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.

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

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