A middle-aged gentleman had a fun-filled weekend with his family, only to wake up Monday morning with a small lump on his neck. The lump was so small that it could easily be mistaken for either a pimple or a light boil, as it was also painless.

He was given some antibiotics following a visit to the GP. However, it didn’t make much difference. A series of tests were carried out before Uchenna Donald Okoli was eventually diagnosed with NET (Neurone Endocrine Tumour). NET is a type of cancer that is difficult to diagnose because it gives rise to a wide variety of symptoms. It does take a longer time to analyse, unlike other types of cancer, and as a result, it often spreads faster to different parts of the body before finally being diagnosed.

At the time Uchenna was diagnosed, the tumour had spread from the Lungs to the liver and part of his bones. There was no NET team in the Colchester General Hospital Oncology Department. So, I had to go with him to the Royal Free Hospital in London for every of his appointments. I subsequently went with him to Finchley Memorial Hospital in London for all his Chemotherapy appointments. However, I wasn’t allowed in as this was during Covid 19 but, I would stay in the car at the park throughout his treatment.

Uchenna was transferred to the Colchester General Hospital Oncology unit in 2021, shortly after NET Team was created, where he had his last Chemotherapy in Dec 2021

Uchenna had a fever towards the end of April 2022, and he was admitted immediately to the A & E unit at the Colchester General Hospital, where he was given urgent treatment. He spent 3 days at the hospital and was discharged with further antibiotics to complete the 7-day circle.

Uchenna started feeling feverish almost immediately after the 7 days of antibiotics; he was admitted to the hospital once again, and several tests were carried out while he was treated with different antibiotics over 21 days. No further diagnosis was detected, and the tumours remained the same in size and location, yet Uchenna was still poorly.

At this point, the hospital ran out of treatment options for Uchenna; that means that the tumour (NET) will no longer be treated, but any symptom that comes up. The hospital advised him to be discharged to hospice, which he rejected because he would rather stay and spend his days with me (his wife) and his 4 children at home than be in the hospice with limited access to us. Uchenna was discharged home in May 2022 but still very poorly.

I offered to be his primary carer, assisting with all his daily activities, driving him to the hospital for all his hospital appointments, collecting his medications from the pharmacy, and ensuring he took them. I did all these while keeping my 9-5 job (working from home) and caring for four children. This took a toll on my physical and mental health, but I could not voice my pain as I had to remain vital for the family.

Uchenna suffered different illnesses after his discharge in May 2022, from terrible cough to shortness of breath, fluid in the lungs, loss of appetite, loss of weight, loss of taste, diarrhoea, joint pain, frequent urination, oedema, and fatigue.

In January 2023, Uchenna had an episode of amnesia and confusion, which lasted for about 2 days. This episode made me realise how much care Uchenna needed, so I took a decision that was not a hard one; I left my 9-5 job and concentrated on caring for my husband and our 4 children.

His health deteriorated more as he continued to lose more weight. Unfortunately, Uchenna died at the prime age of 50 on 23rd April 2023.

I don’t think anyone should go through all of these alone so, to celebrate his 1st year remembrance, we will be having a memorial service and launch 'UCHEMOKOLI FOUNDATION' - A charity which will be responsible for

• Support funding for NET research that helps understand the disease discover how new treatment options can improve patient outcomes, and possibly find cures.

• Support the patients of NET and their families emotionally and financially throughout their NET cancer journey.

• Raise awareness about the risk factors, symptoms, and prevention strategies to empower individuals to take proactive steps for their health.

Your donation will make a real and tangible difference in the lives of those battling NET. Every pound count and brings us closer to our goal of creating a world free from the burden of NET.

Please consider donating through our JustGiving page. Together, we can make a meaningful impact and provide hope to individuals and families affected by NET.

Thanks for your generosity and support.