrow) I wanted to ask you: how easy is it to get appointments at your GP practice for things like changing dressings, etc?

 

My GP practice sucks in that you can't get a face to face appointment with anybody there before 3-4 weeks time unless you ring up/show up on the day...anf presumably sit there for hours (?). I've never had to do that, thank god, but am wondering what kind of support I will receive from them post-operation? Are they obliged to look after me, and to prioritise post-op patients? The hospital where I will be having my surgery is a good 45 mins. drive away (30-45 by Tube) so would prefer to have dressings looked at locally if they will accomodate me. Is it customary for surgeon to write to GP post-op and say "please look after this lady"??

 

I *am* concerned because I live alone and will have to make my own way to all of my appointments.

 

How involved do GP's *have* to be in looking after us post-op? 

 

xxx 

Member

Re: DIEP recovery queries

Hi unicornmummygirl and strawberry, 

 

Thank you both for your replies.

 

I went to my GP surgery yesterday for the nurse to change my dressings and the nurse thought that it looked as though an infection was starting in my hip to hip scar, so she has put me on antibiotics for a week. Hopefully after a couple of days of taking these, my wounds might start to heal better. I do have quite a lot of swelling on the right side of my hip to hip scar and wondered if this could be a seroma, how do you tell and does the body just reabsorb the fluid in time? 

 

I dont feel I have much in the way of after care from this surgery. I saw my PS in clinic 6 days post op and then appointment for 6 weeks after that. I did see him again 2 weeks post op after I rang when I thought I had an infection, but told nothing to worry about and giving inadine to put on wound. I am not sure if I can contact BCN as I had my mastectomies and SNB four years ago after my BC diagnosis so I have not had any contact with them for some time. Breast clinic and Plastic Surgery two separate departments, I feel a bit out of the loop. Also I did not go onto the ward after my surgery as expected, I just stayed in the high dependency unit  and was discharged from there, and they do not usually do the discharge, so wonder if I have missed some important after care information. 

 

Hope you you are all doing well?

 

Best wishes

Wendy x

 

 

Member

Re: DIEP recovery queries

Hi Wendy

 

Sorry to hear that youve had more pain and healing problems. I found that in the first few weeks the sensations in my stomach/abdomen kept changing, some days things felt  worse (and looked worse) than  others. Its difficult not being able to see inside yourself to know whats going on when you get a bit of jabbing pain or strange itches.  I had bruises coming out around my breast and along hip to hip scar for quite a while. The colour definitley got worse for a while.

 

I guess that the layers of tissue are really traumatised as its a major operation so its bound to take quite a while for things to knit back together. If youve seen a nurse or doctor and they dont think its infected then take the painkillers until it eases off and give it some time. I did notice that some areas healed more quickly than others, no idea why but over time everyhting did heal and once I was able to massage the areas gently I found this really helpful. Im sure you will be back on track soon.

 

Look after yourself and hope things are improving already

 

Strawberry

xx

 

 

 

Member

Re: DIEP recovery queries

I’m sorry you’re having a bad time Wendy. Have you contacted the BCN? It sounds like the surgeon needs to check it? Xx
Member

Re: DIEP recovery queries

Hi ladies, 

 

I hope you are all doing well? Thank you all for your replies.

 

I have been really struggling the last few days, the pain in my lower scar has been really bad and I am back on strong painkillers, when I had gone about a week of hardly taking any. My stomach has also become really swollen and heavy and I wonder if this is what has been causing the pain, it is also putting a strain on my scars and the hip to hip scar is not healing very well, and very red and yellow in places, I am told it is not infected.

My left Breast is also not healing very well but my right one is almost healed, you wouldn’t think it was all done at the same time to see the varying levels of healing.

 

I feel quite down and frustrated because between week 2 and 3 I was feeling really good and expected that to just keep improving, now I feel much worse so I am feeling frustrated by lack improvement. Did anyone else feel they got worse before they got better?

 

Wendy xx

Highlighted
Member

Re: DIEP recovery queries

Thank you so much Unicorngirlmummy, I am greatly comforted and reassured by the comments from you and Strawberry.
I think without the added complication of my arthritis, I would be alot happier, my other half has just picked up a TENS machine hoping that will help get me comfortable .... I can do this 💪💪💪

Thanks again lovely ladies 😘
Di
Member

Re: DIEP recovery queries

Morning,

I will be 6 weeks post op on Tuesday Di. At times it does feel that you’ll never be fully straight. And then when I looked fully straight, it felt like I’d never be able to walk properly as it felt so tight. It must be made even harder with your arthritis. It’s still early days & I found I only started feeling more human by about 3 weeks. It will come, it’s only been just over 2 weeks for you. It doesn’t help not being able to do anything, I’ve found too much time at home makes me over analyse everything!

I hope you have a better day today xx