Hi ,having a coffee and going to phone for an update, girls still asleep so having a little catch up and have stopped trailing thorugh web pages for answers just need to go with the hospital .

Feel a bit like a duck presenting calm on the surface and my feet paddling like mad along with my stomach under the water .

Girls have been great with their reasoning and young vibrant faith in antibiotics and fluids but I am not feeling very confident at moment .

Paul is weak and tired and still the nausea and vomiting is continuing regardless of what they use when he tries a sip of water or a little ice cream, I have told them he has done this before because he can't tolerate the heavy meds and have asked them to reduce to see if there is an improvement and use an injection if the pain comes back but as usual week end and don't want to reduce till Monday I know where they are coming from but anxious for Paul to start feeling an improvement as I know that will make his low mood and feeling of impending doom lift .

Today will be 5th day of antibiotics so am feeling there should be a difference in his chest which is really alarming me .Chest x rays done Thursday and Friday they were not happy with so be redone on Monday .Liver blood tests looked a little better but will do ultrasound on Monday also.

Have asked what is going on with his chest as they said crepes on lower quarters so would like to know exactly if it is a pneumonia or fluid etc he is coughing up nothing no sputum and no blood.

Goodness I Can't believe how quickly this has all presented itself and need to get into gear and believe the next few days will show signs of change.It is strange the way I am reacting when I am getting updates I am listening intently but my ears seem to be listening as if I am on a phone and I am not sure whether i am interpreting accurately .

Well another day has begun and I cant wait to get back to hospital to be with him in the hope there is a wee smile and just a hint of that old look back in his eyes .

Love and best wishes to you all ,Trev, I do hope you are feeling more like your old self and things have settled with your tummy and kidnies .You in particular along with Ananth have given great strength to both of us and have proved with the right care and frame of mind things can improve. He is geting the best care and I just need to find the right words and actions to break through his depression.

Like you said Ananth, he would prefer to be home in his own bed but knows he needs hospital attention at moment .So great to see you back on the forum ,just like old times look forward to CNN you are becoming world famous!! ,I do hope you can bring head and neck cancers to the fore in some way. If anybody can it will be you .

Bell .

Hi Bell,,

We have been away to Wales for a few days to take Alex back and as the weather was lovely it turned into a nice productive break. (We have a house there and it needs lots doing to it. We finally started to get the wheels in motion which feels good.)

I have caught up with your posts and hope that you are finally getting results of tests etc. You must have really been on tenderhooks for the last week. How is Paul doing/ Have the anti-biotics kicked in yet? Is he feeling any better in himself.

Much love,
Cath
ps not off to Kenya until the end of May now so will be around annoying you all with posts for a while yet.

Dear Bell,
As I mentioned earlier - I have no idea where you women get your strength from. From what I think any man had he been faced with such heavy burdens would have just lost it. I truly like your positive attitude and that means you rub the ones you care for with the same. The vibes you are sending out to Paul are helping him. He is helping himself. All you have to do is keep your faith in noone but yourself and pass on the same to Paul.
I have seen Sonya at work on this score and I can say, without hesitation that it was her attitude and her strength that made me pull through. The point is she believed in herself and she believed in me. Its the same as in your case - as long as you fight along with Paul and keep letting him know you are there and there is no other option then life. It will make a world of difference.
I do hope you are getting some rest as well as it is vital that you are relaxed. If you start getting all worked up and begin to let the stress get to you - it will not be of any help. What I do is - I do not remember yesterday as today is here and yesterday will never return. All I can do is work for a better tomorrow and as long as you believe in it - so will Paul.And if you ask me how Paul? Its because of the love you'll share and are soulmates. One cannot be without the other.

Sonya too has begun reading all then posts and she too agrees with my statement. No jokes this time. Both Sonya and I want to see both Paul and you happy.

As I had said earlier - if there is anything I can do besides just think of both of you - and is withen my power, I will do it willingly. I am also glad I managed to get your mind out of things at least for some time with the most melodramatic post.

As I said I have a lot of free time on my hands and even if I work on a project etc. -it does not take up all my time. Thats when all these crazy notions come up. They are not meant to hurt anyone but just to bring a smile on ones face. I think one small smile is a great deal in these kind of times. Would you agree?

lots of love,
Ananth

Hi ,Paul has made good progress over the last couple of days, infection settled down and mouth is looking much better the cough is less nasty and more comfortable.He is now managing pureed foods and drinking better .He is managng to speak a little better now and they have got the constant nausea and pain under control now without him dopey and sleeping 24/7 but said because of infection and dehydation the medications would have been more concentrated.

