A forum for advanced pancreatic cancer issues

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francis
Posts: 22
Joined: Wed Apr 11, 2012 9:19 pm

My world just fell apart ( My Mam) Died 3rd Dec

Postby francis » Fri Apr 13, 2012 12:49 am

My wonderful 68 year old mother had a scan on the 2nd April 2012 which showed up liver mets. She the was sent for a CT scan on the 5th April 2012 which then showed Pancreatic cancer in the tail of her pancreas 2-3cms. Because of the bank holiday her results wasn't sent to the specialist pancreatic cancer unit ([Name removed -moderator] hospital) until 10th April 20012.
We missed the MDT Meeting that day so now have to wait until 17th April. She has gone from feeling ok and only feeling a bit nauseous to only able to eat a small amount each day and having to take 2 tramadol per night which is not quite cutting it. The GP recommended that she take paracetamol as well as the tramadol. I have rang and e mailed Mr [name removed -moderator] secretary who was really nice on the phone. She told me that we would receive a letter in a couple of weeks basically. What I am worried about is that by the time treatment starts she will be ill and not able to withstand the treatment, what ever that may be?? My question is how long do I wait before I start to ring and make a nuisance of myself???

My head is in a whirl of emotions and all I want to do is cry but I can't I have to stay positive for my dad and my children and most important of all for my mam.

I am so glad I found this site. Everyone is so strong and supportive for eachother it's really quite humbling reading your posts and I thank you for sharing some of the most heart breaking moments of your lives to help others you most certainly have helped me
Last edited by francis on Mon Dec 10, 2012 2:28 pm, edited 1 time in total.

ali
Posts: 90
Joined: Sat Jun 25, 2011 9:22 am

Re: My world just fell apart

Postby ali » Fri Apr 13, 2012 9:08 am

Hi Francis
I would get back in contact with the secretary and ask for a meeting with consultant to be arranged
Every day counts at this stage,whether for possible treatment plan or for palliative care to alleviate symptoms which may change daily
You don't have have to come over as stroppy just me firm
From experience--if you don't keep asking you can be left in the dark,and sadly to say every day matters
Take care
Helen xx

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: My world just fell apart

Postby suef » Fri Apr 13, 2012 9:13 am

Dear Francis,

I am so sorry to hear your story, must be a very stressful time for you and it sounds as if you are not getting enough support with pain relief etc.

I do strongly urge you to call the Support line on this website. It is staffed by real professionals, who can give you excellent, practical advice. The number is 020 3535 7099.

Good luck - and be firm with the NHS!

SueF

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: My world just fell apart

Postby Nardobd » Fri Apr 13, 2012 12:35 pm

Hi Francis

I'm so sorry to hear your news. The answer to your question is "Don't wait at all". My cynical view is that those who shout get seen first. Like Helen said, it's no good being stroppy or abusive but you do need to be firm and assertive.

Basically, the MDT is the meeting where your Mum's case will be discussed and the route forward planned out. The options will be put forward and all of the doctors, surgeons, radiologists and other senior clinical staff will be able to confer to see what is best. So, there's not a lot of point in having a meeting with the consultant until after the MDT but there's no reason why one can't be set up the following day.

Good luck and keep us updated.

Nicki

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: My world just fell apart

Postby rachelqt » Fri Apr 13, 2012 3:05 pm

Hi Francis,
Sorry to read about your Mum. It is just an horrendous feeling when a loved one is diagnosed. As Helen and Nicki have said, dont wait and get back on the phone again, it cant do any harm to try and push a meeting forward! At least you know you have tried.
This forum is a great place to get your emotions out especially if you have to be strong infront of your loved ones..try not to hold it in to much though! I know from my own experience of trying to hold it together caused me to come out in a very irritating rash all over my whole body! Doctors said it was stress related even though I thought I was coping OK. Now I know it is good to pour it all out to a few good friends and on here too!
Once your Mums case is discussed at the MDT Meeting more of those questions going round in your head will be answered and you will hopfully get a more clear picture of her situation.
Please keep us posted on your Mum...Takecare Rachel x

