The surgery that wasn’t

Friday 22 April, Thurstaston. Spring is here.

I feel I’m on a long road. I thought I could see the end. But, it’s not over yet.

Last week, on Thursday the 21st April, which is exactly four years and two months to the day since I was diagnosed with breast cancer, I was in hospital for what I hope is my last surgery for breast cancer. My seventh operation. A nipple reconstruction. This will be the third plastic surgery operation, and I am feeling the usual combination of nerves and excitement. Because mostly surgery is about taking things away, but these reconstructive surgeries are about giving me something back. But I am strangely more nervous than any of my other surgeries, because this one is ‘only’ a local anaesthetic. That means I’ll walk into the operating theatre, I’ll see all the staff and the equipment, and I feel nervous about that. But I’ve been pretty low key during the run up to the surgery saying, ‘Well, you know it’s only a local.’

So it’s ‘only’ a local, it’s ‘only’ a nipple, it’s ‘only’ minor surgery. Well, I think I’m coming to realise that nothing is ‘only’ in cancer treatment.

Since I was last there the hospital have moved into a brand new building. It’s clean, modern, the ward is spacious. The windows are open to the lovely spring day and it feels exactly like healthcare should feel. Ronnie leaves me and I sit and wait.

The usual round of checks happen. But they are much less than my other surgeries, for a general anaesthetic. I tell the nurses that I feel nervous. I’m given my gown and then my surgeon’s registrar, Kate, comes to see me. We spend a long time with a tape measure and a pen marking out the exact placement of the nipple and I feel fine about that. Except I am now sweating profusely, I have to go and wipe myself with a towel. And I still feel nervous. I distract myself playing Osmos on my iPhone.

Ken Graham, my surgeon comes to see me, I am totally confident in him and it’s good to see him. He checks the position we’ve agreed and then, using my silicone nipple as a template, confidently draws in black pen the edge of my nipple. The silicone nipple is marked with black too, but it doesn’t matter I think, because I won’t need it after today.

And then it’s time and a nurse comes and walks me down to theatre. We walk in to the pre-theatre room and I am handed over to my surgical team. I still feel extremely nervous. They are smiling and friendly, obviously this is just a normal day for them. This is as far as I’ve been before, I’ve  always had an anaesthetic here, and then woken up in a recovery room.

As I am shown through the doors into the theatre my head is practically swivelling in all directions. The room is enormous. I mean really, much bigger than I had imagined. And ‘theatre’ is the right word, there are a cast of players, all suited up in blue, all busy doing things in different parts of the room. ‘I’ve never been in a theatre before,’ I say in amazement.

I get up onto the bed and lie down. They cover me with a blanket and start, it’s an extremely well choreographed and well rehearsed routine they have. They chat to me, but nothing is making me feel any more relaxed. ‘Is this music OK?’ asks Kate. ‘I can’t hear any music,’ I say. The lights above the bed are bright but not glaring, shiney collections of silver, blue and green balls, like Christmas baubles. And above me and around me all these pairs of eyes, with surgical masks and hats.

They continue very politely chatting to me. My breasts are uncovered, and my right breast is doused in that cold brown liquid, and then the anaesthetic is prepared. I see the needle, which is huge, and look away and clutch onto the hands that have appeared next to mine at the edge of the bed. It doesn’t hurt, it’s just seeing the equipment is vaguely terrifying to me.

Then they proceed to cover up the rest of me with sterile blue sheets, leaving just my right breast exposed.  I’m trying not to look, trying to disengage myself. I can feel hands on my body placing things down. And finally a folded sheet is placed across my chest under my chin and then pulled up like a concertina so that I can’t see the surgical area. And it’s suddenly too much. I make a sound, I’m not even sure what noise it is and my whole body feels absolutely rigid.

I hear Ken speaking from behind the screen. ‘Sarah do you want to stop now and I can do this next week with a general anaesthetic?’ He has sensed my anxiety. My answer? I can’t speak, I just burst into tears. Not just a ‘trickle from the corner of my eye rolling onto the pillow’ type crying, but deep heavy sobbing that leaves me unable to speak. That is obviously answer enough, and the next thing I know everything surgical disappears and I am lying as I was under the white cotton blanket.

Ken is standing next to me, touching my shoulder. ‘I’m sorry,’ he says, ‘I should have realised that you were so nervous. I didn’t want you to be upset. I’m sorry.’

