My husband hasn’t look at one article online . I just do it to prepare myself as it’s going to be a lot of looking after them . Loads of support here Jo it’s going to be a long rd as treatment is horrible . Keep off Google it will do you no good . You will get  first hand no nonsense advice here .  It’s really helped me  . Ginny x 

Hi Jo 

My hubby was a bit like that - it was all ‘tell Emma or explain it to Emma’ as he didn’t want to know - he just said let them get on with it whereas I wanted to kniw all the details ( think it’s because Im a nurse ! ) Take a pen and paper with you on monday as you wont remember everything they say and write down any questions you have so you have them to hand. Once you have a plan of action then it will be easier to procesd. It’s definitely easier once you know what to expect. We definitely have lots if tips and hints to help get you through so please adk away.

Glad youve read Hazel and Ians blogs 

best wishes 

Emma 

Hi Jo

Am sorry to hear of hubbys diagnosis.

Plenty of support and help here and lots of tips and advice availble from many of us who post here.

Note that you mention both Hazel and myself re blogs and they should give you some insight and awareness of what to expect during and after treatment. My own view is it on balance much better to know what to potentially expect on the journeuy ahead and have less chance to be caught so unware or surprised by some of the challenges post treatment.

As Hazel says, the treatment and recovery period can be challenging but I often quite the fact the light at the end of the tunnel actually exists and the chances of success and cure for this type of cancer is really high. 
On the treatment itself, I would say on baalnce its pretty much ok ish and its more the recovery afterwards that the challenges kick in. My blog kinda breaks down each week during treatment of how I felt and reacted.
Please keep us posted on progress and let me know if if there is any way I can help at all.

listed blog link for ease.

radiotherapythroat.home.blog

Onwards & Upwards
Ian

Hi Jo thank yiu for reading mine an Ian’s blogs ,I try to tell everyine keep off dr google the facts like my oncologist says are at least 8 years  ( plus work in previous 10 years reports ) out of date .think his philosophy is look his much the internet has changed in the last 18 years ! So imagine his much better treatment is niw.  It’s was onky about 25 years ago  head n neck cancers we woukd have had 2 wall type bricks at side of our necks to hold us down and Ben blasted from here To eternity! Wheras now niw when being radiotherapy table ask yiurr hubby after the scans which in my case were almost every other day you can feel the table tilt to re position to get accurate targeting. We are proof that it works and are now living our life’s. I did the blog as I am a control freak ! And found it was the onky thing I could control am doing inadvertently now are helping others. Feel free to direct friends and family toothed boogs as it will save you having to go into details every time

please let us k now monday the  results like Emma says pen and paper invaluable don’t be intimidated,there were 9 in my M. D. T meeting I am in the 3% minority’s if women who get a mans cancer so they were clambering over who was going to treat me ! Lol

also ask re h p v status and tumours side lymph nodes and metasis  TNM  hold head high walk tall if in doubt ask questions .

My Oncologist wins the battle due to seniority,and like he says to me he didn’t realise what a giid ine he had caught my blog he uses in his teaching to others like he says yiu can’t compare hand in experiences. He knows the science we know our bodies. 

Advise from now until treatment starts   eat eat plus drink plenty if water. Keep the water uo all waybthrough treatment.

onwardss and uowards like Ian says

h x

Hi Jo

My husband finished his treatment for the same 6 weeks ago - when we got the treatment plan, like yours 6 chemo/30 radiotherapy, we asked why surgery is not done first and were told that most will not need surgery after treatment has finished, especially if HPV positive.  

When you go for your follow up appointment on Monday take a list of everything you want to know, it’s fine to take notes and expect both of you to remember different facts from it.   You may see the whole team that day or that might follow later.  Our intensive support onwards came from the radiotherapy specialist nurses, chemo team, dieticians and speech therapists weekly. 

Everyone’s advice to keep away from Dr Google is spot on, the forum support here is sensibly realistic and very reassuring to here of people’s lives returning to normal after.  

Hi there 

So sorry to hear of Marks brother - thats so sad and so tough that he now has the same diagnosis.

So you have a plan of action and can now concentrate on getting ready for the treatment. Its definitely true that they dont tell you how difficult the treatment is but as you say forewarned is forearmed and we definitely dont sugar coat it here. 

My hubby Paul had bilateral radiotherapy and it can be a little tougher having the radiotherapy to both sides of the throat - he had bilateral despite only having his tumours on the right.

Like your hubby he was resistant to having a RIG but to be honest it was the best decision we made for a number of reasons. He had a tonsillectomy and like yours ate through the pain so was sure that that wouldn't be a problem.

