Brushing my teeth, I glanced at myself in the mirror and spotted a little lump under my chin.  Confused, I leaned closer to get a better look at my reflection, feeling the soft bump with my hand.  ‘Must be just a swollen gland’ I thought.  ‘Maybe the kids and I have picked up an illness?’

Waking up my brood – Jacob, 15, and twins, Poppy and Lola, 12 – I peered under their chins to see if they had the same lump.  ‘That tickles!’ Lola giggled as I felt for a bump.  But none of them had one.  ‘What on earth is it then?’ I thought confused.

Dropping my kids off at school I booked an appointment with my GP. ‘Better safe than sorry!’

Later that morning I went in for the check-up.  Examining my throat, the GP didn’t give anything away, but then he left the room for a minute and came back in with a serious look on his face.  ‘I’m going to fast-track you for a second opinion’ he said.  I could feel panic rising inside me but I didn’t let it overwhelm me.

I had to wait 10 days before I could be seen by a doctor at Musgrove Park Hospital, Taunton.  My mind kept whirring – I couldn’t help but imagine the worst.  ‘It’s probably nothing’ I tried to reassure myself.  After all, I felt just fine otherwise.

Following my ultrasound tests, I was booked in for a Fine Needle Aspiration (FNA).  Another 10 days passed as I awaited a diagnosis.  Googling my symptoms, nothing serious showed up.  ‘They must be taking precautions’ I sighed with relief.

Finally, in October 2020, I was ushered into a hospital room to find out my results. When I saw a nurse standing there with the consultant though, I started to get suspicious that something was wrong.  ‘Julie, I’m so sorry…’ the consultant said, ‘…you have medullary thyroid cancer.’  I blinked back in shock. ‘Cancer…’ I stuttered.  But I was only 48 and I didn’t have any symptoms.

‘It’s rare’ the consultant explained, ‘We will need to do a CT scan to check if the cancer has spread.’  I tried to take everything in as they explained more about the disease.  All I could think about was my three children.  I was a single mum – they couldn’t lose me. ‘We have a family holiday booked next week.  Can I still go on it?’  ‘Yes, that’s fine’ he said, ‘We’ll see you when you get back.’

I felt numb as I left the hospital. Arriving home, I sat in front of my three children on the sofa.  ‘I’ve got cancer’ I said.  ‘Will you be okay?’ Poppy asked me. ‘I don’t know’ I said, cuddling them all close.

The following week, the four of us flew out for our family holiday to Cyprus, along with my parents, Irene and Bob.  Stepping off the plane, I breathed in the warm sea air, and felt a sense of calm wash over me.  This is bliss.

But just a day later, I was lazing by the pool when my phone rang.  ‘We’ve just had your CT results back’ the nurse said. ‘The tumour has spread to your spine and is compressing your spinal cord, and it could even snap if it’s jolted.’  ‘What does that mean?’ I asked, panicking. ‘You’ll have to be really careful’ she said. ‘We’ll need you in for surgery as soon as you’re back’.  Putting the phone down I turned to my mum.  ‘It’s spread’ I said through tears, ‘and I can’t move too suddenly either, otherwise my spine might snap’.  ‘Oh Julie’ she said, wrapping her arms around me.  I felt my children and Dad’s arms around me too as they joined the hug.  We must have looked like lunatics, hugging and crying beside the pool, in a lovely, hot, sunny resort.  For the rest of the holiday I walked around like an ironing board, terrified to swim.  Normally, I’d be the first one up on a banana boat, but instead I watched from the sidelines as my children splashed about.  I was terrified by any slight movement I made.

As soon as I arrived back in the UK, I was taken into hospital for an MRI scan which revealed that the cancer had also spread to my lungs.  The next day I had surgery to remove the tumour from my spine. It was a whirlwind – I hardly had time to think.  When they first told me I had cancer, I hadn’t worried too much.  I’ve always been a positive thinker.  But the moment I found out that it had spread, I panicked.

My step-mother had bravely battle breast cancer but sadly, in the end, she lost her fight.  Now, all that was going through my head was that I wasn’t going to make it.

In November 2020 I had a thyroidectomy and lymph node dissection to remove the tumour from my thyroid at the Royal Devon & Exeter Hospital, Exeter, and although it left me exhausted, I was otherwise okay.  I didn’t look or feel like somebody who had cancer.  But I do – and it is incurable.

Since my surgeries, the doctors have put me on watch to keep an eye on things.  they wanted to avoid drugs but in March 2021 I started to get backache and a compression in my ribs.  I started to think that drug treatment could be my last resort, to give me a bit of my old life back.

Scrolling through Facebook Group comments, I read through comments from people talking about drugs like cabozantinib.  These people had been living with cancer for years because of it.  As I read their stories my heart leapt.  ‘This could be it!’ I thought.

