My first post

1 minute read time.

Hello everyone.  It's the first time I've posted on here so hope its in the right place.

I've had cancer of the larynx a T4 tumur.  I had 10 weeks of daily radio therapy and 8 once a  week chemo therapy ( CETUXIMAB  )back in 2009 completed my treatment in august of that year. I'm now in remition and coming up to my second year post treatment.   I have monthly check ups though with the way the hospital apointment system works it ends up being every two months.  Though I have not had a check up in 4 months because thier having problems with doctors not being available.  So they keep canceling my apointments and putting them back.   I've just struggled through the treatment by my self and ever since. 

The doctors never really told me anything and I never asked just got on with the treatment.  I'm still having problems with my mouth and throat still very sore, dry mouth I use biotene jell which is not any real help, still have problems speaking and swallowing. Never been the same since treatment.   I'm at the moment getting really bad cramps in my neck muscles and for the last few weeks I have this strange swelling in my neck were my glands are.  It keeps getting bigger then goes down.  

 I've had a few cancer scares since post treatment [Strange lumps ]which proved to be nothing to worry about.  They checked using ultra sound scans.  So I'm thinking its probibly just the side affects.  Is all this just the normal thing with side affects post treatment? Oh and my taste buds still dont work some foods  just dont taste of anything well most things don't taste the same as they use to sadly.

Anonymous
  • FormerMember
    FormerMember

    Hello Simon,

    Im a carer for my husband Dave, he too is 2yrs down the line and has had the strange lump appear also to find out it was nothing.

    Due in again this coming tues for another ultrasound and needle biopsy as another lump has surfaced only this one feels different he said (hubby) heres hoping for nothing again.

    I totally understand your feeling of abandonment, once treatment is done and your on 6-8 wk appointments it seems your put on the back burner. Dont think that's true really,  I think that from diagnosis through surgery, chemo, radiotherapy (which seems a never ending trip to hospital) things then calm down, but you do feel when things are not going so well they dont seem to be reacting with the urgency we feel we should get.

    Dont let them fob you off with delaying your appointments, insist you need an earlier one not a later one if they try that next time.

    I think you have done fantastic to get where you are now on your own, Dave has me to battle the appointments as he would cave in to their request too, but i am a bit of a bully ha ha.

    The internet can be helpful at times but I have found the online community and chat room help so much more.

    Continue being strong and I hope for better days for you.

    Shaz ((((((((X))))))))