Member
Posts: 124
Registered: β€Ž28-12-2017

Re: Diep reconstruction

How' s everyone doing?

 

I'm home now and 1week post op. It's strange looking at what I posted before and how I feel now. I'm quite surprised by how well I do feel as long as I don't cough, sneeze or laugh!!!! Ouch!!!! Feel happier than I've felt since my diagnosis before Christmas. Body looks bruised and battered, but cancer well and truly evicted and body showing promise. Managed to stand in my shower this morning! Hubby surprising me on how well he is looking after me.

 

One thing I must say is how well cared for I was in hospital. All the staff were amazing. I was a long way from home (2hour drive) hubby and a couple of family members visited in the evening, but because of excellent care I felt very safe.

 

Would love to hear how those who've gone before me are doing now. Hope you are all feeling amazing. xxx

Member
Posts: 124
Registered: β€Ž28-12-2017

Re: Diep reconstruction

Good idea about the weepy film, Strawberry and comforting to hear you feel so well.  Been for preop assessment today, so last barrier passed before op and the real effect of this hits me.  I told the nurse today that I actually feel terrified.  I like to put on this mask that I'm coping well and I must admit I sometimes surprise myself, but it does get so tiring and, whilst she's no longer around, I really need my mum to pick me up and tell me she'll make it all better. I'm 57 and feel like a 5 year old at the moment.  Just hoping I don't show myself up on Sunday and actually act like a 5 year old!

 

I've made contact with someone on here who lives quite close.  We haven't met up yet, but being able to physically have a conversation with someone who truly understands how you feel without feeling you've got to be guarded, or put on some mask or false front, felt good.

 

As for control pants!!  As I've lost 3 1/2 stone and most of my clothes don't fit me.  I had bought some new control pants for the op when I extpected it to happen in February.  I've had my case packed ready to go since then.  After a discussion with the nurse today, I've come home and tried them on and I don't have enough for them to support anymore. I need to get out tomorrow and buy some smaller ones! Good problem to have really.  I shocked the surgeon as well when she saw me and she has had to reconsider the reconstruction. Will have a breast lift now rather than just a restuff and she says she is going to overstuff, so that as I lose more weight I won't be left with empty bags! May try to weigh them again to see how much I'll lose instantly on Sunday.

 

The op is being done in a private hospital, but in an NHS slot. The last nurse I saw was just for a blood test, when she saw the plastic surgeon I was having, she asked me if I was excited about the op.  Excited!  I told her I was scared stiff, but I would be pleased to get the cancer out.  She looked a bit shocked, as I think she thought I was just in there for the joy of a boob lift and a tummy tuck.  If only it was by actual choice instead of necessity. I would in that case not be putting myself through this. 

 

One of the other nurses said that this op is being done there every Sunday at the moment and it's mostly NHS slots.  I had rung a couple of months ago to the same hospital, because I knew the surgeon I wanted operated there, to  find out how much it would cost to pay privately, thinking I would be able to get it done quicker (money available from a pension pot if I had been desperate), but was told I would get it done quicker on the NHS!! Never expected that.

 

There's wifi in the room, so I'll post to let you know how I get on when I'm coherent and not overheating from the heated blanket I've been told I'll be wearing for a couple of days.  Looking forward to the Letrozole hot flushes when I'm wearing that!  Hand held electric fan bought and at the ready. xxx

 

Member
Posts: 5
Registered: β€Ž09-06-2017

Re: Diep reconstruction

Hi Fairy Dust

 

Trust your intuition, if you need to take time out before the operation then do it.  Its a long slog in the months leading up to this, lots of appointments and tests as well as the emotional strain. (not too mention the dilemmas around the type of control pants to buy and falling over in the changing room trying to get them beyond my thighs!)

 

If you cant cry, you could try finding the weepiest film youve seen and see if it works. As for screamining you could sing/shout along to something loud - whatever takes your fancy -heavy metal?

 

Do whatever  you feel like doing, anything  you do is OK if it gets you through.

 

Looking back I think the things that helped me most was talking to other people, telling them if I was scared, accepting support. Also dont worry too much about whether youve prepared for the operation and recovery - I remember talking to a nurse on the ward about putting on some pants and pyjamas on day 2 and her saying 'its probalby easier to keep your hospital gown and go commando' and it was. 

