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 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 

Hi Hazel

and thank you for responsing to my posts as its encouranging to get at least one reponse.

Dont even want to think about tube unless really necesary and doing all I acn to avoid for obvious reasons.

I'll talk to nurse about nebuliser as the humidifier helps and might be something else to help along journey.

Nice you are enjoying yourself with cake / ice creams and calories lol....everthing told to avoid is now encouraged to eat. My mask still a good fit so hoping to continue that way and slowely start to find more things I can eat and will, like yourself, get through this in the end.

Nice to see you are positive. What was the situation re holidays in sun? We cancelled 2 holidays this year and one next Sept to tenerife and been told to wait at last a year before going abroad and hot sun?

Funnily enough, I have read every night as far back as might schooldays and love to read, but find just too tired to read in bed now.My appointment is 9.00am each monrning but get to dept about 8.15 and read on my ipad for around 40 mins so enjoy that.

Your fine with waffle lol and nice to be able to touch base on hear and at least with someone who has been through same kind of treatment and side effects.
I think on the whole Im coping ok so far and long may continue. Apart from eating a little struggle my energy levels quick low and although mentally ok, physically im not really up for much and have a power nap each day, sometimes 2 in addition to good nights sleep.

Enjoy your calorie intake and sounds great !

kind regards

Ian

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 Tina, wonderful news about your husband. I’m supporting a gentleman who finished his radiotherapy just over 2 months ago. I know everyone is different but he is still finding it very painful to swollow sips of water throughout the day (some days are better than others). I just wandered when your husband started to see a difference in this area please? 

Thanks, Jess. 

Hello

I'm new to this forum and would appreciate some advice. 

I am just starting on week 3 of radiation and chemo for base

of tongue and lymph node cancer. My whole mouth is painful and dry. Teeth have been removed. I can probably start on morphine this week and I am wondering if you can still drive and what side affects from it? I am currently driving myself to treatments. 

Do you have any tips? I'm finding it painful to brush and floss my teeth. Strange taste in mouth. Overall painful. 
Trying to stay positive. 
Karen C 

 

Hello

I'm new to this forum and would appreciate some advice. 

I am just starting on week 3 of radiation and chemo for base

of tongue and lymph node cancer. My whole mouth is painful and dry. Teeth have been removed. I can probably start on morphine this week and I am wondering if you can still drive and what side affects from it? I am currently driving myself to treatments. 

Do you have any tips? I'm finding it painful to brush and floss my teeth. Strange taste in mouth. Overall painful. 
Trying to stay positive. 
Karen C 

 

Hi Karen C

i am Hazel I had 35 radiotherapy sessions and 2 chemotherapy sessions for tonsil cancer. Everyone’s is different I certainly couldn’t have driven but I had a hours drive almost each way. As far as I am aware driving and opiates are  not advised. For teeth brushing I got from Amazon curaprox toothbrushes the softest I could find 5400 bristle and only use duraphat toothpaste and still do .you can get biotene mouth gel to rub onto gums and cheeks it may help. I have a blog www.radioactiveraz.wordpress.com it may help you there’s lots if tips and links to other blogs. 

Welcome to the club no one wants to join m the treatment is brutal but yiu are having a lot less radiotherapy than many if us so hopefully yiu won’t be too bad.

hope this helps 

Hazel x

Ah! Thanks Hazel. Thanks for advice. I'm going to get the mouth stuff you recommended and read your blog. Can't get motivated to get out of bed yet. 
cheers

Karen 

Hi Karen

I have also attached my blog that you might find helpful along with Hazels.

I doubt it would be advisable to drive while on morphine as one of the side effects would be drowsiness. I would check as I am sure it will be on one of the banned drugs re new driving laws.

I'm no expert but would probbably advise against, but check even with consultant or support team who might be able to advise better. I drove while on morphine a couple years ago and I seemed fine.

And yup, stay as positive as you can as that goes a long way in treatment and recovery.

Here to help anyway we can if you need it.

radiotherapythroat.home.blog

regards

Ian

Hi Karen you have come to the right place no one knows more about this than Hazel, I asked if I could drive during treatment and was told yes, I was given Pregabalin, Oramorph and liquid Paracetamol but i didnt get on with Oramorph because it gave me chronic constipation so i didnt take it for long.

Stay postive weve had one of the most treatable cancers.

Dave

Hi Ian

Thanks for your reply. I'm taking on all the advice I can get. I will certainly read your blog. I want to try and stay off morphine as long as possible (although I won't be a martyr  to pain) so that I can drive to treatment. Unfortunately my husband died two weeks ago and I am struggling on my own. The hospital is difficult to get to on public transport and Uber us £18 each way. 
Thanks again 

best wishes 

Karen

Thank you Dave

I am so pleased I joined this group. Getting lots of good advice and I have already acted on buying mouth stuff. 

I have all of the above apart from oramorph but should have it this week. The Pregablin I only take at night as it completely knocks me out. Good to know driving is ok. 
Trying to stay positive but my husband died two weeks ago. I started treatment the day he died! 
thank you again

best wishes

Karen
 

So sorry about your husband and then you get diagnosed too, life can be so cruel.

Dave

Oh Karen so sorry to hear about your hubby how cruel can life be . Just ask anything in here ine if us will get back to you. Between us all we are fountains of knowledge most of it useful . Do you have a Macmillann or cancer nurse assigned to you ? If so they are also pretty good.

sending a Sunday hug. If u want to send a friend request please do 

Hazel x

Adding my support Karen, devastating times for you, but on this thread, with Ian, Hazel and Dave, you've got the best support you can get. My heart goes out to you, in my prayers (many dont, i do, no harm in it ). Best wishes, Graeme.

Hi Graeme 

include you in the weath if shared knowledge we all have ! 

Nithing wrong with prayers but I took help wherever I could get it including carrying a bottle of holy water from Lourdes with me.My friend in York her vicar included me in prayers every week ,In the words of Tesco every little helps.

Hope you are well ,as u may have guessed our flights got cancelled but fingers x for ferry mid September 

Hope you are well Hazel x