Hi All (update)
Saw my Gp yesterday wonderfull doctor

story so far

still not eating enough proper food
find it difficult with the 5 fortisips plus calogen, 3 125mls of laxitive movicol, water for my parecetomol and voltorol
my afternoon nap and having nothing after my 3 m mouthwash.plus 1.5 min litres of water.
By supper time my ulcers are in agony and pain and i am so full up.

dietician to put me on weekly weigh ins and if weight does not improve then may have to have nasal tube for a short while to get the protein and cals into me but still to take oral food.

GP said he would walk through fire and water to get me through this

HES PERSCRIBED
FLUOXETINE ANTIDEPRESSANT SORRY GIVE IN
SALAGEN TO TRY TO INCREASE MY SALAVIA FLOW
MOVICOL LAXITIVE
DIFFLAM
AS SALVIA ORTHANA SPRAY
PARECTOMOL
VOLTOROL
ZOTAN FOR HEARTBURN

ulcers still in mouth on tongue and tonsil, still phelgm
will keep going and try to be positive i need to be for my wife

thanks for lisening

Dave and Sue

Hey guys!
Dave, if your in such pain in the afternoon then you should keep on top with the oramorph. You shouldn't be in that much pain!

Keep up with everything you're doing, you'll get there! It's just frustrating it takes so long!
Michelle

Hi,
FIVE fortisips is alot to get down. I only managed 3-4 and that was with my PEG.
Try and replace one with vegetable soup (helps the bowel problem) and dunk bit of bread in and top up with fresh cream. I found creme caramel from m&s easy to get down or the better quality ones from the supermarket. Also had and still have a craving for butterscotch angel delight Make with full fat milk.
You can get fortisips with fibre. You have to ask the dr or dietician to prescribe them. I don't know why they don't prescribe them in the first place, as with all the painkillers too you're bound to get clogged up!
Check that you haven't got thrush (white stuff in your mouth) as that can be very sore.
Good luck!
Anne

Hi there, The medication seems to be the same for all of us who have been through this treatment.I too had trouble eating, for one I think the treatment saps out any appetite as I had none, I knew I had to eat but just didn't feel hungry. I had everyone telling me I had to eat to be strong, but I couldn't. Also swallowing became more and more difficult, even water. Unfortunatly the inevitable happened and the nasal gastric tube was fitted as I lost so much weight so quickly. You may find the best thing would be to have this done sooner rather than later, as I should have done!I kept putting it off, untill I was taken into hospital as I couldn't swallow anything, because the burns and the swelling in my throught prevented it.We have so much to contend with each day at least the eating part can be dealt with by the nasal tube.

keep strong for each other
best wishes
Tracey

Dear David
Robin is 28 days post tx and today we went for his first follow up appointment.The dietician came down to see us about 10 mins after he was weighed to find out why he has lost another six pounds since his treatment ended.The reason is simple ,and identical to your problem.Robin is supposed to have 8 fortisip fibres per day, and i have never been able to get him to take more than 6 so he isnt even keeping up with his basic requirements.By 3 pm he is fed up with the feeds and just refuses to have any more.As for your other problems Rob had an appointmet with our GP yesterday and he upped his Fentanyl patch to 75mcg and he is on break through Oromorph,he takes 15 mls lactulose twice daily and has NEVER been constipated.The Difflam burnt his mouth even more and i got him alcohol free Oraldene which is a lot kinder.He doesnt take any of the dry mouth products because his mouth isnt dry,just full of gunk.He also got thrush in his mouth which was treated with Nystan.The bottom line David is perhaps you are trying to be too brave.If it hurts so much tell them,and get the medication that will give you blessed relief.Watch the voltarol Rob was on that for two months before his radiation,and when they fitted his PEG they discovered he had a duodenal ulcer from the medication.Rob slept last night for the first time in months as the Fentanyl kicked in and today he feels like a new man.

The surgeon was very pleased with him and said everything was exactly as it should be at this stage of the recovery and in his words "So far so good.
Kind Regards Liz and robin

This message has been edited. Last edited by: cookey,

Do ask about the stronger fentanyl patches. Good for pain relief. I hated the nausea and constipation it gave me tho'. I was susceptible to nausea anyway.
Anti-depressants -giving in! Don't be daft. You do what you have to get through it all. I took citalopram and it helped me a lot. I should have gone on them far earlier than I did (I don't need anti-depressants syndrome) but I did need them.
Do make sure you haven't got thrush. It's very painful and easily treated.
I found it difficult to monitor exactly what I was having. My wife helped a lot.

Good luck - take care - Tony K

Rob has not had any nausea with the fentanyl or the morphine but our doctor prescribed stemetil just in case.touch wood he has never needed it.

Hi Liz and Robin
Im losing weight to and i am sue a nasal tube will be offered for a mounth or so to build me up and get full cals plus food
Me to are tired by 4 to 5pm of forcing food water and medicine and it starts to tire me out

The difflam alough i did not like it and it meant i could not drink for 1 hour afer plus caused a lot of phelgm was the best thing that helped me control the mucus i used it regular for 10 days and now just once before bed
Me and Sue are pleased everything went well at the check up mine is next Wednesday fingers crossed

Dave and Sue

Hang in there. We all went through the same being told the ulcers would go soon and they never seem to! I thought they would never go then all of a sudden they seem to go over about 3-4 day's. This does not mean you be eating the next day. You’ll need soft food for a while. I’ve still got problems the radiotherapy killed of more then the cancer it’s really damaged all my jaw mussels badly and I’m still on Scandishakes, I’m 5 month post radiotherapy now and back at work. What I’m trying to say it does get better really, yes there still big problems but look at last week have you seen an improvement? I bet you have!take the small thinks and you see you are going forward. Don't let the frustration take over It does take time but you will get there. You have to stay strong.

Rolf

Thanks Rolf for those words of support
Dave and Sue