Dear Bell and Paul,

Bell, like Debs I hope your absence from the thread is not because things have taken a down turn, but because you are getting some quality time together.

I just wanted to say Happy Wedding Anniversary to you both. I hope Paul has been well enough for you to have a little celebration of a truly marvellous achievement.

much love
Cath

Hello ,not been updating as we are in a bit of a pickle really and just trying to keep on top of things .Every other day some other infection of sorts starts to appear in form of mouth kicking off again or his ear etc .Been working with Hospice nurse and GP mainly who are being great .Consultant not been back in touch yet but PET scan date in for next week ,feel it may have been better done back in February but I suppose it may give the missing pieces as to whether it is the cancer back or Necrosis. Eating and drinking becoming problematic in a big way and have asked for an emergency appointment for a Video fluorospcopy as I am positive thinner solutions like water etc are going into his lungs which our GP also thinks and has seen to this appointment yesterday so hope that will be soon .( bit cross as this was supoosed to be done when when he was in hospital ,but told them his swallow was fine, cough was his chest infection and not the fact he has paralysis on one side of his throat !!)

Last couple of days he has been quite low coughing when eating and drinking worse and weak so any walking outside is not great. I phoned GP yesterday and he met us at Cottage hospital at lunch time and did chest x rays both lungs at bottom left showing possible infection again and also bloods from a few days ago showing he is anaemic .So another higher strength anti biotic started and iron and he did more bloods yesterday.Paul himself is in positive mode believing theese things will settle down and better time ahead .I am aprehensive now about this Pet scan as it will be a trek and and a long day he has to fast and only allowed water to drink which is a problem but maybe have had his swallow checked by then and something given there to help in way of a thickner.Pain is under contol with a few breakthroughs around back of neck eye and face area all reminiscent of years ago.

Just feel things are becoming worse very quickly and keep hoping for a few days of some kind of reprieve.Sadly our wee anniversry trip did not happen, but family came down and just had a get together which was lovely house full of beautiful flowers .Have his mother and sister coming today so a bit nervous that it goes ok they have been away on holiday so this will be first time seeing him since news .His voice is nearly non existant so difficult to hear and hope his mum will make him out and his elder sister not get emotional as I don't want Paul feeling he looks a poor soul as his belief in better times ahead is what is keeping him going.Loosing his speech and eating being slow and noisy has now chipped another part of lifes enjoyment away but he is happy to enjoy pottering in house and garden and so looking forward to British Golf open in July which at least he can watch from our window and the telly and who knows will be able to go accross and sit in the stands .So this is our goal .

I am a bit in limbo and everything seems a bit surreal.Feel posting now is not positive for members starting out with their treatments and who will come through just fine like so many members do, but going into all the little set backs and how it began so quickly over a period of a few months may give others the wrong impression while waiting for checks and scans .

Was so lovely to see your post Deborah think about you every day and already the forum seems so quiet without Trevor's input and anecdotes .I do hope you keep in touch Deborah as you would really be missed . The planting of bulbs in the garden was such a great idea ,really made me feel so emotional.


Will post again when things pick up a little and the missing pieces of this jigsaw are finally pin pointed as to what is exactly going on .

Love Bell xx

Dear Bell,
Keep aiming for those goals. Stay strong - which you obviously are!
Thinking of you both lots!
Much love
Margaret

It’s just not fair is it Bell. What difference is it going to make if they put a label on it. All you can do is give him your tenderness, love and support and hold on with him that he will go to go across to see the golf.

Stay strong.

