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.

Hi Emma

wrve had very little support or guidance, if any really, all our, or rather my knowledge/expectations come from here. Diagnosis 8 weeks ago and we’ve seen a CNS twice, we’ll diffetent ones that pass ownership to the other. !

Ginpo, thanks. We will avoid all creams u TIL directed, someone mentioned an aloe Vera type spray? Xx

The hospital have given Chris all  his creams . First we had an emollient , next came the Gel & once treatment ends we will be given silver nitrate. The hospital have been really on top of all his pills, creams throat sprays etc. Just been lent a nebuliser , nothing seems too much trouble . We were told just to use the creams prescribed by them . Nice and cold from the fridge ! X x  PS have a wonderful holiday . X

creams we have been given are. Diprobase & Flamigel RT 

Hi jo nope to aloe Vera spray once treatment has started the radiotherapy teams need to know what’s been used if problems occur they have to start back tracking. Even after treatment TFS Who posts on here got into a mess using aloe Vera if I describe my neck 8 month post radiotherapy as a baby’s bum that’s Hiw it feels. I onky use a factor 50 sun cream nothing else. 

Dont worry when trestmrntvsrarts am sure you will get the support. 

Ok you know your kids best ,we chose not to only with James as I know he woukd have gone straight on y tube bless him. Enjoy Menorca suggest hubby protects neck with a factor 50 

h x

Ginpo-Is your last day Friday? Ours is :-) x

Tomorrow ! He is finishing with a double dose 6 hours apart as he was too sick from morphine to attend last Friday ! Woo! X x  nurses wrapped his neck in cling film before treatment today his neck is so sore .... don’t think he could take much more. Hope your husband is doing ok . Bless them it’s awful . X x

Hi don’t worry I had 9 sessions with nrvk wrapped  in cling film  ,when treatment finishes just remember don’t use any soaps he may have brown peeling patches leave them alone they will go inon there own Like I keep saying my neck was 3 rd degree burn as big as an egg in size but now all I am left with is broken veins that you have to look closely to see .

just keep in your head baby steps ,although I sound like a broken record the next few weeks can be difficult as body is full of radiation.As silly as it sound so I used to turn a light in and the bulbs fused !!!! Hubby stopped me turning lights on for a few weeks don’t know the link but it wasn’t there Along with when he brakes in the car I git hot air coming out of my mouth !!!!ans adrenaline rush feelings. You can’t make it up !!! But like we say we are all different !!!

good luck remember water. Water andmore water will become his best friend if of course he can drink it if not if he has a peg keep well hydrated ..

h xx

Treatment all finished ! Yey :)

Thank you to every single one of you for all your help and advice . Every single one of you has been so helpful and kind . I don’t think you know just how much this little chat room has helped me . 

Lots of love to you all Ginny x x 

would any of you like to see a photo of his mask ? I won’t post if it’s going to freak people out x x 

Great news, the treatment ending is a proper milestone Ginpo. Obviously the side effects won’t have peaked but the daily trudge to the hospital is at least behind you both now.

Dave

Yayy! Well done both of you! Happy for you that you're all done with the daily hosp treck! Was thinking about you today-bet it feels very strange though..? Us next-Friday, can't wait-as you know we need these little lifts! Please keep us updated on progress & how the next few weeks go-if thats ok? & again-congratulations getting through it all :-) Enjoy your freedom! xxxx

Fantastic news and well done for getting to the end of the treatment. Now comes the tough bit so batten down the hatches and at least you’re for warned so you know what to expect. Keep going with the fluids and oain relief and take each day hour by hour. As you wont have the comfort of seeing someone from the medical team everyday don’t forget you can still contact your team for advice if you need it.

Wishing you all the best for the next couple of weeks 

Emma xxx

Fantastic news and well done for getting to the end of the treatment. Now comes the tough bit so batten down the hatches and at least you’re for warned so you know what to expect. Keep going with the fluids and oain relief and take each day hour by hour. As you wont have the comfort of seeing someone from the medical team everyday don’t forget you can still contact your team for advice if you need it.

Wishing you all the best for the next couple of weeks 

Emma xxx