A forum for family, friends and carers of pancreatic cancer patients

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lisa42
Posts: 10
Joined: Sun May 04, 2014 8:57 pm

New to this - any support gratefully received

Postby lisa42 » Tue May 06, 2014 9:16 pm

Good evening everyone. My 74 year old mom was diagnosed with a 3cm tumour in her pancreas last Thursday, and has been in hospital since then. I'm devastated by the news, and scared of the new pains and feelings she experiencing. She has been told that it is operable but I'm scared to believe this until the specialists at the hospital she will be moved to confirm this. In the days she has been in hospital she has lost an unbelievable amount of weight, and really aged. This time last week she was running around with my 3 year old daughter, and working at our local hospice. She has a drain in at the moment to let the bile out, and there has been gallons of the stuff, but it seems to have slown down now, but she is getting terrible acid indigestion and feeling nauseous.
Any comments or shared experiences to help me through the coming weeks and months will be welcomed. Thank you.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: New to this - any support gratefully received

Postby Didge » Tue May 06, 2014 9:35 pm

Welcome to the forum, Lisa, but sorry you have to be here! I'm hoping your mum's move to the specialist hospital will be more or less immediate. if not, push for this as time is of the essence with operable tumours. But it's good news that it looks like it's operable as this is the only way to cure this thing so I'm keeping my fingers crossed for you. You will find lots of support here for the good and the bad times ahead.

lisa42
Posts: 10
Joined: Sun May 04, 2014 8:57 pm

Re: New to this - any support gratefully received

Postby lisa42 » Tue May 06, 2014 9:41 pm

Thank you for your reply. I'm hoping she will be moved by the weekend at the latest. Such worrying times.

jules 2015
Posts: 55
Joined: Mon Sep 23, 2013 10:20 pm

Re: New to this - any support gratefully received

Postby jules 2015 » Wed May 07, 2014 5:37 am

I am so sorry to hear your news but you have definitely come to the right place for some sport,
I know how scarey this disease can be having lost my dad to pc in Nov but would encourage you to carry out all the research you can do to give you more time with your mum, my heart goes out too you. Try to keep strong and post on here as often as you need to, your forum family will be here to help as best we can
Julie x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: New to this - any support gratefully received

Postby Cathy » Wed May 07, 2014 12:11 pm

Hi Lisa

I'm sorry to hear of your news but so good to hear that they think your Mum is operable. This is hopefull news indeed.

There is a lot of information already on this forum with some people here who have had operable PC (pancreatic cancer). Also the support nurses here are very supportive and a mine of useful inforation and tips. You can email them on support@pancreaticcancer.org.uk

All the very best

Cathy xxx

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: New to this - any support gratefully received

Postby sandraW » Wed May 07, 2014 7:59 pm

Hi Lisa,
Welcome to the forum,my husband had a sub=total pancretectomy in September last year, his tumour/cyst was in the tail of his pancreas, so he had his spleen removed too, but he didn't have the problem with bile that your mum has. He is 67 and was in hospital for just 7 days, he took it easy but was out pottering the garden after 4 weeks. He has just finished 12 cycles of chemotherapy, half way through we found there was spread to his liver, so 2 more drugs were added to his chemo, we are now waiting the results of his scan. I hope your mum gets moved to the other hospital soon but I know they can't do anything, until they get the levels right with the bile, and gets her operation soon.take care sandrax

Fifi

Re: New to this - any support gratefully received

Postby Fifi » Wed May 07, 2014 9:20 pm

Hi Lisa,

Like others have said, sorry are here. It's horrible posting for the first time isn't it? I will give you the advice that people gave me when I first joined here. Ask questions. Don't be afraid to question them. Buy a notebook, and take it with you everywhere. If you think of a question, write it down and then ask it. Doctors/oncologists, just tend to give you the basic news. They don't want to go into the whats and hows and ifs and buts. Ask. You'll be pleased you did.

xx

lisa42
Posts: 10
Joined: Sun May 04, 2014 8:57 pm

Re: New to this - any support gratefully received

Postby lisa42 » Wed May 07, 2014 9:47 pm

Thank you to all that have replied. I'm so glad i found this site. I'm finding it be a great source of information and comfort. Good to know you're not alone when the demons arrive !

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: New to this - any support gratefully received

Postby LMD » Thu May 08, 2014 11:08 am

Just to say hi - like you I'm fairly new to posting on here too. (Since we found out my father has PC I have been reading lots on here though - this forum is so helpful)

Sorry to hear of your mums diagnosis - how is she now? Hopefully when the bile level has improved, she will feel better...

