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waiting for diagnosis


littlesister
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Hello

Not new here, I sought support and advice over a year ago when my big brother had PC and sadly died a year ago in August.

I have had IBS well, forever but had a really bad few weeks in June/July. Had barium enema which was inconclusive was offered "if I wanted" a CT scan which I did want. I had that a week ago on 02.12.2013 on Thursday I had a call from xx Hospital to tell me they saw something around the duct on my pancreas but don't know what it is and had sent the scan that day to xx in xx which they told me was a centre of excellence for all to do with pancreas. Woman I spoke to was unaware of the loss of my brother to this disease and loss of sister to bowel cancer and was very distressed and said she would ring me today to check I was OK.

Not unnaturally I am going out of my mind. Coping well outwardly and naming the elephant in the room but last night I had less than 1 hours sleep, the night before it took a great deal of wine and a sleeping pill to get off to sleep. I obviously dread and hate the possibility of a diagnosis of PC but the not knowing is worse. I know nobody on here can give me a diagnosis but I needed to share this with those who have had close contact/experienced this disease.

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Hello littlesister, I only joined the forum early this year so am unaware of your back story but want to say how sorry I am you lost your dear brother. My husband was diagnosed on 4 March and sadly, died on 12 October so am well aware of the devastation this disease brings for everyone involved with such a diagnosis.


I can well understand your concerns over the results of your scan as there can be a familial connection. I have everything tightly crossed your results will be more positive than you are expecting. You will know that we are all here to listen at any time.


For anyone else reading do be aware of the Europac Study (The European Registry of Hereditary Pancreatitis and Familial Pancreatic Cancer). You may be eligible for free screeining.


http://www.europac-org.eu/


Very best wishes littlesister,

Julia x

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Hi there,

I am so sorry to hear that you are going through this. Really hope that you hear back soon and that your fears aren't realised. My husband has pancreatic cancer, and the thought of anyone else in the family going through this is pretty unbearable,

All the best,

Nikki

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Hi Littlesister,


I know having just lost my mom that if I got diagnosed or even thought I 'may' have this disease I would be utterly horrified, so I can't imagine what you are going through after watching your loved one succumb to the same disease.


I wish you all the luck in the world that this is something easily healed or that it is pancreatitis or at worst if it is the dreaded that they have caught in very early, enough so that they can do something about it...my heart goes out to you and please please let us know what happens, I know its easy to say don't panic, but how can you not. I hope they hurry with this for you..


Hugz n Love

Marie

xx

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Well heard from person at hospital at 5.45pm She is the Upper GI Cancer Specialist Nurse! Little doubt there then. Apparently my scan from last Monday went to the multi disciplinary team on Thursday and was sent off to xx the same day and then the specialist nurse rang me. She told me that she had been shocked when speaking to me because most people she has to ring aren't even aware of the pancreas?? let alone the significance of any shadow/mark etc., or my brothers' diagnosis and death and surprisingly, had she known she may well not have rung me to put me in the picture,such as it is!

So it seems the multi disciplinary team in xx are likely to discuss this on Thursday and I should hear from them but she did say I could ring her at any time.


I'll fill in details when I know more. Sleeping tabs and a bit of wine for me tonight then can't bear another sleepless night.

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I am so sorry to hear this, and know there is nothing that anyone can say that will make this any better. It does sound like you have an efficient team there, so hopefully that is going to make a difference as you fight this battle. Hope you manage to get some sleep.

Thinking of you,

Nikki

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OH MY GOD!!!!!

But like Nikki says .... Kudos to the team you are under as this will make a massive difference to your battle if this is the case .. I have everything crossed for you and will have some wine tonight and wish you a sleep filled night xx

Will check on here Thursday for your response..


Good luck my love


Hugz

Marie

xx

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Thank you, sweet posts, for this hard bitten biddy, made me feel a bit tearful but as usual so impressed with humanity. Off to bed, filled with red wine (oh yes mediteranean diet, don't want althzeimers do I?) and a sleeping pill.

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Hello Littlesister,

So sorry to hear this. My husband battled PC earlier this year and was referred to xx in xx. The specialist nurses there were excellent.

Take care,

Hilary

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Well system seems to be very supportive, just spoke to GP - don't know him well as only moved here a couple of yers ago and seem to see different doctor every time.

He was pretty shocked, especially since I was referred last June, he didn't try to give me all the BS about lets wait and see. He is putting me on their priority list so that I can talk to him anytime or visit or be visited. He has promised to ring me the moment he receives any communication or information. I also asked him about what is meant by being 'fit' enough for any possible procedures as I have a number of health issues. He was reasuring saying that that largely referred to a person of very old age and that anaesthetics these days are very good so that if surgery were a possibility it is unlikely to be ruled out due to lack of fitness. Feeling reassured. Only problem is have just had m. daughter on phone all tearful, doesn't want to talk to anyone about this. For me to tell people not to talk to her about it util we have full diagnosis!!

