New Mask to be made - anyone else ever experience this once treatment is started?

Thanks Hazel , I’ve been trying to find ginger cake but nobody seems to have it now I want it , I have got ginger soda would that be ok but flat ? Xx

Yes that’s my fear , getting early side effects then having weeks to go & after treatment hope we cope Jo xx

Hi yes flat diet ginger is  Try nearest Tesco they do a Jamaica ginger  cake. Or I got my first ginger biscuit from costa on the hospital coffee shop. There’s ginger nuts biscuits in most suodemadkets  whike you can eat just dunk them. 
side effects there’s no time limit in them starting I as i said  was  the 10 th day so on my 7 th treatment   What you need to remember the teams are there for you if you need pain killers do not take them as hoc once you start you keep on top of the pain relief by rote. Increasing it as necessary it doesn’t kill all the pain but makes it manageable 

Hazel xx

JustJo said:

Think I was just hoping for a little more time .  Side effects so soon makes me worry about how bad it is going to get having so much more therapy left to go

Hi Jo. Some of us get ulcers and pain kicking in early. I was feeding by NG tube by the middle of week four but I can tell you that once you get your pain killers right the pain sort of plateaus. I never really got worse after mid way and I think it’s the same for a lot of sufferers. 

Oh Dani I hope so for us newbies thanks for that xx

Try not to second guess how you are going to react. All our roads are different but we all get there. Don't frighten yourself that you won't be able to cope because you will...you have to because there is no choice

Hi Dani

Were your NG feeds Fortisips? These just don’t seem to fill me up and my tummy feels empty and wanting more to the point I feel nauseous with hunger .  I am reverting back to my home made soups , they even have ‘some’ taste .  But it takes a lot of soup to fill me as there is no bulk going on . 

Can I ask how you used the gelclair - I have been given only 9 sachets and they told me to  dab the gel from the packet on to the ulcer , but the location makes that pretty impossible ,  So I kinda smear it around my mouth and try and manipulate it gently to where the pain is but I did read the sachet says to mix with water but that means I will run out very quickly .. at present I am using a food bag clip to seal the sachet back up .. 

Aly , was your first Chemo today? 

x

Hi Aly what I used to do was mix the sachet up with water then rinse round my mouth and then spit it out. That way it coated all my mouth cheeks and tongue. 9 is rather mean ok it’s expensive but I used to get a box of 21 every I asked for it was  issues no problem. I could make a sachet last all day if I was running short but 9 if you need to do it 3 times a day you’ve got 3 days worth ! I used it for at least 2 month and my gp will still prescribe it if I need it. Yes I also used a food clip if I didn’t use a full sachet. Are yiu taking enough fortispis my feed was ready made for tube at 1500 calories. How  many fortispis s are you putting in peg ?

Ask for at least a weeks supply ie 21  sachets of gelclair then ask every week  aAt times i despair are you at a cancer centre ?

Hazel x

JustJo said:

Were your NG feeds Fortisips? These just don’t seem to fill me up and my tummy feels empty and wanting more to the point I feel nauseous with hunger .  I am reverting back to my home made soups , they even have ‘some’ taste .  But it takes a lot of soup to fill me as there is no bulk going on

Hi Jo. Nutricia supplied me with their feed in litre bottles. I clipped one on at night. I was supposed to have the whole litre but only ever managed 500ml. It’s the same as Fortisips but just the one nondescript flavour. 2 calories per ml. 

Hi jo all went well today with chemo & radiotherapy, they really do listen & care , I’ve come home with about 4 bottles of anti sickness meds xx