NICOLA
Posts: 41
Joined: Tue Apr 10, 2012 10:09 pm

Re: My world just fell apart

Postby NICOLA » Sun Apr 15, 2012 9:07 pm

Hi Francis, Im so sorry to read about your mam, your story sounds just like mine, my mam is also 68 and was diagnosed in Feb, she was feeling ok apart from jaundice, they fitted a stent for this after that she went down hill. She is also eating very little and taking 2 tramadol every 4 hrs, sleeping lots, I too just wanted to cry and did so when I was on my own, I will never cry in front of my mam or dad as far as they are concerned its going to be ok. 2 months on now and Im constantly pestering the professionals, I phoned once to chase up a referal letter only to be told it was sitting on a desk with a pile of other letters waiting to be signed as the secretary was on holiday, they pulled out the letter and emailed it instead. I think you should always chase things when you think they are taking too long.
My mam's pc is inoperable and she is starting chemo next week hopfully this will make her feel better in the long run.
This site is lovely for support and info, please keep us posted about your mam and stay possitive
Nicolaxx

francis
Posts: 22
Joined: Wed Apr 11, 2012 9:19 pm

Re: My world just fell apart

Postby francis » Sat Apr 21, 2012 12:07 pm

Thank you all for taking the time to reply you have helped so much! I did call the support line and I am making myself heard and my mother got a call from her referring doctor. They wouldn't give me any information due to data protection.
He said that they they had their MDT meeting and are not going to treat her at Morriston hospital but passing her over to ******, (we live in ****) under Dr *******. He rang on Thursday and said said we should have a letter next week so I think I'll give them a call on Tuesday.
In the meantime my mother seems and looks ok although I don't think she is eating a great deal. She still is ok with the Tramodol 2 3 times a day.

I think I am pretending she is ok and maybe they have made a mistake, well you never know??
Ive been reading some of your posts and and find it quite difficult to imagine myself going through what you all have been through and are going through, it frightens me.

Thank you for being there XXX
Last edited by francis on Thu Apr 26, 2012 2:02 am, edited 1 time in total.

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: My world just fell apart

Postby louiepc » Sat Apr 21, 2012 11:10 pm

Hi Francis

Glad you contacted your mum's docs, and that she is being seen soon. Definately call them early next week, like everyone before has said, you need to keep on top of these docs/secretaries.

Good luck, and thinking of you.

louie xxx

francis
Posts: 22
Joined: Wed Apr 11, 2012 9:19 pm

Re: My world just fell apart

Postby francis » Sat Apr 28, 2012 10:07 pm

Today has been the first bad day. She was up practically up all night with nausea and diarrhoea. She couldn't eat all day and was actually sick green stuff as well as the Chinese she had eaten ?! She also has a dry mouth and pain in the tummy.

I'm not sure it's due to the Chinese she ate or if it was the change of anti sickness medication? She said that she felt better once she was sick.

I went to the chemist and asked their advice. They said that she should try and persevere with the medication change if possible. I explained that I was worried about how this would effect her chemo next week and they advised me to contact our oncologist (easier said than done! Should we have a first point of call for these worries ???)

IHATE THIS BLOODY CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!

Barbara2
Posts: 15
Joined: Thu Mar 29, 2012 9:18 pm

Re: My world just fell apart

Postby Barbara2 » Mon Apr 30, 2012 11:40 am

Francis,

So sorry to hear about the difficulties you have been facing. I too HATE THIS BLOODY DISEASE, no doubt along with everyone else on these forums, but I know I have found support here over the last few weeks since my husband was disgnosed. You have been given good advice, you do need to be assertive and speak up for your mum and I'm glad you feel able to do that. You might have a few more bad days ahead but hopefully they will be interspersed with good days where you can enjoy your time with your mum. I hope the chemo goes well. Sucking an ice cube can help the dry mouth if she doesn't feel like drinking but it is important to stay hydrated as I'm sure you'll know.
Please let us know how things go.

