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Mastectomy with DIEP reconstruction in September

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Re: Mastectomy with DIEP reconstruction in September

Hi Ann Marie

so glad that you are getting closer to getting your op sorted. You shouldn’t have to wait too long now if you’re liaising with just one surgeon. As for missing out on a tummy tuck, just think how much stronger your belly will be than ours! I have yet to see my belly scar as it’s bound up with MicroFoam and I’m waiting on an appointment with the plastics team to have it removed (ouch). Even though they don’t remove muscle the surgeon still has to cut through it in places so it won’t be as it was, plus of course the scar area will be numb. The waiting for appointments and the op itself was definitely far harder than life is now, so much stress has been taken away. It must be so much harder for you as you are a mum with a young family who has the children’s needs to deal with too. Let’s hope you hear really soon.

 

Wendy, I’ve got an appointment with the breast team for Monday 30th September so I’m guessing that will be histology results day..... My boob looks ok, rounder and flatter than the natural one but still has a dressing on so difficult to see the whole picture. Are you happy with your shape?

 

I slept for 7 hours last night and even managed a car ride to our local boot sale this morning. Hubby stayed with me and did all the picking up, lifting, carrying, etc. I got home and felt very tired so had a nap this pm. Just can’t do too much, however much I want to, but lovely to be outside in the sunshine.

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Re: Mastectomy with DIEP reconstruction in September

Thanks Wendy .. I am meeting my cancer surgeon Monday .. he originally said 4th October so I don’t know  if that still stands but I imagine if it’s different it won’t be too long afterwards .. I am ok with that as I had got into a mindset of November so if it’s October I can go forward .. I also feel better as I liaised with a nhs approved 3D nipple artist who’s work I have seen so I hope to get some symmetry via her next year after what I guess will be a reduction to the other side .. feel a bit daunting to think of a few ops but it’s still probably the right path for me ... well done you ladies post surgery .. I am a little gutted not to be getting a tummy tuck ! But I know it’s a big journey for healing too .. at least with this weather there can hopefully be some time in the garden x

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Re: Mastectomy with DIEP reconstruction in September

Hi there!

Julia - Congratulations! Fantastic news that you’re now home and without drains.  I hope everything is healing well and that you’re happy with how your new boob and tummy scar look so far.  Sound advice from your hubby to rest. It’s difficult, but hopefully you have support and are managing to let other people look after you -easier said than done - and that you’re enjoying your own cool bed!  I hope you’re managing to get into your garden to stretch your legs and breathe fresh air after being cooped up in your hospital hot room. 😎

Have they given you any follow-up appointments yet?

 

Ann Marie - you sounded so much calmer in your last message.  It takes time to sort through everything you’re told and everyone’s circumstances are different.  I’m so pleased that you’ve been able to make the decision that feels right for you and your family and that will have taken a huge weight off your mind.  It’s very clear from reading some of the posts on this site that there’s no set route through this and that the direction can easily change from what’s expected. Have they indicated a timescale for your surgery? 

 

Wendy. X

 

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Re: Mastectomy with DIEP reconstruction in September

Glad to hear you are home ... the drains thing is good to be gone .. I had one last time for a week at home  .. I was talking to a friend who used to be a nurse and she was shocked how things like that have changed as years ago a district nurse would have been involved !! Sounds like great advice from hubby .. probably for a few days .. I know you have to walk around a bit too ... I made a decision last night to have the implant surgery as I think the clot risk is too high for me and I have young children .. feel better for a decision .. this cancer journey is certainly a roller coaster of changing paths !!!  Xx

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Re: Mastectomy with DIEP reconstruction in September

Hi Ann Marie, I can see that you have some very difficult decisions to make. There are a number of risks with any surgery, as I discovered when I was given a list of around 20 of them when signing my surgery consent form. I really hope that you are finding one or two options are beginning to stand out and you can begin to make decisions.

 

Ladies, just to let you know I came home yesterday evening and it’s great. The last remaining drain was removed although there is still a little leakage. I have to wear the abdo binder and high impact bra day and night for several weeks. Under strict instructions from hubby to just lay on sofa today.

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Re: Mastectomy with DIEP reconstruction in September

Hi Julia and Wendy , I hope Wendy that you are feeling better .. I think anaesthetic takes its toll and the whole cancer thing is stressful ... I had reflexology at breast haven today which was amazing and I left feeling a lot more relaxed and clear .. my Macmillan nurse has been good and did spend and hour and a half with me last week going through pictures and options .. she was in the meeting with my surgeon yesterday .. she’s clearly pro tummy surgery for symmetry .. I asked her why he was on about using my tummy muscle .. the leaflet he gave me spoke of all the tummy options .. she said they often decide post angiogram but I wonder if he had a sense with my body that was required or he is so busy he didn’t want me to be keen .. he did say well they got the invasive cancer out so there’s no rush with the in situ as if he hardly thought it worth addressing .. and made me feel I wouldn’t be a priority .. but it was the blood clot risk which may be the factor that sways me as my father died from one .. My mother had one from radio therapy and my brother has factor 2 mutation and a clot 2 years ago .. despite being fit .. so I may be above average risk quite a bit ..he did say I could consider it later so I may have an implant and see how it goes .. I didn’t have enough flesh on my back and they didn’t offer another option in my area .. but the blood clot risk would be there with all 8 hour surgeries .. and the micro surgery may need good blood flow .. but I can see the results are superior and understand why people choose it .

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Re: Mastectomy with DIEP reconstruction in September

Hi Julia

Thank you. I do feel better and stronger today. I think I just let a couple of things get to me yesterday and was a bit teary and, I think angry, at this whole thing. As you say, we’ve been through the works from diagnosis to surgery and I really hadn’t thought beyond that so it feels surreal to be waiting for results. 

Hope all goes well today. One step at a time, eh?

