In July 2019, my husband, David, was diagnosed with neuroendocrine cancer at the age 26.
Back then, his primary was unknown, but it was suspected as upper GI. This moment will live with me forever, not only because this was the day our world was turned upside down, but also for the Consultant’s response to the instant grief I felt and very visibly displayed, the words: “Why are you crying, he isn’t going to die” will live with me forever.
“Why are you crying?” Because we wanted to start our family, will that ever happen now? “Why are you crying?” Because, despite you saying “he isn’t going to die”, he might. I might lose my best friend and soul mate. ”Why are you crying?” Because we’ve just booked an exciting trip to Iceland, are we still going to be able to go? “Why are you crying?” Because you’ve plunged us into the unknown, and right now you can’t give us any answers. “Why are you crying?” Because no matter what the outcome of this is, our lives have just changed forever.
After this initial appointment, David had a CT and an endoscopy at our local hospital, and after an appointment with the local Gastroenterologist, we were referred to The Royal Hallamshire. Our first appointment with Dr Alia Munir, a Consultant Endocrinologist, couldn’t have been more different to when we were given that first diagnosis. She was kind, compassionate, understanding and above all else gave us the confidence that she was going to look after us. At this appointment, we discovered that David’s primary was in his small bowel with metastasis to the lymph nodes in his neck.
David was instantly started on monthly octreotide injections whilst waiting for his PET-CT scan and had bloods taken to test for the MEN1 gene due to his age. David’s body didn’t react well initially, and he spent a week in bed, sleeping, being sick and needing to visit the toilet frequently. This was a scary time as we didn’t know how long these symptoms would last or what would happen long-term. By the end of August, we had David’s appointment for the PET-CT scan and had also found out we were expecting our first baby. What should have been an exciting time and something we had wanted for a while came surrounded by questions of ‘Is this the right time?’ ‘Is it fair to bring a baby into all of this?’ ‘Are we going to manage?’ and for me personally, ‘Can I manage this alone?’
David’s PET CT came back and showed us the true extent of metastasis. There were lesions in his spine, lung, liver, as well as the small bowel, primary and lymph nodes. It was decided at his MDT that David could have a right hemicolectomy to remove his primary and hopefully help reduce some of the symptoms he had been experiencing. Luckily, the genetic testing came back negative for MEN1, which gave us one less worry through pregnancy.
David had a right hemicolectomy in February 2020.
I continued to work as a teacher the week he was in hospital, and looking back, I should have been kinder to myself and taken some time off, between working, being 30 weeks pregnant, travelling 30 minutes each way to visit David, and the worry that comes with major surgery meant I was completely exhausted.
David spent a week in hospital. Pre-surgery, he was on an Octreotide drip as part of his Carcinoid Syndrome protocol and then again post op. Unfortunately, David was on the Octreotide drip longer post op than he needed, and this was making him feel more unwell. At this point, I had to advocate for David with the nurses and ask them to remove the drip, as this was now hindering his recovery instead of supporting it. I was so glad that I had been at prior appointments to listen to what the Octreotide protocol’s role was, so that I could advocate for him at a vulnerable time.
David recovered well at home, and by April, he was back to work on a phased return. Our son was born in late April at the height of Covid, and even though David should have been shielding, he was by my side for the birth. Covid was a really difficult time; we were isolated from our support network for David’s safety, but being new parents alone really took its toll, especially so close after David’s major surgery.
In 2023, we welcomed our second child into the world, and although this was an exciting time for our family, I still worried that I wasn’t being fair to him because I was bringing him into a world of uncertainty and a world where he had the very real possibility of losing his dad.
In September 2024, I came to a point where I was burnt out, my mental health had dipped, and I didn’t know if I could cope anymore.
I had managed my thoughts and feelings around David’s cancer for the first 5 years predominantly on my own, because I didn’t feel like I could ask for help, as I wasn’t the one with cancer.
Starting Counselling helped me realise that I needed to reduce the stress and pressures in my life, and whilst teaching was something I’d always wanted to do, my family and my health took priority. So, in 2024, I took the leap and left my career in teaching to support my mental health and give me the time and space I needed to prioritise myself and be in the best possible position to help and support David on those days where he needed me.
