Hi Hazel

thank you for your response and advice. I was wondering about the ribena myself and will proably stick with water from now on.

For years I have slept with a fan at bedside table and like to have cool in my face and also have fan on during day in my den at home or office. Might be making throat a little drier? but I dont want to give up unless absolutely necessary.
Have already been on co codomol for few years and probably why was given morphine so early in treatment as tolerance level probably taken into account.
I find drinking and difflam mouthwash helps the dryness and was told to keep up with.

I find the pain worse middle of night past 2/3 nights when I waken for loo and prob because meds worn off. Been told today I can up meds a little if needed and will have review on how I get on over the weekend with nurse on Monday. All ,my appointments are 9.00am and first one in so I'm grateful for that as well.

That said, Im still positive and working at home just now, utube,ipad,reading and happy enough with my gadgets.
Just something have to go through but remain focussed on longer term benefits.

I'll post again next week after I see another week into journey. Not sure how much longer I'll be able to work from home but will play it by ear.

Again thank you for your messages.

Have a great weekend

Kind regards
ian

Hi Ian

yes the fan could be drying you out ,I got a humidfrom Amazon abiutb£25:money well spent as a possibility later in us sry mouth setting in and then that wakes u still does for me so it’s up and rinse with warm water ps I can onky use mineral water tap water is now like chalk oh themjoy of tonsi cancer ! In the warm as u can stand ut water use table salt but unhabe to be gentle with it don’t gulomhenrky sip rinse spit nit pleasant but necessary.

i was told at one point if pain was too bad upmthe ora 10 mil every 2 hours !!!! Luckily I onky needed that for a day or so now 7.4 mil every 6 hours. We are in Spain at the min we rent an apartment oncologist gave me permission to come for 3 weeks it’s not been easy as food wise I am in energy shakes ,limited food by mouth .but everyone’s is different I had 3 Ed degrees radiation burn in neck de said it was inevitable for me along with I still have a radiation burn one side if tongue again the margins thatbse has ro be done in my case to eradicateall the the cancer. I always has 9 am appointment but took us 90 mins to get there due to traffic so lucky u being near.

keep in touch shout if need anythjng

hazel 

Hi Hazel,

Just quick thanks as I seen your advice to someone else re toothbrush and I got a pack of 3 CURAPROX ultra soft bristle for teeth. Was so sensitive when brushing and using these plus sensodine toothpaste makes it a little more easier and comforting to use.
Also bought 2 humdifiers from Amazon and one for my den and another larger one for bedroom.

Makes a cool mist and also put in essential oils as well  - i have eucalptus/tea tree for den and lavender for bedroom during night

anything to help is great and little tips can sometimes go a long way to help discomfort so many thanks

Ian

Hi Ian you are welcome I find the toothbrushes and humidifier are bith gif  sends they make such a difference,

i also find a magnifying mirror attached to bathroom mirror invaluable as well along with the finest interdental brushes as time goesonnyiur tongue won’t be able to clear   if food out if your mouth but gently use those and at least we can hopemtomkeep,our teeth !.

Keep lots  if tissues around and u may find drinking difficult for a while I was green tea water plain is still such a big no no it’s oike chalk. I am a expert in soda water m tesco oiver schweeps as their  bubbles are too harsh .! Sad I know . It’s a hard journey bt every little helps if u need anything just shout . Am 10 weeks post radiotherapy and still in my ibuprofen co codomol n started to reduce the ira morph 

where un U.K. are you ? I was treated in Leeds 

if u want to send a friend request you can private chat 

hazel

Hi there,

so end of week 4 into my 6 week treatment plan and progressing along.

On morphine/paracetamol to help manage pain and am still drinking at 3/4 litres water a day which I find helps.
Difflam mouthwash helps and find refreshes mouth as does caphosol mouth wash i was given in addition.

At the moment mostly all under control but am struggling a little with eating. Don't have much appetitte but have to force myself to eat as a function rather than enjoy. Taste buds all to pot at back of tongue and most things tates metallic. Am on drink supplements which I can manage to keep caloroies and weight up and I can manage chicken soup/ambrosia rice not to bad.
Lots mucas during night and up every couple of hours to clear and to go to loo, but also have a drink before falling back to sleep. I do think drinking as much as possible helps and have been encouraged to drink as much as possible by nurses/radiotherapy staff
Nice tip from Hazel on here to get soft CURAPROX toothbrushes from Amazon and more gentle to clean teeth with so thanks again to Hazel.
2 humidifiers I bough I use day and night and put eucalyptus oil in and feel helps as well.
Still have a small nap in afternoon as tired and takes edge off but also still managing to work away at home and keeps brain active.

Side effects pretty much what I was told to expect at this stage and staying positive and monday sees me goinf into my 5th week and 10 treatments to go. Will deal with anything additional as it comes along and seeing dietician and speech therpapist Monday after my treatment for a catchup.

Have a fabulous team at my hospital in Dundee and cannot praise them enough for care/support and advice. The whole support infrastructre has been magnificent and inspires confidence when I have them behind me.

