Eye of the sarcoma

I had mesenchymal chrondosarcoma it’s not a face cancer as such it can be anywhere in the body, it was growing behind my eye on my optic nerve.

Because the cancer was so rare there was no chemo known to kill it, the best way is surgery, but it is known to regrow back in the same place to make sure they have good margins if it was in the foot the leg would be amputated from the knee! One of my surgeons said ideally they would need to chop my head of to get the margins needed! Obviously they could not do that so instead they settled for just my eye socket. I had the operation June 2018 and radiation for 6 weeks in November 2018.

There was always a risk that the radiation could damage the skin and in August 2020 a hole appeared in the flap of skin where my eye once was. I will have surgery on it to cover the hole again soon.

The crazy thing is that I can breathe via my eye socket hole, the surgeon has said convid can cause problems if you get it during or after the surgery so I’m going to wait and see how things are in the new year.

To see more pictures and videos I’m @eyeofthesarcomacancer on Instagram there’s a recent video of me blowing bubbles out of my eye socket, to many it’s amusing but it’s actually more to show how much air comes out my eye socket xx 

4 Comments

  1. Wishing the very best, Daniel, l was diagnosed with a very rare cancer of the nasal cavity in March this year. The tumour was large, but l kept my nose and did not have Radiotherapy. However, the Bugger has a habit of returning, and l find it hard to live with the fear. How do you cope?

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    1. Hi thanks for messaging in. All I can say is that the fear never really goes, you just learn to not think about it as much. Getting a clear scan afterwards is always a huge weight off of your shoulders. Why not write a small article about your journey so far and I will add it in, and talk more about your concerns, writing can be very therapeutic.

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  2. Hello Daniel, wishing the very best for your treatment to cover the hole and hoping that there is no delay in your treatment because of Covid. In March this year l was diagnosed with very rare Transitional Carcinoma in my nasal cavity. The tumour was large and thankfully removed without losing my nose, although l look a bit different. Not a day goes by without the anxiety of it returning because it often does. How do you cope with that fear?

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