HI! Bell,
well here I am again with my thirchy (twitchy)fingers so will probably be switching to my auto pilot DEB
....I'm so pleased to hear that some of the pain management is coming under control for Paul. I don't seem to have as much pain as I did before except for the kidney area. I haven't resorted to taking Panadol yet, but there are moments when I feel I should. My stomach is swollen and I don't know if it means my system is backed up (edited here, you can use your imaginations!) or it is just part of the kidney/cancer drama. It would be 8 or 9 years since I had a kidney attack and would hate to get back into the trouble I used to have. I know this is not part of the cancer but to me, the illness is all just one thing ~ to drag me further down.
I seem to be developing 'bruises' ~ old people's marks, on my arms and wrists without noticing I have knocked or bumped myself.
My gorgeous Deb fusses over me which is lovely because she sure is one fantastic bird (no editing here!).
Tomorrow I am seeing my GP and will probably get some of my questions answered. First thing in the morning I'm seeing the optician to try to get my eyes sorted out. They seem to be going from bad to worse and reading is a real struggle now, Deb is reading to me a lot. I think that's also why I am having such difficulty posting. My fingers just don't seem to line up with the keys.
Love to you, best wishes for Paul
Trev

Hello Trev ,you are a wee treasure for your kind thoughts .I can imagine very well if you are feeling bloated ,not comfy but just try to keep on top of it and grill the doctor .Kidneys seem to be very delicate when they are out of sorts so I can understand you don't want them playing up, any added problems as you say just pull you down even further.

I do hope the Opticians can imrove your sight ,Paul had to get new glasses and they have certainly helped Trev. Maybe ask them if they even have any gizzmos for putting over keyboard like on a stand where u can type underneath and see they keyboard clearer if that makes any sense .My father used to have a square flat see through panel that magnifyed newspapers, was thinking something like that attached to some pencil like legs and glue them on at sides like a table then place it over keyboard and you can type underneath. (U r probably thinking I have lost the plot )

Well time for me to make Paul drink some fluids and try and eat something squishy .Hope you are still managing to tuck into something beefy Trev and ur tummy settled a bit .

Talk later ,

Love Bell x

Paul admitted yesterday after a bit of a fuss .He has been sleeping 24/7 on pain medication but not keeping much of the way of fluids down last couple of days and virtually no urine output.Couldn't get him out of bed at all and his mouth is badly infected ,also throat not great either and he couldnt cough or bring up the usual gunk etc as is normal .

Once we got him admitted our specialist came in to see him and was not pleased he is on oxygen ,fluids and antibiotics.Things in a mess with too many things going on so first is getting him hydrated and oxygen levels up plus antibiotics which they set up straight away .He has said they need to get him stabilized and then x rays of his lungs etc need to be done and they are going to dicuss his pain meds also could be they have been too drying and caused the mouth to become infected which has spread to throat and now possibly lungs and why kidnies have dried out also .

I feel the pain control worked but rendering him sleeping 24/7 with his dry mouth and no appetite etc has not helped .He has lost a stone in this 3 weeks .

Quite frankly I dont know where he would have been if I had not lost it yesterday morning and said No don't come out for a chat and change his meds just get him in .First round of calls was there was no blasted beds in the ENT ward so then phoned our specialists secretary and god bless him he phoned me at house and between him and hospice nurse we got him in .He has a wee quiet room and I felt yesterday everyone moved like lightening and got things moving quickly.

It was a bad night for him and without the vigil of the staff there I dread to think how things would have been if he had stayed here with me .

Will need to take each day at a time now and trust that they can bring him round .Specialist has said he now wants to do some further investigation but we will discuss this once he is stabilized .

Last night after some difficulty he produced a blood clot from throat which may have been reducing his oxygen levels but sister said he was more comforatble after that and his voice was more audible.

Bell

My dear Bell,

My goodness it sounds as if you and Paul have been through absolute hell in the last few days. I am so glad to learn that Paul has at last been admitted but horrified that it took so long for them to take him in. You poor thing this must have all been a terrible strain for you and I hope that you are able to get a little rest now that you know he is being cared for by the medics.

