My Lottery Win, By Gary

Name: Gary

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

Hospital: Southampton General Hospital

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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.

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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.