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Barb (Canada)

Rosieh - Parents

Postby Barb (Canada) » Sat Apr 21, 2007 7:14 am

Hi Rosieh ...I hope you have a good weekend this week (assuming you are in Widnes), and that you are able to get him outside a bit. Weather was great here the last two days.

This disease creates such a roller coaster ride for caregivers. Yesterday was another good day for my Mom. Her medication was doubled the day before which meant less dosages throughout the day (which I think helps the patient if only pyschologically), and less bouts of pain. She dressed up in her new outfit and we went out for three hours visiting her sisters. My sister and I even left her for 1 hour with her sister while we went out together for a bit. This was a great benefit to my sister and I.

We will see what today brings.

BW ... B

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Postby rosieh » Sat Apr 21, 2007 9:51 am

Hi Barb

Does your mum still take Oramorph? I seem to recall she's taking something else, too. I'm glad she got out for a few hours - that must be good for her, and also good for your sister and you to get a short break.

My dad still isn't having much pain, but his main problem at the moment seems to be discomfort and pain from his pressure sores (he got these when he was in Warrington Hosp for nearly 6 weeks). As I have mentioned he is bedbound so the sores aren't really healing up fast (although they are improving slightly). If it wasn't for those, and the fact his legs won't work, I am sure we'd have been able to take him for a drive out somewhere when he first came home. Not too sure he's up to it now. Anyway, we're still waiting to be trained on the use of the sling, so haven't attempted to get him into his wheelchair yet.

I'm back home in Leeds for the weekend... my sister will be looking after dad if he needs anything in between the carer and nurse visits. My mum is there, too, which means that during the week my sis and I can get out for an hour together (shopping or picking up prescriptions etc).

Because Dad has pressure sores and also a daily injection of Clexane (he has a mechanical heart valve and therefore this keeps his blood from clotting) we have a District Nurse out every day. We also have Home Care help. This has meant that I can get home at weekends, and that my sister can continue to look after her own family as well as us both helping and supporting mum and dad. My mum can only do so much as she's disabled.

So, I'll go back on Monday and while things are "stable" I'll carry on coming home at weekends.

Dad finally opened up and let some emotion out yesterday afternoon. It was tough to see but I am glad he did... he's been bottling a lot in since his diagnosis, which can't be good.

I hope your weekend goes well. I bet you're looking forward to your husband arriving next week.

Take care

Barb (Canada)

Hi Jan

Postby Barb (Canada) » Mon Apr 23, 2007 10:49 am

My Mom was taken of oromorph as it was giving her hallucinations. They put her on oxycontin for slow releasing and oxynorm for on demand relief. They also prescribed 4000 paracetomol a day, which really seems to make the on demand last much longer.

We had a brutal weekend. Saturday was the wierdest day. After being out visiting her sisters on Friday on Saturday Mom didn't get up out of bed. Was very confused, her breathing was eratic and she told me at 4:00 p.m. that she thought she was dying. Her eyes were very glazed over, fixed large pupils in a stare (no blinking), breathing patterns were completely off i.e. large deep breathing, no breathing for 5 - 15 seconds, then short panting type breathing. She barely ate any food for two days. We really thought it was the end and her body was shutting down. My brother and I spent all night up with her watching her over. Sunday she still was in bed all day, still slightly disorientated and staring, but definitely more alert. Late Sunday I started to get nervous i.e. was the medication to much, where we at end stage, what was actually happening.

I called the District Nurse and they decided to come out and test my Mom's blood sugar levels. Of course I was in extreme trouble for that with my Mom as she is so scared they would put her back in the hospital. Can't win sometimes you know. Anyway blood sugar was normal.

Today she was up and had a bath this morning. Tried to do too much and is now back in bed, but I did get a call from Helen (MacMillan Nurse), who apologized for not pre-warning us that the adjustment in medication could put my mom in a very confused and sleepy state until the body adjusts to the increase, hence the Saturday and Sunday reaction.

No wonder this is such an emotional drain on people.

She is also having enormous emotional problems herself, which is hard know how to deal with. I think she still thinks she is going to get better!