Yesterday he was full of ready to get on his feet and push on and was more cooperative with Physio so feeling elated and shattered at same time .

Specialist had a good chat with us yesterday and now waiting on this MRI so he can recheck for spread or see if he can find area of Necrosis which could be reason for pain .If MRI shows nothing he is to have a PET scan .Evidently there is finally one at New Gartnavel in Glasgow but difficult to get a booking so he is on to that as well. He let me see through the camera yesterday and talked me through it was not what I expected at all .

Has explained that although camera is picking up nothing new there is so much dried gunk etc he needs to check underneath.Also explained if there is no spread and it is necrosis, area of bone necrosed may not be ideal for safe removal so that would mean controlling things with the pain control and managing it .

Paul took this on board an said he could cope with that and was just so happy to feel alive and much better enjoying every wee bowl of pureed food.His voice is still very weak a bit like the godfather but again the left side of voice box taken a dunt with infection etc this may come back given time .

So all in all things a lot better and I have him back mentally and we now are waiting for scans .If Mri gets done on Monday will take it from there but if not he is now ready for coming home next week and they have said pain control are going to try and wean him off syringe driver and hopefuly covert to tablet form which will make it easier to get him on his feet ,dressed and concentrate on his mobility.

What a month this has been we both thought, well you know how things were ,so just grateful things are looking more positive and managable.

Thank you for your continued support and to lizz and Charly ,Debs and Trev and many more who have given me the courage to keep strong and pass it on to Paul.

Ananth ,sorry for being a bit shirty about your poll I know what you were trying to do ,was just agitated and thinking about how I was feeling and it becomes totally absorbing that everything else is nonsense and surlpus to requirements. So!!!!....,lol .Look forward to seeing your poll in full .

Love to all Bell .x

Dear Bell,

I am so glad to hear that Paul is feeling a bit better and getting ready to come home. You both have had a dreadful month lets hope May brings much improvement.

Love to you both.

Cathy

Bell

Lets hope this is the start of an upward trend and things will carry on improving. As Cathy says you have both had such an awful time and you deserve a more positive period.

Do look after yourself. My best wishes to you both.

Love
Gwyn

Dear Bell,
You dont have to feel about anything. I understand how tough it is for you and anything else other then Paul is an irritant. The entire thing just does not take its toll on one person but its one that affects a lot of people and the one most affected is the one who is closest.

I honestly hope things start getting better and your life is back on track. My offer is always open.
Lots of love,
Ananth

Dear Bell
This is the most comforting news I've heard for some time. Great stuff. Love to both you and Paul.
Onwards and upwards
Deborah (& Trevor)
x

am thinking of you both and sending love and positive thoughts

What a relief he is on the up, things can only get better. Love to you both.

dear bell
i am so pleased that things have finally got better for paul,you must be worn out with it all.i was where paul was with the sickness and vomiting for about 5 weeks and had to stay in hospital too so i can imagine that paul will be looking forward to being home in his own bed.happy to hear his cough and bad chest are improving,thinking of you both,much love shirl xxx

Hi Bell,
I'm so pleased there has been an improvement for Paul - keep it up!
Much love
Margaret

Great news


xxx

Hello and thank you all for your kind wishes and support ,just thought I would update Paul's progress.Yesterday they did a CT scan instead of MRI as Specialist thought it would show bone necrosis better than MRI unsure yet if this is because a an MRI slot was not available but will ask today .Last night they removed syringe driver to convert him back to tablet form think they were reluctant to do this so early but Paul so desperate to feel less constricted and I am on tender hooks this morning hoping the nausea and pain has not restarted but this will become clearer over the next day or so.

Today may now give some answers as to what the problem is and if it is bone necrosis hoping there is a solution .Still a little concerned about this strange cough which is a lot better but still there especially on eating and drinking .He is now thinking about food but making do with the pureed and taking as much as he can ,also back to downing the calshakes to try and get his strength back so I am really proud of him ,his eyes are back to being focused and his wee glint is back, so the fight is back on major style .

Butterflies back this morning in hope of positive news later today .Thinking of you Trev and Deb's wondering if you got a top up transfusion to give you a boost to let you home earlier.

Love Bell.

fingers crossed you get some answers today Bell am thinking of you both x