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 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.

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.

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.