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 Dave. Thank you. Agree totally like my oncologist said to me on day one if he was unlucky to get cancer our version is the one he would want treatment is testing to say the least but outcome is good . Small mercies and all that. 

Enjoy holiday fsctor 50 on neck but otherwise chill n enjoy 

h xc

Hi Ian

lol re football yes agree it’s bern a good season. Woukd like to think Ole woukd hsve kept the job but the fickleness of football nowadays who knows.

Saliva I ferl getting better every day only by small degrees but in night I no longer wake with tongue  sticking to roof of mouth. Bonus. Plus in daytime as long as I have water n my chewing gum around I am fine. Satceating a stick if celery how healthy is that ! Good job u can’t seevthev2 pralines and 2 toffees fir after.   The dribble is still therecas well so that’s pointing in right direction. Consultant said mouth was nice and moist.  Don’t get me wrong it still dries if I eat something it doesn’t like ie apples biscuits. Etc. 

Sleeo last night 9 hours with a loo visit st 0600 so yep dropped straight into it and nope haven’t ridden my bike yet too wet. No tabkets apart from the acid reflux so maybe your sleep will come soon. 

Take care keep in touch hope this helps H x

Ian still have my 20 min catch up nap mid afternoon mist days it is only 20 mins. On boat John was astounded how I lied down shut my eyes dropped off snored who me never !! Then 20 mins later woke up !!

wonderwoman that’s me. Lol 

h xx

Yes the factor 50 will be packed, the skin on my neck is still really soft, no problems with it but it must be delicate? Gran Canaria on Saturday and we’ve just booked flights for Skiathos later in June too, catching up on lost holiday time :)

Dave

Don’t blame you we are doing a cheeky 16 days late June to apartment also. Like u said we lost almost a year last year. My neck is baby soft but factor 50 and s but if false tan mixed with it matched up the bit if colour I got used 30 everywhere else and was fine. 

You and Julie have a brill time 

h x

Thanks Hazel & thats great news you got a good report!  Congratulations- I can't wait for days like that. You're right on my husband will be impatient with the 'recoevry phase'-he will for sure! He already saying-after a week I'll be ok-I keep telling him it will take longer-maybe it's just his way of coping, but i will keep telling him the truth as gently as I can. It's so nice to read your positive threads & to reassure us that you do get over this-so a big thank you from me for that.Have a lovely weekend.

Last week for us ....my hubby has a little post it pad he started at the beginning of treatment , 1st piece of paper number 35, then 34,33 so on-each rad he rips the numbered piece of paper (often with a vengence!) gets our daughters to do it sometimes-as a little help to manage this long journey-down to no.5 now!

Dave-Skiathos is beautiful-you will love it-visit Kolios beach-a few little nice surprizes there xx

Thanks other half we are Skiathos veterans this will be our 7th visit and Greece all over probably 35 + times, love it :)

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

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

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 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 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 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