2 weeks into treatment and worried about husbands eating

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My husband has now started his 3rd week of treatment and is really struggling to now swallow and eat anything.  He didn't eat anything for 4 days last week and was in hospital for 2 days, where we thought he would get a feeding tube, however his oncologist didn't think it was necessary at this time as he could manage to eat a small custard and could swallow ok.  He was sent home with lots of Ensures, which he has been taking twice daily.  He is really struggling with mucus and I can now see him in pain when he is trying to swallow.  I'm really worried, as he is fading away before my eyes and I know there are another 4 weeks ahead of us of this treatment.  I know there is not a normal as everyone is so different, however is this typical to start feeling like this after 2 weeks and is there anything at all that will help with his mucus.  Thank you

  • Hi Bethie1 If he isn't eating anything at all, and not drinking the Ensures. Tell his team tomorrow when he goes for his treatment. You may have to push a little to get them to give him a feeding tube, he can't go on having nothing. They will hopefully fit him an NG tube.

    Ray.

  • Hi Bethie

    Push for feeding tube procedure it will certainly help hubby's recovery.

    CRT... 5 weeks in I ended up in hospital due to rapid weight loss....16kg in 2-3 weeks...I had a PEG tube fitted prior to start of Chemoradio...eventually I could  not swallow and had absolutely no interest in feeding....Nursing team pump fed me daily and overnight in ward ... Jevity protein feed .....12 days later my weight had stabilised and I was discharged...dark days but things do improve.

    Caphosol should help with mucus...Mucus is yet another of many issues that patients and carers have to deal with.

    Take care and best of luck

    Peter

  • Hi 2 ensures isn’t anywhere near enough 6/8 minimum. Push for tube shortly he may end up on medication which if he can’t swallow he will be in trouble. Tell team straight away tomorrow. No magic remedy for mucus just constant spitting and in my case I was pulling out with fingers. Try soda water ir flat Diet Coke it can help disperse it. But once it starts it’s there for a while. It does go as quickly as it came but rarely until weeks after treatment finishes. As fir a nebuliser it helps plus I bought a humidifier for bedroom. 
    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Thanks Ray, I will do.  He needs all the calories he can get just now.

  • Thanks Peter, that sounds like a hellish time for you but it is so good to read that you are back holidaying and golfing.  There is light at the end of the tunnel...it just seems a long scary road at present.

  • Thanks Hazel, I'm going to speak to his team today to push the feeding tube as yesterday it was only one and a half ensures with no other food at all and diet coke to drink. 

  • I fail to understand the logic of some hospitals and Drs.  They seem so adverse to allowing people to manage their feeding in a manner that works for them and ensure the patient manages this process as best as they can.  I made it through the 6 weeks of treatment still eating - it was painful but I am stubborn.  The Drs wanted me to use my PEG from week 3 but understood that I was managing by using the PEG when I needed and oral intake otherwise.  I think there was only one time during treatment when the PEG was vital to keep me going for 24 hrs until I could regain control (Chemo caused that).  It sounds almost criminal what they are doing to your husband.  Also remember the treatment continues to build for 2-3 weeks after the physical treatment ends - I certainly needed the PEG then and still use it.

    I am not convinced the Drs really understand what happens to us.  It may be worth asking his dietitian - I saw mine each week and she was much better at sorting my day to day issues and would sort me out between appointments if need be.  She still does!  If you don't have a contact number for the dietitian get the radiographers to make contact tomorrow and get it sorted whilst at the hospital, even if you have to wait.

    For the mucus (I did not have too much of a problem) I found that bubbles worked well at helping to clear it.  I had effervescent paracetamol and in the end went onto sparking mineral water as this was the only water that did not taste of the sea!  It worked for me until the ulcers became too sore for the bubbles, but by then mucus was the least of my issues.

    Peter
    See my profile for more details of my convoluted journey
  • Thanks Peter for your reply.  I know, I don't think the Doctors fully appreciate what is happening to your bodies during this treatment....the radiographer got quite stern with my husband and told him he had to eat, when he physically can't.  We are going in later today and I am going to speak to the nurses to see what we can do.

  • Dear Bethie1

    So sorry to hear how much in pain your husband is. I think it is unacceptable for the radiographer to be stern with him. The side effects of this treatment can  really be terribly painful. We all know that we need to eat....pointless and surely not helpful to remind your husband what he needs to do. Shocking.  He is in pain and his medical team should do their outmost to help me and support him to make his as comfortable as possible, having a tube fitted is one of them. I had mouth ulcers at the beginning of my treatment and could not swallow either Thank God I had a peg as it was a life saviour. I would definitely carry on putting pressure on the medical team. 

    In the meantime, is your husband taking his pain killers a bit before he tries to drink/eat anything?

    Sending you lots of positive vibes. 

    Fab1

  • Thanks Fab1 - yes, he is taking his painkillers regularly.  I know, I think he feels that until you are going through the treatment it is impossible to know how it feels to just be unable to eat.  He gets weighed tomorrow and then meeting with dietician so hope to get a plan in place going forward.