wow these men of ours sure do like to make the ride exciting don't they?Reading your posts takes my mind back to our "fun" moments.The cutting of the syringe driver tube,the peeing in a saucepan in the kitchen,the pulling out of his iv prior to getting dressed and coming home from the hospital.Its sooo wearing after a while as you just feel you can't turn your back for a moment,and then of course when they are safely tucked up and sleeping,that overwhelming feeling of despair and panic.
I would gladly have taken robs pain if i could have done and i am sure you feel the same Bell.Seeing your big strong man reduced to such a level is just about the worst thing i can think of.I hope you get some answers and some relief for both of you soon .

love liz

Yep ,Cookey you have got it in one ,thank you for all your advice on the medication .it is helpful to discuss things on the forum as people are more in tune to the pitfalls and emotional consequences.The family are wonderful and helpful but don't seem to understand things take time to get under control .

Your a wee star Liz and I know the courage it must take to continue with your support and valued experience when you are still hurting so much inside and missing Rob.

Your help and advice is greatly appreciated .

Bell x

Bell I was a bit nervous about where you were going to put that medicated carrot .........
We are on a real roller coaster ride, don't you think? At present Trevor is so good I wonder what the fuss was all about but last week my heart and mind were in a spinner. You want to and are willing to do whatever it takes to help them cope, that goes without saying however at the same time your heart is in your mouth while you hope your current efforts are going to do the trick. While all of these emotions and thoughts were going through my mind, I had periods of wanting to bawl my eyes out and others of wanting to give Trevor a real good shake! I'd have been left with a pile of rattly bones if I'd done the latter so probably best that I refrained.
You are doing a great job Bell in a very difficult situation. Hang in there and keep on posting. We're all here for you, thinking of you and sending you love and hugs and warm fuzzies and anything else that might help you get through each day.
Toodles
Deborah
PS If I was making a movie in Scotland, I think I'd star Chevy Chase as Paul. I love the scene from the bedroom window and the cats. (I found that very funny)

As I wrote to Trev and Deb,

"Hi you two,

My beloved laptop acquired numerous viruses and Trojans (no, not the condoms) and has been out of commission since Thursday. Everything is back to normal now and all I have to do is reinstall all the games I play (good fun while recovering from whatever) and a ton of other stuff that I amuse myself with."

I wondered about you and Paul as well for an obscene number of times over the past 4 days.

The rabbit story was a scary one! Be sure the handyman takes the air rifle home with him.
Take care - I've got to run off and answer about 200 emails!

First I think I'll take a look at Sharifah's blog to see how she's holding up.

I love all of you.

Mimi

Hello , just want reassure you Deborah the medicated carrot was for the bunnies, was thinking they might all keel over in a stupour then I could bag them with my marigolds and drive them down the road and pop them out in a field.

Nice to see you back Mimi had a few problems with my own computer and it took forever to get it up and running ,you feel really lost without it .I had problems with our server then it just kept freezing and I think it just needed a good clean out but had to back in twice .

Last night was more of the same so when they phoned this morning it was decided to carry on with the plan and keep upping the various doses at intervals of 3 days ,they will check up with us each morning .They said Paul's dryer mouth is due to medication and also the salt taste which is driving him madwhich i kind of thought myself , but have said he must keep going in the interim and hopefully should settle ,gave him some new pastle thing to suck that is meant to stimulate saliva was called slivax I think, he sucked one and it continued to stick everywhere so was put in bin .Maybe when he is in better tid he may give them another go ,just wondered if anyone else may have tried them or want to ,will check on the name were given on prescription.

He has to keep to the plan for the next week or so and if nothing improves told me this morning it may be a good idea to revert back to clinic for further investigation which has sent a chill up my spine .We had a similar occurence with this pain at xmas though not just as bad and they did an MRI then and said all was ok it was nerve damage so I am holding this thought in mind and hope there is some kind of let up soon .We will be back at clinic soon anyway and I know the pain control keep them posted .

Well getting to bed early as once we hit midnight it is a busy night .

Bell .

PS .Chevy Chase ,that was a good one Paul had a wee titter at that .

Sorry things aren't looking up yet. At the moment i feel I have got a very naughty man who hasn't been very honest about how he has been feeling. Last night he began to have a really bad coughing fit during a blandish dinner and grabbed for the oral morph. Seems like he has been having quite a sore throat - left side which was not the main focus of past treatment for just over 2 weeks. That is as well as the swollen right submandibular. I am really miffed cos if he had been more honest I could have got him in to see oncologist and ENT people today. Now we will have to wait another week. Unfortunately he assumes (cos he hasn't read a thing) that if it comes back it will behave has his last cancer did. He has no idea it could be much more agressive.

I did have a look down his throat and could not see any big lumps, however there did look to be a bit of discolouration in the left tonsil area. Oh why didn't I change the appointment as I was going to do anyway. I really feel that 8 weeks imbetween check ups is too long at this stage in the game.

Thanks for listening
Cath

Hello Cathy ,I don't know if this will be of any help .Paul used to get a sore throat down one side only off and on, it was usually a normal sore throat infection and sometimes thrush onoccasionally just irritation from something he had eaten .The throat tissues are usually quite delicate for a good while post treatment .Try phoning docotors and get him to have a look ,could be he needs an anti biotic.