On a lighter note, out of interest, where you raised in Widnes? My family has lived in Widnes all their lives and are quite a well known family in town. My uncle played Rugby for the Widnes, Great Britian and Australia and my parents run two different pubs in town (Alexander Hotel (Doctors) and the Black Horse in Cronton.

I was born and raised here also. Went to Fairfield Secondary Modern School left in 1972 (I think) at 16 years of age (rebelling).


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Postby rosieh » Mon Apr 23, 2007 11:20 am

Barb, sorry to hear your mum (and you) had a rough weekend. Seems like it is something of a rollercoaster ride for you all. The emotional side is very difficult to handle. The practical stuff is to some extent the easy part, I think.

My dad has taken himself off the oramorph (he was only on low dose anyway) as he says it isn't working. We're going to phone Helen and ask to talk through his pain and pain relief in more detail as we aren't really sure what the root cause it (pressure sores or the disease) and he also has a nasty, persistent cough which is troubling him. I am wondering if the cancer has spread into his lungs but he's had this cough since he was in hospital (from early February) and I know they did some chest x-rays there. He's had several courses of antibiotic so if it is infection, nothing is shifting it. We need to try to get him comfortable as he's getting quite distressed and more fed up with it all.

I was raised in Rainhill, and so know Widnes fairly well from my childhood days. Walking to Cronton - across farmer's fields which are now split by the M62 - was a favourite pastime when I was a kid. I don't know the Alexander hotel but know the Black Horse pub at Cronton. We were only talking about it the other day because somebody said the food there is good. Do your family still have it?

My husband was a keen rugby league player/fan over in Leeds in his younger days - I bet he would know of your uncle. Can you say his name? Or initials!

My sister and parents live in the Upton Rocks area (the new houses). We have family friends who know Widnes a lot better than I do - I should imagine they'll know of your family.

I did play netball against the Widnes schools as a youngster, but headed to Prescot School when I was 11 (in 1974, I think you have a couple of years on me!!).

I hope today is a better day for you. I'm not headed back until after lunch as I have some stuff to sort out here at home.

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Postby lucys » Mon Apr 23, 2007 4:45 pm

Hi all,

i have just found this site today and am thankful for people to talk to that are going through the same emotions as me, I am 26 and my dad is 58, we have only been living with pc for three weeks now and it has been the longest and worse three weeks of my life. I wonder how I will cope with what is to come. You are all in my thoughts


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Postby rosieh » Mon Apr 23, 2007 5:06 pm

Hi Lucy.... I am sorry to hear about your dad. One thing I have learned is that it is possible to cope... I think you will surprise yourself. :)

Do you have other family/friends to support you? You must be sure to take care of yourself as well as your dad.

I think you have posted elsewhere that your dad will be having treatment. I don't know much about the various treatments (chemo or alternative herbal therapies). Because my dad declined any offer of treatment that will prolong his life, I haven't really looked into them. Sorry I can't help with that, but if you just need a general natter or support then it would be good to hear from you on this thread.

Take care and I wish you luck as your dad embarks on his treatment.

Barb (Canada)

Hi Jan

Postby Barb (Canada) » Mon Apr 23, 2007 11:10 pm

Yes I have a few years on you!! I was born in 56. I used to frequent Rainhill a lot also. There was a youth club (I think it was a church hall) we used to go to dances at just inside Rainhill. Also dated a few boys who lived in Rainhill and took the bus back and forth.

My Uncle coached and/or played for Leeds. His name is Dougie Laughton.

My parents no longer have the Black Horse. They separated 16 years ago and my Dad left the pub a couple of years later.

Mom's day was okay until midday when she started with terrible liquid bowel movements. They lasted most the afternoon. She has eaten nothing today except 4 spoonfuls of porridge and a pear. It even got hard to get her to drink fluids after the runs because she was afraid it would take her back to the bathroom. We gave her some imodium this evening so hopefully that will work. Sleeping again from about 7:00 p.m. basically out of it.

