Just to let you ALL (including Trev & Debs) know how much we are thinking of you. Can't find the words.......
Margaret & Neil

I am so sorry to hear your news. Both of you, and your family, are in my thoughts.

Sue

Thank you everyone one for you kind thoughts and posts.In answer to why they didn't re scan after February this is because the MRI done then was showing no difference from previous one and was done because Paul's symptoms were becoming problematic from end of Decmeber which began with a Haemorrage but was dealt with and said it was due to RT damage the pain in his face also started then and that was why this MRI was done (showed nothing new or untoward).The months following were taken up with pain progressing and pain control being involved to get this controlled as once again they thought this was expected RT damage .Also regular scopes ( showed no change )

The week before Easter things progressed with more deteriotaion and infection in mouth and chest and he was admitted to hospital and necrosis was discussed hence the CT scan(as this is better for bone evidently ) which has shown a marked difference previous CT but have no clarification as to how much is original tumour spread and if some is also necrosis .At this point in hospital when they went in with camera the suspect area looked red indicating problem beneath .

Paul's tumour is rare and position always been inoperable and difficult so even if they can clear this indecision up it will make no difference really other than if it is not necrosis palliative chemo may give some relief but he is not in good shape at moment and may be not the best option .Paul is now of a mind enough is enough and if they come back with this option things will need to be thought through very carefully .

He is still not very great and trying to get him stronger from this chest and mouth infection new paralysis on voice box causing additional problems . I am not feeling very good about things and my instinct tells me further treatment to buy more time may be more detrimental .Some pain free time without more sickness and debilitation has to be taken into account now .

This time last year he was feeling great and we werere preparing for our daughters wedding with the weight of another 6 weeks of RT ahead 3 days later, because they had found recurrent small cells during a salavage operation to remove adhesions.Now nearly a year to the day we went down to start this he is in this position can't get my head round how it has regrown so quickly after more RT.

We are still numb but striving to get him back on his feet and make the most of whatever time he has left, in truth it is surreal as we felt the second treatment would have been more sucessful when the area was directly underneath and was such a small area of cells .I always have a list of a questions and have known our Specialist for a number of years now but feel Paul's type of cancer is still a bit of a Quandry and difficult to treat especially in his location .

Have stopped myself thinking about what Dr Nutting in London may say or even offer including Glasgow .I can see he is not well and any more treatment is going to be detrimental and not a benefit but ultimatley that will be Paul's decision ,there is a difference to treatment being curative but weighing up palliative against qaulity of life when it is precious is of the greatest importance .

Today was a better day pain control working and tomorrow we are going to try an go out and get his legs in action for a little while and just push on and make the best of every day .

Thank you for being there it is appreciated ,sorry if I appear a little curt but just not really sure what is truly going on in my thoughts at moment and working out each day how to keep Paul upbeat and know when to give him time with his own feelings and when to pick up his train of thought without me breaking down and behaving like a no coper .

We have been together a long time it will be our Coral anniversary on the 18th of May we have had a wondeful marriage and very close and can read one another without talking at all so I am very conscious of my body language and facial expressions at moment as he picks up on them immediately, he is more aware of my feelings than me most of the time and points things out like little furrows on my brow when I am irritated that I am not even aware of even said the other day there a more lines pet but the tell tell expressions are still there ,lol.

Goodness me I am on the proverbal Bell ramble now ,enough .I am going to check on Trev and Deb's now.

Thank you for your support.

Bell .

Dearest Bell,

Amid all the posts you have received, I somehow cannot come to terms with what you have predicted to be Pauls destiny. I would never do that - till it really happened. At times we sit and worry about what is going to happen and its the worry that torments us more then whats actually going to happen. I am not going to say I feel sorry for you as Paul is very much here and is still fighting. He has withstood so many battles and I see no reason why one cannotgive him the benefit of doubt.
I know this may sound idiotic but its just the way I feel and will always feel so till whatever has to happen does happen.
Lots of love and hugs,
Ananth

Dear Bell, never worry you're being curt, on here you can be what ever you want. We will all understand.

It must be some consolation that your time together has been happy which is more than money can buy.

I wish you the strength to carry on.

Angie x

Make the most of every minute of every day Bell.

You are both in my thoughts, every day.

xx

Ananth ,thank you for your thoughts and have taken them on board .Prediction is not what I was trying to express .Given the facts as they are we have been told that longevity in the normal sense is now not a privelage to be expected and Choices if available will need to be taken on board carefully .Paul is an intelligent man like youreslf and in this situation needs to be free to fight the good fight for as long as he can in his usual way knowing he has left his house in order and made the best decison for him ,so to speak .

I am his wife and did post in probably an emotional way .But ... This forum has been an enormous help to us and is a way of dealing with emotional thoughts and coping strategies .Paul and I have not given up and will make the most of each day and accept life to the full as best he can .

I appreciate you are being supportive and have first hand knowledge of the ups and downs of this disease ,but just wanted to let you know I have not given up and not being negative just trying to deal with the facts and reality of the situation that has been explained to us .

Bell .

Go girl go

Bell

So sorry to hear the news about Paul. You must be feeling devastated. You have obviously had such a wonderful and loving relationship. Take care of yourselves and do whatever you need in your time together.

