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 

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

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

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 

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

Hi Ian

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

Good luck and best wishes

Emma

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 

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

Hi all,

Just finished week 5 treatment this morning and one more week to go.

They have upped the morphine and am now on Fluconazole for oral thrush they found yesterday.

Feel like a chemist here with all these meds/mouthwashes but its all fine and would say genrally still ok and not experiencing anything I was not expecting.

Little more tired and quite bit mucus comes up during night, but get back to sleep quite easily.
Not been on solids all week as they taste gross and metallic and have been sticking to liquid/soft meals.
On Ensure drinks that they gave me and was told equivalent of a small meal plus I can eat chicken soup/ambrosia rice/custard and full fat yoghurt which I enjoy.
Got weighed yesterday and surprisingly had put on a little weight, which they were please with as was I.

All in all not really complaining and on the home stratight for treatments next week with only  5 more to go, although I know the side effects will continue, at least no more daily treatments.

Was also given a nebuliser yesterday and have used a few times, but not really sure if making any difference. Does anyone know if I can put a couple drops eucalyptus in with the saline as love the smell and alwasys thinks helps clear head.

Thank you to all that reply as its helpful to share my experience as not only do I find it therpeutic, i really do hope that it can help at last one person. Treatment/side effects etc are not brilliant but you get through it and am still trying to stay positive.

kind regards

ian

NHi Ian congratulations on week 5 I had 7 weeks radiotherapy n 2 sessions of chemotherapy.i burn eucalyptus oil in an oil burner my MacMillan nurse advised ninto putting in nebuliser for fear of it burning the throat ,suppose up to  you but wouldn’t put too much in. 

Weight wise I started loosing after radiotherapy but everyone is different just keep doing what you are doing. I am sat here dipping a walkers shortbread into a latte if yiu would have told me that 2 weeks ago I wouldn’t believe yiu things change daily. For tea u managed mash with lashings of lurpack a smallmyorkshire pudding cabbbage and stew gravy but meat is a hit and miss .for lunch 1/2 a steak pie with soup as gravy went down .

tablet wise still on ibuprofen for swelling cocodomol 2 tabs and have reduced ora morph to 2.5 ml from 5 daily  .

good luck for next week ,ps started reading at night time this week plus been shopping baby steps  just taking a day at a time ,some people get little side effects some like me get longer side effects  git my scan late December with results early January aren’t worrying about them as can’t  worry about something I can’t influence  

just a word be careful of people who have had flu jab or git cold as live  vaccines exposure isn’t good for us  at the min

enjoy weekend 

hazel

Thank you Hazel and like the sound of how well you are progressing with baby steps and on the right road.

My den looks like a chemists and on so many meds for different things but not too bad. Would say just bit washed out just now.
I agree re cold/flu and one of the things I have little concern over as would really struggle with mask and flu!

I know still quite a journey ahead but will be glad when the treatment stops next Friday and then take it from there.
I am trying hard to keep weight on during treatment and forcing down liquids as muc has I can .Struggle with any solids as tastes so awful.

At least reading your steps does give me hope for my first tasty fish and chips or chicken korma and rice..mmmmmmm

Think your right and will just keep to saline in the nebuliser

kind regards

ian

Thank you Hazel and like the sound of how well you are progressing with baby steps and on the right road.

My den looks like a chemists and on so many meds for different things but not too bad. Would say just bit washed out just now.
I agree re cold/flu and one of the things I have little concern over as would really struggle with mask and flu!

I know still quite a journey ahead but will be glad when the treatment stops next Friday and then take it from there.
I am trying hard to keep weight on during treatment and forcing down liquids as muc has I can .Struggle with any solids as tastes so awful.

At least reading your steps does give me hope for my first tasty fish and chips or chicken korma and rice..mmmmmmm

Think your right and will just keep to saline in the nebuliser

kind regards

ian

Hi Ian 

at some point you will feel dried out with saline tip u can use just plain water still effective but doesn’t dry your mouth .

luckily my taste buds never went but that works against u as well if h can taste everything sometimes u just can’t eat it. Met a guy 3 weeks behind me and he was eating everything fish j chips curry’s chillies he was lucky didn’t get muscosis although lidtvradrlodt taste d buds good luck with flucozole I ended uo  with nystatin as flucozle didn’t clear the oral thrush. Tonsil cancer I call it the cancer that just keeps giving us problems. People can’t understand  why we can’t eat get comments my friend had breast or / bowl cancer and  could eat!! Umm mouth radiation stops u eating not all cancers are the same !!

one tipfor trying to get food down is pretend u are a chicken and throw you head forward like u are pecking not a pretty sight but can work !!!

night night hazel ps am also a branch of boots the chemist !

