Hi Bell

Finger and toe crossed for Paul, I hope that the doc's come up a good plan.

Regards

Tony and kathy

Any answers yet?

I know it's difficult, dear Bell, but be sure to take care of yourself.

Fingers, toes and heart crossed for you.

Mimi

On Monday they did CT scan on head and neck to check for any new growth or necrosis in bone which could be causing Paul's recent deteriotation, was originally meant to be an MRI but felt CT would be better for tissue and bone evidently .

Have been holding my breath since Tuesday but yesterday they said now he was managing pureed foods and converted from syringe driver back to tablet form successfully he could come home today .Results will take another 5 day's!! which I can't understand as he in hospital and really thought it may have been quicker but not sure why the delay when his specialist is tring to get to the bottom of things quickly .

His specialist said he will phone us as soon as he has answers and we will discuss the results then and take it from there.Nurse from pallitaive care will keep a daily eye on things so at least I don't feel as if we have been sent home with no answers and no back up.

Excited this morning and a little nervous at bringing him home in case things slip back .Bought a new blender on way home from hospital to get back into preparing the pureed foods and have put in prescriptions for his beloved Calshakes but was given a generous bag to take take home yesterday.He is already homing in on all the magazine photos of food and would love to tuck in but have been told this has not to be tried until they give the ok .He is mentally back on form and accepting the new problems well in the hope they are temporary his left side of face especially cheek and mouth seem to be frozen and is causing some problems .Eating and drinking sets of a strange reaction so has to be tackled slowly his voice is still weak as left side of voice box, appears to be damaged now.This has come on so quickly and all after this weird infection still not quite got to grips how quickly this happened and all after being treated for suspected nerve pain which began slowly from xmas followed by a haemorrage at new year .

Paul like most men lives to eat so I need to slop along with him or secretly have a munch in kitchen as he looks at my plate with such longing it makes me feel guilty .

Things on the forum very low at moment and I know it is affecting everybody guess we just need to carry on doing what we do best and that is to be there in our posts especially for Trevor and Deb's.

Bell .

Hi Bell,
Thinking of you and hope the results of the tests are good.
I know this is easier said than done and it has taken me 2 years to eat my meals in front of Neil - and I still feel guilty - but you really need your strength so please try and eat well!
Lots of love
Margaret

Hope the results are good, how well I remember liquidising Christmas dinner for Paul and putting it in the peg! ( and nearly blocking it)

Hey Bell
what spectacular news.I am sorry i have fallen behind on the pm's but as you said the news from Oz is a bit overwhelming.I feel bad because i can't even muster the enthusiasm to welcome the new folk,and thats downright out of order ,so i am sitting here at stupid o'clock trying to catch up.Must say i amd very surprised you have to wait five days,scans are readable as they are being done,so i guess they are waitiing for the radiology consultant to report on them.

I never ate in front of rob as you say it seems too unkind,but his worst problem was salivating(when he had any saliva lol)at the adverts on tv.

Love ,Hugs and well done you two

liz

Hello Lizz was so pleased to see your post having a cuppa before I start with Paul.I am the same ,feeling low about Trev and also things here ,not responded to new folks yet either .

Finally got Paul home at 6 pm last night but he made straight for bed feeling weak and drained his mood has reverted back to quiet and unresponsive and would not follow med regime even though I talked him over it and typed it out and colour coded it so was a bit of niggle to say the least to get them all down so meant last meds were 2.30am instead of 12pm

Think he is wary and felt safe in hospital but I am going to have a bother getting him out from the duvet and on his feet today , but I need to do this some how.

Feel he thinks phone call will come and answer will be there is nothing else can be done so I understand this but just need to keep calm and try and coax him out of bedroom .Having a dose of the jitters here waiting to go in a wake him to start the day ,fingers crossed for a better mood this morning and the will to get back up on his feet.

I am wondering whether specialist is maybe conferring with someone over scan results with a view to what can be done if it is necrosis as that would involve a neurologist if an opertion should be possible.God my mind is all over the place .

Keep thinking about Trev and Deb's also they must be going through hell as we speak .
Hope you have a nice day planned,weather here is dire back to cold and wetwhich is rubbish as some warmth and sun might have enticed him for a wee totter in garden .

Love Bell.

Hi Bell,

Well glad to hear you have Paul home, but understand how difficult it must be and that you must be feeling very anxious about scans. I know radiologists are in very short supply in the service so if one is away on hols or ill, I can imagine it could create havoc. I wonder if all radiologists are trained to interpret a scan for a patient that has had Paul's treatment regime or whether there would be a need for some sort of specialisation or second opinion anyway? Also can't help wondering whether hospital staff have been involved in an emergence preparedness drills for a possible swine flu outbreak this week?? Fortunately that does not as if it is going to be as serious as it may have been.

Do try not to worry too much and I hope you are more successful at coaxing Paul out than I have been at coping with a depressed Chaz this week. He seems to be a bit better as a result of some social engagement with some of my friends the last two nights, but again dropped a return of a sore throat into dinner conversation last night. I haven't slept much as a result, but then know that I am going through nothing compared to what you and Debs have been dealing with of late. The news from down under is very upsetting isn't it. I really miss Trev's unique posts.

