Hi Laura,

Good luck to Mick and keep us posted on his journey.

Wish him all the best and hope side effects kept to a minimum but all rooting for him.

Dave

well done completing treatment and will keep positive for you on recovery

Same wishes to all on this journey, no matter the stage you are at. 

kind regards

ian

Hi Ian

well,allmthose sleep deprive day nights have paid off just been given the All clear it’s such a surreal feeling hope I can be of inspiration to others .see oncologist in 12 months in meantime lovalmENT every 3 months

hope you are doing ok ,

Hazel

Hope article helps it’s so true. Walking is good it really helps the radiation tiredness. Just remember keep drinking hope you don’t get all the *** after effects. How’s the eating ? 

I can’t swallow food so back on soft foods and Oramorph, porridge, soup, yogurt, I’m drinking warm water just for a change but I need to drink more Hazel, any tips on getting more inside me?

MHave you been prescribed any high calorie food drinks like Ensure or fresubin? From your Macmillan nurse or dr .yiu really need them as they are highly balanced to make up all the nutrients we are missing. They are a bit gloopy so what we did was dilute then with bottled water I still can’t drink tap water!  If you dilute them you get a double hit 300 calories instantly but 600 mil if liquid. 

Soda water was my main source is drink have you tried herbal tea ie had peppermint only luke warm though and de caff green tea .youbreally need the liquid as it helps to get rid if the radiation are you keeping a record  get Julie to keep a  record if Hiw much you are  drinking need a min if 1.5 litres 2 is better plus at least 1900 calories sorry to bearer of bad news. But the 3 things that get us through ut are food drink sleep and lightbexercise .

keep,in touch

Hazel 

Yes Iv got the high calorie drinks too I forgot to mention them, I can’t stand the taste but get them down by pegging my nose.

hi dave

so dilute them  with water it makes them more palatable which ones do yiu have ? I used to have 4 Ensure and 1 fresubin a day hated them like u say but diluted they are a bit more palatable it’s really a case of calories calories in a week or so try a boiled egg with wait for it toast lathered with lurpack I still find roast easier than bread although today I had a cheese sandwich on whole meal bread sorry. 

Anither food to try toasted fruit tea cake with cheese on then grilled like cheese on toast cut into quarters seems silly but well greased toast I and everyone who I’ve rold it aboutbsays wow likewise I was skeptic as toast is harsh but give it a try 

h

The drinks are Fortisip I have three a day, another thing I forgot to mention is Julie makes a huge smoothie with fruit, high fat milk, yogurt, honey etc 

Well done on smoothies i couldn’t touch them  for weeks the fruit just dried my mouth out. See if dr will prescribe Ensure they are creamier than the fortisips or try complan made with milk that’s anither good one to try most supermarkets sell it in sachets also I’d undontbwant to bother dr try meritene from chemists as a powder to make up .its slowly coming back to me I am 20 weeks since finish which is scary  . No one tells you how long recovery is likely to be ok we are all doing it at different paces ,i a must now onky on paracetamol but sleeping isn’t good along with dry mouth at night during day am fine. Off to bed now so try the abive u might find them better than fortisip n if u get on with them getbdr Tom prescribe them 

night Haze

Hazel

Back to work next week..baby steps...2 days working at home ..1 day on office and 2 days annual leave to break in...mixed feelings as im still so tired but ill give it a go.

Update this blog tomorrow as end of week.

Dave

on the drinks like ensure....i am still taking them but can only tolerate the banana or strawberry ones..the chocolate or vanilla gave me the boak( nor that any are great) so maybe trial and error as to what you can take without discomfort. Smoothies sound good but do they tatste proper?

I tried ice cream wee while ago and coudlt.

Drink wise, maybe im lucky as I got used to drinking water from the get go and litres of it. It makes a difference if its cold tho and always need cold from fridge. Kind forced at start but came easy and still drink so much as mouth still claggy and it does help.

I was told by advanced nurse practioner that water was the best medicine I could take and would make a differnce post treatment if I did from start. Was told to drink then drink then drink some more.

Best advice I have been given thoughout my journey, but we are all different

ian

Thanks Ian I’ve taken the water advice onboard and i’ll up my game, looking at my urine it’s a good straw colour but like you say you can’t drink too much. 

Iv got a lot of the Fortisip drinks so I better use them up as I can’t abide waste, the Smoothie that Juile made me yesterday was the nicest thing Iv had in a month it had mandarins mango pineapple Greek yogurt, high fat milk, honey, and complan. I slept well again Iv only been awake 20 mins and 9.20.