Everyone is so nice to me, so concerned. They say it happens, that some patients just can’t do this without a full anaesthetic. I try to put my legs onto the floor. ‘I can’t,’ I say. I look at my legs, and they are shaking. Ken asks someone to arrange a ‘chair’ for me. So I am wheeled back to the ward, clutching my notes, feeling like a complete failure.

Three people from my surgical team come to see me again, they are now in ‘normal’ clothes and I nearly don’t recognise them. No masks or hats. I say that I know other women have had this surgery and they actually watched it being done. ‘But they aren’t you,’ they reassure me. ‘You’ve been through so much, this was just not right for you.’ They tell me that it’s OK and that they will see me next time.

I started the day weary, but mildly excited that I was nearly at the end. How did it get from that to a sad Sarah in a surgery gown trying to clean off the black pen from my silicone nipple using an alcohol wipe? My right breast now bruised from the needle, and that’s how I feel. A bruised and delicate failure.

But now, I realise, trying to find something good out of the situation, now I have a choice. Knowing that I was ‘only’ having a local anaesthetic, I had opted for the nipple reconstruction that involved using skin on the breast mound, which creates a nipple bud, but then needs tattooing at a later date to add colour and an appearance of the areola. There are other ways to reconstruct a nipple which use skin from a donor site, usually the inner thigh, but it didn’t really appeal to me with a local anaesthetic. However, if it were done that way the skin would be darker, and I might not then need the tattoo, and also possibly repeated tattoos if the colour fades. Having seen my reaction to this ‘minor’ surgery, I can’t now imagine how I would react to the many needles of getting a tattoo done.

So. Another choice. I’d really like to hear from any one with their experiences of a surgical nipple and which option you chose. I’m also particularly concerned about the pain in the donor site, the inner thigh, and how that healed. It would be great if you could tell me about your nipples…. sorry but that’s the only way to ask really.

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29 thoughts on “The surgery that wasn’t

  1. Dearest Sarah – I’m so sorry that you had to go through this in this manner. I’m guessing they don’t use the term “twilight” in the hospitals over there? Because with my nipple reconstruction, they used a local anesthetic with sedation so I wouldn’t remember. Frankly I don’t think I could have done it with JUST a local. What an awful experience to go through, but good on you for standing up for yourself as a patient and making that decision. Far from being a “failure” I would see your actions as a win for patient self-advocacy.

    Anyway I had nipple reconstruction using donor skin from my inner thighs. The nipple result is quite good aesthetically although I think the color has faded somewhat over the years. But I’m not going to mince words here. The pain at the donor site was rather excruciating and took about a month to heal properly and feel somewhat comfortable. The area, as I’m sure needs no explanation, is awkward in that is involved in walking, sitting, etc. At the time I was working, and was told that I would only need about two weeks recovery time and so I rushed back to work. Big mistake and not fun. Like I said it was at least a month in my case, and I actually have a pretty high tolerance for pain.

    I know there are other possibilities for where they take the skin from, but I can’t remember them right now, but it’s a good question for the surgeon. Cosmetically it’s a choice as to color and texture, but in terms of recovery, it might be worlds apart. Hope this helps!

    • Thank you Anna, that’s really helpful and honest, just what I was looking for. Even my surgeon said about the donor site, ‘It’s painful’ so I guessed as much…. Sheesh. Can’t think of anywhere else ‘nipple’ coloured on my body actually! Thanks for telling the truth.

  2. Oh, Sarah…surgery is so intimidating, even if you’re under general anaesthesia. I’ve watched surgeries as a PT, but when it’s you & your body, different story. I had an awful experience with the wire localization that was done right before my partial mastectomy. Another procedure that was supposed to be ‘minor’ & done under local anaesthesia, with me sitting in a chair with my breast squished in a special window paddle in a mammogram unit. And it was awful. I just read a blog post by a breast cancer surgeon who pointed out that there really is no such thing as ‘minor’ surgery anyway.

    Deep breaths, hugs, and I’m so glad the surgical team was so good & kind & understanding.

    • Thanks Kathi. Yeah I should have realised – all surgery is well, surgery. I declined a D&C (more bc reasons) under a local and I should have realised I’d find this just as terrifying…. I just reckoned I’d be OK for this because I really like my surgeon and we’ve ‘been together’ for over two years!
      So, back to the drawing board. Thanks for your kind comment I really do appreciate it.

