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Radiotherapy for Throat Cancer

9 Nov 2018 12:25 in response to RadioactiveRaz

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

Radiotherapy for Throat Cancer

9 Nov 2018 20:21 in response to Anchor1707

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 

Radiotherapy for Throat Cancer

10 Nov 2018 14:17 in response to RadioactiveRaz

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

Radiotherapy for Throat Cancer

10 Nov 2018 16:37 in response to Anchor1707

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 

Radiotherapy for Throat Cancer

10 Nov 2018 17:06 in response to Anchor1707

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

 

Radiotherapy for Throat Cancer

10 Nov 2018 18:39 in response to Anchor1707

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

Radiotherapy for Throat Cancer

10 Nov 2018 20:25 in response to Mandy0810

hi mandy just git to hang on to things willgetbbetter I am 10 weeks post radio,eatingbstill difficukybthank god for high calories drinks but little by little am eating and regaining strength 

I have written a blog if yiu want to read the ups  and down s feel free to ask any questions between us we all help each other

www.radioactiveraz.wordpress.com

 

hazel 

 

Radiotherapy for Throat Cancer

10 Nov 2018 23:50 in response to RadioactiveRaz

Thanks to all responses as it is encouraging and therapuetic to be able to share and have others understand this type of journey.

On a positive note I will take the side effects over getiing ride of the cancer and small price to pay.

I had the added bonus of being misdiagnosed earlier this year and said it was just flux and acid from stomach causing sore throat and red right tonsil. Was given Landoprasol and had a major reaction to this medication which gace me 4 weeks chronic diahoreaha then was admitted to hospital for a week with intravenous steriods. Only 2nd day before i left did they look at medication been on and stopped this as they thought root cause!! This made me miss my ENT appt and had to wait further appt.
Had colonoscopy and biopsy for bowels which came back clear for cancer but diagnosed microscopic colitis which was then managed by 3 mths steroids, which touch wood is now under control and has been for months.

Was only at my next ENT appt told they thought it might be cancer and that I was being fast tracked and operated on asap. Tonsil out and ouch! that was not clever and side effects from that gave quite a bit of discomfort. Had to wait on that healing then in for surgery to get back teeth out and again another nice little appetiser before radiotherpay treatment.

Again, overall I have been positive about the whole thing and encouraged that consultant looking to cure this although I get it that life will probably never be total same and some adjustments having to be made.

Im fine with that and just deal with what i have to deal with.

So couple questions in general as I know all different, but when would I expect to maybe see enegry levels start to increase and maybe some gentle exercise on bike at healthclub.
Taste buds will have to wait and see how goes and just adjust to what I find acceptable to eat.
I have vowed never to drink alcohol again and been 149 days since I last had a vodka and coke. The very thought made me shudder.
I have put on some weight this year and although now not the time, want to get some weight off and assume this would be more controlled. So what is the take on weight and calories long term? Assume your not encouraged to intake massive calories/ice cream long term?

I lead quiet life and bit of a homebird apart from my holidays and am very contented person.

Still only 60 next March, not ready to retire yet but think I am going to aim for retiral at 67, god willing.

I know insurance can now be an issue and although there are specialist companies, i'm not sure id want to travel back to Tenerife which is a little further away if anything goes wrong and I do have concerns about the intense heat and will probably look at closer alternatives further down line when more able.
Was told you should really wait at least a year after radiotherpay before venturing abroad again, but does not seem to be the case with all?

Sorry if waffling and not all joined up, but as say, sometimes therapeutic to just chat/type away to others who understand and its nice to offer each other support and advice etc.

