Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

just diagnosed, what happens next?

pixie76
Posted by

I'm doing the rinses, taking morphine and paracetamol.

they just harp on about my weight loss and telling me to get stuff down my PEG.

once a week I'm in on iv fluids because I can barely stand. usually day after chemo.

I've not seen my oncologist since Christmas. 

Beesuit
Posted by

Oh Pixie you poor thing. 
Week three is when It all hit me and I spent three nights in hospital getting an NG tube placed and getting rehydrated after nothing to eat or drink for two days. The team got on top of pain relief properly ( like you can take morphine every two hours if you need it! Not the four times a day it says on the bottle. After that it didn’t really get any worse. Yes two or three weeks after radio finished are horrid but I wonder how much of that is because you are left to your own devices and are not being seen every day. Please please, Hilary is right, kick up a fuss at your treatment today. It sounds like you too need a few days in hospital. It’s worth it. There is only one alternative. I’m rooting for you, my dear! 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

Beesuit
Posted by

Oops sorry posted twice

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

pixie76
Posted by

I'm going to ask hub to call them.  its making me sick now, and my throat is bleeding,  I'm too swollen to speak.

my morphine is 2.5ml every 2 hours. I'm constantly putting stuff down PEG 

flush, drugs, flush, drugs etc

Beesuit
Posted by

Fingers crossed for you Pixie

Just a suggestion but see if you can go onto a long lasting morphine twice daily. 
I was on between 5 and 10 ml of Oramorph. 
Fentanyl patches are an alternative too. I didn’t need those but others here in the community did. 
Bleeding from your injured mouth is expected I’m afraid 
Good luck

Edit

Morphine made me sick too ( on top of all the other things that make you sick) I was given metoclopramide to take which helped a bit. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

Drivermason
Posted by

Morning Pixie

I’m so sorry to wake up to your terrible news today.

You need help desperately.

My hubby’s symptoms didn’t peak this soon but he did get them all. He had long lasting morphine morning and afternoon. Started out with 20mg twice a day and then increased to 30mg. 

He also spent much of his day (and still does) putting fluids, medication and Fortisips down his tube. He was then given Calogen to boost his Calabria intake too and he had to do 40ml of that 3 times a day. 

On at least 3 or 4 occasions things were so bad that the radio team or chemo team called the consultant and he came immediately to help with the problems. We found all the staff extremely helpful and every time Ken was in complete distress they would pull something out of the bag i.e. additional meds or an extra review etc.

please let us all know how you get on as you really must complete your treatment.

Sending huge hugs xxxxx

Much love

Sharon and Ken xx

You never know how strong you are until being strong is the only choice you have.

 

 
 
pixie76
Posted by

given me cocodamol 4 times a day along with the 2.5ml morphine every 2 hours. Lactulose. They said maybe move onto patches next but said if no better by Wednesday then they'll admit me for the duration of treatment. was sick on the way home, pure acid, boy that burns. I have chemo tomorrow. 

Beesuit
Posted by

You poor thing. 
You know being taken care of in hospital might just be what you need. 
Take care

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

LindaWT
Posted by

Hi Pixie

I was so sorry to read your desperate post earlier today.  I do hope after your appt today you felt you were listened to.  Do you have a telephone number for a head and neck nurse or the oncology team in case you need to speak to someone urgently and require more support?

Thinking of you.   

pixie76
Posted by

I went in and they saw me straight away and spent 2 hours with me. 

they are really good at that unit. I finally saw my oncologist too.

Beesuit
Posted by

You can do it 

I was 67 when I was diagnosed and finished radiotherapy three weeks after my 68th. I’m now a year on and improving daily. Anybody who doesn’t know me thinks there is nothing wrong with me. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

interat
Posted by

His pixie first the pet scan will be about 7 days for the results, it looks like you live alone?  Try and talk to your family about us your cancer, and also talk to your gp they should be able to give you an idea what's going on, get yourself some sleeping tablets from your doctor as I did at least you will have a good night's sleep, I hope it's good news and wish you well interat 

pixie76
Posted by

I live with husband,mom and my 3 under 10s. 

today is a better day. xxx

thankyou all for your support. x

RadioactiveRaz
Posted by

Hi Pixie just read your post sorry you are having a bad time , but glad today has been a little better it really isn’t a long and winding road with many ups and down s pleased to see your last post is more positive.

Any help just ask there’s lots in here 

Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

LindaWT
Posted by

Well done Pixie.  So pleased to hear today has been better for you.

X