Hello there.Just came across this site this week whilst trying to find out about squamous cell carcinoma of tonsil after being diagnosed with it in June this year.I intentionally avoided googling anything whatsoever to do with cancer and indeed was warned not to by oncology staff.Glad I did as it left my vision clearer and helped me focus on my recovery.Anyhow,today is the 12 week anniversary post treatment and after reading a thread started by gamma ray Gary (vatch) it struck me that  everyone has had chemotherapy.I opted for an alternative called Cetuximab,one of the so called targeted therapies.I just wondered if anyone else had been offered this course too.

John.

Hi john I am also 12 week post radiotherapy todsy I gad cisplatin. How are u feeling are u eating yet ? I am just starting hsve read vatch v goofd I also have a blog l

www. Radioactiveraz.wordpress.com last blig is first do scroll down if u want to read from beginning  

hazel

Hi Hazel,yes I'm eating in a fashion.As you probably know,it's 2 steps forward and 1 back at this stage,slowly slowly catchee monkey! Some days you can eat with relative ease and the next it doesn't feel too good.I had the peg fitted before any treatment and I still have it thank good as I didn't eat for weeks.I was back at Weston Park hospital last week after 4 really good days followed by 2 worse and 1 much worse only to find the dreaded thrush is back (3rd time),so another fortnight of flucanazone.I put it down to loading up on all the sugary crap like biscuits and deserts I've had to try and gain weight back.

John.

Hi 

western park Sheffield ? Ok was st james Leeds live half way between the 2 of them so 90 min journey when rush hour. 

Yes I am also on my 3 rd round if oral thrush if fact nystatin is in my repeat script !!

lol

yes suppose it’s the sugary stuff this week I discovered I can eat chocolate !!!!!!!!!! So 2 hero’s equals 98 calories! Nevertheless thought I would be counting calories to eat instead of diet. 

Do u have a scan date yet ? Mine hopefully between Xmas n news years  will find out on the 26 th 

keep trying to eat I am finding meat pies are edible as long a slice j dip the pastry in soup !!!! Weird but fresh meat is a big no no answer I miss fruit so much 

take care

hazel

No peg for me not given at Leeds ended up With feeding  tubes for 45 days lost 18lb in weight bulkedmup when diagnosed put nearly a half a stone  in was eating magnums morn8ng noon n night as u knew the weight would come off .

I lost 30lbs or 14kgs if you like.Have a hospital follow up on 20th December but they said scan will be before that.

Hi Johnny

good luck for the 20th keep me posted. Strange how each hospital consultant does it differently guy who I went through treatment with has his scan next week but my consultant waits 4 months as long as results are what we all hope for fingers x. 30 lb *** bet you’ve had to buy a new wardrobe of clothes !i am not too bad as am just under 10 stone n still get in my clothes MST have been a snug fit some if them prior to cancer visiting  me !,,,lol

kerp in touch just had half a pork pie warmed n dipped.  Soup strange how some things are easier to eat but last night chicken was a big no no even with gravy. 

Plus I am dunking biscuits in coffee which I have never ever done but needs must xx

take care

hazel 

Hi,Hazel I've found a nice small fish fillet done in foil to keep it moist and some tinned mushy peas goes down easy.Tried Smash and liver with onion gravy the other day and I managed half the liver but I braised it too long leaving it dry,still it went down which felt like an achievement! Seems to take forever to finish a tiny portion.Going to try some prawn pasta later.

Im try to keep the calories on as much as possible so it doesnt effect the mask having to get re made/ineruption of treatment etc and have found various things to do that without solids so far.

have home made soup that i blizt and puree and also blend a chicken breast though it as well to try and get some protein and  goodness in as well.
I have been given ensure drinks to take twice a day and also take full fat yoghurt and pots of fresh custard/ creamed rice/milkshakes.
tatstebuds not great but I manage the above ok.

I have my final week of radioatherapy starting tomorrow and wonder what that advice is regarding diet etc after the treatment stops?

Im just trying to get through this week re calories etc but does it matter so much after treatment as long as body has daily intake of something as well as plenty fluids

regards
ian