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.

Dry mouth, anyone used a nebuliser?

Mrs Wozza
Posted by

Hi Dani,

I certainly want answers when l am up to it. I always trusted the professional but l should have trusted my own instincts first. 

I sure wish l could turn back the clock.

Val ️ x

Mrs Wozza
Posted by

Hazel,

I do actually wonder if l will have time to take a wash during treatment it's going to be a such busy 6 weeks.. Are you allowed deodorant in radiotherapy?

Could you drink tea? I have been drinking bottled water. For some reason since my operation my sense of smell has increased and l cannot stand the smell and taste of tap water. 

The professionals at the hospital l am attending are absolutely fantastic. They make up for everything that has gone wrong in the past 8 months. The nurse who is dressing my leg is even going out of her way to help me squeeze her in.

Val x

Beesuit
Posted by

Ha! 
Nobody told me deodorant wasn’t ok 

I had a good soak in the bath every day, anyway. I needed it to get rid of the grease on my neck. I was given diprobase to smear on my neck but soon abandoned that for Cetraban after washing.  I put nothing on the morning of radio but kept a pot of pure Aloe Vera in the car which went on as soon as I got in there on the way home. 
I’m fairly fair and was warned about burns but all I got was a little flaky skin on top of the redness in the last week. Some people were badly affected, Hazel, I know ended up having to use Flamazine I think  and cover herself with cling film, poor thing

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 Val

I also wasn't told I couldn't use deodorant, just not to moisturise my neck before radiotherapy session.  Plenty of moisturiser after though.  Your team may well recommend what moisturiser to use.

I found I couldn't tolerate drinking anything other than water once rt really got under way.  You may be different though. 

I'm so pleased your team at the hospital are looking after you well.

Linda x

Mrs Wozza
Posted by

Dani,

I've been told to put E45 on the scars on my leg,c  and neck but l do prefer Cetraben but doing as l am told. 

What did you wash your face and neck with before radiotherapy? I've always been a slap it on moisture person and now won't be allowed.

I've been told about Aloe Vera, did you send me the link. Did you put it in your face and neck? 

Val x

RadioactiveRaz
Posted by

Hi Val I was told only  use whatbthe radiotherapy teams advise in my case sobrederm use after treatment .Ok in my case nithung would have stopped the burn that I got Dr Sen knew in day 1 what I would get but he decided why worry me for 5 weeks it was because Larry the lump was so close to my skin it was always going to happen due to margins he had to do.I started going red quite early and naively thought ok it’s coz I burn in the sun if I don’t have high factor cream ( which I always wear anyway ) my dad was ginger and I’ve inherited his skin freckles !But no that was nothing to do with it . I didn’t totally erupt until week 5 but when it went itbwas spectacular! @Beesuit is right before mask was put on they gently  peeled the Polymem badage off wrapped my neck in cling film then I had to thread the feeding tube through the mouthhole in mask all while lying down in the table.Not a pretty sight but never the less I did that for 10 sessions.Never got flamazine just the polymem bandages that I had to leve on until the pus was green always remember them saying green is good I thought it was yucky.But I survived to tell the tale LOL 

Its surprising what our bodies can do when push comes to shove , although I still cry if I break a nail

Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

RadioactiveRaz
Posted by

Val I had a bath every night as wasn’t allowed to shower with the burn but no bubble bath just warm water . Well I did cheat occasionally with a bit of bubbles taking care not to get near my neck using a bath pillow

but yes no to deodorant yiu tend to forget all the does and do nots.

H xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

RadioactiveRaz
Posted by

Hi Val

sorry just seen your tea  question , I only drink herbal or decaf coffee so was so so ,tomstart  with was ok but quickly became intolerant to both , in fact people are told nit to drink anything caffeinated as it can make dry mouth worse no no tea coffe or fizzy drinks. Although occasionally I wanted to try Diet Coke rarely managed more than a few sips , sometime soda water helped with the mucus.Like you my sense of smell is still heightened and most tap water to me smells of pure bleach drives Hubby mad  so it’s 5 x5 litre bottles of water every week or somedays less than weekly .

H xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

Mrs Wozza
Posted by

Hi Hazel,

I know they will be hitting my neck nodes because l had two neck dissections. 

