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

Re: Mum - Just Diagnosed

Postby marie souter » Fri Dec 06, 2013 1:05 pm

Oh Ruth,

I really feel for you, your mom sounds like shes doing exactly what my mom did, she wouldnt go back to see her oncologist she refused chemo and just decided what would be would be, however she did outdo everyones ideas with regards to outliving expectations and from disgnosis she went on a further 8mths and not all of it bad either she had several bad episodes where she went on a syringe driver and it took them a week to get the right balance in pain/sickness medication then a further week to keep things steady then shed come back off the driver and would be back to life as normal.
I'm not saying this was easy, finding the right painkiller is key...with my mom there were only certain levels of morphine she could take before she had absorption issues which caused confusion/lack of appeitite/hallucinations to the point of not being able to sit up by herself or hold a cup ... BUT this is where YOU can change things .. there are so many other drugs out there..it does take a bit of tweaking but my mom went from that to being perfectly normal the following week with a new drug change ... she ended up on Fentanyl patches which were great ... fentanyl and oxycodone are much cleaner drugs with less side effects .. the thing is if the patches aren't controlling her pain and she is worried about her cognitive function 'please please' reiterate what I have said .. this by no means is the end of it ... but at the very least she should be pain free and that is what the macmillan team will be aiming to do for her but it will take some trial and error as they can't just hit that magic drug amount straight away, your mom has to be willing to try different strengths and different drugs, the difference to her quality of life in the long run will be so much better if she is willing to try new things ... I can honestly say in the 8 mths I had my mom from diagnosis she actually had more good times than bad .. if you read my thread 'tired' you will see it wasn't easy by any means BUT to see her one week not able to hold a conversation then me stamp my feet to shake things up again, then the following week have mom pain free and out shopping as normal AMAZING ... I understand what your mom is doing, she sounds like a strong lady but she should not have to be feeling the pain she is feeling bless her .. I feel for you too as prognosis of course without chemo .... well ... your mom may not have asked that question and may not want to know ... you will find that the internet can be a good and a bad thing ... sites like these are the good .. looking for PC prognosis statistics ... well they arent that helpful .. your mom isnt a statistic .. everyone EVERYONE is different .. the best advice I can give is .. take each day as it comes ... tomorrow is going to take care of itself regardless .. don;t count the days .... rather .. make the days count ... please contact the moderator should you want any further advice on what 'may' come via my email address to speak offline ... this uncertainty and feeling of sickness you have I remember it so well ... the guys on here helped me so much coming to terms with a lot of what I was dealing with .. its a good place to vent please feel free to do so anytime ... my heart goes out to you and your family Ruth..

Love and Hugz
Marie
xx

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: Mum - Just Diagnosed

Postby PCUK Nurse Dianne » Fri Dec 06, 2013 3:16 pm

Hi Ruth,

I just wanted to touch base with you, it sounds like you are having a bit of a struggle at present. I would be happy to discuss some of these issues with you, so may email you independently of the forum if that is ok.

For general knowledge, people can ask to have another opinion if they feel that they are not being given treatment, ie Ruth has mentioned that her mother has been told that the chemotherapy may be too strong for her. There are many different chemotherapy options and they also have beneficial effects in helping to control pain, so it is always worth discussing.

If anyone does have any queries please feel free to call the support line and Jeni and I would always be happy to talk through this with you.

Dianne
Support Team

princesspentium
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum - Just Diagnosed

Postby princesspentium » Fri Dec 06, 2013 4:33 pm

Thank you Marie for your in depth advice I really appreciate it.

Just spoken to my stepdad re mum's oncology appointment this morning.

No major concerns atm. The cancer is seated at the tail end of the pancreas which apparently is good as it's an area which usually causes the least problems. They can't operate as it's close to major blood vessels :-(

Mum is going to continue with the morphine patches (she's on the lowest dose at the moment) these can be increased if needs be. She's seeing the palliative care nurse again next week. She's got another appointment with the oncologist at the end of February in 12 weeks time but obviously can go back if there are problems before then. So it's a case of wait and see atm. They may do palliative radiotherapy at some point in the future but no one really knows how it's going to develop.

Thanks for advice re different pain management drugs.