Nurses have arranged for a commode to be delivered tomorrow for the bedroom. That may alleviate some of her concerns. She doesn't want us to have to be cleaning her up. She is very proud like that.

She keeps saying she thinks she is "going" and then says but maybe I'm not. Its very hard to know what to do i.e. call the family or wait and see. I asked her if she saying she thinks she is going does she wants me to call anyone, but then she says no not yet.

Mom also told me I had to go back to Canada to be with my daughter in May (she expecting her first baby). I told her that if I go back my daughter will blame herself for taking me away and that's not fair on my girl. My Mom doesn't really want me to leave her but its just she is afraid that she is being a burden on everyone else and spends 90% of her day worrying about us.

I know you said your Mom is disabled. How is she dealing with what's happening to you Dad?

BW .... B

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Postby rosieh » Tue Apr 24, 2007 9:07 pm

My husband knew your uncle's name - says he was a great player and coach - he saw him play, back in the day! And my sister and mum also knew of him, and they think my dad may know him - but I haven't mentioned the name to him yet. My sister seems to think my dad played snooker with your uncle but my mum doesn't. So they ended up arguing about it, LOL! :)

Did the Imodium help your mum? My dad has been a bit "loose" this last week, but he's barely eating anyway. He was taking two Fortisip drinks per day (600 cals each) plus an egg whisked in milk, a cup of hot choc and half a cup of soup. So now he's decided that the Fortisip is making his bowels loose and so has stopped drinking them. I'm not overly happy about this as it means his calorie intake has plummeted but I'm giving him today and then will chat with him about it tomorrow.

He is still taking Oramorph - I thought he'd stopped but I think I misheard something mum told me. He's been very upbeat and chatty since last night, which is good, but I know to expect some down days, too.

When your mum says that she is "going" I can understand your dilemma in not knowing whether to call people. Have you spoken to the District Nurses about how poorly they find her? I wonder if we have the same Nurses? We see Nurses from Moor Lane (Mary, Brian and Gail mainly).

It's also difficult for you to be so far away from your daughter and I can see why your mum would say she wants you to go back. Gosh, Barb, you certainly have it all going on at the moment. Is your daughter keeping well? Is she due in early May?

My mum is doing ok - she is disabled with arthritis, which means that she often looks perfectly well, but is racked with pain right through her body. She can look after herself and dad to the extent of making meals, tidying the flat (they moved to a smaller place 4 years ago to make life easier for themselves) and so on. However she can't stand or walk for long, doesn't drive, and just generally can feel fairly rotten as a result of her pain. She also has COPD (lung disease) but seems to have this under control with medication. Bless her - she's soldiering on really well but I know she is feeling the strain of it all. On an emotional level she is being strong (she says she isn't - I think she's doing very well) but I know she's devastated about what is happening to Dad now, and what is ahead for him.

If my sister and I aren't around, my mum would struggle with helping Dad - she can't get down to empty his catheter bag, move or lift him up in bed etc, so that is why we have help from Home Care, as we can't guarantee that we will be here every day at the times when Dad needs help.

Lucy - if you are around - how are you doing? Are you managing to get the information you need?

Barb (Canada)

Hi Jan

Postby Barb (Canada) » Wed Apr 25, 2007 5:25 pm

Things are a little better the last few days. MacMillan Nurse called on Monday and apologized for not pre-warning us that the increase in medication would put my Mom in a stupor and seem like she was going. Medication has now levelled off and she is having to take much less breakthrough dosages.

Still eating very little. Maybe a little bit of fruit or a Jelly, or Yogurt, but that's about all. Over the last few days she has tried to drink Ensure which was prescribed for her when we left the hospital. Problem is that she has thrown up twice after drinking them and today had another massive liquid bowel movement after one. I don't think they agree with her.

She is a little despondent that she has no energy and has only been out of the bed at the most 1 to 2 hours per day. She is still hoping that she is going to get better and be able to go out for walks or something. I can't see that happening somehow. Her calorie intake must be much less than 500 a day right now. In reviewing hospice websites that is not very good at all.