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aw well thats great that your doctor is so supportive, believe me the receptionists do get to know you as well over the phone, they should see the priority on their systems, he seems like the kind of doc u need to have ... your daughter sounds traumatised...i know it too well I was the same with my mom ... give her time how old is she?


hugz and love

Marie

xx

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Marie, this daughter is 43, All three handle things differently. She is my vulnerable one, the other two are petty strong and particularly the eldest who will certainly support and guide her.

I have to constantly remember that people are all different. I have never been able to hide my feelings and I am afraid probably overshare but I guess that is my way of coping.

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Hi Hun,


well I'm 47 and my sis is 46 and we are so different, she couldn't cope with my mom at all hence 99% of her care was done by me, she wasn't clued up on anything and I couldm't even ask her to ring the chemist to ensure delivery of important meds...frustrating as it was I had to accept that we are different and I am a coper and she wasn't. Also as a mom myself, my daughter is 23, I was crying over my mom last night, at things that happened during her 8 and a half mth battle and she just didn't know what to do .. I needed to offload and she just wasn't the one to offload to .. sometimes you just need someone who is going to nod a lot and some people just don;t have that ability to just listen ... she will cope better as time goes by its probably not even sunk in yet and if it doesnt come naturally to cope then you do struggle but you do have 2 other 'strong' daughters so although you love all your children equally it is great that these other two will hold you up as much as they can in the meantime... how are you doing today? Did you manage to sleep any at all?


love and hugz

Marie

xx

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slept like a baby thank you, aided by my usual friend a nice red wine and a sleeping tab. I didn't wake until 10am and am pleased to report that yesterday I vacuumed the flat, have almost finished wrapping christmas presents and amazingly yesterday and today actually made my bed. Was going for a swim today but have a heavy cold so I think I will give that a miss. Amazing how the brain manages to give a proverbial kick up the a*@e. I do spend hours on the phone and am so lucky to have close friends, and one in particular, who I can share any though with without her flinching. My middle child has had a lifetime of dealing with health issues and their partner depression, so it is n wonder she is the one struggling so. But as you say she has her sisters and I too have them.


Thanks for your care and patience Judi

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Hi All


What a burden you are bearing after the loss of your "Big Brother" to this most pernicious of diseases. Family support and unity is a great source of well-being but of course, like true love, family life often fails to run true. I do hope your daughters find the strength to support you at this very worrying time though it sounds as though you are in good hands medically and that makes such a vital difference. I'm so lucky with my very loving son and daughter and of course my dear wife even though she still finds it difficult to accept my prognosis and remains in denial as the eternal "cock-eyed optimist" who won't even consider the possibility of my condition eventually deteriorating. Still there is no harm in that as it's impossible to ignore her cheeriness and as they say "Where ignorance is bliss....".


Just waiting for my beautiful daughter to whisk me off into town to clear out my few personal effects from my office where I need to sign my official retirement letters to my clients. Just a bit jaded after (for me) a late night in town at my club's Christmas Party. very nice meal, good speaker and the pleasure of seeing many old friends - such a morale booster but 11.00 p.m. is well after my usual bed-time!


No chemo this week under the "off trial" regime and now I don't even have to attend for blood tests this week so I'm busy planning a revisit to Lanzarote early March during such a week off before the fares and temperatures start to climb too much.


Love and Peace


Mike

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I hope that like you Mike, I will soon feel able to plan a holiday, who knows. I hope it is a antastic holiday and that you feel fit enouh to really enjoy it.

Today is my day I think to find out more. My dilemma is a ver close friend lost her elderly mother yesterday and I want to go over with flowers and a shoulder for her to cry on. She has absolutely no telephone signal there and I await tha fateful call from xx. Wonder, if a message giving another number would work if there is no signal???

Think I willgo early maybe won't miss a call then.

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Good luck today - I'm sure we're all right behind you and hoping for good news. Should the worst case present itself then again, as you know, the Forum family will be here for you whenever you need to vent!!


Would hope that you'll be dipping those tootsies in the deep blue somewhere soon and enjoying a nice glass of vino celebrating feeling much better.


Love and Peace


Mike

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Still waiting, driving me mad must have had their meeting by now. Will wait until 3pm and then phone specialist nurse at Cheltenham to see if she has heard anything or can find out for me.

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now really getting agitated. I was told the MDM would be this morning. It is exactly a week since I first had an inkling that I could have the dreaded PC and I would have thought that this morning's meeting would have, at the least decided on the next step. I certainly would have thought that would have been relayed to me today, especially as I was told when and where they would meet. Oh well there is always tomorrow.

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So frustrating for you, they just don't get how important these calls are to people. I would get on the phone at 9, you don't want to spend the weekend not having spoken to someone.

Thinking of you,

Nikki

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Hey Judi,


Can't believe they haven't rang you .... All that waiting with your nerves in bits .... I reckon my love u deserve a cheeky lil extra glass of wine ... Look how thoughtful u r and all the guys on here mike inc having time for others when your facing something so huge ... Mike ur work party sounded gd ... Glad ur off to lanzarote again .... Ur wife sounds amazing if I haven't said it before ... Let us know if u hear anything tomorrow its not on your having to wait like this Judi


Love n hugs

Marie

Xx

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