Wendy. X

 

 

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Re: Mastectomy with DIEP reconstruction in September

Hi Ann Marie

I just caught up with the last couple of messages and agree with Cornishmum. My preference for DIEP was largely because it wouldn’t compromise any muscles.  After my meeting with my plastic surgeon, I was given an appointment with the Breastcare nurse about a week later. She talked me through everything that had been discussed, as well as practical issues and what to expect after the surgery-  and I was able to ask questions having had time to think. I was with her for over an hour and it was incredibly helpful and reassuring. If you haven’t been given that sort of follow-up, would you be able to ask for it?  I took someone with me.  I think, for peace of mind, you have to feel that you’ve been able to make an informed choice. Failing that, I would agree that you might consider asking for a second opinion if you feel that might be an option for you.  

My surgeon did say that he would remove a small part of a rib, I think in the centre of my chest, to access blood vessels to connect to the new flap. This was all done through the same mastectomy incision so nothing is visible. I think some surgeons connect under the arm instead. 

I was also given nippy little blood thinner injections to avoid clots. 

I feel for you, but as Cornishmum says, it’s worth exploring every avenue - for your own peace of mind. 

Love

Wendy. X

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Re: Mastectomy with DIEP reconstruction in September

Hi Wendy

I think I have missed this message. I’m so sorry you had a bit of a wobbler yesterday and yes, I guess all the excitement of coming home eventually calms down and we try to carry on with our lives. I hope you are getting plenty of support. You still haven’t been told the news you long to hear and that effort to wait is surely putting a strain on you. For something that we’ve been told is early stage breast cancer, we’ve really been put through the works and had treatment in line for invasive cancer except no chemo or radiotherapy, but we don’t know if that will change. It is tough. 

I sincerely hope you have a better day today but, if you’re still wobbly, don’t feel bad about it. I know sometimes how it just catches you unaware, how little, sometimes unexpected, things trigger those tears. Better out than in!

Julia

 

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Re: Mastectomy with DIEP reconstruction in September

Hi Ann Marie

i really do feel for you after your visit to the plastics surgeon today. If I’m honest, it wouldn’t be news I would want to hear. Aside from your family history of blood clots, his (?) preferred choice of a TRAM flap means that he would take an area of muscle from your stomach whereas the DIEP flap avoids this. I know I’m no medic but it seems an odd choice to take away muscle that doesn’t need to go. Did he say why a TRAM flap was preferable to a DIEP one? And no, there was no mention whatsoever about a rib bone being removed. There are other alternatives, such as taking tissue from your back or buttock, thereby avoiding your stomach area, but it would depend on how much tissue you have available. I know you won’t feel happy about further delay but is there any way you would either consider getting a second opinion or look elsewhere for treatment?

I'm on blood thinning drugs at the moment, it’s just part of the care I’m getting with this treatment so it would be standard practice for you to have this too I am guessing.

I really hope you get some answers. You must feel your options are narrowing but it’s worth pushing every avenue to its fullest.

Sending you lots of hugs,

Julia

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Re: Mastectomy with DIEP reconstruction in September

Hi Cornishmum .. sounds like it’s going well and you have some sturdy dressings ! Well done !! You will be relieved to be through this ! xx

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Re: Mastectomy with DIEP reconstruction in September

Hi so I saw my consultant and he seems to do the tram flap he was talking about today and he scared me with it .. he thinks it’s a significant risk for an 8 hour op with me having a family history of blood clots .. also he said I had a gap in my peck muscles from pregnancy so could end up an odd shape if the take the lower fat and the higher area sticks out ... also he was on about removing a rib for the procedure .. is this a procedure you had ? .. I was left a bit bewildered ana May have to go implant after all

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Re: Mastectomy with DIEP reconstruction in September

Hi Julia

I can almost picture you flinging open those windows and breathing in fresh air!  Such a relief after the heat.  And I sooo remember just wanting to shower and wash my hair to feel fresh and normal. Fingers crossed for tomorrow, but much better that the drain does its work than you have a problem later - even if you do have to wait that little bit longer to get back to your own bed.  And kudos to you being a real life person for the newbie med students. They were probably terrified! 😂

I didn’t have an abdo binder or tight knickers, just a simple dressing and loose comfy ones that wouldn’t rub or press on wound. The nurse was very matter of fact that they expected bruising and, honestly, it hasn’t been bad. Just different approaches.  

I have found massaging my tummy and new boob more difficult than I expected as it’s still numb and doesn’t feel like part of me, but I’m just trying to remind myself that it’s early days still.  We’ve only just met! 😜

Wendy. X

 

 

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Re: Mastectomy with DIEP reconstruction in September

Hi all

i was quietly hoping that I might be allowed home today but one of the drains is still producing too much fluid. Two drains have been removed today leaving just this one more. It is looking likely that I can get home tomorrow. I was allowed to have the heating off today - 🤗🤗🤗🤗 - so I threw open the window and breathed in deeply. Sooooo good. Some talk about a bra fit session but hasn’t happened yet. I was asked if some new med students could do an abdo check but I don’t think the tutor realised I’d be all bandaged up (I think he assumed just a mastectomy) but that passed half an hour anyway!

I feel so much better than the weekend. Just thinking about the morning of the op and the 48 hours after I woke up makes me cry but how different I feel now! I do need some decent sleep so will be glad of my own bed. Wendy, you are so right, the constant flow of people and noise is very tiring. I had one visit per hour from 9pm to past 2am last night and got by on three hours of sleep.

I’m currently in an abdo binder but was wondering if I will be wearing that plus the big tight knickers? And how long for? I can see what will be on my Christmas wish list!  

Right now, I would just love a shower and a hair wash 🚿🚿🚿🚿

 

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Re: Mastectomy with DIEP reconstruction in September

Hi Julia

How are you feeling today? I hope you’re going from strength to strength and your wounds are healing well. Are you free of all the drains yet and have they said anything about you getting home?  