  3. Aw, Sarah, I’m so sorry. It makes me so sad that you say you felt like a failure. You have been through so much trauma, I completely understand feeling anxiety and panic. I agree with Kathi, it’s all MAJOR. I believe that nothing related to breast cancer will be minor.

    I applaud your bravery — it takes a lot more to be so honest and open than it does to sit through a stupid operation. Thank you for sharing. It sounds like you have a really good medical team.

    Katie

    • Thank you Katie, I have the best surgeon in the world who only works with people who are completely empathetic with patients – that’s why I thought I might be able to do this with a local. I so much didn’t want another general… aha, but then you see this is the world of breast cancer – full of surprises you don’t want! Thanks for the comment.

  4. You know, Anna reminded me of a good point. I’m surprised they didn’t give you what they call “conscious sedation” over here. It’s generally standard procedure with local anaesthesia in the States. It’s usually an IV of Versed, which is wonderful stuff. You fall asleep, wake up easily, don’t remember a thing & feel refreshed afterwards. That’s actually what I had for my partial mast, believe it or not!! Had the best nap of my life! It was a lot nicer than that wretched wire localization procedure…

    • Well thank you for telling me about that – I have a feeling that’s what I had for a D&C as I was only out for about 15 minutes and I felt completely fine afterwards. I’ll keep the information in the back of my head in case I ever consider having any more ‘minor’ surgery!

  5. Oh Sarah, I understand so well. With my recent procedure, I was “lucky” to be totally out due to the other surgeries going on at the same time. I don’t think I could have done it with just a local either. I did have mine reconstructed from surrounding tissue and they are still healing. Had the first unveiling…It will take some more time I am told and yet another unveiling. You are NOT a failure. None of this stuff is easy, NONE of it! Give yourself permission to feel however you feel. Feel free to contact me if you want MORE info on my experience. I’ll eventually be telling pieces of my experience with this on my blog, too, and guess what, YOU and others give me courage to do that. I admire your honesty and willingness to share this stuff. Thank you.

    • Thank you Nancy – it just seems like a ‘small detail’ – but when you get to it, it’s just as massive and emotional as everything else…. I’ll be in touch to find out more about your experience, thank you for offering to share. I appreciate your comment very much.

  6. Sarah, you are not a failure. Get that thought out of your head. Being terrified of surgery doesn’t equal failure. You’d be crazy not to feel that way. I’m proud of you for stopping what didn’t feel right instead of forcing yourself to go through with it. Those nipples may have always reminded you of how badly you felt then and that’s not the purpose of reconstruction. You’re supposed to feel better. So, take some time. Figure out what’s right and then go.

    Thank you for sharing all this in such detail. I know it’s difficult and I consider it very brave of you. No failure would do that! Thank you.

    • Thank you Stacey. I can see now that this is not a failure, but sitting in hospital crying in a surgery gown is a pretty low place to be! A very good insight you made that if I had gone through with this it might always have reminded me of a bad experience…. I am going to have some time now to reconsider, certainly won’t be having surgery next week. I am glad that sharing is helping.

  7. Hi Sarah,

    I am going to have nipple recon soon I hope.. they keep delaying it.. This Info and the replies are helping me loads to decide. I am ok with locals etc, but I do talk a lot when nervous. I know when I had a wire inserted I passed out, but I was stood up. And I should have told staff I have a habit of passing out. Sending you loads of positive dust your way. There are no easy solutions with BC. We BC ladies just make it look easy xxx

    P.S. see my surgeon next month.. wish me luck

    • Sarah – I’ve waited ten months for this surgery, it’s really not considered very high priority so other surgeries may be getting put on the list before you. I’m glad that all this info is helping, in a way I wish I’d thought this through in more detail last year but my instinct was just to have the least intervention, hence my choice….. now I’m not so sure it is the right choice, as you say, no easy solutions.
      Thank you for your positive thoughts. I hope your consultation goes well and you find a solution that’s right for you.

  8. I truly understand your experience and I sympathize. I was given a choice to have my chemo port removed the same way I had it put in… under twilight sleep in the operating room, or to choose having it out with local anesthetic in the surgeon’s office. Since I have a high pain threshold I opted for the latter. Big mistake. The surgeon had no idea that my port would become stuck in scar tissue and it would become more involved to cut and yank the darn port free. Imagine my horror laying there watching the whole thing. While there was no pain because the lidocaine had done it’s job, I did feel every single hard tug she gave to break that port free from it’s place in my chest. By the time it was over and I could put my feet on the floor I was shaking all over and could barely stand without assistance. From now on I will choose sedation/general anesthesia anytime the choice is given!