Forgive my ignorance, but how many years is a Coral Anniversary? It sounds beautiful.

Thinking of you both

Love

Gwyn

Hello Gwyn ,Coral is 35 years ,our daughters gave Paul a weekend at St Andrews Old Course Hotel St Andrews as part of his 60th pressie in March so we are hoping he can get a bit more get up and go so we can go through and stay .

We love it through there and would be such a lovely break ,Paul just loves his golf but although this will not be on the cards would be just perfect .Our daughter is celebrating her first anniversary tonight at the hotel in which they got married last May and theirs is paper ,but we organized a wee bottle of bubbles to be in their room on arrival so will see them tomorrow on their way home .Managed to pick up 2 lovely Austin Anniversary Rose Plants for them to take home as they are just finishing getting their garden patio done and planning out their garden .

Our next door neighbours have just celebrated their 60th wedding anniversary and were so chuffed to get their card from the Queen, was very posh indeed with a large picture of Queen on front and beautiful writing inside, hand delivered by lord Leutenent and had their photgraphs taken for local paper .They are both 90 now and had a double celebration for that before xmas ,how fab is that .

Love Bell .

I think you're both fantastic!! I have never really commented on your forum as you all seem such a close little family I don't like to intrude.I just wanted to say hello to you both and send a little hug and a squeeze and to wish you lots of love and luck for the future, Sammy x x

Oh My goodness Sammy ,you are a big part of this cyber family and your input is always welcome ,you yourself have been going through the rigorous problems that RT ca cause and your posts have been of great Importance to everyone.

I have learned so much from what you have been experiencing and would also like to say ,so proud you have managed to cope and also deal with your young son,Hopefully the tooth now removed will bring relief and now you are on final countdown with the hyperbaric Oxygen tank which does not seem like an easy experience to tolerate .

Sadly someone else will need to experience this and reading your posts will be a huge help .

Love Bell xx

Goodness Angie ,not 48 years lol, 35 years!! Paul was 25 and I was 20,back then becuase the age difference was 5 years his friends said he was " Cradle snatching",and by today's standards it is nothing when you see so many older men with new wifes 20 years etc their junior ,how times change, I was a young mum at 20 but that was planned , when I look around me now and see so many young teenagers expecting I wonder how contraception has come on in leaps and bounds but has not made any difference to these statistics.

At 55 I still feel as I have an excellent relationship with my 3 daughters and there is 3 years beween each of them .My eldest daughter only got married last year and is 34 this year and still in no rush to start a family as she loves her job and quite content ,me on other hand would just love to be a gran .

Love Bell .

Dear Bell,

Have been reading your posts and think you are doing an amazing job at being realistic about the future, yet positive and planning an anniversary break. I do hope you manage it, I am sure it would do you both the world of good.

I know that it must be difficult contemplating the future but how wonderful to have had 35 years of happy married life. I wonder how many couples can say the same? I think its a remarkable achievement and something that does deserve celebration.

You are both often in my thoughts.

Much love

Cath

Hello Bell
It's such a long time since I posted, or even checked your posts and I'm sorry you and Paul are going through such tough times.
I understand fully how you are coming to terms with yours and Paul's situation, Bell. Paul seems more aware of his likely outcomes and "prepared" (?correct word) to face or accept his prognosis than Trevor was.
To his dying breath I'm positive Trevor thought someone would walk through the door and say 'here Trev, take this then get up and go home. you're cured'. Even though the drs had been open and honest with him, deep down he was totally convinced he had years to go. I don't know that it could be called denial because we went through everything we needed to in order to have everything in order for his passing however he simply did not see it as being any time soon.
I'm saying all this because I can hear myself in your words. I KNEW Trevor didn't have long to live, or maybe that his life expectancy was limited. I always 'went along' with him and never corrected him when he made plans that I knew (and perhaps he knew too) were beyond his days. I didn't want to dampen his spirits but I had to be realistic in both my actions and planning which made things difficult because I couldn't share concerns with him. You know, some days he would rub his great big belly because he had some pain or another and say 'Somethings going on today. I hope it isn't anything serious'. What can you say to that? He wanted to live and that's all there was to it.
I remember an aquaintance saying 'it's not over til it's over'. That's fair enough, but I had to have my head around 'actuals', not 'mights' and that's what you're doing Bell. I believe you're doing the right thing for yourself. You can help Paul to deal with and rationalise his situation in any way he wants but you need a parallel circumstance where you can keep yourself on track and prepared.
To be perfectly frank with you, I'm concerned at how calm I have been since Trevor's death (one whole week, already) and sense tells me that I'm likely to hit a wall at some point. However, quite apart from all the support I've had, I think the fact that I have gone over this scenario and what I will have to face and what it would be like without him, so many times particularly over the last 6 months ~ that I'm actually just doing what I was preparing myself for. It is a great help to be realistic.
You are doing a great job Bell and I hope the fact you haven't posted for a week or so doesn't mean that things have taken a terrible turn for you, but rather that you are busy getting good results and/or having some lovely time together.
Thinking of you all the time
Love
Deborah
x