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

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mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Feeling Alone

Postby mogs » Wed Feb 26, 2014 6:12 pm

Hi. I just wanted to introduce myself even though I cant still quite believe that I am posting on this forum.

My mum (67) was diagnosed with pancreatic cancer last week, and at the moment I feel as though I am in free fall and just want to hit a pause button. She is never ill (rarely catches a cold) but has been unwell since last October. She had been to see the doctor on several occasions who thought it was a build up of acid in the stomach. Since Christmas she had pain in her side which then moved to her back.

We eventually got her admitted and they run tests and a CT scan. She was told, (by her consultant), that she had a lump on her pancreas and that she was being referred to a specialist team in another hospital (who would write a report). They sent her home with pain relief but no-one mentioned the word cancer. We had a dreadful week trying to get her pain relief under control. Whilst speaking to the doctor about her medication, he let slip that she had pancreatic cancer as he presumed the consultant had told us. Obviously we were all shocked and couldn't quite believe the news. The gp told her it's in the body of the pancreas and inoperable. It has also spread to her ovary. I feel we have been left on our own, (for a week now), to cope with this devastating news. No-one has spoken to my mum at all.

We are meeting with the consultant tomorrow to find out more and hopefully what her options are. My mum is unaware of the survival rates of this awful disease and at the moment I'm struggling with staying strong and hiding what I have read from her. Thankfully I have stumbled across this site and reading your posts have made me realise I am not alone and given me hope. Thank you for that. I have a feeling I may be lending your support in the difficult weeks to come. Its comforting to know there are people like you out there.

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

Re: Feeling Alone

Postby J_T » Wed Feb 26, 2014 6:39 pm

Hi mogs and welcome. So sorry to hear of your mums diagnosis. Too often patients feel abandoned, we did, it was only at the insistence of our GP that we finally saw an oncologist so I know how you are feeling.

Hopefully you will have a good meeting tomorrow and your onc will have a plan of action. Not to raise any false hopes but tumours can become operable after a successful course of chemotherapy, fingers crossed your mum is able to undergo treatment and it works well for her. You are lucky to be treated at a specialist centre,they should be on the ball,treatments can vary greatly depending on where you live.

Good luck and keep us posted on your mums progress. Specialist nurses on here will be an invaluable help to you, don't be afraid to contact them if needs be.

Julia x

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: Feeling Alone

Postby Dollysdaughter » Wed Feb 26, 2014 6:45 pm

Hi,and firstly I am so sorry that you had to hear the bad news about your mum in such a horribly insensitive way. Its never an easy thing to hear but that must have been just awful for you.
I hope that things will be handled much better for your mum (and you) from here on. You will find that Dianne and Jeni on here will give you amazing help and support as will all the other people who are on this site in such sad circumstances.
I am in a similar position to you, my mum was diagnosed in December after being ill for a long time and being "fobbed off" by her GP. She has just started chemo after having been told her fitness level is not high enough for surgery.
Still in shock really and just facing it a day at a time as I am sure you are.
People on here are amazing and emotionally speaking extremely generous so I am sure you will find here a comforting place to be, take care,
Sara x

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Feeling Alone

Postby cestrian » Wed Feb 26, 2014 7:46 pm

Hi Mogs

Welcome to the forum that never stops giving. I am so sorry to hear of your Mum's diagnosis and the insensitive way in which she was informed. Sadly lack of awareness in the GP fraternity is a major factor in our poor treatment of PC which is all too often inoperable by the time conclusive tests are introduced into the equation.

I am glad that I was the first to be told of my diagnosis as I was able to break the news to the rest of my family in my own way. It will be difficult for you to decide what to tell your Mum and when without causing her more distress but what an awful burden for you to bear. Use all the resources you are able to find to spread the load and make sure you have plenty of "me time" - you will need it. MacMillan are great for pain relief and practical help with benefits and equipment when needed and Jeni and Dianne on here are both superb with an unbeatable fund of knowledge to share.

Love and Peace

Mike

Fifi

Re: Feeling Alone

Postby Fifi » Wed Feb 26, 2014 7:47 pm

Hi,

Sorry you are posting here also. My dad has been recently diagnosed, his is advanced and has spread to his liver, and is also inoperable.

He doesn't know the survival rates either, and I'm thankful he doesn't know anything about the internet for that reason. Apart from the apparent weight loss, he looks and occasionally feels 'normal'.

What I will advise you, from the few week I have had to deal with this, is ask questions. Ask, ask, and ask. Follow everything up. Chase people. Be your mums army.

