Hi Hazel

Glad everything went well with the Scan, we will keep our fingers crossed for the results. You sound as though you have turned the corner and are on your way up.

Personally, I have good mornings and bad mornings dependant on how much sleep I´ve had, this morning is a good morning. Throat still very sore. Another RT today, then only 6 more.. Would love to meet up with you at some mutually convenient location at some time in the future. We actually live in Sax, about 30km inland from Alicante up in the mountains. Will you still be here in March, don´t think I will probably be in any fit state to socialise before then but you never know (country boy, tough little sods) but we will arrange something.

Re mucus, ulcers and dry mouth. At the beginning my RT specialist recommended a food supplement called AminomixBi1 which is basically 5g of Glutamin and 2 g of full spectrum amino acids. Which they have "the pleasure" of charging 578.00 for one months suppy, however I found a better alternative for about 80.00 euros for one month. Neither is available on prescription here. However bought the first pack of Aminomix then got our money back later. Been taking the alternative, no mucus, no ulcers and yes I get a dry mouth but just keep sipping water. I also use a mouth wash called Perio Aid with 0.12% Clorhexidina and a 99% pure Aloe vera mouth wash and gargle they both seem to work pretty well.

I am full on the PEG routine for food, I can still swallow liquids but any food substance in my mouth tastes like a "turd wrapped in nulear waste" and makes me want to vomit. Apart from one day when we miscalculated quantities and I crashed 6 kilo´s in 2 days I am maintaining my weight. Both my wife and I are real foodies and the thought that I could loose that pleasure in life is frightening. We have a one week trip planned in May then a another trip in August, coming back to the UK (Pembrookshire), some fabulos "eating houses" in this area, not that there is anything wrong with Spanish restaurants, it just makes a change.  Originally we had a trip to the Maldives planned for this Feb, we have put that back to 2020 so we have plenty to look forwar too.

Keep us informed as things progress

Best regards Eric.

Hi Eric

on this trip we fly home 7;February for just over 2 weeks then on the 23rd of February sail out ifvPortsmouth to Santander planning 8-9 week stay .

Yes we have driven past Sax on a few occasions when we were first staying near Torrevieja,now we take the A30 atbthensplit after Albacete .

would love to meet up either you could come to us give the Jag a spin down to the Mar Menor we are 5 mins away from SAN Javier airport which moves on the 14th inland ,so at min we can walk to apartment building but on this trip we’ve hired a car .

Or we could meet half way or come up to yiu We both like the country side and john n the hubby is into his bird watching ,

sleep last night I was every 2 hours just to sip water then between 0600 and 0900 I sleep really deep likewise my nap atbtra time  20 mins but feel like hours .

Thank you for the tips I struggled to get my drs to pay for the Ensure food supplements only ones I could tolerate they wanted  to give me something twice as much liquid half the calories ! They just don’t get it inwas struggling to drink !! No peg was offered in the end I had to complain and get the CCG involved I won in the end  but it was so wrong ,maybe if I  never worked  I would have fared better.so no chance  if getting anything else off them  I am even buying my own co codomol as u can’t get in to drs for another week as my prescribed ones are now too high a dose ! Even used the cancer card with reception but it didn’t work ! NHS at hospital cancer leval brilliant lower down leaves a lot to be desired all budget budge budget.

But like you say slowly does it, we are off to North Wales in May have booked a cottage for a week for us a nd daughters family , we too like our food I haven’t lost taste buds which is a plus point and deffo getting better on the food scale unfortunately meat's the hardest but casseroles are fine a piece of rib eye rare is a longbwayboff I fear lol but small price to pay.

take care will keepmin touch

hazel

Hi Hazel

I am sure I will be "firing on al cylinders" by the end of March / early April and it would be great to meet you in the not too distant future. Where how and when is very dependant on how we both feel health wise. I suggest we think about that a little nearer the time.

I do not know what happened yesterday I slept for nearly 15 hours (only 6 pee breaks) and felt really good this morning, refreshed, no pain, unfortunately that did not last long. The first reflux took care of that, my own fault, laid down flat too soon after being fed.

I could not have survived without the PEG, my wife feeds me 4 times a day a total of just over 2000 calories. I was prescribed Ensure to start with as a "drinkable supplement" but as soon as I switched to the PEG, they prescribed SondAvant, which apparenly is better when using a PEG. I cannot believe you had to go through all that "agro", that´s the last thing you need.

When are you in Wales in May?

Like you say everything we are going through is horrible but it´s better than the alternative.

I am making a list of all the foods I am really missing, on which I am going to overindulge when I can actually taste the food. I would kill for a Big Mac and fries right up to a steak tartar or a fillet steak with foie in a pond of red vermouth reduction. Scallops, I love scallops. I could go on and on. Luckily we live near some very very good restaurants, not necessarily a fancy restaurant but "the food" is fabulous.

Have a great week and hope things continue to improve.

If you feel in the mood, tell us a little about yourselves

Speak soon.

