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

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mrsdaniels
Posts: 3
Joined: Thu Jun 13, 2013 7:45 pm

Newly Diagnosed

Postby mrsdaniels » Fri Jun 14, 2013 11:43 pm

Hi
just looking for help and advise as my mum has just been diagnosed with pancreatic cancer.
the drs have given us a time scale of up to a year but i know from friends whos parents have had this that they have gone much quicker. I can deal with this fact as long as i know what s going to happen is this a normal timescale or should i be prepared for much less time
Mum has had a stent put in this week as had been very yellow but is still very much off her food and has no appetite
how will i know when its the beginning of the end :(

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

Re: Newly Diagnosed

Postby louiepc » Sat Jun 15, 2013 12:09 am

Hi,

Firstly I am sorry to hear of your sad news. I lost my mum nearly 18 months ago.

Looking back, I was the same, wanting to know when the end is coming. As hard as this will sound, try to stay in the here and now. Yes you need to do everything you can to help your mum, make your mum feel comfortable and pain free, but believe me, you are at the start of a long journey, a complete change of how you look at life, what used to be normal is no more. It's just a different form or normal, your normal. This is a shitty, sneaky disease that can creep up very quickly or it can stay fairly silent for months if not years. Everyone is different, some are luckily very fortunate and have had the disease nearly 3 years, sadly some are not so fortunate, and have had limited time from diagnosis until the end.

You say your mum has had a stent fitted, that's great, hopefully her jaundice will drain away and she will start to feel a bit better again. Relish the moments that she is well, you will look upon these moments as memory bank moments, something as simple as going out for a trip or even sitting doing my mum's nails, very simple everyday activities, are my memories of mum.

The tough times, whenever they may come, will come at some point, don't think about those times too much, this time now is so precious.

Best of luck, I hope that your mum starts to feel better soon, is she going to be seeing an oncologist?

love louie xx

mrsdaniels
Posts: 3
Joined: Thu Jun 13, 2013 7:45 pm

Re: Newly Diagnosed

Postby mrsdaniels » Sat Jun 15, 2013 12:15 am

hi louie
we are still waiting for the appointment as she is still in hospital as she is a diabetic they having trouble with her sugar levels but with no appitite struggling a bit with this there was also talk of a little chemo to help but not prolong
like you say i guess its a long waiting game and you learn to treasure time spent with loved ones

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

Re: Newly Diagnosed

Postby louiepc » Sat Jun 15, 2013 12:27 am

Hi,

When my mum had her stent fitted, it took a few days, if not a week for her to get her appetite back, all the toxins need to drain from her body and she will feel pretty lousy for a few days, until the jaundice has all gone. I don't know a great deal about the diabetes side, as mum didn't suffer with that.


A mum at my school has been diagnosed with pc, it is so sad she's mid thirties, and has little lad of 3, and sadly it looks like she's near end stage. So very sad. :(
Last edited by louiepc on Sat Jun 15, 2013 8:27 am, edited 1 time in total.

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Newly Diagnosed

Postby Bee » Sat Jun 15, 2013 7:32 am

Hi,
I am so sorry to hear of your mums diagnosis, it is an awful time for all of you and it takes a while for the news to sink in. My husband is also fighting this disease and in the days after diagnosis the world was a blur, with so much emotion and so many questions in my head!!
As Louie has said your world really will now take on a new normal, our lives are lived for here and now. We decided we had to try and maintain our normal lives as much as possible, mainly because we have two children, it has been hard but does help. For me I only think as far ahead as each stage of treatment and go no further than that. We have planned special days out and made some fantastic memories since diagnosis and mostly we just try to appreciate one another and the little things in life. I know that sounds so cliched but its true.
As hard as it is try not to spend precious time worrying about what is to come, treasure the present and look after yourself as well as your mum,
Take care,
Bee x

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

Re: Newly Diagnosed

Postby Slewis7313 » Sat Jun 15, 2013 10:42 am

Hi, Bee and Louie seem to have covered the main issues that present themselves when you are faced with this awful illness. I was diagnosed with inoperable PC in December last year and was initially given 6 - 12 months. It was so difficult not to focus on the bad aspects of Pancreatic Cancer, but here I am after 6 months doing really well and responding to treatment. All are not as fortunate as me, but it does show that the initial diagnosis is just a starting point of a journey which does not have a clear road map. We are living for the here and now, aware that the future may not be rosy, but will cross the difficult bridges when we gwt to them. I hope your Mum has some relief from the stent which I understand (I don't have one) has relatively quick effect on the jaundice.

