Hi guys

Well just over 6 weeks and 5 weeks out of hospital

See ENT team on Wednesday 6th June

still on 3 fortisips to 5 depending what sloppy food im eating

Must get over 2000 cals and 85 to 90g protein a must

eatind deserts like creme brulee ,youget no bits had a sloppy weetabix yesterday

and my lovely wife is making soup today (id be lost without her)

Still have a lot going on in my head ,see the pycoligist on Tuesday 5th June

Grandaughters 2nd birthday on Monday party this Sunday

Will be there first time out in a large crowd of everybody eating and drinking you know enjoying themselves (me with my fortsips and water having to take meds spitting into my hanky brushing teeth etc)but i would not miss it for the world

Feeling a little better still have mouth ulcers on one side

tried horlicks boy did that sting my mouth

Let you know what happens to both visists and the outcome of the disscussion on the PET scan

Thanks for all your support again,we do appriciate

Dave and Sue

Hi you two.It is so good to read your posts and see the real effort you are putting into getting better and how you both do it together!!I spent thursday with lynne my daughter and Georgina my grandaughter and boy did it make me feel better.Saturday night i had Philips daughter Josie for the night and her mum and dad amd my mum came for a barbecue on Sunday.When everyone had gone i just sat in the garden in the sunshine and cried.Now i have this terrible feeling of loss that is choking.Still Thursday i am babysitting for phil all day so that will stop me from thinking of Robs two month check up.

Love Liz

Hi Dave and Sue

Good luck to you on Wed hope everything goes well.
I am sure that Sunday will be a tonic and you will have a great time with your grandaughter and family.

Regards


Tony

Hi Liz
Good to know your ok and holding up

I know you will always be thinking about Rob at times and especially during check ups

Your a good person
keep in touch

Hi tony

Thanks let you Know what happens

Best wishes to Kathy to

Best Regards
David and Sue

I will be looking forward in hearing how you go on Wednesday, best wishes on that day for you both.
It is lovely to have that time with your family, grandchildren just makes it or the more special.
Best Wishes,
Tracey

Hey guys!
You're doing great! Good luck for tomorrow, let u know how you get on!

& Liz, kids are a breathn of fresh air aren't they?

All the best to you all,
Michelle

Hi ya

2nd check up

throat sore and one side of mouth ulcerated

happy with the feel of it

said PET scan would not be benificial

saliva glands nuked well doctors words were blasted

said my mouth would go through 6 months of change and whatever it was like then it would stay ie taste buds ,saliva

still strugling with food managing about 2000 to 2200 cals per day

3 fortisips protein 20g protein in each bottle 300 cals = 900
calogen to add err hate the stuff so only about 165 cals

rest made up of soup,and sweets soft stuff
will i ever get onto something decent

lost weight now 83.7 dieticician mentioned in conversation if i continue to lose weight peg or nasal tube

me and Sue had a few words see im not an angel

rough 2 days with pycholigist and ent still no excuse

appologised it hurts me so much when shes hurt

thanks to all for their best wishes and support for the day

take care
Dave
Dave and Sue

ave,
I'm 6 months on this month and my mouth plays tricks on me every day! Sometimes taste is great, sometimes it all tastes the same. Sometimes everythings too acidic, other days i can eat oranges with no trouble! Somedays everything seems to scratch and irritate, other days it all slips down just fine! So in my case the 6month rule isn't set in stone. Every week i'm still discovering new stuff i can manage.
LOVING eggs at the mo, all kinds, soft boiled, omelettes, scrambeled. Been getting a cheese and mushroom omelette for lunch from the cafe opposite work which keeps me going. You'll get there guys! Bare with it. I'm sure soon there will be light at the end of the tunnel.

Keep your chin up!
Michelle

Michelle
im thinking that i wont get proper food because of lack of slavia

But well done you glad your enjoying your food
and loving eggs eggs benidict was my favourite

