The second cut is the deepest..

Monday is the day. By 11:30am I shall be hungry, dehydrated and dressed in a thin unattractive hospital gown waiting to go under the knife once more. My re-excision surgery is imminent. Another centimetre of my flesh is going to be removed around the original site of the tumour. Apparently this kind of surgery is quite common and about 30-50% of people with my kind of breast cancer go through this. If that number seems very imprecise then that’s because there isn’t much data around and the variants are pretty big. I did find one small study that 23.8% of people who specifically had the kind of surgery I had, ended up having a re-excision. It’s also a pretty big must for me. Not to blind you with stats but it doubles my risk of the cancer returning if I don’t have clear margins.

It has been a rougher time emotionally lately and I’ve been contemplating why. I think chemo was so hard and gruelling that I hadn’t spent much time preparing for the impact of surgery. I was all la-la-la, nothing will be as bad as chemo. I can do this in my sleep. But surgery has brought its own challenges and they’re very different from chemo so my coping strategies didn’t help me. Walking on the beach and hanging out at the allotment were a no-go. I was too devastatingly tired and I couldn’t lift a shovel, no mind dig with one. Pain also makes meditating and mindfulness impossible. Being in the moment when they are overwhelmingly filled with agony is not somewhere you want to dwell. Body scans remind you that everything hurts. Pain also disconnects you from everyone around you. I was too scared to go out in case I got bumped. When your body is constantly stimulated internally (by pain), the sun seems too bright, the world too noisy. I had this feeling at the height of nausea but it passed quicker. Plus there’s no bear hugs. So the isolation gets intensely physical and emotional.

The medical aftercare was also poor and there didn’t seem a clear structure or point of contact for problems. During chemo I had the hospital, the cancer ward, my oncologist. This time it felt like all the carers couldn’t wait to hand me off to some other schmuck. Where the chemo care was careful and cautious, the surgical was quick, sharp and fast. Perhaps much like the treatments themselves. I’m sure there’s a PhD in there somewhere. The single biggest outside form of support I’ve had was from kind and generous internet strangers on the Facebook page for the Younger Breast Cancer Network (YBCN). User-led, all my fears and questions found an audience who could reassure me with their own experiences and make me feel less alone. I take solace in that.

I did have another Buffy-style fleeting moment. This time I was going through my nighttime routine of gingerly scooting my front-fastening bra off my shoulder. It’s a tricky business as it can be unpredictable at which angle my scars will start to protest. For instance, I was in a changing room today trying on a top that I had managed to squeeze into feet first but I realised getting it off was another matter. I stood there staring in the mirror, perplexed, shifting one shoulder one way and wriggling one arm another. I even considered leaving it on and simply going to the till, bending over the desk and asking them to scan it from there. Luckily I had the awesome Kat to come to the rescue and pull my arms out. Anyway, back to bedtime. As the strap dropped down and I sat there with boobs flopping, I felt this wave of irritation and wish for these sacks of flesh to just disappear. Poof, be gone. I wasn’t sad, I wasn’t scared. I didn’t feel emotionally attached to them. What I think this means is that I’m transitioning to a state where I see my boobs as the enemy. I’ve heard other women talk this way and I never got it. Until now. At the beginning of all this, my boobs were mine. They were fun, bouncy, part of my identity. They did cool things, they played a role in sex, in feeding my baby. They gave me lovely, beautiful cleavage that caught my food (I actually found a chip in there the other day, a whole chip).

But ever so gradually, those things have been replaced. My boobs have been on show to the public. They’ve been handled many times by strangers, stared at in a non-appreciative way, cut into. The surgery clinched it and pushed this forward more. My boobs are starting to take on new meanings that are eclipsing what they were before. They are bits of flesh, parts of my body with no purpose other than cosmetic. And they are trying to kill me. Maybe this is psychological prep work for any future mastectomy. Or maybe it’s a dangerous trick of my mind, disconnecting me from a part of my body that I need to reintegrate into my sense of self. I’m on the fence. Maybe both those things are true and I will exist in this state until the cancer decides for me. As usual, I live with uncertainty.

So now I am learning my lessons. I am preparing for what’s coming on Monday. Kat has cooked everything in sight and the freezer is full of frozen delights. My Brighton Buddy is coming over tomorrow and I will hand her the hoover as she walks in the door. Now I just have to pack my bag in case something goes awry and I end up in hospital overnight. There are many things I cannot control about all this. But some things I can. Here I go then, preparing as best I can.

 

 

19 thoughts on “The second cut is the deepest..

  1. Paula

    My darling,
    I have been working on my PhD non-stop. The only breaks are when I go to the yoga class down the street so as to keep healthy and a bit sane. In all of these lessons I begin by dedicating my practice to you. I think very intensely of you in those moments of high intensity and concentration.
    Your post has touched me very deeply. Somehow I really understand how you feel. Right now, I am sending you all my courage and you can be sure that tomorrow and on Monday and on the following days of yoga practice my mind/body work will be dedicated to you.
    Your Paula

    1. Heidi

      Thanks sweetie. That means a lot that you’re dedicating your yoga to me. I’ll take all the love and strong thoughts I can get. I feel deeply connected to you and it helps a lot to know you’re reading and keeping me in your mind. And what a mind! Sending all power to your brain for the PhD. xx

  2. Varpu

    Dear Heidi,
    Good luck and love and strength Monday! I will be thinking of you!
    Love and hugs, Varpu

  3. Kim

    Hides, to be honest after tht post i m sitting here feeling a bit mind blown, got nothing inspirational to say except to let you know that I am thinking of you and that I love you, & curse the nhs for making your appointment on the only day we could come visit you. bloody typical. Love you. Xxx

    1. Heidi

      Love and thoughts are definitely what’s needed so I’ll take em. Let’s make that date for the next visit and hope that they get it all on Monday and no more ops get in the way of our fun. Love you too sis xxxx

  4. Sokari

    Hi my dear, I too dont have anything to inspirational to say except I fully empathsise with your experience. Its quite difficult to fully comprehend the level of stress, trauma and sheer exhaustion of living with breast cancer and like most things its hard to imagine the time when this is a memory. You have done great and lived it in a real way just the documentation has been an incredible support to yourself I am sure but most definitely to all who have shared the journey.

    love sokari

    1. Heidi

      You ARE an inspiration to me dear Sokari. Living and breathing and kicking ass, Sokari. I look forward to the day when this is just a memory. For now I’m sleepless and reading stats. Step away from Google woman! xxx

  5. Roberta

    Heidi,
    I hope you have a peaceful weekend and I am relieved to read this last post, particularly that you are mentally getting closer to considering the possibility that disconnecting from your breasts could be in your own self interest. IMO (and it’s only mine and I am not in your shoes, and you can tell me to FO) it’s a great mental and strategic step that you are possibly ready to let them go. They served their main purpose nursing your beautiful child pre-cancer, and their job is done. Your identity is you, who you are and how you treat people, your lovely mind and personality, it is not, and never was, a body part including your boobs. I don’t buy that from anyone, even you dear Heidi. I am sorry if this sounds harsh but I firmly believe this and am very, very relieved to read that you are starting to detach yourself from them. I hope what I have said does not upset you. Even though I don’t comment often, I am thinking of you and sending positive thoughts every day. Lots of love to all three of you. Try and get some sleep. xxx Roberta

    1. Heidi

      Thanks for that beautiful comment dear Roberta. I don’t feel upset my sweet. It’s a gift to hear the strength of your thinking and the truth of your feelings. The meaningfulness of things is constantly in motion. Sometimes the shifts are so fast they make you dizzy. Other times they’re slow and steady and you can see it evolving. There’s both these processes in my life at the moment. But change is life and I embrace that. All power to identity being open to that. Much love xxxxx

  6. Paula

    Yes, Heidi, leave Google alone as stats are never representative of the individual anyway.
    Please rest and eat well, prepare yourself in any way that really suits you and your beautiful self.
    All my love,
    P

  7. Karen

    Hello dearest,

    Thank you so much for your amazing post, and for that insight into how you have been feeling. It sounds like you have been through very deep waters emotionally, with the isolating effects of the surgery. I also wish I had something amazingly inspirational to say – all I can say is thank you so much for telling us how you feel and I feel like I do understand it better now and all I can say is thank you and I’m thinking of you and sending love. I think Sokari and Paula and Kim and Varpu have said lovely things. I wish there was anything I could do – please tell me if there is anything, or if you need a chat or peace, or anything.

    What you said about the after- (and during-) care around chemo being so much better than that around surgery is very fascinating. The chemo seemed to have this big presence like a lumpy inertial force which hangs about for a while. Then the surgery seemed a bit like a bird of prey swooping down and grabbing something and flying off. But I imagine your poor body is then thinking, wait a minute, now I have to fix myself. And that must take so much energy and time. I’m sure the thought of going in for more surgery is an exhausting one, especially with your body still so tender and sore. But, as Sokari said, one day this will just be a memory, and you will be so proud of how you have bravely and nobly forged your way through this process. You are so amazing.

    Sending you so much love and a psychic hug xxxxxxxxxxxxxxxxxxxxxxx karen

    1. Heidi

      Thanks for your beautiful comment darling Karen. Yes let’s chat soon. I’m sorry I haven’t been too vocal. I find talking a huge energy investment. But I do value and miss our gibberings ; ) I like your analogy of surgery as a bird of prey. That’s exactly what it feels like! It’s funny though about the memory thing though. I almost don’t want to forget this experience too much because I’ve learned so much from it and its brought me closer to such amazing humans. The trick will be to let the pain and trauma fade whilst hanging onto the lessons. Or does one only come with the other? Another thing to puzzle out.. Love you xxx

  8. Becky

    Just wanted you to know that I will be thinking of you on Monday and I’m sending love through the internet waves. Your writing is incredible, you have a real gift of honest, clear expression.

    Please let us know if there’s anything we can do.

    Love and light from Becky xxxxxx

    1. Heidi

      Ah yes that’s something I’ve come across too. There’s some controversy around over treatment for stage 0. sadly I suspect I’m stage 3. My tumour was large and the proven to be cancerous. I think this study focuses on over treating what could turn into cancer. Although it’s true that the cells in my margins are pre-cancerous, they have form. So best to get them out! But thanks for posting that study. I haven’t seen such a large sample before..xxxx

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