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

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 

Hi Ian 

baby steps are the way to go. As for food try anything and everything it’s the only way ,some things yiu can tolerate one day and the next day will be vile !

the endures are still doing my head in but head down and drink. 

Toda6 I thought if you had fish n Chios from chippy first time in years managed a quarter of fish before it was cold n a few Chips  ditto .as yiu progress yiu will find that it takes so long to eat anything that it’s always cold u can re heat so many times before you’ve had enough but inward n upward . Mashed potatoes n stew gravy the meat no matter how small can be difficult.

retsil therapy alwats helps 

how’s the mucus plus watch out for oral thrush it’s around now that yiu May get it yiu will kniw as it’s painful 

good luck keep in touch

Hazel 

Hi Hazel,

Thanks for posting and keeping in touch.

Mucas, I would say a little better...not dramatically and still sticky mouth a lot, but do feel some improvement.

As for oral thrush....they did think I had at one point but was swabbed and came back negative so one less medication to take.

My doc prescribed to the chemist direct a months supply worth of Ensures !!!!

lol chemist scatching head and double check as so damn many, although Im hoping I would need to use them all.

So all good I guess ish...sleeping more than a hibernating bear but again slowly slowly and will get there in the end

kind regards

ian

Hi Ian 

we had to figh5 to get the dr to prescribed any food supplements ! They tried to fob me off with 12 strawberry amen shake some use they were script was for 5 a day x31 days he issued me 12 125 calories a drink for a month m!!!! Umm  what a battle we had ! Had to get hospital,involved and c.c.g. In the end it was all due to budgets which what we  thought but didn’t help me one little bit at the time .am dreading if I have to go back but fingers x I am realy only having 2 a day and every day an eating more .plus am buying my own Ensure powder s to help 

sleep is ok I still have 2 naps a day and the mucus is still with me find warm peppermint tea helps  to thin it down ,but might have said it before the mucus is our bodies way of protecting our throats. No help I know 

enjoy rest of weeken try nit to do too much retail therapy

hazsl

Hi Hazel,

Why such a battle for drinks?

My docs really supportive and never batted an eyeline and ordered a months supply with no issue.

I see them as medicine as its not something one would volunteer to drink on an ongoing basis.
Aware budget restraints and they are actually quite expensive. I think I worked out from Amazon they are around £2 per drink so 5/6 a day x a month is expensive.
I hope I will not need them all and wil return what I dont need but if you need medication you need medication.As there is a reason for prescribing them, Im not sure how practical or useful handing out 12 drinks for the month are?

At least some improvement re mucas and im pleased at least one sign of improvement but as for sleep its a funny one. I can be watching something for example then its a wave comes over me that I just need to go to bed. Often just power naps for a couple of hours then im fine again, but I find the need to sleep is still there quite a lot and would say Im with you on 2 naps a day and very occasionaly 3.

How long do you nap for and do you get a full nights sleep?

Glad you keep posting as its good to bounce off someone who has been there and knows exactly what I am talking about re symptoms.
You have done great tho Hazel and interetsting how your body is slowely adapting and how you experiment with food intake to see what works for you and what dosnt.

So one thing I wanted to ask you was your experience with the morphine.
Ive been on oral morph for some time now and around 4 weeks on MST crystals as well. The slow releasing MST, I thought wasnt working until I reduced for a day and then got some pain back in mouth.

So basically, if you dont mind me asking, what do you take in way of morphine now and was it done on reducing dosage? Im keen to come off but obviously will do so in conjunction with medical advice.

You still pie girl? lol

enjoy rest of your weekend too and apologies if I talk too much.

kind regards

Ian

Hi Ian

Firstlybthe oramorph or my best friend in hour if need as I called it.lije u didn’t want it but didn’t want the patches either  have been in it since middle of August .i tried about 4 weeks into recovery tomreduce ut but in too much pain. So 2 weeks ago. Week 12 I’ve started reducing ut every 2/3 days was taking 4 times a day 5 mls sole to Macmillan nurse they said slowly do it so yesterday I was down to half a mill 3 times a day and 1 ml at night. Thus morning I didn’t take any been 4 hours and am ok somwatch thus space will takenhalf at lunch time none tea time n half bedtime slowly slowly monkey. Co codomol next but will leave anither week Before I address these 

Napsdown tin25 min after lunchtime tablets and power nap go to bed fully dressed n snap 25 mins later up same atvtra time tablets 25 mins .

nightime I see unwere up at witching hour 0400!!!!

it will stop but around week  10 inwakemupmaeound 2 am 3 am but now lean iver getba drink of water 

Spray saliva in my mouth woke then e at 0615 tablets back to bed til 0845 it does get better it’s just forcing thatbsip of water in.

as for drs onkybresponce ingit was budget budget wouldn’t mind proormtomthus I made an appointment to see one if the partners as I don’t go to drs from one year tonnext oh he made all the right noises but when it came down to it it’s all about the money .the hospital were disgusted but likewise they couldn’t prescribe as didn’t want it from there budgets ,got a 6 page letter addressing my complaint with every other line being if we have let undown we apologise fat good that was when I needed the drinks yes expensive we are buying complan toneek them out as i don’t want to go back and face anither battle  

thank you for complement s will take them n if u can help anyone I will willingly  yes still the pie girl meat n potato for lunch today and wait for it bbq spare ribs from Tesco for tea the meat is surprisingly soft just don’t put the extra sauce in 

keep in touch 

don’t be in a rush re oramorph it’s there for a reason I found out the hard wayb3 days pain for trying to be brave slowly soowyHazel

Im 8 sessions in of 30 radiotherapy for throat cancer and feeling nausious pretty much all the time now, I wasnt expecting this as one of the side effects has anyone else has this symptom?

