Jo, United Kingdom

My stepdaughter and I love skincare, I’ve had a hysterectomy and gone into early menopause. I was avidly moisturising my emerging middle aged turkey neck, I noticed a small lump on my throat. I wasn’t particularly worried, but went to my doctor, who also wasn’t concerned at that point and sent me for a non urgent ultrasound. My lovely mum passed away suddenly and I forgot all about it (and moisturising!) until about 6 weeks later, I noticed the lump had grown. My GP put me on an urgent referral pathway and I was scanned two weeks later. The consultant said the lump was indeterminate and that I would need a biopsy. I sort of felt a bit like I’d been punched in the stomach, because, after all that had happened, I just wasn’t expecting it. My biopsy came back also as indeterminate. And I guess I realised then I had cancer, although I was not told so yet. I sort of just knew. My fantastic ENT consultant removed the thyroid with the lump and it was sent off to be biopsied. When my consultant told me I had cancer, I think he thought I was deranged, because I was quite happy. He told me I had medullary thyroid cancer and it was rare. I thought cool! It’s not that anaplastic one that’ll kill me sharpish but boujee nonetheless! But I didn’t know what it was. It’s rare, and it likes to spread and chemo and radio therapies don’t work. So the answer currently is surgery. And when it travels somewhere that can’t be operated on, there are drugs to help slow it all down and prolong life. So I’ll always have this cancer.

Being tired all the time is tough, not being able to sculpt and sell my pottery due to fatigue is also tough. My surgery went pretty well, I have another operation on February 5th. Hopefully after that, I might get a few years without needing anything done. I will have the other half of my thyroid removed and a central neck dissection. I will need to be on a thyroid hormone replacement medication for the rest of my life. My biggest challenge had been having to tell people I love I have cancer and the type of cancer it is. I am waiting for genetic tests which my son and family will need if the test is positive. I’d rather have this a million times over than see my family and their children needing treatment. It’s been a bit like being at my own funeral at times! People get sad, panic, want to see you, I mean it does make you feel very loved, but also trying to behave in as normal a way as possible to ease the anxiety of others. I think people expect you to keel over any second!

My family, close friends and husband have been wonderful. My two best friends message daily to check in, but not in a way they expect me to be normal. Claire sent me a ride on unicorn (essential if you know me), Sarah & Will sent me a mug with ‘f*** this s***’ on it, again an essential if you know me! My husband puts up with a lot. He’s kept me going with a new hobby as I can’t sculpt, he gives me space when I need it and crowbars me out of the house for a dog walk when the walls start to close in. I can be quiet when processing and shut down a bit, so he’s developed good strategies to get me talking. We have a severely disabled son, Alex, who is 22. He’s always been described as life limited (although he is 22 now, he wasn’t supposed to make it to one year). We’ve always crammed as much life, love and laughter as we can into our days. To make memories for all of our children. So that foundation has helped me a lot. I don’t need a bucket list, I don’t need to live life to the utmost, because luckily I always have. That won’t change. Once my surgery is over, I fully intend on getting back to the me who will try anything once. I’ve skydived, wing walked, and run the London marathon in aid of charities supporting my son. Now I will be running, flying and bouncing for me, for my life too. Oh and add in a pina colada on my favourite Greek island. Cancer or no cancer, no one knows how long they have on Earth. Laugh, say no without explaining, use the good china and the guest towels. Hug people you love more often.

I have been so lucky with my GP, the NHS and the cancer pathway. My local hospital Bath RUH and my surgeon Mr Carswell and his hilarious team have made this easy. I explained I’m autistic and only like to deal in facts and absolutes. So I’ve felt heard, respected and cared for. I am only at the beginning. Like most people, I thought cancer meant an oncologist and chemo. But they’re not all like that. I don’t need it yet. After my surgery, I’ll need regular tests and if my Calcitonin goes up, it all starts again, the hunt for tumours. The oncology and any other treatment starts then.

If you’re hearing the words ‘you have cancer’ don’t feel like life is done. Take time to process a little bit about what that actually means. Have some time alone to think, cry, scream, become hysterical. The reaction is different for everyone, and there’s no ‘right way’. Look after yourself amongst it. Have a face pack, a muffin, whatever makes you feel good. To healthcare providers: some people like delivery to be fluffy ‘I’m sure it’s nothing to worry about’. Some people like it straight (me) you have cancer, it’s rare and we need to operate urgently. Try to figure out what your patient needs before assuming. I did meet the former prior to surgery and I really really hate the fluffy ‘I’m sure it’s nothing approach’ because, in fact, you were wrong, it really was something and it was something bad. So try not to patronise people unless they ask you to. Or maybe develop a short course of leading questions to decipher if you have a fluffy patient (not me) or someone who’s looking back at you like you are a lunatic because you told her she would need a general anaesthetic ‘which means you’ll be asleep’. I may not say exactly what I think (well not all of the time) but my facial expression will most certainly give it away!