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?

Drivermason
Posted by

Hi Pixie

My hubby is doing chemo number 4 tomorrow at James Cook in Middlesbrough.

He has 2 hours of saline solution, then the 1 hour Cisplatin, then a further 2 hours of saline.

This all takes about 6 hours. On his last bag of saline we cross the corridor and sit in the queue for his radiotherapy and my radiotherapy.

We find the day flies by. We talk to many people, there’s a MacMillan volunteer who chats with everyone, we both get a free massage and I have a wander to M&S Foodhall or Costa for refreshments, both are on site.

There’s also tea, coffee, biscuits, sandwiches and soup provided to the chemo patients, although everywhere will be different.

It’s a bit scary at first but we soon got into it. Hubby had sickness after the first treatment but they changed his antisickness meds to one tablet that lasts 5 days and it worked a treat.

Hope this is helpful and feel free to ask anything you like as we are currently doing this so all our experiences and advice should be current practice.

sending hugs 

Sharon

Much love

Sharon and Ken xx

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

 

 
 
Babs1969
Posted by

Awaiting biopsy results/ appointment for plan. The surgeon who did op says hubby is prime candidate for neck resection to remove affected lymph node given age and fitness.

It's the waiting - op was a fortnight ago 

Lisa x

B69
pixie76
Posted by

Had my mask fitting and CT yesterday.

my PEG is getting done on the 10th and my first rad session is the 13th. 

RadioactiveRaz
Posted by

Hi well done , now things  start to fall in place and once treatment starts you do get in a routine .Thanks for keeping us in the loop .

anything you   want to know just put on forum and in every of us will get back to you.

Onwards and upwards

Hazel x

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

Chicotime
Posted by

I was in over night both times 

pixie76
Posted by

Had my PEG insertion yesterday, so painful,  came home last night and slept on the sofa because theres wasnt a chance in hell of getting upstairs. Tonight will probably be the same.

It hurts to breathe, to move, I'm so uncomfortable. 

I really dont know how I'm going to make to journey back to Shrewsbury on monday to start radiotherapy and be there for chemo pre assessment too. I cant get up let alone climb onto a bed and lie flat for half an hour. I keep getting spasms and I'm afraid if that's starts I'm going to panic cos I cant move.

Had codeine before bed but didnt touch it and Paracetamol does bugger all too.

sorry for moaning but no one else understands. 

Ron51
Posted by

Was it a peg or a rig, I had no problem with my PEG but others have had with a RIG. Have you been shown how to look after it? if so is it to tight? if I did mine to tight it would be painful but it wasn't when it was done or at any other time apart from the odd occasion I did it to tight and I had it for around 6 months or so.

pixie76
Posted by

it's a PEG with a balloon on the end. 

yes they've told me how to flush and in 2 weeks I will see a nurse who will show me how to change the balloon and rotate.

theres 3 buttons on it with 1 inch thread sticking out. they should drop off in 2 weeks

Ron51
Posted by

It's a RIG with a balloon on the end (or so I have been led to believe) so I'm not going to be much help, I think Chris has had both so he may be able to help.

pixie76
Posted by

ok. the hospital kept saying PEG.

chris2012
Posted by

Good afternoon Pixie , i just cannot understand why you are in so much pain, i have had a PEG since 2009 and have never had any serious pain problems or any other problems, i did have an infection around it just before Christmas but a course of anti-biotics sorted that out. Are you being seen by a dietitian? if you give her/him a ring as they should be able to get a nurse out to look. The only reason i can think you are in pain is because of the stitches which i have never had, i have used hydrocortisone cream before around the area if it becomes a bit uncomfortable, i.e if i have pulled it by mistake. As Ron said the locking disk on your stomach could be to tight but as you have stitches in it cannot move anyway so it kind of defeats that idea.Of course, it could well be an infection. . If you can dose yourself up with painkillers until you see someone on Monday then explain to them your problem but if your condition does not improve then please phone the hospital nearest you for professional help and advice. I know what its like to be in pain as i have been there a few times myself so a phone call to the hospital sounds the best option at the moment being the weekend.I hope you manage to get some support fairly quickly , take care . 

                                                    Chris x

Its sometimes not easy but its worth it !                Click here to find out more

chris2012
Posted by

Sorry its me again , the PEG and RIG are the same its just the way they are fitted , i think the RIG is easier to fit than the RIG..

                                                       Chris

Its sometimes not easy but its worth it !                Click here to find out more

pixie76
Posted by

thankyou. I'm in on Monday do will ask then.

it was only done yesterday but I thought I would be able to at least get off the sofa. 

chris2012
Posted by

Hopefully, you will feel a bit better tonight Pixie , its not the sort of start you want , good luck .

                                                                         Chris x 

Its sometimes not easy but its worth it !                Click here to find out more

pixie76
Posted by

hi Chris. 

I'm in hospital on Monday so will ask then. 

I only had it done yesterday but thought I would at least be able to get off the sofa.