David’s health declined in November 2024. He was suffering with pain in his spine and an increase in his Carcinoid Syndrome symptoms, leading to him being very unwell and again spending the majority of time in bed. With David’s symptoms flaring, we didn’t have as much opportunity as we perhaps would have to enjoy Christmas activities with the boys, but one thing David did feel up to was a drive around our local villages searching for Christmas lights on Christmas Eve. Our boys loved this and asked to do it again in 2025 and have already asked to do it again this year, so I think this might be our new Christmas tradition.
In February 2025, David had a left lateral neck dissection to remove the affected lymph nodes. He spent 3 days in hospital as again he needed an Octreotide infusion pre and post op. Surgery this time felt more challenging; I had constant memories of his first operation and recovery, as well as having a 4 & almost 2-year-old at home. Luckily, we have a fantastic support network around us. My parents took care of the boys during the day so I could be with David, my best friend made us all meals daily, and I made sure I was home each day for when our eldest came home from school to keep his routine.
The school was incredibly supportive and kept me updated on how he was doing emotionally in school, and gave him the space to talk about what was going on at home, which made a very difficult time more bearable. The help and support we received didn’t end when he was out of hospital. Once home, our family made us meals for the first few days, and our friends took our eldest to school for the first week so that we had one less worry.
Navigating cancer and children can be tough at times, but something we have always maintained is that our boys need to know everything that is going on in an age-appropriate way because we don’t want them to see cancer as something scary.
They ask lots of questions around David’s medication, hospital visits, nurse visits and his surgery, and we feel it’s important to be open and honest with them, appropriate to their age. For example, they understand that Creon helps daddy to digest his food properly, that his injection of Lanreotide helps him to stay well, and they also understand that daddy gets tired and needs to rest, but if they allow him to do those things, then he will be able to play again.
Our youngest still talks to Daddy about his scar from his left lateral neck dissection, and our eldest understands that he needed to have surgery to remove something in Daddy that shouldn’t have been there.
We’ve had 6 years of stability in terms of cancer growth now. However, this has still taken a mental toll, anxiety around scans and hospital appointments is the same now as it was in the beginning, but I’ve learnt that it’s ok to feel like this and the importance of doing things I enjoy to lift my mood.
In the beginning, I learned how to administer David’s Lanreotide. It felt like a way I could help and support him, but over time, this became unmanageable, and I became incredibly anxious around doing it wrong, hurting David, and it got to a stage where I would cry before and after giving him his injection.
David now has the Sciencus nurses administer his injections, and for a while I felt incredibly guilty for this, but working through this with my Counsellor, I’ve realised that I don’t need to feel guilty about this, I’m not a medical professional, and I’m not a carer. I may care for David when he needs help and support, but first and foremost, I am his wife, a mum, and I am me.
Counselling reminded me that for me to support David and our boys, I needed to prioritise myself and my own mental health – because, as the saying goes, you can’t pour from an empty cup.
So now I read, I make time to see my friends without feeling guilty, and I reach out to my wonderful parents to support with the boys so that both David and I can enjoy doing things together that don’t involve trips to the hospital for scans and appointments. I used to believe that I had to be able to do it all on my own because if I could do it on my own whilst David was alive, it meant that should the worst ever happen, I would be ok, and I’d be able to manage on my own.
Looking back, it was those thoughts and feelings that should have made me reach out and ask for help sooner. I have spent years trying to protect David because if I protected him, I was protecting our family. But by doing so, I took away his autonomy and, in the process, burnt myself out, and although it feels wrong for me to be waking him in the night to help with the boys due to him already having fatigue, I’ve learnt that it’s something I need to do.
We have both learnt that we each make contributions to our family and home, and that neither one of us needs to do it all and whilst I still feel guilty that David might be cooking, cleaning or ironing whilst he’s fatigued, I remind myself that it is a contribution to our home that he wants to make.
Counselling helped me to see that I needed to live in the here and now, appreciate what we have, live life to our new normal, and whilst our future will always be uncertain, I have such an amazing support network, including being a member of the Neuroendocrine Cancer UK Friends & Family Support group, around me that I would never have to do it on my own. I now work in a non-teaching role within a school, which I love and gives me space to simply be me whilst still being able to leave work at the school gates. This year, we celebrate our children turning 6 & 3 as well as our 10-year wedding anniversary, and whilst our life might look different to the life we had planned, we are determined to make memories and live our life to the fullest that we can.
Stephanie.
Written May 2026