I’m having a bit of a wobbly day. I think some of the tension and anxiety of the last few weeks is catching up and the euphoria of getting home is waning. I suppose it’s to be expected. 

I’ve pretty much finished with the painkillers. I’m still taking a couple of paracetamol first and last thing and I am definitely sleeping better than I have for ages. 

Sending you hugs

Wendy. X

 

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Re: Mastectomy with DIEP reconstruction in September

Hi everyone!

I agree that it is completely overwhelming at times. I think we have to just try to accept that we feel what we feel and not try to fit in with our own - or other people’s expectations.  It is so hard to know what’s coming next or how we’re likely to react. Actually, we should just feel proud of ourselves for doing this and living it!

I found the noise, constant checks and busyness of the hospital tiring and preferred to have my door closed much of the time.  At the clinic yesterday, everyone was lovely, but I had no idea how many people I would see or how long it would take. I even chose my clothes so that I would look as unlike a patient as possible. It was almost a defiant taking back of control. I was glad to get home and back into my big, comfy knickers though (never thought I’d admit that! 😳). I have another appointment in a fortnight so hoping to hear about the pathology then. 

My tummy wound is a bit red over the middle section and I’ve to keep an eye on it and avoid massaging that area. They also advised continuing to sleep on my back so the V pillow was a useful investment!

Vicki - I think I saw your post on another thread. Re products, I reacted really badly to the adhesive used at drain sites. In the shower I’m ok using Cetaphil which I already use on my face - although I mostly just let the water run over any tender/ scarred areas and not directly under the jet. I’ve been told to use E45 for massage and it seems ok so far. They also gave me Piriton antihistamines to take the itch out. It’s great to hear from someone who is a bit further down the line with all of this. 

Julia - so pleased that things are going well. It sounds like you are going from strength to strength! Brilliant news!  Every little bit is another step towards putting this behind you. 

Ann Marie - I hope all goes well for you tomorrow. I’ll be thinking of you. 

X

 

 

 

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Re: Mastectomy with DIEP reconstruction in September

Hi Vicki

thank you so much for getting in contact and, yes, I would love to know how you are finding things. TBH, this does get overwhelming and it’s hard to picture life a bit further down the line. My focus at the moment is getting out of hospital and, like Wendy says, knowing you are out of the woods and can see the trees clearly behind me. Do you feel you are near that stage yet?

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Re: Mastectomy with DIEP reconstruction in September

Hi there

I had my masectomy and reconstruction on 15th August so I'm about a month into my recovery. If you'd like to chat then I'm here... No problem at all x

 

I hope it all went well last week and you are on the road to recovery

 

Take care

Vicki

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Re: Mastectomy with DIEP reconstruction in September

Hi everyone 

Thank you for your kind messages! Leonie and Ann Marie, I understand how you must feel about the waiting as it becomes your focus in life and it’s very hard to think about things that might be going on elsewhere. It will happen and you will be able to move on but it certainly teaches us patience.

Wendy, I’m glad you got some feedback from your visit yesterday but you have also been caught up in the waiting game - when do you expect to hear? Hope your wounds are healing well.

I'm based in Cambridge so at the big teaching hospital here. Can’t fault the staff, they have been lovely. Being assessed 4 hourly now which has meant I can get some sleep but looking forward to leaving this hot room for a bit.

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Re: Mastectomy with DIEP reconstruction in September

Hi Wendy .. good to hear your updates .. I hate the waiting for results stage .. seems to be so much part of this journey .. I feel I have such a long way to go ...but it’s good to hear of the steps beyond this one and progress being made xxx

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Re: Mastectomy with DIEP reconstruction in September

Hi Cornish mum .. that does sound an ordeal you have had but through the worst of it .. are you in Plymouth .. forgive me if that’s an inappropriate question .. Iran just that I know they cover a large area and I am originally from the south west myself .. I have a friend that works for the bosom pals group at the hospital .. anyway .. may not apply to you .. i am up north now .. I hope things settle quickly I guess although they check on you regularly there’s a reassurance with that you are getting lots of care .. good to hear your update xxx

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Re: Mastectomy with DIEP reconstruction in September

Hi Julia

It’s brilliant to hear from you and it sounds as though you’re doing really well and I’m so pleased to hear that you’re feeling relatively pain-free! I agree about the coughing and they’re so keen that you do it. I think it opens up your lungs after the anaesthetic.  It’s hard to rest when the checks are very frequent but it gets easier and easier. 

It sounds like you are being true to your work about mobility - and at least it’s an escape from the heat. Hope you’re starting to get more sleep now. I’ve been much better since getting home.  I bet you can’t believe what you’ve just been through and how you’re feeling already!  Do you still have any drains in?

 I had my first post-op clinic today. A bit chaotic as the fire alarm went off and at first we weren’t allowed to leave the room - then were evacuated.  Luckily, I was done and dressed by then! They seemed happy with scars and I’ve to start gently massaging except the central part of tummy wound as it’s still a little fragile.  Pathology results weren’t back yet so will just have to be patient. I’m assuming all will be well, but not out of the woods until I can truly look back at the trees!

 I’m sending you hugs and hope you continue to go from strength to strength. 

Love

Wendy. X

 

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Re: Mastectomy with DIEP reconstruction in September

Hi everyone, and huge apologies for the time it has taken to get back to you all. This is my fourth attempt! I’ve written to you but hasn’t posted on the forum because of internet issues or I have had to stop because of checks and then lost what I was writing. It has been a very long, few days but feel I have gradually improved at some things but struggle with others. The op went well. I was put under at 8.20am and woken up just before 6. I was in recovery for nearly three hours and finally went up to the ward at 9pm. I am amazed that I have been in relatively little pain, definitely the worst part is when I cough. My right arm has almost as much mobility as my left.

There was not much possibility to sleep as I was checked hourly for the first 24 hours, then two hourly after that. The surgeon comes by daily to check the flap as well. I went on a walk, twice, down the corridor with the physio and a friend; today I’ve been on a walk without the machine following me around as I’m off fluids and the catheter, plus two drains removed which is great.

Bits I’ve struggled with are the heat of the room and feeling sick. Even the staff come in to the room and say how hot it is! My temperature hit 38.8 on Saturday and I felt very low. However, now that I’m allowed to walk down the corridor on my own, I shall be escaping as much as possible! As for the sickness, I’m on meds for it but have come off the morphine so hopefully it will improve.

 

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Re: Mastectomy with DIEP reconstruction in September

Hi!

Ann Marie, that’s great news that you’ve got an appointment to see a plastic surgeon on Wednesday. It must be such a relief and I totally understand what you mean about being able to explore the options.  It’s all about peace of mind, isn’t it?  Hopefully it will be the news you’re hoping for or you will at least know why it’s not suitable.  It is so difficult making these decisions and trying to make the best choice for yourself when, let’s face it, this has hit all of us out of the blue and we are dealing with so much information. I felt so many doubts- partly because it’s a bigger operation but also because I didn’t feel at all unwell. It’s hard to explain. 

Wishing you all the best,

Wendy. X

 

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Re: Mastectomy with DIEP reconstruction in September

Hi Julia Wendy Leonie .. it’s so interesting to hear how you are doing .   I hope the surgery goes ok Julia ..and wendy I am pleased to hear of your progress ..I now have an appointment next Wednesday to see the plastic surgeon so that was a bit quicker than I expected .. emotionally threw me a bit as I was in a place of doom and gloom and then whooshed into elation to think something was happening .. such a big surgery and her I think without it I would be so low .. even if they sat I can’t have it for some reason , I will be able to sleep to think I asked and not be thinking I wish I had enquired .. I am carrying quite a bit of weight on tge  tummy  area .. never thought that would ever be a good thing .. but we will see! I just want to feel balanced and feminine .. I know no result is perfect but this does sound hopeful ! x

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Re: Mastectomy with DIEP reconstruction in September

Hi!

Welcome, Leonie! Lovely to hear from you - although I’m sorry you have found yourself here wrestling with everything that has been thrown at you and having to make these hugely difficult decisions.  And thank you so much for your kind words.  Personally, I don’t feel in the least bit brave, but this conversation has been a massive support and has helped me to sort out some of the thoughts and emotions over the last few weeks. I’m so glad if other people have found it at all helpful. 

I was only offered a mastectomy as DCIS was over a relatively large area in a small boob. I do worry that the other side may develop a problem in the future as they wouldn’t be able to offer the same reconstruction options. But I’m trying to keep the ‘what ifs’ out of my head to focus on reality. 

Like you, I would have struggled with going flat and implants seemed to potentially involve more chance of repeated surgeries or further treatment in the future. Although the diep is, without doubt, a much bigger surgery up front (as it were!) I felt that once through it, I would feel clear to get on with my life. It was also very important to me that the diep wouldn’t affect muscle strength. I’m no gym bunny, but I want to feel capable of just doing stuff, if that makes sense.  I certainly feel now, one week post surgery, that although my tummy is a bit tight and stiff, I’m able to move around, sit up, climb stairs, etc without difficulty. 

I have my first clinic appointment on Monday, so slightly nervous that all is well even though I feel that this has gone better than I could have imagined. 

Sending you hugs,

Love

Wendy. X

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Re: Mastectomy with DIEP reconstruction in September

You ladies are my heroes!

The way you have quietly coped with things in your stride is amazing.

I was offered bilateral mastectomy with  immediate implant reconstruction but like you had concerns over implants...... seemed like adding more surgeries, complications and worries. The dcis was small enough in both breasts for lumpectomy so I went for that but it really worried me being given the choice at the same time being told medically the outcome was the same, it was a personal choice of which one I would prefer. One side however turned out to be invasive so I am now waiting for radiotherapy which I hadn't bargained on and seriously considered the mastectomy option again but medical team persuaded me rads was best option as only needed one side.

 

The reason you are my heroes is that despite not wanting implants due to concerns I felt it would be the only reconstruction I would ever be brave enough to do. But after rads, as it affects skin, that isn't an option should I have a recurrence so it would be autologous or flat as mastectomy is only option if I have a recurrence. I am obviously hoping I don't but both boobs were affected and it's obviously something we all worry about especially when newly diagnosed. But I also struggle with the idea of going flat.

You ladies have been honest and brave about your reconstruction experiences and shown despite the difficulties it can be done. Please know you have helped reasure me of this option and others too I am sure and I wish you continued good healing and recovery...and lovely new boobs Smiley Happy

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Re: Mastectomy with DIEP reconstruction in September

Hi Ann Marie and Julia

Welcome Ann Marie! Sorry to hear that you’re in this position of waiting. It sounds as if you have been through a lot already and a hold up because of the difficulty in finding a surgeon must be hard to bear. Fingers crossed that someone is found very soon. 

‘Billy’ looks like being a really good match in size and shape. Had a bit more of a look when I showered today. The bruising is quite spectacular!  It feels a bit swollen and tight under my arm but not painful. My boobs were fairly small and, although I’m slim, I had developed a wee, stubborn  menopausal tummy which has at least been useful. Back to a flatter profile than I thought I’d ever see again! Clouds and silver linings!😳

I think the marking-up crosses your boundaries and mentally takes you from person to patient. Your injection sounds much worse than mine. Mine was into the side of my breast. It is all exhausting and overwhelming - but it’s another step towards being cancer free. 

I will be thinking of you tomorrow and over the next few days.

Sending you love, gentle hugs and my very best wishes. 💕

Looking forward to hearing from you when you are up to it. 

