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.

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 Lemonice,

All of us have an interest in this subject for obvious reasons and I have found your posts fascinating and most welcome. 
I personally think its great to learn more about this as I have been personally effected and its refreshing to hear some scientific aspcect of the disease. I was interested in some of the advice and more techincal aspects and scientific advice from my medical support team but you have added quite another dimension. One of the postive aspects from your posts is the advancing in knowldege around this and this gives me hope for the future and that one day there will be more pre ventative solutions.

Many thanks for sharing a wonderful insight

regards

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 there Other half - its great that you’re staying so positive and Im sure thats keeping hunby strong as you get towards the toughest part of the treatment. My hubby had 5 cycles of chemo and 30 radiotherapy sessions and although was quite poorly needing hospitalisation at day 10 post treatment that was at the beginning of March 2016 and by the end of April we went away for a long weekend and he managed to go on fairly long walks. The eating was the main problem but if we planned ahead and I always had water and snacks in my bag just incase then we were fine. Your holiday in September sounds like a great trip to look forward to and something to plan towards in tbose down moments. 

As everyone is saying you definitely cant put a time on tbe recovery phase as everyone is coming from a different place of mindset and initial health. Paul was a fit 54 yr old who despite having a tonsillectomy - post tonsillectomy bleed at 10 days post op - teeth extraction under GA - recovered fairly well post treatment  and although the fatigue still lingers now in tbe May of 2016 so 8 weeks post treatment was running 3 miles again.

Good luck for the rest of the treatment and keep positive - that holiday is beconning 

Emma xx

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 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

Sorry to chip in here .... don’t make the same mistake I did with my husband applying cream just before he went for treatment ... it’s a bit like greasing a chicken before it goes in the oven oops .! I cream his neck all day long  . I hope your husband is doing ok , 4 more treatments left for mine ....thank the lord xx 

Thanks all

Hazel, Menorca is this Friday, cannot bloody wait. We have decided to be very honest with the kids, the eldest is 10 and rwmembets loosing her uncle to the same cancer 4 years ago, she know he’s had his tonsils removed Ed and as soon as we mention there is something wrong she will link the two and think can we. Not only that but we are both medical so she is pretty exposed and I think avoiding the ‘c’ word as some friends have suggested would loose her trust in us. 

Hi Emma

wrve had very little support or guidance, if any really, all our, or rather my knowledge/expectations come from here. Diagnosis 8 weeks ago and we’ve seen a CNS twice, we’ll diffetent ones that pass ownership to the other. !

Ginpo, thanks. We will avoid all creams u TIL directed, someone mentioned an aloe Vera type spray? Xx

The hospital have given Chris all  his creams . First we had an emollient , next came the Gel & once treatment ends we will be given silver nitrate. The hospital have been really on top of all his pills, creams throat sprays etc. Just been lent a nebuliser , nothing seems too much trouble . We were told just to use the creams prescribed by them . Nice and cold from the fridge ! X x  PS have a wonderful holiday . X

creams we have been given are. Diprobase & Flamigel RT 

Hi jo nope to aloe Vera spray once treatment has started the radiotherapy teams need to know what’s been used if problems occur they have to start back tracking. Even after treatment TFS Who posts on here got into a mess using aloe Vera if I describe my neck 8 month post radiotherapy as a baby’s bum that’s Hiw it feels. I onky use a factor 50 sun cream nothing else. 

Dont worry when trestmrntvsrarts am sure you will get the support. 

Ok you know your kids best ,we chose not to only with James as I know he woukd have gone straight on y tube bless him. Enjoy Menorca suggest hubby protects neck with a factor 50 

h x