Three weeks post Chemoradiation and struggling to drink a sip of water let alone anything else

Hi MWCG  

well done in getting through so far. You are indeed overestimating the speed of recovery. 3 weeks is really early. The radiation residual effects are only just subsiding. 
I was managing very soft foods at six weeks but really couldn’t have done it any earlier. Have you been doing your swallow and jaw exercises throughout? 
The mucous is inevitable but it does get better. I managed to shift some of it by steaming my head over hot water but others found a nebuliser more useful. You can try something fizzy too. Diet ginger ale or soda water  

There is a drug called carbocysteine which some doctors prescribe. It thins the mucous. 
Keep trying. That’s all you can do. 
Your dieticians won’t take that peg out till your weight is stable without using it so just take slowly and you’ll get there. 

Good evening MWCG, do you have a dietician and speech therapist who should be able to guide you, if you are not seeing either the dietician or speech therapist then maybe your consultant can sort it out for you. They might want to do a swallow test to see if there are any problems. You are still in the early stages of recovery so keep up with the positive attitude as i strongly believe it helped me get through it all, i know what its like when you cannot swallow, also the phlegm, mucus, etc does not help with the swallowing, you will get there it just takes time. Good luck with your continued recovery, take care.

                                                                                 Chris

Hi As  Dani says you may not think it  but it’s early days for you in recovery. Have you been doing swallowing and jaw exercises in still do them now at 6 years post radio . I had the mucus for approx  3 months I used a nebuliser up to 6  times a day I resorted to,pulling the mucus out with my fingers yes it’s revolting but needs must. My ng tube was my lifesaver , I maintained swallow to a degree throughout treatment but yes I too was unable ti sip water for a period of time Take it slowly and it’s a marathon not a sprint. Boig below might help. I had carbusistine to help thin the mucus , also with soda water to help disperse it by swilling it round my out and trying to gargle. 
Soluble aspirin helps if you gargle with it as well.

Hazel 

My husband had exactly the same problem and saw a speech and language therapist. She observed him swallow and encouraged him to swallow twice in quick succession after a sip of water and that stopped him coughing. She also recommends that yohurt is easier to practice with than water as it’s thicker. 

Worrylo said:

swallow twice in quick succession

I'd forgotten that. It's what I worked out on my own and did it naturally. Sometimes even three swallows were needed.

Something thicker than water is the trick if you are aspirating. 

How is your husband now Worrylo ?

Hi Beesuit thanks for your message. Just finished week 7 post treatment. He is gradually  building  some of his strength back and he walked nearly 5 km this week but still has several naps during the day. Pain is still quite bad although his oncologist advised him to come off morphine so only taking codeine and paracetamol now. He is still anxious that his neck lump is still present and clearly visible. We see his team on Wednesday for a review and pet scan sometime in July. X

Sorry to hear this - but like others have said. Totally normal - it takes a long time to be able to swallow. I couldn’t even swallow my own saliva. I used boxes of tissues and was spitting out all the time - horrible! 
it will get better but it takes a while. 

Keep your chin up - it will get better. 
Rachel x 

I was still tube feeding using my PEG at your stage.  I still have my PEG in now as it was agreed it would not be removed until after a clear post treatment scan (which I got last week).  I was using it for bulk hydration for around 2 1/2 months until I could swallow easily.  I can still really only take single sips, but continual drinking is slowly coming back. I am now easily eating solid foods abet soft ones.

It is a long game, this recovery.  Best you contact your SALT (speech and language) for advice and a check up if you are worried - even if just for professional reassurance this is normal!  I have seen mine every 3 - 4 weeks during recovery.

Worrylo said:

He is still anxious that his neck lump is still present and clearly visible.

Some of these take weeks to disappear so don’t worry. 
well done Mr Worrylo. He’ll get there. Xxx

Thank you for your advice. My take out is whilst it’s still early days and I shouldn’t be too ambitious, just yet. Also solids, like ready break etc might be an easier start than water in the swallowing stakes. I will try the double swallow too, but right now I am more likely to gag and be sick, so I’m almost better off not rushing it.

I have tried carbocysteine through the peg, only to be told by the very helpful pharmacist, you have to swallow it! Will keep trying until it becomes easier. Am now worried re PEG as like others, oncologist won’t remove until after the first scan. Naturally, I suppose, my mind wanders to, what if this hasn’t worked…I keep pushing it away but inevitable I think…

I have family holidays booked in two months and was so hoping to be able to eat and drink but fear this might not be the case…it’s my goal right now, so let’s see. I need that PEG gone but if I cannot swallow water or eat food now, there seems little hope.

I really appreciate you support, advice and experiences, it helps me shape my goals a little more realistically.