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

Ask him next time you go.would younbelieve I only had a camera up on the 2 nd lovalmloval Ent clinic  Oncologist hasn’t done one he believes in science from the scans , in my case with it being tonsil said the camera wouldn’t tell him anything somwhy put me through it. 

Tell yiu one thing it’s a very very strange feeling today m John and I just been talking and we are both the same elated that the cancer has gone but there’s a deflated feeling as well hard to put into words maybe becasue we’ve lived ut day and night since 14 May last year and now it’s gone !!!

Hazel 

I think the whole process is a strange experience Hazel, Iv gone from being fighting fit for my age riding bikes, walking, playing football to being hit by a juggernaut, even now months on I can’t accept it fully but I’m in a process of getting me back to normal and doing everything I can to get back to where I was, never thought it would happen to me.

Dave

Ditto if you’ve read my blog we cycled 1100 km lastvMay ok had what turned out to be s lymoh nide with cancer cells in it but I don’t drink don’t smoke n for 61 female fairly fit n get tonsil csncerbfrom h p v 16+ virus. Why us when there’s scores out there that abuse their bodies.  Only saving grace the cure rate is good. Like my oncologist said on first meeting him it’s the cancer he would choose if he had to get one. But the treatment is probably the worst of all as until u can’t use your mouth u have no idea how much it and the tongue do. 

Hope u get a good night anyvwuestions justcsdk. Just because I’ve got my results I am still going to help as many as I can for a long time to come . Off to Spain Saturday 19 days gentle bike riding no mountains though all flat 

hazel 

We are 2 1/2 years into remission and athough that sounds a long time the experience changes you forever. It’s something you can’t explain to those who haven’t been through it. The doctors say go live your life but that’s easier said than done especially when the cancer diagnosis creeps up on you with no major symptoms.

There are so many unanswered questions- why did I get it , why did I survive , will it come back ? How will I know ? As time goes by although cancer may not be the first thing you think about when you wake or the last thing before you sleep it is still there everyday.

I do think theres a whole piece of work regarding survivorship that needs doing particularly the psychological impact and how you move forward.

Until then those who are lucky enough to get the ‘cancer free’ meeting muddle along living their lives to the fullest and managing the longbterm side effects.

How you guys get on with machine maintenence/breakdowns? We got told Fri no treatment Mon, machine wroks. Drove up today, waited 2 hours past my time they kept saying maybe 20 mins, then we all got cancelled!  They are calling tomorrow to advise if off still. It sounds unusual and maybe, dangerous to our outcomes?

I got moved a few times to other machines to keep things moving but never had a breakdown in 6 weeks.

Yes, think our newest machine is a one off here.

Hi Dave Ian Tfs 

bit if interesting reading that’s I’ve come across if u google After the treatment has finished-then what. By dr Peter Harvey Leeds hospital trust. It’s an excellent article on recovery. Hope everyone is ok ?

hazel

Thanks Hazel. x

thanks for sharing that Hazel, Excellent article as you say and can relate to that.

ian x

thanks for sharing that Hazel, Excellent article as you say and can relate to that.

ian x

Ian, you back to work, doing ok ?

Good article that very true, I’m only 5 days post treatment so no real changes for me apart from a slight saliva improvement, the tiredness has really kicked in now I’m sleeping well at night plus the daytime naps. We’ve done a few long walks which has been good and not missing the daily trip for treatment one bit :)

Dave

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