Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)

One Year NED!

I have such a happy update today!

When I had my routine CT scan in August (ish) it didn’t come back clear, so my consultant sent me for a PET scan. That didn’t quite come back clear, either – it showed a 7mm lymph node growth, so my consultant said I should have an MRI and an ultrasound guided needle biopsy to take a closer look at it. I had the MRI in September and yesterday I almost had the needle biopsy.

My boyfriend and I set off to the hospital for the appointment, but long story short, a road was closed due to flooding, other roads along the way were also partially under water, and the traffic was building up on the roads that were (mostly) usable. We should have had maybe twenty minutes to spare when we arrived, but after a while it became clear we weren’t going to make it in time.

Fifteen minutes before my appointment was scheduled, I called the hospital to tell them we were going to be late. They told us to keep coming anyway since we were already on our way, but they couldn’t guarantee we’d be seen. We may well have taken time off work and driven all that way for nothing.

About 35 minutes late for my appointment, I made it to the reception desk at the ultrasound department and explained what had happened – sure to mention that I’d never been late for any appointment before. One of the women at reception went to speak to the doctor, and came back a few minutes later. The clinic had ended, they had packed everything away, the guy with the needle had left… but they would still see me. I just needed to wait a bit while they got set up again. I imagined sitting for a good half hour in the waiting room. However, I barely had time to go to the toilet before they called me in already. The doctor knew a bit about my medical history and why I was there, and listened while I explained further. He had a good look around with the ultrasound thing, and while he did that, the guy with the needle came back, ready to do my biopsy. Except he didn’t need to – the ultrasound came up with nothing. There was no enlarged lymph node, nothing that looked like a cause for concern, and everything looked reassuring, according to the doctor. Sometimes lymph nodes go up if you have an infection and go back down, and maybe that’s what happened. Since it was only 7mm to begin with, it nearly didn’t show up on the PET scan at all. Either way – there was nothing there now. Nothing to see here, move along. Brilliant news! I was so relieved to get it out of the way and to have a clear result – I wish I could bottle that feeling and keep it forever. I thanked everyone profusely for agreeing to fit me in even though I was so late, and for being so understanding about why. And that’s this week’s reason why the people working in the NHS are fantastic. 

So as far as I’m concerned, as my Whipple operation was on 7th November last year, I am officially one year NED (no evidence of disease)! Cancer-free! I am so relieved that I didn’t need to have the biopsy, because I didn’t really want to be poked in my pelvis with a needle (despite the opportunity for adding a new procedure to my repertoire), and because I was worried that if the result was bad I’d have a terrible Christmas. But the only appointment I have between now and Christmas is a follow-up with the doctor who does my gastroscopy, which already came back fine. I have quite a few days off work between now and New Year too, which is great. I can just look forward to Christmas now, and that’s what I wanted. I know there will be plenty of appointments to worry about in the future, but this is a big win for right now, and I’m happy with that.

1 Comment

  1. Emma

    Here’s to a very happy Christmas 🙂 xx

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