 

After the operation take as much time as you need to recover - you may want to tell your employer that it could be 3 months - you may well be feeling pretty good after 6 weeks but you cant tell until you are recovering.

 

Im now 22 weeks post operation and feeling very well, I realise that it made a huge difference to me to have an instant new boob. It is a long operation and there were a couple of times when I wondered if I had made the right choice, but it was a good decision and I am very happy with the result.

 

Time goes by quickly and in no time you will be like me, ready to decide about  a new nipple and tattoo.  

 

All the very best 

 

Strawberry

 

 

Member
Posts: 124
Registered: β€Ž28-12-2017

Re: Diep reconstruction

Thanks Jacqui and Strawberry.  Not been on for a while. Looked in a couple of times, but not felt up to posting. Emotions all over the place with just over a week to go until the op. 

 

Seeing GP tomorrow about maybe going off work next week.  Managed to keep going for the last 5 months through this, but really finding it difficult to put that happy face mask on every morning.  I love my job, but think we sometimes just need to take time for ourselves through this ordeal, if only to maintain our sanity. Feel like I could do with a good cry (or very loud scream), but haven't been able to.

 

Hope everyone on here is recovering ok. xxx

 

 

Member
Posts: 241
Registered: β€Ž27-12-2017

Re: Diep reconstruction

Hi chasanddave, great to hear your story, I will be having surgery (diep)
at whiston hospital but not until July. I just popped in here to look for advice and see whats coming
Member
Posts: 106
Registered: β€Ž29-07-2017

Re: Diep reconstruction

Hi fairy dust. I felt similar to you: on the one hand I was terrified and overwhelmed, but on the other hand, I just wanted them off to get the cancer out! I was also bizarrely excited at the prospect of a tummy tuck! I'm a fat cow! the morning of the surgery I was terrified, but the team were amazing and so relaxed and calm that I felt safe and reassured. The aftercare on the ward was top notch.
We'd be somewhat mad wouldn't we if we weren't scared at the prospect of such a major op. I'd had chemo first and the surgery was easy compared to that! deep breaths hun. you can do it. Jacqui xx
Member
Posts: 5
Registered: β€Ž09-06-2017

Re: Diep reconstruction

Hello Fairy Dust

 

I had my DIEP in November and I felt very much like you, both wanting to move on with things but being scared about the actual operation because there is no going back.  I had a delay becuase when I had my pre-op CT scan they discovered a large cyst on one of my ovaries and I had to have this removed by keyhole surgery and then recover before they could do the DIEP.

 

The way I tried to think about  the operation was not so much losing my breast but losing some unhealthy bits and relocating some of me. 

 

You will get through it and cope with whatever happens. I have recovered well and been amazed at how quickly the time goes by, which means that the worst bits are soon in the past. I am not very good at asking for help but decided that I would take everyone up on their offers of support, visits, food etc and this really helped.  I also decided that I would not keep it secret and everyone was really supportive. I support my Mum a lot and all her neighbours, district nurses etc made sure that she had lots of support when I was out of action.

 

All the very best for the 29th. 

 

 

 

 

Member
Posts: 124
Registered: β€Ž28-12-2017

Re: Diep reconstruction

Sarah, CJ, Yasmin and Jacqui (hope I've got everybody whose very recently gone through this on this thread) how are you all doing now? Hugs to you all. Hope everything is going well with your healing. I know you're all at slightly different stages of recovery, but hopefully you're all feeling more like yourselves.

 

I've got my date now, Sunday 29th April, it's a weird feeling, because whilst I can't wait to get the cancer out of me, I don't really want to have to go through this op or lose my breasts and then I can't wait for the op, so that I can be on the other side of it and get to know what we are really dealing with and start looking forward. Don't we have to run the gamut of emotions with all this? Does anyone still feel sane after this? Love to you all xxx

Community Champion
Posts: 504
Registered: β€Ž27-10-2014

Re: Diep reconstruction

Hi Sarah,

Expect you have had your op by now & are starting your road to recovery. I had a DIEP last year. I employed cleaners, gardener & food shopped online! I needed some support the first couple of weeks but after that managed well on my own. I bought a wedge for my bed and had lots of pillows. I slept well like that! 

