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 Lyn

sorry your hubby has joined this exclusive little club but welcome and you’ve come to right place don’t worry easy to say nit to do. The n h s do have protocol to follow Ifrom diagnosis they should start treatment within 63 days I was exactlyb63 days looks like your trust ar e over running . My  oncologist says weeks don’t make that much difference as ince treatment starts ut is aggressive but like yiu say they do aim for cure .also look at ut this way if they were major concerned they would have him started sooner rather than the allocated waiting time  hopefully.

i am 12 weeks since my last radiotherapy session and from diagnosis day well even before I have kept a blog itbgoes into detail .

www.radioactiveraz.wordpress.com also a guy called Gary who is nearly 4 years into remission has one which helped me as well

www.gammaraygary.wordpress.com

i go into detail about the mask it literally takes 15 mins and tell your hubby don’t worry it’s painless . Let me know if yiu look at the blog please plus any thing else you want to know we are here for each other .looking back it’s tough treatment but a positive attitude is the biggest thing you can have along with a supportive family .re the chest x Ray it is normal I had chest x Ray plus pet scan they are checking thatbnothing has spread .

Regards and take care

Hazel

Hi Lyn

As Hazel says welcome to our small but supportive group of both patients and their carers. My husband was diagnosed with tonsil cancer and lymph node metastasis in December 2015 - in fact on the 8th its burnt into my brain and he started active treament on the 8 th Feb 2016 so exactly 2 months later. The Oncology team need all of the scans etc to be anle to make a decision re what treatment is appropriate. There are then other preperations such as a dental review - do any teeth need to be removed- will he need a PEG feeding tube prior to starting- will he need a PICC line for chemo delivery - so it does take time. Maybe contact the Oncologist secretary and ask to speak to the Oncologist and vooce your concerns or do you have a specialist Macmillan nurse you can talk to.

Good luck and ask any questions you might have and we’ll try to help.

good luck and best wishes

xxxxx

Hi Lynn,

Am sorry to hear of your husbands diagnosis and understand the anxiety.

I started having symtpms in Jan and to cut long story short and in bewteen wrong diagnosis/meds and treatment it took me until August until properly diagnosed and again told curable. Was told not to worry as I raised the same concerns over treatment wait, but had to get teeth removal first,recovery period then mask fitted, then appointments sorted.

I literally just finished my 6 weeks radiotherpy this morning and although its seems a long time, I was told the extra fews weeks/months would not really make any difference to treatment plan.

I do understand though , that you both want to get treatment started and hopefull you can get your dates as early as possible after xmas in a few weeks time

i wish you both well.

kind regards

ian

Hi all

Well finally finsihed my 6 week treatment this morning and strange feeling as mask came off for last time (no i didnt leep it) and although some kind of relief this part finished, aware still have some recovery period to go.

Met with advanced nurse practinioner afterwards and just a little concern I have not been eating and drinking enough this past week/10 days and lost around 9/10 pounds ( which normally I can afford to), but a lot to lose in short period.

So basically have been prescribed 6 ensure drinks a day for 2 weeks before weel being clinic follow up meetingin cpl weeks amd have to try and make sure that I take these drinks along with 4 litres water a day.

That plus all my medications lol

So for some reason I feel a little flat and thought I would be more upbeat as mask came off, but little blip, i feel, re weight loss and having to have 6 ensure drinks a day plus 4 litres water.

But on the bright side, its part of recovery and told its all necessary to help recovery quicker so I will do as im told and heed the advice given and knuckle down and just look upon as additional medication to be taken for only a little 2 weeks and hope some appetite comes back soon afterwards.

At least I have taken 3 weeks annual leave from work next week, so plenty of rest and chilling doing not a lot.

if its ok, I will keep posting as I go as although my initial thraed was to outline my 6 weeks treatment, its not really ended today so will keep on posting in the same hope that it helps at least one person

kind regards

Ian

Hi Ian 

wecome to the Ensure club I am getting 50% of my calories still this way 12 weeks after RadioactiveRaz finished. 

Little tip if you are struggling with getting them down then down with complan you get from any supermarket plus mix with water then mic the Ensure I Tom it yiubare winningb2 ways inreaseingvthe liquid un take and calories in one fell swoop .took me a few weeks to work it out what to do but once I did the weight loss stopped. I lost 18 lb in last week and first few weeks after 

If you can take any comfort I am typing this while eating a warm pork pie with Baxter’s consommé as dipping liquid  Baxter’s soups are good I usually make my own but couldn’t stomach any home made ones for ages  

Congratulations on finishing Radiotherapy your flat feeling is totally normal you won’t consciously realise but it’s loosing day to day contact with medical people .

pleas keep in touch we are here to help each other’s plus like u say if we help one other person it’s job well done  my blog has over 1500vies as far as USA to New Zealand. Don’t struggle along message or contact your nurse we are all here to help each other get through this  I see my oncologist on Monday lunchtime hoping for pet scan date .

