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.

Great stuuf Luiosabel and glad to hear how well hubby is doing.

Even more impressed he got to PAris with family so that was a great boost.

Figurers crossed contunues way he is going.

Onwards & Upwards

Ian

I agree Graeme and this has been a great thread for  help/support and tips and so many of us have pulled together for each other and sharing experiences. I certainly have found this invaluable.

I'll keep updating with anything I can of value.

Ian

Yes! As well as being underweight my partner has lost muscle. So much so I'm surprised he has any strength left. He amazed me this week by going to my allotment and doing some digging! (I haven't been there since October!). I didn't ask him to go, he did it on his own accord. All I've told him to do is try go for a walk everyday.

While we are mentioning side effects etc, Iv had a strange one that Iv just found is related to head/neck radiotherapy, when Im out walking which we do regularly Iv been getting mild electric shocks from my waist down the back of my left leg in the last few weeks.It only happens if I tilt my head forward to look down.

Its called L’hermittes sign, Iv literally just googled this and found out what’s causing it, it’s not painful, more a strange sensation or mild electric shock, anyone else getting this?

Dave

never heard of that one Dave and nope not effected by that at all.

Is this every time you look down or sporadic?
I'd probably mention to your team..do you know if temporary?

thats a stange one and sounds unpleasant albeit not painful.

Hope clears up for you

ian

Just started reading up on it Ian it appears to be uncommon and usually passes in time it’s basically nerve damage from the treatment, I only get it when out walking and not there all the time i’ll mention it to my team.

Edit, nothing on this site but some info on the Macmillan forum, it only occurs in about 21% of RT patients and shows a few months after treatment has ended, it’s temporary and will go in time, thank god for that.

Dave

Hi DAVE

nope not got that one ! Yeah somethungbme and Ian haven’t git and yiu have. Although in the early days I did go through a phase of when turning lights in I got a burning smell and an adrenaline rush plus fused lights a few time. Got told it was the radiotherapy coming out of me a rare phenomenon thankfully it soon went !!!

Yep head and neck cancer is certainly a varied one ,we are all so special.

H x

Doc said at the start..”RT will do strange things to you” 

he wasnt wrong Hazel

 Dave

Dave

can't help but notice that your doc seems a right cheery wee soul.

ian

Nope he wasn’t ,woukd have been nice to have a bit of an idea of what to look forward to though ! Jihn swore blind I was making most of it uo and it’s taken him ages to get his head round the fact that one day I can eat something then 2 days later not a chance .latest is salad cream last week was fine with it today no way leaves metallic taste. Hey honthe cancer that just keeps on giving. But at least we are alive to laugh at it. 

H xx

Nope he wasn’t ,woukd have been nice to have a bit of an idea of what to look forward to though ! Jihn swore blind I was making most of it uo and it’s taken him ages to get his head round the fact that one day I can eat something then 2 days later not a chance .latest is salad cream last week was fine with it today no way leaves metallic taste. Hey honthe cancer that just keeps on giving. But at least we are alive to laugh at it. 

H xx

I don’t think they want us to know half of it Hazel which is probably a good thing.

Dave

True most people would freak out. You wouldn’t or maybe you would believe the number of people that when they saw my mask or photos of it say they couldn’t have done it. My stock reply was no choicecas death was the alternative itcsoon made them realise it wasn’t a game !!

hx

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 

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