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

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Barb (Canada)

Hi Jan

Postby Barb (Canada) » Sat May 05, 2007 5:40 am

Yes Professor XX is my Mom's PC Specialist. We didn't go to see him on Wednesday. On our GP's recommendation we talked to X (edited by moderator) (MacMillan Nurse under the Prof), and he indicated the appointment was simply a follow up from the stent being put in and to make sure my Mom had good community support (i.e. community health care - GP, Nurses, etc). He said as we had an appointment at Whiston for May 21 for reassessment for chemo there really was no point in dragging in there if all was well and the GP was visiting weekly. We therefore rescheduled it to the end of August.

Mom's been quite good all week, but pain has increased steadily over the last 3 days. Breakthrough was steady for 8 days at 20 mg, and increased 3 days at 60 and the last two days we hit 80. Mom is describing a new type of pain this morning (been up with her the last hour) high up in her abdomen. Of course she won't let me check with the nurses so we will just have to wait it out for a couple of days and see what transpires.

Thursday night she had her hair done and was going to go visit her line dancing friends at the line dancing for an hour (she's been saying she was going to go for weeks). 5 Minutes before we were due to leave she had an absolute panic attack. It was really something. Told her she didn't have to put herself through that and she cancelled, but was really upset that she had got so anxious and angry towards us. Instead we went to visit her sister for an hour and she enjoyed a brandy.

I have some upsetting family news to tell her in the morning, which we really can't withhold from her, but I know its going to upset her a lot and will probably make for a tough emotional day.

Hope your weekend goes good and hope your Dad has a better couple of days. Have they tried a strong cough medicine with a high percentage of coedine in it. I find that's the only thing that will get rid of a really persistent cough that won't go away.

Talk to you later .... bracing for the weekend.

B

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Sun May 06, 2007 9:41 pm

Hi Barb (and anybody else who pops in). I hope the weekend is going ok.

Does your mum still have the new pain and are you any closer to working out what is causing it? I think the Macmillan Nurses are supposed to be pretty good at establishing cause of pain (and best relief) so it might be worth calling them on Tuesday?

I hope your mum was ok after you passing the upsetting news on to her. Is there anything the Nurses can give her for anxiety attacks? Although I guess the last thing she'll want is more tablets if she's anything like my dad!

It's a shame she couldn't get to meet up with her friends. Dad has surprised us this week and asked to see some old friends who he'd previously said shouldn't visit him again (he had wanted them to remember him "as he was"). I'm delighted as I do think it does him good to see fresh faces. Hopefully they'll come and see him early next week.

I'm at home in Leeds for the weekend. Mum says that Dad is ok, but sleeping a lot today.

He has a codeine based linctus, but to be honest I think he does have to clear his lungs (sorry if that's too much info) or he'd have other problems. Sometimes he gets a few hours rest from the cough, which is good, and he's sleeping better now that his GP has got him on slow release morphine.

Barb (Canada)

Jan - Update

Postby Barb (Canada) » Wed May 09, 2007 7:47 pm

Hi Jan .... GP was round today (she had been away for a few days). Mom's medication needs to go up 100% but I don't want the same thing to happen as last time (i.e. two days of "completely out of it"), so we are going to increase in two stages 50% tomorrow and 50% on the weekend. Hopefully all will go well, we will get some pain relief, and Mom can get some sleep.

Doctor can't say what is creating the different pain, just there's a lot going on in her insides!

She did give her a new tablet which is combined for anxiety, sleeping, anti-depressant and pain. Can't remember the name of it now but we will have it tomorrow. She will take 10 mg to start and I have been told to increase to 30 mg as she gets used to it.

Emotionally she is still struggling, not going to see her new great grandchild, not going to see her granddaughter who just moved to Australia, will not see my children again. She was very emotional when my husband left on Monday telling him she loves him like a son. Of course she knows she will not see him again. She also keeps asking "how is it going to happen". She has asked the Doctor two or three times and us. She's afraid she just might collapse when she is out. All have reassured her that, it is extremely unlikely that that's how she will pass (including the Doctor), but she is still worrying.

