Salivary gland cancer

Rachael S said:

What in earth do people eat to get through this please? I would take surgery over this anyday

Hi Rachael. 
At this stage I wasn’t eating at all. 
Fortisips by pump overnight through an NG tube 

Hi Rachael 

It does get easier but it takes time, I had chemoradio for tonsil cancer and it was miserable, I had a PEG feeding tube which was a life saver, feeding tube stayed in for 5 months during which time I started on small meals, soft foods , did enjoy a Guinness alcohol free on a daily basis, things will improve.

Peter 

Hi Rachael

Your issue sounds so like mine. I had a second occurrence of jaw cancer and had a left maxillextomy. I then had a second lot of radiotherapy which was on the opposite side of my face. (I had a mandibulectomy with my first cancer on the lower right side of my face and then had radiotherapy too) I was not offered an NG tube or a PEG either time as the radiotherapy was not aimed at my throat. It was the hardest time of my life, so painful. I could hardly eat and lost 10k.g.

You are at the half way point where all the side effects kick in so you have to hold in there. I'm afraid the treatment is brutal but worth the end results.

I initially was only on liquid panadol but that did not help enough. I spoke to my radiotherapy doctor and he upped my pain meds to Fentanyl patches and morphine. It did help and make the pain more manageable although it was never completely under control. He also prescribed a pink mouthwash something like Lidocain. I used to swish it around my mouth before I ate and it deadened my mouth just long enough for me to gobble down some food. Mainly I was eating yoghurt and custard. Taste was awful to I just ate to survive.

Speak to your radiotherapy doctor and ask him to up the pain meds and ask for the mouth deadening mouthwash. Take it a day at a time and you will get there. Get some Fortisips to help top up your calories. This is not a pleasant time for you but it is now 5 years since my last radiotherapy and things are going well although my taste is still affected and I do get a dry mouth. All things that can be managed.

You can do this, hold in there.

Lyn

Thank you, :) Good to hear you got through it. I have cocodamol at the mo, and Difflam and that lidocaine stuff (which they say I can swallow-but I just can't bring myself to).  All utterly grim, but I will just have to hang on! 

R x

• Thank you , it is good to know it gets better. :)

Thank you . I don't think a PEG is on the cards for me, as I can swallow, it's just very painful. It is good to see you got through it all though. I need the inspiration! 

Hi Rachael. Like Dani I was n g tube fed from midway through week 3 for 6 weeks. Treatments brutal simply because where it is our mouths throats are delicate at the best of times the treatments killing cancer. I had 35 radiotherapy sessions and my reductive was my lifeline. It enabled me to forget the struggle of getting enough nutrients and hydration plus  pain killers.which then in turn helps you complete treatment and recovery . I got very little pleasure from food but after treatment finished I took the attitude food is fuel. 
see your team tomorrow ask re n g feeding tube. Plus sufficient pain killers. 
best wishes 

Hazel 

Thankyou, I will Def discuss options tomorrow 

Hi Rachael

I didn't swallow the lidocaine either but rinsed it around my mouth and spat it out. Horrible stuff to swallow and it works fairly well with just swishing it around your mouth. Like Hazel says maybe an NG tube is a possibility so it is worth asking. I wish I had got one but I was ignorant of the facts at that time and did not know to ask and it was not offered.

Lyn