Hi there,

Many thanks Emma & Hazel for positive comments.

Well my first week is over and touch wood - so far so good.

In a routine now and all my appoitments are 9.00am which I prefer.

I am literally around 8 mins from house to hospital and have a free daily car park ticket and park right outside dept.
Have been taken on time and Wed appt was taken at 8.58 and back in car 9.15!

Very slick operation and staff are brilliant.
Made a large batch of home made tablet for the staff Thursday which they appreciated and seen advanced nurse practioner who advised of potential side effects to come.
I'm sure they will but will deal with them as treatment goes on.

So week 1 has been absolutely fine with no real side effects and apart from little more tired, I just have a power napo and fine again.
Will update end week 2 and hope more of the same.

Best wishes to all

kind regards
ian

Hi there,

Well week 2 is now over and again so far so good.

Little more tired and would say started to notice more mucas but that apart I have not really felt any discomfort or noticable side effects.

Aware goinf into week 3 next and potentially when more sied effects will kick in but will have to deal with as and when they arise.
Will post another weekly update next week , good and bad and hope helps someone in similar circumstances.
Happy to answer any questions based on my own personal journey.

Staff in radiotherpay are wonderful and consider it a blessing we have the wonderful NHS.
Not always right but by and large wonderful system and people and when you consider the cost of treatments we do not have to worry about the cost or health insurance etc over and above the diagnosis.

Kind regards to all
ian

Hi Karen

I hope that this helps! I didn't say anything before but about midway through the second week of post recovery, I did actually start to feel a tad better and things were definitely changing in my mouth.  This was only a few days after I probably hit rock bottom, I had to be driven to get some meds and I couldn't even walk into the pharmacy unaided. That was a really bad day, yet on,y a few days later I realised that I did actually feel a bit better.

I hope that you are very near that first day of realising that you are really on the road to recovery.

I seem to recall that I mixed my morphine with water, but please check first, I might have made that up, also the hospital gave me some sort of liquid ( sort of gaviscon texture), which had a mild painkiller in it. So I used to slosh this around my mouth first and then do the meds, followed by mouth cleaning.

are you on pain patches a well?  Sorry I can't remember 

lori 

take care xx

the results come back all clear , it’s so strange his pain from his ear up into his head has been really bad this week , he has lost more weight too , it’s 2lb off 5 stone now , he is eating but it hurts still , he finished treatment 10th April, xxx

Hi Ian, I was advised to read your blog by a moderator; I’m just into week 2 of 7 for treatment of tonsil cancer. I’ve started to experience thickening of the mucus in my mouth and note you bought dehumidifiers to help. I’m just wondering how they work and whether you could share the name or a link to the ones you had (I know it was a while ago for you now but there are so many out there)! Thank you

Hi this is Hazel it’s a humidifier  not a de humidifier mine was from Amazon. It was a cool mist  around a£35 I used it every night.  What it does is make the air moist the opppsute if a de humidifier if that makes sense.
The sticky  mucus unfortunately it is a major side effect of treatment. You can try and clear your mouth out without a flat Diet Coke. If you can tolerate it soda water that does help later  treatment mine was so bad that I was prescribed carbucysteine to thin the mucus down later the mucus goes often replaced with dry mouth  

well done week 2 in you sound on track. Happy to hell

if I can 

Hazel 

My nephew is almost 12 months post tonsil and lymph node cancer. Doing well but still has dry mouth. During radiotherapy bought a steamer found useful.

My husband now 7 months post radiotherapy for back of tongue and lymph node cancer. He also has no saliva. The heavy mucus stage has gone. Eating ok can't tolerate spicy food. Has to always have water available.  Uses Biotene mouthwash prescribed and bought Xylamelt tablets from Amazon as our hospital does not prescribe.

My husband was pronounced clear at his follow up in April so good luck.

Iv just had my 5 years clear appointment, they said come back in a year if you want so agreed to that. Dry mouth is my only complaint really which is worse in the night or when exercising, something i`ll have to live with. 

How donyiu cope with it as I totally struggle with it?

Thank you so much Hazel, really helpful and I’ve bought a humidifier and it arrived yesterday (have yet to set it up but will do it today). I’ll see about getting some soda water in too; anything is worth a try! Thanks again for your support :-)

Its just something Iv accepted all the things that get recommended are short term relief 

My husband found pomegranate juice helpful especially for mucus. We had to buy on line but if you've got afro Caribbean grocery shop near you should be able to get there

My husband found pomegranate juice helpful especially for mucus. We had to buy on line but if you've got afro Caribbean grocery shop near you should be able to get there