Hi everyone
I shall be having a bilateral Diep next week and am having a bad attack of cold feet. I know it is what I want but I am worrying about the flaps failing, infections setting in etc. My husband feels that I should not have the surgery if I feel like this. However I feel that it is probably normal to feel scared before major surgery.My Mastectomy and lymph node clearance was the only surgery I have had and I was a quivering reck before that.Any advice would be gratefully received.
Hi Cora123,
Welcome to the BCC discussion forums, you’ve come to the right place for support as the many informed users of this site have a wealth of knowledge between them.
While you are waiting for replies I’ve put for you below the link to one of BCC’s publications ‘your operation and recovery’ which I hope will help you. If you need to talk to someone in confidence then the BCC helpline is there for you. Calls to the helpline are free, 0808 800 6000 lines open M-F 9-5 and Sat 9-2.
Publication link:
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/100
Hope this helps. Kind regards
Jo, Facilitator
Hi Cora
Can totally understand how you are feeling at the moment. I had my Diep in April and am absolutely over the moon with it and throughout my surgery and recovery have had the support and friendship from others on here.
I started a forum entitled Diep April 18th (or something similar) which could hopefully answer any questions you have. If not ask away.
Cheers
Anne x
Hi Cora
First of all welcome and good luck for next week. Boy have you brought back some memories when you say how scared you’re feeling. I had mastectomy and immediate DIEP recon in May and had never had an operation in my life. I was terrified that ‘this was it’. For me, the terror was of the anaesthetic (let alone the ‘2-in-1’, 8 hr op I was about to have!!) Totally understand your fears, ‘will the flap/s fail’, ‘infections’ etc. Of course, no-one can guarantee 100% that these won’t happen but the failure rate is so slight and the results from DIEP are definately worth it (my opinion of course!). Pain management is excellent (almost 'what pain?), more discomfort than anything. Infection control should be ‘red alert’ at the moment (swine flu etc) so possibly the best time you could go to ‘theatre’ and the nursing staff should be using the hand gel like their lives depended on it!!
Do have a trawl around the threads (there are a few DIEP-related discussions). Totally echo what Anne says about friendship and support. You can natter away on these and ask every question possible and someone will usually be able to give you an answer - and it doesn’t close at 5pm or weekends!!
Good luck and I’m sure you’ll be fine but if you still don’t feel happy (I’m not on about last minute jitters, I mean really not happy) to go ahead then remember, you don’t have to. YOU’RE IN CHARGE of this, it is your life and YOUR operation and you could reschedule if necessary. (Sounds like hubby is a good support too!). Oh, & at the risk of sounding cliche, the waiting before results/ops for most of us has been the hardest part emotionally/psychologically.
All the best and lots of love. Cathy x
Thanks for your replies.
I looked at your post Anne. Lots of replies and information which I am finding very helpful.
I too am worried about the anaesthetic Cathy. I will be having sixteen hours of surgery as it is a bilateral DIEP. Two surgeons will be working on me at the same time so they are hoping to bring the operation down to about ten hours.
It is good to know that I am not on my own in the way I feel. I do know that this is what I want. I had my mastectomy over a year ago and life without breasts is definitely not working for me so I have my answer but it doesn’t stop me being worried.
Love C x
Hi Cora
I’m so glad you’ve been able to decide on the operation. I was told by my PS that she could do bilateral op in 10 hrs. There were 2 surgeons on the job for me (mine was 8hrs mast + immed recon) so hopefully they’ll be able to bring the time down to 10hrs. I guess the upside is that the 8/10/however many hours may as well be 2 minutes for all you’ll know about it. Like you, although life would have gone on without breasts, it’s not one I would have been happy with. I hope you’ve got help for the first week or so when you get home. Quick tip (loads more if you want them!), take a mini fan as they keep you VERY warm (used a ‘bear hugger’ - like a thin lilo which blows hot air over you - nice) to keep the ‘flaps’ happy, altough some hospitals just give you loads of bandaging.
Ooops, I’m waffling and it’s bedtime. Lots of love. Cathy x
Cora
As long as you have seen the results your surgeons have already produced, and as long as they have given you ALL the information you should have then I’d be sitting back getting excited and not scared.
It’s a big op - where are you having it done?
Good luck
Hi cora, just read your bit about your op next week and wanted to say that im sure you will be fine! i had mine last year and have been fine with everything so far! no pain at all after just a bit uncomfortable,only needed paracetomol.my op lasted 13 hrs and i am going back in oct to have them reduced as i think they are too big!! you will always find help on here,i have come back to this site as have just had ovaries out on mon to reduce cancer risk and i got lots of advice again,you can always rely on the ladies who come on here! take care,where are you having the op?
Morning ladies,
Had my check-up with the PS yesterday (am 5 weeks post op) and don’t have to go back again until Feb 2010, they were really pleased with me and will discuss any adjustments I may need and nipple recon on the next visit.