Hello Bell
What a relief to see your post although as I expected, you're doing it pretty tough right now.
All you can do is work on each issue as it presents itself and of course, that's just what you're doing. It's very hard but I'm really happy to hear that Paul is set to take on the golf (ugh! he IS a sick man!!! tee hee). Get his name on one of those seats so that he'll be sure to have his spot marked.
Don't worry about your posts being upsetting for new members,Bell. This forum is a 'warts n all' affair and for Trevor and I personally, that was just what we wanted when we first came trawling for information. There are plenty of stories that show a cancer diagnosis is not the end of the road and with each thread labelled, it's easy not to read something that isn't to your liking.
It would be a pretty horrid state of affairs if members weren't able to post when the going got rocky and support was needed more than ever. No-one would expect you not to post and in fact we all fret when you go quiet so please continue to post away.
I know we shouldn't say 'I know just how you feel' Bell, but I think I do and my heart goes out to you.
Love to you and please give Paul a gentle hug
Deborah
x

Bell I know this is probably a dumb question, but has he not got a peg feed? Hope you can build him up a bit, it's good to have goals, hope he makes the golf (though i agree with Deb on that one!). Good luck with the scan, at least they will know what's going on. thinking of you and hope you have better times

dear bell
i am sorry that it has taken me so long to reply to your post,it's not that i don't care it's just that i don't know what to say to you.i am so sorry to hear this awful news of paul and life has dealt you a cruel blow,i am sorry you did not get away for the anniversary trip but having the family around must have made up for it,yes you must feel you are in limbo and no wonder why,as everyone on this site is too i am thinking of you both and i wish i had a magic wand to make it all go away for you both.with much love shirl xxx

Hello and thank you for your kind words and comments . You are an inspiration indeed Deborah and have made me feel I need to give myself a shake again and join back in as I suppose every experience can be of use .Regarding his beloved Golf ,all sorted he is a member there and gets his members ticket plus one complimentary that will be mine as I don't golf always say to his golf buddies it was invented by God to give Women 4 hours Peace .I also went accross and got 2 special tickets for 18th stand so he can be in the middle of the excitement in comfort, come hell or highwater I will get him accross there. Jennifer, in answer to the peg tube ,Paul did have one for around 7 months on completion of treatment originally in 2005 but managed to have this removed and be able to eat and drink normally although dry mouth and reduced taste was a always there but at least was able to have a meal etc .

After second lot of RT last May he was still doing great but come xmas things went down hill with increasing pain down left hand side of face and constant ear infections .Come Easter things got worse with more infections in mouth and throat and was admitted to hospital with aspirational pneomonia, during this period he also developed vocal chord palsy and since he has been home his swallow has become worse and eating and drinking very difficult so on stage 2 feeding etc .The CT scan they did in hospital showed marked erosive changes since February scan what they think is either recuurence or possible osteoradionecrosis of the left skull base and also a lot of dead tissue at back of nose etc .Technically a biopsy of this area would have been better to give an answer but would prove too difficult and not worth the risk.So... the Pet scan is to be done next week in order to clarify things and enable them to plan a little better to help manage things .

His chest is still a bit of a problem and I am positive this is because his swallow has deterioted again but awaiting appointment for this which they said they would get done soon .Also a little anaemic and will make a decision on that on Monday when recent blood tests come back .They did chest and liver x rays and ultrasounds when he was in hospital to rule out any spread there and were clear so I can oly assume at moment it is the nerve palsy in voice box area which could be causing food particles and fluids to go down wrong way which needs to be addressed .

We are just pottering at moment and try and go out each day for a wee while and when he is flagging come home and do the 4 hourly meds routine and try to make sloppy interesting meals .Even his beloved Calshakes are a menace to get down and feel thicker smooth consitencies are better so I am now thickening them with some ice cream.Was so hoping we could have had this seen to this week .Goodness I get so impatient.

