Hi ladies,
I haven’t posted for a long time but after having recently had a bilateral DIEP flap reconstruction I wanted to ask a couple of things from ladies out there that have already been through the process.
I had my operation on 29 August, so I am now on day 16 and recovering quite well, but I am really struggling with sleeping and getting in a comfortable position. I am currently sleeping propped up on several pillows, v shape pillow etc and pillow under knee, but as a side sleeper this is possibly the worst position for me comfort wise, but I know necessary, can any ladies out there let me know at what stage they could return to sleeping in their normal position?
Also I am only allowed a shower at the moment and I really miss my baths, at what stage can you return to having a lovely old soak in the bath, I am guessing this will probably not be until around the 6 week mark?
And how long are we expected to keep these awful control knickers on, they are so uncomfortable!
Best wishes to you all
Wendy xx
Hi Wendy,
I’m a week ahead of you, I had a DIEP reconstruction & reduction to the remaining breast on the 21st. I remember thinking I’d never be able to walk properly last week, but a week later & the difference is huge! I’m also a side sleeper & this has been really hard. I’ve not woken the last few nights being uncomfortable & I even managed to lie on the reduction side last night. I was told 6 weeks of wearing the control knickers & bra for 23 hours a day. As for a bath, I would imagine 6 weeks, once the wounds are fully healed.
The hospital I had mine done had a number for the reconstruction nurses, do you have a contact, they’d be the best people to ask.
I hope you continue to recover well. Xx
Hi Wendy
I had left mastectomy and immediate DIEP last November, I kept a diary so can tell you what I did.
I found sleeping on my back the worse thing about it as Im a side sleeper too. I got an awful headache in hospital due to being propped up. Once home I reduced the height of the pillows after a week so I was only a bit propped up. I slept on my side 2 weeks after the operation on my right side. I bought a narrow (half width) pillow and hugged that when I went to sleep which made it more comfortable.
I stopped wearing the control pants at night four weeks after operation and stopped completely at 6 weeks. I actually found those anti thrombosis socks worse. I dont have baths and I could not have got out of the bath unaided for the first 6/7 weeks, my scar had healed well by 7 weeks so probably could have had one, perhaps best to check with your dcotor/nurse re bathing.
All the very best for your recovery, the time does go quickly and Im sure you are already feeling a lot better.
Strawberry
xx
Hi Ladies,
I am Day 15 post op, left mx/immediate DIEP.
I am struggling to stand upright. Any advice would really help. I do well in the morning, then as the day goes on it becomes harder to achieve.
I have sacroilliac arthritis in my back, which has flared up since my surgery and is not helping the situation.
Kind regards,
Di.
Hi Strawberry,
Thanks so much for your reply ?. I have felt a bit low today, and questioning my recovery, silly me.
I was discharged at Day 6 post op, and given no indication as to how long to expect to be stooped. At least I am more mobile than I was, grateful for the little progress each day too, just need to be patient and also build up my strength. And like you I have done everything suggested re arm/shoulder exercises.
I am at Plastics dressing clinic on Monday, I will ask advice before speaking to Physio about my arthritis.I have been pain free since Feb 2017 following injections into joint, so disappointed with the flare up.
Will get there though ??
Di xx
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
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
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
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
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.
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
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.
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
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
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
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
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
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
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
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