The nurse gave me a certificate for another 2 weeks (they are not allowed to give up certs for longer at my hosp) and said ‘Hopefully you’ll be able to go back to work then’ but that will only be 7 weeks post op and I have a very physical job. I personally want another 4 or 5 weeks off to make sure I am in tip-top (as if!) condition. Do you think I am being reasonable? I know ultimately that if really isn’t down to the nurse to say how long I should have off, but I’m a bit worried now incase they think I’m swinging the lead! Please let me know what you think!
Lots of love to you all,
Tracy xxxx
Hi Tracy
I’ve sent you a reply on the other thread - I’ve been a right little nag - sorry(!), but 7 weeks definately too soon and it would be a crime to scupper all your good healing by rushing back (also remember the breast wounds may be OK and stomach scar healing, but the inside has to catch up too!), it’s a big old op this DIEP business isn’t it?! I pulled ‘something’ last week (that was my 12th post op week) and that was only pushing gagage (up&over) door onto a latch. Lifting, for me, started to be OK at around week 10 and I think I’ve nearly got full lifting capability now (week 13). That’s just me, I may be slower than some. I saw an occupational health doctor today about returning to work and he won’t let me return until 24 Aug (week 16) and even then it’s a ‘staged return’ for 4 weeks to make sure I don’t bite off too much too soon. I work for NHS so luckily they take sick/ops seriously and I hope your work are good to you. You do sound as though you’re doing pretty well though.
Lots of love. Cathyx
Hi Cathy,
Thanks for your reply, I do feel a lot better now. Of course, you are absolutely right about the inside of the operation sites healing properly - I would imagine this does take a lot longer.
I will definately ask for a staged return and maybe do 3 days a week and for shorter hours within those days. If I had gone back after just 7 weeks, I would be starting just as a lot of new events are being set up (I’m a Visual Merchandiser, used to be called a window dresser!!) and I honestly don’t think I could do it.
Thanks again Cathy, you have been a great help.
Have a lovely evening,
Love,
Tracy xxxx
Hi everyone
It’s really good to be able to talk to you all like this. I have just got back from buying some button through nighties. I made sure that they were cotton. Apparently the room I will be in at the nospital will be like a furnace. I am not looking forward to this as I had not been through the menopause when I was diagnosed but the chemotherapy induced a premature menopause. I am on Arimidex to stop me producing oestrogen and am having hot flushes galore.My face perspires and sweat trickles down my back whenever I have a flush(sorry if this is too much information). A woman I spoke to some time ago who had a DIEP at the same hospital said that I would not be allowed a hand held fan as the whole point is for me to be hot. This will not be good for me as I don’t like heat anyway and would much rather be freezing cold than too hot.
It’s good to hear that your op went well zsazsa.
I have seen some DIEP’s done by my surgeon Regina. The results were fantastic. I know that I should be excited especially after so long without breast but I suppose I still think about what could go wrong.
I am glad that your bilateral op went well Cathy. The more good stories I hear the better I feel.
C x
Hi Cora
I’m sure they would let you take in a face fan (I had 3 with me which gave the nurses a laugh (and about 16 batteries as I kept wearing them out!!) The tiny hand held fan blowing on your face will not interfere with the flap. Some people are kept in rooms which are extremely hot and others (like me) had a ‘thin lilo which blew hot air’ placed on them!! The fan would only be a problem if you directed it at your breast ‘flap’ as this is the bit that all the fuss is about and boy, will you get to know about just how important that little ‘flap’ fellow is!! Sorry to bang on but without a fan, I would have been passing out so do check with ward.
If you think of any questions, fire away.
Wishing you every bit of luck for an excellent result.
Lots of love. Cathy x
I’ve enjoyed reading all the comments. As ever, talking to members of BCC really helps to prepare for things.
I’ve now got my date for my DIEP - go in 21st September and operation on 22nd. A bit of time to prepare and also get on with life before it all!! I’ve been warned that it could be cancelled last minute.
I’m contemplating the recovery period but am so excited at the same time. I was diagnosed at the end of November 2007 and have taken a rather long, circuitous route!! To now see the end with the wonders of plastic surgery is an absolute joy!
Nearer to my surgery date I’m sure I’ll be asking lots of questions but in the meantime, thanks for all the comments both on this thread and the other one!
Take care all.
Gill
Hi everyone
Thanks for the advice about the fan Cathy. Like you I know that I would be passing out with any excessive heat and so a fan would be the only way to get me through. I have been thinking about this and will take some fans in with me. If I get told that I can’t use them then I haven’t lost anything but it could make things a lot more comfortable. If you have any other tips then please let me know.