 

Wendy. X

 

 

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Re: Mastectomy with DIEP reconstruction in September

Hi Anne Marie and Wendy!

Welcome Anne Marie and glad you could join our chat. Sorry to hear you are having to wait for a plastics surgeon, it does seem to vary on where one lives in the UK. I hope you get an appointment very soon or is it possible to switch hospital (though that does delay things, as I found out). Please chip in whenever.

So glad things are progressing well, Wendy, you’ve been amazing. You seem more mobile than I imagined we would be at your stage so taking great comfort from this. Can I ask, is “Billy” the shape and size you were expecting? Have you had any issues with the healing? I’ve been warned my new boob could be smaller than the original as there’s not a lot of stomach tissue to use but I don’t think it will be that bad. Will wait to see.

My cold is a bit better but was still worried about the decision to operate or not tomorrow. I had two appointments today to be marked up and injected. After taking my temperature and listening to my chest they decided I was ok but final decision rests with the anaesthetist tomorrow morning. I had a junior doctor mark me up, supervised by the surgeon and consequently I have more lines on me than perhaps would be normal. I just hope they use the right lines! I had a big gap then before my next appointment - that injection I really felt, right in the areola, ow! I admit I had a wobble then as I could see all the lines on me and I felt overwhelmed about it all. I feel really tired right now. Like you, Wendy, I feel I just have to accept it, and want to get on with it now.

 

Going in tomorrow for 7am and will message you both when I’m up to it. Best wishes to you both.

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Re: Mastectomy with DIEP reconstruction in September

Should read diep reconstruction 

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Re: Mastectomy with DIEP reconstruction in September

Hi Julia and wendy .. I am a little behind you guys but just read your thread which  was helpful . I had a breast reduction on 20/8 but didn’t get margins so am waiting for a date for a mastectomy / Diego reconstruction if the surgeon says yes .. seems to be only one guy that does it in my area so although I have an available cancer surgeon I don’t have surgeon 2 .. he isn’t even free to make an appointment with me .. so I am just in a waiting game at the moment .. I was glad to hear about your surgery and journey ! Anne Marie

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Re: Mastectomy with DIEP reconstruction in September

Hi Julia

It is so hard to believe that this time last week I was spending my pre-surgery night on a hospital ward. I was actually fairly calm by then. I think I had just resigned myself to it. 

I did sleep better last night than in hospital but took badly with warmth and weight of duvet even though it’s a very light one. I am resting a lot but managed a freezer tea and cups of coffee, etc. Going up and down stairs is easier than I had imagined and I was able to walk to the end of the street and back while my mum was round. My brother is still coming in to feed cats for a few more days so I don’t have any bending. I’m glad I moved kitchen essentials within easy reach as stretching for a glass today was an immediate ‘nope!’ and I used a mug that I could reach for water!  I’ve had an occasional thoughtless moment when I’ve gone to use my left arm to push or pull something. That’s an immediate ‘ouch!’.

’Billy’ is doing well and tummy is very neat and I think will heal well. I’m particularly noticing that it’s tight whenever I stand up - but it does ease. I have an angry rash at my drain sites as I seem to have reacted to some types of tape/ adhesive. My main boob and tummy ones are absolutely fine.  The muscles up each side of my back are very achy by the end of the day. It makes washing and brushing teeth difficult but will hopefully ease as I become more mobile. 

I’ll be thinking of you tomorrow. The marking up was weirdly impersonal even though they were very reassuring and kind throughout. It was a bit of a disassociation from reality. I did look at all the black marks and mentally gulp like the cat on the Specsavers ad!  I was a bit worried about the radioactive injection but hardly felt it. My blue dye was done once under anaesthetic. 

Being able to chat like this to someone in the same situation has really helped me too.  Here’s to last minute packing, big knickers and smooth recoveries! 🥂

You’ve got this!

Love

Wendy X

 

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Re: Mastectomy with DIEP reconstruction in September

Hi Wendy!

Congratulations on getting home! So pleased for you and you must be delighted to sleep in your own bed in a cooler room. You must have really worked hard on the mobility, something I must work on too if I want to get home sooner. How are you finding things now you’re home? I’m sure you are tempted to do things yourself but trust you have plenty of support. When do you have to go back for your next appointment?

I hope “Billy” is healing nicely, as too your belly scar. I imagined the drains would be in for a couple of weeks so really pleased to hear that you’re drain free.

I have two appointments tomorrow, one to be marked up (which I feel quite unhappy about) and the other for the radioactive injection for the lymph nodes. I’m still sniffing and coughing, so very apprehensive about what they will say. My nurse friend says that if I don’t have a temperature and my lungs are clear they will probably go ahead so keeping my fingers crossed. I still need to pack but the big knickers and one bra has arrived. I warned dear hubby about the future underwear!

I just want you to know that I am so much calmer for sharing our stories and grateful for all the advice and experiences. If I can just be allowed to have the op, I reckon I can do this.

Good wishes for a continued speedy recovery, hope the down moments are few, and don’t do too much!

Julia

xx

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Julia

That’s great news about your surgery going ahead as planned- even better that you’ve met the surgeon.  Keep dosing that cold and fingers crossed it won’t make any difference by Friday!

Good news is that not only have I left the hot room, I’ve left hospital!  Made a big effort with mobility as was annoyed staff weren’t helping at all - only the physio helped with one short walk less than halfway around the ward. Took matters into my own hands and asked a couple of my visitors to accompany me on a couple of ward laps each. Then did another couple on my own. Was careful not to overdo but felt there was an improvement each time.  I have to say that the weekend staff were far more organised and supportive generally. Today I decided to try to get up, wash face and put support socks on before help was (or wasn’t🙄) offered and did another couple of laps before breakfast. Surgeon said he was happy for me to go home if I felt up to it. So here I am, boxes of painkillers by my side and looking forward to sleeping in my own bed! 🎉🎉🎉

I can’t believe how much improvement I’ve felt since Sunday morning.  Catheter was taken out last thing on Sunday - apparently they do that so your bladder can relax overnight, and last drain came out yesterday.  The Breastcare nurse checked and redressed my tummy after I had a shower today.  Said the new dressing was more for my peace of mind than because it was needed. First chance I’d had to look at it and it looked great to me. I have to say that I’m incredibly impressed with what they’ve done. I would not have believed that I would feel like this or that my boob (which I’m calling Billy in my head!😂) and tummy would look like this already. 