RHi Eric 

sounds like a plan for late March early April.

i will send you a friend request then we’d can chat without everyone seeing it if that’s ok ?

i n the meantime 

Wales 23 May cottage near Portmadog 

me married tomJohn 40 years in June next year .

previous to retiring I was manager of a business travel unit in Barnsley ,I worked in travel from being 16 finished at 52 

John from being 18;worked in the coal mines as a deputy supervisor) underground hence why when he retired we originally took our caravan to Spain in Feb 2015 tima really lovely quietbsite near Los Montesineos. Unfortunately afterv2 years we turned up to a version of Benidorm on speed ! The Spanish owners has been hoodwinked by a conman from Wigan who thought he could re create Benidorm Palace  bybhiring 2 nd rate turns. Our pitch was one of 15 that was badky affeccted . We went back in September and had one nights sleep where we weren’t disturbed so the office wouldn’t do anything so we found a lovely estate agent in Los Alcazares whomintuen hooked us up with a 2 bed apartment 10 mins walk to sea and went backmtook our stuff out of caravan putbherbup,dormsale and walked away. A shame as we had spend 3000 euros in a fixed canopy but that’s life .caravan sold in 2 monthes .then last Januarybthe conman did a runners owin a reported 30,000 euros !!!

we have the apartment in a rollingb12 month c ontract ,it’s in a residential block of 12 which we’ve only ever rvseen 2 other neighbours,the majority live in Madrid and come in Augustbwhen it’s too hot for me .

We cycle a lot and birdwatching.

we have one daughter Nicola 37 one grandson James .Nicola is corporate governance manager for Heath education England. ( NHS).

Yep,got this week to get through  then bug meeting next Monday I have faith in my consultant who is a really great man.Top,leader in his field so cantbask morebthan that,

look forward to hearing a bit more about you as well.

15 hours sleep wow !!!!!! My sleep pattern now I am coming slowly iff the tablets my sleep last  night I managed an hour asleep 2 hours tossing n turning but like you say small,price to,pay Just greatful thatbwe are alive .

Will tell you what stage I am at now .

the mouth feel s like it’s got glue in it permanently so bad that when I spit in sink which  i can assure u is nit normal I abore spitting !! It’s that thick that the cold water tap turned in full will not shift it !!!

plus heartburn creeping in so in the gavisxon tablets.

agrer re food apart from scallops I am allergic big style to those.

i keep thinking shall I try a macdonalds as well !!!!!! Strange as normally I wouldn’t .

dont know if you’ve read my blog it’s got pictures of me on it.

www.radioactiveraz.wordpress.com

cheers

Hazel ps just tried mango juice it’s gone down ok 

Good Morning Hazel

First thing, lousy night about 2 hours sleep. In the middle of the night I had an epiphany, surely there must be a Saliva Substitute on the market to help stop this dreadful dry mouth symptom. Barbara went to the chemist and has found an oral spray, from Lacer, seems to work, the test will be tonight. Look on line there are a number of products available from the UK. let me know how you get on.

Yes, please send a friend request!

A bit about us. Barb and I, 38 years married, (second marriages) complicated family best left alone. I´m 67, Barb´s 75 and a very beautiful lady. I retired when I was 48 then after a year providing consultancy, fulfilled our dream and moved to Spain when I was 50, 17 years ago.

Barb has had an interesting career path varying from shop assistant to Prison Officer to a fully qualified psychotherapist, not only is she beauitiful she´s very clever. Originally from Bristol, we met in the Isle of Man when I was there on business.

Me, country boy, born in a little village in Hertfordshire, left school with two O levels, apprenticeship as Electrical Engineer. Switched to a selling career mainly in the world of Military Communications, data colection and encryption then Security Systems in Military situations. Got my first Directorship when I was 34.

We both love travel and have been lucky enough to travel all over the world. Food lovers, as I´ve said before. Did start and run the Jaguar Club in Spain for 7 years, left that alone about 9 months ago.

Looking forward to meeting you in March /April.

Barb has just called, time for another PEG feed.

Busy week this week, more Chemo and RT and Dr´s appointments so don´t worry if I take a few days to answer.

Have a great day, best regards from Eric & Barb,

.

Hola Eric, ive been awaiting approval to join, as being Spain based too, but the moderator kindly let me join. So what i have been waiting to say, and what you have asked......Amino Acids. Yes! I am on session 6 of 33 so your posts have gave me hope, got the Aminos free, on the end of box one, will keep going thanks to your success with them. 

Hi Eric and Barb

as the sayingbgoes been there done it with the saliva substitute sprays have tried AS saliva spray works but fornabiut 30; seconds bit better in night boots do one called expert again similar results. Plus has various ones given to me by nurses hope they work for you. My sleep was  a bit better than yours I did 2 hours woke spray sipping water sleep from midnight until 0600 then 2 co codomol 8 mg yeah finally reduced the 30 mg ones.

the drybmouth i have never totally lost saliva which helps no end when eating but it’s got thick n gunky ,which is apparently my saliva  glands working but not fully.  When I think about ut two weeks ago my tongue every time I woke wS stuck to roof of mouth,and now it’s no longer stuck ,making a noise like 2 piece  if Velcro ripping apart !! Nice analogy! But true. 

Barb sounds wonderful and 38;years is a long time you will get to your Ruby I am sure as you like me are full of positive mental attitude with a strong partner behind you.

we were both born in West Yorkshire well suppose west riding in those days ,both come from small mining villages so we are country kids as well. Don’t do big city’s at all. 

Good luck with spray there is also something else online next  that u might consider Xyimelts from the mouth ulcer company ,I have used them but because I am producing saliva they make me make too much !!! They are a small tablet that u literally stick to your gum takes 20 seconds to stick and you get about /3 hours from them in night cost £8.59 ish plus post think Amazon U.K. have them as well. 

Worth a try I have tried all sorts 

good luck with chemomr/t and peg this week you are nearly there m then it’s the Long slow haul to recovery just remember tortoise and hare it’s nit a process that can be rushed.

look forward to hearing from you

Hazel n John 

Hineric and barb

have sent a friend request yesterday should be should on top right if your screen ? Unless coz u are in Spain we may not be able to communicate that way 

h

Hi TFS

youre most welcome thank you for reading my blog,I find it cathartic writing it. 

Ask away when u are ready ,where in Spain are you ?

Hazel