The weather here has finally warmed up so now out in the garden with him and hope it continues over the holiday week end .Blasted Telly went Kaput yesterday and got a new one ,asked this chap we know if he would rig everything up for us as we are not very good getting the sky and DVD etc put in right places .He said yes no problem and duly arrived but was worse for wear and took him 2 hours and complained the scart plug didnt fit properly AGH !!! nearly had a canary and thought he had forced it in and broken it, but eventually things worked ok was so glad to get him out the door,when it was finally working he then said could he have a beer but it would need to be ice cold!! ,well, I was ready for a brandy because of the carry on and just told him No ,how much did we owe him and I had to see to Paul's tea , then had another hour with Paul trying to figure out the new box etc god I felt so old, we were comical pulling the box off one another trying to figure it out.Problem was old telly we could work whole thing off one sky box this one didn't or so he said but it does now ,Tee Hee .He wouldn't even help me cart old heavy telly downstairs said he had a bad back .

Well there you have it Guy's that has been our diary for the last day or so and feel better for getting back into the forum .

Thank you for the nudge .

Love Bell .xx

Paul had his pet scan done on Thursday and went ok drove up and popped him in told to come back in 2 hours so met my daughters to pass the time he managed fine with just the water and has also been given thickner sachets to add to thin fluids at moment so that it does not pass back down his nasal passages and also cause this coughing .They seem to be quite good and have managed to work our right amount so it is not too gluppy .Can add them to coca cola and all drinks even a wee beer yesterday ,lol

Hoping to hear about Video fluroscopy next week to check this palsy at back of throat and it has been mentioned there may be a chance of some kind of injection think the word TEFLON was used that could help with his swallow and maybe even his speech which would enable him to have a drink and some soup etc without this rather loud coughing and choking .This will all depend on Pet scan and video fluroscopy as to whether this will be an option.

Pet scan will now clarify what exactly is going on whether it is necrosis ,recurrence or both and have said it will help give them a better idea has how to plan and manage what is now underway in order to give him the best quality care .

The Steroids are giving him a mental boost and physically he is now on his feet although dizzy spells still come out the blue and he tends to pull to the left a little if he has been doing too much .Oddly enough the copoious mucous and nasal dripping has stopped but I am noticing changes on the left hand side of his face especiallty his eye area which seems to be more swollen and a little more closed but his sight remains intact which is a godsend as he loves to read .His appetite is back due to steroids and there is no filling him so he is munching away with my new and improved squidgy meals and has taken a thing about the Macdoald Raspberry Sundaes and Azda chocloate soft mousses.Finally after all theese years he has developed a sweet tooth.

Well guys hope you are all enjoying the good weather hope it is set to continue .

Love Bell .

Dear Bell,

Glad to hear that the PET/Scan experience was not too traumatic and that Paul has at least been able to enjoy some puds and is feeling a bit stronger thanks to the meds. I can't believe that 6 months ago I was deperately trying to force Chaz to eat and now I am pushing him to start a diet as his weight is almost back to where it started!!! I feel mean, but I think him being over weight and fairly sedantry may be responsible for the back ache he has been having on and off for 12 weeks. Am hoping its nothing more sinister, but will follow up at his next check up on Wednesday.

I hope you have both been able to enjoy the lovely weather. We have enjoyed some of it and Alex and Chaz have had a lovely time together over the last week.

Will be thinking of you when you get the scan results. I know that you want to get to the bottom of what is going on, but I am sure that won't be easy for either of you.

Much love,

Cath

Hello Cathy, lovely to hear from you ,I understand about the weight ,Paul was so thin when he finished treatment, and also after this last set back but it is amazing how it just creeps back on and yes it is possible this is why he is having bache ache but also could be caused by just about anything, he has been weak and now feeling better so is maybe doing more now and again and maybe not lifting things correctly .Think after treatment the muscles get so weak through RT fatigue and being poorly and when they are over 21 ! lol takes a wee while to tone up again ,I understand the worry of every wee ache and pain as your mind never leaves that sinster place of what if .

Paul has only been on the Steroids a few weeks now and he is constantly hungry which is good as it means I am getting lots of nourishment into him regardless of the Disphagia he now has, have noticed over the last week his tummy etc are padding back out some .In fact today we will need to get a couple of pairs of new shorts to wear as sitting on garden yesterday he felt they were cutting him in two .In fact I just cut the elastic in one pair at back .

