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.

Dave i lost nothing during treatment at all, but 4 weeks after it ended and i got the rash, i noticed it, was deffo muscle loss. Ok an inch off waist maybe but biceps not pushing shirt now, chest less ( that is fine!). Was never overweight, just healthy eater, but confess i drunk a lot of booze and that has been gone 4 months , so a big calorie loss cumulatively. But Ian had given me a wake up call, his team gave great info on why it happens.

Thanks everyone for your updates and useful info from Ian. Well done Dave for beating it!! My partner is 2 months post treatment. He's eating well but can't taste much and not really enjoying chocolate (he got socks instead of Easter eggs!). He's still underweight (58kg, almost 6ft) and does get very tired. We're both self employed working together, so I'm still doing the physical work and he stays home and does the accounts and rest (lots of catching up to do for both!). Does anyone else find they're really cold? His hands are like ice blocks despite wearing many layers. He will have his PEG tube removed in a few weeks. He hasn't used it much for nutrition lately, but will finish off the rest of the ensures. He did amaze us by coming to Disneyland Paris and did lots of walking, despite hardly going out before then! But he was very tired and had early nights. For those starting treatment, just remember you'll get through it! My partner looked like death a few months ago, my young girls found it hard to believe he wasn't dying as he looked so ill and he hardly communicated with us for 2 weeks. But now he's so much better, and hopefully like Ian and others on here, beat it. And never be afraid to ask for help.

Hi, yes icy hands are the new norm for me , drives me nuts but docs and consultants seem unperturbed, and thyroid normal. But very annoying indeed.

I wonder if it passes, and I wonder why it happens. 

Hi Louiable brillthat hubby got to go to Paris with you. Would’ve bedn good to have him there . Please keep us up to date with your progress I am niw 8 month post radiotherapy still need a 20 min power nap. Am sleeping over 8 hours most nights now still git saliva issues but getting better daily. 

Tipfor anyone struggling with bread .buyva toastie machine ok crap sliced bread but hey guys it’s calories we are after lashings of lurpack cheese n ham or whatever you fancy it makes it much easier to eat. 

Ian ,Graeme and Dave yes I’ve lost muscle Masson,y on my arms no longer got bingo wings they are niw bingo folds nit happy but still wearing scrappy tops n bikinis I look at them as my war wounds .totally agree with Ian it’s taken some getting used to jn my case as always bought low fat yoghurts etc s now it’s straight to the full fat versions golden syrup on my porridge every day. Extra cream in soups .luckiky my  biking has kept my legs in decent shape .will be updating my blog in next few weeks with tips  n photos.

good luck to everyone no matter where they are in treatment positive mental attitude will get you there

hazel x  

Hi zgraeme yes the icy hand stage should pass I got ut around you4 stage  now it’s nit all the time and onky finger ends. My oncologist said it’s all about our body thermostats that have been fried due to treatment and when blood circulates it’s protectingbthe vital organs first heart kidneys etc and fingers n toes are at the extremities that are farest  away if that makes sense. It’s like everyine on this path we are all the same but different and get things at differing times. .

ps won’t mention Man U games yesterday suffice to say we were bad heaven help us Wednesday 

hx

Hu Dave ditto re muscle mass mi e only on arms bingo flaps instead of bingo wings. Muscles also waste away without use so in my case although I’ve kept my leg muscles biking haven’t really been carrying lifting or dusting pushing hoover etc much over last 12 month scary that cancer pathway started 14 May last year !

wont say much re yesterday’s game but we were poor 

h x

Glad it’s not just me then everyone seems to have muscle loss, my arms and legs look pathetic at the moment but I suppose Im still early stages in recovery, yes Iv had the cold hands too when the weather is cold but ok like now on a warm day.

We better keep quiet about United Hazel, :(

Dave

Hey super Dave better get some kryptonite soon can’t have u wasting away. Lol. Yep let’s not say anything about footy. 

Mid you gave a decathlon near u they do some good exercise tension bands for building legs n arms back up 

h fingers x fir Wednesday 

h d

Just when we think the thread has offered  all of its help we get more. I  got shrugged shoulders from my docs about cold hands, and muscle loss wasnt mentioned. But now i find it is common among us. Thank GOD for this forum and Ian's thread, let's keep updating folks, this road  is longer than i thought and even an update just when we want can be invaluable, today certainly has.

Just when we think the thread has offered  all of its help we get more. I  got shrugged shoulders from my docs about cold hands, and muscle loss wasnt mentioned. But now i find it is common among us. Thank GOD for this forum and Ian's thread, let's keep updating folks, this road  is longer than i thought and even an update just when we want can be invaluable, today certainly has.

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

He’s definitely economical with the optimism Ian :D but I look at it this way I won’t get any nasty surprises with him he pretty much gave me worst case scenario all the time but was dead straight and honest which suits me, the treatment plan he gave me has worked so I can’t complain.

Dave