Dave

Well done on sleep lol nearly a week into recovery slowly slowly, for once dirhetbthe waste yiunwill Ben able to use them later in the process the ithervare more palatable take it from me n Ian although we call the bush tucker trial drinks ,likewise I couldn’t do coffe chocolate or toffe. Vanilla banana strawberry were ok 

re sleep I woke sry mouth even though I am using the xymelts again 0200 0300 0530630 up atb0830 answer I am a solid 8 hour a day girl hey ho

ps have yiubseen wherevthe fergie is turning up at Carringtonnfor training !!!!

hazel

Well done on sleep lol nearly a week into recovery slowly slowly, for once dirhetbthe waste yiunwill Ben able to use them later in the process the ithervare more palatable take it from me n Ian although we call the bush tucker trial drinks ,likewise I couldn’t do coffe chocolate or toffe. Vanilla banana strawberry were ok 

re sleep I woke sry mouth even though I am using the xymelts again 0200 0300 0530630 up atb0830 answer I am a solid 8 hour a day girl hey ho

ps have yiubseen wherevthe fergie is turning up at Carringtonnfor training !!!!

hazel

I know someone who works at Old Trafford Hazel, It was Fergie who got Ole back along with a getting Mike Phelan back despite having a job he loves coaching in Australia, Fergie is pulling the strings again in more ways than you could imagine.

Dave

I hope he gets the job permanent..Ticking all the right boxes and doing great and team a pleasure to watch again.

Really nice humble man but dereves on merit. Would imagine lot man utd fans not happy if they let him go in June. As you say Dave, probably will be decided by Fergie.

ian

Hi Dave interesting it makes perfect sense as well fingers x for Ole Oke  getting it permanent like Ian says. 

Anyway must start packing  !!! Sorry guys. Lol

x

So at the end of week 8 , post therapy.

Mixed week and still soooo tired and sleeping so much. cant seem to shake this fatique at all although not really napping during day but earlier to bed and sleeping 10-12 hrs.

Start of week was just no energy at alll and I guess mostly my fault.
Eating was getting better but appitite gone again and was not really taking in the fule I probably needed and why my fault and foolish. Its hard sometimes and wish it was just as easy as some people saying you have to eat, but you do am Im proof of what happens when you dont. Upped my bush tucker Ensures again the past couple days and has made me feel a little better.

Med wise, Im still on morphine but not so much and still regularlity taking caphasol and diffkam for claggy mouth.

Good example of thining you are doing great and the start of a great recovery when you get a knock on the door from your body saying err nah.we have a bit to go yet.

Not sure if a little early but next week plan to work 4 hrs a day mon/tues..4 hrs in the offfice wed then 2 days annual leave and will see how i get on. Mixed feelings as been off for so long and still right up there with fatigue but going to give it a go. May help fatiguw and mojo getting brain into gear , well what im hoping for.

So overall pretty much same apart from reality that I shoudnt be over confident on recovery process and one or 2 weeks feeling great ish does not mean that I have cracked recovery period and its still slowely slowely monkey. 
Will continue doing as im doing and still drinking lires and lires water. Have consultant again on a couple weeks and I think PEP scan may be due end of Feb but will find out more as I go.

So plan is to get some more ensures in plus more food which in turn should help with energy and fatigue. Only my own fault and I do know better, but I was a little remiss re intake and paid the price.

Learn to take own advice is something that springs to mind !

Hope all are doing ok and hope you have the most fabulous holiday Hazel and well deserved;

kind regards

Ian

Hi Ian

Thank you will ,do  will keep you updated. 

Week 8;was when we went to Spain I tried to explain to John how fearful I was if leaving the bubble I had created around me but sheer grit determination and a modicum if grief from John like ie grow up woman !!  Hey you haven’t had what I’ve had conversations! But if it’s any help it was a turning point for me ok slowly slowly monkey .But try work justbthunk if yiu can lie in a table being radiated with a mask on a 4 hour sojourn to the office is do able lTake your Ensure bush tuckers with you and dilute if need be,

 Re sleep swop you am now off  the medication yeah !!! Paracetamol only but took me 7 weeks again slowly slowly reducing oramorph 1 mil at time a swopping a 30 mg co codomol for a 8 mg every 3 days . That’s your next aim in a few weeks time.now i I sleep in 2 hour stretches wake up dry mouth sip water back to sleep at least i a more nit out if bed. .

somgood luck for the coming week and eat eatbeat. Try boiled egg soft and dripping in lurpack soldier tiasrs pretend u are 5 year old again.

will think of  you Monday whilst in my bike in 17;degrees sorry !!!! Have u had a little walk yet?

nagging Hazel lol

I can sympathise Ian having to eat when you have zero appetite is difficult, my stomach must have shrunk too because I’m stuffed after a tin of soup these days, the other thing is how my taste has changed, a weak cup of tea tastes strong to me now and things taste different to how I remember them.

