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.

Thanks Emma & Hazel . 

No shaving since start of treatment & I don’t put anything in the bath water. He still has his taste buds but food is becoming softer now as his throat has become sore. Halfway through now let’s see what the next half brings! X x 

Gosh Dave - sounds really strange and thats one side effect Paul didnt get ! There should be a guide written by those whove been through it as Im sure the medics don’t know the half of it ! lol 

best wishes 

Emma 

No  worries I never lost taste buds which was a double edge sword as I could taste everything but some times I would accuse John of over salting things. Oops as if I would  dare to accuse him. Lol. 

Yep Emma we’ve got a fridge full of what I call my fancies. Today I wanted an egg custard wish u had known you had a fridge full u could have sent me some. John gad the temerity to sayveggs incuoboard make some lol as if

night everyone

h x

Hi all

So a follow up with my medical support team yesterday and a little more insight on my next steps.

As I have been religously following my action plan, I have managed to put on a little weight which pleased them. Their whole objective was to have me put on a little weight then have stabalised then a controlled weight loss. My partner did raise concerns eating so much fatty foods/creams/butter and maybe solving one problem but creating another.
So anyhoo, now they feel less concerned with appetite and have seen that I can gain weight and the fact swallowing is functioning ok, I am now to slowely revert to a more healthy regime and a more balanced diet. I still have to take the complan supplements for at least another month, but now more fruit and to introduce a little more healthly meals and more balanced. I have to cut out the **** in my diet  and out go crisps/choc pretzels and my beloved mini curly wurlys etc.Darn it !
Heads spinning a bit from told eat as much fatty and whatever you like ( even fish supper for breakfast if I wanted)  to being told now, ok thats fine, job done, back to more balanced healthy.. Just when I was starting to enjoy fish suppers/crisps gummy sweets etc. Well I'll do as I'm told once I finished my stash of pringles and M&S tottilla chips and my bags of curly wurlys.
I mentioned muscle loss as well and was told all the weight loss would not just be fat and in addition to all my inactivity my body composition will be breaking down muscles as well and will indeed have lost quite a bit of muscle and strength,
I have to start gentle walks and introduce some more exercise into plan now. They have a programm called Move too and I'm being referred to that as they can tailor an exercise plan sppecifically to help me as well as monitor progress and weight. 
Sleep still fragmented, but again referred to the quote of up to 2 years before potentially back to full new normal. Told to cut meds down slightly if I can do as I personally feel that contributes to fatigue so that should be another component to help.
Appointment in to see dental consultant in June and I have oncologist consultant next Tuesday for my regular MOT.
Also full set of bloods taken to check thyroid/iron etc from Gp this week.

All in all I feel lot progress made and the medical team have helped so much and although still a little to go re fatigue feel slowely improving. Off work until 30th May then have to have a long phased return to work and was also supported by Occupational Health work consultant.
I have had tremendous support from so many of the medical team and they all work together as a team bringing all the different components together and they even make a positive mental difference.
Back seeing them again at the end of the month to check on progress so they are keeping a good eye on me and monitoring closely.
So i guess its really helped me understand more about the type of foods we take and when to take rich fatty foods and pile on calories to then when to call halt a little and start to introduce a more balanced healthier type of fuel but ensuring nutritional value as well as taking complan shakes for quick energy bursts.

Just a further supplement to previous post re good and wasted calories and now little explantion from them how body composition changes and muscles are being broken down as well as fat as my body looks for glucose and energey from anywhere it can get it and its all tied in. 
Fatigue was put down to purely radiotherapy treatment still residual even after all this time so was told just have to learn to accept it and part and parcel, but now time to start more exercise.

All good, all positive and another step forward.

Hope this update helps at least one person and i know Graeme for example, you were having a little issue with weight and muscle loss, so hope that is getting back to normal as well. I guess overall message that once stabalised, is to have a sensible  balanced diet but accept we might occationally need a short sharp intake of fatty calories to help heal bodies

Wish everyone well no matter where you are on your journey and I'll maybe do a further update nearer end June when I will have at least started doing some work and also see what my dental consultant has to say about my gums.

