waiting for diagnosis

[littlesister]

un-flipping believable. I have heard nothing kept ringing speciaiist nurse no. no luck found number for specialist nurses at xx rang, spoke to nurse explained situation. She checked and said I wasn't on the list for yesterday's MDT meeting! She would find out what she could. My daughter found out who the consultant was the scan was referred to [name removed - moderator], his secretary is not available. The first specialist nurse I spoke to it seems doesn't work on a Friday - so likely prospect is another week-end on tender hooks.

I cannot fathom why the specialist nurse rang to tell me about xx MDT meeting last week and the suspicions thrown up by the scan and then leave me without info.

I am going to try and speak to my GP and see if he can chase up and find out what is happening today. Any other suggestions would be welcome.

Judi

[littlesister]

latest bulletin, daughter now managed to speak to fist specialist nurse: seems that scan incorrectly transmitted, discovered last Monday it was blurred - that is why it didn't go to MDT on Thursday but NO ONE bothered to tell me. Consultant had a chance to look at it but does have to take it to next week's MDT however,did give a view which s nurse reluctant to share but daughter pushed and pushed and nurse did say he thinks I DON'T HAVE PC! Daughter blew stating that I/we obviously thought I had PC so now unless th MDT say otherwise I am taking it that I don't have it phew...

[PCUK Nurse Jeni]

Hi Judi,

So sorry to hear about the time you are having right now. This is very unsettling for you.

It could be that your case was discussed at the Local MDT and not the specialist MDT (SMDT), which would be the link with xx? Just a possibility, as there is a difference. The local ones should link into the SMDT, but it could be that this is what they are referring to?

I am sure that they will let you know after next weeks meeting - have you requested a phone call after the meeting to keep you informed? Fingers crossed for you!

Kind regards,

Jeni.

[marie souter]

Judi,

WOW WHAT NEWS!! Wasn't expecting that this morning..

Oh I hope and pray that this is the case, I used to say to my sis how great would it be if they had got it all wrong for my mom. I would allow myself for a few seconds to imagine what that would feel like .. and immense relief was out of this world...When's this meeting taking place...and like Jeni said are they ringing you after?

I got everything crossed for you ... MY GOD JUDI IMAGINE?

Oh I really hope

Bits crossed that are really uncomfortable to be crossed but r crossed anyways

Love and Hugz

Marie

xxxx

[littlesister]

more info xx consultants' secrtary just rang me to tell me she had explained what had been going on. He has again looked at the CT scan and decided I need an endoscopic ultrasound. Doesn't seem anywhere near as scary as what has gone on over the past week.

[marie souter]

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]

Well now had a call from xx 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]

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]

Marie, quadruple?

[marie souter]

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

xxxx

[littlesister]

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 xx 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]

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/Helpandsupport/PALS/Pages/Home.aspx

hope you hear soon honey

love and hugz

Marie

[belgrade]

Hi,

I have posted before saying how helpful the specialist nurse was when my husband was referred to xx . 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 xx 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 apologising 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]

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]

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]

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]

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]

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

[littlesister]

Something been keeping me awake, despite sleeping pills, so spoke to xx 'special' nurse. The confusion was the comment by the xx 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 (xx) 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]

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

[littlesister]

Thanks Marie

Lovely lunch with close girlfriends today, so feeling very loved. (Didn't much go for my slightly hippyish and lovely mad friend telling me she had candles lit all over her house for me, but she had consumed a whole bottle of champers by then - I am not a daytime drinker, perhaps that's the problem!!!)

Judi

[marie souter]

Aw your friends sound lovely and just what u need right now x champers in the day? Y the hell not he he I say lay caution to the wind ... Have a glass or 10 and put the world to rights ... Aw miss my girly days .... Ur friend sounds like she's doing all she knows how to send positivity your way and white candles are healing candles from what my wickan daughter tells me .... Can't hurt can it .... Unless the house catches fire ... Yikes .... What u got planned for the weekend?

Love n hugs

Marie

Xx

[littlesister]

Not a fan of champers. Afraid I have not filled week-end up, have to preserve my strength. I have a number of mobility issues on top of this latest scare so I tend to have to conserve energy but I might, just might go for a swim this afternoon. Been weeks and what is the point of my gym membership otherwise? Have yo got a packed week-end of fun or is it all Christmas shopping?

Judi

[cestrian]

Hi Judi

Taking every day as it comes is essential! I was like a rag yesterday but just put it down to the Mugga Scan and Chemo I'd had on Wednesday followed by a tiring day in town on Thursday! Today I am mainly watching and listening to football after a good 12 hours of refreshing sleep last night. Chester 2 - 1 up but alas reduced to 10 men by dubious decision from referee!!

Take it easy but if you do get to the gym enjoy your swim.

Love and Peace

Mike

[littlesister]

Hi Mike, hope you are feeling a little better. Glad the football's helping, 'tho you might as well be writing in Cantonese as far as my ability to understand the words go.

Would have gone for swim but picked up post with a copy of a letter to my GP and local consultant from Consultant in xx and am now feeling so desolate and self obsessed. Seems two areas of my pancreas are the subject of the proposed endoscopic ultrasound. It would arrive on a Saturday when there is no-one available to interpret his findings and no chance of understanding the consequences/likely or possible outcomes of these two areas of concern. By the way what is a Mugga Scan?

Judi