I am sitting here in tears by the phone waiting on pain control phoning me back had a horrific night worst one yet ,this can't go on like this he was so bad and I couldn't even get him out of bed to take him to hospital ,when i said i would phone an ambulance he just dissolved and pleaded with me to leave him alone in his bed.I am trying to phrase everything in my head to put everything accross to them.

Looks as if we are both back to problem solving for our loved ones .

Talk later Cathy, phone the doctors meantime and get him seen today may just need an anti biotic.

Bell x

My Dear Bell,

Thanks so much for your kind words, especially when you are so down. It did start with a cold and I am trying not to worry too much. I will try and suggest a GP appointment, but have a feeling Chaz will refuse! He gets so cross with me worrying and that tends to stop him telling me whats going which is not helpful!

I am so so sorry that you and Paul continue to suffer so. You are right you cannot go on like this and someone really needs to get his pain under control quickly just to give you both a breather. I will be thinking of you both today and deperately hope that we will be getting a happy cheerful post from you soon.

Take care of yourself you fabulous woman.

Cath

Hi Cathy ,hope u coaxed Chaz down GP .Pain control phoned me back early and came out for around 10am they are very kind and we would be lost without them .After discussion it has been decided to increase the Amitriptiline to 25 mgs at night along with his 4 hourly Gabapentin dosage and add in Oxynorm which we can top up through out the night in place of the dihydrocodeine.Probaly does not mean much to you but may be helpful in the future to someone else with this nerve problem .They will phone back in morning and see how it works out .If things do not improve they will take him into hospice for a few days and monitor him during night and try something else .

They have also contacted clinic and asked for them to review Paul to just check everything with his nasopharynx and glands etc , which should be next Wednesday.

Full of hope again for tonight so please keep your fingers crossed .

Hope Chaz is being a good boy and puts both you minds at ease with a wee visit to GP in meantime.

Catch up soon Cathy ,

Bell.

Hi Bell

Keeping my fingers & everything I can crossed for you tonight

Mum
xx

Hello Bell
I think that you must be waking to another day around about now. I hope your night was an improvement on the previous. You poor things. Poor Paul. He must dread the passing of daylight, knowing that he is in for pain and a rough night. You too. Why does pain and bad things generally, happen at night? It's weird because everything seems exagerated in the dark.
There is little more that I can do other then say once again that you're in our thoughts and we're sending you everything positive that we can in the hope that you are both soon free of all this bad stuff.
Love
Deborah

Hello Bell,

Sorry to read that you had another difficult night. Debs is dead right. Night times can be a bastard. I can't remember how many times I ended up calling our chemo ward helpline at night during Chaz's treatment thinking 'why is this happening now'? I must say the nurses there were angels and I don't know how we would have managed without them, they could always comfort and reaassure me that we weren't going too far with our never ending anti-emetic cocktail experiments!!

Well Chaz is still on the naughty stair and refusing to seek medical opinion until the check up next week. He can't see the point and I am not sure whether he believes that I am advising him because he might have an infection. At the moment he doesn't seem to see beyond has the cancer returned or not and I don't think he really wants to know as he seems to be of the opinion that if it did return, he wouldn't be interested in more treatment - althogh I am not sure what they would be able to offer him if it did.

On the positive side his throat seemed much better yesterday and we went out to a Japanese restaurant on the way to the theatre (again!) and he managed to wolf down his food fine. I don't know what set him off the other night. I continue to worry about the back pain he has been having for about 4 weeks, but he has suffered with lumbago on and off over the years and symptoms seem quite consistent, although it has been going on for longer than usual.

Ho hum. At least I have been quite busy with work things of late, but I am finding it difficult to carry on as usual and my current contract should involve a trip to Kenya in a few weeks. Usually I would be really excited, but at the moment I have all these questions and wonder whether I should be planning to go or not. I know one has to keep on trying to live one's normal life and not let this bastard disease stop one, but its easier said than done!

Must go.

Cath

At least a trip to Kenya will keep you home from the theatre for five minutes. Bloody hell, woman. Are you ever home??????
I know it's hard, Cathy but if there are no options for Chaz should his cancer return, and he is happy to enjoy some 'normal' til his appt next week. I say, let him enjoy!
Deborah

Well Cathy I agree with Trev go for it sometimes a little me time for both of you is good stuff.

Things here still on the downward slope new medications have been upped and not working and now everything going down is coming up.This happened last time he seems to have a intolerance which causes persitant vomitting .

Hospice pain control are doing everything they can but there are no beds at moment.So ..have set up a syringe driver with new concoction and can phone through the night for injection top ups to get through the weekend .Have also requested Paul sees clinic early next week for another check up so all we can do is keep fingers crossed and truck on .

The new drugs they want to try need to be done at hospice so will just need to bite the bullet for another few nights and hope for a bed next week .

Bell.

Dear Bell
My heart goes out to you both. This is an absolute nightmare you're living and now it's the weekend. That comes into the same category as the night/dark when you are having troubles ~ the world seems to all be somewhere else.
What can I say? Nothing that is going to change anything for you both, unfortunately.
You are one very brave woman, Bell and I take my hat off to you. Please give my love to Paul (the way he is feeling, it probably won't mean anything to him though, and rightly so) and to you also.
Words seem empty, you want and need something practical and positive to be DONE, not said.
I'm thinking of you Bell and wishing you both a turnaround in this horror you're living each day.
Love
Deborah