Hello all,
Thought I'd share my story, I've condensed the time lime to make it more readable!
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
Hi NewSurvivor and a very warm welcome to the Macmillan Community but so sorry to hear your story but well done getting through to the other end.
I know from experience having been on my cancer journey for over 26 years (first diagnosed in 1999 at 43) with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) then Asbestosis and recently Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting and giving support from/to people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
…….. support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
Thankyou 