My job is very active and involves lifting and unloading as well as lots of driving, as well as working in none desk scenarios! So my consultant told me that I would need at least 6 months. I went back after seven months. The specialist nurse told me they dont let anyone back before three months and then only if they are sat  at a desk. So my advice is take it steady and give yourself time as its a massive op and it takes it out if you. I asked for a phased return and am glad I did as found I tired easily. 

Am delighted with the outcome of my op it looks amazing. About to have the next op with an uplift to the other breast to match and a new nipple formed on the new boob. 

 

Wishing you a straightforward recovery. Xx 

Member
Posts: 7
Registered: β€Ž01-09-2016

Re: Diep reconstruction

Hi Sarah

Hope you don't mind me asking but as I am also due for surgery with Mr Favaro (having too been with Mr Rhodes) I was wondering how you are following your surgery.  I hope all went well and you are now recovering.  Would love to hear about your experience.

Member
Posts: 124
Registered: β€Ž28-12-2017

Re: Diep reconstruction

I've found this thread really useful. I don't have an exact date, but am told they are trying to organise for early April. Trying to get organised at home for my period of inactivity! The tip about the little electric fan is really useful.

 

I was diagnosed in mid December (multi focal 4 areas invasive ductal in right breast) and feel I have had to really fight to get the surgery and reconstruction I want/need, because I wanted the other breast removed as well. I am having to travel 2hours to see the surgeon who has accepted me and who has been so supportive since I met her. My local area don't even do the diep reconstruction and gave me no information about where I could go. I found my own surgeon, but the delay and battle I have had has caused me a lot of anxiety and distress. I am also concerned that it has allowed the cancer time to spread. I was originally told my lymph nodes were clear, but now I have  35mm piece in 1lymph node and have to have a level 1clearance at the time of my surgery.

 

We shouldn't have to go into battle with the NHS when we are already going through the biggest fight of our lives! They shouldn't treat us like we are automatons who don't need information and will be good little girls who will do what they tell us and be grateful for it!  That's another rant over!

 

Feel quite calm at the moment, but know that will change once I get the date.

Member
Posts: 106
Registered: β€Ž29-07-2017

Re: Diep reconstruction

Hi Sarah. I had a bilateral mastectomy with diep reconstruction 3 weeks ago in whiston hospital liverpool. they are amazing there. the Bair hugger heat pads were hard work ...especially as I've been flushing since tamoxifen started. I bought myself a chillow pillow which I took in which offered wonderful relief! I also took in a small battery operated hand fan. I was up and walking on day 2 (well, more 'hobbling!') & thought I'd never be able to stand up straight again! however with the help and reassurances of the physios I was more or less upright by day 5 when I was discharged!
I did buy front fastening nighties etc but stuck with hospital gowns instead as they were so much easier for the constant checking (was every 15 mins the first night to check blood vessel whooshing in breast with a doppler) and to accommodate the drains and catheter. All the drains were removed before I came home and that first shower was heavenly! I bought front fastening soft bras but they were too small with the swelling. tHe hospital provided 2 beautiful M&S ones fitted by the OT.
All in all it is a huge op but worth it! I couldn't handle the thought of implants which may need replacing in the future. The frustration is holding back from doing too much at home and having to rely on others for help. But I'm. getting better at that! very best of luck with yours. take care, Jacqui x
Member
Posts: 291
Registered: β€Ž01-05-2012

