General Advice / Support

[Susie87]

Dear all,

My Mum was diagnosed with PC about 2 months back, and was given a 3-6 month timeframe.

I'm finding it very difficult to find any information on what happens with PC as time goes on. Having already lost my father to bone cancel 4 years ago, I found a lot of information regarding loss of strength and eventually like to catch pneumonia or similar. I can't seem to find even a rough indication on how quickly things will change, what the symptoms will be etc?

My Mum lives fairly locally (30 minute drive) but is fiercely independent and does not want to know what is wrong with her - for example, she is due to have operation tomorrow to remove gall stones and refused to ask GP what type of stones were being removed. I only found out by casting my eyes over the hospital letter when she wasn't looking to see she is booked in for ERCP (?) procedure.

I'm also finding she is becoming very confused / muddled up and feel concerned she may be mixing up her medication. She is particularly keen on taking liquid morphine which GP has prescribed as emergency pain relief only. Does anyone have any ideas if this is likely?

Any feedback would be greatly appreciated. I like to ask questions and know what is happening but don't feel I can press the isse with my Mum for her privacy reasons.

I think things are going to start to get bad within the next 4-8 weeks but need to know what to expect.

Early replies would be greatly appreciated - it is nice to know I'm not alone!

[laura]

hi susie, an ercp is where they put an endescope down, to look at bile and pancreatic duct. can ALSO be used to remove gallstones, also stents can be put in via this [ i believe] . everyone with pc is and /reacts/accepts/or in denial at differant speeds, very hard to give definative answers to lots of the questions we all have, would your mum let you talk to the doctors without her, am sure she feels scared, apprehensive, its an awful feeling to not be in control?

oromorph is very good for breakthrough pain, what pain management is she taking?

could her daily meds be put up into blister packs from chemist?

mention these concerns to her dr?

so important to get meds correct

is she being offered chemo, rt, or an op ? or is it just pallative care? does seem a bit vague doesnt it

sorry cant be any more specific, but if she really has got pc i would have thought she would have been allocated a specialist nurse at the hospital, or can you get hold of macmillan if a nurse visits you at home they can be so very helpful,

please write back if can be of further help, you will find lots on here, love laurax

[Susie87]

Hi Laura,

Mum's now had the ERCP to remove the gall stones which were causing jaundice - She has had a small stent put in for the meantime and will be back in for blood tests again next week.

This is to make sure everything is fine with her liver blood count prior to starting chemo.

She is taking Oromorph along with morphine in tablet form. She is also on appetite enhancment tablets, has just completed a course of steroids and is on a mix of anti-depressants and sedatives.

I'm planning to try to speak with her Macmillan nurse this week to try to get some information regarding what stage she is at and to discuss her confused state so hopefully this will get me some answers!

I'm just finding it so frustrating not knowing what happens when her health starts to deteriorate. You hear lots of stories for people with lung or other cancers but I can't seem to find any information on pancreatic. Even knowing how fast, the symptoms etc would be something but maybe these are things for me to ask Macmillan I guess.

The forums on here are hugely helpful to gain an understanding from what other people are going through.

As ever, all thoughts are appreciated

Susie x

[laura]

hi susie, glad the ercp went ahead, and all seems gd, susie i dont think youre going to get all the answers you are seeking, everyone is so differant in the way they respond/ react to treatment, guess a dr would be reluctant to give definative answers to anyone.

my hubby was diagnosed feb 2010, unsuccessful whipple april 2010, chemo started june 2010

had 19 months treatmment, nothing since nov 2011, doing well, we're living with it, so you can see the problems, we were told about 6months!! not that accurate, but at the time it seemed a fair assesment based on the average.

try not to live too far ahead and miss out on the now.

love laura x

[louiepc]

Hi Susie

Firstly, I am sorry that your mum has got PC.

My mum had it and if you want to read my posts, you will probably find a fair amount of information on them, (some not pleasant reading).

I must reiterate what Laura has said, everyone is different with pc, how they react with treatment, medication etc. Please don't look too far in the future, when the time comes that mum is no longer here, it's horrendous. Live for the here and now, the future is tomorrow, it can wait.

I have known - personally - a few people who have sadly had pc, one lady passed a few months after my mum, she had literally only been diagnosed and passed in her sleep, an anurysm took her. I think rather fortunately, as with many others my mum lasted to the bitter end. It's not nice, it's scary and things can, not always, change rapidly from week to week then onto day to day.

Make the special memories that will take you through the times when your mum is not here, enjoy little moments you have together.

With regards talking to doctors etc. I took it upon myself to speak to the pallitave care team, inc doc. I went armed with information from this forum, and got answers. I did do this behind my parents back, as my dad was suffering badly with his heart at the time, and was in complete denial.

I hope now your mum has had her ERCP she feels a bit better.

love louie xxx

[Susie87]

Dear both,

Thanks for the replies. I don't think I will be the most regular of posters but your words and thoughts do help and are appreciated.

Went to see Mum today for a visit and arrived to find her in a great deal of pain. I managed to make an appointment with the out of hours GP who prescribed some specific painkillers for stomach pain. I think she had forgotten to take her medication last night so her base morphine level was missing. She is very reliant on the Oromorph and took 6 spoons in 4 hours. This is the most I've seen her take as yet, so had a bit of a reality check today I guess.

I noticed mum had a very swollen stomach today which I think could be Ascites. Has anyone else had any experience with this? Is this usually one of the later stages?

I think I was trying to convince myself that I was coping by just carrying on but not sure it's working so much anymore. My work have been fantastic, getting other team members trained to do my job if and when I'm not in.

My relationship with mum has a difficult past due to her history with alcoholism but I'm trying to forget that as it really doesn't matter anymore but it does add a complication to things for me.

Any advice re. Ascites or what may be round the corner would be appreciated. I fully understand that each person is different but generally an overview is what I'm after. I'm a bit of a control freak and need to know (roughly) What I'm up against.

I hope this post makes sense and I haven’t rambled too much

S x

[laura]

hi there susie, replying to your comment re ammount of oromorph your mums taking, when bri was having to take several spoonfuls, his morphine capsule was increased, this now controls his pain levels, and he very seldom has to take opomorph, so perhaps you could talk to , drs, macmillan nurse, or oncology ? one of them would be able to sort the correct dosage for her, my understanding is that the opomorph is usually for breakthrough pain, at the time the pain is there, not as a pain control!

cany help with your other queries, sorry.

with regard to your emotions/ earlier problems with your mum, etc. theres no "right" way for you to be with her, only what is right for you, do try not to go down the "guilt road" doesnt change or sort anything out does it,? just do what you want and feel is the thing for you, am sure your mum is most probably having similar thoughts !

anyway take care of you as well, love laura x

[louiepc]

Hi Susie

My mum had ascities. I found the doctors tend to leave you in the dark, kind of a need to know basis. You sound like me, I had to know everything.

Basically ascities is the tumour "leaking" fluid. The more fluid/or quicker the build up means that the tumour is getting bigger. A drain will be placed into your mum's tummy, not a pleasant procedure, this draining will take place over a few hours, so the body doesn't go into shock.

Your mum will need to be drained, as she will get to the point that she will be uncomfortable, similar to being pregnant. My mum also had a severe infection due to the fluid becoming infected. Any signs of high temperature over 38, flu like symptoms, get her to a&e quick. An infection can be very rapid. My mum had been fine during the day, even popped to the shops at lunch time, by 7pm dad was ringing the hospital.

Again, I remember writing about this, so if you wanted to read up on it, pretty much everything is there.

Take care hun, write when you can/want to. We're all here for you.

love louie xxx