Barbara xx

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: My world just fell apart

Postby louiepc » Tue May 01, 2012 10:51 am

Hi Francis

sorry your mum has been poorly, I think it could possibly be part and parcel of this disease, my mum suffered terribly with a bad tummy, she would take immodium, and these did help, although they do tire you out.

You should definately have a point of contact from your oncologist team. You should have a specialist nurse assigned to you, and be able to call at any time, as when your mum starts chemo, you need to know that you can get in touch any time day or night.

Yep completely agree with you, since losing mum to this hideous disease I can safely say I hate this cancer with a vengence. My anger is solely on the cancer and how nasty it is.


Take care


louie xxx

NICOLA
Posts: 41
Joined: Tue Apr 10, 2012 10:09 pm

Re: My world just fell apart

Postby NICOLA » Sat May 05, 2012 8:09 am

Hi Francis

I Francis how are you ? Its awful to see your mum in so much pain isnt it ? Whenever my mam has a bad day I feel like getting onto the phone to the professionals and asking for help and I do, most of thetime they have helped.
My mam has just started her chemo, a nurse comes out to do it at home which my mam is pleased about, the first one wasnt to good but she's just had her 3rd and Im seeing a small difference already, she's got no pain at all now and hopfully as time goes on she'll be able to start eating.
Keep your hopes up and hope all goes well with your mum's chemo.
Nicola

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: My world just fell apart

Postby rachelqt » Sat May 05, 2012 11:02 pm

Hi Francis,
Hope your mum is doing better from your last post. I hope her treatment goes well for her. We seen a great improvement with my dad once he got started. You should have a point of contact once your mum starts treatment and given a list of numbers to contact day or night.
Takecare Rachel x

francis
Posts: 22
Joined: Wed Apr 11, 2012 9:19 pm

Re: My world just fell apart

Postby francis » Thu May 10, 2012 10:14 am

I thought I would update on how things are going but first of all I would like to thank you all for your replies they have been a great support to me. Even though I don't often post I spend a lot of time on here reading your stories and trying to compare. Nicola my mothers name is also Eileen.
Well here's the update. She went in to a hospice last friday after being sick all week. She was put on an IV and given a syringe driver for sickness and pain (the sickness is the what is the worst!!). She was getting tired but coped well. She wasn't sick monday and then went for a liver biopsy on Tuesday this was an ordeal, everything that could go wrong did, but thats another story! After the liver biopsy the surgeon said that there were a few spots on her liver but they were very small. She wasn't sick that day but didn't eat till 5pm! And was very tired and so was I so how she must of been feeling must have been awful!!
She was then sick last night and feeling very tired this morning.
Ive asked about Creon and have been told that being as her stools are not loose or tary it wouldn't be suitable. Ive also asked about a stent being fitted and was told that they warn't sure where the blockage was or if there was more than one. They also said that stents bring about other problems and the point of the liver biopsy was to determine what chemo to give as chemo was the prefered treatment to shrink the cancer and that would put less pressure on the tubes that are blocked.
Oh and the nurses at the hospice told me that they wern't sure if the pancreatic cancer was the primary cancer??? Doctors haven't said a word??!! Im baffled!
We now have to wait 1 - 2 weeks for the results of liver biopsy to start chemo... I'm going to give the oncologist ring now!
Once again thank you all and I really hope that I can help with my waffle. X

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: My world just fell apart

Postby PCUK Nurse Jeni » Tue May 15, 2012 4:58 pm

Hi Francis,

Unfortunately, tarry stools are not a symptom of pancreatic cancer. Pale, oily (or greasy) stools are the norm, and they are also very offensive. They are often difficult to flush. It might be that your mum doesn't have these either, which is good!

But, tarry stools is not an indicator of whether to give creon or not.

Kind regards,

Jeni.