The thickening powder we got is working well and I am adding it to everything tea ,water and yesterday he even had a wee beer although it was a pudding consistency tasted perfect and went down a treat without coughing or refluxing back through nasal passages so he fair enjoyed it .

How did your trip go Cathy don't remember you posting about it ,or have I got the dates all wrong ?.

This week is a bit anxious again. I don't know if you remember me talking about my middle daughter who has been very tired etc and has been getting blood checks showing abnormalities in her white cell count her immune system is constantly low and picks up everything along with fatigue and just not herself .Well she came down with shingles 10 ten days ago down the side of her face and has been really sore ,however that is clearing up and goes back to haematology on Wednesday for more tests so I am hoping there is not going to be anything more serious going on with her.They have said sometimes it can be caused by some dormant virus and with this shingles outbreak maybe it has been lying there dormant and finally appeared ,I have not really got a clue but as usual just been trailing internet looking for answers I like and not the ones I don't, think we can all hold our hands up to that one .

Hope Chaz is feeling good and the two of you are enjoying the warm summer which has finally arrived .Lovely to hear Alex is visiting again I'm sure he will keep you both amused I always find them entertaining at that age ,mind you I am not used to boys as mine are all girls but enjoy the boyfriends when they are down and it is good for Paul to have some male company as when we girls get together he can't get a word in and movie choices are all chick flicks.

Not really looking forward to scan results as it will be another chat and reiterate the fact that time is now not a luxury and over the last couple of weeks Paul has put this away somewhere in his head and believes he will have another 10 to 15 years with the right care and we both have settled into this positive somewhat surreal bubble, but it is serving us well , especialy as things are a bit more stable at moment regarding pain control etc so he is walking and eating and managing little outings. His speech is weak but quietly audible ,strange really how you adapt and make the most of everything .Well today looks like another beautiful one so we will get new shorts and some more plants then back to the garden and enjoy .Talk soon Cathy love to hear all you and Chaz get up to .

Love Bell xx

Dear Bell,

So sorry to hear about your daughter. I remember clearly your concerns but assumed that you would have reported if there was any cause for concern. Does sound like she does have a virus, poor thing shingles can be really awful. I hope they manage to identify it and get her on some anti virals that help.

Alex and Chaz had quite a good time. Alex is very interesting as he seems to vascilate between being a grumpy hormonal teenager and a young boy. We brought him down to Brighton for the festival and he got the chance to see some risque cabaret, great street theatre and a classical concert with Dad. They both also had lots of fun shooting targets in our garden with their new rifles and enjoyed the Star Trek film enormously.

Only slight downer in the week was when I went up to one of our computers and found a porn page open and immediately accused Chaz of being the guilty party. Anyway it turns out it was Alex!!! Chaz has consequently been putting all sorts of controls and checks on things, but it seems that the poor boy has been hit with an obsessive interest in sex poor thing. LOL

Chaz took him back to Wales yesterday and now we are anxiously awaiting Friday as Chaz has decided to buy himself a Harley D - a motorbike he has wanted all of his life and decided to go for given the relative importance of the here and now. If he had proposed it 12 months previously I would have really put my foot down, but now feel really excited for him as he is like a young child on Christmas eve.

I am really pleased that Paul is in a positive mental place and really hope that scan results dont put a dampener on that. If I were you I would not even discuss time - well not in front of Paul. Did you read the story about a man claiming his winnings from a bet he had put on himself outliving doctors predictions. I also saw a programme the other night in which a woman with cancer given 3 months to live has gone on for years and years.

I just hope the medics can find a treatment plan that gives you both as much good time as possible and minimises any physical (or mental) pain that Paul may be vulnerable to.

Paul is so lucky to have you by his side Bell. I hope you get some strength from that.

