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Reluctance


farmers wife
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PCUK Nurse Dianne

Hallo GunnarG,


I have read your last messages and also back over previous threads. Would you consider emailing us at our support line - support@apancreaticcancer.org.uk and we will see if we can help you out with some information and way forward.


Kind regards,


Dianne

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i dont know if its any point acctually. i know all i need to know about this cancer.just hope the mri shows something .so i dont have to go and think about it all the time

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Mri came back "fine" i find that very hard to believe as i got some pictures home with me and one mrcp clearly showed a "shadow" in the pancreatic duct .

how can the radiologist say the pancreas was normal?

ive read alot of stories where people have had several ct's mri's without even a tumor showing up when they indeed had one .

because of that and my increasing symptoms and indigestion i cannot relax at all!

scheduled for Eus the 23 of november to long to wait in my eyes as i can go inresectable waiting!!!!!!

this country sucks.

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So sorry to hear that you still feel you do not have any answers. It must seem like an eternity until your next investigation but every new one will hopefully give you more answers and hopefully eventually some peace of mind. Do consider ringing or emailing the support team - they will be able to offer you some help specific to your symptoms and issues. Take care.

Deb

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Hi Sue, GunnerG,


I have read the last posts here with dismay as I have come to realise how we are routinely administered by health professionals. Truly a disgrace. I am unsure whether it is cost saving, ignorance (hard to believe of the highly educated) or just lack of care + thought in their work.


I have given up for now. As you will see by the timing of my post, up in the early hours. Each night 3 hours up for a gap between pain. GP attitude is to administer increasingly stronger pain relief, currently before bed 300gm tramadol, 600gm gabapenitn + sleeping tabs. I am a zombie during the day, unable to work and depressive.


I thought we had found the cause of my pain: Top Doctor back from holiday phoned me from regional centre to say he had a change of heart about referring me back to my local hospital, he would look at my new scan (the 1 he had looked at was a year old and he had not noticed). I told him that the new scan was waiting on his computer system for him to look at, he got it on screen whilst on the phone to me, he declared with excitement that he could see a PANCREATIC STONE, CALCIFICATION + PANCREATITIS. We both agreed that this was the cause of the pain, both relieved really. Not a tumour. Great News!


I rang everyone, although still a serious problem, it is treatable and at the very least not cancer. I even rang my GP, who was on holiday but shared the good news with the receptionist.


U TURN: Went for an appointment to regional centre for blood tests. Got there and unexpectedly had a consulation with Top doctor. Who did a complete U TURN. Said I DID NOT HAVE A PANCREATIC STONE, DID NOT HAVE CALCIFICATION, DID NOT HAVE PANCREATITIS, DID NOT EVEN HAVE CYST ON PANCREAS TAIL, as identified and in writing to GP from the 1st CT scan.


My husband and I were speechless. How could he see these things when speaking with me on the telephone and now apparently they are no longer there? He is not a junior, he is a leading transplant surgeon.


Stones are not life threatening, but still require treatment, are by there very nature painful, whether in the gall bladder, kidney or pancreas. I have had them in the gall bladder (everything removed), the pain is identical, but in a different place. I know without any doubt that this is the cause of my pain. I am not medically trained, but the location, type of pain and when the pain occurs, confirms this.


Pancreatitis is the cause of this, information available suggests that this inevitably leads to quite serious problems if not recognised and treated.


Since then, my GP arranged for a colonoscopy + gastroscopy under GA. Prior to these procedures we asked exactly what specific areas of my body would the cameras be looking at. A diagram was drawn, sadly the surgeon explained that he would be unable to look at the area where the pain starts as it is not a part of the body that either of these procedures covers. The area on my body quite visible as I had pressed it constantly days before, leaving a bruise, deliberately visible to those looking at me during the procedures, whilst I was unconscious.


What a waste of time and money. But it was yet another hoop I had to jump through.


I am wiped out from dealing with the NHS. I am saddened at what I see happening not just to me, but many others whom I have come into contact with during the past 20 months, but mainly the lack of integrity and care that I see on every occasion.


I try not to think anymore about what to do next. Only knowing in my heart that one day, it will come to light, that the U TURN doctor will have some explaining to do.


I am entitled to a 2nd opinion on the CT scan, I did request this immediately. My GP got shirty and said it was better to have the procedure mentioned above. My next step will be to have the 2nd opinion, but I will wait until after Christmas (a time of year that I love), I would like to visit one of the large London units.


In relation to this forum, my situation is not about cancer, but about the difficulties in getting a diagnosis and treatment. The word I used to describe my first post was RELUCTANCE, it is so. The most remembered phrase throughout this painful time has been "you don't have anything wrong with your pancreas, it is too rare".


The pain and symptoms associated with pancreatic problems when listed as a whole, are unique, but health advisors always look elsewhere. I know from following the many sad stories that this is happening to most people, early diagnosis and treatment is essential with the pancreas, but does not happen.


