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.

Enjoy xx

Made up for you Dave.

Thanks TFS holiday just booked to Gran Canaria in three weeks time, got some catching up to do.

Cotswold, as Ian says this is not nice but survivable, grit your teeth and face it head on you can beat it.

Dave

Thanks Dave, I am really pleased for you, enjoy your holiday...

Hi 

My partner has just been diagnosed with stage 3 cancer of the larynx, tonsils, and lymph nods. He is due to start 6 weeks of radiotherapy within the next 2 weeks.

Diann

Hi Diann welcome to the club we are s small exclusive club that no one wants to join. But on here u will find s good bunch of us all in varying stages I am hazel 8 months post radiotherapy for tonsil n lymph nodes. I have s blog www.radioactiveraz.wordpress.com detailing honesty my treatment n recovery with links to anchor 1707 Ian s blog. Good luck ask away any questions u will also ding s piece my hubby wrote from his perspective 

h keep in touch 

Hi Dave well done the holiday proud of u. I cope ok with it  only thing I do differently is factor 50 at all tones in my neck and always carry water with me. Can’t helueve I will be away while I am back home !!! Lol. Wales in 5 weeks for a week in cottage with family home 3 weeks bsck here for 16 days then 11 weeks home ! Then bsck here for  8 weeks 

keep in touch H x

Hi Dave 

well done on your holiday following in Hazels footsteps off to the sun.

best wishes

Emma

Hi Diann,

Am sorry to hear of partners diagnosis,but there is plentyof help and support here so please dont feel alone and please keep us posted on progress.

I also have a blog that I kept from the get go , warts and all , and I have put the link below for you for.
Both Hazel and myself have found our blogs have helped quite a few people and at least give some awareness of what to expect on the journey ahead.
We are all different, especially with recovery times, but the in the main we all kinda go through very similar side effects and recovery issues.
I hope this helps a litle but please let me know if I can help in anyway I can.

radiotherapythroat.home.blog

Onwards & Upwards
Ian

Hi all
While I am reluctant to update so much now, when reflected I decided I did want to update and record this on my thread as well as my blog

So back at my medical support team this week and really glad I am. So specialist nurse who heads it along with speech & language specialist and dietitian together.
They are great moral support as well as giving professional, helpful, expert advice.

Have been on an action plan for around 3 weeks or so now and record everything that is going into my body each day and have to log breakfast/mid morning/lunch/mid afternoon/dinner/bedtime.Am totally off morphine and on my normal pre treatment meds so that’s all good.

To me my action plan is doing great and I am pretty much eating what I want and ok sometimes struggle occasionally with swallow but on the whole its going great, well according to me.
According to my medical team  I’m doing fine and they are encouraged by, but they did explain and discuss a few things that I was pretty much unaware of and all a little more technical and scientific than I had considered.
Although I have not really solved the fatigue issues its slowly getting better but its about the tie in with body fuel. I was told my body is still in recovery mode and they consider it early stages. Again the quote of 12 to 18 months to fully have my new normal. My body is looking for glucose and energy from anywhere it can get it and  even speaking/doing work/exercise/swallow and eating is basically using more calories and effort than normal or basically if I had not had treatment.
Had scope down again,tested, and was also told I have 2 muscles at the back of my throat still prominent after treatment that are having to work quite hard to get food swallowed and down into stomach and that is expending a lot of energy apparently.
So while I have religiously been eating something each time on my action plan sheets there is a distinction to them between good calories and wasted calories. Right now good calories is fuel like puddings/cream/full fat yoghurts/fruit/normal meals etc but things like chocolate, my curly wurlys/gummy sweets, they consider wasted calories/energy and not adding any nutritional value which is the key word. I drink a lot of water/diet coke which is great for throat muscles and hydration but its not adding any nutritional value. To that end I have been advised to keep on with what I am doing with drinking and  eating but they also want me back on supplements ie Complan powder shake. This is to give bursts of energy and fuel and suggested I have one to hand when I am out and about or at appointments. If im really tired when out, take an energy shake. Have to take at least 2 a day. Its either that or the bush tucker Ensure drinks.
That’s the gist of but I actually found it all quite interesting and all these little complications and components that are more technical/scientific and tied together more than we know or consider. I am also getting referred to dental consultant so gums can be checked over and another specialist nurse regarding special neck exercises for the drooping/prominent change around neck area.
Back in two weeks and also consultant appointment but to anyone who might be wondering re recovery, no matter if its short or a little longer like myself, there is a real tie in with nutritional value and non added value items like my curly wurlys/gummy sweets  for example. We also take for granted the functionality of swallow and exercise/work/outings etc but again it was explained to me that we use calories far more easily, my body is still running a marathon and there is a whole tie in with all these different components. Most of us quote we area all different and we are so while this may really not apply to all and many consider recovery ok, some can take a little longer and I guess it helps to have some understanding when that is the case.

