Young but no one is taking my concerns seriously

Yea, it was almost as if I had to tell him what to do. I’m fed up with the health system here, it’s almost as if it’s like, well this one sounds complex, throw it in the “too hard” basket. I agree with you!

see what they say, I’m curious too. Let me know how it goes. 

Complete waste of time, just explained that all my blood tests was fine. So no concerns, they also have stated my GP have lost my FIT sample. So I’ve got to go to the hospital directly and pick one up, then drop it off directly to the hospital again as it’s going to surpass the 2 week pathway. 

I expressed my concerns regarding PC and she advised that if I had PC my weight loss would be more significant and I would be jaundice (I explained that not everyone is the same and shows jaundice) she then said that pancreas pain radiates to the right hand side of the abdomen, not the left. So I’m at a miss again, that’s a second professional that’s just completely disregarded me.

im now at a GP appointment to discuss the mental health side of things and also discuss the results of my X-Ray, ultrasound of some lymph nodes and H pylori retest. Pretty pointless stuff as I already know the results, just a matter of seeing if they can give me anything for this stress/anxiety. 

Sorry to hear that, are they going to do any further investigations? Annoying to hear about the lost sample! That’s not your fault annoyingly. 

Again I think they completely disregard us because of our age. It’s so unfortunate and scary that this is the case. I feel that most health professionals probably don’t see a lot of cases because it’s so rare, that unfortunately they don’t know enough about it. They’re probably told that people present as jaundice, when in reality, not always the case. What were the results of the scans? 

I had a good day today, dropped my stool samples off. Did a fair amount of walking and sitting in the sun. It’s definitely helped settle things. 

Please please please follow this up! My brother is 39 and has just been diagnosed with stage 4 pancreatic cancer because they missed the cancer on the CT!!! He had similar symptoms. 

Yes, once I have completed yet another FIT test, they said depending on results they will test me differently. So if positive it’ll be a colposcopy, if negative then it will be a CT scan. But she was very quick to tell me it’s not my pancreas as my pains on the left. Then went on to say gallstones even though my recent USS said no gallstones present. Got to hope for a miracle that nothing shows on the CT scan really, however I’m almost certain (like 90%) something abnormal is going to be there.

just been for my Dr’s appointment, going to have a couple more bloods done just to check my ferritin and vitamin D levels as I’m still dizzy and lightheaded. 

I’m a bag of nervous everytime I go into any hospital setting, losing my dad and now me taking ill for so long. It’s really taking its toll on me. 

Sorry to hear, that’s really scary! How was it officially diagnosed if it was missed on CT? 

Sounds like a tough time, it’s good you have your family support at this time though. Well, at least they’ll follow up with further investigations. 

I have an endoscopy and colonoscopy booked on the 22nd. This was through my consultant at work, so I’ve got a few things in the works, unfortunately, it’s taking longer than I thought to get these done! 

Did the GP offer anything to help with the anxiety?

Yeah I’ve got my partner who is my absolute rock currently, picking me up every time I’m down. 

it’s good that you have someone on the inside to be able to get some more done about things. I feel if they fail to hurry up with things I will be paying for private testing. After watching my dad decline and nobody listen to him seriously, it’s made me lose a lot of faith within the healthcare system. 

yeh they offered some small dose antidepressants, I’m reluctant to go on any medication. But it might be my only shot at a normal nights sleep. 

Sounds like your partner is being a huge help. You need all the support you can get.

Worth a trial, what meds have they given you? I know some medication takes a couple of weeks to kick in and take full effect. 

I got a call today confirming my CT for Monday, I was very surprised but glad at how quick that was. 

how’re you feeling today? Was thinking about your dizziness and hope that’s eased.

Yeah she’s class. Can’t fault her, taking on a newborn and me being as complaining as I am. They’ve given me siertraline, only a small dose but hoping it just takes the edge off until my scans. Managed to drop another FIT test off at the hospital today, so hoping for them results on Monday. 

That is quick! I’ve got a private consultation tomorrow with vista health, so I’m going to express my concerns and see what scans they can offer and timescales. If they’re much quicker than the NHS I’ll just pay. This pain in my left shoulder intensifies some days, then others it just drops and goes to the left side of my abdomen. Really concerning me, I’ve had this pain for around a year now though, but because of everything that I’ve had going on, I couldn’t really prioritise myself. 

hoping if it was something really sinister, it would have taken me down by now. Only thing I’ve been positive so far is H. Pylori infection which has now been cleared with antibiotics. The pain went away momentarily after the antibiotics but now back in full force. 

Where abouts is your pain? Are you having abdominal CT? Or full body?