I have recommended to my stepdad that he joins the forum and also sends for some of the information booklets.

Talk about never rains but it pours - just heard that my 92 year old FIL has been taken into hospital this afternoon! In laws live 10 minutes away and my BIL got taken into hospital when he wouldn't get up this morning! this is not a pc problem - lots of ill health mainly age related I'm afraid and having spent too many years talking those dreadful statins which have wasted his muscles.

Ruth

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

Re: Mum - Just Diagnosed

Postby Cathy » Fri Dec 06, 2013 5:15 pm

Hi there Ruth

That's good that you seem to have a plan. It does help put your mind at rest a little. Sorry to hear your Mum has been struggling a bit. My own partner has also been struggling with pain that his palliative care team are trying to get on top of. At the moment he is on Oxycotin but they are looking at other ways as well (coincidentlly morphine patches was one of them).

Marie - thank you for such a detailed email about pain control.

He is also back on chemotherapy (just had his 2nd cycle) - it hasn't yet improved the pain noticibly but does seem to have helped a little with him going to the loo. Also, coincidentally his tumour was also in the body and tail and you are right that this can cause fewer symptoms - hopefully no jaundice for a start!

Hope the rest of your family recover quickly -you're right that these things always seem to happen together!

Take care

Cathy xx

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

Re: Mum - Just Diagnosed

Postby marie souter » Sat Dec 07, 2013 6:31 pm

Hi Cathy n Ruth,

This happened to me so many older family members being ill at the same time...and I don;t know if anyone else agrees but for me it always seems to be this time of the year.

Dianne gives very sage advice on Chemo, emailing the moderators with very real worrys and concerns is a must (and I am sure, cos I know she did for me, that Dianne has probably already emailed you :D)

I get so mad sometimes thinking of my own mom refusing chemo, especially when you read on here stories of people who have actually had tumors shrunk. There are a lot of different options out there with regards to chemo but my mom wouldnt even let me pursue that avenue for her.

BTW mom was great on Morphine for quite a while before she had any absorption problems, but by no means are the nurses happy with people who are having severe problems with it and are always and very much so NEED family input as no-one knows your mom better than you and your step dad .. the district nurses and out of hrs team always used to take any advice or concerns I had as real and always respected my opinion and infact 99% of the time they acted on it.

I always had a pact with my mom as I was her sole carer...you can lie to everyone else (and she did regularly) but you can't to me because that could cost you your life, and we kept to that promisen I truly hope you take Diannes advice and advise your mom not to give up on chemo/radiotherapy etc sometimes you just have to push and prod a little ...

good luck all
hugz n love
Marie xx (wheezing with bad asthma AND I gave up smoking weeks ago how does that work?)
week 2 .. cold turkey am finding it easy and very proud of myself

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

Re: Mum - Just Diagnosed

Postby Cathy » Sat Dec 07, 2013 7:30 pm

Hi Marie

I agree re Christmas.. I lost my sister nearly 5 years ago on NY Eve and last Christmas Jonathan was diagnosed and this, here we are struggling again. I feel resigned to it really. As Julia (J_T) on here once wrote "it's the bank holiday so things are bound to go tits up". That really made me smile...

Well done on stopping smoking.. Just from my own personal experience, I've given up twice (last time 14 yrs ago for good - still a non smoker), both times I got full of cold about a week or so after. I was told it was the toxins coming out.. Not sure if that is true or not but stopping can only ultimately be a very good thing. Will stop now before I get boring :)

Cathy (trying not to be boring) xxxx

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

Re: Mum - Just Diagnosed

Postby marie souter » Sun Dec 08, 2013 4:03 pm

Lol Cathy, no one could call you boring xx
OOh maybe you're right, maybe that's why my asthmas playing up...feel a little better today.
This is the third time I have quit .. first time for almost 4 years then I got dads terminal diagnosis of COPD (caused by hospital negligence)...the day he died I started smoking again. I quit again July 2012 when I got pneumonia x 3 relapses and an ICU stay. When mom got given the news she was terminally ill I was with her, went outside and started smoking again. Stupid when someone you love has just been told they are dying because of smoking BUT stress makes you do stupid things.
I promised mom I would quit as soon as her funeral was over...and I did. I'm finding it easier than any other time. I will never smoke again, I never want to put my children through what I had to see. I can't change what I did with smoking in the past but I will effect my future as best I can from now on.