Onwards & Upwards
Ian

Been awaiting your update Ian PM  sent, best wishes and thanks.

Hi Ian clear and consise  as usual thank you for your updates am sure will help lots of people along the way. Good luck with exercise slowly slowly Buzz don’t zoom up to outer space just yet !!! 

Mad you know Jojn has been a bit of a slave driver with me   Cheeky the other day he said thought I would have walked more while over on Spain. 

Umm 619 km biked

300 km walked and 2 mountains climbed I retorted bsck was enough. Lol.

ih well no hardship that I can’t eat crisps or tortillas then so no wasted calories there but my 2 squares if dark chocolate are staying plus my 2 Cadbury’s chocolate eclairs !! Lol 

fish n Chips  once a week still struggling with salads but at least veg go down xx

Good luck and look forward to updates. 

Hazel aka roadrunner. Onward and upwards. 

Graeme and Hazel - thanks and also replied to PM for both.

hazel

I think you have done amazing with your exercise and really inspiring what you have managed to achieve after treatement. I think you are something to aspire to and I'm the one not to regarding exercise and fatigue. We are like the before and after twins lol and we all want to be like you and the roadrunner.

Thats a lot for anyone even without the treatment so you deserve a massive pat on the back for achieving that much and also having the positive can do it attitude to go with it.

Tip - Nip John when he is sleeping to get your own back lol....I have woken up with an unexplained bruise before now !

I'll do as I'm told from Monday ( need to get rid of my stash ) and see how I get on with eating/exercise/fatigue/work/dental etc and will probably update again around the end June and see how this creaking old body bears up. Unlless of course anything of note comes up at my next medical team meeting 30th May

Onwards & Upwards
Ian

Hello there,

So encouraging to read this thread Ian. I am hoping you can help me. My father has just started radiotherapy for 3 tumours in his throat and will also have chemo. I am unsure of the details as he lives abroad and is quite private. I want to create a package of must haves for when the side effects kick in. So far from your thread I have a Humidifier, Soft toothbrush, lip balm, soluble paracetamol, and chicken soup! Anything else you can recommend? Many Thanks indeed and all the very best for your continued good health xx

Hi Gem

Am sorry to hear of diagnosis and wish your father all the best with his treatment.
Am glad you found this thread encouraging as so many of us have pulled together to help one another and pass on experinces and tips and encouragement.
I have also written a blog from the get go, warts and all, and would suggest you might find that helpful in terms of what potentially your father can expect and when. I have detailed a timeline of each week as it happens and there is also a helpful section on tips collected along the way from many as well as my own. There is also a link to Hazels blog on here and also worth a read.
You will also see from my blog that my biggest recommendation is to drink as much water as you can. It not only hydrates but also uses throat muscles and was one of the best bits of advice and medicines I was given by my specialist team
On the issue of paracetamol , that should only be taken if not on co codomol. Paracetamol and morphine together is fine,which will be needed more than likely, but I'm sure all the pain management and medication will be strictly controlled by medical support team

Have a read of blog below and among other things you will find lost of additional tips and advice and please let me know if I can help in anyway at all.
Happy if you wanted to friend request if you feel you wanted a more one to one oppertunity as treatment progresses or just to ask questions or chat more freely.

radiotherapythroat.home.blog

Onwards & Upawards
ian

Sorry to chip in here Gem .., your dad will need more than paracetamol that’s for sure , not sure how it works abroad but on my husbands first radiotherapy treatment he was given Paracetamol , cream for his neck you need loads of this, anti reflux medication ,& mouth wash . Since then he has been given co codamol & more paracetamol , more cream , toothpaste & morphine ! I’m really sorry to load this on you , as you must feel so helpless . He will also need to try and keep his weight up so I give him loads of milky puddings , yogurts , porridge & thenlike basically nothing lumpy but this has only been in the last few weeks . He is having 33 fractions of radiotherapy and has 8 left . side effects have started to really kick in this week & took morphine for the first time last night. I think this treatment gets worse once it has ended for a few weeks at least . I am sure they will give him all the pain relief that he will need at the hospital as it’s strictly monitored . Here they also have a dietician & speech therapist appointment every week . This chat room is lovely I have had a lot of beneficial help here . I brought him a humidifier tonight as his throat is so bad at night I hope it gives some relief . All the best Gem for your father . Love Ginny x x PS I feel so awful posting like this but he will need more pain relief for sure . And water , water  more water & tea ! 