I’m usually a side sleeper too - maybe that’s why I didn’t sleep brilliantly, but I was propped in a semi-reclining position with the bed top raised and a pillow under my knees. It was ok and by Saturday afternoon I was starting to alter pillows and angles to suit myself. Stayed on my back though. 

I’ve had a nap and a couple of tearful moments where I’ve just felt a bit overwhelmed. I dare say they won’t be the last. 

I know everyone is different and this has just been my experience, but the anticipation really was the worst part so far. This is doable. Let me know if I can help with anything. 

Love

Wendy. X

 

 

 

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Wendy

There was another technical glitch which meant I couldn’t write earlier but it seems to have been sorted now.

How are you? How is the mobility going? I hope by now you have left the hot room and are racing down the ward! Any news yet on going home or do you feel you are not ready yet?

Well, the good news is that a breast surgeon has been found, someone I have met already, and surgery is definitely booked for Friday. The bad news is that I have developed a cold, thanks there to middle son, and panicking a little that they will say I’m not well enough to have the op on Friday. Drinking honey and lemon, taking vitamin pills, sucking menthol sweets and piling Vicks Vaporub on my chest, something must work!

i dread to think what state the house will be when I get back but only two of them about so it can’t be that bad, can it? I must resist the temptation to clear up so will have to resort to nagging (that’s when they will know mum is feeling better).

 

Are you ok sleeping on your back? I think I will find that hard as I’m a side sleeper.  You’ve done really well with all the drains coming out as I didn’t think they would come out so soon. And how about painkillers? Are you still taking them or can you manage? Are they checking you 4 hourly or has it lessened again?

 

i went to the JobCentre again this morning and have set the ball rolling to get some support. No problems this time, just have to wait for it to be processed.

 

Keep smiling!

Julia

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Julia

Yesterday was mostly good. Yesterday’s walk was probably no more than 12 yards - but felt worthy of Sherpa Tensing! I was a little stooped but not as much as I expected and having done that, I feel easier just moving about on the bed.  Unfortunately, every time they’ve  put me in a chair, my blood pressure has plummeted and I’ve blacked out. Last drain was taken out half an hour ago and they are hoping to get me more mobile today. 

I think that I’ll be in this room until I go home now. I’m also on a mixed plastics ward and I think there’s ENT as well. It can sound a bit lively out there at times!  I was talking to the nurse as she said that another lady is coming in tonight. She was saying that this option is not routinely offered in some areas in England as it’s classed as cosmetic and they are pushing to meet targets. I have certainly been very well looked after. Like you, I’ve heard of ladies being discharged too quickly and having to go back because of infections. Such a pity that there can be such a high standard of care if it’s being wasted to play a numbers game. I’m really glad that I had this option and that I took it. The anticipation was definitely worse!

I did loads of stuff around the house before I came in, too. The day I was admitted, I had to have a second shower because I’d cleaned and hoovered so much!  Threatened the kids with dire consequences if they’ve created any mess while I’m in here. Got my hair trimmed too just to make it easier to manage afterwards. The nurse who’s been looking after me at night thinks it’s hilarious that I’ve brought in my straighteners, but she’s got short, straight blonde hair and mine only has to hear of rain in a forecast to go crazy!  I would suggest taking a little hand held fan and loading podcasts or music onto a tablet if you can. I’ve not really been able to concentrate on following a proper story or drama yet. 

Let me know when you hear from the hospital and definitely find out if they have bras. It’s so hard to judge quite what to get - and if you don’t ask....!

Love

Wendy. X

 

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Wendy

hope you had a good day today. Did you manage to have that walk along the ward? How far did you get? I imagine you have to stoop quite a bit so as not to pull on your stomach. The plastics nurse told me last week at my pre op that I could do a maximum of 10 minutes around the garden when I finally make it home again, and build up from there.

i think I will have to investigate the bra service at the hospital. I do seem to vaguely remember a Macmillan stand advertising about a bra fitting service but I’m not sure if I’m confusing it with the first hospital I was at.

Will they be putting you on a main ward soon? I imagined I would be with other mastectomy patients but the focus of the ward I will be on is plastic surgery, so could be a mix of operations. There seems to be a push on simple mastectomy ops as day cases but I’ve seen some comments on these forum sites where ladies have got infections and feel that they have been discharged too soon with insufficient follow up care. It certainly sounds like you are being monitored very carefully which is reassuring.

My oldest son is jetting off to the Far East for a three week holiday as I write this. Glad he’s not around really and I’ve made him promise me lots of photos I can look at while I’m in hospital. Middle son is being taken back to uni (5 hour drive each way) the day after I go in by my husband so won’t see much of him on Saturday.

Just waiting now for hospital to call tomorrow. Thank you so much for your feedback and reassurance, I genuinely feel much more confident about tackling this week. I am sorting out jobs to do and making lists to help my husband next week, so thinking about them rather than me.

Hope you get a reasonable night’s sleep as your healing continues.

All the best

Julia

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Julia

Very relieved it’s over but it’s been ok. 

Surgeon was in again yesterday and today despite it being his days off!  Just had 2 more drains out and cannula (I think that was just a back up in case I needed fluids). They are big on drinking lots and lots of water!