I'm telling myself it's killing the enemy so l will take the drugs and get through it !!!

And I love water

Val x

Beesuit
Posted by

Val

i used Sanex hypoallergenic shower gel. A good squeeze into the bath and washed my hair then face and neck with it. 
Neck got slathered with Aloe Vera gel in the car in the way home. Amazon do the 99% pure stuff. 
I drank tea with milk but my one saving grace was a decent cup of ground coffee. I enjoyed that the most. Still do. 

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. 

Mrs Wozza
Posted by

Hi Dani

I use Sanex hypoallergenic shower gel all the time. Was just watching tele and it suddenly hit me that l can't have a bath because of my leg. I have to wrap it up in a plastic bag and shower. If l gt burns l shall have to be careful and bathe it gently. You wouldn't believe the trouble l have with my leg. We do have a wheelchair so Kelvin pushes me around. I can walk but they told me of last week for doing too much. I do bits then sit with my leg raised. I used to walk 18 holes round a golf course with Kelvin but l would be surprised if l do that again soon

️Val x

RadioactiveRaz
Posted by

Hi Val you wil I had my aim of riding my bike and 8 weeks postbtretament I got on that’s plane ok first ride was 8 km but baby steps . The last time in November I did several bike rides jn excesses of 60 km so best advise is have goals and if yours in a walk round the golf course with Kelvin you will get there !

sending hugs 

Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

Mrs Wozza
Posted by

Hazel,

I can't ride a bike. My sister learnt but by the time l was at that age we lived on a busy road and my parents wouldn't buy me one. She taught me to swim though so l made sure my kids learnt both. I have always loved walking. I guess any form of exercise is good for your mental state. My Oncologist told me to go for walks each day during treatment. Crikey l am going to be busy.

Val x

Drivermason
Posted by

Morning

I don’t think we’ve chatted yet. Hubby has just done the 6 weeks radiotherapy and finished 5 weeks ago so anything we can help with, please just shout.

Like Hazel, Ken’s neck severely burned in the last week or so and continued for 2 weeks post treatment. He therefore resorted to baths however he sometimes just took the shower head off the hook and had a sprinkle. He used deodorant with no problems. I bought him Sanex 0% shower gel.

Throughout radio he was given Flamigel RT cream and told to slap it on. When radio finished he was given Flamazine burn cream. He also had Polymem bandages that drew out the green stuff and were fairly gross but worked a treat.

My advice to you would be to get as much as you can from your hospital team. Ours were fab and gave us copious amounts of creams, morphine, Caphosol, gel Clair and actibalm. We asked for stuff most days so we could stock up and we never bothered the GP for weeks. We still have a cupboard full.

The one thing we’ve had no issues with is obtaining the Fortisips (same stuff as Ensures). They just arrive every month, 200 bottles. I wonder if that’s because Ken has a PEG tube? No idea really.

I give Ken whatever I can to drink and his tastes have changed throughout the treatment. At one point he drank normal tea, then camomile, and it’s currently cappuccinos. 

Throughout the treatment  there have been various “incidents” and as a senior Civil Servant I’m quite good at drafting emails and we’ve written to PALS 4 times. I have to say they were very good and we did actually get apologies from folk however that doesn’t help or put things right e.g. one day we turned up, Ken had all his pre chemo liquids and then they told us the pharmacy hadn’t made his chemo and were refusing to do so. On another occasion they gave him the wrong drug! Think I could write a book, but on the whole things went quite smoothly compared to what I’ve heard from others. I’ve also written to the GP Practice Manager and explained how the receptionists were making us feel. She rang me and we had a long chat! Things are better now, although we still didn’t get our BioXtra on Friday.

I wish you well with your treatment and please shout up if we can help with anything.

Much love

Sharon and Ken xx

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

 

 
 
RadioactiveRaz
Posted by

Hi Sharon 

pits like reading our journey with problems .our daughter is high up in the n h s and she was my email writer ,took 12 weeks for the surgery to write to me the year kept saying looking into it by sending 28 days letters. Didn’t gets pals involved though st hospital was ok with them. Yes with ken having his leg that’s why your get then fortispis delivered.when I was in n g tube I got those feeds delivered but was then at the mercy of the g p. 

Can only echo your advise to everyone get as much as you can from the hospital 

Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer