A glittery turd of a day

I started today with increasing clarity about my choice of surgery and the celebratory wearing of my new faux fur slippers and red sequined poncho. I felt more clear. I felt I was making a decision. And I felt like me.

Then I went to my appointment with my mastectomy surgeon.

There’s always the danger of losing yourself in these appointments. Of feeling clouded, overwhelmed and guided in directions you weren’t expecting. That the world of cancer knows more about you than you do. You will never again be the expert on your own body, never again be the master of your destiny.

There are always surprises no matter how hard you research or how in control you feel. I’ve had many of those surprises lately. First it was the calcifications, then it was pre-cancer, then cancer, then possible spread. Now there’s the chance I may have to do chemo. Again.

My last cancer was HER2+ which meant it over expressed receptors for that protein. It meant it was aggressive but it also meant I could get a drug called Herceptin. If this cancer is also HER2+ then I can get that wonder drug again. But it doesn’t come alone. It’s bringing a frenemy, chemotherapy.

The efficacy of the Herceptin is dependent on combining it with traditional chemo drugs. So to stop the cancer mutating and adapting, they hit it on multiple fronts simultaneously. I’d get this presumably because they want to give some insurance against the cancer having already left the boob. The cells too small to detect on any scan.

I didn’t get much information about it because the surgeon wanted me to focus on surgery and not leap ahead. I am not the person who can do that and feel better. I need to prepare for what’s coming. And I’m mighty tired of surprises.

I now have to wait for the pathology results to see if it is HER2+. I suspect it is because the last one was. I have an appointment on Monday with my lovely oncologist to talk through the options. I will accept the chemo if it comes. Oh, but I am dreading it beyond words. It’s the only treatment that gives me pause as to whether it’s worth it. It’s that awful.

On the surgery front, I came out with a different opinion. My whole team doesn’t want me to have a double mastectomy. Again they repeated that if I’ll be done in, it’ll be the bad boob and not good that will be the culprit. They want to me to do the least harm to myself. Maybe I agree. Especially if I’m having chemo straight after. So I’m thinking along the lines of a compromise. Single mastectomy on bad boob with implant. Then breast reduction to match on good boob.

A day that started good, went bad and is edging slowly towards peace and acceptance. One tiny, shiny sequin at a time.

11 thoughts on “A glittery turd of a day

  1. you write about the darkness with light – the ugly with beauty – the weakness with strength – thank you and may all the good out there take a detour via your boob!

  2. Kamila

    My lovely Heidi, I wish it was a different kind than HER2 – I believe this was really hard not to think about it and focus on the operation only. Thank you for sharing this all – I hope it helps, too…

  3. Lisa

    I can only send you love and electronic hugs. Cups of tea, too, because a cup of tea never hurts. Contemplating chemo for a second time seems so grossly unfair. And yet, is there really another option? Oh, my dear.

  4. Brenda Brush

    Here’s hoping for good news on the pathology front. I find it interesting that your team is leaning toward only one side. My team was all on board with my bidding adieu to both boobs at the same time. Maybe it’s because I had funky biopsies on both sides on different occasions, plus my gene mutation. No matter what, you’re driving the boat on this one. I know it feels like there is so little control over anything at this point. As you know, I totally get that.

    I’m so glad you had a glittery part to today. We all need that. I just got flowers delivered from my school’s PTA, so that totally brightened my day. I’ll share my blooms with you on FB. xo

  5. Heidi

    Thanks lovely people. All your words are gratefully received. I understand why the team don’t want me to have a full mastectomy. In the past the treatment has leaned towards the opposite. To remove breasts as a matter of course. They’re more careful these days. To be fair my healthy boob has never shown any signs of tumours or lesions. It has remained stable even when the other has not under the same conditions. I have no genetic profile for predisposition to cancer. So it is an infinitesimal risk and they’re right, if I get metastatic cancer it’ll be from the bad boob.

    For the chemo part, I’m trying slowly to incorporate it into my potential life. It’s brutal beyond belief and has the power to turn a cold virus into a killer overnight as my immune system gets destroyed. But I am plotting and planning already. Forced quarantine may bring its own benefits. I shall play Warcraft with Lilah and talk to all my lovelies on the interwebs. And shall be constantly and consistently stoned. I’m still shedding tears at the prospect but those will dry and upsides shall be winkled out.

  6. Caroline Phillips

    Oh Heids, my heart goes out to you. Your courage as always is immense, and awe-inspiringly pragmatic.

