Hi

I just wanted to thank everyone involved in this thread, as reading it has been incredibly helpful over the last few weeks.

My husband had a swelling on his neck diagnosed as cancerous at the start of this month (April 2019).  It was a shock: he's never smoked, rarely drinks, cycles regularly, eats sensibly and is in good health - or so we believed.  Since then he's undergone a CT scan and biopsy which have confirmed the tumour as being at the base of his tongue and HPV16+.  He hasn't had his tonsils removed, as the sugeon doing the biopsy/panendoscopy thought they looked OK, but going by the scan the consultant thinks one has been affected, as well as some lymph nodes.  He gets assessed by the dental team tomorrow and has an MRI booked for the end of this month, plus whatever other appointments are yet to be arranged, with chemoradiotherapy due to start in about 4 weeks.

The last couple of weeks have been stressful (to say the least!), but this - and a couple of other similar threads - have been incredibly useful, as have the wonderful blogs by Ian and Hazel.  Having an insight into the treatments and their side effects meant that we felt quite well informed about what lies ahead even before speaking to the hospital consultants, and instead of everything being a blur, we were able to take in what was said and manage to ask some sensible questions.  Without all of you generously sharing your experiences it would have been a very different story.

Because of that, I wanted to let people know how important this thread has been for us - and that all your tips for coping with the treatment etc have been gratefully noted!  It's not a good situation to find ourselves in, but we feel pretty positive that we'll come out the other side in one piece.

I hope everyone who has posted, or who might be reading this, is doing well and continues to do so. 

Thanks again, and best wishes to you all

Have to echo this, prepared me so well, a Godsend.

Evening all .

I hope you have all had a wonderful  Easter . Some advice please on creams please . I can see blisters coming on Chris neck area it was day 16/33 today so I know this is going to get worse . Have been applying the Diprobase  given by the hospital religiously nice and cold from the fridge  several times a day ! Did any of you find anything that helped more than the emollient type creams . Or basically any advice for radiotherapy burn . !

Many thanks Ginny x x x

Hi gino

i was advised by my Radiotherapy team oncologist and nursss nit to use any other creams onkybthe ones prescribed by them , if you start using over the counter creams I was told it could cause more problems .its not easy  I had a 3 rd degree burn by week 5 but was given the correct bandage to use and it had to be kept in all day n night onky taken off for treatment. If you put creams on then radiotherapybtakes place it will onky burn all the more so my advise is see your nurse they are the ones who can give you best advise. Look at my blog and you will see the burns plus then see later how I recovered  

At my last session oncologist told me he knew on day one I would burn but didn’t tell me as like he said there was nothing we could do to stop it my enlarged lymph node was very close to surface of my skin so not choice. Likewise I had a burn the entire length of my tongue again caused by the margin so thatvwere needed to eradicate the cancer 

sorry it’s not pleasant news but hang on in there .

ps my cream was sobrederm ,just checking that when he is having treatment his neck has no cream on it ,inwas told onky apply cream after treatment I used to do it in changing room

hazsl,x

Hazel you are a star . Will will carry on with the prescribed . I did actually just read last night not to put anything on before treatment and we were ! Yikes ! Bit I stopped that today and put it in after his treatment today . Why don’t they tell you this beforehand ? Anyway I saw your burns Hazel they looked nasty . I’m not showing Chris ! ;) Thank you again x x x

Hi no worries ,you can’t take it all in there is so much info your brain goes into overload. No aftershave or shaving as well ,soon Chris won’t need to shave in the neck area anyway ineemember the guys who were with me said it wasn’t the only good thing about it all they stopped shaving !!!!

alao at showmen ir bath time no  perfumed  or scented stuff I used   simple soap non allergenic stuff ,alsomon nexk area just Luke warm water lin fact i only        had  a bath as showers hurt too much later in to treatments. 

Anither good tip is Manuka honey for gargling don’t buy off amazon unless it’s from a certified seller ask therevare a lot advertised as +25 factor when theybdont use  new Zealand method of factor. I used an Aldi one at factor 10 gargle  warm water it eased my throat

night night good luck get nurses to looknatbChris neck they will have come across it plenty if times

hazel  

Hi there - Love the way the RT gives different gifts to different people. 3 years down the line and the old taste buds are still playing havoc with my shopping !! One day he can eat chocolate  and in particular waggon wheels are the biscuit of choice - I boat a boat load and low and behold now he cant taste them ! The next was egg custard tarts - Ive got a fridge full and he cant taste them now - Hagen Daz ice cream ( nothing cheap of course !) but the cold turns his taste buds off completely. The only consistent thing is Evian water which to Paul the water conisseur us like a fine red wine always to be enjoyed in copious amounts - lol.

