Hello everyone especially Mimi, got ur private message ,lol very droll indeed Mrs.Have not been on for a long time because I could not find my way back in to catch up with everyone as my computer has been away and we have been having a bit of a time of it .

Paul has coped well the second battle of RT but this time the legacy he has been left with is a bad left ear where the exit from RT has left him very deaf and is having constant ear infections .There is not a lot they can do as the ear seems to have collapsed inside so the usual shapes and structures have become soft and spongy .It is still being kept an eye on and hopefully given time there may be some improvement .His jaw is a little stiff and sore but again he is coping with this .

Unlike last time he has not had the same problems with fatigue and mouth problems which is good as last time he lost all saliva production which has never returned and couldn't eat at all .So all in all it could have been a lot worse ,at least his other ear has good hearing .Unfotunately Paul's mum is undergoing treatment for Bowel cancer so it has been a busy time .

Have spent today trying to catch up with everyones posts old and new .Think it will take a few more weeks to become familiar with all the new postings .

I know you will be thinking Mimi about where we are at now regards this second RT treatment on recurrent cells but as far as we are aware given time the only way to find out if it has worked is for Paul to have an anaesthetic and for them to do another biopsy.At this present time Paul does not want to think about this and wants to wait until he feels he is back on his feet .I suppose we would never have known about this if he had not had the operation to remove the adhesions in the Nasopharynx and they did the biopsy .So we are trying to look at this as it being caught before it became apparent at the clinic after it had grown and could be seen with the camera scope.

Hello to all the new comers on the forum, we wish you well in your progress with treatment .

Paul and Bell .

Hello Bell
I didn't realise you two were back on the band wagon. I'm so sorry to hear that and also to learn that Paul's having a tough time of it (which means you are too!).
Apart from the bad news, it's great to hear from you ~ it's been a long time.
Our best wishes from Down Under
Love
Deborah

Hello Deborah and of course Trev ,goodness what a nightmare you have been having also ,been trying to catch up with all the postings and now pleased to read Trev is getting through his treatment with his amazing sense of humour .You have been amazing Deborah and together you make an excellent team ,well done .

The two of you must be shattered but hope like us more on an even keel now .Paul also had awful constipation first time round but was given prescription suppositories as a course which was a bit of a polava and fell to me to administer as Paul at that time could not even lift his head off the bed at that point but we had a wee joke about it, Paul's comments i could not possibly repeat!! ,lol.

Once he was able to eat again which was a good time later around 6 months he had peg tube removed, I used to give him prune juice in custard which worked a treat .

You two have been doing so well and I hope Trevors treatment finishes without any more difficult problems.Our oncologist keeps talking about the "little legacies "that treatment leaves behind and is a phrase I am now starting to flinch at and now fire back at him ,well what is there to help resolve this and the answer is always we will need to wait and see , AGH !.

Paul has fared better this time with new RT but we had no chemo this time which was cisplatin and 5 FU so this has helped but I guess everyone reacts differently.

Thinking of you both .

Love Paul and Bell .

Hi Bell,
glad to read Paul isn't having as rough a time of it with his second battle.
It must be difficult living with it at the back of your mind everyday. Not knowing. Though i suppose we all do in some respect.
How is your mum-in-law doing? How are your family coping?
& where would we be without our family, friends, and the understanding group we have here?
My love to you both,
Michelle

Hi Chelle great to hear from you ,just getting back into the forum now been such a hectic time with our daughters wedding then straight down to London for 7 weeks to start treatment again .Pauls mum has had her operation and seems to be doing well and they are happy with operatin .They wanted to do a belts and braces with Chemotherapy but she has declined saying she is 84 and wants to have some time now feeling well and has refused .

Paul is doing well but irritated with ear problem and back to copious mucous production from nose at night time, which is drowning him .
They have no explanation as such and feel some nerves in area have been upset from RT which is causing extra production .They have said when we go back next month there is a new spray they may have him use at night to try and stop this so will need to wait and see .

London seemed confident this second treatment would hopefully resolve the problem but also said that in Hong kong they have also used this this new type RT for a 3rd treatment !!!.

Dont think Paul could face it and we are praying very hard that all has been well and truly burnt out .We are so glad it is all done and back home in our own house and surroundings .

Hope things are going well at the Salon and you have a full client list of posh pooches now .

Love Bell and Paul x

Hi Bell

it doesn't seem five minutes ago since you were so worried that Paul wouldn't make that wedding,and look at you now!!! a bit battle weary,but fighting another day.

god bless you both

love Liz

Hi lizz ,great to hear from you, as you say look how far we have come and Paul got through really well including the wedding .

I think this forum proves it is a haven of hope and lets other people share the bad times and sad times together where we are all in the same place and can pull together for help even in times where we reach the darkest places .

Hope you are well Lizz .

Love Bell and Paul x

Am so glad to see you posting again! Every time I signed on I hoped to see a post from you but didn't want to be a pest. Looks like you've both had your hands full.

Never thought of an ear as an exit point, but it certainly makes sense. I hope that the infection is cured soon and that although he may have lost hearing, that there isn't any pain. I understand why Paul doesn't want to think about another biopsy - you get to that point where you say, "No more," take a break, and then pull together for whatever is next.

Before writing I looked up Quarrier's and see that there are a bunch of B&Bs there with prices way below the rest of GB (£55 per night). Am thinking about visiting a former coworker in Manchester next year (that's if there is still a US and we haven't been bought by China, my bank hasn't closed, and my 250,000 frequent flier miles are still good), and maybe take a train up to Bridge of Weir. Maybe I can meet you somewhere or other and we can compare stories. Beware - if circumstances are bad, I may move in with you; no warning, of course. No haggis, please!

Please take care and continue to update us periodically. We've missed you.

Mimi

Hi Mimi ,lovely to hear from you ,I should have sent u a pesonal message but did repy as you instructed on General chat ,lol.

Would be great to meet up with you next year when you pay a visit .I see you have a wee thingy about revisiting Bridge Of Weir.As I mentioned we stay in Turnberry on the Ayrshire coast but it only takes me an hour to drive up to Glasgow or bridge of Weir so would be great .Why dont you have a look at Glasgow ,ther are some great budget hotels there and lots to see and do if you are of a mind to do some museums or galleries etc and also near Airport for way home ,just a thought.

Pauls ear exit is because his cancer is naso pharyngeal and they were targeting an area underneath the nasopharynx so very awkward to give RT too and also miss important organs like optic nerve and brain stem also the aeotic artery so quite difficult .His wee ear is totally in melt down hence the reason of recurrent infections .

How are you doing Mimi? you sound in good health and are not mentioning any problems since your treatmentwould love tohear an update about you .

Hope we can have the opportunity to meet up and I think I may need to take you for a haggis experience ,u will love it !!!! lol.Take the Train to Glasgow Central would be better fun .

Love Bell and Paul.

Hi Bell

So glad to hear things are going well with Paul. As mimi said it's lovely to see your posts on here again. Stay positive Bell will be keeping you and Paul in my thoughts. Sending love and a cyber hug on the fast train to Scotland

Mum
xxx

Hi mum, thank you for your kind wishes and cyber hugs ,getting back onto the forum now and catching up with everyone .
Hope u r well.

Bell and Paul xx