Once again we find ourselves on the eve of surgery…

Well I sort of dropped a bombshell on you all with no details and then disappeared for a few days, didn’t I.

To be fair, that’s kind of how it went for me too. I didn’t get many details on that Wednesday, but I’m not even sure they knew much at that point.

I went in on Friday for the consenting appointment.

My K’s priority was clear. ‘We just need to do whatever it takes to get this thing out. Are you with me?’

Yes, absolutely. 100%.

I gave him my consent to do whatever needs to be done to get the cancer out. The whole thing. Hopefully. You can never be sure but we know that this time around we need to do more. We need to do more than we did last time. Because we do not want to be back here again. This time, we’re going to be ruthless.

So tomorrow, at 8am, I go back into surgery, along with my incredible team. The people who have taken my life into their hands so many times.

It’s expected to be around 8 hours long. Not small.

There will be three access points.

The first will be beyond my hair line. So I will wake up with a shaved right side of my hair and a big scar. But my hair will grow over that in time. This is fine.

The second will of course be through my eye. I will lose my lovely right eye but I will keep both my top and bottom eye lids, which I’m told is exactly what you want for a brilliant reconstruction and a realistic looking prosthesis. I asked if the darling could be salvaged, perhaps help someone, somewhere. But the risk of it being touched by cancer is too much. It will be sent for tests. What is the risk of many of the things in my head being touched by cancer? I don’t entertain the thought.

The third will be back through the roof of my mouth. My original reconstruction will come out. My shoulder will exit the way it came in, two and a half years ago. My two right side implants will come out. My left one will remain.

I will wake up from surgery with a plastic plate sealing off this massive hole from my mouth, 3D printed by my lovely friends at Dawood and Tanner. But beyond that plate will be nothing much inside my face, save for some sort of gauze/packing type thing.

When I wake up I will expect to have:
Only one eye.
And no top jaw.
Hopefully no more cancer.
But I hope to keep my cheekbones. Oh gee, do I hope to keep my cheekbones.

You remember two and a half years ago they cut out the tumour and at the same time they reconstructed my jaw? Not this time. This time it just all comes out.

Hopefully within a few days or so I can go home. Then we wait. We wait until the histology report comes back. It takes around a month. If it comes back and says margins are great, we will start to discuss reconstruction. If it says there’s a risk, we go back in to cut out more.

We are trying to mitigate every possible risk we can of it coming back. There is no way to tell for sure, of course. Oh, if only. But we are doing everything we can.

The first time around, I was so worried about losing my teeth – this is still something that traumatises me, even years later. I was worried about having the outside of my face cut. These are all legitimate worries.

This time, I am bloody terrified that the thing has come back. That wasn’t supposed to happen. What if it keeps happening? I’m not sure we can just keep cutting it out again and again. That doesn’t end so well for me.

My life hanging in the balance feels so much more real this time. It feels like it’s being threatened.
I just want to get the damn tumour out of me.

You know we’ve got the right people on the case. My wonderful surgical team. And the amount that they care about this, about me, is truly humbling.

If an eye, my implants and reconstruction is the sacrifice I have to make to have a chance of being cancer free, that is a sacrifice I am willing to make. I am so aware right now of my privilege. My cancer has come back and Mr K thinks he can cut it all out. I know many people who have been told they have an inoperable cancer. They have to find a way to be at peace with it being in them forever. But they think they can get mine out. I am conscious that this is ridiculously aggressive and fast growing and it’s been almost 2 weeks since my last scan. I am worried they will get a surprise when they get in there of how big it is. But I hope it is no bigger than they expect it to be. It’s time for something to go according to plan.

But mostly, I am so incredibly aware of my privilege of having a tumour they think they can cut out, and I am eternally grateful for this fact. These are words that many people will never hear.

I can’t imagine what the trauma will be like when I wake up with all of my reconstruction gone, as well as my eye. My face cavernous again, as I struggle to push lispy words through my lips. I also can’t prepare for what level that trauma will be. Maybe I will be ok with it, maybe I won’t. Time will only tell.

But I cling to two thoughts:
Just get all the cancer out.
Thank GOD no tracheostomy.

You all know that I try to be as candid and detailed as I possibly can with you all. But sometimes I miss details or I don’t realise something hasn’t been clear. Please, if that is the case and you’re not sure what is actually going on, don’t hesitate to ask me a question and I will try my best to answer. I’ve had a lot of information over the past few days and it swims in a muddled mess in my brain. I want this account, these chronicles to be as extensive as they can be. To keep you updated, to inform, and perhaps these words may one day help someone else.

A few people have asked if it’s the same cancer. Yes. As in, it’s come back. It’ll be osteosarcoma again. Presumably it grew from some miniscule bit that was still hiding in there, waiting dormant until now.

What a little bitch.

My neck biopsy was lost due to mislabelling. This is an adventure in itself that I will write up in due course (it has a beautiful and happy ending after a traumatising start) but I will just mention that I had to have it again on Friday. Results came back negative, the cancer is localised to my face.

I’ve spoken to a wonderful person who reached out to me on Instagram who has given me so much amazing information about losing an eye and the prosthesis process. Even though I have told her many times, she will never truly know how much this act of kindness on her part has meant to me. How much her words have given direction and understanding.

By this time tomorrow evening, I hope to once again be cancer free. But properly this time. Eternally cancer free. No more surprises. This is my second chance. Gosh, please, can this just be a total success? Is that a big ask?

