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 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

Hi Ian 

you will be fine this week they use the mask won’t fit as an way of keeping you eating . My radiotherapy team said in last week I had lost 1 mum off my shoulder so I ssud what do U want me to do I could eat like a horse tonight no guarantee that it would go on my shoulder. ! They said fair comments we have to bully h to eat but they have ways of adjusting the masks if need be. 

I found the first few weeks after treatment was when my mouth was at its worst and didn’t get any solid food down at all . Although we look forward to treatment finishing its scsrybti loose the daily contact that we’ve had for weeks just keep going what you are doing experiment every day. Today plain mineral water has come back to me after 9 weeks if it bring like chalk! And only drinking soda water n occasionally peppermint tea. 

Good luck for next week remember make sure you have a decent supply of tablets as u found my drs pretty useless and left me 6 days without painkillers luckily I had a secret stash ! But they didn’t care I’ve unfortunately got a complaint in against the drs as they also ignored a request from hospital for  56 bottles of endure ie 2 a day fir s month changed it to 12 random ones doh!!!! Stress levels went through the roof.

sntest I’ve got good Macmillan nurse n dietician 

once sgsin good luck

hszel

Hi Johnny 

mushy pea s I reslky can’t eat finding fish seems to stick although trying salmon tonight. Today plain mineral water has become drinkable who knows whether tomorrow will be the same! 

Akthough pork pie at lunch time was delightful cheesecin tiastbgir breakfast as well   Darent hsve orawns had some while having chemotherapy n made me do I’ll darrntvtry them not having much luck with pasta finding it sticks n anything with tomatoes is a no no too acidic . Keep in touch with tips we will get there in the end just didn’t think recovery would last this  long. 

Are u working I retired at 53 luckily n hubby worked underground and finished at 58 so we have personal pensions n he has his pit pension so we get by. I drive fir first time yesterday since treatment started frktvdo goof

take care

jsxrl 

Hi Johnny 

mushy pea s I reslky can’t eat finding fish seems to stick although trying salmon tonight. Today plain mineral water has become drinkable who knows whether tomorrow will be the same! 

Akthough pork pie at lunch time was delightful cheesecin tiastbgir breakfast as well   Darent hsve orawns had some while having chemotherapy n made me do I’ll darrntvtry them not having much luck with pasta finding it sticks n anything with tomatoes is a no no too acidic . Keep in touch with tips we will get there in the end just didn’t think recovery would last this  long. 

Are u working I retired at 53 luckily n hubby worked underground and finished at 58 so we have personal pensions n he has his pit pension so we get by. I drive fir first time yesterday since treatment started frktvdo goof

take care

jsxrl 

Hi Hazel,still in employment but not worked since treatment started on 2 July.Will be working til 67 I'm afraid due to naff pensions.Also have expensive hobby so not working is not an option,besides I like my job and I'd get bored,I  need the routine.Dont expect to be back at work til after Xmas really.Company have been good to me though so not had the worries that some folks have.Tried gluten free brown bread yesterday with some soup and it went down well.

John.

Hi Johnny 

i will be 66 when u get them oittance if state pension so in meantime spending daughters inheritence !!!!LOL Onkyngot the one daughter and she will certainly spend anything we’ve left. 

I worked in travel for 35 years so travel was our big expensive now we have a long term rental on an apartment in Murcia 5 mins dorm sea and try n spend about 16 weeks a year there other than that live quite cheaply although after this experience it’s a case if unwant simething *** ut buy it it was certainly a wake up call.

your hobby motorbikes by any chance !!!

we cycle that’s been our main hobby niw just returne dfor 19 days At apartment but  oncologist gave me permission to go and I actually managed to bike 100 km it was so brilliantly just having the freedom .

strangely bread as long as toasted I can eat spread with lurpack but will look for gluten free n give it a try 

The salmon fillet was perfect 3 mins a side in frying pan then popped in hot  oven for 3 more and I ate it all how was pasta and prawns.

hope the weather isn’t getting u down I was just pleased treatment was  in the summer .

pleased your work has been understanding like yiu say nit all of them are 

keep in touch 

hazel

Hi John 

My hubby definitely found gluten free was the way to go to be able to manage bread, biscuits etc - bit of an acquired taste but he soon got used to it. 2 1/2 years later he can manage most things now even a crusty baguette! with loads of Evian water( his water of choice ) to help !! 