I will be keeping everything crossed for you and hope that they manage to stabilise him quickly and do all the necessary tests as soon as possible.

Take care you wonderful woman,

Big hugs,

Cathy

hi bell
thank goodness they have admitted him to hospital and now they can rehydrate him which should make him feel better.the can also monitor his pain better and give him the right dosage to keep him out of pain and not make him sleep so much.i experienced the constant sleeping when i was put on haloperidol for sickness i just could not wake up.some of the medication can be so drying and when you have little or no saliva it makes you feel 10 times worse.you must be worn out bell with the constant worry of it all and i hope you manage to get some rest in between hospital visiting.paul will also be glad that someone else is caring for him because even though we might be out of it due to pain. illnesses and meds we are still aware of how taxing it all is on the carer and that makes us worry too.take care bell and my best wishes go to paul.i really hope they can sort him out,it just makes you cross that it went on for so long but at least they are doing something now.love shirl xxx

Hello Dear Bell
What a relief that Paul is in hospital at last. I am so relieved for you both. I hope you can take advantage of some 'free' time and do something for yourself. I know that's not easy but it is important.
Trevor has been in hospital again and I thought Wow ~ some time to myself (knowing he would get visitors) What will I do? I couldn't think of a thing! Went to the local shops where I lasted about 10 minutes. I came home and went to bed and had a very much needed sleep!!!
I have everything crossed that you are soon sorted and on top of things.
Across the miles
Love
Deborah (and Trevor)

Hello Bell glad to hear Paul is in safe hands and hopefully you may get some relief knowing he is in the best care . you must try and get some rest i know how difficult it can be and you need to look after yourself to keep strong for Paul . sending love x

Just home from hospital ,was hoping to see an improvement but not yet ,still on oxygen antibiotics, fluids and everything else they can pump in .They are a concerned and runnning everything from chest x rays, ECG, to bladder ultrasounds and tomorrow a liver ultrasound .Specialist refrained from scoping nose and throat today as his mouth and throat in an awful mess so wants to wait till he is a little more stable .His chest is not so great at moment but hoping it is an infection and wil clear will know better tomorrow.

They are all doing their best from pain control to nursing ,currently trying to reform his mouth care with different solutions and medications so maybe tomorrow there will be an improvement .

Know he is getting the best attention just feels better to write it down .

Bell.

Hi! Bell & Paul,
sorry to hear things are not going to plan and that Paul is having to venture into Hopsital, I would like to think that they would have the pain control under control by now or hope so.
I don't know what to say right now, just wish the best for you both.
Hoping to hear some better news from you soon and that the pain in soon under control.
Thinking of you
Trev

Hi Bell,

Wondering how you and Paul are doing today and hope that there is news of some improvement.

Cath
xx

Hello to both of you ,think we are both having a down turn at present .Paul still not very great, they are trying to stabilize him still ! so still on Oxygen antibiotics 3rd kind ,fluids and syringe driver .

His pain in face and head under control but his chest is really bad and so is his mouth and throat so trying to get this cleared up .Chest and liver x rays and ultrasounds to be redone .So will need to wait till next week now for results possibly.

Specialist had a chat with us today.Said there are a lot of things going on and they have to deal with everything individually to resolve things.Also said they have had discussions and there may be a possibility the initial pain been buiding up from xmas could be the result of necrosed tissue and bone from irraditated site that has not come away and infected .Meantime he has to recheck his lungs and liver funtions which are not so good at present ,once this is sorted and infection in chest mouth and throat starts to clear up please god, he will go in and investigate Nasopharynx area and try and see if infection has started from there .All a bit of a mess at moment so praying for no spread to lungs and liver and hope he can turn this around .

I do hope Trev picks up over the weekend Deborah,Hernia, good god I can't believe it ,it never rains but it pours ,as they say here . Please tell him we are thinking of him and send our love .