Much love

Cath

Thought I would update our post .This week has brought things into a clearer focus .We got a call on Monday to see specialist regarding Pet scan done last Thursday so the clearer findings are now not so much necrosis but the original tumour has regrown very quickly in the same place in an agressive manner which has caused the current nerve damage and palsy in voice box and throat regarding his swallow .We were told that sadly this can occur sometimes with re- irradiation and also previously treated cancers.There is some necrosis which is due to the amount of RT he has had but is to be expected .

The position now is back to original oncologist who may feel some palliative chemo may be of benefit but he may want to do a biospy first ,Our ENT specialist is not to happy about this as he feels the inside of Nasopharynx is in poor shape and delicate, does not feel clearing area out to do biospy would be ideal as it may cause some more bleeding and also because Paul's swallow is poor and we have to watch for aspiration with his chest .So this will depend on what oncologist feels would be appropriate .He had the VF done yesterday to see if they can improve on his eating and drinking with a view to keeping his chest clear so awaiting results from that .If a general anaesthetic is thought safe and the best option paliative chemo then he will do the injection in the voice box but said it will only slightly improve his speech and ultimately is of more use in patients who have lost all speech . So that is the position has asked Paul to have a think about this and will contact us when has spoken to oncologist.Basically we just need to keep on top of everything infection wise and concentrate on nourishment etc and make the best of every day ,Think things have hit home with a bang today and Paul feeling jaded and cross that the second lot of RT last year which has taken another year of his life away has made no difference what so ever.Really it just caused more problems and total loss of hearing in his good ear which constantly infects.Today the conversation was more to the point and he was well enough to understand things fully where as last month he was still very weak and ill. I was aware he did not really take on board the converstion, he has been in a bit of a bubble just not accepting things .Feel he thought the Pet scan would prove they had made a mistake and something could be resolved

Tonight ,we talked things through properly for the first time but intend to get on with life as best we can and not give in and shut the door . Sometimes a positve outlook and inner strength can work small miracles so that is our plan tonight and what we are going to hold on to.

Our middle daughter had her appointment today with haematology and they are redoing all her blood work with a view to getting to bottom of her low white cell count and constant infections .They reassured her by saying they feel it is probably an underlying viral situation which has not cleared but she has to go back in 4 weeks so hoping things there will be ok as this seems to be going on forever .

Well .........been a horrible day but wee are here and together and enjoyed the afternoon sunshine in the garden .


Bell.

Dear, dear Bell,
Your post brought back so many memories and some feelings that I'd pushed back out of the way. I really do feel for you both.
You are doing the right thing in making the most of every day. I know I go on about it a fair bit, but when it comes down to the nitty gritty ~ we should all be doing just that because not one of us knows how long we're here for and so should be living each moment as though it was our last.
It is only natural that Paul would be feeling, angry and cheated out of a recovery and cure that the second round of treatment offered however that wasn't a waste. Afterall, who knows if you'd have had the past 12 months together if he hadn't taken a shot at the treatment?
It is a tough time for you (I keep saying this, but it's the truth and needs to be acknowledged)and I hope you can take some comfort from the love and positive vibes that are coming your way from way down here.
Love to you both
Deborah
x

Dear Bell,

So sorry to hear that the scans confirmed your fears. It must be a very difficult time for you both. I do agree with Debs and am so glad she finds time to remind us about making the best of the here and now. I was really reminded it of that when I looked at the photos of 3 lovely young medical students who lost their lives in that awful plane crash earlier this week. We never know what is going to happen to us.

I also share Debs thoughts about Paul's decision to have a second round of treatment last year. You made that decision with hope and I think that you should probably conclude that it was the best and bravest decision that you could have made at that time. As Debs remarked there is no way of knowing what would have happened if Paul had not had the treatment, but it certainly is possible that you may have found yourselves where you are now much earlier, and perhaps you would have felt equal regret about choosing not to have tried the treatment?

I am so sorry that you have been and are going through such difficult times, but I think you need to recognise how brave and brilliant you have both been in your struggle with this bastard disease.

Much love,

Cath