Advice wise, I would reiterate what others have said, plus try to take each day at a time.
xxx

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: New to this - any support gratefully received

Postby Janiebobs » Thu May 08, 2014 5:07 pm

Good luck to you and your mum. This forum is very informative and excellent support network. PC is so nasty I m so pleased they have found it in time with your Mum
Jane

lisa42
Posts: 10
Joined: Sun May 04, 2014 8:57 pm

Re: New to this - any support gratefully received

Postby lisa42 » Thu May 08, 2014 10:17 pm

I would be grateful of any experiences from you all when first diagnosed. Am I alone in feeling that things just aren't moving quickly enough? I was told by a staff nurse today that my mom wouldn't be looked at as a priority because of her age, and then given a story of someone much more deserving because she was 37 with 2 young children. I came away from hospital today feeling as though my mom had been written off. I was then told by a doctor ( qualified for 7 months) that the doctor that had diagnosed mom ( a man in his 60's who is considered an expert) that he should never have said that mom was operable, as that was up to a surgeon to decide. A very emotional day, that has left me feeling that I can't believe anyone.

Fifi

Re: New to this - any support gratefully received

Postby Fifi » Thu May 08, 2014 10:33 pm

Hi Lisa,

Your post does anger me. It is absolutely disgusting what you have been through today. As if it isn't enough that your mum has cancer. I'm sorry you have been treated that way.

My dad was told, alone, that he had a dark shadow on his stomach. We were both told, by his oncologist that it was pancreatic cancer that had spread to his liver. That was a shock. His oncologist did apologise for the way he told us, as he thought we already knew. Up to being diagnosed, it took months. No one cared. I have no faith in the medical profession. My dad is taking part in a trial, and the research nurse is the only person I feel I can safely turn to. Poor man isn't even a doctor, and yet he will pass all my queries on.

I don't think they are moving fast enough for your mum. I think you need to make some phone calls tomorrow and get your mum a oncologist for starters. You need someone who can answer your questions. Pancreatic cancer doesn't have time to waste.

Good luck, please keep posting.

xx

Just something to add here. When my father in law was 77. He got prostrate cancer. The hospital told him he had no hope and best not to have treatment. Other words, too old! My mother in law demanded he have treatment. I know it is a completely different cancer, but he is 82 now, and has been in remission for 3 years.

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: New to this - any support gratefully received

Postby Janiebobs » Fri May 09, 2014 12:20 am

My dad's PC journey began just before Christmas when I collected him and Mam to come and stay with me, he was very jaundiced so I took him to my local walk-in centre and from there he was admitted to hospital. He had scan on Christmas Eve but discharged him without telling us anything but with a letter for his GP who we saw in New Year. All this meant diagnoses and seeing various consultants was delayed. His gastro consultant was negative gave dad diagnosis of advanced PC and stated he thought Dad was too frail for Chemo. We asked for a stent to drain bilirubin (just because what we had gleaned from this site) and when that was being fitted he had a biopsy which was negative. My Dad wanted a second opinion and he saw an oncologist and urologist who have both implied age doesn't come into it he has a right to nhs treatment (I think more right as he contributed all his life)
One consultant in mdt meeting had suggested operating on dad to see if could remove tumor But oconologist advised against as very serious op and dad is very frail .
My Dad has been very lucky with his Nhs care both when in my local hospital and in his own area. He is not in pain, using creon with meals has led to putting a bit of weight back on. The chemo has resulted in cellulitis in his lower leg which is a still a worry.
I have found the information I have got from this site invaluable and as we have seen many times PC is difficult to diagnose
Jane

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: New to this - any support gratefully received

Postby Didge » Fri May 09, 2014 7:23 am

My partner was finally diagnosed by his GP after a CT scan. he then chose his hospital, one of the specialist centres you can find on this site, asked his GP to refer him and then phoned the hospital every day to try to get an appointment. He got it 2 weeks later which was a week too long in our opinion. The surgeon decided it was operable but if he'd been diagnosed earlier it would not have spread to the lymph nodes. It was undiagnosed for a couple of years after symptoms started and it took a few months after severe pain started before GP finally thought 'pancreas' even though his mother had died from the same thing. You really need to get the MDT team at a specialist centre to consider your mum as soon as possible. This will need chasing them every day!

lisa42
Posts: 10
Joined: Sun May 04, 2014 8:57 pm

Re: New to this - any support gratefully received

Postby lisa42 » Sun May 11, 2014 2:42 pm

Thank you. Your responses empowered me to take control instead of waiting on hospitals decision. Mom has an appointment on Friday at XX in xx , and I am going to insist they discharge her from hospital this week with a district nurse, as they only have her in to flush her drain 4 times each day (she has a bile drain in), and most days they only do it twice. At least if she's home she can have proper rest and food.