Gawd bless the both of you Bell. You have tickled my funny bone with the ambulance story. When they get round to making the film of this message board, that'll be one of the highlights!

Mouth cancer, the movie! I can see it now. To be honest, I don't think people who haven't gone through it would believe half of it. I wonder if we could get Spielberg on board for it?? Oh my surreal mind...it's gonna get me in so much trouble!

I would love to join you in a Baileys if it weren't for the fact that alcohol tastes really yuk. Guinness or Murphy's is ok so I may have a tin of that at midnight, if I can stay awake.

The other problem with Baileys is that when I open a bottle I have no willpower and end up knocking back the lot! I end up a dribbling mess and English becomes a foreign language. What a state to get into!

Happy 2009 peeps.

Ray

Hey you guys.
Just updated myself with brave 'ol Trevs journey.
You're quite something! & its good to
see you've kept hold of your spirit! I'm certain its not all as light hearted as you make it seem but keeping your positivity and telling it like it is will help many more people in similar situations for years to come.
I just wanted to wish you all the best for 2009. Keep fighting the good fight.
You're simply an inspiration.
My love to you all
Michelle x

How's the Baileys hangover Bell?

I, as everyone, feel for you as you go through this. I can't remember anymore when the treatments and meds started wiping me out but it was quite early in my treatments I believe. For most of last year I felt knocked out, sleeping a lot and tired when I was not too sick or throwing up but in a way it helped me get through it. So perhaps it's a blessing to sleep through some of the tortures of the treatment. We're all rooting for you and with you in our hearts. I'll wish you well in my prayers and thoughts. Take care ang hang tight.

Hello Birthday Boy ,I am Just fine was a good girl and just contained myself to two!! lol, was a bit worried in case we maybe had another ambulance race in the middle of the night and in that case we would both have been in need of the cardboard bowls .

Paul more settled and new medications appear to be helping .Pleased to hear you are feeling better also and you finally have your appoitment in Ray.Make sure you go with a complete list of how you are really feeling sometimes you come away and then remember things you wish you had asked .

Getting to grips with your S of H Ray, so try and be a good boy with the doctors and behave yourself !! lol .keep us in the loop.

Happy New Year to you .

Bell and Paul x

Seasons greetings to you all. So glad to hear that Paul is feeling better and that Trev and Debs had a nice break by the water. I think Debs and Bell should have been honoured in the New Years'honours list. You are both so inspirational...

Happy Birthday again Ray. So glad to have eventually got a follow up appointment.
We have just been to the GP who seems to think Chaz's new lumps and bumps are just dermatalogical and ulcers par for the dry mouth so I will kep my mouth shut and fingers crossed. At least they are going to have a good look at his blood.

Best
Cath

Hi Cathy ,this is all part of the journey unfortunately especially the mouth ulcers it is a trying time and a bit of a lucky bag as to when side effects from RT appear .Always such a worry but there is no real rule of thumb as to what each person will experience .

Paul had bad ulceration first time round which would clear up then come back also thrush episodes and bad times with strigy mucous .This time round we are 6 months post RT and he is now in a low with terrile eye ,face and neck pain which has us very concerned and waiting for scans but clinic are trying to calm things by saying it is trigeminal and sorting out medicatations they say it may be short term but we will need to wait and see .Also he had a bad haemorrage and again Rt damage and vessels in nose tender .So it is difficult to know what to expect I guess everyone is different and some people have less problems than others .

I also think the treatments given now are more extreme and they are not sure what to expect in most patients during recovery which does not make it easy .They also do not tell you the worst sonario of side effects to expect either so you are not prepared or fore warned and that is possibly because it may deter people from treatment.

At least on the forum we can discuss and chat about side effects and usually someone else has been through them and this gives much needed reassurance .

Wishing you both a better year ,

Bell and Paul.x

Dear Bell,

You and Paul really have been through so much. Its marvellous that you can still find the time and energy to be of so much support to those of us who are relative newbies. I really should be thankful cos all in all Chaz has been doing really well. However he had a gout attack over a week ago and then several skin erruptions on his neck and bum as well as his ulcers, which probably should not worry me, but unfortunately they do.

Despite these irritations, he has been eating heartily over Christmas and actually seems to have enjoyed his last three meals. He is moaning at the moment as he seems to have put on half a stone since treatment ended!

BTW Trev and Debs, how is the filming going? Did you capture the brolly incident on film? I got a camcorder in my Xmas stocking so have been busy taking shots of everyday life in the lovehouse at Brighton made all the better due to Chaz's son Alex being here. We watched them the other night and they were hilarious largely due to my complete incompetence as a movie maker. Nevertheless, I have lots of lovely scenes of father and son looking at brussel sprouts under microscopes, making models, dancing and both playing on their respective electronic drumkits together which should make a fabulous momento for Alex one day.

Best wishes to you all,

Cath

Many thanks for the birthday greetings Cathy and Bell.

I'm afraid it's far too late in the day for me to start behaving myself!!