Will post again end next week but happy to help anyone I can with any questions or tips on what i have being doing. Little tips can sometimes help a lot, like the toothbruch may seem minor, but that little tip from Hazel is a blessing for me as now no real discomfort with teeth cleaning.

I wish you all well.

kind regards

Ian

Hi Ian

i has 35 treatments so 5 more than you.have yiu asked the hospital for a nebuliser they loan them out and I found around this period it helped immensely to clear the mucus. Water is deffo good drink it while you can I woke one day n it was like chalk so now it’s soda water n occasionally peppermint tea for me. Hope you don’t need a feeding tube but if yiu do take it from me it’s not the end of the world it saved me around the 4/5 week period all I could eat were poached eggs n woe betide if their white wasn’t cooked right !

i had ut in a total of 45/days nit the most pleasant experience but life saving ,I appreciate your comments thank you we are all here to help in anyway we can .i am 10weeks post radiotherapy still in the high calorie shakes but unfortunately I got part of my tongue radiated as the margins the dr wanted included catching my tongue so still on ora morph n co codomol.but every day am eating a bit more just having a slice of Swiss roll smothered in ice cream  calories   calories  Ian my new motto. Strange shopping now always watched what I ate now it’s full fat everything !

good luck for this week . Ray and get the mask magnifying mirror and watch out for oral thrush it’s difficuktbromexplain but I’d u get the pain levels shoot up and need nystatin or flucazinole ASAP .the mirror helps coz  thrush it mimics mucosa as well but if you scrape it u may get blood underneath. Throat cancer just keeps on giving but together we can beat it

ps I worked in Dundee’s I we 40 years ago in defied if a travel agency that’s long since gone ,think Honeywell’s were one of the business accounts that Dundee delay with ! 

Ps have u lost the urge to read yet ? I did it lasted for 3 months and I am an avid reader and waffle on a but 

take care

hazel 

IHi Ian

youbare welcome we have such a rare cancer that replies aren’t as often as sat breast or prostrate but we are a tight little team lol.

re h9,idays 10 weeks post radiotherapy and am writing to un from our long term meeting this entails rental apartment in Los Alcázares on the mar menor near Murcia .my oncologist gave us permission as I would have full access to cooking and cleaning facilities to be honest wouldn’t want to Be un a hotel with all the problems  so maybe think about an apartment as it is easier  cause. Remember our immune systems are down so mixing with others isn’t good. I am wearing factor 50 on my neck and factor 20 Elisewhere although it’s about 22 degrees my body thermometer is out of kilter and am wearing long sleeves whilst hubby in shorts n sleeveless! Re insurance we have a yearly policy and at the min they are keeping me covered for everything apart from tonsil cancer n side effects which is fine as I dint expect getting ut again and if I felt ill it’s easy enough to Jump on a plane and in U.K. in 2 hours. We did obtain quotes to cover for tonsil cancer n was quoted £2500 for yearly so at min relying on EHIC card which brexit will still be honoured up to 2020 providing we don’t just up n leave we need a settlement or else we are all f d on the EHIC card although Spain are fighting for us to have health cover as tourism is its life blood.

off for nap as just biked 20 km nit huge but it’s a start if you’ve read my blog I will know I cycle. 

Top tip if you get Ulcers ask for gelclair to be prescribed it’s nit nicebut ut helps. My oncologist doesn’t do any mouthwashes so for me it’s warm salt water thats all I’ve used ve has. Luckily not lost taste  buds but saliva now weak  at so night then so when I wake today I wanted to yawn !!! Oh no big O NO just stifle the yawn 

reading will come back mine has thus week

bit about me 61 married to John 40 years next June in every daughter Nicola in every grandson James 7 3 step grandkids 23 22 21. How about you

plus my cancer is h p v 16 + is yours or don’t u know if nit ask 

waffle over any questions just ask good luck for next week 

hazel 

Hi Ian

Youve joined our little group of tonsil cancer friends and as Hazel says its a select group. It sounds like you’re doing ok at the moment as you move into week 5 and I would definitely ask about the nebuliser as it really helped my hubby as he got further along.My hubby had 5 cycles of Cistplatin and 30 fractions of VMAT radiotherapy over 6 weeks and we found the 3 weeks after the treatment had finished the worst time as he couldn’t swallow anything and had terrible sickness. 

However he has now been in remission for 2.5 years with no sign of a recurrence and although he still has some side effects- he unfortunately ended up having a neck dissection as the tumour in his lymph nodes wasnt cleared by the chemoradiation- we are back to our usual outgoing lives so the side effects or survivorship as our oncologist calls it is a small price to pay.

Sending best wishes and luck as you go through the treatment and feel free to ask any questions you might have.

Emma xx

Hi Ian

my husband has larynx cancer an just finished 6 weeks radiotherapy on fri it’s been long six weeks an he has done really well as when he first started they told us the downs I wrote him off week two but he still got his voice just about an kept his weight keep on top of your pain his neck is really sore now and got sore throat but they said next two weeks will be tough good luck with your treatment

mansy steve