As the treatment advanced Paul lost all taste - everything tasted like wet cardboard - And that was everything so eating was a resl time consuming chore. Then his actual swallow reflex was affected meaning he was at risk of aspiration and pneumonia so eating and drinking took such a long time to even get a small amount in. The pain did make swallowing difficult and the secretions caused by the radiotherapy made him feel severely nauseated all the time making eating impossible. There is no way I could have get his pain relief into him.The extreme fatigue was also a problem. The psychological effects of constantly knowing youve got to get enough calories in and the analgesia plus other meds can also be difficult and having another route of access should you need it definitely takes the pressure off both your hubby and you. I have to say that Paul would not have tolerated having a NG tube taped to his face 24 hours and the RIG ciukd be hidden under his clothes and he even had a back pack with his pump in so we cound go out or he could go into work with it. 

The weight loss can be an issue - Paul lost 3 1/2 stone despite having the RIG and at his worst couldnt eat anything by mouth so we wouldn’t have managed without it. 

However thats just our experience and as a nurse the RIG didnt phase me at all. Im sure others will be along to tell of their experiences - Hazel for instance had a NG tube halfway through when eating became just too difficult.

Good luck with the planning scan and mask fitting youre well on the road now .

Keep us posted and if youve got any questions ask away 

best wishes

Emma xx

Hi Bertha

So the good news, from diagnosis, is that the success rate is very high and as you have read this thread/our blogs you will seen the positives as well as some of the challenges.

I'm with you on the rig but to be fair i'm not really sure of the criteria applied when deciding. It was never mentioned to me and I really didnt want either. Ok i strugged a bit with appetite post treatment but there are ways around that with supplements etc. I get that its a way of getting fuel into body more easily but if I'm being honest, I'm glad I never had one fitted and glad struggled on without. Others may have different views but thats mine.

As for being back at work after 6 weeks post treatment, I'll be charitable and say I think thats really ambitious at best. Again the oft quote we are all different and we are, as some recovery quicker than others wheres like myself, its been a bit longer. My consultant and medical support team quoted 6 months is probably likely and they have pretty much been proven right. I work with computers etc and no real physical effort and although mentally can be just as tiring, I would urge some caution with a 6 week target. Only my view, but might have been better to explain it can take a little time during recovery phase and if hubby does really well and quicker then thats a bonus. Not saying necessarily  6 months but I doubt if I would be advocating 6 weeks before treatment and before seeing how hubby reacts to treatment.
I really like a quote from Hazels oncologist who says they understand the science but we understand our own bodies 
To be fair, the treatment itself is ok ish and you get throught it and the main challenges are when it stops and you go into recovery phase. Again not sure though  just as blaise as a dry mouth and a little sore in treatment covers all the possibilities nor the realitty of it all. If you read this thread and my blog along with Hazel's we mention mucus/oral thrush/swallowing exercises, neck burning issues/drinking plenty fluiid,assessment of pain management /appetite and medication to name but a few. I certainly would not describe treatment period summed up as just a dry mouth and a little sore.

I agree also, dont sugar coat as it serves no purpose and will have a negative effect when reality kicks in. It's a shame as I have have nothing but praise for all my medical team and after care and support and have total faith in them all Can understand why you would be left feeling the way you do and less than inspired.

So again to leave on a positive note, there is plenty of support and help here from the thread and if you read my blog and Hazels again you will get pretty much get more reality of potential challenges, but also please take the positves from us as well and again one of my oft quotes is that the light at the tunnel does actually exist.

I wish hubby well throughout treatment and recovery and please keep us posted on progress.
Also please let me know if I can help in any way at all.

Onwards & Upwards
Ian

Hi 

hurdle one over so sorry sbout Marks brother it must be hard for both of you. 

I had 75 % on my right side radiotherapy and a notional 25 % on my left as in oncologist words better to do a quick sweep on that side just in case . 

Lije we sat everyone is diffrrrnt I was a good 90 min drive and no way as weekscwent on could I have concentrated on driving  but again give it a try. The peg I was never offered one as dr was convince I woukd msintain swallow which I did but couldn’t eat enough calories hence the n g feed at week 4-5. They won’t do the rig once treatment starts as they say it’s too much for body to cope with. If I had my time again I would go fir the peg as an insurance policy u don’t have to use it but the n g tube wasn’t the mist pleasant thing. Like Emma says I couldn’t hide it and the stares I got when I went out were uncomfortable to say least. 

Good luck with the mask it’s there to save you so I personalised mine and spoke to her every morning made the radiotherapy team laugh if nothing else. My oncologist was brill tome with him wasn’t ruled by the clock done days we chatted about family football holidays then treatment. He even came over if he saw me on days I wasn’t due to see him and give me a hug. 

6 weeks is being optimistic but we are all fiddrrrnt. Please keep in touch daily if you need us. 

Like ian says onward and upwards to infinity and behind. 

Di you know if mark us H p v 16 + ? Ask at next meet

hazel  xfxc

Hi 

I’ve sent you a friend request  - seems like we have some shared experiences