I am once again overwhelmed by the love and support I have been shown. You are all sitting in my heart as I go into this, there along with me to help me through it. I really feel you here. Every single one of you who has reached out and said kind words, every one who has sent good vibes and positive thoughts. If I have not yet replied, I will. In time.

I do not feel like I am going into this alone. At all.

No visitors allowed right now, but I’ve rallied my friends who work at the hospital to pop in and see me over the next few days, and I remembered to bring Clarence this time.

We are ready.

Good bye little eye, you were always perfect. You never let me down. 32 years of 20/20 vision has been everything I could ask for. Thank you for your sacrifice. Through this act, you are giving me another chance at life. And what a beautiful thing that is.

I’ll see you all on the other side. Just… half as much as I did before.

15 Comments Add yours

  1. Sally Kling says:

    You brave, articulate girl! We will be inside Clarence hugging you back. I think you are one of the strongest persons I have ever known.
    All our love, S&A

    Like

  2. Neil says:

    Well…..what can I say Jen? Nothing I haven’t said before.

    And I know that being labelled “brave” etc feels weird.

    But you are fucking brave. You are confronting 10 lifetimes of hurt in one go.

    Go get em.

    Fierce as fuck.

    Like

  3. You are an amazing person. Thank you for sharing honestly your latest challenge. I am in awe of your courage and hope. Though I’m sure fir you it feels like you have no choice! But the hope is the thing that will hold you through your trauma. Hang in there.

    Like

  4. Jayne says:

    Sending you the biggest cwtch (a Welsh hug)

    Like

  5. Jane Doherty says:

    Sending you our love and good wished Jenna.

    Like

  6. Virginia Hexter says:

    Jen. Thinking of you today. You are a tower of strength. You will get through it and defeat this beast of a thing. Good luck.xx

    Like

  7. Janis Totham-Davies says:

    Bless you, we are all with you and will be holding you in our hearts all day tomorrow and for the weeks to come as you recover.

    Please know that having one eye is fine and not a real problem. I lost my right eye to cancer when I was nine and a half and my malignant astrocytoma took some of the peripheral vision in my left eye too but here I am at 67, with glasses yes, but having lived a full life.

    I was head of my women’s darts team, a crack shot with a rifle and hand gun at gun club getting higher target scores than the men at the disabled rifle clubs. The thing about having only one eye is that everything will look nearer to you than it actually is! That has always been my secret advantage.😉 I have ridden a bike all my life and also scoot with my non-electric scooter all over Takoma Park. I leant to drive a manual car, rode my motorbike up until I was told that I actually wasn’t meant to because I don’t have full sigh in my left eye though I was unaware of it! But hey, I proved I could do it all and I have never had an accident!

    Here in America I have run my own Daycare for nineteen years until August this year for children from eight weeks old until they no longer need me after school around age twelve. I have two sons, two wonderful daughter in-laws and four grandchildren all living in the UK and have beaten cancer twice now.

    You are strong, brave, and have a wonderful future ahead of you, and very importantly you are helping so many people young and old who have been given the diagnoses we have both had and everyone dreads, ‘You have cancer’. Your depth perception will be different after your operation but you brain will quickly compensate, just be aware of that once you are up and about and going up and down stairs and walking around any obstacles and reaching out for objects.

    We will see you on the other side of this pesky new tumor, and although I am not religious I will pray that once it’s gone it is gone for good.

    Sending you much love. Janis. X x x x X

    Like

  8. tlj61 says:

    What a powerful, beautiful piece of writing, Jen. I will be thinking of you today and in the post op days. If positive thoughts can be heard, then UCLH must be humming with the goodwill coming your way.

    Like

  9. Erica MacDonald says:

    Having been through so much before, I know you already know to just hang on… anticipation is so hard but soon enough you’ll be in the thick of it and then through it. And one day, tomorrow will be a year ago and you’ll feel so much for the woman you are right now ❤️ Ruthless sounds really good. May they get every last bit of cancer ❤️

    Like

  10. Samantha says:

    So beautifully and eloquently written, Jen. I have followed your journey for a number of years and I am constantly in awe of your courage and bravery. Sending you so much love and crossing all my fingers and toes for you this time round xxx

    Like

  11. Ash Ross says:

    Jen I feel so privileged that we spent the time we did together while you were out in Aus. You are definitely not alone through this. We are with you. And if anyone can rock one eye and a sick eye patch it’s you. Go get ’em girl!!

    Like

  12. John Kirby says:

    Hi Jen, all my thoughts and prawers are with you this week.
    Keep happy thoughts and time with good friends in mind. LOL, jk xx,

    Like

  13. SharLar6074 says:

    Thinking of you today Jen. Hopefully, by now you are out of surgery and they got it all! I will be praying for your recovery and continued health.

    Like

  14. Eva Meland says:

    Oh Jen. I am full of admiration. How beautifully you write about these devastating things that are happening to you. I wish you all the best from the bottom of my heart. I wish that they get it all. And that your recovery is the best ever. And then, that you live happily ever after.

    Like

  15. Pat Banister says:

    How are you Jen?

    We’re getting a bit worried. How did it all go on Monday? Hope that it’s that you are resting.

    All the love in the world.

    Pat & Margaret up in Lincolnshire xxxxx.

    Like

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