Hi Phil

Just need to communicate with someone and you're the one.  Still waiting for results for 17th Jan.  Had a letter to say I have a telephone appt on 9 Feb.  Feeling like I'll probably die of heart failure before then.  Tried to contact the ENT consultant who arranged the MRI yesterday.  Begged his secretary to ask him to give me some idea what's going on.  He knows how anxious I am.  I've heard nothing so taking that as a bad sign.  If it is my tongue, he didn't see it when he examined me (twice).

Really worry about how my glands are reacting.  Twice, I've had horrible tingling all around my neck during the night that goes up the back of my head.  Of course, I take this as a sign it's going to my brain. Also, a few short dull aches in ribs. Lungs???  I can't seem to find anyone who has had tongue cancer that has metastasised.  

I'll be taking beta blockers and diazepam when I get the phone call.

How are you doing?

Diane

Hi Diane

I am fine, I know how hard the wait is and not easy, however try not to 2nd guess yourself.  The body can do strange things when under pressure and stress. Mine did, every thought was around what this was and my body reacted to the stress of that situation. I was like a zombie, I was doing work calls and at the end of an hour call I could not remember what we had been talking about. They probably will not tell you anything over the phone regardless, will wait and tell you on your appointment, that is probably the standard process.

They will be used to people being anxious, they just follow the process and system.

Whatever I say or anyone else does, you will naturally worry until the appointment on 9th Feb.

Phil

Hi Phil

Going from feeling perfectly normal to sheer terror.  My poor partner is taking the brunt of it all.  Lost my beta blockers this morning.  Must have thrown a full packet away by mistake so major panic attack. Kind Doctor at our local minor injury unit agreed to give me a prescription to get me through the weekend. I think she made a mistake because the pharmacist has given me bucket loads.

I have a question regarding radiotherapy.  Does the beam work from outside or does it sometimes go in through your mouth?  Did your skin burn badly over a large area? It looks like a massive piece of machinery.   And do you go home after each session?  And did you have a PEG fitted?  I'm just trying to get myself prepared.  Feeling like I have a lump in my throat tonight.  I've felt that before and it sometimes goes away. Surely it hasn't grown into my trachea. Oh gawd.

Had a trial run of Diazepam yesterday to see if it makes me calm enough for the phone call.  No where near.  Going to have to add to the cocktail.  My two sisters are coming over.  They are so convinced that I have extreme health anxiety that they have gone to great lengths to organise a therapist for me after Wednesday.  I've told them all my symptoms and they're just not having it.  In fact,I actually think it's going to hit them harder than me.  I know all I'll need is a tiny bit of positivity from the consultant and I'll build on that.  I've read so many encouraging things about our amazing oncologists and the current technology and treatment.

Off to eat some more.  Trying to fatten up.  Not easy. Grab handfuls of nuts, cake, chocolate every time I pass the kitchen.

I'll let you know after my call if that's ok with you.

All the best

Diane

Hi Diane

i understand how worried you are and the stress this places on anyone.

Firstly it might be something else, but Radiotheraphy lasts about 15mins each day. You don't feel anything other than a bit of warmth in the actual process .

You  special creams to help the skin. My skin stayed ok, throughout, partly because I did everything I was asked around skincare. 

Generally with this treatment as standard you get a Foodpeg fitted. Again no one person is the same in terms of how the mouth/throat reacts to the treatment. I relied on the peg totally after about 3.5 weeks, the other person I know didn't need to use it until his 5th week.

Keep me updated and depending on the diagnosis, then let me know and you can call me

You get a mask fitted to your face, then when you have the Radiotheraphy, you put  this on and they fit it to pegs the side of the machine. It is tight but has to be, however if you lose too much weight then through treatment you will need to have another mask fitted.

I was very toned and fit at the time, around 61kg, I am only about 5ft 5. I kept my weight stable until about week 5, then it started to drop, I ended up at around 57kg.

Thanks

Phil