Ian what treatment did you have initially?

Dave

Hi Dave

I had no chemo but 30 daily sessions of radiotherapy over 6 weeks.

I get you as well re feeling stuffed over a tin of soup. Its funny feeling as normally would manage adult portions but sometimes just cannot do. Not you dont want to its jus that you cant.
I'll be upping the Ensures as in a funny way ive gotten used to the Banana or Strawberry and as I know they are fuel im reasonably ok with. The other thing with the food is not just the eating of but the lack of appetite and I also cant be bothered making anything, although partner makes what I want at dinner.
Also Dave, if you are like me, your taste buds do change and things do taste different to what you would normally expect. Not sure how long lasts for and I think , like everything, depends on the person as we are all different. Sounds like you may have some taste bud challenges as well and I think your timing was around about the same as mine re noticing. There was a period when taste totally shot and all I could take was these Ensure drinks

So we are in a little battle trying to get as much fuel as we possibly can into our bodies. while we have no appetite and also having to come to terms with things not tatsing way you would normally expect.

Oh the joys...I have lost quite bit weight in the process and I never had to go down the route of getting a tube fitted, and will just have to make more of an effort of taking more fuel and accepting its part of the medicine and recovery process required..

Hope im not coming across as negative, is just been a little struggle and the only thing I would say hanging around big time is fatigue, but will up the ante over the next few days and next week over eating. Taste buds getting slightly better, but no real appitte to use them
Teasing out the morphine and trying to reduce slowely as that will add to the tiredness.

My big apologies for being a moaning old git this week lol

Hazel

Walks...only around supermarkets at moment but at least something, but its not much i agree and not often.Will let you know next week how I get on re work and hopefully will be more upbeat and full of energy

ian

You are entitled to a little moan Ian dont worry as Hazel has said we didnt ask for this,  sometimes Im a right moaning git, you`ve had exactly the same treatment as me 6 weeks radio and no chemo.

Im 1 week post treatment today and its flown by just as the 6 weeks did, Iv just tried egg on toast with Paracetamol to numb my throat, it was a partial success I ate half the toast and all of the fried egg but I had to force it down as Im not hungry at all but the gaffer Julie is doing her job and trying to get me to eat something.

Looking into my throat its still ulcerated at the back and so is the roof of my mouth and the gums on the right are swollen, the skin on my neck is sore generally and bad on just one small area about the size of a ten pence piece, a long way to go yet Ian keep moaning you`ve earned it.

Dave

Ian

sending positive hugs and thoughts your way.remember  I am week 20 and it’s still baby steps ,so yiu are doing great and I still have an Ensure every day ,it’s a guaranteed 300 calories and to be honest like you say they aren’t too bad !OMG never thought I would say that lol.

suoermaket is a start !!!  Try a pie u may  only eat then inside but give it a try I used to warm a slice of pork pie as well ,I am still finding that processed meats go down better ok it’s nit fuel if choice but anything is better than nothing ! Try a Greggs cheese and onion pasty as well yiu May be surprised ok wash  it down with water .but it’s better than nothing dip in soup as well ok lukewarm not hot x

UHi Dave well done on fried egg and a bit of toast is better than nond Agree ou r stomachs have shrunk  I struggled last night with tea just couldn’t face it. No matter how we try we will have good days and bad days .At least winter hopefully will soon be over mam looking forward to seeing a bit of sun tomorrow even if u can’t sit in it !!! WIll still be checking site so keep in touch and fingers x for another win tomorrow.  Ole ole ole .

on a anither good point Neil who was the last  in our radiotherapy gang got  the ALL CLEAR As well yesterday so Dr Sen must be over the moon 4/4 in a week !!!Peoof that although brutal thentreatment works.

re your ulcers have you git gelclair prescribed ? it’s good and it does work it’s expensive £69 to buy but I had a burn full length of my tongue took until about 5 weeks ago for it to go. See your nurse or dr 

 Ranting  is good for the soul and being a mangie one is perfectly acceptable!

Hazsl