your omelette sounds nice

this gives me hope and thanks for that

your e-mails to all always cheer me and Sue

Take care

Dave and Sue

My saliva is virtualy 0. There's not enough to chew the Biotene gum even as it wont dissolve the outside and it wont soften the gum. So trust me, it wont hold you back with most things!
Breakfast is ok, cuz i have lots of milk to get things down. Lunch i have my omellette, & ALWAYS have salad with it cuz cucumbers have lots of water content, as do tomatoes so they help to get food in. & dinners i manage by having lots of gravey, pasta sauce, or golden rice (i make extra broth & use it like gravey) & puddings are simple - just add cream! I don't snack alot now as there isn't many things you can have on the run that have moisture. But i do dunk jaffa cakes in hot chocolate. They're fab! So you DO get used to it. I was just thinking today, that i don't really miss bread, crisps, or chocolate bars now. & i can't imagine eating them now either! It's amazing how your body adapts to this new kind of normality. The way i eat now feels normal to me! It's like i can't remember it being any other way!
I exect in a few more months you'll be saying the same as me!
The only thing i get frustrated about is eating out. My choices from the menu are limited now.
The thing that shocked me was visiting the Royal Marsden. The biggest cancer centre in Europe - and they had NO food in their cafe for Head & Neck patients AT ALL! It was all muffins and sarnies and cakes and crisps. How rediculous! You'd think there of all places you could find something suitable!

You're doing great guys!
Michelle

Hi Michelle

Thanks for the response, it is lovely for Dave to hear that you can adapt to eating normal foods after treatment. I keep telling him it is still early after his treatment and that he will be able to eat 'normal' but normal is different to everyone ane we will adapt to what he can eat, which means we will have a healthy diet instead of making do with quick meals. He can chew the the Biotene gum.

The doctors were over the moon with him today, and could see a change in him from last week, the dietitation is happy with what he is eating and explained that he is proberbly more active and this could account for the loss, they will continue to monitor him for the time being.

It is lovely to hear you comments and it does cheer Dave up and as you say in a few months time he will be posting what he has been eating on the site.

Thanks for you support.

Look forward to meeting you at the walk in October.

Sue

Dave & Sue

David & Chelle,

I also heard from the consultant that my taste buds and saliva at 6 months after my treatment was as good as it was going to get. This really upset me, and I spoke to Pauline, who assured me that recovery takes much longer than 6 months. I am nearly 18 months post treatment and I'm finding more thgings I can eat every day. I have recently discovered that I can eat chocolate cake, if it is very moist and has loads of buttercream icing, and kiddies chocolate like chocolate buttons, where the chocolate is very thin. I have no restraint after not being able to eat any of my favorites for so long, and I've put back all the weight I lost and some!
I think it helps is to realise that your diet is not as it was and to take supplements if you are missing anything. I don't drink any milk, and I also can't eat cheese as it just sticks to the roof of my mouth, so I have had to start taking calcium supplements. My nails were splitting, and I dread to think what was happening to my bones.

Anyway, its early days yet, and you have a long way to go yet. Don't expect too much of yourself just yet, and do try to recognise small improvements.

Hi Dave and Sue,
I know this is a tough time for you both, I was just thinking about the trouble with eating, Darrel doesn't have alot of saliva still either and if he is trying to eat something that needs help he always washes each mouthful down with a drink of water or something, milk sometimes. He is finding rice ok, and I have been making creamy pasta dishes because they seem to be going down alright and of course the usual soups and soft casseroles. As most of you say the sweets are the easiest. Anything with a tomatoe base he finds difficult, it irritates his tongue and throat too much so now I don't do anything with a tomatoe base. It is a learning curve for both of us, my cooking and his eating!!
Sue - it breaks your heart everytime when Dave gets a little snappy and I know this but I know you also know it is the frustrations of the day to day living that gets to him, I must admit to you all everyday when I read what everyone is going through it gives me the strength to keep going, because you see there is worse then what we have and I tell Darrel all about you all and he is learning our problems are small compared to some. Even his moods have improved and I'm sure it is now because we know just how many other people suffer everyday. Not to say when he snaps at me again I won't be hurt but I'm learning to handle it better and not take it as personally. I see you and Dave like us, we have so much love for one another and the road is tough going but the Love will always get us through, that one word does mean so much.
Bless you both,
Tracey xx

Hi Jenni
read your post thanks for that use to love chocalate. but this saliva things is really getting to me i know its early days thanks i alway expect more but shoul listen to what everybody giving me advice is saying
Tracy
Not that far for pasta yet had some really milky porridge this morning took half an hour to clean my teeth with no saliva and partial tounge it stuck all over my teeth

im thankfull i have Sue at my side and not a day goes by that i tell her how much i love her
i write her letters short ones most nights and put them on her pillow (big softy)and i appriciate everything she does for me

Having to count everthing i eat at present in cals and protein is a nightmare to have to have 85g protein a day over 2000cals

nice to see darrel is improving and with your support will continue

Glad you got good news David,and i am also glad that for you and sue and tracey -lee love has helped you conquer so many demons.Pity it wasnt enough for Rob.

keep up the good progress

love Liz