Supporting the

Neuroendocrine Cancer Community

Name: Gary

Neuroendocrine Cancer Site: Small Bowel Neuroendocrine Tumours with Liver Metastases. 

Hospital: Southampton General Hospital

My name is Gary and I was diagnosed in March 2023 with mesenteric and small bowel neuroendocrine tumours with liver metastases. 

My treatment: Surgery. Excision of multiple liver lesions, cholecystectomy, small bowel resection, and mesenteric root dissection. This was at Southampton General Hospital. Consultant: Mr A Takhar.

Ongoing treatment. Lanreotide injection every 28 days. Creon 25000 with meals. And 6 monthly bloods and scans.  

My Lottery Win 

They say that one-in-two of us will get some form of cancer, but I thought that statistic applied to others, not me.  I didn’t smoke or drink and fitness is part of my life. I had just turned 60 and felt the best I had done for a long time.  

My world was about to change. 

I had played life hard and took on the many challenges we all face. I started my working career as a coal miner. I left the mines and went back to school to improve my reading and writing. Completing an Access course enabled me to go to university to train as a midwife.  

After 22 years as a midwife and reaching senior roles within the NHS, I decided to leave and train as a gundog instructor. By now, I was 50, and little did I know that my life experiences were going to be called on for my greatest challenge yet.  

Towards the end of my midwifery career, I started with pains in my abdomen. I put them down to the demands of being a busy NHS manager. My hours were long and my diet was poor. I remember talking to a colleague about it and she said ‘Sounds like you have Irritable Bowel Syndrome (IBS)’.

I was happy that my pain now had a name. It all fitted so there was no need to bother the Doctor as they were busy, and I didn’t have time. I learned to compensate for the pain and accepted it as part of living.

By then, I was nearly 60 and life was great, apart from the IBS.  Then I noticed my face starting to get warm and turn blotchy. By this time, I was working as a gundog instructor running a training business. I was far too busy to see the Doctor. The IBS at this stage was a multi-daily occurrence, but I genuinely did not think it was anything serious. When I had no pain, I felt good and was very fit.  

But on the 22nd of March 2023 at 18:30 I started with the IBS pain. Usually after 10-15 minutes, the pain would subside. This time was different. The pain was incredibly intense, and I was vomiting.  I was blue-lighted into A&E and was seen immediately. Once given pain relief things settled. I felt like a fraud and the team looking after me was considering gallstones.  I attended the next day for an Ultrasound.  

When you work in the NHS you get good at masking your findings from the patient. I knew straight away there was an issue when I looked at the sonographer’s face, this was more than gallstones. I was sent for an emergency CT scan the following day and was asked to wait for the results. 

I met the doctor and was told the scan showed advanced stage 4 bowel cancer with liver mets. I asked how long I had left without any real concept of what I had just been told. He said this was very advanced and the reality was I might not make Christmas, but they still had lots of tests to do. Someone would contact me on Monday after the Multi-Disciplinary Team meeting.  

Over the weekend I resigned myself to the fact I was going to die of cancer. I needed to get things in order and take control of what I could whilst processing what I had been told. I spent the weekend telling my shocked family and friends the news…. that was difficult

You might by now wonder why I called this ‘My lottery win ….’ 

Well, I did win the lottery that week because I got a phone call from Mark, the Neuroendocrine Specialist Nurse at Poole Hospital. He asked me two questions: Was your IBS diagnosed by a doctor and do you get any flushing? My answers were: No and Yes. He then said: have you heard of Neuroendocrine Cancer? That was a new one for me.  

He told me about Neuroendocrine Cancer. They still needed it confirming, but the scan, bloods and my history pointed to this type of cancer. I asked him if I would survive until Christmas. He said I would be here for a lot more Christmas’s yet. Now I had to tell my family I wasn’t dying and would be here for Christmas…that was also difficult.  

So, I felt I had won the lottery getting this type of cancer. I was one of the lucky few as this is not a common cancer. Had this been the typical stage 4 bowel cancer with liver mets it’s doubtful I would be writing this. Having Neuroendocrine Cancer gives me and my team a real fighting chance. As my consultant said ‘he can reset my life clock because he estimates I may have had this cancer around 15 years before diagnosis.  

Because I was so poorly it was a whirlwind of many tests and scans. I was quickly booked for surgery at Southampton General Hospital, one of the UK’s NET Centres of Excellence. It was a big operation, but most of these cases are. In my recovery, there were highs and lows, but each day was a step forward.  

When I was first diagnosed, I was given some advice by a blood cancer patient which helps me even today. He said: ‘As quickly as possible, you need to move your mental state from dying of cancer to living with cancer’.

So, one year on, and life is almost back to normal. I am a cancer statistic. I am living with cancer. Most of the time I forget that I still have cancer because my symptoms are currently minimal. The reality is this is an evolving journey and there could be some dark days ahead. I took the decision to retire early, and I am now enjoying the life my so-called ‘lottery win’ gave me.

Gary, April 2024.

 

Let’s also remember that not everyone’s experience with neuroendocrine cancer is the same. Some face more aggressive forms of the disease, and sadly, not everyone gets the chance to live many years. We honour those we have lost and stand with all those affected by neuroendocrine cancer.