8 weeks Post Treatment and Frustrated

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My husband is 8 weeks post treatment for stage 4 Squamous Cell Carcinoma which he has in his tonsil and lymph glads.  His recovery as we  expected has been very  slow mostly  being two steps forward and one step back. He is tube fed and following his recent swallowing assessment his Speach and Language Theapist was very keen for him to start to try to begin to eat small amounts of soft textured foods.  My husband was very eager to start this  although he knew it was not going to be easy.   However he has found the pain following eating which gets worse throughout the day so incredibly painful that  he has been unable to sleep at night with it. We immediately  contacted his team for advice and they explained this is normal and have  temporarily increased his medication which includes putting him back on Oramorph. They explained how important it was to continue trying to eat and told us that  it will be between 3-4 months while his throat heals due to the severity of his Radiation burns and the stiffening of his throat muscles.  He is feeling so low and frustrated as a result of this now and said he feels he will never get back to normal eating.  I was wondering how do others in this situation cope with the frustration and how did you get through this.  We both just need some hope that there is a light at the end of the tunnel. Thank you for reading. 

  • Hi

    Sorry to read about what your husband is going through and the effect on you both. Pain is often a problem but then often the painkillers create a different set of problems. I have a chronic back condition and (for the moment) I am prescribed Naproxen but then I have to take another tablet to try to protect my stomach against that - sometimes I think I must rattle.

    Perhaps the positive I pick in your message above is "two steps forward and one step back". Really glad you got in touch with his support team and great too that you reached out on here - there are bound to be lots of people in exactly this position and sometimes it helps us all feel that little bit less alone.

    <<hugs>>

    Steve

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  • So sorry to hear your Situation. I've had Similar problems. I now have pegtube feed, Can no longer Swallow. I'm alive,but

    Miss eating so much. I cannot socialise any more, which has

    • Affected my marriage. Hopefully your husband will get better.
  • Hi src60

    Thank you so much for your reply.  Yes we definitely agree that the side effects from medications and treatments cause addional problems.  My husband  has never been one who likes taking tablets unless he really has to but as a member of his team told us he really needs to increase his meds now  to help him get through this.  Thank goodness  he is now finding the extra meds are helping to make eating more bearable. Thanks once again for the comforting words. I am so glad I found this site.

    Many thanks

    Caroline (Aka Welshpony) 

  • Hi Superman. 

    Thank you so much for the reply.   It is so helpful and reassuring to hear from others who are going through this awful experience. I am so sorry to hear you are having similar problems it is so hard to experience and so  hard to  witness someone going through this. I agree that not being able to eat or swallow has such an impact on someone's life. Thankfully since my husband's meds have been increased he is finding eating a little more bearable.

    I have learnt one thing from seeing my husband go through this that the phrase "you don't know what you have got until  it is gone" definitely applies to being able to swallow.  Many thanks for the reply once again I really appreciate it. 

    Kind regards 

    Caroline (AKA Welshpony)