  9. Oh my dear Sarah, I am so sorry to hear of this stressful experience. While I have no experience of this actual procedure, I do know what it feels like to have the panicky almost out of body experience you describe when it comes to surgery – and in my case it is related to D&C procedures. You poor love. Promise you won’t be so hard on yourself?

  10. oh honey, I am sorry you had this awful experience. I had ‘minor’ surgery on 12th April, my ‘dog ears’ on my hips (from the diep flap trimmed, and my areola from my ‘good’ breast grafted onto my reconstructed one.
    I got a heamtoma in the recovery room, so they whisked me back down for theatre, so my 2 hour op ended up taking almost all day. They explained this to me when I was full of morphine, and left me to explain it to my husband, who had been ringing Christies all day, as we knew I was ‘first on the list’.
    So we have both been upset by this ‘minor’ surgery, and I think it’s worse because I chose to have this, I didn’t need reconstruction, or a new nipple, I chose to have it, and it was horrible.
    The new nipples are now both healing, the surgeon is pleased, but I think they look like a 2 year old has made them.
    Does this shit ever end?

    • Aw thanks Gabby. That sounds like a horrible experience. I hope you had a general anaesthetic? I think somehow yes, because we chose this, it feels worse when it goes wrong. I know that feeling from complications after my DIEP, and then you sort of blame yourself…. why am I putting myself (and my partner) through this experience? But I long to feel ‘finished’, for the recon bit to be ended…
      It’s very early days for your nipples, and also for you to get used to them. I found every surgery that results in some body change takes some time to adjust to. I wish you a continued recovery.

  11. Hi Sarah,

    I’m sorry this was such a terrible experience for you. Your doctor was so kind as to stop the procedure because he was in tune with your stress and you as a patient.

    I had tatoos with local anaesthetic. I was a little bit nervous at first, but I felt pretty comfortable after awhile. The hard part for me was after the procedure. I was upset about the blood, tatoos, and everything. I cried and cried and cried.

    Are you going with the general anasthesia, then?

    • Thanks Beth…. I can completely understand your reaction. I had a similar experience when I had steroid injections into my mastectomy scar (which were over healing), they used an anaesthetic cream to numb the area, but I could see the needle being repeatedly put into the scar. When I saw all the blood I just felt… well sort of human really and fragile in a way that I’d never felt after ‘major’ surgery.
      Have just had a few days away to ‘breathe’… and will think about this again in a few days when I feel ready, but yes I think probably the GA option.

  12. Pingback: Weekly Round Up « Journeying Beyond Breast Cancer

  13. Oh, honey, you’re not a failure–you’re a survivor. You’ve walked a long, treacherous road and survived every bit of it. That’s something to feel proud about. I’m glad your surgeon was so kind and in-tune with you. Kudos to him for stopping the procedure, and to you for being your own advocate. We hear it all the time, but it’s so true. I strongly recommend a twilight drug. I’ve had Versed several times and was awake but totally relaxed, and remember some things but nothing traumatic. Hugs to you!

    • Thanks very much for coming by and for commenting. Thanks also for the reminder… in that moment I felt such a failure, but I can see now it was quite a brave thing to do. I have a list of questions now… including this ‘twilight’ drug, I’ve not heard of it in the UK. All best to you!

  14. Sarah,
    Just stopped in from Marie’s week in review…I am so sorry for your experience. However, I thank you so much for sharing it with all of us. You, my dear, receive the “bravery” award. I am not sure I would have the courage to stand up for myself and say “We need to do something different here.”
    I am scheduled for nip surgery on June 2 and I have so many mixed emotions. Thank you again for sharing!

    • Thanks Kim for coming by… and thanks for the ‘bravery’ award which I will gladly accept! If you don’t mind me asking, what ‘nip’ option have you opted for…. I am currently reviewing my options and interested in others decisions and experiences. All best for your surgery. And am glad to share! This episode will be continued….

  15. I am due my nipple surgery this coming week just like you and I am so nervous! they are only doing a local and after all my other surgery this is the one I am most scared of. I am 34 and for the past 3 years this is like the final journey and yet I feel sick with worry…I think you are so brave and hope I can be too

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