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 no problem if I can help anyine through this I will only too happy to pass in anything I’ve learnt. The main point I want to try and get through to the cancer hospitals is the 10/14 days after treatmentbwhen they say yiu will feel ill then you should be fine they are way off the mark with that ! I have been in contact via my blog and various forums with a lot of people any very very few feel well after 2 weeks. What they should be saying is recovery is very individual in rare cases it could be 2 weeks some will be months and a small percentage could take uo to 2 years.

what you’re hubby needs to remember is after treatment finishes it’s like being thrown into a lions cage we’ve had constant support seen medical teams for weeks then all of a sudden  not a lot ! Of medical support. I was lucky and my oncologist becasue I was a female with a mostly a make cancer he wanted to monitor me  a bit  closer.

I did have weekly meeting with the Macmillan nurses which really helped .

I do know if guys who being the macho make in ine case on the first Monday decided to drive 40 miles ,needless to say he ended up phoning hime as he nearly caused a pile up on motorway.We just don’t have the concentration to start with. I am like Ian (Anchor 1707)  an avid reader but neither of us picked a book up for months .its strange but after treatment it’s all stored in our bodies and slowly releases. 

Please don’t think I am putting a downer on it , remembers 8 weeks post treatment we flew to Spain for 16 days and I rode my bike. !! Some say I was too early but it was my goal ,set yourself little targets. 

Thank you for kind words. 

Hazel x

Oscar 2020- Wow 35 times! Thought we'd been alot! We love Greece too-esoecially the quieter islands- we were booked to Paxos in June-had to postpone until mid Sept but still going so happy with that.

I'm not surprized you are returning to Skiathos-it is 1 of my favorite islands- please let me know how it was as I love the place!! Enjoy xx

Hi Hazel- Ah I was going to ask you when you finished your treatment- but 8 weeks is good going! We had a holiday booked to Greece in June -but postponed it until mid Sept-hoping my hubby would be ok by then but that gives me hope! & cycling too-wow! You're either super woman or a crazy woman! But good for you-that's positive for you! I was telling him you'd returned to normal (ish) to go on a cycling holiday but I thought it was something like a year after.

But yes I appreciate everyones different & it requires patience but having a goal (or holiday in most peoples cases from what I'm reading) to aim for & look forward to is good too.

Thanks again-your advice is really helpful & encouraging-have a good weekend x

Otherhalf last year we went Island hopping we did Naxos, Paros anti Paros and Santorini, it was in the few days of that holiday that I started with the symptoms, spots of blood in my mouth.

Those Islands are stunning and I can recommend them all, Skiathos has everything and I can see why you love it so much.

Dave

Hi it’s wasn’t easy but I had booked the flights we have a long term rental apartment and hubby was desperate to go as we would usually be there mid August last year and I was otherwise engaged with a mask and radiotherapy table !!! I made the decision that I was going dontbget me wrong right uo to them moment the aircraft door closed I could have gotten off .but honestly it did help me on my recovery. I still have 20 min power nap most days but now sleeping 8 hours every night so there’s is light at the end if the tunnel .

good luck keep,in touch 

h x

Hi! Thanks so much, I find this information really helpful because the more we now, a better treatment will come. And also because it's increasing in incidence and could turn into a huge problem in the future, I think as a society we don't give as much atention as we should to this. I wanted to update a little bit more with some information I found recently and I think could be interesting. 

As I said before and probably you all know, since being HPV+ has a more possitive prognosis, a deintensification of treatment is being tested. This could likely lead to less side effects and associated risks of radiotherapy. There is people trying to *** who could benefit from this and a test is being evaluated to find what people tend to have a worse prognosis by finding Circulating Tumor Cells. This CTCs are like seeds, they are in the blood and are the ones that could lead to additional tumors. It seems that maybe, evaluating the existence of CTCs prior to treatment could help planning the treatment ahead and deintensificate it in case it's negative.

Also, most people after treatment are followed up to see what's going on, having the camera down the nose and some scans. This could change in the future since we (by 'we' I mean the scientific community) are investigating how circulating HPV DNA could be used as a surveillance tool. It seems that people who don't have circulating HPV DNA after treatment are way less likely to suffer a recurrence. I think that, if this turns true, it would be amazing. Not only to calm the patient after treatment in case the test comes back negative and maybe not exposing them to more radiation at so many scans, but also to follow more closely those ones who are possitive. 

Also I wanna say that I constantly use "maybe", "likely"... Because articles are based on limited data that at the end may not lead to something that will be used, but are investigated since even fails are useful. 

Here's the link to an article that talks a little bit more about this: www.ncbi.nlm.nih.gov/.../31071126

Have a great weekend :love:

Hi lemon I’ve brill thank you if I can help in any way on your research just ask . Are you still in Spain we returned last weekend ? 