Re: Diep reconstruction

Hi Sarah,
I didnt get to Bossom Friends as not feeling upto it. Decided to think about the nipple recon when im over the recon. One thing at a time .....
Like you, i wondered what to take into hospital so i rang and asked my surgeons sec to ask. She gave good advise, usual toiletries, full knickers (i bought sainsburys own cheap ones). No girdled required for me but maybe you should ask about this as many on here seem to have needed one of these.
I asked my surgeon about this & he told me that they way he stiches doesnt reqire a girdle πŸ€— they really are progressive & fantastic at BRI.
Bra cropped tops. I brought 2x m&s pack of 2 Β£14.
Loose top & pants to go home in.
I took a front fastening nightie rather than pjs but didnt wear it. Just wore the hospital one as doctors need easy access as will be checking new breast contantly. I didnt have the energy to bother wearing my own.
I too care for my mum and made provision before the op for her to be looked after whilst i recover.
Also my family have stepped up whilst i take a back seat. Hope you are able to do the same Sarah.
One the first day i was totally out of it. My surgery was an epic 12 hours. So no visitors needed. The surgeon rang my family when op complete.
2nd & 3rd day still pretty spaced out but my husband came to see me. I decided not to let my children visit till i was out of high dep & on the ward.
I was stood up and walking slowly by day 4 and discharged on day 5.
The first week at home is a bit of a blurr. I slept alot. 2nd week started to move around a bit more.
Ive got better and better since. Trying to walk out every day (weather permitting!). Pottering about, cooking etc....
6 weeks post op & im getting around ok, not driving yet or lifting anything heavy tho. My body really letting me know when ive done too much.
Planning on going back to work after 3 months but only if im fully recovered.
I was very fit & heathy before the op & i have a supportive husband & children which really helps.

Sarah the procedure is a tough one am not guna lie so dig in. Keep the long term & summer in your mind and good luck.

Hope this helps.
CJ 😊


Its tough Sarah im not gunna lie to you but i am totally overwhelmed by what Mr Williams had been able to do for me.


Member
Posts: 5
Registered: β€Ž17-07-2016

Re: Diep reconstruction

Thank you CJ have looked up the Bosom Buddies group and I’m going to try to make it to the meeting on Wednesday work permitting, feel that the input could be beneficial to me as the tattooing is something I shall be having in the future.

I wondered what you suggest I take to hospital above and beyond the basics of pj,s and toiletries. 

Did you feel up to having visitors on the day of surgery .

On a practical note how soon were you able to get back to day to day activities , I am sole career for my elderly mother and whilst she is hopefully going into respite care whilst I’m in hospital I wonder how quickly I will be able to get back to looking after her .

Sarah

Member
Posts: 291
Registered: β€Ž01-05-2012

Re: Diep reconstruction

Hi Sarah,

 

Waiting when you just want to get on with must be frustrating but probably for the best to let things settle following treatment πŸ™‚

My diagnosis was Oct 14 and treatment finished in May 2015.

So my reconstruction was delayed by choice. I was offered the reconstruction at the same time as the mastectomy but I declined as it would have delayed chemotherapy and I just needed to get on with that ASAP.

 

My reconstruction was done by Mr Williams and I am completely gob smacked by his genius not to mentioned that a kinder, more caring person  I could not wish to meet.

 

You will be in safe hands at BRI. The plastics team are outstanding and although the hospital is busy I found the care to be the very best.

 

I could go into lots of detail here Sarah, but would rather ask you if there is anything in particular you want to ask me I am happy to reply.

 

Also wondering if you know about the Bosom Friends group who meet at the Cancer Support Centre behind BRI 3rd Wednesday every month? Very supportive group & several women have had recon ops & happy to discuss. The next meeting is 21 feb........ I don’t go to everyone but dip in and out depending what’s going on.

 

 

 

Hope this helps,

CJ

 

 

 

 

 

 

 

 

 

Highlighted
Member
Posts: 291
Registered: β€Ž01-05-2012

Re: Diep reconstruction

Hi Sarah,

 

Waiting when you just want to get on with must be frustrating but probably for the best to let things settle following treatment πŸ™‚

My diagnosis was Oct 14 and treatment finished in May 2015.

So my reconstruction was delayed by choice. I was offered the reconstruction at the same time as the mastectomy but I declined as it would have delayed chemotherapy and I just needed to get on with that ASAP.

 

My reconstruction was done by Mr Williams and I am completely gob smacked by his genius not to mentioned that a kinder, more caring person  I could not wish to meet.

 

You will be in safe hands at BRI. The plastics team are outstanding and although the hospital is busy I found the care to be the very best.

 

I could go into lots of detail here Sarah, but would rather ask you if there is anything in particular you want to ask me I am happy to reply.

 

Also wondering if you know about the Bosom Friends group who meet at the Cancer Support Centre behind BRI 3rd Wednesday every month? Very supportive group & several women have had recon ops & happy to discuss. The next meeting is 21 feb........ I don’t go to everyone but dip in and out depending what’s going on.

