Dear Bell,

I am so sorry things have not yet improved and Debs has very eloquently said everything I am thinking. I hope the new concoction makes the weekend bearable and that a bed becomes available really soon.

Much love,

Cathy

Hello ,Finally have got some relief ,syringe driver with pain and nausea going through is working they also gave him a couple of injections for good measure also, so he is sleeping sound and just dosing on and off quite comfortable .Nurse came back in today to top it up and looks as if this will get us through till Monday Then will see what the next step is as I don't think sleeping 24 /7 will be allowed to continue overlong .His appetite is gone but through a bit of nagging getting the old jelly ice cream and custard down and it is staying down .

Was so nice to get a full nights sleep and see him relaxed and comfortable .But .....sods law had to intervene as when I got up to get my morning coffee which is a ritual there was no power due to a storm last night.So got the camping stove out and my old pink goonie and just went back to bed .Came back on at 2pm so all heated up now and back to normal .

Thanks for your caring words,

Bell.

Dear Bell,

I am so glad that you have both managed to get the rest that you must have so desperately needed. I know that you still must have many concerns, but I hope that this temporary relief will put some fresh wind in your sails and help you cope with next week.

Glad you were prepared for the storm with your camping gear!

Best,

Cath

This is great news, Bell. At least you have both managed to get a rest. Lovely.
I hope this week sees big changes and you soon have some balance in your days (and nights).
Deborah

hi bell and paul
i am so pleased that paul and you had a good night apart from the power cut.i really hope that they will now be able to control the pain much better for him.i have been thinking about you both and hoping for some respite.take care love shirl xxx

Hi ,Still treading water and feeling disheartend and that chill starting again in my stomach .Still no bed availability and working from house .The pain is under contorl with just the odd top up and yesterday he sat up in afternoon for a wee while which was great .Told nurses about his mnouth feeling sore and full of salt making food difficult and he is not hungry .Last night however he was really distressed saying his mouth was so sore and felt down the left hand side of throat had an open sore .Got the magnifying glass and light and checked closely .His mouth indeed is bone dry worse than normal and looks a little swollen in parts plus there are largish patches of white ,I think they could be ulcers and probaby down throat which is why he feels there is a sore but could not get down to see that far .Now thinking this could be a side effect from Amitriptiline or even Gabapentin as both say they can cause dry mouth and ulcers on leaflet .Has anybody else on Amitriptiline had this .Can see him falling back the way so quickly now and reminds me of weeek 3 after Radiotherapy first time round .

The pain control are coming out with nurse at 2 pm to top up driver and have a wee catch up but I think I will let them know this morning .Feeling that silly way of thinking they will be saying goodnes SHE is on the phone again .Started Gelclair last night which I had in cuopboard to try and ease them and will carry on with that this morning .The white sore patches are large and on top and under tongue and up the side where as before when he had RT problems they were a lot smaller and dotted about.The pain control is working but last night he was so twitchy and kept waving his arms about pointing and drawing things, he was not aware of this and I know it is just the analgesia but again just started last night probably just building up on him.

Has anybody been on Amytriptiline plus Gabapentin who experienced this ? .(Amitriptiline only went up 50mgs on Friday night, week before was 25mgs)

Any input would be great ,

Bell.

My dear Bell,

Your post has moved me to tears, I feel so for you and all the anxiety you must be feeling. I am still dreading tomorrow as I thougt I saw a white patch in Chaz's mouth last week, so I can understand where your mind and tummy are. I don't know what to say except please don't worry about people thinking that you are on the phone again. I know I have felt exactly the same at several points in the past but they won't think that, because Paul is in real distress and you both need lots of support.

I don't think you should worry about what people think anyway. You want to do everything you can for the man you love and that is completely acceptable. I am sorry I can't add any practical information about the drugs, but I don't know anything about them but I am sure they can cause all sorts of nasty side effects that might be able to explain some of the soreness in his mouth. Hopefully Liz will pop up soon as she seems to know a great deal about pain control.

Bell, have you got any of your family or friends around to give you a big hug? It does sound as if you could do with one right now. Here is a virtual one from me ((((((Bell))))))).

Do keep posting and letting us know how you are doing.

Love
Cath

Hi! Bell and Paul
So sad to hear that the drama still continues. I haven't had to contend with this drama but I feel that Paul and I are on the same level ~ we just can't seem to break through the pain barrier.
The problems that are put before us all the time seem to knock us at every turn but I feel that with your care, the same as the care I get from Deb will help us through this bad time and soon we will be back to our old frivolous ways.
Currently I am in the spot that I can't see even to type, so I am having to dictate to Deb. My posts won't have the same jocularity (or poor spelling!)as they have in previous time. I am seeing an optometrist on Thurs to try and get something done about my eyes but at present seeing is becoming a major issue. Deb has to read all my mail and posts however I'm going to try to keep up with posts so that you know I'm still here, and that you ain't lost me yet!
Love
Trev

Hey there honey
i have to say i can't help really ,but i would think its more likely thrush than anything else in his mouth.That is one big dose of amytriptilline though,and way above anything rob had .I have never heard of the other drug he is on ,but i will google and read all about it so i know for another occasion lol.

As for the rest Bell,it doesn't matter if you ring them ten times a day,i have never encountered a palliative care service that EVER think you are on to them too much.its what they do.I called mine at 2am one morning and they were there in 15 minutes.