I know this may not be of interest to all, but it is to me and if it helps even one other person in similar circumstances then I consider that a good thing but hopefully of some interest to some others as well.

I’ve made such great progress since action plan but need to consolidate this with the guidance of my medical support team. I’ve to stay off work for further 6 weeks to concentrate fully on action plan then have a structured slow phased return to work with their aim to have me fully functional again.
The positive from this as well was that I was told that when body does all decide to all gel together it will suddenly happen quite quickly. They also advised that any weight loss I personally wanted when back to normal would have to be done in a controlled manner.

My blog is also updated at the end and I will be keeping blog up to date with progress on my action plan and outcomes from my various impending appointments if anyone is interested.

radiotherapythroat.home.blog

Onwards & Upwards
Ian

Hi all
While I am reluctant to update so much now, when reflected I decided I did want to update and record this on my thread as well as my blog

So back at my medical support team this week and really glad I am. So specialist nurse who heads it along with speech & language specialist and dietitian together.
They are great moral support as well as giving professional, helpful, expert advice.

Have been on an action plan for around 3 weeks or so now and record everything that is going into my body each day and have to log breakfast/mid morning/lunch/mid afternoon/dinner/bedtime.Am totally off morphine and on my normal pre treatment meds so that’s all good.

To me my action plan is doing great and I am pretty much eating what I want and ok sometimes struggle occasionally with swallow but on the whole its going great, well according to me.
According to my medical team  I’m doing fine and they are encouraged by, but they did explain and discuss a few things that I was pretty much unaware of and all a little more technical and scientific than I had considered.
Although I have not really solved the fatigue issues its slowly getting better but its about the tie in with body fuel. I was told my body is still in recovery mode and they consider it early stages. Again the quote of 12 to 18 months to fully have my new normal. My body is looking for glucose and energy from anywhere it can get it and  even speaking/doing work/exercise/swallow and eating is basically using more calories and effort than normal or basically if I had not had treatment.
Had scope down again,tested, and was also told I have 2 muscles at the back of my throat still prominent after treatment that are having to work quite hard to get food swallowed and down into stomach and that is expending a lot of energy apparently.
So while I have religiously been eating something each time on my action plan sheets there is a distinction to them between good calories and wasted calories. Right now good calories is fuel like puddings/cream/full fat yoghurts/fruit/normal meals etc but things like chocolate, my curly wurlys/gummy sweets, they consider wasted calories/energy and not adding any nutritional value which is the key word. I drink a lot of water/diet coke which is great for throat muscles and hydration but its not adding any nutritional value. To that end I have been advised to keep on with what I am doing with drinking and  eating but they also want me back on supplements ie Complan powder shake. This is to give bursts of energy and fuel and suggested I have one to hand when I am out and about or at appointments. If im really tired when out, take an energy shake. Have to take at least 2 a day. Its either that or the bush tucker Ensure drinks.
That’s the gist of but I actually found it all quite interesting and all these little complications and components that are more technical/scientific and tied together more than we know or consider. I am also getting referred to dental consultant so gums can be checked over and another specialist nurse regarding special neck exercises for the drooping/prominent change around neck area.
Back in two weeks and also consultant appointment but to anyone who might be wondering re recovery, no matter if its short or a little longer like myself, there is a real tie in with nutritional value and non added value items like my curly wurlys/gummy sweets  for example. We also take for granted the functionality of swallow and exercise/work/outings etc but again it was explained to me that we use calories far more easily, my body is still running a marathon and there is a whole tie in with all these different components. Most of us quote we area all different and we are so while this may really not apply to all and many consider recovery ok, some can take a little longer and I guess it helps to have some understanding when that is the case.

I know this may not be of interest to all, but it is to me and if it helps even one other person in similar circumstances then I consider that a good thing but hopefully of some interest to some others as well.

I’ve made such great progress since action plan but need to consolidate this with the guidance of my medical support team. I’ve to stay off work for further 6 weeks to concentrate fully on action plan then have a structured slow phased return to work with their aim to have me fully functional again.
The positive from this as well was that I was told that when body does all decide to all gel together it will suddenly happen quite quickly. They also advised that any weight loss I personally wanted when back to normal would have to be done in a controlled manner.