Will read the article avidly 

Hazel x

Wow have just read the article very interesting facts , will be interested to know more when eventually done. Is this a Greek study looking at the drs names ? 

Hazel 

Hi Lemon - some excellent information here and also some other Informative abstracts to read. Ut will be interesting to see how treatment regimes change for OPSCC’s that are HPV+ and non smoking -as opposed to OSCC’s and OPSCC’s that are HPV- or smoking related in the future along with the interesting research into the biochemical markers to predict reoccurrence. Im sure my husband - although has the nasopharyngeal camera with no complaints would be interested in an alternative.

Keep on with the info its really useful

Emma

Hi Other half

I really hope that huuby is able to make holiday in mid Sept and really hope recovery manages to see that goal. I'm in no way trying to put a damper on, but a little balance that as we all state, we are all different and some can take a little longer to recover I unfortnately am one of them and would not have been able to travel abroad in that timeframe. We had to cancel 3 trips abroad as a result of my diagnosis and my partner is really disappointed we have nothing booked this year but understands.

That said, so many do bounce back quite quicky, some take a month or so and some witll vary over timeframe. Again I really hope holiday is possible and am sure will be.

As for Hazel, on the richter scale of crazy 1-10, Hazel is 12 !!
I call her the roadrunner and is always pinging about somewhere in some country up some mountain on her bike, but she is a fabulous insipration to so many to show what the art of possible is.
 

Onwards & Upwards
Ian

Hi Other half

I really hope that huuby is able to make holiday in mid Sept and really hope recovery manages to see that goal. I'm in no way trying to put a damper on, but a little balance that as we all state, we are all different and some can take a little longer to recover I unfortnately am one of them and would not have been able to travel abroad in that timeframe. We had to cancel 3 trips abroad as a result of my diagnosis and my partner is really disappointed we have nothing booked this year but understands.

That said, so many do bounce back quite quicky, some take a month or so and some witll vary over timeframe. Again I really hope holiday is possible and am sure will be.

As for Hazel, on the richter scale of crazy 1-10, Hazel is 12 !!
I call her the roadrunner and is always pinging about somewhere in some country up some mountain on her bike, but she is a fabulous insipration to so many to show what the art of possible is.
 

Onwards & Upwards
Ian

Hi Ian you posted at 0826! Does this mean a full nights sleep ? I really hope so. Good to see the threadxas come to life again not good that more new people are being diagnosed though. 

Goid luck to everyone no matter where you are in the treatment scale like Isn says light at the end of the tunnel and my saying baby steps. You will all get there some quicker than others.  Yep roadrunner grounded for mundane tasks supermarket, weeding and even ironing beckons. Normal service if sun shining next week.albeith probably 15 degrees coooler and in thermals. BrrrvAgain echo Ian’s comments to [@lemonice]‍ thank you fascinating pieces keep them coming I am of the school the more I scientifically know the better I can understand. 

Have a good weekend and good luck to all who are donning the masks on Monday. 

Hazel aka roadrunner xx

Hi Hazel

yup lol slept for 12 hrs...bed 8pm woke 2am but turned over and slept right through until around 8am and feel the benefit for it.
Hope thats the start of some normal..
In fact, Im thinking of hitting one of the scottish mountains today lol...nah only kidding. I have some way to go to be as crazy and active as you.
Like you, i;m not over impressed with having to start to do things on our own and partners not catering for our every whim. Ah well, just another side effect.

Yeh, the thread has been quite active again so that good in a way but as you say and as Dave pointed out, there does seem to be an increase in cases appearing so disappointing as well.

Keep up your inspiration

ian x

Hi Ian-Thanks for your response-yes I realise the time frame where it varies with everyone & I know we may not get to our holiday but I just hope so. As you will know with all of this there's alot of negatives & not much good news-so it's just something nice to aim for. Plus we didn't get insurance so if we can't go we just lose out-that's life. The consultant told us to hold off postponing it which was originally early June but I thought best be on the safe side-well as safe as can be. We already cancelled an earlier one in April & have had a fight to get the money back (that was insured). Motto of this story-always get insurance!

When did your treatment finish? & what was it the standard (think its standard?) 35 rads & 3 chemos-thats what my hubbys having, finish next Friday.

Thanks again for the warning-but got to keep going & keep positive-it's my way of coping I guess & i have to keep my spirits up to support my hubby otherwise he would easily go downhill quickly I think.