    I didn’t get chance to reply to your last post, and with time now ticking for your decision, my gut instinct based on your learned summary – and now reinforced by the outcomes with your meeting with the surgeons today – would be to go with a single mastectomy and one reconstruction.

    Why take away a healthy breast? If that one develops cancerous cells, consider the issues at the time. And if it doesn’t, you still have one old friend, and one replacement that keeps your body healthy. Simplistically speaking, the stats you cited say a lot.

    If it’s at all reassuring, every surgeon I’ve met (I lived with a trainee plastic surgeon – an SHO then a reg now consultant – for three years and got to know his surgeon friends) is married to their job. They have to be to perform. So I’m going to make a crass generalisation in my assessment and say they usually know what they’re talking about.

    I haven’t been through anything like the trauma you’ve experienced over the past two years, although if I were to try and reassure you regarding what’s up ahead, my only comparable would be having had two c-sections, which are common procedures, yet major surgery. The recovery process is very similar to what you described you will undertake, with IV tubes, catheter, potential for things to go wrong, and a period of pain. This was all held up by diamorphine (rather comforting as it happens), ibuprofen and paracetamol, and a good deal of after care.

    I don’t know whether you remember I wasn’t able to do much for about 4 weeks once I’d had my first c-section with Ory, so Bernie came every day to help out while Dennis was at work. It is frustrating being so incapable, but if anyone can get through it you will.

    Some of what I’ve written above is probably already irrelevant as you seem to be progressing with your decisions quickly – which is positive. I must admit I am lost on how to consider the impact of chemo and other medication you will need, but I hope this message will at least offer an iota of support amid the vastness of what you’re facing.

    You know deep down what will work for you.

    So much love to you, C xxxxx

  7. Karen

    Darling Heidi, I am so deeply sorry that the possibility of chemo is there again. It must be an terribly awful lot to take on board (even as a friend it’s hard to contemplate you having to do that, so I can only imagine how it must feel to you). But then perversely the chemo also a possible friend in clearing the cancer (albeit in a very brutal way). These things that you and your lovely family are having to contemplate and deal with are so big, and the process must be so exhausting. But I think you are doing the right thing every step of the way. I’m seeing your lovely posts showing you all taking pleasure in the simple and beautiful comforts of life, whether it be a windy beach or a sequinned poncho, just makes me think YES – that’s where your strength comes from. Simple beautiful things with your beloved people. Starry bedspreads, Adam’s brilliant cooking, Lilah’s groovy jokes and creativity. Every little sweet thing that you have in your life keeps you in the present and gives you that little bit more strength and resilience. Try not to let your mind race ahead. You’ll get through this, one challenge at a time. And in the meantime there will be a thousand little beautiful moments to help you through the tough times. LOVE TO YOU xxxxxxxxxxxxxxxx

  8. Frank

    Hello sweetie! What a tough decision to make. If you decide to go for the chemo, I will send you a song a day, so as to help you get through the quarantaine. Here’s one, inspired by the title of your blog. I just like the great flow of the song – hope you like it too. Especially good to play loud and scream along with. https://youtu.be/JISfO7YC2xA
    Love – Frank

  9. Heidi

    I appreciate the intention of your words. I know you all want me to do everything I can to not die. I do too. But I would like to sit with my frustration and grief for a little while. Chemo is not an easy thing to accept. The isolation, the pain, the risk of infection, the nausea, the unbelievable nausea. When people speaking to you, uttering syllables makes you want to vomit. The papery thin state where you could be blown over by a breath. The fatigue that means rationing the times you go up and down the stairs. The agonising ache in your bones that brings yells and tears when you stand up too quickly. The fear that a hug from my daughter will give me an invisible pathogen which could kill me in 24 hours. It’s all the things I have to accept and invite in again. I won’t be able to do that in one day. It’s gonna take a while. I love you all. Please let me be cross.

  10. Karen

    Love you too, so much, amazing woman – and thank you for expressing how you are feeling. I absolutely can see that being cross/furious/raging is absolutely fitting. As is all the grief and fear. Even though I was trying to search for comforting words as your friend, also inside I was thinking nooooooooooooo…….aaaaaaaaaaarrrrrrrrrrrrrrggggghhhhhhhh – I really hope my/our words don’t look like we’re underestimating the magnitude of possibly having to do chemo again. I know I can’t know exactly what it’s like as I haven’t gone through it (at least not yet). But I remember very vividly how it affected you. I’ll never forget that. I absolutely support you in your grief and frustration. SENDING YOU LOVE IN HOWEVER YOU FEEL AND WHATEVER YOU NEED. You are amazing xxxxxxxxxx

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