Julia is totally right BTW everytime mom had a bad episode it was either on a weekend (Noooooooooo) or a bank holiday....no macmillan nurses .. having GAT DOCS to deal with...urgh .... I had a lovely consultant who came out to see mom and he wrote a letter for the GAT DOCS at the front of the nurses folder with his number on for weekend advice....saved us no end of hassle ....

SEE CATHY ... who's boring now eh hehehe

hugz n kisses
Marie

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

Re: Mum - Just Diagnosed

Postby Cathy » Sun Dec 08, 2013 6:12 pm

LOL Marie

What a super consultant (don't get me started on trying to get home visits - I WILL be boring).

When I stopped smoking the last time I went out with a friend a couple of days later and told him... He is a very dour born cynic (but also lovely)... Anyhow, he said to me that he didn't believe I'd stopped and ended up betting me £100 I wouldn't stop for 10 years. I was outraged!! So outraged I thought "Right! I'll show you, you b*****!" And I did. Exactly 10 years later (which just happened to be NY Eve) he was with me and a group of other friends at a little party and I asked everyone to gather round and made a speach about stopping ending with telling him he owed me £100. Fair play to him he paid up (tho he didn't pay interest which I also demanded :)). So, my advice to anyone trying to stop was always "Get someone to REALLY wind you up". I missed a trick.. I should have patented the idea and be rich like Alan Carr was!

Well done tho, it sounds like you have it cracked.

Cathy xx

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

Re: Mum - Just Diagnosed

Postby marie souter » Mon Dec 09, 2013 5:46 pm

AMG CATHY......NO INFLATION?????? What about inflation?
And, why didn't I think of that....'looks around for a rich friend'.....'all poor'.....
YOUTUBE?????? Hmmmmmm ......OOOOOOh sponsors?
Now sponsorship would be good tho?
Shoulda went down that route DAMMIT!!!!
Too many people winding me up full stop for anyone to cause that kinda outrageous indignation that would make me to go 'y u lil, I'll show u!'
Bah still quite tho...


HUgz n Love u Nutta hehe
Marie
xx

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

Re: Mum - Just Diagnosed

Postby marie souter » Mon Dec 09, 2013 5:49 pm

Hey Ruth,

How's things going with you and your mom?
And your FIL?
Been a coupla days, was just wondering how you are all doing.

Hugz n love
Marie
xx

princesspentium
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum - Just Diagnosed

Postby princesspentium » Mon Dec 09, 2013 11:11 pm

Hi all.

Mum remains the same sounding remarkably cheerful at the moment.

FIL is still in hospital, but now on main ward. He has a brain infection which is affecting his speech and motor control. They have him on a glucose drip and are trying antibiotics to treat the infection. If that isn't successful they are talking about the possibility if a lumbar puncture!

Who knows what's going to happen? I suspect a nursing home nay be the next move as MIL is 87 and not in a position to care for him.

So we're just soldiering on day to day.

Ruth

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

Re: Mum - Just Diagnosed

Postby marie souter » Mon Dec 09, 2013 11:39 pm

Hi Ruth,

So pleased your mom is soldiering on, from what you told us all originally though she sounds like a fighter and although she also sounding accepting of whats happening the fact that shes soldiering on shows how strong she is ....
What an awful thing to happen to your father in law I do hope the treatment works and he can avoid the nursing home...
A terrible time that you and your husband are having .... both sides with massive causes for concern ... when I was little I always thought my parents would be there forever ... to be able to have mine to the age of your mom and your father in law I would have been so happy .. my poor dad lost his fight to a terminal illness when he was 63 and my mom to pancreatic cancer at 65 .... all my family passes away young ... so am nagging my kids now about smoking and keeping fit and eating healthily ... all the stuff I didn't do ....
I truly wish your family all the best Ruth please keep us informed of how everythings going for you xx

Love and hugz
Marie
xx

princesspentium
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum - Just Diagnosed

Postby princesspentium » Thu Dec 26, 2013 5:30 pm

Just wanted to bring you up to date with Mum's situation.