My thoughts and prayers are with you all, Karen x

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Hi Karen

I feel as you do, hopeless, despondent, angry, frustrated and I do not even have any of the awful symptoms you are suffering! I don't know what it will take before things change for the better for everyone effected by PC. Losing faith by the day but absolutely can't because people like you are suffering. Sending you my love and know it is just not enough!

Deb

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Dear Deb,


Thank you so much for your kindness, thoughts and love, I really appreciate this and always feel lifted knowing there a friends out there who understand and care.


My heart goes out everyday to those I know of and also those I don't, who are sufferering. I hope that they can feel that they are not forgotten.


My love and prayers to all, as always, karen x

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I have managed to move forward my eus appointment after sending tons of mails to a gastroenterologist professor at the hospital.(he probably felt sorry for me eventually)


Actually he mentioned that that day there will be a course there and in that occasion one of europe's best experts in EUS from Amsterdam will attend the course and because of that he will do the procedure along with that professor. so if he doesnt find anything i dont know who will:) so he was mighty kind to me. i could not believe what i was reading:_)

im now scheduled for EUS november 15.

I cant say i look forward to it (bit afraid what the outcome will be) but at least i can get some peace of mind when the procedure is over no matter what the outcome.



wish me luck. Gunnar

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Wish I could make sense of it but not qualified I'm afraid! Wishing you lots of luck on the 15th and hope you find the answers you need and deserve. Do let us know how you get on. lots of love

Deb

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well. good news so far, nothing showed up on the eus. and they said that usually they cannot get a clear picture when doing this.but in my case they could see the pancreas very well and they could not see no tumor, unless its smaller than 3 mm.

i could not remember anything from the procedure not even getting the tube in my mouth i just greeted the doctor and than slowly "dissapeared" and woke up back in my room.


although i know this is good news. it does not help the symptoms!

getting more depressed as well.

what are your thoughts? rely on the eus results or?

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  • 4 weeks later...
  • 2 months later...

So im back here again, i cant help but to feel there is something more serious, now i fart every 5 minutes wich smells really realy bad(sweet and rotten), my stomach makes these noises down in my intestines like somethings fermenting.


and my stools are the same sometimes floating sometimes sinking like a rock, but always same distinct sweet smell. and pretty greasy and leaves some small floating fragments in bowl but no oil drops.


i feel a pressure builup in the throat like i have to burp ,sometimes i burp but sometimes it feels more trapped. have som pain underneath my right rigcage.(hope its not from the liver)

i cant help but to get scared when my feces are the same everyday , and the symptoms.


i keep sayin to myself that the doctor who did the EUS said theres noting on my pancreas, but isnt it possible it may have grown from insignificant in size to significant in 3 months?

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PCUK Nurse Dianne

Hi Gunnar G,


Sorry to hear you are still having symptoms. As it has been some time since you have had investigations it would be prudent to ask for further imaging due to increase in your symptoms. Normally the same investigations as previously is ideal as then you have a comparison, so as you have had an MRI previously this would be best imaging in this instance. I have had a quick look back through your forum posts, however have you had any input from a dietician previously in respect to your diet and any evidence of malabsorption? Has coeliac disease been excluded? Also have you previously had a colonoscopy. Certainly the way forward would be for repeat blood test (ie CA19-9, CEA) and also MRI and then move forward from there.

I hope this is helpful.

Best wishes,


Dianne

Support Team

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the thing is, from the time i had EUS. I Actually gained 10 kgs , but im now starting to loose appetite and loosing weight again.

they have outruled anything harmful, and like they tell me, u do not have pancreatic cancer. but we will gladly examin u for other causes. im not far away from getting myself hospitalized in a mental hospital. cause i cant take the anxiety that comes with loss og appetite and general feeling unwell

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im not in very bad pain , but the pain comes and goes. its no in mye upper right stomach area just under rib cabe and down. the worst is the nausea/appetite loss.

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So sorry to hear that you are still suffering and hope that you are able to follow up Dianne's suggestions for further investigations?

with love

Deb

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yesterday i acctually thought i might have the solution to my problems ,as simple as Migrenes with low grade pain. ive read migrenes can give constipation and diarrhea.. but i doubt that is the case.

however i did notice a bit more appetite after taking migrene medication(just a bit). i know this sounds stupid but, it made a lot of sense yesterday. cause ive had additional symptoms as headaches black floaters in eyes and a increased sensitivity to light and sound. but unfortunatly today im back where i was again:/

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Does sound like there is a lot going on and I hope you can find someone who can unpick all the symptoms and find an answer. I guess with a lot of medical problems, you can get other related stuff going on as a result. Of course, the worry and stress of it all can result in symptoms as well. Where to begin? I can see you are constantly trying to find answers yourself - hope you can get some help.

Deb

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