He worked from home all through his treatment- 5 cycles of chemo- 30 fractions if VMAT radiotherapy and a neck dissection as he has his own business that is computer based so he could  even work whilst hospitalised with sepsis and extreme vomiting - though I wouldn’t recommend it ! 

Keep up with the eating - trial and error we found as everthing tasted different from before.

good luck

Emma 

Hi,Hazel,yes I'm motorbike mad,have been since 17 and I'm 60 soon.Not been on the road bikes since about week 4 of radiotherapy and not been track riding at all this year with this thing.And yes I found toast and lurpak an easier option than dry bread,with copious amounts of tea!!!  Funilly enough I've not tried gluten bread toasted although I might soon as I miss beans on toast an awful lot. I do have about 8 different pensions but they won't pay anything like my current earnings so I'll stick at it so I can enjoy life to the full.Hope you get to enjoy lots more time out in Spain.We're Greece fanatics and usually go twice a year but only once this year thanks to this thing!!!

Hi,Emma,I got the gluten free bread tip off another thread on this site that I read through,in fact it might have been off one of your posts as you're username looks familiar.If it was then thanks.The baguette bit gives me hope because I miss my bread the most,a lovely bit of bloomer with bacon and egg on I would seriously kill for so maybe just maybe in the future.Yes some things do taste strange.

Never thought of gluten free and not sure benefits but might be worth a go.

I'm lucky as well in that I have been able to work from home throughout treatment and found quite therapuetic and productive. Also managed to get power nap when i needed it.

Again lucky as computer based and managed to access work networks from home so worked out well.

I dont think I would be able to work if any manual work involved.

4 treatments to go then hopefully on the mend and I am longing for either fish n chips or chicken korma n rice, just to make change from the esure drink menu of banans/cho/strawberry.

Soup/custard n rice and look forward to something little more tasty end enjoyable espacially when cooking is a hobby of mine and make all sorts cuisine from scratch, but sure in good time will find taste buds again.

its funny how you take things from granted when you eat what you want only to find them taste metalic when you normally enjoy.

Small price to pay though short term.

onwards and upwards

regards

Ian

Hi Ian

gluten free is eadier to swallow as its made from semolina flour which breaks up more easily and with less saliva making it easier to swallow. On the downside ut can be cardboardy and usually has more added sugar but thats not always s bad thing when trying to maximise calories. Warburtons New bakehouse sourdough or tiger cob from sainsburys or waitrose is the best ! Steer clear from tesco own free from range ! really cardboardy . Genius products are ok to but all of the crumpets are really heavy ! 

Emma 

Hi Ian 

good luck for tomorrow your last day of radiotherapy!well done in reaching this far ,remember ask if yiu need anything or any questions .

i brought my mask home sick souvenir I know she’s hanging in the garage some hospitals allow you to bring them home just thought I would let you know that one .a lot if people don’t want them then afterwards say wish they had kept it. I look at ut this way it saved my life fingers x.

take care keep eating , watch out in nuggtbfir mouth getting stuck tip I gargle gently with warm salt water .taomwater too harsh for me so I used mineral in kettle and mineral water to drink and cool it down lanyway enough if my waffling

hazel 

Hi Hazel,

Thank you and one day to go !!

I already have a mask as 1st one didnt fit and they let me take it home, but im not sure I want it around the house but thanks for letting me know.

Stuggled past couple days with eating and from consipation to taking laxido then diarahhea.

Feeling sick past cpl days and stuggle to get anything down so will ask for anti sickness tablets tomorrow as well.
I have booked 3 weeks annual leave from Friday and looking forward to treatment being over as its been a long shout and ive had enough now lol.

Sleeping more than normal past couple days, but just going with flow along with meds and trying to get through final hurdle. Aware that i will continue to feel naff for some weeks tey, but hoping to at laest be on te start of recovery once treatment stops

kind regards

ian

hi again.

lol...day out and maybe wishful thinking..

I have 2 more treatments to go and finish on Friday lol

kind regards
ian