My dad was diagnosed on the 11th of this month. I am a very shy person, and I do not question anything normally. I like to be int he background, normally.

I have spoke to everyone. No one was rushing anything. Everything was 'tomorrow', or in the 'next few days'. All the time, my dad is so upset, and keeps saying he has this thing growing inside him. I couldn't stand it any longer.

I have spoken to literally everyone. Chasing appointment, getting things moving, asking questions. I have spoke to one of lovely nurses here, Jeni, she has even spoken to my dad. She has privately emailed me and given me advice on what SHOULD be happening. Nothing of which was. I am writing lists, and I have a notebook with me all times.

Basically, don't wait for the tests and appointment to come to you, please, chase everything up.

We are both new to this, and I am available anytime for advice, or just for a chat, should you need it. You are not alone.

Leila xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Feeling Alone

Postby nikkis » Wed Feb 26, 2014 8:03 pm

Hi there,
Welcome to the forum, well done for posting, but so sorry to hear your mum has had this diagnosis. My advice would be to ask for a referral to your local Macmillan or hospice nurse at some point, as they are the experts about pain, and will be able to offer lots of support and advice to you both. Your mum's GPs should know who covers her area or you can ring the Macmillan help line.
Hope it all goes well tomorrow,
nikki

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Feeling Alone

Postby jay » Wed Feb 26, 2014 8:19 pm

Hi Mogs and welcome to the forum.
Hope everything goes well tomorrow.
Jayne x

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Feeling Alone

Postby EmmaR » Wed Feb 26, 2014 9:53 pm

Hi Mogs ,
Don't feel alone because you are not by coming on this forum you have joined a wonderful family who will listen to you , advise you , with heartfelt passion hard to find anywhere else stay strong and let us know how you and you mum are doing .
EmmaR x

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

Re: Feeling Alone

Postby Cathy » Wed Feb 26, 2014 10:32 pm

Hi Mogs

Along with everyone else, welcome to the forum and so sorry for the reason why you have needed to do so.

You are at the start of what might be a steep learning curve but all of us on here have travelled, or are travelling the same path so don't feel alone and post here when you need to.

As Leila says, I took a notebook with us to every appointment (it was my partner Jonathan who had PC) and also kept a diary after treatment started.

Keep posting. Hopefully, if your Mum is well, she will be able to have some treatment that will help with symptom control and maybe reduce the tumours.

Fingers crossed for your appointment

Cathy xxx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Feeling Alone

Postby sandraW » Wed Feb 26, 2014 10:42 pm

Hi Mogs,

Welcome to the forum, so sorry to hear about your Mum's diagnosis, its my husband that has PC. It is scary, and what a horrible way to find out. Lets hope when you see the consultant tomorrow you will have better news or at least get some treatment options, take care sandrax

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Thu Feb 27, 2014 8:32 am

Thank you all so much for your kind words and support. They have really touched me. I will certainly take a notebook this afternoon as i think it's going to be so much to take in. Will let you know how it goes. It's strange because its a meeting I really don't want to go to but on the other hand at least we should know more about what we are facing. Love cara x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Feeling Alone

Postby Slewis7313 » Thu Feb 27, 2014 8:53 am

Good luck this afternoon Mogs. The notebook is a good idea and we (myself, Wife and Daughters) all agreed it is better to know what you are dealing with to understand how best to attack it.

Keep us posted

Steve
X

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: Feeling Alone

Postby PCUK Nurse Jeni » Thu Feb 27, 2014 10:21 am

Hi Cara,

Welcome to the forums as others have welcomed you in true "forum family" fashion. But as ever, sad that there is another person joining the forum.
Just to echo that I hope the appointment goes well today - have plenty of questions to ask, and ensure that you understand what is being said.
Another tip just to ensure things run smoothly, make sure that you are given another follow up appointment before you leave the hospital, so that you are in the pipeline for future discussion, and not just waiting for one again.
You will get great support from everyone on here - they are a wonderful source of support as you can already see. Anything medical, you can always email us at support@pancreaticcancer.org.uk

Kind regards,

Jeni, Support Team.

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Thu Feb 27, 2014 10:49 am

Thanks Jeni. I will make sure that we book another appointment this afternoon. Its been a tough week as we're only a small family - myself, mum and dad so I've been trying to do the running around and telephone calls whilst trying to hide it from my two boys for the moment (until we know exactly what we're dealing with). Will keep you posted on how this afternoon goes
Cara x

Fifi

Re: Feeling Alone

Postby Fifi » Thu Feb 27, 2014 5:49 pm

How did you get on this afternoon Cara?

Leila x