My daughter is due the middle of May (grandchild # 4), her first baby. A honeymoon baby no less. She was married August 5 in Banff, Alberta. It was beautiful and my Mom was there which was really nice. In fact we rented a condo for 16 at Panorama Village in BC for the week after the wedding and we all stayed there including my sister and her kids, and my father. It was the first holiday we had together ever. It was tough at times as my Mom and Dad haven't spoken in 14 years, but with everything happening now we are all so thankful for that holiday together.

Its good to hear your Dad has been more chatty lately and upbeat. Mom can have upbeat moments when she cracks a couple of jokes, but I find the mood swings are drastic. I guess we cannot expect anything else of them given their situations.

I feel for your Mom. It must be really scary and difficult for her.

I hope you can get your Dad to eat a little more, but I am told that as long as they are taking in fluids that the most important thing.

Best wishes .... B

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Postby PB » Wed Apr 25, 2007 6:28 pm

Hi Barb

You know your Mum is being sick alot, this was happening to Dad and the Macmillan nurse perscribed two drugs which work on what she described as two vomitting centres in the brain.

Perhaps you could ask about these?


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Postby rosieh » Wed Apr 25, 2007 6:36 pm

Hi Barb (and anybody else reading this!)

I wonder if it was the Fortisip drink making my dad loose, then? If your mum had a similar reaction.... mind you he was on them for a few weeks with no problem. I guess it's all part of what the disease can do to people. I was a bit sneaky today - I asked Dad if he wanted to try some bread and butter pudding, and he said he would. So I made it with part milk/part Fortisip as I am a bit worried that his calorie intake has dropped by 1200 per day since he stopped taking them.

Then I made him a cup of hot choc and used some fortisip in that... it tasted nice actually, not that I personally need the extra cals! He's having fresh mushroom soup later so I'll sneak the last of a bottle into it. Naughty, I know, but at least he'll be getting some nutrients and calories from it, and if his bowels do go loose again then I'll have a word with his GP when she visits tomorrow.

Dad only has the Fortisip Neutral so you can put it in pretty much anything where you would use milk or cream.

I guess if your mum is hoping to get out again then at least she is trying to be positive. I suppose the difficulty will be managing her expectations if she can't do much. I hope that she does pick up a bit.

A honeymoon grandchild - that's wonderful! The wedding sounds lovely - we were in Banff last July (my husband's 50th Birthday present and our first wedding anniversary!). In fact we were there on Canada Day - which was brilliant. I loved the parade. Do you live in BC? We had a fabulous time there - Vancouver, Rocky Mountaineer, Jasper, Banff, Waterton Lakes. It's great that you had all your family together last year.

Does your mum take plenty of fluid? My dad's drinking water all day, so pretty good in that respect.

Barb (Canada)

Hi Jan & PB

Postby Barb (Canada) » Fri Apr 27, 2007 4:29 pm

Doctor told us to leave Mom off the Ensure drinks as she agreed they were probably what was upsetting her stomach. She said its a very high concentration of protein at one time and given the fact that the cancer is all digestive related, probably too hard on the stomach.

Mom ordered fish & Chips from Pauls (Lowerhouse Lane), for supper last night. Blew me away. She is drinking lots of fluids which is the saving grace right now. I have found her mood swings are tremendous though. Goes from a real fighting spirit to complete despair and denial.

She looks so pale and thin though I am wondering if this is the rallying before the storm.

Jan, we live in Alberta (Fort McMurray - home of the Oilsands). Minus 35 winters, lots of snow, population of 80,000. Boomtown atmosphere for the last 10 years which has been difficult to live with (tripled in size in 10 years). It was previously a nice, quiet community with lots of English, Irish, Scottish. Its about 9 hours from Banff, which is nothing in Canada and we often do it for a three day weekend.

We are building our retirement home right now in Invermere, BC. Its only 1.25 hours from Banff down the Kootenay Pass. Nice Mountains, nice skiing and a lake.

Have a good weekend all.

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Postby rosieh » Fri Apr 27, 2007 11:22 pm

Hello again...

