Eating problems during treatment, and potentially beyond

Hi Houditoo and a warm welcome.

This is quite a problem for a lot of us and I personally suffered with a lot of nausea

Luckily (sic) you are still in treatment so you can ask your radiographers and chemo nurses for help

Are you on any anti nausea medication? I know you do get things with chemotherapy but some drugs are better than other.

Have they not offered you a nasogastric tube?

Mine was a life saver as everything went down it for weeks and I managed to lose very little weight at all through treatment

I'd be straight back to them asking for one. It takes a few minutes to get down and the process is unpleasant only fleetingly. I'm amazed you've got this far without one. You need lots of good quality protein and calories to heal properly. 3000 a day is not overdoing it.

Please ask.

Hazel  RadioactiveRaz will be along soon I guess to chip in. We both lend a little extra support on a small WhatsApp group to fellow sufferers and we are helping one lady in particular who got into a real pickle without proper nutrition.

Best of luck and let us know how you get on

And it does get better

Morphine is pretty rubbish for making you feel sick too....are you on enough laxative to cope with the morphine?

How much mucous do you have? A lot can make you gag.  If there's a lot maybe a nebuliser might help and you might ask your team for some Carbocysteine which is a mucous thinning drug available on prescription

Hi this is Hazel aka Radioactiveraz I am 27 month post treatment for tonsil cancer with several affected lymph nodes. I too had 35 radiotherapy sessions and 2 out of a planned 3 chemo sessions. I agree with everything Dani aka Beesuit has already said. Get to see your dieticians have they not mentioned n g feeding tube ? You need to be able to get hydrated and nutrition into you. Yes in a wzy tecivery can be harder than the treatment everything is still working away in you. It is a case of hunkering dien most important kerp on top of painkillers and of course laxatives. Are you taking enough painkillers I was in 6 ibuprofen 8 x30 mg cocodomol snd uo to 40 mil of oramorph. Yes it’s hard but if I can do it anyone can   Eat I g can be problematic fir a giid while but you do learn to adapt . I have a blog details below it may help you. I also had a humidifier nebulisers and carbusistine for the dreaded mucus. 
Aany questions just ask wecare a tight knit grouo on here. 
hazel xx 

Thank you for your advice.

I'm currently not taking any pain killers. I don't want to be  show-off but I weirdly have no pain when swallowing at the moment (5 days now!) I'm sure it will reappear at some point.

My eating problem (at the moment) is due to the salty gloop that is constantly in my mouth, that seems to increase whenever I try food or drinks. It is making anything I try to swallow taste like thick sea water and just makes me gag.

Having said that, today I have managed peaches, rice pud and crackers with cheese spread. Lucozade is the least offensive liquid to drink at the moment. The slight fizz seems to clear the gloop of my tongue.

Once in situ, how awful is the NG tube? Yesterday I was pretty close to giving in and saying just shove it in, but then today my SALT said it was better if I tried my hardest to avoid it. Does it hamper recovery time?

So many questions...

SALT said what? 
I’m amazed at that. 
Proper nutrition encourages speedy healing and a nasogastric tube enables that proper nutrition. 
You can’t feel it in situ 

I had mine in from my third week of treatment till around six weeks post. 
I bet your SALT team are popular with the dieticians. 
Where are you being treated? 

Hi n g tube couldn’t feel it  fir me it didn’t hinder recovery if anything it aided recivery took away the worry of eating drinking and meds. Mjns was in fir 6 weeks  out week 3 of  recovery flew to Spain in week 8 and rode my bike week 10 . Without the n g tube I am sure recivery would be longer. I woukd speak to dieticians not SLT team but we are all different. 
te the gloop have you a nebuliser ? Try soda water as well as that cuts through the gloop 

 Hope this helps hazel 

RadioactiveRaz said:

Try soda water as well as that cuts through the gloop 

Diet ginger ale is supposed to be good too

Hi Houditoo

I can understand why  SALT would rather you tried to get through your treatment without the NG tube.  My entire team were of the same opinion.  It's not so much a matter of the NG tube prolonging the recovery period but that they're of the opinion that to continue to eat helps to keep your swallow function operating.

I didnt have a feeding tube during rt and I did lose a lot of weight but just about managed to get to the end without having one fitted.  I'm sure the dieticians would step in and take the appropriate action if they thought you're losing too much weight and it's in your best interest.  They were certainly on the verge of doing so with me.

Have you had any advice from your team about the mucus and sickness?  I was extremely fortunate that mucus wasn't a side effect I had a huge amount of trouble with but my father in law did when he was having treatment and found a nebuliser was a great help.

I really wish you all the best with your continued treatment.

Linda x

LindaWT said:

I can understand why  SALT would rather you tried to get through your treatment without the NG tube.  My entire team were of the same opinion.  It's not so much a matter of the NG tube prolonging the recovery period but that they're of the opinion that to continue to eat helps to keep your swallow function operating.

Hi Linda

that's really interesting and just illustrates how different hospitals put a different emphasis on recovery. 
Maintaining your ability to swallow is crucial 
My symptoms came crashing down over a weekend at the end of three weeks treatment and my support team assured me that if I did my swallowing exercises as instructed it made no difference how I was fed. 

I have had absolutely no trouble swallowing after recovery but you hear some people have significant stenosis. 
One wonders whether severe muscle fibrosis would have occurred anyway. 

The pre treatment placing of stomach tubes was routine in many places before Covid.

 
I wonder how we are to make an informed decision? 

Well I've had a tube put in.

I did feel a bit like I had to give a reasoned debate as to why I thought it was best for me (kind of odd when it is something you would really rather not have).

Anyway, a bit uncomfortable going in but, once the guide wire was out it, it's not so bad at all. But the relief is immense. I'm not stressed about trying to shovel enough food in orally now, and that was really getting to me.

My team have sold it more as a supplementary way of feeding and have said I should try my best to still eat and drink every day.

So, fingers crossed, this will get me over the final hurdle, into single figures now, 9 sessions to go...

Thank you for you help and encouragement. I'm at the Leeds Cancer Centre, their care has been brilliant.