Hi Oscar

poor you I was lucky and never had that problem. Please mention in to radiotherapy team or your nurse there will be something y can take. I jkniw nibbling on a ginger biscuit before n after may help. Sorry couldn’t be more use x good luck  at the weekend you hit double figures that’s a milestone on its own. 

Ask if u need anything else

hazel aka RadioactiveRaz 

Thanks Hazel Im going to mention it to my team nurse today. 

Dave

Hi Oscar

My hubby had chemoradiation for tonsil ca and had severe nausea all the way through. We bought some seabands - acupressure bands - from the chemist that seemed to help. Speak to your specialist nurse re your anti sickness meds as there are several different ones - Metaclopramide, Prochlorperazine,Domperidone so another may be more effective. Acupuncture can be helpful so maybe seeif your lical cancer support centre offer that as an option.My hubby ended up with a patch form and a snall dose if Nozinon at night- I dont jnow if you have a PEG but if you do try getting liquid form and put it directly in via that - it can help. Unfortunately bausea us very difficult to manage and he ended up being admitted and having a metaclopramide syringe pump to get it under control.

wishing you loads of luck 

best wishes

Emma

Hi Ian 

how are u doing ? Another week post radiotherapy,you won’t realise but slowly u are getting there. Hope the ensures are still keeping yo7 going. At moment I would say dry mouth is the worst symptom I am having. Food is deffo getting easier so there is light at the end of the tunnel.

hope you’ve nit done too much retail therapy this week !

take care

Hazel

Hi Ian 

how are u doing ? Another week post radiotherapy,you won’t realise but slowly u are getting there. Hope the ensures are still keeping yo7 going. At moment I would say dry mouth is the worst symptom I am having. Food is deffo getting easier so there is light at the end of the tunnel.

hope you’ve nit done too much retail therapy this week !

take care

Hazel

Hi Hazel

Thank you for asking and yup another week post radiaotherpy

So my latest weekly update post radiotherapy ( 3rd week) I would kinda make the following points and hope helps.

I feel in many ways im progressing, especially the mucas which has all but stopped but I am similar to yourself and have really constant dry mouth. Can sometimes bring up spit but my mouth is constantly dry with literally no saliva. Its a funny sensation and I even gor prescribed Glandosane which is a synthetic saliva, but its not really any good and in some ways drys mouth more.
I had my first appointment all the wellbeing clinic for post check up and they are delighted with my progress and think I am ahead of the curve but still a long way to go.

They were impressed I am managing 4 Ensures a day but I see them as medicine but I now have to start to try and eat little extra things on top. It was explained my body is still running a marathon and the more fuel it gets just now, the better the recovery process, so I got some little micropots of custard, rice and am going to try full fat milk n soggy cornflakes. Even managed 2/3 little mini curly wurlys lol

So basically been told, eat !.....even if you dont enjoy just now...eat....even small amounts to help get fuel in body as well as keep drinking plenty water. Was also told taste buds may never come back exact same but its a matter of adjusting and mouth may well be quite dry long term.
So thats good advice Im goinf to try and adhere to and at the end of the day, the adjustments we have to make are a small price to pay for getting this thing hopefully cured.

Still on quite a bit of morpine but feel throat, apart from dry, is getting better and easier to swallow and told will be looking to reduce this after new year.

Sleep is still often and quite a few power naps, usually a couple of hours at a time.

So all in all, I do feel progress within myself although I agree this constant really dry mouth with no saliva a symptom that has progressivly appeared worse this week.

But still positive and to leave on a positive note....Onwards and upwards !!!

kind regards

Ian

RHi Ian

on Monday I am 15 weeks post radiotherapy never thought recovery would take so long but slowly slowly.

tips for dry mouth my dentist prescribed the following they do help 

biotene dry mouth gel liberally rub onto gums n teeth before each nap  apparently k y jelly also works but I ain’t asking for that. Lol

A.S salivia sprays I carry one with me one in bedroom use on a night niw when I wake I can get away sipping water thrn dprsy in to mouth gives me st least 2 hour s solid sleep.

from boots dentist can’t prescribevit biotene mouthwash I have found a even gentler one online bioxtra dry I use that again before nap time.

tastebuds bitter sweet for me I never lost them which can atvthecstsrt make it harder as I had taste but just couldn’t get things I like down my throat.

