Paula xxxx

how are you doing ... back at work, that’s good but tiring I guess.

hows Lynne doing ok I hope and not not heard from John.

so how’s you new normal ????

vatch

Hi Vatch, its new! What else can you say! I miss my teeth,. I miss taste, I miss my energy, but all in all I feel pretty good... I'm worried about John it's horrid when you don't know how someone is doing.... Lynne was back at work last time I talked to her, she was doing ok...

Thanks for staying in touch

Glad to hear you are doing ok...xxxxx

Hi Vatch wondered how you were nitbgeard from you in ages. I am 7 weeks post treatment no feedingbtubes fresubin n ensure drinks plus bits of food boiled egg runny recovery very slow bags if pain still on co codomol n ora morph plus 2 naps a day 

hazel x

Hi maria mac

were you in hospital all the time for treatment ? I am in the uk it’s a daily treatment drive to hospital .

re eating I had feeding tube through nose 45 days my treatment finished 30 August had tube out 25 September.

i am drinking huge calorie prescribed drinks and trying boiled eggs with toast poached eggs soup some days I manage  and some days I don’t ,do you see a nebuliser? It helps loosen the phlegm . At night I sleep with a humidifier on constantly to create s moist atmosphere. I am lucky as I do still have taste .although I have a radiation burn the full length of my tongue which is hindering what I can eat.

I have a blog if yiu would like to read it

www.radioactiveraz.wordpress.com

insaw my oncologist on Monday his words were slowly slowly and it takes time might be 3 weeks might be 6 months everyone is different.

any questions just shout out ,where about are you ?

i

Hi 

thanks for your reply I will read your post I find this all helpful I was in hospital mon to fri as I live in west coast of Scotland. And 4 hr return trip for treatment so traveling wasn’t an option I do have a nebuliser I use twice a day should I increase this also took some soup today and did taste it, am just so desperate to be back to myself I am out walking everyday to build myself up again it’s good to chat to someone who knows we’re you tired a lot I also lost hair at the back of my head from the mask ? Did this happen to you 

cheers mariamac

Hi Maria

welcomw to the club no one wants to be in.understand re hospitalised makes sense our driver was 90 mins ea h way and that was bad enough.

yes I lost hair on the radiation line ,just starting to grow back as fluff.

are you HPV16+ or don’t you know.

hope you don’t go on dr google my consultant s first words were use cancer U.K. and Macmillan keep off everything else 

re nebuliser try doing it for maybe 30 mins morning and night , sometime I used it in the night if the secretions were really bad.

food all I can say is try things one day I could drink peppermint tea the next I couldn’t  ut that’s the nature if the illness. I rinse my mouth constantly with warm mineral water with salt in it.

soup is good but I at the moment gets most of my calories from fresubin and ensure drinks as horrid as they are they are life savers 

medication every 6 hours 2 co codomol 30/500 oramorph up to 2 x 10 ml spoons .2 ibuprofen as well 3 times a day. Before all this I took one 5 mg blood pressure table and rode my bike whenever u could I am 61 ,lost approx 18 pound so far holding steady on weight.

please don’t suffer in silence there are good people on this forum 

Vatch and newlymarried have helped me immensely.

vatch  also has a blog www.gammaraygary.wordpress.com

Take care keep in touch Hazel

Hi 

Like the  others have said everyone is different, I had the secretions for about six weeks, I had a lot of wounds in my mouth but my tumor came out through the tonsil in my mouth not shown in glands as yours wasmi finished treatment in mid April and eat relatively normally, meat being the hardestmi can eat mince and sausages and chicken legs, and the fat of steak and pork.. Lol... Always my favorite birds any way. I have to confess my taste is minimal without heavy seasoning and I am working hard to toughen up for spice as I get more from that than anything! It has taken a while and was sore at first but now I even eat chili con carne... Cheese is great it tastes like it used to... Almost.... And surprisingly potatoes taste good, I love roast potatoes cooked in the roast fat... And cauliflower cheese and risotto with parmesan... So I thought I was about done with food but six months out and I'm finding things that work for me....i miss my teeth but I'm getting used to most of them being gone, they pulled out all my molars before I started....i had some radiation hair loss but it's growing back with just a small bit missing on the primary side at the back which will be permanent now.... Can't see it with a slightly longer do... Lol....i take a water retention tablet every night as I was struggling with swelling in my throat and that has helped me a lot, if I miss it I can tell the next day! Otherwise I still get the odd ulcer and I can't drink alcohol except in very small amounts but I am feeling more and more normalxi think fatigue may always be an issue but it's not that bad, just govt in and have a short nap If you  need to, but I can tell you I slept away the first eight weeks after treatment! Ok enough, I'm having a coffee which I enjoy now more than I ever did! With lots of frothy milk! Take care, remember there is light at the end of the tunnel, and we live to tell our stories! Read Vatch's blog, so good! Oh I also have a complete dry mouth which is another thing you adapt to I  use biotene mouth moisturiser nothing else I tried came close! And I tried lots xxx also water with you at all times, Luke warm coffee or water are good and if you get caught out a bit of butter or KY jelly! Lol.. Good luck..xxxxxx

I have sent you a friend request so we can communicate privately 

hazel

Hi Paula glad taste has come back if nit fully at least partly. Hope it’s nice in New Zealand I am just getting ready for a trip to see our apartment in Spain we signed a rental agreement before diagnosis in May so been paying for something we haven’t used but hey ho small price to pay.

are you still in touch with Lynne ?

agree bioteneis good

bed for me night night