Diep fear

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Hi. I’m days away from my masectomy and diep reconstruction. I’m so scared, that I’m thinking of chickening out. It’s not the operation that worries me. It’s the hospital stay. I’m worried about going to the toilet, keeping clean, nurses looking at my body, cathetars, drains and the hot cover they put on you.

Reading up about it all hasn’t helped as every hospital seems to do things differently. My reconstruction nurse has been very informative but I’m still so scared.

What things can I do to prepare? Will the morphine make me sick? Will I really have to use a commode?

Thank you

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I felt EXACTLY the same. I packed a small suitcase with things for a few nights & then packed a rucksack with things id need straight away; boiled sweets, phone, extra long phone charger, water bottle, pyjamas & would you believe flash wipes!
I changed straight into pyjamas when i got on the ward. Nurses wrr lovely, told them i was really provite & asked them to draw the curtains so i had a bit of privacy.
Catheter came out the followibg day. Was MORTIFIED getting it out. Told the nurse & i managed to cover up so she didnt see anything when removing it.
I was really worried about using the shared toilet. I managed & took my flash wipes to give it a bit of a clean before using it.
Noone on my ward had a commode.
Best advice is get up & moving as soon as possible.
It honeslty was not as bad as i had imagined.

Just be honest with hospital staff, tell them how you feel & what you need & im sure theyll do it for you.

Good luck

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Hi bluesatsuma

First of all you’ve got a lot on your plate and it’s no wonder you are feeling overwhelmed and worried.
I haven’t had a mastectomy so I cannot comment on your situation but I’m sure there’s a lot of lovely ladies who will be able to reassure you as well as the breast care nurses.
You should have a nurse assigned to you who you could discuss your worries with.
They are used to discussing fears of the operations as well as your care before after and during your stay.
I had a bi-lateral lumpectomies and lymph nodes removed and then had to have further surgery two months later to get the margins required.
I just want to assure you that the nurses were soo lovely and were always extremely reassuring.
They will get you up and walking as soon as you can but they will accompany you to the bathroom and stay with you if necessary. If you have a drip then it will be on wheels so you will have help to manoeuvre it. They have seen so many people in your situation. Nothing will phase them so I urge you not to worry about them looking at your body. No one judges you. They are there to care for you and help you through this journey

Please DO NOT say no to this operation. It’s a major thing to go through and I get that but the sooner you have the surgery done, the sooner you can start building your strength and start the road to recovery.
You CAN do this. And you WILL. I promise you
Sending you lots of hugs :hugs:

Take care and let us know how you get on
Lynn x

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Hi @Lynikinz and @Luskentyre1. Thank you both for your reassurance and experiences. I know i have to go through with it. This is my fourth operation now for this cancer. Three lumpectomies/cavity shaves with ALND. It just feels never-ending. Cancer has taken my hair, my confidence and now my breast. So much scares me about the diep but this time last yesr I’d never had an operation or chemo, and ive managed those. I’m Sure I’m tougher than i realise.
Xx

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4th op? Ypu truly are Wonder Woman. To have the strength & determination for that is admirable.
You can absolutely do this to finally get rid if this horrible cancer and start to move on with your life.
Its ok to be scared. it’s ok to be embarrassed. Be open & honest with the staff, tell them how youre feeling & what they can do to help. Noone can force you to use a commode. Noone can force you to have someone in the bathroom with you. Its your body & youre in control. Just tell them in a nice way.
Youll get through this x

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Hi blue satsuma
I didn’t realise this was your fourth operation!!
Thought it was your first… wow that’s a lot you’ve been through with a side of chemo.
Honestly you are totally amazing. I can’t even begin to imagine what you have been through so far and now this!

I truly wish you all the best. Please keep us posted

Love and hugs Lynn xx

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Dear Bluesatsuma,

My heart goes out to you, you have been amazing, with your response to other on this site, so kind and understanding.

It’s now your time, for us to be thinking and wishing you well going forward, I feel sure all will go to plan, this time next week hopefully you will be up and about. All very easy for me to say when you’re feeling so anxious.

Thinking of you, with lots of happiness going forward with your beautiful children.

Biggest hugs to you from me love Tili :pray::rainbow::pray::rainbow:

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@Tili, @Lynikinz and @Luskentyre1, thank you all for your kindness. It certainly has been more of a journey than anyone anticipated because i do, thankfully, have the most treatable IDC type that should have been sorted much quicker than it was. Thats a whole other story. But i get so much valuable support and advice from this forum which is often beyond what the fantastic hospital staff have time to tell us. Insider knowledge and solidarity :muscle:. I know the nurses will be along soon to help me too, but you three have already made me feel better. Thanks so much x

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Hello my lovely

Without in anyway being patronising but its big knicker time and you know you need this surgery so pull them up ( or better still get your most loveliest knickers and knockers set and put them on along with your favorite Jersey or cardi and have a good talking to yourself…you can do this

The staff will treat you like a queen and want you to be ok to proceed and get well so please tell them your fears and anxities at the pre op and repeat it on surgery day

Call them beforehand if necessary

If you need the curtains ask for them,
if you need a chaperone ask for one
if you need a family or friend with you ask for it

Speak up and im sure if it can be done they will help

If you can take a large kimono like robe it might cover you up more than the lovely surgery dress and can be flung over you when intimate things sre happening like drains and catheter stuff.

Don’ t spend too much as even some lovely material from a haberdashery or charity shop will work just as well about 2-3 meters worth… think Egyptian goddess mode and throw it over yourself

Get packed and prepared, do some deep breathing get distractrd in a puzzle, good book fab podcast or music and get out of that bed as soon as you can

Youre going to be awesome ( not that you weren’t already)

You’ve been such a fabulous kind contributor so now be kind to yourself and know that everyone sends love, hugs and blessings

Xx

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Aah thank you for your pearls of wisdom @Curlywurly1. You are totally right. I do need to put my big girl pants on quite literally for my DIEP! I have just been to my pre op and feel a bit better. Its starting to feel very real now. Xxx

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Hi again

Hopefully the pre op told you everything and has eased some of the anxiety

Its now the dreaded waiting game again and you know you can get through this so keep reminding yourself of that

I hate thongs so big pants all the way… and once you’re healed there are some amazing ones out there . I love Pour Moi and Curvy Kate

Good luck with everything

Thinking of you xx

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Hi bluesatsuma

Thank you for posting. It is understandable to feel scared at the thought of your upcoming mastectomy and DIEP reconstruction. As @Lynikinz says, facing the unknown can provoke many questions which in turn can increase anxiety levels and feel overwhelming. It looks like you have had a lot of support from the forum which you say helps

It is good that you have spoken with your reconstruction nurse, and it may be helpful to call her again to ask more about the practicalities of wound drains, the urinary catheter and pain relief, as well as the ward environment including the toilet arrangements. As you say practices will vary from hospital to hospital, but not everybody will need to use a commode. The ward environment should be regularly cleaned but if you are especially worried about this it may help to bring in cleaning wipes as @Luskentyre1 suggests.

Talking to someone who has had a similar experience can often be helpful and it may be useful to contact our Someone Like Me service. They can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.

You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

Keeping Abreast also offer a range of support and information to women considering and undergoing breast reconstruction including telephone and face to face support, information videos and comfort and care bags.

You may also find it helpful to watch our recent Facebook Live video with Keeping Abreast and Clinical Psychologist Sue Smith on the psychological impact of breast reconstruction, for more information about the support available.

Do call our helpline if you would like to talk this through or have any further questions or continue to use the forums if you prefer.

Best wishes

Katy

Breast Care Nurse

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