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-Thanks for that, nice to chat to people in the same *** boat-but yes I feel more positive after reading all your posts on here.

Yes may ask for a nebuliser, will keep that in mind-we have a humidifier-got one early after reading about it on here & it's really helped him.

I read Ian's & John's info afew weeks ago & they were really helpful- We are-well my husband is on Oramorph now, we've just up ed the dose to the maximum & it's helping-as the symptoms get more intense, but only 9 more rads to go & 1 chemo so hopefully we will manage. And no the NGtube doesnt worry us-if needed he will 'gladly' have one.

Haha- that made me laugh you saying you were a prima donna! My husband is soooo much like that at the moment & it's not like him at all-I'm running around like a headless chicken & glad to be as it must be so hard to deal with all of this- our daughters laugh at what he's like (not that he knows this ;-)  ) But it is hard seeing your loved one suffer but today hes' doing good so I'm grateful for that.

I'm also grateful for this chat room- thanks all & hope you're all having a good day too. It's very encouraging to hear you are doing so well now- & lucky you just been to Spain!  We would normally be enjoying holidays & stuff now but had to cancel 1 in April & postpone 1 in June to sept-but am looking forward to that & hopefully bgy then he will be ok. But this is how it effects everyone I guess, & makes you appreciate your health when it returns. Joy x

Hi there Joy from a fellow other half ! My hubby was diagnosed with SC Ca tonsils with lymph node tumours in Dec 2015 and after 5 cycles of Cistplatin chemo and 30 fractions of VMAT radiotherapy plus a neck dissection he has been in remission and cancer free for nearly 3 years. Its definitely is difficult to watch your loved one go through such difficult treatment which impacts every aspect of their and your lives. Its definitely true that we run round keeping everything together- getting them to the treatment, ensuring they’ve creamed their necks, taken on fluids, tried to eat, take their meds plus keeping the home going. Were glad to do it as we want to give them the best chance to get well but it can be tough and very lonely.

. Paul tells everyone that he thinks it was more difficult for me than him as he was so engrossed in just getting through the day and feeling so unwell that he didn’t really realise what was going on. In fact its like child birth - the brains way of coping with such a difficult situation it just shuts off and he cant remember alot if what went on. And yes he admits it was an ‘all about me’ situation that we can laugh about now - diva is the word. 

Wishing you loads of luck with tbe rest of the treatment and if you fancy chatting then send me a friend request and Id be glad too.

best wishes

Emma xx

Thanks for that-yes I bought a humidifier early on-as I read somewhere on here..they helped and he has it on most of the time, says it really helps. Good your husband is benefiting form one too.

When is the last day-Thursday? As my husband has 9 to go & 1 more chemo (not looking forward to that).

Yes it's a tough road but worth it to cure and return to a normal life.

Hope you and your husband are doing ok at the moment.

Take care Joy x

Hi Joy thanks for kind words. Just remember when trestment finishes that’s when the hard work starts   I liken it to an oil filled radiator that’s got to Leech out the radiation and chemotherapy over a period of weeks radiation tiredness is like no other read Ian s blog onbthat had and still us suffering from those side effects. But look forward to your holiday since treatment finished ivevfone s 16 day a 18 day and just returned from 8 weeks just west factor 50 on his neck bkendrdcwith s bitcof fske tan if vain like me. Lol. Yep a vain prima Donna. Pluscsclight scarf 

kerp inbtouch h xxx

lol Hazel - get a spell checker

nice to see your back safe n sound and hope you brought the weather back with you.

ian

Great to hear you are in good form Hazel, your posts are hilarious as well as informative

Dave

Hi all,

Just for info in case any unaware and wondering re frequency of check ups post treatment.

At my check up today with consultant - (just a little swelling still back throat but its fine)
They feel neck, have a look around mouth and I got scope via nose. and ask you how you are feeling/getting on. Appointment lasted about 15 mins I guess.

