My NET journey

So historically I have always been fit & healthy and no major health issues, I have just turned 56.

3 years ago (roughly) just had no energy felt sick a lot and lower right abdominal pain (had a really bad hernia about 10 years ago and it felt like another one)

Throughout the last 2.5 years I'd had so many doctors appointments, blood tests, FIT tests all to no avail, obviously after all this time and being fairly annoyed because they were just simply not listening! Only you know your body.

Fast forward to last Christmas I was so hacked off I decided to book a private CT scan with scan.com(with contrast) it cost me £1300 for a scan covering me from my neck down to my pelvis, best bloody decision I've ever made, within 2 days I received a call from a consultant to give me the results (the followup call was part of the package) And not good news, I had a 18mm lump near the terminal end of my Ileum.

So armed with this insight I booked an appointment with the GP, the GP put me on the 2ww, I didn't even get any contact for nearly 4 weeks! I didn't get a great experience with my local NHS, Things like expecting me to go for a sigmoid colonoscopy for biopsy which I refused (no not belligerent) for those that don't know a sigmoid colonoscopy doesn't go far enough to reach the ileum, I needed a full coloscopy to reach the lump to biopsy it. Thankfully we have a neighboring NHS hospital that is much better and would have ultimately been sent there anyway, but I wanted it dealt with so requested that they refer me to there.

Well good decision as by the time I had been messed about by my local NHS we were already at the end of May (yes 5 months after presenting my GP with the scan report. After referral within 2 weeks they gave me an appointment for colonoscopy one week had all my tests booked and condensed into the next week, PET scan Monday, CT Tuesday, Liver MRI Wednesday, 10 hr fasting blood test on Thursday and Echo cardiogram on Friday.

That was June this year and I had my right side hemicolectomy and 12 lymph nodes removed on the 7th of July. I was up and out of bed 3 hrs after my op and discharged after just two and a half days.

It's been OK since then, I'm on week 5 just finished my 28 days of self injecting blood thinner (I hated it!) generally feeling good although I've had numerous telling offs by my support nurses for pushing too hard but it's just my nature I guess, I do cycle 60 miles a week to work plus my own time riding I probably do around 100 miles a week so yes I do a lot of exercise, couple that with 2 children under 15 to keep busy too.

Over time I've lost nearly 18kgs total in weight, doesn't sound much but I only weigh 66kgs now and I'm 5 ft 9in tall so skinny as! The nausea persists as well as the lack of appetite (the heats not helping)

I'm early on in my healing but have tried to stay upbeat, I've hidden most of my pain and suffering from the children and didn't even tell them I had cancer until I was post op, obviously I had explained that I had a lump but played it down as a straight forward op to remove a lump inside me.

I think I've said enough now but if you are a NET sufferer and are struggling with what ever stage you are at please do reach out! Stay strong x