around yourvstage I started on the following 

knorr chickennoodle soup once cooked strained the noodles out then a matter of finding the right heat for your mouth.

baxters consommé also helped but  home made soups I just couldn’t eat still struggle with.

big breakthrough was the inside of a mini pork pie senesce of achievement was great  

congratulations on curly Wurley it’s the little things that give us a lift.

i have now been 36 hours oramorph free touch wood am ok thus morning substitute d a 30 mg co codomol with a 8 mg so in 26 days I should be in 8 mg tablets then work down to paracetamols.

rnjoy seekend

hazel

l

Im just starting to get the dry mouth problems after 9 sessions, I cant imagine what i`ll be like in a few weeks time, not feeling sorry for myself Im just a bad patient.

Dave

You are doing great Hazel and its good to have someone ahead of the game.

and lol..yup....I aint asking for ky jelly from chemist..."its for my mouth"..." yup sure it is " ;lol.

nah I'll leave that one and just keep drinking plenty water.

I'll see how I get on over weekend with my wee tubs of calaries, but I guess its inspiring to get a good report card at this stage and might experiment a little to see what  i an tolerate now I have been told too, even although I dont particularily enjoy.

Have a great weekend and I still reocmmend retail therapy !

Dave

Dont see yourself as a bad pateient, its one of these things and unfortunate side effect. Only advice I would give over and oboive Hazel's is to drink as much water as you can. I try and drink at least 3-4 litres a day. Sometimes you cant be bothered but force it a little if you have to. I was told that it definately helps the healing and recovery process.

i wish you well

kind regards

ian

Hi Ian

Its great to hear youre still progressing well and as you rightly say its a slow process. My hubby is now 3 years post diagnosis and 2 1/2 years post treatment end and things do get better. At the end of the chemoradiation he could taste nothing - and I mean absolutely nothing which made eating so difficult. He can now taste most things though they often taste different to before. He had a real sweet tooth but now prefers savoury especially salty things. He can swallow anything even crusty baguette! So long as he has water but cold foods like ice cream switch his taste buds off completely. The dry mouth gas improved considerably but he still had decaf tea and coffee as the tanin and caffeine seemed to make tge dryness worse.

Keep olidding on - trial and error ! 

Good luck and best wishes

Emma xx

Hi Emma,

Thank you for your kind words and encouragement.

Im so pleased to hear progress regarding your husband and its inspiring to know that as you say, keep plodding on and it does get better and although some permanemt slight adjustments, still well worth it.

Have a great weekend

kind regards

ian

Hi Ian

deffo if  I can keep drinking the water. Plus remember what yiu can’t tolerate one day the next day or week you will be able to somits trial and error butbkeep going in the right direction

Happy retail therapy ,hope yiu are buying useful things !!!!

hazel 

Hi

No you aren’t a bad patient ,just remember  everyone of us is different if you can drink water keep drinking it really does help. Unfortunately I couldn’t drink it apart from peppermint tea for over 2 monthes it made my mouth like chalk , I could manage soda water which was ok but washing food down with it was horrid. 

Get as many dry mouth products as your dr dentist and nurse will prescribe , a good tip is get them all to prescribe something if at first they dont work keep,them as I did and eventually you will be able to use them. To start with the saliva spray smell of fish so I refused to put jn my mouth but now I use it and it gives me ok broken sleep but no longer am I awake for hours at a rime

keep plodding on if you haven’t read my blog it’s www.radioactiveraz.wordpress.com more tips and moans on there if yiunhave read it thank you.

remember next week start if anither week nearer to finishing 

hazel 

Thanks for the words of encouragement I`ll up my water intake, Im doing the mouthwashes after eating and every two hours as I was told by the nurses, Iv got a horrible taste all the time now and food just doesent appeal... from a food lover thats quite a statement. Iv got a white coating around my Uvula (dangly thing) and its swollen..hope its not thrush..definatley feeling sorry for myself now..:)

Dave 

Hi Dave

umm could well ne thrush it’s quite common no matter how religious we are at mouth cleaning the tongue ceases to donits job until u can’t use it we have no idea how much work it does do.

ive had oral thrush on and iff all the way through and my mouth accordingbtindrs is one if the cleanest they had seen.

i bought iff Amazon 3 toothbrushes curaprox 5400 soft bristles they really do work think about £10 for 3 .if you find the duraphat toothpaste too strong which I did changebti mildest sensodeyne you can get.

re thrush keep an eye on it ask in Monday they should prescribe Nystatin for you , thrush can make it painful to eat and drink which is the last thing you want.

i am 15 weeks post radio and still having some issues but lunchbtodaybwas a bacon sandwich in a panini bliss ,there’s is light at the end if the tunnel.

just don’t suffer in silence see the radiotherapy team in Monday. Are you having chemo as well ? How many mire radiotherapy I had 35 sessions 

Try toneat as it’s possible thatbin a few weeks time yiu can’t ans yiu need to keep your weight in

take care Hazel