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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.

Here we go round the Mulberry Bush

St Bernard Lady
Posted by

Thank you all for the posts yesterday.  I had a real meltdown over it and did not want to talk to anyone yesterday, still feeling fragile today and just cant be bothered with anything.  Will bounce back up again soon I am sure, trouble is none of us know what the hell is right or wrong at the moment.  Poor NHS staff are frazzled, not had any testing and must be very worried for their own family, the last thing I want to be is selfish and demanding on these poor people am sure that there is a plan somewhere and I certainly wont be the only one getting upset over things.  Spoke to my GP surgery yesterday and they were a bit horrified that I am left in limbo but I guess that the risks probably outweigh the treatment and at least for now I can walk talk and eat, although drinking through a straw as mouth is sore and lips very blistered.  Can I ask if after Radiotherapy any of you had blistered lips and if you used anything special to moisturize them, I am currently only using Vaseline but they are very ulcerated and keep drying out and bleeding as the tumour grows.  I wondered if anything like Bonjella might help.  I am taking dispersable paracetamol 4 times a day to control the pain and luckily local pharmacy were selling a pack of 100 which they willingly gave my partner when he explained.  Also he got laid off on Furlough Thursday evening.

Look after yourselves

Mo xx

PFJTHS
Posted by

Hi Mo

My only advice to you is to not assume there is a plan somewhere and to make sure that you get heard - otherwise someone else will shout, be treated and you will get forgotten.  You have to take charge of this, especially at this time in the NHS.  Your GP is horrified at the way you have been left in limbo, that should tell you something.

You have got all the ENT/Head and Neck contact details for Southampton?  If not, I can post a copy of the leaflet for you.

Peter
LindaWT
Posted by

Understandable Mo and I don't think you're being selfish at all.

I didn't suffer with blistered lips after radiotherapy although they were incredibly dry after the surgery and further treatment so I kept them well moisturised.  Working outside I always had dry lips anyway and I remember reading that vaseline wasn't the best thing to use.  I think I bought some lip balm from The Body Shop.  It might be an idea to speak to a pharmacist to see what they recommend.

Such difficult times at the moment.  I do hope you're able to get some reassurances from your consultant as to what they are planning for you.

Take care.

Linda x 

St Bernard Lady
Posted by

Thank you Peter, I have the numbers but I can logically see where they are coming from there is a small recurrent growth in my throat that they want to biopsy, am sure this is not an emergency and can wait a few weeks.  However the facial tumour has grown rapidly but Radiotherapy are waiting for results of biopsy so they can treat both areas if required.  Not overly worried about the throat but am absolutely petrified of the facial growth.  So who do I call?  Radiotherapy, Max Facial or head and neck this is my dilemma and if it was not for the fact that I have three different departments keeping an eye on me treatment would have been started by now...  Have heard a rumour that spire hospital is being taken over for cancer patients but nothing has been confirmed, only got this through someone that worked there.  Might try McMillan nurse as first port of call she has been really helpful a couple of times.  Also no one has been able to tell me if these are related mets or two primary's.  In addition to dodgy lungs putting me in the high risk group it might just be for my own good that I stay away from the places where the virus is most likely to be, ie hospital.  My head is literally going round in circles.  I need to stop over thinking and try to enjoy whatever life I have left so please send me some jokes.....

Love Mo xx

Drivermason
Posted by

Mo

Ken had blistered lips and tongue. He got Gelclair which is supposed to be mixed with water and used as a mouthwash but he was told to use it neat on the blisters.

He also got Actibalm. Both are available on prescription so ask your GP for some.

Take care. 

Sharon xx

Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20

Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20 

 
 
Piya10
Posted by

Hi Mo

I didn't have blistered lips just a couple on my tongue.The one thing my pharmacist told me to absolutely avoid was Bonjela.

Tricia

Piya10
RadioactiveRaz
Posted by

Hi Mo

dor ulcers  and my radiation burn inside mouth I used gel lair on prescription , £74 to buy a weeks supply  can’t say if it would work on lips  as my lips didn’t crack 

now I occasionally get mouth ulcers I use Iglu from any chemist approx £8  

theres blistex which again is an over counter o product 

for treatment dont please use Vaseline’s nothing at all with a paraffin base as danger of burning. I used burts bees lip balm ,Holland nad Barrett or poss boots. I had no problem at all 35 radiotherapy sessions .

yes n h s at stretch  point but take notices please please pester badger shout if you dont someone’s else will like  others have said 

Please remain positive 

sensing love n hugs 

Hazel xx.

