Hi All
I met with MDT team today ... whilst sat waiting for my appointment, my phone rang and it was the hospital ,( that I am sat in lol) wanting to book my mask fitting... so this is now booked for next Wednesday followed immediately by a CT scan with contrast .
MDT told me the ins and outs of what was to come and also advised that my PEG fitting would be next Thursday the day after my mask fitting. They then deem treatment will proceed approx one week on ,, so that looks like May 3rd, due to bank Hol and May 2nd is my birthday .. so I will be trying to have a birthday weekend but its hard to get into any kind of birthday spirit this year ..
Had my weight and muscle mass taken , presently 70kg and was told I had a very good muscle mass.. not sure how , I haven't run/swam or carried any of my normal fitness since Feb part from our weekend strolls.
Anyway , still no official grading or written diagnosis , I guess that follows once my PET scan is over with .. so although things did seem to be stuck going nowhere, today seemed like one mass of progress.. I am elated and secretly quaking in my boots.. lol
Jo
x
Thanks Dani - oddly , I was thinking that I had read somewhere here that someone noticed relief after their very first treatment but then I was questioning my recollection but you have just reaffirmed it . 
I am assuming the location of this cancer causes pain and discomfort that other cancers do not give , mine being exacerbated by the opening up of the biopsy site and slow unnatural healing process
x
Okay , wow - thats a huge difference in dosage - no wonder I am suffering. There was me thinking I was being a wuss and not handling things well .. 
Exactly so they can put it up & I’ve gone up in oramorph , I felt terrible going up on that incase it had no benefit once treatment started but the nurse said some people are on 1000 
xx
Oh really , I thought it would be there all the time , even after treatment , I’ve had it since last June with no let up .Some days are worse than others but constantly there , so are you saying 2-3 weeks in from treatment it should nearly go ? Xx
Not quite. If your cancer is growing onto sensitive areas like nerves it will hurt. (I never felt mine because there are no pain receptors at the back of the tongue but what did hurt was the messing about with the biopsy)
The RT doesn't really cause much pain if any in the first two weeks. Scratchy throat, maybe at the end of week two but what it does do is start dealing with the cancer so if enough cancer is destroyed in this first two weeks it should hurt less. Of course that area will begin hurting less and less as the cancer shrinks but it's replaced by the pain of the treatment....but that goes in the end
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I am assuming the location of this cancer causes pain and discomfort that other cancers do not give , mine being exacerbated by the opening up of the biopsy site and slow unnatural healing process
Yes it depends where it is and whether there are nerves there.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Exactly so they can put it up & I’ve gone up in oramorph , I felt terrible going up on that incase it had no benefit once treatment started but the nurse said some people are on 1000
Yes, don't worry you can take a heck of a lot of morphine and it keeps working.
I managed with 15mg five times a day plus 20mg long acting night and morning. As soon as I started waking to top up oramorph in the night I got MST continus which is expended release.
The more you are on though the longer you have to come off it
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Wow , that is swift action , My biopsy alone took 5 weeks for results - the anxiety during those times was beyond anything I could have possibly imagined ..