As for the creams for the radiation burns - as Hazel saud be guided by your radiotherapy team. We used sorbaderm cream and then when the burn appeared over 2 days allevyn foam dressings and intrasite gel. You wouldnt know he’d had it and the consultant even remarked on the softness if his skin much to both their amusements - not something you hear one man say to another very often lol 

wishing everyone all the best 

Emma xx

Thanks Emma & Hazel . 

No shaving since start of treatment & I don’t put anything in the bath water. He still has his taste buds but food is becoming softer now as his throat has become sore. Halfway through now let’s see what the next half brings! X x 

Gosh Dave - sounds really strange and thats one side effect Paul didnt get ! There should be a guide written by those whove been through it as Im sure the medics don’t know the half of it ! lol 

best wishes 

Emma 

No  worries I never lost taste buds which was a double edge sword as I could taste everything but some times I would accuse John of over salting things. Oops as if I would  dare to accuse him. Lol. 

Yep Emma we’ve got a fridge full of what I call my fancies. Today I wanted an egg custard wish u had known you had a fridge full u could have sent me some. John gad the temerity to sayveggs incuoboard make some lol as if

night everyone

h x

Hi all

So a follow up with my medical support team yesterday and a little more insight on my next steps.

As I have been religously following my action plan, I have managed to put on a little weight which pleased them. Their whole objective was to have me put on a little weight then have stabalised then a controlled weight loss. My partner did raise concerns eating so much fatty foods/creams/butter and maybe solving one problem but creating another.
So anyhoo, now they feel less concerned with appetite and have seen that I can gain weight and the fact swallowing is functioning ok, I am now to slowely revert to a more healthy regime and a more balanced diet. I still have to take the complan supplements for at least another month, but now more fruit and to introduce a little more healthly meals and more balanced. I have to cut out the **** in my diet  and out go crisps/choc pretzels and my beloved mini curly wurlys etc.Darn it !
Heads spinning a bit from told eat as much fatty and whatever you like ( even fish supper for breakfast if I wanted)  to being told now, ok thats fine, job done, back to more balanced healthy.. Just when I was starting to enjoy fish suppers/crisps gummy sweets etc. Well I'll do as I'm told once I finished my stash of pringles and M&S tottilla chips and my bags of curly wurlys.
I mentioned muscle loss as well and was told all the weight loss would not just be fat and in addition to all my inactivity my body composition will be breaking down muscles as well and will indeed have lost quite a bit of muscle and strength,
I have to start gentle walks and introduce some more exercise into plan now. They have a programm called Move too and I'm being referred to that as they can tailor an exercise plan sppecifically to help me as well as monitor progress and weight. 
Sleep still fragmented, but again referred to the quote of up to 2 years before potentially back to full new normal. Told to cut meds down slightly if I can do as I personally feel that contributes to fatigue so that should be another component to help.
Appointment in to see dental consultant in June and I have oncologist consultant next Tuesday for my regular MOT.
Also full set of bloods taken to check thyroid/iron etc from Gp this week.

All in all I feel lot progress made and the medical team have helped so much and although still a little to go re fatigue feel slowely improving. Off work until 30th May then have to have a long phased return to work and was also supported by Occupational Health work consultant.
I have had tremendous support from so many of the medical team and they all work together as a team bringing all the different components together and they even make a positive mental difference.
Back seeing them again at the end of the month to check on progress so they are keeping a good eye on me and monitoring closely.
So i guess its really helped me understand more about the type of foods we take and when to take rich fatty foods and pile on calories to then when to call halt a little and start to introduce a more balanced healthier type of fuel but ensuring nutritional value as well as taking complan shakes for quick energy bursts.

Just a further supplement to previous post re good and wasted calories and now little explantion from them how body composition changes and muscles are being broken down as well as fat as my body looks for glucose and energey from anywhere it can get it and its all tied in. 
Fatigue was put down to purely radiotherapy treatment still residual even after all this time so was told just have to learn to accept it and part and parcel, but now time to start more exercise.

All good, all positive and another step forward.

Hope this update helps at least one person and i know Graeme for example, you were having a little issue with weight and muscle loss, so hope that is getting back to normal as well. I guess overall message that once stabalised, is to have a sensible  balanced diet but accept we might occationally need a short sharp intake of fatty calories to help heal bodies

Wish everyone well no matter where you are on your journey and I'll maybe do a further update nearer end June when I will have at least started doing some work and also see what my dental consultant has to say about my gums.

Onwards & Upwards
Ian

Been awaiting your update Ian PM  sent, best wishes and thanks.

Been awaiting your update Ian PM  sent, best wishes and thanks.