Mum saw her GP last week as he had called to ask if she wanted to see him to talk about anything related to her diagnosis. She wasn't going to go at first but then decided there were a few things she needed to sort out.
She has been having problems with keeping her morphine patches to stay on for 3 days so now the gp has changed them for something better. She has also told him that she doesn't want to go into hospital when the time comes - but that's for the future & remains to be seen, depending on how her condition develops.

She also saw the palliative care nurse again, who helped mum fill in the forms for claiming Assistance Allowance. As they are 20 miles from Norwich it's costing a lot in petrol to do a 40 mile round trip every time they have to go.

Mum saw the nutritionist last week and she has been given a food list & told to eat more fat! She is still losing weight and has little interest in food or much of an appetite.This so sad as she has always loved food, eating in good restaurants and cooking, all her life.She's also been given some high nutrition drinks in different flavours to take regularly. The nutrionist has said to try to sip some every so often even if she can't manage to drink a whole drink at one go.

From wanting to clear out the house and 'sort' all the clutter she now says it's all too much for her and she just hasn't got the energy to tackle it!

Mum has found this Christmas difficult - she hasn't known what to write in Christmas cards or in the annual letters that accompany many of the cards she sends. Even telling people she knows in the village has been uncomfortable - how do you just drop into the conversation 'By the way I've been diagnosed with inoperable pancreatic cancer and given a year to live'!

My brother and his partner are going to stay for a few days from tomorrow which will ch eer her up. We came away to Derbyshire for the week as planned and have had a quiet week.

We have no plans for New Year's Eve as neither of us are looking forward to this year.
My FIL is still in hospital, he's been there for 3 weeks now. He had a full body scan last week but they couldn't see anything untoward, his main organs are all fine. However his speech and gross motor control are still being affected by the brain infection which has only partially responded to antibiotics.

Not a lot more to say - I'm surviving by pushing the thoughts about mum and what the future holds, to the back of my mind. But every so often it hits me and I get very down and weepy. My husband is also feeling down about his dad's situation given that his mum at 87 won't be able to look after dad when he finally comes out of hospital.

Ruth

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

Re: Mum - Just Diagnosed

Postby marie souter » Fri Dec 27, 2013 2:26 pm

Dear Ruth,

What a terrible time you and your husband are having, you must be out of your minds with worry.
Is assistance allowance the same as DLA? Did the nurse fill this is under the special rules? It puts your mom on top rate of care and mobility and works out at quite a substantial amount of money I think moms was over £200 a week...We got a doctors letter and posted it in, this advises that your mom is terminally ill and negates the need for any further info being requited from docs/hospital.
There is nothing I can say that will make things any better other than you will find the strength to deal with all thats in front of you, I don;t know where it comes from but you do find it, the horrible thing about this damned disease is how abslutely exhausted your mom is going to feel and all her get up and go and got up and gone..
I'm sure tho with your brother and his partner going that should go a long way in giving your mom some good company something else to focus on.

mY thoughts are with you
love and hugz
marie
xx

princesspentium
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum - Just Diagnosed

Postby princesspentium » Tue Dec 31, 2013 3:23 pm

Well things are much the same with mum, I talked to her last Sunday & she's still experiencing some pain although the new patches seem to be helping.

We actually got on to the subject of funerals and she said she definitely didn't want a Christian service but would prefer a Humanist. She's also like a 'green' burial she thinks although she admitted when she was younger she was always worried about being buried alive and the same with a cremation, being burnt alive! Things feel like they are in limbo at the moment - it seems you never know with this disease whether things will change quickly or slowly.

My 93 year old FIL is being discharged after a month in hospital. They are arranging to deliver a hospital bed & hoist this week and a team of 2 carers, 4 times a day to help my 88 year old MIL look after him. My husband is very depressed about the whole situation about his dad and my mum and neither of us had a 'good' Christmas. We don't feel we have anything to celebrate tonight as we know the New Year will be a tough one for us both.
Will probably have an early night - we never really celebrate at NY Eve - I've given up alcohol too since last Sunday - am doing a Dryathlon to raise money for cancer research - no alcohol for January!

Just wanted to say many thanks for your kind words and advice since Mum was diagnosed and I expect I will be on here much more next year as things change.

May the New Year bring you everything you hope for.

Ruth