Hello All

Thanks for dropping in Sue.  I hope all is well with you .. 

I had a chat with therapy nurse today about the state of my mouth , she reassured me this was on track with most patients and to now increase my mouth rinses to 6 times a day and gave me soluble paracetamol to take every 6 hrs split half way with ibuprofen .  More gelclair and recommended to use 30 minutes or so before eating .  I did try this at lunch time but had to quit and PEG a fortisip instead  .  My right cheek tucked against upper teeth is so very tender along with the right side of my tongue .  Bizarrely the left is not as bad but the rubbing of the areas when trying to eat is too eye watering .. I can just manage fluid if i take it slow .

PEG rotation appt was cancelled today and now having rotation carried out when I have my H & N clinic thursday ,  That will make rotation a week late

Wow 3kg loss - I can only suggest you eat  to your hearts content Al , all the stuff you love this week  . I actually enjoy smelling food as it reminds me how it should taste.  It is so odd watching family eat , the little things that you take for granted.  
 

Jo

x

Hi yes we don't realise how social eating is I used to sit at table with hubby while he was eating.  Know many who go into another room while people were eating. Am sure the peg will be fine. Yes sounds very like me I list my bsck wisdom tooth into my cheek for months. Just keep plodding on. Just had 9 weeks away so back home now. Life's hard but someone got to do it xx lol 

hugs Hazel 

Hi all,

Today is my 10th radio and so far I have managed to avoid any mouth ulcers....I'm sure they are on their way tho. I felt well enough to drive myself to and from radio yesterday and will do the same again today and carry on doing that until I'm unable.

I'm finding that everything tastes sweet and leaves a sickly sweet after taste in my mouth....even plain water....very strange. I still love watching programs like Man v Food and find my salivating like crazy! ....food *** :laugh:

I had a call from an oncologist yesterday asking how I was coping generally....I asked her how/when would I know if the chemo/radio is working....she said not until they do a scan 3 months after the last radio!.....I was very surprised....I imagined they would be monitoring it weekly or something (Hazel can you shed any light on that please?).

Jo I hope those bloody ulcers settle down soon....ar you feeding with the pump or just usung the syringes?.....I picked up a crate of food supplements yesterday after radio but as I am still able to eat normally hope I won't need them fo while.

PEG rotation gets easier for me each day....freaked me out at first but doesn't hurt at all.....just freaky.

Also have a sheet full of swallowing exercises to do but I"ve been a bit lazy....need to get on and do them now before the pain starts kicking in.

Al

x

Hi I had my pet Ct scan 17 weeks after treatment finished. The main reason is if done  too soon all it will show is hot spots which can't be differentiated from actual cancer. The treatment continues to work for at least b4-6 weeks after we've had our last blast. I was told all this right at the start and it does make sense. Trust in the treatment head and neck cancer do respond extremely well to treatment it's so brutal that why it works. 
Good luck to all of you for this week expect things to start to ramp up soon I too am or was a foodie. 
i watched 8;series of Australian master chef pure torture at. 60 episodes a series but kept me quiet 

Hazelmxx

Glad you are holding out Al, long may it last .

I now have a new issue whereby I am throwing  up. I started to feel nauseous yesterday afternoon and mucus has arrived , It is bloody vile

I tried to take pain relief at 2 am and it came straight back up and as now have no pain reflief  in me , eating by mouth it out so I  used my peg , 10 minutes later up it all came .  
 

Radiotherapy team this morning  told me to start taking anti sickness again , whether i can keep it down , we shall see ! A little worrying as if this persists, I foresee me being  admitted into hospital 

I feel like a walking disaster

Jo

x

Hi Hi the dreaded mucus. Flat soda water or if yiu csn try it normally. Nebuliser ivwas 6 times a day at least and not nice but fingers into  mouth to pull it out not pleasant. Copious amounts of tissues and a carrier had weed my constant companions. Later I was prescribed carbusistine to thin it down dud it work it helped but like everything else it's time. Maybe the feed isn't suiting you they can change it ask for ensure or fresubin   

hugs Hazel 

Oh my god, Jo that sounds awful!, its just not fair! :angry: I'm praying that things start getting better for you (and praying that I don't get that bloody mucus thing!)

Hazel, thanks for the info about after treatment...it all makes perfect sense when you explain it like that.

Al

xx

Hi Jo,

How are you feeling?.

12th Radio for me today and the pain has kicked in....I count the hours to my next pain killers :laugh:

Mouth alternates between dry as a bone to snotty sweet salive which makes even water taset slimy....whoop whoop.

No mouth ulcers as yet. Feeling sorry for myself today adnd hating everyone who has a normal life.

Hope you have started to get a bit better.

Grumpy Al

xx

Hi Al I can sympathise with you Things will start to ramp up . I had a chart for my pain med s if the gaps too long you can ask for oramorph which yiu take in between the co codomol . For night time yiu can ask for MST which us a long lasting morphine many get a full nights sleep with that .water does become difficult I couldn't and still can't drink tap water it's bottled water for me. 
Whatever you do make sure yiuve plenty of pain killers as I used to fine Friday nights it all ramped up. 
Hazel xx