Hi Gill. Your surgery time will fly by.At one stage it seemed ages until my surgery then we went on holiday and the time has gone so quickly. I can’t take in that I am only days away from having reconstruction. I wish I could feel excited about it but I feel very scared. I was diagnosed around the same time as you but had a lot of treatment. Good luck!
C x
Hi everyone
Cora - tips eh? Well, since you ask (some may be useful, others …?!)
Apart from face fan (a must), take your mobile phone (I was chuffed to bits that I could take mine & saved a fortune on hospital phone. Take money for tv (if they have one). I got one of those ‘grabber sticks’ (the ones that litter pickers use). You can get them really cheap with rubber bits on the end that can actually ‘hold’ cans etc (really useful for getting milk out of fridge as no way I could bend down for a couple of weeks - also great for reaching up, tins etc). Oh, speaking of tins (bear in mind, I’m on my own), I put loads of tinned soup/veg at waist height for ease & loo rolls etc. I also had shopping delivered from Tesco - still do now as I’m ‘converted’. I was advised I shouldn’t lift anything heavier than a kettle and that proved true for me. You’ll know if you’re starting to overdo it as your tummy will give you gip. I took PJ’s in but in the end, lived in hospital gowns as there was some leaking from drain sites (you’ll have a few drains) and I didn’t want to take home PJ’s with yuk on them (you’ll know if you’re ‘leaking’. Oh, speaking of ‘leaking’, I expect you’ll know you’ll have a catheter for a few days. I was horrified at that at first but boy, are these things fantastic! I amused myself by drinking myself silly (only water, honest!) and astonishing the nursing staff with the amounts … sad maybe, but kept me amused!! You may well have ‘pumping boots’ to keep blood flow while you’re not moving about but they’re OK.
Won’t rattle on for now (like I haven’t already!) or I’ll send everyone to sleep! I’m sure others can throw a few tips your way. Feel free to PM if you need to know any other bits & pieces.
Good luck and I hope you have excellent results. Lots of love. Cathy xx
Thanks for the brilliant tips cathy
I wondered if I would be able to lift a kettle as I shall be on my own during the day from about day 12 and can’t survive without a cup of tea …or three. How on earth did you manage on your own? I am off to buy some hand held fans today and the internet shopping advice is good too. How was all your belongings whilst you were having your op? I shall be away from my stuff for a long time and I am having my recon a long way from home so my hubby can’t bring me in things after the surgery. Everything I need I will bring in with me. I said that it would be a waste of hubby’s time off for him to stay with me whilst I am in hospital. Did you ask the nurses to look after your mobile? Nothing else I would be bothered about losing.
C x
Hi Cora
Don’t worry too much about your belongings (my mobile was my ‘lifesaver must-have’ too! I used one of those small cases on wheels - you’ll need to have this carried out remember!). I was taken from one ward to the op and then put back to continue recovery on another ward so my stuff had to ‘follow’ me. I did ask the staff on duty that morning about my stuff and they promised that it would be there. If there are a lot of folk about, I’d ask them to put you valuables in the ward office.
I was ‘evicted’(!) on day 9 and yes, it is tricky on your own (hence ‘grab stick’ with rubber suckers on - another lifesaver as if you drop something on the floor, you won’t be able to reach it easily without help. You’ll be able to move (albeit slowly) around the house. You’ll see what I mean about lifting things. I had to put small amounts of water in kettle to keep weight down, was amazed at how little I could lift without upsetting tummy wounds but this will get better over the weeks. We’re all different, some will heal quicker. Also, I phoned doctors surgery and asked for District Nurse to come and check/change dressing for 1st 2 weeks. Although I didn’t have dressings to start with, I had Mepore dressing strips put over tummy scar when I came home for the 1st 2 weeks to protect it more than anything. Oh, another thing, have you got some nice ‘sexy’ support knickers?! Some hossy’s provided ‘binders’, also front fastening (if you can get one & without seams, you’ll be doing yourself a favour). As for online shopping, I still do this. It costs £3, they do all the lugging (and when I couldn’t ‘unload’, they did this for me), sorted!
I’ll shut up for now but if there’s anything else you think of …
Lots of love. Cathy x
Hi Cora,
I took most of my belongings in hospital with me (felt like it anyway when I lifted my case!) and they were perfectly safe while I was in theatre. Of course, I didn’t take any credit or debit cards in with me, just a few pounds in cash. But my handbag, mobile phone and Nintendo DS were locked in my small suitcase.
Hope all goes well for your op, I had my DIEP 6 weeks ago and am doing really well.
Good luck,
Tracy x
Tracy, you commented earlier about going back to work. I was told I’d need at least 3 months but in reality it was over 4 and then I phased my return. If the hospital won’t give you the certificate, what about the GP? Mine was really good at signing me off for weeks at a time. I think you’re being very reasonable to want to go back in ‘tip top’ condition.
take care
fantan