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 Hazel,

Thank tou for your words of encouragement and thats a great idea of mixing ensure with water as gives both fluid and intake of calories at once. Defo going to try that so thanks for that.

They are are not too bad, but after a while bit naff and 6 a day!! wowsie lol

I know its just another part of the journey and recovery period and will get there in the end and soo nhope to be in a position to enjoy some nice food again that I can taste.

I have a spreasheet made up and log everything as its a lot to remember every day with so many different medications/fluid/nutriant intakes so makes life little more easy to manage to ensure ( pardon the pun) that all are taken when meant to.

I must be costing NHS a fortune with all this medications/supplements etc and one of the reasons why we should all be so grateful for our wonderful NHS system.

Not sure what situation is elsewhere, but in Scotland we pay nothing for any medication or prescription we need, no matter what or how many.

Hope you continue on your journey as you seem to be doing amazing and wish you well and keep up your fab work. You have been great and have helped me along quite a bit with your words of encouragement and tips and I agree if you or i can help at least one other person with this journey. it is so worthwhile sharing.

kind regards

ian

Hu Ian yiu are welcome 

I had spread sheets galore logging medicine n food still log my food intake calorie wise Took everything to dr st hospital he appreciated it as well could see at a glance what I was doing .

totallybagree re n h s don’t have to pay for anything jn engkand either ,my dressing for my burn in neck Cost £70 a time and never ince did hospital say no I did take spare ones back but they said they would have to throw them away as once they have  left the hospital classed as contaminated which is a shame. Likewise the nebuliser they didn’t want that back either which seems a waste of money .

i have had a few problems with dr and budgets wouldn’t prescribe me Ensure wanted to do ameys I couldn’t drink them they were grainy so that was a battle that I eventually won .

just had 2 Yorkshire’s pudding and a bowl of corned bees hash so it does come back eventually just baby steps all the way .

Thank younfir kind words keep in touch and the ensures are deffo better thinned down 

hazel x

Hi Ian

how organised are you ! Spreadsheets for everything we didnt even think about using them to keep track. We can definitely understand the flat feeling when you finish treatment. I think youre so concentrated on getting to appointments - seeing Medics and dieticians etc when you finish you feel abit cast adrift. I have to say our experience with tbe Specialist Macmillan nurse was non existent. We met her in tbe clinic on diagnosis and that was it - no phone calls or appointments so if you gave a good team then use them for advice.

Keep on with the ensures as you may still have a tough time to come in the next week or so. My hubby was at his worst by about day 12 post treatment finish- so sleep ,eat and get as mych rest as you can.

Keep letting us know how youre doing and you’ll soon be on the home straight.

best wishes

Emma

Hi Emma

Many thanks for words of encouragement and will be getting plenty rest and sleep.
Will have to soldier on with the ensures but hoping to exchange one or 2 a day with the same amount of calories and tin ambrosia custard/rice and imagine as long as the calories goin in , thats the main thiing.

Its just another little struggle, but will get though it and hopefully be on the home straight soon enough.

My team have been brilliant as have all the staff and could not have asked for more support and encouragement from them. Have so much admiration and respct for them all.

But will keep posting as the words of ecourangement are helpful to get over this next little hurdle

kind regards

Ian

Hi Ian how is week one at homemade going ? I met my oncologist yesterday he is very pleased with my progress and let ctbscan first week in January results 14=January,then he says every 6 month for a chat 

if yiu need anything just post n will get back to you

hazel

Hi Hazel and thanks for asking,

not too bad but not fablous either. At least I am off 3 weeks leave and getting plenty of sleep,

I'm just realy stuggling with the Ensure drinks as find them gross and Im really going to have to try and start on chicken soup/rice/custard etc and experiment little with food as not sure how long I can bear these damn drinks !!

Neck seemed to start right after treatment stopped and little red/burnt and little raw and itchy.
So far skin not broken but quite sensitive.
Ive got aquaous cream stuff in fridge and that cools it down.

Sorry sounding sorry for myself while Im still staying positive, just keep waiting for some signs of normality lol.

Thats fab news about you progress and long may that continue.

kind regards

Ian

hi Ian see you were up at the witching hour 0400 !

totaly sympathise with you and the ensurevdrinks get complan n thin them down they are more palatable or even just plain water pa I used mineral as opposed to tap. 

These next few weeks are the worst hence whyi had feedingbtube custard rice pudding just woukdnt  getbdowm so u are doing well . It’s ok to feel sorry for your self but to cheer u up last night I had a weak orange squash normally wouldn’t touch  ut but ut was bliss unwill find yourself justbwantung something to drink. 

Tea n coffe unlesss de caff dry u out try de caff green tea or peppermint .

thank u for your comments nextbaim is yontry cereal just trying some niw but not brill it’s strange hiw pastry goes down 

my neck if you’ve seen my blog got 3 rd degree burns so when skin healed I bought bio oil from boots it is very good my neck now u can’t even see where the burns were

take care keep in touch

hazel

Hazel,

Thanks for your words of encourangement and means a lot, especially when you undertand as you have been through.

Ok so I have a plan as off just now lol...I get up 3.00am ish and take 1 oral morph and some water.

I then have 3 of these esure drinks between 3.am and 5.00 am ish as it gets 3 out of the road then one around lunch then another arounf tea. I then take a custard or something as I can manage 5 at most and thats it. Been watching weight and creeping up few pounds each day so thats encouraging and hope continues.
I then back to bed and up again around 10.00am for meds and focus on another exiting day lol.

Seen you neck and ouch!....mine is nowhere near that and just sensitive and I put on vream from fridge..its the damn itch thats annoying but where cream comes in handy.

Being positive, i Just put it down to part of the journey and I will soon be on the mend like yourself, albeit slowely monkey

regards

Ian

Hazel,

Still bothered quite a bit with mucas, esecially during night and still up a lot and hence throat still quite sore each morning until I take oramorph n some water to settle.

Were you bothered still as much at this stage and roughly when did you see an improvement?

Use nebuliser once a day so maybe should up that a bit?

regards

Ian

Ian

the mucus does go, but it takes time.

i used a portable nebuliser machine which the hospital gave me and I used it first thing in the morning and last thing at night. It does help so you might want to increase your current session.

you are on the road to recovery but it will be slow. It’s 6 weeks of intense treatment and 18 months + of recovery to find the NEW YOU.

you will get there, just be patient.

let us know how you get on.

Vatch

Ian

the mucus does go, but it takes time.

i used a portable nebuliser machine which the hospital gave me and I used it first thing in the morning and last thing at night. It does help so you might want to increase your current session.

you are on the road to recovery but it will be slow. It’s 6 weeks of intense treatment and 18 months + of recovery to find the NEW YOU.

you will get there, just be patient.

let us know how you get on.

Vatch