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 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 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 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 Emma- Thank you. Can I ask you something you mentioned-you said I am near to the 'toughest part'... I know you said your hubby was admitted into hospital-with what? I can't imagine things getting any tougher!  My hubby was very nearly admitted with dehydration but we just managed to swerve that, that was a low point, but I find each day, even each hour he is very different. I just enjoy the times he's feeling ok. xx

Hi there Other Half - of course you can ask what ever you like and if I can help then will.The Oncologist may have mentioned to you that the radiotherapy continues to work for about 2 weeks post treatment with it building to a crescendo at about 10 dats when the side effects are at there worst. Paul had severe vomiting and nausea plus copious secretions that I just couldn't manage at home despite his RIG. He couldnt tolerate any fluids and was so dehydrated that he needed to be admitted for a syringe driver and IV fluids. Everyone is different but I think that they all experience this ramping up of side effects and not having the daily visit to the hospital fir support can make it a really anxious time.

Wishing you luck for the last few days and please feel free to ask any questions you have Im here to offer support.

best wishes

Emma xx

Thanks Emma-that's useful to know as no one has mentioned about the 10 days post treatment, I will be on guard that day!! I think my hubby-Joe may get a bit frustrated as I think mentally when the treatments finished you want to return to normal & it sounds like that just isn't the case. But we will get there in the end! 

We've had the analgesia bumped up a bit today so that should give him a bit more ammunition to fight this battle of swallowing! 

Thanks again- it's really helpful & appreciated Joy xx

Hi Hazel

Mark is originally Bradford, now living in sunny Devon. He’s tough but not as tough as us local lasses but I have enough fight for both of us. 

Thanks for all the advice and tips, I have a napkin of scribbles as my bible so far!

Treatment starts on 27th, half term week for us which is a *** but no way we were delaying. 

We would normally be spending the summer backpacking around south east asia, this year we are looking forward to a cheeeky week all inclusive in Menorca. It had kids pools and all that hell but they will love it and seeing as we are going to rip their bubble apart I think they deserve the fun and us all the alcohol and sun we can consume before that hell turns into radiotherapy hell!

Just starting to tell people close to us and I’m. It sure it feels real, I find myself consoling them and then having to listen to tales of left up toilet seats etc, how cancer focus’ the mind!

Jo. X

Hi jo it’s quite common even me the patient had to console othervfsmily members. !!! Refer them to my blog then they will see the hell thst csn be radyit will shut them up and save u the hassle. 

Yep us lasses are tougher than men me bring female 3 % are femsje that get  it are female the men couldn’t understand how I was coping positive mental attitude got me there. Tell your little ones maybe don’t mention the c word we didn’t with our 8 years old grandson just said nana going to have a very sore throat and may not be able to swallow so might need a feeding tube for a while. We let him taste the food supplements hevdoon dtoppedvasking after that justvssid nana they are vile poor u. Kids. 

When is Menorca then ? 

H d

Hi Jo 

No problem any time. Im surprised they haven’t mentioned that the side effects ramp up just when you think youre over the worst. I always say just batten down the hatches - you know its coming so you are forewarned and can be prepared. Pauls neck also broke down during tbus time and needed specialist dressings to manage the pain and exudate. Although youre no longer sering the medical staff everday don’t forget uou can still phone them and get him reviewed if you’re concerned that he isnt coping or is more unwell than you expected.

Keep on with the pain relief- you get no medals for suffering and tell Joe that this is perfectly normal as he comes to the end of the treatment stage. 

Stay strong and we’re here to support you both.

best wishes - and as Hazel says onwards and upwards 

Emma xxx