Hello Hazel, sorry for the delay in responding, I sort of posted it and then let it do it's own thing whilst I recover some more. So I am now 11 weeks out of radiotherapy and I never really appreciated how hard it would be, I've been sort of forcing myself into my old normality with not much success, so back to the drawing board and focus on myself and resting a little bit more.  I can't get my head around feeling ok for a day or two, or three, then I suddenly going backwards, but I suppose I still can't really get my head round any of it! 

Anyway, interesting to know that you were diagnosed around the same time as me and glad to know that you are doing well. Has your eating improved any since your last comment? I have been wating more and introducing harder/lumpier foods, small bits and lots of chewing and lots of water, I've lost quite a bit of weight and I was slready very slim, so I'm on a mission to gain weight. I still have pain in my tonsil area and everything I eat or drink touches it and makes it uncomfortable, but bearable.  I can eat wotsits with plenty of water, but without water it's a very sticky, orange situation, haha.  Things are looking up and I can almost see the light.  I wonder if that pain near my tonsil will ever go away! I bloody hope so.

Take care x

Hello J4,

I never had a major problem with taste, although I do find that I can taste things better after a salty mouthwash.  You have hopefully found something that works for your husband in the time it has taken me to respond.  Well I hope so anyway.

How lucky he isn't suffering with too much pain, Ibhope that is still the case.  I am 11 weeks out of radiotherapy now and still have pain, but it is very slowly getting better.

Take care x

Hi Emma, thank you for your reply, and for the encouraging words.  Was your husbands cancer HPV negative? Pleased to hear he is doing well, although sorry to hear of the later effects.  Just when you get rid of something, another thing rears it's ugly head.  It sounds like it is all under control though.  I love sweeties too and now they just don't taste the same, I'm ok with chocolate, but end up in a bit of a sticky mess, need plenty of water or luke warm tea to wash it down.  I'm still in a bit of pain, 11 weeks after my radiotherapy, but I am managing to eat so much more than I was, it's just a very slow process and I'm not the most patient person in the world.  Things are looking up though, thankfully.

Take care x

Hi lady Di. Eating wise an pretty  much ok crisps nuts deffo no no. Meat wise if cheap cuts n stews pies ok a nice juicy steak occasionally but otherwise chicken a no jo even with  gravy. Just plenty of fish and veg have put apps 4 lb back on but have  lost  muscle mass especially in my arms have bingo flaps not wings . Have found can have bad days if u don’t have a good food intake so trying really  hard. I can eat chocolate in moderation then it drys mouth out. Saliva is an ongoing issue I gave periods where I think wow it’s back followed by days if dryness like I say it’s the cancer that keeps on giving. We are in Spain at the moment leaving on Saturday have biked over 600 km and walked 300 been here 9 weeks.  Keep in touch hazel will be updating my blog in next 2 weeks or so 

Hi bsck in the U.K. had ENT appointment today camera up nose and down throat all looking good no sign of any reoccurrence do sll good. 

Mall u can do is keep trying different foods today I managed acstick if celery. Wow most people would think I am mad but unless u are in our position it’s the little things that give us all s lift 

hope all ok h x 

Hi Hazel,

Sorry for the delay in responding, I missed your reply.  Brilliant news, long may that continue

I am still sore at the moment and adjusting/moving my medication around to try and make it a bit better.  I have my first scan next tuesday, so hoping all goes well.  I've had a few appointments at the ENT unit and they are happy with my healing so far, still quite swollen but nothing terrible going on, so fingers crossed it's all up from here.

Haha, I am not keen on celery at all, but well done you and as long as you enjoyed it that's all that matters.

Do you still have pain eating or is it a lack of saliva causing your issues? 

I have been eating really well despite the pain, my pain is all one sided thankfully, so it is manageable, I've managed to put on a pound, so hopefully get back all those pounds I lost before the end of this year.  I lost 18lbs in total.

Take care x

Hi lady Di. No pain when eating it is the lack of saliva ,don’t get me wrong I have saliva I know some people have very little mine is in the thick side.With water I can eat most things apart from Overly spied food very mild curry but  anything stronger than a mild korma nope, bread still an issue wraps are fine and I can eat well buttered toast all day long .Watching game of thrones 90 min sounds long I ate a packet of plain multi pack walkers crisps !!!! Achievement ok normal people 5 mins and they are gone but was well pleased didn’t use water either .Weight wise ive put 3 lb on in last 3 month but some weeks loose a lb ,anither thing I find hard is lettuce it just won’t slide down but at least I can now eat tomatoes.When I look back to last May ans I didn’t know what I was facing I’ve been through a lot and touch wood come out the other side. People ask has it changed me I reply nope I am still me I don’t dwell in the fact why me it happened dealt with it nive in. I am one if the lucky one still seems I dont get stressed about ent appointments just chill out go get it over with and forget about it until next time.

Keep in touch Hazel x 

That's great you feel no pain, I feel like my pain gets a little better, but I keep getting oral thrush and the pain builds up really quickly before I get the chance to get more medication. It's torture. How long have you been pain free? I am 14 weeks out of treatment and still sore, I know everyone is different, but I had hoped to feel better at this point.

I really struggle with anything lightly spiced, and I loooove spicy food, so hope that improves, lol. I'm good with lettuce, not tomatoes, I find them really sharp, like acidic. My saliva is not bad, quite thick in the morning, but not too bad and don't wake or need water in the night. Hoping that can improve even more, for you and me. Well done on the crisps, and with no water, wow!! I haven't braved any crisps apart from wotsits, I'm scared the sharp bits will hurt.

How do you feel about gaining weight? Are you a healthy weight and don't need to gain or do you need to gain? I've been using a calorie counter app on my phone to encourage me to eat a certain amount of calories with the aim of gaining 1lb per week. I've only been using it for 3 weeks, the first two weeks I gained nothing and last week 1lb, so fingers crossed when I weigh myself on monday I will have gained another lb.

Brilliant attitude to have and I'm much the same, you'd waste your life away constantly fretting about it, you've got to live life for the moment and thank god that we are able, there are so many people worse off, with worse outcomes, treatments etc. 

Speak soon x

Hi 

ibstarted weaning my self of the cocktsilmof drugs lol oramorph and co codomol mid December took me 5 weeks so I would say well 18.  I did ut very gradually a tablets at a time ie replaced a 30 mg co codomol with a 15 then when all were 15 reduced to 8 mg then to paracetamol ditto with oramorph reduced mil a dose. That way no side effects . No if I’ve been talking too long who me never lol my tongue aches so have a paracetamol that’s all.

ssleep wise I niw get approx 8 hours just wake for water but feel that’s getting better every  day  

Weight wise I was always 9 st 7 then for no apparent reason *** uo to 10 st 7 couldn’t shift ut even though I was walking cycling eating healthy. Then when I got diagnosed I purposely put anither 11 lb on as I knew the weight would go lost 2 stone answers now vary between 9.10-9 11 so am ok with that. I know some weeks I don’t eat ask well as i should some days uts still hard to get enough calories in ofvthew healthy type veg I am fine with and eggs but fish cod ok salmon ok haddock no  prawns iffy some days. 

Chocloate nit a problem !!!!!!

but positive mental attitude is what keeps me going thatband getting in my bike .off to  wet Wales well that’s what the forecast says in the morning for a weeks outdoor activities with rest if famiky they won’t let me moan anyways 

keep in touch ask anything yiu wantbtimknkw when is you’re pet  ct scan ?

hazel x