Good luck to you both!

Steve

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Newly Diagnosed

Postby KATB » Sat Jun 15, 2013 11:49 am

Hi,

So sorry to hear about your mum - it's a tough thing to come to terms with but we also deal with it by just taking each day as it comes and not thinking too far into the future.

My dad had jaundice and felt absolutely terrible and it was hard to believe back then that he would get any better. However, the stent does work quick quickly, the jaundice subsides and my dad has been much better ever since. He's now on chemotherapy and doing really well.

So don't lose heart - one step at a time and first it's the stent and getting the jaundice sorted, then you can go from there.

You will find this board really helpful - you can ask questions and get loads of great advice but we are all here for anything you need, even if it's just to talk and get your feelings out there.

Don't hesitate to contact the nurses on here for any questions about the disease and treatments etc. - they are FABULOUS.

K
x

mrsdaniels
Posts: 3
Joined: Thu Jun 13, 2013 7:45 pm

Re: Newly Diagnosed

Postby mrsdaniels » Sat Jun 15, 2013 11:12 pm

thanks everyone for your words of support like you all say everyone is different and people respond to treatments differently she is certainly much better colour after having the stent put in.

PCUK Nurse Dianne
Posts: 285
Joined: Tue Aug 14, 2012 3:29 pm

Re: Newly Diagnosed

Postby PCUK Nurse Dianne » Tue Jun 18, 2013 2:26 pm

Hi mrsdaniels,

I am pleased that you have joined the forum, Welcome. I am sure you will find this a very helpful and supportive environment, and already you have had some great responses. I would like to email you directly off the forum with some questions that may help us to be able to direct you and give you more information that may be helpful.

thank you to all the other 'forum family' for the great support.

Dianne
Support Team

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Newly Diagnosed

Postby marie souter » Thu Jun 20, 2013 12:55 am

Hi Mrs Daniels,

Firstly let me send my love out there as this is truly an awful time, I have found since coping with my mom who was diagnosed in April this year that thinking about timescales is a soul destroying route to go ... as you seem to be on 'hold' waiting for the inevitable to happen, my advice is 'one day at a time' as each day will bring its new troubles and worries or absolute joys, you will start to get a feel for things and how they should go, ie: which pain relief suits better, my mom is currently on a syringe driver to deliver morphine and anti sickness drugs until her 'correct' dosage is found, you will know what works and what doesnt, the docs, nurses need this feedback, I find it helps to write down and keep a record of when I give pain relief, bowel movements as morphine can make you very constipated so if u can keep a record of this then blockages can be avoided or pre-empted and correct laxatives given, moms on a mix of ducosate and senna and its still a struggle ... My mom too had the stent fitted and after a couple of weeks she was so much better and that awful awful itch went as well ... if ur mom isnt already on creon tablets i would suggest asap to ensure the food she is eating is actually being digested properly... You WILL know when its the beginning of the end as you know your mom better than most ... she will stop drinking eating going to the toilet, and will probably end up on the sedation route to keep her comfortable ....having said that though I know its not the same for all my sister has thought many times that my mom has been on that route but as I know her best I can say she isnt ... but I truly know I will know when that time comes, as your mom suffers more pain the district nurses and macmillan team are amazing, do you have them coming in yet? My mom is also having trouble with her blood sugars and they still arent under control yet and its been weeks, has your mom been showing any symptoms of this? Vaginal infections, blurred vision? thirst? hunger? wanting to pass water frequently? extreme fatigue? is she has these then its time for someone to pull their finger out ... remember that the pancreas will now kind of backfire and this will cause havoc with the blood sugars intermittantly jsut something to keep an eye on unless it gets out of hand.
x

welshgirl
Posts: 32
Joined: Fri Jun 21, 2013 11:48 pm

Re: Newly Diagnosed

Postby welshgirl » Tue Jul 02, 2013 4:14 pm

Hi

My mum who's 75 on Tuesday was diagnosed back in October of last year, had been really well up until then but suffered upper abdominal pain and had the diagnosis after a ct scan. My mother too had a stent inserted just before Christmas and impoved gradually after this. My mother is on Chemo every week for three weeks then has a week off, she is doing extremely well and is stable at present. She's eating well and keeping her weight up.

Dont think about the future too much, I dont, I take each day as it comes, appreciate each moment with your mum, I certainly do. Life for me has changed a great deal, trivial things dont matter any more, my mother does!!!

Keep positive, unfortunately I'm in exactly the same boat!

Nia