Here's wishing you a better bank holiday than you are expecting. I know it is going to be difficult but hope that things can't be as bad as they were a few weeks ago when Paul was si ill and you were waiting for the bed.

Big hugs,

Cathy

Well hi everyone ,having my wee cuppa getting ready for the day ahead as I wake Paul at half past seven .Yesterday went better than I expected he managed his shower and got him dressed and into his chair with papers managed whole day up with a small amble round garden and then back to bed at tea time .Medications staying down and eating the pureed foods ok still having a little gagging when swallowing so hoping this not going to be permamnent problem now and worsen .It would be such a shame to have to go back to peggy after eating so well for the last couple of years .As you said Jennifer (lovely to hear from you I am going to read your story later ,so sorry to hear about your Paul but your input is so valuable) they can be a bit tempramental when trying to get some home cooked stuff in them had a couple of plumbing problems there also and a nurse told me to flush through with some coca cola never forgotten that tip .

There is a possibility the nerve damage which may have arisen on his face which is still numb and frozen but pain free due to medication thank goodness is also causing problems to left side on vocal chords and causing some swallowing problems can't remember all the explanation for this yet as things still being diagnosed .Secretary phoned yesterday and to take Paul back in on Tuesday for results so not sure what to expect .

Have a feeling that theese new problems are from late RT damage as I was told this can happen a number of years down the line due to necrosis and may have nothing to do with second IMRT treatment last May. Not sure whether there is going to be anything they can do about it as it has been pointed out the area in question may not be operable for salvage surgery.Need to stop being so negative .

Anyway he was trying so hard yesterday to get back on his feet and in a positive frame of mind so I can't ask for anything more at present .His skin has become so dry with all this set back and even after shower and clothes on his navy socks looked like a snow shower after a few minutes so have got my good moisturizer out and getting him oiled up a bit ,really you would think he had been given another chemo session .

He is even talking about his hair now although he does not have a great deal does need a wee zip round as the top looks like a wee hedgehog so wants a trim today ,last time I used the trmmer thing i ended up giving him a bald stripe so will read instructions more carefully today .

Love Bell

Hi Bell

Glad that things were a bit better yesterday for you both.

Good luck with the hair trimmer I done that years ago to my husband just before he was going out to presentation evening for his local football club!! A lovely bald stripe right down the back of his head
One was not imused
Hope things continue to get better each day for you both

Lots of love to you both
Mum
xxx

Oh, about time we had a bit better news. Lets hope it keeps up. Are your daughters still with? it must be difficult but you need to take care of yourself too to keep your strength up. Look forward to reading your next post telling us of more improvement!

Hi folks ,trucking on here and he is trying so hard to get up on his feet and pottering around so getting the squidgy foods down and experimenting with meals ,today I made haggis neeps and tatties ,then liquidized partially and it was really quite ok ,I think you may be turning your noses up but Paul was quite impressed and I ate it also .This is one of his favourite dishes did it in little batches so it looked pretty and not all mixed in together so was quite presentable ,lol.

Also did the hair strimming not perfect but looks ok .Last time Mum I had to dab a little mascara up back as it looked so awful and so pleased to hear I am not the only one who has had an accident with this ,probably why Paul goes to have it down at hairdressers now ,but this time was needs must .

So pleased to have him home and just putting Tuesday out our mind .Weather here has been so lovely and managed another walk in garden today , tomorrow if weather holds will do some much needed preparation for summer planting and maybe get Paul out in a chair for a while.

Hope you are all managing to have a good bank holiday weekend without usual rain ,in the UK anyway. I know other members will be enjoying the sunshine .

Love Bell .

Hi Bell,

So pleased to hear that you had a reasonable day yesterday and hope you and Paul thoroughly enjoy today and tomorrow.

I am staying with a lovely girlie friend in Cardiff when Chaz is in Wales. It was a good decision. We sat and watched Mama Mia with her 8 year old daughter last night and hence I was woken up at 7.30 this am by the loud strains of ABBA and an excited 8 year old saying " I am just going to turn it up!"

We are off to the beach for a birthday party later this pm which should be fun.

Keeping fingers and toes crossed for you and Paul.

Much love

Cath

Hi Cathy ,thanks for you update ,girlie time is a wonderful thing ,I remember my 3 took me to see this when it came out up in town and we roared with laughter as all the women in the cinema would start to join in the songs and really gave it there all ,only in a Glasgow cinema methinks ,lol.

Hope your weather stayed good for the beach party it poured here after having such a good couple of warm day's previosly had even looked out some summer T shirts .

Things here progressing slowly, so lovely to have him back home but feel things have reverted back to initial treatment days a few years back .Managing to walk a little further now but still shakey and unbalanced and morphine not helping but at least he is pain free and comfortable .

Eating still difficult as his swallow still not great which is driving him mad as he loves his food .He is concerned this is not going to return and get worse and will have to go back to peg feeding but tomorrow we will get results of scan and better picture of what is and has been occuring.

Hope Chaz is keeping well and his throat feeling a bit better I am sure this will settle in time .

Love Bell .

good luck for tomorrow, hope it goes well