Ray

Hi Michelle
How lovely to hear from you. Happy New Year to you and Amir. How are you both? The salon? Business generally??
I thought Trevor may have posted a response by now but I notice that he has just put a few words together for Ananth so thought I'd step in for him on this thread. He can't concentrate for long and he's been having a few problems with his eyes so I'll do the secretary thing for him.
You are right, things aren't all that flash around here at present however Trevor always manages to keep involved as much as possible. It was lovely the other night when we had a great laugh over something silly he did. It was beaut to have a bit of the 'old' times.
He is very weak these days but of course his one steriod prior to chemo really sets him going so today he has been outside doing some work in the garage. He was go, go, go and of course I knew he would have to come down with a thud but as usual he can't understand why he's totally exhausted! Talk about a slow learner!!!!
How are your wedding plans coming along? Have you set a date yet? I really hope all is well and that you are enjoying all that life has to offer. Thanks for dropping into Trevor's thread ~ he was tickled pink to hear from you.
Keep in touch.
Love
Deborah (and Trevor!)
x

Hi Debs,
Weareboth really well tankyou. Making plans for my birthday next week. (spiked with peach schnapps)Jelly and icecream, naughty pass the parcel lol.
Business is better than i could have imagined. In the 9 days up til christmas i did 60 dogs! I was shattered! & i'm busy up til mid feb so i must be doing something right.
I'm glad you have your light relief amongst all the grief and turmoil. I bet you cling on tight to those moments.
& i hopethe family are taking care of you aswell!! Can't have him stealing ALL the attention now
Got a check up on wednesday and i'm hoping they'll stretch my appointments out further or leave me in the hand of my ENT dr.. Heres hoping!
Mylove to you both.
Michelle x

Hi! All,
Well I think it is about time I responded and making the excuse of being a bit slack doesn't quite count so I am sorry for not keeping in touch.
Things have been a bit on the crappy side for the last week or so and when I do sit down in front of the Laptop I have a bit of a problem focusing on the words as everything seems to be a bit blurrey and the time it takes me to compose myself I have lost the plot and all I want to do is go back to bed and sleep it off.
The last lot of Chemo seems to have given me a greater urge to just want to lay down and then once I have done that the body tells me to get something done about the house and the mind is ready to work but the body isn't.
My family are great and if they are here they keep telling me to sit down and rest but all my life I have been a doer and find it difficult to sit and watch others do my odd jobs, I have been having a lot more pain of late and after taking an extra dose of "Oxy Contin" I find myself feeling dizzy and then "you guessed it I want to sit and sleep" damm it all.
Anyway after this "Post" I am ready for bed AGAIN so when I am back to it again I will send another post.
Love to All
TREV

dear trev
you are really going through it at the moment me old mate but you don't need me to tell you that.i think you are doing the right thing listening to your body and resting when you feel the need.chemo really does take it out of you.it's great though that when you feel like it you are doing things as it's so easy to hibernate under the bed clothes isn't it.but it's lovely to hear from you and your devoted other half debs,that woman is so strong she is amazing but you know that too and the love she has for you is so apparant to us all.have a good rest trev and when you can focus and have the energy i will look forward to your posts about how you were doing.i just wish i had a magic wand trev to take it all away from you.never far from my thoughts love shirl xxx

Trev sweetheart

Dont worry ol mate, no one will take offence, we all understand and as Shirl says, listen to your body.

love
Angie
(Secretary Congleton Group TIFC)

Hello Trev ,don't you dare be hard on yourself ,the chemo will certainly have its bad days then settle and your pain medication is bound to make you sleepy i know the steroids give you that extra bounce and the hard bit is not overtire yourself too much when it kicks in try and save some for next day .

Soon the chemo will give you some relief and do its job .Im sure Debs is on your case pacing your outside DIY jobs but they will all get done in good time.

Enjoyed both your postings about xmas and your break away ,the pair of you are just so refreshing and indeed a match made in heaven as they say .We had one or two episodes here during the festives and if our sense of humour had not kicked in would have been a bit dire .

We had the family down yesterday for a wee birthday celebration for myself and it was lovely to see them around the table everyone all talking at once and making jokes .Paul is on some new medication at moment so managed well and did not need to go to bed and sleep.We don't have any grand children yet like ur Marley Trev ,as our eldest got married last year but was thinking how nice it would be to have a wee bundle in our midst.So when or eldest started to mump about feeling as if she had put on a few xmas pounds we all started saying to her "Mmmm have u got a wee secret to tell us pet " She started to laugh and kidded us on for a wee while but in all honesty it would be very nice .

Hope things improve over the next week or so Trev and chemo starts to give better results and you can drop down the oxycodon a bit during the day to have more fun time !! playing with Marley and getting ur DIY jobs done and ...romancing Debs .Hope you are still playing with that video and getting a good story together there .Was thinking about a title Trev and thought about."Trevor The Man " (instructions not included)lol.As indeed you are -"THE MAN" .

Keep in touch Trev and love to Debs .

Bell and Paul xx