Rosieh - Parents

[Guest]

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

[rosieh]

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

Jan

[Guest]

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).

Barb

[rosieh]

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.

[lucys]

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

lx

[rosieh]

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.

Jan

[Guest]

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

[rosieh]

Barb

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?

[Guest]

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

[PB]

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?

Px

[rosieh]

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.

[Guest]

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.

[rosieh]

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.

[Guest]

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

[rosieh]

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.

Regards

Jan

[Guest]

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]

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.

[Guest]

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]

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.

[Guest]

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]

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

[Guest]

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]

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

[Guest]

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]

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!