A forum for any other issues around pancreatic cancer

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farmers wife
Posts: 15
Joined: Fri Apr 20, 2012 4:55 am

Re: Reluctance

Postby farmers wife » Thu Aug 09, 2012 2:30 am

Thank you Deb, I really appreciate your kind words.

It is the love, care and encouragment of all the loving people that leave messages on this forum that has kept me going, especially in the dark of night, when I am up and in dispair, wondering what to do next.

Love, Karen x

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Reluctance

Postby rachelqt » Tue Aug 14, 2012 11:09 am

Hi Karen,
I am deligthed you are getting closer to your answer and it seems more positive that it can hopefully be treated!!
I agree with Deb that you are an inspitation as many of us would feel like a nuisance after the many knockbacks you have received by doctors.
I will keep you in my thoughts and prayers that you will get relief soon.
Keep us posted on your journey
Much Love..Rachel xx

GunnarG
Posts: 26
Joined: Mon Oct 15, 2012 9:43 am

Re: Reluctance

Postby GunnarG » Mon Oct 15, 2012 11:30 am

I know just how u feel farmers wife. ive jumped to the same conclusion as you. cancer in the body or tail of pancreas. the doctors say there is nothing wrong on ct or mr.
and that i should try to relax.
they wont do anymore investigations.

My symtoms are: Loose pale stools ,(sometimes in big quantities and this symtom is also my most concern)
Weightloss 12 kgs. and i cant get them back on. ive tried for months!
some small almost unoticable pain in back.(feels like the back is tired.)
uppper stomach cramping like pain. (comes and goes ,also moves around in stomach location)
Loss of appetite and feeling generally very very unwell. no power left in me.

Seems like no matter what i eat i wont gain any weight from it.
i have started taking creon 25000 without the doctors advice. and the scary thing is that it helps calm down the stomach and make stools firmer and looking more normal.
i now cannot eat without taking this capsules. this is like a nightmare and i have put my life on hold for several months now. i really do not know what to do. as the doctors say that if i come back with pancreas talk anymore they wont see me.(my gp actually was on the verge of going the legal way of removing me as patient from his list.)

is this acceptable?

i am 28 years old live in norway have 2 sons and i feel abandoned.
my family dont even believe me. leaving me no choice but to do this on my own, i just know i do not have much time figuring this out.

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: Reluctance

Postby PCUK Nurse Jeni » Mon Oct 15, 2012 4:58 pm

Hi GunnarG,

Sorry to read about your story.

Please do email us at support@pancreaticcancer.org.uk, and we can try to help you hopefully.

Kind regards,

Support Team.

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Reluctance

Postby DRAD3 » Mon Oct 15, 2012 6:10 pm

Please contact the support team. This sounds very frightening for you and I can understand that you must feel quite unsupported and alone. This is totally unacceptable and I do hope that someone can help you soon. Wishing you lots of luck and the strength to keep on trying to find an answer.
love
Deb
x

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Reluctance

Postby susikus » Mon Oct 15, 2012 7:29 pm

This sounds very scary for you GunnarG and it feels like you feel quite alone. You mention you live in Norway - I know nothing about the doctor system there - but you also mention the doctor doing the legal thing to get you removed. Is there an option to swap doctors anyway? It seems like you've had some investigations done - talking to the team at pcuk would be enormously useful I am sure - I hope you do - because talking to people who know what you're talking about is priceless.

And Karen, how are you getting on - it has been really quite a battle hasn't it? I'd love to hear if you're further forward

Best wishes to both of you
Sue

GunnarG
Posts: 26
Joined: Mon Oct 15, 2012 9:43 am

Re: Reluctance

Postby GunnarG » Tue Oct 30, 2012 10:00 am

Hello again. i went to private doctor and im scheduled for a new mri on thursday.
i also forced my gp to send me to do an Eus. so im to get an appointment for that within 25 november.
dont know if this is a good procedure in body tail pc cancer .
the loose stools are now turned into somewhat firm but i no have fewer bowel movements and more pain after eating (on left side both stomach and back ,also a general upset stomach kinda pain throughout the day.. ive also stopped using creon for a while to se what happens.(maybe thats the reason for pain escalation?)

feeling generally not good but not bad ,just very apathic and depressed.(im used to depression cause of my tourettes adhd, but this is a different kind of depression ,as depression usally cause me to eat a lot and gain weight!)

however im know so sure what this is that if i could i would get my self operated.

GunnarG
Posts: 26
Joined: Mon Oct 15, 2012 9:43 am

Re: Reluctance

Postby GunnarG » Tue Oct 30, 2012 10:04 am

it should be the doctor orderig this tests ,and finding out my next steps not me.

GunnarG
Posts: 26
Joined: Mon Oct 15, 2012 9:43 am

Re: Reluctance

Postby GunnarG » Tue Oct 30, 2012 10:08 am

my lust on life is zero.

GunnarG
Posts: 26
Joined: Mon Oct 15, 2012 9:43 am

Re: Reluctance

Postby GunnarG » Tue Oct 30, 2012 2:00 pm

like i couldt get more freaked out now my poop suddenly goes kinda light grey/greenish :!!

PCUK Nurse Dianne
Posts: 273
Joined: Tue Aug 14, 2012 3:29 pm

Re: Reluctance

Postby PCUK Nurse Dianne » Tue Oct 30, 2012 2:24 pm

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

GunnarG
Posts: 26
Joined: Mon Oct 15, 2012 9:43 am

Re: Reluctance

Postby GunnarG » Wed Oct 31, 2012 9:39 am

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

GunnarG
Posts: 26
Joined: Mon Oct 15, 2012 9:43 am

Re: Reluctance

Postby GunnarG » Tue Nov 06, 2012 1:55 pm

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.

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Reluctance

Postby DRAD3 » Tue Nov 06, 2012 7:08 pm

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
x

farmers wife
Posts: 15
Joined: Fri Apr 20, 2012 4:55 am

Re: Reluctance

Postby farmers wife » Fri Nov 09, 2012 5:07 am

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