Dad's doctor came out yesterday and also told him that whilst he's been on Fortisip for a while now, his system may not be tolerating it too well because the bowels need fibre to keep them working properly and aren't really made to cope with a liquid diet. She's suggested he try just one Fortisip drink each day, and spread out in 2 or 3 "portions". He's making a big effort to eat more proper food, but the portion sizes are so small as he can't cope with much more.

I hope your mum enjoyed her fish and chips! I've heard about Pauls but never been there. The mood swings must be tricky to deal with... I hope she has a good weekend.

Dad was a bit quieter today (he was quite good at the start of the week, funny and mischievous almost) but has not been as bright this last day or two... not miserable or depressed (like last week), just quieter and looking more tired and ill.

I would recommend the Final Gifts book. I'd loan you my copy Barb, but my mum and sister have to read it yet (I read it over the last few days) so I don't know when I'd be able to get it to you. It's very much focused on a few key areas relating to end of life, but the case studies in there are very reassuring. It has helped remove some of my fears about what is ahead.

I think the roadtrips that you do in Canada and the States are incredible! When we're travelling (in any country) we try to limit our driving to a max of 4 hours per day. I've done 8/9 hour return trips in the UK (Leeds to Norwich/Leeds to Southampton) on the odd occasion - but only for work, not pleasure! I've felt tired after it, too.

Your retirement home sounds wonderful. We picked out our retirement home in Vancouver (on the waterfront). In our dreams :)

Well I'm back in Leeds this evening, and catching up with my husband and the washing! Barb - thanks for your kind offer of help while I'm out of town - I do appreciate it. As my sister is still in Widnes, I think mum and dad will be ok. Likewise, if there is anything I can do for you just let me know.

I'm back over on Monday, unless anything unexpected happens over the weekend.

Barb (Canada)

Hi Jan

Postby Barb (Canada) » Tue May 01, 2007 7:37 am

Well I think I have figured out what was really wrong with Mom the last couple of weeks. I think she was totally depressed. The day after she came out of hospital from having the stent put in was the day she was told that she was too weak for the clinical trial and too weak for regular chemo. She then took to the bed the next day and we thought it was still post stent recovery and the PC.

The last few days she has been having good days. Been up, dressed, hair done, eating better, and went out yesterday for a lunch with my sister.

She hasn't been sleeping well and she told me she's afraid to sleep because when she spent the week in bed she was having vivid dreams (she can't remember what about), and waking up crying. I think she realized she wasn't helping herself lying in bed she was just lying there thinking and getting more and more depressed.

Tomorrow she has an appointment with the Professor at the Royal. She told me this morning that she really wants to be having a good day when she sees him so that he might change his mind and offer her chemo.

The oncologist told her that chemo only helps 1 in 4 and the side affects can sometimes take away the quality of life you have. We don't particularly want her to have chemo because at least now if the pain is in control she can get up and maybe go out for an hour and have visitors and feel quite well (under the circumstances). However, if that's what she wants we will support her. I am just afraid that it could be a bad decision and take away what bit of good days she has.

My Mom is convinced that there will be a cure at any time and this is really not happening to her.

I know I just went out but I needed to vent the challenges!

I will order the book Final Gifts. I think you said previously you got it from Amazon. I will check that out.

Thanks. B

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Postby rosieh » Tue May 01, 2007 10:28 am

Barb -

I'm glad that your mum has picked up a bit.

I guess it will be difficult whichever way it goes with the Professor. Is it Professor Neop (can't spell the full name!) who your mum is seeing?
I suppose if they don't offer any further treatment your mum could get quite down again. And if they do offer chemo, then I understand your concerns about the side effects impacting on quality of life.
It's a toughie. Good luck for the appointment.

My dad has been stable. He's been a lot more comfortable (and less "depressed") since starting on Zomorph - which is the slow release low dose morphine. His biggest issue just now is a persistent cough which is keeping him awake. It must drive him mad. His doctor doesn't think there is much else she can do for that other than give him linctus. Several courses of antibiotic failed to clear it up.

I hope today is another good one for you.