Love Bell . x

Dear Bell,

I am so, so sorry to hear that Paul is still so unwell. And to be honest I am absolutely furious that things had to get this bad before you got the attention that he is now getting. I know there is no point, and we must only look forward, but GRRRRRR I think you have been going through hell for too long ......I really can't begin to imagine how you feel.

Well on a more positive note, it does sound as if he is now getting the full works and that they are going to get to the bottom of everything. I know you must be very worried about possible spread, and its awful that are going to have to wait until after the weekend, but it does sound as if could just be a very bad infection.

I hope that you have a chance to spend some time with your wonderful friends and or family imbeteen visiting Paul over the weekend and that you get lots of support and strength from them. I will continue to hope that antibiotics start to kick in really soon and that you get to see a stronger and more cheerful Paul before long.

Do take care,

Much love,

Cathy

Hello Cathy ,Paul still not out of the woods yet and they are throwing everything at it to get things resolved .Need to get all results in to put the jigsaw together .He has had good attention but the problem is they are not sure exactly what has been going on .

Although he was being treated for neuropathic pain from xmas which had gotten unbearable and they did scans in February which were clear there is now a possibility it may be necrosed RT infection which has not been spotted and cleared away by itself and maybe stuck and been slowly infecting, all this is just discussion and untill all avenues have been rechecked for spread, and his mouth,throat and chest under control they will not scope as he also getting some rather nasty bleeds from theese areas at moment .Do u remember we had the emergency trip between Xmas and New Year it was a blodd vessel that had popped again from RT but nothing else was evident to suggest an inner infection at that point .

Specialist is being informative and honest and said it is all new ground with the second RT and things will take time to be assessed .At least I know he is getting the best attention and if they can get his chest cleared soon it would make me happier his cough is terrible and he can hardly speak never mind his poor mouth and throat but looked cleaner and less painful yesterday so I can see a difference with anti biotics .Still alarmed at need for oxygen and also the fact his liver is causing concern .

Sitting tight for results and would just settle at moment to see him sitting up and talking.

Maybe today I will get a surprise .My daughters are here which is lovely ,so going to get their breakfast started as I can't sit down these days and we will make tracks mid morning to hospital.

Hope Chaz is well, I thought you were away Cathy when do you go ?

Love to you both Bell .

Hi Bell
What a rough time you're having of it, can't imagine how awful you must be feeling seeing Paul suffer as he is.
In reading your post, as dreadful as it all sounds, there seems to me to be an underlying calm so I hope that I'm picking up on things and it isn't just wishful thinking. As you say ~ if they can just get on top of one thing, then others may just fall into place. I hope with all my hopeability that's the case, Bell.
SO pleased you have your daughters to keep you company and give you some support ~ I know it's priceless.
Please take care, Bell and know that we are thinking of you struggling each day. Give Paul a hug and wish him well from us all the way down here. We're rooting for him and look forward to him being able to interact with you all again.
Lots of love
Deborah and Trevor
x
PS I like the fact that your doctor seems to be very frank with you. He won't mess you around which is very reassuring.

Dearest Bell,
This is my first post after ages and I am afraid I dont have all the details regarding Paul - but will read all the posts. From what little I have read - you are going through a torrid time.

I have no idea where you women get so much strength from to manage during such a crisis situation - hats off to you. I do hope, all sadi and done, Paul is now comfortable and is happy with the treatment he is recieving.

If you feel there is anything I can do - besides thinking of Paul and you beside all the others. It will be a pleasure to do so. As Trev mentioned we are all rooting for him and I am sure he will stand up again and stronger then before. He is not a looser under any circumstances and am sure he can still kick butt. However, with you by his side - he is already ahead in the standing up department and am sure with a little more push from your end will go a long way.

Do wish Paul a speedy recovery and get home as soon as possible. I know at the hospital - you would get some rest for your self - however, am not too sure if he wants to remain there. Do write.

With loads of love to both Paul and you,
Ananth