Can i just ask whats in his syringe driver Bell?

I hope for you both that the bed becomes available soon,its so frustrating but so sadly a common thing with hospice beds.To few beds for too many patients,although i must say the hospice i work in isn't very often full to capacity.

love liz

Hello Lizz ,another day nearly over and more dicussions today .His mouth and down right hand side of throat covered in Thrush and also mouth full of large ulcers now .So....now added diflucan today a weeks course and more Gelclair to help mouth, she said left hand side of cheek needs checked also .They have arranged an appointment for tomorrow at clinic with our specialists registrar as the man himself will not be back till next week .Even the inside of his lips are all sore and ulcerated .I laboured the point about one of the drugs maybe causing this but not agreeing to this yet and want to know what they say at clinic tomorrow .

At least we have the main pain under control and now have his mouth to sort out what a mess he is in .Hoping tomorrow does not bring any more bad news .

His syringe driver Lizz is Oxycodone 20mgs which will be increased slightly tomorrow plus Cyclizine 150mgs plus the water and runs 24 hours .They say it is not an inordinately high dose but Paul being so sensitive to medication it affects him so easily, but it is working .Bedtime he has the 50mgs Amitriptiline plus 2 Gabapentin they are 100mg each plus laxative as all this stuff is hellish for constipation .In the morning it is a 20mg Omeprazole plus 1 low dose steroid and 1 15 mg Meloxicam. During the night if he needs a top up he has oxynorm capsules .

Our hospice is not very large and has to cope with a lot of areas .At least they keep in touch daily and are so lovely and couldn't be more helpful we would be so lost without them .

Thank you for your intersest and responses. So helpful to have an outlet without having to burden the family constantly .In answer to your lovely cuddle Cathy they are all there but not on my doorstep for popping in .If they knew how upset and agitated I have been recently they would down tools and take leave from work and I don't want them doing this at present especially with the economice climate.I am hoping for some kind of turn around and the weekends with them are lovely.

I am also fortunate I have two special friends who are fab and keep me going and are the main ones I can let the old gaurd down with also my brother as we went through a gruelling time with him and my sister in law. I only have my brother as both my parents are no longer here .Paul has his mum and two sisters .The eldest sister never married and lives with Paul's mum we call them hinge and bracket and are lovely .Paul's younger sister is married and had 5 children and now has 7 grandchildren and another on the way she is kept very busy with baby sitting etc but they are all very supportive .

Love to you all and just in case you are around Charly we are thinking of you and would be lovely to hear from you .

Bell and Paul.

hey Bell that was strange as i was just getting ready to post on here for the 1st time and got to the bottom and saw the note to me you must of felt me hovering ...

I have been reading this but been bit shy to post but reading that you feel that you are hassling has made me want to say to you , please please don't think that you are bothering folk by phoning up. anyone that is involved in pallative care has a special heart and will not care if you have to call every 5 minutes . A few weeks ago i was so desperate for help and answers i would of walked miles to knock on someones door (ask Ange n Liz)

Can only send my love and thoughts in this post

Aw Charly ,hello ,so nice to see you posting what a chaotic dispairing life we are experiencing and I know you must be feeling lost and sore at moment please don't be shy and hovering you are a very valued member here and we would hate to loose touch with you .

Thank you for posting and I know you are right, bothering and phoning is what it is all about and when I speak to them and they come they are so helpful and nice.

How are you Charly ? when you feel up to it please post. I managed to get onto the members photgraphs without computer crashing and thought how wonderful and happy Nigel looked I think we were all so shocked at the news and appreciate you must be feeling so low and lost ,please know we are here to help you in any way we can ,even if it is just to share .I have found in the last couple weeks of another downturn it does help to type out a few feelings .

Thank you for your post Charly ,we have been thinking about you often .

Love Bell .

thank you for such a lovely post x

that gabopentin sure has a lot of nasty side effects including dry mouth,but i dont think the drugs are responsible for the thrush directly bell,more likely the dry mouth and lack of saliva allowing bacteria in the mouth to multiply.When rob had thrush,his mouth was indescribable with open sores dead skin hanging off, great areas of yellow infected tissue.....i couldn't even begin to imagine how it felt.rob was treated With nystatin which is the normal treatment of choice for thrush he had to squirt it into his mouth and then swish and swallow.it does the job really quickly,but rob ended up on it nearly all the time.I am surprised it wasn't picked up sooner as it easy to spot.
Robs breakthrough med was oromorph which is just plain liquid morphine,oxycodone seems to be used widely in the states but i havent heard of it so much here.How is he going on at night times now?

love and hugs liz

Hi Bell,

Am pleased to read that you are going to see the registrar today and that the wheels are in motion to get Paul some relief. Also glad to hear you have some fab friends close by and of course understand your desire not to worry family.

I don't have any family other than Chaz, but my wonderful friend Amanda is great. I don't know how many get well or congratulation cards she has sent Chaz over the last 6 months, but they are plenty and she even remembers to text before appoitments etc, bless her.

Charly, it is good to see you posting here and on Trev's thread. I too think of you and of Nigel often and I hope you feel able to use this site to share your feeling if you want to.

Will keep my fingers crossed for Paul.

Best wishes,

Cathy