My blog is also updated at the end and I will be keeping blog up to date with progress on my action plan and outcomes from my various impending appointments if anyone is interested.

radiotherapythroat.home.blog

Onwards & Upwards
Ian

Hi ian

thank you for highlighting how we are all different in our recovery periods. Just need to get the message through to medical people as we know 10/14 days is  rarely the time that people start to feel human again. Will direct people to your excellent piece ,

onwards and  upwards to infinity and beyond 

h x

Well Ian that is hands down the best , most informative post i have ever read. You have a brilliant team there. I have managed to drop 7 pounds past 3 weeks without trying, and it worried me a bit. After being out of treatment for 4 weeks i started low fat again as i always have and upped my excercise. No wonder im losing weight and feeling a bit lethargic, i had put it all down to the skin  issues i had and the stress it gave me, which was significant with sleep loss etc.  . Right, more fuel needed, loud and clear, thanks. And good luck. And, and.........keep updating.

Hi Graeme (and Hazel)

I glad you found it helpful.

So glad you have taken on board the explanations/rationale around the types of foods/fats/calories etc you should be eating according to my team. As well as having supplements maybe for extra boost. Oh also smoothies is another recommendation from dietitian and low calorie nothing.Full fat yoghurts/milk/meals etc.
I would suggest Graeme, now is not the time to be thinking about weight loss and to consider the strong tie in with the type of fuel intake you have with weight loss and lethargy you describe.

lol and I'll keep updating if it helps and anything I glean from my appointments with medical support team. It's still a big thing for me.
ian

Keep the updates coming Ian someone will always find something useful from them, both yourself and Hazel keep this place rolling.

I suppose I was lucky in that I came out of treatment pretty unscathed compared to most and have lost only one and a half stone, but what I can’t understand is the muscle mass Iv lost, if it was just fat I could get my head around it, Iv not had an explanation for this either.

Dave

Dave i lost nothing during treatment at all, but 4 weeks after it ended and i got the rash, i noticed it, was deffo muscle loss. Ok an inch off waist maybe but biceps not pushing shirt now, chest less ( that is fine!). Was never overweight, just healthy eater, but confess i drunk a lot of booze and that has been gone 4 months , so a big calorie loss cumulatively. But Ian had given me a wake up call, his team gave great info on why it happens.

Thanks everyone for your updates and useful info from Ian. Well done Dave for beating it!! My partner is 2 months post treatment. He's eating well but can't taste much and not really enjoying chocolate (he got socks instead of Easter eggs!). He's still underweight (58kg, almost 6ft) and does get very tired. We're both self employed working together, so I'm still doing the physical work and he stays home and does the accounts and rest (lots of catching up to do for both!). Does anyone else find they're really cold? His hands are like ice blocks despite wearing many layers. He will have his PEG tube removed in a few weeks. He hasn't used it much for nutrition lately, but will finish off the rest of the ensures. He did amaze us by coming to Disneyland Paris and did lots of walking, despite hardly going out before then! But he was very tired and had early nights. For those starting treatment, just remember you'll get through it! My partner looked like death a few months ago, my young girls found it hard to believe he wasn't dying as he looked so ill and he hardly communicated with us for 2 weeks. But now he's so much better, and hopefully like Ian and others on here, beat it. And never be afraid to ask for help.

Hi, yes icy hands are the new norm for me , drives me nuts but docs and consultants seem unperturbed, and thyroid normal. But very annoying indeed.

I wonder if it passes, and I wonder why it happens. 

Hi Louiable brillthat hubby got to go to Paris with you. Would’ve bedn good to have him there . Please keep us up to date with your progress I am niw 8 month post radiotherapy still need a 20 min power nap. Am sleeping over 8 hours most nights now still git saliva issues but getting better daily. 

Tipfor anyone struggling with bread .buyva toastie machine ok crap sliced bread but hey guys it’s calories we are after lashings of lurpack cheese n ham or whatever you fancy it makes it much easier to eat. 

Ian ,Graeme and Dave yes I’ve lost muscle Masson,y on my arms no longer got bingo wings they are niw bingo folds nit happy but still wearing scrappy tops n bikinis I look at them as my war wounds .totally agree with Ian it’s taken some getting used to jn my case as always bought low fat yoghurts etc s now it’s straight to the full fat versions golden syrup on my porridge every day. Extra cream in soups .luckiky my  biking has kept my legs in decent shape .will be updating my blog in next few weeks with tips  n photos.

good luck to everyone no matter where they are in treatment positive mental attitude will get you there

hazel x  

Hi zgraeme yes the icy hand stage should pass I got ut around you4 stage  now it’s nit all the time and onky finger ends. My oncologist said it’s all about our body thermostats that have been fried due to treatment and when blood circulates it’s protectingbthe vital organs first heart kidneys etc and fingers n toes are at the extremities that are farest  away if that makes sense. It’s like everyine on this path we are all the same but different and get things at differing times. .

ps won’t mention Man U games yesterday suffice to say we were bad heaven help us Wednesday 

hx