Enjoy the rest of your weekend and I will stop being a keyboard warrior lol

kind regards
ian

 

Radiotherapy for Throat Cancer

11 Nov 2018 08:53 in response to Anchor1707

Hu Ian 

simikar afe to me 62 in Feb I retired 8 years ago n hubby ex miner 2 years ago. Re insurance try n get some one who will exclude the dance let’s fsce it we aren’t going to get it again ! Like oncologist says CURE so am taking comfort from that I put nearly a stone in in the weeks waiting for treatemdnt so now lost 2 stone the dietician s views are balanced calories which I adhere to with fresubin n ensure drinks but my view is any calorie I can get down us good. Re exercise I was 8/weeks post radiotherapy when I first got on rollers on bike the achievements of 2 km was unbelievable but take it steady our bodies have been through a tough time. In kastvweek I’ve dine 52 km ok in Spain n 50 km gently walking. 

Inhavent deunk for 9 years can’t do with hangover ,and haven’t smoked for 15 years thunjnwe are just the unfortunate ones. I spent most if summer moan)by jn about the chavs who do both but life too shirt to moan 

3 days left jn Spain so getting bikes out for a gentle ride ni Tour de France hills for me for a whike

happy sunday

Radiotherapy for Throat Cancer

11 Nov 2018 13:32 in response to RadioactiveRaz

Thank you my hubby finished rt on fri been in bed for last two days not feeling too good they did tell us it will still burn for two wks so plenty of rest n sleep

mandy steve

Radiotherapy for Throat Cancer

11 Nov 2018 19:50 in response to Mandy0810

Hi Mansy n Steve

good luck in finishin r t  t it’s a big hurdle ,yes at least the next 2 weeks are hard in my case it was a bit longer. Main thing don’t let him bhim sleep too long as his liquid intake is critical plus food intake. You may find eating gets harder and weight losses get bigger I maintained weight  well lost women throughout r t but in last tb10;weeks have lost over a stone .

just in every thing on Monday when Yiu don’t have hospital ion a daily basis it’s a relief but you’ve also lost a vital,point of contact that we’ve all had for weeks we are basically in our own I have a good Macmillan team if u do please use it 

 

I have  written a blog don’t know if you’ve read it 

www.radioactiveraz.wordpress.com

 

anybquestions or fears just ask, ps u might find u argue we did n it’s nit usual at all for us but it’s frustration u want him to eat he won’t be able  to or want to unwill get there ough it suggest u have a good friend u can lean on 

Hazel 

Radiotherapy for Throat Cancer

12 Nov 2018 12:28 in response to Mandy0810

Hi Mandy

This we found is the toughest time. No more daily hospital visits with the support that offers and the cumulative effects if the treatment which build and definitely get worse before better. My hubby tried to do too much and ended up in hospital fir 4 days so rest and sleep is the way to go.My advice is batten diwnnthe hatches and ride the storm youre on the home straightand recovery will come - slowly but it will come.

best wishes and good luck

Emma

 

Radiotherapy for Throat Cancer

12 Nov 2018 12:30 in response to Anchor1707

Hi Ian

just checking in on you to see how your getting on. 

Good luck and best wishes

Emma

Radiotherapy for Throat Cancer

12 Nov 2018 14:41 in response to Newlymarried

Thanks Emma best thing is sleep as he done really well he feels better today had something to eat n looks better colour 

mandy steve 

Radiotherapy for Throat Cancer

12 Nov 2018 15:02 in response to Newlymarried

Hi Emma

thank you for asking and touch wood, still doing ok ish and being managed via meds etc.

This is the start of my fifth week and met with nurse/speech tharapist and dietician at meeting after treatment this morning. they seem pleased enough with me and I am still manageing to drink around 4/5 litres water a day which they say is a big help.
I am also on Ensure drinks that i find ok as struggling a little with eating as most food taste metalic.
Am ok with liquids such as chicken soup/ambrosia rice/full fat strawberry yoghurt and milkshakes to keep the calories on.

Have had morphine increased and apart from oramorph, take MST sachets twice to have in system all time and they have upped dose on that.
Up during night about every hour to clear mucas/go to loo but lucky enough to fall quickly back to sleep.
Bit more tired during day and need at least one power nap ( around an hour or so) and throat bit sore in morning when I first rise but gets better as day goes on with liquid intake and morphine.

 

Again, thank you for asking and only 9 more treatments to go! but am being looked after by a magnificant team of staff.

kind regards

ian