Anyway have a good weekend & hear you slept well - that's great news, am pleased as that must be tough- good on ya! xx

Hi Other half

Please dont let me dampen spirits as was not the intent and I'm sure hubby will be fine.
I guess was just to inject that there can be odd occasions like mine where recovery can take a little longer, that was all.
My treatment ended last November and I'm still kinda reovering with fatigue the one thats lingering about. Was glad of last nights sleep and hope sign of things to come.
I had no chemo and 30 sessions of radiotherapy.
Bear in mind that I didnt go into this treatment fit and was on the back of a mis diagnosis, four week chronic diahreahha with wrong medication then hospitalised for a week, 3 months steroids, then surgey for tonsil out, recovery, then surgery for back teeth extraction then into 30 sessions of radiotherapy
All in all I think this has had an additional effect on my body and hence recovery period and while I dont think I'm a great baraometer for normal recovery, it is a reality that some do take a little longer.

We will keep on the positives and think good things and am sure hubby will make your holiday in September as quite a few months until then.
Stay positive and think that you are going on holiday as something to look forward to. Another positive is that from this thread alone, there are far more people who recover in a reasonably short period of time against those who dont, so the odds are in your favour.
Superdave was playing football shortly afterwards and Hazel the roadrunner has been pinging about on her bike up mountains for ages.Another I know spoke of a recovery period of around 2-3 weeks.
I'll stay positive with you and sending you some luck dust !!

Have a great weekend as well

Onwards & Upwards
Ian

Hi Ian wow well done with sleep doubt uve ever done a 12. hour sleep so fingers x for start of normality kicking in. 

Go on do a little Munros you know you want to lol. Baby steps like we say , start of giro Italy cycle race today Spanish  g p  football good job we mowed and started weeding this morning. 

Onwards and upwards to infinity  and beyond.yep our other half’s are deffo slacking !!!lol

h xx

Hi Hazel

Yup and really hope start of some normal.

Personally, apart from me not being fit etc and mis diagnois, I'm also convinced now that my medication has a lot to do with. Ive got a bone on spine they cant operate on and Ive been on co codmol for yaers and also have to take one diazapam(only smallest dose 2mg) every morning to relax back muscles.

So between diaziapam,  previously morphine and now back on co codomol I think it will add to my recovery being a little more slow.
If only we could get body part replacements like the car, I would certainly be ripe for an overhaul and in need of an MOT. At least I have my positive mind (so far) and humor and that has always kept me in good stead. I'm a great believer in thinking positive helps.
Good for you re weeding and mowing...We have large hedge ide and back and just had done this weekend.We get someone in whos good,reliable,reasonable price and takes all the trimmings away.
Going out for lunch somewhere tomorrow and will try a little more exercise this week although balk at a Munro at the best of times

As for our other halfs not pulling their weight, its just awful and they have no concience now lol 

Enjoy your weekend of sport and yup -

Upwards & Onwards to invinity and beyond ( Toy Story 4 out shortly lol )

Positve thoughs and luck dust to all 

Ian 

Hi Ian hope you are off to see  buzz n family when come out eevwent to see avengers endgame in Spain big kids I know. I even shed a tear which is probably more than I did all way through cancer treatment!!! 

John has a dodgy back  from time to time when it goes it goes thankfully been  ok for last year but his dose is usually tramadol diazepam cocktail knocks him out  we also have a large hedge in total over 60 foot of laurel over 8 foot high thjnkbwe wil l be getting someone in as well spending Nicola s inheritance once again  lol 

enjoy weekend h 

Hello all, thanks again for being our saviours, your stories are inspiring and I’ve even now got Mark to read Ian and Hazel’s blogs now his head is emerging from the sand!

Sorry, another question. What and when did you start applying to your necks through radiotherapy? Is it worth applying anything before the burns take hold? I think even a Yorkshire man may be able to be persuaded to moistures if it’s going to help in the long run! 

Xx

Hi Bertha

Hazel is more of an expert with neck burns and mine wasnt so bad.
I had for about a week and apllied aqua cream and kept it in the fridge so applied ncie and cold.
Would just watch and not put any old moisteriser on as I was advised it all had to be alcohol free and hence why I was prescribed water based. 
On the timing, my neck was fine all through treatment and only started playing up a bit after treatement stopped and as say only for about a week so I feel I got off quite lightly.
I also did start applying some of the cream nearer the end of my treatment although there was no signs of anything untoward
Hazel will pop in and advise more if neck burns are a little worse than normal.

hope helps meantime and glad you found our blogs helpful.

Onwards & Upwards

ian

Hi where in Yorkshire I am nr Pontefract ? Please please don’t put anything on neck unless radiotherapy team give it to you then only when you’ve had that days treatment not before or marks neck will fry. I had 3 rd degree burns in my neck but all healed 3 weeks after treatment finished my oncologist always knew that was going to happen coz lymph node was v close to surface but he spared me the anguish of telling me at beginning which I was greatful for. Baths no bubble stuff near neck only Luke warm water  try to avoid shower gel  no aftershave either 

from from Yorkshire lass to a Yorkshire lad well done on reading blogs  

we are proof there light at the end of tunnell

send me a friend request if u want to chat 

h x