A forum for any other issues around pancreatic cancer

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marie souter
Posts: 198
Joined: Thu May 30, 2013 6:58 pm

Re: waiting for diagnosis

Postby marie souter » Fri Dec 13, 2013 3:25 pm

Hi Judi,

Yeah you deffo need to follow that up honey since its what the doctor wants and if I was you I would most defintely want that quadruple checked to completely rule it all out.
In the meantime am here for you should you feel the need to talk.
But heres to a much more relaxed weekend cos you deserve it after the week you've had my love.
If I was there I would be supplying you with a huge bottle of wine and a straw ... (one bottle each of course haha.. x)
So pleased they rang you today did they say how long its going to take for this endoscopic scan?

Back to looking forward to xmas for you eh xx

Love and hugz
Marie
xx

littlesister
Posts: 85
Joined: Fri Jun 22, 2012 2:18 pm

Re: waiting for diagnosis

Postby littlesister » Fri Dec 13, 2013 3:48 pm

Well now had a call from Birmingham Specialist Nurse, who says that there is obviously something to be investigated but not necessarily sinister - so although not an all clear and I know there is something not quite right, I am feeling a bit more optimistic but also like I've been through the ringer.

marie souter
Posts: 198
Joined: Thu May 30, 2013 6:58 pm

Re: waiting for diagnosis

Postby marie souter » Fri Dec 13, 2013 3:52 pm

hells yeah you have and then some, there are so many other possibilities of what this could be .. what are your actual symptoms Judi?

Love and HUgz
Marie
xx

littlesister
Posts: 85
Joined: Fri Jun 22, 2012 2:18 pm

Re: waiting for diagnosis

Postby littlesister » Fri Dec 13, 2013 7:14 pm

Marie, quadruple?

marie souter
Posts: 198
Joined: Thu May 30, 2013 6:58 pm

Re: waiting for diagnosis

Postby marie souter » Fri Dec 13, 2013 8:30 pm

hehe had to check that up cos I thought did I make that up? Like checked x 4 times :)

xxxx

littlesister
Posts: 85
Joined: Fri Jun 22, 2012 2:18 pm

Re: waiting for diagnosis

Postby littlesister » Wed Dec 18, 2013 12:40 pm

Catch up first Specialist nurse from Cheltenham who on Friday said "pancreas normal for omean of my age", left a message Monday to tell me that which I already know that I am having the endoscopic ultrasound !! Since then I have spoken ith Spcialist Nurse from Birmingham who has said she will check daily to see if an appointment has been allocated and will ring me to let me know. Still in dark, still working out how to complain about the initial contact, whether I do it now or wait until after I have a proper diagnosis. Perhaps others on here will have a view.

marie souter
Posts: 198
Joined: Thu May 30, 2013 6:58 pm

Re: waiting for diagnosis

Postby marie souter » Wed Dec 18, 2013 5:48 pm

Hi there,
Sorry to hear you're still waiting....
I think feedback/complaints should be given when you feel you need to do them, regardless this could be valued information/training issues and will be dealt with accordingly .. you should be able to do this through PALS http://www.uclh.org/PandV/Helpandsuppor ... /Home.aspx
hope you hear soon honey

love and hugz
Marie

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 10:53 pm

Re: waiting for diagnosis

Postby belgrade » Wed Dec 18, 2013 11:49 pm

Hi,
I have posted before saying how helpful the specialist nurse was when my husband was referred to Birmingham. When he was finally seen and tests carried out, the consultant was also excellent. However, it took almost 4 weeks for him to get an URGENT referral appointment which had been requested by our local hospital, then a further 3 weeks before endoscopy, scans etc. were carried out. I made a formal complaint to QEB in July about the poor communication between hospitals and the lack of urgency on their part, and was informed by letter that my complaint would be investigated and I would receive the result by August 20th. I received a letter mid september ( 3 days after my husband died) saying there was a delay but I would receive their full response by mid October. In November, I had a further letter appologising for the delay, followed by another letter 2 weeks ago informing me that their investigations were complete and the response was just waiting for the CEO's signature. Still waiting!!!!! I find the irony of this quite amazing as the focus of my complaint was on poor communication and delay!!! So my advice would be, make your complaint now as it could be some time before you receive a response.
Hope things go well for you,
Hilary