Sorry to chip in here Gem .., your dad will need more than paracetamol that’s for sure , not sure how it works abroad but on my husbands first radiotherapy treatment he was given Paracetamol , cream for his neck you need loads of this, anti reflux medication ,& mouth wash . Since then he has been given co codamol & more paracetamol , more cream , toothpaste & morphine ! I’m really sorry to load this on you , as you must feel so helpless . He will also need to try and keep his weight up so I give him loads of milky puddings , yogurts , porridge & thenlike basically nothing lumpy but this has only been in the last few weeks . He is having 33 fractions of radiotherapy and has 8 left . side effects have started to really kick in this week & took morphine for the first time last night. I think this treatment gets worse once it has ended for a few weeks at least . I am sure they will give him all the pain relief that he will need at the hospital as it’s strictly monitored . Here they also have a dietician & speech therapist appointment every week . This chat room is lovely I have had a lot of beneficial help here . I brought him a humidifier tonight as his throat is so bad at night I hope it gives some relief . All the best Gem for your father . Love Ginny x x PS I feel so awful posting like this but he will need more pain relief for sure . And water , water  more water & tea ! 

I don't mean to jump in, but I am.  It must be awful for you being far away and not really knowing what's happening.  Perhaps it might be a good idea to suggest to your father to ask one of the team to put a pain ladder management plan into place for him.  It's really important that your fathers pain is kept under control.  Don't be concerned if morphine is on the list of painkillers. When I say list your Dad may need a combination of painkillers.  What Gingo has said is so true.  Pain management is crucial.  I ended up back in hospital because my pain was not being managed.  I was so lucky that a brilliant junior doctor was on when I was admitted to hospital.  A busy ward.  Once she got me sorted with the pain it was like night and day.  I wasn't undergoing any treatment.  That was just after having one tonsil out.  Oh my, then I get told the other tonsil had to come out..  Second time around wasn't so bad because I was taught how to manage the pain.

My heart goes out to you.  It must be so hard for you being far away from your Father.  Gingo is also right up there when it comes to weight.  What I don't agree with is eating rubbish when the body needs nourishment and steps taken to help build the immune system up.

This is not going to be an easy road, but as the old hands will tell you, 'it's doable' .  When I say old hands I mean that with the utmost respect..  They're the living proof that the mountains in front can be climbed.  I will keep you and your father in my thoughts.  Wishing you and your father all the very best.  Take care.

Madeleine 

Hi Ginny hang in there tough few weeks ahead but hey I am proof that things can only get better. Will be in touch when bsck in U.K. on boat shortly feeling good drive 4 hours up through Spain ! 

H xx

Hello-new here but been reading your posts for a bit & would like to join this group-as you seem a great (& very helpful) bunch!

I have had a few IT problems & probably will continue to-so forgive me if i take a while to return as I probably will have problems getting back on-(pw problems).

Anyway-Thanks for all the tips-been really helpful-as it's my husband Joe who is currently going through chemo radiotherapy for his tonsil & tongue cancer-into 6th week (treatments 3 chemos & 35 rads).

Currently just about managing to eat or slurp soups, maccies -boy does his tastes change! sometimes firmer stuff like cheese on toast-but getting harder by the day. All due to pain now & the thickened mucus is problematic-don't think there's much to improve that? He suffers bad post chemo-so dreading the last 1-so yes all in all-life's.....a challenge-to remain polite but wow I take my hat off to all of you because it's a tough road- & bless you all. I hope you are feeling ok- keep going as you are doing brilliantly! As for any 'Other halfs, carers' whatever-it's pretty tough too- & I do know  what that feels like but it's not about us-but to you all-take care & have an ok-even good day/evening.

Joy x 

Joy I have just brought my husband a humidifier as someone recommended on here Hazel I think . He had the best nights sleep last night having it on . He is in treatment too & suffering like yours ! Sigh x x. 33 radiotherapy fractions in total 8 left to go .