on another’s note rung  bu p a travel insurance yesterday they will insure me nit against the tonsil cancer but a yearly policy for me n hubby £245 with max stay 90 days so we’d were well pleased as other quotes to include tonsil cancer were over £2000! Let some face it isn’t coming back n am sensible enough to jump a flight home if need be will only be in Spain 2.5 hours away.

anither plus I slept 7.5 hours without getting up had two sip sleep if water at 0200/0400 then tablets at 0700 n went back for another 2 hours 

try and enjoy the weekend sleep nibble sleep drink take it easy hare n tortoise n we are tortoises 

take care

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 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

Hi Ian I used nebulisers at least 4  times a day  times it round tablets time so it became routine around your stage I wasn’t probly using a box of tissues Tesco 90p are the best nit harsh  strange how we become connoisseur of things !. Unfortunately the mucus can stay around for a long while ive still got some 13 weeks in .what I did was sometime used plain water in nebuliser as saline was drying my throat out .the spat out into tissues constantkybthats for me the worse part i being a women cannitbdo a deep as my hubbybsays grolly n spit ut out. , cancer ribs us if any dignity by the way ! I have spat out in public nit pleasant at all.

the stages are mucus runny then all of a sudden wallpaper paste isn’t the best described word I’ve seen .so gargle gargle with warm salt water n if u can stand ut soda water after to try and break it up.

sorrybthe news isn’t better , but I have learnt we are making mucus for several reasons and kne isn’t to,protect the throat by putting a lining on it the heal the radiation damage even knowing that doesn’t help as I find it debilitating. Just sat now trying to force cereal down .Hiws the Ensure doing are u diluting them ?

try and enjoy the weekend watch tv read a book if u can

Hazel x

Vatch & Hazel,

Thank you and good advice. I will up the nebuliser and Hazle, I never even knew or thought to use water as I agree the saline does seem quite dry when using.

Probably just off day as slept during night more than normal and musas seems to be lying in throat n not all coming up. sorry to be descriptive lol.

As  for Ensure, well so far I take 3 in reasonably quick succession when I get up to get them out road then one lunchtime/middle afternoon and one tea time ish. Dont care but max I am doing is 5 !

Not thiined out yet as mentally only a small bottle so just sook through straw until done so will see how long i last doing this.

I hope once over I can get fish suppers or fillet steak on prescription as well.

So it is what it is and appreciate might be a slow recovery to get back to the "new me" as you put it vatch.

And jelous hazel but will get there soon as so love my cornflakes in the mornings.
Its fab being able to come on and bounce thoughts and get get tips and one I aprreciate

kind regards

ian

So I did say I would post each week on my treatment journey, good and bad, and its now a full week since my last treatment last Friday.

So fact treatment has stopped has not really stopped any of the side effects, as I was told, and I am still brining up quite a bit of mucas during night and still on the Ensure drinks for nurtition and same amount of medication.

Still as tired and sleep pattern still same although couple days stayed up all day and lasted until 10.00pm

Neck is little sensitive and red and i would say a little more noticable this week and I am often putting on aquaous cream direct from fridge to calm n cool. This definately helps.

Not all doom and gloom and just see it as part of process and you just have to get on with it and see it through as no option. You hear of side effects and occational blips but most time am quite happily on utube/gadgets/entertainig myself/retail therpy and thats still ok.

So quick summary of week 7 and 1st week post treatment is pretty much same symptoms and side effects and wil see what next week brings.

Take care you all and have a good weekend

Kind regards

Ian

Hi Ian

good week one has gine bybrelatuvely ok.Tip for neck I used bio oil it’s also soothing Ann’s heals itbvery well mine got 3rd degree burns in ut answer niw you can’t reallybtell where u was zapped.!

pleased to hear retail therapy helping lol !dont rush to get off the medication I am still on co codomol 8 tablets a day and last week stopped the ibuprofen and have got The oramorph down to 3 times 1.5 ml and night time 3 ml so 7.5 ml in total like my consultant says they are painkillers no prizes for being in pain .intried several weeks agingoingbcold turkey deffo nit to be recommended .

keep drinking the Ensure I found the chocolate ones disgusting u may find what u could tolerate lastbweek u can’t this week.

i am wwwk 14 and this morning for first time have a little muchos nit loads but wont get too excited as kniw it couldn’t come back. If it’s been othering you try asking dr for carbustatin it dries the mucus up but also can dry the throat sometime a no win situation. 

Hang jn there 

yell if u need anything

Hazel

Hi Ian sorry for late reply couldn’t sign on site iver weekend properly. Fish supper n fillet steak if y do I Ann coming up. Goingbtinteynfish n chipsmon fridaynfrom chippy! I am one if lucky ones know Vatch couldn’t do chips for a very long time I can do home made ones .thinknthe fillet steak is a long way off meat is deddomthe hardest. I am fast becoming pie girl !! Previously never touched them now pork pie steak pie chicken pie cheese pasty doesn’t matter what pasty either . But tried a tiny piece of mince in a lasagna no way was that going down my throat so strange.

tipmdor the Ensure I poured it into a glass and found no it much easier than the straw took me weeks to find that out though so try it .

off to my dentist this am clean and polish I hope as long as she isn’t gentle 

happybretail yherapy

Hazel