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   

RadioactiveRaz
Posted by

Hi Mo would start with Max facial then take it from there, Jokes am useless will think if one why haven’t aliens visited our solar system ? They looked at the reviews Only one star!

what do you get if you cross a dish with an elephant ?

Swimming trunks 

How does good king Wenceslas  like his pizza 

deep and crisp and even 

Ok you lot please please do better ,let someone make Mo laugh 

Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   

Beesuit
Posted by

Hi Mo

if you want to give gelclair a try I have some I can pop into an envelope for you. 

xx

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. 

Michael RSA
Posted by

I am on my last two radiology treatments and I also have ulcers on my lips and in my mouth. I am using Gelclair it hurts when applied but it eases the pain. Like you I am battling to eat due to the blisters in the mouth.Hope you come right 

Michael

Stay strong 

manup1
Posted by

Hey mo

Hang in you're nearly there,I start on Monday (I think) I haven't troubled the n.h.s staff but after 5 extractions on Tuesday past I still screaming with pain. So paracetemols getting a belting.as for work all the team are working from their homes and trying to get an answer re wages. The m.d. is a personal friend but is locked down in the states. Will just have to hang in. I've got a gum sheild to wear. Because of bruising and swelling and stitches I can't get it in my mouth.

My timing was never great. Paul

If you're going through hell keep going, I'll meet you at the other end x 
manup1
Posted by

Hey mo

I was going to wedding this weekend. The bride and groom both work for sky t.v. the service would be one thing but ,the reception will be great........

Was out on my kayak the other day, it was bloody freezing. So I made a wee fire in the middle. (It sunk). Moral.. you can't have your kayak and heat it...

When the human race has come to pass, and all earthly life disbanded,

We may return one day en masse ,

To find the aliens had landed

...

Take care

Paul

If you're going through hell keep going, I'll meet you at the other end x 
St Bernard Lady
Posted by

Thanks all.  this one has been doing the rounds but a bit rude but topical for us all.

A suspected Covid-19 male patient is lying in bed in the hospital, wearing an oxygen mask over his mouth and nose. A young student female nurse appears and gives him a partial sponge bath.
"Nurse,"' he mumbles from behind the mask, "are my testicles black?"
Embarrassed, the young nurse replies, "I don't know, Sir. I'm only here to wash your upper body and feet."
He struggles to ask again, "Nurse, please check for me. Are my testicles black?"
Concerned that he might elevate his blood pressure and heart rate from worrying about his testicles, she overcomes her embarrassment and
pulls back the covers.
She raises his gown, holds his manhood in one hand and his testicles gently in the other.
She looks very closely and says, "There's nothing wrong with them, Sir. They look fine."
The man slowly pulls off his oxygen mask, smiles at her, and says very slowly,
"Thank you very much. That was wonderful. Now listen very,
very, closely:
"ARE -MY-TEST-RESULTS-BACK ?"

chris2012
Posted by

Brilliant , how do people think of these jokes, I'm racking my brains trying to think of some

                                                  Chris x

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

Hellebore1
Posted by

Hi Paul (Manup) - this is for you. Bit concerned that you still have a lot of pain from your dental extractions and hope to start treatment tomorrow. (Radio?=/- chemo?) In my job I carry out such extractions for patients prior to RT. We ideally like 10-14 days post-extraction before treatment starts so we can be sure the sockets have healed. In these difficult times I can understand that the timings have all been compressed, but if they are still hurting tomorrow (or it looks likes 1 or more isn’t healing) then please tell someone as early in the day as possible. They should really get a member of Maxfax to review the healing. Problem is, if a socket isn’t healing, or would benefit from washing out or smoothing a piece of sharp bone, then shining xrays at it for 30-35 sessions in a row is a good way of stopping healing and allowing a bigger problem. The Radiotherapy staff won’t ask about your mouth, but please contact the Macmillan nurse (leave a message today?) and get this checked before you start. Hopefully all is well, but a little intervention now may save you a lot of trouble in the future. Sorry to be a negative, but you deserve to have this checked out so that your treatment goes to plan. A few days delay to allow healing is a lot better than the potential alternative of non-healing sockets during radiotherapy.

Hilary