I’m hanging Hazel ! X x x

Hi Joy

Welcome to thread and do please keep us up to date with progress.

Yes, there are challenges but I often refer to the fact that the light at the end of the tunnel actually exists and the success rates for this are high.
As for "other halfs" it is about you as well. I could not have. (still couldnt) have done without my partner in all of this. It is hard on partners as well of course and they are on the journey with you not only with practical help but also providing mental streghth and often just someone to be able to talk things through. So I would say you play a vital role during and after treatment and shouldnt be underestimated what you do for us.

Mucus is one of the unfortuntte side effects but it does clear up and doesnt last that long. I also found humidifier helpful during treatment and I also used to put in some eucalyptus essential oil in a diffuser and found that quite beneficial

Good that still managing to eat and get fuel inside and there is also suppplement drinks available should he struggle a bit and your support team will be able to organise.
As for pain, I'm a great believer in that there are solutions available and my pain medication was stictly controlled by my medical support team, but I would say by and large my pain was all controlled and I wasnt in too much discomfort because of, so something I would always advise.
I have also kept a blog, warts and all from the get go and I have put a link on for ease below in case you havent seen on the thread.There is also a section on helpful tips etc picked up along the way. There is also  link to another blog from Hazel here that is also good help and worth a read.
radiotherapythroat.home.blog

Onwards & Upwards
Ian

Hi Ginny keep on hanging in like Ian says there’s light at the end of the tunnel , just some days the tunnel seems s longvway offf ! We are proof that it does work.  Will be updating my blog in next few days will let every one know. Hazel xx

Hi Ginny glad humidifier is working I found it invaluable used it every nap time and bedtime for st least 5 months. Plus to be honest will use it again this summer if it gets warm n sticky. I also bought s small one will let u know about that when I get home used it for travelling round with 

h x

Hi joy 

thus is hazel on way back from Spain. Don’t underestimate your value as a carer we can’t do it without you. On my blog don’t know if u read it yet my hubby John wrote s section on how he felt from his perspective warts and all. Be prepared for having words wevdud nbee never disagree but OMG I was st times s prima Donna but we got there in the end. 

Mucus di you have a nebuliser from the hospital? If do I used it at least 4 times a day.  Don’t put anything other than saline or plain water in it. No oils or anything. The pain relief use it tell him don’t suffer clue us in the name pain killer. Re eating if he doesn’t have a peg don’t becafrsid of getting the nasal feeding tube as eating rarely gets any better until way after trestment finished. But don’t dispair there is light at the end of the tunnel just retuning from Spain cycled 600 km walked 300 km 

blig www.radioactiveraz.wordpress.com with links to Ian’s on it

kerp in touch and welcome to our club that no one really wants to join but here we are a happy bunch. Lol

hazel x

Hi-Thanks for that, nice to chat to people in the same *** boat-but yes I feel more positive after reading all your posts on here.

Yes may ask for a nebuliser, will keep that in mind-we have a humidifier-got one early after reading about it on here & it's really helped him.

I read Ian's & John's info afew weeks ago & they were really helpful- We are-well my husband is on Oramorph now, we've just up ed the dose to the maximum & it's helping-as the symptoms get more intense, but only 9 more rads to go & 1 chemo so hopefully we will manage. And no the NGtube doesnt worry us-if needed he will 'gladly' have one.

Haha- that made me laugh you saying you were a prima donna! My husband is soooo much like that at the moment & it's not like him at all-I'm running around like a headless chicken & glad to be as it must be so hard to deal with all of this- our daughters laugh at what he's like (not that he knows this ;-)  ) But it is hard seeing your loved one suffer but today hes' doing good so I'm grateful for that.

I'm also grateful for this chat room- thanks all & hope you're all having a good day too. It's very encouraging to hear you are doing so well now- & lucky you just been to Spain!  We would normally be enjoying holidays & stuff now but had to cancel 1 in April & postpone 1 in June to sept-but am looking forward to that & hopefully bgy then he will be ok. But this is how it effects everyone I guess, & makes you appreciate your health when it returns. Joy x