Worried about starting radiotherapy

Hi Lizzie,  thanks for your comment.  I really appreciate it. I am so worried about the prospect of naso gastric anything as I even fought with a gastro person trying to give me an endoscopy, and I had 15 of midazolan on board, which should have felled a horse.  They gave up in the end.  My throat is stupidly sensitive, so they are planning to fit a PEG before starting radio to ensure they can feed me.  Seems like you got through without anything!  How was the swallowing?  I really do appreciate your feedback as every talks of ng tubes and don't understand the gag reflex problem    Andrew

Hi Hazel, thanks again for uour support.  I am so worried about how worried the oncologist is about my swallowing, and the fact that I can't take an ng tube due to my stupidly sensitive throat.   Andrew

Thanks Dani, I am really dreading this.  My oncologist has proper put the wind up me about the radiotherapy.   I can't take ng tubes at all.  We tried.  Not possible.   As a result I am having to have a PEG fitted under general.  I hope it ends up better than it is being painted.  What about the mask.  How did you gind that?  Andrew 

Thanks ER1.  As I said in other responses, ng tubes not possible as I react violently to foreign bodies in my throat... overactive gag reflex.  I also worry as I am 66 and have had blood cancer for 5 years already, for which I take daily chemo already.  I have to stop this to take the scc chemo, so I am already very run down.  Not a comfortable place at the mo.  Thanks again for your comment.  Andrew 

Thanks a lot Jo, it is so good to be able to talk with others undergoing the same stress.  I hope you get a great result,  and get some relief from the pain.  Is the pain from the cancer?  I have a very sore throat and a lot of pressure in my neck from swollen lymph nodes.  Is yours the same sort of issue?  All the best, Andrew 

my squamous is to the soft palate - it was progressive pain in the early days but after my biopsy the stitches came away within 48hrs  leaving me with a large gaping wound to the soft palate next the uvula - I was told it would heal on its own and could not be restitched as that would  have to be in theatre again  - it is still not healed over ( 6 weeks on ) and the area is a mass of angry red scar tissue and it looks to be spreading , it is so swollen when I talk i gag so I am dreading the peg being fitted ..  I try not to look in my mouth anymore as I often wonder how it will ever be normal again  I have now accepted not being able to eat properly as it has been this way weeks on end already so when the time comes when I will rely on a peg i seem to welcome it with no real fear or qualms  

I do get neck pain - more so to the glands under my ears , that also makes me feel all out of sorts but those days come and go - hopefully just reactive glands flaring up and trying  to put up a battle to what is going on 

Jo

x 

Hi slammed 

I did do a lot of gagging with mucus, swelling etc. and I did have a LOT of nausea.  My throat is super sensitive like yours.  Any mouth stuff and I am gagging away.  I can even bring it on just thinking about it. I totally understand You dreading everything. However, what I want to say is. I just sort of got used to it and stopped dreading it so much. I learnt I could cope and I really think you will as well.  The thought of it all before treatment was terrifying but I did cope with whatever happened. You will too, I am sure.  And once you have coped once, it becomes easier.  I managed to eat weetabix with protein powder and double cream throughout (with pain relief of course). Morphine made me feel v sick though! But none of its forever. 
All the best.  
lizzie

Thanks Hazel - I am not worried about mask fitting and I WILL be asking for  eye openings lol … see what I already learned from you guys

Deffo eyeholes you can  watch the leaves on the accelerator go round and round you get used to the sounds and motions it all makes. It’s fascinating.

Hazel x

Hi Jo that sounds awful I am so sorry.  I was offered an op to remove half my tongue, but refused that and opted for chemo/radiotherapy.   I have insisted on a general anaesthetic for my PEG, maybe you could do the same.  I wish you the very best. Andrew