Hot room has been mostly ok. Visitors have commented but because you’re lying fairly still you’re not so aware. I did feel hot at night though (situation normal!). I didn’t have a heated blanket- just a few layers of padding over new boob. Talk of putting a bra on later today after a wash. Should also be up more. 

Definitely hospital gowns at the moment. They’re untied so they just flip down the shoulder to check breast. I’m rather hoping that they’ll be more secure for my planned walk down the corridor later though!

Shouldn’t be a problem for your sons to come in. The staff have been great at preserving a little dignity even while checking dressings and I’ve had a few visitors including my son and brother without feeling exposed. In fact, had quite a lot of visitors with it being the weekend. 

Physio should start tomorrow, but she gave me some basic breathing exercises, arm and ankle rolls and tummy contractions to do. 

Really hope you gave Job Centre what for. That’s just ridiculous, and you’re right- it is expensive getting various bits and pieces. Hospital may well have bras. Nurse on last night said there were loads for ladies who didn’t have something suitable. I was also given a heart-shaped pillow which some lovely ladies make for breast surgery patients. It’s great for putting over your tummy or under your arm. 

Please just ask if there’s anything. Different hospitals will probably do things slightly differently, but I’ll help if I can. 

Big hugs back,

Wendy. X

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Wendy!

i was so pleased to hear from you! I’ve been thinking about you so much and hoping that everything went well, which it sounds like it has. You must be relieved that part is over and hopefully just a few more days in hospital before you can go home. Let me know how mobile you are getting and whether you can leave your hot room soon (not looking forward to that part - I was told three days in a very warm side room).

I’m still waiting to hear back from the hospital but when I spoke to them on Friday I was assured I would know by tomorrow. Apparently they are waiting to hear back from a breast surgeon who is currently on leave and returning Monday. I’m quietly optimistic that it will go ahead but won’t know for sure until then. I’ve ordered my big knickers and one high impact bra but will get more. It’s proving expensive!

As for benefits, well, I waited a whole week to be contacted by my nearest JobCentre and heard nothing so I did the 25 mile round trip to go there and book an appointment for next Tuesday myself. I did say a few words to them....

Let me know of useful things to take into hospital. I was thinking of my crochet but reckon my arm will be too weak to do stuff like that? Might save that for home. Sounds like I might need to take a supply of food in! Is it easier to wear hospital gowns rather than own nightwear? Have you started exercising/physio yet?

How have the family been? Are you getting lots of visitors? It helps a little when you’re stuck in a room. Another question - Is it ok for two sons to see me post op? I’m not sure with all the dressings, drains, exposure!

So glad you’re on way to recovery. I hope the healing continues smoothly and do write any time (I actually slept pretty well last night after a rough previous one).

Loads of hugs,

Julia

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Julia

How are you coping? Have you heard any more about your date?

Op went well. Went instantly from ‘just a sharp scratch’ to someone calling my name and it was all over. So far so good. Everyone seems really happy with new boob.  I have a wee look whenever they check it and scar looks very neat.  It’s a bit weird to see them press it and feel nothing.  All being kept very cosy!  Tummy scar is taped so can’t really see anything. There’s bruising but not too bad and plenty of painkillers. The worst bit is the cannula in the back of my hand - and there’s a nippy wee injection to stop blood clots. Had a bit of a low day yesterday. Felt a bit stir crazy and I think they were short staffed. I also think all the anxiety in the lead up and the physical and emotional exhaustion hit me. Better today though. Walked to the door of my room and sat up in a chair. Small steps! 🏅 Food is truly dreadful and I’ve got family bringing stuff in. Your hospital might be better in that department!

Still not sleeping as you might be able to tell from the time, but there are so many checks- particularly for the first couple of days, that day and night don’t really matter. Down to 4-hourly now. 

Hope this is all reassuring. 

Will be in touch. 

Wendy. X

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Julia

Thank you so much. I can’t believe I’m at this point. It still all feels completely unreal and today, in particular, has just been a blur! I’ve hardly stopped for breath. 

I hope you get sorted out with all your forms. You don’t need to be worrying about that as well. And hopefully you get your appointment sorted out sooner rather than later. 

I’ll be in touch when I can, but I will be thinking of you. 

Huge hugs to you too,

Wendy. X

 

Member

Re: Mastectomy with DIEP reconstruction in September

Wendy,

sending you my very best wishes for a successful op, a new boob that you’re happy with and that you’re cancer free when this is all done.

Loads of hugs. Go girl!

Julia

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Wendy

Glad you are keeping busy. All this getting ready business reminds me a bit of when you’re due to give birth - except here the new ‘baby’ is a new boob! I’m sure the sleepless nights, tiredness, discomfort, etc will be the same, just no little bundle to cuddle!

Yes, I’m feeling fed up with the delay. All I was told was that it will be before October if it doesn’t happen on the 13th. I’m guessing that available slots in the following week have already been taken so I fear the worst that it will drag on until the end of the month.

 I have done the same re photo but have just cropped the boob part. I wanted to compare the old boob look with the new. I hope I shall be very satisfied with the surgery (when it happens).

I'm currently trying to sort out finances as I’m having to resort to benefits until I go back to work. I’ve filled in a form but it has to be verified by someone at a Job Centre which is proving more difficult than you would think as I can’t contact a JC directly.

Wishing you a good day!

Julia

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Julia

You must be gutted!  At this stage, when you know it’s going to happen, you just want it to keep moving in the right direction. There’s such a big emotional element to this so fingers crossed that they sort it all out for you quickly. Had a chat with my GP this morning and she said that part of the issue is that we don’t feel unwell and are facing so many unknowns. 

A couple of friends arranged for us to go out for tea tonight which was lovely and gave me something to look forward to all day. I am finished work now and have spent the day running around getting organised and trying to make sure there are enough supplies that I don’t need to do any real shopping for at least a couple of weeks. 