Reaching out to the Royal Marsden Hospital, Surrey, I met a doctor who approved me to go onto a clinical trial for selpercatinib.  In May 2021 I started on the trial and I was thrilled when my pain quickly dispersed.  The drug won’t work forever, but it’s given me back my quality of life.  The cancer will eventually work its way around the drug, but for now I can still be the same mum I have always been to my three children.  I’m less active than I used to be but I’m still me.

After eight weeks on the clinical trial I went for a CT scan and doctors found my tumours have shrunk by an incredible 41%.  I’m so thrilled and it makes me hopeful for the future too.  All I want is to be here for my kids as long as I can and I’ll do anything to make that happen.

From Pick Me Up! magazine: 12 August 2021

It was mid October 2022, about a week or so before I was due to go away to Italy with my wife, Nikki, when I first felt the lump on my neck. I had just turned 40 in June of that year and the trip was a surprise trip my wife had arranged. I decided not to tell her and pushed it to the back of my mind with the intention of making an appointment with my GP when we returned. Looking back at it now, Nikki and I often refer to that trip as the last time we felt “normal”.

Upon our return I spoke with Nikki and made the doctors appointment. “It’s probably nothing” Nikki had said. The doctor also said something similar. With no history of cancer in my family there was no real cause for concern but it was something he wanted to keep an eye on. “Come back in 2 weeks if it is still there and we will get it checked out” he told me.

So the two weeks passed and the lump was still there, just above my collar bone. I made the follow up appointment with the same doctor to discuss what next. We discussed all of the possibilities from a simple cyst or infection to the possibility of cancer (although unlikely) and he made a referral to my local hospital for an ultra sound. But with no symptoms I wasn’t too worried.

By now it was the first week in December and we were in full swing getting ready for Christmas with our 2 children, Brody and Sadie, who were 8 and 3. Looking back, I had been feeling a little more tired than normal but I had put it down to the run up to Christmas and having 2 young children. At the ultra sound appointment the sonographer advised that there were actually 2 lumps. There was the larger lump, about the size of a pea, in the lymph area on my neck and she had seen a smaller lump on my thyroid gland. They said would need to do a biopsy on both to be certain what they were so they were arranged for mid December.

At this point Nikki and I had only told a couple of close friends what was going on as they had helped with the kids during appointments. We did have a fantastic support network of family and friends but had decided not to say anything due to the proximity of Christmas and we didn’t want to worry any other people. The appointment for the biopsy results had come through for 22nd December.

“I think we should tell our family what’s going on, just in case” Nikki said to me the day before the appointment. I hadn’t really considered the possibility up until then as I was convinced everything would be fine. But of course, she was right. We had to let people know what was happening. I called my parents and my brother and told them what was going on and Nikki called her 2 sisters and my in laws to give them the heads up, just in case.

Nikki and I went to the appointment for the results the following day. As soon as we walked into the room Nikki said she knew it was bad news. “I’m sorry, the biopsy results have come back and I’m afraid it’s cancer in your thyroid. It has also spread down into the lymph glands in your neck too ” the consultant said. The rest of the appointment seemed to be a bit of a blur. I just went totally numb and into shock.

The results had come back as an undifferentiated thyroid cancer so they could not determine exactly what type it was, and that it was already in the lymph nodes and glands in my neck. However, they thought it was either papillary or follicular thyroid cancer. The nurse took us into a side room and explained everything. “Things will start to move really fast now” she said. They needed to do an MRI scan, a CT scan and further biopsies to get as much information as possible and try to determine what type it is before they could come up with a treatment plan. Both Nikki and the nurse persuaded me to take a couple of weeks off work to process the tidal wave of emotions and attend the upcoming appointments. Once we finally left the hospital my phone was full of messages asking how the appointment had gone. Phoning around those nearest to me and telling them whilst trying to keep it together was hard work. Although, at this point I was still in shock.

We had decided to the kids to panto the following day for some normality. Sat in the theatre that afternoon I just burst into tears. Everything just hit me all at once. Seeing the kids having such a good time and enjoying everything brought reality crashing down on me. Thankfully they didn’t notice, as they were so engrossed in the performance and the sweets we had got them!!

Christmas and New Year came and went with appointments and messages of support from all of our family and friends. The outpouring of support really blew me away and I was lucky to have a wide range of people behind me.

By now (Mid January) my results were back in and unfortunately they still couldn’t properly diagnose what type of thyroid cancer it was. I was starting to get frustrated, as I was desperate to know exactly what we were dealing with. I had gone back to work and life was going on around me. I felt like I was stuck in limbo. I had an appointment with my surgeon around this time. “I still believe we are dealing with either papillary or follicular thyroid cancer and I’m leaning towards papillary. However, if it isn’t any of these the first stage of the treatment will be the same” he had said. He then went on to advise that I would require a total thyroidectomy and lateral neck dissection. This operation would remove the thyroid completely and all of the affected lymph glands. The operation was booked in for early March.

