Any help on eating and drinking from week 3 of radiology??

Hello Kazzystar, I'm sure others with more knowledge than me will reply soon but it sounds as though you are ready to start using your PEG. I found well cooked runny porridge one of the least painful things to eat, with cream for the calories. I was advised to rinse my mouth often with a homemade solution of salt and bicarb, which helped to avert mouth ulcers. Remember to take your Laxido or similar to avoid constipation from the Oramorph - believe me, you want to avoid that!

Hang in there - one day at a time and it will all be over soon. Sending love & luck,

Catriona

Hi Kazzystar 

There is no reason at all for you to lose much weight. You need 2500 Calories a day  and it's time to get them in through your tube. When my mouth started to get the way you describe yours I abandoned eating entirely and for nearly eight weeks all my nutrition and meds went into my NG. Ask your dietician about pump feeding. You can do that in the day with your food in a rucksack or at night which is what Idid. It left the day free from feeding 

I took paracetamol every four hours with oramorph in between so I was taking something every two hours. When I started waking in the night to top up the morphine I was given long acting morphine to take morning and night.

Honestly......this was a complete game changer and held background pain at a manageable level

The green stuff is Difflam, yes. It does have some anaesthetic properties so if you are trying to swallow soft food gargle with it ten minutes or so before you try. Frankly I gave up. I didn't see the point of all the pain if I could eat without swallowing....but that's just me.

Ask about Gelclair and or Caphosol mouthwashes to help protect your mouth. I had them both. I'm not sure whether they did much but it certainly helped me keep my mouth clean which is vital. See if you can keep going with an electric toothbrush wit a gentle head for as long as you can and definitely rinse your mouth out really well after fortisips.

Check the calories in your fortisips. I think you might be needing six or seven a day. If you go on pump feeding the stuff comes in larger bottles or bags.

Best of luck....head down as it's hard work from now on

Hugs

Hi Kazzystar, yes hopefully the dietitian will advise you to start using your PEG for overnight feeds. Anything that you can eat load it up with butter and cream so it is high in calories, milk puddings, custard, poached or scrambled eggs, anything that can go down easily. You're halfway there now, that time will quickly go, then you will be on the way to recover. 

Ray.

Hi Kazzy

Week three is normally the start of the worst of the side effects of ChemoRadio, PEG tube becomes a life saver for many as eating becomes problematic, dietitian and CNS will keep you right on how to maintain your weight...different levels of severity for everyone.

Peter

Thank you everyone for the support - I just felt that giving up so quickly on eating was another fail but I have to turn my thoughts back to positives and your help and words are giving me that push I need. I am seeing the dietician today after radiology so I will ask for the next step with peg feeding. I don’t want or need any additional worries right now and rather than it being a fail, I should see this next step as me taking back a little control over what is happening. I probably also need to increase the oramorph to during the day but it makes me feel like I’ve been on the vodka when I take it at night. But again I have to stop resisting these necessary steps to my recovery - because I will recover and this is just some little blip in my long journey if life. This too shall pass - I think I might get that as a tattoo when it’s all done, something to look forward to :). Again - thank you for all your support you really don’t know how much this forum means to me xxx

Kazzystar

The simple answer is that you are prepared by having the PEG in already.  Please use it. Get liquid meds,  hydrate through it and in the short term you can put Fortisips through it although I found that a messy process and far preferred the pump feeding.

I found that I was hit hard for a couple of days post each chemo session and could not eat or drink so the PEG was used then.  Eventually after my last RT session I went onto total PEG use for around 4 weeks before starting to eat and drink again.

Hi Kazzystar.. it's been said before but get your baseline of regular paracetamol, zomorph slow release morphine, and oromorph as and when.

MAKE SURE you take your laxatives because morphine will make you constipated, and you don't want to be admitted for opioid constipation... trust me, you don't..

get a pump to feed overnight.. one thing less to worry about during the day.

try to at least drink, and if you can get some soft food down occasionally even better.. but the overnight feed has you covered..

caphosol or salt / bicarb for rinsing your mouth

baby soft toothbrush and oranurse toothpaste.. gentle cleaning for teeth/gums

hopefully you can keep on top of it all.. 

Kazzystar said:

I just felt that giving up so quickly on eating was another fail

No

Kazzystar said:

rather than it being a fail, I should see this next step as me taking back a little control over what is happening.

Yes

Kazzystar said:

this is just some little blip in my long journey if life

Yes and more yes..... It will pass. It is something that is happening TO you not who you are. Hugs

Sending hugs and prayers x

Hi Kazzystar,Had Radiation more on left then right side though.I ate through my treatment.If you are going to eat I highly recommend just plain food,I didn’t add anything to it,If it was steak I just had steak,If I had noodles just boiled them in plain water(broth will make your throat burn).I chewed my food a real lot and learned chewed my meat then chewed a wide noodle with it and swallowed with a sip of water it didnt burn so bad.scrambled eggs never burned and oatmeal was mainly scratchy.For me I ate to recover as fast as possible,I didn’t want to go through any therapy.I wish you well, as I read more on this site there are so many that have recovered and are doing well and you will to.