At risk of sounding a bit bonkers, I took a selfie in a full length mirror wearing only my bikini bottoms as a kind of record of my real body. Made sure the doors were locked and the house was empty first! 😳😂 

Love

Wendy 

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Wendy

I was told today at pre op assessment that my date for 13th September is looking doubtful as there is no breast surgeon available ☹️☹️☹️. Just my luck....

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Wendy

really hope you’re finding some peace at nights, I do sympathise. Have you finished the course of sleeping tablets? Does it help to physically do a lot during the day - weed pulling, a long walk? I realise it doesn’t always help as you’re still unable to fall asleep. I’m like you in that I can’t drink a lot of wine but a biggish glass does make me very sleepy and I can nod off fairly easily. Sometimes I then wake up again around 3-4 pm but I’m not awake for hours. 

I assume you’re not working now? I hope you’re finding this ok and that you can fill the hours before Wednesday. I’ve been thinking about you a lot and hope you’re not feeling too down. I’m glad you have friends who have had similar experiences as it really does a lot for nerves. Although I don’t feel too bad at the moment I have a space between now and my date and lots could change as it draws closer. I had a lovely meet-up with some ex work colleagues on Friday. Only one of them knew my situation and I didn’t want to spoil a nice reunion with my news so asked the one who knew to tell the others. They were lovely about it, some hugs and a quick chat and then on with the other news. I felt so much better for seeing them.

All the best, and you’re closer to getting this out of the way!

Julia

Member

Re: Mastectomy with DIEP reconstruction in September

Hi!

Great to hear from you. Struggled to get onto forum as well. Didn’t realise that it was a technical issue- just thought I’d somehow managed to lock myself out!

Had my preop on 16th. Was pretty straightforward. Weighed and measured again. Nurse went through a vast list of medical history questions. Very matter of fact. More blood taken than seemed strictly polite 🧛‍♂️.  Although the letter said it could take a couple of hours, I was out in just under an hour. 

Meantime, for the last couple of nights, I’ve been experimenting with wine as an aid to sleep. I’m a total lightweight and 2 glasses is my limit unless I want to feel rubbish next day. It hasn’t been a great success and even the cooler nights don’t seem to be helping much. Back to eking out the sleeping pills!

I did, however, have a very long blether on the phone with one of my oldest friends who had exactly the same thing- albeit with different recon - just over 10 years ago (unfortunately, she was away on holiday when this all kicked off).  It was so reassuring to talk to someone who really understands the emotional and practical effects of the diagnosis and waiting. I came off the phone feeling much, much calmer!

Had a bit of ‘why me?’ wobble this morning - probably the result of another sleepless night and a sense of time marching on relentlessly. But as you say, this time next week....

Hope your preop assessment goes smoothly. At least we don’t have boils on our bahookies! 😜 

Hugs

Wendy

 

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Stormcloud

Couldn’t get online yesterday, I think there was a technical glitch.

Got my letter re pre-op assessment so another trip to hospital next week. Presume you’ve had yours? September is just around the corner and this time next week you’ll have got the op out of the way....yes!

You're not a wuss! Here is a wuss: someone I know (a man) was due to go into hospital for surgery on an uncomfortable boil on Wednesday. He’d taken the week off work but come the day he called in sick because he bottled out of the op! So he’s still living in discomfort and isn’t likely to get another date for months.

I'm so glad it’s less hot, sleep is better though helped considerably by the wine! Hope you are finding the sleeping pills are having the right effect. Thinking of you and grateful for the contact!

all the best

Julia

Member

Re: Mastectomy with DIEP reconstruction in September

Hi there

The wine sounds like a good solution! 🍷 I got sleeping pills from my GP with strict instructions to use for no more than 4 days. So I’m trying a couple of nights without followed by a sod-it-I-need-something night. Although the anxiety combined with the heat on Sunday was too much and they didn’t seem to help at all.  If the anaesthetist can get me to sleep for 8 hours, I’m taking him (or her) home when I’m released!

I think that getting the second opinion would at least reassure you that, horrible though this situation is, you’ve explored every option and this the right treatment for you - and you have the confidence that the hospital has those facilities if you need them.  I would have a pretty long journey to get to another hospital with the type of facilities my local one has and it would be long journeys all round for my admission and discharge and for family visiting. 

Like you, I want this to all be over- I just don’t want to think about that bit in the middle!  At the moment, I’m such a wuss I don’t even like seeing those dates on a calendar!

Sending hugs to you too. X

 

 

 

 

 

 

Member

Re: Mastectomy with DIEP reconstruction in September

Hi Stormcloud

All this decluttering and food prep helps to keep busy, it’s just been a bit too warm today to feel like doing much. A glass or two of wine certainly helps me sleep better - I normally only have the odd drink  but becoming more frequent in the build up to the op.

I’m not sure if seeking a second opinion was the right thing to do as I’m ending up having exactly the same op that the first hospital recommended, just later. I do feel that the second one really tried to explore other possibilities and I had further tests to try to avoid a mastectomy but it wasn’t to be. I’m grateful for what they tried to do. Also, this hospital has all facilities on one site whereas if I do need radiotherapy I would have a much longer journey to a different hospital that I haven’t been to before. Your hospital sounds very good, too.

I also have to prepare the chn. Fortunately one will be away abroad for a few weeks, one will be heading back to uni the day after my op so won’t have to see too much of me, but the youngest son will be around and, like you, I don’t want him to see much of those first few days in hospital. My hubby is starting a new job next week, making it much more difficult to get time off but fortunately have a wonderful friend who has offered to help do a lot of the transporting to and from hospital.

I hope you are able to keep on an even keel over the next few days. I’m feeling a little envious that your wait will be over before mine — I’ve heard so many people say that this side of the op is worse and I just want to get this over with. Keep smiling! 😬 Thinking of you and lots of hugs.