During this time Nikki was incredible. She had taken on the role of keeping all of our family and friends updated with appointments and results. It was a side of her I had never seen before but I felt so protected by her. This was so helpful as it enabled me to concentrate on my treatment plan and inspired positivity in me also. Learning about a thyroid cancer diagnosis and all that comes with it was like learning a new language.

We had also sat with our eldest and explained what was going on. We had decided to be as honest as we could with him so that he had as much information as possible. He surprised us so much during that conversation. Although you could see he was worried, he was managing his emotions so well and was keen to know what would happen over the next few months.

I had the operation in early March and everything went well. It had taken 7 hours and they had taken 56 lymph nodes/glands. Of which, 17 were cancerous. Although I felt weak lying in hospital the surgeon was happy at how the operation went. I was in hospital for 3 days before I could go home. It took a while for my body to get used to what had happened. I had never fully realised how much the thyroid regulates in your body. So my emotions were all over the place during the weeks after the operation whilst my body came to terms with the lifelong medication I now needed to supplement it.

It was the end of March when the surgeon called us in for the post op appointment to go through everything. “We have had the results through and it is a rare cancer called medullary thyroid cancer. Unfortunately there is a possibility that this could be genetic and we would also need to refer you for testing on that front too.” he said. He went on to explain that this could also affect our children if I carry the faulty gene. He had also said that, although medullary cancer was typically a slow growing cancer there was a concern for how aggressively it had spread through my neck. In light of this I was to have a PET CT scan at a The Christie cancer hospital in Manchester to see if this had spread anywhere else. After this diagnosis was the first time I visited the AMEND website. It was pretty much the only source of information out there regarding this type of cancer. I found myself visiting the site quite often and reading all about the condition and also the patient’s stories.

The next few months flew by and seemed to calm down and even return to some sort of normality. I returned to work in my office at a finance company after a short period of time off after the operation. My body was healing well and had adapted to the medication. I was running and cycling again and even the scar on my neck had healed nicely. I had the PET CT scan in mid May and we had even managed to go on holiday to Spain with the kids too. Playing with the kids in the pool in the sun it was easy to think life was returning to some sort of familiarity for us. But I was finding it hard to push to the back of my mind the possibility that the cancer had spread and that it could affect the kids.

When we returned from holiday there was a letter waiting for us to go in and see my oncologist for the results. When we got the appointment she sat us down and said “The scan was clear throughout your body but there were a couple of shadows on your liver that seemed suspicious and will need to be checked out. We will need to do an MRI on your liver to investigate.” At that point I knew it was going to be bad news again.

The MRI was done a couple of weeks later and it was the waiting game again for the results. We were trying to continue as normal as a family again but thoughts of “what if?” were always there. We went back in for the results in Mid August. “I’m sorry, it seems the cancer has now spread to your liver and there are 2 tumors there. We will need to refer you to a liver specialist to see if a liver resection can be done.” She advised. It was a bit of a blow. I had generally started to feel better. But now it seemed we had to go through further surgery. Telling family and friends was tough again. As crazy as it sounds I felt like a failure for letting this disease spread in my body. Almost as if I wasn’t putting up a good enough fight against it. Looking back on it now I know how daft that is. Cancer will generally go where it wants and you just have to do your best to treat it and catch it as early as you can.

When we spoke to the liver surgeon he did advise that he was able to perform a liver resection to remove the affected areas, although one was close to an artery he was confident it could be removed. After this consultation the operation was booked in.

I had the second bout of surgery in October 2023. I spent a total of 6 days in hospital. 3 on the HDU and 3 on the regular ward. I was used to being an active person so waking up and being so restricted hooked up to all sorts of machines with wires everywhere was a bit of a shock. I was told that there were 4 tumors removed in total.

As the weeks rolled by after the operation I started to get stronger and more active. Simple things like being able to do the school run with the kids was becoming the highlight of my day. In the follow up appointment the surgeon said he was happy with how it had gone and they had removed everything and so I was referred back to my oncologist at The Christie.

The appointment with her in January 2024 was the one I had waited so long for. Since my diagnosis they had been monitoring the calcitonin and CEA levels in my blood regularly, as when they are elevated it is an indicator the cancer is spreading. Unfortunately as I was diagnosed after my first surgery there was no base line figure for the levels I was experiencing. However, they could see that there had been a drastic reduction since my second surgery. Enough for them to advise me they did not need to see me for a further 4 months. At which point it will be a simple blood test. As my cancer has been deemed incurable the hope for me is that 4 months turns into 6 months which then turns to 12 and so on.

We also got the results of the genetic testing around Christmas time. They had come back as a negative mutation which means I am classed as a sporadic MTC case. This has meant my 2 children will not be affected and won’t have to go through any surgeries. That was a welcome Christmas present.

I know it’s a bit of a cliché but for now I am just enjoying things as much as possible. I can play with the kids normally again now. Look forward to trips and plan things again. My diagnosis has strengthened and enhanced my relationships with family and close friends. Especially my wife, Nikki. She has seen me at my worst and been there for me when I needed her most.