 

 

 

Hope this helps,

CJ

 

 

 

 

 

 

 

 

 

Member
Posts: 5
Registered: β€Ž17-07-2016

Re: Diep reconstruction

CJ ... Thank you very much for the reply . I am booked in for surgery on the 12th March and it is being done by Mr Andrea Favaro who I am informed has taken over from Mr Rhodes who I did see previously ... I finished all my active treatment at the end of November 2016 so I feel like I have waited an age for this op. X

yjk
Member
Posts: 12
Registered: β€Ž09-01-2016

Re: Diep reconstruction

[ Edited ]

Hi Sarah, I had my DIEP surgery 4wks ago and my experience so far is as follows:

 - meds: I was discharged after 7 days with codeine, paracetomal and ibruprofen however I stopped the codeine immediately as it was causing constipation...as well as senna tablets one of the surgical team recommended eating kiwi fruit, which really helped (apparently other fruits are too bloating).  Since then I've been coping fine with any pain by taking the paracetamol and ibruprofen twice a day.

 - bras/underwear: I was told by my nurse on the plastics team at the Royal Marsden in London that I would need to wear high-waisted support pants and a front fastening maternity/sports bra post-op.  However when it came time I found even trying to get the support knickers on so painful my surgeon said I didn't need them and that if you're a "smaller" build there isn't a need for the support pants (although I'm guessing every surgeon has his/her own protocol for patients).

 - wound care: once discharged I was told to cover both the breast and abdominal wounds with brown surgical tape (flesh-coloured micropore) and to change the tape every 3-4 days.  About 3wks post-op most of the wounds were healed sufficiently to begin massaging them with a basic moisturiser (I used Aveeno).  However, there is a small area at the centre of my abdominal wound which is stubbornly refusing to heal (I've been back to hospital a few times to get this looked at) - apparently it's not uncommon and tends to happens if the surgeon has maxed-out on the amount of tissue they've taken.

 - I found I only started walking straight and upright about a week ago (3wks post-op) as before this it was too uncomfortable to straighten up, so don't worry if you're still walking around like a little old lady a few weeks post-op!  

 - The first week out of hospital is the hardest physically so don't be surprised if you're not doing anything more than moving from bed to the sofa and back again.  It's important to take things very easy - I live on my own and even though my mum came to stay with me for that first week it was still very daunting being home initially.   4wks post-op I'm still not supposed to be lifting/carrying anything heavier than a 1.5l bottle of water, which is very frustrating but you learn to adapt.

 - Before you go in for your op do make sure you've prepared your home for your return - plenty of pillows in position on the bed to prop you up; a rolled up towel to help when coughing/sneezing; items that you use regularly within easy reach/waist height; if you have a walk-in shower get a cheap perching stool to sit on when showering (i found that very helpful during my first week home)

 - Arm exercises: do do these as religiously as possible as it's the best way to avoid muscle tightness or cording.

 - If work/family life allows, do take as much time as you can to recover - it's easy to forget this is major sugery not just a "boob job".  Pre-op I naively told my employer I would aim to be back in the office in 4-5wks; however it's very clear to me that I will need more like 8wks before I can even contemplate work.  I was told I'd be fully healed in 3mths and my body will feel like my own again by 6mths.

 - Depending on how much tissue your surgeon is able to harvest there is a possibility of needing 1 or 2 smaller "top-up"/refinement procedures 3mths post-op.  I've already been told I'll need this as I didn't have enough tummy fat to fill out the breast (and I didn't want an implant) but that the procedures are day surgeries/overnight stays.

There may be times post-op you feel weepy or dispondent (I certainly did about 10days post-op) but it does get better and means you're another step closer to putting all it behind you.

Yasmin x

Member
Posts: 291
Registered: β€Ž01-05-2012

Re: Diep reconstruction

Hey Sarah,

I had my deep flap reconstruction 17th Jan at BRI and happy to say that plastics team at BRI are truly outstanding in every way.  I am overwhelmed by what they have been able to do for me.

When are you having the op?

 

CJ

 

Member
Posts: 5
Registered: β€Ž17-07-2016

Re: Diep reconstruction

Thank you for your response and I hope that you are doing well ... I’m having the operation at Bradford Royal Infirmary, West Yorkshire, feeling very apprehensive but really appreciate all the advice it certainly helps me to feel more prepared. Sarah x