Things are on the move !

Hi Jo I went for my first oncology appointment today at the cancer hospital, they were so nice & so reassuring, they wanted to do my mask today but the scanner was broken & like you I’ve been getting nowhere fast with appointments but on the way home they rang to say an appointment has been made for tomorrow for a cat scan , I will soon be getting appointments for my peg to be put in , mask fitting & hopefully treatment to start in 2 weeks , chemo & radiotherapy first treatment , then radiotherapy then week 4 chemo & radiotherapy then last 2 weeks radiotherapy, I too am so scared now , it’s moving so fast but I want it done & over xx

You’re on your way to getting fixed. A day at a time and soon the weeks have gone. We are all here with you. 

Hi both if you as Dani says one day at a time. Once u had my treatment dates I got a calendar abs ticked the days off. I had 35 radiotherapy   Before you know it the end will be in sight.

We are all here for you  any questions.

Hazel 

Jo you now have a plan and can work your life around that.  I suspect everything will become a whirlwind now, but you will get through the treatment and you know we are here for you.  BTW I never bothered to find out my grading score.  I'm not sure it really mattered to me then or now.

Hi Aly

Well,  it really does look like we will virtually be side by side on this , Aly.  which is oddly re-assuring . My team were lovely too , they didn’t  make me feel like there was a time limit to the appointment .  What did you decide with your teeth in the end?

Did I recall you mentioned you take Oramorph? I am now in quite some pain and codiene doesn't seem to work , speaking hurts swallowing,  eating  - its seems to get worse week by week  I am not sure if it still from the biopsy or the cancer , i would assume it is the cancer 

Jo

x

Yes I know what you mean Jo , I’m keeping the 8 teeth I have left as someone put on here they had all their teeth out & regretted it as they got jaw infection anyway , I will sort them out after , I need something there as I’m going to look bad enough as they are doing it on my jaw at the sides , bang goes my modelling career! Hahaha my mouth doesn’t sound as bad as yours Jo you poor thing & thats before treatment , I can still eat & talk they did say it was cancer pain , some days are worse than others which is strange , I take 60 codeine 4 times a day with ibuprofen the express red liquid capsules & 5 mls oramorph plus paracetamol in between , get what you can Jo , get on top of it bless you xx

Yes indeed I do Peter.  It makes no difference really but several peeps have asked me and they look a bit baffled when I say I don't know ‍

Yes , think I will speak to my GP .  I have days where things are calm but past few days have really been full on .  I have 15mg codiene tablets  , so do you take 60mg each time ? 4 times a day? I am a novice on medication   Haha I am always worried i am taking too much uff 

I dont blame you about your teeth .  Many moons ago I was out on New Years eve in a local pub and a bunch of youths got kicked out for being under age , they threw a stone through the window aiming for the landlord , they hit me . Knocking me out and breaking my cheek bone  .  My face was a mess and the bruising and swelling was immense. My consultant told me he would need to drill down through my head and pop the bone back out else I would be deformed and age badly .. his assistant nurse could see the dread in me and when he left the room she said to me ‘ its your choice” dont  do anything you dont want to do  ‘ I never went ahead with it and there was no deformity when my face finally repaired and healed itself .. I can still feel the indent with my fingers but no-one would ever notice it. So glad of my decision 

Jo

x 

JustJo and Aly14 If you are having pain from the cancer right now it should get a lot better in the two or three weeks before the pain of RT kicks in as the radiation starts killing it.

Oh that’s terrible Jo , I think you have to go with your gut feelings , I take 2 30mg 4 times a day , they might be able to up your dose xx