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: waiting for diagnosis

Postby J_T » Thu Dec 19, 2013 9:10 am

Hi Hilary, oh my word! Shocked - not! I have yet to put my complaint on paper but I have made notes and the gist of it is poor communication! After I left a review on the hospital website there was a counter message from PALS asking me to contact them. I rang twice but no answer twice and then I thought what will they do? Listen and learn? That old political cliche. No, I think I will make my complaint straight to the CEO of the hospital.

Hope you are doing okay?

Julia x

littlesister
Posts: 85
Joined: Fri Jun 22, 2012 2:18 pm

Re: waiting for diagnosis

Postby littlesister » Thu Dec 19, 2013 10:08 am

Marie, Hilary and Julia, I have taken advice and just emailed Pals. I may well take up your suggestion Julia and write to the CEO. I will wait for the PALS response. I have made notes, especially of the chronology of all this but it is all so convoluted and frankly I feel addled.
Judi

littlesister
Posts: 85
Joined: Fri Jun 22, 2012 2:18 pm

Re: waiting for diagnosis

Postby littlesister » Thu Dec 19, 2013 10:57 am

For others wishing to contact PALS, the link above is for London Hospitals, it is necessary to go to the relevant Trust's homes page to find the local PALS office.
Judi

littlesister
Posts: 85
Joined: Fri Jun 22, 2012 2:18 pm

Re: waiting for diagnosis

Postby littlesister » Thu Dec 19, 2013 1:20 pm

Got an immediate reply from local trust PALS, asking if I would like them to have a quiet word with the nurse concerned or an enquiry? You may have guessed I have opted for the latter, whether this misinformation/too much information/too little information over the top emotional response etc., etc., is the nurses fault or not, the trust is responsible for training and management.

littlesister
Posts: 85
Joined: Fri Jun 22, 2012 2:18 pm

Re: waiting for diagnosis

Postby littlesister » Thu Dec 19, 2013 3:00 pm

consultant at Birmingham's secretary rang me to tell me edoscopic ultrasound 10th January. Ordered on 13th December - that seems a long two weeks? xmas I suppose?

littlesister
Posts: 85
Joined: Fri Jun 22, 2012 2:18 pm

Re: waiting for diagnosis

Postby littlesister » Fri Dec 20, 2013 11:04 am

Something been keeping me awake, despite sleeping pills, so spoke to Birmingham 'special' nurse. The confusion was the comment by the Cheltenham special nurse to my daughter that looking at pancreas consultant decided 'normal for a woman of my age'! Now apart from the CT scan supposedly being corrupted thereby not easy to read, I needed to know whether there was something worrying or if the endoscopic ultra sound was just to be sure the consultant who made this comment was right.
Special Nurse (Birmingham) read the consultants letter to me which says there is swelling of the duct on my pancreas - now wondering if that is "normal for a woman of my age"?

marie souter
Posts: 198
Joined: Thu May 30, 2013 6:58 pm

Re: waiting for diagnosis

Postby marie souter » Fri Dec 20, 2013 4:30 pm

Hi Judi,

I know it would be keeping me awake as well, things mull around a lot....especially in the wee hrs..
I think 3 weeks is it for your next scan appt? So it looks like really its a wait and see thing ... excrutiatingly long time to wait when you have all of these worries on your mind. Theres no point in me saying don't worry. But I think perhaps just try your best to fill your time til then.
Glad you put your complaint in....I used to make notes when my head got addled as I was frightened I would forget something important, then piece it together later when I felt less stressed ...
Thinking of you loads honey

Love and hugz
Marie
xx