Supporting the

Neuroendocrine Cancer Community

You couldn’t write it … by Jane Dayus-Hinch

Four weeks ago, I woke up with a headache, which is nothing new for me.  I took a couple of paracetamol, got up, washed, and dressed, and carried on…

Four hours later, my headache wasn’t any better, so I took more paracetamol. This actually went on for several days and I thought it must be a migraine. I took to my bed, closed the curtains, and felt dreadful. At one point my jaw and my teeth were banging together with every heartbeat and I was really struggling. I live on my own, and I didn’t trust my wobbly self to go down the stairs. The days were passing, and by now I was getting weaker.

Luckily, my monthly injection was due the next day, and when she arrived and saw me, my visiting nurse was very concerned.  She took my blood pressure before giving me the Lanreotide, and it was very high (216/112) – and going up to 220. Unbeknown to me, I was on the verge of having a stroke.

She phoned my GP and arrangements were made for me to go straight to A&E (on an ambulance strike day). Seven hours later, I was still sitting looking at a blank wall in a cubicle.  Eventually, the medical team scheduled a brain scan because there was concern that my Neuroendocrine Cancer may have metastasised to my brain. Fortunately, that theory wasn’t correct. So, blood pressure tablets were duly prescribed.


I was diagnosed with Neuroendocrine Cancer in June 2020 with a small bowel primary, and my prognosis was poor – less than 12 months. I was put on ‘end of life care’ with St Giles Hospice. I’d had Covid, which nearly saw me off, but it was after my surgery and the Cap-Tem chemo regime that I asked to see the hospital chaplain. I consider myself a very religious person and I wanted prayers said if I was on my ‘way out…

I’d had home visits from the Hospice just after diagnosis. And I’d been to visit the Hospice and completed all the end of life ‘Respect’ forms when I was in a wheelchair on oxygen. I understood the concern of all those around me.  However, to my surprise, and at the last minute (and partly due to educating myself with the support of Neuroendocrine Cancer UK) I was given the opportunity to take part in a Clinical Trial for PRRT (Peptide Receptor Radionuclide Therapy) in December 2021. I was naturally apprehensive, but I immediately accepted and underwent four rounds of PRRT over 8 months, at the Royal Free Hospital in London (ENETs Centre of Excellence)

After the first PRRT, I didn’t have nausea, but the chronic fatigue was challenging.

After the second treatment, I slowly weaned myself off the Creon, Lansoprazole and Loperamide. I’m vegetarian but I changed my diet and worked hard on my fitness.  I walked every day, just a few steps – building up to a circuit, and then I started swimming again – one of my joys in life.

After the third treatment, my mental health was also suffering because of ‘life events’ going on at the same time. I’d had two bereavements in quick succession, of people very close to me – my husband left me, and I was alone with my cancer.  I could have easily ‘given up’ (and that would have been the easiest thing to do) but I didn’t.  I elected to stop seeing my Counsellor though, because I didn’t want to talk about it all. I tried to stay positive, I got up, put my ‘face’ on and acted as though everything was ’normal’.

After the fourth and final treatment, an MRI was scheduled along with a CT scan. Christmas was looming, could it get any worse, I wondered?

Last week, a letter from St Giles Hospice dropped on the mat, along with bills, a date for my eye surgery, and a request for a 24-hour urine collection. It was daunting opening it.

I read and re-read the letter from the Hospice. ‘Dear Jane. You have been taken off end of life care….’  Please don’t hesitate to contact us – if and when you need us.

What? I’d been taken off end of life care?

Can you believe, I’m now ’stable’ – the best word in the cancer dictionary.

Apparently, I’ve had an ‘excellent uptake’ of PRRT, and my NET Team and Oncologist have now resumed my care and will review me every 3 months. Never did I think I would read these words.

I think I actually felt a huge weight lifted from my shoulders. I did a ‘happy dance’ around the kitchen!

At almost the same moment, my ‘phone went ping. It was a marketing email from St Giles Hospice – would I be interested in fundraising for them by doing an Abseil over a bridge in Derbyshire.  I signed up there and then.

So yes, I’ll be Abseiling on April 1st (no, it’s not a joke) with my son, and it’s my way of living life – until I need the Hospice again.

I can only explain that it’s like riding a roller coaster, no two days or weeks are the same. It’s difficult to explain to anyone the side effects, the challenges, but NET NATTERS saved me . . . I had a lifeline!

I cannot thank Nikie and Kate enough. They have always been there for me. We all have to be there for each other. To anyone reading this, please remember: there is always hope.