I saw your posts respecting the news story yesterday about the mis-diagnosis of PC for the gentlemen down South. My Mom just happened to be up yesterday morning watching the news. Her remark of course, was "well they can make mistakes maybe they made a mistake with me". How do you tell someone that that's not likely given her present state of health. I did offer to get her a second opinion though!

I got an e-mail picture from my daughter this week of her bare belly. She is absolutely huge, but not a single stretch mark in sight. She has gestational diabetes so she is hoping the doctor will induce her early next week as she doesn't want the baby to be so big she has to have a C-Section. She's normally on 5' 1" and 110 lbs.

Hope all is going well for you this week for you and your Dad. Give me an update when you have time.

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Wed May 09, 2007 10:23 pm

Hi Barb
I'm sorry your mum hasn't got on top of her new pain yet. I hope the new painkillers and tablet work for her.

Emotionally my dad seems very reconciled with what is happening. He even planned his funeral with us yesterday and today, so we're all clear on what he wants and we've confirmed to him that the family are very happy with his plans and will honour them. I think it has been important for him to influence and control as much as he can, as he's always been very much one for giving out orders!

In terms of "how will it happen" this is something that the Macmillan Nurse might be able to have a chat with mum about. It is referred to a lot in Final Gifts (as it is on many of the "End of Life" websites). I know that each case is very different and I hope the Doctor/Nurse can reassure your mum.

Maybe the new combi tablet will help ease some of your mum's anxiety.

We had a guy called Richard who came to see Dad to do some Reiki a few weeks ago (through the Macmillan Delamere Centre, 01928 753502). He actually spoke to Dad about what happens when you pass (on a spiritual level) and put things across in a very comforting manner.
He's also a medium and offers either Reiki only or Reiki plus Medium services (if you're not at all into the Medium type of thing he doesn't push it on you). I know he isn't the only Reiki practitioner to volunteer through Macmillan, but they put him onto us because we needed somebody who would do a home visit. I don't know if this is anything that your mum would be interested in but I am passing the info on just in case.

Dad has found Reiki to be very relaxing.

Dad is doing pretty well. His mood seems a lot better since he's been on the Zomorph (he's on low dose slow release morphine) and although he seems to me to be losing a lot of weight again, all things considered, he's comfortable. Still no pain. Still no jaundice.
I spoke to him about the guy who was mis-diagnosed, and he said that he's pretty sure they haven't made a mistake with him, because he can see his own body wasting and breaking down.

I hope all goes well for your daughter with your new grandchild. Thank goodness for the internet at times like this! I watched online video of new twin babies born to a friend of my sister recently, it was amazing!

Well I will sign off now and hope that your mum gets some peace, rest and pain-free again soon.

Barb (Canada)

Hi Jan

Postby Barb (Canada) » Tue May 15, 2007 9:51 pm

Got Mom's pain back under control. The 50% increase of Oxycontin with the Amitriplyne added in made a significant difference. She is now only taking two doses of breakthrough (60 mg in total of Oxynorm). She has no pain throughout the night and is finally sleeping more at night.

We have hit the bitter, angry, fighting patient stage though. MacMillan Nurse was here yesterday and did a pyschological test on Mom and she believes Mom really needs an antidepressant added in also. Mom is totally against that but I think we can convince her it might help her very despondent moods. Of course after the MacMillan Nurse left Mom stated that she thinks its all a waste of time.... its not going to stop what's happening.

Now and again I look at her and I think she is getting a tinge of yellow back. It could just be reflections or me getting paranoid, but I do think I see it from time to time. That shouldn't be the case though as she had a metal stent put in which should not block.

I had to leave the house a few times in the last couple of days to get a break and today I attended the Cancer Support Center downtown today in desperation. I have a counselling session booked for myself on Friday and a facial and reflexology booked for next week for myself all through the Centre.

No grandchild yet .... still waiting.

Hope all is okay with you and your family.

Barb

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Tue May 15, 2007 10:52 pm

Hello Barb - I was wondering how you and mum were doing.

It's good that your mum's pain is under control, but not so good about the psychological side - a lot harder to deal with, I think. Did the Nurse prescribe an anti-depressant? (Do Macmillan Nurses actually prescribe or do they organise drugs via your GP?). I hope your mum will take them - they can take a little while to kick in, can't they?