Anyhoo on checks ups I was told ( assume same for others )

Check up every month for first year after treatment

Year 2 to 4 checked every 3 months

Year 5 every 6 months

Hopefully then all still clear and in remission and no further checks.

Onwards & Upwards
Ian

Hi Ian brought the rain back with me ! Has brill crossing was quite worried as last May I was in a state in the boat , obv didn’t know at the time that it was the cancer upsetting my equilibrium! Spelt that without a spell checker. Lol ! My brain works too fast for  I pads keyboards that my excuse or other excuse I missed the week at school when we did spelling !!! Plus no one would have anything to laugh at if I didn’t do  typos  i have  proof read the above and maybe for once perfecto ! Grammatically rubbish probably. !

love being away but  like Insaybto John it’s a fantasy life we lead over there back home it’s the real world and wouldn’t want to be there permanently.

cathcing uo with game of thrones and tour de yorkshire

keep in touch buddy onwards and upwards.

H x 

Hi Ian just shows how things are different in different areas .

i haven’t had a scope up this diagnosis day mine don’t believe in doing them after that 

year one every 6 weeks ( I negotiated holidays ) saying you told me to go and live my life so that she what I am doing with provision I would fly home immediately if I felt anything wrong .

year 2 every 2 months 

year 3-4 every 3 months

year 5 every 6 months.

My check ups are flashlight down into mouth whilst he holds my tongue with a piece of gauze,that makes you feel sick.Good feel of neck area and general conversation of how I am feeling eating etc .

Maybe it’s coz us Yorkshire birds are tough !!!!!

Hope this helps people as like we say we are all different with the same diagnosis.

h x

HinDave how are you doing glad I make your day !!!! Back in good old Blighty .wwont ask what the boys are doing but a few of them need their p 45 s pretty dam quick without big payoffs . 

Thursday night europa leagues not going to do us any favours next season either.

keep in touch superman 

H xx

HinDave how are you doing glad I make your day !!!! Back in good old Blighty .wwont ask what the boys are doing but a few of them need their p 45 s pretty dam quick without big payoffs . 

Thursday night europa leagues not going to do us any favours next season either.

keep in touch superman 

H xx

Im good thanks Hazel, still dry mouth problems especially when excercising playing football etc, I get bouts of fatigue too but overall good thanks, I have a check up mid June then every 2 months (I think) we are off to Gran Canaria at the weekend first holiday since last September when all this started, really ready for it :)

Dave

Hi Dave enjoy the holiday Julie amd yiu will be ready for it , justbremember factor 50 for the neck and mix a bit of fake tan in with it yiu will be fine. Plenty if water for flight unfortunately yiu will have to pay WH Smith a arm and a leg airside for it but I found flying dries me uo before and does more now .enjoy have a brill time

h x ps go into mercadona supermarket whilst away get Trident dental chewing gum with xylitol in it ut really helps I’ve brought loads back 

h x

Thanks Hazel good points I expect aircraft cabins can cause us to feel dehydrated, noted thanks.

Dave

Hi Dave i flew from Tenerife to Edinburgh and back last week, took 1.5 litres with me each way, with that and gum i was fine,no other issues, but booked aisle seat both ways for loo and to stand plenty. All worked great, bit dry nose. Glad you are doing well.

Thanks TFS all tips appreciated

Is there some kind of epidemic going on with HPV related throat cancer? 

Iv just found out about someone else who has got it and his mate has it too.

Dave

Dave

Few of us in private messaging have been commenting and noticing the increase of cases on here as well.

Shame and not great to hear or see. All we can do is try our very  best to help all on here.

ian

Its worrying Ian, have you noticed that its mostly white people getting treated too? its something that I noticed at the hospital.

Dave  

Yes Dave the USA indeed call it an "epidemic" this HPV related cancer.

There is no vaccine to clear HPV from our systems as far as I know but certain vitamins can help clear it, is anyone trying anything or have any more info?

Dave