My sister and I found a leaflet for Carers in Halton district offering various complimentary treatments and days out etc... I haven't heard of the local Cancer Support Centre though. Hope you enjoy the treatments. I am thinking of booking some more Reiki for mum and dad.

Barb - if you ever fancy a coffee and a chat just let me know and we can see if it can be arranged.

I have a day out tomorrow! I'm going to Manchester to a Financial Services Expo - its the business I worked in before I took redundancy in March, and I just want to show my face and do a bit of networking so that people still remember me once I'm ready to look for work again (whenever that will be).

Dad is pretty stable really. The only new thing is that he's started to vomit every morning when he wakes up, so we'll mention that to his GP when they call tomorrow. Apart from that, still no pain and still no jaundice. It does puzzle me why he doesn't have these symptoms, but I did some internet research at the weekend and I think 25% of PC patients will have no jaundice, and I can't remember the figure for "no pain". He's losing weight again but that's no surprise as he has stopped drinking the Fortisip (maybe a small amount each day) and eats tiny, tiny portions of food for his meals.

Ah well, maybe next time I hear from you, you'll have your new grand-child :)

Barb (Canada)

Hi Jan - Good News !!

Postby Barb (Canada) » Wed May 16, 2007 11:14 pm

Well my baby girl and her husband gave birth at 12:15 (MST) today, to a baby boy, Declan Timothy Abel, 8 lb 3 oz. Difficult but fairly fast delivery. She is tiny, 5" 1" and 110 lbs normally. Baby was posteria with cord around its neck. Being medics both my daughter and her husband panicked when baby had to have assistance to breathe, but all are well now.

The Cancer Support Centre is downtown in Widnes (across from the new health centre) in Alforde Street (where the old market used to be if you know Widnes). You should stop in there some day. They are open 10:00 a.m. to 3:00 p.m. and offer quite a selection of complimentary therapies and services similar to those offered at Halton Hospice and they are offered to both cancer patients and their caregivers.

When I got home from there yesterday Mom apologized and acknowledged that she is getting confused and promised to be a "good" patient from now on. We got her ready and took her to St. Helens to buy some pants (because nothing fits). She had a fairly good trip and has been better today. Of course she is upset that she won't see her new great grandchild, but there's nothing I can do about that other than to show her pictures once I get them.

The MacMillan Nurses don't prescribe they just recommend to the GP.

GP was here today and instead of increasing oxycontin again we are adding in 20mg of Citalopram in the mornings. Its an anti depressant which also acts as a nerve pain block, which will work as a compliment to the Amitriplyne at night. We will see how that works for a week before making any further changes.

My research also indicates that no everyone gets jaundice only if there is a blockage or if the liver is failing.

Its good your Dad doesn't have that, as it is very hard on the systems. But tough that he is now starting to vomit. Your GP should be able to give you anti sickness pills for your Dad. If he isn't eating much you don't want him vomiting every morning as well or he will get considerable weaker, faster.

We should try to get together for coffee. Maybe we could arrange something for sometime next week. I go to the gym every day for 2 hours but could add on a coffee sometime.

Talk to you later. B

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Congratulations....

Postby rosieh » Wed May 16, 2007 11:22 pm

Hi Barb, and congratulations on a healthy grandson. Wonderful news - I bet you can't wait to see the pictures yourself.

Let me know about next week and we will try to arrange something. If you don't want to publish details on the forum, I think we might be able to email privately via Sue, the administrator.

Jan

Barb (Canada)

Last Night's TV

Postby Barb (Canada) » Wed May 16, 2007 11:35 pm

Hi Jan ... did you happen to watch BBC 2 last night between 11:30 and 1:00 a.m. this morning. Ester Rantzen did a documentary called "How to have a good death." I caugth the last hour of the show. It was following terminally ill cancer patients and one was located at the Royal Liverpool on a program called "A Clear Pathway" or something to that effect. It followed two patients through the end of life cycle and I found it quite enlightening and gave me some kind of assurance that it can be peaceful. I am trying to find out if it will be re-aired at a later date. I actually thought my Mom may have found some reassurance if she had watched it, that death need not be painful, but it was on way too late for her to watch in any event.

B

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Thu May 17, 2007 8:13 am

Barb
I caught the first half of the show but didn't see it through to the end. I switched off after a while as I was getting tired and also not sure if I could watch the end....

I'd heard of the programme when it was originally shown here last year. Funny thing is - I had little interest in it then, it held no relevance to me!

Barb (Canada)

Hi Jan - Update on Mom.

Postby Barb (Canada) » Mon May 21, 2007 5:49 pm

Mom saw oncologist at Whiston today. He again said he couldn't recommend chemotherapy for her as she is very advanced, it will not give her anymore time and would be very hard on her.

She still keeps thinking that someone is going to tell her that she can get treatment and will be cured. Its so sad.

How is your Dad doing this week and how is your Mom? At least the sun is shining today. Have you been able to get your Dad out much?

I had an e-mail problem on the weekend so lost your e-mail address. I have e-mailed Sue and asked her to resend it. Once I get it I will e-mail you re Coffee this week.

B

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Mon May 21, 2007 6:08 pm

Hi there.
I'm sorry your mum wasn't offered treatment, but at least the oncologist was honest about it not being of any help.

Yes, what a beautiful day. I got over here early afternoon.

We haven't been able to get my dad out at all, Barb. Will explain properly when we meet up - bit convoluted to try to type out! But he's fine - feeling quite well and is happy enough. His only expectation is to be pain free and comfortable - he's accepted the fact that he won't get better at all.

Looking forward to meeting up, if we can arrange something.

Take care.

Barb (Canada)

Coffee

Postby Barb (Canada) » Mon May 28, 2007 9:37 pm

Hi Jan .... how is your week starting out and how was your weekend at home?

I have sent you an e-mail re getting together for Coffee this week if its convenient for you.

How is your Dad? Does he suffer a lot from feeling cold and does he have the weirdest noises coming from his stomach?

My Mom is freezing right now. All the heat in the house is turned up, but she is still shivering and cold. Have the heater on in the living room and she was lying in front of the gas fire this evening to get warm. She also has the absolute weirdest noises coming from her stomach. Sounds like a small tap running at times.

Take care .... B

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Tue May 29, 2007 10:25 am

Barb, thanks for the email - have replied this morning.

My dad is doing ok. He's very chatty. Eating less and less, and getting thinner. He's also talking a lot about how thin he's getting and when he might leave us. I don't know if that is significant or not. He was talking about getting his friends over to see him in the next week or so, before he wastes away. He is sick every day on waking, but says it doesn't make him feel bad so he doesn't mind! He was starting to be sick all the time but since the doctor gave him Buccastem it is under control (apart from being sick every day on waking). His GP is coming out to him tomorrow so I'll mention it again.

He doesn't get cold - in fact, if anything he's usually feeling warm. But yes, his tummy does gurgle and roll a lot. It's very loud.

I hope your mum can get herself warm - is she still able to get into the bath? Does a hot bath help?

Take care
Jan

Barb (Canada)

Postby Barb (Canada) » Sun Jun 10, 2007 11:20 pm

Hi Jan ... I really enjoyed lunch on Wednesday and I am looking forward to Thursday. Hope you had a good weekend at home and hope your Dad is doing okay.

We have had a very weird weekend with Mom. Been up for a couple of hours each day but is very unstable on her feet and very, very confused. Back in bed by 3:00 each day and basically out of it until 10:00 the next morning. Cornflakes and three cookies was the only food intake today. I sat with her from 7:30 tonight until 10:30 and I think she opened her eyes for 2 minutes (tops), every 15 minutes or so. I am trying to check out the new drug they gave her (pregabalin) which is a nerve pain drug. The blurred vision, loss of balance and confusion appear to be side affects of this drug, but she is only on the smallest of doses. I guess we will have to check this one at with the MacMillan Nurse and Palliative Care Doctor on Tuesday. The good thing about it, is that it has kept the pain away without the need for breakthrough pain killers. Roundabouts and swings, roundabouts and swings !

Talk to you later. Give me a quick update when you get a minute.

B